Cerebral Palsy Didn't Stop This College Junior. Obamacare Repeal Might.

Here's what cutting Medicaid could mean for people with disabilities.

HILLIARD, Ohio ― Justin Martin, 21, is in many respects a typical junior at Kenyon College. He lives in an off-campus apartment, which he shares with six other guys. He’s majoring in English, helps run a student improv group, and last semester he took five courses instead of the usual four ― a “terrible idea,” he now concedes. Sometimes he pulls all-nighters to write papers or study for exams, drawing sustenance from soda and chocolate-covered almonds. And sometimes he stays up late just to have long arguments with his roommates ― like over whether it’s OK to ban campus speeches by white supremacists (Martin says no) or whether the seventh Harry Potter novel was the worst (Martin says yes).

But in one respect, Martin is unique on the Kenyon campus and rare among college students in general. He has cerebral palsy, the disorder in which damage to the brain impairs muscle movement. Martin cannot walk or care for himself without assistance. His life in college ― getting to room with his fellow students, carrying a more-than-full course load ― is a testimony to many things, including supportive administrators and his own stubborn determination. But, Martin says, none of this would be possible if it wasn’t for the help of government programs. And perhaps the most important among them is Medicaid, the federal-state health insurance program that provides coverage to the needy, including people with disabilities.

Most people think of Medicaid as a program for able-bodied, non-elderly adults and their children ― a form of “welfare” that some Americans tolerate and others resent because they think, rightly or wrongly, that it’s subsidizing people too lazy to work. But one-third of the program’s spending is on people with disabilities. Although they account for a much smaller fraction of Medicaid enrollees, there are roughly 9 million people in this category, and almost all have unusually severe health care needs. On average, Medicaid spends more than four times on somebody with disabilities than it does on an able-bodied adult.

Alissa Scheller/HuffPost

Martin is living at his family’s home on the outskirts of Columbus for the summer. When I visited him there recently, he pointed out some of the places that Medicaid money goes. There is the lift-and-pulley system that operates along a track in the ceiling, similar to the one in his campus apartment. It takes him from his bedroom into the bathroom when he needs to use the toilet or take a shower. To get around, he uses a motorized wheelchair that can change its shape in order to stretch out his legs or make him stand. For longer trips, there’s a van with a lift for the wheelchair. Martin can’t be truly alone, because he requires help with some basic functions ― a list, he frequently notes, that includes “wiping my butt.” That means paying for caregivers who, at school, must be on call around the clock.

Buying and installing the equipment costs many thousands of dollars. Paying those caregivers costs many thousands more, on an ongoing basis. Martin’s father, who lost his factory job several years ago, drives trucks for a living. His mother, who used to work in state government, now has a job at a university. That position provides health insurance, but the plan, like most commercial insurance policies, wouldn’t cover the array of equipment and services Martin needs ― especially the ones that allow him to live independently. Medicaid, in combination with some other government programs, does. And now some of that coverage is at risk because of Republican efforts to repeal the Affordable Care Act.

The American Health Care Act, the bill that the House of Representatives passed in May and that the Senate is now using as the basis for its repeal legislation, would cut approximately $1 trillion from federal health plans over the next decade, according to the Congressional Budget Office. Although few people realize it, a portion of that cut has nothing to do with “Obamacare” per se. It’s the creation of a different funding formula for Medicaid that would affect the entire program. The purpose of this change is to limit the money Washington sends to the states in order to finance their programs. Conservative lawmakers want to scale back the funding even more, either in the repeal bill itself or in subsequent legislation.

The champions of this legislation, including Trump administration officials like Health and Human Services Secretary Tom Price and Republican leaders in Congress like House Speaker Paul Ryan (R-Wis.), deny that these cuts would hurt people like Martin. They say eliminating recent Medicaid expansions and putting the program on a tighter budget would ultimately make it more financially sustainable. And they say that states, given more flexibility over how to manage Medicaid within their borders, would respond by finding ways to innovate. “We believe strongly that the Medicaid population will be cared for in a better way under our program,” Price said during a CNN interview in May.

It’s impossible to disprove these claims. But Medicaid’s history offers reason to be highly skeptical. Funding for the program is already threadbare. And plenty of state officials ― mostly, though not exclusively, Republican ― already want to reduce their share of Medicaid appropriations even more. Cuts at the federal level could embolden these officials, or merely force them to respond in kind because of how the program’s financing works. Either way, coverage for disabilities would be a likely target for cuts, in part because that coverage represents such a large fraction of program spending now.

“It’s almost incomprehensible what would my life look like without these services, because there would be no ‘my life’ without these services.”

- Justin Martin describes how Medicaid has influenced his life

Martin knows all about this because he’s watched such efforts play out in Ohio, as state lawmakers have tried to limit spending on programs that affect him. And although he realizes that Medicaid has some big problems, as all large programs do, he thinks few people understand the critical role it plays for people like him ― or the threat that even relatively modest funding cuts pose.

“Really there’s not a single area of my life that hasn’t at some point come into contact with Medicaid dollars,” Martin says. “It’s almost incomprehensible what would my life look like without these services, because there would be no ‘my life’ without these services. It gets impossible to disentangle.”

How Medicaid Quietly Became So Essential

Medicaid has been around for a little more than 50 years. For most of that period, it has been something of a political afterthought. Former President Lyndon Johnson didn’t even mention Medicaid when he signed the bill creating it, instead focusing on Medicare, the program for seniors that the same legislation authorized. Over time, Medicaid grew gradually and frequently without fanfare, with lawmakers like former Rep. Henry Waxman (D-Calif.) quietly slipping amendments into larger pieces of legislation in order to expand eligibility or services for children and low-income adults.

Sometimes people with disabilities benefitted directly from such initiatives. And sometimes they benefitted indirectly from other policy changes. Legislation in the early 1970s created a new federal standard for disabilities and, in the process, made millions of people with mental or physical impairments eligible. In the late 1990s, the Supreme Court ruled that states had an obligation to provide people with disabilities a chance to live independently. Most states used their Medicaid programs to comply, by expanding their versions of the program to cover more services outside of institutions, whether in the home or in the community more generally.

All of these expansions have filled critical needs. Lawmakers added coverage of extra medical screenings for children in response to studies showing that poor nutrition, exposure to environmental hazards, and other conditions associated with poverty put these kids at much greater risk of disease and developmental delays. (These screenings would later yield the data that allowed a Michigan public health expert to expose the Flint water crisis.)

The law creating Medicare created Medicaid, too, but Medicaid has mostly been a political afterthought.
The law creating Medicare created Medicaid, too, but Medicaid has mostly been a political afterthought.
LBJ Library

A similar rationale was behind the expansions of services for people with disabilities. The changes followed exposure of wretched conditions in group homes ― and a growing realization, backed by science, that people with mental and physical limitations can not only live at home but also hold jobs and participate in everyday activities.

The transformation for people with disabilities has been dramatic, if still incomplete, as Martin knows. “Do you want to live independently in your home with your family or in college, or do you want to live in a crappy group home with black mold in the walls that looks like it’s about to keel over any second?” he says. “That’s really the stark reality of what we are dealing with here.”

Providing these services generates large bills. Because Medicaid is an entitlement, the federal government’s commitment to paying those bills is open-ended. Washington offers matching funds to states and, as long as states abide by the program’s rules, the federal government provides however much money it takes to cover everybody who becomes eligible. Over the years, that’s become more and more expensive. Today the program accounts for roughly 10 percent of the federal budget. For states, it’s 15 or 20 percent of total spending, on average, depending on how you count.

Republican Plans Represent A Fundamental Change

Conservatives have responded to Medicaid’s growth by fighting to limit the government’s financial exposure. In the 1990s, then-House Speaker Newt Gingrich (R-Ga.) and Republicans proposed that the federal government give state officials fixed sums of money each year, based on a predetermined formula, regardless of how expensive care for the Medicaid population had gotten or how many had enrolled. The effort failed, but the idea of transforming Medicaid funding has been a cornerstone of Republican budgets under now-House Speaker Paul Ryan (R-Wis.). It’s a crucial, if underappreciated, feature of the American Health Care Act. Under the legislation’s terms, states would have two options for Medicaid funding going forward ― a newly modified version of the Gingrich “block grants” or a system of “per capita caps.”

Under the per capita caps, the federal government would use a predetermined formula to set the level of its contribution towards state Medicaid programs. That contribution would be on a per-person basis, so that the total federal contribution would vary with enrollment ― rising as more people sign up for the program, falling as fewer do, and thereby making the system more sensitive to changing economic conditions than a block grant would be. House Republicans also set the caps at levels designed to soften their blow ― by, among other things, allowing for the relatively higher expenses from Medicaid’s aged and disabled population. At least initially, the caps might be high enough that the federal contribution would come close to what most states would spend otherwise.

But the whole point of introducing a per capita cap is the same as introducing a traditional block grant ― to apply some kind of limit to what government spends on Medicaid. The wonky particulars of the formula (like using 2016 as a base year for calculations) mean that, over time, the gap between those caps and the expense of maintaining today’s coverage levels would likely grow, and that’s assuming the cap in the House bill doesn’t change. Conservative senators are already lobbying hard to tighten it. Even if they don’t succeed, the mere existence of a cap would give lawmakers a simple, potentially more palatable method for dialing back federal contributions in the future. Having brought the cap into existence, they could simply lower it. The federal budget proposal that the Trump administration released last month calls for doing just that.

“It’s like cutting your fire department budget while your house is on fire. It doesn’t get rid of the fire. It just gets rid of your firetruck.”

- Martin on Republican plans to cut funding for Medicaid

The Republicans most enthusiastic about these cuts, and the intellectuals who agree with them, say that restricting the money that states get for Medicaid would prod them into eliminating waste and spending their dollars more judiciously. Even the program’s most ardent defenders would concede it could use improvement. But overall, Medicaid is already an extremely lean program, paying less for medical services than either Medicare or private insurance does. The program’s total, per-beneficiary costs are also rising less quickly than those costs in those other insurance programs.

Medicaid’s most glaring weakness is that many beneficiaries struggle to find specialists willing to accept such low payments ― an issue that Republicans frequently cite when they defend their agenda, as if their reforms would make the problem better. In reality, spending less on Medicaid is bound to make that problem worse. The same goes for other parts of Medicaid that specifically serve people with disabilities and currently have waiting lists because they lack funding to handle more enrollees. (Some conservatives have suggested the Affordable Care Act has made the waiting lists longer, by diverting state money into the expansion of coverage for able-bodied adults. The data does not support this.)

“Cuts in disability spending don’t make the overall number of disabled people requiring services in the state go down,” Martin notes. “Those people are still there. There’s just less money for them. … It’s like cutting your fire department budget while your house is on fire. It doesn’t get rid of the fire. It just gets rid of your firetruck.”

What GOP Plans Would Mean For People With Disabilities

It’s impossible to predict exactly how each state would respond if federal matching funds for Medicaid began to decline. Republicans are telling the truth when they say their proposal would give state officials more discretion over how to allocate Medicaid funds. In theory, those officials could leave services for people with disabilities alone while seeking cuts elsewhere. A few states might actually use the cuts as an impetus to rethink the structure of their Medicaid programs, in order to deliver better, more efficient care. When the right conditions exist, states have found ways to innovate before.

But if history is any indication, the vast majority of states would respond in cruder, simpler ways. They would probably start by trimming further what their programs pay to care providers. After that, they would likely seek to reduce coverage itself. Benefits for people with disabilities would be an obvious target, because that’s where so much of the money is and because key services like home- and community-based care are among those Medicaid treats as optional, making it technically easy for states to scale them back.

“They’re not optional for [the beneficiary] but they’re optional for the state,” says Andy Schneider, who spent decades working on Medicaid in Congress and for the Obama administration before joining the faculty at Georgetown University. “And the state is going to be under relentless pressure, year after year, to find ways to reduce its spending.”

It’s even possible that cutting federal contributions to Medicaid could have precisely the opposite effect that conservatives hope it would ― stifling innovation, like the ongoing effort to move people out of institutions, rather than fostering it. “Those reforms require upfront investments in order to produce savings over the long-run, something states can’t do when they have to make immediate across-the-board cuts in response to the House bill’s cost-shifts,” Edwin Park, vice president for health policy at the Center on Budget and Policy Priorities, says.

“We know where the cost lies in Medicaid ― it lies with the aged and disabled.”

- John Corlett on the people Medicaid cuts would harm the most

Advocates in Ohio are similarly wary of promises that the Republican health care bill would spare people with disabilities from harm. “We know where the cost lies in Medicaid ― it lies with the aged and disabled,” John Corlett, who ran the state’s Medicaid program before he became president of the Center for Community Solutions, says. “They are vulnerable, they are the most dependent on those Medicaid services, and the effect on them could be much more profound.” In fact, says Michael Kirkman, executive director of Disability Rights Ohio, the real question is how, not whether, the reductions have an impact. “I am confident that cutting Medicaid funding to the state will harm people with disabilities in some fashion, I just don’t know what that is at this point,” he says.

Recent history in the state suggests these fears are well-founded, as Martin can attest. In 2015, as a high school student, he testified before state officials about the potential impact of a proposal to eliminate Medicaid payments for some of his care workers. Earlier this year, he was back in Columbus to protest yet another proposed cut to home care workers ― this time, with a posse of Kenyon classmates alongside him. “There are few people who deserve to be at Kenyon every day, few who have fought to be here and worked their assess off to be here the way that Justin has,” one said of Martin. Another student, one with autism, testified about drawing courage and inspiration from Martin’s presence on campus.

Ice cream at the campus bookstore, with Martin on the left.
Ice cream at the campus bookstore, with Martin on the left.
Courtesy Martin Family

Martin’s activism has generated coverage in local papers and, of course, the Kenyon Collegian, though he has mixed feelings about the publicity. “I don’t want to be the person that has to talk about politics and defend my basic humanity over and over again. You know, I have friends, I watch movies, I eat a lot of Cool Ranch Doritos. Everybody deserves to live a life independent from politics,” he says.

But Martin also knows that many people are even more dependent on Medicaid than he is. “I’m actually sort of an easy case when it comes to disability. [Medicaid benefits] allow me to live a full and happy life, allow me to be clean and independent and safe. But they don’t literally, fundamentally keep me alive. They’re not oxygen, or life-saving medication." And many of the people who depend on those things, Martin knows, "don’t have the luxury of going down to the state house to speak.”

The Medicaid Debate Is Bigger Than Medicaid

The alternative to cutting Medicaid, as Republicans now propose, is funding it at current levels or beyond. That entails its own tradeoffs. Money for the Affordable Care Act’s Medicaid expansion comes primarily from cuts in what Medicare pays providers and insurers, along with taxes that fall on the wealthy and health care corporations. Republicans plan to repeal those taxes. The rest of Medicaid draws on general revenue, which means the federal government pays for it with some combination of taxes, reduced spending elsewhere and higher deficits.

Martin has thought a lot about how to defend such a large fiscal commitment to Medicaid in the current political climate ― a time when the House speaker recalls dreaming up Medicaid cuts as a college student while jabbering over a keg of beer, and a candidate for president openly mocks a reporter with disabilities yet still manages to win the election. One answer is that misfortune can happen to anybody; in Martin’s case, the misfortune was an extremely premature birth and a damaged cerebellum. And when misfortune can happen to anybody, everybody benefits from a truly protective safety net.

Another answer is that society is richer, metaphorically and literally, when people with disabilities are able to study, work and contribute their skills and talents. For Martin, that means becoming an English teacher, ideally at a public school. “What appeals to me about public education is you take everybody,” he says. “You take the people that get passed over, because I was that kid.”

But ultimately the debate over Medicaid’s future is really a debate over whether America should keep trying to fulfill the basic promise it has made over the past half-century ― not just to those with disabilities but to all groups covered by Medicaid, and to seniors in Medicare, and most recently to the children and working-age adults who have gotten insurance through the Affordable Care Act’s expansion of coverage. It’s the promise that access to health care ought to be a right, something every person should have regardless of financial or physical status, and that the American public as a whole will find some way to meet that obligation.

The essence of the Republican argument on health policy, once you strip away all the jargon and step away from all the policy minutiae and see the agenda as one, unified whole, is that America can’t or shouldn't make that kind of commitment. Whether you agree with that position is a question of values and priorities, not facts. For people like Justin, your answer matters a lot.

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