Congress: Medicaid Allows Me to Have a Job and Live Independently

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.

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Anonymous

Though my situation is different in many ways it is essentially the same, if Medicaid goes so does my health, well-being and possibly life. I have been Type 1 diabetic for 39 years. It has taken that long and only with the help of ACA to get me the help I need to get the best possible care by enabling me to get an insulin pump, the supplies needed to test blood sugar a proper number of times each day and the access to the many varied specialists to help me deal with prevention and care of all the insidious health issues that come from this chronic disease. If I lose Medicaid ALL of that goes away and I go back to taking a few shots of insulin a day and testing when I can afford it. Instead of focusing on things like regulating insurance and drug companies they focus on this abominable plan as if it is helpful to anyone. The ACA has problems but working to solve them would be far better than this sickness they are feeding us and telling us it is the cure. The Republicans don't seem to care about the people at all and the POTUS telling Congress if they don't vote for this they will lose votes in 2018 fails to see that they will lose far more by actually voting it in. They watch the people speak at town hall meetings and say they are paid protesters and believe their own story. It's sick, literally sicker than me and so callous about human life and decency. I can only pray sanity comes to reign at some point and our government stops playing along with the madness that has taken over our government. So many have stories like mine and the authors how can they ignore that?

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Anonymous

Likewise, as a person with a disability, this scares the living daylights out of me. Paul Ryan has a lot of chutzpah referring to these "reforms" as "freedoms." The only freedom it will offer many people totally dependent on these services is the "freedom" to rot away in a nursing home (if they are lucky), or simply to die.

Anonymous

Likewise, as a person with a disability, this scares the living daylights out of me. Paul Ryan has a lot of chutzpah referring to these "reforms" as "freedoms." The only freedom it will offer many people totally dependent on these services is the "freedom" to rot away in a nursing home (if they are lucky), or simply to die.

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Anonymous

I also have a disability and it took years to receive SSI and Medicaid. It was a nightmarish cycle of having to prove that I was ill and in need of treatment and being unable to see a doctor to do so because I had no insurance because I had pre-existing conditions. It took three trips to an emergency room for me to finally get help. I was delighted to learn about the ACA when it happened, glad for every person that wouldn't have to go through what I went through. But if this goes through, then every person will have to go through worse. This is barbaric and nightmarish; people who don't agree haven't been in a position where they're afraid they won't have a place to sleep tomorrow and medicine that is easy to get.

Julie Ann Racino

I agree that it is traumatic to have fear about one's living accommodations, personal safety, and basic health care that 'we believe" everyone else in America has access to. Critical to remember that if you were seen at the emergency room at all that is considered to be the "health care system" at work. Also, somehow you know of ACA, so likely and "intermediary health care provider" may be involved. As you indicate, "the government" has assured "disabled Americans" that SSI and Medicaid are entitlements, and in a videotape this morning (from 2000s), Judy Heumann (while she was Assistant Secretary at Office of Special Education and Rehabilitation) indicated that waiting lists for such services are illegal, and thus the federal department does not have any waiting lists. New is reported bonus (used to deny it) to health care employees if pre-existing conditions are cut off health care rolls (if they drop you for a month, it is new pre-existing again). Julie Ann Racino, American Society for Public Administration, 2017

Anonymous

So are all of you who have spent most of your life on some sort of Medicaid or SSI thanking the rest of us for paying for you?

Anonymous

Wow. Just wow. Praying for you and hoping you never need to take advantage of the various social safety net that me, my parents, and my children pay into so you can if you ever need to.

Anonymous

Wow to the comment above ! many of these persons with disabilities were born with them and never asked for their disabilities. Before home and community based services they were kept in institutions that never provided care they needed to flourish. These institutions easily cost Americans 3 to 5 times the amount Medicaid spends now to allow these persons a real life. You pay very little of your payroll taxes to insure these programs continue, and these indidivuals with disabilities also WORK, and pay the SAME payroll taxes (1.45%) as non disabled persons. Your comment makes obvious the need for persons with disabilities to REMAIN in the community and workplaces. Please thank a person with a disability for working 10 times as hard to even get to work, much less perform so well on the job.

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