Taking Charge of My Health Care

Improving the health of, and health care access for, people with intellectual and/or developmental disabilities

drawing of unhappy/unhealthy girl speaking to her doctor
Cartoon of young woman who looks unhappy or unhealthy speaking with her doctor.

The Oregon Self-Advocacy Coalition, the Oregon Office on Disability and Health and the University Center of Excellence in Developmental Disabilities are excited to share the Taking Charge of My Health Care Toolkit, an online resource for people with Intellectual/Developmental Disability and those who support them. The toolkit provides information, resources and skills-building strategies for individuals to learn how to best advocate for their health and health care. The toolkit offers 9 modules of different topics that can be used for individual learning or in a workshop or group format. Each of the 9 modules can also be used individually as a stand-alone lesson, or any combination of the modules can be used for a workshop or class format.

The toolkit is a collaboration between the Oregon Self-Advocacy Coalition, the Oregon Council on Developmental Disabilities, the Oregon Office on Disability and Health and the University Center of Excellence in Developmental Disabilities and with input from members of an expert panel and other stakeholders.

drawing of young woman speaking on the phone to her doctor with someone helping her sitting next to her
Drawing of young woman speaking on the phone to the doctor with another woman sitting next to her offering her assistance.

The Taking Charge of My Health Care Toolkit is designed to provide health and health care advocacy education and resources for people with intellectual and developmental disabilities and those who support them.

The toolkit also provides resources for disability service providers and family members who play an integral role in providing support to self-advocates. There are 18 “Health Care Fact Sheets for Parents and Service Providers” that provide information and resources on a variety of health and health care issues that are specific for people with intellectual/developmental disabilities.

Testimonials

"I am so excited about sharing this information with self-advocates. The toolkit encourages self-advocates to speak up for themselves. It is super person centered. I love it!"  said Sara Davis, Director of Supported Living with Living Opportunities.

"Good health and access to good health care is very important. We always have a choice in what we eat, how much we exercise and how to be the person we want to be. Advocating for our health care is similar, we have a choice on who our doctor is and what happens to our bodies.  Anything is possible when we take charge of our health. It makes us stronger,"  said Eric Thompson, Oregon Self-Advocates Coalition Member.

"Some people with disabilities process differently than other people without disabilities. The Toolkit being offered in both video and written formats, helps get the message across to everyone,"  said Phil Stone, Oregon Self-Advocates Coalition Member.

Man in a hospital bed with a doctor and social worker speaking to him. His mother is sitting next to the bed.
Man laying in hospital bed with doctor and social worker speaking to him. His mother is sitting next to him.
Heavier man sweating and leaning over a shopping cart full of unhealthy food.
Heavier man sweating and leaning over a shopping cart full of unhealthy food.

The toolkit includes a Leader Guide and 9 modules that include workbooks with corresponding worksheets, videos, and PowerPoint slides that can be used to guide facilitators through conducting a workshop. Additional materials include supplemental handouts, fact sheets for family members and direct support staff professionals, and a variety of other related resources.

The Taking Charge of My Health Care Toolkit includes materials updated and adapted from previous products developed by Australia's New South Wales Council for Intellectual Disability, and the Oregon Self-Advocates Coalition's original "My Health Booklet". It is also influenced by Oregon Office on Disability and Health's successful Healthy Lifestyles Program.

Happy/healthy young woman in wheelchair on a stage singing into a microphone
Happy/healthy young woman in wheelchair on a stage singing into a microphone