Medicaid Has Made My Life Possible
The Republican healthcare bill now threatens my life and millions like me.
When I was three-years-old, a couple of years before I moved to San Francisco, a doctor told my very young, single mother that because I was quadriplegic due to cerebral palsy, I would never be able to do much of anything. With a great deal of help from my mom and all the other people she calls my “village,” I was able to prove that doctor wrong.
The support of Medicaid has been critical to my success. I need someone to help me dress and to take me to the bathroom — that kind of support is a lot of work. Since my family would have done everything possible to keep me out of an institution or nursing home, they would have spent every hour and every penny they had to help me. Because of the money Medicaid provides for the Home and Community-based attendant support, they have not had to give up their entire lives for mine. Medicaid has allowed them to have full and productive lives, and it enables me to live a full and productive life in the community, too.
I was able to attend UC Berkeley because I had someone getting me up each morning, dressing me, and taking me to the bathroom. I was also able to provide disability awareness programs to thousands of students in the Bay Area because of the attendant care that Medicaid paid for. As I have advocated to help domestic workers (like attendants) to get overtime and other worker protections, I have done so with the help of Medicaid funded attendants.
In 2011, when President Obama announced a regulation mandating minimum wages and overtime for in-home care providers, I was invited to participate in his announcement at a White House press conference, and of course wouldn’t have been able to be there without my attendant.
Medicaid did not make everything “easy.” My mother had to forgo getting married for fifteen years so that we could remain poor enough for me to qualify for Medicaid, in order to pay for my wheelchairs, other equipment and medical treatments. She saw the huge challenges faced by families who did not qualify for Medicaid, but who couldn’t get insurance for their disabled children due to their pre-existing conditions.
Besides the fact that she simply wanted to get married to my step-father, remaining legally “single” meant she had to go without her own health insurance. She was finally able to marry my step-father and obtain coverage through his employer once I turned eighteen and could qualify for Medicaid on my own. This pre-existing condition problem was solved by the ACA, but now threatens to become a huge problem again.
In 2013, I checked into UCSF for five days to begin chemotherapy for lymphoma. I was supposed to come back every 21 days for six treatments total. Unfortunately, because of my disability, everything went terribly wrong, and I was in the hospital for a very costly five months, instead. If there had been a cap on Medicaid, my family would have gone bankrupt … or I could have just died. A Medicaid cap is a real “death panel.”
When I was chairperson of the California State Council on Developmental Disabilities, we talked about how to expand Medicaid-based attendant care because too many people with disabilities who need this assistance are still not covered. As we all saw at Senator McConnell’s office, disabled people who need attendants and other Medicaid provided health care are terrified of what comes next. We do not want to be forced into nursing homes or other institutions, like in the bad old days before the disability rights movement. I urge you, whoever you are, to do everything you can to oppose the Republican healthcare bill.
Sascha Bittner is an active member of the disability rights movement in California’s Bay Area as well as a leading member of Hand in Hand.
