Presentation: Parent Collaboration and Adolescent Consultation - Developing a Clinical Practice Guideline for Empowerment for Youth 6 to 21 Years of Age with Intellectual Disabilities

This presentation was delivered in March 2019, by Michel Mercier and Julie Bergeron from the National Institute for Excellence in Health and Social Services (INESSS) at the Canadian Foundation for Healthcare Improvement’s Diversity in Patient Engagement Learning Exchange event. The presenters shared the development of draft clinical practice guidelines aimed at supporting greater self-reliance among younger people with intellectual disabilities. This work was done in partnership with parents and through consultations with the younger people.

The expertise and insights gained from the project resulted in recommendations that directly reflect the needs and priorities of younger people and their families – positioning their life goals as drivers for the proposed interventions.

Learnings include:

• the importance of moving beyond conventional engagement methods clarifying roles and purpose, regular follow-up
• support through ascertaining readiness for engagement, comfort and providing compensation
• understanding and preparing for different barriers, as well as potential ethical underpinnings to engagement