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. Accessed February 2024.

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 February 2024.
• Human Development Institute at University of Kentucky. Pre-service training for medical students. Available at https://hdi.uky.edu/training/preservice-health Accessed February 2024.
• American Academy of Developmental Medicine and Dentistry. Training webinars. Available at https://www.aadmd.org/webinars. Accessed February 2024.
• 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 February 2024.
• Americans with Disabilities Act. Guidelines for physicians’ offices. Available at
  http://www.ada.gov/medcare_mobility_ta/medcare_ta.htm#part1. Accessed February 2024.
• Bridges4Kids. Your next patient has autism. Available at http://bridges4kids.org/Disabilities/YourNextPatient.pdf.   Accessed February 2024.
• 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 February 2024.
• 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 February 2024.
• National Task Group on Intellectual Disabilities and Dementia Practices Screening Instruments. Available at https://www.the-ntg.org/. Accessed February 2024.
• American Congress of Obstetricians and Gynecologists. Six PowerPoint presentations on health care for women with disabilities. Accessed February 2024.
  Women with Disabilities
• Villanova University College of Nursing. Training videos for nurse practitioners caring for individuals with IDD. Accessed February 2024.
  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 February 2024.
  AAIDD Video Library

Resources for providers, patients and families:

• The National Center for Disability, Equity, and Intersectionality. Available at https://thinkequitable.com/.. Accessed in February 2024. The center also includes a user’s guide entitled “Help! I Need a Therapist!”, https://thinkequitable.com/help-i-need-a-therapist-guide/. Accessed February 2024.
• The National Center for Health Care Transition Improvement. Available at www.gottransition.org/. Accessed February 2024.
• Wyoming Institute on Disabilities. A 22-page booklet for women with developmental disabilities about breast health, self-exams and mammography.  Accessed February 2024. 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 February 2024.
  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. www.supporteddecisionmaking.org.   Accessed February 2024. For Tennessee-specific information, see the Tennessee Center for Decision-Making Support. https://www.tndecisionmaking.org/.  Accessed February 2024.
• 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 February 2024. Autism Speaks toolkits
• 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). https://rdcu.be/dytoI  Accessed February 2024.
• 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 February 2024.
• Information for professionals and caregivers about aging, dementia and Alzheimer’s disease in people with intellectual disabilities: https://www.the-ntg.org/ Accessed February 2024.
• 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. Accessed in February 2024.
  English Version
  Spanish Version

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. Accessed in February 2024.

Resources related to specific conditions

Autism websites that may be helpful for families, individuals, and direct support staff

• The Autism Society of America: https://autismsociety.org/ Accessed February 2024.
• Autism Speaks: www.autismspeaks.org Accessed February 2024.
• The AASPIRE Healthcare Toolkit has information and worksheets for adults on the autism spectrum, their supporters, and health care providers: https://autismandhealth.org/ Accessed February 2024.
• Autism Speaks: Autism-Related Guidelines for Physical and Mental Healthcare Providers: https://www.autismspeaks.org/science-news/autism-related-guidelines-healthcare-providers. Accessed February 2024.

Down syndrome websites

• National Down Syndrome Society: www.ndss.org Accessed February 2024.
• National Down Syndrome Congress: ndsccenter.org Accessed February 2024.
• Canadian Down Syndrome Society: www.cdss.ca Accessed February 2024.
• Global Down Syndrome Foundation: www.globaldownsyndrome.org Accessed February 2024.
• Down Syndrome Education International:  https://www.down-syndrome.org/en-us/ Accessed February 2024.
• Down Syndrome: Health Issues by Dr. Len Leshin: www.ds-health.com Accessed February 2024.
• Down Syndrome Medical Interest Group: www.dsmig.org.uk Accessed February 2024.
• Understanding Aging in Down Syndrome: A First Step:
  A Research Report Accessed February 2024.
• Managing the Care of Adults with Down Syndrome, PubMed: https://www.bmj.com/content/349/bmj.g5596.long Accessed February 2024.
• Growth Charts for Children with Down Syndrome: https://www.cdc.gov/birth-defects/hcp/down-syndrome-growth-charts/?CDC_AAref_Val=https://www.cdc.gov/ncbddd/birthdefects/downsyndrome/growth-charts.html Accessed February 2024.
• Caregiver Guidebook for Individuals with Down Syndrome and Alzheimer’s Disease: http://www.ndss.org/about-down-syndrome/publications/caregiver-guide-order-form/ Accessed February 2024.
• Primary Care Provider’s Guide to Women’s Health and Down Syndrome:
  https://ndss.org/resources/primary-care-providers-guide-womens-health-and-down-syndrome

Fragile X syndrome websites

• FRAXA Research Foundation: www.fraxa.org Accessed February 2024.
• The National Fragile X Foundation:  www.fragilex.org Accessed February 2024.
• Fragile X Research Foundation of Canada: www.fragilexcanada.ca Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Fragile X Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/fragile-x-syndrome
  Accessed February 2024.

Prader-Willi syndrome websites

• Prader-Willi Syndrome Association USA: www.pwsausa.org/ Accessed February 2024.
• Prader-Willi Syndrome Network (Ontario): www.pwsnetwork.ca Accessed February 2024.
• Pittsburgh Partnership, specialists in Prader-Willi Syndrome: www.pittsburghpartnership.com Accessed February 2024.
• Foundation for Prader-Willi Research: www.fpwr.org/about-foundation-prader-willi-research/ Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Prader-Willi Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/prader-willi-syndrome Accessed February 2024.

Williams syndrome websites

• Canadian Association for Williams Syndrome: https://www.williamssyndrome.ca/ Accessed February 2024.
• The Williams Syndrome Association (WSA) (USA): https://www.williams-syndrome.org/  Accessed February 2024.
• Williams Syndrome Association: www.williams-syndrome.org/doctor/adult-medical-issues Accessed February 2024.
• Williams Syndrome clinics in different states: https://williams-syndrome.org/parent/williams-syndrome-clinics Accessed February 2024.

22q11.2 Deletion syndrome websites

• Chromosome 22 Central: www.c22c.org Accessed February 2024.
• International 22q11.2 Foundation: www.22q.org Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for 22q11.2 Deletion Syndrome: https://nm.medicalhomeportal.org/diagnoses-and-conditions/22q11.2-deletion-syndrome
  Accessed February 2024.
• UCDavis Health Deletion Syndrome Resource Guide: https://health.ucdavis.edu/mindinstitute/resources/22q11.2_deletion_syndrome.html Accessed February 2024.

Other genetic or related conditions

• The Online Mendelian Inheritance in Man is a compendium of human genes and genetic phenotypes: www.ncbi.nlm.nih.gov/omim Accessed February 2024.
• GeneReviews is a medical genetics information resource developed for physicians, genetic counselors, other health care providers, and researchers: https://www.ncbi.nlm.nih.gov/books/NBK1116/ Accessed February 2024.
• Turner Syndrome Society of the U.S.: http://turnersyndrome.org/ Accessed February 2024.
• Spina Bifida Association: www.spinabifidaassociation.org Accessed February 2024.
• International Rett Syndrome Foundation: Comprehensive Care Guidelines: https://www.rettsyndrome.org/guidelines/ Accessed June 2024.
• United Cerebral Palsy: http://ucp.org/ Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Angelman Syndrome: https://www.medicalhomeportal.org/living-with-child/diagnoses-and-conditions—faqs/angelman-syndrome Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Cerebral Palsy: http://www.medicalhomeportal.org/diagnoses-and-conditions/cerebral-palsy Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Intellectual Disability: https://www.medicalhomeportal.org/diagnoses-and-conditions/intellectual-disability-and-global-developmental-delay Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Spina Bifida: http://www.medicalhomeportal.org/diagnoses-and-conditions/spina-bifida Accessed February 2024.
• The Medical Home Portal’s Diagnosis Information for Turner Syndrome: http://www.medicalhomeportal.org/diagnoses-and-conditions/turner-syndrome/description Accessed February 2024.
• Rare Chromosome Disorder Support and Information: https://www.rarechromo.org/ Accessed February 2024.