About the Toolkit

Adults with intellectual or other developmental disabilities face a cascade of health disparities. They often:

  • have complex or difficult-to-treat medical conditions
  • have difficulty accessing health care
  • may receive inadequate health care
  • may have difficulties expressing their symptoms and pain
  • receive little attention to wellness, preventive care, and health promotion

Yet these adults deserve quality, patient-centered health care as well as the general population.

All tools except for the Autism Health Watch Table were developed in Ontario, Canada, to complement the Primary care of adults with developmental disabilities: Canadian consensus guidelines (DD Guidelines). The tools were developed by the Developmental Disabilities Primary Care Initiative (DDPCI) with funding from the Ontario Ministry of Community and Social Services, Ontario Ministry of Health and Long Term Care, Surrey Place Centre and Surrey Place Centre Charitable Foundation.

Development Process of Canadian Tools and Acknowledgements. Accessed July 2021.

Developmental Disabilities Primary Care Initiative. Tools for the Primary Care of People with Developmental Disabilities. 1st ed. Toronto: MUMS Guideline Clearinghouse; 2011. Printed copies of the Canadian Tools may be purchased at www.mumshealth.com. (Printed books do not include the Autism Health Watch Table, the Williams Syndrome Health Watch Table or U.S. adaptations.) Accessed July 2021.

Surrey Place Centre offers versions of the tools on its website at www.surreyplace.on.ca. Accessed July 2021.

The original Canadian DD guidelines (Sullivan WF, Berg JM, Bradley E, Cheetham T, Denton R, Heng J, Hennen B, Joyce D, Kelly M, Korossy M, Lunsky Y, McMillan S. Primary Care of adults with developmental disabilities: Canadian consensus guidelines. Can Fam Physician 2011; 57:541-53) can be found at http://www.cfp.ca/content/57/5/541.full.pdf+html. Accessed July 2021.

See References.

The Developmental Disabilities Health Care E-Toolkit is a project of the Vanderbilt Kennedy Center for Research on Human Development, the University of Tennessee Boling Center for Developmental Disabilities and the Tennessee Department of Intellectual and Developmental Disabilities and is funded by the WITH Foundation, formerly the Special Hope Foundation. WITH is a acronym for Working for Inclusive and Transformative Healthcare, and WITH focuses its efforts on improving health care for adults with intellectual and developmental disabilities. (Accessed July 2021)

The Developmental Disabilities Health Care E-Toolkit’s activities and contributions to the Tools include:

  • The creation of the website
  • The Autism Health Watch Table
  • The Advisory Committee of U.S. physicians and other stakeholders
  • The adaptation of the tools for use in the United States
  • Fillable forms
  • Resources for U.S. providers and families
  • An option to Contact Us to suggest a tool or a resource

Using Forms from this Toolkit

Our Advisory Committee

Our hope is that this website will give virtually every U.S. primary care provider electronic access to best practice tools, and thus will enable each physician to more readily serve adults with intellectual or other developmental disabilities.