Next Steps: 25 Years After the Passage of the ADA, The Work of Disability Rights Activists Continues

Next Steps

25 years after the passage of the ADA, the work of disability rights activists continues

Story by eric seeger

As the Americans with Disabilities Act (ADA) turns 25, the people who fought for it – as well as an entire new generation of leaders – are very busy.

This moment in history is particularly poignant for the disability rights movement, because many of the advocates today represent much of the timeline of activism. Protesters who remember the Rehabilitation Act in the 1970s are working alongside the framers of the Americans with Disabilities Act. And 40-somethings who were in high school when the ADA went into effect are seeing the first generation of people with disabilities who have always lived with this law reach adulthood.

“It’s an exciting time,” said Mark Johnson of The ADA Legacy Project, about the cultural shift in advocacy today. “[Young adults] have grown up with this atmosphere all their lives. They don’t have to fight for equality; they just expect it. That’s where the next generation is taking us.”

Helping the Memory Live On

With the anniversary of this landmark legislation comes the opportunity to look inward at the movement, to review its history, and to set goals for the future.

As Johnson points out, an entire generation of adults has grown up knowing nothing but life under the ADA. They likely live more inclusively than others before them. But they might not know the real-life struggles that people with disabilities faced before the law came to their side. More important, they may not see how it supports everyday aspects of their lives – or how it still stands to be improved. Since 2012, The ADA Legacy Project has been raising awareness of this anniversary by coordinating events and creating educational materials on the disability rights movement; the resounding message: “Disability Rights are Civil Rights.”

“Fifty years after the Civil Rights Act, we are not done,” said Johnson. “Twenty-five years after the ADA, we are not done either.”

Starting in 2014, The ADA Legacy Project launched the ADA Legacy Tour, which includes a 37-foot RV wrapped in disability rights images, portal exhibits, and related materials.

“This anniversary can bring attention to the past and remaining issues,” Johnson said. “If you’re a person with disability, I hope that you will come away with a sense of pride. If you don’t have a disability, I hope that you will come away not just more aware, but more involved.”

Protest and Civil Action

A quarter-century after the ADA’s signing, there remains a valid need for public protest on behalf of people with disabilities. For more than 30 years, ADAPT has been organizing activists and leading nonviolent protests – including civil disobedience – across the country to raise awareness.

In September 2014, hundreds of ADAPT protesters came to Little Rock, Arkansas, for four days of protest. Dozens of activists were arrested during the week for confronting individuals and groups that support the institutional bias. According to the group’s action report:

State funding for long term services and support for seniors and people with physical disabilities is institutionally biased, with 69.7% of Medicaid funding going to nursing facilities. “That’s pathetic,” said Mike Oxford, an ADAPT Organizer from Kansas. “Seniors and people with disabilities don’t want to be forced into nursing facilities, but that’s what the state is doing.” ADAPT came to the state capital to show Arkansas’ citizens that they were paying a hefty sum for services that members of the disability community didn’t even want – that nursing homes had a grip on funding even though Medicaid’s Community First Choice Option (CFCO) is supposed to allow for people to choose where and how they live.

Members of the disability rights organization ADAPT talk with a member of the U.S. Park Police, center, in 2010 after they handcuffed themselves to the fence in front of the White House in Washington, D.C. The nonviolent direct action served to draw attention to the need for communitybased long-term care services for people with disabilities and seniors on Medicaid.

AP Photo/ Alex Bandon

“Currently there is a nineyear waiting list for people with disabilities to move out of an institution and into their own community and CFCO can change that,” said Brenda Stinebuck, an ADAPT organizer in Arkansas. “Even though it makes fiscal and moral sense, [CFCO] has been under attack. Frankly, people are playing politics with our lives and our freedom; this has to stop!”

Improving Representation in the Workforce

“When was the last time you read a news article that talked about unemployment rates, and it mentioned the unemployment rates of people with disabilities?” Johnson asked. “Yeah. We still have a long way to go.”

In recent years, there has started a marked push to get more Americans with disabilities into the workforce. But it’s a complicated issue that must be fought on multiple levels far beyond the individual’s need to find a suitable job – and encouraging employers to look beyond the disability to see the person. This problem is the result of failures that include our health and human service system.

Sarah Triano knows the situation all too well. As the executive officer for the California Committee on the Employment of People with Disabilities, she sees the statistics in her state: only 18 percent of residents with disabilities are employed, compared to 67 percent of the general population. California, in fact, has the worst representation of people with disabilities in its workforce of all states in the country.

In 2008, researchers surveyed people with disabilities in California who wanted to work but were not getting jobs. Many uniformly responded that they were told not to work by a health care provider – 97 percent were told by a health care provider that they shouldn’t work. California’s health care providers might have a different perception of their patients’ employment potential if they worked side by side every day with a colleague who has a disability, but people with disabilities represent only 3.7 percent of the health workforce in California.

“So you are seeing right there one of the root causes of disability unemployment in our country,” said Triano. “And sometimes health care providers are correct, and sometimes they are not.” She herself has been denied insurance coverage due to pre-existing conditions. She credits the Affordable Care Act with ending that practice, but admits changing people’s minds about going back to work can be difficult at times – especially when their doctors are discouraging it.

“I went out on short-term disability a few years ago (because of my disabilities) and I was out of work for about three months,” she said. “When I was recovered and ready to go back to work, my doctor encouraged me to go on long-term disability. She had only seen me for three months of my life, and she really didn’t know what I was capable of. And in fact I said to her, ‘No, I really have to get back to work – I am being considered for an appointment by the governor.’ She thought I was hallucinating due to the medications I was on.”

The California Committee aims to remedy the situation by pressing for greater employment of people with disabilities in the health care field. The committee believes that having greater representation in this field could be transformative on both sides of the patient-provider relationship. Medical professionals would start seeing people with disabilities as peers rather than patients. The social impact would be equally profound. “If you have a daughter who uses a wheelchair and you take her to go to see the doctor,” said Triano, “if the doctor rolls into the room in a wheelchair, you’ve completely changed that girl’s views and expectations on what she can do in life.”

Matthew McMeekin gets off a bus at his home in Bethesda, Maryland, on Feb. 10, 2014, as he returns from work. McMeekin, who is developmentally disabled, has been employed for 14 years at Rehabilitation Opportunities Inc., a nonprofit sheltered workshop where he and other workers with disabilities are bused each workday to stuff envelopes, collate files, or shrink-wrap products – all for far less than the state minimum wage.

AP Photo/ Charles Dharapak

The Committee has set goals for California to improve hiring in the health sector as well as other private and public areas. Right now, only 10 percent of state employees have disabilities, but the California State Personnel Board has issued a mandate to raise that number to 16 percent – to align it with the percentage of Californians living with a disability.

Still, the numbers are daunting. To move the employment figures up by .5 percent in a year, the Committee estimates 7,900 people with disabilities would have to enter the California workforce.

“I think that what will ultimately move the needle is Medicaid reform,” she said. “In California, there are 2.8 million workingaged adults with disabilities – 2.2 million are out of the workforce completely. Seventy percent of that 2.2 million have declared to the federal government that they cannot work because of their disabilities and are receiving Social Security disability benefits in order to get the health care they need to survive. Many people with disabilities can work and want to work but choose not to work for fear of losing the longterm services and supports they receive under Medicaid. You shouldn’t have to go on welfare to get health care, but unfortunately that’s the reality for many of us with disabilities in the United States. Medicaid drives state budgets.

“Work is so much a part of who we are as a culture in the U.S.,” said Triano. “When you meet someone, the first thing they ask is, ‘What do you do?’ People with disabilities simply want the equal opportunity to be asked, ‘What do you do?’”

Ending Sheltered Workplaces

While Triano and others want to see greater participation of disabled people in the workforce, one employment practice that almost everyone universally wants to see eliminated is the practice of “sheltered” workplaces. This is a system whereby people with disabilities are legally hired to work for less than minimum wage.

The practice comes from the 1930s, when labor laws were loosened to allow employers to pay workers with disabilities wages commensurate with their productivity. For its time, this was a considerable step out of institutions, where many people with disabilities often were relegated. But Triano summed up the many advocates’ feelings about sheltered work this way: “It is a relic from the past that really needs to go away.”

One person who shares this opinion is Andrew Imparato, the executive director of the Association of University Centers on Disabilities (AUCD). Imparato worked on Sen. Tom Harkin’s staff from 1993-94, in the early years of ADA implementation, and again from 2010-2013. He sees that many of the policies have gone from being transformative (in their day) to holding back people with disabilities now.

“The biggest federal programs to support disabled people were designed in the 1970s and earlier, when we had much lower expectations for what people with disabilities could do,” Imparato said. Today, his organization, which represents and coordinates hundreds of university researchers working in cross-disability study and training, is advocating for reform of how the government spends tax dollars to support people with disabilities. He sees that many people in the disability community are being held in poverty by a system designed to offer minimal financial support. Instead, he and his colleagues would like to see a portion of the current federal financial support being put toward job training and employmentoriented long-term services and supports – essentially spending tax dollars with the intention of seeing return on investment by helping people move further toward supporting themselves.

“The legislative part of it is going to require action, and it starts with the committees of jurisdiction in the House and Senate deciding that they need to do something,” Imparato said. He sees parallels between this situation and President Bill Clinton’s welfare reform work in the 1990s. Rather than simply receiving support checks, welfare recipients were incentivized to receive new job training so that they could improve their situations. “Lots of people on SSI [Supplemental Security Income] and SSDI [Social Security Disability Insurance] don’t like rules of the programs and they don’t like the boxes they have been forced into by anachronistic programs.”

Residential buildings on the grounds of Southside Virginia Training Center in Dinwiddie County, Virginia, are shown boarded up on May 19, 2014. The center is the first of four institutions closing under a settlement between Virginia and the Department of Justice to shift people with intellectual disabilities to communitybased care. Deinstitutionalization of people living with disabilities has been an area of focus for disability advocates.

AP Photo/ The Progress-Index, Amir Vera

Imparato recognizes the political risk involved with pressing policymakers to upend the benefits of people with disabilities. “It would be difficult for a Republican president to do this, because it would be too easy to demagogue him or her.” He sees the idea as an opportunity in a Democratic administration, but understands that even then it’s a loaded proposition. “We would need to have disabled people leading the effort,” essentially, “to show that this is something the community wants – that we’re not under political attack.”

“We [AUCD] have a lot of our folks who work with public policy out there educating people at [the] state or federal level about how current programs work and [sharing] different ideas on what we have to do to fix the problems,” he added. “Congress could promote change in this area by empowering governors and state legislatures to test new, more modern approaches to providing long-term services and supports to people with disabilities that are designed to help them maintain full lives in the community with dignity and choice, decent jobs, and economic well-being.”

Advocacy for Inclusive Living

“How the heck can you be a community when you keep people apart?” Johnson said. “Way back, we would get asked, ‘Why do you want the same access to public transit?’ If I ride the same bus as you, we might realize that we live a few blocks apart. We might even like the same pizza place. Keep us apart, and we might never have a conversation.”

Gaining access to public transit systems was a first step. But advocates point out that the disabled rights movement mirrors the civil rights movement African- Americans undertook in the 1960s. First came equal access, next came affirmative action to level the playing field. For many people with disabilities, that even level means being accepted into schools, the workplace, and living in the real world.

The AUCD began in the 1960s, under mandate (and a different name) from the Developmental Disabilities Act with the intent of helping more people move out of institutions and become members of their communities.

“In the early years, our mission was to take the best and the brightest from the universities and have them work to help get people with developmental and intellectual disabilities out of institutions – and build communitybased housing and programming for a population that was heavily institutionalized and forgotten about,” said Imparato. “Over time, the focus has gone from getting people out of these situations to promoting quality mainstream education; competitive, integrated employment; and a full life in the community for everyone. It’s a wide range of issues, and the population we’re working with has gotten broader, too.”

Today the AUCD works with researchers at more than 100 universities who specialize in developing new ways to partner with and empower people with a wide range of mental, physical, and sensory disabilities and their families so that they have the same kinds of choices and opportunities that so many Americans take for granted. AUCD’s network is using research and evidence to improve classroom instruction, expand employment opportunities, improve training for teachers and health professionals, and promote federal and state policies that further the goals of the ADA and the Developmental Disabilities Assistance and Bill of Rights Act.

“Our expectations for what is possible for people with significant to complex disabilities have evolved,” said Imparato, adding that placing people in segregated workshop settings used to be considered a positive step. “Now a lot of our network is trying to get people out of workshops. Segregated places don’t really lead to a good quality of life or service to the community. So I think we keep raising the bar – getting more people into the middle class.”

Moving into the Future

With the ADA turning 25, a handful of advocacy groups decided it was time to try even harder in six key areas nationwide: employment, community living, education, transition, healthy living, and early childhood. The campaign, known as Six by ’15, aims to achieve improvements by the end of next year. To learn more about the campaign and/ or endorse the goals, please visit www.sixbyfifteen.org.

For instance, in the area of transition, the project aims to see at least six states commit to supporting successful and outcome-based programs and strategies for high school transition services, creating better opportunities for high school graduates to enter the workforce. And for community living, the program wants at least six states to implement the Community First Choice Option.

So far, more than 140 different research and advocacy organizations have agreed to endorse the Six by ’15 initiative. The list of supporters is especially impressive since, as Johnson admits, the disability community often tends to work in siloed environments – cutting themselves off from their peers who might be focusing in similar areas. Their inclusion is bringing renewed momentum and discourse at all levels of state and national government. By working together on some common goals, these groups are achieving what may well define the next 25 years of activism in post-ADA America: cross-disability collaboration, coordination, and full integration.