Disability Activists Fight for the Right to Live in Their Communities

As support for the Disability Integration Act grows across party lines, activists are hopeful about its future.

[Photo: People participate in the first annual Disability Pride Parade]
This week, members of ADAPT, a national grassroots group of disability rights activists, descended upon Washington, D.C., to garner support for the Disability Integration Act (DIA). Stephanie Keith/Getty Images

Living in the community is something most nondisabled people take for granted. But for people with disabilities, it’s no guarantee—it’s something advocates have spent decades fighting for.

This week, members of ADAPT, a national grassroots group of disability rights activists, descended upon Washington, D.C., to garner support for the Disability Integration Act (DIA). If passed, the DIA would ensure that people with disabilities have a right to live in their communities and receive the appropriate services that enable them to do so. As support for the DIA grows across party lines, activists are hopeful about its future.

Beginning in the 19th century, people with disabilities who needed any type of services or supports were typically forced out of necessity to live in institutions, generally large state-run hospitals or training schools. Through most of the 20th century, the number of people with disabilities—primarily psychiatric or intellectual—who were warehoused in institutions grew substantially. At their peaks, there were nearly 560,000 people with psychiatric disabilities and 195,000 people with intellectual disabilities living in state institutions.

But as the appalling conditions of these institutions began to be exposed, advocates pushed for the government to provide home- and community-based services and supports. Initially, the deinstitutionalization movement focused on people with psychiatric disabilities in the 1950s. A decade later, similar efforts were underway for people with intellectual disabilities, eventually resulting in the passage of the Americans with Disabilities (ADA) in 1990 following significant organizing by disability activists. Modeled after the Civil Rights Act, the ADA prohibits public and private entities from discriminating against people with disabilities. It also requires employers to make reasonable accommodations for workers with disabilities.

Although the ADA established that people with disabilities should enjoy “equality of opportunity, full participation, independent living, and economic self-sufficiency,” the landmark legislation did little to expand opportunities for people with disabilities to live in the community with the appropriate supports. That was, until the 1999 case, Olmstead v. L.C., in which the U.S. Supreme Court held that under the ADA, people with disabilities have the right to live in the community rather than institutions. Specifically, the Court ruled that states must provide home- and community-based services to people with disabilities whenever possible, taking into account the preferences of the individual and the availability of resources.

Home- and community-based services are individualized supports delivered to people in the community. They cover a range of services, such as home health care, durable medical equipment, therapy, and case management.

In 2010, the federal government sought to expand home- and community-based services through the Community First Choice provision of the Affordable Care Act. Through this program, states can receive additional funds if they offer home- and community-based services, such as personal care assistance, to Medicaid beneficiaries. Unfortunately, only eight states—California, Connecticut, Maryland, Montana, New York, Oregon, Texas, and Washington—are offering home- and community-based services through this program as of 2016, once again signaling that deinstitutionalization is not a priority for the majority of states.

In fact, a 2013 report by the U.S. Senate Health, Education, Labor, and Pensions Committee, “Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act,” found that states were continuing to not provide the necessary home- and community-based services to ensure that people with disabilities were able to live in the community. Accordingly, the committee recommended that Congress amend the ADA to strengthen the law’s integration mandate, and require states to provide people with disabilities actual choice as to where they live and the services they receive.

In response, the DIA was first introduced in the 114th Congress (2015-2016) and reintroduced in the 115th Congress (2017-2018) by Sen. Chuck Schumer (D-NY) and Rep. Jim Sensenbrenner (R-WI). This bicameral, bipartisan legislation aims to address the fundamental issue: that people who need long-term services and supports are forced to live in institutions and are losing their civil rights.

Providing services that allow people to live in the community is not only the right thing to do, it is the most cost-effective. For example, in 2015, the median yearly cost for nursing home care was $91,250, compared to $45,760 for home health aide services. Put simply, providing people with services in the community makes the most sense.

Nonetheless, there remains a bias within the Medicaid program: The federal government requires states to pay for institutional care only. “States are required to cover nursing facility benefits, while coverage of most [home and community-based services] is optional,” according to the Kaiser Family Foundation.

The DIA offers a comprehensive solution, ensuring that people who are eligible for long-term services and supports would have the right to live in their community and receive these services, rather than live in institutions. In other words, people with disabilities and seniors would have a legal right to decide how they receive services and supports as well as where they are provided (i.e., in the community or institutional setting). Further, the DIA would require states to increase affordable and accessible housing for people with disabilities and seniors.

On Monday, members of ADAPT went to the nation’s capital to garner support for the DIA, which has still not been heard in committee. With that in mind, the activists began their efforts on Capitol Hill, where they demanded that both U.S. Senate Health, Education, Labor, and Pensions Committee Chairman Sen. Lamar Alexander (R-TN) and the Ranking Member Sen. Patty Murray (D-WA) support the legislation. “Senator Patty Murray engaged the group and, after discussion with the ADAPT members in her office, she agreed to sign on,” according to a press release from ADAPT.

Meanwhile, ADAPT reported that 51 of its members were arrested in Sen. Alexander’s office.

Colleen Flanagan, a member of ADAPT and founder of Disability Action, explained to Rewire.News via email, “ADAPTers visited Senator Lamar Alexander’s office to ask him to co-sponsor the Disability Integration Act. Because the Senator is the Chair of the Senate HELP Committee, he has the power to stop the institutional bias that is forcing disabled Americans into nursing homes.”

“Once it was clear that Sen. Alexander was not interested in responding to us, we put on the brakes of our wheelchairs and started to shout: ‘Cut the bullshit, cut the crap, now it’s time to face ADAPT.’ We were loud. We chanted until U.S. Capitol Police arrested us for ‘incommoding.’ Shame on Sen. Alexander for ignoring people with disabilities’ pursuit for life and liberty,” Flanagan continued.

But the activists didn’t stop there. Instead, they sought to expand the growing list of supporters by targeting the Center for American Progress (CAP) and the Heritage Foundation the next day, two policy think tanks on opposite ends of the political spectrum. After ADAPT protested outside the organizations and met with leaders from each, both agreed to support the DIA.

“Disturbingly, nearly three decades after the Americans with Disabilities Act was signed into law, too many Americans with disabilities are still fighting for the right to live independently, rather than in isolating institutions,” the Center for American Progress said in a statement. “This must end. CAP commends ADAPT for its leadership in raising awareness about this injustice and is proud to support the Disability Integration Act.”

Heritage Foundation President Kay Coles James also issued a statement after meeting with members of ADAPT: “Like ADAPT, we believe all Americans—regardless of disability—should be free to live independent lives, age in place, and realize the gifts of Life, Liberty, and the Pursuit of Happiness.”

“I look forward to meeting again soon with ADAPT and other advocates as we explore common-sense reforms that will replace government-dictated with consumer-driven healthcare,” the statement continued. “There is never a need to block Heritage’s doors. They’re always open, and a meeting is just a call away!”

Following its successes at the Center for American Progress and the Heritage Foundation, ADAPT went to AARP (formerly the American Association of Retired Persons) to urge it to support the DIA. Anita Cameron, a member of ADAPT,  said in a statement, “As a member of AARP, I expect advocacy on policies that help me continue to live at home even as I am getting older. I have no intention of moving out of the home and community I love; I just need the support to live my life. AARP should be there for me, and they aren’t.”

Rather than meet with members of ADAPT, AARP called the police to disperse the protesters, NOS Magazine reported. Members of ADAPT agreed to leave once a meeting with AARP’s leadership was scheduled. No members of ADAPT were arrested.

Following a meeting the next day, AARP “agreed to support the DIA once both parties agreed on some changes in language [to the bill],” Marilee Adamski-Smith, ADAPT’s national media chair, told Rewire.News in an email.

In the end, ADAPT believes it got what it was looking for: increased support for the DIA. Over 400 national and state disability and civil rights organizations support the legislation.

“Conservative, progressive, bipartisan, nonpartisan, whatever…. We can all agree that DIA needs to happen,” said Josue Rodriguez, an organizer with El Paso ADAPT, in a press release from the national organization.