Scenario 5: Communication to support self-determination in health

A high school psychologist who works with adolescent students with ID wants to support them in developing attitudes and skills for self-determination and health self-management. What resources could he consult?

Self-determination involves knowing what you want, setting your own goals and making your own decisions. Professionals should support individuals with ID in taking an active role in their own healthcare and health-related decision-making beginning in early adolescence and continuing through transition into adulthood.


RESOURCES:

Topic:  Self-Determination

Title:  What is self-determination and why is it important? (Print material and video)

Source:  National Gateway to Self-determination

Find at:  http://ngsd.org/news/what-self-determination-and-why-it-important

Description:  What is Self-Determination and Why is it Important is part of a multi-media product that…provides a user-friendly, attractive introduction to self-determination and its importance in the lives of people with developmental disabilities by relating the stories of self-advocates, as well as their family and support staff.”


Topic:  Self-Determination and Health

Title:  “National Gateway to Self-determination:  Research to Practice Guide” (2012)

Source: National Gateway to Self-Determination

Find at:  http://ngsd.org/sites/default/files/research_to_practice_sd_-_issue_3.pdf

Description:  This resource explores opportunities for people with ID to increase health self-determination and includes the perspective of people with ID and their families, including:

  • Levitz, M. (2012). A Self-Advocate’s View of Health Self-Management, pages 13-14.
  • Levitz, B., Abraham-Inz, A., Brenner, S., Devine, K., Lieberman, A., Ugliarolo, S. (2012). In Our Own Words: Parents Advice on Promoting Health Self-Advocacy for Individuals with Developmental Disabilities, pages 15-17.

Title:  My Health, My Choice, My Responsibility

Source:  Westchester Institute for Human Development University Center for Excellence in Developmental Disabilities

Find at:  http://www.wihd.org/resources/resource/health-self-advocacy-my-health-my-choice-my-responsibility

Description:  The purpose of these training materials “…is to help individuals with developmental disabilities make healthy choices in daily life and speak up for good health. Topics include: developing a health plan, self-advocating at the doctor’s office, physical activity, nutrition, safety and cleanliness in the home, hygiene, and emotional health.”

Title:  Respecting the Young Adult (Video)

Source: Utah Medical Home- Integrated Services Project

Find at:  http://www.youtube.com/watch?v=RJVgU7aGUZw   

Description:  A panel of young adults with ID describe their experiences with transition and independence.

Title:  Promoting self-determination in health and medical care:  a critical component of addressing health disparities in people with disabilities.  (Shogren et al, 2006)

Source:  Journal of Policy and Practice in Intellectual Disabilities

Find at:  http://www.wihd.org/wp-content/uploads/2015/02/Shogren-KA-et-al..pdf

Description:  Quotation from the abstract-   “As increased attention has been directed toward the disparities experienced by people with intellectual disabilities in achieving positive health outcomes, the importance of promoting the active involvement of people with intellectual disabilities in efforts to reduce such disparities and promote positive health and wellness outcomes has been acknowledged by researchers and policymakers…The authors…review the current research on self-determination and its impact on health, as well as the implications of this research for the development of strategies that promote self-determination in the achievement of health and wellness outcomes in people with intellectual disabilities…They also provide recommendations for future research and practice.”


Topic:  Self-determination and Health Transition

Title:  Taking Charge of My Health: Partners in Health Transition web-based resource

Source: Westchester Institute for Human Development University Center for Excellence in Developmental Disabilities

Find at:  http://www.takingchargeofmyhealth.org/

Description:  People with ID and their families have important roles in assuring successful health transition.    This website provides information and resources to help teens and young adults with ID, families and caregivers to address health transition, independent living, and health self-determination.

Title:  Got Transition website

Find at:  http://www.gottransition.org/index.cfm

Source:  Got Transition

Description:  “Got Transition aims to improve transition from pediatric to adult health care through the use of new and innovative strategies for health professionals and youth and families.”