After being hospitalized from several medical challenges, John Simmons arrived at a nursing home in Everett for what he expected to be a short stay. Three years later, he’s still there. Simmons, who uses a wheelchair and relies on portable oxygen to help him breathe, could live on his own. But like many people with disabilities in Massachusetts, he’s stuck in a nursing home because he can’t find an affordable place where he can live.
“I’m able to groom myself without help. I can cook. I can clean. I might not do it all fast and everything as some people can, but I can do it,” Simmons said. He would need a place on the first floor or in a building with an elevator, and some in-house medical care — but can’t get those services without housing.
“It’s just me getting a roof over my head, to be able to utilize those services,” Simmons said. “Where would I go? To a shelter? A shelter doesn’t have the accommodations for me — I’m on oxygen, they don’t have those accommodations there.”
Simmons, 74, is a plaintiff in a federal class action lawsuit filed in October in Boston that contends the state of Massachusetts is allowing thousands of people with disabilities to languish and often deteriorate in nursing facilities, even though they could be living independently. The lawsuit seeks to compel the state to expand existing programs and set up new ones to help people with disabilities transition out of nursing homes.
“It’s considered a violation of the Americans with Disabilities Act to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community,” said Deborah Filler, a lawyer with Greater Boston Legal Services, one of the groups representing the plaintiffs.
The problem is not new, but when COVID-19 hit nursing homes in the state, advocates say it added a new urgency. According to the lawsuit, more than 6,000 nursing home residents died during the first six months of the pandemic — one in every seven people living in nursing homes.
“It just became even more urgent and more imperative for us to pursue legal action, to try and require the state to get more and more people out of these facilities,” Filler said.
Simmons says he wanted to join the lawsuit because he saw the toll that being inside a nursing home during the pandemic took on people who couldn’t get out.
“I know three or four people who are here now, who would be able to suffice on their own if given the opportunity,” he said about his experience at the Rehabilitation & Nursing Center at Everett. “We need to re-enter our life at some point in time because it’s almost like a prison sentence.”
GBH News reached out to the Massachusetts Office of Health and Human Services, whose secretary is named as a defendant in the class action lawsuit. The agency declined to comment.
‘I haven’t seen a full moon in years’
Simmons went to the nursing home because he felt like he had no options after being released from the hospital three years ago. He had been living in a fourth floor apartment with no elevator in East Boston, which had become increasingly difficult to access. He eventually lost his housing voucher, which had helped him pay the rent.
“When I first got the [housing] voucher, I didn’t have any special needs. I was able to go up, up and down the steps, my breathing wasn’t that traumatic,” he said. “But after 11 years my breathing deteriorated to the point where I couldn’t walk up the steps.”
Simmons is grateful for the medical care he’s received in the nursing home, but he says it’s taken a toll on his mental health. A pandemic-era policy prevents residents from leaving the facility on their own unless they are going to a medical appointment, and Simmons misses his independence and simple pleasures like grocery shopping, going for a walk outside and doing his own laundry.
“I’m unable to get out, walk around the community. I’m unable to do my own food shopping. I’m unable to do my own laundry,” he said. “I haven’t seen a full moon in years. You know, those are things that go into making a wholesome life.”
Simmons’ story is not unique, say disability advocates. It underscores the challenge that many disabled people face in finding affordable housing, especially in the Boston area.
For a population that is twice as likely to live in poverty as people without disabilities, stable housing is a lifeline that can be hard to achieve, especially in a region with so many people already rent-burdened and struggling with a lack of affordable housing. In 2021, almost half of all renters with disabilities struggled to pay their rent.
Many people with disabilities who are low-income depend on federal Supplemental Security Income, but it’s not enough to cover market-rate rent, according to a report from Boston-based nonprofit Technical Assistance Collaborative, which researches affordable housing. Nationally, the cost of a one-bedroom apartment is about one and a half times the monthly Supplemental Security Income rate. In the Boston area, a person on SSI would have to spend about twice their allowance to afford a one-bedroom rental.
“There’s really no statistical area in the country where you can be a person on SSI and be able to afford to live just in your own apartment without any sort of rental subsidy from the state or federal government,” says Lisa Sloane, a director at Technical Assistance Collaborative. “It’s not possible.”
When people with disabilities can’t find affordable housing, the researchers found that they often end up institutionalized in nursing homes or jails, living on the streets or spending a large part of their limited income on housing.
“People with disabilities — who have significant disabilities and are stuck in congregate settings or nursing homes — they can’t just move on their own. They require support and assistance,” Sloane said.
“It’s considered a violation of the ADA to unnecessarily keep people with disabilities warehoused in institutional settings when people could safely live in a more integrated setting in the community.”
-Deborah Filler, Greater Boston Legal Services
That support can sometimes come from the state — if there are enough resources and political will. Steven Schwartz, the legal director of the Center for Public Representation, one of the groups representing the plaintiffs in the class action lawsuit, says that historically, people who have a combination of complex medical and psychiatric needs — like John Simmons — don’t neatly fit under the purview of certain state agencies.
“Some of the agencies that are responsible for providing community services to older adults with physical disabilities, to people with behavioral health conditions — they just don’t think of people in nursing homes as really their responsibility,” he said.
A lack of funding and “bureaucracy” share part of the blame, according to Sara Spooner, a social worker who is serving as a legal guardian for five of the plaintiffs in the lawsuit, who range in age from mid-thirties to mid-sixties.
“These individuals, at least my five plaintiffs, are only in the facility because there’s just nowhere else for them to go,” she said. “And so they are now stuck in the nursing facilities that are not equipped to manage them, and were never equipped to manage them, but have become the last stop for people whose diagnoses are undersupported [by] state agencies.”
Nursing homes in the state are struggling with a workforce shortage, putting a strain on the facilities. And for people who want to live on their own, there is a shortage of home health care workers — both problems exacerbated by the pandemic. That makes it difficult for people who can and want to transition out of a facility, explained Lisa Gurgone, CEO of Mystic Valley Elder Services.
“Right now, the workforce challenge is really hard … so those barriers are there,” Gurgone said. “If they’re in a nursing home for too long, and they lose their housing, that’s even more difficult because we have to try to find them housing. And there’s just not a lot of accessible affordable housing in Massachusetts.”
Anne Johansen, 71, has a progressive neuromuscular disease and uses a power wheelchair. She always feared ending up in a nursing home. As the disease worsened, she found herself spending seven years in four different nursing homes. It was worse than she imagined — an experience “like falling into hell.”
Johansen says residents were hungry all the time because the food was not nutritious. The bathrooms were often dirty. Patients with dementia wandered the halls while night shift staff slept.
“I was just very unhappy,” she said. She cried so much that she had to hide her used tissues in a drawer, fearing someone on the staff would notice and get mad.
It made her question her life. “It got so bad there that I just thought, you know, if this is how my life is going to be, I don’t want the rest of it. I’m done, I’m outta here,” she said. She attempted suicide and went to Carney Hospital to recover before going to another nursing facility in Wakefield.
Finally, after seven years, she got lucky when a friend connected her with the Boston Center for Independent Living, who helped her secure a mobile Section 8 voucher, federal assistance for paying rent that can be used in any town or municipality.
After an exhausting housing search, Johansen finally found an apartment she loved in Quincy, on a street lined with trees.
“It was such a sanctuary, such a safe place,” she said.
She now lives at a complex for the elderly and disabled in Hanover, close to family, where she gets to spend time with her grandkids. She credits the Boston Center for Independent Living for helping her get that voucher and changing her life.
“I just felt so grateful to them for saving me,” she said.
Advocates say there is a blueprint to follow if the state wants to act. They point to a wide range of services that would help: more accessible affordable housing, more subsidies and vouchers, increased resources home-based medical support, expanded support in group homes and better case management to inform people of their options.
According to Schwartz, the state could increase capacity to help more disabled people by following a model set up by two previous legal cases which required state agencies to allow 3,000 people with intellectual disabilities and brain injuries to move back into the community by creating residential programs. Schwartz says the state needs to do the same for people with all types of disabilities.
“We learned through both of those cases that the commonwealth can create community programs. … But the commonwealth has not done the same thing for everybody else who’s in a nursing home,” he said.
“There’s just not a lot of accessible affordable housing in Massachusetts.”
-Lisa Gurgone, Mystic Valley Elder Services
Johansen advocates for the Alternative Housing Voucher Program, which provides low-income people with disabilities under the age 60 a voucher that covers up to 70% of the market value of an apartment’s rent, in any.
“It’s a really important tool that was born out of some housing discrimination,” said advocate Olivia Richard, a member of Boston’s Disability Commission Advisory Board.
Richard, who is paraplegic, knows first-hand how important access to housing is. After an accident in her late 20s, she needed to go to a nursing home for physical rehabilitation, but she quickly returned home because she was just about to lose her affordable housing. The apartment that was not set up for someone with her disability, and she caught herself on fire while trying to cook.
“Housing is everything. I know when at times when my housing has been shaky or has been inadequate, my health has gotten worse,” she said. “People with disabilities want to be successful people. And the way that we start that off is by providing affordable, accessible, integrated housing.”
When asked what would help, Simmons had an answer.
“More affordable housing — that would help a lot,” he said.
Simmons hopes, some day, to enjoy the simple benefits of living an independent life. “I for one would like to go sit down in a restaurant, have a nice cup of coffee, maybe a slice of pizza,” he said. “You understand what I’m saying? And I would like to enjoy my life.”
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If you or someone you know is having thoughts of suicide, please call the National Suicide Prevention Lifeline at 988 or use the Crisis Text Line by texting “Home” to 741741. More resources are available at SpeakingOfSuicide.com/resources.