Republicans may have delayed the vote on the senate's health reform bill, but this battle isn't over. One of the most colorful faces of health care in the news this month has been disability rights group ADAPT, thanks to a series of high profile protests in Washington and across the country. Wheelchair users being dragged out of their chairs makes for good headlines, but the real story isn't the civil disobedience leading to arrests: It's why people are showing up to protest in the first place.
Disabled people are fighting for their freedom, and their lives. Republican threats to Medicaid are ringing alarm bells for disabled activists, especially those seasoned with decades of experience. This entitlement program is a lifeline for disabled people, and they're worried their worst nightmare is about to manifest: A return to mass institutionalization for the disability community.
Millennials may be accustomed to seeing disabled people out and about in society, from the kids who attended school with them to people they spot on public transit. Signage about accessibility may feel ubiquitous, while ramps and curb cuts are just part of the urban landscape. These sights are actually comparatively novel in America, because well through the 1980s, disabled people were warehoused in institutions, locked away from society.
In the 1980s, groups like ADAPT and ACT UP—a radical HIV/AIDS activist group—pushed for deinstitutionalization and greater inclusion in society. They won a major victory in 1990 with the Americans with Disabilities Act, landmark legislation that included key antidiscrimination protections for the disability community. Those protections were leveraged less than a decade later in a landmark Supreme Court case, Olmstead v. L.C., which found that forcing disabled people into institutions violated the ADA.
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Sound like a bunch of boring legal mumbo jumbo? It was a big deal for the disability community, which finally had ammunition to, in the words of ADAPT, "free our people." Historically, Medicaid could just refuse to pay for the care people needed to live in their communities, de facto forcing people into institutions. Now, when community-based living is "appropriate," Medicaid is required to provide what are known as home and community-based services (HCBS) to people who ask for them. At least, in theory.
Many disabled people, quite reasonably, do not want to be institutionalized, and they've fought hard for the Medicaid benefits that allow them to live out and about in society as equal citizens. Oddly, some state Medicaid programs have been very resistant to providing HCBS, despite the fact that they're actually cheaper than institutionalization. A lot cheaper. In fact, there's compelling evidence to suggest that for cost-conscious states, institutionalization should be avoided when at all possible.
So what does all this have to do with wheelchair users camping out in congressional offices and refusing to move? Republicans are proposing to cut $772 billion from Medicaid, a move they say will save the federal government a bundle of money. It's going to do so at the cost of people who need services, however.
Disability rights activists are concerned about several potential factors that may collide to force people into institutions. The first is how reductions in federal funding for Medicaid may affect in individual states, who may opt to cut some vital services that people need to live independently. That includes home care, durable medical equipment people need for mobility, and more. Medicaid can decide that a person's case for living in the community doesn't fit the standard, and refuse to pay for anything but residential long-term care.
There's another issue that has people worrying, though, and it's even more sinister. Medicaid cuts will also cause health care delays. "Another less talked about way that this works is through people no longer being able to access preventative care and maintenance and then needing inpatient/long term care treatment because their (our) conditions have gotten so bad that they actually do require inpatient care," explains Katie Tastrom, an attorney and social worker. "Obviously along with physical disabilities, this is also especially true for mental health disabilities since decompensation after treatment is stopped abruptly can be deadly."
In other words, the government is going to make disabled people so sick that they have no choice but to pursue inpatient care. Tastrom notes that, in a way, institution in these cases is turning into a warped best case scenario, because it means that people have survived lack of care and bed shortages long enough to be placed in a long-term care facility.
The bitter irony of this tragic and inhumane state of affairs is that in the long-term, it's going to be more costly than just providing necessary health care in the first place.
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