Amanda Hayes is out for lunch with her parents at the Burger King in Canton. She’s 37 years old with curly brown hair tied back in a bun and bright
turquoise sneakers.
Her Dad, Ed, wheels her chair to the table. Amanda laughs as her mom, Carrie, helps her take a sip of chocolate milkshake.
“Oh! What’s so funny!" laughs Ed. "Hey! Down the hatch!" jokes Carrie. "Oh, she's savoring every ounce of it! She'll put milk in her mouth and hold it there, just savoring it," says Ed.
Amanda has cerebral palsy and can’t feed herself or talk. Carrie and Ed love the noises Amanda makes. They call them her "happy notes," but worry she’s making less of them lately.
"This is probably the first time she’s giggled in two days. The depression. We walked in. She had her head down. She was shaking," says Ed.
Amanda lives in a home with ten people and requires 24-hour care. Outings like this are rare. Almost all activities for the folks in Amanda’s home have stopped. There aren’t enough workers to help residents leave the house except for doctors' appointments.
Love the work, but can't pay rent
Agencies throughout the state have been operating with “less than skeleton crews” as one worker Monica talked to described it.
"Right now, we have a 25 percent vacancy rate in St. Lawrence County. Our vacancy rate in Jefferson has averaged been probably between 25 and 30 percent, but the last couple of years it's been as high as 40-45%, especially with COVID. We've come a long way, but we still have a ways to go," said Howie Ganter, executive director of the ARC Jefferson-St. Lawrence, which provides services and homes for people with developmental disabilities.
Ganter says these agencies have their hands tied. They can only pay what the state allows them to pay, which varies, but hovers around $15 an hour for non-profits and around $18 for state-run homes.
"These have become minimum wage jobs and these are not minimum wage jobs," said Rhonda Frederick, executive director of People Inc., which runs group homes and services in Buffalo.
Frederick has worked in the field for 40 years and says she and other advocates were frustrated throughout the Cuomo Administration, which delayed a cost of living increase for people who work in group homes for ten years.
"I don't know what the last administration was thinking, but certainly, we got into this workforce crisis because of that. There’s no doubt in my mind. We have wonderful people that leave this field, that want to work in this field, but can’t pay their rent or put food on the table for their family," said Frederick.
"It feels like going backwards"
This worker shortage has real-life impacts on people with developmental disabilities. Agencies have to cut things like field trips and arts programs.
More importantly though, they’ve had to consolidate group homes, resulting in residences with seven or up to fourteen people in them. Residents are being forced to move.
This is touching a really painful nerve for families of people with disabilities.
In the back of a lot of people's minds is one place: Willowbrook.
Willowbrook was a state-run school on Staten Island that packed hundreds of developmentally and physically disabled children into warehouse-like conditions. Then-Senator Robert F. Kennedy described it as a "snake pit."
The brutality reached national attention in a 1972 documentary by journalist Geraldo Rivera.
Willowbrook didn’t close until 1987, during many of these workers' and families' lifetimes, so the realities of it feel too close.
"We use the Geraldo Rivera expose on Willowbrook; we show it to new employees to show them, this is not an acceptable way to treat human beings," said Frederick.
Decades of law and policy changes put Willowbrook in the past and made group homes closer to the kind of living we all want. However, with the worker shortage forcing consolidations, there’s a real fear of sliding backwards.
Family home to nursing home
Amanda Hayes had been living in a home with three other young women for 17 years on Cherry Street in Potsdam, the village she’d lived in for her entire life.
"Like every home, it wasn’t perfect, but we have a lot of fun there and a lot of great memories. We had family dinners and everyone would bring a dish and cook together. It was like walking into a home," said Carrie Hayes.
But in October, Cherry Street was forced to close due to staffing shortages. Throughout New York, almost 60 state-run homes have closed, plus non-profit ones, too. Amanda and her three friends were all placed in different facilities.
Carrie talks through tears as she shares how hard it was to know how Amanda was handling the transition.
"What was she thinking? I was afraid for her. I didn’t want her to think – I don’t know. 'Was she safe? Did she do something wrong? Why did everything leave her?' It was horrifying. It just has not been easy, at all."
Now, Amanda lives in a facility 20 miles away in rural Rensselaer Falls with about ten other people. It’s like going from a family home to a nursing home, as one parent put it.
"Those decisions are not made lightly and it is out of an abundance of safety that they made those decisions," said Frederick.
"When I started in the field, we did 10, 12 [people in a house], so we spent years in those same houses trying to downsize them. I absolutely hate seeing it going the other way.
"You get these huge houses and it’s going back towards an institutional setting, " said one parent.
What's more is that the worker shortage is forcing agencies like Frederick's People Inc. and Ganter's ARC of Jefferson-St. Lawrence to turn away people looking to live in a group home because they don't have the staff to run them.
A financial commitment from the government
For agencies and parents, the solution is clear: increase wages for direct support professionals.
Ganter and Frederick are pleased that Governor Kathy Hochul proposed a 5.4% wage increase, plus a $3,000 bonus, but say there needs to be more of a commitment from the state and federal governments.
"It will have to be a combination of state resources and federal, but to get our staff up to a living wage, there has to be federal involvement," said Ganter.
In the meantime, Carrie and Ed Hayes are scared of what they’re seeing in Amanda’s larger group home.
"They’re changed, they’re fed, and they’re brought to the living room to watch TV. Then they’re changed, they’re fed and they’re brought to the living room to watch TV. That's all I see happen," said Carrie.
As Ed described it to Carrie, "I feel like our daughter is living on a farm. She’s fed and then put back out to pasture."
"When Ed said this, it broke my heart," said Carrie.
For now, the Hayes are taking matters into their own hands: they’re buying a van that can fit Amanda's wheelchair to get her out more. They also want to build her a home on their property, so her siblings can look after her someday.
