I am Autistic and I have depended on Medicaid for my health care coverage for 23 years now.
During those years, I have watched my coverage expand and shrink, depending on the political climate and the state I was living in at the time. (I have been a resident of Kentucky, Illinois, Minnesota, Idaho, and Florida while receiving Medicaid benefits.) I was sometimes irritated at not being able to get everything I needed but I never felt the cold fear I am experiencing now as I watch Congress working on stripping away healthcare for me and millions of other disabled people who depend on Medicaid to live, thrive, and participate fully in life.
I have lived on SSI benefits for most of my adult life, but I dream of becoming self-supporting. I have been unable to maintain employment, but a few years ago I started my own business as a writer and public speaker.
Every year I draw closer to my goal of financial self-sufficiency. Without health coverage, though, my dream crumbles under its own weight.
An examination of survey data found that in the states accepting the federal funds to expand Medicaid, as offered by the ACA, there was a significant increase in employment among disabled people. Half of those who benefited from Medicaid expansion were disabled workers, but if the AHCA is passed, this expansion will be one of the casualties.
Through Medicaid, I can get vital tests like blood tests and the colonoscopy I had this winter. I can get advice and medication for controlling my diabetes. I can get eye exams and glasses, dental exams, and emergency medical care. Because of Medicaid, I am able to be self-employed and receive healthcare without being financially demolished, reduced to begging for charity to be able to see, chew, or quite literally survive.
Even so, I represent a privileged “tip of the iceberg” when compared to many of my friends who will be forced to return to institutionalization under AHCA. One of the “optional” programs that will be cut is Community First Choice (CFC), an Obamacare initiative to reduce institutionalization of disabled people. My dear friends who have finally escaped grim existences in residential facilities are going to be forced back behind institutional doors, away from the community, isolated from the happy lives they have built with supported independent living, locked away from friends and family.
It is not too late to lobby Congress. The AHCA has not yet gone to the Senate for a vote and likely requires significant revision. If the legislation is revised, it will have to go before the House for a new vote. So it’s not even too late to talk to Representatives about AHCA which passed the House, as currently written, by a very narrow margin.
Fellow Autistic, Ari Ne’eman, who served on the Obama administration National Council on Disability, reminded us of the importance of all disabled people joining together in battle against AHCA when he said, “The disability community is a hand with many fingers but what’s happening right now is that they are all closing together into a fist.”
Let’s raise that powerful fist of community action high and protect our health coverage from an ill-conceived piece of legislation that will hurt so many Americans. We cannot allow the AHCA to pull our lives out from under us.
Sparrow Rose Jones is an Autistic writer, artist, public speaker, and activist. Jones is the author of “No You Don’t: Essays From an Unstrange Mind” and “The ABCs of Autism Acceptance.” More information about Jones can be found athttp://www.sparrowrose.com.