IDD Toolkit Overview Fliers
Tips and Resources Fact Sheets
Produced for the IDD Toolkit
- My Medical Appointment Evaluation
(for Individuals with Disabilities) - Going to the Doctor
(for Individuals with Disabilities) - Health Care for Adults with Disabilities
(for Primary Care Physicians and Nurses) - Accompanying an Individual to the Doctor
(for Direct Support Professionals and Other Caregivers) - Accompanying an Individual to the Doctor – Spanish translation
(for Direct Support Professionals and Other Caregivers) - Helping an Adult with Intellectual/Developmental Disability Prepare for a Sleep Study
Tips and Resources are offered on the science of specific disabilities, the effects disabilities might have on the individual and family, and treatment and service options. Produced by Vanderbilt Kennedy Communication and Dissemination services. See tipsheets.vkcsites.org.
Informational Resources for primary care providers and their staff
(Link to State and Local Resources)
- Tyler C, Baker S. Intellectual Disabilities at your Fingertips: A Health Care Resource. New Lenox, IL: High Tide Press; 2009.
- McCreary BD and Jones J. Developmental Disabilities and Dual Diagnosis: A Clinical Guide for Healthcare Professionals of All Disciplines. Montreal, Quebec/Kingston, Ontario, Canada: McGill-Queen’s University Press. 2013.
- Lennox N, Boocock H, et al. Management Guidelines: Developmental Disability, Version 3. West Melbourne, Victoria, Australia: Therapeutic Guidelines. 2012.
- Deb S, Kwok H, Bertelli M. International guide to prescribing psychotropic medication for the management of problem behaviours in adults with intellectual disabilities. World Psychiatry. 2009; 8: 181-186
- Florida Center for Inclusive Communities, University of South Florida. Health care fact sheets and webinars.
- Thomas Jefferson University. Increasing Access to Quality Healthcare for People with Disabilities. Each of the five online learning modules takes about an hour and covers topics from completing a physical exam to mental health, to resources and interdisciplinary care, with real patient stories. The project is funded by the Pennsylvania Developmental Disabilities Council.
- Special Olympics International. Online training for health care providers on IDD, including the Inclusive Health Fundamentals (covering definitions, models of disability, health promotion, communication, and common physical and mental health care needs), as well as clinical topics such as life transitions and medical nutrition therapy.
- Georgia State University School of Public Health and the Southeast ADA Center. Online training Nursing Guide to the Americans with Disabilities Act (ADA).
- Human Development Institute at University of Kentucky. Pre-service training for medical students.
- American Academy of Developmental Medicine and Dentistry Training Webinars.
- Westchester Institute for Human Development and the HealthMeet Project of the Arc. Case-based training modules; each case is revealed sequentially, with questions to follow.
- Americans with Disabilities Act. Guidelines for physicians’ offices.
- Bridges4Kids. Your next patient has autism.
- Frank Porter Graham Child Development Institute, University of North Carolina-Chapel Hill. A provider’s guide to care for women with physical disabilities and chronic health issues.
- Moran J, Rafii M, Keller S, Singh B, Janicki M. National Task Group guidelines for dementia in people with IDD. Mayo Clinic Proceedings. 2013; 88 (8) 831-840.
- National Task Group on Intellectual Disabilities and Dementia Practices Screening Instruments.
- Villanova University College of Nursing. Training videos for nurse practitioners caring for individuals with disabilities. The Nurse Practitioner Tool Kit.
- The American Association on Intellectual and Developmental Disabilities (AAIDD) video library. Webinars on behavioral health, diagnosis, and health care for adults with intellectual and developmental disabilities.
Resources for providers, patients and families:
- This is a brief form for a physical health check by a primary care provider created to meet basic Medicare guidelines. Please note this Word file may auto download to your desktop.
- There is a user’s guide entitled “Help! I Need a Therapist!”
- The National Center for Health Care Transition Improvement.
- These booklets, created by the Vanderbilt Kennedy Center LEND program, focus more on adolescents, but they may be useful with some older individuals.
Healthy Bodies-Girls
Healthy Bodies-Girls-Appendix (with visual supports)
Healthy Bodies-Boys
Healthy Bodies-Boys-Appendix (with visual supports) - Supported decision-making is an effort to give people with disabilities the opportunity to make more choices in their lives, including health care decisions. The National Resource Center on Supported Decision Making offers a wealth of information. For Tennessee-specific information, see the Tennessee Center for Decision-Making Support.
- Autism Speaks has several toolkits that address medical issues, including blood draws, constipation, sleep issues and challenging behaviors that may be useful for various developmental disabilities.
- Obeidat, R., Noureldin, A., Bitouni, A. et al. Oral health needs of U.S. children with developmental disorders: a population-based study. BMC Public Health 22, 861 (2022).
- Information about the higher rates of smoking among people with disabilities and how to help them quit.
- National Task Group on Intellectual Disabilities and Dementia Practices. Information for professionals and caregivers about aging, dementia and Alzheimer’s disease in people with intellectual disabilities.
- Tennessee Disability Coalition’s Brain Links program offers a fact sheet on “Recognizing Concussion in People Who Communicate Without Words” in English and Spanish versions.
- Cardea Services has created a digital booklet focused on self-advocacy titled “Healthcare Self-Advocacy Tools for Women of Color with Intellectual & Developmental Disabilities.”
- Cardea Services also created a provider resource packet titled Advancing Disability Justice in Public Health: Centering Women of Color with Intellectual and Developmental Disabilities, which offers information about ableism and barriers to health care for women of color with IDD.
Resources related to Mental and Behavioral Health
- The Center for START Services, which focuses on the mental health aspects of intellectual and developmental disabilities, has issued “Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities.”
- The Suicide Prevention for Autism Neuro-affirming Toolkit (span.toolkit) is a free, evidence-based resource portal co-developed by the Olga Tennison Autism Research Centre at La Trobe University in Australia in partnership with lived experience and health care experts. It provides autism-adapted tools and neuro-affirming guidance to support health care professionals in identifying and responding to suicidal thoughts and behavior in autistic adults.
- The Arc of the U.S. has an excellent tip sheet, Suicide Prevention and People With IDD: What You Need to Know.
- The Link Center works to improve supports for children and adults with intellectual and developmental disabilities, brain injuries, and other cognitive disabilities who also experience mental health conditions. The center offers resources, shared learning groups, and special projects.
Resources related to specific conditions
Autism websites that may be helpful for families, individuals, and direct support staff
- The Autism Society of America
- Autism Speaks
- The AASPIRE Healthcare Toolkit has information and worksheets for adults on the autism spectrum, their supporters, and health care providers
- Autism Speaks: Autism-Related Guidelines for Physical and Mental Healthcare Providers
Down syndrome websites
- National Down Syndrome Society
- National Down Syndrome Congress
- Canadian Down Syndrome Society
- Global Down Syndrome Foundation
- Down Syndrome Education International
- Down Syndrome Clinic to You offers personalized treatment plans for Down syndrome patients from a team at Massachusetts General Hospital/Harvard Medical School to help caregivers and primary care physicians around the globe.
- Down Syndrome: Health Issues by Dr. Len Leshin
- Down Syndrome Medical Interest Group
- Understanding Aging in Down Syndrome: A First Step
- Managing the Care of Adults with Down Syndrome, PubMed.
- Growth Charts for Children with Down Syndrome
- Caregiver Guidebook for Individuals with Down Syndrome and Alzheimer’s Disease
- Primary Care Provider’s Guide to Women’s Health and Down Syndrome
Fragile X syndrome websites
Prader-Willi syndrome websites
- Prader-Willi Syndrome Association USA
- Prader-Willi Syndrome Network (Ontario)
- Pittsburgh Partnership, specialists in Prader-Willi Syndrome
- Foundation for Prader-Willi Research
Williams syndrome websites
- Canadian Association for Williams Syndrome
- The Williams Syndrome Association (WSA) (USA)
- Williams Syndrome Association
- Williams Syndrome clinics in different states
22q11.2 Deletion syndrome websites
Other genetic or related conditions
- The Online Mendelian Inheritance in Man is a compendium of human genes and genetic phenotypes.
- GeneReviews is a medical genetics information resource developed for physicians, genetic counselors, other health care providers, and researchers.
- Turner Syndrome Society of the U.S.
- Spina Bifida Association
- International Rett Syndrome Foundation: Comprehensive Care Guidelines
- United Cerebral Palsy
- Rare Chromosome Disorder Support and Information
Each website was accessed in September 2026.