America’s Medicaid Trap
Most nondisabled people I meet seem to assume that the U.S. government provides disabled Americans all the services and supports we need to survive, and even thrive, as equal citizens. Once, when I was coming home from the grocery store, I lost my grip on my bags and had to ask a passing stranger to pick them up for me. He was happy to help, but remarked, “They should give you a helper for things like this!” I almost laughed. He was right, but I have a hard enough time convincing unsympathetic government bureaucrats that I need to go to the bathroom more than once every 12 hours each day — let alone that I require help with more mundane tasks like grocery shopping.
I’m twenty years old and a wheelchair user, and I need the services of a personal assistant to do some everyday activities like getting out of bed and getting dressed each day. If I and other disabled Americans are going to succeed in settings like work, home, and school, supports like these are an imperative. Unfortunately, though, they’re often withheld — keeping our success and inclusion far out of reach.
Few people outside the crip community seem to notice how much we suffer due to government negligence in service provision. I have friends who, like me, need help with most daily tasks, but are told by Medicaid that they qualify for only a few hours of assistance each week or sometimes none at all. One woman I know has to rely on her husband to help her get out of bed, shower, get dressed, and make breakfast before he leaves for work each morning She then restricts her water intake so that she doesn’t need to use the bathroom until he arrives home in the evening. Another sleeps in her wheelchair in her university dorm because she doesn’t have the means to pay someone to help her get in and out of bed. Yet another reduced his daily respiratory treatments to only 3 times per week when Medicaid cut his services. These stories are sadly, infuriatingly routine.
I’ve been the protagonist in more than a few. My most recent Medicaid care crisis (there have been far too many to fit into one essay) occurred last summer, roughly three weeks after the end of my sophomore year at Georgetown University. I was sitting at the kitchen counter at home when I received the devastating news that my Personal Care Assistant (PCA) hours were being cut by more than a third. These services quite literally make it possible for me to get out of bed every morning and do other everyday tasks — if I didn’t have them, I wouldn’t be able to live.
I had been fighting this cut for over a year with every resource at my disposal.The stakes were high: losing the appeal would mean that I wouldn’t be able to return to college in the fall, or live independently in any context. Instead, I would have to move back to New Jersey to rely on unpaid care from my family, likely forcing my Mom to quit her full-time job. For me, as well as my family members, every cut in my services put our wellbeing and way of life at risk. And my supportive family puts me in a place of privilege — for those who don’t have the option of turning to their families for care, their only alternative is moving into a nursing home for the rest of their life.
Throughout the course of the year-long appeal process, I had received favorable decisions from two independent medical review organizations and a Medicaid Fair Hearing Judge. All three thought that the cuts from Medicaid were unjust, and the Judge even called them “arbitrary,” noting that I was being penalized for not fitting into Medicaid’s model of what a disabled person’s life should look like: homebound, inactive, and with only the most limited support I’d need to keep breathing.
But these decisions were ignored and then reversed by the Director of the Division of Medical Assistance and Health Services, a state agency that administers Medicaid. Without ever having met or spoken to me, he made the decision that the hours of help I was receiving for the previous two years consisted of “supervision and companionship” — in other words, implying that I was attempting to swindle the government into paying for me to have a babysitter or a friend.
Both of these accusations have strong ableist undertones, playing into the stereotype that all disabled people desperately seek the guidance and friendship of nondisabled people, and will go so far as to commit Medicaid fraud in order to get them. It also meant that the Director had either willfully ignored the testimony of both my doctors and the independent doctors who reviewed my case, or perhaps had not even read those in the first place. Either way, he had made a decision that, if it stood, would have ended my pursuit of a college education and prohibited me from ever living independently.
When I read the outcome of my case, I sat at my kitchen table and cried. The lingering fear I had lived with since moving to college, which intensified sharply for the span of the appeal, had finally come true. I fought my state’s Medicaid system for over a year before I was able to make it to school, finally getting my services into place only a few short weeks before freshman move-in day. This struggle, though stressful and unjust, made me acutely aware of how lucky I am to have made it to Georgetown. Experiencing the joy and independence of college has broadened my horizons and perspective to an indescribable extent, and it’s shameful that so many disabled Americans are denied this opportunity. I was devastated at the prospect of having to drop out and leave.
And in that moment, it felt inevitable. How could I have been so stupid to think that the world would just let me do what everyone else does and go away to college, graduate, get a job, live on my own? The signs had been there at every stage of my life, threatening that eventually there would be a bureaucratic battle with Medicaid that I just couldn’t win. There are only so many times that my family and I could expect to stand up to my multi-billion dollar Medicaid insurance company and win. So I cried, called my Mom, and then cried some more.
And then, I got to work. Despair, helplessness, and desperation are close siblings of anger and rage — a lesson that many disabled people know quite well. Despite the fact that this was the first appeal that I had actually lost and the decision was seemingly final, I wasn’t about to go down without a fight. Through puffy eyes and shaky hands, I retraced the routine I had pursued more than once before: call my State’s disability rights organizations to try to get them to take my case pro bono, research the laws and regulations cited in the decision, call and email local reporters to see if they’d be willing to share my story.
I also wrote about my situation on Twitter, in a spontaneous flurry of tweets cobbled into a thread about what was happening: “As a disabled woman & wheelchair user, I’ve been fending off my insurance company’s cuts for years. Today, they finally got [the Medicaid Director] to side with them—and now I can’t go back to college next semester. The American healthcare system has just, quite literally, ruined my future … I can’t tell you how many of my disabled friends have suffered through the same awful situation. I can’t tell you the panic I feel, knowing that I might not have the help I need tomorrow or the next day, and that my needs might become a burden to my family.”
And I got lucky; nearly 2.5 million people saw those words, and media attention started pouring in. I had already gotten several local reporters to share and investigate my story, but now I was being approached by Forbes, Today, and other national outlets. Although some reporters captured the situation with nuance and skill, others didn’t seem to understand the bigger picture. Despite the fact that I sprinkled my story with equally-concerning situations of my disabled friends, and repeatedly argued that this problem was far bigger than me, many of the articles and features framed my problem as unique — an outrageous fluke in the system — rather than the unacceptable norm.
Many of the comments from disabled readers point towards the same sentiment: “I’m actually fighting that same battle here in Iowa.” “This happened to my mom and I. They just ran us in circles until we both collapsed.” “I see this everyday, everywhere, with every patient.” Testimonies like these and endless supportive calls and texts from fellow crip activists helped to guide and sustain me during an otherwise stressful and scary period of time.
Hundreds of people also reached out to ask how they could help — most wanted to donate to a GoFundMe, hoping to collect the funds I’d need to pay for the services that were being cut. But even given the unlikely possibility that such a strategy would raise enough money to cover my next two years of school (and then, I suppose, the rest of my life), I knew that this would let Medicaid off the hook for providing the services that are my civil right. I would be throwing away the opportunity to push for real reform, settling for a short term solution for me while betraying others in similar situations who didn’t have the media coverage and support I had. We shouldn’t stand for forcing more disabled people to replace their legal right to healthcare coverage with desperate crowdfunding.
In the end, the buildup of media coverage pressured New Jersey’s Department of Human Services into approaching me with a settlement: I would get to keep my previous level of services, and be protected from further cuts until I graduate from college in two years. It certainly wasn’t generous, but I saw it as an admission of wrongdoing on their part and my only lifeline to get back to college in the fall. Besides, I had started to work with my local legislators on several pieces of legislation that will start the long process of preventing this from happening to others.
My success in this situation is unequivocally due to a mix of hard work, luck, and an immense amount of privilege. I come off as a sympathetic victim: a young white woman, with a disability that’s easy to understand, who fits into ableist ideas of what it means to be “functional” by attending college and working. I also had a lawyer from an experienced medical nonprofit helping me, free of charge. Most disabled people have few of these advantages.
To make sure that these types of injustices stop happening, we’re going to have to implement serious policy reform. Promoting home-based Long Term Supports and Services (LTSS) — the technical name for the help I need to live each day — is a must for ensuring that we have the ability to live independently in our communities. The alternative, for Medicaid and even private health insurance companies, is locking disabled Americans in nursing homes — a practice that is proven to be more expensive and more abusive (see also: here, here, and here) than providing LTSS in our own homes.
At the federal level, we need to pass the Disability Integration Act, which would protect our civil right to live and receive services in our own homes. At the state level, we either need to eliminate or seriously reform the managed care model. Many states have turned to managed care to reduce healthcare spending, essentially privatizing Medicaid by paying private insurance companies to administer the system. This has repeatedly exposed disabled beneficiaries to cuts in services from entities looking only to widen their profit margins. Barring the elimination of this system altogether, we need to create monitoring programs for managed care organizations, increase consumer protections against cuts, and make performance-based incentives and penalties tied to health outcomes and evaluation by beneficiaries. We also need to reduce the variability in Medicaid regulations across U.S. states, which creates unjust inequalities in services depending on where we live. And across the board, we need to increase representation of disabled policymakers in discussions about healthcare.
Because Medicaid systems differ in each state, other opportunities for reform will need to be evaluated and implemented on a case-by-case basis. In New Jersey, I’ve worked with my state legislators to come up with five bills that will close some of the gaps in services and protections. But while these measures may help, it is unlikely that they will fix the problem entirely. No amount of legislation will change the attitudes of bureaucrats who fail to return my calls, give me false information about available services, and refuse to believe the claims of my doctors regarding my needs. We can’t legislate respect or anti-ableism into existence.
My experience taught me that despite the fact that our Medicaid system is extremely flawed, public opinion is often on our side. Most nondisabled people aren’t even aware that issues like this exist, but they can be powerful allies once they find out. I would encourage other disabled people facing similar struggles to share their story with local legislators and journalists rather than attempting to go it alone. Not only does this give you more leverage in the fight against powerful bureaucracies and insurance companies, but it has the potential to help others in our community who may not have the opportunity to speak out.
Above all, I hope the well-publicized nature of my situation will draw attention to the systemic problems that plague Medicaid’s disability programs. Ever since I can remember, my life has been periodized by jumping from healthcare crisis to crisis, each created by the inability of the system to accommodate the lives of the disabled people it was made to serve. It’s not because our ambitions are any different than those of our nondisabled peers, but rather precisely because they’re the same. Current Medicaid practices dictate that people who look like me, move like me, and function like me aren’t supposed to wake up every day and want to do the same things as everyone else. It’s about time we change that, and rebuild a system where we don’t have to fight for our right to thrive.
Anna Landre is a student at Georgetown University majoring in Regional and Comparative Studies with a focus on Latin America. She serves the Washington, DC government as an Advisory Neighborhood Commissioner for district 2E, and is also a disability activist focusing on the social and legal barriers faced by disabled people in the United States and Latin America. She is the co-chair of the Democratic National Committee’s Youth Disability Council and a founding member of the Georgetown Disability Alliance. Her advocacy efforts have been featured in outlets including the Washington Post, Forbes, and others.
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