I drafted the op-ed piece below in an effort to explain why the proposed cuts to Medicaid in the American Health Care Act would be so detrimental to me and millions of others. Alas, the Times was not interested, but perhaps this is a more fitting place for it.
Soon after I turned thirteen, I was hospitalized with pneumonia and my parents confronted an agonizing choice: should they surrender their parental rights to ensure that I received the health care needed to ensure my survival? I was born with spinal muscular atrophy, a rare neuromuscular disability that severely weakens muscles and compromises breathing. I had several bouts of pneumonia as a child and had always managed to recover, but this time was different. My lungs had weakened to the point where I would need a ventilator to help me breathe. Doctors advised my parents to place me in a facility that could care for children with intensive medical needs.
Fortunately for me, my parents refused this option and eventually I returned home with a boxy yet portable ventilator on the back of my wheelchair (this was 1987, when most technology was still in its boxy phase). Caring for me wasn’t always easy for my parents. I’m essentially a quadriplegic and I need help with everything from bathing and dressing to scratching my nose when I have an itch. But thanks to Medicaid, they didn’t have to care for me around the clock. Medicaid provided nurses to take me to school, which allowed my parents to keep working. It paid for modifications to my wheelchair so that I could leave the house more easily. Without the supports provided under Medicaid, I would not have been able to finish college and move to Minnesota for law school.
Today, I’m 43; I live independently and work as an attorney for the State of Minnesota. My life is ordinary in the best sense of the word. When I’m not at work, I go to the movies (Logan was great!), check out the occasional concert (you really must see CHVRCHES live), and generally indulge my pop culture obsessions (that new Star Trek series had better be worth the wait). None of this would be possible without the excellent, round-the-clock care that I receive under Medicaid.
Medicaid has made my life immeasurably better, along with the lives of countless others. However, that isn’t stopping congressional Republicans from embarking on an ideological mission to starve Medicaid of funds. Last week, House Republicans unveiled a bill to repeal and replace the Affordable Care Act. The entire bill is a travesty, but its proposed changes to Medicaid are particularly troubling. First, the bill would gradually repeal the expansion of Medicaid for low-income adults without children. This provision would rob eleven million people of the health coverage that they gained just a few years ago. Many of the people who benefited from the expansion have chronic conditions such as diabetes or mental illness that previously went untreated. Medicaid. Second, the bill makes radical changes to the funding of Medicaid. It would establish caps on the amount of federal funding for each Medicaid enrollee. While this may seem like a technical change, it would dramatically reduce Medicaid funding over time. Under such a scheme, states like Minnesota would soon face budget shortfalls totaling billions of dollars and they would be forced to find savings by cutting services, reducing payments to providers, or both.
For people with disabilities like me, such cuts could be catastrophic. States could eliminate services that we depend on in our daily lives, such as personal care attendants or specialized equipment like communication devices. Those of us who are employed could lose the option to buy into Medicaid, forcing us to quit our jobs in order to preserve our health coverage. In some cases, we may face the dreaded possibility of institutionalization and isolation from our communities.
Republicans claim that these changes are necessary to “save” Medicaid and protect it “for the most vulnerable.” These claims are absurd and deserve no credence. Like any program devised by humans, Medicaid has its flaws, but the Republican bill would do nothing to address those flaws. The true rationale for these cuts to Medicaid is to pay for the repeal of the taxes on businesses and the wealthy that fund the ACA. The vulnerable people whom Republicans claim to champion are those who will suffer the most if this bill becomes law.
Medicaid has been instrumental in helping people with disabilities achieve lives of independence and dignity. Advocates have worked tirelessly to improve the program and its focus on providing services in the community. The Republican bill puts those hard-fought accomplishments in jeopardy and threatens real harm to those of us who depend on the program for our very survival. The only thing that Medicaid needs saving from is this vicious and mean-spirited legislation.