Will someone please give me some good news about healthcare for people with disabilities?
I have to be honest.
It has been difficult lately, even for a cockeyed optimist cheerleader-type like me, to find a silver lining in recent news about threats to services for people with disabilities. The most recent story (and there are many from states all across the country) is this:
Gov. Jerry Brown last week issued a proclamation to convene a special legislative session on health care spending on the same day he agreed to a state budget that had many of its health-related provisions negotiated away.
Financing the Medi-Cal program may not be sustainable, Brown said, given its expansion over the past two years and the looming loss of the managed care organization tax, which could cost the state about $1.1 billion.
Medi-Cal, California’s Medicaid program for low-income and disabled people, covers about 12.3 million Californians, slightly under one-third of the population of California. More than half of the state’s children are Medi-Cal kids.
This news item reminds me of the day an acquaintance (she was a friend, the story that follows turned her into an acquaintance) asked me “Who pays for your (autistic) son’s education? The school district? That’s not fair. Why should tax payers pay for his special needs?”
I was too exhausted at the time to say what I thought, which was “What if your child becomes disabled tomorrow (for whatever reason)? Or what if she remains super smart and competitive academically? Who will pay for her gifted and talented and super-duper honors classes?”
What I needed back then was some version of The Special Hope Foundation’s Vision/Mission Statements:
We believe that every human being has the right to be treated with dignity. Our current healthcare system provides inadequate consideration for the needs of adults with developmental disabilities, and to neglect this population is in sharp contrast to accepted medical and ethical standards. However, we are confident that this injustice is both definable and surmountable with the result that every adult with a developmental disability will have access to appropriate healthcare options. (Yeah!!)
The mission of the Special Hope Foundation is to promote the establishment of comprehensive health care for adults with developmental disabilities designed to address their unique and fundamental needs.
How are we doing that?
- With Clinics, like The Achievable Clinic in Culver City, California. The clinic is a community health center developed to provide culturally appropriate, coordinated, high quality and comprehensive primary and specialty care services in a medical home setting for individuals with developmental disabilities. Read more here.
- With Toolkits that help adults with disabilities find appropriate health care, like the one developed by the Vanderbilt Kennedy center. Read more here. The Autistic Self Advocacy Network has also created a series of toolkits, including one for self-advocates on healthcare and the transition to adulthood. Read more here.
- With Programs that improve health outcomes for people with developmental disabilities across the lifespan, like UCSF’s Office of Developmental Primary Care. Read more here.
- By funding the development of health assessments for people with developmental disabilities. The Special Hope Foundation provided a grant to The University of Rochester and The Special Olympics of NY, who will collaborate to implement and test a Team Trainer Program, where health care students will be partnered with Special Olympic athletic teams to increase athletes’ participation in health care screenings, support coaches, facilitate follow-up care with healthcare providers, and incorporate health and wellness activities into team trainings. Read more here.
- With conferences that educate the medical community about the unique healthcare needs for people with disabilities, like UCSF’s Annual Conference, and the AADMD’s Conference, which is coming up next month in Los Angeles in conjunction with the Special Olympics World Games.
- By supporting self advocacy efforts, such as those made by People First of California and PASDA.
- Funding Student Training, so many great new programs, including the following:
- Starr Center on Intellectual and Developmental Disabilities , Brandeis University
- Westchester Institute for Human Development
- JFK Partners, UCEDD and LEND, University of Colorado.
The Special Hope Foundation is also supporting Telehealth initiatives for people with disabilities. More about that next time.
Phew. I feel better already. Let’s keep the momentum going.
Right now, send me a message HERE and tell me what you are doing to make GREAT healthcare available to people with disabilities?
Laura Shumaker is the Director of Communications for the Special Hope Foundation. You can also find her at SFGate, where she writes an autism and disability blog.