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How Trumpcare Turns Back the Clock on Disability Rights

To its great shame, the government is poised to reverse many of the victories disability activists have achieved.

Jennifer Keelan crawls up the steps of the U.S. Capitol on March 12, 1990. (Tom Olin/The Ability Center)

On March 12, 1990, eight-year-old Jennifer Keelan crawled up the steps of the U.S. Capitol. Keelan, who has cerebral palsy, crawled because she cannot walk—and because she needed Congress to pass the Americans with Disabilities Act. “I’ll take all night if I have to!” she said at the time. The Capitol Crawl launched by Keelan and other disability rights activists worked. Congress passed the ADA; then-President George H. W. Bush signed it.

Combined with the Individuals with Disabilities in Education Act (IDEA), the ADA helped ameliorate centuries of institutionalized discrimination against people with disabilities. Children with disabilities are now guaranteed a right to special education classes in public schools. Colleges may not reject applicants because they have disabilities. Employers must reasonably accommodate staff with disabilities. As a result of this legislation, people with disabilities are more integrated into society and have access to better, more humane care.

But the ADA and the IDEA didn’t end the struggle for disability rights in the U.S. Republican control of the executive and legislative branches in 2017 has proven just how tenuous these hard-won gains still are, exemplified by the House’s passage of the American Health Care Act earlier this month. If you thought the debate over disabilities was over, if you thought that we were on an irreversible trajectory of providing more protection not less, you would be wrong.

People with disabilities are still disproportionately more likely to live in poverty. More than 10 million disabled people qualified for Medicaid in 2015, according to the Kaiser Family Foundation, which means they’re particularly vulnerable to any fluctuation in Medicaid’s funding. The AHCA, then, poses a new and serious threat to people with disabilities. Disability rights advocates tell the New Republic that if the bill becomes law, it would roll back much of the progress activists have achieved.

For many people with disabilities and their families, Medicaid is an essential lifeline. As it’s currently written, the AHCA would take $880 billion from the program while cutting taxes for America’s wealthiest families. “Our families are scared,” says Julie Ward of The Arc, a non-profit that advocates for people with intellectual and developmental disabilities. “They don’t know what they’re going to do if there’s that deep of a cut.” According to Ward, Medicaid is “the primary funder” of long-term services for the families her organization represents. In-home assistance, physical therapy, mobility devices: These necessary but expensive services may not survive the Republican Party’s antipathy to Medicaid.

Ward worries that this signals a shift in long-standing government policy. “For 30 years, there’s been a commitment between the federal government and the states to provide services for these people and we see the federal government walking away from that commitment,” she says.

Cuts would also affect therapeutic options for children in special education. “I don’t know that most people understand that school districts get about $4 billion a year in Medicaid reimbursement for a variety of services to kids with disabilities,” says Curt Decker, the executive director of the National Disability Rights Network. “And what’s amazing is that it has nothing to do with health care or with premiums or anything that they say they’re trying to fix.”

Deborah Ziegler, director of policy and advocacy for the Council for Exceptional Children, says Medicaid-compensated services range from early intervention for young children with disabilities to assistive technologies and psychological help. “If Medicaid was not reimbursing for those services then the local school districts would have to pick up the additional cost,” Ziegler explains. “So where are they going to get that money from?” Possible options include raising local taxes—never a popular proposal—or simply cutting the affected services. Cuts, Ziegler says, “put school districts in jeopardy of providing a free, appropriate education for students with disabilities. It puts them in jeopardy of non-compliance with the IDEA.”

Medicaid cuts would also be disastrous for people who require treatment for rare diseases. These diseases—which the National Institutes of Health defines as any condition that affects fewer than 200,000 Americans—tend to be costly. Paul Melmeyer, director of federal policy at the National Organization for Rare Disorders, says that’s exactly why they oppose the bill: “We have been opposed to the AHCA since a little while after it was released to the public back in March. And we have been opposed to every iteration that has come out since.”

Rare disease patients are at risk because of the specific mechanisms the AHCA deploys to cut Medicaid. By implementing per-capita caps on Medicaid funding, the AHCA would disadvantage individuals who rely on treatments like orphan drugs—a designation the FDA awards to medications that do not create much profit for pharmaceutical companies due to the rarity of the diseases they are intended to treat. Orphan drugs are reliably expensive—Biogen Inc.’s new muscular dystrophy drug will cost $750,000 for the first year of use—so Medicaid access is an important source of financial support. Melmeyer says that under the current system, the federal government “retroactively looks at how much that Medicaid program spent over the prior year and then reimburses a certain amount. Under the per capita cap system, the state would theoretically be on the hook for the entirety of the cost of that orphan drug rather than just a percentage of it.”

The AHCA could also lead to the creation of high-risk insurance pools, which are meant to compensate for axing Obamacare’s requirements for pre-existing conditions. But this is another threat. “We really do need to emphasize just how expensive high-risk pools are,” Melmeyer insists. “There are estimates that in order to actually fully fund a high-risk pool we need upwards of $300 billion per year at the very least.” Otherwise, patients with rare diseases may be harmed if Health and Human Services allows states to exempt themselves from covering certain health benefits. If states choose to end the ACA’s community-rating system, they’d disadvantage people with pre-existing conditions even further.

“They claim that they’ve solved that problem. It’s very difficult to understand how that possibly happened,” says Decker of the National Disability Rights Network. Since rare diseases are often hereditary, several members of the same family may find themselves in the same precarious financial position because of their shared pre-existing condition.

So while the AHCA may not spell out discrimination against people with pre-existing conditions, those conditions could still cost Americans extra. Evidence suggests that people with such conditions have every reason to fear: Seema Verma, who now leads the Centers for Medicare and Medicaid Services, has long been antagonistic to the public programs she will now shape, and could allow states to make sweeping cuts to services. The Atlantic reported in February that as the CEO and founder of the consultancy firm SVC Inc., she helped design Indiana’s restrictive version of its Medicaid expansion. Verma’s plan required beneficiaries to contribute some funds toward their coverage. It’s been a disaster: Many low-income individuals haven’t been able to afford the state’s top tier of service, which means they’ve been bumped down to less expansive coverage tiers. “A full 324,840 people failed to make at least one of these payments in the relevant period, causing most of them to lose access to affordable dentistry and eye care—and knocking several thousand off of the insurance rolls entirely,” ThinkProgress reported on Tuesday.

Verma has also indicated that she’ll take a lenient approach to states who request coverage waivers. In a letter to governors written jointly with HHS Secretary Tom Price, Verma said states “are in the best position to assess the unique needs of their respective Medicaid-eligible populations and to drive reforms that result in better health outcomes.”

The Senate says it intends to scrap the AHCA and “start over.” But that is not reason to be hopeful. None of the bill’s reported 13 authors are known to be particularly friendly to the concept of publicly funded health care. Medicaid is still on the chopping block. HuffPost’s Matt Fuller reported on Monday that Senate Republicans are already working with the House’s most aggressive Obamacare opponents—the House Freedom Caucus—to create their version of the bill. And one Senate Republican expressed utter disdain for the very concept of publicly funded health care on Tuesday. “The public wants every dime they can be given,” Senator Orrin Hatch told CNN. “Let’s face it, once you get them on the dole, they’ll take every dime they can.”

The implication is obvious: People are takers, and welfare enables their basest instincts. This is false in general, but especially so when aimed at people with disabilities. They don’t buy yachts or McMansions with the aid they receive. They use it to access the basic services many of them need to flourish, or simply stay alive.

Further, there’s evidence that expanding Medicaid actually correlates to higher rates of people with disabilities in the workforce. A 2016 study in The American Journal of Public Health shows that people with disabilities were less likely to draw unemployment benefits in states that expanded Medicaid as permitted under the Affordable Care Act. The reason, the study’s authors say, is that these people no longer needed to be on unemployment to access Medicaid. When the ACA removed that obstacle, people went to work. Underfunded high-risk pools tend to have the opposite effect: More people leave the workforce and begin drawing disability benefits because they otherwise can’t afford health care.

The problem isn’t that these people are lazy. The problem is that health care is cripplingly expensive. Health care legislation must address that essential fact if it’s to benefit anyone, especially people with disabilities.

The AHCA may never become law, but its very existence is a disturbing reminder of persistent injustices. Nearly three decades after the Capitol Crawl, America still isn’t an equitable place for people with disabilities.