As part of the one of five Americans living with a disability, I am happy to be gainfully employed. I am able to file and pay my taxes in a timely manner and can be considered a responsible adult. But this is only possible because I have the support I need to get out of bed each morning. And in order to continue being a productive member of society, I need Medicaid.
Never have I experienced more terror than when talks began in Washington, D.C., of new health care reform legislation that would essentially dismantle the health care system that allows me to live a fulfilling life. My fears came true last week when leaders in the House of Representatives introduced the American Health Care Act to repeal and replace the Affordable Care Act. The legislation is now estimated to slash $880 billion from Medicaid over the next 10 years.
And those cuts will hurt people like me who rely on Medicaid to lead full and dignified lives.
At age two, I was diagnosed with a neuromuscular condition and am a full-time wheelchair user. This means that each day I need help to prepare for and conclude my day. This includes help getting out of bed, dressing, bathing, grooming, prepping my meals, and beyond. Fortunately, I get the help I need through Medicaid’s home and community-based services (HCBS), which enables me to live independently within my community and make a difference by helping people.
Growing up in Kentucky, my family held me to the same standards of my able-bodied peers. I was expected to get a good education, pursue my dreams, and effect change in whatever way I could. For me, this meant leaving home to pursue both my education and career goals. Immediately after high school, I became a recipient of both Supplemental Security Income (SSI) and Medicaid services. With these services and support, I could concentrate on building a life for myself without being concerned about how I would get out of bed, go to class, or even go to the restroom each day.
Ultimately, I was offered my dream job in Washington — almost 1,000 miles away from home — where I could make a difference in the lives of young people. While I knew that my new salary would let me earn a living, I also knew that it wouldn’t change my need for home-based services. Like most people, I assumed that by getting a “real job” with “real insurance,” I would no longer need to worry about quality health care at home. But I was wrong.
Almost immediately after starting at my new job, I learned that commercial/private insurance does not cover the services I need to live independently. I would still need to rely on the services supplied through Medicaid just to ensure that I could go to work and maintain the independence that I had worked so hard to attain.
As of now, there are 582,000 people with disabilities on waiting lists for home and community-based services. Contrary to claims that cutting Medicaid for people who benefited from the ACA’s Medicaid expansion will leave more funding for people like me, this bill makes drastic cuts to all types of Medicaid enrollees, making longer wait lists for these services. This will affect millions of Americans with disabilities and could eviscerate the home health industry.
I have worked incredibly hard and have followed all the “right” paths in order to enjoy a life of independence and happiness. One that doesn’t include nursing homes or living at an institution. All of that is threatened now. It is up to disability rights advocates, working alongside broader civil rights organizations like the ACLU and the Consortium for Citizens with Disabilities, to defend our right to independence. We must raise our voices as loud as we can to ensure that these freedoms are not snatched from people like me.
We must act now to save Medicaid.