“I’d rather go to jail than die in a nursing home!”
These were the words chanted by disability rights activists gathered in Sen. Cory Gardner’s Washington, DC, office last week as police began making arrests, taking 17 of them to jail. They were released hours later. The activists had a question for Gardner and his staff: Why is the Colorado Republican the only member of Congress from his state who has yet to co-sponsor the Disability Integration Act?
Advocates say the bipartisan bill is crucial for ensuring that people living with disabilities are not forced to live in nursing homes and other institutions against their will and can choose to receive supportive services in their own homes instead. The legislation centers on protecting freedom and civil rights and is expected to reduce Medicaid spending, so supporting it should be a political no-brainer.
“Nobody grows up thinking they want to live in a nursing facility,” said Gregg Beratan, the government affairs manager at the Center for Disability Rights, in an interview.
Beratan is also a member of ADAPT, the longstanding grassroots group that engages in nonviolent direct action to fight for disability rights. ADAPT activists spent much of last week confronting key lawmakers who have not co-sponsored the Disabilities Integration Act and bringing others on board. In Gardner’s office, the activists waited for hours to meet with staff and discuss the bill, but staffers apparently contacted the police instead.
I’d rather go to jail than die in a nursing home https://t.co/dlr7JaZZ8b
— NationalADAPT (@NationalADAPT) September 20, 2018
Gardner had not added his name to the list of the bill’s co-sponsors by the time this article was published, and his office has not responded to an inquiry from Truthout.
Nursing homes are often associated with the elderly, but it is typically an illness or disability, not age, that qualifies someone for a nursing home. Life in a nursing home can be isolating, and Beratan said people with disabilities have experienced abuse in nursing facilities. One of his friends was forced into a nursing home when he was 15 years old and did not get out until he was 21. Another friend has his wheelchair and communication device taken away when he doesn’t behave according to the demands of the facility’s staff.
“If you were charged with a crime, you would probably get more due process then if you were put into a nursing facility, whether you choose to be there or not,” Beratan said.
Most private insurance programs are not set up to provide adequate, long-term services to disabled people, so most rely on Medicaid. Activists have spent years organizing, gathering resources and building infrastructure within the Medicaid program to give people living with disabilities that require long-term support services the choice to receive supportive care in their own homes, rather than being institutionalized against their will, which can still happen in states that have not expanded home and community-based services.
Still, Beratan said people with disabilities continue to face an “institutional bias” within the Medicaid program and other health plans that assumes nursing home care is required for providing services to people with certain disabilities. When state lawmakers attempt to trim Medicaid spending, home-based services are often put on the chopping block, even though they are less expensive than housing people in nursing homes.
“Home and community-based services are more cost-effective and are provided where people want to be,” Beratan said. “People are forced into nursing facilitates to get the services they need to live, and this is taking away people’s ability to work, and people’s ability to stay with their families.”
Disability rights activists won a crucial victory in 1999 when the Supreme Court ruled that unnecessary segregation of people with disabilities deprived them of their right as citizens to participate in civic life, a violation of the landmark Americans with Disabilities Act. Activists are still pushing to implement the ruling years later, and they say the Disability Integration Act is needed to enshrine their civil rights into federal law.
The bill would clarify that everyone who is eligible for long-term supportive services has a federally protected right to make real choices about how they receive support services. It also aims to give disabled individuals maximum control over their services and supports, and ensure that they live the most independent and integrated life possible. Beratan said states would be given considerable flexibility in meeting these standards — and they could save money in the process.
Dozens of studies have shown that providing services to people with disabilities outside of nursing homes is less expensive than institutionalizing them, according to a 2013 report issued by the Senate Health, Education, Labor and Pensions (HELP) Committee. Between 1995 and 2010, states reduced the share of Medicaid spending on nursing homes, psychiatric hospitals and institutions for people with intellectual and developmental disabilities from 79 percent to 50 percent.
However, progress on what’s known as “deinstitutionalization” has varied between the states, which are generally allowed to run their own Medicaid programs. By 2010, only 12 states were spending more than half of their Medicaid dollars on long-term supportive services at home and community-based providers for people with disabilities, according to the report. From 2008 to 2012, the number of people with disabilities under the age of 65 and living in nursing homes actually increased.
This disparity was visible back in 1991, when activist Latonya Reeves became one of the first people to leave an expensive nursing home in Tennessee and move to Colorado, where long-term home-based support services were available and she could live in her own home. Reeves made the journey with help from fellow activists, and soon came back to help others leave on what’s known as the “disability underground railroad.” Reeves currently lives and works in Denver.
“I would be dead if I would have stayed in Tennessee,” Reeves said in a recent statement aimed at Sen. Lamar Alexander, a Tennessee Republican who is under pressure from ADAPT activists to add his name to the list of Disability Integration Act co-sponsors.
While the disability underground railroad helped people like Reeves lead free lives, those who fled states like Tennessee for states with better services were forced to leave their homes, friends and family in the process.
“When people like Latonya are forced to move thousands of miles from their families and friends just to get out of an institution something is terribly wrong,” said ADAPT organizer Anita Cameron in a statement.
“Everyone should have the choice to live in the community where we can work, raise our families, attend our churches and live our lives. The government shouldn’t be choosing for us, and it — most certainly — should not be locking us away.”
ADAPT activist Dawn Russell lived with Reeves in the same institution in Tennessee as children, and now she lives in Colorado as well, where she has relied on attendant care provided by Medicaid since her life partner and caretaker David passed away in 2015.
“I am not the only refugee who has found home in Colorado, a lot of us with disabilities have come here,” Russell said in an interview.
Russell said Alexander was already well into his political career when Reeves was forced to leave Tennessee for a better life in another state, but activists are still asking for his support. Last week ADAPT activists gathered at his office in hopes that stories from the disabilities underground railroad would inspire him to co-sponsor the Disabilities Integration Act.
For Beratan the Disabilities Integration Act is not a partisan issue; in fact, it’s something liberals and fiscal conservatives can agree on. Many of the bill’s current co-sponsors are Democrats, but it has also received support from Rep. Ken Buck of Colorado, a Republican with an extremely conservative voting record. In fact, New York Gov. Andrew Cuomo, a high-profile Democrat, signed a state budget this year that could incentivize private Medicaid providers to place disabled people in nursing homes, despite protests from disabilities advocates.
“We are getting hit by both sides,” said Beratan, who is based in New York. “We are getting hit by Republicans in Congress and Democrats back home.”
Sen. Alexander chairs the Senate HELP committee where the Disabilities Integration Act has been introduced, so activists see his support as crucial for advancing the bill. Of course, many of the people who rode the disabilities underground railroad hail from his state and others like it. When talks with staff at Alexander’s office failed to secure support for the bill last week, ADAPT activists went looking for the senator at his Washington, DC, apartment. Alexander was able to avoid them. His office did not respond to several requests for comment from Truthout.