1375 resources are currently available
The following is a list of links to websites that contain information that may be of value to DDNA members. This list is an open source of current informative websites. The resources have been divided into categories for quick access.
We encourage DDNA members to submit resources that would be helpful to other members. Please only suggest non-commercial sites, i.e., sites that end with .org, .edu. .info, or .gov. To submit a link, visit our contact page and send DDNA an email.
Please note: These websites are provided for information only. DDNA does not assume responsibility for the information provided nor the opinions expressed by these websites.
Categories
Teen Safety: Putting An End to Bullying
Confronting the Sexual Abuse of Women with Disabilities pdf
Power and Control Wheel: A Tool for Recognizing Abusive Behavior
Disability Services ASAP (A Safety Awareness Program)
Understanding Caregiver Abuse as Domestic Violence
Recognizing and Responding to Signs of Violence
Disability, Domestic Violence, and Survival
Forensic Interviews of Children Who Have Developmental Disabilities Part 1 of 2 (pdf)
Community Implementation Guide to Prevent Maltreatment of Children with Disabilities (pdf)
Family Violence and People with Intellectual Disabilities
People with Mental Retardation & Sexual Abuse
Invisible Victims: Violence Against Persons with Developmental Disabilites
Disability, Abuse & Personal Rights Project Vast array of articles, resources, and education available from this site.
Abuse and Neglect of Adults with Developmental Disabilities State of California
Sexual Violence Against Individuals with Developmental Disabilities From the State of Oregon
Child Abuse and Children with Disabilities From the New York State Office of Children and Family Services
Measures of Traumatic Stress & Secondary Traumatic Stress
Gift From Within A non-profit organization dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals
Beyond Abuse: Treatment Approaches for People With Disabilities
Preventing Abuse and Neglect of Children with Disabilities
Child Abuse and Neglect User Manual Series
People with Intellectual Disabilities and Sexual Violence (Word doc)
Abuse of People with Disabilities Links to resources
The Risk and Prevention of Maltreatment of Children with Disabilities
University of Florida Department of Pediatrics Division of Genetics and Metabolism Links to the newsletter archive containing information on macrocephaly disorder, tuberous sclerosis, Williams syndrome, neural tube defects, and more.
Society for Disability Studies (SDS)
NIDRR - National Institute on Disability and Rehabilitation Research
Yale Child Study Center Clinic for Genetic Forms of Developmental Disorders Program for Autism, Prader-Willi Syndrome, and Williams Syndrome
The Center for Human Development Research - The University of Texas
Coleman Institute - University of Colorado System
TRAID - Treatment and Research Institute for Autism Spectrum Disorders Vanderbilt Kennedy Center
The University of Kansas - Developed Resources for the Special Education Community
University of California, Santa Barbara - Koegel Autism Center
University of Nevada, Reno - Behavior Analysis Program
Florida Mental Health Institute - University of South Florida
Yale Developmental Disabilities Clinic
Center for Autism and Related Disabilities - SUNY University of Albany
CeFAR - Center for Excellence in Autism Research at the University of Pittsburgh
Autism Spectrum Institute at Illinois State University
Duke Center for Human Genetics
ADA Standards for Accessible Design (pdf)
Remote Signage development to address access problems for blind individuals
Accessible Design for the Blind
Smart way of living for people with dementia
Access Board: New Guidelines for Accessible Design
NCPAD - The National Center on Physical Activity and Disability
PALAESTRA Forum of Sport, Physical Education & Recreation For Those With Disabilities
Move It A guide to physical activity (pdf).
Blaze Sports A 501(c)(3) nonprofit organization that advances the lives of youth and adults with physical disability through sport and healthy lifestyles.
Sports and Recreation links From Disability Resources. An A-Z guide.
International Disabled Self-Defense Association
Adaptive Sports Center A non-profit organization that provides year-round recreation activities for people with disabilities and their families.
Wilderness Inquiry A non-profit organization that helps people from all walks of life to personally experience the natural world.
Autism Now The Autism NOW Center is a initiative of THE ARC funded by the Administration on Developmental Disabilities that provides a national source for resources and information on community-based solutions for individuals with autism, other developmental disabilities, and their families.
NAMI | Autism: Caregiver Support
Therapies for Children With Autism Spectrum Disorders - Executive Summary | AHRQ Effective Health Care Program This is the Executive Summary of Therapies for Children with Autism Spectrum Disorders published by the Agency for Healthcare Research and Quality in April 2011.
Positively Autism Positively Autism is a free e-magazine for teachers, parents and individuals with Autism. The magazine celebrates the accomplishments and contributions of people with autism, as well as positive media reports, success stories and more.
Oasis@MAAP This site provides information, training and resources for individuals, families and professionals concerned with autism.
Asperger Center for Education and Training
Interventions and Treatment Options Mayo Clinic
National Institute of Neurological Disorders and Stroke – Asperger Syndrome Information Page
Should You Explain the Diagnosis to the Child? by Attwood, Tony. Ph.D.
Asperger Syndrome – Mayo Clinic
Autism Speaks – Asperger Syndrome
Asperger's Syndrome: Guidelines for Assessment and Diagnosis by Ami Klin, Ph.D., and Fred R. Volkmar, M.D., Yale Child Study Center, New Haven, Ct
Sacramento Asperger Syndrome Information and Support
Kids Health – An Autism Spectrum Disorder
National Institute of Mental Health – What are the Autism Spectrum Disorders?
Arizona Office for Persons with Disabilities: Guide to Autism This resource was brought to our attention by students at Green Mountain Central School District
Autism and Immune System Changes Mouse Study Shows Link Between Immune System and Autism
Boys With Autism May Grow Faster as Babies
Tin Snips Tin Snips is a resource offering techniques, ideas, activities and worksheets for teachers of students on the Autism spectrum.
What is Autism Spectrum Disorder (video) From the CDC
Autism Spectrum Disorders (ASDs) - Screening From the CDC
Autism Spectrum Disorders (ASDs) From the CDC
Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs (pdf)
Practical Oral Care for People With Autism From National Institute of Dental and Craniofacial Research
Autism News From Scotsman.com
Social Stories for Sexuality Education for Persons with Autism/Pervasive Developmental Disorder from Springer Science+Business Media
Information About Pervasive Developmental Disorders
Autism Spot Streaming media, videos, blogs, forums and news.
Detect Autism Early From the CDC. Interactive tools for parents.
Vaccine Safety, Some Facts About from the American Academy of Pediatrics
Study to Explore Early Development (SEED) From the CDC
(PODCAST) Prevalence of Autism Spectrum Disorders From the CDC. 14:44 minutes
Autism and Vaccines from the Immunization Action Coalition
Project Spectrum (from Google for Educators) - Children with Autism Architect Their Ideas Using 3D Design Software
Asperger’s Association of New England
Autism Spectrum Disorder Video Glossary Hundreds of video clips that are free of charge.
The Autism Program From the Hope Institute for Children and Families.
Autism Central A bilingual Canadian portal devoted to serving individuals and organizations in the field of Autism Spectrum Disorders (ASD) and other developmental disabilities.
Yale Child Study Center Clinic for Genetic Forms of Developmental Disorders Program for Autism, Prader-Willi Syndrome, and Williams Syndrome
Autism Organizations in the US A list of organizations per state
Police and Autism: Avoiding Unfortunate Situations A resource for law enforcement professionals
TRAID - Treatment and Research Institute for Autism Spectrum Disorders Vanderbilt Kennedy Center
University of California, Santa Barbara - Koegel Autism Center
University of Nevada, Reno - Behavior Analysis Program
Center for Autism and Related Disabilities - SUNY University of Albany
CeFAR - Center for Excellence in Autism Research at the University of Pittsburgh
Autism Society of America - In The News Frequently updated news and information on autism
Autism Conferences in the U.S. and Canada
American Hyperlexia Association
Online Discussion: mailing lists, etc
AWARES - the All Wales Autism Resource
PAPA - Parents and Professionals & Autism - Northern Ireland
The National Autistic Society - UK
The Autism Research Unit (ARU) at the University of Sunderland, UK
National Autistic Society (NAS) Information Centre Online tool for autism research
Lending Library and Autism Resources - Illinois State University
Autism Special Collection Library - University of South Florida
Lending Library of the Autism Society of Boulder County, CO
Lending Library - Book and Video Collection for Autism Spectrum Disorders and Related Issues
Videos on Autism Spectrum Disorders and Related Issues
Non English-Language Autism Resources Sites in languages other than English.
Autism Resources - Methods, Treatments, Programs A large collection of links, divided into topic categories.
The Definition and Prevalence of Autism: A Review
A Case for Neurobiological Work-up in Autism
Computer Technology and Autism
Handbook on Autism Cheryl Thacker - Masters Thesis
An assessment of some of the unorthodox forms of biomedical intervention currently being applied to autism. Paul Shattock - Autism Research Unit, University of Sunderland, UK
Autism Etiologies as an Information Mapping Problem, 1943-1996 Masters Thesis
An Experimental Analysis of Facilitated Communication Barbara B. Montee, Raymond G. Miltenberger and David Wittrock
What they aren't telling you about autism
State of the Science in Autism: Report to the National Institutes of Health
Autism, Asperger's syndrome and semantic-pragmatic disorder: Where are the boundaries? D. V. M. Bishop
Prediction of Attention in Autism from Single-Trial EEG Using Artificial Neural Networks Matthew Belmonte
NMR Intensity of Corpus Callosum Differs with Age but not with Diagnosis of Autism Matthew Belmonte, Brian Egaas, Jeanne Townsend, Eric Courchesne
Neuroanatomical and Neurophysiological Clues to the Nature of Autism Matthew Belmonte and Ruth Carper
Abnormal Attention in Autism Shown by Steady-State Visual Evoked Potentials Matthew Belmonte. Abstract, reprints available from site.
Alternatives to Behaviorism Stanley Greenspan, MD, demonstrates the superiority of relationship-based approaches to Early Intervention
Autism Awareness Campaign in Sri Lanka
ABA Resources for Recovery from Autism/PDD/Hyperlexia
ATP Informatics Portal This is from Jane Pickett's presentation. There is a tab on the welcome page – upper right – called Research Projects/Data – ATP documents are posted under Public Access.
Risperidone for autism spectrum disorder
Brain’s Fear Center Shrinks in Autism’s Most Severely Socially-Impaired
Asperger Syndrome What is Asperger syndrome?
University Students With Autism And Asperger's Syndrome
Screening and Diagnosis of Autism (PDF)
O.A.S.I.S. Online Asperger Syndrome Information & Support
MAAP Services for Autism and Asperger Syndrome
College Planning For The High Functioning Student With Autism
Autism Spectrum Disorders (Pervasive Developmental Disorders)
Autism Questions and Answers for Health Care Professionals
Autism Genetic Resource Exchange
Autism and PDD Support Network
NINDS Asperger Syndrome Information
ASPEN® - Asperger Syndrome Education Network
AAN Evidence-Based Guidelines for Use of Botulinum Neurotoxin Injections to Treat Spasticity
JAMA Patient Page on Cerebral Palsy
Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Practical Oral Care for People With Cerebral Palsy From the National Institute of Dental and Craniofacial Research
Health Care Transition for Youth with Cerebral Palsy
Prospect Designs Manufacturers of Standing Aids.
Ontario Federation for Cerebral Palsy
(PODCAST) Learn More About Cerebral Palsy From the CDC. 8:46 minutes.
1 in 278 Children Have Cerebral Palsy
United Cerebral Palsy Research and Educational Foundation
Neuro-Developmental Treatment Association Neuro-Developmental Treatment (NDT)
Uncertain Futures - Aging and Cerebral Palsy
Aging and Cerebral Palsy: Pathways to Successful Aging (pdf)
Rifton Gait trainers, standers, adaptive tricycles, special needs chairs, wheelchair desks, bath chairs, toileting aids, and other adaptive rehab products
University of Virginia:Tutorial for Cerebral Palsy
Mulholland Positioning Systems Postural support seating, standing, and walking systems for children and adults with cerebral palsy, spina bifida, and other types of motor development disorders.
The Center for Cerebral Palsy Spasticity
Taking Medications to Treat HIV/AIDS
Supportive Care Issues For Children With HIV Infection
Issues Related to HIV Transmission in Schools, Child Care, Medical Settings, the Home, and Community
HIV & Psychiatry: A Training and Resource Manual
Education of Children With Human Immunodeficiency Virus Infection
CDC: Exposure to Blood. What Healthcare Personnel Need to Know. (PDF)
Complex Issue of HIV Disclosure To Children and Adolescents in the Forefront
Camp Boggy Creek A year round camp for seriously ill children, located in Florida
Baylor International Pediatric AIDS Initiative
Rett Syndrome and Communication
News-2-You A weekly online newspaper for beginning readers and individuals with special needs.
AAC-RERC A collaborative research group dedicated to the development of augmentative and alternative communication.
Traumatic Brain Injury: Cognitive and Communication Disorders
Speech and Language Development
Low Tech Augmentative Communication Tips
Language and Communication: The Key is Effectiveness
ISAAC International Society for Augmentative and Alternative Communication
Closing The Gap Assistive Technology Resources for Children and Adults with Special Needs
Characteristics of Speech-Language Disorders
Apraxia-KIDS The Childhood Apraxia of Speech Association of North America (CASANA)
Americans with Disabilities Act Q & A: Health Care Providers
Dr. Scott Stiefel Keynote from Albuquerque Conference on May 2007
Minnesota Network presentation The presentation by the Minnesota Network during the 2007 conference in Albuquerque
Network Meeting - 2007 The network presentation given during the 2007 conference in Albuquerque.
Allison Del Bene Davis ALU and Group Home Environmental Health and Safety Assessment Tool
ATP Informatics Portal This is from Jane Pickett's presentation. There is a tab on the welcome page – upper right – called Research Projects/Data – ATP documents are posted under Public Access.
Normal People Scare Me A link to Normal Films, where you can order the film "Normal People Scare Me", shown at the 2007 conference by filmmaker Taylor Cross.
Virginia Henkels Handouts from the 2007 conference.
Dr. Stanojka Lipovac Wound care protocol - handouts from the 2007 conference. Caution - large file - 2.7mgs. A Powerpoint file.
Ruth Benjamin New Innovations handout.
Michael Willis Risk avoidance for the DD Nurse - handouts. A Powerpoint file.
Dr. Leonard Gibbs Handouts from the 2007 conference. Powerpoint file.
Dr. Jeffery Fahl The care and feeding G tube composite - collection of images - large image. 2.5mgs
Irene Zamora Handouts from the 2007 conference.
Dr. Joan Gibson and Mark Bennett Handouts from the 2007 conference.
Catherine LaRoque and Loretta Pacheco Prader-Willi handouts - a PowerPoint file. Caution - Large file - 4mgs.
Bill Gaventa Tools for Spiritual and Religious Supports for People with Disabilities and Their Families
Eddie Tuduri The Rhythmic Arts Project
Patricia Salmi Emergency Preparedness and People with Intellectual and Developmental Disabilities
Steven Thornton Epilepsy and SUDEP: An Underrecognized Complication of Epilepsy
Ned Rapp Infection Control in DD Facilities: The Problems of Hepatitis B and Drug-Resistant Microorganisms
Sandy Ott Infection Control in DD Facilities: The Problems of Hepatitis B and Drug-Resistant Microorganisms
John Pagnani Our Aging Population: Dementia and Intellectual and Developmental Disabilities
Sheldon Benjamin A Neuropsychiatric Approach to Aggressive Behavior in Persons with Intellectual and Developmental Disabilities
Carlton Horbelt Dental Considerations for Persons with Intellectual and Developmental Disabilities
Adria Hodas and Laurie Denno Hearing and Visual Impairments in Persons with Intellectual and Developmental Disabilities
Anne Hanson and Steve Zelenski A Focus on Evaluation of Behavior and Pain in Persons with Intellectual and Developmental Disabilities
Connie Frenzel Nursing Interventions and Autism
Lawrence Scahill The Use of Medications in Persons with Autism
Margaret Bauman Autism: Beyond Behavior
Jane Pickett The Etiology, Epidemiology, and Prevention of Autism: Research Findings
Jon Baio The Etiology, Epidemiology, and Prevention of Autism: Research Findings
Patricia Wright Living With Autism
Eric Tridas The Psychopharmacology of Challenging Behaviors
Leslie Rubin The Cycle of Disadvantage and Disability
Mary Elizabeth Nelson The Management of Spasticity: An Interdisciplinary Approach
Mark Nation The Management of Spasticity: An Interdisciplinary Approach
Joan Guthrie Medlen What's on Your Plate? Promoting Healthy Living for People with Down Syndrom of All Ages
Phillip May The Management of Spasticity: An Interdisciplinary Approach
Beth Marks Building Sustainable Health Promotion Programs for Persons with I/DD
Henry Hood An Interdisciplinary Approach to The Diagnosis and Management of GI Problems in Clients With Neurodevelopmental Disorders
Matthew Holder Better; Stronger; Faster: Achieving Maximum Potential in Athletes with I/DD
Kathleen Cervasio The Resiliency Wheel
Catherine Hayes Aging With Dignity: Supporting Persons With I/DD
Anne Hanson Aging With Dignity: Supporting Persons With I/DD
Judith Hersh The Gynecological Care of Women with I/DD
Joni Bosch Advancement in The Identification and Treatment of Lysosomal Storage Disorders
Nanette Wrobel (updated) Depression in Persons with I/DD
Gloria Krahn Health Disparities and Developmental Disabilities
Adadot Hayes Towards a Humanistic Health Care Model: Humanity-Based Clinical Care/Dr. Steve Zelenski Tribute Lecture
Steven Eidelman Challenges and Opportunities for Collaboration in Healthcare for Persons with I/DD
George Jesien Challenges and Opportunities for Collaboration in Healthcare for Persons with I/DD
Rick Rader (updated) Medical/Dental Procedures and Stabilization Protocols in Persons with I/DD
Rubens Pamies Individuals with I/DD as a Medically Underserved Population
Kathy Brown Overview of DD Nursing: Identifying the Health Support Needs of the Person with I/DD
James Powell To Pee or Not to Pee: That is the Question
Nancy Thaler Challenges and Opportunities for Collaboration in Healthcare for Persons with I/DD
Diane Moore (updated) Overview of DD Nursing: Identifying the Health Support Needs of the Person with I/DD
Sherrill Hayter A Collaborative Approach to End of Life Care for Individuals with Developmental Disabilities
Doreen and Lucien Canton Emergency Preparedness for the I/DD Community
Wes Matthias Nurse - Heal Thyself!
Stephanie Wincik Understanding Lesch-Nyhan Disease: A Personal Perspective
Doreen Canton Building a Mental Health Model That Works - An Ongoing Process (Consultation and Service Request)
Robin May Treatment Outcomes Assessment and How to Improve Patient Care
Janean Fossum Recognizing the Forensic Needs of Survivors with Disabilities
Seth Keller Telemedicine and Teledentistry: A Vehicle for Access
Allen Wong Telemedicine and Teledentistry: A Vehicle for Access (slide set #2)
Carolyn Graff Becoming a Leader in Environmental Health Issues Affecting Persons with I/DD: Preventing and Reducing Exposure to Toxic Chemicals
Rita Pobanz Nursing Delegation: What's It All About?
Shirley McMillan and Tom Cheetham http://www.ddna.org/downloads/2010conference/cheetham_mcmillan_3.pdf (DRAFT: Down Syndrome Health Watch Table)
Jarrett Barnhill Update on Psychopharmacological Approaches to Individuals with Autism and Related Disorders (handout)
Jack Dillenberg The Health Home - A Health Practice Model to Improve Total Health for People With Special Needs
Leonard Fischer Colonoscopy in Adults with I/DD, with Special Emphasis on Colorectal Cancer Screening and Preparation Issues (additional materials)
Denise Schuffman Choking Prevention and Altered Consistency Diets (screening tool)
Ginny Focht-New A Transformation Process: Nurses' Experience Teaching Adults with Developmental Disabilities
Robert Gettings The Implications of National Health Care Reform for Individuals with DD
Hank Chambers Cerebral Palsy and Transition: A View From Both Sides
Sharon Oxx Life in the Trenches: Examining Real-Life Medication Management Programs (handout 3)
Terry Broda An Overview of Syndromes and Conditions (websites)
John Allen Intellectual Disability and Sexual Expression
Mary DeJoseph Fetal Alcohol Spectrum Disorders: Diagnosis and Interventions
Susan Stolwyk The Health Pyramid: A Strategy for Quality Health Programming
Debra McGinness Health-Related Issues: Training of Direct Service Professionals - The Role of the Nurse Trainer
Kathleen Keating Answering the Call-Telephone Triage
Janean Fossum Diagnosis of Exclusion: Munchausen by Proxy Syndrome
David Fray/Jeffrey Okamoto Understanding Persons with Autism to Improve Clinical Outcomes
Leonard Fischer GERD and Treatment of Adults with I/DD with Proton Pump Inhibitors
Sarah Ailey/Robyn Hart A Hospital Program for Adults with I/DD
Carl Tyler High Impact Health Information
Nanette Wrobel Psychoactive Medications and Their Use in Persons with Developmental Disabilities
Kenneth Rickler The Challenge of Neuropsychiatric Diagnosis in Adults with Developmental Disabilities
Robert Fletcher The Diagnostic Manual - Intellectual Disability: Description and Clinical Application
Nanette Wrobel Pharmacology of Medications Commonly Used in the Care of Persons with Developmental Disability
Terry Broda Seizures and Syndromes, Parts 1 and 2
Diane Moore Overview of DD Nursing: Identifying the Health Support Needs of the Person with I/DD
GM1 gangliosidosis From Genetics Home Reference
Aicardi-Goutieres syndrome From Genetics Home Reference
Aicardi syndrome Genetics Home Reference
Septo-optic dysplasia From Genetics Home Reference
17q21.31 microdeletion syndrome From Genetics Home Reference
Glutamate formiminotransferase deficiency From Genetics Home Reference
22q13.3 deletion syndrome From Wikipedia
Jacobsen Syndrome From Healthline
Jacobsen syndrome From Genetics Home Reference
Miller-Dieker Lissencephaly Syndrome Madisons Foundation
22q11.2 duplication From Genetics Home Reference
Batten’s disease (juvenile form)
Batten Disease Fact Sheet From the National Institutes of Health
Juvenile Batten disease From Genetics Home Reference
WAGR syndrome From Genetics Home Reference. Wilms tumor, aniridia, genitourinary anomalies, and mental retardation syndrome (also known as WAGR syndrome)
Pallister-Killian mosaic syndrome From Genetics Home Reference
Mucolipidosis type IV From Genetics Home Reference
Donnai-Barrow syndrome From Genetics Home Reference
Spastic paraplegia type 11 From Genetics Home Reference
Autosomal dominant nocturnal frontal lobe epilepsy From Genetics Home Reference
2q37 deletion syndrome From Genetics Home Reference
Ring chromosome 20 syndrome From Genetics Home Reference
Ring chromosome 14 syndrome From Genetics Home Reference
PRISMS Support and understanding for Smith-Magenis Syndrome (SMS)
Unique Information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them
Peters plus Syndrome From Gene Reviews
Peters plus syndrome From Genetics Home Reference
Aicardi Syndrome From NINDS
Aicardi-Goutières Syndrome From Gene Reviews
Alexander Disease From Gene Reviews
Hydrocephalus From Medline Plus
L1 syndrome From Genetics Home Reference
Pelizaeus Merzbacher Brain Sclerosis From the National Organization for Rare Disorders
What is PMD (Pelizaeus-Merzbacher Disease) From the PMD Foundation
Pelizaeus-Merzbacher Disease From NINDS
Pelizaeus-Merzbacher disease From Wayne State University School of Medicine
NINDS Lesch-Nyhan Syndrome Information Page
Dopamine function in Lesch-Nyhan disease
Lesch-Nyhan Syndrome From the Cleveland Clinic
NINDS Rett Syndrome Information Page
IRSF International Rett Syndrome Foundation
Rett syndrome From Wikipedia
Angelman syndrome (AS) From Genes and Disease
Angelman syndrome From Wikipedia
Velocardiofacial syndrome (VCFS) From the National Institute on Deafness and Other Communication Disorders
Velocardiofacial Syndrome From the National Human Genome Research Institute
Five P Minus Society - Cri du Chat
Cri du Chat Syndrome From the National Human Genome Research Institute
Cri du chat syndrome From Medline Plus
Cri du chat From Wikipedia
Ornithine transcarbamylase deficiency
The A-T Children's Project Ataxia-Telangiectasia
Ataxia-telangiectasia (AT) From OMIM, John Hopkins University
22q11.2 Deletion Syndrome Includes: DiGeorge Syndrome (DGS), Velocardiofacial Syndrome (VCFS), Shprintzen Syndrome, Conotruncal Anomaly Face Syndrome (CTAF), Caylor Cardiofacial Syndrome, Autosomal Dominant Opitz G/BBB Syndrome
History of the 22q11.2 Deletion by Donna M. McDonald-McGinn, M.S. and Elaine H. Zackai, M.D.
VCFS Velo-Cardio-Facial Syndrome Educational Foundation, Inc.
Velocardiofacial Syndrome/DiGeorge Syndrome From a parent's perspective
Velo-cardio-facial Syndrome An excerpt of the book authored by Robert J. Shprintzen
Fetal Hydantoin Syndrome From Wikibooks, the open-content textbooks collection
Neurofibromatosis Type 1 (NF-1)
Nurse Training Program: Practical Considerations Related to Pharmacology and Developmental Disabilities 5 courses available
CE for Oral Health Professionals caring for persons with I/DD Two credit hours of CE, related to the NIDCR information on Developmental Disabilities and Oral Health.
Health Care Transition Training
Video-link Workshops (Ontario) Video-link workshops are available free of charge at participating locations in Ontario, Canada. Click on the links under "Video-link Workshops" for schedules, locations, and registration.
Immune Readiness Courses From the Vaccine Healthcare Centers Network. Free courses on immunology and immunizations.
NDNQI Pressure Ulcer Training 1.5 contact hours available
Culturally Competent Nursing Care: A Cornerstone of Caring No cost course, accredited for up to 9 hours through ANCC. Note: does not count towards developmental disabilities CDDN or DDC certification, but may be used towards state relicensure.
CDC - Hearing Loss CDC's information about hearing loss in children, including facts, screening and diagnosis, types of hearing loss, treatment and intervention services, data and statistics, articles, research and tracking, recommendations and guidelines, free materials, and links to other website.
Alexander Graham Bell Association
National Consortium on Deaf-Blindness Internet Resources
National Association of the Deaf
American Sign Language Browser Communication with ALS on the web
American Speech-Language Hearing Association (ASHA)
Remote Signage development to address access problems for blind individuals
Accessible Design for the Blind
Royal National Institute of the Blind
National Institute on Deafness and Other Communication Disorders
The National Consortium on Deaf-Blindness
Introduction to the Vestibular System
Independant Living Aids An online store focusing on the needs of individuals who are visually impaired or blind.
Helen Keller National Center for Deaf-Blind Youths & Adults
Guide Dog Schools for the Blind Training Programs and Services
Equipment for Deafblind People
Communication Interactions: It Takes Two
American Sign Language Resources
DDNA's Position Statement on delegation pdf
Dentistry Training Materials Powerpoint presentations.
A Caregivers Guide to Good Oral Health for Persons with Special Needs Information provided by the Special Olympics.
Administrative Issues in the Practice of Dentistry in the MR/MH Institutional Setting Self-Study Course presented by the Southern Association of Institutional Dentists
Providing Dental Care to Persons with Severe Disabilities Under General Anesthesia Self-Study Course presented by the Southern Association of Institutional Dentists
Oral Manifestation in Genetic Syndromes with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Managing Maladaptive Behaviors: The Use of Dental Restraints and Positioning Devices Self-Study Course presented by the Southern Association of Institutional Dentists
Managing Maladaptive Behaviors: The Use of Dental Sedation for Persons With Disabilities Self-Study Course presented by the Southern Association of Institutional Dentists
Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Down Syndrome: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Clinical Concerns in the Provision of Dental Care for Clients with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Mental Retardation: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Practical Oral Care for People With Down Syndrome From the National Institute of Dental and Craniofacial Research
Practical Oral Care for People With Cerebral Palsy From the National Institute of Dental and Craniofacial Research
Practical Oral Care for People With Autism From National Institute of Dental and Craniofacial Research
CE for Oral Health Professionals caring for persons with I/DD Two credit hours of CE, related to the NIDCR information on Developmental Disabilities and Oral Health.
Developmental Disabilities and Oral Health From the National Institute of Dental and Craniofacial Research
Using Personal Digital Assistants to improve self-care in oral health pdf
American Academy of Pediactrics Developmental Surveillance and Screening of Infants and Young Children
American Academy of Pediatrics
The Deparment of Developmental Services Wellness Home Page
Pediatric Environmental Health Toolkit from the Physician for Social Responsibility (PSR) website.
International Rett Syndrome Association
Screening and Assessment for HeadStart Programs Serving Infants and Toddlers
Prescreening Developmental Questionnaire
Newborn Screening Practitioner's Manual
National Technical Assistance Center on Positive Behavioral Interventions and Supports (PBIS)
National Newborn Screening Report for 2000 from The National Newborn Screening and Genetics Resource Center
March of Dimes Newborn Screening Recommendations
Genetic and Rare Conditions Site
Developmental and Sensory Approaches to Rehabilitation: from The Association For The Neurologically Disabled of Canada
2000 CDC Growth Charts: United States
Assessments for Young Children
A New Parent's Guide to Down Syndrome Information for parents with newborns who have Down syndrome
National Down Syndrome Society - Associated Conditions The National Down Syndrome Association’s website has a page that provides information about fifteen health care conditions that can affect people with Down Syndrome.
Learning About Down Syndrome From the National Human Genome Research Institute
Down Syndrome: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Practical Oral Care for People With Down Syndrome From the National Institute of Dental and Craniofacial Research
National Association for Down Syndrome
Down Syndrome Research Foundation Canadian
Down Syndrome Research and Treatment Foundation (DSRTF)
Clinicians' Guide to Physical Health Problems of Older Adults with Down Syndrome From the Ontario Association on Developmental Disabilities.
Down Syndrome: Journal Articles From the Ontario Association on Developmental Disabilities
What is Known about Physical Fitness and Down Syndrome
Feeding Dysfunction Down Syndrome Abstracts
Riverbend Down Syndrome Parent Support Group
National Down Syndrome Congress
People with Down Syndrome: Your Questions Answered (PDF)
National Down Syndrome Society: Inclusion
National Down Syndrome Society: The Heart and Down Syndrome
National Down Syndrome Society: Endocrine Conditions in Down Syndrome
National Down Syndrome Society: Early Intervention & Down Syndrome
National Down Syndrome Society: Alzheimer's Disease and Down Syndrome
National Down Syndrome Society: Locate an Affiliate
National Down Syndrome Society
The Immune System in Down Syndrome
Health Care Management of Adults with Down Syndrome (PDF)
Health Care Guidelines for Individuals with Down Syndrome
Growth Charts for Children with Down Syndrome
Gastrointestinal Problems in Children (PDF)
Frequency of Down Syndrome Per Maternal Age
Down Syndrome Health Issues: The Thyroid
Down Syndrome Health Issues: Issues of Sexuality
Down Syndrome Health Issues: Prenatal Screening
Down Syndrome Health Issues: Obstructive Sleep Apnea
Down Syndrome Health Issues: Metabolism
Down Syndrome Health Issues: Medical Aspects of School-aged Children with Down Syndrome
Down Syndrome Health Issues: Hearing Loss in Children
Down Syndrome Health Issues: Health Care Guidelines - 13 yrs to Adulthood
Down Syndrome Health Issues: Gastroesophageal Reflux
Down Syndrome Health Issues: Epilepsy
Down Syndrome Health Issues: Diseases of the Blood
Down Syndrome Health Issues: Type 1 Diabetes Mellitus
Down Syndrome Health Issues: Dental Care
Down Syndrome Health Issues: Constipation
Down Syndrome Health Issues: Clinics - International
Down Syndrome Health Issues: Clinics in the United States
Down Syndrome Health Issues: Celiac Disease
Down Syndrome Health Issues: Adults with Down Syndrome
Down Syndrome Health Issues: Atlantoaxial Instability
Dermatologic Disorders in Down Syndrome
Depression in Persons with Down Syndrome
The Importance of Breastfeeding a Baby with Down Syndrome
Breastfeeding a Baby with Down Syndrome
Amyloid Plaques and Neurofibrillary Tangles
Fetal Treatment Center, The Videos and other information about birth defects from the University of California, San Francisco.
Learning about Intellectual Disabilities and Health A web-based learning resource for medical and health care students and practitioners.
Estia Centre The Estia Centre is a training, research and development resource for those who support adults with learning disabilities and additional mental health needs.
Individuals with Disabilities Education Act (IDEA) IDEA governs how states and public agencies (in the US) provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities.
Webstreaming Education from the School of Public Health - SUNY Albany Archived broadcasts available via webstreaming.
State of West Virginia guidelines
State of California guidelines
State of Washington guidelines
State of New Mexico guidelines
State of North Dakota guidelines
State of South Dakota guidelines
District of Columbia guideline
State of New Hampshire guidelines
State of Massachusetts guidelines
State of Rhode Island guidelines
State of Connecticut guidelines
State of Pennsylvania guidelines
State of New Jersey guidelines
State of Mississippi guidelines
State of North Carolina guidelines
State of South Carolina guidelines
Chemical, Biological, Radiological and Nuclear Resource Links (CBRN)
Material Safety Data Sheets (MSDS)
International Health Regulations (IHR)
Center for Disability and Special Needs Preparedness
Pandemic Influenza: An Analysis of State Preparedness and Response Plans This Congressional Research Service report includes an analysis of state pandemic influenza plans in eight topical areas: (1) leadership and coordination; (2) surveillance and laboratory activities; (3) vaccine management; (4) antiviral drug management; (5) other disease control activities; (6)communications; (7) healthcare services; and (8) other essential services.
Ready.gov Instructional Videos These United States Department of Homeland Security (DHS) demonstration videos, part of the Ready Campaign, highlight the specific steps older Americans, individuals with disabilities and special needs, and pet owners should take to prepare for emergencies. DHS worked with the AARP, the National Organization on Disability, and The Humane Society of the United States to develop these new emergency preparedness resources.
Aging and Disability: Ending Life Well
Resources in Developmental Disabilities and Coping with Grief, Death and Dying
End-of-Life Care for Children With Terminal Illness From Nemours
Thinking Ahead: My Life at the End Advance Care Planning for People with Developmental Disabilities
Thinking Ahead: Advance Care Planning for People with Developmental Disabilities pdf. A workbook provided by the California Coalition for Compassionate Care, the Board Resource Center, and Mark Starford
Association for Death Education and Counseling
Promoting Excellence in End-of-Life Care
Center to Advance Palliative Care
American Academy of Hospice and Palliative Medicine
Do Not Resuscitate Policy From the British Columbia Association for Community Living
Seven Legal Barriers to End-of-Life Care
End-of-Life Care for a Man with Developmental Disabilities
The Geese and the Peanut Butter Chocolate Ice Cream: The Grieving Gifts to the Lexington Street Community A resource to help individuals with developmental disabilities and people who support them grieve the death of loved ones. From the Boggs Center website. (pdf)
Last Passages The purpose of the Last Passages project is to share information and promising practices to enhance end-of-life care for persons with developmental disabilities.
"Dying Retarded" The emergence of hospice patients with intellectual disabilities. by Rick Rader.
End-of-life care for a man with developmental disabilities pdf download
End-of-Life Care This international, online journal features peer-reviewed promising practices in end-of-life care, useful tools, selected bibliographies, and other resources.
The Compassionate Friends Grief Support After the Death of a Child
Problemas en Los Cromosomas del Sexo Descubiertos a Traves del Diagnostico Prenatal
Asociación Nacional de Afectados por El Síndrome del Maullido del Gato
Trastorno de Estrés Postraumático
Centro de Preparación para la Discapacidad y Necesidades Especiales
(PODCAST) Prevalencia de los trastornos del espectro autista Un minuto de salud con los CDC. 1:46
Espina Bífida .pdf
Asoc. Madrileña para el Síndrome de Prader Willi
Instituto Canguru Grupo Especializado em Doenças Metabólicas
Enfermedad de Tay-Sachs y de Sandhoff
nacersano.org From the March of Dimes
Epilepsia De la Epilepsy Foundation
Pediatric Environmental Health Specialty Units (PEHSUs)
Chemical Pollution in the U.S. that Affects Child Development and Learning pdf
University of Maryland School of Nursing's Environmental Health Education Center Keeping Nurses informed about the Environment and Health
Genes, Behavior, the Environment and Health fact sheet
Dark Side of Medicine, The From Dr. Rick Rader: "This slide presentation consists of several very inflammatory and provocative quotes made by both Nazi doctors and American physicians and statesmen. The audience is invited to guess which group is attributed to which quote. It has been an amazing tool which has exposed how "innocent" and clueless many young students and even residents are about the Dark Side of medicine."
Personhood and Intellectual Disabilities pdf
The ethics of altering children
End-of-life care for a man with developmental disabilities pdf download
Image Archive on the American Eugenics Movement
Attenuating Growth in Children With Profound Developmental Disability
FASD, Data & Statistics - NCBDDD From CDC
FASD, Treatments - NCBDDD From CDC
Fetal alcohol syndrome (Wikipedia)
Washington State Fetal Alcohol Syndrome Diagnostic & Prevention Network
Symptoms of Fetal Alcohol Spectrum Disorders
National Organization on Fetal Alcohol Syndrome
Identifying and Referring Persons with Fetal Alcohol Syndrome
The Arc: Fetal Alcohol Syndrome
CDC: Fetal Alcohol Spectrum Disorders
Handbook on Fragile X-associated Disorders
Learn More About Fragile X Syndrome From the CDC
National Fragile X Foundation, The
Fragile X Research Foundation of Canada, The
Learning About Fragile X Syndrome From the National Human Genome Research Institute
Fragile X Association of Southern California
Characteristics of Fragile X Syndrome
La Fondation Albert Costa de Beauregard
alliance22.org Familles concernées par le syndrome du chromosome 22 en anneau et assimilé (délétion 22q13).
Partners in Policy Making Self-advocacy learning website
Infection Prevention in Outpatient Setting
Recognizing and First Aid for Seizures in Older Adults
Informing Families Their Child's Disability The Informing Families Project of the National Federation of Voluntary Bodies in Ireland has developed best practice guidelines for informing families of their child’s disability and supporting families receiving this news.
Booklet on Disability Etiquette This online booklet from the American Spinal Association provides tips on the proper etiquette for how to interact with people with disabilities
DDS SafetyNet The California Department of Developmental Services provides the DDS SafetyNet website, which contains health and safety resources for individuals with developmental disabilities and their families. Much of the health and safety information is applicable for individuals who reside in all states.
Canadian Information about Air Travel for Persons with Disabilities The Canadian Transportation Agency also has information about air travel for individuals with DD, entitled “Take Charge of Your Travel: A Guide for Persons with Disabilities.”
Air Travel for People with DD Do you have clients who want or need to travel by air? The US Department of Transportation Aviation Consumer Protection and Enforcement Division has a website that provides information specifically for air travelers with disabilities. It includes travel planning, at the airport, getting on and off the plane, on the plane, and compliance procedures.
CDC Data & Statistics | Feature: Developmental Disabilities Increasing in US Data from the CDC Study “Trends in the Prevalence of Developmental Disabilities in U.S. Children 199702008 study showed that developmental disabilities (DDs) are common: about 1 in 6 children in the U.S. had a DD in 2006–2008. These data also showed that prevalence of parent-reported DDs has increased 17.1% from 1997 to 2008. This study underscores the increasing need for health, education and social services, and more specialized health services for people with DDs.
Choosing HIgh-Quality Child Care for a Child with Special Needs ChildCareAware ® is a program of the National Association of Child Care Resource & Referral Agencies (NACCRRA), partly funded by the Child Care Bureau (CCB), Office of Family Assistance (OFA), Administration for Children and Families (ACF), U.S. Department of Health and Human Services. ChildCareAware is committed to helping parents find the best information on locating high-quality child care and child care resources in their community. This brochure addresses the issues related to choosing high-quality child care for a child with special needs.
Learning Difficulties Bereavement If you are caring for someone who has a developmental disability, they will need extra support should they experience a major personal loss, such as the death of a loved one. This article entitled “Bereavement and Loss in People with Learning Disabilities” from the Oxfordshire Learning Disability NHS Trust in the United Kingdom, contains clues to unresolved grief, and practical recommendations before the loss of a loved one, both during and after bereavement and loss.
Canadian Consensus Guidelines and Tools At the 2010 conference, Dr. Thomas Cheetham and Shirley McMillan did a presentation on the Canadian Consensus Guidelines and Tools. There were many requests for access to these excellent materials and they are now available.
FDA Guidelines for Dosage Delivery Devices for Orally Ingested OTC Liquid Drug Products
Ten Tips to Prevent an Accidental Medication Overdose From the Food and Drug Administration
Gastrostomy feeding tube - pump MedlinePlus Medical Encyclopedia. Instructions for parents or caregivers on caring for the G-tube site, feeding, giving meds, and when to call the nurse or doctor.
How to Dispose of Unused Medications What do you teach people about how to safely dispose of unused medications? Here are the proper guidelines from the Food and Drug Administration
Do2Learn: Educational Resources for Special Needs JobTIPS is a free program designed to help individuals with disabilities, such as autism, explore career interests, seek and obtain employment, and successfully maintain employment. It addresses the social and behavioral differences that might make identifying, obtaining, and keeping a job more difficult for the individual. Although JobTIPS is designed for direct use by individuals with autism and other disabilities, this program (including all of the printables, assessments, and videos) is also suitable for delivery by teachers, family members, clinicians, nurses, mentors, and job coaches.
Leadership in the Developmental Disabilities Movement A new wiki has been started on Leadership in the History of the Developmental Disabilities Movement. Anyone may contribute to this wiki. It would be nice to see some information about nurses who have made significant contributions throughout history to the developmental disabilities movement.
Water Safety For Familes With Children With Special Needs
Using the Nutrition Facts Label
Seizure Medications, Pregnancy, and Breastfeeding, Neurology, December 2010
Highlights of the 2010 IDDNA Conference
How the Brain Recognizes and Processes Faces From The Society for Neuroscience
Brain Facts Ever need a good definition of parts and function of the brain? This link connects to a glossary of brain facts from the Society for Neuroscience.
Scabies Scabiesm small mites that burrow under the skin, are contagious from person-to-person and can be a problem in facilities for people with I/DD. This article presents easily understandable information for DSPs about scabies and includes links to more information for health care professionals.
Epilepsy Foundation-Seizures: Types, Triggers, Causes & Syndromes
Taking Care of Myself: A Guide for When I Leave the Hospital (pdf)
ISMP's List of Error-Prone Abbreviations, Symbols, and Dose Designations (pdf)
ISMP's List of Confused Drug Names (pdf)
National Direct Service Workforce (DSW) Resource Center
Understanding Antidepressant Medications
Historical perspectives and Constitutional obligations regarding education of the disabled
Adults with Williams Syndrome Guidelines for families and professionals
PACER Center PACER Center
Worldwide Education and Awareness for Movement Disorders
Coping With Disaster: Suggestions for Helping Children With Cognitive Disabilities
Good Practice in Learning Disability Nursing (from Dept of Health UK) - This document provides good practice guidance to support learning disability nursing to make a major contribution to the health and well-being of people with a learning disability in the future.
The Foundation for People with Learning Disabilities
Mental health nursing of adults with learning disabilities pdf
Meeting the health needs of people with a learning disability pdf
National Dissemination Center for Children with Disabilities a central source of information on disabilities in infants, toddlers, children, and youth; IDEA, which is the law authorizing special education; No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices.
Neuro-Developmental Treatment Association Neuro-Developmental Treatment (NDT)
Expanding Garden Horizons for the Physically Challenged
American Horticulture Therapy Association Information about this national organization concerned with the promotion and development of horticultural therapy as a therapeutic and rehabilitative medium for persons who are disabled.
Substance Use Disorder Treatment For People with Physical and Cognitive Disabilities Use the links on the left side of the page to navigate the article
CODI - Cornucopia of Disability Information Use the links on the left.
Disability Statistics Cornell University's Online Resource for U.S. Disability Statistics
National Center on Physical Activity and Disability (NCPAD)
South Eastern Ontario Community - University Research Alliance in Intellectual Disabilities
Ontario Association on Developmental Disabilities (OADD) The Ontario Association on Developmental Disabilities exists to support professionals and students working and pursuing careers in the field of developmental disabilities.
CARE-ID - The Canadian Association for Research and Education in Intellectual Disabilities
News-2-You A weekly online newspaper for beginning readers and individuals with special needs.
NCDDR - National Center for the Dissemination of Disability Research
Healthopedia - A Health Encyclopedia
International Rett Syndrome Association
Special Travelers Worldwide Travel Services for Children with Special Needs
National Organization for Rare Disorders Database with more than 1,150 disorders listed
Angelman Syndrome - Information for Families and Professionals
Angelman Syndrome Information Page - NINDS
The Myelin Project Hope for Multiple Sclerosis, the Leukodystrophies, and other Myelin Disorders
ABA Resources for Recovery from Autism/PDD/Hyperlexia
Association for Behavior Analysis A nonprofit professional membership organization with the mission to develop, enhance, and support the growth and vitality of behavior analysis through research, education, and practice.
Illness and Disability - GirlsHealth.gov A website created for young girls and teenagers, sponsored by The National Women's Health Information Center, U.S. Department of Health and Human Services Office on Women's Health
The Access Pass The Access Pass is for citizens or permanent residents of the United States, regardless of age, who have been medically determined to have a permanent disability. It provides access to, and use of, any Federal recreation site that charges an Entrance or Standard Amenity Fee and provides a discount on some Expanded Amenity Fees.
SERVICES DENIED: Why Women With Disabilities Aren't Screened For Cancer
Gynecological Exam for Women with Developmental Disabilities and Other Functional Limitations
Disability Resources Monthly A resource guide to additional disability related websites.
Chartbook on Women and Disability Reference on women and disability in the United States population. The book is a resource for agencies, employers, organizations, policymakers, researchers and others concerned with the relationship between gender and disability.
It Takes More Than Ramps to Solve the Crisis of Healthcare The white paper from the Rehabilitation Institute of Chicago
Culturally Competent Nursing Care: A Cornerstone of Caring No cost course, accredited for up to 9 hours through ANCC. Note: does not count towards developmental disabilities CDDN or DDC certification, but may be used towards state relicensure.
2007 Case for Inclusion Report How does your state rank?
Antipsychotic Drug Use and Death in Older Adults with Dementia
Resource links from Medline on DD related topics
Newborn Screening in Connecticut Web-based training for health care providers who care for infants and children.
Diabetes: Explainations for people with intellectual disability and their carers
Diabetes Prevention and Control Program The Massachusetts Diabetes Control Program (DPCP), which is funded by th CDC, supports and implements the following programs in order to guide its efforts to decrease the burden of diabetes in Massachusetts:
Queensland Centre for Intellectual and Developmental Disability: Diabetes
Massachusetts Health Promotion Clearinghouse Provides free health promotion materials
Evidence Lacking to Support Many Off-label Uses of Atypical Antipsychotics
Complex channels Weizmann Institute scientists discover how ion channels are organized to control nerve cell communication
Vision Therapy: A Beneficial Intervention For Developmental Disabilities
Wide Smiles: Cleft Lip and Palate Resource
Shaken Baby Syndrome (Word doc)
The Shaken Baby Alliance (Word doc)
The Sensory Processing Disorder Network
Parents of Galactosemic Children
The Maternal and Child Health Library
Jean Watson: The Theory of Human Caring
Harvard School of Public Health
Disability Solutions (PDF)
Adolescent Health Transition Project
Arginine:glycine amidinotransferase deficiency From Genetics Home Reference
X-linked creatine deficiency from Genetics Home Reference
Sepiapterin reductase deficiency From Genetics Home Reference
Alpers-Huttenlocher syndrome From Genetics Home Reference
Childhood myocerebrohepatopathy spectrum From Genetics Home Reference
Aicardi-Goutieres Syndrome Disorder Information Information about Aicardi-Goutieres Syndrome Disorder from the National Institute of Neurological Disorders and Stroke (NINDS)
Kabuki syndrome - Genetics Home Reference
Pontocerebellar hypoplasia Genetics Home Reference
Polymicrogyria Genetics Home Reference
Joubert syndrome Genetics Home Reference
X-linked lissencephaly Genetics Home Reference
Trisomy 13 Genetics Home Reference
Miller-Dieker syndrome Genetics Home Reference
Pediatric Genetics From CDC
Genetic Testing From Genetics.gov
Nonsyndromic holoprosencephaly From Genetics Home Reference
Lennox-Gastaut syndrome From Genetics Home Reference
Mucopolysaccharidosis type VII From Genetics Home Reference
Mucopolysaccharidosis type III From Genetics Home Reference
What is Neurofibromatosis? from the National Institute of Neurological Disorders and Stroke
Children with NF1 from the Children's Tumor Foundation (pdf)
About Neurofibromatosis (part 2) from the Children's Tumor Foundation, Part 2 (pdf)
About Neurofibromatosis from the Children's Tumor Foundation, Part 1 (pdf)
Learning About Down Syndrome From the National Human Genome Research Institute
Arts syndrome From Genetics Home Reference
Myoclonic epilepsy with ragged-red fibers From Genetics Home Reference
Epigenomics From the National Human Genome Research Institute
Lafora progressive myoclonus epilepsy From Genetics Home Reference
Online Mendelian Inheritance in Man
Geneclinics Information can be found under "Gene Reviews"
Smith-Magenis Syndrome For parents and researchers
Smith-Lemli-Opitz/RSH Foundation
Prader-Willi Syndrome Association, The
National Fragile X Foundation, The
Fragile X Research Foundation of Canada, The
National Association for Down Syndrome
Down Syndrome Research Foundation Canadian
Cri Du Chat Syndrome Support Group UK
Cornelia de Lange Syndrome Canadian
Cornelia de Lange Syndrome Foundation
Angelman Syndrome Society Canadian
GWA catalog A listing of genome-wide association studies that includes at least 100,000 single nucleotide polymorphisms (SNPs) in the initial stage and are organized from most to least recent date of publication, indexing from online publication if available.
House of Lords Inquiry on Genomic Medicine Visit to NIH Slides from the presentation
Cornelia de Lange syndrome from DD HealthInfo.org
Cornelia De Lange Syndrome from National Institutes of Health (NIH).
Lowe Syndrome Yale University researcher link gene to Lowe syndrome. News article in "Yale Daily News."
SACGHS U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services. (pdf)
Robinow Syndrome From the National Organization for Rare Disorders (NORD)
Robinow syndrome from Genetics Home Reference
Genetics: The Basics (pdf) From the Journal of the American Medical Association
Intellectual and Developmental Disabilities in the Genetics Era From the Ontario Association on Developmental Disabilities
European Chromosome 11 Network
Chromosome 18 Clinical Research Center Publications (and other links)
Cru cu Chat: 5P - Five P Minus Society
Mitochondrial Disorders and other syndromes
Medicaid Reference Desk Offers detailed, state-by-state information about Medicaid benefits, a glossary of terms, answers to frequently asked questions, person-centered planning resources, and a blog from the ARC's training specialist about issues related to Medicaid, self-advocacy, and person-centered planning
Grief, Loss, and End of Life Resources
U.S. State Health Departments and public health resources in each state From the CDC
Alternative Financing Programs Information Center - State Programs Provided by AbleData
Disability Secrets Information related to working with the US Social Security system
A guide to Medicare and Hospice Benefits (pdf)
Administration on Aging: The Older Americans Act
Alabama Council for Developmental Disabilities
Michigan Alliance for Families Providing Education and Resources to Families and Others Residing in Michigan
USA.gov for Nonprofits Official information and services from the U.S. government. Includes how to write a grant proposal.
The President's Committee for People with Intellectual Disabilities From the U.S. Department of Health and Human Service. Includes Medicare prescription drug coverage information and a host of valuable links.
NIDRR - National Institute on Disability and Rehabilitation Research
Culturally Competent Nursing Care: A Cornerstone of Caring No cost course, accredited for up to 9 hours through ANCC. Note: does not count towards developmental disabilities CDDN or DDC certification, but may be used towards state relicensure.
The Case for Inclusion An Analysis of Medicaid for Americans with Intellectual and Developmental Disabilities
Diabetes Prevention and Control Program The Massachusetts Diabetes Control Program (DPCP), which is funded by th CDC, supports and implements the following programs in order to guide its efforts to decrease the burden of diabetes in Massachusetts:
School-based Medicaid for Children with Disabilities PDF
Individuals with Disabilities Act
U.S. Department of Housing and Urban Development
U.S. Department of Education: Resources for the Individuals with Disabilities Education Act (IDEA)
U.S. Consumer Safety Product Commission
Social Security Administration: Working While Disabled - How We Can Help
The New Freedom Initiative (NFI)
National Institute of Neurological Disorders and Stroke
Medicare and Medicaid Services (PDF)
Medicaid State Waiver Program Demonstration Projects
International Classification of Functioning, Disability and Health
Illinois: The Assisted Living and Shared Housing Act
Genome Programs of the U.S. Department of Energy Office of Science
The Administration on Developmental Disabilities - Programs
Alternative Financing Programs Information Center - State Programs Provided by AbleData
Grants and Grant Writing From Disability Resources - links to government resources, foundations, and other private grant resources.
USA.gov for Nonprofits Official information and services from the U.S. government. Includes how to write a grant proposal.
Work Incentives for Persons with Disabilities Under the Social Security and SSI Programs
The Public School's Special Education System as an Assistive Technology Funding Source: The Cutting Edge Free booklet in PDF form
Financing Assistive Technology: Handbook for Funding
Assistive Technology Alternative Financing Programs
AbleDATA - Funding Resource Center Links to sources of funding for assistive technology
Special Olympics Health Professions Student Grants
My Health Passport My Health Passport is a document that should be completed by an individual (and/or their caregiver), to describe important aspects about their special health care needs. It is available in English and in Spanish.
Office of Developmental Primary Care, The The Office of Developmental Primary Care is a program within the Department of Family and Community Medicine at the University of California, San Francisco. It is dedicated to improving health outcomes for people with developmental disabilities across the lifespan. Dr. Clarissa Kripke, MD, FAAFP, a colleague from the American Academy of Developmental Medicine and Dentistry, is the Director of this Center. Gerri Collins-Bride, RN, MS, ANP, a member of DDNA, is the Center's Director of Training & Clinical Education.
Family Crisis Handbook A resource to families who may, at times, face various crises (pdf)
Family Emergency Quick Reference Guide (pdf)
Online Health Booklets for Persons with I/DD
Safety Alert Safety Alerts for Human Medical Products > Risperidone (Risperdal) and Ropinirole (Requip): Medication Errors - Name Confusion
Why is handwashing important? Do you need to teach and emphasize to DSPs or clients about the important of handwashing and how to wash hands properly. Here are some fun and easy to understand resources.
Oral Manifestation in Genetic Syndromes with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Down Syndrome: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Clinical Concerns in the Provision of Dental Care for Clients with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Mental Retardation: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
HIPAA Privacy Rule From the Department of Health and Human Services (HHS) Office for Civil Rights (OCR)
Screening for Colorectal Cancer
Management of constipation in patients on enteral tube feeding pdf
Institute for Safe Medication Practices
Institute for Healthcare Improvement
2008 Childhood & Adolescent Immunization Schedule
Dying from Tooth Decay Insufficient dental care affects other high-risk populations, including people with intellectual disabilities.
Patient Safety and Quality - An Evidence-Based Handbook for Nurses A comprehensive, 1,400-page, handbook for nurses on patient safety and quality—Patient Safety and Quality: An Evidence-Based Handbook for Nurses. (AHRQ Publication No. 08-0043). Links to download sections or the entire handbook.
Dentistry for the Disabled Child and Adult
Queensland Centre for Intellectual and Developmental Disability: Diabetes
JoslinEZ Start Order the Joslin EZStart Kit, a free, easy-to-use healthcare professional and patient education kit aimed at guiding insulin initiation.
Consensus guidelines for primary health care of adults with developmental disabilities
Wong-Baker FACES Pain Rating Scale Reproduction and Ordering Information
Vaccine Pneumococcal Conjugate: What You Need to Know (PDF)
U.S. Preventive Services Task Force (USPSTF)
Trichomoniasis: CDC Fact Sheet
Tetanus (PDF)
Red Cross Preparedness Programs
Poison Ivy, Oak, and Sumac Rash
Pneumococcal Polysaccharide Conjugate: What You Need to Know (PDF)
Outsmarting Poison Ivy and Its Cousins
National Safety Council: Fact Sheet Library
National Pressure Ulcer Advisory Panel (NPUAP)
National Diabetes Information Clearinghouse
National Asthma Education and Prevention Program
LATEX (Natural Rubber) in the Hospital Environment (PDF)
Hepatitis B (PDF)
Helicobacter pylori and Peptic Ulcer Disease
Guideline for Hand Hygiene in Health-Care Settings (PDF)
Glucose Meters & Diabetes Management
Food Safety U.S. Government Food Safety Information
Disability and Secondary Conditions
A Cold and The Flu: What is The Difference Between Them?
Clostridium Difficile Infections
The Clean Hands Campaign sponsored by the American Society for Microbiology
Chemical Photosensitivity: Another Reason to Be Careful in the Sun
Differences in Breast Cancer Treatment and Survival among Women with Disabilities
Breast Health Access for Women with Disabilities (BHAWD)
FDA: 'Bad Bug Book' Condensed version
Allergy to Mold, Dander, & Dust
Allergic Rhinitis from The American Academy of Allergy Asthma & Immunology
Health Care Access & People with Disabilities CDC Features
Access to Medical Care for Individuals with Mobility Disabilities From the U.S. Department of Justice
NCPAD - The National Center on Physical Activity and Disability
The Healthy Lifestyle Change Program A Pilot of a Community-Based Health Promotion Intervention for Adults with Developmental Disabilities (pdf)
A Caregivers Guide to Good Oral Health for Persons with Special Needs Information provided by the Special Olympics.
Cerebral Palsy: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Down Syndrome: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Clinical Concerns in the Provision of Dental Care for Clients with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Mental Retardation: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Individualized Health Plan Created by Roberta Rana, RN, CSN, MSN, this is a tool that can be used before, during, and after the yearly IHP Meeting.
Dying from Tooth Decay Insufficient dental care affects other high-risk populations, including people with intellectual disabilities.
Aging with Developmental Disabilities: Meeting Social and Recreation Needs
Health Promotion Can disability, chronic conditions, health and wellness coexist?
Exercise Videos From The National Center on Physical Activity and Disability
National Center on Physical Activity and Disability
Developmental Disability and Fitness
Caring for a vulnerable population Who will take responsibility for those getting a raw deal from the health care system? Author Helen P. Beange.
Health Guidelines for Adults with an Intellectual Disability (pdf)
The Origin And Nature Of Our Institutional Models
Partners in Time A self-study course that explores society's treatment of people with developmental disabilities throughout history.
Historical Construction of Developmental Disability PDF - From the Journal of Developmental Disabilities, Ontario Association on Developmental Disabilities
History of Developmental Disabilities PDF - From the Journal on Developmental Disabilities, Published by the Ontario Association on Developmental Disabilities
Reinventing the Care of Mentally Challenged Children PDF
The Disability Rights and Independent Living Movement A comprehensive look at the history of rights for persons with I/DD. From the University of California Berkeley.
Frequently asked questions about hydrocephalus
Life-threatening complications
About normal pressure hydrocephalus pdf
Hydrocephalus diagnosed in young and middle-aged adults
Making The Right Turn A Guide About Improving Transition Outcomes for Youth Involved in the Juvenile Corrections System
Restorative Justice and People with Developmental Disabilities pdf booklet from the British Columbia Association for Community Living
People with Mental Retardation in the Criminal Justice System Word doc
Under Arrest—Understanding the Criminal Justice Process
Serving Women with Developmental Disabilities: Strategies for the Justice System
First Response to Victims of Crime Who Have a Disability A handbook for law enforcement officers on how to approach and help crime victims who have alzheimer’s disease, mental illness, mental retardation or who are blind or visually impaired, deaf or hard of hearing.
A centralized approach to managing special needs offenders Correctional Service of Canada
Offenders with Developmental Disabilities Word doc
A Police Officer's Guide to Mental Retardation vs. Mental Illness
Position Statement and Recommendations made by AAMR Region II Board of Directors
Doing Justice? The Criminal Justice System and Offenders with Developmental Disabilities (pdf)
Serving Persons with MR/DD Who Are Involved with State Criminal Justice Systems
Criminal Justice Issues & People with Developmental Disabilities
Wallet Card for Disclosure to First Responders and Law Enforcers pdf
The Care and Treatment of Offenders with a Learning Disability UK based resource
Housing for People with Disabilities Report on Lack of Affordable Housing for People with DD
I am NORM “I am Norm” is a website formed by a group of young people who want to promote the acceptance, respect, and full inclusion of youth with disabilities in schools and communities.
Support Employees with Disabilities From CDC
National Inclusion Project The National Inclusion Project seeks to bridge the gap between disabled young people and the world around them by partnering with inclusion projects and bringing awareness to the benefits of inclusion.
Institute on Community Integration The Institute on Community Integration at the University of Minnesota works to improve policies and practices to ensure that all people with disabilities are valued as contributing members of society.
Inclusive Communities Inclusive Communities, presented by PBS, provides resources on how to improve the quality of life for people with mental and physical disabilities by encouraging inclusion and respect for differences.
Accomodation Ideas: Employees with Epilepsy
Access to Medical Care for Individuals with Mobility Disabilities From the U.S. Department of Justice
Protection and Advocacy systems The Protection and Advocacy (P&A) System and Client Assistance Program (CAP) comprise the nationwide (US) network of congressionally mandated, legally-based disability rights agencies.
Media dis&dat Reflections on media images of people with disabilities and disability issues...
Personal Relationships and Social Networks Facilitating the participation of individuals with disabilities into community life.
Annotated Bibliography on Community Integration Collected by the Center on Human Policy, Syracuse University
"Community For All" tool kit Resources for supporting community living.
Expanding Garden Horizons for the Physically Challenged
American Horticulture Therapy Association Information about this national organization concerned with the promotion and development of horticultural therapy as a therapeutic and rehabilitative medium for persons who are disabled.
Training Resource Network, Inc Offering resources on the full inclusion of persons with disabilities in their communities.
Society for Disability Studies (SDS)
The Disability Rights and Independent Living Movement A comprehensive look at the history of rights for persons with I/DD. From the University of California Berkeley.
Person Centered Planning pdf. Person-Centered Planning is an outward sign of the presence of respect for the value of all persons, and a way of thinking about people that respects their interests, hopes, dreams, and desires.
UMKC Institute for Human Development Goal: To conduct applied research and evaluation to advance knowledge that will enhance people's lives and the effectiveness of communities to support all its citizens.
The Council on Quality and Leadership The Council provides a continuum of services and resources that increase the effectiveness of individuals, organizations, and systems.
Special Travelers Worldwide Travel Services for Children with Special Needs
APSE: The Network on Employment
SERVICES DENIED: Why Women With Disabilities Aren't Screened For Cancer
It Takes More Than Ramps to Solve the Crisis of Healthcare The white paper from the Rehabilitation Institute of Chicago
Williams syndrome across cultures
Sensitivity to Rejection Based on Appearance Bad for Mental, Physical Health
Professional Development: Knowledge, Skills, & Abilities (KSA) from The National Collaborative on Workforce and Disability for Youth Training
Minnesota Survey of Attitudes Regarding Developmental Disabilities:1962 / 2007 pdf
TeacherNet Special Educational Needs and Disability Division
Teasing: How Parents Can Help Their Children
Students with Disabilities Preparing for Postsecondary Education
Removing Barriers to Health Care: A Guide for Health Professionals
Operation Respect: The Don't Laugh at me Program
KidsTogether - Supported Employment
The Healthy and Ready to Work initiative
Employment of People with Mental Retardation
Dr. Jean Watson's Theory of Human Caring
Disability is Natural - People First Language
Disability Etiquette - Using Words with Dignity
The Council for Exceptional Children (CEC)
The Center for an Accessible Society - The Definition of Disability
The Center for an Accessible Society
The Arc (a national organization for people with mental retardation and their families)
Lead Levels Linked with IQ Deficits
EPA: Lead in Paint, Dust, and Soil
Coalition to End Childhood Lead Poisoning
Childhood Lead Poisoning Prevention
CDC: Childhood Lead Poisoning Prevention Program
Capillary Blodd Sampling Protocol (PDF)
Blood Lead Levels: United States, 1999 - 2002
American Academy of Pediatrics: Screening for Elevated Blood Lead Levels
Arizona Center for Disability Law
Center on Human Policy, Law, and Disability Studies (CHPLDS) The Center is a network of academic programs, centers, student organizations, and affiliated faculty whose research, teaching, and advocacy seeks to promote the rights of people with disabilities locally, nationally, and globally, and to facilitate a critical examination of disability as an aspect of diversity in society.
Center on Human Policy, Law, and Disability Studies
Developmental Disabilities Assistance and Bill of Rights Act
HB 4202: Inclusive Home Design Act A bill introduced in 2007 to require all newly constructed, federally assisted, single-family houses and town houses to meet minimum standards of visitability for persons with disabilities.
Image Archive on the American Eugenics Movement
Wrightslaw Information about special education law, education law, and advocacy for children with disabilities.
The Inclusion of Disability as Grounds for Termination of Parental Rights in State Codes
Bazelon Center for Mental Health Law
Oral Manifestation in Genetic Syndromes with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Clinical Concerns in the Provision of Dental Care for Clients with Mental Retardation Self-Study Course presented by the Southern Association of Institutional Dentists
Mental Retardation: A Review for Dental Professionals Self-Study Course presented by the Southern Association of Institutional Dentists
Psychiatric Assessment of the Person With Mental Retardation
Mental Retardation: A Symptom and a Syndrome
Mental Illness in Persons with Mental Retardation
The Intermediate Care Facility for the Mentally Retarded (ICF/MR) survey
Hearing Changes in Aging People with Mental Retardation
Future Planning: Making Financial Arrangements with a Trust
Future Planning: Guardianship and People with Mental Retardation
American Association of Mental Retardation: Health Declaration (PDF)
Alzheimer's Disease and People with Mental Retardation
NINDS Sandhoff Disease Information Page
Neurological History and Physical Examination
Movement Disorders in Individuals with Developmental Disabilities
Emory Pediatric Neurology Teaching Syllabus
BAER: Brainstem Auditory Evoked Response
Autism News feeds provided by Alltop
Down Syndrome News feeds provided by Alltop
Cerebral-palsy News feeds provided by Alltop
Nursing Assessment CMS Webinar
Program in Aging and Developmental Disabilities (PADD) Learning module from the University of Rochester, Division of Neurodevelopmental and Behavioral Pediatrics
Aging: Older Adults and Their Aging Caregivers
Rehabilitation Research and Training Center (RRTC) on Aging with Developmental Disabilities
Persons with Developmental Disabilities in Old Age from Disability Digest (pdf newsletter)
Serving the Needs of People Aging with Developmental Disabilities
Aging with Developmental Disabilities: Meeting Social and Recreation Needs
Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning (pdf)
Assessments and Best Practices in Care of Older Adults
Clinicians' Guide to Physical Health Problems of Older Adults with Down Syndrome From the Ontario Association on Developmental Disabilities.
Research Promoting Healthy Aging Links to projects related to promoting health and functioning.
Uncertain Futures - Aging and Cerebral Palsy
Aging and Cerebral Palsy: Pathways to Successful Aging (pdf)
Health, Wellness and Aging with Disability
Healthy Aging - Adults with Intellectual Disabilities - Women's Health and Related Issues
Aging with developmental disabilities: Women's health issues
Alzheimer's Association Safe Return®
Individual Service Coordination for Individuals with Mental Retardation (Word doc)
Centers for Medicare & Medicaid Services: Minimum Data Sets 2.0
American Health Care Association
Aging With Developmental Disabilities: Changes in Vision
Aging with Developmental Disabilities
Medicare and Medicaid Services (PDF)
Miller-Dieker Lissencephaly Syndrome Madisons Foundation
American Association for Intellectual and Developmental Disabilities - Region 2 California/Nevada region of AAIDD
National Association of State Directors of Developmental Disabilities Services A nonprofit organization established to improve and expand public services to people with intellectual and other developmental disabilities
Disability Services ASAP (A Safety Awareness Program)
IRSF International Rett Syndrome Foundation
The A-T Children's Project Ataxia-Telangiectasia
The American Association on Intellectual and Developmental Disabilities (AAIDD)
Gift From Within A non-profit organization dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals
National Organization for Rare Disorders Database with more than 1,150 disorders listed
Autism Organizations in the US A list of organizations per state
American Hyperlexia Association
Developmental Delay Resources - DDR
AWARES - the All Wales Autism Resource
PAPA - Parents and Professionals & Autism - Northern Ireland
Society of Urologic Nurses and Associates
National Organization for Rare Disorders
National Down Syndrome Congress
National Center for Healthy Housing
National Association of School Nurses
National Association for the Dually Diagnosed
National Adult Day Services Association
Learning Disabilities Association of America
Families and Advocates Partnership for Education (FAPE)
Council for Exceptional Children
Association of University Centers on Disabilities
American Association on Intellectual and Developmental Disabilities
Your Skin – Kid’s Health Website
The Wound, Ostomy and Continence Nurses Society (wound care specialists)
Pressure Ulcer Prevention and Treatment Following Spinal Cord Injury
New York Times Health Guide: Pressure Ulcer
JAMA Patient Page: Pressure Ulcers
International Pressure Ulcer Guidelines
Society For Pain Practice Management
Pain.com/Dannemiller Memorial Educational Foundation
National Foundation for the Treatment of Pain
American Society for Pain Management Nursing
American Headache Society® (AHS)
American Chronic Pain Association
American Board of Pain Medicine (ABPM)
American Academy of Physical Medicine and Rehabilitation
American Academy of Pain Medicine (AAPM)
American Academy of Pain Management
Alliance of State Pain Initiatives
Current and Emerging Therapeutics of Autistic Disorder and Related Pervasive Developmental Disorders
Measuring the Effectiveness of Managed Care for Adults with Disabilities (PDF)
Learning About Phenylketonuria (PKU) From the National Human Genome Research Institute
Phenylketonuria From Genes and Disease
Phenylketonuria (PKU) From the National Institute of Child Health and Human Development
The University of Washington PKU Clinic
A Place of Our Own - The University of Minnesota PKU Program
Phenylketonuria: Screening and Management
Hyperphenylalaninemia (PKU) Resource Booklet for Families
Access to Medical Care: Adults wtih Physical Disabilities Watch a four-minute video about “Access to Medical Care: Adults with Physical Disabilities.”
Disability Etiquette Videos for Newsletter/Resource Page: From United Cerebral Palsy Birmingham AL. DDNA Summer newsletter X Reply Mary Alice Willis to me show details Apr 5 TRAINING VIDEOS For Persons With Disabilities Preparing to Visit Your Healthcare Provider (4:34) Learn how to plan in advance for a successful doctors visit Staying Healthy Between Doctor Visits (6:58) Learn how to care for yourself between trips to the doctor or dentist Using the Internet (6:54) Learn how to use the internet to find reliable health information For Health Care Providers Preparing To Treat (7:13) Learn how to prepare office staff to provide for a successful visit for patients with disabilities Practice Accommodations (6:29) Learn how to accommodate your practice for patients with disabilities Disability Etiquette (4:49) Consider effective communication for people with disabilities and their caregivers
Practice Accommodations Learn how to accommodate your practice for patients with disabilities
Preparing To Treat Learn how to prepare office staff to provide for a successful visit for patients with disabilities
Using the Internet Learn how to use the internet to find reliable health information
Staying Healthy Between Doctor Visits Learn how to care for yourself between trips to the doctor or dentist
Preparing to Visit Your Healthcare Provider Learn how to plan in advance for a successful doctors visit
Show Someone How the Body Works Want to know how your body works? Check out the 78 new anatomy videos on MedlinePlus. These videos show the anatomy of body parts and organ systems and how diseases and conditions affect them. They could could be used to teach direct support staff about how the body functions.
The Arc of Montgomery, Berks, and Bucks Counties
Coping with Stress (for persons with I/DD) Bruce Compas,PhD presents the Developmental Disabilities Grand Rounds "Double Jeopardy: Why It Is So Hard to Cope With Stress"
Music Therapy for Adults with I/DD This show is about music therapy for adults with developmental disabilities.
Healthcare 411 Healthcare 411 is a news series produced by the Agency for Healthcare Research and Quality (AHRQ), part of the U.S. Department of Health and Human Services. AHRQ’s mission is to improve the quality, safety, efficiency, and effectiveness of health care for all Americans. Using the latest podcasting technology, these weekly audio and video programs feature AHRQ’s latest research findings as news and informational stories on current health care topics.
How's Your News? "How’s Your News first began over ten years ago at a summer camp for adults with disabilities in Massachusetts. We were working in video class and searching for a format which could include as many people, with as wide an array of disabilities, as possible. So we began making our own news shows."
Willobrook, part 3 Geraldo Rivera reveals horrors of Willobrook
Willobrook, part 2 Geraldo Rivera reveals horrors of Willobrook
Willobrook, part 1 Geraldo Rivera reveals horrors of Willobrook
Geraldo at Large, part 6 Why hasn't state of Texas helped disabled boy brutally beaten by caretaker?
Geraldo at Large, part 5 Voice of the Retarded president and Association for Retarded Citizens director on their organizations' work
Geraldo at large, part 4 Americans speaks out about excruciatingly long wait to get help for disabled family members
Geraldo at Large, part 3 An inside look at the Geraldo Rivera Children's Residence for the disabled
Geraldo at Large, part 2 Tim Shriver on creation of Special Olympics
Geraldo at Large, part 1 Geraldo Rivera speaks with 'American Idol' Clay Aiken about his involvement with America's disabled
DDNA's Position on Medication Management for Individuals with I/DD
Resources: Position Paper of the National Association of School Nurses on Use of Diastat
American Association on Intellectual and Developmental Disabilities (AAIDD) Position Statements
World Health Organization (WHO) Healthy Ageing - Adults with Intellectual Disabilities
US Surgeon General Health Disparities and Mental Retardation
Special Olympics Link to many policy papers from the Special Olympics
State of Washington, Department of Social and Health Services Health Issues For Individuals With Developmental Disabilities
U.S. Department of Health and Human Services Interdisciplinary Education and Training of Professionals Caring for Persons with Disabilities: Current Approaches and Implications for a Changing Health Care System
AAP Policy A Consensus Statement on Health Care Transitions for Young Adults With Special Health Care Needs
Prader-Willi Syndrome Association, The
Prader-Willi syndrome From Wikipedia
Prader-Willi Syndrome American Family Physician (journal)
International Prader-Willi Syndrome Organization
Yale Child Study Center Clinic for Genetic Forms of Developmental Disorders Program for Autism, Prader-Willi Syndrome, and Williams Syndrome
Prader-Willi Syndrome Association - United Kingdom
Prader-Willi Syndrome Association
Medical Alert: Important Considerations For Routine Or Emergency Treatment
Imagine... what it would be like if you were born with Prader-Willi Syndrome.
How to Write Effective Contracts for PWS
House Rules Approved and adopted by Tucson Residence Foundation for PWS-Specific House
Family Dynamics: Relationships Within the Family
The Dining Room: Recipes, Menu Plans, Diet Guidelines for PWS from the Prader-Willi Syndrome Arizona Association
U.S. Department of Health and Human Services: Prenatal Care
Prevention of Neural Tube Defects (Word doc)
Prenatal Cocaine Exposure: NIDA Studies Clarify Developmental Effects
Pregnancy and the Drug Dilemma
Folic Acid for the Prevention of Neural Tube Defects
Taking your child to a therapist
Gift From Within A non-profit organization dedicated to those who suffer post-traumatic stress disorder (PTSD), those at risk for PTSD, and those who care for traumatized individuals
Rett Syndrome: Treatment for Anxiety
Psychiatric Times Searchable database of articles.
Psychiatric Assessment of the Person With Mental Retardation
Post-Traumatic Stress Disorder
Obsessive-Compulsive Disorder (OCD)
Multimodal Functional Behavioral Assessment
Mental Health Aspects of Developmental Disabilities
Mental Illness in Persons with Mental Retardation
Journal of Early and Intensive Behavior Intervention
Inclusion Daily Disability Rights news. Paid subscription, though there is a free two week trial.
Robert Wood Johnson Foundation: Publications and Resources
Ragged Edge and The Disability Rag
Publications from The Arc A collection of publications in PDF format.
Journal of the American Academy of Child and Adolescent Psychiatry
IMPACT A publication of the Institute on Community Integration (UCEDD) and the Research and Training Center on Community Living, College of Education and Human Development, University of Minnesota
The Gram Newsletter The Learning Disabilities Association of California's (LDA-CA's) quarterly newsletter
Responsive Neurostimulation for Refractive Partial Epilepsy
VNS Therapy Vagus Nerve Stimulation is a non-drug treatment option that offers a unique safety profile and mechanism of action.
Can epilepsy patients predict their seizures?
New Guideline for the Diagnostic Assessment of Children with Continuous Seizures
Pathways to Independence Natural Supports Project The goal of the Pathways to Independence Natural Supports project is to discover, support, and disseminate creative and promising approaches for supporting youth with disabilities to participate more fully and naturally in school, work, and community activities. In 2007–2008 they offered mini‐grant packages comprised of funding, ongoing technical assistance, and practical resources, to increase the capacity of schools and communities to support youth with disabilities in accessing school and community opportunities that lead to the same relationships, work- and volunteer-related experiences, and community opportunities as their peers. Funded by the Wisconsin Medicaid Infrastructure Grant through the Department of Health and Family Services Office of Independence and Employment and implemented through the Waisman Center, this project is designed to draw out the very best ideas and approaches for enhancing the full participation of youth with disabilities.
National Gateway to Self-Determination This is the Gateway to Self-Determination Web Portal, a clearinghouse on resources, training, and information on Self-Determination. This site provides a single access for self-advocates, professionals, policy-makers and the general public on the current best practices and evidence-based activities in enhancing self-determination in the lives of people with developmental and intellectual disabilities, as well as any individual. The site is part of an Overview of National Training Initiative on Self-Determination, which is funded by the Administration on Developmental Disabilities (ADD). Leadership of the National Training Initiative is comprised of representatives from five University Centers for Excellence in Developmental Disabilities (UCEDD), also funded by ADD.
Taking Care of Myself: A Guide for When I Leave the Hospital (pdf)
Independent Living Institute A not-for-profit private foundation run and controlled mainly by persons with disabilities.
Center for Self-Determination (CSD)
Vision Audio - Ease CD Electronic Auditory Stimulation Effect CD. Claims to achieve the same results as auditory integration therapy for PDD children. Non-profit organizations treating brain-injured children can get a free cd.
PleasureAble: Sexual Device Manual For Persons with Disabilities
Sexuality Education for Children and Adolescents With Developmental Disabilities pdf
Sexuality of Children and Adolescents With Developmental Disabilities
Discrimination, Sexuality and People with Significant Disabilities pdf
Social Stories for Sexuality Education for Persons with Autism/Pervasive Developmental Disorder from Springer Science+Business Media
Learning to Savor a Full Life, Love Life Included an article from The New York Times
Plain Talk About Sex and Mental Retardation
Women with disabilities: Reproductive Health
Sterilization of Minors With Developmental Disabilities
Sexuality & Disability Webliography (PDF)
Sexuality and Disability: An Annotated Bibliography
People with Intellectual Disabilities and Sexual Violence (Word doc)
Genital HPV Infection: CDC Fact Sheet
Genital Herpes: CDC Fact Sheet
Bacterial Vaginosis: CDC Fact Sheet
AAMR and The Arc: Position on Sexuality
Bright Beacon Bright Beacon exists to provide a safe haven for parents of children with medical needs to meet, discuss their children, their children's medical needs, and perhaps even their own personal stories: their victories, defeats, joys and sorrows.
Information about Assistive Devices from the National Library of Medicine
Cooking Made Easy The cookbook that helps people cook independently.
Prospect Designs Manufacturers of Standing Aids.
Rifton Gait trainers, standers, adaptive tricycles, special needs chairs, wheelchair desks, bath chairs, toileting aids, and other adaptive rehab products
Pediatric Physical Therapy Standers, walkers, gait trainers, forearm crutches, and positioning devices.
Kaye Products Manufactures and sells mobility aids, adaptive positioning equipment and therapy products for infants, children and young adults with special needs.
Equipment Manufacturers For the Disabled
Enabling Devices Affordable assistive and learning devices for the physically challenged
Equipment for Deafblind People
Mulholland Positioning Systems Postural support seating, standing, and walking systems for children and adults with cerebral palsy, spina bifida, and other types of motor development disorders.
Common Objects Containing Latex and Alternatives
Spina Bifida, Facts - NCBDDD From the CDC
Spina Bifida From Medline Plus
Spina Bifida (Myelomeningocele) - From UCSF A collection of videos and information from the University of California, San Francisco.
Prospect Designs Manufacturers of Standing Aids.
Self Catheterization (Clean Technique): Females
The School Nurse: Coordinating Spina Bifida Care
Medline Plus: Neural Tube Defects
NINDS Encephaloceles Information
Children with Spina Bifida: A Resource Page for Parents
Association for Spina Bifida and Hydrocephalus
Rifton Gait trainers, standers, adaptive tricycles, special needs chairs, wheelchair desks, bath chairs, toileting aids, and other adaptive rehab products
Mulholland Positioning Systems Postural support seating, standing, and walking systems for children and adults with cerebral palsy, spina bifida, and other types of motor development disorders.
Spirituality in Persons with I/DD Between 2002 and 2004, two professors from the University of Aberdeen conducted research with people with learning disabilities about their spirituality. They asked them about what gives meaning in their lives. This booklet is based on what they were told in interviews and focus groups and is directed at caregivers.
Resource Packet on Disability, Spirituality, and Healing
Anabaptist Disabilities Network
The Daniel Project This project is to provide tools for people in congregational ministry that hope to address the ministry needs of individuals with special needs and their families.
Faith and Light Community Faith and Light is an international movement located in 75 countries on 5 continents comprising more than 1350 communities. This spiritual movement supports persons with developmental disabilities, their families and friends.
Incorporating Disabled Children into the life of the Spiritual Community
Aspirational Standards of Practice
Facing Disability for Families Facing Spinal Cord Injuries Facing Disability is a web resource with more than 1,000 videos drawn from interviews of people with spinal cord injuries, their families, caregivers, and experts.
Miller-Dieker Lissencephaly Syndrome Madisons Foundation
Mencap UK charity for people with a learning disability and their families
UK Cri Du Chat Syndrome Support Group
Chromosome Disorder Outreach, Inc
MakingContact.org A forum for families wishing to make contact with other families in the I/DD community.
MACPAD The Mid-Atlantic Connection for PKU and Allied Disorders, Inc
MUMS National Parent-to-Parent Network
Five P Minus Society - Cri du Chat
Best Buddies The mission of Best Buddies is to enhance the lives of people with intellectual disabilities by providing opportunities for one-to-one friendships and integrated employment
Online Discussion: mailing lists, etc
Women With Disabilities Australia (WWDA)
Through the Looking Glass TLG is a disability community based nonprofit organization.
DisAbled Women's Network Ontario Canadian Network
Sibshops Siblings of Children with Special Health and Developmental Needs
Riverbend Down Syndrome Parent Support Group
Family Voices National network of families and friends which advocates for health care services and provides information for families with children and youth with special health care needs.
The Family Village Information and resources for persons with cognitive and other disabilities, their families, and those that provide services and support.
Resource links for H1N1 (swine flu) From Immunization Action Coalition
H1N1 Flu (Swine Flu): General Information From the Centers for Disease Control
Tay-Sachs Disease From Medline Plus
NINDS Tay-Sachs Disease Information
National Tay-Sachs & Allied Diseases Association
March of Dimes: Tay-Sachs Disease
DJ'S Homepage One Family's Story
Transition from Pediatric to Adult Services from Children's Medical Services This booklet published by Children’s Medical Services entitled “When You’re 18 You are in Charge of Your Health” is a health care transition guide for young adults with special needs. It includes new rights and responsibilities, being an adult with special health care needs, staying healthy, being in charge of your own health, talking with doctors and other health care professionals, getting answers (and ask and keep on asking).
Adolescent Healthcare Transition Program From The Rhode Island Department of Health
Transition to Adult Health Care: pdf
Health Care Transition Training
Sexuality Education for Children and Adolescents With Developmental Disabilities pdf
Transition to Independence Process (TIP)
The 411 on Disability Disclosure pdf
Talking With Your Doctor This 18 minute video teaches teens how communicate effectively with health care providers so that they answer teens' questions and give the information and supports teens need to be more in charge of their own health.
What’s Health Got To Do with Transition? pdf. Curriculum for teachers. From the University of South Florida
Health care transition From the Florida Developmental Disabilities Council
Implementing Transitions for Youth With Complex Chronic Conditions Using the Medical Home Model pdf
Eliminating Health Disparities for Individuals with Mental Retardation and Other Developmental Disabilities From AADMD. pdf
Long Term Effects of Severe Brain Injury in Children
TBI Prevention in Children and Teens Heads Up to Clinicians About TBIs: Addressing Concussion in Sports Among Kids and Teens, an online course for health-care professionals
Children and Brain Injury - BIAA
CDC: Injury Prevention and Control - Traumatic Brain Injury
Brain Injury Association of America
Tuberous Sclerosis Complex From Gene Reviews. Funded by the NIH
Tuberous sclerosis complex (TSC) From OMIM, Johns Hopkins University
Tuberous Sclerosis (Wikipedia)
Brain Imaging in Tuberous Sclerosis (PDF)
Tuberous Sclerosis Association: Information for Nurses (PDF)
Autism Conferences in the U.S. and Canada