One bitter cold day in early February, I stumbled out of bed and braved the Boston MBTA subway system to make it downtown for a meeting hosted by the Boston Center for Independent Living on how the potential repeal of the Affordable Care Act might impact disabled people in Massachusetts who rely on Medicaid.
I sat myself in the front of a crowded room that included women in wheelchairs and men with canes. When the room went quiet, I could hear only the gentle panting of a dozen service dogs. Over the course of the next hour, the speakers got up one by one and went through the possible scenarios, while I fidgeted and frowned, taking notes when I could.
During the question-and-answer segment at the end of the seminar, a woman stood up to speak into the microphone. While leaning heavily on her crutch, she shouted into it: "Don't they understand if we don't have healthcare, we die?"
Another woman told the story of how she was once forced to live in a nursing home infested with cockroaches and substandard food that made her constantly sick to her stomach. It was only after she got on Medicaid, which covered the costs of her having a personal care attendant, that she could return to her beloved home.
I have hip and spinal damage and degeneration, so I took turns sitting and standing throughout the talk. When I went home, I collapsed in my bed for a few hours to sleep off the pain and the drain on my energy not only incurred by the excursion itself, but by the enormous anxiety over what may lay ahead for me without my current health insurance.
At first view, most people do not think I am disabled. I am a thinly built, thirty-something woman who is often mistaken for being in my twenties. I don't have any plainly visible tremors, physical anomalies, or a speech impediment. Sometimes I walk with a limp, but it is so subtle that many don't notice unless they're looking for it. I usually don't need any aides to help me ambulate, though the effort of standing or sitting for even short periods of time can send my muscles into extreme spasms that bring stinging tears to my eyes and have sometimes caused me to scream loud enough to bring my neighbors knocking at my door. I am a writer by trade, so this interferes with my ability to work. I survive by the meager income I bring in by freelancing when I am well enough to do so and by depending on several public-assistance programs to make ends meet.
Less than three years ago, my situation was much different. I was working approximately half-time for an environmental agency at a municipal government for a fairly generous hourly wage and also had a regular column at a well-known online publication. I was far from affluent, but I was what one might call middle class. I lived frugally and was even able to save some of my money. However, I was laid off of my municipal job at the end of 2014 due to town budget cuts. Only a few months after that, the freelance budget where I had my column was also gutted. My income was more than halved in an eight-month period.
Around this time, my health had started to seriously decline. Discs that had degenerated in my low back and neck had now herniated, causing nerve pain and numbness. My sacrum ached with spinal fluid-filled cysts. Fortunately, the Medicaid expansion made its way to Massachusetts just when things began to go downhill in my body and I was inducted into its folds.
Once there, I was able to finally access treatments and tests I never could have afforded otherwise. My doctors ordered labs and MRIs that indicated a slew of ambiguous autoimmune issues and the possibility of an underlying neurological condition. While I haven't been cured, my current health coverage helps me to manage my pain and maintain some functionality, allowing me to work and write much more than I would be able to without it.
But this is now being seriously threatened.
This past month, House majority speaker Paul Ryan released his plan to replace Obamacare, known as the American Health Care Act. The Act is coming to the House floor for a vote today, where its passage is uncertain. Nonetheless, its contents contain such destructive measures for people like myself that even a slim chance of it becoming a reality is enough to strike profound fear. In particular, the AHCA would roll back Medicaid expansion benefitting millions of Americans who now rely on it for lifesaving and sustaining care in the 31 states and the District of Columbia that adopted it.The AHCA would also cap Medicaid spending on a per-person basis, meaning expansion states will have more people on their rolls and a limited pot of money to cover them.
A major misconception is that Medicaid only serves able-bodied low income people. But according to a report released just last week by the Kaiser Family Foundation, more than three out of ten people presently covered under Medicaid are non-elderly adults living with disability, who in turn account for 42 percent of the program's expenditures. Comprising about 15 percent, or over 7 million people, of those enrolled in Medicaid, many of these disabled individuals are often unable to work traditional full-time jobs with due to their compromised health.
If anything, access to Medicaid has been found to enable low-income disabled adults to be productive in the workforce. A study published in the American Journal of Public Health at the end of last year found that people living in Medicaid expansion states were significantly more likely to be employed than those in non-expansion states. Before the expansion, some people with disabilities who had low-income jobs chose to stay unemployed in order to be poor enough to qualify for Medicaid and get help with their medical costs. The expansion allowed them to qualify for that insurance when they were making a little more money, but still not enough to afford their care.Yet, as noted by the Kaiser report, "Nonelderly adults with disabilities could be particularly affected by potential cuts, as many of them rely on Medicaid coverage pathways and services that are offered at state option."
Many assume that because I live in Massachusetts, I'm in the clear. After all, Obamacare was modeled after so-called "Romneycare," the 2006 healthcare reform signed into Massachusetts law by then-governor Mitt Romney which brought universal health coverage to the state. But that's not entirely accurate. Currently, coverage for Massachusetts residents on the Medicaid expansion is projected to cost the state $2.1 billion this year, with the federal government expected to cover 86 percent of the bill.
If the government cuts the strings on that aid, the state may not be able to shore up the funding.While Governor Charlie Baker has pledged funding to offset anticipated federal cuts to Planned Parenthood, he has made no such commitments when it comes to Medicaid. What that would mean for me is that I would likely get bumped off Medicaid and onto an insurance plan that covers less of the services I need and at a much greater cost. Since I already spend almost my entire monthly income on rent, this is a harrowing prospect—the choice between housing and healthcare.
And I am far from alone.
"I am barely paying my bills as it is," says Melanie, 51, from Medford, Massachusetts.
Melanie, who asked that her real name not be used, worked as an early elementary school educator for 25 years when she became disabled this past year from worsening complications of fibromyalgia and chronic lymphocytic leukemia (CLL). Fortunately, she was eligible for the state's Medicaid expansion, which fully covers her doctor visits, frequent medical tests, and her prescription medications. Like me, since Melanie worked for the state, she doesn't have work credits to qualify for Social Security Disability, as most state workers are exempt from making social security payments. This means Medicaid is her only viable option for comprehensive coverage.
"If I didn't Medicaid I would have to sell my house [to afford healthcare]," says Melanie.
Such concerns are even more pronounced for those outside of Massachusetts.
"When I didn't have access to affordable healthcare, my health suffered, which made my income suffer," says freelance writer and editor Shannon Luders-Manuel, 40, of California, who was able to get on her state's Medicaid program, known as Medi-Cal, after her income dipped due to health problems. She has arthritis and sacroiliitis and having health coverage helped her improve her work performance and take on more assignments.
"Like many individuals, I have a drive to succeed and provide for myself, and this can only be done when I'm able to have access to quality healthcare," Luders-Manuel says.
The message Paul Ryan and his colleagues are sending is that the lives of the disabled in the United States is of no value. To them, I and those like me are expendable, things that need to be disposed of or cast aside if we can't afford to pay for the privilege to live and be well. Ryan's plan is an affront to our rights as disabled individuals who deserve the dignity of decent healthcare, regardless of the bulk of our bank account balances or the weight of our wallets. It is with this in mind I plan to use every inch of my limited bandwidth to fight for our rights to continue to exist in the country where I sometimes feel invisible.
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