The White House wants to hear peoples' personal stories about the Affordable Care Act, a.k.a. Obamacare. I think I know what kind of stories they hope to hear, but the format of their inquiry allows for open-ended, freestyle response, so here what I submitted:
I have had physical disabilities all of my life. Until I was 22, I was on my father's health insurance. He was an independent pediatrician, and I'm sure paid for the family's health insurance out of pocket, though I have no idea at all how much he paid. From my perspective as a child and youth, as far as I know, we never had any problem getting my many surgeries, braces, hospitalizations, and therapies paid for.
Later, my father went to work in public health, and got the family's coverage through the county and later the state he worked for. When I aged out of family coverage, I was able to continue my coverage through COBRA payments, which were expensive, but necessary since going without health insurance was not an option, and a break in coverage would have created a "pre-existing condition" problem for picking up subsequent coverage.
When I finished graduate school I was able to get health insurance from my full time job. My disabilities were never an impediment to full coverage. I paid 20% of the premium for a pretty good plan.
In 2012, after a little over 20 years of full-time work, my disabilities altered and progressed in ways that made it necessary for me to stop working full time. I again continued my work-based coverage with COBRA for about a year. Then, through a combination of the Affordable Care Act and New York State's "Medicaid Buy-In" for working people with disabilities, I was able to qualify for Medicaid and continue to receive it while doing the part-time work that was within my capacities. Having gotten Social Security Disability, I also eventually was enrolled in Medicare.
At the moment, Medicaid and Medicare pay for the ventilator and oxygen concentrator I use every night while I sleep, and for medications I take every day to make my disability-related chronic health conditions controlled. These are life-preserving treatments, and they also make it possible for me to work to the degree that I can. Also, on average, I am hospitalized once every two years or so due to upper respiratory infections. There are effective treatments for this, but of course hospitalization is prohibitively expensive if paid for out of pocket. Without Medicaid, especially, I would be forced into a much more dependent situation and my health would deteriorate severely.
The Affordable Care Act was an absolutely crucial bridge from one work / health situation to another. And Medicaid itself is one of the main foundations of the life I live now. In the future, should I need everyday home care, I know that Medicaid will be there as no other insurance can ever be ... unless Medicaid is significantly cut or made into something less than a direct entitlement. The Affordable Care Act has been a tremendous benefit to me. And by making it possible for me to work to my changing capacities, it has enabled me to continue contributing to my community in the work I am able to do and the taxes I pay.
Disabled people in particular really need to talk in detail about not only Obamacare, but Medicare, Medicaid, and overall what health insurance means for us.