4:08pm June 2, 2014

➸ People with disabilities tell their healthcare stories

Is the healthcare system set up to accommodate people with disabilities? […]

In a continuing effort to fill these gaps, UCSF’s Office of Developmental Primary Care and the Autistic Self Advocacy Network secured a grant from The Special Hope Foundation and 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. […]

this is really important.

i’m one of the people who has the least problem with healthcare access; i have good insurance, live in an area with good providers, lucked out and got a really friendly, respectful gp and an excellent physical therapist. i’m relatively mobile, i have reliable transportation, and my autism is of the type that means i’m usually quite verbal.

yet even i have problems with health care access. you have to do a bunch of stuff by phone; phones are a great big nope for me. a lot of things aren’t explained in ways i can understand. and even medical professionals who know i’m autistic and do their best to be helpful and accomodating just don’t know enough about autism, so we end up with miscommunications because symptom reporting forms and suchlike aren’t written for people who take things literally.

my problems with healthcare are nothing compared to the issues most disabled folks have. you’d think hospitals and clinics would be the first to consider accessibility, considering how many disabled patients they see, but they’ve actually got a long, long way to go.

I wish I could’ve been involved in this – I have quite a healthcare story to tell (that I want told, far and wide, until it never happens to anyone again) and these people are right in my area, geographically. GMSA is literally in my backyard pretty much. I never heard about any of this.

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