There is perhaps no greater stakeholder in the conversation about health care in the United States than the disability community. And with uncertain policy changes ahead, many disabled people are worried. They’re also trying to take action while they can to protect themselves from threats to their lives and well-being.
That’s one reason why some disabled people are pushing Congress to pass the Disability Integration Act (DIA), a law that would codify the right to community-based services for disabled people and provide a clear mechanism for enforcement to keep them out of institutions. If they succeed, the law could be a powerful tool for civil rights in the coming years—but it likely has a slim chance of passing, considering the incoming administration and Congress.
Many nondisabled people are not familiar with the fight for deinstitutionalization and the push for community-based living. Well through the 1970s, nondisabled people broadly viewed institutions as the most appropriate place for disabled people in need of long-term support services, whether they needed mental health care or medical treatment for physical impairments. In theory, they offered secure and safe housing along with trained personnel to help people with activities of daily living (like bathing and dressing) as well as sometimes complex health-care needs, which might include feeding tubes, dressing changes, and other types of skilled nursing care. In practice, however, institutions often had an isolating effect, locking disabled people out of society and exposing them to the risk of physical and sexual abuse from indifferent or hostile caregivers.
The resurgence of the disability rights movement in the 1980s pushed for a shift in the way nondisabled society viewed institutions, building up support for deinstitutionalization that culminated in the Americans with Disabilities Act (ADA) of 1990. The law strongly encouraged giving disabled people the tools to live in their own communities, including robust anti-discrimination protections.
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In contrast to institutions, the provision of home and community-based services (HCBS) can allow people to live independently or semi-independently out in the world as equal citizens. Such services include aides and personal assistants, who may live with their clients or rotate shifts to ensure that individuals have 24/7 help with medical needs and tasks like attending events, going to school, and engaging with the community. In addition to being provided at home to people living independently or with family, another option for HCBS is small group living with other disabled people. Group home settings are still firmly rooted in often residential neighborhoods in towns and cities, rather than being maintained as separate and sometimes hard-to-access specialized facilities—it’s a house with a bunch of disabled roommates down the street, not the place you visit Aunt Liza in twice a year. This ensures that their residents get out and about rather than being trapped inside grim institutional settings.
Perhaps counterintuitively, research indicates HCBS programs are less expensive to administer and provide than institutionalization; it is cheaper per person in most cases to care for people at home. These programs can necessitate more complex organizational costs, as they require more coordination, but that cost is balanced out by the savings on providing services. Despite this fact, many disabled people have trouble accessing them. Both government benefits programs and private insurance have spending caps that are easy to exceed, along with service limits, like arbitrarily assigned hours limits on aides—so, for example, someone who needs 24/7 care might get 12 hours of daily care funded by her benefits program. An agency responsible for funding determinations may also make an incorrect determination about the level of care needed.
Considering those existing difficulties, paired with how the provision of health care and support services will change under the Trump administration, advocates—including disability rights group ADAPT, the United Spinal Association, the National Council on Independent Living, the National Disability Leadership Alliance, and many others—are trying to rekindle interest in the DIA. The exact nature of the changes under Trump aren’t clear, but could include reductions in funding to programs like Medicaid, which would hit disabled people extremely hard. Many rely on Medicaid and Medicare for services because they cannot afford to purchase health insurance or directly pay for services independently. Medicaid expansion through the Affordable Care Act shifted more disabled people to Medicaid, but also put more people in danger of spending cuts. If a clear mandate for community-based living is not enshrined in the law, it’s possible those people will be forced into institutions.
This is something Kayla Whaley, a children’s author with spinal muscular atrophy who uses a wheelchair for mobility and needs assistance with many activities of daily living, is very worried about. “I currently live at home with my parents,” she told Rewire via Twitter direct message. “They’ve been my primary caregivers for the large majority of my life. As they age, though, they’re beginning to have health problems of their own, and I can only assume that trend will continue. Should Medicaid (an imperfect program to be sure, but my only hope for even partial coverage of in-home care) be gutted the way many Republicans want, I fear I won’t have any avenue for independent living when my parents can no longer care for me. In that case, my only option would be institutionalization, where neglect is common and abuse has historically been (and often continues to be) rampant.
“It’s a terrifying prospect that seems more and more likely with every new round of proposed legislation designed to cut supports for disabled folks,” said Whaley.
Though the ADA made HCBS a “priority,” it didn’t provide a mandate for state and federal agencies—just anti-discrimination language that made it clear people should ideally live in their communities. The lack of a firm directive allows many states to duck around what some disabled people see as a civil rights mandate: For those who would prefer to live in institutions, they should remain an option, but for those who do not, living in the community shouldn’t have to be a fight with state agencies for funding and support. In 1999, a U.S. Supreme Court case, Olmstead v L.C., reinforced the right to access community-based services. The justices found that forcing people into institutions against their will could be considered discrimination under the ADA’s stated preference for community-based living when possible. If someone’s needs can be accommodated in the community, they wish to leave institutions, and their care providers indicate that it’s suitable, disabled people must be housed in their communities, according to Olmstead.
In 2010, the subject was addressed again in the Affordable Care Act with the Community First Choice plan option, which offered additional funding to states interested in expanding supports to Medicaid beneficiaries. Such a funding change provided more money for states that opted in, to distribute to disabled residents who need help paying for aides, nurses, and other community-based services. Only a handful of states took advantage of the increased federal funding, highlighting the fact that deinstitutionalization still remains off the radar in many state governments. This is somewhat surprising for budget-conscious states, given the research on the cost of offering such services.
Three years later, the U.S. Senate’s Health, Education, Labor, and Pensions Committee found that the United States was not living up to the expectation that disabled people should be allowed to live in their communities, instead of languishing in institutions. The committee argued, as in Olmstead, that forcing people into institutions via policy is a form of discrimination.
This is where the DIA comes in. Initially introduced by Sen. Chuck Schumer (D-NY) in the previous congressional session, it would require states and insurance providers offering long-term support services to provide access to community-based living first, and to regularly make institutionalized people aware of their options. The bill bans the use of waiting lists, caps, and other barriers used to force people into institutions, and stipulates that governing structures would need to expand access to affordable and accessible housing to ensure that sufficient accommodation would be available to meet the needs of the disabled population.
This is a radical bill because it establishes a flat, clear mandate. Disabled people, the DIA argues, belong in their communities, and we should be concentrating resources to ensure that people can access the level of support they need to thrive. Like the ADA, the DIA could be enforced through lawsuits, whether from the U.S. attorney general (though should Sen. Jeff Sessions (R-AL) be confirmed, he might not pursue civil rights as aggressively as the Obama-era Department of Justice did) or individuals. But the clarity of direction under the DIA makes it much easier to pursue suits—there’s no longer as much ambiguity about whether entities are behaving in a discriminatory fashion.
While references to independent living made it into the Democratic Party platform in 2016, this isn’t entirely a Democratic bill. Rep. Christopher Gibson, who introduced the House version of the bill last session, is also from New York and a Republican. An additional House Republican, Rep. Jim Sensenbrenner (WI), has supported the bill, as has Sen. Bernie Sanders, an Independent who typically caucuses with the Democrats. It will need more robust bipartisan sponsorship to succeed, given the makeup of the incoming Congress, but notably, Republicans have been open to discussions about disability rights in the past—the ADA, after all, was signed into law by President George H. W. Bush. The only way for the DIA to forge a path ahead in the upcoming legislative sessions is for much more aggressive bipartisan outreach and cooperation, as Democrats cannot pass the bill without help, let alone succeed in an attempted veto override if it comes to that.
Before Congress adjourned, the Disability Integration Act spent its time languishing away in committee as advocacy groups lobbied lawmakers to sign on as co-sponsors. A new Congress will be convening on January 3, forcing the whole process to start over again. With a Republican majority in Congress and a less disability-friendly administration in the White House, it could very difficult to enact—particularly since the president-elect has indicated opposition to the DIA. Republicans are riding high on a perceived mandate from the public that includes decentralizing the provision of services and reducing government oversight, and a bill that appears to go against that legislative priority isn’t going to be popular.
It would, however, also be worth it. As of 2009, more than one million disabled people across the United States needed support services, whether delivered in their own homes, group-based settings, or institutions. With an aging population, the number of people who need long-term support services is only going to increase, and the nation should be ready.