Newest Information


DDNA Salutes Our Country's Veterans

On this Veterans Day, DDNA would like to recognize and thank veterans and their families for their service to our country . . . with a special thank you to the nurses who have served!


10 Tips to Support People with Autism Spectrum Disorders

The Journal of the American Academy of Child and Adolescent Psychiatry has recently revised Practice Parameters for the Assessment and Treatment of Children and Adolescents with Autism Spectrum Disorders.  Their "Ten Tips to Support Me" offer an emphasis on rights, participation, and quality.  To read these ten tips, go to:  http://www.jaacap.com/article/S0890-8567%2814%2900614-5/fulltext


Down Syndrome Awareness Month

October is Down Syndrome Awareness Month.  Its purpose is to spread awareness about Down Syndrome, make people aware of the abilities of people with Down Syndrome, and celebrate their accomplishments.  The nurses of DDNA join in recognizing their accomplishments and their abilities.  We wish you not only a great month of celebration, but also a great life of accomplishments.


Ebola Facts

If you have concerns about the Ebola virus, you can read information from the US Department of Health and Human Services at:  http://content.govdelivery.com/accounts/USHHS/bulletins/d6634f


Sulforaphane and Autism Spectrum Disorders

A chemical found in broccoli and other vegetables may help improve symptoms associated with autism spectrum disorder.  Researchers included 44 young men with moderate to severe ASD in a small study involving the chemical sulforaphane. The participants, ages 13 to 17, were randomly assigned to take either a daily dose of sulforaphane extracted from broccoli sprouts or placebo. Investigators and caregivers were not told who was receiving the active substance. Behavior and social interaction were evaluated at the start of the study and then at 4, 10 and 18 weeks. Half of the teenagers underwent a final assessment about a month after treatment ended.The results:
*At 18 weeks, 46% of the sulforaphane recipients showed significant improvement in social interaction
*54% in atypical behavior
*and 42% in verbal communication.
The researchers say improvements were so noticeable that by the end of the treatment period, both staff and family members correctly guessed treatment assignments. Still, they point out the chemical did not work for everyone. About one third of those taking sulforaphane showed no improvement. They say a larger study including adults and children is needed to confirm any therapeutic benefits.  


To Improve Oral Health of Adults with Developmental Disabilities, Support Caregivers

The first large-scale study in the US to investigate at-home oral care for adults with developmental disabilities suggests that future policy initiatives should focus on improving sources of support for caregivers, in addition to addressing access to care. Led by researchers at Tufts University, the study is published in The Journal of the American Dental Association.  For more information, go to:  http://www.eurekalert.org/pub_releases/2014-10/tuhs-tio093014.php


Welcome Heart of North Texas Chapter!

The new North Texas Chapter of DDNA has had its charter meeting and is now up and running.  They will be inducted into DDNA at the DDNA Chapter Luncheon during the conference in Atlanta next May.  If you live in North Texas and are interested in joining them, you can find out about their planned activities at:  http://ddna.org/chapter/hntexas 



Day of Learning in Virginia

The Virginia Chapter of DDNA is hosting a Day of Learning on Friday, October 17 in Williamsburg, Virginia at the Historical Triangle Center.  To receive a brochure, please contact deborah.tatum@dbhds.virginia.gov


Nurse Case Managers – Upper Passaic County, NJ

Nurse Case Managers – Upper Passaic County, NJ

Expanding throughout New Jersey, AdvoServ is seeking caring Nurse Case Managers for residential and day programs in Hewitt, Ringwood and West Milford. These programs assist adults with intellectual and developmental disabilities and behavior challenges. Our Nurse Case Managers help to ensure a safe, supportive environment by coordinating medical care, educating staff, communicating information to providers and family members, and providing direct assistance to our residents.

The preferred candidate will maintain an active NJ RN or NJ LPN license without discipline against license or privilege to practice, have experience working with children, adolescents and/or adults with severe behavior challenges, possess a valid active driver’s license without any major violations within the past three years and successfully complete AdvoServ’s pre-employment screening process.

AdvoServ offers extensive training, excellent career and development opportunities, competitive salary and benefits including medical, dental, vision, life insurance, 401(k) plan, paid time off, paid holidays, tuition reimbursement and employee referral bonus program.

Interested applicants should submit a resume to williamss@advoserv.com or fax to (856)669-0436. Please indicate the subject as Nurse Case Manager Position - North. For more information, contact Shawne Williams, NJ Recruiting Manager, at (856)669-0404. AdvoServ is an Equal Opportunity Employer.


Caring for Adults with IDD and Dementia: What Can You Do to Make a Difference?

The National Task Group on Intellectual Disabilities and Dementia Practices of the American Academy of Developmental Medicine and Dentistry in collaboration with Allegheny Valley School will be presenting a specialized 2-day training opportunity on the care of aging individuals with IDD and dementia.  The training will be lead by NTG Lead Trainers:  Kathleen Bishop, PhD, Kathy Service, RN, and Jody Thomas, RN.  The dates is September 30 and October 1st from 8:30 AM to 4:30 PM. at the Forest Grove Volunteer Fire Department, 2044 Ewings Mill Road, Coraopolis, PA, 15108.  Registration is $65 per person/$150 per team of 3 persons.  Kindly register by September 26.  Space is limited.  Online registration is located at:  http://aadmd.org/register/nhsalleghenyvalleyschool   For more information, contact Kelly Gremba at kgremba@nhsonline.org


New York State Chapter Holding 20th Anniversary Conference

The NYS ID/DD Nurses Association is holding our 30th Anniversary Annual Conference September 28-30, 2014 in Saratoga Springs, NY. One of our highlights includes a welcome reception with Mary Gage, not only one of our NY founding members, but also an important person in the history of DDNA. A track for Day Program nurses, leadership topics and updates on medical and medication topics will also be offered. We will also be holding a Post-Conference on October 30,2014 on Telephone Triage with Kathy Keating. For more information, please visit our website www.nysidddna.org 


Seminar on Caring for Individuals with IDD

The Erie Home for Children and Adults is offering a full-day conference entitled "Current Topics on Caring for the Individual with Intellectual Disability" on October 2nd, 2014 at the Ambassador Center on 7794 Peach St, Erie, PA.  The registration rate for nurses and healthcare professionals is $100.  Registration closes on September 26th.  For more information, contact Mary Jo Anderlonis Fulton at fulton@ehca.org.


Virginia Chapter Conference in October

The Virginia Chapter of DDNA is hosting an educational program on Supporting Virginians with Intellectual Disabilities on Friday, October 17 from 9 am to 3 pm at the Historic Triangle Community Service Center at 312 Waller Mill Road in Williamsburg, VA.  This conference is for all professionals who support persons with disabilities (parents, self-advocates, providers, QIDPs, nurses, physicians, administrators).  There is something everyone can learn during the day, as well as network and share information.  For more information, contact Enyonam Jordan-Brangman at PO Box 296, Centreville, VA, 20122.


Online Masters Degree in Developmental Disabilities

Nova Southeastern University is offering an MS in Developmental Disabilities at The Institute for the Study of Human Service, Health and Justice.  It is an online Master's program with 18 credit hours of foundational coursework, 9 credit hours in one of the Emphasis Areas, and 3 credit hours of a Developmental Disabilities Master's Research Project. Please visit this link for more details on the program http://www.nova.edu/humanservices/devdisabilities/index.html  and the different tracks available http://www.nova.edu/humanservices/devdisabilities/curriculum.html.   To submit your application please click on this link http://webstar.nova.edu/pls/PROD/bwskalog.P_DispNewApp create a login, go to graduate programs and then to the Institute for the Study of Human Service, Health and Justice, make sure you write down your login ID and password.  Tuition information can be found in http://www.nova.edu/humanservices/devdisabilities/tuition-fees.html For information on financial aid or scholarships please contact 954-262-3380 or go to http://www.nova.edu/financialaid/

   


Survey to Prevent Stigma Surrounding Health Conditions

This request was sent to us by Dr. Rader, a colleague from AADMD:  Through fear or ignorance, members of the public may shun, stare at or ask personal questions of individuals with different health conditions.  This behavior, which can be summarized as “stigma”, causes isolation, humiliation, and even avoidance of seeking medical help. The Simon Foundation for Continence is launching a renewed campaign to end stigma surrounding health conditions.  We are conducting a survey to identify medical conditions with the greatest stigma.  Your responses to this survey will be used to develop the most effective campaign. Please help us to lessen the stigma associated with medical conditions by taking our short anonymous survey at https://www.surveymonkey.com/s/simonvstigmapro1

 


New Test May Help Prevent Neural Tube Defects

A simple blood test could help prevent neural tube birth defects such as spina bifida, new research finds. The test would measure the concentration of folate (a form of vitamin B) in a pregnant women's red blood cells. The findings from this study -- conducted by an international team of scientists -- could help doctors predict the risk of serious birth defects known as neural tube defects because folate is vital to the proper development of a growing fetus. For more information, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_147568.html


Psych Interventions for Women with IDD and Forensic Care Needs

Research evidence to date concerning criminal offending by people with IDD has concentrated on male perpetrators and little is known about their female counterparts. There is now a systematic literature review that examines evidence on psycho-social therapies for females with IDD within healthcare forensic facilities.  A review of research methods and findings published in the Journal of Intellectual Disabilities identified a significant gap related to research-based therapies for women with IDD and forensic care needs.  The conclusion of the study was that more research is needed to focus on women with a dual diagnosis of IDD and psychiatric disorder who present challenging or criminal behavior.  For more information, go to:  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0065862/



Routine Pelvic Exams No Longer Recommended

The American College of Physicians is now recommending against routine pelvic exams for healthy adult women with no gynecological symptoms. ACP experts conducted an in-depth analysis of 52 studies and concluded pelvic exams in average-risk, asymptomatic women are not effective at detecting disease and do not reduce the risk of death.  However, they say, the research shows pelvic exams can cause pain, fear and anxiety in about a third of women and emotional distress for as many as 8 out of 10 women in some studies.  They also may lead to false-positives, which can trigger unnecessary, additional and potentially invasive testing. The American College of Physicians says this new guideline does not apply to Pap smear screening, only pelvic examination and stresses that those with symptoms should continue to undergo screenings.  This information should be of use to DDNA members who provide care for women for whom pelvic exams can cause pain, fear, anxiety, and emotional distress.


Adults with Asperger Syndrome at Higher Risk of Suicide

Adults with the milder form of autism known as Asperger syndrome are much more likely to think about and attempt suicide than those in the general population, a new British study suggests. The survey of 374 British adults with Asperger syndrome found that 66 percent reported having suicidal thoughts and 35 percent had planned or attempted suicide. Suicidal thoughts were much more common among those with a history of depression, the authors noted. For more information, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_146974.html


Oxidative Stress and Down Syndrome

Oxidative stress is a phenomenon associated with imbalance between production of free radicals and reactive metabolites (e.g. superoxide and hydrogen peroxide) and the antioxidant defences. Oxidative stress in individuals with Down syndrome (DS) has been associated with trisomy of the 21(st) chromosome resulting in DS phenotype as well as with various morphological abnormalities, immune disorders, intellectual disability, premature aging and other biochemical abnormalities. Trisomy 21 in patients with DS results in increased activity of an important antioxidant enzyme Cu/Zn superoxide dismutase (SOD) which gene is located on the 21(th) chromosome along with other proteins such as transcription factor Ets-2, stress inducing factors (DSCR1) and precursor of beta-amyloid protein responsible for the formation of amyloid plaques in Alzheimer disease. Mentioned proteins are involved in the management of mitochondrial function, thereby promoting mitochondrial theory of aging also in people with DS. In defence against toxic effects of free radicals and their metabolites organism has built antioxidant defence systems. Their lack and reduced function increases oxidative stress resulting in disruption of the structure of important biomolecules, such as proteins, lipids and nucleic acids. This leads to their dysfunctions affecting pathophysiology of organs and the whole organism. This paper examines the impact of antioxidant interventions as well as positive effect of physical exercise on cognitive and learning disabilities of individuals with DS. Potential terapeutic targets on molecular level (oxidative stress markers, gene for DYRK1A, neutrophic factor BDNF) after intervention of natural polyphenols are also discussed. This study was done in Comenius University, Bratislava, Slovakia, by the Faculty of Medicine.


The Lifetime Cost of Caring for a Person With Autism

The lifetime cost of supporting just one person with autism can range from $1.4 million to $2.4 million, with factors as varied as lost wages, residential care and special education driving up expenses, a new study has found.  Medical care plays a role in pushing these costs, but is not the main factor, said study senior author David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania Perelman School of Medicine.  Lost wages are a critical driver for the lifetime cost of autism, as parents leave work to care for their autistic children and adults with the disorder fail to find or maintain employment, Mandell said.  Other major factors include the expense of special education for children and residential care for adults.  Two months ago the CDC revised its estimate, and now figures that 1 in 68 people have autism.  "The numbers in this report are an underestimate of the true cost of autism in society, at least in the U.S.," Rosanoff said. For more information, please see:  http://www.nlm.nih.gov/medlineplus/news/fullstory_146711.html


REGISTERED NURSE NEEDED IN DENVER COLORADO

REGISTERED NURSE NEEDED IN DENVER COLORADO! Laradon prides itself in quality services, promoting best practices, integrity and dedication to improving the lives of children and adults with developmental disabilities. Work in a team environment where caring and compassionate people support each other. You will truly make a positive difference in people’s lives.

Work collaboratively with employees and host home providers to coordinate and manage the specialized needs of the participants served in Laradon’s Alternative School/Day Treatment program and Adult Residential program to ensure efficient and prompt health care services are provided. Balance training, consultation, and oversight with direct participant care. Provide training, direction and oversight to staff and host home providers on delegated tasks.

This position is generally an 8:00 a.m. - 5:00 p.m. position Monday through Friday and does require supporting host home providers after hours on call.

Requirements: Current Colorado Registered Nurse License, Bachelor’s Degree in Nursing, Current Colorado Department of Education License or willing to obtain, Five years’ experience in medical case management, Knowledge of and experience with developmental disabilities, Valid Colorado driving license, good driving record and reliable transportation.

Apply on line at www.laradon.org. Salary range for this position would be $40,000-$65,000.


From CDC: Physical Activities for Persons with Disabilties

More than 21 million US adults 18–64 years of age have a disability. These are adults with serious difficulty walking or climbing stairs; hearing; seeing; or concentrating, remembering, or making decisions. Most adults with disabilities are able to participate in physical activity, yet nearly half of them get no aerobic physical activity. Physical activity benefits all adults, whether or not they have a disability, by reducing their risk of serious chronic diseases, such as heart disease, stroke,diabetes and some cancers. Only 44% of adults with disabilities who visited a doctor in the past year were told by a doctor to get physical activity. Yet adults with disabilities were 82% more likely to be physically active if their doctor recommended it. 
As IDD nurses, you play an important role in educating direct support personnel about the importance of encouraging exercise for individuals with IDD, as appropriate and approved by the physician.  For more information about what you can do, go to:  http://www.cdc.gov/vitalsigns/pdf/2014-05-vitalsigns.pdf  


Wellness for Every Body

Wellness for Every Body is a physical activity and nutrition initiative to help adults with intellectual and developmental disabilities to lead healthier lives. Poor diets and inactivity are related to obesity, heart disease, some cancers, diabetes, and high blood pressure, and people with disabilities have a higher rate of these chronic health conditions. Improved nutrition and increased physical activity can help control or prevent these conditions, resulting in an improved quality of life. This approach shifts the whole system in a healthier direction. By offering instruction to the people who work most closely with adults who have disabilities, this program aims to ensure that home and work environments provide opportunities for people to make healthier choices. For more information on this initiative from the State of Minnesota, please go to:  http://www.hennepin.us/residents/health-medical/public-health-promotion#wellness-for-every-body


DDNA Member Seeks Physical Form Containing Hearing Testing

A member of DDNA is seeking an Annual Physical Form with a section regarding hearing  They are in need of a form that has a question for the physician to mark if the client needs a hearing test or not.  If you have such a form, please email it to mawillis@ddna.org.  We will see to it that information about the form is posted on the DDNA website.  Thanks in advance for taking the time to help a fellow DDNA member.


Project Stir

The Carolina Institute for Developmental Disabilities (CIDD) provides services, research, and training relevant to individuals with developmental disabilities and their families. To goal is to help individuals speak up for themselves, to know themselves and how to share their needs, ideas, and feelings with those around them.   Project Stir offers information on problem-solving steps and understand their rights and responsibilities.  To access the information on Project Stir, go to: http://www.self-advocate.org/default.html


Autism Spectrum Disorder Resource in Spanish

If you work with individuals on the autism spectrum who are Hispanic, or have staff who are Hispanic and provide care and services, you may be interested in the webinar below sponsored by The Arc. Please note that space is limited.

Autism Spectrum Disorders: An Overview in Spanish
Saturday, June 21, from 1:00 to 2:00 p.m. EST

It is estimated that 1 in 68 children has an autism spectrum disorder (ASD). Research shows that Hispanic children are often diagnosed later than the national average. With prevalence rates on the rise, it is important that families of underserved communities have access to quality information and resources.

The Autism NOW Center, a project of The Arc, and the Autism Society of America have partnered to offer a free resource to Spanish-speaking families Join us for this new webinar, which will be offered entirely in Spanish, to learn more about autism spectrum disorders. Presenters will provide an overview of ASD; discuss steps involved in screening and diagnosis; address existing barriers for Latino families; and help connect families to resources in their community. Register for this webinar today! Speakers: Yuliana Diaz, The Autism Society of America Marisol Ramos, Vision for Equality.

The Autism NOW Center is a project funded by the Administration on Intellectual and Developmental Disabilities (Grant # 90DN0283-04) and a national initiative of The Arc. The Center gathers, organizes, and disseminates readily accessible, high-quality resources and information related to community-based services that support independent living and self-determination, strategies that promote community-based experiences, and evidence-based interventions. As part of this mission, The Autism NOW Center hosts free webinars on selected Tuesday from 2:00 to 3:00 pm (EST). Designed for self-advocates, families, professionals, and the general public, these webinars encompass a wide variety of topics and practices in the area of autism spectrum disorders (ASD) and other developmental disabilities. For any further questions regarding these webinars, for more information on The Autism NOW Center, or for technical assistance, please contact Phuong Nguyen at pnguyen@autismnow.org.

For more information and/or to register, go to:

https://thearc.webex.com/mw0307l/mywebex/default.do?service=7&nomenu=true&main_url=%2Ftc0506l%2Ftrainingcenter%2FLoading.do%3Fsiteurl%3Dthearc%26apiname%3Dj.php%26servicename%3DTC%26needFilter%3Dfalse%26rnd%3D4421187330%26MTID%3Dt7155321b990586bb4d666c0715ff0c36%26RT%3DMiMxMQ%253D%253D%26UID%3D1869133632%26ED%3D277907892%26FM%3D1&siteurl=thearc


Atlantoaxial Instability Care Plan

A member of DDNA has posted a request for information about nursing care plans for atlantoaxial instability.  If you have information on this topic to share, please log onto the DDNA website with your username and password, go to the Down syndrome forum (http://ddna.org/forums-viewtopic.php?topicid=285#901) and click on "Post a Reply!"  Thanks for sharing what you know!


"Personal Preference Indicators: A Guide for Planning"

This tool is a guide for learning about a person's preferences, which is helpful in planning with a person who has IDD.  You can download it free from:  https://www.ou.edu/content/dam/Education/documents/personal-preference-indicator.pdf


Part Time Registered Nurse

Part Time Registered Nurse.

RN needed to coordinate medical services for individuals with developmental disabilities in community integrated living arrangements (CILAs) and day training programs. Perform general health assessments, first aid, and ordered treatment. Supervise medication administration and provide training to staff members.

Illinois RN license with minimum two years experience and valid driver’s license with acceptable driving record required. Previous experience with individuals with developmental disabilities preferred, but not required.

Part time, 24 hours per week. Day hours plus occasional on-call evenings/weekends. Compensation is commensurate with experience.

CTF ILLINOIS provides comprehensive supports and services to individuals with disabilities throughout the state of Illinois.

Send resume with cover letter and salary requirements to: CTF ILLINOIS– HR Generalist, 6081 Development Drive, Charleston, IL 61920 or fax 217-348-8823. www.ctfillinois.org E.O.E.


Director of Nursing: Champaign, IL.

Director of Nursing: Champaign, IL.

Director of Nursing needed to provide nursing services for individuals with developmental disabilities in community integrated living arrangements (CILAs), and intermittent programs for CTF ILLINOIS. The DON will provide medication administration training to employees per DHS guidelines and maintain a caseload in accordance with Rule 116 and best nursing practices, as well as supervise, mentor, and train all CTF ILLINOIS nursing staff (RN Trainers and LPNs).

Full-Time day hours plus occasional on-call evenings/weekends. Regular daytime travel will be required for training and instruction throughout the organization. Company vehicle provided and competitive benefits package available including health insurance, dental, and 401 K.

Illinois RN license and valid driver’s license with acceptable driving record required. Previous experience with DD preferred but not required. Bachelor’s degree in nursing preferred, though not required.

Submit Cover letter, salary requirements & resume to: Human Resources, 6081 Development Drive, Charleston IL. 61920, fax 217-348-8823.

CTF ILLINOIS is a not-for-profit, Illinois-based organization providing support and services to individuals with developmental disabilities. www.ctfillinois.org E.O.E.


FDA Cracks Down on False Claims for Autism Cures

Information from the Food and Drug Administration on Claims for Treating or Curing Autism:
"According to Gary Coody, R.Ph., FDA’s national health fraud coordinator, the agency has warned a number of companies that they are facing possible legal action if they continue to make false or misleading claims about products and therapies claiming to treat or cure autism. Some of these so-called therapies carry significant health risks and include:

  • “Chelation Therapies.” These products claim to cleanse the body of toxic chemicals and heavy metals by binding to them and “removing” them from circulation. They come in a number of forms, including sprays, suppositories, capsules, liquid drops and clay baths. FDA-approved chelating agents are approved for specific uses, such as the treatment of lead poisoning and iron overload, and are available by prescription only. FDA-approved prescription chelation therapy products should only be used under medical supervision. Chelating important minerals needed by the body can lead to serious and life-threatening outcomes.
  • Hyperbaric Oxygen Therapy. This involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. It has not been cleared for autism, among other conditions.
  • Miracle Mineral Solution. Also known as Miracle Mineral Supplement and MMS, this product becomes a potent chemical that‘s used as bleach when mixed according to package directions. FDA has received reports of consumers who say they experienced nausea, severe vomiting and life-threatening low blood pressure after drinking the MMS and citrus juice mixture.
  • Detoxifying Clay Baths. Added to bath water, these products claim to draw out chemical toxins, pollutants and heavy metals from the body, falsely offering “dramatic improvement” for autism symptoms.
  • CocoKefir probiotics products. Product claims include being a “major key” to recovery from autism, but they are not proven safe and effective for this advertised use.

Coody offers some quick tips to help you identify false or misleading claims.

  • Be suspicious of products that claim to treat a wide range of diseases.
  • Personal testimonials are no substitute for scientific evidence.
  • Few diseases or conditions can be treated quickly, so be suspicious of any therapy claimed as a “quick fix.”
  • So-called “miracle cures,” which claim scientific breakthroughs and secret ingredients, may be a hoax.

The bottom line is this—if it’s an unproven or little known treatment, talk to your health care professional before buying or using these products."



Our Lives, Our Health Care: Self Advocates Speaking Out About Our Experiences with the Medical System

The perspectives of individuals with I/DD related to their healthcare is an important issues for developmental disabilities nurses.  Below is information on how to access a document on this topic:

The Office of Developmental Primary Care and Autistic Self Advocacy Network are pleased to release, "Our Lives, Our Health Care: Self Advocates Speaking Out About Our Experiences with the Medical System." This document outlines the perspectives of people with I/DD on their interactions with the health care system and articulates an agenda to reform the way health care services are delivered for people with intellectual and developmental disabilities (I/DD). This report was compiled based on feedback from focus groups conducted by People First of Washington State, Green Mountain Self Advocates and the Autistic Self Advocacy Network of Boston. We thank them for their leadership and look forward to partnering with self-advocacy groups and allies across the country to advance health care access for people with I/DD.  Click here to access this document: http://odpc.ucsf.edu/sites/odpc.ucsf.edu/files/pdf_docs/Our%20Lives%20Our%20Health%20Care%20Final.pdf

We would also like to thank the Special Hope Foundation for its support of this report and for championing the right of people with disabilities to receive quality health care. With the support of Special Hope, the Office of Developmental Primary Care has developed a wide variety of clinical training materials, chart forms and resources. These can be accessed on our website. ODPC is available to present at trainings or conferences or to provide resources and technical assistance to others working to improve health care delivery for people with disabilities. Also, to engage the disability community, the Autistic Self Advocacy Network has released a series of policy papers on health care access for people with I/DD such as their analysis of the Affordable Care Act's impact on the I/DD community.

To further support this effort, please visit the Office of Developmental Primary Care website at http://odpc.ucsf.edu or the Autistic Self Advocacy Network website at www.autisticadvocacy.org . 


DDNA Member Looking for Info on Moral Distress and Ethical Dilemmas in IDD Nursing

DDNA received the following request from Char Baumgardner, who is a fellow member of DDNA.  It would be much appreciated if members who are familiar with issues and studies in which she is interested, or who have thoughts and opinions in this area would respond by sending an email to DDNA with their contact information so that we may forward these onto her.  Here is Char's request:  "I am a clinical nurse specialist at the Kennedy Krieger Institute in Baltimore, Maryland and am persuing my Doctoral degree in Nursing. I am a member of DDNA and am interested in doing my dissertation on something related to moral distress in nurses caring for patients with intellectual and other developmental disabilities. I have found a plethora of literature on nursing moral distress in general, and specifically in the care of patients in oncology, neonatology, geriatrics, surgery, psychiatry, those with chronic illnesses, and those at end-of-life. However, I have not been able to locate anything in the literature with regard to moral distress or ethical dilemmas experienced by nurses when caring for patients with intellectual and/or other developmental disabilities. Does anyone at DDNA know of any studies that have been done with regard to this? Is there an ethicist who works with the DDNA with whom you could put me in touch? Thank you so much for your help." 


April is National Autism Awareness Month

If you are an IDD nurse, chances are excellent that you may be caring for individuals who are on the autism spectrum. Current Centers for Disease Control and Prevention data now show that 1 in 68 children may be impacted by autism spectrum disorders. The Autism Now Center offers information of use to individuals and families (and IDD nurses!) at: http://autismnow.org/


Disorganized Cortical Patches Suggest Prenatal Origin Of Autism

The architecture of the autistic brain is speckled with patches of abnormal neurons, according to research partially funded by the National Institute of Mental Health (NIMH), part of the National Institutes of Health. Published in the New England Journal of Medicine on March 27, 2014, this study suggests that brain irregularities in children with autism can be traced back to prenatal development.

“While autism is generally considered a developmental brain disorder, research has not identified a consistent or causative lesion,” said Thomas R. Insel, M.D., director of NIMH. “If this new report of disorganized architecture in the brains of some children with autism is replicated, we can presume this reflects a process occurring long before birth. This reinforces the importance of early identification and intervention.”

Eric Courchesne, Ph.D. and Rich Stoner, Ph.D., of the Autism Center of Excellence  at the University of California, San Diego joined colleagues from the Allen Institute for Brain Science to investigate the cellular architecture of the brain’s outermost structure, the cortex, in children with autism. Courchesne recently reported an overabundance of neurons in the prefrontal cortex of children with autism.

For the current study, the researchers analyzed gene expression in postmortem brain tissue from children with and without autism, all between 2 and 15 years of age.

As the prenatal brain develops, neurons in the cortex differentiate into six layers. Each is composed of particular types of brain cells with specific patterns of connections. The research team focused on genes that serve as cellular markers for each of the cortical layers as well as genes that are associated with autism.

The study found that the markers for several layers of the cortex were absent in 91 percent of the autistic case samples, as compared to 9 percent of control samples. Further, these signs of disorganization were not found all over the brain’s surface, but instead were localized in focal patches that were 5-7 millimeters (0.20-0.28 inches) in length and encompassed multiple cortical layers.

These patches were found in the frontal and temporal lobes of the cortex—regions that mediate social, emotional, communication, and language functions. Considering that disturbances in these types of behaviors are hallmarks of autism, the researchers conclude that the specific locations of the patches may underlie the expression and severity of various symptoms in a child with the disorder.

The patchy nature of the defects may explain why early treatments can help young infants and toddlers with autism improve. According to the researchers, since the faulty cell layering does not occur over the entire cortex, the developing brain may have a chance to rewire its connections by sidestepping the pathological patches and recruiting cells from neighboring brain regions to assume critical roles in social and communication functions.

Disorganized cortical patch

Postmortem analysis of autistic brain tissue revealed patch-like areas of disorganized neurons. Arrows show a patch of decreased or absent expression of genetic markers across multiple layers of the dorsolateral prefrontal cortex. If you need an accessible version of this image, please contact the NIMH webmaster at nimhwebmaster@mail.nih.gov.

Source: Rich Stoner, Ph.D., University of California, San Diego

 


Time to Register for DDNA's Annual Education Conference in Orlando

Time is fast approaching for DDNA's 22nd Annual Education Conference, which will be held at the Rosen Plaza Hotel in sunny Orlando, Florida, May 2nd through May 5th. Room rates are $124/night. To learn all about the conference, including information about speakers, education sessions, and how to register, go to:  http://ddna.org/pages/conference  

You can make your hotel reservations directly with the Rosen Plaza Hotel by calling their toll-free number at 1-800-627-8258 and requesting the group rate for the DDNA National Nursing Conference for the nights that you plan to stay.  Room rates are $124/night.

We look forward to welcoming you to this important opportunity to network with other IDD nurses and to learn more about the care of persons with IDD. 


Standards and Systems of Care for Children and Adolescents with Special Health Care Needs

If you are involved or interested in health services for children and adolescents with special health care needs, the Association of Maternal and Child Health Programs is offering a valuable new tool entitled "Standards for Systems of Care for Children and Youth with Special Health Care Needs:  A Product of the National Consensus Framework for Systems for Children and Youth with Special Health Care Needs Project."  Just released this month, the tool can be accessed at:  http://www.amchp.org/AboutAMCHP/Newsletters/member-briefs/Documents/Standards%20Charts%20FINAL.pdf


Cedarcrest Center for Children with Disabilities

Cedarcrest Center

for Children with Disabilities

Keene, New Hampshire

… enriching the lives of children with complex medical and developmental needs and supporting their families through exceptional medical care, special education and therapy services in a warm, home-like setting for 65 years …

Director of Nursing Services

As Cedarcrest Center’s clinical leader, our Director of Nursing Services is responsible for maintaining exemplary standards of care and a culture of caring and commitment throughout the organization.

Requirements include:

▪ BSN, RN Licensure (or eligibility) in New Hampshire

▪ Minimum 3 years in pediatrics and 3 years in a leadership role

▪ Experience with children with multiple disabilities and/or chronic health needs preferred

Send cover letter, résumé, and three letters of reference to:

Christine Hadley, HR Coordinator,
Cedarcrest Center, 91 Maple Avenue, Keene, NH 03431

EOE

For more information and a complete position description, see our website:

www.cedarcrest4kids.org


Register for DDNA's 22nd Annual Education Conference May 2-5

Time is fast approaching for DDNA's 22nd Annual Education Conference, which will be held at the Rosen Plaza Hotel in sunny Orlando, Florida, May 2nd through May 5th. Room rates are $124/night. To learn all about the conference, including information about speakers, education sessions, and how to register, go to:  http://ddna.org/pages/conference  

You can make your hotel reservations directly with the Rosen Plaza Hotel by calling their toll-free number at 1-800-627-8258 and requesting the group rate for the DDNA National Nursing Conference for the nights that you plan to stay.  Room rates are $124/night.

We look forward to welcoming you to this important opportunity to network with other IDD nurses and to learn more about the care of persons with IDD.


The perfect part-time position!

Dungarvin, a residential-based supported living service provider, is seeking candidates for the perfect part-time (8 hr/wk) Nurse position in Marinette, WI. Flexible schedule with no weekends. 

Duties include, but not limited to, coordinating medical support for individuals with disabilities and staff training. Experience working with individuals with disabilities is helpful, but not required. Must have valid WI RN license and driver’s license. Local travel required. 

Apply online today at www.dungarvin.com. EOE/AA. 

Dungarvin Logo gold sm.jpg


2014 Nursing Research Grants

The American Nurses Foundation launched its 2014 Nursing Research Grants Program on Saturday, February 1st.  This program will provide up to $225,000 in research award to beginner and experienced nurse researchers.  ANF is the charitable and philanthropic arm of the American Nurses Association.  The 2014 grant program will focus on nurse leadership and how to empower nurses to become change agents in the transformation of the health care system. (The health care system could use some improving in the area of health care for persons with IDD.)  The application process is open through May 1, 2014.  So, as an IDD nurse, you have an interest in nursing leadership and nurse empowerment to improve health care for the individuals that we serve, go to:  www.anfonline.org to access the grant application.


DDNA Board Members Help Educate Travel Nurses About IDD Nursing

DDNA's President, Kathleen Brown and Vice President, Wendy Herbers, are featured in the current issue of Travel Nursing Magazine in which they discuss issues related to meeting the healthcare needs of individuals with IDD.  Specifically, they address problems that can arise when individuals are seen in emergency departments or are admitted to the hospital.  To read what they have to say, go to:  http://travelnursing.com/news-and-features/feature-detail/Caring-for-Developmentally-Disabled-Patients/41963?utm_source=ExactTarget&utm_medium=Email&utm_content=1.23.14JobAlert&utm_campaign=EmailMarketing


New Autism Guidelines Released

The American Academy of Child and Adolescent Psychiatry has updated its guidelines on diagnosing and treating autism spectrum disorders in the pediatric population.  For more information, go to:  http://www.jaacap.com/article/S0890-8567%2813%2900819-8/fulltext


In-Home Care Suit Being Considered by Supreme Court

In a suit brought by mothers paid to care for their adult children with disabilities, the U.S. Supreme Court is hearing a case as to whether in-home care providers can be required to pay union dues.  Click here for more information about this action:  http://www.disabilityscoop.com/2014/01/21/in-home-supreme-court/19033/


2014 Call for Nominations for DDNA President-Elect and Secretary

This is the first call for nominations for two seats on the DDNA Board of Directors. The first open seat is President-Elect. The President Elect serves for two years, and then succeeds to the office of President, making this a four-year commitment to DDNA. The second seat is that of Secretary. The Secretary serves a three-year term on the Board.

If you are interested in serving on the Board of Directors, either as President-Elect or as Secretary, you must complete the required nomination form and mail it to: DDNA, PO Box 536489, Orlando, FL, 32853 OR fax it to DDNA at 407-426-7440. Candidates must be current members of DDNA. The nomination form must be received at DDNA by fax or mail no later than midnight on March 31st, 2014. Applications received after this date will be disregarded.

To access information about the election overview, schedule, Board mission, Board responsibilities, click on “About Us” in the menu bar at the top of the DDNA website. Then click on “Elections.” This will take to you the Elections pages on the DDNA website, where you can learn more about the schedule, process, Board mission, responsibilities of Board members, and access the nomination form.

The nomination form can be found on the DDNA website at: http://ddna.org/downloads/nominationform.pdf We recommend that you print several copies when you finish completing the form, so you will have a copy for your records and a copy to send to DDNA.

Serving on the DDNA Board of Directors involves significant time and effort to carry out the duties of each office and to travel to quarterly in-person three-to-four day meetings. We advise you to review the General Time Commitment that is required of Board members at: http://ddna.org/pages/elections_responsibilities Serving on the Board is also highly rewarding and an opportunity to contribute to the efforts of DDNA to provide education, support, and advocacy for nurses who provide care to persons with intellectual and developmental disabilities.

Mary Alice Willis, RN, MSN
Executive Director

 


Win Free Registration to DDNA's 2014 Annual Education Conference in Orlando

How would you like to win FREE registration to DDNA's 2014 Annual Education Conference -- this is a Grand Prize worth $545! There are also First, Second, Third, and Fourth Prizes for other lucky winners. The instructions on how to participate in the contest and conference rules can be found in the new DDNA December Newsletter on the pages entitled "From the Executive Director" (pages 4-5).  The conference is being held at the Rosen Plaza Hotel in Orlando, Florida, May 3-5, with the Preconference taking place on May 2nd. Remember, to find out how to win free conference registration you need to read the Executive Director's letter in the December Newsletter, which can be found at:  http://ddna.org/downloads/newsletters/vol21_no4/

All the contest directions are spelled out in the newsletter; however, if you have any questions about the contest, please feel free to send your question in an email to admin@ddna.org. We look forward to seeing you in sunny Orlando for a highly informative conference with a great opportunity to meet other IDD nurses from all over the country!  Information about conference sessions and activities can be found at: http://ddna.org/pages/conference


 


Including Family Caregiver Assessment in Medicaid Home-and Community-Based Service Waiver Programs

This report from the American Association of Retired Persons presents findings from a 50-state survey examining how well the needs of family caregivers are assessed when states evaluate the needs of older people and adults with disabilities who qualify for home- and community-based services (HCBS) programs under Medicaid. It is the first detailed analysis of family caregiver assessment tools and processes in use by the states in Medicaid HCBS 1915(c) and 1115 waiver programs. Forty-six states plus the District of Columbia responded to the initial survey, a 92 percent response rate. Interviews with key informants were conducted in 13 states. Family support is often essential for helping older people and adults with disabilities continue to live at home and in the community. Yet, the work of family caregivers can be demanding—physically, emotionally, and financially. If caregiver needs are not assessed and addressed, their own health and well-being may be at risk, which may, in turn, lead to burnout—jeopardizing their ability to continue providing care in the community.  For more information, go to: 
www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2013/the-need-to-include-family-caregiver-assessment-medicaid-hcbs-waiver-programs-report-AARP-ppi-ltc.pdf


More Accurate Updated Screening Tool For Autism in Young Children

A study supported by the National Institutes of Health has developed an revised autism screening tool for very young children that has been shown to be much more accurate than earlier versions at identifying children who could benefit from further evaluation. The Modified Checklist for Autism in Toddlers — Revised, with Follow-Up (M-CHAT–R/F) — is a free, two-step screening tool used to detect children likely to have autism. It is intended for use at regular well-child checkups for children 16 to 30 months old. With the M-CHAT-R/F, health care providers can classify a child’s risk of having autism as low, medium or high, on the basis of parents’ answers to 20 questions.  More detailed findings of this study have been published in Pediatrics. The revised autism screening tool is available free online at:  http://www2.gsu.edu/~psydlr/M-CHAT/Official_M-CHAT_Website.html


National Institutes of Health Clinical Trials Re: to Developmental Disabilities

Do you ever wonder what research is being done by the National Institutes of Health related to developmental disabilities?  Have you considered that it is important for researchers to be able to conduct clinical research with people who have developmental disabilities to learn more about the various causes and treatments for their disabilities – as well as how other health problems can also affect people with IDD?  Many nurses who work in IDD nursing are unaware of what is involved in these studies and, as nurses, we need to be aware of the research that has been done and is still being done.  To learn more about the protocols that researchers are required to follow when conducting clinical studies, go to:  http://1.usa.gov/18RKjgz 

If you are interested in studies beginning, in process, or completed related to developmental disabilities, you may be interested in the following: http://1.usa.gov/JIyJ1r

Since people with IDD can have conditions that are particular to their specific disability, as well as other health issues, such as heart disease, cancer, hearing disorders, etc., it can be very helpful for nurses to keep up with the latest studies that have been done related to other health issues, studies that that are currently in progress, and those that may be recruiting subjects.

   


New Research Has Started on Down Syndrome and Alzheimer's Disease

Improved health care for persons with Down syndrome now means they routinely reach 50 or 60 years of age, and sometimes beyond.  However, if they live long enough, they are almost certain to develop Alzheimer’s disease (AD).  All almost all develop dementia by age 60.

The Alzheimer’s Disease Cooperative Study (ADCS), based at the University of California, San Diego School of Medicine, is beginning a new study called the Down Syndrome Biomarker Initiative (DSBI), which was launched in March 2013. According to the study’s director, Michael Rafii, MD, PhD – medical director of the ADCS – its aim is to discover indicators of Alzheimer’s and study progression of the disease, with the ultimate goal of better understanding brain aging and AD in adults with Down syndrome.  For more information go to:  http://health.ucsd.edu/news/releases/Pages/2013-12-16-down-syndrome-study.aspx


IDD-Experienced Chief Nurse Executive Position Open in Austin, Texas

The Austin State Supported Living Center is looking for a licensed registered nurse with a bachelor’s or master’s degree in nursing to fill the position of Chief Nurse Executive. Qualified candidates must have three years of experience as a practicing registered nurse in a recognized health agency, hospital, or health-care facility; and experience in supervision and administration. Experience working with people with developmental disabilities is preferred. The CNE is responsible for overseeing the daily operations and activities of the nursing department of 115 RNs and LVNs who provide care and treatment to approximately 300 residents. The CNE oversees special investigations, preparation of management and productivity reports, and the development and implementation of techniques for evaluating nursing activities. Ensures systems are in place to ensure appropriate and effective nursing care is provided to those served. The CNE must be able to appropriately interact with people with developmental disabilities and staff members. This position is an integral part of the senior executive management team. Benefits include health insurance, paid vacations, 15 holidays per year, an excellent retirement plan, and a competitive salary. In addition, the successful candidate will have an opportunity to truly make a difference. For more information contact Judy Garner at (512) 438-3268 or to apply go to www.careersatdads.com. A state of Texas application is required to be considered for this position. You may complete the application on line or fax it to 1-866-245-3646.

 


Happy Thanksgiving From DDNA

On behalf of the Board of Directors and the DDNA Executive Office, we hope that you have a wonderful and delicious Thanksgiving holiday.  As they say, "Keep Calm and Gobble till you Wobble!"



Aging Well with Autism (55 and Older)

The Heller School for Social Policy and Management at Brandeis University and the NLM Family Foundation co-sponsored a workshop for the purpose of discussing several unique challenges faced by the growing population of individuals with autism after age 55.  Topics discussed included access to medical care and health care services, as well as senior life planning initiatives for older adults with autism and their families.  A summary of the presentations and discussions that took place at the workshop can be found at: http://nlmfoundation.org/documents/2013AgingWellwithAutismSummaryFinal.pdf


New Powerpoint for Certification Exam Preparation

DDNA's President-Elect Karen Green McGowan has created a .ppt presentation geared toward helping members prepare to take the CDDN or DDC certification exam.  This  resource has been placed on the Resource page of the DDNA website in the section on Education.  You must be logged in to the website with your DDNA username and password to access the Resource Page.  Please scroll down to the section on Education to locate the .ppt.


Autism Spectrum Disorders and Media Overload

A study done by the American Academy of Pediatrics looked at the relationship between sleep and the use of television, video games, and computers.  Interestingly, it found that boys' use of these entertainment media in the bedroom reduced sleep among all boys, but was more strongly associated with lack of sleep among boys with autism spectrum disorder.  Researchers suggest that it might be a good idea to look at the use of entertainment media in individuals with autism are failing to get adequate sleep.  More more information, go to: http://pediatrics.aappublications.org/content/early/2013/11/12/peds.2013-2066.abstract


Call for Proposals to Speak at AAIDD Conference

Maggie Nygren, the Executive Director and CEO for the American Association on Intellectual and Developmental Disabilties, has asked DDNA to share AAIDD's call for proposals with our members.  If you are interested in submitting a proposal to present at their conference next June, you can click here to read the call for presentations:  http://aaidd.org/education/annual-conference/2014-call-for-presentations  


Bethesda Lutheran Communities

Bethesda Lutheran Communities is a Christ-centered non-profit agency dedicated to enhancing the lives of people with intellectual and developmental disabilities through services that share the good news of Jesus Christ.

We are seeking a Registered Nurse in the Laguna Hills/Mission Viejo area of California to work with program managers and other agency staff to support the medical needs of adults with developmental and related disabilities in order to help them maintain and achieve healthy and full lives as they grow in independence and confidence.

RN duties include:

· Oversees medical care including medication administration, pharmacy services, medical appointments, medical records, and overall plan care.

· Directs, plans, and coordinates effective nursing service programs for all individuals served.

· Assists in the training of other nursing staff and direct support staff regarding medical information, and supports.

· Participates as a part of the support team and serves on committees as assigned.

· Solicits individual wants and encourages choices regarding medical services and supports.

· Helps support individuals served in increasing their knowledge of medical supports, services, and their individual medical needs.

  • Completes required documentation in a timely manner.

· Assures compliance with local, state, and federal regulations.

· When needed, acts as a liaison between the individual and medical professionals.

  • Other duties as assigned.

Qualifications:

· A current, valid state-specific Registered Nursing License

· Associate of Science degree from an approved school of professional nursing

· At least 1-3 years experience in a position working with persons with a developmental disability or in a nursing home setting or experience in geriatrics, rehabilitative/restorative nursing, or psychiatric nursing desired

· Ability to educate individuals medical concerns, diagnosis, and consequences of medical treatment

  • Strong documentation skills

· Computer skills--proficient in applications such as Microsoft Word, Outlook, Excel, PowerPoint and a familiarity with computerized documentation systems.

  • 18 years old
  • A valid driver’s license and the ability to drive
  • Pass a criminal background check, physical and TB test
  • Maintain confidentiality, problem-solve and be a team player
  • Positive attitude

· A philosophy that is committed to the mission, vision and core values of Bethesda Lutheran Communities.

If interested, please visit our website and apply at: www.bethesdalutherancommunities.org


Earliest Signs of Developing Autism

Eye contact during early infancy may be a key to early identification of autism, according to a study funded by the National Institute of Mental Health (NIMH), part of the National Institutes of Health. Published this week in the journal Nature, the study reveals the earliest sign of developing autism ever observed — a steady decline in attention to others’ eyes within the first two to six months of life. For more information go to the NIMH website at:  http://www.nih.gov/news/health/nov2013/nimh-06.htm  


Certification Review Webinar Rescheduled for November 12

The Certification Review Webinar being taught by DDNA President Elect Karen Green McGowan has been rescheduled for November 12th from 7 PM to 9 PM.  There was an audio technical problem with Go To Meeting, which is the company that provides DDNA with access to the webinar platform.  Hopefully, all issues will be resolved by November 12th. 


Flu Prevention for Children and Adults with Special Needs

It's flu season and time to get immunized to help protect yourself and the people for whom you provide care from influenza.  To learn more about influenza vaccination for children with special needs, you can go to: 

http://www.medscape.com/viewarticle/811624  

For information about influenza vaccine for adults, you can go to: 
http://vhcpir.org/hsi/m_mineZ.asp?module_name=vacinfl&group_type=certification&module_title=Influenza%20Vaccine

It will have my name (Mary Alice Willis) on it, but since I developed and distribute these courses, just pretend you are me and click to take the course content free!
Mary Alice Willis, Executive Director, DDNA



DDNA Certification Review October 22nd

If you are planning on taking the certification exam, you may be interested in this review session that will be taught by Karen Green McGowan, DDNA's President Elect and Certification Chairperson. Please read the directions for participation below:


Join us for a Webinar on October 22


Space is limited.
Reserve your Webinar seat now at:
https://www3.gotomeeting.com/register/546821006

This is a two hour review of information that will assist the applicant to successfully complete the CDDN, DC exams for RN's and LPN/LVN's. It will cover syndromes, medications and their side-effects as well as other pertinent information.

Title:

DDNA Certification Review

Date:

Tuesday, October 22, 2013

Time:

7:00 PM - 9:00 PM EDT

 
After registering you will receive a confirmation email containing information about joining the Webinar. 

System Requirements
PC-based attendees
Required: Windows® 8, 7, Vista, XP or 2003 Server 

Mac®-based attendees
Required: Mac OS® X 10.6 or newer

Mobile attendees
Required: iPhone®, iPad®, Android™ phone or Android tablet  


DDNA Fall Newsletter Now Available

The DDNA Fall Newsletter is now available on the DDNA website at: http://www.ddna.org/pages/newsletter . Remember, you must be a current DDNA member and logged into the website with your username and password to be able to access the newsletter. We hope that you enjoy all the information in the newsletter. If you would like information about writing an article or want to submit news for our next newsletter, please email DDNA at contact@ddna.org. The newsletter is a wonderful way to share knowledge about IDD nursing with other members. Our next newsletter is scheduled for December.  Please contribute!

 


DDNA Member Seeking Info on Forms for Nursing Quarterly Exams

There is a DDNA member who has made the following request on the DDNA Assessment Tools Forum (on the Forum page of the DDNA website): "Does anyone have a form for their nursing quarterly physical examinations. I am looking at revising our form and would like to view others. I work at a state-run ICF/ID." If you have a form that you are willing to share with her, please go to the DDNA Assessment Tools Forum and then click on "Depression Screening" to respond to her request. Thank you for helping out a colleague.


Rett Syndrome Gene Dysfunction Redefined

Whitehead Institute researchers have redefined the function of a gene whose mutation causes Rett syndrome, a neurodevelopmental autism spectrum disorder. This new research offers an improved understanding of the defects found in the neurons of Rett syndrome patients and could lead to novel therapies for the disease.  For more information, go to:  http://www.eurekalert.org/pub_releases/2013-10/wifb-rsg100113.php


Genetic Analysis of Individuals with Autism Finds Gene Deletions

Researchers at the Icahn School of Medicine at Mount Sinai, scanned the genome of hundreds of individuals, and discovered those diagnosed with autism spectrum disorder were more likely to have gene deletions than were people without the disorder.  That means those individuals -- seven percent of the study group -- had one copy of one or more genes when they should have had two.  For more information about this research, go to:  http://www.eurekalert.org/pub_releases/2013-10/tmsh-gao100113.php


Sleep Tool Kit for Children with Autism

Many children with ASD have difficulty with sleep. This can be stressful for children and their families. The Autism Speaks Treatment Network is offering an informational booklet for download that is designed to provide parents with strategies to improve sleep in their child affected by autism spectrum disorders (ASD). The suggestions in this tool kit are based on both research and clinical experience of sleep experts.  For more information, go to:  http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/sleep-tool-kit




NIH-Funded Study Discovers New Genes for Childhood Epilepsies

A genetic study of childhood epilepsies (including infantile spasms and Lennox-Gastaut Syndrome) has linked two new genes to severe forms of disease and provides a novel strategy for identifying therapy targets. The results suggest this may be a highly effective way to find and confirm many disease-causing gene mutations.  For more information, go to:  http://www.eurekalert.org/pub_releases/2013-08/nion-nsd080513.php


Autism Affects Different Parts of the Brain in Men and Women

A study by the University of Cambridge has shown that the brains of men and of women are not affected in the same way by autism; specifically brain areas that were atypical in adult females with autism being similar to areas that differ between typically developing males and females. This was not seen in men with autism. For more information, go to: 
http://www.cam.ac.uk/research/news/autism-affects-different-parts-of-the-brain-in-women-and-men


Children with Disabilities Treated More Harshly in Developing Countries

This study will break the heart of every IDD nurse. Research done by Duke University Center for Children and Family Policy jointly with National Institute of Child Health and Human Development found that in  developing countries children with IDD are more likely to be severely punished by being hit on the head or beaten with an object, such as a stick or belt. (Even sadder is that other studies have shown similar connections between disabilities and harsh parenting practices, and even abuse, in the U.S., Canada and Western Europe.) 
Included in the study were children with cognitive, language, vision or hearing and motor difficulties. All four groups were more apt to receive violent treatment. Children with motor disabilities, such as difficulty or delays in walking, fared particularly badly. Motor disabilities were most consistently associated with harsh treatment, ranging from psychological aggression to physical violence.  Researchers relied on the caregivers' own reports of parenting practices within their household.
For more information, go to:  http://bit.ly/17cU0nU 
Additional information from the National Institute of Child Health can be found at:
http://bit.ly/14eZK5C  

CITATION: "Associations between Child Disabilities and Caregiver Discipline and Violence in Low- and Middle-Income Countries," Charlene Hendricks, Jennifer E. Lansford, Kirby Deater-Deckard, and Marc H. Bornstein. Child Development, July 30, 2013.  


Having a Heat Wave? Keep Individuals Cool and Safe!

People with a chronic medical condition can be less likely to sense and respond to temperature changes. People with developmental disabilities may be able to sense the heat, but may not know what to do to cool themselves down to prevent developing a heat-related illness.  Also, they may be taking medications that can make the impact of extreme heat even worse.  For more information from the Centers for Disease Control and Prevention about keeping cool and safe during a heat wave, go to:  http://www.cdc.gov/extremeheat/medical.html

To learn the warning symptoms of heat-related illness, go to:  http://www.cdc.gov/extremeheat/warning.html  


Statins May Help Treat Rett Syndrome

Studies done in mice are demonstrating that statins (common drugs used to lower cholesteral) may help treat Rett Syndrome.  Common symptoms of this syndrome include:  partial or complete loss of acquired purposeful hand skills, partial or complete loss of acquired spoken language, repetitive hand movements (such has hand wringing or squeezing, clapping or rubbing), and gait abnormalities. 

For more information about Rett Syndrome, go to:  http://www.ninds.nih.gov/disorders/rett/detail_rett.htm
For more information about these early research studies being conducted to help treat Rett Syndrome, go to: http://www.rsrt.org/about-rsrt/press-releases/statins-suppress-rett-syndrome-symptoms-in-mice/


New Screening Tool for Diagnosing Autism in Children

A new technique that measures tiny fluctuations in movement using a computer can help to diagnose autism in infants and children, as well as track progress in growth and development. These findings from
Rutgers University could make it easier to start appropriate therapy earlier.  Children with autism could learn and communicate better by developing self-motivation and learning to communicate through media and motion. In a study, all 25 children (most nonverbal) spontaneously learned to choose their favorite media.

See a video showing the therapy in use at: http://www.youtube.com/watch?v=arVAaD0ZV_0

To learn more, read the articles below.

Title: Give spontaneity and self-discovery a chance in ASD: Spontaneous peripheral limb variability as a proxy to evoke centrally driven intentional acts
Journal: Frontiers in Neuroscience
DOI: 10.3389/fnint.2013.00046
Link: http://www.frontiersin.org/Integrative_Neuroscience/10.3389/fnint.2013.00046/abstract

Title: Autism: The Micro-Movement Perspective
Journal: Frontiers in Neuroscience
DOI: 10.3389/fnint.2013.00032
Link: http://www.frontiersin.org/Integrative_Neuroscience/10.3389/fnint.2013.00032/abstract


Early Research on "Silencing" the Extra Chromosome That Causes Down Syndrome

Researchers at the University of Massachusetts say they have isolated and silenced the extra chromosome that causes Down syndrome. The researchers say this could stop the double copy of chromosome 21 from expressing itself in isolated cells, giving hope that the condition could be managed with gene therapy.  Carol Boys, chief executive of the Down’s Syndrome Association, has gone on the record saying: "The findings could have serious implications for future work that may be of real benefit to people with Down’s syndrome. We are a very long way from understanding how these findings might translate into clinical applications but it could be that they will be of great assistance in the search for conventional treatments for some of the health conditions that affect people with Down’s syndrome."  For more information, go to:  http://www.umassmed.edu/news/index.aspx






Brain's "Wiring" Different in Persons with Autism

Researchers in London have found that there are significant differences in the length of the connections between regions of the brain when they compared people with autism to those without autism.  In people with autism, the lengths of their connections were shorter in brain areas that are anatomically different in autism.  The researchers think that these wiring differences " may lead to locally over-connected networks in the brains of [patients with autism spectrum disorders] that could explain some autistic symptoms, such as repetitive behaviors."  For more information about this research, go to:
http://www.nlm.nih.gov/medlineplus/news/fullstory_138938.html


New Information from NIH about ILS

Isolated lissencephaly sequence (ILS) is a condition that affects brain development before birth. Normally, the cells that make up the exterior of the brain (cerebral cortex) are well-organized, multi-layered, and arranged into many folds and grooves (gyri). In people with ILS, the cells of the cerebral cortex are disorganized, and the brain surface is abnormally smooth with an absence (agyria) or reduction (pachygyria) of folds and grooves. In most cases, these abnormalities impair brain growth, causing the brain to be smaller than normal (microcephaly). This underdevelopment of the brain causes severe intellectual disability, delayed development, and recurrent seizures (epilepsy) in individuals with ILS. ILS affects approximately 1 in 100,000 newborns. For more information, go to: http://ghr.nlm.nih.gov/condition/isolated-lissencephaly-sequence


Dental Care Every Day: A Caregiver’s Guide

The National Institute of Dental Health and Craniofacial Research has developed a brochure on dental care for persons with developmental disabilities.  To read the guide, go to: http://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/DentalCareEveryDay.htm


Vision Deficits in Adults with Down Syndrome

Research done by the New York State Institute for Basic Research in Developmental Disabilities has shown that adults with DS had significant vision deficits.  In individuals with DS, almost all eye structures have some abnormality that decreases vision.  Also noted was that the pattern of deficits was similar to those seen in adults with Alzheimer’s disease.  To read more about this research, go to: http://www.ncbi.nlm.nih.gov/pubmed/23784802


Riding a Bike Enhances Cognitive Function in Adolescents with IDD

Studies in Germany suggest that riding a bike enhanced cognitive performance in adolescents with IDD.  The exercise temporarily enhances neuronal activity.  To read more about this research, go to: http://www.ncbi.nlm.nih.gov/pubmed/23770890


Link Between Autism and Gut Bacteria in Children

Researchers at Arizona State University's Biodesign Institute suggests that a link may exist between autism and bacteria in a child's digestive tract. Researchers analyzed gut bacteria in fecal samples from 20 children with autism and 20 children without the disorder. The children with autism had significantly fewer types of gut bacteria, which potentially could make them more vulnerable to harmful bacteria.The study also found that children with autism had significantly lower amounts of three types of important gut bacteria. For more information about this study, go to:
http://www.nlm.nih.gov/medlineplus/news/fullstory_138406.html


Effects of Altered Connectivity Within the Brains of Children with Autism

Studies done at Stanford University School of Medicine have found that children with autism may have both higher levels of connectivity between certain areas of the brain and weaker connections between certain other brain areas.  The hyperconnectivity could result in restrictive and repetitive behaviors, while the hypoconnectivity could result in problems in areas of the brain that deal with processing the human voice and feelings of "reward."  For more information about these studies, you can access the National Library of Medicine at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_138192.html


MRSA/VRE Information to Share with Caregivers

Outside of healthcare settings, there is little risk of transmitting organisms to persons at risk of disease from MRSA / VRE; therefore, healthy people are at low risk of getting infected. Individuals with IDD who live in the community, however, may have health problems that put them at increased risk, and caregivers may need information about preventing the infection from spreading to other residents. The Centers for Disease Control and Prevention provides information to help increase awareness of the need for the following precautions:

  • Caregivers should wash their hands with soap and water after physical contact with the infected or colonized person and before leaving the home.
  • Towels used for drying hands after contact should be used only once.
  • Disposable gloves should be worn if contact with body fluids is expected, and hands should be washed after removing the gloves.
  • Linens should be changed and washed if they are soiled and on a routine basis.
  • The patient's environment should be cleaned routinely and when soiled with body fluids.
  • Notify doctors and other healthcare personnel who provide care for the patient that the patient is colonized/infected with a multidrug-resistant organism.



2013 Conference Photos Available Online

DDNA has more than 200 photographs of conference attendees and events now online on the Conference page of the website.  Enjoy!


Effects of Bullying Last Into Adulthood

Individuals with IDD can be easy targets for bullying, not only while in school, but also as adults living in the community.  A recent study partially funded by the National Institute of Mental Health found that, compared to those who had not been bullied, those who had been bullied had 14 times the risk of panic disorder, 5 times the risk of depressive disorders, and 10 times the risk of suicidal thoughts and behavior.  While this study did not specifically address the bullying of persons with IDD, it does recognize that a power imbalance usually is involved in which one child or a group of children torments another child who is considered “weaker.” (And adults in our society are not always kind to other adults who have intellectual disabilities.)  For more information about this study, go to:
http://www.nimh.nih.gov/news/science-news/2013/bullying-exerts-psychiatric-effects-into-adulthood.shtml


2013 ADA National Network Disability Law Handbook

The Southwest ADA Center in Houston, Texas, has published this free handbook, which provides basic information about disability rights and ways to find more information. Authored by Jackie Brennen, it includes topics such as: 
- An overview of the Americans with Disabilities Act
- Employment
- State and local governments
- Public accommodations
- Communication
- Transportation
- Service animals
- Ticketing and reservations
- Individuals with Disabilities Education Act
- Housing
- Social Security
- Air travel
- Civil Rights of Institutionalized Persons Act

To access a free copy of the handbook online, go to:  http://adata.org/lawhandbook


Suggest A Speaker for DDNA's 2014 Education Conference by June 18th

The DDNA Board of Directors is meeting on June 19th to plan DDNA’s 22nd Annual Education Conference.  We want to make sure that we provide the IDD nursing topics you are interested in learning about from the speakers you want to hear.

If you have heard an excellent speaker who you think would be of interest to your fellow DDNA members, please send their name and contact information to: admin@ddna.org so that we may follow-up.

If you wish to speak at the conference, you may submit an online speaker application at: https://www.ddna.org/speaker/apply

If you have any questions and want to speak with someone in the DDNA office, please feel free to call 800-888-6733, 9-5 ET, Monday-Friday.

Thank you for actively participating in DDNA’s efforts to offer up-to-date and informative IDD nursing education at our annual education conference.  We look forward to receiving your topic and speaker suggestions by June 18th.

   


ADHD and Childhood Autism

A study published in the June 5 issue of Autism has found that 30% of children with autism also displays signs of attention-deficit hyperactivity disorder.  The study's author Rebecca Landa, Director of the Center for Autism and Related Disorders at the Kennedy Krieger Institute in Baltimore, points out that children with autism who have attention problems, hyperactivity problems, or both, need to be evaluated  for ADHD and treated if necessary.  To read more about this study, go to: 
http://www.nlm.nih.gov/medlineplus/news/fullstory_137574.html


Memory Training May Benefit Children with Down Syndrome

A study, conducted by researchers at Down Syndrome Education International and and published in the American Journal on Intellectual and Developmental Disabilities, suggests that adaptive working memory training may be beneficial for young people with Down Syndrome.  Following 25 sessions using Cogmed Working Memory Training (which looks much video games) with children between 7-12 years of age, they found that on average these children achieved important gains in visuospatial short term and working memory compared to children who did not take the training.  Future research is needed to confirm this. For more information about this study, you can go to the website of Down Syndrome Education International at:  http://www.dseinternational.org/en-gb/news/2013/06/04/memory-training-study-down-syndrome/?dm_i=9MS,1JBDL,4KO22Y,599EN,1





Resources on Restraint and Seclusion

The new website "Stop Hurting Kids" has a free 28-minute film entitled "Restraint and Seclusion: Hear Our Voices" that you can access and watch online at:  http://bit.ly/14oNSrw  This film can be used for public awareness, professional development, teacher training or any other purpose that does not involve charging a fee.  Distribution of the film was supported by the US Substance Abuse and Mental Health Services Administration (SAMHSA).  You can also access numerous resources on the general use of restraints and behavior seclusion at: http://stophurtingkids.com/resources/




DIRECTOR OF HEALTH SERVICES

Description: AWS_Benchmark_process

DIRECTOR OF HEALTH SERVICES

Location: AWS/BHS Corporate Office in Fort Wayne, IN.

AWS|Benchmark Human Services, a large multi – state provider of services for people with ID/DD, is seeking a highly skilled nurse with ID/DD/MH experience, and who has strong clinical and programmatic leadership abilities. Duties include but are not limited to:

· Direct and supervise AWS health services system

· Maintain consistent company-wide and state specific health services in the residential and day service programs

· Ensure compliance with state and federal regulatory requirements

· Develop and maintain curriculum for health – related agency staff training

· Provide clinical supervision of nurses

· Supervise Manager of Health Services

· Collect, analyze and present health related quality measures concerning agency trends and quality outcomes and participate in compliance initiatives, surveys, accreditations, etc.

· Assist with policy development in new states

· Participate in various company committees including compliance, best practices, outcome measures, etc.

Requirements:

  • BSN, MSN is preferred

· 10 years nursing experience with some experience in the ID/DD field

· two years supervisory experience

· DDNA Certified preferred

· Ability to travel to various states

In return, AWS offers competitive salary, health insurance, life insurance, LTD, 401k Plan, profit sharing, tuition reimbursement, PTO and sick time.

Qualified and interested candidates should apply on line at www.awsusa.com or submit their resumes to Eric Weeks, Director of Human Resources at eweeks@awsusa.com.

Affirmative Action | Equal Opportunity Employer


2nd Call for Member News/Articles for June Newsletter

DDNA is now putting together the June newsletter. We need news and articles of interest to DD nurses . . . like you! The newsletter is YOUR opportunity to share information of interest with other DDNA members.

What you write does not have to be long - a paragraph will do just fine! And consider including a photograph, if available and appropriate. Don't worry about your writing being perfect, because we provide copy editing before publication. We encourage you to go to the newsletter page of the website at: https://www.ddna.org/pages/newsletter and look at “Current Issues.” We have provided them in two formats: a Full color “flipping” format or a black and white version (for optimal printing). Click on the issues to view them. Winter/Spring 2013 is our most recent past issue. You can also read past issues archived all the way back to 1993!

If you know individuals with IDD who would like to see their own art or writing published in our newsletter, consider sending it to us. We are delighted to include their work. In our last newsletter, we had a poem written by Donald, a man with I/DD and mental illness. The poem was sent to us, along with a picture of Donald, by Brandy Camperlino, a DDNA member, with Donald’s permission. Donald was excited to have his poem published, and sent DDNA a wonderful thank you for publishing it.

Please contribute! The deadline for submissions is

Wednesday, June 12th

We look forward to getting any emails from members with submissions for the newsletter!  


Study Shows Some Benefit from Minocycline Treatment in Chidren with FXS

Research done at the University of California Davis Medical Center have shown that minocycline treatment for 3 months in children with fragile X syndrome (FXS) was associated with greater benefits in global functioning when compared with placebo, although the clinical improvement was modest. Treatment with minocycline for 3 months was safe as almost all side effects were mild and no different than on placebo. Further studies including long-term follow-up of individuals with FXS treated with minocycline are warranted with a careful assessment of effects on dentition and the immune system. 

For more information go to: http://bit.ly/1198FNt  


FDA Safety Alert for Seizure Medication Potiga

The U.S. Food and Drug Administration (FDA) is warning the public that the anti-seizure medication Potiga (ezogabine) can cause blue skin discoloration and eye abnormalities characterized by pigment changes in the retina. FDA does not currently know if these changes are reversible. All patients taking Potiga should have a baseline eye exam, followed by periodic eye exams. FDA is working with the manufacturer to gather and evaluate all available information to better understand these events. FDA will update the public when more information is available.

Pigment changes in the retina have the potential to cause serious eye disease with loss of vision. It is not yet known whether the retinal pigment changes caused by Potiga lead to visual impairment, although several patients have been reported to have impaired visual acuity.

The skin discoloration in the reported cases appeared as blue pigmentation, predominantly on or around the lips or in the nail beds of the fingers or toes, but more widespread involvement of the face and legs has also been reported. Scleral and conjunctival discoloration, on the white of the eye and inside eyelids, has been observed as well. The skin discoloration generally occurred after four years of treatment with Potiga, but has appeared sooner in some patients. In some cases, retinal abnormalities have been observed in the absence of skin discoloration.

In light of this new safety information, all patients taking Potiga or about to start Potiga should have an eye exam, followed by periodic eye exams thereafter.  Potiga should be discontinued if ophthalmic changes are observed unless no other treatment options are available.  If a patient develops skin discoloration, serious consideration should be given to changing to an alternate medication.

Patients should not stop taking Potiga or any anti-seizure medication without talking to their health care professional, as stopping anti-seizure treatment suddenly can precipitate withdrawal seizures, a serious and life-threatening medical problem. 

--This information is from the FDA website.


Member Seeking Advice on IDD Summer Camp Nursing

If you have experience in summer camp nursing for individuals with I/DD, DDNA has a member who will be working with adults in this capacity for the first time this summer.  She is interested in articles, checklists, and advice on how to create a safe, healthy, and positive summer experience for these campers.  Please send your information to DDNA, and we will post it on our resource page for all members to see.  Thanks for sharing and supporting your colleague.


Call for Articles for DDNA’s June Newsletter

DDNA is now putting together the June newsletter. We need news and articles of interest to DD nurses . . . like you! The newsletter is YOUR opportunity to share information of interest with other DDNA members.

What you write does not have to be long - a paragraph will do just fine! And consider including a photograph, if available and appropriate. Don't worry about your writing being perfect, because we provide copy editing before publication. We encourage you to go to the newsletter page of the website at: https://www.ddna.org/pages/newsletter and look at “Current Issues.” We have provided them in two formats: a Full color “flipping” format or a black and white version (for optimal printing). Click on the issues to view them. Winter/Spring 2013 is our most recent past issue. You can also read past issues archived all the way back to 1993!

If you know individuals with IDD who would like to see their own art or writing published in our newsletter, consider sending it to us. We are delighted to include their work. In our last newsletter, we had a poem written by Donald, a man with I/DD and mental illness. The poem was sent to us, along with a picture of Donald, by Brandy Camperlino, a DDNA member, with Donald’s permission. Donald was excited to have his poem published, and sent DDNA a wonderful thank you for publishing it.

Please contribute! The deadline for submissions is

Wednesday, June 12th

We look forward to getting many emails from members with submissions for the newsletter!

   


Help Us Plan for DDNA's 2014 Annual Education Conference

DDNA’s goal in annual conference planning is to offer high quality education related to the nursing care of persons with intellectual and developmental disabilities.  The DDNA Board of Directors will be meeting next month to start conference planning for the 2014 conference.  We ask DDNA members to please recommend speakers you believe would be of interest to conference attendees.  We seek speakers with expertise in the care required to help maintain optimal physical and mental health and wellbeing for persons with I/DD.  If you know of a great speaker who you think would be appropriate for DDNA’s Annual Education Conference, please email their name and contact information to admin@ddna.org so that we may follow-up.  You may also submit an online speaker application at:  https://www.ddna.org/speaker/apply

We appreciate your willingness to actively participate in our efforts to offer the most up-to-date and informative education in I/DD nursing.  Thank you.

   


Deadline to Obtain CE Certificates for DDNA Conference is July 31st

If you want to receive CE credits for attending DDNA’s 21st Annual Education Conference held Philadelphia on April 27th – 29th, with the Preconference on April 26th, you must complete the online conference  evaluation by midnight on July 31st, 2013.  The evaluations will be permanently closed after midnight on July 31st. 

To access the session evaluations, go to: www.ddna.org/conference/evaluate.  Please note that you must be logged into the DDNA website with your username and password.

If you need help with this, please do not hesitate to call the DDNA office between 9 AM and 5 PM ET.

   


Ranking of States on Outcomes for Persons with IDD

UCP's annual report, The Case for Inclusion, ranks all 50 states and the District of Columbia (DC) on outcomes for Americans with intellectual and developmental disabilities (ID/DD).
This year's report shows that:

  1. All states have room for some improvement, but some have consistently remained at the bottom of the rankings;
  2. Despite economic strains, many states have made real improvements in the quality of services being provided;
  3. There is still work to be done in ensuring that people with ID/DD can enjoy the same freedoms and quality of life as all Americans.

For more information and to see how your state is rated, you can read UCP's annual report at: http://www.ucp.org/the-case-for-inclusion/2013/


Supporting Women with IDD in Managing Menstruation

The Centre for Developmental Disability Health in Victoria Australia has created a booklet that provides information to help health professionals support women with IDD to manage their menstruation and associated menstrual disorders.  To download a free copy of this booklet, go to:  http://www.cddh.monash.org/assets/supporting-women-gp.pdf


Thanks to All For a Great Annual Education Conference!

Many thanks to all attendees, sponsors, exhibitors, and speakers for a very positive and successful 2013 Annual Education Conference.  We appreciate everyone's effort, support, and expertise, and hope that you had the opportunity to network, learn, and get your IDD nursing batteries recharged.  We are already planning for next year in Orlando at the Rosen Plaza Hotel, so mark your calendars for May 2-4, 2014!


Latest Info from DHHS on the Affordable Health Care Act

The President released his FY 2014 budget this morning.  Attached is the link to the HHS summary at http://www.whitehouse.gov/sites/default/files/omb/budget/fy2014/assets/health.pdf


Aging and Down Syndrome: A Health and Wellbeing Guidebook

DDNA Member Sharon Oxx has shared with DDNA information she received from Dr. Julie Moran, who is the lead author of a booklet just released by the National Down Syndrome Society entitled "Aging and Down Syndrome: A Health and Wellbeing Guidebook."  Dr. Moran provided this information: "It's a very comprehensive resource and is rather one-of-a-kind in terms of resources available in the lay press.  Here's the link to the website that has the press release  http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Aging-and-Down-Syndrome-A-Health-Well-Being-Guidebook/ It's viewable online and hard copies are available free of charge.  Just follow the links at the bottom of the page on the NDSS website link above to order copies.  Please share this with your area nurses and anyone else who you think would like a copy.  I will be distributing them at my clinics as well. To accompany the release of this booklet, I also did a webinar for NDSS on this topic, so this may also be of interest for additional learning: http://www.youtube.com/watch?v=3yQc_7cjTDA 

 


DDNA Partnership with CDC's Clinical Outreach and Communication Activity (COCA)

When there are emerging health threats and/or need for emergency preparedness, it is important that DDNA members have up-to-date information about how to offer optimal care for the individuals for whom they provide care and services. For this reason, DDNA reached out to the “Clinician Outreach and Communication Activity (COCA)” center at the CDC. We discussed with them the importance of IDD nurses having access to information when there are national threats or emergencies, and we requested that DDNA become a partner association with COCA. The positive response that we received from them can be found below on this page. Click on the green “COCA Partner Spotlight” link to go right to their current page, which features DDNA. This would be a good page to bookmark in case there is ever a need for emergency preparedness. Below is the letter that we received from the CDC:

“As our newest COCA Partner, we are pleased to inform you that the Developmental Disabilities Nurses Association (DDNA) is featured in the April “COCA Partner Spotlight.”  Our partnership with DDNA is vital to COCA’s ability to communicate with development disabilities nursing professionals and share information on public health emergencies, CDC guidance, health alert messages, and training opportunities.

We look forward to strengthening our partnership with DDNA and increasing our outreach to development disabilities nursing professionals.

We value our partnership with DDNA and thank you for your continued support.

Loretta Jackson Brown

On behalf of CDC COCA,

Clinician Communication Team

Centers for Disease Control and Prevention

   


Silent Auction and 20/20 at DDNA Conference in Philadelphia

DDNA's 21st Annual Education Conference is just about three weeks away.  Can you believe it?!?  One of the events that attendees enjoy is our Silent Auction. We invite you to join in the fun and donate an item for the auction.  Your donation does not have to be expensive, but it does need to be non-perishable and able to fit in a suitcase -- so the winner can get it home!  What kinds of things do nurses like?  What's not to like about gift certificates, jewelry, candy, handmade items, trendy clothing accessories, small gift baskets . . . it may even be something you already have, but think someone else might enjoy a whole lot more than you do. . . like that bright orange art deco vase your aunt sent you for your birthday, which totally clashes with your chartreuse living room!  (Just make sure your aunt is not coming to visit you any time soon!) 

We also will be doing our traditional 50/50 drawing.  In past years, winners have won more than $500, so bring a couple dollar bills and take a chance.

If you have any questions, please feel free to email www.ddna.org by Friday, April 19th.  Thank you in advance you for generosity and support of DDNA!
 


DDNA 21st Annual Education Conference Fast Approaching!

The DDNA 21st Annual Education Conference on April 27th–29th is fast approaching.  If you have not yet registered and are planning to attend, this is a reminder that the regular conference registration fee of $440 is available until April 14th at midnight.  Starting on April 15th, the conference rate will increase to $475. You may register online on our before midnight April 14th at: https://www.ddna.org/conference/register Or fax your registration to DDNA at 407-426-7440 before midnight on April 14th.  To register by telephone before or on April 14th, call DDNA at 800-888-6733 between 9 AM -5 PM ET.

If you have not yet made hotel reservations, please be aware that the special hotel room rate of $139/night is available until April 1st.  So you have just a few days left to get this discounted rate.  Here is the link to the online hotel reservation site: http://doubletree.hilton.com/en/dt/groups/personalized/P/PHLBLDT-DDN-20130423/index.jhtml?WT.mc_id=POG

If you have any difficulty using the hotel online reservation website, you can call the Doubletree at 215-893-1600.  Ask for the reservation desk, and inform them that you are with the DDNA conference so that you get the discounted conference rate of $139.

If you have any questions about attending the conference, please feel free to email ddna.org or phone us at 800-888-6733. We will do our very best to help you. 

We look forward to seeing you in Philadelphia for an outstanding 2013 DDNA Annual Education Conference!

Mary Alice Willis, Executive Director

 


Aprll is Autism Awareness Month and World Autism Day

According to estimates from the CDC, nearly one in 88 children has been identified with an autism spectrum disorder (ASD). Early identification and intervention can help a child access services and learn new skills; however, most children are not identified until after they reach age 4 years CDC's "Learn the Signs, Act Early" program has tools to help parents and early childhood-care and education providers track children's developmental milestones and provides information about what to do if there is a concern. This program also offers resources for health-care providers, including the Autism Case Training course, which is available online for individual continuing education credit and as a classroom-based curriculum for pediatric residency programs. Additional information is available at http://www.cdc.gov/autism .  


Guidelines for Care and Support of People with IDD and Dementia

Our colleagues at AADMD have informed us that "Guidelines for Structuring Community Care and Support for People with Intellectual Disabilities Affected by Dementia" is now available for download from the March 2013 issue of the Journal of Policy and Practice in Intellectual Disabilities at: http://onlinelibrary.wiley.com/doi/10.1111/jppi.2013.10.issue-1/issuetoc


Education for Lifelong Health Series

DDNA member Liz Perkins has shared with us a link to the Florida Center for Inclusive Communities "Education for Lifelong Health Series."  It is aimed at individuals with mild intellectual disabilities to teach them about good health and reducing the risk of developing chronic health conditions.  The five fact sheets cover the topics of 1. Good health and hygiene, 2. Cancer, 3. Cancer Treatment, 4. Diabetes, and 5. Osteoporosis.  They can be downloaded free from the following link: http://flfcic.fmhi.usf.edu/docs/FCIC_EFLH_Complete_Series.pdf

Also, we would like to congratulate Liz for her recent promotion to Associate Director of the Florida Center for Inclusive Communities!


New Tools Help Health Providers Reduce Patients' Risk of Falls

Health care providers have known for a long time that falls among patients are a serious problem. But they haven't always agreed on the best way to prevent them. A new toolkit from the Agency for Healthcare Research and Quality (AHRQ) focuses on the challenges that hospitals face as they try to develop and sustain a fall-prevention program. In addition to helping hospitals gain support for this process, the toolkit describes the steps that organizations can take to put the best fall-prevention strategies into practice.

Another program is an AHRQ-funded project from a Wisconsin health system, a health technology company, and a university-based school of nursing. They developed a computerized program with four individual care plans, based on patients' risk for a fall and their ability to follow instructions on how to prevent one. The program helps nurses develop fall-prevention plans that match patients' needs and that can go in patients' electronic health records. 

Internet Citation: New Tools Help Health Providers Reduce Patients' Risk of Falls. February 2013. Agency for Healthcare Research and Quality, Rockville, MD.

To access these tools, go to: http://www.ahrq.gov/news/columns/navigating-the-health-care-system/020513.html


Last Day for Conference Early Bird Registration Midnight on March 20th

This is  a reminder that on March 21st, DDNA's 21st Annual Education Conference registration fee switches from the "early bird" special pricing of $395 to the regular conference pricing of $440. If you have any questions or concerns about registering for the conference, or if you would like help to register with a credit card, please call our office at 407-426-7440.  We hope to see you in Philadelphia!


Employment of Persons with IDD

This Policy Research Brief summarizes publicly-available data sources that provide information about the employment of people with intellectual and developmental disabilities. It provides important information about these data sources,including their purposes, key definitions, and where to access the public data. Using these data sources, a state-by-state comparison of employment outcomes is conducted toprovide readers with a picture of the employment landscape for people with intellectual and developmental disabilities.Finally, a discussion about how the data can be used, and the limitations of the data, is provided. The analysis was conducted at the University of Minnesota’s Research and Training Center on Community Living (RTC). It reviews data gathered in 2010 and 2011. This brief was authored by Derek Nord, Ph.D., Research Associate at the RTC. The study was supported by Grant #H133B080005 from the National Institute on Disability and Rehabilitation Research.  To access this report, you can go to the Institute on Community Integration at the UCEDD at the University of Minnesota at: http://ici.umn.edu/products/prb/221/default.html

 

Department of Education, to the RTC. 


The NIMH Director's Blog: "The Four Kingdoms of Autism"

The National Institute of Mental Health Director, Thomas Insel, has written a interesting blog about what he calls the "Four Kingdoms of Autism."  They are Illness, Identity, Injury, and Insight.  Is the conclusion that there is indeed no typical autism?  To read this thoughtful consideration of all the ways that autism is viewed, go to:  http://1.usa.gov/We4mFl



Important Information About Hotel Rooms at the Annual Conference in April

First the bad news:  On the night of Wednesday, April 24th, all available sleeping rooms at our conference hotel, the Hilton Doubletree in Philadelphia, have been booked.  However, there are still hundreds of rooms available on the 25th, 26th, 27th, and 28th.

Important: If you have been told by anyone, including hotel reservation services, that there are no hotel rooms available for the DDNA conference – this is obviously not true. We have hundreds of rooms available on every night, except Wednesday, April 24rd, which is two days before the preconference.

If you are registering online and enter April 24th as your first night’s stay, you will get a message from hotel reservation services that there are no rooms in the hotel from the 24th to the 29th.  This is not accurate. It is fully booked on the 24th, but if change your arrival date to April 25th, you will be able to register for the full conference online.

As you can imagine, this miscommunication has been most frustrating for us here at DDNA, and we have spoken with the hotel about ensuring that the registration process goes smoothly. If you have any trouble at all registering for a room at the conference hotel, please call DDNA at 800-888-6733, and we will look into it for you. 

Thank you for your patience and we look forward to seeing you in Phillie for our 21st Annual Education Conference.


Important Information About Certification Preparation Course at Conference

Are you planning to take the certification prep course or the certification exam at the annual DDNA Conference?

If you are planning to take the CDDN or DDC certification exam at the conference, we ask that you please send an email to mawillis@ddna.org notifying us as soon as possible. Also, please send us an email as soon as possible if you are planning to take the certification preparation course at the conference.

DDNA arranged for the conference hotel to set aside our customary number of hotel rooms on Wednesday, April 24th for those people who were going to take the certification preparation course on Thursday, April 25th. Unfortunately, a large number of DDNA members who are not taking the certification prep class at the conference booked early hotels rooms on the evening of April 24th. Because the hotel is at 100% occupancy on that night, the hotel is not able to provide DDNA with additional sleeping rooms on April 24th.

DDNA is making alternate arrangements for offering the certification prep course and the telephone triage course  at the conference. But in order to do so, we need an accurate count on the total number of people who plan to take either the certification prep course or the telephone triage course while in Philadelphia. We also need a count of people who are planning to take the certification exam at the conference.

In summary, here is the action that you need to take:

Planning to take certification prep course at the conference? Send us an email letting us know ASAP.

Planning to take the certification exam at the conference? Send us an email letting us know ASAP.

Thanks so much for your patience and understanding. We have a great conference planned and we are working hard to make sure you have a great experience.

Mary Alice Willis
Executive Director
 


Final Call for Nominations for Board of Director Seats

This is the third and final call for nominations for two seats on the DDNA Board of Directors. The first open seat is President-Elect. The President Elect serves for two years, then succeeds to the office of President, making this a four-year commitment to DDNA. The second seat is that of Secretary. The Secretary serves a three-year term on the Board.
If you are interested in serving on the Board of Directors, either as President-Elect or as Secretary, you must complete the required nomination form and mail it to: DDNA, PO Box 536489, Orlando, FL, 32854 OR fax it to DDNA at 407-426-7440. Candidates must be current members of DDNA. The nomination form must be received at DDNA by fax or mail no later than midnight on April 1st, 2013. Applications received after this date will be disregarded.
To access information about the election overview, schedule, Board mission, Board responsibilities, click on “About Us” in the menu bar at the top of the DDNA website. Then click on “Elections.” This will take to you the Elections pages on the DDNA website, where you can learn more about the schedule, process, Board mission, responsibilities of Board members, and access the nomination form.
The nomination form can be found on the DDNA website at:
http://ddna.org/downloads/nominationform.pdf Please note that you can print out the form, but because it is a .pdf file, you cannot save the completed form to your computer. We recommend that you print several copies when you finish completing the form, so you will have a copy for your records and a copy to send to DDNA.
Serving on the DDNA Board of Directors involves significant time and effort to carry out the duties of each office and to travel to quarterly in-person three-to-four day meetings. We advise you to review the General Time Commitment that is required of Board members at:
http://ddna.org/pages/elections_responsibilities Serving on the Board is also highly rewarding and an opportunity to contribute to the efforts of DDNA to provide education, support, and advocacy for nurses who provide care to persons with intellectual and developmental disabilities.   


Precursor Symptoms to Autism Detected in 6-Month-Old Infants

Early signs of autism can be detected in 6-month-old infants, suggested a National Institute of Mental Health (NIMH)–supported study published online this January in Biological Psychiatry.  Katarzyna Chawarska, Ph.D., at Yale University School of Medicine, New Haven, and her research team followed a group of infants from 3 months to 3 years of age.  The findings indicate that some of the first signs of ASD, such as limited visual attention to social scenes, can be detected very early in development, well before the emergence of diagnostic features. For more information about this study, you can go to the website of the National Institute of Mental Health at:  http://1.usa.gov/1292bnT


Job Opportunity for Director of Nursing in Nebraska

Job Opportunity for Director of Nursing in Nebraska

Under administrative direction, and within the scope of RN licensure, performs nursing work through planning, organizing and directing nursing and patient care services provided at the Beatrice State Developmental Center, an Intermediate Care Facility for the Developmentally Disabled located in Beatrice, Nebraska. Incumbent will manage the administration of care delivery systems for nursing/treatment services and ensure such services follow governing accreditation standards and/or certification and standard of care practices and regulations. Incumbent will manage a large professional and paraprofessional staff through subordinate nursing supervisors. Incumbent will work under the general direction of the Medical Director.

Interested candidates can apply at www.statejobs.ne.gov. For further information, please contact ernie.fry@nebraska.gov or becky.aganmencl@nebraska.gov.

 


2nd Call for Nominations for DDNA Board of Directors

This is the second call for nominations for two seats on the DDNA Board of Directors. The first open seat is President-Elect. The President Elect serves for two years, then succeeds to the office of President, making this a four-year commitment to DDNA. The second seat is that of Secretary. The Secretary serves a three-year term on the Board.
If you are interested in serving on the Board of Directors, either as President-Elect or as Secretary, you must complete the required nomination form and mail it to: DDNA, PO Box 536489, Orlando, FL, 32854 OR fax it to DDNA at 407-426-7440. Candidates must be current members of DDNA. The nomination form must be received at DDNA by fax or mail no later than midnight on April 1st, 2013. Applications received after this date will be disregarded.
To access information about the election overview, schedule, Board mission, Board responsibilities, click on “About Us” in the menu bar at the top of the DDNA website. Then click on “Elections.” This will take to you the Elections pages on the DDNA website, where you can learn more about the schedule, process, Board mission, responsibilities of Board members, and access the nomination form.
The nomination form can be found on the DDNA website at:
http://ddna.org/downloads/nominationform.pdf Please note that you can print out the form, but because it is a .pdf file, you cannot save the completed form to your computer. We recommend that you print several copies when you finish completing the form, so you will have a copy for your records and a copy to send to DDNA.
Serving on the DDNA Board of Directors involves significant time and effort to carry out the duties of each office and to travel to quarterly in-person three-to-four day meetings. We advise you to review the General Time Commitment that is required of Board members at:
http://ddna.org/pages/elections_responsibilities Serving on the Board is also highly rewarding and an opportunity to contribute to the efforts of DDNA to provide education, support, and advocacy for nurses who provide care to persons with intellectual and developmental disabilities.  


From NPR: A Life Defined Not By Disability, But Love

National Public Radio recently broadcast a story about a women with an intellectual and developmental disability who is raising an amazing daughter.  Her daughter is in a gifted program in high school and already planning her future in college.  This story can be found on the NPR website at: http://www.npr.org/2013/02/08/171382156/a-life-defined-not-by-disability-but-love

Many thanks to DDNA member Brandy Camperlino for sending us this wonderful reminder of the capacity of all people to experience and share love and wisdom.


Call for Speakers for APCCMN Conference in November 2013

If you are a nurse who has expertise in the care of children who have intellectual and developmental disabilities, and you are interested in sharing your knowledge, there is a call for speakers from the Association of Providers for Children with Complex Medical Needs.  The deadline for submission of a speaker application is March 15, 2013.  To request a speaker application, contact Lisa Bierly at lbierly@apccmn.com


Information from the Autistic Self Advocacy Network

Last year, the Autistic Self-Advocacy Network, along with Not Dead Yet and the National Council on Independent Living, held a Day of Mourning for people with disabilities killed by their relatives and caregivers.

Day of Mourning began as a response to the murder of George Hodgins, a 22-year-old autistic man from California, and to the way people were talking about his death. Far too often, when a disabled person is murdered by a caregiver, journalists write as though it is the disabled victim who has perpetrated a crime simply by existing. In discussing the killing, people say that we should feel sorry for the murderer, because they had to live with a disabled relative. When a disabled person is murdered, many people act as though the murder victim’s life, not their death, was a tragedy.

On March 30th, 2012, we held vigils in 18 cities to remember those we have lost, and to remind the world that their lives had value.

On March 31st, 2012, a 4-year-old autistic boy named Daniel Corby was drowned in a bathtub by his mother. 

There is so much work to be done to change public perceptions about the worth and the quality of our lives. That is why the Autistic Self-Advocacy Network will be holding Day of Mourning again this year on Friday, March 1st. And I need your help to organize vigils across the country.

The first time I organized a vigil, I was very scared to do it, but it was not as hard as I feared. If you are interested in leading a vigil in your area, you begin by finding a good spot for it, making sure you can gather a group of people there, and spreading the word to your local community. If you want to organize a vigil, contact me at  zgross@autisticadvocacy.org for instructions and support. I will help you find a location and to plan and publicize your event.

On March 1st, we will remember our dead and take a stand against the violence facing our community. I hope to see you there.

In solidarity,
Zoe Gross
Autistic Self Advocacy Network

   


2013 Call for Nominations for DDNA Vice-President and Secretary

This is the first call for nominations for two seats on the DDNA Board of Directors. The first open seat is President-Elect. The President Elect serves for two years, then succeeds to the office of President, making this a four-year commitment to DDNA. The second seat is that of Secretary. The Secretary serves a three-year term on the Board.
If you are interested in serving on the Board of Directors, either as President-Elect or as Secretary, you must complete the required nomination form and mail it to: DDNA, PO Box 536489, Orlando, FL, 32854 OR fax it to DDNA at 407-426-7440. Candidates must be current members of DDNA. The nomination form must be received at DDNA by fax or mail no later than midnight on April 1st, 2013. Applications received after this date will be disregarded.
To access information about the election overview, schedule, Board mission, Board responsibilities, click on “About Us” in the menu bar at the top of the DDNA website. Then click on “Elections.” This will take to you the Elections pages on the DDNA website, where you can learn more about the schedule, process, Board mission, responsibilities of Board members, and access the nomination form.
The nomination form can be found on the DDNA website at:
http://ddna.org/downloads/nominationform.pdf Please note that you can print out the form, but because it is a .pdf file, you cannot save the completed form to your computer. We recommend that you print several copies when you finish completing the form, so you will have a copy for your records and a copy to send to DDNA.
Serving on the DDNA Board of Directors involves significant time and effort to carry out the duties of each office and to travel to quarterly in-person three-to-four day meetings. We advise you to review the General Time Commitment that is required of Board members at:
http://ddna.org/pages/elections_responsibilities Serving on the Board is also highly rewarding and an opportunity to contribute to the efforts of DDNA to provide education, support, and advocacy for nurses who provide care to persons with intellectual and developmental disabilities.

 


NCBDDD 2013 Fellowship and Research Opportunities

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the CDC is pleased to announce the availability fellowship and research opportunities for 2013.  Information about the fellowship and research opportunities are available on the newly created Disability Research and Dissemination Center (DRC) website at www.disabilityresearchcenter.com   Both fellowship and research submissions are on-line submissions handled exclusively through the DRDC website.

NCBDDD Fellowship Opportunity:  The 2013 fellowship opportunity involves activities with the NCBDDD “Learn the Sign. Act Early” program, which supports early recognition of developmental delay and disability.  There are three components to the fellowship: a health communication campaign, initiatives to promote local collaborations, and research and evaluation to build capacity and overcome barriers to systems.  The Fellowship is in Atlanta, GA at the NCBDDD.  The deadline for submission is March 4th, 2013.  Please visit www.disabilityresearchcenter.com to learn more about the fellowship opportunity and submission process.

NCBDDDD Research OpportunitiesThere are 4 current individual research opportunities available through RFA’s that have been developed in collaboration with NCBDDD.  The 4 areas of funding are: child mental health, early identification of developmental delay, outcomes for children with hearing loss and improving screening for hearing loss in WIC programs.  The specific research projects are entitled:

·   Project to Learn about Youth – Mental Health (PLAY-MH)
·
  Learn the Signs. Act Early
·
  EHDI Developmental Outcomes Study
·
  Improving EHDI Loss to Follow-up/ Loss to Documentation through Screening at Women, Infants and Children (WIC) Certification Visits

The deadline for RFA submissions are March 15th, 2013.  Please visit www.disabilityresearchcenter.com to review the RFA’s and learn more about the submission process.  The Letter of Intent (optional, but encouraged to allow formation of review panels) is due February 15th, 2013.  Please contact info@disabilityresearchcenter.com for questions.

 


   


Teaching Tips for Giving an Insulin Injection

There are DDNA members who are responsible for assuring that unlicensed personnel know how to properly administer insulin injections to persons with I/DD.  MedlinePlus has a very helpful list of the steps that must be followed to promote safe administration of this medication.  Nurses who may find these instructions helpful in their teaching of unlicensed personnel can go to:  http://www.nlm.nih.gov/medlineplus/ency/patientinstructions/000660.htm


Menopause and Women Who Have I/DD

Do direct support staff who provide care and services for women with I/DD have a thorough knowledge of menopause, including signs and symptoms?  For that matter, do we as nurses know these signs and symptoms (although many of us have had the opportunity to experience them upfront and personal!).  Do we also know about preventing and managing post-menopause health issues in persons with I/DD, e.g., heart disease, diabetes, obesity, and incontinence.  And, most importantly, do women with I/DD understand this physical transition in their lives?

To learn about research done in Australia on this topic, you may access a .ppt presentation done by Julie Fraser and Pam Patterson from the Speak Out Advocacy Association of Tasmania, Australia, at:
http://bit.ly/117LP9Z

 



Prenatal Inflammation Linked to Autism Risk

Maternal inflammation during early pregnancy may be related to an increased risk of autism in children, according to new findings supported by the National Institute of Environmental Health Sciences (NIEHS), part of the National Institutes of Health.  Researchers found this in children of mothers with elevated C-reactive protein (CRP), a well-established marker of systemic inflammation.The risk of autism among children in the study was increased by 43 percent among mothers with CRP levels in the top 20th percentile, and by 80 percent for maternal CRP in the top 10th percentile. The findings appear in the journal Molecular Psychiatry and add to mounting evidence that an overactive immune response can alter the development of the central nervous system in the fetus.

“Elevated CRP is a signal that the body is undergoing a response to inflammation from, for example, a viral or bacterial infection,” said lead scientist on the study, Alan Brown, M.D., professor of clinical psychiatry and epidemiology at Columbia University College of Physicians and Surgeons, New York State Psychiatric Institute, and Mailman School of Public Health. “The higher the level of CRP in the mother, the greater the risk of autism in the child.”  For more information about this study from the National Institute of Environmental Health Sciences, go to: 
http://www.nih.gov/news/health/jan2013/niehs-24.htm


Tips on Daily Living Skills for Teens with IDD -- from Down Under

The government of South Australia has created a 3-page fact sheet is directed to parents and families. It is written at an eighth-grade level and presented in a large, easy-to-read font. The content is organized into the following sections:
1. Intellectual disability and daily living skills-provides some introductory ideas
2. Daily activities-provides a list of household tasks adolescents can become involved with, for example, making the bed or putting dirty clothes in the washing basket.

Next, the fact sheet presents several simple strategies for getting adolescents started with taking on household tasks, and for teaching the necessary skills (for example setting up step-by-step instructions for a complicated task).  The sheet provides a few tips on using praise, or even pocket money to encourage kids in taking on household tasks.  Finally, the fact sheet provides a few self-care tips for parents and caregivers as they take on the new role of being a teacher. 

To access these useful tips for teens with IDD, go to:  http://bit.ly/XFm6n0

This information has also been added to DDNA's Resource page in the "Transitions - Child to Adult" section. 


DDNA Conference Registration Open . . . And So is the Prison!

Registration for DDNA's 21st Annual Education Conference being held in Philadelphia, PA, is open and we are glad to see so many people registering. Information about the conference overview, schedule, registration, hotel and travel can be found on the DDNA website at: https://www.ddna.org/pages/conference

For more information about Philadelphia, click here: http://www.visitphilly.com/

If you haven’t yet received you conference brochure, you should be getting it in the mail any day now. To register for the conference online now, log onto the DDNA website with your username and password and go right to the registration page at: https://www.ddna.org/conference/register

Incidentally, have you even wanted to go to prison?!? The Board of Directors is planning a Sunday evening “excursion” to the infamous Easton State Penitentiary – America’s most historic prison. If you are interested in visiting what was once the most famous and expensive prison in the world, send an email to DDNA with your name and the word “Prison” in the message. We are interested in getting a count to see how many people would enjoy this historic experience. Here is a link to info about the penitentiary: http://www.easternstate.org/home

If you have any questions about the conference or if you are ready to register and would like help, please call DDNA at 800-888-6733. We look forward to seeing you in Phillie!!

 


Some Children with Autism Lose Autism Diagnosis

Some children who are accurately diagnosed in early childhood with autism lose the symptoms and the diagnosis as they grow older, a study supported by the National Institutes of Health has confirmed. The research team made the finding by carefully documenting a prior diagnosis of autism in a small group of school-age children and young adults with no current symptoms of the disorder.

The report is the first of a series that will probe more deeply into the nature of the change in these children’s status. Having been diagnosed at one time with an autism spectrum disorder (ASD), these young people now appear to be on par with typically developing peers. The study team is continuing to analyze data on changes in brain function in these children and whether they have subtle residual social deficits. The team is also reviewing records on the types of interventions the children received, and to what extent they may have played a role in the transition.

“Although the diagnosis of autism is not usually lost over time, the findings suggest that there is a very wide range of possible outcomes,” said NIMH Director Thomas R. Insel, M.D. “For an individual child, the outcome may be knowable only with time and after some years of intervention. Subsequent reports from this study should tell us more about the nature of autism and the role of therapy and other factors in the long term outcome for these children.”

The study, led by Deborah Fein, Ph.D., at the University of Connecticut, Storrs, recruited 34 optimal outcome children, who had received a diagnosis of autism in early life and were now reportedly functioning no differently than their mainstream peers. For comparison, the 34 children were matched by age, sex, and nonverbal IQ with 44 children with high-functioning autism, and 34 typically developing peers. Participants ranged in age from 8 to 21 years old. 

For more information, go to:  http://www.nimh.nih.gov/science-news/2013/study-documents-that-some-children-lose-autism-diagnosis.shtml


I/DD Nursing Education Offered by i-NET

The Illinois Network for Education and Training is offering a webinar entitled "Infectious Disease Update."  It will be available online on Thursday, January 24th at 3:30 PM to 5 PM.  The cost for members is $115; non-members is $150 (unlimited participation) and for individuals the cost is $19.99 and will provide 1.5 nurse contact hours.
The webinar is being taught by Barbara Bancroft, RN, MSN, PNP, and will provide participants with a better understanding of current issues in the world of infectious diseases, including information on transmission of diseases, drug side effects, and vaccines.
The link to register for this webinar is:  http://www.illinoisnetwork.org/?utm_source=+Bancroft1.7.12&utm_campaign=bancroft&utm_medium=email
If you have any questions about this webinar, difficulty registering, or problems linking into the webinar, contact i-Net Western Illinois AHEC at 217-223-0452.  Do not contact DDNA because we will not be able to help you with your questions or problems.


Free CDDN/DDC Certification Preparation Classes

Karen Green McGowan, DDNA’s President Elect, will be teaching two free certification preparation classes online for RNs and LPNs who are interested in becoming certified in the specialty of IDD nursing.
Dates and Times:
February 19th from 7 PM to 9 PM Eastern Time
March 19th from 7 PM to 9 PM Eastern Time

To register, email Karen Green McGowan at: karengreen1959@aol.com . This webinar will allow a maximum of 100 participants per session. Remember, the information presented at this webinar will direct your study, but will not take the place of it. Webinar content will include a review of the content from the October webinar, plus more information on psychotropic drugs and seizure medications.

Study and Get Prepared! For more information about certification in I/DD nursing, go to: https://www.ddna.org/pages/certification


DDNA 21st Annual Conference

DDNA's 21st Annual Education Conference: Registration Now Open

Registration for DDNA's 21st Annual Education Conference being held in Philadelphia, PA, is now open. Information about the conference overview, schedule, registration, hotel and travel can be found at: https://www.ddna.org/pages/conference

For more information about Philadelphia, click here: http://www.visitphilly.com/

Conference brochures are at the printers, and will be in the mail to you this week.

If you have any questions or if you are ready to register and would like help, please call DDNA at 800-888-6733. We look forward to seeing you in Phillie!!


Updated Population Report of People with Disabilities Released by U.S. Census Department

The Americans with Disabilities: 2010 Household Economics Studies has been updated in 2012 by Matthew W. Brault at the U.S. Census Bureau.  Naturally, this study includes lots of numbers and tables, along with an explanation of how the study was done.  Interestingly, while this report uses the term “intellectual disability,” the survey question asked whether respondents had “mental retardation.”

Other definitions of intellectual disability may include types of conditions not captured in this measure.
Source: U.S. Census Bureau, Survey of Income and Program Participation, May–August 2010. Here is a link to this report:  http://www.census.gov/prod/2012pubs/p70-131.pdf  


Native American Developmental Disabilities Needs Assessment

The Sonoran University Center for Excellence in Developmental Disabilities (UCEDD) at the University
of Arizona in conjunction with the Native American Research and Training Center (NARTC) performed
a needs assessment of selected American Indians and Alaska Natives (AI/AN) in the spring and summer of
2011. The purpose of the project is to provide Commissioner Sharon Lewis, Administration on Intellectual
and Developmental Disabilities (AIDD), with a snapshot of the AI/AN experience with DD in selected Tribal
and urban American Indian communities. Specifically, the report provides information about the availability of
services and support for individuals with developmental disabilities (DD) and their families, the needs of DD
tribal members and their families, and tribal members’ familiarity and contact with the DD Network agencies. For more information about the results of this needs assessment, go to: http://bit.ly/Qgqj3C


Lack of Care Coordination for People with Disabilities

Working-age adults with disabilities account for a disproportionately high amount of annual emergency department visitors, reports a comparison study from National Institutes of Health researchers. As emergency department care may not be the best to address non-urgent concerns and is higher in cost, finding a way to decrease these visits is of interest to many stakeholders. One of the first detailed looks at this population's heightened use of urgent care, the NIH study published online in Health Services Research on Dec. 26, analyzed pooled data from the Medical Expenditure Panel Survey. Researchers found access to regular medical care, health profile complexity and disability status contributed to people with disabilities' use of the emergency department. To address this disparity, the authors recommend enhanced communication between emergency department and primary care physicians, and tailored prevention and primary care programs.  For more information, go to the website of the National Institutes of Health at:  http://www.nih.gov/news/health/jan2013/cc-02.htm   You may also view a video on this topic at:  http://www.youtube.com/watch?v=ydb10shy06Y 




"And now we welcome the new year . . . "

"And now we welcome the new year, full of things that have never been . . . "

This is a quote from the modernist poet Rainer Maria Rilke, who often wrote of the difficulty of communion with the ineffable in an age of disbelief, solitude, and profound anxiety.  "Ineffable" means too great or extreme to be described in words. The first thoughts that came to mind when I read this line from Rilke were about DDNA's nurse members and the care of persons with IDD. As we welcome the new year, what things "that have never been" will now be in the world of IDD nursing?  Will the coming year be full of things that improve the lives of persons with IDD, or will it be full of things that cause disbelief, solitude, and profound anxiety for persons and families who live with IDD?  Hopefully, we will be welcoming improvements in research, knowledge, care, and compassion.  This is what I choose to believe . . . that the year 2013 will be full of things that have never been . . . and that these never-before-things will wonderfully continue to elevate both the practice of IDD nursing and the lives of people with IDD.  So, a very happy and hopeful new year to all from DDNA National!


NIMH Progress in Autism Research

Every year the Interagency Autism Coordinating Committee (IACC) updates its  Strategic Plan for Autism Spectrum Disorder Research, identifying progress and new opportunities across the range of autism spectrum disorder (ASD) research. Each year this task gets more difficult. In 2012, the speed of progress was so rapid that each draft of the Plan was out of date by the time the IACC reviewed it. The sheer volume of research was overwhelming. According to PubMed, there were over 1,000 ASD papers related to genetics or brain imaging since January 2011 – more than three times the number of papers from the same interval a decade ago.  What has been learned from this recent wave of research? A great deal . . . . click here for more information:  http://1.usa.gov/12ITsam


Results of Medication Aides Survey

Medication aides are unlicensed assistive personnel who administer medications. A survey was developed to provide insights into medication aide education, supervision, and work role. Items were derived by reviewing the literature and regulations. Data were analyzed by calculating percentages over all respondents, followed by breaking out data by type of work setting. In some cases, state regulations were incorporated to determine the percentage of responders who were performing tasks that regulations stated they should not perform. Survey responses varied by type of work setting; for instance, 6% in assisted living, 3% in nursing homes, 21% in other long-term care, and 10% in other facilities reported having no supervision. Also, 31% indicated they were allowed to administer as-needed medications without an assessment of the patient by a licensed nurse, and 5% indicated they were allowed to administer injectables, yet state regulations indicated they were not allowed to perform these tasks. Study implications are discussed.  The complete article on this study was published in the journal: Geriatric Nursing. 2012;33:454-464 
An expanded abstract can be found at:
http://www.medscape.com/viewarticle/776075?src=wnl_edit_medp_nurs&spon=24


Asperger's and Autism Not Linked to Violence

Despite media reports alleging that the gunman involved in the Connecticut school shootings had Asperger's syndrome, experts were quick to assert Sunday that there is no link between the condition -- a mild form of autism -- and violence. "There really is no evidence that links autism or Asperger's to violence," said Geraldine Dawson, chief science officer at the nonprofit advocacy group Autism Speaks and a professor of psychiatry at the University of North Carolina at Chapel Hill.  For more information on this issue, go to the following website of the National Institutes of Health:
http://www.nlm.nih.gov/medlineplus/news/fullstory_132295.html


Condolences to Families in Newtown, CT

DDNA offers our sincere condolences to all the families in Newtown, CT, who are suffering through such a sad event. For the families of the innocent young children and school staf who died, we pray for peace and healing in this time of enormous sorrow.  For those children and school staff who were injured, physically, mentally, and emotionally, we pray that they receive the care that they need to recover.  For the disturbed young man who did the shooting, we also pray that he may rest in peace. 


Free Fact Sheets from USF's Center for Inclusive Communities/UCEDD - Education for Lifelong Health

The Florida Center for Inclusive Communities recognizes that good health is vital to enjoy all other life activities. People with developmental disabilities often have difficulty accessing appropriate high quality healthcare oftentimes because health care providers lack training or familiarity with the supports people with developmental disabilities need. FCIC is addressing this issue by undertaking activities that either a) educate health care providers to be sensitive to special health needs of people with disabilities, or b) assist individuals and their caregivers to be proactive about knowing and communicating their own health needs across their lifespan. FCIC's health activities are coordinated by Dr. Elizabeth Perkins, a members of DDNA.  Here is a link to FCIC's website:  http://flfcic.fmhi.usf.edu/program-areas/health.html


What is Lujan Syndrome?

Lujan syndrome is a condition characterized by intellectual disability, behavioral problems, and certain physical features. It occurs almost exclusively in males. The intellectual disability associated with Lujan syndrome is usually mild to moderate. Behavioral problems can include hyperactivity, aggressiveness, extreme shyness, and excessive attention-seeking. Some affected individuals have features of autism or related developmental disorders affecting communication and social interaction. A few have been diagnosed with psychiatric problems such as delusions and hallucinations. Characteristic physical features of Lujan syndrome include a tall, thin body and an unusually large head (macrocephaly). Affected individuals also have a long, thin face with distinctive facial features such as a prominent top of the nose (high nasal root); a short space between the nose and the upper lip (philtrum); a narrow roof of the mouth (palate); crowded teeth; and a small chin (micrognathia). Almost all people with this condition have weak muscle tone (hypotonia). For more information about Lujan syndrome, go to the National Institutes of Health Genetic Syndromes References at:
http://ghr.nlm.nih.gov/condition/lujan-syndrome


Kids With Autism Need Better Psychiatric Outpatient Care

Children with autism are nine times more likely than other children to be taken to the emergency department for mental health problems, according to a new study. The issues include aggression; mood, anxiety and psychotic disorders; attempted suicide; and self-injury. The study also found that families with private insurance are 58 percent more likely to take children with autism to the emergency department for urgent mental health care, compared to families covered by state medical-assistance programs. Researchers analyzed data on nearly 4 million emergency department visits made by U.S. children aged 3 to 17 in 2008. Of those visits, more than 13,000 involved children with an autism spectrum disorder. Thirteen percent of the visits by kids with autism were psychiatric in nature, compared to 2 percent of all visits made by their peers. "This finding of higher rates of emergency room visits among children with autism demonstrates that many children with autism aren't receiving sufficient outpatient mental health care to prevent and manage the type of crises that are driving these families to seek urgent help," senior study author Dr. Roma Vasa, a child psychiatrist at the Kennedy Krieger Institute's Center for Autism and Related Disorders, said in an institute news release.  For more information about this study, go to:
http://www.nlm.nih.gov/medlineplus/news/fullstory_132050.html


New Studies Show Immune System Plays Role in Autism

Brain scans done on groups of men with autism show distinct differences in both the volume of specific regions and the activity of cells that signal a possible immune response, two new studies suggest. Brain scans done on groups of men with autism show distinct differences in both the volume of specific regions and the activity of cells that signal a possible immune response, two new studies suggest.  Scientists in England and Japan used MRI and PET (positron emission tomography) scans to examine brain-based anatomical and cellular variations in those with autism. But the disparities -- while offering a deeper glimpse into the little-understood developmental disorder -- raised more questions about its cause and treatment that only further research can answer. The studies were published online in this week's issue of the journal Archives of General Psychiatry. For more information, go to: 
http://www.nlm.nih.gov/medlineplus/news/fullstory_131778.html


Possible Link Between Air Pollution and Autism Risk

Children exposed to air pollution from traffic and other sources while in the womb and during their first year may be at an increased risk for autism, a new study suggests. Infants exposed to the highest levels of air pollution were three times more likely to develop autism than those exposed to the lowest levels, researchers found. "There is evidence that the immune system might be associated with autism, and pollution affects these same pathways," said lead researcher Heather Volk, assistant professor of preventive medicine at the University of Southern California, in Los Angeles. For more information about this study, you can go to the website of the National Institutes of Health at: http://www.nlm.nih.gov/medlineplus/news/fullstory_131656.html



Deadline for December DDNA Newsletter Articles is November 25th!

It's time to put together the DDNA December newsletter.  We would like you to be a newsletter contributor! This is an opportunity for you to share information of interest with other DDNA members. For example, have you written a paper about an IDD-related topic for school or work? Have you recently learned something that you think would be of interest to other IDD nurses? Have you done a study or research in IDD nursing? Or have you found a way to make a difference in the life of a person with IDD? Has a person with IDD made a difference in your life? 

Also, if you know person with IDD who likes to write or draw, and would like to see his or her work published in our newsletter, we would be pleased to provide that opportunity with permission of the author.

What you write does not have to lengthy – even a paragraph will do. And you may include a photo or graphic, if available and appropriate. To put it simply . . . a newsletter needs news and information. Don't worry about your writing being perfect, because we copyedit before publication. Please contribute!

In case you are unaware, we have archived every one of DDNA’s newsletters all the way back to 1993 on the newsletter page of the website, preserving this history of DDNA as an association. Hopefully, what you find there will inspire you to write about IDD nursing today, because what you write today will become part of DDNA’s history in the future. If you would like to see the past copies of the newsletters, log onto the DDNA website with your username and password, go to the “Newsletter” page, and scroll down to Archived Issues.

Most important: Remember the deadline for submissions for publication in the December 2012 newsletter is November 25th.  Many thanks in advance to all who contribute!



Need CE for CDDN or DDC Recertification?

The American Academy of Developmental Medicine and Dentistry is offering a free, 12 credit-hour webinar series based on the first internationally vetted curriculum in Developmental Medicine created in the United States. This series is designed to enhance the practice skills of primary care physicians and residents who would like to provide better care to their adult patients with developmental disabilities.  A total of up to 12.0 credit hours are available, at no cost, for those who participate in all of the webinars.  The recordings of these webinars are available at the link below.  DDNA will accept certificates of completion from these seminars toward CDDN or DDC recertification.  You will receive a certificate after completing the course, a short quiz and evaluation.  You must include the certificate you receive when you mail in your certification renewal packet.  The link to the webinars is:  http://aadmd.org/page/pedd-webinar-series  


SAVE THE DATE! DDNA's 21st Annual Education Conference April 27-29, 2013

DDNA's 21st Annual Education Conference is being held at the Doubletree by Hilton Philadelphia Center City in April, 2013. The Preconference will be on Friday, April 26th, and the Conference will be from Saturday April 27th-Monday April 29th. We are again offering two full-day sessions on Thursday, April 25th: one on Certification Preparation taught by nurse experts who participated in creating the certification exam, and one on Telephone Triage taught by Kathleen Keating, an expert on this important subject for IDD nurses. Our pre-conference keynote speaker will be Sharon Lewis, the Commissioner of the Administration on Intellectual and Developmental Disabilities at the Health and Human Services Administration on Community Living in Washington, DC. 

DDNA is currently pulling together an impressive roster of speakers on topics -- ranging from a pre-conference that will focus on all the transitions experienced across the lifespan of a person with IDD to our final day’s session, which will be presented by the always hilariously informative Barbara Bancroft on the “Interpretation of Lab Tests with a Pharmaceutical Focus.”  (Doesn’t sound humorous, but trust us, you will learn by laughing at this session.) We also have many clinical sessions, and Lance Wilcox will be back with a nursing skills lab using Laerdal manikins, for those who would like to brush up on bedside nursing skills.  Also back this year by popular demand will be Ann Pooler, who will discuss “Self-Advocacy Ethics and Boundaries” in a special half-day session on Saturday.

You be receiving your conference brochure within the next couple of months, and we will be putting information about the various speakers and sessions up on the conference page of the website as it becomes available to us. We hope to see all DDNA members in Philadelphia in April! Any questions, feel free to call DDNA Headquarters 9-5 ET M-F at 800-888-6733.

   


New Resource Link Added

DDNA has added a new resource on epilepsy from the Department of Veteran's Affairs.  Go to our Resource Page and click on Seizure Care in the topic list at the top of the page.  Please note:  You must be logged in with your username or password to access.


Heavy Prenatal Alcohol Use Linked to Childhood Brain Development Problems

Heavy drinking during pregnancy disrupts proper brain development in children and adolescents years after they were exposed to alcohol in the womb, according to a study supported by the National Institutes of Health. The study is the first to track children over several years to examine how heavy exposure to alcohol in utero affects brain growth over time.  Using magnetic resonance imaging (MRI) scans, researchers found that brain growth patterns in children whose mothers drank heavily while pregnant differed from normal patterns of development seen in children who were not exposed to alcohol before birth.  To view the abstract for this study, go to:  http://www.jneurosci.org/content/32/44/15243.abstract 



Kudos to John Franklin Stevens for Taking a Stand

John Franklin Stevens is a 30-year-old Special Olympics athlete and global messenger who recently took a stand against the use of the R--word by someone in the media.  He wrote a letter to this media person that explained the inappropriateness of this word and how it is insulting to people with intellectual disabilities.  His letter is articulate, well-written, and demonstrates his ability to educate ignorant people about what it means to be a human being who just happens to have disability. To read his letter, you can go to the website of Special Olympics at:  http://specialolympicsblog.wordpress.com/2012/10/23/an-open-letter-to-ann-coulter/


Inappropriate Media Use of the R-Word

Recently you may have heard that a television “news personality" used a demeaning term that refers to individuals with intellectual disabilities.  DDNA has chosen not to dignify this woman's poor behavior and lack of humanity, much less give her the public attention that she craves, on the home page of our website.  If you are interested in this issue, please go to the Ethical Issues in I/DD Nursing forum on the forum page of this website.  You will need to be logged in with your DDNA username and password.   


May You All Be Safe During Hurricane Sandy

For those of you who will be affected by Hurricane Sandy, DDNA's thoughts and prayers are with you and the individuals for whom you provide nursing care. Stay safe! 


DDNA Member Looking for Info on Use of Botox for Spasticity

If you are knowledgeable about the therapeutic use of Botox, it would be appreciated if you could take a minute to share your knowledge.  Login to DDNA with your username and password, and go to "Cerebral Palsy" on the Forums page.  A fellow member has posted a question.

HERE IS THE POST.

"Hi, I am working with a child that is going to be having Botox to the calf and hamstring muscles. This is the first time I have cared for someone receiving Botox for the purpose of greater leg/muscle movement. I was wanting teaching tips for the family and education for myself as well. Does Botox help also reduce clonus? How long does this typically last? Any adverse effects to watch for? How soon does it typically take to see full effect? Does it always work? What makes someone a good candidate for Botox? Can it also be used in the arms? Any info will be appreciated."

Thanks in advance from DDNA to those of you who respond!



Autism and Schizophrenia Share a Genetic Link

ASD appears share a root cause with other mental illnesses, including schizophrenia and bipolar disorder according to new research by Dr. Mark Weiser of Tel Aviv University's Sackler Faculty of Medicine and the Sheba Medical Center. At first glance, schizophrenia and autism may look like completely different illnesses, he says. But closer inspection reveals many common traits, including social and cognitive dysfunction and a decreased ability to lead normal lives and function in the real world.

Studying extensive databases in Israel and Sweden, the researchers discovered that the two illnesses had a genetic link, representing a heightened risk within families. They found that people who have a schizophrenic sibling are 12 times more likely to have autism than those with no schizophrenia in the family. The presence of bipolar disorder in a sibling showed a similar pattern of association, but to a lesser degree. A scientific leap forward, this study sheds new light on the genetics of these disorders. The results will help scientists better understand the genetics of mental illness, says Dr. Weiser, and may prove to be a fruitful direction for future research. The findings have been published in the Archives of General Psychiatry. For more information, go to:
http://www.aftau.org/site/News2?page=NewsArticle&id=17324


FDA Approves Fycompa to Treat Seizures

The U.S. Food and Drug Administration today approved Fycompa (perampanel) tablets to treat partial onset seizures in patients with epilepsy ages 12 years and older.  Partial seizures are the most common type of seizure seen in people with epilepsy. Epilepsy is a brain disorder in which there is abnormal or excessive activity of nerve cells in the brain. Partial seizures affect only a limited or localized area of the brain, but can spread to other parts of the brain. Seizures cause a wide range of symptoms, including repetitive limb movements (spasms), unusual behavior, and generalized convulsions with loss of consciousness.  “Some people with epilepsy do not achieve satisfactory seizure control from treatments they are currently using,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “It is important to have a variety of treatment options available for patients with epilepsy.”  Results from three clinical trials showed improvement in seizure control in patients taking Fycompa compared with those taking an inactive pill (placebo). 

The most common adverse reactions reported by patients receiving Fycompa in clinical trials include: dizziness, drowsiness, fatigue, irritability, falls, upper respiratory tract infection, weight increase, vertigo, loss of muscle coordination (ataxia), gait disturbance, balance disorder, anxiety, blurred vision, stuttering (dysarthria), weakness (asthenia), aggression, and excessive sleep (hypersomnia).

For more information about this newly approved seizure medication, go to the FDA website at: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm325038.htm



CMS Webinar on Medicare, Medicaid, and Children's Health Insurance Programs: Oct 24th, 3 PM ET

CMS’ Division of Training is hosting a webinar for people who would like to expand their knowledge about Medicare. This program is designed for new partners and counselors with limited program knowledge who would like to gain foundation level knowledge about the Medicare , Medicaid and Children’s Health Insurance Programs, and key resources and tools available to effectively counsel beneficiaries.  And, if the material is not new to you -  it could just be a really good re-refresher.  Please join us for the next session of our series of “Getting Started” webinars on Wednesday, October 24, 2012 at 3:00 pm ET.

You can log on to https://webinar.cms.hhs.gov/partneroctober/ and dial into 877-267-1577, meeting ID 0243, to join this session.  You will need to access both formats for full participation.

Please feel free to share this information with partners and colleagues and thank you for your continued support.-- Janet Miller, MPA, Office of Public Engagement, Centers for Medicare & Medicaid Services

Janet

Janet Miller, MPA

Division of Strategic Partnerships

Partner Relations Group

Office of Public Engagement

Centers for Medicare & Medicaid Services

7500 Security Boulevard

Baltimore, Maryland 21244

410-786-2157

   


Management of Acute Behavioral and Psychiatric Emergencies

Our colleagues at the American Academy of Developmental Medicine and Dentistry are proud to offer a new webinar series on emergency and hospital care for people with intellectual and developmental disabilities. This eight-part series will be presented live from 6:30 pm to 8:00 pm, Eastern time (US) beginning on October 25th.  Each webinar is accredited by the American Academy of Family Physicians for 1.25 hours of prescribed credit (recognized by the AMA as equivalent to Category 1 credit). A total of up to 10.0 credit hours are available, for those who participate in all of the webinars. Webinars will be archived for those unable to view them live. The cost is $10 for each webinar.  Below you will find more information about the first webinar in this series.


Title: Management of Acute Behavioral and Psychiatric Emergencies Part 1

Date: Thursday, Oct 25, 2012 6:30 PM - 8:00 PM EDT

Individuals with Intellectual and Developmental Disabilities (IDD) often have complex and fragile health issues which commonly result in the need for acute health interventions. The ability to provide accurate and safe health practices in an acute health emergency is often very challenging due to a number of circumstances including language barriers, miscommunication, lack of chronic disease data, as well as a lack of training by health professionals of the complexities of health issues in those with IDD. Health outcomes, quality of life, support staff and family burden as well as a significant economic strain could be alleviated by the creation of educational events and the development of standards of care practices.

Presenters: Lucille Esralew, Ph.D. Clinical Administrator SCCAT & S-COPE, Trinitas Regional Medical Center and Yona Lunsky, Ph.D. Associate Professor, University of Toronto, Department of Psychiatry will be presenting.

This Webinar is appropriate for anyone who supports and cares for someone with IDD including self-advocates, families, DSP's, psychologists, therapists, support agencies, and healthcare providers.  

A brief Q & A will follow the presentation. 

This webinar is accredited by the American Academy of Family Physicians for 1.25 hours of prescribed credit (recognized by the AMA as equivalent to Category 1.25 credits). This webinar will be archived for those unable to view it live.

Listeners will be able to identify: 

  • Common presenting issues (medical and behavioral) in the emergency department for people with intellectual and developmental disabilities and differences between these two types of emergencies
  • Associated variables and outcomes for these two types of emergencies
  • Predictors of why some people with intellectual and developmental disabilities go to hospital when in crisis whereas others resolve it outside of hospital
  • How to advise people with intellectual and developmental disabilities and those who care for them to prepare for emergency visits and follow up after they occur

The cost of this webinar is $10.

Here is the link to register:  https://aadmd.org/civicrm/event/register?reset=1&id=51


Rights of Individuals with IDD to Become Parents

The National Council on Disabilities has just released a report with a goal of advancing understanding and promoting the rights of parents with disabilities and their children. The report provides a comprehensive review of the barriers and facilitators people with diverse disabilities—including intellectual and developmental, psychiatric, sensory, and physical disabilities—experience when exercising their fundamental right to create and maintain families, as well as persistent, systemic, and pervasive discrimination against parents with disabilities. The report analyzes how U.S. disability law and policy apply to parents with disabilities in the child welfare and family law systems, and the disparate treatment of parents with disabilities and their children. Examination of the impediments prospective parents with disabilities encounter when accessing assisted reproductive technologies or adopting provides further examples of the need for comprehensive protection of these rights.  To access this report, go to:  http://www.ncd.gov/publications/2012/Sep272012/


Surveys of States: Systems of Care for Persons with IDD

Innovations in the structure and financing of services for individuals with intellectual and developmental disabilities (I/DD) have been slow to take hold in Medicaid programs across the country. Barriers such as budget reductions, litigation, and stakeholder opposition to change hamper states’ ability to focus on system redesign. This brief describes the results of a survey of state I/DD directors regarding their current delivery systems and planned innovations for individuals with I/DD. The survey results can help inform state decision-makers as they move toward implementing innovative systems of care for I/DD populations.

This brief was developed by CHCS (Center for Heatlh Care Strategies, Inc.) and can be accessed at the following website: 
http://www.chcs.org/usr_doc/IDD_State_Priorities_and_Barriers_Snapshot2_082812.pdf


Have You Been Getting Emails From DDNA?

DDNA sends what we call "Email Blasts" to members through a service called "Constant Contact."  These emails contain information about DDNA activities, events, education programs, elections, conferences, certification and membership renewal reminders, etc.  In fact, last week we sent two email blasts about free DDNA-sponsored certification preparation webinars.  If you did not receive these emails from DDNA, it is possible that we do not have your most up-to-date and preferred email contact information and/or that our emails have been blocked from your computer.  If this is the case, you are missing out on information that could be of interest to you from DDNA.

So, if you have not been receiving email from DDNA and want to make sure that you do in the future, please email your name and the email address you would like us to use to reach you to: admin@ddna.org 

If your employer blocks some emails, you can send us your personal email address.  We keep these confidential and do NOT disclose or share them with anyone outside of the DDNA office without your express permission.


Trends and Challenges in Publicly-Financed Care for Persons with IDD

This report on trends and challenges is part of Center for Health Care Strategies’ Innovations in Systems of Care for Individuals with Intellectual and Developmental Disabilities series, which was developed to help state and other policymakers identify and implement systems of care that improve outcomes for individuals with intellectual and developmental disabilities, their families, and their communities. The publications, supported by Schaller Anderson, an Aetna company, provide policy and technical resources to guide program identification and implementation. The Center for Health Care Strategies (CHCS) is a nonprofit health policy resource center dedicated to improving health care access and quality for low-income Americans. CHCS works with state and federal agencies, health plans, providers, and consumer groups to develop innovative programs that better serve people with complex and high-cost health care needs. For more information about this report, go to:  http://www.chcs.org/usr_doc/IDD_Service_Delivery_Systems2_082812.pdf



Nearly Half of Children with Autism Wander or 'Bolt' From Safe Places

A study published October 8 in the journal Pediatrics found that nearly half of children with autism are reported to wander or "bolt," and more than half of these children go missing. Led by researchers from the Interactive Autism Network, the nation's largest online autism research initiative and a project of the Kennedy Krieger Institute, this study provides the most comprehensive estimate of elopement occurrence in a community-based sample of more than 1,200 children with autism.  To read more about these study results, go to the website of the Journal of the American Academy of Pediatrics at:  http://bit.ly/RLrO7t



Genes Linked to Severe IDD Not Necessarily Inherited

New research suggests that severe IDD is caused by random genetic mutations that are not passed down from parents. Severe IDD, also known as nonsyndromic mental retardation, is the most common form of mental retardation. Children or adults with the condition have no physical abnormalities, but have IQs of less than 50.  It affects up to 2 percent of children worldwide.  Joseph Devaney, principal investigator at the Center for Genetic Medicine Research at the Children's National Medical Center in Washington, D.C., said that the new technology allows researchers to dig deeper into genes.  Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at Steven and Alexandra Cohen Children's Medical Center of New York in New Hyde Park, said this research should be reassuring for parents. "It's not because of a single drink of alcohol you took during pregnancy or a stumble down the stairs -- these are new genetic mutations that appear for the first time in the affected child," he said.  These new gene screens do identify a host of mutations, and the challenge is trying to determine which ones play a causative role and which ones don't, he added.   For more information, go to the website of the National Institutes of Health at:
http://www.nlm.nih.gov/medlineplus/news/fullstory_129892.html


Info About Free Webinar Oct 17 on Genetic Factors Contributing to Disability

Southeast Regional Consortium and AUCD Presents! Genetic Factors Contributing to Disability.
Wednesday, October 17, 2012 2:00 PM EST - 3:00 PM EST  Location: Online  Cost: Free  Webinar Objectives: This webinar is one of a series of webinars developed by LEND and UCEDD programs within the Southeast Region Consortium.  The objectives of this webinar are to:

  1. Appreciate how genetic and genomic medicine is impacting the field of developmental disabilities.
  2. Compare and contrast three types of clinical genetic tests that are routinely performed in individuals with developmental disabilities, including cytogenetic, molecular and biochemical testing.
  3. Discuss selected examples of genetic conditions that cause developmental disabilities.
  4. Discuss the indications, benefits and limitations, and process for interpreting clinical genetic testing.

Webinar Description: This webinar will begin with a brief overview of the recent history of genetic and genomic medicine, with special emphasis on the rapid pace with which discoveries have been made in this burgeoning field.  An area that has experienced considerable progress is the breadth of genetic testing that is available for individuals with developmental disabilities.  Therefore, a significant portion of the webinar will be devoted to a discussion of the most common genetic tests that can be utilized in the evaluation of individuals with developmental disabilities.  This discussion will include the indications, benefits and limitations, and process for interpreting clinical genetic tests.  Selected common genetic conditions will also be reviewed briefly.

Speaker: Tyler Reimschisel, MD
Dr. Tyler Reimschisel is Assistant Professor of Pediatrics and Neurology and Director of the Division of Developmental Medicine and the Center for Child Development in the Department of Pediatrics at Vanderbilt University School of Medicine.  He is the Associate Director of the Vanderbilt LEND at the Vanderbilt Kennedy Center.  As a biochemical geneticist and child neurologist, his primary clinical interests include the evaluation and management of children with inborn metabolic diseases and other genetic conditions that cause neurodevelopmental disabilities, such as global developmental delay, intellectual disability, autism, epilepsy, and cerebral palsy.  He also serves as the Associate Director of the Pediatric Residency Program at Vanderbilt.

For more information and to register visit:http://bit.ly/Svhdhx 

Many thanks to our colleagues at AADMD for passing this information along to DDNA.


Across the States 2012- Profiles of Long Term Supports and Services

This is the ninth edition of the AARP Public Policy Institute’s state long-term services and supports reference report. Here is an excerpt from the AARP's description: "Published for the past 18 years, the Across the States series was developed to help inform policy discussions among public and private sector leaders in long-term services and supports throughout the United States. Across the States 2012 presents comparable state-level and national data for more than 140 indicators, drawn together from a wide variety of sources into a single reference. This publication presents up-to-date data and is displayed in easy-to-use maps, graphics, tables, and state profiles."

Across the States 2012 comes in two volumes, both are available in full text under the "Web links" tab above:

*A full, 370 page report with an overview of key findings and trends, maps and graphs, and individual profiles for each state, the District of Columbia, and the nation as a whole. The full report provides a comprehensive picture of long-term services and supports in each state.

*A 92 page executive summary with an overview of key findings and trends, and ranking tables for each indicator, such as percentage of Medicaid long-term services and supports spending for older people and adults with physical disabilities going to home and community-based services. This permits readers to easily see variations among states.

For more information, go to the following website: http://aarp.us/QLX1ZQ  


Many Children with Autism Have Other Health Problems

Many children with autism have interrelated health problems that can have a significant impact on their home and school lives, a new study finds. Researchers at the University of Missouri looked at nearly 3,000 children with autism and found that nearly one-fourth also had chronic gastrointestinal problems such as constipation, abdominal pain, bloating, diarrhea and nausea.

The children with the chronic gastrointestinal problems also had anxiety and so-called "atypical sensory responses," which are heightened reactions to light, sound or particular textures, according to the study, which was published recently in the Journal of Abnormal Child Psychology. For more information go to the National Library of Medicine at:  http://1.usa.gov/PG6fDJ


Persons with IDD More Likely to Have Poor Dental Health

There will be a free webinar on Wednesday, October 10th on access (or lack thereof) to dental health for persons with disabilities.  Access information to this webinar is posted below.  Thanks to AADMD for sharing this information with DDNA.  See below for more information:

Registration is now open for the Disability Funder's Network free webinar on oral health.

The webinar will be held on Wednesday, October 10th at 1:00pm Eastern Standard Time.

Register online at: Pulling Teeth http://tinyurl.com/8exgvh3

About the Webinar

Oral Health access is a problem for many populations, but for people with disabilities, challenges are significant. The webinar will feature presentations that look at the overarching and immediate issues people with disabilities face when trying to access care. The panel will include a discussion of the Affordable Care Act and other federal/state efforts and offer viable strategies that can be funded in the immediate future to provide this necessary healthcare.

Speakers include:

Moderator: Barbara Sieck Taylor Executive Director, Grantmakers of Western Pennsylvania

Panelist Include:

Dr. Steven Perlman, President of the American Academy of Developmental Medicine and Dentistry

Mary Anderson Hartley, Manager, ACHIEVA's Disability Healthcare Initiative

Lynne O'Hara, Executive Director, Special Hope Foundation

Kristy Trautman, Executive Director, FISA Foundation

This webinar is free and open to the public, and would be of special interest to funders as well as dental professionals, people with disabilities and their families, safety net providers, and advocates.

To learn more about the Disability Funders Network, please visit our website at, http://www.disabilityfunders.org/

A special Thank You to collaborating partners ACHIEVA and FISA Foundation.

Sincerely,

Kim Hutchinson
President/CEO
Disability Funders Network 


Fall Newsletter is Now Available

The September issue of the DDNA newsletter is now available to members on the "Newsletter" page of this website.  If you are not a member of DDNA and would like more information about our association of nurses who provide care and services for persons with intellectual and developmental disabilities, there is lots of information on this website, or you may give us a call.  We would be glad to answer any questions you might have.  The newsletter is available at: http://ddna.org/pages/newsletter


Interventions For Preventing Falls in Older People Living in the Community

There is now strong evidence that some interventions can prevent falls in people over the age of 65 who are living in their own homes (even if these are group homes or other living situations for persons with IDD). However, the researchers who reached this conclusion say that care is needed when choosing interventions, as some have no effect. So you do not waste your time with interventions which are ineffectual, it would be smart to look at the research that shows what does work.  The full details are published this month (on Spetember 12, 2012) in the Cochrane Library. This is an update of a previous report that contains data from 51 additional trials, enabling the authors to reach many more conclusions.  For access to all this information about fall prevention in older adults, go to the website:  http://bit.ly/OGFLk6


CMS Update on Affordable Care Act Implementation

Join CMS for the first in a series of monthly conference calls for an update on Affordable Care Act (ACA) implementation efforts that impact doctors, nurses, hospitals and other providers of health care. The monthly "ACA Implementation Update for Providers" will review recent announcements from HHS and its agencies, explore one or two topics with senior HHS officials and provide an opportunity for you to ask questions and share feedback. These update calls will be held on the second Thursday of the month at 2pm ET. The call is closed to the press – but all stakeholder and interested parties are welcome to attend. The first call will be on September 13th at 2pm ET.   

WHAT:  Affordable Care Act Implementation Update for Clinicians, Hospitals and other Healthcare Providers

TOPIC:  Medicaid Expansion with Cindy Mann - CMS Deputy Administrator and Director of the Center for Medicaid and CHIP Services (CMCS) 

DATE: September 13th at 2pm ET 

DIAL IN:  1-888-455-2963  Passcode:  2954962 

 For those who are not able to join on the 13th at 2pm – a recording will be available after the call for 30 days by calling 800-570-8799 (no passcode needed). The next ACA Implementation Update for Providers is currently scheduled for Oct 11th at 2pm ET.  


Ohio Waivers Do Not Pay For Nursing Care

To all nurses in Ohio:  One of your fellow IDD nurses in the state of Ohio has posted the following question on DDNA's forum page: "Everyone knows that individuals with I/DD have a better quality of life when nurses are involved with them, however, at least here in Ohio, the waivers do not pay for nursing care. Has anyone else been frustrated about this? What can we do?"  If you have an opinion or suggestions for this nurse, go to:
http://ddna.org/forums-viewtopic.php?topicid=223


Antipsychotic Medications for Children

This summary discusses using antipsychotic medicines to treat psychiatric conditions in children, including children and adolescents with IDD. It explains what medical research says about the benefits and possible side effects of these medicines when taken by children. This summary does not discuss other medicines to treat psychiatric conditions or non-medicine treatment options. It can help you talk with your child’s doctor to decide if an antipsychotic medicine is right for your child.

Researchers funded by the Agency for Healthcare Research and Quality (AHRQ), a Federal Government research agency, reviewed 81 studies published between January 1987 and February 2011 on antipsychotic medicines in children and wrote a report of the results. The report was reviewed by clinicians, researchers, experts, and the public. You can read more information at:  http://1.usa.gov/NSh7LA



Children with Neurologic Disorders at Increased Risk For Death From Influenza

A disproportionately high number of children with neurologic disorders died from influenza-related complications during the 2009 H1N1 pandemic, according to a study by scientists with the Centers for Disease Control and Prevention. The report in the journal Pediatrics underscores the importance of influenza vaccination to protect children with neurologic disorders.  Of the 336 children (defined as people younger than 18 years) with information available on underlying medical conditions who were reported to have died from 2009 H1N1 flu-associated causes, 227 had one or more underlying health conditions. One hundred forty-six children (64 percent) had a neurologic disorder such as cerebral palsy, intellectual disability, or epilepsy. Of the children with neurologic disorders for whom information on vaccination status was available, only 21 (23 percent) had received the seasonal influenza vaccine and 2 (3 percent) were fully vaccinated for 2009 H1N1. “We’ve known for some time that certain neurologic conditions can put children at high risk for serious complications from influenza,” said Dr. Lyn Finelli, chief of the surveillance and outbreak response team in CDC’s Influenza Division. “However, the high percentage of pediatric deaths associated with neurologic disorders that occurred during the 2009 H1N1 pandemic was a somber reminder of the harm that flu can cause to children with neurologic and neurodevelopmental disorders.” For more information, go the the CDC website at:  http://www.cdc.gov/media/releases/2012/p0829_neurologic_flu.html


Teenagers with Autism Bullied at School

Almost half of all teenagers with an autism spectrum disorder are bullied at school, as compared to 11% for teens in the general population.  This was based on a recent survey of parents conducted at the University of California at Berkley.  Bullying has negative consequences on mental health and school performance, which causes additional struggles for teens with ASD.  For more information about this study, go to the website of the National Library of Medicine at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_128895.htmll



Do Job Program for People with Autism Work?

There seems to be a general consensus among autism researchers that, overall, programs to help people who have autism enter the job market have not been well studied, and that the rates of employment for people with autism are not looking too good.  Of interest is the fact that Walgreens is making an effort to hire and provide people with autism and other developmental disabilties jobs in their stores (no, we have no stock in Walgreens!).  For more information about the lack of research in this area, go to the website of the National Library of Medicine at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_128684.html


DON needed for 84-person ICF/DD

DON needed for 84-person ICF/DD with Rule 116 knowledge in Rockford, Illinois. Two years RN experience required. Approved RN Trainer or willingness to become approved to assist with compliance to Rule 116 as dictated by the Bureau of Quality Management.  Contact:

milestonehr@milestone-inc.org


Interested in a Joining a DDNA "Virtual Chapter"?

Are you a DDNA member who works in an area in which there are few other DD nurses nearby. . . and there is no local chapter conveniently located that allows you to meet with, support, and share information with other DD nurses?

If you are interested in getting connected with other nurses DD nurses, DDNA is offering you a new option to participate in a "virtual chapter." Using DDNA's "Go to Meeting" services, we can provide an online meeting space for you. You dial in by phone or access via your computer (it's really easy and we are glad to help you). The DDNA Board of Directors holds its monthly Board meetings using Go-to-Meeting, and we can vouch for the fact that it is a great way to communicate.

So, if you are a DDNA member interested in joining a virtual chapter, please email your name, city, and state to www.ddna.org. If there is sufficient interest, DDNA will help create this virtual chapter. If you have any questions, please feel free to call the DDNA office at 800-235-0882.



Persons with IDD More Like to Have Poor Dental Health

New research paints a grim picture of the oral health status of adults with intellectual and developmental disabilities. One-third have untreated cavities, 80 percent have gum disease and 10 percent are missing some teeth, the study found. These latest findings appear in the August issue of the Journal of the American Dental Association based on a study done by Dr. John Morgan, an associate professor in the department of public health and community service at Tufts University School of Dental Medicine in Boston.  For more info, click here to go the the website of the National Library of Medicine:  http://www.nlm.nih.gov/medlineplus/news/fullstory_128146.html


Fragile X and Down Syndromes Share Signaling Pathway for IDD

Intellectual disability due to Fragile X and Down syndromes involves similar molecular pathways report researchers in The EMBO Journal. The two disorders share disturbances in the molecular events that regulate the way nerve cells develop dendritic spines, the small extensions found on the surface of nerve cells that are crucial for communication in the brain. “We have shown for the first time that some of the proteins altered in Fragile X and Down syndromes are common molecular triggers of intellectual disability in both disorders,” said Kyung-Tai Min, one of the lead authors of the study and a professor at Indiana University and the Ulsan National Institute of Science and Technology in Korea. For more information, go to: http://bit.ly/ONbAed 


AADMD Offering Free Education in Developmental Disabilities

Our colleagues at the American Academy of Developmental Medicine and Dentistry are offering a free webinar series on Developmental Medicine.  The live online events will take place on Tuesday nights from 6:00 pm to 7:00 pm Eastern time.  The following sessions are available:

Aug. 7th: Communication (Patient, Parent/Caregiver and Inter-professional)  
Aug. 14th: Responsiveness, Respect, Self-Determination and Consent  
Aug. 21st: The Patient Support System
Aug. 28st: Assembling Accurate Clinical Information (Part 1)  
Sept. 4th: Assembling Accurate Clinical Information (Part 2)  
Sep. 11th: Optimizing Well-being  
Sep. 18th: Transitions from Pediatric to Adult Care  
Sep. 25th: Identifying Quality Resources and Improving Practice Quality  
Oct. 2nd: Behavior and Medication Management  
Oct. 9th: Healthcare Financing

Webinars will be archived for those unable to view them live.  If you receive a certificate of completion for a course, it may be used to meet the continuing education requirement for CDDN and DDC certification.  For more information about these courses, go to: http://aadmd.org/page/pedd-webinar-series 

 


Pets Help Children with ASD with Social Skills

Researchers in France evaluated the changes in prosocial behaviors of children with autism who have pets.  Alteration of social interactions especially prosocial behaviors – an important aspect of development – is one of the characteristics of autistic disorders. Numerous strategies or therapies are used to improve communication skills or at least to reduce social impairments. Animal-assisted therapies are used widely but their relevant benefits have never been scientifically evaluated. In the present study, we evaluated the association between the presence or the arrival of pets in families with an individual with autism and the changes in his or her prosocial behaviors. Of 260 individuals with autism - on the basis of presence or absence of pets - two groups of 12 individuals and two groups of 8 individuals were assigned to: study 1 (pet arrival after age of 5 versus no pet) and study 2 (pet versus no pet), respectively. Evaluation of social impairment was assessed at two time periods using the 36-items ADI-R algorithm and a parental questionnaire about their child-pet relationships. The results showed that 2 of the 36 items changed positively between the age of 4 to 5 (t0) and time of assessment (t1) in the pet arrival group (study 1): “offering to share” and “offering comfort”. Interestingly, these two items reflect prosocial behaviors. There seemed to be no significant changes in any item for the three other groups. The interactions between individuals with autism and their pets were more – qualitatively and quantitatively - reported in the situation of pet arrival than pet presence since birth. These findings open further lines of research on the impact of pet’s presence or arrival in families with an individual with autism. Given the potential ability of individuals with autism to develop prosocial behaviors, related studies are needed to better understand the mechanisms involved in the development of such child-pet relationship.   To read the complete research findings, go to:  http://www.plosone.org/article/info:doi/10.1371/journal.pone.0041739


Tips on Storing Medications

There are some excellent tips on storing medications that you can share with support staff and with individuals with IDD who take their own medications.  These tips are available from the National Institutes of Health at:   http://1.usa.gov/Mjxc23


Antidepressant Medication for Adults: Review of Research

Researchers funded by the Agency for Healthcare Research and Quality (AHRQ), a Federal Government research agency, reviewed 248 studies published between January 1980 and January 2011 on second-generation antidepressants. This report updates research first reported in 2007 and includes newer medicines. These medications are prescribed commonly for individuals with IDD.  You can read the report at www.effectivehealthcare.ahrq.gov/secondgenantidep.cfm. 


Remarks of Secretary Sebelius at Interagency Autism Coordinating Committee - July 10th

I’m very pleased to be here with you today.This is the first meeting of the Interagency Autism Coordinating Committee since it was renewed by the Combating Autism Reauthorization Act of 2011.  Today several members will be leaving the committee – some of whom have served since it convened in 2007. Those of you finishing your service today have overseen historic improvements in our nation’s approach to autism. Your advocacy and guidance has made it possible for researchers to open new doors to autism causes and interventions. And you’ve provided focus and attention on the needs of those living with autism and their families, creating new opportunities for them to reach their full potential.  I want to thank you for your service to our Department and commend you on your ongoing commitment to the autism community.

I also want to thank the committee’s returning members.  And I want to welcome several new members who will make a major impact on the work being done here. I want to specifically acknowledge the three new self-advocates, Noah Britton, Scott Michael Roberts and John Elder Robison who will offer a unique and critical perspective.

The new committee convenes at an important moment.

For many years, autism has been a challenge families dealt with on their own.  As recently as the 1990s, scientists thought autism was a rare disability that affected only 1 in every 2000 kids. Families and people living with autism often had nowhere to turn for answers or help.

Today we know that 1 in 88 children are living with autism. The need has never been greater for answers that will help individuals and families struggling with autism. President Obama recognized this when he named autism as one of his top three national health priorities in 2009.  And since then, the Administration and HHS has sustained that urgency and worked diligently to improve the lives of those living with autism.

A perfect example is the passage of the Affordable Care Act, one the most historic laws for Americans with disabilities that our country has ever seen.

We know that access to affordable, quality health care is critical for people with autism and their families.

Now, thanks to the law, insurers can no longer deny coverage to children with pre-existing conditions like autism and new plans must cover autism screening for children at no cost to parents.  The law will also ease the financial burden on treatment and care for people living with autism by allowing young adults to stay on their parent’s coverage until age 26 and putting an end to lifetime dollar limits on care.

And when it comes to autism specifically, we’re beginning to learn more about the causes. We ’re gaining a better understanding of how important interventions can be.  And nationally, we’ve seen recognition of the full impact of autism and what it means for our country.

You’ve played a huge part in all of that.

In 2009, you created an inspiring strategic plan to guide autism research, and identify the key questions and priorities we needed to focus on. By updating the plan every year you’ve ensured that it continues to reflect the latest science and remains a roadmap for autism research around the country.

But even with all of the progress we’ve made in the last few years, we have a long way to go.

First, we need more answers from research. For example, we continue to learn more about the needs of those with autism, but there are still populations, like non-verbal, school age children, and adults on the autism spectrum, who we don’t know enough about. And we need to do a better job of putting our resources where they can make the biggest difference.

Under the Obama Administration, we’ve made historic commitments to improve our knowledge of autism through research.  In 2009 and 2010, as part of the funding provided for NIH grants through the Recovery Act, we made the largest single new investment in autism research our country has ever seen, adding more than $122 million to ongoing federal funding at NIH and other federal agencies.

And today autism research supported by NIH and many advocacy organizations, is addressing nearly every major objective in your Strategic Plan.  Thanks to this work, we now have the foundation to make even more progress.

For example, Autism Centers of Excellence around the country are doing coordinated research on everything from causes of autism, to the most effective interventions, to possible medical treatments.  This year we announced funding for new centers to build on and expand that work.  And the National Database for Autism Research has pulled together results from federal and private research with data from over 30,000 subjects.

A second area, where we have to make a lot more progress is early detection of children showing signs of autism, and better access to interventions for those who are diagnosed. We know that whether it’s screening, diagnosis, interventions, or services, the earlier we take action, the better.  But too many children aren’t getting diagnosed until they get to school, despite medical guidelines that recommend screening start at 18 months. And even then, a diagnosis doesn’t always mean services will start right away. We need to change that.

This Administration has led the way in supporting research on innovative interventions that can help children with autism thrive. And we’ve also taken strides to close the gaps in autism services, particularly for minority communities.

For example, we know that many of the adults who spend the most time with our children – like teachers, nurses, and social workers -- don’t necessarily have the knowledge or training to recognize the signs of autism. Our Health Resources and Services Administration is working with universities and health training institutions to create interdisciplinary curriculum with an emphasis on learning the signs and providing the best services to a child who needs help.

We’ve also focused on creating culturally sensitive interventions for Hispanic and African-American children.  This work recognizes that the way children display autism, and the best ways to help them, may differ between ethnicities. So we’ve put researchers in school districts like one in Los Angeles to work with minority children and learn what works. And we continue to support the CDC Learn the Signs, Act Early campaign to get families, health care providers and communities the information and resources they need on autism.

And, finally, we need to create better services and supports for older Americans living with autism.

The growing prevalence of autism in our country doesn’t just mean more services for children and youth in school, but, increasingly, more services for adults in the community.

We know that living with autism can have big challenges.  We also know that people with autism often possess amazing skills and can make amazing contributions to our communities. Our mission is to create opportunities that ensure people with autism, at all points of the spectrum, can thrive and participate in all aspects of our society.

To this end, we’ve invested over $3 million to develop a National Autism Resource and Information Center, called Autism NOW.  The center will use a national network, regional events, along with training assistance to offer people and families living with autism quality information about services and interventions in their own communities.

Our vision is of a nation where  every person with disabilities has the chance to live in their community and be treated with the dignity and respect they deserve. This is the right thing to do for all Americans.  And it makes us a stronger country.

This is the vision that led our department to create the Administration for Community Living, bringing together our experts serving people with disabilities as well as seniors. The ACL is working to maximize the independence, well-being, and health of all people with disabilities, including people with autism, to make sure all Americans with disabilities have the opportunity to live a fulfilling, self-determined life in our communities.

For some that might mean help with affordable and appropriate housing.  For others it might mean transition support as a young person moves from high school to adult life, including employment. For many families, it might mean finding support services and care.

And for all of these needs, ACL will be there to help.

If we are going to succeed in understanding and meeting the needs of people with autism, we need to do better in all of these areas. We need to continue to make progress. Not just for the sake of those living with autism and their families, but for our country.  We cannot afford to leave people with autism on the sidelines.  We must make every effort to help them live up to their highest potential and make a meaningful contribution to their communities and country.

Thanks in part to this committee’s ability to focus and coordinate autism research and services, we’ve made significant progress.  And we can’t stop now. I know that each of you share that passion, and I look forward to working with you to continue improving the lives of people with autism together.

Thank you.

Note: If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit at http://www.whitehouse.gov/disability-issues-contact and fill out the "contact us" form in the disabilities section, or you can email us at disability@who.eop.gov and provide your full name, city, state, and organization 


White House Observes ADA Anniversary

On Thursday, July 26, at 8:00 a.m. Eastern, please tune in as the White House observes the 22nd anniversary of the Americans with Disabilities Act and hosts a discussion on the state of disability policy.  You can tune into the live stream which will have live captioning at http://www.whitehouse.gov/live
 
You will have the opportunity to hear from Senior Advisor to President Obama, Valerie Jarrett, as well as other senior administration officials.  We also will have a panel discussion with administration officials who will discuss technology, education, community living, civil rights, employment and emergency preparedness—among other topics. 

Thank you, and we look forward to observing the anniversary of this landmark civil rights law with you.

  • What: White House Observance of ADA Anniversary
  • When: Thursday, July 26, 2012
  • Time: 8:00-9:00 a.m. Eastern
  • How: Live stream at http://www.whitehouse.gov/live

This event is closed press.

Note: If you received this email as a forward but would like to be added to the White House Disability Group email distribution list, please visit at http://www.whitehouse.gov/disability-issues-contact and fill out the "contact us" form in the disabilities section, or you can email us at disability@who.eop.gov and provide your full name, city, state, and organization.

 


Cognitive Change May Be Only Sign of Fetal Alcohol Exposure

Most children exposed to high levels of alcohol in the womb do not develop the distinct facial features seen in fetal alcohol syndrome, but instead show signs of abnormal intellectual or behavioral development, according to a study by researchers at the National Institutes of Health and researchers in Chile.

These abnormalities of the nervous system involved language delays, hyperactivity, attention deficits or intellectual delays. The researchers used the term s functional neurologic impairment to describe these abnormalities. The study authors documented an abnormality in one of these areas in about 44 percent of children whose mothers drank four or more drinks per day during pregnancy. In contrast, abnormal facial features were present in about 17 percent of alcohol exposed children. For more information, go to:  http://www.nih.gov/news/health/jul2012/nichd-23.htm


Social Brain Circuits Disrupted in Autism

In a study of high-functioning adolescents with an autism spectrum disorder, scientists using functional brain imaging have found reduced connectivity selectively affecting parts of the brain that form circuits supporting social behavior. Stephen Gotts, Alex Martin and colleagues at the National Institute of Mental Health developed an approach to identify regions throughout the entire brain for which connectivity was reduced in ASD, and measure the magnitude of the reductions.  The findings sharpen the focus of previous reports suggesting disruptions in connectivity across the brain in autism, and offer a target for future studies to search for the genes that shape the development of these circuits and how they become disrupted in the disorder.   For more information, go to the website of the National Institutes of Mental Health at: http://1.usa.gov/SQqfEw


DDNA Back from Vacation

DDNA's office was closed for two weeks for our staff to take some very needed vacation.  During this time, our email InBox received more than 500 messages.  Many phone messages were also left on our answering machine (some a bit garbled).  We are working full speed to respond to everyone who wrote or called requesting information or assistance.  If you need help or have a question, we are in the office 9-5 ET Monday-Friday. 


Happy Fourth of July and Summer Vacation for DDNA!

Happy Fourth of July from DDNA!  It's that time of year when hard workers everywhere dream of vacation.  DDNA is taking a very needed vacation -- it's been two years since our last vacation!  The office will be closed from July 5th through July 8th for a DDNA Board meeting.  And then both Mary Alice Willis and Mary Maubach will be out of the office until July 22nd.  Andrew Corbin will be answering the phones remotely and helping members to the best of his ability.  He will be able to reach me by phone if there is a true DDNA "emergency," . . but I don't anticipate that there will be many DDNA phone emergencies that cannot wait until we return.  Plus, it might require a long distance phone call to Iceland, because we are trying to find a vacation spot cooler than 100 degrees!  All you nurses stay cool!  Ice cubes all around!


Children with Autism Show EEG Differences

A study conducted at Harvard University Medical School looked at the synchronization of brain activity across different brain regions, as measured by EEG. in children with and without autism. Sensors were use to record electrical brain activity across many different regions on the scalp.  This allowed research to look at the extent to which brain activity from one region was synchronized with brain activity from another region, a phenomenon known as "EEG coherence."  When brain areas are synchronized, it means that they connected and communication with each other. 

Researchers Dr. Frank Duffy and Dr. Heidelise Als compared the EEGs of nearly 1,000 children with and without autism. They found differences in terms of brain connectivity between the two groups.  Children with autism had a reduced short range connectivity, indicating poor function of local brain networks, especially in the left hemisphere brain brain responsible for language.  The also had increased connectivity between brain regions that were farther apart, which might be a mechanism developed to compensate for reduced short range connectivity, the researchers said. 

To read more about this study, go to:  http://www.biomedcentral.com/1741-7015/10/64/abstract  


What's Up With Medicaid in Your State?

The National Association of States United for Aging and Disabilities publishes a State Medicaid Integration Tracker each month.  The Tracker focuses primarily on state actions in managed care for people who receive Medicaid-funded LTSS and on state initiatives relating to services and costs of services for people who are dually eligible for Medicaid and Medicare. To see what is happening with Medicaid funding for people with IDD in your state, go to: http://www.nasuad.org/medicaid_reform_tracker1.html#MN


Protect Your Clients During the Heat Wave

Many parts of the US are now experiencing extremely high temperatures.  And people with IDD in areas of the country that usually do not get this type of weather may not have access to air conditioned living/working.  Becoming overheated can be dangerous and heat stroke can be deadly.  For tips from the American Red Cross on how to stay safe during the heat, and how to manage heat cramps, heat exhaustion, and heat stroke, go to:  http://rdcrss.org/Lwk4VS


Fragile X Gene’s Prevalence Suggests Broader Health Risk

The first U.S. population prevalence study of mutations in the gene that causes fragile X syndrome, the most common inherited form of intellectual disability, suggests the mutation in the gene — and its associated health risks — may be more common than previously believed.  Writing this month (June 2012) in the American Journal of Medical Genetics, a team of Wisconsin researchers reports that the cascade of genetic amino acid repeats, which accumulate over generations and culminate in the mutation of a single gene causing fragile X, is occurring with more frequency among Americans than previously believed. To read more about this from the Waisman Center, which conducted the research, go to:  http://www.news.wisc.edu/20785


Prevention of Falls in Community-Dwelling Older Adults

Falls are the leading cause of injury in adults aged 65 years or older. Between 30% and 40% of community-dwelling adults aged 65 years or older fall at least once per year.  A report by the US Preventive Services Task Force (USPSTF)published online in the May 28, 2012 Annals of Internal Medicine updates the previous 1997 USPSTF study and reviewd new evidence on the effectiveness and harms of primary care–relevant interventions to prevent falls in community-dwelling older adults. The interventions were grouped into 5 main categories: multifactorial clinical assessment (with or without direct intervention), clinical management (with or without screening), clinical education or behavioral counseling, home hazard modification, and exercise or physical therapy. The USPSTF recommends exercise or physical therapy and vitamin D supplementation to prevent falls in community-dwelling adults aged 65 years or older who are at increased risk for falls. 

For more information, go to the Annals of Internal Medicine at:   http://www.annals.org/content/early/2012/05/23/0003-4819-157-3-201208070-00462.full


Get Published! Contribute to the June DDNA Newsletter!

DDNA is getting ready to put together its June newsletter. We are looking for members who want to share information, opinions, news item, photos, clinical tips and tricks, an opinion piece, a success story, a book review, a cautionary tale, a poem, something written by a person with IDD who would like to see his or her work published, or anything else you think might be of interest to other DDNA members.  It does not have to be long or have any fancy footnotes. Just write from your knowlege and your heart.  It can be something that you have already written that has not been published elsewhere, e.g., a paper about an IDD topic for school or work. Deadline for submission is June 15th . If you have not read previous issues of our newsletter, they can be found on the website at: http://ddna.org/pages/newsletter

Please note that you must be logged into the DDNA website with your username and password to read the newsletters.

So please sit down at your keyboard, and take a few minutes to share information of interest with your fellow DDNA members . . . it never hurts to have a published article on your professional resume! It doesn't have to be perfect, we will copy edit and return it to you for your approval before publication.  You can email your newsletter contribution to: admin@ddna.org

Remember that DDNA's mission is to advocate, educate, and care for IDD nurses.  Contributing your writing to the newsletter is a great way for you as a member to actively participate in helping to fulfill this mission!  

Mary Alice Willis
Executive Director, DDNA


UK's Learning Disability Journal Publishes Article About DDNA Education Conference

DDNA members who attended the 20th Education Conference in Orlando last month were introduced to Colin Parish, who is Editor of “Learning Disability Practice,” a journal published in the United Kingdom. Colin flew over from the UK to attend our conference and see what IDD nursing is like in the United States. He has written about his experience at the conference in the most recent issue of the journal and is offering DDNA members the opportunity this month to access this issue. To read the free article follow these directions:

  • STEP1 – Visit www.rcnpublishing.co.uk and click on the Learning Disability Practice journal cover.
  • STEP2 – Click on the 'register' button in top left hand corner of the journals website. Then click Register again – DO NOT CLICK ‘subscribe’.
  • STEP3 – You will see the personal details page for Nursing Standard: just fill in your details and click 'next'.
  • STEP3 – Enter your details including your subscriber number - 2096382 - when prompted.
  • If you would like to consider subscribing to this journal at a special DDNA member discount that is available until September, go to the following link:http://ddna.org/downloads/0238_DDNA_Conference flyer (2).pdf


Autism Often Not Diagnosed Until Age 5 or Older

Even though autism symptoms typically emerge before age 3, most children with autism are diagnosed when they're 5 or older, a new snapshot of autism in America shows. More than half of U.S. children with an autism spectrum disorder are taking at least one psychotropic medicine -- including stimulants, anti-anxiety medications, antidepressants, sleep aids, seizure medications or antipsychotics -- even though there are no drugs that have clearly been shown to impact the core symptoms of the disorder. The findings are from a nationally representative survey of more than 4,000 parents or guardians of children with special needs aged 6 to 17, including about 1,400 who had an autism spectrum disorder. The report was compiled by researchers from the U.S National Institute of Mental Health in conjunction with the U.S. Centers for Disease Control and Prevention.
For more information from this study done by the NIMH, go to the website of the National Institutes of Health at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_125545.html


Computer Technology Helps People to Select Wheelchairs

A Wayne State University researcher has introduced computer technology that makes it easier for people who need wheelchairs to select one that best suits their needs.In a study supported by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education, Kim's team reviewed current research in telerehabilitation, an emerging field that aims to deliver rehabilitation services over telecommunication networks and the Internet, and complements in-person clinical assessment and therapy in underserved areas. His system improves the selection and evaluation processes by enabling remote assessment of appropriate wheelchair alternatives with advanced queries and selection criteria. It also provides a reusable information repository and enables systematic evaluation. To read more about this research, go to the website of Wayne State University's Division of Research at:  http://research.wayne.edu/news.php?id=9001


Fever During Pregnancy More Than Doubles the Risk of Autism or Developmental Delay

A team of UC Davis researchers has found that mothers who had fevers during their pregnancies were more than twice as likely to have a child with autism or developmental delay than were mothers of typically developing children, and that taking medication to treat fever countered its effect.
"Our study provides strong evidence that controlling fevers while pregnant may be effective in modifying the risk of having a child with autism or developmental delay," said Ousseny Zerbo, lead author of the study. "We recommend that pregnant women who develop fever take anti-pyretic medications and seek medical attention if their fever persists."
Published online in the Journal of Autism and Developmental Disorders, the study is believed to be the first to consider how fever from any cause, including the flu, and its treatment during pregnancy could affect the likelihood of having a child with autism or developmental delay.

The study, "Is maternal influenza or fever during pregnancy associated with autism or developmental delays? Results from the CHARGE (Childhood Autism Risks from Genetics and Environment) Study," was funded by the National Institute of Environmental Health Sciences (grants R01-ES015359 and P01-ES11269), the U.S. Environmental Protection Agency's STAR program (grants R-829388 and R-833292) and the UC Davis MIND Institute. It is available for purchase at: www.springerlink.com/content/x7602q07w228t313/?MUD=MP.


Many Babies with Developmental Delays Go Untreated

About one out of every three infants who scores well below average on a test of developmental skills -- and is therefore considered at a high risk of having delays -- does not get referred to early intervention services, according to a new study conducted at Stanford University School of Medicine.  For more information about this study, go the the website of the National Institutes of Health at: http://www.nlm.nih.gov/medlineplus/news/fullstory_125476.html


A Sad Good-bye to Katie Beckett

At our 2010 conference in Reno, we were honored to be addressed by Katie Beckett. Katie suffered encephalitis as an infant and required mechanical ventilation.  Her parents' insurance ran out, so her case went to Medicaid.  At that time Medicaid required Katie to remain in the hospital for care, rather than go home with services. US Representative Tom Tauke from Iowa brought Katie's story to the attention of President Ronald Reagan, who took up the cause. The case led to the development of the “Katie Beckett waiver,” under which Medicaid pays for home care for disabled children. Katie eventually graduated from college. Very sadly, Katie has just passed away at the age of 34. Here is a link to more information: http://www.washingtonpost.com/local/obituaries/katie-beckett-whose-case-led-to-disabled-children-being-allowed-to-live-at-home-dies-in-iowa/2012/05/21/gIQA90gMgU_story.html
Her funeral will be held this Friday.  Our thoughts and prayers are with her family.


CDC Lowers Lead-Poisoning Threshold for Kids

U.S. health officials on Wednesday lowered the threshold for what's considered lead poisoning in young children. The change by the U.S. Centers for Disease Control and Prevention reduces the definition of lead poisoning from 10 micrograms of lead per deciliter of blood to 5 micrograms. That means many more children under 5 years of age could be diagnosed with too much lead in their blood, a condition that's been linked to developmental problems and even a lower IQ.  Lead, a metal once common in gasoline and house paint, can permanently damage developing brains. For more information, go to the website of the National Institutes of Health at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_125245.html


New Study Shows Simple Task at Six Months of Age May Predict Risk of Autism

A new prospective study of six-month-old infants at high genetic risk for autism identified weak head and neck control as a red flag for autism spectrum disorder and language and/or social developmental delays. Researchers at the Kennedy Krieger Institute concluded that a simple "pull-to-sit" task could be added to existing developmental screenings at pediatric well visits to improve early detection of developmental delays. For more information, go to:
http://www.kennedykrieger.org/overview/news/new-study-shows-simple-task-six-months-age-may-predict-risk-autism


Lipid Profiles in Children with Down Syndrome

A study done at the Children's Hospital of Philadelphia compared lipid profiles among children with DS and their siblings highlighting the presence of a less favorable lipid profile in this high-risk population.  They found that children with DS have less favorable lipid profiles than their siblings independent of weight status. These findings may have important implications for the screening and treatment of this large population at increased risk for ischemic heart disease. For more information, go to: http://pediatrics.aappublications.org/content/early/2012/05/09/peds.2011-1262.full.pdf+html


Employment Prospects Dim for Young Adults With Autism

Young adults with an autism spectrum disorder are less likely to continue their education or get a job after high school when compared to young adults with other disabilities, new research indicates. "Many families with children with autism describe leaving high school as falling off a cliff because of the lack of services for adults with an autism spectrum disorder," said senior study author Paul Shattuck, an assistant professor of social work at Washington University in St. Louis. "So much of media attention focuses on children. It's important for people to realize autism does not disappear in adolescence. The majority of lifespan is spent in adulthood." To access this article, go to:  http://pediatrics.aappublications.org/content/early/2012/05/09/peds.2011-2864.full.pdf+html


DDNA's 20th Annual Education Conference: Thanks to All Who Made it So Special!

DDNA's 20th Anniversary Education Conference in Orlando last week was truly special!  It takes dedication to DDNA and the hard work of many individuals to make a conference successful . . . and according to the evaluations we have received, almost everyone thoroughly enjoyed the conference, felt that they learned more about DD nursing, and also made valuable connections with other DD nurses from around the country. We would like to give special thanks to our speakers, sponsors, exhibitors, attendees, the Board of Directors, and everyone who contributed their time and effort . . .  because a conference is a coming together for the purpose of sharing, learning, and connecting.  We are already looking forward to our conference next year in Philadelphia, April 25th-29th and hope to see you there!


Agent Reduces Autism-Like Behaviors in Mice

National Institutes of Health researchers have reversed behaviors in mice resembling two of the three core symptoms of autism spectrum disorders. An experimental compound, called GRN-529, increased social interactions and lessened repetitive self-grooming behavior in a strain of mice that normally display such autism-like behaviors, the researchers say.GRN-529 is a member of a class of agents that inhibit activity of a subtype of receptor protein on brain cells for the chemical messenger glutamate, which are being tested in patients with an autism-related syndrome. Although mouse brain findings often don't translate to humans, the fact that these compounds are already in clinical trials for an overlapping condition strengthens the case for relevance, according to the researchers. 

"Our findings suggest a strategy for developing a single treatment that could target multiple diagnostic symptoms," explained Jacqueline Crawley, Ph.D., of the NIH’s National Institute of Mental Health (NIMH). "Many cases of autism are caused by mutations in genes that control an ongoing process — the formation and maturation of synapses, the connections between neurons. If defects in these connections are not hard-wired, the core symptoms of autism may be treatable with medications."  For more information go to the NIH website at:  
http://www.nih.gov/news/health/apr2012/nimh-25.htm


Gene Discovered for a New Form of Developmental Disability

Researchers at the Centre for Addiction and Mental Health (CAMH) in Toronto led a study discovering a gene for a new form of intellectual disability, as well as how it likely affects cognitive development by disrupting neuron functioning.  CAMH Senior Scientist Dr. John Vincent and his team found a mutation in the gene NSUN2 among three sisters with intellectual disability, a finding to be published in the May issue of the American Journal of Human Genetics.The discovery was made after mapping genes in a Pakistani family, in which three of seven siblings had intellectual disability as well as muscle weakness and walking difficulties, says Dr. Vincent, who heads the Molecular Neuropsychiatry and Development Laboratory in the Campbell Family Mental Health Research Institute at CAMH. For more information, go to: http://www.sciencedirect.com/science/article/pii/S0002929712002030


Interactions of People with Disabilities and Nursing Staff During Hospitalization

The April 2012 issue of the American Journal of Nursing contains the results of a descriptive qualitative study that found that people with disabilities often feel unsafe and poorly communicated with in hospitals.  There were 35 people included in the study.  Five of these people had mild to moderate cognitive or intellectual disabilities. The study used focus groups --semistructured interviews with a convenience sample of five people with developmental disabilities.  Participants were asked about their experiences with nursing staff during hospitalization and the sessions were taped and then transcribed. Four themes emerged from the overall group of study participants:  poor communication on the part of the nursing staff, compromised care or lack of competence in providers, negative attitudes on the part of the nursing staff, and participants' fears related to quality of care.  The five people who had mild-to-moderate cognitive disabilities "did not fare well in the focus groups," but the findings of the study were that people with cognitive disabilities can provide some data about their hospital experiences.  To read this very interesting study, go to: 
http://journals.lww.com/ajnonline/Fulltext/2012/04000/Original_Research___Interactions_of_People_with.22.aspx


Conference Registration Deadline Fast Approaching

The DDNA 20th Annual Education Conference starts next week . . . can you believe it?  How time flies!  If you have not yet registered and are planning to attend, this is the time to get your registration in.  If you have any questions about the conference, please feel free to call DDNA at 800-888-6733 during business hours ET.  We have a great educational conference planned and some other fun activities, so we look forward to seeing you all next week!


Nanomaterials Offer Hope for Cerebral Palsy.

By tacking drugs onto molecules targeting rogue brain cells, researchers have alleviated symptoms in newborn rabbits that are similar to those of cerebral palsy in children. Cerebral palsy refers to a group of incurable disorders characterized by impairments in movement, posture and sensory abilities.  Read more about this study at http://www.nature.com/news/nanomaterials-offer-hope-for-cerebral-palsy-1.10475


Christianson Syndrome: An Uncommon Developmental Disability

Christianson syndrome is a disorder that primarily affects the nervous system. This condition becomes apparent in infancy. Its characteristic features include delayed development, intellectual disability, an inability to speak, problems with balance and coordination (ataxia), and difficulty standing or walking. Individuals who do learn to walk lose the ability in childhood. Most affected children also have recurrent seizures (epilepsy), beginning between ages 1 and 2. Other features seen in many people with Christianson syndrome include a small head size (microcephaly); a long, narrow face with prominent nose, jaw, and ears; an open mouth and uncontrolled drooling; and abnormal eye movements. Affected children often have a happy demeanor with frequent smiling and spontaneous laughter. Christianson syndrome is a rare condition, although the exact prevalence is unknown. The condition was first described in a South African family and has since been found people in other parts of the world.  For more information, go the the website of the National Institute of Health at:http://ghr.nlm.nih.gov/condition/christianson-syndrome


Web-Based Tools Produce Fast, Accurate Autism Diagnosis

Researchers at Harvard Medical School have significantly reduced from hours to minutes the time it takes to accurately detect autism in young children.The process of diagnosing autism is complex, subjective, and often limited to only a segment of the population in need. With the recent rise in incidence to 1 in 88 children, the need for accurate and widely deployable methods for screening and diagnosis is substantial. Dennis Wall, associate professor of pathology and director of computational biology initiative at the Center for Biomedical Informatics at Harvard Medical School, has been working to address this problem and has discovered a highly accurate strategy that could significantly reduce the complexity and time of the diagnostic process. Wall has been developing algorithms and associated deployment mechanisms to detect autism rapidly and with high accuracy. The algorithms are designed to work within a mobile architecture, combining a small set of questions and a short home video of the subject, to enable rapid online assessments. This procedure could reduce the time for autism diagnosis by nearly 95 percent, from hours to minutes, and could be easily integrated into routine child screening practices to enable a dramatic increase in reach to the population at risk."We believe this approach will make it possible for more children to be accurately diagnosed during the early critical period when behavioral therapies are most effective," said Wall.  The article describing this study can be located in the journal "Translational Psychiatry" at:  http://www.nature.com/tp/journal/v2/n4/full/tp201210a.html


Higher Autism Risk for Children of Obese Mothers

Children born to obese or very overweight mothers are at higher risk of having autism or developmental delays, new research suggests. The study of more than 1,000 children found that the offspring of obese mothers had a 67 percent higher risk of autism than the children of normal-weight moms, and more than double the risk of having developmental delays, such as language impairment.  "The odds of autism and other developmental delays were significantly higher in the children of moms who were obese versus those who weren't," said lead study author Paula Krakowiak, a biostatistician and doctoral candidate at the University of California, Davis. The research included more than 500 children aged 2 to 5 with mild to severe autism, about 170 children with another type of developmental disability, and 315 typically developing children, all taking part in the Childhood Autism Risks from Genetics and the Environment, conducted between 2003 and 2010.  Children were assessed by experts from the university's MIND Institute to confirm their autism diagnosis, while mothers were interviewed about various aspects of their health before and during pregnancy. Information about weight came from either medical records or mothers' recollections of their weight before and during pregnancy. For more information go to this web page from the National Institutes of Health:  http://www.nlm.nih.gov/medlineplus/news/fullstory_123869.html


Counting Down the Days to the 2012 Conference!

The conference is coming together in many exciting ways!  Do not miss our opening on Saturday morning.  The Board of Directors will be making a "themed" entrance . . . it involves costumes, candy, and cars . . .  and that's all we're saying!  The Citrus Council Girl Scouts will be providing our color guard (and we are inviting them to stay for our first session -- who knows . . .  one of them could be inspired to pursue a career in DD nursing).  Accompanying the color guard with be Gina Marie Incandela singing the Star Spangled Banner.  Gina Maria was diagnosed with PDD-NOS, but that has definitely not kept her from sharing her amazing gift of voice.  If you would like to see a video of her singing at the opening of an Orlando Magic Basketball Game, go to: http://www.youtube.com/watch?v=wfUV57PT7-E&feature=relmfu
Our opening will also include a photo retrospective of DDNA over the years, and a special presentation from Randy Bryson, DDNA's founding Executive Director.  Randy and I knew each other well for many years before he left DDNA. I will be forever grateful that he encouraged me to offer my services as the new Executive Director. I was honored to be selected, and it continues to be my honor and privilege to serve the members of DDNA -- the most amazing nurses, who in the face of continuing cutbacks, increasingly time-consuming paperwork, and a daily uphill battle work to ensure that the health needs of individuals with IDD are met (because without health, nothing else really matters). Can't wait to see you all at the conference in my home city -- Orlando!!  Mary Alice Willis, Executive Director


Spontaneous Gene Glitches Linked to Autism Risk with Older Dads

Researchers have turned up a new clue to the workings of a possible environmental factor in autism spectrum disorders (ASDs): fathers were four times more likely than mothers to transmit tiny spontaneous mutations to their children with the disorders. Moreover, the number of such transmitted genetic glitches increased with paternal age. The discovery may help to explain earlier evidence linking autism risk to older fathers.

The results are among several from a trio of new studies, supported in part by the National Institutes of Health, finding that such sequence changes in parts of genes that code for proteins play a significant role in ASDs. One of the studies determined that having such glitches boosts a child’s risk of developing autism five to 20 fold.  For more information about this study, go to: http://www.nih.gov/news/health/apr2012/nimh-04.htm


Conference Manual Available for Purchase on Lulu

For those members who prefer to carry around the big heavy conference manual, it is now available for purchase on Lulu at: www.lulu.com/shop/ddna/2012-conference-manual/paperback/product-20040129.html
The conference slides will also be available free on a flash drive or CD for you at the registration desk when you arrive at the conference.  Please remember to indicate your preference when you register for the conference


New DDNA Forum for Texas Nurses

There has been quite a bit of challenging new legislation for IDD nurses in the state of Texas.  DDNA has heard from a number of members who say that they are feeling overwhelmed and confused.  For you RNs and LVNs who are in Texas, we have started a new forum called "The Great State of Texas" on the forum page of the website.  It is being moderated by Diane Moore, DDNA's immediate past President.  She currently serves on the Texas Nursing Advisory Committee, which was convened to address these legislative and practice changes. The committee is comprised of provider association representatives, advocacy representatives, and the Texas Department of Aging and Disabilities Services (DADS) and Board of Nursing (BON) agency staff.  Diane looks forward to discussing the issues you all are facing in Texas as you work through these challenges together!  Scroll down the forum page of the DDNA website at: http://ddna.org/forums.php to find Diane's posts and if you have concerns or questions about IDD nursing practice in Texas, please feel free to ask questions, comment, or respond.


Autism Prevalence: More Affected or More Detected?

Earlier today, the CDC released new numbers from their ongoing surveillance of autism prevalence, the Autism and Developmental Disability Monitory (ADDM) Network. What was once considered a rare disorder is now reported as affecting 1 in 88 children, 1 in 54 boys. These new numbers, up 78 percent from 2002 and 23 percent from 2006, raise immediate questions. Are more children affected or more detected? Does the increase reflect a growing problem, or do these new numbers reflect an improvement in our ability to diagnose and serve those affected? The National Institute of Mental Health's Director's blog ends with: "Our working assumption is that there are both more children affected and more detected."  To read more from NIMH, go to:  http://tinyurl.com/7d25p7f


Children with Autism Bullied 3X More Than Their Unaffected Siblings

Today, the Interactive Autism Network, www.ianproject.org, the nation's largest online autism research initiative and a project of the Kennedy Krieger Institute, reported preliminary results of the first national survey to examine the impact of bullying on children with autism spectrum disorders. The results show that 63 percent of children with ASD have been bullied at some point in their lives.  To read more about the findings of this study, go to the website of the Kennedy Krieger Institute at:  http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_bullying


DNA, RNA Abnormalities May Explain Brain Overgrowth in Autism

Researchers report that they have identified abnormalities in the DNA and RNA of cells in the prefrontal cortex of the brains of autistic children. The findings may help to explain the underlying mechanism for the brain "overgrowth" that prior reports have documented in autistic children. Those studies have found that the brains of young children with autism are larger than the brains of non-autistic children, particularly in the prefrontal cortex. The prefrontal cortex is key to complex thoughts and behaviors, including language, social behavior and decision-making.  For more information from the National Institutes of Health, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_123300.html


New Research on the Genetics of Williams Syndrome

A personality profile marked by overly gregarious yet anxious behavior is rooted in abnormal development of a circuit hub buried deep in the front center of the brain, say scientists at the National Institutes of Health. They used three different types of brain imaging to pinpoint the suspect brain area in people with Williams syndrome, a rare genetic disorder characterized by these behaviors. Matching the scans to scores on a personality rating scale revealed that the more an individual with Williams syndrome showed these personality/temperament traits, the more abnormalities there were in the brain structure, called the insula.

“Scans of the brain’s tissue composition, wiring, and activity produced converging evidence of genetically-caused abnormalities in the structure and function of the front part of the insula and in its connectivity to other brain areas in the circuit,” explained Karen Berman, M.D., of the NIH’s National Institute of Mental Health (NIMH).  For more information, go the the NIMH website at:  http://1.usa.gov/GD1bKK



New DDNA Forum on Down Syndrome

DDNA has a new forum on Down Syndrome, which is being moderated by Jennifer Roman.  Jennifer started out as a certified special education teacher, and soon discovered that she more interested in the developmental and physiological needs of the children that she taught.  So she got her BSN!  Take a minute to check out the new DDNA Syndrome Forum.  It includes a beautiful and inspiring video about a very loving mother and her beautiful child.  Click here to go to the forum page of the DDNA website:  http://ddna.org/forums.php   Then scroll down to the forum on Down Syndrome.

Thanks so much to Jennifer Roman for volunteering to moderate this forum!   If any other members are interested in moderating a forum, please contact DDNA and we will get you set up to do so.  And we invite all members to visit the forums to ask and respond to questions and discuss topics of interest.


Happy Certified Nurses Day!

We wish all of our CDDNs and DDCs a very Happy Certified Nurses Day!  You worked hard, studied hard, passed a difficult certification examination, and continually maintain your practice and education in the specialty of IDD nursing.  It matters to the individuals for whom you provide care and service that you successfuly put all that effort into becoming the best IDD nurse you could be.  We recognize you for it and we are proud to have you as members of DDNA!


Deadline for Application to Sit For Certification Exam at Annual Conference

If you are planning to sit for either the RN CDDN or LVN/LPN DDC certification exam at the 20th Annual Education Conference in Orlando in May, you must have your completed application in to DDNA by no later than midnight on April 20th.  This gives us the time necessary to review and process your application. Information about certification in the specialty of IDD nursing and access to the required certification application documents can be found at:  http://ddna.org/pages/certification

Please note:  You must have your application completed and received by DDNA by May 20th.  Please do not plan to arrive at the conference without all the required completed paperwork approved and request to take the exam. It will not be permitted.

If you have any questions about certification, please call DDNA at 800-888-6733 during business hours Monday-Friday ET and we will be glad to answer them.


Keeping Individuals with I/DD Safe Online

The federal government has created a free website about being safe online. If any individuals for whom you provide care and services are starting to use the internet, this website includes information that you might want to share with them to help protect them against online scams, online bullying, and other bad things that can happen online if you are not careful. Since many I/DD nurses may spend a good part of their day "nursing" from a computer, you may also find this information helpful as well.

Here is the link:

http://onguardonline.gov/


End-of-Life Issues for Persons Without Family Members

DDNA received a request for help from our members on the following issue:  How are end-of-life issues handled when an individual with IDD is terminally ill, but does not have a family member (either due to abandonment or death of the family member)?  The main concern is that in some cases futile and painful health care interventions are continued.  The full question has been posted in the forum on Aging and IDD.  If you have knowledge and experience in this area, it would be much appreciated if you would go to the DDNA Forum page, click on End of Life Issues, and share.  Thank you!


Study Defines Rx Window for HIV+ Children Infected at Birth

HIV-positive children older than 1 year who were treated after showing moderate HIV-related symptoms did not experience greater cognitive or behavior problems compared to peers treated when signs of their infection were still mild, according to a study funded by the National Institutes of Health. But both groups of HIV-positive children lagged behind HIV-negative children in these areas, suggesting that the first year of life may present a critical treatment window for minimizing impairments in brain development due to HIV.  For more information about this study, go to: http://www.nimh.nih.gov/science-news/2012/nih-funded-study-defines-treatment-window-for-hiv-positive-children-infected-at-birth.shtml?utm_source=govdelivery&utm_medium=email&utm_campaign=govdelivery


March is Developmental Disabilities Awareness Month

Developmental Disabilities Awareness Month was established by Ronald Reagan in 1987.  Its purpose is to raise awareness of social, legal, and techological changes (and may we take the liberty of suggesting this includes raising awareness of health care needs) for people with developmental disabilities.  We know our members have devoted their careers to raising awareness of the needs of people for whom they provide care.  DDNA thanks you for your service - we are aware of all that you do and of the many times you have gone above and beyond to assure the best for people with DD.


Watch a Video on Importance of Autism Research

Watch a video from the National Institute of Metnal Health in which researchers, advocates, and parents of children with autism talk about the importance of taking part in autism research and contributing to the National Database for Autism Research, which was selected as one of HHS Secretary Sebelius’ Top 3 Picks for the 2011 HHSinnovates Awards.  To view this video, go to:  http://www.youtube.com/watch?v=Tb6euCVoous


End the Use of the R-Word

It is impossible to believe that any member of DDNA would ever use the words "retard(ed)" to describe a person with an intellectual/developmental disability, but there are still people out there who do not realize that this word can be hurtful, offensive, and degrading.  Working in the nursing specialty of IDD, we have the opportunity to see and hear how the people for whom we provide care and services are treated, discussed, and spoken to in various settings, including healthcare settings.  The therapeutic communication skills taught in nursing education programs give us a unique ability to assess and intervene appropriately in situations in which damaging language is being used.  We know how to to use our calm presence to protect individuals in the moment and to recognize a teachable moment for the offender.  March 7th is annual "End the Use of the R-Word" day.  Help to spread the word about the importance of person-centered language and take the pledge at: http://www.r-word.org/


Gluten-free, Casein-free Diet May Help Some Children With Autism

A gluten-free, casein-free diet may lead to improvements in behavior and physiological symptoms in some children diagnosed with an autism spectrum disorder (ASD), according to researchers at Penn State. The research is the first to use survey data from parents to document the effectiveness of a gluten-free, casein-free diet on children with ASD.For more information from Penn State University on this topic, go to: http://live.psu.edu/tag/Health_and_Medicine


Helping Individuals with I/DD Adjust to Community Living

We have received the following request from a DDNA member for the following information:  "I am the FNP/DON of a state run ICFID/DD in southwestern Virginia. I've been here 10 years and have been in DDNA and a CDDN for 8 years. Our state just negotiated w/ the DOJ to close 4 of the 5 ICFID/DD facilities over the next 8 years. The first is slated to close in 2014, then one in 2015, us in 2018, and the last in 2020. Our residents and their families and our staff are taking the news very hard, especially since, as of this moment, there are not a lot of community supports in place in our area. If any of you have had a similar experience, please let me know how you handled it and how your residents are now doing."

We have posted this request on the I/DD Nursing Issues forum on the DDNA website and ask all DDNA members who might have insight or experience in this area to take a moment to respond to this request for sharing your experience. 
To respond, just click on "Forums" in the Menu Bar and scroll down to "I/DD Nursing Issues."

Thanks to all who take the time to answer your fellow member!


Free Webinar March 7th on Hospital Care of Persons with IDD

Individuals with Intellectual and Developmental Disabilities (IDD) often have complex and fragile health issues which commonly result in the need for acute health interventions. The ability to provide accurate and safe health practices in an acute health emergency is often very challenging due to a number of circumstances including language barriers, miscommunication, lack of chronic disease data, as well as a lack of training by health professionals of the complexities of health issues in those with IDD. Health outcomes, quality of life, support staff and family burden as well as a significant economic strain could be alleviated by the creation of educational events and the development of standards of care practices.

The AADMD in association with its partner organizations is offering a series of Webinars in which we will review the various challenges and issues too often encountered to those with IDD. Each Webinar will be led by national and international leaders in the field who will offer suggestions and recommendation to help alleviate many of the health disparities which currently exist. A brief Q & A will follow each talk. This second Webinar will focus on specific issues that exist within the Hospital system. The creation of a hospital care plan will be reviewed.

The Webinars are offered free of cost, and registration is required. Professional educational credits and participation credits will be available for future Webinars. These presentations would be of great interest to self advocates, advocates, health professionals, emergency care professionals, as well as to organizations and agencies that support those with IDD.

Future Emergency Healthcare Webinar presentations will be announced as they become available. An archived version of the Webinar will be available at http://aadmd.org/

Title: Emergency Healthcare in Adults with IDD;Part 2 Hospital Care
Date: Wednesday, March 7, 2012
Time: 7:00 PM - 8:00 PM EST

After registering you will receive a confirmation email containing information about joining the Webinar.

System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server

Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer

Space is limited.
Reserve your Webinar seat now at:
https://www3.gotomeeting.com/register/791056070



Why Children with Down Syndrome Have Higher Leukemia Risk

Children with Down syndrome have an increased risk of developing leukemia, in particular acute megakaryoblastic leukemia (AMKL) and acute lymphoblastic leukemia. Through their studies in a mouse model of DS, researchers have now identified a potential explanation as to why children with DS are at increased risk of developing AMKL. In doing so, they have also identified a candidate therapeutic target. To read more about these studies, click here to access the website of the University of Minnesota's Masonic Cancer Center: http://www.cancer.umn.edu/research/programs/penewleads.html


Minority Children with Autism More Delayed Than Caucasian Peers

The first prospective study of ethnic differences in the symptoms of autism in toddlers shows that children from a minority background have more delayed language, communication and gross motor skills than Caucasian children with the disorder. Researchers at the Kennedy Krieger Institute concluded that subtle developmental delays may be going unaddressed in minority toddlers until more severe symptoms develop. For more information, go to the website of the Kennedy Krieger Institute at:  http://www.kennedykrieger.org/overview/news/new-study-shows-minority-toddlers-autism-are-more-delayed-affected-caucasian-peers


Brain Differences Seen at 6 Months in Infants Who Develop Autism

Researchers have found significant differences in brain development in infants as young as six months old who later develop autism, compared with babies who don't develop the disorder. The new research suggests that autism doesn't appear abruptly, but instead develops over time during infancy. For more information about this research, go to the website of the Children's Hospital of Philadelphia:  http://www.research.chop.edu/publications/press/?ID=669


Study Shows Autoinjector Safe for Life-Threatening Seizures

Using an autoinjector device to deliver anti-seizure drugs into muscle is a fast, safe and effective way to treat status epilepticus, a prolonged type of seizure that lasts longer than five minutes.  A study, funded by the U.S. National Institute of Neurological Disorders and Stroke (NINDS) appears in the Feb. 16 issue of the New England Journal of Medicine. report.  

Could the autoinjector be safely used by non-medical personnel, such as family or friends? At this point, it has has been shown to have great value value when used in the clinical settings by paramedics.  The safety of its use by non-medical persons, such as family members has not yet been clarified. Currently, the use of midazolam requires on-site medical supervision, and further research is needed before autoinjectors with the drug might be available for use by epilepsy patients and their family members.

For more information from the National Institutes of Health, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_121968.html


Teens with Autism Preoccupied with Television and Video Games

About 60 percent of teens with autism spectrum disorders (ASD) spent most of their time watching TV or videos, as compared to only 28 percent of typically developing adolescents.  This was regardless of symptoms, functional level, or family status.  In addition 41 percent of teens with autism spent most of their free time playing video games, while only 18 percent of youths in the general population are considered to be high users of video games.  Additionally, this study from Brown School at Washington University in St. Louis found that youth with ASD were less likely to use email or social media, with 64.4 percent of youth with AS not using email or chatting at all.  For more information about this study from the National Institutes of Health, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_121913.html




AMA Supports Medically Underserved Population Status for Persons with DD

The fact that people with intellectual and developmental disabilities are medically underserved has never be a secret to DDNA members.  In fact, at our conference in Reno two years ago, there was much discussion of this topic, even though the outcome of that discussion was disheartening.  Now the American Medical Association is lending its support to this official designation, and also to changing the wording from "mentally retarded" to "intellectually disabled."  Classification as medically underserved makes more resources available for training, research, and treatment for the population of people with I/DD.  For a quick synopsis, you can read an article on the Psychiatric News website at:  http://psychnews.psychiatryonline.org/newsArticle.aspx?articleid=181073 
A link to the AMA resolution itself can be found at:  http://www.ama-assn.org/resources/doc/cms/i11-cms-report3.pdf



National Plan on Dementia and Adults with Intellectual Disabilities

The National Task Group on Intellectual Disabilities and Dementia Practices has issued a plan for improving the community care of adults with intellectual disabilities affected by dementia. "This is an issue that will only grow in intensity and the nation needs to address this challenge head on" said Dr. Seth M. Keller, the President of the AADMD and co-chair of the National Task Group. The Group's report, 'My Thinker's Not Working': A National Strategy for Enabling Adults with Intellectual Disabilities Affected by Dementia to Remain in Their Community and Receive Quality Supports," summarizes and addresses some of the challenges facing the nation due to the increasing rate of dementia found in older people with intellectual disabilities.

The report offers recommendations for the improvement of services and suggests that its findings and recommendations be considered and integrated into the reports and plans being developed by the federal Advisory Council on Alzheimer's Research, Care, and Services -- under the National Alzheimer's Project Act. The report notes that Alzheimer's disease mostly impacts adults with lifelong intellectual disabilities in the same ways as it does other people, but sometimes has a more profound effect due to particular risk factors - including genetics, neurological injury, and deprivation.

Dr. Keller said that "families are often the main caregivers for adults with an intellectual disability and when Alzheimer’s occurs they are profoundly impacted." Such families not only include parents, but also siblings and other relatives. The report notes that many such families have difficulties in providing extensive care at home once dementia becomes pronounced and care demands overwhelm them.

The report also notes that it is important to recognize signs of dementia-related changes early, and identified an instrument potentially applicable to adults with an intellectual disability. This instrument could also be used for the cognitive assessment provision of the annual wellness visit under the Affordable Care Act. The report recommends adoption of such an instrument by providers and regulatory authorities to identify those adults at-risk due to early signs of mild cognitive impairment or dementia.

Dr. Matthew P. Janicki, of the University of Illinois at Chicago, the other co-chair, said that "generally there is little information on this issue and much needs to be done to make people more aware of it." He noted that the Group recommended an intensified community education effort to enhance the capabilities of staff, clinicians, community providers, and administrators. Further, education is needed to raise awareness of dementia and how it affects adults with an intellectual disability among families and other caregivers.

The report notes that dementia has a devastating impact on all people – including people with an intellectual disability and their friends, families and the staff who may be involved with them as advocates and caregivers. The National Task Group wants its report to contribute to the work of the federal Advisory Council on Alzheimer's Research, Care, and Services. Plans are also in place to produce educational materials, develop guidelines for care, and hold training sessions across the country.

DDNA has several members who are serving on this National Task Group.

The report and its 'Action Plan' is available at these websites: aadmd.org/ntg/thinker and www.rrtcadd.org.


Webinar on Emergency Healthcare in Adults with IDD

Our colleagues at the American Academy of Developmental Medicine and Dentistry have invited DDNA members to participate in this free webinar (click on "Click here to View Full Post" for more information).  Please note that the number of people who can register is limited; however, it will be archived on the AADMD website. To reserve your seat at the webinar, go to:  https://www3.gotomeeting.com/register/989372862


 


Emergency Healthcare in Adults with IDD; An Introduction to the Issues and Challenges.


Join us for a Webinar on February 16



Space is limited.
Reserve your Webinar seat now at:
https://www3.gotomeeting.com/register/989372862


Individuals with Intellectual and Developmental Disabilities (IDD) often have complex and fragile health issues which commonly result in the need for acute health interventions. The ability to provide accurate and safe health practices in an acute health emergency is often very challenging due to a number of circumstances including language barriers, miscommunication, lack of chronic disease data, as well as a lack of training by health professionals of the complexities of health issues in those with IDD. Health outcomes, quality of life, support staff and family burden as well as a significant economic strain could be alleviated by the creation of educational events and the development of standards of care practices.

The AADMD in association with its partner organizations is offering a series of Webinars in which we will review the various challenges and issues too often encountered to those with IDD. Each Webinar will reveal personal stores by self advocates as well as a presentation and discussion by national and international leaders in the field who will offer suggestions and recommendation to help alleviate many of the health disparities which currently exist. A brief Q & A will follow each talk. The first presentation will be an introduction to the entire series. We will provide a broad outline and discussion of the various emergency healthcare challenges and issues that exist.

The Webinars are offered free of cost, and registration is required. Professional educational credits and participation credits will be available for future Webinars. These presentations would be of great interest to self advocates, advocates, health professionals, emergency care professionals, as well as to organizations and agencies that support those with IDD.

Future Emergency Healthcare Webinar presentations will be announced as they become available. An archived version of the Webinar will be available at http://aadmd.org/

 

Title:

Emergency Healthcare in Adults with IDD; An Introduction to the Issues and Challenges.

Date:

Thursday, February 16, 2012

Time:

7:00 PM - 8:00 PM EST

 

After registering you will receive a confirmation email containing information about joining the Webinar.

 

System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server


Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer





 





New Handbook for Fragile X-associated Disorders

The National Fragile X Association has made a new handbook about fragile X-associated disorders (FXD) available online for families, health care providers, counselors, and educators.  You can access the handbook (which may take a moment to download) at:  http://www.fragilex.org/wp-content/uploads/2012/01/Handbook-FXD_3rd_Edition.pdf


Early Signs of Autism in Baby Brains

According to researchers at the University of London, children who develop autism already show signs of different brain responses in their first year of life.  In the future, this study may help doctors diagnose the disorder earlier. British researchers studied 104 babies at 6 to 10 months and then again at 3-years-old, and found that those who went on to develop autism had unusual patterns of brain activity in response to eye contact with another person.The findings suggest direct brain measures might help predict the future risk of autism in babies as young as 6 months old.  For more information from the National Institutes of Health, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_121261.html


Restraint Related Deaths of Adults and Children with Disabilities

A national review of restraint-related deaths of adults and children with disabilities was conducted by Equip for Equality, which is a private not-for-profit legal advocacy organization designated by the governor to operate the federally mandated Protection and Advocacy System (P&A) to safeguard the rights of people with physical and mental disabilities, including developmental disabilities and mental.  Their findings were published in 2011 in "National Review of Restraint Related Death of Children and Adults with Disabilities:  The Lethal Consequences of Restraint."  To read the results of this study, go to:  http://www.equipforequality.org/publications/national-death-study.pdf


Severe Brain Injury When Young May Have Long-Term Effects

Two Australian studies looked at the impact of traumatic brain injury in children as young as 2 years, and found that these injuries affected cognitive function, IQ and even behavior for some time. However, the researchers also found that recovery from traumatic brain injury can continue for years after the initial injury. And, a child's home environment can positively influence recovery if the child lives in a stable, caring home. For more information about these studies from the National Institutes of Health at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_121080.html


DDNA's 2012 20th Anniversary Conference Registration Now Open!

How can you find out more about the Conference and how to register?  Look right to your right on this page!  We've got links that take you to all the information you need.  If you have any other questions about the conference, please email us or give us a call at 800-888-6733 (8-5 ET, M-F).  We hope to see everyone in Orlando.  We've got an outstanding educational conference with lots of 20th Anniversary special surprises and fun in the sun!


Proposed Changes in Diagnostic Criteria for Autism

Proposed changes to the diagnostic definition of autism, which will be published in the fifth edition of the American Psychiatric Association’s (APA) “Diagnostic and Statistical Manual of Mental Disorders (DSM-5)”, may affect the proportion of individuals who qualify for a diagnosis of autism spectrum disorder, according to preliminary data from Yale School of Medicine researchers.  For more information, go to:  http://news.yale.edu/2012/01/20/autism-redefined-yale-researchers-study-impact-proposed-diagnostic-criteria


Free CE Webinar: Nurses Guide to Communicating and Interacting with Persons with Disabilities

The Illinois Disability and Health Program is pleased to inform you of an upcoming webinar we are co-hosting with the Western Illinois Area Health Education Center/i-NET.  The Webinar is designed to provide nurses, social workers, and other interested healthcare providers with an increased understanding and insight into how to care for and communicate more effectively with patients with disabilities, including those with sensory, physical, and cognitive limitations. 
DATE:  March 15, 2012
TIME:  12:00 – 1:00
(with question and answer session at the end of the presentation).
1 Nursing Contact Hour or 1 Social Worker Clock Hour will be available.  There is no cost for the Webinar or CEUs. 
Please see the attached flyer for more information and a printable registration form or register online at:  http://www.illinoisnetwork.org/programs/?id=35

Feel free to help us spread the word!!  If you have any questions or need any accomodation to participate in this webinar, please contact me. 

Carla Cox, MPH, CHES
Program Manager, Disability and Health
Illinois Department of Public Health
535 W. Jefferson Street
Springfield, IL 62761
217-557-2939
Fax:  217-782-1235

"Having a disability does not mean you can't be healthy."  U.S. Surgeon General, 2005


Memantine Not Effective for Treating Alzheimer's in Persons with Down Syndrome

Memantine, a drug commonly used to treat patients with Alzheimer's disease, does not appear to be effective for people older than 40 years who have Down syndrome and Alzheimer's, according to a new study done at the Wolfson Centre for Age-Related Diseases at King's College London.  It also may have caused serious side effects and fatalities in members of the study group.  More more information from the National Institutes of Health, go to: http://www.nlm.nih.gov/medlineplus/news/fullstory_120631.html


Gut Bacteria in Children with Autism Differ From Non-Autistic Children

Individuals with severe autism often suffer from another problem as well: gastrointestinal disturbances. The underlying reason for this apparent link is unknown, but a study in mBio this week reveals that the guts of autistic children differ from other children in at least one important way: many children with autism harbor a genus of bacteria in their guts that non-autistic children do not. For more information, go to:  http://mbioblog.asm.org/mbiosphere/2012/01/gut-bacteria-in-autistic-children-differ-from-non-autistic-children.html


This is National Folic Acid Awareness Week

Neural tube defects, such as anencephaly and spina bifida, can be caused by low levels of maternal folic acid.  Health-care providers should encourage every woman to consume 400 mcg of synthetic folic acid daily from fortified foods or supplements, or a combination of the two, in addition to consuming food folate from a varied diet. Additional information about folic acid is available at http://www.cdc.gov/folicacid.


DDNA Member Seeking Info on Down Syndrome and Alzheimers Assessment Tools

DDNA Member Lynne Carroll is completing work on her MSN in Nursing Education and is seeking help from fellow DDNA members regarding the use of focused healthcare checklists in the areas of Down Syndrome and Alzheimer's disease for use in collaboration with physicians. If you are interested in this issue and/or can help Lynne, please respond to her post on this topic in the forum on Aging and DD at: http://ddna.org/forums.php


Dormant Gene May Hold Key to Angelmen Syndrome

Scientists working in cell culture and in mice have been able to correct the loss of gene activity underlying a rare but severe developmental disorder by turning on a gene that is normally silenced in brain cells. Further testing of the identified compound that activates the gene will determine whether it has potential as a genetically-based treatment for the disorder, Angelman syndrome.  For more information, access this bulletin from the National Institute of Mental Health at: http://content.govdelivery.com/bulletins/gd/USNIMH-248e8d


Severe Outcomes from Influenza in Children With Neurodevelopmental Disorders

Children with neurologic and neurodevelopmental conditions are at increased risk for severe outcomes from influenza, including death (1–3). In April 2011, the Ohio Department of Health and CDC investigated an influenza outbreak that began in February 2011 in a residential facility for 130 children and young adults with neurologic and neurodevelopmental conditions. This report summarizes the characteristics and clinical courses of 13 severely ill residents with suspected or confirmed influenza; 10 were hospitalized, and seven died. Diagnosis is challenging in this population, and clinicians should consider influenza in patients with neurologic and neurodevelopmental conditions who have respiratory illness or a decline in baseline medical status when influenza is circulating in the community. For more information, go to:  http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6051a1.htm?s_cid=mm6051a1_e


Nominations Now Open for DDNA Vice-President

The call for nominations for the office of Vice-President of the DDNA Board of Directors is now open.  Current DDNA nurse members who wish to to be considered as a candidate for this office must submit the required application and credentials to the office of DDNA postmarked on or before March 31st. For more information, go to:  http://ddna.org/pages/elections
Please make sure to click on and read through the links in the Quick Link box regarding the Election Overview, Election Schedule, Board Mission, and Board Responsibilities.  If you have any questions, feel free to contact DDNA Headquarters.


Study Links Autism and Immune System Changes

Researchers at the University of South Florida have found that elevated levels of an amyloid precursor protein (APP) are tied to immune system abnormalitiesthat mimic those seen with autism spectrum disorders. The research, which used a mouse model, suggested that abnormalities in the immune system may be linked to pervasive developmental disorders. Investigators believe the protein fragment might serve as both a biomarker for autism and a new research target for understanding the physiology of the disorder. For more information, go to:  http://health.usf.edu/nocms/publicaffairs/now/pdfs/Tan_FASEB%20J_2011.pdf


Diet and Nutrient Levels Linked to Cognitive Ability and Brain Shrinkage

Studies done at the Oregon Health and Science University and the Linus Pauling Institute have found that older adults with higher levels of several vitamins and omega 3 fatty acids have better performance on mental acuity tests and less brain shrinkage.  "Junk food" diets produced the opposite result.  Blood analysis showed that nutrient status accounted for a positive variation in mental performance of 17% for thinking and memory scores and a 37% variation in brain size.  People with I/DD may not be offered or have the option to choose a diet that provides a wide range of fruits, vegetables, and fish.  What is the usual diet for the people for whom you provide care and services?  Do they eat a lot of junk food, trans-fatty baked goods, fried food, packaged food? For more information about this study, go to:  http://www.eurekalert.org/pub_releases/2011-12/osu-dnl122711.php


Autism Hidden in Plain Sight: Undiagnosed Adults

As more children are diagnosed with autism, researchers are trying to find unrecognized cases of the disorder in adults.  An article in the Los Angeles Times presents stories about adults with autism who were either never diagnosed or misdiagnosed with mental illness.  It also discusses research done in Great Britain that found that 1% of people living in British households had some form of autism, roughly the same rate that the U.S. Centers for Disease Control and Prevention estimates for children in America today.  To read this very interesting article in the LA Times, go to:  http://www.latimes.com/news/local/autism/la-me-autism-day-four-html,0,6403471.htmlstory


Fetal Exposure to Epilepsy Drug Might Raise Autism Risk

Children exposed to the epilepsy drug valproate have a nearly three times higher risk of having an autism spectrum disorder, new research finds.  Researchers in Denmark used national birth data that included nearly 656,000 children born in that country between 1996 and 2006 to 428,000 women. Using a national prescription drug registry, they identified women who had filled a prescription for valproate (Depakote) shortly before pregnancy through the day of the child's birth.  For more information about this study, go to the website of the National Library of Medicine at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_119372.html


Med Decreases Repetitive Behaviors in Some Adults with Autism

Researchers at Albert Einstein College of Medicine and the Autism and Obsessive-Compulsive Spectrum Program at Montefiore Medical Center in New York City found that fluoxetine decreased repetitive behaviors in adults with autism.  After three months, 50 percent of the group (37 individuals) receiving fluoxetine showed a reduction in repetitive behaviors as assessed using a scale that measures obsessive-compulsive symptoms compared to 8 percent in the placebo group. In addition, 35 percent on fluoxetine showed an overall improvement in their autism symptoms compared to none in the placebo group. For more information from the National Library of Medicine, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_119318.html


Received Your PhD Within the Past Four Years?

The Department of Disability and Human Development, University of Illinois at Chicago is inviting applications from qualified candidates in any relevant discipline for postdoctoral research training experiences in research to improve health, employment, and community engagement and participation outcomes for persons with disabilities. This interdisciplinary post-doctoral program emphasizes preparing scholars to conduct research that has real world impact..

The training program includes:  a) didactic preparation, b) close mentoring by highly qualified researchers, c) immersion in ongoing research, and d) field placement in carefully selected programs or organizations where employment of disabled persons is being addressed. Trainees undergo a structured and closely-supervised training process with a range of opportunities for didactic and experiential training and with common expected milestones.  Each trainee’s program will be individually designed to assure that the trainee has access to the most rigorous and relevant concepts and research methodologies for his/her chosen focus for studying vocational needs, services and outcomes.

Applicants must have received their Ph.D. or M.D. degrees within the past four years.  The length of the fellowship experience will vary.  Ordinarily, it will be for one to two years.  Trainees receive a competitive salary and full benefits, tuition support for any courses taken and a modest travel budget. Applicants should submit a curriculum vita and three reference contacts.  Copies of relevant publications and a brief statement of research experience and research goals must be provided for full consideration.

The appointments can begin any time. Submit documentation to:        

                                                   Tamar Heller, Ph.D.
                                                   Professor/Head
                                                   Department of Disability and Human Development (MC 626)
                                                   The University of Illinois at Chicago
                                                   1640 West Roosevelt Road Chicago, IL 60608-6904

If you would like Dr. Heller's contact information, you may call DDNA to request it.


                                               

                                                   theller@uic.edu

                                                   312-413-1647          

 


New Forum on Genetics Moderated by Joni Bosch, ARNP, PhD

Are you interested in genetics as they apply to developmental disabilities?  You can join DDNA Forum Moderator, Joni Bosch, ARNP, PhD, there with your questions, comments, and information to share about genetics.  Access the Forums page of this website and scroll down to the Genetics forum at:  http://ddna.org/forums.php


Neurons Grown From Skin Cells May Hold Clues to Autism

Researchers funded by the National Institutes of Health have grown patients' skin cells into neurons to discover what goes wrong in the brain in Timothy Syndrome. Affected children often show symptoms of autism spectrum disorders along with a constellation of physical problems. The findings in Timothy Syndrome patient iPSCs follow those in Rett Syndrome, another single gene disorder that often includes autism-like symptoms. The mechanisms identified in this study may become potential targets for developing new therapies for Timothy Syndrome and may also provide insights into the neural basis of deficits in other forms of autism.  Alysson Muotri, Ph.D., and colleagues at University of California, San Diego, reported deficits in the protrusions of neurons, called spines, that help form connections, or synapses. The Dolmetsch team’s discovery of earlier (neuronal fate) and later (altered connectivity) defects suggest that disorders on the autism spectrum affect multiple stages in early brain development. For more information, go to:  http://www.nih.gov/news/health/nov2011/nimh-27.htm


Statement of Organization, Functions, and Delegations of Authority; Federal Administration on Developmental Disabilities

The Administration for Children and Families (ACF) has reorganized the Office of the Assistant Secretary (OAS) and the Administration on Developmental Disabilities (ADD). This reorganization realigns the President's Committee for People with Intellectual Disabilities Staff within the OAS and moves the function to ADD as a result of the Charter Amendment for PCPID governed by 92 signed by the Secretary, HHS, on May 9, 2011. To read more about the Statement of Organization, Functions, and Delegations of Authority in the Federal Register, go to: http://www.federalregister.gov/articles/2011/11/23/2011-30176/statement-of-organization-functions-and-delegations-of-authority-administration-on-developmental


Very Early Bird Conference Registration Now Available

DDNA has had some members contact us to ask whether they could register and pay now for the 2012 Annual Education Conference in Orlando, which is taking place in May.  The answer is yes --- and the early bird may get the worm! This year, everyone who registers on or before the early bird registration deadline will be entered into a drawing for a free hotel room for the preconference and conference nights.  DDNA will pay for up to four nights of the lucky winner’s hotel room at the conference hotel, which is the Rosen Plaza on International Drive in Orlando, Florida!

Some members have told us that their employers have money that must be spent before the end of December or it will be lost, and they want to use it for conference attendance.  You may want to check to see whether your employer has such year-end funds available that could be used to provide you with DD-specific nursing education, because DDNA’s 20th Annual Conference is going to be an outstanding educational opportunity.  If you or your employer has any questions about the conference, please feel free to call DDNA during business hours ET. 

We hope to see you in sunny Orlando, Florida, at our exceptional 20th Anniversary DDNA Conference . . . . maybe enjoying your free hotel stay!  And once we get the conference information up on the website, make sure to check that early bird registration deadline date, so you do not miss being eligible for the hotel drawing.


Mini Nutritional Assessment Useful In Persons with IDD

Research in China has shown that the Mini Nutritional Assessment is useful for assessing the risk of malnutrition in persons with I/DD.  The Mini Nutritional Assessment is appropriate for screening for under- and over-nutrition in adults with intellectual disabilities. The Mini Nutritional Assessment (especially the version without body mass index) can make routine monitoring of nutritional status of these patients an easier task. For more an abstract of an article in the Journal of Clinical Nursing on this topic, you can go to the National Library of Medicine at:  http://www.ncbi.nlm.nih.gov/pubmed/22007997


Antipsychotic Drugs Tied to Diabetes Risk in Children

Antipsychotic medications are sometimes used to manage aggressive behavior in children with autism. New findings, published in the journal Pediatrics, add to concerns that these medications may ultimately lead to diabetes in some children. For more information, go to the National Library of Medicine at:  http://www.nlm.nih.gov/medlineplus/news/fullstory_119007.html


Cholesterol Levels Elevated in Toddlers Taking Anti-HIV Drugs

Pediatric HIV is considered a developmental disability.  Toddlers receiving anti-HIV drugs have higher cholesterol levels, on average, than do their peers who do not have HIV, according to researchers at the National Institutes of Health and other institutions.  A study in the journal AIDS suggests that it would be a good idea for young children taking protease inhibitors to have their cholesterol monitored periodically to determine whether they face any increased risk of heart disease as they grow older.  For more information from the National Institutes of Health, go to: http://www.nih.gov/news/health/nov2011/nichd-21.htm


Women with Disability Less Likely to Get Mammograms

According to a CDC study, women with a disability might be less likely to obtain a mammogram within the previous two years, compared to women without a disability. Prevalence of self-reported mammography use is lower for women with a disability (72.2% for women 40 years of age or older and 78.1% for women 50 to 74 years of age) than women without a disability (77.8% and 82.6%, respectively).

Breast cancer is the most frequent type of cancer among women and the second leading cause of cancer-related deaths among women. Focus on health care disparities has centered on reducing racial and ethnic disparities, with relatively little attention to disability. Given the prevalence of disability among women in the United States (an estimated 29.3% of women 40 years of age or older and 31.3% of woman 50 to 74 years of age had a self-reported disability), efforts to reduce disparities in breast cancer screening might be more effective if they target all segments of the populations and explicitly include women with a disability.

For more information from the CDC on this topic, go to:  http://www.cdc.gov/Features/dsMammograms/



NIH-Funded Study Shows Pre-birth Brain Growth Problems Linked to Autism

Children with autism have more brain cells and heavier brains compared to typically developing children, according to researchers partly funded by the National Institutes of Health. Published in the Journal of the American Medical Association on Nov. 9, 2011, the small, preliminary study provides direct evidence for possible prenatal causes of autism.

"Earlier studies of head circumference and early brain overgrowth have pointed us in this direction, but there have been few quantitative neuroanatomical studies due to the lack of post-mortem tissue from children with autism," said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), part of NIH. "These new results, along with an earlier study reporting altered wiring of the prefrontal cortex, focus our attention on this critical area of the brain in autism."

For more information, go to the website of the National Institutes of Health at:  http://www.nih.gov/news/health/nov2011/nimh-08.htm


Where a Child Is Tested May Affect Autism Diagnosis

Whether health professionals diagnose a child with autism or with a milder form of the neurodevelopmental disorder such as Asperger syndrome isn't determined only by the child's symptoms, but by where the child is assessed, a new study finds. Researchers found wide variability at autism centers across the nation in the criteria health professionals used to determine whether a child should be diagnosed with "autistic disorder" or instead receive a diagnosis of a subtype of autism, including pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
For more information from the National Library of Medicine, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_118410.html


Dogs and Cats as Pets in Group Homes?

Got pet policies?  A member of DDNA has asked us to inquire:  "Has anyone had experience with having dogs/cats as permanent pets in group homes with medically fragile individuals? Some of the staff at our facility are interested in adopting a pet and our medical director has approved, however a significant number of staff members, including some of the nurses, are strongly opposed. Any thoughts/advice?"

If you would like to respond to this question, go to the I/DD Nursing Issues Forum at: http://ddna.org/forums.php
Then click on View Post in that forum.

While you are at the forums, make sure to take a look around at this new tool for communication among members.  If you would like to moderator a forum, you can see a list of available forums at the top of the screen.  Just click on the sentence that says:  " href="http://ddna.org/forums.php">Click here to view all available forums.

Also, feel free to read the posts in the forums that are already there, and respond if the topic interests you.


DDNA Member Seeking Info on Transition to Independent Housing

There is a request on the DDNA forum page from a member that reads:  "Virginia is beginning to move people from sheltered living arrangements to more independent housing opportunities.  The NOVA (Northern Virginia DDNA Chapter) nurses are interested in communicating with nurses who have successfully transitioned persons with complex health issues, such as (persons with G/J, transgastric enteral tubes, respiratory health issues) from institutions to the community at large. We are anxious to network with all of you who meet these challenges as a matter of routine to meet person-centered needs."

If you are an active member of DDNA and willing to discuss this topic with the NOVA nurses, please go to:  www.ddna.org/forums.  Then scroll down to the forum on "I/DD Nursing Issues" and click on the button that says "View post."  You can respond to NOVA's request for information there.  Please note you must be logged in to the DDNA website with your username and  password.

Thanks in advance for your willingness to share your knowledge!  


Possible Genetic Link to Autism in Boys Identified

A gene variation associated with an increased risk of autism in boys has been identified by scientists. The results showed a link between a variation in the gene for transducin beta-like 1X-linked (TBL1X) and an increased risk of autism spectrum disorders (ASD) in boys. TBL1X is part of the Wnt-signaling pathway involved in the system that controls embryonic neurological development and the maintenance of brain function in adults.For more information from the Library of Medicine, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_118345.html


Children With Head Injuries Can Face a Lifetime of Problems

Children can face a lifetime of problems after suffering head injuries from falls, car accidents and other mishaps, according to a new study. From communication deficits to trouble with daily self-care, the effects of moderate to severe brain injuries can lead to "substantial long-term reduction" in quality of life for children with traumatic brain injury, the researchers found. The findings "emphasize the need for prevention," said study author Dr. Frederick Rivara, professor of pediatrics at the University of Washington School of Public Health in Seattle. "Many of these injuries can be prevented by using bicycle helmets, and kids being buckled up in seatbelts, making sure there are gates on stairways." Schools also should consider different rules for football, he added.

The study, published online Oct. 24 and in the November print issue of Pediatrics, looked at 729 children under 18 years old treated for brain injuries at emergency rooms in Seattle and Philadelphia between 2007 and 2008. Most of the injuries resulted from falls and car crashes, the study noted. Few were related to assault or abuse, said Rivara.  Levels of the children's functioning before they were injured were determined through phone interviews, usually with parents. Tests were done three months, one year and two years later to assess different skills and behaviors. They included whether the children were depressed, played or interacted with others, were teased, had trouble concentrating or remembering, and could do things "that other children can do," said Rivara.

For more information from the National Institutes for Health, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_118038.html



A Parent’s Guide to Autism Spectrum Disorder

This guide from the National Institute of Mental Health is intended to help parents understand what autism spectrum disorder (ASD) is, recognize common signs and symptoms, and find the resources they need. It’s important to remember that help is available.  For more information, go to:  http://www.nimh.nih.gov/health/publications/a-parents-guide-to-autism-spectrum-disorder/index.shtml


Our Brains Are All the Same: But Genes Can Make Things Go Awry

Despite vast differences in the genetic code across individuals and ethnicities, the human brain shows a "consistent molecular architecture," say researchers supported by the National Institutes of Health. The finding is from a pair of studies that have created databases revealing when and where genes turn on and off in multiple brain regions through development. "Having at our fingertips detailed information about when and where specific gene products are expressed in the brain brings new hope for understanding how this process can go awry in schizophrenia, autism and other brain disorders," said NIMH Director Thomas R. Insel, M.D. For more information, go to:  http://www.nih.gov/news/health/oct2011/nimh-26.htm


Intellectual and Developmental Disabilities: Where the Clinical Laboratory Meets Research

The University of Wisconsin Innovations in Medical Education offers a newly released 25-minute video entitled "Intellectual and Developmental Disabilities:  Where the Clinical Laboratory Meets Research" that discusses the importance of early and accurate diagnosis of developmental disabilities in children.  The presentation is made by Jennifer Laffin, PhD, FACMG, who is an assistant professor in the Department of Pediatrics, and director of the Wisconsin State Laboratory of Hygiene Clinical Genetics Laboratories (Cytogenetics and Molecular). To view the presentation, go to:  http://videos.med.wisc.edu/videos/34720


Protective Protein May Help Prevent Cerebral Palsy

Scientists at Washington University School of Medicine in St. Louis have shown that a protein may help prevent the kind of brain damage that occurs in babies with cerebral palsy.  Using a mouse model that mimics the devastating condition in newborns, the researchers found that high levels of the protective protein, Nmnat1, substantially reduce damage that develops when the brain is deprived of oxygen and blood flow. The finding offers a potential new strategy for treating cerebral palsy as well as strokes, and perhaps Alzheimer's, Parkinson's and other neurodegenerative diseases. The research is reported online in the Proceedings of the National Academy of Sciences.  For more information, go to:  http://www.sciencecodex.com/read/scientists_prevent_cerebral_palsylike_brain_damage_in_mice-80842


What is MECPS Duplication Syndrome?

MECP2 duplication syndrome is a condition that occurs almost exclusively in males and is characterized by moderate to severe intellectual disability. Most people with this condition also have weak muscle tone in infancy, feeding difficulties, poor or absent speech, seizures that may not improve with treatment, or muscle stiffness (spasticity). Individuals with MECP2 duplication syndrome have delayed development of motor skills such as sitting and walking. Approximately one third of people with this condition cannot walk without assistance. Many individuals with MECP2 duplication syndrome have recurrent respiratory tract infections. These respiratory infections are a major cause of death in affected individuals, with almost half succumbing by age 25.


What is PPM-X Syndrome?

PPM-X syndrome is a condition characterized by psychotic disorders (most commonly bipolar disorder), a pattern of movement abnormalities known as parkinsonism, and mild to severe intellectual disability. Other symptoms include increased muscle tone and exaggerated reflexes. Affected males may have enlarged testes (macro-orchidism). Not all affected individuals have all these symptoms, but most have intellectual disability. Males with this condition are typically more severely affected than females, who usually have only mild intellectual disability.

For more information, go to the National Library of Medicine website at:  http://ghr.nlm.nih.gov/condition/ppm-x-syndrome



Make a Difference in Sunny Florida

Make a Difference in Sunny Florida

Quest Management Group, Inc. (QM), seeks a highly-qualified Registered Nurse to provide quality assurance for health-care services to residents of five Florida Intermediate Care Facilities for adults with developmental disabilities.

The person we seek is driven to ensure that each resident has the opportunity to enjoy good health, safety and to live full, rich lives with as much independence, choice and normalcy as possible. This person believes in the abilities of individuals with developmental disabilities, is mission-driven and is eager to work with a team committed to the best possible lives for our residents.

The position likely will be located in Tallahassee, with travel to Tampa, Panama City, Fort Walton Beach and Pensacola.

The Health Care Services Director, the organization's clinical leader, is charged with working with a mission-driven interdisciplinary team to establish and implement an integrated quality assurance program, provide support for nursing staffs, maintain a caring culture, ensure that ICF/DD and nursing standards of care are met, and ensure that each center surpasses those standards to assure holistic development of each resident.

Job requirements include: a degree in an appropriate discipline; Registered Nurse and Developmental Disabilities Nursing certifications; extensive nursing experience in the DD field; and supervisory experience. A Florida drivers' license, safe driving record, successful completion of Level II background screening, excellent verbal and written skills and willingness to travel extensively are required.

Salary is negotiable. Benefits include paid leave, group health insurance and 401K. Professional and salary growth opportunity is excellent. QM meets all EOC requirements. The position is available immediately.

Quest Management Group, Inc., currently manages six highly-regarded Pyramid, Inc., Adult Day Training programs. Pyramid, Inc., a private non-profit company, is known for its excellence in serving individuals with severe behavioral, cognitive and physical disabilities and for its innovative visual and performing arts programs. As of Jan. 1, 2012, QM will manage the five residential centers owned by Pensacola Care, Inc., a private non-profit company.

This is an exciting opportunity for a person who is highly trained, is committed to the well being of our residents, and is eager to work with a mission-driven team and with a company that rewards performance.

Applications must be accompanied by a resume and insightful cover letter. Applicants who do not submit cover letters will not be considered. An application form can be downloaded at www.questmngtgrp.com.

For more information, contact Human Resources Director Bill Fuller at bfuller@questmngtgrp.com or (850) 671-1690, or Chief Operating Officer Marilyn Yon at myon@questmngtgrp.com or (850) 671-1690.

Application packages can be mailed to Quest Management Group, Inc., 1349 E. Lafayette St., Tallahassee, FL 32301 or emailed to Mr. Fuller at the email address above.


Get Rid of Old Drugs Safely This Saturday

National Prescription Drug Take Back Day on Saturday, October 29, 2011, from 10:00 am - 2:00 pm. provides a venue for persons who want to dispose of unwanted and unused prescription drugs.  National Prescription Drug Take Back Day addresses a vital public safety and public health issue.  More than seven million Americans currently abuse prescription drugs, according to the 2009 Substance Abuse and Mental Health Services Administration’s National Survey on Drug Use and Health.  Each day, approximately, 2,500 teens use prescription drugs to get high for the first time according to the Partnership for a Drug Free America.  Studies show that a majority of abused prescription drugs are obtained from family and friends, including the home medicine cabinet.

DDNA has a medication management task force because the individuals we serve take many medications.  So in addition to checking your medication cabinets at home, you might want to also take this opportunity to properly dispose of unneeded medications that individuals you serve may have in their residential settings or medications in your work place.  In addition to keeping unused medications away from people who might abuse them, proper disposal of medications also helps to protect the environment.

DEA in conjunction with state and local law enforcement agencies throughout the United States conducted National Prescription Drug Take Back Days on Saturday, September 25, 2010 and April 25, 2011.  Nearly, 4,000 state and local law enforcement agencies throughout the nation participated in these events, collecting more than 309 tons of pills.

Here are the points of contact for locations to drop off drugs in your area. For more information go to: http://www.deadiversion.usdoj.gov/drug_disposal/takeback/index.html


Take Back Points of Contact
State Point of Contact Telephone
Alabama GS Pat Millier 205-321-8600
Alaska SA Jodie Underwood 206-553-5443
Arizona GS Mike Grafton 602-664-5600
Arkansas GS Lisa Barnhill 501-217-6500
California, Northern GS Glenn Moore 415-436-7900
California, San Diego and
Imperial Counties
GS Tom Lenox 858-616-4100
California, Central DPM Mike Lewis 213-621-6942
Colorado GS Helen Kaupang 720-895-4231
Connecticut DPM Nancy Coffey 617-557-2191
Delaware GS Regina Spaddy 215-238-5160
District of Columbia ASAC Alan Santos 202-305-8500
Florida DPM Barbara McGrath 954-306-4650
Georgia DPM Barbara Heath 404-893-7165
Hawaii DPM Mike Lewis 213-621-6942
Idaho SA Jodie Underwood 206-553-5443
Illinois, Southern  DPM Scott Collier 314-538-4600
Illinois A/GS John Pacella 312-353-3709
Indiana  GS Roxanne Peterson 317-613-4586
Iowa DPM Scott Collier 314-538-4600
Kansas  DPM Scott Collier 314-538-4600
Kentucky GS Martin Redd 502-582-5905
Louisiana GS Louis Lejarza 504-840-1100
Maine RAC Mike Wardrop 207-780-3331 x11
Maryland GS Terry Riley 410-244-3629
Massachusetts DPM Nancy Coffey 617-557-2191
Michigan ASAC Durell Hope 313-234-4000
Minnesota GS Jack Henderson 612-344-4130
Mississippi GS Louis Lejarza 504-840-1100
Missouri DPM Scott Collier 314-538-4600
Montana RAC Joe Kirkland 406-655-2900
Nebraska DPM Scott Collier 314-538-4600
Nevada DPM Mike Lewis 213-621-6942
New Hampshire RAC Leo Ducey 603-628-7411
New Jersey GS Andy Breiner 973-776-1100
New Mexico GS Philip Hart 505-346-7419
New York City, Long Island,
counties of Rockland,
Westchester, Putman,
Orange, Sullivan, and Dutchess
GS Jim Place 212-337-3900
New York ASAC Jim Burns 518-782-2000
North Carolina DPM Barbara Heath 404-893-7165
North Dakota GS Jack Henderson 612-344-4130
Ohio ASAC Tony Marotta 614-255-4200
Oklahoma DPM Lisa Sullivan 214-366-6900
Oregon SA Jodie Underwood 206-553-5443
Pennsylvania GS Regina Spaddy 215-238-5160
Rhode Island RAC John Kleczkowski 401-732-2550
South Carolina DPM Barbara Heath 404-893-7165
South Dakota DPM Scott Collier 314-538-4600
Tennessee DPM Barbara Heath 404-893-7165
Texas, Northern  DPM Lisa Sullivan 214-366-6900
Texas, West GS David Cota 915-832-6000
Texas, Southern  GS Kathy Brown 713-693-3670
Utah GS Lynette Wingert 406-655-2900
Vermont SA Tom Doud 802-951-6777
 Virginia ASAC Jay Gregorius 804-627-6300
West Virginia RAC Dennis Bolum 304-347-5209
Washington SA Jodie Underwood 206-553-5443
Wisconsin GS Jorge Jimenez 414-336-7372
Wyoming RAC Jay Erickson 307-778-1500
Caribbean ASAC Pedro Janer 787-277-4940


Alpha Thalassemia X-linked Intellectual Disability Syndrome

Alpha thalassemia X-linked intellectual disability syndrome is an inherited disorder that affects many parts of the body. This condition occurs almost exclusively in males. Males with alpha thalassemia X-linked intellectual disability syndrome have intellectual disability and delayed development. Their speech is significantly delayed, and most never speak or sign more than a few words. Most affected children have weak muscle tone (hypotonia), which delays motor skills such as sitting, standing, and walking. Some people with this disorder are never able to walk independently.

For more information about this syndrome, go to the National Library of Medicine's website at:  http://ghr.nlm.nih.gov/condition/alpha-thalassemia-x-linked-intellectual-disability-syndrome


Could Airway Abnormality Point to Autism?

A researcher has found an abnormality in the airways of children with autism that she says may be the first anatomical marker for the neurodevelopmental disorder. While examining children with autism who came in for a persistent cough, Dr. Barbara Stewart used a bronchoscope -- which can see down into the windpipe and the airways that branch into the lungs -- and noticed something different about those branches. In a typical lung, the windpipe, or trachea, branches into two main stems. From there, airways branch off the stems much like tree branches in a random, asymmetrical pattern, said Stewart, a pediatric pulmonologist at Nemours Children's Clinic in Pensacola, Fla.

But in the autistic children, those branches were instead doubled up and symmetrical. And the branches were smaller -- whereas in a normal lung you might have one large branch jutting off, in the autistic child, she'd see two, smaller branches instead.  Stewart went back and looked at the bronchoscopy results of 49 children with autism spectrum disorder and more than 300 kids without the condition. She found that all of the kids with autism had what she calls symmetrical "doublets" in their airways, while none of the normally developing kids did.

For more information from the National Library of Medicine, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_117874.html



Perinatal Antidepressant Stunts Brain Development in Rats

Rats exposed to an antidepressant just before and after birth showed substantial brain abnormalities and behaviors, in a study funded by the National Institutes of Health.  After receiving citalopram, a serotonin-selective reuptake inhibitor (SSRI), during this critical period, long-distance connections between the two hemispheres of the brain showed stunted growth and degeneration. The animals also became excessively fearful when faced with new situations and failed to play normally with peers – behaviors reminiscent of novelty avoidance and social impairments seen in autism. The abnormalities were more pronounced in male than female rats, just as autism affects 3-4 times more boys than girls. For more information, go to NIH News at:  http://www.nih.gov/news/health/oct2011/nimh-24.htm


Persons with I/DD at Higher Risk for Obesity

People with disabilities can find it more difficult to eat healthy, control their weight, and be physically active. This might be due to: 
            A lack of healthy food choices.
            Difficulty with chewing or swallowing food, or its taste or texture.    
            Medications that can contribute to weight gain, weight loss, and changes in appetite.
            Physical limitations that can reduce a person’s ability to exercise.
            Pain.
           A lack of energy.
           A lack of accessible environments (for example, sidewalks, parks, and exercise equipment) for exercise.
           A lack of resources (for example, money, transportation, and social support from family, friends, neighbors, and                 community members).

Children and adults with mobility limitations and intellectual or learning disabilities are at greatest risk for obesity. 20% of children 10 through 17 years of age who have special health care needs are obese compared with 15% of children of the same ages without special health care needs.

More information can be found on the CDC's Disability and Health Page at:  http://www.cdc.gov/ncbddd/disabilityandhealth/obesity.html

Learn more about physical activity for individuals with disabilities from the National Center on Physical Activity and Disability at: http://www.ncpad.org/External Web Site Icon


About Leigh Syndrome

Leigh syndrome is a severe neurological disorder that typically arises in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within a couple of years, usually due to respiratory failure. A small number of individuals develop symptoms in adulthood or have symptoms that worsen more slowly.

For more information about Leigh syndrome, go to:  http://ghr.nlm.nih.gov/condition/leigh-syndrome


Clobazam Approved as Adjunctive Rx for Lennox-Gastaut Seizures

On Oct. 21, the U.S. Food and Drug Administration approved Onfi tablets (clobazam) for use as an adjunctive (add-on) treatment for seizures associated with Lennox-Gastaut syndrome in adults and children 2 years of age and older. As Onfi is intended to treat a disease or condition that affects fewer than 200,000 people in the United States, it was granted orphan drug designation by the FDA.

“Lennox-Gastaut syndrome is a severe form of epilepsy that causes debilitating seizures,” said Russell Katz, M.D., director of the Division of Neurology Products in the FDA’s Center for Drug Evaluation and Research. “This is a difficult condition to treat, and it will be helpful to have an additional treatment option.”

Lennox-Gastaut syndrome usually begins before 4 years of age, and can be caused by a number of conditions, including brain malformations, severe head injuries, central nervous system infections, and inherited degenerative or metabolic conditions. In 30 to 35 percent of patients, no cause can be found. Patients commonly have frequent seizures of a wide variety, including tonic (stiffening of the body, upward deviation of the eyes, dilation of the pupils, and altered respiratory patterns), atonic (brief loss of muscle tone and consciousness, causing abrupt falls), atypical absence (staring spells), and myoclonic (sudden muscle jerks).

For more information, please see:  http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm276932.htm


Men with Disabilities More Vulnerable to Sexual Assault

Men with disabilities are four times more likely to be sexually assaulted then nondisabled men.  New research studied data collected from nearly 22,000 people who took part in the 2005 Massachusetts Behavioral Risk Factor Surveillance System, an annual health survey of noninstitutionalized adults. The analysis revealed that about 14 percent of men with disabilities said they had been victims of sexual violence at some time in their lives, compared with less than 4 percent of nondisabled men, about 27 percent of women with disabilities and about 12 percent of nondisabled women.  For more information about the results of this study, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_117415.html


Boys With Autism May Grow Faster as Babies

A study from the Yale University Child Study Center found that boys with autism tend to grow faster as babies, with differences from typically developing infants seen in their head size, height and weigh.  For more information on this study, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_117308.html


ICD-9-CM Code for Wandering

CDC added the ICD-9-CM code for wandering, effective October 1, 2011, which is designed to promote better data collection for and understanding of wandering and to prompt important discussions about safety among healthcare providers, caregivers, and the person with a disability to the fullest extent possible.

Wandering places children and adults with autism spectrum disorders (ASDs) or other disorders in harmful and potentially life-threatening situations—making this an important safety issue for individuals affected and their families and caregivers. Children and adults with ASDs and other developmental disabilities are at higher risk of wandering off than are children and adults without these disorders or other cognitive disorders.

For more information, go to:  http://www.cdc.gov/ncbddd/autism/code.html


Employment Opportunity

The Director of Nursing Services serves as the clinical leader of the organization, establishing clear standards of care, developing a culture of caring and commitment, fostering teamwork amongst staff and promoting their clinical development. He/she coordinates and manages the medical and nursing care provided and assures the quality of care and compliance with state and federal requirements. The Director of Nursing Services, with other Senior Managers, establishes the strategic direction for the organization and serves as primary liaison with the medical community.

Primary Responsibilities:

- Establishes a strong culture of caring throughout the organization.

- Establishes and oversees the implementation of all nursing standards of care.

- Implements and overseas an integrated quality assurance program to ensure services delivered are of the highest quality and in accordance with the standards of care.

- Oversees admissions and marketing programs.

- Coordinates the services of the medical director, pharmacist, dietitian and other consultants.

- Provides administration leadership to the department.

Qualifications:

- Bachelor of Science degree in nursing required; Masters in nursing or a related field preferred.

- R.N., licensed in the state of New Hampshire

- A minimum of ten years of experience in nursing, five of which are in pediatrics.

- A minimum of three years of experience in a nursing leadership role.

- Experience with children with multiple disabilities and/or chronic health experience is preferred.

- Demonstrated strong interpersonal, organizational and management skills.

Send resume, cover letter and three letters of reference to Christine Hadley, 91 Maple Avenue, Keene, NH 03431.


Autism Grant Funding for Public Health Entities

If you work for a public health entity, you may be interested in this funding opportunity:  

The Association of Maternal and Child Health Programs (AMCHP) has announced the availability of grants designed to promote education on autism spectrum disorders and other developmental disabilities.  The deadline for applications is November 2nd.  10-15 grants of up to $15,000 each are available to public health entities such as Title V, Early Head Start and WIC programs to integrate the “Learn the Signs:  Act Early” materials and messages into programs that serve parents of young children, support the collaboration of Act Early State Teams, and evaluate progress.  The funding is provided by the Centers for Disease Control and Prevention (CDC) National Center for Birth Defects and Developmental Disabilities (NCBDDD).  AMCHP will provide ongoing technical assistance, disseminate resource materials, and link grantees to other states and experts on autism spectrum disorders and other developmental disabilities. 

For more information on “Learn the Signs:  Act Early” go to http://www.cdc.gov/ncbddd/actearly/

The funding announcement can be accessed at http://tinyurl.com/428uab6.  An informational call for interested applicants will be held in early October 2011 (exact date TBD).


New Medicaid Resource Available from The ARC

The ARC has announced a new resource that they developed with grant funding from the US Department of Health and Human Services Administration on Developmental Disabilities.  It is called the Medicaid Reference Desk and is designed to help people with intellectual and developmental disabilities and their families navigate the complexities of benefits, services, and supports.  Click here to access the Medicaid Reference Desk:  http://www.thearc.org/page.aspx?pid=2462


Nonfatal TBI in Persons Younger Than 19 Years

From 2001 to 2009, the number of annual TBI-related ED visits increased significantly, from 153,375 to 248,418, with the highest rates among males aged 10--19 years. By increasing awareness of TBI risks from sports and recreation, employing proper technique and protective equipment, and quickly responding to injuries, the incidence, severity, and long-term negative health effects of TBIs among children and adolescents can be reduced. Here is a link to the statistics:  http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6039a1.htm?s_cid=mm6039a1_e&source=govdelivery

To promote the prevention of, recognition of, and appropriate responses to TBI, CDC has developed the Heads Up initiative, a program that provides concussion and mild TBI education to specific audiences such as health-care providers, coaches, athletic trainers, school nurses, teachers, counselors, parents, and student athletes. The newest addition to this initiative is Heads Up to Clinicians: Addressing Concussion in Sports Among Kids and Teens, an online course for health-care professionals that was developed with support from the CDC Foundation and the National Football League.* This course, which offers free continuing education credits, addresses the appropriate diagnosis, management, and referral of TBI, and education about TBI that is critical for helping young athletes with concussion achieve optimal recovery and reduce or avoid significant sequelae.  Here is a link to this resource:  http://www.cdc.gov/concussion/

As DD nurses, we know the impact that a significant TBI can have on the life of a child or adolescent.  Because advocacy and education are missions of DDNA, let's look for opportunities to promote safety when children and teens are involved in sports and recreational activities . . . and remember that persons with DD may need reminders to stay safe while recreating, e.g., wearing a helmet while bike riding.


Responsive Neurostimulation for Refractive Partial Epilepsy

The American Academy of Neurology published an article in its journal, Neurology, that discusses use of the responsive cortical stimulator (otherwise known as the responsive neurostimulator or RNS) in the treatment of adults with partial epilepsy whose seizures did not respond to medications. The advantage of RNS is that the treatment is specific to the person. The system senses and records each patient’s abnormal seizure activity and then provides stimulation to stop the seizures. Given the successful results of the trial, RNS provides a new treatment option for adults with medically intractable partial epilepsy. 

To read more about this study in Neurology, go to:  http://www.neurology.org/content/77/13/e79.full.pdf


Preparing Individuals with ASD for Adulthood

The Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri has a website that is designed to families, self-advocates, teachers, health care providers and other professionals an introduction to the process of planning for the transition from adolescence to adulthood. It is also meant to provide resources and options to consider for the future.

The resources provided here address the following:

  • General guidance about the process of planning for the transition from adolescence to adulthood
  • How youth can be involved in the transition planning process
  • Key contacts to make during the transition process
  • A roadmap of resources in the areas of community living, health and safety, emergency preparedness, education and training, employment and adult services and benefits planning
To access this website, go to: www.asdtransition.missouri.edu


October is National Down Syndrome Month

According to the National Down Syndrome Society, about 400,000 people in the United States have Down Syndrome.  As DD nurses, we provide care and services to many of these people.  This month is an excellent time help raise awareness of Down syndrome and to make sure that we are up-to-date on the special health care needs that can be associated with Down syndrome. The resource page of the DDNA website has many resources related to Down syndrome for members.  If you are logged in to the website with your username and password, you can go directly to these resources on our website:  http://ddna.org/pages/resources#Down%20Syndrome

If you know of other Down syndrome resources from which you think your fellow DDNA members could learn or benefit, please email the links to these resources to: contact@ddna.org


DSM Accurate in Diagnosing ASD in Children with Down Syndrome

New findings from a 16-year study at Kennedy Krieger Institute have confirmed that the Diagnostic and Statistic Manual of Mental Disorders (DSM) is useful in the accurate diagnosis of autism spectrum disorders (ASD) in children with Down syndrome.  For more information about this research, go to:  http://www.kennedykrieger.org/overview/news/new-findings-validate-accuracy-autism-diagnosis-children-down-syndrome


Maternal Cold/Flu in Pregnancy Not Linked to CP

Despite concerns that a mother's infections during pregnancy may raise her baby's risk of cerebral palsy, common colds and stomach flu were not tied to the birth defect in a new study.  Other more serious infections, and factors like a woman's history of miscarriage or family history of cerebral palsy, were associated with increased risk to babies, Dr. Michael E. O'Callaghan of the University of Adelaide, Australia, one of the study authors told Reuters Health. "There's an increased chance but it's still low."

For more information, go to the Reuters Health article on MedlinePlus:  http://www.nlm.nih.gov/medlineplus/news/fullstory_117035.html


Nursing, History, and Health Care

If you are interested in the history of the nursing profession and the provision of nursing care, you will find this website developed by Penn State University very interesting.  It provides access to information that can be used by practitioners, researchers, educators, policymakers and consumers of health care to gain perspective on health care issues in general and nursing in particular by developing the historical context in which nursing developed as a profession and an occupation and also to increase awareness of the nursing profession’s contributions to health care in the United States. Many thanks to our colleague, Dr. Rick Rader, who has a special interest in medical anthropology for bringing this website to our attention.  Here is a link to the site:  http://www.nursing.upenn.edu/nhhc/Pages/Welcome.aspx


Research Hope for Potential Treatment For CP

Scientists at Case Western Reserve University School of Medicine found a way to rapidly produce pure populations of cells that grow into the protective myelin coating on nerves in mice. Their process opens a door to research and potential treatments for multiple sclerosis, cerebral palsy and other demyelinating diseases afflicting millions of people worldwide.

The findings were published in the online issue of Nature Methods, Sunday, Sept. 25, at 1 p.m. EST.

"The mouse cells that we utilized, which are pluripotent epiblast stem cells, can make any cell type in body," Paul Tesar, an assistant professor of genetics at Case Western Reserve and senior author of the study, explained. "So our goal was to devise precise methods to specifically turn them into pure populations of myelinating cells, called oligodendrocyte progenitor cells, or OPCs."

Their success holds promise for basic research and beyond.

"The ability of these methods to produce functional cells that restore myelin in diseased mice provides a solid framework for the ability to produce analogous human cells for use in the clinic," said Robert H. Miller, vice dean for research at the school of medicine and an author of the paper.

Tesar worked with CWRU School of Medicine researchers Fadi J. Najm, Shreya Nayak, and Peter C. Scacheri, from the department of genetics; Anita Zaremba, Andrew V. Caprariello and Miller, from the department of neurosciences; and with Eric. C. Freundt, now at the University of Tampa.

Myelin protects nerve axons and provides insulation needed for signals to pass along nerves intact. Loss of the coating results in damage to nerves and diminished signal-carrying capacity, which can be expressed outwardly in symptoms such as loss of coordination and cognitive function.

Scientists believe that manipulating a patient's own OPCs or transplanting OPCs could be a way to restore myelin.

And, they have long known that pluripotent stem cells have the potential to differentiate into OPCs. But, efforts to push stem cells in that direction have resulted in a mix of cell types, unsuitable for studying the developmental process that produces myelin, or to be used in therapies.

Tesar and colleagues are now able to direct mouse stem cells into oligodendrocyte progenitor cells in just 10 days. The team's success relied upon guiding the cells through specific stages that match those that occur during normal embryonic development.

First, stem cells in a petri dish are treated with molecules to direct them to become the most primitive cells in the nervous system. These cells then organize into structures called neural rosettes reminiscent of the developing brain and spinal cord.

To produce OPCs, the neural rosettes are then treated with a defined set of signaling proteins previously known to be important for generation of OPCs in the developing spinal cord.

After this 10 day protocol, the researchers were able to maintain the OPCs in the lab for more than a month by growing them on a specific protein surface called laminin and adding growth factors associated with OPC development.

The OPCs were nearly homogenous and could be multiplied to obtain more than a trillion cells.

The OPCs were treated with thyroid hormone, which is key to regulating the transition of the OPCs to oligodendrocytes. The result was the OPCs stopped proliferating and turned into oligodendrocytes within four days.

Testing on nerves lacking myelin, both on the lab bench and in diseased mouse models, showed the OPCs derived from the process flourished into oligodendrocytes and restored normal myelin within days, demonstrating their potential use in therapeutic transplants.

Because they are able to produce considerable numbers of OPCs – a capability that up until now has been lacking - the researchers have created a platform for discovering modulators of oligodendrocyte differentiation and myelination. This may be useful for developing drugs to turn a patient's own cells into myelinating cells to counter disease.

###

The National Institutes of Health, CWRU School of Medicine, the New York Stem Cell Foundation, the Myelin Repair Foundation, the National Center for Regenerative Medicine, and the Case Comprehensive Cancer Center funded the research.


Untreated ADHD Adds to Burden of Autism

The symptoms of attention deficit and hyperactivity disorder (ADHD) create significant problems for over half of all children with autism and may be both under-recognized and under-treated by pediatricians. These findings—from Autism Speaks’ Autism Treatment Network (ATN)—were presented Sunday at The Society for Developmental and Behavioral Pediatrics annual conference, in San Antonio, Texas.

Lead researchers Parul Vora, M.D., of Nationwide Children's Hospital, in Columbus, Ohio, and Darryn Sikora, Ph.D., of Oregon Health Sciences University, in Portland, included information on over 2,000 children seen at 14 of the ATN’s 17 autism treatment centers across North America.

“Over half of these children had symptoms of inattention, over half had hyperactivity, and over a third had symptoms that were in the high range on both of these scales,” comments ATN medical director Dan Coury, M.D., one of the study’s co-authors.

To gauge the impact of these symptoms on the affected children, the researchers analyzed parent responses to standardized quality of life and daily function questionnaires. The results showed that children with ASD compounded by ADHD symptoms scored significantly lower in all areas of life quality (social, communication, etc.) and functioning (school, physical, emotional, etc.) compared to children with ASD alone.

Yet only one in ten (11%) of these children and adolescents were receiving medical treatment for their ADHD when they came to an ATN center, the researchers found. A number of stimulant medications have proven benefit for children with ADHD alone, Dr. Coury notes.  “As such, parents of a child with both autism and ADHD symptoms may want to consider a trial of of medication to judge whether it is benefit to their child,” he says.

The decision to use medications to treat challenging behaviors is not an easy one, Dr. Coury emphasizes, and should include consideration of a family’s values and goals for their child. For guidance, parents may find benefit in the ATN’s new medical decision aid, Should My Child Take Medication for Challenging Behavior? available for free download on the ATN’s Tools You Can Use page : http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use/medication-guide

This information is from the Autism Speaks website:  http://www.autismspeaks.org/



Parents, Siblings and People with Down Syndrome Report Positive Experiences

Three related surveys led by a physician at Children's Hospital Boston suggest that the experience of Down syndrome is a positive one for most parents, siblings and people with Down syndrome themselves.  The results, published in three reports in the October issue of the American Journal of Medical Genetics, may serve to inform expectant parents and clinicians providing prenatal care.

"New prenatal tests for Down syndrome are set to come out as early as the end of this year," says Brian Skotko, MD, MPP, a clinical fellow in genetics at Children's Hospital Boston. "Many more women will then learn about the diagnosis prenatally and will need to grapple with very personal pregnancy options. In previous surveys, mothers have reported receiving inaccurate, incomplete and occasionally offensive information about Down syndrome from their healthcare providers."

Skotko and collaborators Susan Levine, MA, CSW, of Family Resource Associates (Shrewsbury, NJ) and Richard Goldstein, MD, of the Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, sent surveys to 4,924 households on the mailing lists of six nonprofit Down syndrome organizations around the country.  The surveys asked respondents to rate their agreement with statements on a scale of 1-7, and also included some open-ended questions.

The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent. Its findings:

  • 99 percent of parent/guardians said they loved their child with Down syndrome
  • 79 percent felt their outlook on life was more positive because of their child
  • 5 percent felt embarrassed by their child
  • 4 percent regretted having their child.

The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

  • 94 percent expressed feelings of pride about their sibling
  • 7 percent felt embarrassed by their sibling
  • 4 percent would "trade their sibling in" for another
  • 88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

  • 97 percent said they loved their sibling
  • 90 percent felt their friends are comfortable around their sibling

The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:

  • 99 percent said they were happy with their lives
  • 97 percent liked who they are
  • 96 percent liked how they look
  • 86 percent indicated they could make friends easily
  • 4 percent expressed sadness about their life.  

"As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome," says co-author Levine. "And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable."

In open-ended questions, parents reported learning a variety of life lessons – the top five being: personal self-growth, patience, acceptance/respect, love, joy.  Asked what they would tell other prospective parents of a child with Down syndrome, the top responses fell into these categories:

  • You will experience joy/rewards
  • There will be struggles/challenges
  • You will experience love
  • Important to identify good support group/resources
  • Children with Down syndrome are more alike than different from typically developing children.

Siblings, asked what they would tell prospective parents having a child with Down syndrome, most often conveyed that the experience would be joyful and rewarding, though many also said there would be challenging moments.  

Respondents with Down syndrome most often gave these kinds of messages for parents:

  • Love your baby/your baby loves you
  • Life is good/happy to be alive/positive
  • Don't worry/it's okay.

Their main messages for doctors were:

  • Life is good/I'm happy to be alive/positive
  • Please take care of our medical needs
  • Please give information to parents about school options for people with Down syndrome
  • Value us/we're okay.

The researchers acknowledge that the surveys are subject to selection bias, since members of nonprofit Down syndrome groups may not be representative of the general population of Down syndrome families; respondents were largely white and middle to upper class. There is currently no population-based registry for people with Down syndrome.

"Prenatal decisions about Down syndrome present profound and deeply personal challenges to expectant parents," says co-author Goldstein. "What has been missing has been the perspective of those living with Down syndrome. This study now provides the largest and most comprehensive portrait of life with Down syndrome to date."  

The studies were supported by grants from the Tim White Foundation, the Fred Lovejoy House-staff Research and Education Fund, and the Joel and Barbara Alpert Endowment for the Children of the City.

Children's Hospital Boston is home to the world's largest research enterprise based at a pediatric medical center, where its discoveries have benefited both children and adults since 1869. More than 1,100 scientists, including nine members of the National Academy of Sciences, 11 members of the Institute of Medicine and nine members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396 bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary pediatric teaching affiliate of Harvard Medical School. For more information about research and clinical innovation at Children's, visit: http://vectorblog.org.





Oral Care for Special Needs Children and Adolescents

AADMD sent this information on to DDNA about the National Maternal and Child Oral Health Resource Center (OHRC), which has two new resources developed to stimulate thinking about providing oral health care for children with special health care needs.

Oral Health Services for Children and Adolescents with Special Health Care Needs: A Resource Guide, 2nd edition, provides annotated lists of journal articles, materials, and organizations that may serve as resources. Topics include continuing education for professionals, financing of care, disease prevention and early intervention strategies, public education, and state and national data and programs. The guide is available at http://www.mchoralhealth.org/PDFs/SHCNResGuide.pdf.

Single or multiple print copies of the resource guide are available at no charge from OHRC and can be ordered at http://www.mchoralhealth.org/publications.html. Please allow 4 weeks to process your order.

Resource Highlights: Focus on Children with Special Health Care Needs (electronic guide) provides a short list of high-quality journal articles, materials, and websites focusing on children with special health care needs (CSHCN). The tool also offers automated PubMed and OHRC library search options for finding additional resources. Resource Highlights is available at http://www.mchoralhealth.org/highlights/index.html.

 These resources were produced with support from the Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services, and the Office of Head Start, Administration of Children and Families, U.S. Department of Health and Human Services.  


Fire Safety for Persons with IDD

October 9-15 is National Fire Safety Week!  It is important that people with I/DD learn what to do in case of fire.  The website of the National Fire Prevention Association provides a curriculum that can be used to teach people with IDD about fire safety.  So check your smoke detector batteries and make sure everyone knows what to do when a smoke detector goes off.  Here is the link to the curriculum:
Click here


Career Opportunity for Highly Qualified DD Nurse

Family Residences and Essential Enterprises Inc. is a large, multi-service, not for profit organization that is seeking a highly qualified nursing healthcare professional who is experienced with Office for People With Developmental Disabilities (OPWDD) regulations, to join their leadership team. They provide an array of supports and services for over 3,000 persons with and without disabilities across Nassau, Suffolk, and Queens, New York. They offer competitive pay and outstanding benefits. Qualified applicants are encouraged to apply immediately. For complete information click on the CLASSIFIEDS page of the DDNA website.


Brain Scans Show Distinct Traits in Kids With Autism

Researchers at Stanford University used scanning technology to example the brains of older children with autism compared to those of children without autism. They found physical differences in the brains, and were able to discriminate between typically developing and autistic children with 92 percent accuracy.  For more information about this study, go to: http://www.nlm.nih.gov/medlineplus/news/fullstory_116087.html



Many Autistic Teens Use School Mental Health-Health Services

More than 46 percent of the teens with autism used a mental health service in the past year for behavioral issues and other conditions, such as anxiety and depression. Of those, 49 percent used mental health services at their school. For more information about what happens to these teens when they leave high school, go to:  http://www.nlm.nih.gov/medlineplus/news/fullstory_116130.html


Online Bachelors Degree for Students with Autism

Do you know an individual with autism who is very interested in computers?  If so, the Sage Colleges and Excelsior College have joined forces to develop a new online bachelor’s degree designed for people diagnosed with autism spectrum disorders or other learning disabilities, to expand their career options and enjoy the benefits of college education. The program leads to a B.A. in Liberal Studies with an emphasis in Computer Science and, like traditional bachelor’s degrees, is comprised of 120 credits. However, the program content and delivery accommodates students’ learning styles and abilities to maximize their chances for success.

The online format allows for accommodations that can make college less stressful for students with particular social and other needs. These accommodations include:

  • Small class sizes: no more than 15 students per class
  • Content delivery in multiple formats to benefit a variety of learning styles
  • Flexibility in assessment and participation modalities
  • Specialized training for instructors teaching in the program
  • 1-credit lab courses in practical topics such as online study skills, personal finance, conversation and interpersonal communication, career preparation, and interviewing skills
  • One-on-one support from a Board Certified Behavior Analyst (BCBA) to help each student navigate all facets of the college experience, including administrative aspects, technology, academic demands, and social needs
For more information about this program, go to: http://www.sage.edu/newsevents/news/?story_id=260321


IOM Concludes Vaccines Do Not Cause Autism

Press release today from the Institute of Medicine: An analysis of more than 1,000 research articles concluded that few health problems are caused by or clearly associated with vaccines.  A committee of experts convened by the Institute of Medicine to review the scientific literature on possible adverse effects of vaccines found convincing evidence of 14 health outcomes -- including seizures, inflammation of the brain, and fainting -- that can be caused by certain vaccines, although these outcomes occur rarely.  It also found indicative though less clear data on associations between specific vaccines and four other effects, such as allergic reactions and temporary joint pain.  In addition, the evidence shows there are no links between immunization and some serious conditions that have raised concerns, including Type 1 diabetes and autism.  The data were inadequate to reach conclusions about other suggested adverse effects.  Click here to read the entire report:
http://books.nap.edu/openbook.php?record_id=13164

 


Advocate: Include Persons with IDD in National Alzheimer's Project!

As part of the National Alzheimer’s Project Act, the federal government is creating a comprehensive strategy to overcome the Alzheimer’s disease crisis. People with I/DD can develop Alzheimer's disease -- some have a greater chance of developing it than the general population, e.g., persons with Down Syndrome. It is important that people with I/DD be included in this national strategy.  Your insights, opinions and suggestions on how best to include people with I/DD in this comprehensive strategy matter. You can submit them through the website of the The Alzheimer’s Association, which will then submit them to the U.S. Department of Health and Human Services.  Here is the link to the form:  http://napa.alz.org/share-your-feedback


Free Alzheimer's Assessment Tool in Aging and I/DD Forum

Lou Ellen Ruocco, a Charter Member of DDNA, has donated the Ruocco Assessment Tool to DDNA.  For information on how to download this free tool, go to the Forum page of this website, scroll down to the forum on Aging with I/DD, and read Lou Ellen's post.  This tool, which is posted on the DDNA Resource page, can be used by support personnel and family members to gather specific information about individuals with I/DD that could indicate the onset or presence of Alzheimer's disease.  There is also a physical assessment section to be completed by the nurse and shared with the primary care provider.


Home Parenteral and Enteral Nutrition

Individuals with I/DD may require home parenteral or enteral nutrition.  The Oley Foundation was founded in 1983 by Lyn Howard, MD and her patient, Clarence "Oley" Oldenburg, the Oley Foundation is a national, independent, non-profit 501(c)(3) organization that provides information and psycho-social support to consumers of home parenteral (IV) and enteral (Tube-fed) nutrition (homePEN), helping them live fuller, richer lives. The Foundation also serves as a resource for consumer's families, homePEN clinicians and industry representatives, and other interested parties. Programs are directed by the staff and guidance is provided by a board of dedicated homePEN professionals and patients.

Oley Programs:

  • LifelineLetter: a bi-monthly newsletter with articles about medical advances and personal experiences, written for homePEN consumers,

  • Regional Coordinator Network: a national grassroots network of 50+ volunteers — all homePEN consumers or caregivers — who run support groups and provide outreachand education at the local level

  • Nationaland Regional Conferences: opportunities for homePEN consumers, clinicians, providers and industry representatives to share support and information

  • Information Clearinghouse: a resource designed to answer questions about homePEN through a toll-free hotline,Web site, online education program, video/dvd library and links to other organizations.  

  • Consumer Networking: online chat forum  and toll-free calls to experienced homePEN consumers and caregivers

  • Equipment/Supply Exchange: a program that provides patients with free supplies and equipment donated by members who no longer need them.

Don’t miss our other popular web pages that provide tips for traveling and swimming, opportunities to participate in research , and helpful printed materials (for a complete list see the “Resources” drop-down menu).

If you would like to receive the newsletter and other timely updates from Oley, join today!  It’s free of charge for patients and their families. It's also free for clinicians and industry members who choose to receive the newsletter via email.



Obesity and Disability

"Obesity and Disability,” a fact sheet prepared by the American Association on Health and Disability, highlights the following:
-20% of children age 10 through 17 with special health care needs are obese versus 15% of children without special health care needs.
-Obesity rates for adults with disabilities are 58% higher than for adults without disabilities.
-Almost 20% of overweight adults and roughly 30% of obese adults also have a disability.
-Roughly 36% of people with disabilities are also obese
- Children and adults with mobility limitations and intellectual or learning disabilities are at greatest risk for obesity.
This fact sheet includes information on the link between disability and obesity, why individuals with disabilities are more likely to be overweight or obese, the impact of obesity on medical costs, the Surgeon General’s Vision for a Fit and Healthy Nation, and resources for healthy living and healthy weight.


The Affordable Health Care Act

The Affordable Care Act expands access to care, ends abuses of insurers, and makes health care more affordable.  The law helps those with pre-existing health conditions, people who are under age 26 and without health insurance, the most vulnerable in our society and those who are currently insured.  To learn more about the health care law and how to access health care benefits in your community, click on the following link to access a .ppt presentation that outlines the highlights of this act: http://www.hhs.gov/partnerships/resources/aca101faithcommunities.pdf


Improving Access to Oral Health Care for Vulnerable and Underserved Populations

Good health requires good oral health, yet millions of Americans lack access to basic oral health care. Various factors create barriers, preventing access to care for vulnerable and underserved populations, such as children and Medicaid beneficiaries. The Health Resources and Services Administration and the California HealthCare Foundation asked the IOM and the National Research Council to assess the current oral health care system, to develop a vision for how to improve oral health care for these populations, and to recommend ways to achieve this vision.

Access to oral health care across the life cycle is critical to overall health, and it will take flexibility and ingenuity among multiple stakeholders—including government leaders, oral health professionals, and others—to make this access available. To improve provider participation in public programs, states should increase Medicaid and Children’s Health Insurance Program reimbursement rates. With proper training, nondental health care professionals can acquire the skills to perform oral disease screenings and provide other preventive services. Dental schools should expand opportunities for dental students to care for patients with complex oral health care needs in community-based settings in order to improve the students’ comfort levels in caring for vulnerable and underserved populations.  Finally, states should examine and amend state practice laws to allow healthcare professionals to practice to their highest level of competence. The IOM’s recommendations provide a roadmap for the important and necessary next steps to improve access to oral health care, reduce oral health disparities, and improve the oral health of the nation’s vulnerable and underserved populations.

The Institute of Medicine Committee on Oral Health Access to Services will hold a dissemination workshop for its final report, "Improving Access to Oral Health Care for Vulnerable and Underserved Populations," on August 4, 2011. 


The workshop will be held in San Francisco in conjunction with the California HealthCare Foundation, a co-sponsor of the report. Scheduled presentations will focus on the recommendations of the final report in the context of the California health care system.

The link to the registration page as well as the draft agenda can be found on the right-hand side of this page.

Thursday, August 4, 2011
9:00 AM - 5:00 PM
Sir Francis Drake Hotel
Renaissance Room
450 Powell Street
San Francisco, CA 94102

While there is no charge to attend this workshop, attendees must register. The workshop will not be webcast, but audio of the presentations will be available after the event at:  http://www.iom.edu/Activities/HealthServices/OralHealthAccess/2011-AUG-04.aspx




Free Webinar on July 25: A Hospital Program for Adults with I/DD: Improving the Patient Experience

Adult patients with I/DD face unique challenges when hospitalized. They have longer lengths of stay and more adverse events than other patients. Many report feeling vulnerable, confused, fearful of unfamiliar people and procedures, and unsure of how to communicate needs and preferences to hospital staff. These feelings may lead to unwillingness to cooperate with medical care, which can compromise patient care and safety. Many providers lack the training and resources needed to calm these patients, communicate effectively with them, help them cope, and coordinate their care, and understand their disabilities which can lead to a number of complications within the hospital setting. This presentation will discuss a program at Rush University Medical Center that can improve the hospital experience for those with I/DD. It includes a pre-hospital tour program, a telephone hot line for special needs accommodations, procedure specific information booklets, an addendum to the nursing admission form, and enhanced staff education.  Attendees will be able to identify hospital services that may improve the hospital experience and outcomes for adults with I/DD. The results of the SurveyMonkey taken by the attendees prior to the Webinar will be reviewed and discussed. This presentation is appropriate for anyone who cares about  those with I/DD and their well being.

Please complete this health survey before the Webinar begins:  https://www.surveymonkey.com/s/QYW6WHP

The results of the SurveyMonkey taken by the attendees prior to the Webinar will be reviewed and discussed. This presentation is appropriate for anyone who cares about  those with I/DD and their well being.

Space is limited.
Reserve your Webinar seat now at:  https://www3.gotomeeting.com/register/700129742

Seth Keller, MD AADMD, Sarah Ailey, PhD, Rush University, and David O'Hara, Weshchester Institute on Human Development will be leading the discussion.

Title:    A Hospital Program for Adults with I/DD: Improving the patient experience
Date:    Monday, July 25, 2011
Time:    7:00 PM - 9:30 PM EDT

After registering you will receive a confirmation email containing information about joining the Webinar.
System Requirements
PC-based attendees
Required: Windows® 7, Vista, XP or 2003 Server

Macintosh®-based attendees
Required: Mac OS® X 10.5 or newer


Therapies for Children with Autism Spectrum Disorders

The US Department of Health and Human Resources Agency for Healthcare Research and Quality released a Consumer Guide on Therapies for Children with Autism Spectrum Disorders:  A Review of the Research for Parents and Caregivers on June 30, 2011. It can be found at: http://effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productID=709

The information in this guide comes from the report Comparative Effectiveness of Therapies for Children With Autism Spectrum Disorders. It was produced by the Vanderbilt Evidence-based Practice Center with funds from the Agency for Healthcare Research and Quality (AHRQ). For a copy of the report, or for more information about AHRQ and the Effective Health Care Program, go to http://www.effectivehealthcare.ahrq.gov/autism1.cfm.

This summary guide was prepared by the John M. Eisenberg Center for Clinical Decisions and Communications Science at Baylor College of Medicine, Houston, TX. It was reviewed by parents and caregivers of children with ASD.


The ARC's Report on Family and Individual Needs for Disability Supports

On June 11, the ARC published a summary of key findings and a call to action based a "The Family and Individual Needs for Disability Supports" (FINDS) survey that was conducted online from July 22, 2010 to October 31, 2010. The study focused on employment, education, and the provision of supports and services for people with I/DD and their families.The study also lists the legislative and regulatory actions that they believe can have a significant positive impact on the lives of people with I/DD.  To read this document, go to:  http://www.thearc.org/document.doc?id=3140


Health Inequalities for Women with Disabilities: Poster Presentation Opportunity at APA Conference

The American Psychological Association invites submissions of proposals for an interactive, interdisciplinary conference, “Inequity to Equity: Promoting Health and Wellness of Women with Disabilities.”  They seek proposals for poster presentations, papers, and symposia regarding women with disabilities that address the following topics: Health Disparities and Equity; Access to Healthcare; Health Promotion and Disease Prevention; Reproductive Health and Sexual Health; Psychosocial Health; Interpersonal Violence and Violence Prevention; Disability across the Lifespan; and Legal Guidance and Public Policy.  The conference is cosponsored with the Howard University Women’s Health Institute and Gallaudet University and will be held at the Kellogg Conference Hotel at Gallaudet University in Washington, DC on October 17 - 18, 2011. By promoting the exchange of knowledge and information among psychologists, other health care providers, researchers, educators, policymakers, women with disabilities and advocates, this conference aims to foster an integrated health care agenda that will improve health outcomes for women with disabilities.  Call for Proposals deadline is July 8, 2011.


2011 Conference Photos Up on the Conference Page

Many thanks to Glenda Tate from our New Mexico Chapter for taking so many great pictures at the conference.  To view the conference photos, go to the Conference page on the website and click on "2011 Conference in Hartford, CT."


New Forums for DDNA Members

DDNA has completely "revamped" our forum page.  You will notice a list of suggested topics at the top of the page.  The topics that are in listed in green already have moderators.  We are delighted to have top national nursing experts in the areas of aging, abuse and neglect, psychiatric/behavioral issues, and education for I/DD nurses who have agreed to moderate the forums on these topics.  You can read the welcomes from these moderators in their forums. If you see a suggested topic that does not have a moderator, and you would like to moderate that forum, please contact DDNA by email or phone.  Moderating a forum is not difficult.  It just requires you to check your forum a few times a week to make sure that people who post a message receive a response and that posts are appropriate.  Please note that only active DDNA members may moderate a forum or post questions or responses in the forums.  Forums are a great way for members to ask questions and get advice from other I/DD nurses, to share experiences, and to seek resources.  We do ask that you read "How to Use the Forums" at the top of the forum page before you begin posting.  If you are interested in an I/DD nursing topic, and you don't see it in the list at the topic, give us a call.


2012 Annual Education Conference – Plans Already Underway!

Wow!  It seems like the 2011 Annual Education Conference was just last week . . . and already we have begun planning the 2012 Conference!  For those of you who like to schedule ahead – you can mark your calendars now for the Preconference on May 4, 2012 and the Conference on May 5-7, 2012.  We will be at the beautiful Rosen Plaza Hotel on International Drive in Orlando, FL.


Thanks to All for a Great 2011 Annual Education Conference

A big thank you to all attendees, speakers, sponsors, exhibitors, poster presenters, and volunteers for your participation in helping to create a great annual education conference.  We appreciate the overwhelmingly positive feedback from attendees and some great suggestions for next year’s conference.  For those of us “jabberers” present at Tuesday morning’s session with Tracy Thresher and Harvey Lavoy, we can only agree with Tracy’s final words to us “You are by far the best group we have met.”


Hotel Rooms at Conference Still Available at Discounted Rate

The Marriott Hotel in Hartford still has discounted hotel rooms for people who are planning to attend the DDNA Education Conference.  If you have been told by the hotel that there are no more discounted hotel room available, this information was not accurate. They have now changed their online hotel room reservation system to default to the type of rooms (either king or double) that they have available on the nights you are requesting.  They have asked us to inform you that if you are making hotel reservations, especially online, that you can request a double room if a king is not available, or a king if a double is not available. They have also extended the hotel registration cut-off date until Monday, April 25th, as a courtesy to DDNA members.  If you have a problem registering for your hotel room, please feel free to contact the DDNA office, and we will be glad to help you.


Free Seminar on Dementia and Care in Aging Adults with IDD

Adults with IDD are living longer than in the past. Functional and cognitive decline are very common social and health consequence of aging, but they are often poorly characterized and managed by health care providers and support staff. This Webinar will present specific information that will help to clarify these issues as well as to present information on the National Task Group on Intellectual Disabilities and Dementia Practices Project (NTG). This AADMD and Rehabilitation Research and Training Center on Aging with Developmental Disabilities: Lifespan Health and Function sponsored event is free and there will be a Q & A session following the talk. The session is taking place on Wednesday, April 27, 2011 from 7 PM to 8 PM.

You can register for the webinar by clicking on the link below.  Once registered, you will receive an email confirming your registration with the information you need to join the webinar.

https://www3.gotomeeting.com/register/338317350


April is Autism Awareness Month

As DDNA nurses, we recognize the need for autism awareness, and want to extend our encouragement and support to individuals and families who live with the effects of autism on a daily basis.  We also recongize the importance of ongoing research on all aspects of autism.  Below is a link to a letter from Thomas Insel, The Director of the National Institute of Mental Health, that provides an update on recent autism research, including links to the studies, and the Department of Health's report to Congress on progress made under the Combating Autism Act of 2006.  The letter also contains the Interagency Autism Coordinating Committee's annual "Summary of Advances in Autism Spectrum Disorder (ASD) Research" and posted the annual update of its "Strategic Plan for ASD Research."

To read this letter, you may go to:  http://www.nimh.nih.gov/about/director/2011/highlights-in-autism-progress-for-april-autism-awareness-month.shtml


New "Health Passport" Advocacy Tool Available for Free Download

Dr. Elizabeth Perkins, who is a member of DDNA, has created an excellent tool that nurses can use to help ensure that individuals received appropriate health care and services.  It is a simple to understand form that includes information relevant to the individual's particular needs, which could make the difference between a successful hospital/clinical visit . . . or a difficult experience for both the individual and the health care team.  You may download the Health Passport from this news item, and we have also added the link to the Health Advocacy section of our Resource page. 

The link to the Health Passport is: http://flfcic.fmhi.usf.edu/projects/health.htm

Dr. Perkins would be delighted to hear any feedback and comments you have about using this form.  She can be reached at:

Elizabeth A. Perkins, Ph.D., RNMH.
Florida Center for Inclusive Communities
Department of Child and Family Studies
College of Behavioral and Community Sciences
University of South Florida
13301 Bruce B. Downs Blvd, MHC 2113A
Tampa, FL, 33612-3807
Tel :- (813) 974-7076
Fax:- (813) 974-6115
Email: eperkins@mail.usf.edu

 



Early Bird Conference Discount Deadline Fast Approaching

Save $45 on the DDNA Annual Conference fee by registering before midnight on April 8th.  The "early bird" gets the discount!


Discounted Annual Conference Hotel Rooms Available

Discounted hotel rooms are still available at the Hartford Marriott for the DDNA Annual Conference.  If you called hotel reservations and were told that there were no more rooms for DDNA, or that the rooms were full price at $289/night -- that was an ERROR ON THE PART OF THE RESERVATION CLERK.  Rooms are still available at just $135/night.


Spring Newsletter Now Available

The DDNA Spring Newsletter is now up on the Newsletter page of the website, along with directions on how to access and use our new full-color "flipping" version of the newsletter. This new newsletter does require that you have Flash installed on your computer. If you have trouble viewing the new newsletter, please call DDNA during business hours. We will help you download Flash, which is free and easy to do. We also have black and white text versions of the newsletter available for easy printing. Remember to log in with your username and password to view the newsletter. We hope you enjoy the new format!


March 23 Free Webinar on Health Care Transition

On March 23 from 2-3 PM there is a free webinar that presents the findings from a January 2011 report, "Health Care Transition for Youth with Special Health Care Needs." It will discuss the report's analysis of national and state transition outcome data from the 2005-2006 National Survey of Children and Youth with Special Health Care Needs. The webinar will be presented by the authors of the study, Peggy McManus and Katherine Rogers of the National Alliance to Advance Adolescent Health. Space is limited and reservations are required. If you are interested in participating, email mawillis@ddna.org for registration details.


March is Developmental Disabilities Awareness Month

To all members of DDNA, thank you for all that you do on a daily basis as nurses to provide care and to advocate for adequate health services for your clients. It is the right of people with developmental disabilities not only to live, learn, and work, but to live, learn and work in optimal health. We know that every month is Developmental Disabilities Awareness Month for DD nurses, who are essential members of the health care team for people with developmental disabilities. Because DD nurses teach, assess, refer, intervene, and provide care, there are many individuals with DD who are living, learning, and working in their communities in optimal health. To people who live with developmental disabilities, the nurses of DDNA value your right to live in health and will do all that they can with the resources that they have to promote your right to a healthy life.


HBV Risks from Shared Blood Glucose Monitoring Equipment

If you have individuals for whom blood glucose testing is being done using shared blood glucose meters, here is some important information from the CDC in their publication "Notes from the Field: Deaths from Acute Hepatitis B Virus Infection Associated with Assisted Blood Glucose Monitoring in an Assisted-Living Facility--North Carolina, August-October 2010," in the February 18 issue of MMWR. The first two sentences and the second paragraph are reprinted below.

"Sharing of blood glucose monitoring equipment in assisted-living facilities has resulted in at least 16 outbreaks of hepatitis B virus (HBV) infection in the United States since 2004. On October 12, 2010, the North Carolina Division of Public Health (NCDPH) and the Wayne County Health Department were notified by a local hospital of four residents of a single assisted-living facility with suspected acute HBV infection. The investigation identified unsafe practices, including sharing of reusable fingerstick lancing devices approved for single patient use only and shared use of blood glucose meters without cleaning and disinfection between patients. Of 87 persons who had resided in the facility during the study period, 47 were excluded from analysis because of HBV immunity (20 persons), chronic infection (one person), or unknown HBV status (26 persons). Of the remaining 40, eight met the case definition. Of these, all were hospitalized, and six died from hepatitis complications. All eight were among the 15 residents whom facility staff had assisted with blood glucose monitoring; none of 25 residents who had not been assisted with blood glucose monitoring were infected."

To access the full article, go to: http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6006a5.htm


National Council on Disabilities Report Released February 15th, 2011

The National Council on Disabilities (NCD) has released "Rising Expectations: The Developmental Disabilities Act Revisited." NCD conducted a year-long study of the effectiveness of programs to improve the lives of people with developmental disabilities, their civil and human rights, and their maximum potential through increased independence, productivity, and integration into the community. This report makes recommendations to address key issues for consideration when the Developmental Disabilities Act reauthorization process begins, and it was sent to President Obama and Congress. To read this document, go to: http://www.ncd.gov/newsroom/publications/2010/rising_expectations_02-15-11.html


Assess Individuals Given Botulinum Toxin for Swallowing Problems

DDNA's most recent newsletter included a press release from the National Institutes of Health regarding the use of botulinum toxin injections to reduce drooling in individuals with certain neurological conditions, including cerebral palsy in children. United Press International recently reported on several cases of swallowing difficulties necessitating feeding tubes that have occured among 3 children out of 20 children in a facility in Texas to whom injections of Dysport, a drug similar to Botox, were administered to decrease drooling. It has not been determined that Dysport caused these swallowing problems. According to the American Academy of Pediatrics, botulinum toxin injections have been used safely for years, but side effects, which usually go away quickly, can include rash, whole-body muscle soreness, difficulty in swallowing and weakness in the injected muscles. Monitoring the ability to swallow would be an appropriate nursing assessment for individuals who have been given a botulinum toxin injection for the purpose of decreasing drooling.


Participate in Research on Health Care Coordination

The University of Minnesota's Institute on Community Integration is conducting a research study on health care coordination for individuals with physical disabilities. This includes individuals with intellectual and developmental disabilities who also have physical disabilities. The researchers are looking for people who currently are or recently have been health care coordinators to participate in the study. Participants will be asked to respond to an on-line survey about health care coordination. The survey takes about 30 minutes. The participants will be asked to retake the survey two to four weeks later. Interested people may email carecoor@umn.edu for further information or call 612-626-7335.


Free IPads for Persons with Autism

The HollyRod Foundation is providing free IPads to individuals on the autism spectrum who are nonverbal or minimally verbal. Applications for the free IPad will be reviewed in the order that they are received. So if you have an individual you think could benefit from this opportunity, you would need to submit the application as soon as possible. The number of IPads available will be dependent on the donations the HollyRod Foundations receives to support this program. For more information about this program, go to: http://www.hollyrod.org/#/holiday-2010/4545650338


Emergency Preparedness for Persons with Disabilities and Special Needs

The American National Standards Institute (ANSI) Homeland Security Standards Panel released its Final Workshop Report on Emergency Preparedness for Persons with Disabilities and Special Needs in October 2010. If you would like to read this report, it is available on this website as a .pdf.

Click here to read a .pdf of this report:


Contact ADD to Provide Input on the Care of Persons with DD

Sharon Lewis, the new Commissioner of the Administration on Developmental Disabilities, is asking stakeholders, including DD professionals, to describe their vision of the future for people with DD. There are a number of ways in which you can lend your voice to this "Envisioning the Future" initiative. Please note that there is a December 6 deadline. For more information on providing input to the Administration on Developmental Disabilities, go to: http://www.envision2010.net/index.php


HBO Documentary on "Monica & David"

During the month of October, HBO is airing a documentary entitled "Monica & David," which chronicles the wedding and marriage of two young people who have Down syndrome. If you get HBO on your television, you may want to watch this film, which won the Tribeca Film Festival. Dates and times of broadcast vary so you will need to check your local HBO television schedule.


Northern Illinois Chapter of DDNA Hosts 10th Annual Conferece

The Northern Illinois DDNA Chapter's 10th annual state conference, "What's New In DD Nursing," will take place November 4th and 5th at Starved Rock Lodge in Utica, IL. Education to be presented at the conference will include FAS, Issues Facing DD Nursing in Illinois, Pharmacology, Update from National DDNA, High-Impact Health Information, and Bringing Man's Best Friend to the Bedside. For more information about registering for the Illinois DDNA conference, please contact Deb Davis at 309-397-7828.


It's Flu Shot Time Again!

Influenza is a serious illness, which can kill up to 49,000 across the U.S., during a severe flu season. A flu vaccination is the best protection against the flu. Getting vaccinated not only protects you, but it helps keep you from spreading the flu to others.

The Centers for Disease Control and Prevention has recently recommended that everyone six-months of age and older get vaccinated. The fact that healthy adults were hardest hit by 2009 H1N1 virus prompted the CDC to broaden the “at risk” group to everyone over six-months old. This new “universal” recommendation reinforces the fact that the flu is serious and that vaccination is your best protection.

Adults 65 years of age and older are among the hardest hit by influenza. Annual vaccination remains the best protection. But, as people age, their immune function tends to decrease, which makes older adults not only more susceptible to infections, but also less responsive to vaccination. However, the FDA has recently licensed a new higher dose vaccine for people 65 and older.

Many people with I/DD are more susceptible to serious health problems if they become infected with the influenza virus. It is important for nurses to make sure their clients are immunized. It is also important to make sure that everyone who provides direct care and services to people with I/DD is also immunized. By protecting caregivers, we also protect clients.

SO GET YOUR FLU SHOT!


Federal Government Votes to Eliminate the Word "Retarded"

With a unanimous vote, the House of Representatives last week approved a bill to remove the terms “mentally retarded” and “mental retardation” from federal education, health and labor laws. This bill passed the Senate last month, and is now awaiting President Obama's signature. Called "Rosa's Law," it changes the phrase "mentally retarded" to "an individual with a disability." The law, however, does not affect any services, rights, responsibilities, or educational opportuntities for people with intellectual disabilities.


Opportunity for I/DD Nurses to Comment on National Quality Strategy for Health Care In United States

DDNA has become aware of an opportunity for any interested party to provide input on "Quality Strategies for Health Care" in the United States. There are many issues that affect the quality of health care for persons with I/DD. If you have concerns that you want to voice about the quality of health care available to people with I/DD, this is an opportunity for you to do so. Please note that the deadline for providing your input is October 15th. Below is the information that we received:

"The Secretary of the Department of Health and Human Services (HHS) is seeking public input in the development of a National Health Care Quality Strategy and Plan [PDF - 53 KB]. HHS welcomes comments and suggestions on all aspects of the proposed structure, principles conceptualization, and specific details of the National Quality Strategy.

This link http://www.hhs.gov/news/reports/quality/nhcqsap.html includes a broad framework that will be open for public comment until October 15, 2010; the first ‘edition’ of the national strategy must be delivered to the Congress by January 1, 2011. The framework represents a collaborative effort that included AHRQ, CDC, CMS, the Office of Health Reform, SAMHSA, OASH, and all operating and staff divisions of HHS."


Fall Newsletter Now Available

DDNA's Fall newsletter is now available to all current DDNA members. Please remember that you must be logged in to the website to download the newsletter.
DDNA now offers multiple versions of the newsletter. If you want read the newsletter articles, plus links to new research, websites, and other resources related to your I/DD nursing practice, select the FULL version. If you want to read only the newsletter articles, select the SHORT version. If you want to print the newsletter, there is a black and white option of both versions.

You may download the newsletter here.


Provide Nursing Input to the Administration on Developmental Disabilities: Deadline August 10th

DDNA has become aware of an opportunity to provide input on a "Projects of National Significance" survey related to the care of individuals with I/DD. This opportunity has just come to DDNA's attention, and the deadline for responses is September 10th, which is next Friday, so you will need to respond quickly. Below is the information that we received:

"Administration on Developmental Disabilities (ADD) is seeking your input as we begin to consider future plans and how ADD can best meet the diverse needs of individuals with developmental disabilities, and their families, across the country.

ADD seeks to utilize our resources to work on the priorities of the developmental disabilities community, and we hope to focus our energy on the most pressing and relevant concerns affecting people with developmental disabilities and their families. As such, we are looking for your thoughts regarding the focus of future Projects of National Significance (PNS).

The purpose of PNS is to:

Create opportunities for people with developmental disabilities to directly and fully contribute to, and participate in, all facets of community life; and Support the development of national and state policy development, with the support and assistance of individuals with developmental disabilities and their families, to reinforce and promote the self-determination, independence, productivity, inclusion, and integration of these individuals into all facets of community life."

If you have concerns or suggestions related to the most pressing and relevant concerns affecting people with developmental disabilities and their families, please take a moment to go to the following link: http://www.acf.hhs.gov/programs/add/survey/survey_coded_final.html.

Please note that although this form requests information of individuals with I/DD and or their families, it also allows input from "professional staff," which would be YOU!

Thank you for your time and attention to this opportunity for nursing professionals to provide input to the Administration on Developmental Disabilities.

-------------------------- Mary Alice Willis, MSN, RN Executive Director --------------------------


Invitation to Speak at DDNA's Annual Education Conference in May 2011

DDNA's 19th Annual Education Conference will be held in Hartford, CT, on May 13-17, 2011. Our focus will be on clinical topics related to the health care of persons with I/DD.

Have you thought about speaking at the conference? Well, now is the time to take action. DDNA is calling for speakers with expertise in the clinical care of individuals with I/DD. The deadline for submission of a speaker application is October 1st, 2010. All you CDDNs and DDCs out there -- you have proven your knowledge of DD nursing and are actively working in your areas of expertise. Please consider sharing your knowledge.

We know that presenting a session requires preparation time and hard work. But there are also rewards! Speakers receive free conference registration (a value of $395). And because putting together and presenting a conference session is a learning experience, presenters will also receive five hours of CE toward certification renewal.

Speaking at a national conference is also a significant addition to your professional resume. Plus you get the personal satisfaction that comes from rising to the challenge of sharing what you know and meeting that challenge. We are sure that what you know about I/DD nursing could fill volumes.

Information about presenting at the conference can be found on the DDNA website at: http://www.ddna.org/pages/conference_speaker. If you are considering being a speaker, please feel free to contact DDNA's national office for more information. We are glad to advise and support you along the way.

If you are not quite ready to step up to the podium yourself, but know of a great speaker, please contact her/him with information about our conference. Or provide DDNA with the contact information, and we will make the contact.

It's your conference!!! We are all working together to create a great education and networking opportunity. We invite you to contribute to the program!


2010 Conference CE Available

The CE certificates for the DDNA 2010 Annual Conference are now available at: http://www.ddna.org/workshops/index. Please remember that you must be logged in to the DDNA website with your username and password to access the certificates.

If you need the certificates just for your certification renewal and not for your state nursing license renewal, you do NOT need to complete all the evaluations. You may simply print out your Certificates of Attendance at the top of the screen and mail them with your certification renewal packet.

If you need Continuing Education Certificates for your state nursing license renewal, you must select ALL the sessions that you attended and follow the directions to complete the evaluations for each session. Please note, you MUST select at least session for each conference day that you attended.

If you have any questions, please do not hesitate to contact the Executive Office.


Welcome Nebraska Nurses!

Forty-two nurses from the state of Nebraska joined DDNA this month! We'd like to welcome each and every one of you. We hope that the 70 hours of online education, the 1300+ resources, and our publications are helpful to you. All are now available free to you as members on our website. Just log in with your username and password. Go Nebraska!!


Conference Attendees Looking for Speaker Slides

The conference slides are posted on this website's Resources page, under "Conference 2010." To view the slides, log in with your username and password. We are aware that a couple of speakers made last minute changes in their presentations, and that a few did not provide slides in advance. We are contacting these speakers and hope for a quick response from those willing to provide their materials. When we have received them, we will post the updated materials on the Resource page of this website. At that time, we will notify all conference attendees by email that the slides are available.


YouTube Videos on Needs of Individuals with I/DD

A multi-disciplinary team composed of professionals from the University of Alabama at Birmingham (UAB) and United Cerebral Palsy of Greater Birmingham completed a needs assessment to learn more about the availability of healthcare information and services to individuals with disabilities and their families. The needs assessment surveyed four audiences: individuals with disabilities, families/caregivers, healthcare professionals, and students in the health professions. Results from the needs assessment were used to develop six brief educational videos posted online at http://www.youtube.com/UCPBirmingham. The videos address important topics for consumers, family caregivers and clinicians in an effort to improve the quality of healthcare and health education for individuals with disabilities. For more information, please contact Dr. Brian F. Geiger at bgeiger@uab.edu.


DDNA 2010 Annual Education Conference

Thanks to all who attended DDNA's 18th Annual Education Conference, with a special thanks to all who pitched in to help and to provide positive support. We also want to thank our speakers for sharing their knowledge about the health care of people with I/DD and their varied viewpoints on this topic. Specifically to our speakers who shared their clinical expertise, thank you for the new knowledge and skills that members can take back and incorporate into their practices.

The Overview of I/DD Nursing course held on Friday was attended by 80 nurses, 25 of whom took the cert exam at the conference. We wish them all success! And thanks to the volunteers who gave their time to proctor.

Thanks also to members who attended the Preconference on Medication Administration in Community Settings. We know that there is no quick fix for the problems that nurses and individuals with I/DD face related to med admin, but the group work that attendees did at the conference has given DDNA's Medication Management Task Force a wealth of new information with which to continue its efforts. We also are very encouraged by the support offered by Michelle Riley and Nancy Chornick from the NCSBN, who spoke at our conference and then informed DDNA that they will be taking our concerns back to the NCSBN for discussion with State Board of Nursing Directors from all over the country. The Medication Administration Task Force will continue to work on behalf of DDNA's membership to advocate for protection of nurses who delegate medication administration and to develop standards for this important aspect of nursing care. People with I/DD must receive their medications correctly!

We want to thank AADMD for their contributions to the conference -- and for their genuine appreciation of I/DD nurses. And also for their hula dancing!

Conference session evaluations for CE certificates will be available online in two weeks. We will send an email blast out with directions on how to complete the evaluations as soon possible.


Early Bird Conference Registration ends Saturday!

The Early Bird registration for the 2010 Conference in Reno, Nevada ends midnight (Eastern Time) on Saturday, April 10th. You can save up to $65 in registration fees by registering now!

Register online at: www.ddna.org/conference/register. Members, be sure to log in first to receive an additional member discount.

We are also keeping the DDNA office open until midnight on Saturday if you would like to register by phone with a credit card. Our phone number is 800-888-6733. If you are mailing your registration and want the early bird special rate, please make sure to get it postmarked by April 10th.


Request from Medication Admin Task Force

We continue to seek comments from DDNA members about the nurse's role in medication management for individuals who reside in community settings. How it is this aspect of your I/DD nursing practice going for you? Is your med management program an example of excellence? We'd like to hear about your program and its successes. Alternately, do you have concerns about medication administration in the community settings in which you work? What system problems are you seeing that lead to medication errors? Do you have examples of errors that you would like to share with the DDNA Medication Management Task Force? You may email them to contact@ddna.org. Please include the name of the state in which you work. All other identifying information, including your name, will be kept strictly confidential. We promise! DDNA is working to create standards to improve medication administration to individuals with I/DD in the community. The information that you share helps us to make sure that we are addressing your areas of nursing concern.


World Autism Awareness Day

World Autism Awareness Day is April 2nd. To all DDNA members who provide care and services to individuals or have a family member with an autism spectrum disorder, we extend our appreciation for your daily efforts, joys, heartbreaks, and challenges. As an I/DD nurse, you are making a positive difference in the lives of people on the autism spectrum.


Early Bird Conference Registration Discount Ends April 10th!

A reminder to everyone who plans to attend the 2010 Annual Education Conference in Reno May 16-18th. You will save $50 on your conference registration fee if you register before midnight on April 10th. If you would like more information about this year's exciting conference or would like to register online to attend, go to: DDNA's Conference Page.

If you would like to print out your registration and mail it in, you can download the forms here. Your registration must be postmarked before midnight on April 10th to get the early bird discount.

Rooms at the beautiful Grand Sierra Resort are just $59/night. What a bargain! Make your discounted room reservation by calling 800-648-5080. Tell the reservations clerk that you are with the DDNA 18th Annual Education Conference.

It is going to be an outstanding and historic conference that you do not want to miss.

See you in Reno!

DDNA


How to Access Archived Version of Nurse Delegation Webinar

Interested in last week's nurse delegation webinar offered by the National Direct Service Workforce Resource Center of the Centers for Medicare and Medicaid Services? It is now available archived online at http:// www.dswresourcecenter.org/tiki-index.php?page=Webinars/Calls (external link) Caution: Please remember that the webinar speakers from North Dakota and New Jersey are providing information about what is happening in their states with regard to the delegation of medication administration. Do not assume that the state nurse practice laws and the information provided about medication administration programs in these two states apply to nursing practice or medication administration laws or programs in your state or workplace.


New Savings on Hotel Rooms at DDNA 2010: Rooms $59 Suites $90

The Grand Sierra Resort in Reno has just offered DDNA an additional substantial discount on hotel rooms for the 2010 Annual Education Conference between held from May 15-18th. The rate for the regular hotel rooms is now just $59/night. The luxury Summit Suites, which contain a microwave and refrigerator, are now just $90/night. We thank the beautiful Grand Sierra Resort for helping to make this conference more affordable for our members! If you have already booked your hotel room for the conference, you do NOT need to call the Resort. Your reservation will automatically reflect the reduced price.


Good Physician/Bad Physician: Got Any Examples?

DDNA has received a request from Dr. Rick Rader, who is planning for a Special Olympics Clinical Symposium (in conjunction with the University of Nebraska School of Medicine) that will be held at the upcoming National Games. The title of the symposium is: "The Good, the Bad, and the Ugly: Clinician Interface with Patients with Intellectual Disabilities." It would be appreciated if you, as an I/DD nurse, could provide examples of the "best" and the "worst" examples of physician/dentist interpersonal skills and actions that you have seen during their care of individuals with I/DD. No names, please! Dr. Rader wants to create a series of vignettes in which these best and worst interpersonal skills will be displayed for medical students (with accompanying discussions). This is your chance to influence the education of future physicians -- because they may be caring for your individuals in the near future. Please send your examples to contact@ddna.org. DDNA will forward them to Dr. Rader after removing all identifying information about you, so your submission will be completely confidential. Thanks for helping with this project! DDNA


Webinar on Nurse Delegation

On Wednesday, February 17, 2010 at 2:30 PM EST Susan Reinhard, RN, PhD, of AARP and national expert on nurse delegation, will moderate the webinar and provide an overview of nurse delegation. Bill Ditto, New Jersey Department of Human Services, will discuss a nurse delegation pilot program in NJ. Researchers from Rutgers who are evaluating the pilot will also be on the call (Jennifer Farnham and Nirvana Petlick). Connie Kalanek, PhD, RN, of the North Dakota Board of Nursing will discuss changes in ND to support nurse delegation; Linda Wurtz of ND AARP will also participate on the call. Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/622376521 (external link) The participant passcode for calling into the webinar is: 1-888-844-7278. When you call in, the participant passcode is: 2695711#


Like to Comment on Medication Management in Your State?

If you completed the email survey about medication management for persons with I/DD in community settings and would like an opportunity to comment further or in depth about your concerns and questions, please submit your comment or question to DDNA. Be sure to include "Medication Management" in the subject line. If you did not receive the survey, please write "Need survey" and we will send it to your email address. DDNA wants to gather as much information as possible about the concerns and issues facing I/DD nurses who care for individuals who live in community settings so that we can work to advocate for nurses and better care for these individuals.


DDNA Survey on Medication Management in Community Settings

Safe, effective medication management is a fundamental need - and a right – for persons with Intellectual/Developmental Disabilities (I/DD). In community-based service programs, medications for individuals with I/DD are often managed by unlicensed direct support personnel without standardized criteria or training and with little nursing involvement or oversight. This approach to medication management creates safety concerns for the person with I/DD and may place the nurse at risk for practicing outside the established standards of nursing care practice. Nurses are faced with vague and conflicting laws and regulations in community settings, which create barriers to safe medication management. Using a standardized approach to medication management can help assure safe medication administration for the person with I/DD and limit practice conflicts and liability for the nurse. To address this, DDNA has created a medication management task force to establish aspirational guidelines for medication management in community-based settings. The task force will be considering the following as it develops these guidelines: State Nurse Practice Acts and related statutes, related administrative codes and/or regulations; and prevailing service provider and agency practices. DDNA is seeking the input of ALL members on this very important issue. If you did not receive an email from DDNA on January 20th with a link to the medication management survey, please email admin@ddna.org and we will send you a survey form. Thanks to all for helping DDNA to gather this very important data.


DDNA Annual Conference Online Registration Now Available

To register online for the 2010 Annual Education Conference, go to: http://www.ddna.org/conference/register. Conference brochures are also in the mail. You should be receiving yours soon. If you would like additional copies of the brochure to share with members of your chapter/network, your co-workers, or your employer, please call the DDNA office at 800-888-6733. This year's conference brings together top leaders in the field of I/DD, as well as many topics of clinical interest. Also offered is a very important preconference on medication management for individuals with I/DD who reside in community facilities. We will be focusing on safe medication administration for the person with I/DD as well as protection of the nurse from nurse practice conflicts and liability. If you need help with registration, please call DDNA. We are looking forward to seeing you in Reno!


2010 Conference Registration coming soon!!

The Board of Directors and staff at the DDNA office wish everyone safe and happy holidays! DDNA members should expect to receive a conference brochure in the mail in the coming weeks. Detailed descriptions of sessions, a complete schedule, and registration forms are included in each brochure. If you know of someone who isn't a DDNA member, but should receive a conference brochure, contact the DDNA office and we'll included them in the mailing.


An added convenience for you

We've recently updated many of the pdf forms that you download from the DDNA website. Now, when you download membership, certification, nomination, and CE approval pdf forms, you'll notice the added ability to type directly onto the form - just like the IRS allows. Once you type into the form, you will be able to print out the completed form - no more messy forms!!


Newsletter and New Resource

Available now: the December 2009 newsletter, which contains interesting articles about the certification process from a fellow member's perspective, 2010 conference information, and important news from the world of I/DD. Also, on the Resources page, we've posted a link to a handbook helpful for families who may face crisis.


Looking forward to the 2010 Conference?

Conference time approaches and DDNA is in the final stages of preparing the conference brochures. Members will have brochures in their hands by January, but if you want a sneak peak at the schedule, we've posted it in the Conference section of this site - go to "Conference," then click on "Schedule" in the Quick Links box.

If you know a DD nurse who isn't a member and would like to receive a conference brochure, send their mailing address to us and we'll send them a brochure.

Expect some pleasant surprises at the 2010 Conference!


New Membership Brochures are here!

DDNA has a newly redesigned membership brochure! The new brochure has plenty of room on the application, plus added information about certification and member benefits. If your chapter/network would like DDNA to send you the new brochures for you to distribute at your next meeting, contact the DDNA office by email (use the online form on the "Contact" page to help us control spam). Want a sneak peek? Click here to download a pdf of the brochure.


Got Joy in Your Job??

All DDNA members know that caring for people who have intellectual and developmental disabilities brings many moments of pure joy. Dr. Rick Rader is going to be teaching in a mini-fellowship in adult I/DD medicine for physicians at the Mountain Area Health Education Center in Asheville, NC. One of his responsibilities is to collect input about the JOY that comes from providing health care to people with I/DD. He asks if DDNA members would be so kind as to share their experiences with joyfulness in their daily work and how they experience joy in their interactions with the individuals for whom they provide care and services. Dr. Rader hopes that this information will help recruit medical and dental students to this specialty. We here at DDNA will also print the responses in our next newsletter -- so that you can share your joys with other members, and read about theirs. Maybe the responses will also help you recruit more nurses to our specialty. Click Here to email your joy to DDNA. Thank you very much!


Be a Speaker at DDNA's 2010 Conference in Reno

Who are the experts in I/DD nursing? DDNA members are! Have you thought about being a speaker at the annual education conference in May? Well, now is the time to take action. DDNA is calling for nurse speakers and the deadline for submission of a speaker application is October 1st. All you CDDNs and DDCs out there -- you have proven your knowledge of DD nursing and are actively working in your areas of expertise. As of today, we do not have a single speaker application from a CDDN or DDC. We know that presenting a session requires preparation time and hard work. But there are also rewards! Speakers receive free preconference and conference registration (a value of $545). And because putting together and presenting a conference session is a learning experience, presenters will also receive five hours of education credit toward their certification renewal. Speaking at a national conference is also a significant addition to your professional resume. Plus you get the personal satisfaction that comes from rising to the challenge of sharing what you know and meeting that challenge. So take a few minutes to reflect on how much you know about I/DD nursing. We are sure that it could fill volumes. Information about presenting at the conference can be found on the Conference page of this website. If you have information to share, but would prefer to share it as a poster session, there is also information about presenting a poster on the Conference page. If you are considering being a speaker or poster presenter, but want more information, please feel free to contact DDNA's national office. We are glad to advise you and support you along the way. If you aren't quite ready to step up to the podium yourself, but know of a great nurse speaker, please contact her/him with information about speaking at our conference. Or provide DDNA with the contact information, and we will make the contact. It's your conference!!! We are all working together to create a great education and networking opportunity. We invite you to be part of the program!


School Nurses in PA Mandated to Learn About I/DD in Children

If you have course content, resources, reading materials, or a course outline that would be appropriate and useful for school nurses who care for exceptional children, DDNA has a new member who would welcome your help. Lori Pierangeli is developing a new course for school nurses who care for children with I/DD. This course is part of the new mandates for school nurses in Pennsylvania. For more information or to offer resources, you can contact Lori at lpierangeli@po-box.esu.edu or phone her office at East Stroudsburg University at 570-422-3564. Thanks to Pennsylvania for recognizing that children with special needs need school nurses who know how to meet those needs!


September Newsletter

DDNA's September Newsletter is now available on the Newsletter page.


The H1N1 Virus and I/DD Nursing

Are you concerned about swine flu and its possible impact on people with I/DD? Having I/DD alone does not increase a person's risks if they are infected with the H1N1 virus, but there are people with I/DD who are more at risk for complications. This would be a good time to break out your agency's/facility's infection control P&P and make sure that you are doing all that you need to do to protect your clients and yourself. For accurate information and guidance, we have added a section on Swine Flu on our Resource page.


New Products Added!!

We have some new products available in the DDNA store. Mugs, shirts, gifts - there's something for everyone!


Contribute to a Nursing Research Study

If you have a daughter who is 9-18 years of age, and you have 10 minutes of time, you can contribute to a research study called "Parental attitudes towards Human Papillomavirus Vaccine in 9-18 year old girls." The research is being done by Dr. Diane Reynolds , who is a colleague of Dr. Kathleen Cervasio, a DDNA member who spoke at our conference in Orlando this year. This also is a good time to remind DDNA nurses to advocate for HPV vaccination for your young female individuals with I/DD.

Here are the directions provided by Dr. Reynolds:

"You are being asked to participate in a research study called “Parental attitudes towards Human Papillomavirus Vaccine in 9-18 year old girls,” conducted by Diane Reynolds, Assistant Professor in the School of Nursing at Long Island University, Brooklyn Campus. The purpose of the research is to assess parents/guardians attitudes towards human papillomavirus vaccine and to examine factors that may contribute to accepting or refusing vaccination for their 9-18 year old daughter. Your child will NOT be contacted nor will their input be elicited at any time during this study.

As a participant you will be asked to complete a onetime on-line questionnaire with no further follow-up. The questionnaire will take approximately 10-15 minutes to complete. No risk or physical discomfort is involved.

While there is no direct benefit to you from participation in this study, it is reasonable to expect that knowledge learned from the study may benefit others in the future.

Strict guidelines have been developed to ensure that your identity as a participant will remain confidential. Questionnaire responses will be collected anonymously and will not be linked to any identifying information.

This study has been approved by the Internal Review Board at Teacher’s College, Columbia University as well as Long Island University. You may access the questionnaire online by entering the link below in your browser:

http://tinyurl.com/cx9oau

I am asking that you complete the questionnaire within the next 2 weeks.

Much thanks for your consideration. I encourage your participation and welcome any questions you may have regarding this study.

Sincerely,

Diane Reynolds, Ed. D (c), RN, OCN, CNE
Assistant Professor
Long Island University
718 488-1655
diane.reynolds@liu.edu


A Recipe Sure to Get Things Moving Along

At the DDNA Annual Conference, Karen Green McGowan dicussed her fruit butter recipe for nutritional bowel management during her conference presentation. There have been numerous requests for this recipe, so Karen has graciously allowed us to post it for DDNA members in the General Topics section on our Forum page. Not only does it sound tastier than laxatives, but think how much fun it will be to whip up a batch! Follow Karen's directions, and then respond to the Forum post about your results. Thank you so much, Karen, for sharing your knowledge and expertise!


Health Care Plans for Adolescents and Adults with I/DD

A DDNA member is seeking health care plans specifically for adolescents and adults with I/DD. If you know where to find them or have some to share, please help her out by going to the Forums page (you must be logged in to the website). On the Forums page, click on General Topics, and then on Medical/Nursing Care Plans to respond to the request. This member will compile a list of the information that she receives, and DDNA will put that information up on the Resource page for all members. Thanks for sharing!!!


Board of Director Election Results

Elections for DDNA Board of Director positions have closed and all votes have been counted. Congratulations to Kathleen Brown, who is the new President-Elect! Kathleen will also serve as DDNA's Certification Chairperson. Congratulations also to Judith Stych, who is the new Vice-President! Judith will serve as Chapter/Network Chairperson. Many thanks to all who voted. We welcome Kathleen and Judith to their seats on the Board and to their service to DDNA.


Voting Ends at Midnight!

Today is the last day to vote for your new President-Elect and Vice-President of the DDNA Board of Directors. Information about the candidates and your online ballot are available on the Elections page of this website. Candidates are separated by just a few votes -- so your vote definitely could make a difference. Have a voice in the leadership of DDNA and vote by midnight today!


Participate in Research Study on Health Care Coordination for Adults with Physical Disabilities

The University of Minnesota's Institute on Community Integration is conducting a research study on health care coordination for individuals with physical disabilities. We are looking for people who are knowledgeable about disability issues and/or health care coordination to participate in the study. Participants will be asked to respond to three email surveys that will take about 15 minutes each to fill out. These surveys will be distributed to participants approximately 2-3 weeks apart from one another. The first survey will ask participants to provide their personal definition of health care coordination. In the second survey, participants will be given a summary of the operational definitions of health care coordination provided by all participants in the first survey. Participants will be asked to evaluate these definitions and to identify the specific elements of health care coordination that are most important for it to be effective for adults with physical disabilities. In the third survey, participants will receive a list of elements identified by participants as most important for effective health care coordination. They will be asked to rank the importance of each identified element.

To participate in the study please copy and paste the link below into your browser address bar:

https://survey.cehd.umn.edu/Surveys/TakeSurvey.aspx?s=08242FB9CC0D48A08EA80E79E8C7039B

For more information on this study, please contact:
Dr. Brian Abery
University of Minnesota
Institute on Community Integration
111C Pattee Hall, 150 Pillsbury Drive SE
Minneapolis, MN 55455
Telephone: (612) 625-5592; E-mail: abery001@umn.edu


Anybody Looking for a New Job?

Check out the Classifed section of this website. There are two new job postings and both sound very interesting!


Elections for Board of Director Positions Now Open!

It is time to vote for two Board of Directors positions. Kathleen Brown and Norma Lester are running for President-Elect. Richanne Cunningham, Christine Near, and Judith Stych are running for Vice President. To read the candidates' qualifications and to cast your votes, log in with your username and passwork and then click on Elections on the menu bar. Voting closes at midnight on June 30th. Vote now and support your favorite candidate.


June Newsletter Available to Members

The DDNA's June Newsletter, with new articles, the latest DDNA information, lots of new resources, network/chapter news, and info and pictures from the conference, is now available to members. Log in with your username and password and click on Newsletter. Our next newsletter will be available in September. We're always looking for articles and information of interest to members, so get out your pens or computers, and contribute to the next newsletter.


Missing slides from the Conference?

A few of the speakers from the 2009 conference have recently submitted their slides and handouts. These seem to be trickling in, so check the conference manual page every so often to see if anything has been added.

The most recent additions have been on the "Systematic Desensitization" and "Cycle of Disadvantage" sessions.


AADMD's Nurse of the Year

From AADMD: "Each year, the American Academy of Developmental Medicine recognizes a member of DDNA whom they believe to be an outstanding example of excellence in I/DD nursing. This year, they honored Doreen Canton as the Nurse of the Year at the Developmental Disabilities Nurses Association (DDNA) and American Academy of Developmental Medicine and Dentistry (AADMD) meeting in Orlando. Doreen stands out among her peers for her vision and resourcefulness in creating meaningful lives for people with DD. It is an honor to work with Doreen. I am very grateful to have someone to go to with my most challenging ethical, administrative and clinical questions. She is a also a superb teacher for caregivers. While at Golden Gate Regional Center, she developed training DVD’s to help teach best practices. While too modest to take credit, Doreen provided key leadership in designing model services, health care and homes for people moving out of Agnews Developmental Center. The Agnews closure has received national recognition for quality and innovation in serving people with complex disabilities in the community. Doreen is now demonstrating her steadfast commitment to quality and service as care coordinator at Health Plan of San Mateo where she is helping develop new clinical services for people with DD. No matter where she works or where she goes, when a patient has a problem, Doreen finds a way to solve it. As a Certified DDNA nurse, Doreen is a member of a select group of nursing leaders who elevate the profession through their commitment to excellence. " - Clarissa Kripke


Conference Photos

Photos from the 2009 Annual Education Conference are up! View the photos from either the Community page (then choose "Latest Photos"), or the Conference page.

You can also view the photos (and make comments) from DDNA's Flickr site, at http://www.flickr.com/photos/ddna_national/sets/72157618203847912/show/


Conference Notes

To all that attended this year's conference in Orlando, Florida, it was a pleasure to meet you again! Thank you for all the positive feedback.

Dr. Rader recently sent in his slides and they are available on the conference manual page (remember to log in first).

For those of you wishing to receive CE for the conference, the evaluations will be available in the next few weeks on this website. Check the CE/Education page for details.


Follow DDNA Tweets

DDNA is on Twitter. Our Twitter id is DDNAnational. Follow us!!


Volunteering for the Conference

It's not too late to lend a hand at this year's conference! We need volunteers for the registration desk, room monitors, note taking, and a few other tasks.

If you'd like to be part of the action, contact us at the DDNA office (800)888-6733. We'd be glad to have you!


Conference Manual

The conference manual is available! If you have registered for the conference, log in, go to the Conference page, then click on the Conference Manual page (click here for a shortcut). For those of you who have chosen to download the manual from this site, instructions are given. If you need any help, call us at the DDNA office (800-888-6733) and we'll walk you through the steps.

For those of you who are ordering a nicely bound printed copy from DDNA's printer, click here to place the order. Order soon, so it arrives at your house in time for you to leave for the conference.


March Newsletter Now Available

The March newsletter is now available to members on the Newsletter page. This issue is full of articles of interest, the latest news in I/DD, and important announcements for members. Please also remember that nominations for President-Elect and Vice-President of the DDNA Board of Directors are open until March 31st. More information on nominations can be found on the Elections page of this website.


Don't Forget: Call for Nominations for DDNA Board of Directors

Nominations are open for two offices on the DDNA Board of Directors, President-Elect and Vice-President. The President-Elect serves for two years and then assumes the position of President for two additional years. The Vice President serves for two years. Nominations must be postmarked no later than March 31st. If you are interested in running for office, or in nominating someone for office, all of the information and forms that you need are available on this website from the Elections page. Make sure to click on and thoroughly read every Quick link on the Election pages. Pay special attention to the time commitments involved for each Board position and the rules for campaigning.


DDNA 2009 Conference - Breakfast Symposium

Treatment Plans for Seizure Emergencies: Implications for the Developmentally Disabled

Full-Service Plated Breakfast Symposium – Sunday, May 10, 2009, 6:45am - 7:45am.
Speakers are Christine O’Dell, RN, MSN, Montefiore Medical Center, Bronx, NY
and Stephanie Wincik, RN, Erie Homes for Children and Adults, Erie, PA

This symposium is sponsored by Valeant Pharmaceuticals North America

Acute seizures are a common comorbidity among intellectually and/or developmentally disabled patients. Special considerations apply to treatment in this population. Rapid and appropriate intervention in seizure emergencies is critical for reducing morbidity and mortality. Health care professionals should prepare in advance to ensure that caregivers are aware of the action to take when prompt intervention is required. This presentation will review emergency interventions that are available today to improve seizure outcomes in these patients. The importance of seizure emergency treatment plans will be addressed, the major plan components will be reviewed, and the use of Diastat® (diazepam rectal gel) will be discussed.

To register for the breakfast symposium, please contact Cindy Born of MedLogix Communications by phone at 847-413-1445 or by e-mail at cborn@medlogix.org.
Registration is required, as space is limited.


Taking the Certification Exam at the Conference?

The group certification exam is being held on Monday, May 11th at the Annual Education Conference. If you have been approved to take the exam, but have not yet sent in your registration form, now is the time to do so. Once you receive your exam confirmation letter, contact DDNA if you plan to take the exam in Orlando. When you arrive at the conference, go to the Board of Directors table to set an appointment time for your exam. If you would like to use your own laptop to take the exam, you may do so. Your President, Terry Broda, is again this year teaching her very popular certification preparation course at the conference. We hope to have many new CDDNs and DDCs this year!


Call for Nominations for DDNA Board of Directors

Nominations are open for two offices on the DDNA Board of Directors, President-Elect and Vice-President. The President-Elect serves for two years and then assumes the position of President for two additional years. The Vice President serves for two years. Nominations must be postmarked no later than March 31st. If you are interested in running for office, or in nominating someone for office, all of the information and forms that you need are available on this website from the Elections page. Make sure to click on and thoroughly read every Quick link on the Election pages. Pay special attention to the time commitments involved for each Board position and the rules for campaigning.


New Discounted Room Rate for Conference Hotel

The Royal Pacific Resort, upon hearing about how funding cuts have been affecting I/DD nurses, has dropped its hotel room rate for DDNA to $149/night. Make sure to mention that you are attending the DDNA conference when you make your reservation. If you have already booked your hotel room, the discount will be automatically applied to your room rate. And thank you to the Royal Pacific Resort for helping us out!


Three Scholarships Now Available for the Annual Conference!!!

Would you like to attend the 2009 Conference - For Free? DDNA is now offering three scholarships to its 2009 Annual Education Conference being held at the Loews Royal Pacific Resort at Universal Studios in Orlando, FL. May 9-12. To be eligible to win this scholarship, you must be a current member of DDNA and write an article that would be suitable for publication in the newsletter. The article can be about any topic related to I/DD nursing and must be at least 2000 words, not including references. Mary Alice Willis, DDNA's Executive Director and editor of the newsletter, will read the articles and select two winners from among the submissions. Type your name and contact information on a cover sheet. Do not write your name on any of the pages of the article. The article will be judged based solely on content, without DDNA knowing who wrote the article. The article must be received at the DDNA office by Monday, February 16th at 5 PM. The winners' articles will be published in the March newsletter. All other articles submitted will be considered for publication in future newsletters, and authors may receive up to 2 hours of continuing education credit toward certification renewal. For more information about writing an article for the newsletter, including topics, guidelines, and requirements, go to the newsletter page of the DDNA website and click on "Submit an article." Note: This scholarship does not include transportation to the conference or hotel.


DDNA Conference Registration is now OPEN!!

Registration for the DDNA's 2009 Annual Education Conference in Orlando, Florida, has begun. To register, go to the Conference page and click on the "Registration" link in the Quick Links box. If you are a member, be sure to login before registering to get your member discount.

If you need help registering, want to register a few people at one time, or need a purchase order, call DDNA at 800-888-6733 M-F 9-5 ET.

See you at the conference!


Would you like to attend the 2009 Conference - For Free?

This is a reminder: DDNA is offering two scholarships to its 2009 Annual Education Conference being held at the Loews Royal Pacific Resort at Universal Studios in Orlando, FL. May 9-12. To be eligible to win this scholarship, you must be a current member of DDNA and write an article that would be suitable for publication in the newsletter. The article can be about any topic related to I/DD nursing and must be at least 2000 words, not including references. Mary Alice Willis, DDNA's Executive Director and editor of the newsletter, will read the articles and select two winners from among the submissions. Type your name and contact information on a cover sheet. Do not write your name on any of the pages of the article. The article will be judged based solely on content, without DDNA knowing who wrote the article. The article must be received at the DDNA office by Monday, February 16th at 5 PM. The winners' articles will be published in the March newsletter. All other articles submitted will be considered for publication in future newsletters, and authors may receive up to 2 hours of continuing education credit toward certification renewal. For more information about writing an article for the newsletter, including topics, guidelines, and requirements, go to the newsletter page of the DDNA website and click on "Submit an article." Note: This scholarship does not include transportation to the conference or hotel.


Happy New Year from DDNA!

Thanks to all who have contacted us with such positive comments about the new website. We are glad that you are finding it easy to use. As a reminder, if anyone does have a website question, contact us and we will do our best to answer it. We are also starting to receive emails from members who want to be more involved with DDNA as volunteers. We encourage you to read about how you can be active in DDNA on our "Get Involved" page. There is much work to be done and we value our committees and volunteers. As our new committees form, we will be posting member-only access to committee information and activities. So go ahead and fill out the DDNA Interest Form!


December Newsletter

DDNA's December Newsletter is now available on the newsletter page of the website. Log in with your username and password, and read this latest issue to catch up with DDNA news and other new information in I/DD.


Two Scholarships Available for Annual Conference

DDNA is offering two scholarships to its 2009 Annual Education Conference being held at the Loews Royal Pacific Resort at Universal Studios in Orlando, FL. May 9-12. To be eligible to win this scholarship, you must be a current member of DDNA and write an article that would be suitable for publication in the newsletter. The article can be about any topic related to I/DD nursing and must be at least 2000 words, not including references. Mary Alice Willis, DDNA's Executive Director and editor of the newsletter, will read the articles and select two winners from among the submissions. Type your name and contact information on a cover sheet. Do not write your name on any of the pages of the article. The article will be judged based solely on content, without DDNA knowing who wrote the article. The article must be received at the DDNA office by Monday, February 16th at 5 PM. The winners' articles will be published in the March newsletter. All other articles submitted will be considered for publication in future newsletters, and authors may receive up to 2 hours of continuing education credit toward certification renewal. For more information about writing an article for the newsletter, including topics, guidelines, and requirements, go to the newsletter page of the DDNA website and click on "Submit an article." Note: This scholarship does not include transportation to the conference or hotel.


Welcome to the new DDNA website!

Welcome to the new DDNA website! It contains many new features and lots of new information, with easier access to pages and forms from the menu bar right to the left. If you are a member, you can login with your current username and password on the green bar above. This will allow you access to member-only pages and benefits. Once logged in, you can access your profile to see your membership and certification info, change your password, renew your membership, and keep your contact information up-to-date. Try it now! We have also made it easier to join and renew, as well as to locate and download forms right from the home page. You can practice for the cert exam by checking in each week to take the Certification Preparation Question of the Week on the Certification Study page. You can join new I/DD-related social and professional networking groups on our Community page, view photos from the 2008 conference, and check out our newly "renovated" forums page. You can contribute your expertise and increase your involvement with DDNA on our new "Get Involved" page. We are always adding new information and links to our Resource page -- you can spend a few days on this page alone!


DDNA's 17th Annual Education Conference

Be on the lookout for your DDNA 2009 17th Annual Education Conference brochure. The conference will be held May 9th-12th in sunny Orlando, Florida, at the Loews Royal Pacific Resort at Universal Studios. You'll learn from outstanding experts on topics of importance in I/DD nursing -- and have the opportunity to network in the tropical sunshine with other nurses from all over the US and Canada! You can access information about the conference on the "Conference" page of this website.


Let's get networking!

MySpace! LinkedIn! DDNA Forums! Our new website offers links to social and professional networking opportunities. We have redesigned the DDNA forum page to make it easier for you to track discussion threads. We have created a DDNA MySpace page for those of you who enjoy social networking. We have also created a DDNA LinkedIn page for those of you would like to network professionally. You can access these new networking sites on the "Community" page of this website.

DDNA Publications

Standards of DD Nursing Practice

Standards of Practice

DDNA's Aspirational Standards of Developmental Disabilities Nursing Practice, is available in eBook form (pdf) from our publication storefront.
Place your order now and download immediately.


Med Management Position Paper

Position Paper

DDNA's "Position on Medication Management for Individuals with Intellectual and Developmental Disabilities" paper is available as a printed publication.
Order your printed book today.


More Publications

Visit DDNA's print storefront at http://stores.lulu.com/ddna for additional publications, including conference manuals and newsletters.