In February, after four months of collecting letters and campaigning for a meeting with Gov. Kathy Hochul’s office, activist BJ Stasio reached his goal. He brought the names of about 7,000 people and 400 personal testimonies, joined by several leaders of parent and agency organizations, to a visit with Hochul’s regional chief of staff.
“That was my way to do more to make sure that people's stories got heard," Stasio said. Stasio started the "RISE UP" campaign after sharing his own story in a New York State Senate hearing about the caregiving crisis.
Right now in New York State there is a massive need for both direct support professionals, also known as DSPs, and home health aides, who provide daily assistance to people with disabilities living independently in their communities or in group settings.
In 2021, approximately one in four positions in both fields were vacant, according to New York Disability Advocates and the Home Care Association of New York State. Stasio said the stories submitted illuminated the crisis.
“I've seen some of them personally, some of them vary from without my staff, I can't get to work, because I need my staff to help me get up to get ready for work, or I like to do this, or I like to go to coffee twice a week, I can't go for coffee twice a week, because I don't have the support that I need," Stasio said.
The meeting itself was seen as a major change from what leaders in the disability community and the disability services industry have seen in past years. Rhonda Frederick is president of both People Inc and the Developmental Disabilities Alliance of Western New York (DDAWNY).
“Up until when Andrew Cuomo came in, we had had as organizations and as the field, we had really grown," Frederick said, adding that there was a variety of programs and a cost of living adjustment at the time. "And then it all kind of stopped. And it was almost as if, you know, like a wall came down. And that was the end of talking to the governor's office.”
And Stasio echos this frustration, describing how people with disabilities have been neglected by the previous administration.
“The previous governor always wanted to be our hero, when we, the people he was supposed to support and protect and keep safe and keep healthy, called him out. So he was only our hero when we made him look bad," Stasio said.
And for some of the agency leaders, including Empower CEO Jeff Paterson, this was their second time talking with Hochul’s administration. The first time was ahead of the budget.
“We were very pleasantly surprised that with Gov. Hochul’s first budget, much of what we asked for was there. And we really felt that we were heard," said Paterson.
While they feel heard by the executive budget, Paterson acknowledges that the disability services system is going to need a lot more work.
"Frankly, it took 10 years to push this system to the brink of disaster, by deliberate policy choices that were made under the previous administration. It's going to take this governor more than a year to fix all of that," Paterson said.
And to get there, Stasio and the agency and parent community leaders emphasized that the financial situation of the disability services system needs to change.
DSPs and other workers are funded through the state. Currently, wages are typically below the living wage, and the median wage for home health aids is often less than what they could make in fast food. The agencies would like to see a 5.4 percent cost of living increase stay in the budget, as well as a proposed personal income tax credit for workers.
For Stasio, he asked the Governor’s office to consider creating a Workforce Task Force for Retention and Recruitment, led by people with disabilities, to lead work on alleviating this crisis.
“Who better to recruit direct support professionals and those to work with, than those who will be receiving the services? You never see that in an agency or OPWDD, for that matter. It's always somebody who's a staff person talking about what they're going to do for us, to help us lead that richer life. But I think what would be more impactful to bring the human touch back to human services is actually putting a face to what the story of the person could be," Stasio said.
There was a resounding message that this is just the start of their work advocating to Hochul’s administration.
“The governor is listening, but we're far from done," Stasio said.
