On a frosty spring day, Julie Kolb, a registered nurse, gives a tour of the group home where she works.
"So similar to the living room, these are our six single bedrooms. As you'll walk by, you'll notice everybody was able to pick out their wall color, pick out what it is that they want up on the wall," Kolb says, as she moves through the house.
The residents are all people with disabilities who have the highest level of medical support needs and use a ventilator. Everywhere you turn, there’s a personal touch, an item that reflects the personalities of the people who live here, like Buffalo Bills collectables and a fish tank. The staff talk about a recent outing to see a play, and family members who built a raised garden last spring.
“They do get to have, you know, a traditional home environment, and be able to go into the community," Kolb adds.
There was a time in the United States where homes like this didn’t exist and people with disabilities were institutionalized. While deinstitutionalization began in the 1960s, it wasn’t until 1999 that the Supreme Court’s Olmstead decision affirmed disabled peoples’ right to live in the setting most integrated into their community, such as a group home like this one rather than a hospital.
However, spots in homes like this one are still hard to come by.
“There's really no other place for individuals with the needs that these individuals have to live sometimes," Kolb says. "A lot of times, they're in long stays in hospitals, or they live in nursing homes.”
And people who have found placement in group homes or are given support workers to live independently, face a fear of re-institutionalization due to underfunding by New York state.
“I had an aide that I was really close to and she had to leave because she had children, and she had to get more money to have childcare," said Christie Glenn, who lives in Rochester.
Glenn and her colleague Israel Cruz both live with disabilities and work as advocacy support professionals with People Inc., advocating for the rights of people with disabilities and teaching self-advocacy to People Inc. clients.
Glenn lives on her own and receives the help of a Direct Support Professional, or DSP. She worries that without the assistance, she would have to move into assisted living. Cruz wants to move out of his family’s house but is already struggling to find home care workers to assist him there. Home care workers are facing a similar workforce crisis due to state funding.
“I'm concerned that one day if I choose to move independently, which I hope is coming down the pipe soon," Cruz said. "I'm gonna run into a situation like Christie has, or many other people that I know, that can't get aides to come in, because they're not getting paid what they should be.”
DSPs help people with disabilities with tasks of independent living, such as cooking, cleaning, getting dressed, and going out of their homes. According to New York Disability Advocates, 85% of people with intellectual or developmental disabilities in New York receive support through a non-profit provider, such as People Inc.
Naylah Colon-Monte, a DSP at a People Inc. group home in the northtowns, during her high school graduation.
However, just like the state-run group homes, nonprofits rely on state funding to pay workers. Western New York has the lowest statewide average starting wage for DSPs at $15.84.
“We're competing with not only state entities, hospitals with similar fields of work, but with fast food," said Jordan Wollaber, the associate vice president for residential at People Inc., who operates this group home. "And unfortunately, like McDonald's, we can't make a better burger or increase the price of a Big Mac to be able to pay our workers.”
Disability service providers, like People Inc., are asking for an 8.5% cost of living increase this year for DSPs, something the assembly and senate appeared to support in their budget proposals, but the executive budget included at just 2.5%.
"In our house, I think we're losing two of our DSPs due to the pay," said Naylah Colon-Monte, a DSP at the group home. "It just doesn't match up to how much work they put in."
"We definitely had a few people who left for higher-paying jobs," said Gilbert Rodriguez, another DSP at the group home. Rodriquez and Colon-Monte said three coworkers left in the last month alone to do the same work somewhere else.
Beyond competing with fast food, where people are often paid more, non-profits also compete with state-run group homes for workers, where DSPs are paid a starting wage of $23 upstate. Rodriquez makes $16 an hour full-time, and Colon-Monte, a college student, makes $15 an hour part-time, but both say they couldn’t imagine doing anything else.
“I really genuinely care about them," Colon-Monte said. "I make sure everything I do, I do it with love and dignity. So I paint their toenails on my off time, and I make sure that the hair always looking good. I just really care about them. You think if it's your family member in here. So I do everything with lot of love.”
But for Rodriquez, who wants to start a family with his wife, he’s concerned that if wages don't improve, he won't be able to keep doing this full time.
“That's really hard-hitting because I have to provide more for my child in the future," Rodriguez said. "I won't leave here for anything, but it definitely will be harder to do."
"I would have to do a second job which would mean I have to go part-time here, probably," he added.
In Western New York, the average DSP vacancy rate is 15.70% and the turnover rate is 35.42%, the highest turnover rate in the state. With days left in the budget extension, agencies, DSPs, and self-advocates fear they’ll face another year of short staffing and turnover.
“I want to keep helping people," Rodriguez said when talking about why he decided to become a DSP. "I want to actually make a difference in someone's life.”
