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WNYers testify on caregiver shortage impacting disability community: 'Real unmet needs'

BJ Stasio and Jeff Paterson
Sen. John Mannion
Western New Yorkers BJ Stasio (l) and Jeff Paterson testified in Albany at a state Senate Standing Committee on Disabilities public hearing Sept. 14. Stasio serves as the president of the Self-Advocacy Association of New York State, while Paterson represented the Developmental Disabilities Alliance of Western New York.

On Tuesday, Western New Yorkers were among those testifying at an over four-hour hearing on a staffing crisis that is causing New Yorkers with disabilities to be without basic assistance, such as using the bathroom or going to bed.

"We are here today about the ramifications of decades of inadequate investments in the service delivery system for New Yorkers with intellectual or developmental disabilities," said state Sen. John Mannion.

Mannion, who chairs the Senate Committee on Disabilities, led the hearing, which discussed how a shortage of direct support professionals is causing grave issues for New Yorkers with disabilities. DSPs provide essential assistance to people with disabilities, including personal care, traveling within the community and taking medication, among other things.

Several Western New Yorkers testified at this hearing, both in writing and in-person. Among them was BJ Stasio, president of the Self-Advocacy Association of New York State and an employee of the state Office for People With Developmental Disabilities. 

He said he’s spent two years sleeping in his wheelchair due to the lack of staff to help him in the morning and that among people he’s talked to, they’re also struggling due to constant changes in, or an absence of, staff.

"People are actually going without staff support at times and they have real unmet needs that diminish their quality of life and sense of personal dignity," Stasio said. "As far as personal dignity goes, it's very difficult for me, the self-advocate that I am, to ask a random stranger in my building for help with my bathroom needs when there's nobody there. But I have to do it to have that good life that OPWDD promises."

New Yorkers with disabilities rely on the care providers, but according to many who testified, many people do not enter the field or leave it early because of poor pay. In Western New York, 3,000 DSP positions are vacant, which is equal to over 4 million hours a year that people with disabilities could be served, according to the Developmental Disabilities Alliance of Western New York.

Sen. Shelley Mayer: "Does the Department of Health have any response to you? You're basically out there without the services to which you are entitled."

BJ Stasio: "Well, the usual responses will renew your services. But when you find people, tell us — and that's ridiculous, because how am I going to sit there and say, 'come to work for me and only get $12.90 an hour,' I would never do that to anybody because human beings have a lot more value to me than $12.90 an hour."

Mayer: "Agreed, thank you very much."

Jeff Paterson, representing the Developmental Disabilities Alliance of Western New York, also testified at the hearing on behalf of the 40 not-for-profit agencies DDAWNY encompasses.

"This is the human toll of poor public policy. And make no mistake, while the pandemic has made it worse, it began long before COVID, as we've established today, and it will not be miraculously resolved whenever the pandemic mercifully ends," Paterson said.

He added agencies need funding, and not just now during the pandemic, but in a sustainable way heading into the future. 

"So thanks to the American Rescue Plan, New York State has more than $500 million. That's great, but that American Rescue Plan was signed into law on March 11. Those revenues were included in the state budget passed April 7, and we're sitting here on Sept. 14 and provider agencies still don't know what we're getting or how it can be used," he said. "So we've gone into our own thin cash reserves, to pay emergency bonuses and raises to keep the system from totally collapsing, with no support from the state."

To end his testimony, he stressed that agencies are at the end of their ropes. 

"There is a limit to our resilience. We have no more rabbits, we have no more hats to pull rabbits out of. We need help. Our staff needs help, the people we support need help, their families need help. And I would just end by saying that at the onset of the pandemic, we heard DSPs called — as we've heard — heroes and essential workers. How soon we forget. Let's not forget any longer," Paterson said.

Mannion is now calling on New York State to commit $550 million within the state budget towards the DSP workforce crisis. 

Emyle Watkins is an investigative journalist covering disability for WBFO.