Tools You Can Use

Toolkit for Primary Care Providers: Health Care for Adults with Intellectual and Developmental Disabilities

IDD Toolkit Graphic, Square
From the Vanderbilt Kennedy Center

Adults with intellectual or other developmental disabilities (IDD) 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.

The Toolkit for Primary Care Providers 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.

These tools were developed by the Developmental Disabilities Primary Care Initiative (DDPCI) (2005-2014), Surrey Place Centre, Toronto, Canada, funded by Ontario Ministry of Community and Social Services and Ontario Ministry of Health and Long-Term Care, Surrey Place Centre, and Surrey Place Centre Charitable Foundation. The DDPCI published Tools for the Primary Care of People with Developmental Disabilities to complement the Primary care of adults with developmental disabilities: Canadian consensus guidelines. All tools © 2011 Surrey Place Centre. Adapted for use in the U.S. by the Developmental Disabilities Health Care E-Toolkit Project.

IDD Toolkit
People with ID or those whose disabilities directly affect speech, hearing, or sight are more likely to have communication difficulties. Unless a communication barrier is obvious, it is best not to assume one exists unless the patient, a family member, or other caregiver tells you about the barrier. Even when a communication difficulty exists, the exact barrier and the best way to address it often varies.
Informed consent requires a physician or other health care provider to furnish a patient with information sufficient to allow the patient to understand and give approval for a proposed medical treatment or the performance of a particular medical procedure. Physicians and health care providers have a duty before performing a procedure to provide adequate explanation to assist the patient’s decision-making process.
Inform the patient that you will be doing a capacity assessment with him/her. Do not assume that the patient will understand the connection between the illness and some consequent intervention.
Understanding the intellectual abilities and adaptive functioning of persons with IDD sets the stage for productive clinical encounters. This, in turn, leads to optimal assessments and appropriate treatments. It also promotes better partnership with persons with IDD and enables them to participate in their own health care.
To get started, encourage office staff, when any new patient makes an appointment, to ask if the patient has a disability or special needs so that the office can be prepared.
An easy to use form that can be filled out by the Patient and/or Caregiver and given to their health care provider.
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