“A good 75 percent of us were arrested on the first day,” says disability rights activist Danny Saenz, laughing as he recalls a direct action he was part of in the early 1990s, soon after the passage of the Americans with Disabilities Act (ADA).
Saenz and other activists with disabilities had traveled to Orlando, Florida, for the annual convention of the American Health Care Association, the most powerful nursing home lobbying group in the country.
“We went to their hotel and we took it over, and the whole bunch of us were rounded up and we spent three days in jail,” he told Truthout.
Creating more accessible communities doesn’t go far enough unless people with disabilities are free to live in those communities.
Saenz has been a member of the disability rights group ADAPT for over 25 years, and that day in Florida was just one of many times he’s been arrested while protesting for civil rights, often after having chained his wheelchair to other activists.
In our interview, Saenz — from Austin, Texas — is genial and soft-spoken, but he says that at protests, he and his allies are anything but quiet. “Our chant as we were fixing to get arrested was ‘We’d rather go to jail than die in a nursing home,'” he said.
More than two decades after that protest, hundreds of thousands of people with disabilities are still in nursing homes, where their movement may be highly restricted, even when they could be living more independent lives with the right support from their communities.
After ADA: The Disability Integration Act
ADAPT was instrumental in pressuring the government to pass the ADA. The group’s bus blockades (featuring more arrests for Saenz) helped force public transit to become accessible nationwide. But creating more accessible communities doesn’t go far enough unless people with disabilities are free to live in those communities.
The ADA mandates that people receive support services and encourages states to help people with disabilities live in their communities, but it doesn’t create a clear path to independence. The Disability Integration Act (DIA), introduced as S. 2427 in December 2015 by Sen. Chuck Schumer (D-New York), could change that by forcing states to prioritize accessible housing and community-based services instead of nursing homes.
“It establishes a right to long-term services and support for those of us that qualify for them,” said Jennifer McPhail, an Austin-based community organizer with ADAPT. “Right now, you don’t have a guarantee that it will be there when you need it.”
People with disabilities, particularly those on Medicaid, are largely at the whim of their local governments, meaning someone with the funding to live in the community one year might be forced back into an institution during the next cycle.
“What we’re trying to do is level the playing field and give a person a right to community-based services,” McPhail said. Under the DIA, she explained, people would be free to choose between home-based services and institutions.
ADAPT’s research shows that “overwhelmingly people would choose community” over living in an institution. A Harris poll conducted in 2010, based around a previous version of the bill, showed that 84 percent of Americans support legislation that mandates community services. That number rose to 94 percent when polling retirees and baby boomers.
The DIA would force states to prioritize community-based services over nursing homes, but leaves it up to individual state governments to determine the best way to implement that mandate. Much like the ADA, it creates a path to enforcement as well, by allowing individuals and attorneys general to sue over discrimination, as defined by the bill.
The DIA could have far-reaching effects, according to a New York Times analysis published on May 13:
More than 1.4 million Americans live in nursing homes, but it is hard to know how many of them could move back home. Federal data suggests that about 155,000 nursing home residents have a low need for round-the-clock assistance. And about 217,000 people are of working age, another group that experts say could function well at home. But long-term care experts said that some residents who are sicker might also be good candidates to leave.
Although the Disability Integration Act is a long way from being enacted, a coalition of groups, including ADAPT, is lobbying for support on both the state and national levels and starting to win victories.
On March 31, the Austin City Council became the first city government in the United States to pass a resolution endorsing the bill. The Democratic Party in Travis County (where Austin is located) and the El Paso County Democratic Party have also voiced their support for the bill.
Ann Kitchen, an Austin City Council member, said that the need for the DIA is growing:
It’s particularly important right now, as the baby boom group ages. Some have called it a “silver tsunami.” We need to be prepared; all of our support services and medical programs need to be prepared to work better. Emphasizing services in the community is so much more effective.
McPhail agreed that the aging population creates a greater need than ever to pass the bill. “Who’s looking forward to the day that someone makes all your decisions for you, after you were a part of society?”
However, over the past decade, the number of younger people entering nursing homes has also risen sharply.
“You Have to Keep Pushing Them”
Texas is one of six states to implement the Community First Choice program under Medicaid, which creates incentives for offering community-based services. But even under this system, Saenz and other Texans with disabilities who are on Medicaid are only able to provide poverty-level wages to their personal attendants, who assist them with essential everyday tasks like dressing and bathing. States receive federal funding to pay for Medicaid, but it’s left up to the legislatures to divide those funds between nursing homes and community services. Saenz’s attendants are his employees, but others operate through agencies.
Saenz said he’s constantly worried about losing his attendants to illness or retirement. Both his regular caregivers are in their 60s. “That’s something I always have in the back of my head; what am I going to do if something happens?”
Wages for attendants vary a great deal from state to state, but ADAPT research from 2015 suggested the average attendant in Texas earned about $8.51 per hour, lower even than other conservative states like Arizona, where the average wage is $10 per hour. After intense lobbying and protests, including a May 19, 2015, occupation of the governor’s office, the Texas Legislature grudgingly agreed to raise the base pay for Medicaid-based attendants from $7.25 to $8 per hour.
With attendants earning wages lower than some fast-food jobs, people with disabilities constantly struggle to find and keep attendants, even when the funds are available. Saenz has friends who have been forced into institutions because they couldn’t find sufficient attendants, and another needed surgery because of injuries sustained from sleeping three to four nights a week in his wheelchair because he didn’t have anyone to help him get into bed.
As the Fight for $15 campaign spreads across the United States, it’s clear that personal care attendants are an often-overlooked segment of the workforce. It’s not just a labor issue, but also one of gender equality and racial justice. A 2010 study by the Paraprofessional Healthcare Institute found that about 52 percent of attendants are people of color, and research by AARP suggests over 90 percent of the workforce, both in and out of institutions, are women.
Cathy Cranston, an Austin-based organizer with Personal Attendant Coalition of Texas, said the DIA would “create a payment structure that would ensure a sufficient workforce.” Under the law, failure to provide enough funding to pay attendants a competitive wage would be considered a form of discrimination against people with disabilities.
“Right now, the wages are so low — we’re talking about in Texas but also across the nation — [people with disabilities] can’t find the attendants,” she added.
Cranston has worked as a personal attendant for about 35 years. She was drawn into the field as a student by a program, long since slashed from the state’s budget, which provided room and board, along with a modest monthly stipend, for personal care workers. “It helped pay my way through college,” she told Truthout.
Under the DIA, “My life would get a little easier,” she said. “I don’t get vacation time; I don’t get sick leave, but at least it would help pay for my health care.”
As an experienced worker, Cranston has a position that pays $9.56 per hour. Many other attendants she knows are single parents, and some depend on social services to survive. “This would make their lives a heck of a lot easier,” she said. “They could buy their kids shoes and go to the dentist.”
With the current Congress notoriously resistant to progressive causes, ADAPT is left looking to the next election, hoping for a change in the political landscape that could allow the DIA to pass. Regardless, the Texas-based attendants plan to demand $13 per hour at the next biennial legislative session in 2017.
“You have to keep pushing them, that’s the only way,” Cranston said.
Saenz, meanwhile, finds inspiration from the disability rights movement’s accomplishments.
“Even though I get discouraged from time to time with how much we have to struggle and fight and protest and get arrested, we’ve still come a long way,” he said. “We’ve got to remember that.”