When people ask me what it’s like being on Medicaid, I tell them it’s… fine. Sure, I get the basic necessities and bare minimum I need to survive, but after that, there’s not much else. Everything ends up turning into a fight. Wheelchairs take six months to a year to get, and I can only receive a fresh supply of sterile medical supplies, such as ventilator masks and mouth suction tubes, four times a year. But these singular inadequacies pale in comparison to the struggle to receive long-term care.
Long-term care (LTC) is the combination of services that give people with disabilities the freedom to live in their own homes and communities without the fear of being left alone. Those who need it, like me, can receive assistance with dressing, bathing, running errands, prepping and eating meals, and many other basic daily activities. With LTC, these tasks all get done without having to worry about the constant care of loved ones.
In my case, I get through the day with substantial help from both LTC services and my parents;others who don’t have relatives with the free time to help aren’t so lucky. Without LTC, people with disabilities would be forced to move into institutions like nursing homes, where the quality of care would be mediocre at best and the risk of injury, neglect, abuse, and death would dramatically increase. Not only is it dehumanizing and inhumane to force the most vulnerable people into situations like this, but it is criminal to do so knowing the likely harmful outcomes.
I consider myself lucky to live in New Jersey, a state whose Medicaid is much better than that of other States. Medicaid is operated by the individual States, who decide how to spend federal dollars . Unfortunately, becoming eligible for and receiving LTC can be quite difficult. To be approved, you must have an assessment and prove how disabled you are in addition to quarterly visits from a government nurse to verify your disability. After you’re approved, you then have another assessment (usually conducted by the same person) to determine how many hours of care you will receive per week. In New Jersey, they say that the maximum hours of care you can receive per week is forty. Apparently, our lives are a typical nine-to-five job. When I was first assessed, I was given thirty-five hours, but luckily, my mom had her hip replaced, and I was graciously awarded five more hours, hitting the “limit.” No one told me about the extra hours for months.
The system is not much better for those who care for people with disabilities. Personal care assistants, or PCA’s, run through a revolving door of employment, mostly due to the job’s incredibly low average pay of eleven dollars an hour and lack of benefits. One of my PCA’s, Kyle, was forced to move back home after his own medical issues nearly caused him complete financial ruin. With him now living down the street from me, I told him, while he was holding me on the toilet, that he should get paid more for taking care of me. Unfortunately, for Kyle, and thousands of other personal care assistants, this important job is not nearly enough to support oneself.
Currently, I have been trying to move out of my parents’ house and move in with my girlfriend. Because she works a job with long hours, I need more than forty hours of care per week. However, in over a year of attempts, Medicaid has told me that I’m not disabled enough for more PCA hours. Let that sink in.
Not. Disabled. Enough.
I haven’t walked in almost twenty years, I can’t feed, bathe, or clothe myself, and I can’t reach the television remote if it’s more than six inches in front of me. I use a ventilator all day and night, require suction due to difficulties swallowing, and need help positioning myself in my wheelchair. If you look at me, you’d think I should have died yesterday. But, according to Horizon NJ Health, I’m not disabled enough to have someone with me to make sure I can eat and not piss myself for more than forty hours a week. This dilemma is compounded by my parents getting older and their health quickly declining.
So what can be done to change this? You already know: Medicare for All. It should be self-explanatory, but it needs to be said that Medicare for All will only work if it is truly for all. As Senator Bernie Sanders and Congresswoman Pramila Jayapal have already acknowledged, any single-payer healthcare bill without provisions for long-term care is unacceptable. Even this measure is just the beginning of achieving true health justice for people with disabilities. Free and accessible housing, universal mass transit, and better access to assistive technology are just some of the things in addition to Medicare for All that society needs to attain real health justice.
None of this can happen in a capitalist system because as long as there is money to be made from exploiting people’s healthcare needs, people with disabilities will suffer. My experience with Medicaid—which is fairly universal—has taught me that anything and everything will be done to keep me from getting what I need if it means saving a few dollars. What’s frightening is that a single vote in Congress to cut Medicaid funds could make everything so much worse. A broadly popular universal healthcare program that’s hard to undo would make our lives much less precarious.
As socialists, we are supposed to look out for the well-being of everyone. People with disabilities are no exception, especially as it is harder for us to get a seat at the table when discussing issues like this.
On second thought, Medicaid isn’t fine.
Written by Steve Way. You can read more of their work at thesteveway.com. To learn more about North Jersey DSA, follow them on Twitter.