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Congress Considers Bill to Defend Freedom of People With Disabilities

Many with disabilities are forced into institutions instead of receiving essential services at home.

Protesters from ADAPT, a grassroots community that organizes disability rights activists to engage in nonviolent direct action, block the sidewalk along the north side of the White House, September 20, 2010, in Washington, DC.

On January 15, disability justice activists celebrated the reintroduction of the Disability Integration Act (DIA). This monumental piece of legislation is an important step forward for the full civil rights of those with disabilities.

The DIA would ensure that people with disabilities have the right to live in their homes and receive services to do so. Insurance companies and state governments would be barred from discriminating against people with disabilities through imposing what is essentially segregation. Far too many of those with disabilities are forced into nursing homes and other institutions rather than given in-home supports they need, which are often less expensive than institutionalization.

Once they are in nursing homes, people almost entirely lose their freedom: the freedom to choose not only where they live, but what they eat, who they spend time with, if and when they go out and return home, and more. They’re also at a higher risk of abuse by the staff.

Many people live in nursing homes simply because there isn’t any accessible and affordable housing available to them. Access to housing is one of many barriers people with disabilities face. Under the DIA, the failure of a public entity to ensure “affordable, accessible, and integrated housing” to allow people with disabilities that require Long Term Services and Support, such as home health aides and attendants, to live in the community would be considered “discrimination.” There is also a provision that addresses how some forms of long-term support are only given based on tenancy in certain types of housing such as public housing.

Even for those who are receiving services that allow them to live at home, there are still limitations placed on their freedom. Many programs require that individuals only receive help while they’re at home. Clients typically cannot choose the schedule on which their services are provided. These restrictions can diminish access to employment, education and community activities. Help with daily tasks, such as shopping, cooking for both the client and their dependents, or travel to medical appointments may not be available. Service providers can also refuse to help with tasks in the home. The DIA would address each of these issues.

The DIA has received bipartisan support in both the House and Senate, and was reintroduced by Sen. Charles Schumer (D-New York) and Rep. James Sensenbrenner (R-Wisconsin). Sen. Cory Gardner (R-Colorado) also supports the DIA now despite his past unwillingness to do so. In September 2018 Gardner had 17 disability justice activists arrested while they were at his office demanding answers as to why he wouldn’t co-sponsor the bill.

Anita Cameron, director of minority outreach for Not Dead Yet — a grassroots organization that opposes the assisted suicide and euthanasia of people with disabilities — told Truthout she is calling on Congress to pass the DIA on July 26, 2019, the anniversary of the Americans with Disabilities Act (ADA). The DIA is important “civil rights legislation,” Cameron argued, because those who are institutionalized are disproportionately people of color — in particular Black women. When asked about the rates of institutionalization and access to long-term services and support for Indigenous people, Cameron responded that there isn’t any data available, but that the national disability rights group, ADAPT, is working with more Indigenous people in the hopes of solving these gaps in data and access to care.

Dara Baldwin, director of national policy at the Center for Disability Rights, told Truthout she feels hopeful about passing the DIA this congressional session, but there is work to be done. There are 435 representatives and 100 senators to educate not only on the DIA, but on disability justice issues in general. A lack of institutional knowledge is a barrier to the bill’s passage.

Baldwin says most Congress members know very little about disability-related legislation. The 115th Congress only had 22 representatives and 13 senators who were in office when the ADA was passed. “They don’t know the ADA and they surely don’t understand the DIA and institutionalization,” Baldwin explained. While the 116th Congress is more supportive, a new Congress brings the challenge of building relationships and educating them on the DIA. There are currently a total of 49 senators and representatives supporting the DIA.

Party politics and “political leverage” will also have an impact on the DIA’s future. In the 115th Congress, the ADA Education and Reform Act (HR 620) passed the House with 12 Democrats voting “yes” and 20 cosponsoring it. This bill limited the rights of people with disabilities to legally challenge architectural barriers that prevent them from accessing a business. After passing such an egregious, regressive bill, “the Democrats owe us,” Baldwin said.

The DIA didn’t pass in the past partially, Baldwin said, because so much of the advocacy work done in 2017 was focused on saving the Affordable Care Act (ACA). However, she said that the work on the ACA has created openings for conversations on the DIA with both legislators and nonprofit organizations, such as the Human Rights Campaign and AARP, both of which now support the DIA.

The 116th Congress has brought hope to many communities to see their rights safeguarded, and the disability community has many reasons to hope for new guarantees to protect the right to dignity and autonomy. In the days and weeks ahead, disability justice activists will be pushing lawmakers to pass these protections.

NOTE: Dara Baldwin was previously wrongly identified as a senior policy analyst for the National Disability Rights Network. Baldwin is the director of national policy at the Center for Disability Rights.

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