Taking Charge of My Health Care Toolkit
Improving the health of, and health care access for, people with intellectual and/or developmental disabilities
The Taking Charge of My Healthcare Toolkit was made by the Oregon Self-Advocacy Coalition, the Oregon Office on Disability and Health and the University Center of Excellence in Developmental Disabilities.
This toolkit has information to help people be self-advocates. Being a self-advocate means that you:
- Speak up for yourself and your needs
- Ask questions to get information you need to make decisions
- Participate in your own health and health care decisions
- Find a doctor you like that meets your health care needs
The Toolkit is for people with intellectual or developmental disability who want to learn about being self-advocates. It is also for people who support people with disabilities. Support people can include family members, disability service providers, friends, and health care professionals.
How to use the toolkit:
The tips and information shared in these materials can be used to support getting health care from a dentist, therapist, or other kinds of health professionals. The information for each topic in the toolkit is shown in videos, PowerPoint slides, written chapters, and worksheets. People using the toolkit can choose the topics and formats that are best for them.
The supplemental materials are printable tools and guides that may support communication, and planning for health care appointments.
Support person fact sheets are for people who support self-advocates. They have information on health and healthcare issues.
"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.
The Taking Charge of My Health Care Toolkit includes materials updated and adapted from a toolkit developed by Australia's New South Wales Council for Intellectual Disability. It also has information from the original My Health Booklet by the Oregon Self-Advocates Coalition and the Healthy Lifestyles Program by Oregon Office on Disability and Health .
The toolkit and its components were supported in part by the Grant or Cooperative Agreement Number DD000014, funded by the Centers for Disease Control and Prevention and by the University Center for Excellence in Developmental Disabilities funded by the Administration for Community Living Grant #90DDUC0039. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention, Administration for Community Living, or the Department of Health and Human Services.
Additional contributors to this toolkit include the NW ADA Center http://nwadacenter.org/
By accessing and/or using the “Taking Charge of My Health Care” toolkit, you hereby agree to the terms and conditions of the Creative Commons Attribution-NonCommercial-No Derivatives 4.0 International license.
United States of America. Oregon Health & Science University. Institute on Development and Disability- Oregon Office on Disability and Health, University Center for Excellence in Developmental Disabilities and the Oregon Self-Advocacy Coalition. Taking Charge of My Health Care Toolkit, 1st edition Portland: OHSU, 2020. https://www.ohsu.edu/oregon-office-on-disability-and-health/taking-charge-my-health-care-toolkit