“When I moved, I was calling to find a new doctor. One clinic said they did not take people with disabilities.”
“I don’t get to talk to my doctors. Mom does the talking. It’s hard because she goes by observations, not what’s really wrong.”
“There is no accessible transportation after 5 pm. I use a wheelchair all the time. I was at the hospital and I could not get my wheelchair home with me when I left. I had to leave it at the hospital and send someone to get it the next day.”
These are the kinds stories that helped write the Special Hope Foundation mission, and we are so proud that two of our esteemed grantees have partnered to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.
UCSF’s Office of Developmental Primary Care and the Autistic Self Advocacy Network collaborated on the development of an important document that outlines the perspectives of people intellectual and developmental disabilities (I/DD) on their interactions with the health care system.
Our Lives, Our Health Care: Self Advocates Speaking Out About Our Experiences with the Medical System highlights the need to reform the way health care services are delivered for this population. It was compiled based on feedback from focus groups conducted by People First of Washington State, Green Mountain Self Advocates and the Autistic Self Advocacy Network of Boston.
- Problems with access—transportation
- Locating a disability competent provider
- Overt discrimination physical and cognitive access problems–explaining things in a way that people can understand. It includes using different formats, plain language and sometimes non-verbal communication such as demonstrating skills, assistive technology or picture supports.
“We look forward to partnering with self-advocacy groups and allies across the country to advance health care access for people with I/DD,” said Clarissa Kripke,MD, FAAFP , the Director of Developmental Primary Care, Department of Family and Community Medicine at UCSF and a recent recipient of the Chancellor Award for Disability Service.
The Autistic Self Advocacy Network, led by Ari Ne’eman, is an organization run by and for autistic people. They have written a series of health policy papers, which outline a policy agenda for ending health disparities for people with developmental disabilities (not just autism.) “Ari Ne’eman is a visionary leader,” says Dr. Kripke, “He and his team are reshaping the conversation about disability in this country. We need to place disability in the framework of diversity, and apply what we know about social justice and social determinants of health.”