The isolation can be terrifying and tragic. The stress can exacerbate mental illness and other health problems. Add the loss of mobility and independence, the disruption of routines: the beloved caregiver who doesn’t come, the day program that doesn’t open, the concern that lack of support will give families no choice but to institutionalize.
In the hospital, people who can’t speak are left with no one to communicate for them, vulnerable to the fear medical care will be rationed, given to someone deemed more worthy or valuable than themselves.
Though everyone has been suffering during the COVID-19 pandemic, people with disabilities have perhaps been the most disadvantaged, their lives the most disrupted.
Germán Parodi hasn’t left the Philadelphia home he shares with his 76-year-old grandmother since March. Parodi, who uses a wheelchair, worries his loss of fitness opportunities will affect his cognitive abilities, so he’s made sure to stay extra busy. He’s on video chats and phone calls seven days a week, he said, working for a nonprofit group he co-runs to help others with disabilities.
The situation would be far worse, he and other advocates said, without a law that turned 30 Sunday.
The Americans with Disabilities Act, signed on July 26, 1990, by President George H.W. Bush, guarantees equal protection for people with a wide range of disabilities, from mental health issues to physical challenges. It was modeled after the 1964 Civil Rights Act, providing equal access to government services, schools, buildings, private employers and commercial facilities.
President George H. W. Bush signs the Americans with Disabilities Act during a ceremony July 26, 1990, on the South Lawn of the White House. Joining the president are, from left, Evan Kemp, chairman of the Equal Opportunity Employment Commission; the Rev. Harold Wilke; Sandra Parrino, chairman of the National Council on Disability; and Justin Dart, chairman of The President’s Council on Disabilities.
“We are in a much better place in 2020 than we were in 1990. Dramatically better,” said Michael Ashley Stein, co-founder and executive director of the Harvard Law School Project on Disability and a visiting professor at Harvard Law School.
Although the ADA has made a profound difference, it hasn’t removed all prejudice against people with disabilities – any more than the Civil Rights Act resolved all bias against Black people.
“Other than rare instances of overt animus, most of the discrimination we see towards people with disabilities in this country tends to be from what we call ‘malign neglect,’” Stein said. “It’s not that we’re trying to exclude them from opportunity, it’s that we didn’t even bother to consider them eligible or worthy of opportunities.”
The ADA, like other civil rights laws, Stein said, “puts the burden on the oppressed to make changes,” requiring an endless fight to protect those rights.
Some of those fights have garnered headlines during the COVID-19 outbreak, such as when treatment was stopped for a Texan named Michael Hickson, who was paralyzed for three years before catching the virus. Others have happened more quietly – Parodi is helping one of his clients stay out of a nursing home.
More than 1 in 4 adult Americans have some kind of disability that limits their daily functioning. Whatever helps them will probably help many more people, said Dr. Oluwaferanmi Okanlami, an assistant professor of family medicine, physical medicine and rehabilitation at the University of Michigan. Curb cuts at street corners, for instance, allow wheelchair users easier access to sidewalks and also help parents with strollers and those using dollies to make deliveries.
There’s a lot the “abled” community can learn from the disabled community during the pandemic, said Okanlami, who was an all-American varsity track athlete at Stanford University and an orthopedic resident at Yale before a diving accident seven years ago. People with disabilities are used to the uncertainty of medical challenges. They’re used to having to ensure they’ll be safe if they try a new restaurant or a new hotel. “We’ve had to do that,” he said.
The pandemic might help give people with disabilities a more even playing field, he said. A disability may be less evident via Zoom; many more people order food and get groceries delivered. Like anyone else, Okanlami said, people with disabilities can contribute to society if given the right tools.
“We can do so much more to support people with disabilities than we are doing,” he said.
Calling on legal protections
The ADA has been invoked repeatedly during the pandemic to protect people with disabilities. Early on, Alabama created a rationing system for ventilators used to treat people severely ill with COVID-19. Those with intellectual disabilities weren’t eligible to be put on a ventilator, according to the state’s rules. The federal Office of Civil Rights declared that a violation of the ADA, and the state revised its prioritization list.
“This is another example of a very powerful way that the ADA is an important tool to stop some of the most insidious discrimination – literally discrimination that will have an impact on ‘will you live or will you die,’ ” said Alison Barkoff, director of advocacy for the Center for Public Representation, a public-interest law firm that focuses on the disabled community.
Barkoff said she’s been working to change the no-visitors policy that many hospitals instituted in the early days of the U.S. outbreak. People who do not communicate through speaking, she said, need a caregiver in the hospital who can make sure they understand medical procedures and choices and help them make care decisions.
Barkoff’s organization filed complaints against hospital visitor policies, citing the ADA. Connecticut agreed that to provide equal access to treatment, hospitals in the state must allow in-person support for people with communication challenges. Barkoff said other states are following Connecticut’s lead.
“That’s another place where we’ve been using the ADA to make sure people get what they need during the COVID crisis,” she said.
The ADA and subsequent legislation guarantee people with a disability a spot in a nursing home if they need substantial care. It doesn’t guarantee aides for people who would rather live on their own or with family or friends with some support.
Lack of funding for community services – paying for aides and proper masks and gloves, for instance – might deprive people of their rights under the ADA, Barkoff said.
“If people are losing services, if states are not thinking about ‘how do we make sure we’re keeping people in their own communities,’ and people are being forced into institutional settings, that’s absolutely a violation of the Olmstead Act and the Americans with Disabilities Act,” Barkoff said, referring to a follow-up law in 1999 that prohibited segregating people with disabilities from the community. The federal Centers for Medicare and Medicaid Services recently reminded states of their obligation under the two laws, she said.
Parodi, the Philadelphia advocate, said he counsels a California woman who moved out of a nursing home at the beginning of the pandemic, fearful of infection and the home’s lack of protective gear. She hired workers and was living on her own but is losing access to them and may have to return to the nursing home.
She fears that’s akin to a death sentence, said Shaylin Sluzalis, co-executive director with Parodi of the nonprofit Partnership for Inclusive Disaster Strategies, which counsels people with disabilities coping with disasters or emergencies.
More than 40% of the COVID-19-related deaths nationwide have occurred in nursing homes; Parodi said that in his home state of Pennsylvania, the figure is 77%.
“We need the right community services to be able to fully enjoy the rights of the ADA,” he said.
Disability rights groups lobby Congress to include funding for community services in the next pandemic bill, which is slated to be made public Monday.
Julia Bascom, executive director of the Autistic Self Advocacy Network, hopes the public mood is shifting in favor of community support. “Institutions have always been a form of discrimination and have always been dangerous, but the pandemic has really brought this to the forefront of the general public’s mind in a way we haven’t seen for a long time,” she said.
Law is to ensure access, education
The ADA guarantees people equal access to public spaces such as school buildings, restaurants, hotels, movie theaters, health facilities and stores. Building design has changed over the decades since the passage of the act to incorporate ramps, wider doorways and elevators.
Still, there are buildings where the only way in is up the stairs.
“That is the height of feeling like you’re not wanted, you’re not seen, you’re not valued,” said Okanlami, who serves as a spokesperson for the Guardian Life Insurance Co. of America in its Equal & Able partnership. “There are so many places where individuals with disabilities are disadvantaged.”
Okanlami said that after his accident, when he started using a wheelchair, he felt unwanted and unseen. “I don’t think that people are always intentionally putting up these barriers,” he said. “Oftentimes, people just don’t know that those barriers are there.”
Such environmental limitations have become even more problematic during the pandemic, he and others said, when people need safe access to buildings and opportunities to exercise.
One of the transformative facets of the ADA was its requirement that children with disabilities be given an equal education. The pandemic has stretched every school in the country, and children miss out on academic progress and the social aspect of education. For children with disabilities, the problem is even more acute. Some depend on the consistency and schedule of the school day. Others need constant in-person attention to make progress.
Aiden and Noa Fried, 5-year-old twins with the neurological disorder dyspraxia, will be a year behind when they start kindergarten.
Twins Aiden and Noa Fried of Deerfield, Illinois, will have missed six months of the therapies they need and be more than a year behind their peers by the time they start kindergarten this fall. They have the neurological disorder dyspraxia, which affects motor skills, memory, processing and other cognitive skills.
Their preschool social worker helped them play-act and memorize social situations, said their father, Warren Fried, who also has dyspraxia. That all stopped when schools shut down in March.
Aiden can no longer name the foods in the refrigerator or describe whether he is hungry as opposed to thirsty. He will have to learn them all again, when he goes back to school, said Fried, founder of the Dyspraxia Foundation USA.
There, each will have three therapists and one classmate “buddy” as part of individualized education plans. That’s if the classrooms open and those specialists are willing to show up.
“My kids can’t work on Zoom,” Fried said. “Someone has to physically guide their movements. To praise and reward is great, but experiences and memorization to be a full-fledged member of society is vital.”
People with the disorder, including Harry Potter star Daniel Radcliffe, often have depression and anxiety. The twins’ anxiety levels are “going through the roof,” Fried said. They both think they did something wrong to cause the social isolation, and this is the way life will always be.
“One day, COVID is going to be over, and everyone is going to be struggling to catch up,” Fried said. “Those in my community will have those struggles, but the lack of therapeutic supports (during the shutdowns) means we have to catch up even further.”
COVID-19 put a tremendous strain on programs for people with disabilities.
Day programs, shuttered in New York City in March, reopened last week, but only for people living at home, not for those in group homes.
Shutting down completely wasn’t an option for YAI, an organization that provides support for 20,000 people with intellectual or development disabilities in and around the city, including day programs and group homes.
It was very difficult at first, said Tiffany Goldson, YAI regional support supervisor for the Bronx. “There were so many things being thrown at us and not enough support,” she said.
Goldson cited the lack of personal protective gear, the closure of employment and day programs, the end of family visits and big birthday celebrations, rescheduling mealtimes to allow for social distancing, citywide curfews and the need to teach residents to stand far apart, wear a mask and wash their hands for 20 seconds – even if their sensory issues made that uncomfortable.
Some residents and staff got sick; 20 YAI residents and two employees died.
Gary Milchman, regional director of programs and services for YAI Manhattan, said it’s tough to fill those 20 open slots in his residences. This poses an emotional challenge – while residents and staff members grieve for their lost friends – as well as a financial one: The government pays by the person, so an empty bed means less funding, although the other residents still need the same services.
YAI is big enough and financially stable enough to weather such financial challenges, he said, but other social services agencies that cater to people with disabilities might not be.
For YAI, the main goal remains “making sure every one of our individuals is treated as an individual … so they can live the most independent, enjoyable, productive life possible,” Milchman said. “To me, that’s living up to the true spirit of the ADA.”
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This article originally appeared on USA TODAY: As ADA turns 30, COVID-19 hits those with disabilities especially hard