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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, Vanderbilt University Medical Center

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. The Vanderbilt Kennedy University Center on Developmental Disabilities adapted the tools for U.S. practice and created the IDD Health Care website with related online training for health care professionals, as well as individuals with intellectual disabilities, family members, and caregivers.

This section focuses on some initial differences that you may encounter in providing care to this underserved population. These tools address those issues. The toolkit also includes sections on General Issues, Physical Health Issues, Health Watch Tables on specific disorders such as autism, Down syndrome and fetal alcohol spectrum disorder, and Behavioral and Mental Health Issues.

IDD Toolkit
This section focuses on some initial differences that you may encounter in providing care to this underserved population. These tools address those issues.
Some people with intellectual or developmental disabilities (IDD) have communication difficulties. People with intellectual disabilities 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.
Example: 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.
Main Reason for Today’s Visit to the Physician or Nurse (To be filled out by the Patient and/or Caregiver) • Please bring an updated form for each visit to the physician/nurse. • Bring an updated medication list, or all medications being taken. • Bring any monitoring forms being used (i.e., sleep or behavior charts). • Keep a copy of this completed form for the patient’s home medical files.

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