One of Lorraine Simpson’s favorite things to do is cook curry chicken. But for the past three years, she hasn’t been able to do that. Her room at Hermitage HealthCare nursing home in Worcester doesn’t have a kitchen, and she can’t go to the store.

Her situation is an example of what can happen to too many people with disabilities: unable to find a place or the resources to live on their own, they end up “warehoused” in a nursing facility. Simpson was a plaintiff in a federal class action lawsuit, which argued that the state was in violation of the Americans with Disabilities Act by allowing this practice to become commonplace.

“There are a lot of people, a lot of our clients, who are in nursing facilities, who could be managed in the community and maybe never should have been placed in the facility to begin with because there should have been community-based programing that could have supported them,” said Simpson’s legal guardian Sara Spooner.

Thanks to a recent settlement, the state will set up programs to help people like Simpson transition into living in the community. Starting this summer, the work will be underway to move each of the thousands of residents covered by the settlement into housing that’s tailored to their needs.

Finding her independence

Many people with disabilities fall into a gap in services, unable to find a living situation that will meet all of their needs. Simpson experienced that firsthand. Before living at the Hermitage, she spent periods unhoused. Then she was hospitalized.

“There were not, at that time, programming available that she could then transition into from the hospital setting. So she ended up in the nursing facility setting,” Spooner said.

Simpson recently got good news: In a few weeks, she has plans to move to a shared group home. She told GBH News that she had a lot to look forward to.

“My grandkids can come over. I can cook for myself. I can clean my whole house. I can do everything,” she said.

“This case is really about dignity. It’s about autonomy, and it’s about equity for older adults and people living with mental illness.”
Kristyn DeFilipp, attorney with Foley Hoag

The home in Shrewsbury will be staffed all day, where someone will be able to help with her medication, get to medical appointments and go food shopping. And there will be a kitchen.

It will be quite a shift from the Hermitage. On a recent spring day, her lawyers and advocates met with Simpson at the nursing facility to talk about her move.

“There are a couple of chairs right outside the front door. But people very rarely can even use those chairs. So the individuals who are here are pretty much locked in all the time,” said Steven Schwartz, a lawyer at the Center for Public Representation, who represented the plaintiffs in the class action suit.

“Today’s a really beautiful day. 75 degrees, and sunny, but they won’t have any opportunity to enjoy that,” he said.

Simpson said she has gotten good care at the facility, but still wants to leave. During an interview, Simpson, who is originally from Jamaica, started to sing a song of freedom: “Redemption Song” by Bob Marley.

‘I want to get out of here’

The path to independence is more complicated for people like Richard Caouette, another plaintiff in the lawsuit.

In his room at the Bear Mountain nursing facility in Worcester that he shares with a roommate, he has some Patriots posters and signs thanking him for his military service in Iraq, but that’s about all there is to make it feel like a home. All around him are the hums of medical machines, beeping and disruptions from other residents.

“I want to get out of here so bad. It’s making me worse, living here,” Caouette told GBH News.

Bear Mountain was the focus of a recent investigation by the Disability Law Center, which found “appalling” conditions and examples of “understaffing, overmedication, and neglect.” In a statement to GBH News at the time of the report, Bear Mountain defended its care for patients, but said that it will work to improve conditions.

Caouette said he’s found the staff to be caring, but he has been there for four years and still wants to get out as soon as he can and get his own place.

“I want to ... eventually get my own apartment if I can afford it,” he said.

A man with gray hair to his shoulders sits on a nursing home bed. The sheets are folded up behind him. A New England Patriots poster is visible in the corner of the room.
Richard Caouette at the Bear Mountain nursing facility in Worcester on May 7, 2024.
Meghan Smith GBH News

Caouette has epilepsy, diabetes, a hearing impairment and several mental illnesses. Before the nursing facility, he struggled to find housing that he could afford and couldn’t access support services without a place to live.

“I was living on the streets. And then I had depression, then I was going to Salvation Army to wash up, shave and shower, eat some food, take my medication,” he said.

Spooner, also Caouette’s guardian, says the fact his psychiatric conditions have been stable during his stay at Bear Mountain is proof he can live independently.

“The fact that he can maintain the stability that he has in such an unstable environment, I think speaks to his ability to be able to be managed in community,” she said.

Caouette has applied to the Moving Forward Program, the same program as Simpson, to find a living arrangement. But he has been denied three times because the program said he needs too much oversight for his psychiatric conditions.

His advocates are appealing that decision, arguing that it’s a violation of the ADA to not make reasonable accommodations that would keep him out of institutions, such as training staff on the communication style that is best for him.

Spooner hopes that the settlement will help Caouette.

“I’m hoping that what it means for him is that the services that he is entitled to, the accommodations that he’s entitled to, will be made available to him under the improved programming through the settlement,” she said.

If he gets housing, Caouette says he wants to get back into his hobbies that he hasn’t been able to do while inside the facility.

“I used to take care of the garden, the flowers and stuff like that,” he said. “I like to bowl. I haven’t been bowling in a long, long time.”

Next steps for the settlement

The state says that, over the next eight years, the settlement will enable at least 2,400 people to move out of nursing homes. New and expanded supports include housing subsidies and rental vouchers, case management and outreach, and support services to help people navigate the transition.

Advocates for people with disabilities are hopeful about the impact of the settlement, even as they say some details are vague and it can’t address all the challenges.

“This case is really about dignity. It’s about autonomy, and it’s about equity for older adults and people living with mental illness,” said Kristyn DeFilipp, a lawyer at Foley Hoag, which helped bring the suit.

The settlement may also save taxpayer dollars, she said.

“Now you’re going to have people who are living in a less restrictive environment. And often that would mean a less expensive environment, as well,” DeFilipp said.

Lisa Gurgone, CEO of Mystic Valley Elder Services, says that the settlement will benefit their Community Transition Liaison Program, which brings staff into nursing homes to help people set up a transition plan.

The program was started with donor money and will now get state funding.

“This will really solidify that funding long term and allow us to keep those staff who ... help people with barriers to going home,” she said.

Last year, they helped 113 people transition out of nursing homes, and Gurgone said they expect to increase that number. She particularly wants the program to help people who face significant barriers like navigating time-consuming housing applications, social security benefits or sealing their criminal records so they can access public housing.

Lisa Felci Jimenez, director of clinical services at Mystic Valley, said that there’s a need for more varied options for housing.

“Really, our nursing facilities have become almost like shelters. We’re housing people that aren’t appropriate. They could step down with support, but they might need more supervision than they could have, like in an apartment,” she said.

Program administrators like Gurgone are waiting on more details from the administration about the settlement. But they say access to housing has to come before some of the agreed-upon changes — like rental subsidies and home modifications — can ultimately benefit anyone.

“I’m sure we’ll be able to help more people. That will be great. But ... it can be an uphill battle,” she said. “There’s a lot of talk about housing, but until we actually have the housing, these people are still kind of waiting. That’s the reality.”