In 2024, Richard Caouette was eager to move out of the Worcester nursing home he had lived in for more than four years. But the 66-year-old man with epilepsy was stuck, sharing space with a roommate, surrounded by medical equipment.
Two years later, Caouette’s life couldn’t be more different. He lives in a group home on a quiet street in Northborough, where around-the-clock aides help him with daily living. He has his own room, decorated with Patriots’ posters. On Sundays, he watches football.
“I got my American flag. I got my diploma from the military. I got my Patriots sign up on the wall … with the Super Bowls that they won,” Caouette told GBH News recently on a tour of his new home. “I’m doing a lot better.”
Caouette is one of the beneficiaries of a settlement prompted by a federal lawsuit filed in 2022 against the state of Massachusetts arguing that thousands of disabled people were being left to languish in nursing homes who could otherwise live in the community.
In 2024, the state agreed to help thousands of people find new homes by expanding community programs and facilitating access to affordable accessible housing. So far, at least 350 people have moved to new homes, according to the state.
Advocates say Caouette’s journey is a success story — a blueprint to give older adults and people with disabilities more autonomy. It’s already having an impact here and across the country. The state hopes to help at least 2,400 people over the next eight years.
“Some folks have been able to return back to their own homes with modifications, some have gone with families, some have gone into group homes or supportive housing settings,” said Paul Lanzikos, co-founder of Dignity Alliance Massachusetts, a coalition of advocates for older adults and those with disabilities. “The important thing is that the people are able to live their lives in ways of their own determination — and actually that’s a win for them and a win for taxpayers, too.”
A new life
Before moving to a nursing facility, Caouette had experienced homelessness and struggled to access services without a permanent place to live. He was admitted to the for-profit Bear Mountain facility in Worcester in 2020, after being hospitalized and getting psychiatric care. A 2024 report from the Disability Law Center found “appalling” conditions and neglect at the facility. Caouette said the staff was caring there, but he missed his independent life.
Like many other disabled people living in nursing homes, he says he never intended to stay for long, but couldn’t find a way out. A tall lanky man who turns 67 this month, Caouette has several disabilities, including epilepsy, diabetes, a hearing impairment and several mental illnesses. He usually uses a walker to get around.
He applied multiple times to the MassHealth Moving Forward Program, a state program that provides waivers for people who want to leave nursing facilities and requires 24/7 support. But he was denied, partly because of safety concerns, even though his advocates say his behavior was misinterpreted because of his hearing loss.
Steven Schwartz, a lawyer at the Easthampton-based Center for Public Representation, who worked on the federal case, said Caouette’s journey to the group home where he now lives was “unnecessarily painful.”
“Painful, first because he probably shouldn’t have been in this nursing facility in the first place and certainly shouldn’t [have] been in it for as long as he was,” he said. “Second, there were numerous attempts to get him out before the lawsuit and even after the lawsuit was filed.”
The difference in Caouette’s daily life now, compared to his life before, is “extraordinary,” his advocates say. He lives with two other men. The two-level ranch house has a living room, large kitchen and three bedrooms. The house has support staff to help with daily tasks like bathing, cooking and cleaning.
Schwartz says Caouette is a true-life model showing the importance of the litigation and settlement agreement for people with disabilities.
“I think he’s a powerful and close personal example of what the case is about, what community living can mean,” he said. “There have been many others.”
Expansion of programs
Advocates say the settlement also has provided new resources to organizations that help people with disabilities and older adults. They include a now-mandated state program, called the Community Transition Liaison Program, which brings teams into nursing facilities to inform people about their options.
Lisa Jimenez, director of clinical services at the Mystic Valley Elder Services, told GBH News that organizations like hers have been able to expand their work “exponentially.”
“This is such a gift to us,” she said. “Now we’re able to have two full-time [liaison program] staff … they cover 17 nursing facilities in our service area. And this is mirrored throughout every single nursing home in the entire state of Massachusetts.”
Jimenez recently worked with a woman who was able to leave a nursing facility and move into an apartment in Melrose. Through the Money Follows the Person Demonstration, a federally funded program that provides support for people who have been in nursing homes for long stays, Jimenez helped the woman find a place to live, as well as set her up with furniture and even books for her bookshelf.
“Now she’s doing really well,” Jimenez said. “She’s made friends, she’s getting out. She’s able to go to the bookstore herself and buy her own books.”
Jimenez says everybody benefits from these efforts: Monthly expenses at a nursing facility can be more than $8,000 a month. Now, the cost of her support services is less than $1,000 a month.
“We’ve saved the state thousands of dollars on her care,” Jimenez said.
The settlement also has made an impact outside of Massachusetts. Lawyers say that the agreement, as well as several previous state cases, have laid the foundation for similar lawsuits in Illinois, Missouri, Texas and Washington, DC.
“There’s clearly a movement,” said Schwartz, of the Center for Public Representation.
But in a state where affordable accessible housing is in short supply, there is still a long way to go to house all those seeking to leave nursing homes.
“We could have a mirrored success case just like this woman,’’ said Jimenez. “The only thing that’s holding them back is waiting for housing.”
Of six named plaintiffs in the 2022 federal suit, at least two others have found homes in the community, and another is in the process of transitioning, according to Schwartz.
Another plaintiff, Lorraine Simpson, was able to move to a community home, but had to move back to a nursing facility for safety after struggling with symptoms of dementia and wandering, according to Schwartz, who also worked with Simpson.
The original named plaintiff in the lawsuit, John Simmons, died while still living in a nursing home before the settlement was reached.
In the settlement, the state’s Executive Office of Health and Human Services pledged to gradually add 400 spots over eight years. But, Schwartz said the state currently can’t meet the demand for people seeking to leave nursing homes in need of around-the-clock support, meaning dozens have been rejected and will need to re-apply when the program re-opens in April.
Advocates say the state’s target to meet the settlement goals is 2032.
“Overall, we’ve been pleased,” Lanzikos said. “It’s recognition that each of us has a right to live as freely as possible with reasonable accommodations.”
