Newest Information
Why Children with Down Syndrome Have Higher Leukemia Risk
02/22/2012
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
02/21/2012
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
02/18/2012
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
02/16/2012
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
02/15/2012
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
02/08/2012
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
02/02/2012
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
02/01/2012
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
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New Handbook for Fragile X-associated Disorders
01/30/2012
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
01/27/2012
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
01/27/2012
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
01/25/2012
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!
01/21/2012
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
01/21/2012
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
01/12/2012
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
01/11/2012
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
01/11/2012
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
01/09/2012
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
01/06/2012
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
01/06/2012
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
01/05/2012
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
01/05/2012
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
01/04/2012
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
12/29/2011
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
12/22/2011
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
12/06/2011
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
12/05/2011
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?
12/05/2011
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.
href="mailto:theller@uic.edu">theller@uic.edu
312-413-1647
New Forum on Genetics Moderated by Joni Bosch, ARNP, PhD
11/30/2011
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
11/30/2011
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
11/26/2011
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
11/23/2011
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
11/23/2011
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
11/23/2011
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
11/22/2011
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
11/15/2011
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
11/09/2011
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
11/08/2011
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?
11/08/2011
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
11/07/2011
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
11/07/2011
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
11/03/2011
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
11/03/2011
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
11/03/2011
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
11/03/2011
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
11/03/2011
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?
11/03/2011
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?
11/03/2011
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
10/28/2011
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
10/27/2011
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
Alpha Thalassemia X-linked Intellectual Disability Syndrome
10/26/2011
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?
10/25/2011
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
10/25/2011
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
10/24/2011
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).
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/
About Leigh Syndrome
10/24/2011
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
10/24/2011
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.htmMen with Disabilities More Vulnerable to Sexual Assault
10/14/2011
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
10/11/2011
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
10/11/2011
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
10/10/2011
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
10/07/2011
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
10/07/2011
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
10/06/2011
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
10/05/2011
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
10/05/2011
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
October is National Down Syndrome Month
10/04/2011
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
10/04/2011
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
10/03/2011
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
09/29/2011
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
09/26/2011
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
09/26/2011
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
09/21/2011
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
09/19/2011
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
09/12/2011
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
09/08/2011
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
09/06/2011
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
09/06/2011
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
08/30/2011
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
IOM Concludes Vaccines Do Not Cause Autism
08/25/2011
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!
08/25/2011
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
08/24/2011
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
08/19/2011
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
08/18/2011
"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
08/17/2011
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
07/19/2011
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.
Free Webinar on July 25: A Hospital Program for Adults with I/DD: Improving the Patient Experience
07/12/2011
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
07/05/2011
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
06/20/2011
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
06/16/2011
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
06/13/2011
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
06/01/2011
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!
05/25/2011
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
05/25/2011
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
04/18/2011
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
04/14/2011
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
04/04/2011
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
03/31/2011
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: href="mailto:eperkins@mail.usf.edu" target="_blank">eperkins@mail.usf.edu
Early Bird Conference Discount Deadline Fast Approaching
03/28/2011
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
03/28/2011
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
03/25/2011
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
03/10/2011
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
03/01/2011
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
02/23/2011
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
02/15/2011
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
01/18/2011
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
12/20/2010
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'>carecoor@umn.edu">carecoor@umn.edu for further information or call 612-626-7335.
Free IPads for Persons with Autism
12/03/2010
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
11/23/2010
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
11/10/2010
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"
10/20/2010
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
10/13/2010
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!
09/30/2010
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"
09/27/2010
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
09/23/2010
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
09/15/2010
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
09/02/2010
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
06/29/2010
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
06/24/2010
The CE certificates for the DDNA 2010 Annual Conference are now available at: http://www.ddna.org/workshops/index" target="_blank">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!
06/24/2010
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
05/24/2010
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
05/23/2010
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 href="mailto:bgeiger@uab.edu">bgeiger@uab.edu.
DDNA 2010 Annual Education Conference
05/21/2010
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!
04/08/2010
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
04/08/2010
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 href="mailto:contact@ddna.org">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
04/02/2010
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!
03/26/2010
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
02/22/2010
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
02/19/2010
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?
02/17/2010
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 href="mailto:contact@ddna.org">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
02/11/2010
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?
01/21/2010
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 href="mailto:admin@ddna.org">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
01/20/2010
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
01/18/2010
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!!
12/22/2009
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
12/08/2009
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
12/07/2009
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?
11/25/2009
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!
11/12/2009
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??
09/29/2009
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. href="mailto:contact@ddna.org">Click Here to email your joy to DDNA. Thank you very much!
Be a Speaker at DDNA's 2010 Conference in Reno
09/18/2009
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
09/11/2009
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
09/03/2009
DDNA's September Newsletter is now available on the Newsletter page.
The H1N1 Virus and I/DD Nursing
09/01/2009
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!!
08/25/2009
We have some new products available in the DDNA store. Mugs, shirts, gifts - there's something for everyone!
Contribute to a Nursing Research Study
08/11/2009
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
07/23/2009
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
07/14/2009
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
07/02/2009
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!
06/30/2009
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
06/24/2009
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: href="mailto:abery001@umn.edu">abery001@umn.edu
Anybody Looking for a New Job?
06/04/2009
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!
06/02/2009
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
06/02/2009
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?
05/29/2009
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
05/27/2009
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
05/20/2009
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
05/14/2009
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
04/15/2009
DDNA is on Twitter. Our Twitter id is DDNAnational. Follow us!!
Volunteering for the Conference
04/13/2009
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
04/07/2009
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
03/23/2009
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
03/11/2009
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
03/11/2009
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 href="mailto:cborn@medlogix.org">cborn@medlogix.org.
Taking the Certification Exam at the Conference?
02/20/2009
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
02/11/2009
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
02/11/2009
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!!!
02/04/2009
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!!
01/16/2009
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?
01/07/2009
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!
12/29/2008
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
12/22/2008
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
12/22/2008
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!
12/15/2008
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
12/08/2008
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!
12/08/2008
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.