TIPS AND RESOURCES FACT SHEETS

Produced for the IDD Toolkit by Janet Shouse

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.mc.vanderbilt.edu/vkc/resources/tipsheets/

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 http://flfcic.fmhi.usf.edu/program-areas/health.html. Accessed September 2016.
  • Human Development Institute at University of Kentucky. Pre-service training for medical students. Available at http://medical.phtmodules.net/default.aspx. Accessed September 2016.
  • American Academy of Developmental Medicine and Dentistry. Pre-service training webinars. Available at http://aadmd.org/page/pedd-webinar-series. Accessed September 2016.
  • 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 September 2016.
  • Americans with Disabilities Act. Guidelines for physicians’ offices. Available at
    http://www.ada.gov/medcare_mobility_ta/medcare_ta.htm#part1. Accessed September 2016.
  • Bridges4Kids. Your next patient has autism. Available at http://bridges4kids.org/Disabilities/YourNextPatient.pdf. Accessed September 2016.
  • 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 September 2016.
  • 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 http://www.medpagetoday.com/upload/2013/8/20/PIIS0025619613003716.pdf. Accessed September 2016.
  • National Task Group on Intellectual Disabilities and Dementia Practices Screening Instruments. Available at http://aadmd.org/ntg/screening. Accessed September 2016.
  • American Congress of Obstetricians and Gynecologists. Six Powerpoint presentations on health care for women with disabilities. Accessed September 2016:
    Women with Disabilities
  • Office of Women’s Health, U.S. Department of Health and Human Services. Accessed September 2016: Women and Illnesses and Disabilities
  • Villanova University College of Nursing. Training videos for nurse practitioners caring for individuals with IDD. Accessed September 2016:
    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 September 2016:
    AAIDD Video Library

Resources for providers, Patients and families:

Resources related to specific conditions

Autism websites that may be helpful for families, individuals and caregivers

Down syndrome websites

Fragile X syndrome websites

Prader-Willi syndrome websites

Williams Syndrome websites

22q11.2 Deletion syndrome websites

Other genetic or related conditions