Recognizing that they don't have the votes for a full repeal of the Affordable Care Act, Republicans opted for a reconciliation bill that effectively picks the ACA apart, turning it into legislative Swiss cheese. At this point, it seems to provide more questions than answers about the future of health care in America.

That's especially true for disabled Americans, who have feared a Republican rollback of the changes that enabled them to access comprehensive health care—some for the first time. It now appears they were right to worry.

Approximately twenty percent of Americans, or 56.7 million people, identify has having some degree of disability. Many of them require specialized health care, from routine visits for relatively healthy people with stable impairments, to round-the-clock support for those who need help with tasks of daily living. Disabled people may have the most to lose with proposed reforms to the ACA—and, some fear, they also have a smallest voice in the conversation.

Several components of the GOP plan are particularly worrisome to the disability community, but the proposal to roll back Medicaid may be the single biggest concern. The ACA's Medicaid expansion, which extended coverage to those making up to 133 percent of the poverty level in states that opted into the program, increased health insurance enrollment in America by more than 14 million, and eliminating it will plunge people off a health-care precipice.

Justin Sullivan

The proposed system of "block grants" mean that individual states may run out of Medicaid funding before they've met the needs of their residents, likely triggering crackdowns on benefits eligibility as well as dreaded lifetime per-capita limits on recipients.

Namel Norris, a paraplegic gun violence survivor who performs with hip-hop group 4 Wheel City, lives in the Bronx and is eligible for Medicaid coverage to help him manage health care needs associated with his injury. "Every month and every day," he says, "I rely on Medicaid." He needs Medicaid-covered medical supplies to leave his house, he says, so without it, he'd be trapped.

Not having to worry about lifetime limits also enables his art, Norris says: Instead of being caught in a struggle to survive, he can focus on youth outreach and education and making music. It's hard to imagine doing that, he says, with threat of Medicaid being pulled out from under him. "My life would just change," Norris says. "Drastically."

Dominick Evans, a disabled filmmaker and activist, says he is particularly worried about what "drastic" might look like for disabled people who rely on Medicaid's Home and Community-Based Services program (HCBS). Disability activists have worked for decades to keep disabled people out of institutions, earning victories in the form of the Americans with Disabilities Act in 1990 and case law like 1999's Olmstead v L.C., which ruled that community-based services should be prioritized over institutionalization.

My life would just change. Drastically.

Changes to Medicaid could end up pressuring more people into institutional settings, Evans says, because caseworkers and states may decide that they aren't eligible for community-based services as part of cost-cutting measures. Research shows that home-based services are actually less expensive, but policies that effectively force people into institutions are a perennial problem. Attorney General Jeff Sessions has previously demonstrated a poor understanding of disability rights, making many in the community fear that he won't enforce people's right to live at home.

Alice Wong, a San Francisco-based disability rights activist, echoes Evans' fears about what may happen to her HCBS under Medicaid reform. She qualifies for In-Home Supportive Services, a California program that allows her to hire and train her personal attendants with state funds, giving her a degree of autonomy and control over her care. She's concerned about the loss of dignity and independence threatened by the GOP plan.

Continuously maintaining coverage without an individual mandate may be challenging, as costs will likely spike when more relatively healthy people stop contributing. While the Republican plan retains the ban on excluding enrollment based on preexisting conditions, author and policy advisor Day Al-Mohamed says that getting rid of the individual mandate may make it harder to get, and keep, insurance.

Those who lose their insurance will also face stiff penalties if they can't reenroll within 63 days. Vilissa Thompson, founder of disability rights group Ramp Your Voice!, fears that changes in the insurance landscape may make it difficult—or even dangerous—to quit or switch jobs. "If I decide to get another job," she says, "I might have to go back on Medicaid." It's not what she wants to do, but like many disabled people, she's caught in a snarl of policies surrounding entitlement programs—as Evans says, work too much and you lose your benefits. Work too little, and you can't afford to live.

Evans says he's effectively barred from marrying his partner if he wants to retain the support he needs to survive, because when disabled people marry, their benefits are cut. He uses a wheelchair and needs help from a personal care assistant for bathing, dressing, and other routine tasks. If his funds are cut, he says, his girlfriend will be forced to quit her job to care for him, which would hit their family hard financially.

The ten "essential benefits" enshrined in the ACA are also particularly important to disabled people, and the sunset clause affecting this provision in the Medicaid expansion could endanger millions. The benefits now at risk include not just basic needs like pregnancy care and prescription drugs, but also hospitalization, outpatient services, and rehabilitation. While many Americans need these services at some point in their lives, rehabilitation services—like those that helped Norris recover from his injury and maintain his independence—are critically important to disabled people, especially ones struggling with a new disability.

The essential benefits also include mental health care, which covers a huge number of disabled people as well as those who don't identify as disabled. Obama-era reforms expanded access to care for mentally ill people in need of therapy, medication, and other treatments. Rolling these reforms back may lead to fewer early interventions for mentally ill people, paired with an increased incidence of mental health crises that can lead to adverse interactions with police and increased costs for the state.

Justin Sullivan

Wong and Aditi Juneja, part of the team working on the Resistance Manual, a guideline to political involvement and self-protection in Trump's America, say they are especially concerned about the return of high-risk insurance pools, an approach Paul Ryan recently touted as an effective health-care solution for people who might otherwise have difficulty accessing insurance.

Such pools are designed to distribute risk to make insurance costs affordable, but it often doesn't work out that way. In states that have created high-risk pool systems, people who couldn't get insurance through other routes sometimes paid more than $1,000 a month for minimal coverage with very high deductibles. In some states, they were forced to wait on long lists to get into the pools in the first place. Some died in the process.

"This historically led to higher premiums for people seeking coverage and health systems," Wong says. "Plus, it's an artificial and ableist divide to separate 'healthy' from 'non-healthy, high risk' utilizers of healthcare, creating stigma and a tiered system."

Work too much and you lose your benefits. Work too little, and you can't afford to live.

Journalist Keah Brown says one of her biggest fears about an ACA repeal is somewhat less tangible than the particular policy changes: She worries it will expand the gap between disabled people from different social groups and classes. Whether acquired or congenital, disability often comes along with another identity that makes someone a target for marginalization. People of color are more likely to be disabled, for example, while disabled women face discrimination in pain management, and disabled trans people often have trouble accessing care. Black and Native disabled people have some of the poorest health outcomes, which creates a ripple effect of discrimination and inequality.

"There are many people of color with pre-existing conditions who would not have insurance" if not for the ACA, Brown says. "So often, in every aspect of our society, people of color are given the short end of the stick and expected to thrive with it."

"We are already not accessing mental health services, medical services," Thompson adds, in part because of a lack of health-care providers who have the cultural competency necessary to work in communities of color. The ACA helped mitigate some of these inequalities by making health services more accessible, and she and others fear the AHCA could roll all that back.

"My concern is that we will see resources disappear in the communities that need it most," Thompson says.

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