Looking at the Americans with Disabilities Act: 30 years later … and during a global pandemic
By Lauren Young / Daily News Staff
Posted Jul 26, 2020 at 12:01 AM Updated at 2:02 PM
“People with disabilities, whether or not they’re elders, have disproportionately been victims of this pandemic,” said Paul Spooner, director of the MetroWest Center for Independent Living. “We can’t allow what has happened to happen again. My biggest fear is getting sick and ending up at a nursing home, then I lose my dignity, my privacy – everything we as human beings strive to have. Is it fair to make me suffer without that because I have disability?”
REGIONAL – There are about 56,000 people living in Massachusetts nursing homes, but about 10,000 to 20,000 of them could be living in their own homes.
That’s according to Paul Spooner, director of the MetroWest Center for Independent Living, who said finding a place to live at home with care – and affording it – remains a problem for people with disabilities 30 years after the Americans with Disabilities Act (ADA) was passed on July 26, 1990.
The act doesn’t guarantee private housing, but nine years after it was passed, the U.S. Supreme Court ruled in favor of the Olmstead v. L.C. decision because of it.
The decision was made on June 22, 1999, and ruled that the unjustified segregation of people with disabilities is discrimination because it violates the ADA, and that individuals have a right to live in their community when appropriate instead of in an institution. But how people with disabilities can afford to live on their own outside living with others – like in institutions and nursing homes – remains a question.
“It’s just available housing because there aren’t much other resources for people living in the community,” said Spooner, 65, who has muscular atrophy and has used a wheelchair since he was 7 years old. He can afford to live in his own home, but lack of Medicaid funding prohibits others from doing the same.
“Just look at where the highest death toll of people is,” he said. “It’s in nursing homes.”
He’s referring to over 43,000 residents and healthcare workers who have died from COVID-19 at long-term care facilities, like nursing homes, across the nation – representing over 40% of all confirmed coronavirus cases. In Massachusetts, 5,398 people in long-term care facilities have died from it as of July 23, according to the Massachusetts Department of Public Health.
While disability alone might not increase someone’s risk of getting COVID-19 or developing a severe illness because of it, underlying medical conditions will, according to the Centers for Disease Control and Prevention.
On average, the MetroWest Center for Independent Living helps out 20 to 30 individuals with disabilities a year move out of nursing homes, said Spooner. But now, most of the organization’s plans are on hold. Staff from the center can’t even access nursing homes to interact with them, he said, and it can be difficult to meet over the phone or computer if they don’t have access to that.
“People with disabilities, whether or not they’re elders, have disproportionately been victims of this pandemic,” said Spooner. “We can’t allow what has happened to happen again. My biggest fear is getting sick and ending up at a nursing home, then I lose my dignity, my privacy – everything we as human beings strive to have. Is it fair to make me suffer without that because I have disability?”
The ADA, signed into law by President George H.W. Bush, prohibits discrimination based on disability, defined as “a physical or mental impairment that substantially limits a major life activity.”
“George Bush Sr. said, ‘Let the shameful wall of exclusion finally come tumbling down’ – and they have,” said Spooner. “The Fourth of July is a day where most people celebrate their civil rights. July 26 is my Fourth of July.”
Since 1990, more people with disabilities are working, and more businesses, restaurants and buildings are ADA-compliant, said Spooner. Daily nuances, like disabled parking, elevators and automatic doors have also improved considerably, he said.
“So many places are being built fully accessible from the beginning, vs. 30 years ago when it was more about retrofitting and modifying existing buildings,” he said.
Accessible transportation has also traveled far, said Kathy Gips, director of training at the New England ADA Center, and she’s reminded of it whenever she sees someone in a wheelchair taking a paratransit. Still, not all the lines on the Massachusetts Bay Transportation Authority’s (MBTA) Commuter Rail are ADA-compliant, such as on the Franklin line.
Many other barriers also have yet to be broken.
On a weekly basis, the MetroWest Center for Independent Living files about four to five complaints relating to building accessibility under regulations set by the Mass. Architectural Access Board, said Spooner. This equals to about 200 complaints a year.
Many municipal buildings are still not ADA-compliant, said Gips, and as a push is made for outdoor dining amid the pandemic, making it accessible for everyone is often neglected, said Spooner. Handicapped spots are usually the first to go when it comes to finding a place to put outdoor seating in a parking lot, he said, and some businesses line up planters along the curb, blocking curb cuts so people using wheelchairs can’t get on the sidewalk.
Providing interpreters for those who are deaf also remains very expensive, said Gips.
“We hear (how expensive it is) from a lot of doctors and dentists because (interpreters) often cost more than the amount that person is paying, or what their insurance is paying, for that visit,” said Gips. It’s also an issue if someone who is deaf wants to participate in any town meetings or other forms of government but has no one to interpret for them, she said.
Making websites accessible for those who are partially sighted or blind also remains an issue, and has been the subject of many lawsuits over the years, said Gips and Spooner.
As more businesses have shifted online due to the pandemic, many people with disabilities are turning to the internet to buy the essentials – which can be a problem if a website isn’t accessible to them, said Spooner. Using assistive technology, someone with visual impairments can understand what’s on a website, and features like closed captioning and creating alt text for all photos, videos and audio files on a website can help them do that.
The amount of calls made to both the MetroWest Center for Independent Living and the New England ADA Center in Boston have escalated regarding these issues.
The MetroWest Center for Independent Living yields a caseload of about 500 people in the MetroWest region, and receives calls from over 1,000 people annually, said Spooner. During the coronavirus pandemic, many of those calls have included picking up prescriptions and groceries, help with ordering online and providing personal protective equipment (PPE) like masks and gloves for people with disabilities, he said.
Over at the New England ADA Center, staff are taking more calls from people concerned about not being able to wear masks because of a disability or worries about returning to work or a university and catching COVID-19 or worsening their current conditions, said Gips.
When it comes to wearing masks, the ADA requires that public places make a reasonable accommodation for someone with disabilities if they can’t wear one.
“That doesn’t mean they have to allow someone inside without a mask – it just means they have to make a reasonable accommodation for them,” she said.
As a result of this pandemic, Spooner foresees an increased need for mental health services for those who are disabled, as anxiety levels have skyrocketed for certain people with others facing situations like domestic violence or child abuse.
That’s why staff at the MetroWest center perform regular wellness check-ups on clients, said Spooner, though he worries some are not adequately addressing their medical conditions with their doctors, as most hospitals have been routinely overwhelmed with COVID-19 patients.
“It just shows you how fragile some of our systems are,” he said.
However, some positives have emerged during this time, one of them being money the MetroWest center received via the Coronavirus Aid, Relief and Economic Security (CARES) Act to spend on people especially affected by the pandemic. The center received a small amount of money, said Spooner, but with that amount, they will be able to buy a laptop for a woman with a disability who could only access internet at the library, where she spent most of her time searching for housing, and the center can also build a wheelchair ramp for a local 4-year-old whose grandmother has to carry him out of the house to leave.
In the 30 years since the ADA was passed, Spooner said one of its greatest accomplishments was teaching a new generation of people that they have a right to access the world around them.
“The inspiration I feel from young people with disabilities talking about the intersectionality of disability, race, poverty and the sense of empowerment they feel for their place in society is a result of the ADA,” he said. “It’s what keeps me going working in this community.”