Assess decision-making capacity
Assess decision-making capacity of adults with IDD using a tool that is adapted to them and considers their need for accommodations and supports (eg, the Decision-Making Checklist32). Screen for factors that can affect decision-making capacity, such as those listed in the background, and address with interventions or supports. When uncertain, refer to a psychologist or other professional who is familiar with assessing people with IDD or similar needs.31,33
Adapt communication and involve caregivers
In assessing decision-making capacity and supporting a patient’s decision making, adapt communication to the patient and involve family and other caregivers familiar with the patient, as in the guideline Effective Communication.27
Shared decision making
Engage in a shared decision making process with patients and their caregivers. When the legal substitute decision maker does not know the patient well, propose consulting trusted family and other caregivers to inform deliberations.31,33
The Decision-Making Checklist , developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), provides a checklist and process for obtaining consent from people with intellectual and developmental disabilities.
The tip sheet Communicating effectively with people with developmental disabilities, developed by the Developmental Disabilities Primary Care Initiative at Surrey Place (Toronto, 2011), describes adaptations in communication that facilitate the interaction with people with intellectual and developmental disabilities.
Learn how to implement these guideline recommendations into your practice from selected articles in the special issue on primary care of adults with intellectual and developmental disabilities in Canadian Family Physician, Vol 64 (suppl 2): S1-78, April 2018:
17. Sullivan WF, Heng J. Ethics. In: Taggart L, Cousins W, editors. Health promotion for people with intellectual and developmental disabilities. Maidenhead, BRK, England: Open University Press; England; 2014. p. 204-10.
27. Kelly M. Communicating effectively with people with developmental disabilities. In: Sullivan WF, Developmental Disabilities Primary Care Initiative Scientific and Editorial Staff, editors. Tools for the primary care of people with developmental disabilities. Toronto: MUMS Guideline Clearing House; 2011. p. 18-20.
30. O’Dell R, Leafman J, Nehrenz Sr. GM, Bustillos D. Health care decision making and adults with intellectual disability: A descriptive survey. AJOB Primary Research. 2012;3(1):8-13.
31. Heng J, Sullivan WF. Ethical issues relating to consent in providing treatment and care. In: Brown I, Percy M, editors. Developmental disabilities in Ontario. 3rd ed. Toronto: Ontario Association on Developmental Disabilities; 2011. p. 552-60.
32. Gillis G, Gitta M, Heng J, Korossy M, Leong R, Sullivan WF, et al. Informed consent in adults with developmental disabilities & informed voluntary consent checklist and sample questions. In: Sullivan WF, Developmental Disabilities Primary Care Initiative [DDPCI], editors. Tools for the primary care for people with developmental disabilities. Toronto: MUMS Guideline Clearinghouse; Surrey Place; 2011. p. 11-7.
33. United Nations.Convention on the rights of persons with disabilities[Website]. New York: United Nations. 2006. Accessed 2017 Feb 21.