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 vkc.vumc.org/vkc/resources/tipsheets/. Accessed July 2021.
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. Available at https://flfcic.cbcs.usf.edu/health.html Accessed July 2021.
- Human Development Institute at University of Kentucky. Pre-service training for medical students. Available at https://hdi.uky.edu/training/preservice-health Accessed July 2021.
- American Academy of Developmental Medicine and Dentistry. Training webinars. Available at https://www.aadmd.org/webinars. Accessed July 2021.
- 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. Available at http://www.iddhealthtraining.org/. Accessed July 2021.
- Americans with Disabilities Act. Guidelines for physicians’ offices. Available at
http://www.ada.gov/medcare_mobility_ta/medcare_ta.htm#part1. Accessed July 2021.
- Bridges4Kids. Your next patient has autism. Available at http://bridges4kids.org/Disabilities/YourNextPatient.pdf. Accessed July 2021.
- 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. Available at http://fpg.unc.edu/sites/fpg.unc.edu/files/resources/other-resources/NCODH_ProvidersGuide.pdf. Accessed July 2021.
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. Available at https://www.mayoclinicproceedings.org/article/S0025-6196(13)00371-6/fulltext Accessed July 2021.
- National Task Group on Intellectual Disabilities and Dementia Practices Screening Instruments. Available at https://www.the-ntg.org/. Accessed July 2021.
- American Congress of Obstetricians and Gynecologists. Six Powerpoint presentations on health care for women with disabilities. Accessed October 2020.
Women with Disabilities
- Villanova University College of Nursing. Training videos for nurse practitioners caring for individuals with IDD. Accessed October 2020:
The Nurse Practitioner Tool Kit
- The American Association on Intellectual and Developmental Disabilities. Webinars on behavioral health, diagnosis, and health care for adults with intellectual and developmental disabilities. Accessed October 2020:
AAIDD Video Library
Resources for providers, patients and families:
- The Center for Dignity in Healthcare for People with Disabilities. Available at https://centerfordignity.com/. Information located under “subcommittees” includes recommendations for mental health and suicide prevention, decisions regarding organ transplantation, prenatal diagnostics and end-of-life and palliative care. The center also includes a user’s guide entitled “Help! I Need a Therapist!”, https://centerfordignity.com/help-i-need-a-therapist-guide/. Accessed October 2022.
- The National Center for Health Care Transition Improvement. Available at www.gottransition.org/. Accessed July 2021.
- Wyoming Institute on Disabilities. A 22-page booklet for women with developmental disabilities about breast health, self-exams and mammography. Accessed October 2020. Women First: Breast Health for Women with Developmental Disabilities.
- These booklets, created by the Vanderbilt Kennedy Center LEND program, focus more on adolescents, but they may be useful with some older individuals. Accessed October 2020.
Healthy Bodies-Girls-Appendix (with visual supports)
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. www.supporteddecisionmaking.org. For Tennessee-specific information, see the Tennessee Council on Developmental Disabilities.
- Report on improving care for populations disproportionately affected by Alzheimer’s disease and other dementias. Accessed October 2020. Alzheimer’s Task Force Report
- 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. Accessed October 2020. Autism Speaks toolkits
- Norwood Jr. K, Slayton RL. Oral Health Care for Children with Developmental Disabilities. Available at http://pediatrics.aappublications.org/content/early/2013/02/20/peds.2012-3650.full.pdf+html. Accessed July 2021.
- Information about the higher rates of smoking among people with disabilities and how to help them quit: https://tobaccofreelife.org/resources/smoking-adults-disabilities/ Accessed July 2021.
- Information for professionals and families about caring for children and youth with special health care needs and about relevant local service providers in several states (currently including Utah, Idaho, Montana, New Mexico, Nevada and Rhode Island): http://www.medicalhomeportal.org Accessed July 2021.
- Information for professionals and caregivers about aging, dementia and Alzheimer’s disease in people with intellectual disabilities: https://aadmd.org/ntg
- American Academy of Pediatrics provides insight on practice-based implementation of medical transition from adolescence to adulthood: https://pediatrics.aappublications.org/content/128/1/182
- 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.
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: https://centerforstartservices.org/IDD-MH-Prescribing-Guidelines
Resources related to specific conditions
Autism websites that may be helpful for families, individuals and caregivers
- The Autism Society of America: www.autism-society.org
- Autism Speaks: www.autismspeaks.org
- Academic-Autistic Spectrum Partnership in Research and Education’s Health Care Toolkit: http://autismandhealth.org/
- Surrey Place Centre Health Watch Table-Autism Spectrum Disorder: http://ddprimarycare.surreyplace.ca/wp-content/uploads/2018/03/HWT_ASD.pdf
- The Medical Home Portal’s Diagnosis Information for Autism Spectrum Disorder: http://www.medicalhomeportal.org/diagnoses-and-conditions/autism-spectrum-disorder
- The AASPIRE Healthcare Toolkit has information and worksheets for adults on the autism spectrum, their supporters, and health care providers: https://autismandhealth.org/
- Autism Speaks: Autism-Related Guidelines for Physical and Mental Healthcare Providers: https://www.autismspeaks.org/science-news/autism-related-guidelines-healthcare-providers
Down syndrome websites
- National Down Syndrome Society: www.ndss.org
- National Down Syndrome Congress: ndsccenter.org
- Canadian Down Syndrome Society: www.cdss.ca
- Global Down Syndrome Foundation: www.globaldownsyndrome.org
- Down Syndrome Education International: www.downsed.org
- Down Syndrome: Health Issues by Dr. Len Leshin: www.ds-health.com
- Down Syndrome Medical Interest Group: www.dsmig.org.uk
- Understanding Aging in Down Syndrome: A First Step:
A Research Report
- The Medical Home Portal’s Diagnosis Information for Down Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/down-syndrome
- Managing the Care of Adults with Down Syndrome, PubMed: https://www.bmj.com/content/349/bmj.g5596.long
- Growth Charts for Children with Down Syndrome: https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/growth-charts.html
- Caregiver Guidebook for Individuals with Down Syndrome and Alzheimer’s Disease: http://www.ndss.org/about-down-syndrome/publications/caregiver-guide-order-form/
Fragile X syndrome websites
- FRAXA Research Foundation: www.fraxa.org
- The National Fragile X Foundation: www.fragilex.org
- Fragile X Research Foundation of Canada: www.fragilexcanada.ca
- The Medical Home Portal’s Diagnosis Information for Fragile X Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/fragile-x-syndrome
Prader-Willi syndrome websites
- Prader-Willi Syndrome Association USA: www.pwsausa.org/
- Prader-Willi Syndrome Network (Ontario): www.pwsnetwork.ca
- Pittsburgh Partnership, specialists in Prader-Willi Syndrome: www.pittsburghpartnership.com
- Foundation for Prader-Willi Research: www.fpwr.org/about-foundation-prader-willi-research/
- The Medical Home Portal’s Diagnosis Information for Prader-Willi Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/prader-willi-syndrome
Williams Syndrome websites
- Canadian Association for Williams Syndrome: https://www.williamssyndrome.ca/
- The Williams Syndrome Association (WSA) (USA): www.williams-syndrome.org
- Williams Syndrome Association: www.williams-syndrome.org/doctor/adult-medical-issues
- Williams Syndrome Foundation (UK) – Clinical guidelines
- Williams Syndrome clinics in different states: https://williams-syndrome.org/parent/williams-syndrome-clinics
22q11.2 Deletion syndrome websites
- Chromosome 22 Central: www.c22c.org
- International 22q11.2 Foundation: www.22q.org
- The Medical Home Portal’s Diagnosis Information for 22q11.2 Deletion Syndrome: https://www.medicalhomeportal.org/living-with-child/diagnoses-and-conditions—faqs/22q11.2-deletion-syndrome
- UCDavis Health Deletion Syndrome Resource Guide: https://health.ucdavis.edu/mindinstitute/resources/22q11.2_deletion_syndrome.html
Other genetic or related conditions
- The Society for the Study of Behavioural Phenotypes: www.ssbp.org.uk
- The Online Mendelian Inheritance in Man is a compendium of human genes and genetic phenotypes: www.ncbi.nlm.nih.gov/omim
- GeneTests is a medical genetics information resource developed for physicians, genetic counselors, other healthcare providers, and researchers: www.genetests.org
- Turner Syndrome Society of the U.S.: http://turnersyndrome.org/
- Spina Bifida Association: www.spinabifidaassociation.org
- United Cerebral Palsy: http://ucp.org/
- The Medical Home Portal’s Diagnosis Information for Angelman Syndrome: https://www.medicalhomeportal.org/living-with-child/diagnoses-and-conditions—faqs/angelman-syndrome
- The Medical Home Portal’s Diagnosis Information for Cerebral Palsy: http://www.medicalhomeportal.org/diagnoses-and-conditions/cerebral-palsy
- The Medical Home Portal’s Diagnosis Information for Intellectual Disability: https://www.medicalhomeportal.org/diagnoses-and-conditions/intellectual-disability-and-global-developmental-delay
- The Medical Home Portal’s Diagnosis Information for Spina Bifida: http://www.medicalhomeportal.org/diagnoses-and-conditions/spina-bifida
- The Medical Home Portal’s Diagnosis Information for Turner Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/turner-syndrome/description
- Rare Chromosome Disorder Support and Information: https://www.rarechromo.org/