How Healthcare is Oppressing with Disabilities

October 30, 2018 | Angelique Long, 2018 AAPD Summer Intern

I’m a walking medical textbook. I have over a dozen diagnoses, with nearly half of them being rare. I have seen hundreds, if not thousands, of doctors in my lifetime and have fought my body to stay alive on more than one occasion. For now, I am able to have a life and function relatively well with the assistance of a fantastic team and an impressive list of pharmaceuticals. I have fought a long, hard battle to get where I am today. But recently, all of that was threatened.

I proudly acknowledge the reason I am alive today is because of the Affordable Care Act (ACA); I was able to stay on my parents’ insurance plan longer and I didn’t have to worry about pre-existing conditions. There is no doubt that the ACA was, and still is, a revolutionary movement in our nation. However, with the lack of support in 18 states, millions of Americans fall in what is now known as the coverage gap. This gap consists of poorer individuals living in those states that have opted to not expand Medicaid and that do not qualify for their state’s existing Medicaid program.2

I have recently found myself among the millions of Americans in the coverage gap, as Missouri, my home state, has not expanded Medicaid. I was aging out of my parents’ plan, and, because of the confusing language of healthcare, I would soon find myself without medical coverage. I went on the marketplace to see what they might have to offer me, like we are so often advised to do, and was told that I didn’t make enough money to enroll in any of their plans. They told me, in the most impersonal way possible, that because I live in a state that hasn’t expanded Medicaid, I couldn’t get a comprehensive health plan. As I have already mentioned, I would not be here today if it weren’t for my insurance. I was terrified – I didn’t have insurance and couldn’t afford to get any.

Despite all of that, I am one of the lucky ones. After resolving some miscommunications, my parents’ insurance provider deemed me completely and permanently disabled. They decided that I am not able to hold gainful employment, and that therefore, they will keep me on. But not without stipulations:

  • I must maintain this disabled status;
  • I cannot make more than $10,000 a year;
  • My address has to remain at my parents’ residence.

Though this is a fantastic temporary fix and I am grateful for it, I don’t want to be stuck in forced poverty my entire life.

Disabled people want to work. Disabled people want to live independently. Disabled people want to live a productive life. But, for some reason, our government sees us as invalid. Things such as not expanding Medicaid put us in a box: either apply for disability or don’t have access to healthcare. Either way, we are limited in our ability to function or lead a gainful life.

I’m a daughter and an aunt. I’m a student and a volunteer. I’m a mentor and an intern. Don’t ever make me just another statistic.


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Angelique Long is a 2018 AAPD Summer Intern. She interned with Families USA.

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