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Disabilities Beat: How NYS' budget could impact living opportunities for people with disabilities

A photo of a framed, undated photo of the Catalano family. In the top row on the left is James Catalano, a tall white man with dark buzz-cut hair wearing a dark-colored button down shirt. His brother-in-law Douglas Tubinis is to the right of him, and he's wearing a white button down shirt and has short dirty blonde/brown hair. In the bottom row on the far right is James' mother Barbara Catalano, a white woman with a short haircut with blonde highlights, wearing a dark blouse and red lipstick. James' father Joseph Catalano is in the middle of the photo, he is a white man with white, short swooping hair and is wearing a dark-colored polo shirt. On his lap is James' nephew John Tubinis, a baby boy with blonde/brown hair wearing a white and blue sailor shirt. James' sister Annemarie Tubinis sits to the left of Joseph and John, and she is a white woman with dark shoulder length hair, wearing a dark-colored short sleeve blouse, small hoop earrings and red lipstick.
Courtesy Annemarie Tubinis
An undated photo of the Catalano family. In the top row is James Catalano (left) and his brother-in-law Douglas Tubinis (right). In the bottom row is James' mother Barbara Catalano (right), James' father Joseph Catalano (middle) and his sister Annemarie Tubinis (left). Sitting on Joseph's lap is James' nephew John Tubinis.

New York is less than a week away from the deadline for the 2025 state budget. Every year, people with disabilities, their families, and the agencies that serve them watch this date closely, because the results of the budget vote will determine living opportunities for tens of thousands of New Yorkers. This week on the Disabilities Beat, we highlight one family's decades-long story of fighting for their loved one's opportunity to live in his community, which is now threatened due to a workforce crisis that many advocates attribute to underfunding in the state budget.

PLAIN LANGUAGE DESCRIPTION: Some people with disabilities live in group homes, which provide staff and resources to assist with living in the community. These homes were created so people with disabilities that need all-day support could live in their communities rather than an institution or hospital. The money that allows these homes to exist comes from the health insurance some people with disabilities are given by the government, called Medicaid. The insurance gives the organizations that run these homes a set amount of money each day for each resident to cover their needs, including the pay of the workers in the homes. However, these organizations say that for about 10 years, New York State did not increase how much money the organizations were given to pay the workers. Now, organizations say the wage is lower than most other jobs, which makes it hard for them to find workers.

James Catalano is a 49 year old man who has multiple disabilties, including schizophrenia. He used to live in a hospital as a child, but was able to go on a medication that helped stablize his schizophrenia, which is hard to treat. This allowed him to move home with his family. But the medication makes it hard for James' body to fight infections. So when he got sick, the medication was taken away, and he had to move into an institution. But his mother, Barbara, pushed for his doctors to try the medication one more time so he could live i n the community. This was around the time New York started having more people move into group homes, so New York State assigned James a group home once he was stable on his medication again. The group home was small and they found activities and tutoring for him that he only did with a few other people, so he wouldn't get sick. And he lived there for 23 years. But a few months ago, People Inc, the organization who runs his group home had to close it. The CEO of People Inc says they had to close it because they had a hard time finding staff to work there, because of the low wages. But now there is not a group home for James that meets his specific needs, like a small setting so he won't get sick and lose his medication as well as not being in a city because the city is difficult for him. So he is living at home with his mother and they don't have the support he needs.

People Inc and similar organizations are asking the state to increase the wages in this year's budget, which they will decide on this week. The organizations who run group homes are asking the state to raise the wage at the same rate as inflation, or how much the cost of other things like housing and gas are going up. But so far, the state has suggested they might not raise the wage as much as organizations say they need.

TRANSCRIPT

Emyle Watkins: Hi. I'm Emyle Watkins, and this is the WBFO Disabilities Beat. New York State's deadline to approve the 2025 budget is less than a week away. While the budget may seem like a complicated bureaucratic process, what's ultimately decided on in the coming days has a real impact on the daily lives of thousands of New Yorkers with disabilities. One of them is James "Jimmy" Catalano.

Barbara Catalano: If I was going to live forever, if I knew I was going to live another quality of life for the next 20, 25 years, and with him, that'd be different. I'm not.

Emyle Watkins: That's James' mother, Barbara. James is 49 years old and has several disabilities. As a child, James was institutionalized because of his schizophrenia. But Barbara fought for James to be transferred to the National Institutes of Health, and they were able to develop a treatment plan that could help him live outside of a hospital. And the introduction of the medication clozapine, an antipsychotic for treatment-resistant schizophrenia, changed his and his family's life.

Barbara Catalano: He was able to come home, and he went to high school again, to a small-setting high school, to a BOCES program.

Emyle Watkins: But clozapine puts you at high risk of neutropenia, a drop in a certain type of white blood cells that fight infection. The Catalanos were told that James could not get sick while on this medication, or they'd have to discontinue it. And when James did get sick, he lost access to his medication. Without it, he was re-institutionalized as a young adult, this time at the West Seneca Developmental Center on East and West Road. And again, Barbara fought, this time for the NIH to try the medication once more, cautiously, so he could have a chance at living in the community again.

Barbara Catalano: And it worked and he was able to walk out, again, out of an institution. But they told me then you've got to be very, very careful now. Because we know now that he's very compromised, that once he gets these viruses, it could send his whole regiment off and he can go into this neutropenia again. And things have to be different.

Emyle Watkins: At this point, it was the early 2000s, when New York State was moving towards a system of independent living through group homes and in-home supports.

Barbara Catalano: He came back to New York State and they awarded him a group home. And they awarded him this three bedroom group home in Angola, New York, at 51 Pleasant. They added two more clients to it, so that he wouldn't be alone. He was very successful there for 23 years.

Emyle Watkins: Annemarie Tubinis, his sister, explains that the home was his, built around his needs, his goals, his life. Staff understood him and his health precautions. He was able to get small-setting tutoring, and catch up on the school he missed as a child.

Annemarie Tubinis: We worked very hard to achieve that group home to where it was. And that's what his day would look like. It was very self-centered, it was person-centered. That was truly a person-centered programming.

Emyle Watkins: That person-centered care is how the independent living system was supposed to function. But not everyone who left institutions found the same success in the community as James. Michael Rembis is a historian who researches institutions, and has been documenting an oral history of the West Seneca Developmental Center at the University of Buffalo.

Michael Rembis: I think people generally were very excited about moving into the community, although deeply, in some cases, disappointed that there was a kind of lack of critical resources that would enable them to really thrive in the community. A lack of the supports that they needed. Not only in their daily lives and their daily care, but also in terms of community-level supports. Transportation, entertainment, access to healthy food and these kinds of things.

Emyle Watkins: But now, even people who are able to get the support they need to thrive, like James, feel their living situation is threatened, and fear re-institutionalization. Group homes are funded through state Medicaid dollars. Agencies get a fee per resident per day, and that fee determines how much agencies can pay workers. Over the past decade, advocates say inadequate funding has led to low wages for workers and caused a massive workforce crisis, thus leaving homes to close and consolidate, including James's group home.

Barbara Catalano: And because of this, my son has no place to go. His home was ripped out from him. And it's very difficult for him because he's used to group home living. He's not used to being in to a family.

Emyle Watkins: James is now living at home with Barbara, who is 72 years old. To get home care, they'd have to switch the program he's enrolled in and it wouldn't cover the 24-hour care he needs. But neither of the group homes People Inc, who provides James's services, has offered, can fit his exact needs. I reached out to Anne McCaffrey, the CEO of People Inc. She says that while they can't comment on specific situations, she says they closed two group homes in rural areas because finding and retaining staff is difficult, especially in areas with smaller populations.

Anne McCaffrey: We really do everything we can to avoid having to make a decision like that. But at the same time, we've got to ensure the safety of every person living in our group home. And once it looks like the staffing model cannot support that, then we have to make a decision to make options available at other locations that we can staff.

Emyle Watkins: McCaffrey points out that up until two years ago, there was a decade of stagnation in wages for group home workers. Now it's an uphill battle to get the state-determined wage to a competitive level. And this trickles down to people like James, who because of home consolidations can't find the small setting he needs.

Anne McCaffrey: Many people do better in a smaller setting. If we can achieve that, we try to, but it is getting more difficult.

Emyle Watkins: Not to mention if you're newly in need of a group home, the state-run placement system is struggling due to the closures. Agencies like People Inc are asking the state for a 3.2% cost of living adjustment, or COLA, and a $4,000 per employee wage enhancement in this year's budget.

Anne McCaffrey: Right now, the governor's budget, was she put in a 1.5% with no wage enhancement. The Senate and the Assembly have come back with a 3.2%, but they put in some additional restrictions there.

Emyle Watkins: McCaffrey says what they're asking for is in line with the consumer price index and inflation. It's meant to just buy them more time to fix this system and increase wages long term. And while the state decides the fate of a system that was meant to allow people like James to live in the community rather than a hospital or institution, James is left in limbo, and his family worries for his future,

Barbara Catalano: Trying to stick my son into anything and think he's going to survive, he's not going to survive. When he went into the system, this was supposed to be for life. And this is supposed to be his life. And I was supposed to know that when I die this will continue.

Barbara Catalano: And they need to look at this and figure it out, just like they did years ago, they figured it out. They need to do something here, because we're in a crisis and they put us in this crisis.

Emyle Watkins: To listen to the Disabilities Beat segment on demand, view a transcript, and learn more about the care crisis, visit our website at wbfo.org. I'm Emyle Watkins. Thanks for listening.

Emyle Watkins is an investigative journalist covering disability for WBFO.