February 20, 2025
The Boost
First posted Feb. 13, 2025
The intellectual and developmental disability (I/DD) community, already in crisis, is in free fall.
Chronic staffing and housing shortages, gruelingly long wait lists for services, underpaid caregivers leaving their jobs — this was the reality before the new federal administration stepped in intent on gutting safety nets. At the tip of the cost-cutting iceberg is Medicaid and a host of federal grants, plus the administration reportedly is eyeing Section 504 of the Rehabilitation Act, which prohibits programs that receive federal funding to discriminate against people with disabilities.
Their future is more uncertain than ever.
Enter Sen. Patricia Fahy, the new chair of the New York State Senate’s Disabilities Committee. She and the other members are facing a battle for dollars greatly exacerbated by the potential gutting of Medicaid and other federal programs.
“If we lose Medicaid funding we are in epic levels of crisis,” Fahy tells The Boost.
Prior to her election to the State Senate in 2024, Fahy was a New York State Assemblymember, elected in 2012. Her bio calls her a “leading advocate for job creation, environmental conservation, and quality education,” and notes that she has been the prime sponsor of over 200 bills since her election to the State Legislature, more than 75 of which have been signed into law.
The Senator, who freely admits she’s on a learning curve when it comes to disability issues, seems determined to ask the hard questions and to get answers. She spoke with The Boost about the uphill battle for a 7.8% COLA for Direct Support Professionals (DSPs), one of her priorities; dryly noted that calling the Consumer Directed Personal Assistance Program transition a mess was an “understatement”; and says she’ll do “whatever it takes” to get people with disabilities employed. (You’ll find her priorities here.)
I hope you enjoy the interview, which has been edited for length and clarity. — Roberta Bernstein, Editor, The Boost
THE BOOST: I watched a good chunk of the Joint Legislative Public Hearing on Mental Hygiene [held Feb. 5, shortly before this interview]. It was good to see you drill down into the issues affecting the developmental disability community. There’s a lot going on. My first question is an easy one: Are you ready for a vacation?
SEN. PATRICIA FAHY [Laughs]: It’s my 13th budget and I have to keep reminding myself that it’s February, which to me is the hardest month. But the only way I really learn is by listening to the advocates.
Have you had any prior experience with this community?
I come from a very large extended family and my cousin’s son, who was born a day after my daughter, Eileen, has Down syndrome. But my son is probably where I learned the most. [Fahy’s son, Brendan Fahy Bequette, died at the age of 24 in 2022 of a rare cancer.] He fought cancer for 20 months and seeing a healthy son skinny in a wheelchair is pretty humbling. [Tears up] It’s brutal.
But I like to look at the glass as half full. We’ve come far on so many issues. I remember back to when a friend was very emotional because her brother [with developmental disabilities] was institutionalized whereas today he would not have been.
That’s a good jumping off point because the institutionalization of people with I/DD is on people’s minds again. Group homes are closing, there’s a critical housing shortage, DSPs don’t make a living wage and are leaving the sector in droves. Your list of priorities includes a 7.8% COLA for DSPs. Governor Hochul doesn’t seem interested in that number. Do you have allies on the committee who will fight for this? What are next steps?
I’m going to be fair here. The governor takes the heat, but I think we all need to own this. She has to hold the line on a budget that’s very difficult. And members are asking for fifty other things, too.
This is an annual fight. Pay has not kept up. We all need to keep prioritizing getting pay parity, none of it is getting easier, the 7.8% is not going to be easy. I do want to know how much of that $850M is going directly to the DSPs. [OPWDD recently announced the release of updated reimbursement rates for licensed non-profit residential and day service providers, a process known as rate rebasing, plus more than $400M in “new resources” for providers. At the hearing, OPWDD Acting Commissioner Willow Baer assured Fahy that she’s heard from some providers that they’re increasing wages and, in response, the Senator asked for a list of which ones.]
We all need to advocate here, and provider agencies have gotten so much better organized and disciplined about organizing on pay issues. But it comes down to the cost.
That doesn’t leave me feeling very positive about DSPs getting a living wage.
I’m sorry, I’m blunt as they come.
But what are the next steps to help get that needed pay boost?
Make no mistake, providers have become a force. And we’ll continue to advocate.
That 7.8% represents a huge number in a budget, and we’re looking at a president [Donald Trump] who may eliminate the Department of Education, which could [gut assistance] for all kinds of disabilities-related education, among other things.
Right, it’s not exactly a healthy environment. And hanging over all of this is Medicaid on the chopping block.
If we lose Medicaid funding we are in an epic level of crisis. I want to be optimistic that there’s a lot of support [for the 7.8% COLA]. Have we ever achieved the number advocates have asked for? I don’t think so. Have we made inroads in the last few years? Yes. We have a decent recent track record for the COLA, 4% I think in 2023-24, 2.8% for 2024-25, it’s just never been 7.8%
Those last two percentages didn’t keep up with inflation.
No, of course not.
So let’s talk about your priority to create a Human Services Wage Commission and how this ties in.
It’s a bill that I’ve inherited [Senate Bill S4675]. My understanding is — and I still have a lot of work to do here — is that it’s a step back so we can say, “This is what’s needed.” And at times, and not always, these wage commissions have helped us to get the DOL [Department of Labor] to literally put in black and white “this is the history,” “this is where we’re at,” “this is the disparity.”
I’d like to switch over to Self Direction. At the joint hearing on Feb. 5, OPWDD Acting Commissioner Baer noted that there’s a consultant [Guidehouse] working with the agency to look at the model to possibly redefine it. Some families are concerned because a similar thing happened to the Consumer Directed Personal Assistance Program [CDPAP]. First, OPWDD contracted with Guidehouse and then it turned CDPAP upside down. I’m not saying there weren’t problems with the way CDPAP was being administered but, among other issues, the rollout has been a mess.
Understatement. Go ahead.
One issue that gets a little less coverage is that the Fiscal Intermediaries people work with, both in CDPAP and Self Direction, become a part of their care teams. When the system becomes impersonal you lose that essential support. They’re skilled professionals who have been doing this for a long time, and who have their own connections and supports. Any sense of where things are going for Self Direction?
I’ll put it on my radar screen. It’s interesting that there looks like there’s a parallel here. I definitely want to educate myself on Self Direction and I welcome hearing more about it.
As for CDPAP, we were briefed by PPL [LLC, the company that won the contract to administer the program] around the holidays and we heard some of the good things. We all recognized this program was in trouble and that it had exponential growth, and that many of those fiscal intermediaries were making a lot of money. So, there were a number of bad apples there that I’m afraid helped poison the whole program.
There was no argument [from most members] on the need to get this under control. But we thought right up until the last second that there were going to be regional intermediaries. It was a bit of a shock to a number of us that that there was one fiscal intermediary.
Do I think we have the perfect model? No one’s going to say that. Do I think we may see more changes? It’s a mess. Generally, I don’t want to start over. I’m being blunt. We’re not going back to 600 intermediaries. If there’s a delay it doesn’t mean there’s going to be a massive change, but a lot of people don’t have a huge appetite for a big fight.
There may be some attempts to loosen some of this up. The Health chair in the Senate does have a bill to propose some delays as well as some changes. [Sen. Gustavo Rivera, Senate Bill 1189, a modified version of the bill he introduced in 2024.] The Governor’s office is going to hold pretty firm right now. Politically, this is not earning her any warm and fuzzies.
Let’s talk about another one of your priorities, which is an increase to the Workers with Disabilities Tax Credit from $2,100 to $5,000, as well as adjusting application processes to expand the number of businesses hiring employees with disabilities.
I know there’s a mixed review on tax credit programs around the country. I’m a huge believer of the EITC [earned income tax credit] and am dusting off my efforts. [Several days after our interview, the Senator announced a proposal seeking to increase the credit’s value and broaden eligibility.] I want to do whatever it takes to get people employed. I’m well aware of employment rates and how difficult it is for people with disabilities to get jobs.
Last year, the U.S. Dept. of Labor proposed a rule to phase out certificates allowing payment of less than minimum wage to workers with disabilities, and there’s been a push to end the subminimum wage in New York. Have you had a chance to look at the issue?
I understand there has been a serious movement away from it and I’m supportive. I met with a few disability groups who want me to sign a bill to eliminate it and I said right now I can’t co-sponsor a bill until we have a commitment that those folks making subminimum wage at a job will have a job tomorrow.
I just want to end by noting something I’ve heard anecdotally, which is that some legislators have asked advocates and providers, to paraphrase, “Why should I listen to you? This population has no voting power.” How do you get people to support a community perceived as not having a lot of fire power?
Right. It’s why seniors generally get more in a budget then children — because seniors vote and children don’t.
I’m not here to make money. I’m here to get things done. It’s important, and why? It’s our humanity. But it’s not only the right thing to do, it’s also good for the economy.
Photo: Sen. Patricia Fahy being sworn in. (Credit: Courtesy of office of Sen. Patricia Fahy)