In an exclusive hour-long interview for the Disabilities Beat, BTPM Disability Reporter Emyle Watkins interviews Willow Baer, the newly-confirmed commissioner for the New York State Office for People with Developmental Disabilities (OPWDD).
Baer, who has served as acting commissioner for almost a year, shares her background, goals for the agency, and recent budget investments in disability services. Watkins and Baer discuss the state's new $25 million funding for regional disability health clinics and OPWDD's focus on expanding employment programs.
Baer addresses concerns over potential federal Medicaid cuts and ongoing efforts to professionalize and raise wages for the state’s direct support workforce. Watkins also questions Baer on ethical considerations with the state's aging former institution sites and changes to mental health policy that may impact people with developmental and intellectual disabilities.
TRANSCRIPT
This is a rush transcript written by an external contractor and may be updated over time to be more accurate.
Emyle Watkins: Thank you, Willow, for joining me here at BTPM. We're so excited to have you in the studio to talk about the Office of People with Developmental Disabilities and all the programs you have and all of the exciting funding changes in the budget that are going to allow for some really cool new programs. And to start, I also want to congratulate you on officially being appointed commissioner.
Willow Baer: Thank you.
Emyle Watkins: I was wondering if you could just tell our audience a little bit about you, who you are, how you came into working with people with disabilities.
Willow Baer: Sure. So I have grown up most of my professional career in the IDD service industry. I came to OPWDD as an attorney. I'm an attorney by trade, so a recovering attorney I've been describing it, overseeing a lot of the service areas, program areas. I have a sister-in-law with a developmental disability, so I have a personal connection to the service system also. I left OPWDD for a period of time and went to be the deputy commissioner of the Office of Children and Family Services, and then served twice as assistant counsel to Governor Kathy Hochul overseeing legislation and policy development for all of the human service and mental hygiene industries and nonprofits.
Was recruited back to OPWDD as the executive deputy commissioner about a year and a half ago. It was like coming home. We have the greatest leadership team, the greatest staff, the greatest nonprofit network. I was really excited to return, but being the commissioner was definitely not what I foresaw for myself. It wasn't on my radar at all. When our last commissioner decided that for her life it was time for her to move on, I was asked to step up. And I originally said, no, it's not really what I wanted to do. I am so glad that I was wrong. I have loved every minute of being in this role, and like you said, I was just officially confirmed by the Senate about a week ago, so I'm here to stay.
Emyle Watkins: That's great to hear. And I'm wondering, I love to ask people this, was there a pivotal moment where you found yourself working in disability? Because I know for me personally, I saw a documentary about the history of people with disabilities, and as a disabled person, I was like, oh, maybe I could write about disability, and some people find themselves in a job or meeting someone. Was there a pivotal moment for you?
Willow Baer: I don't know that there was one pivotal moment, but for me it's working with the self-advocates, people that identify as having a developmental disability that we have the privilege of working with and serving throughout the state. When I am able to get to know some of the men and women that we serve through OPWDD, it really makes everything we do so fulfilling, so worth it.
When I came in as commissioner, I hired a small team of self-advocates to work for the state, to work for OPWDD to advise me about what we as a system were getting wrong, what we were getting right and where we could improve communication and policy development, and it is just so meaningful to see how much impact we can have on people's lives to make them much more fulfilling and enriched and meaningful. So for me, that's not a pivotal moment, but my pivotal connection.
Emyle Watkins: That's really cool. And you mentioned your leadership team. Something that stood out to me as I was scrolling through OPWDD's website was just how much of your leadership team is women. I was wondering if you could talk a little bit about that. I think a lot of times when we think about government, when we think about government agencies, and especially right now when we turn on the TV, we see a lot of men. So I was wondering if you could talk a little bit about what that's like having a leadership team and so many people in OPWDD being women, and a lot of young women in leadership.
Willow Baer: That's a great point that I hadn't thought about. We have had a very consistent leadership team. We have more longevity in this state agency than any agency that I have ever worked with because people tend to come to the system with some connection or passion for the work. And I think, not to overgeneralize, but that tends to be women. Our direct care workforce is largely women. That's who takes care of the country, and so I'm very proud to have a very female-heavy and overall very young leadership team at OPWDD. So thank you for pointing that out.
Emyle Watkins: Yeah, yeah. And that's immediately what I thought too is we know that this workforce that OPWDD hires or funds is largely women, largely people of color, largely immigrants, and so I thought it was interesting to see that also reflected in your leadership team.
Willow Baer: It's something that I can't really take credit for. Like I said, most of that team has been in place since I took over this role, but I am incredibly proud to work with them.
Emyle Watkins: I know since becoming acting commissioner there's been a lot of changes, like you mentioned in OPWDD, especially creating the advocacy services office, the ombuds program, and doing a plain language review of your agency. Can you talk a little bit about those programs and why you felt they were important?
Willow Baer: Sure. I think one of the things that surprised me when I came back to the agency into a different role, so not as an attorney anymore, but really needing to own how we interacted with the public, something that surprised me was how well we thought we were communicating and meeting the needs of different communities when we really weren't. We were reaching the same group of families, the same group of self-advocates over and over again. And so we have done a tremendous amount of work in the last few years to make sure that we are reaching all of the communities within the disabilities community, making sure that we're translating materials, that we're holding public forums in other languages, that we're working with community-based partners to really lean into their relationships with different communities and lean into that trust that they've already built.
I think there's a lot of marginalized and double marginalized communities that are just not as trusting of state government, and so we've done a lot of work to bridge those gaps to make sure that we're really equitably reaching New Yorkers that have disabilities. So we've done a tremendous amount of work there, and we're really excited about continuing those partnerships.
Emyle Watkins: And something that strikes me too is I think people, especially since I've started writing about disability, people don't know just how many services exist for people with disabilities now. I mean, I was even watching Call the Midwife the other day and they were just talking about, obviously that takes place in London, but they were talking about, at that time in the sixties, people with disabilities didn't have a right to education. That was true I think in a lot of places in the world. And nowadays, we have so many great services, but I think people have trouble knowing what's out there or connecting with them, so can you talk a little bit about how you communicate and reach people at the first step of possibly needing services and who would qualify under OPWDD?
Willow Baer: Sure. So to qualify for OPWDD services, you need to have an intellectual or developmental disability, so that's things like Down Syndrome, autism, Prader-Willi Syndrome, cerebral palsy, that impacts your ability to engage in daily activities. In order to qualify, you have to have a certain level of adaptive deficits is the outdated language that we still use, and it has to have started before you're age 22 and expected to last for a lifetime.
So at what we call our "front door", which I'm using air quotes, it's our regional offices throughout the state, although I am based out of Albany, we have over a thousand locations throughout the state. So we have all kinds of ways that people can use a computer or a phone or show in person to learn more about what we offer as a service system. We have thousands of care managers that are really that connection between a person and the service system. We have front door materials now available in just about any language that you could need. So to really make sure that people know how and where to get connected to services is something that we've been trying to really strengthen.
Emyle Watkins: And I guess what are some of the challenges about reaching this population? I know obviously one thing you've worked on is plain language, making these resources easier to understand and not complicated language. And I imagine you try and reach a lot of families, but also if we're talking up to age 22, could we be talking someone who's a young adult or someone who maybe in adulthood finds out that they have spina bifida because there are forms of these disabilities that aren't discovered till later in life?
Willow Baer: Yeah, we have people that establish eligibility at all different ages. You might have someone who's been living at home their entire life and didn't identify a need for a service because were living with their parents and relatively well taken care of. Maybe they were okay in the education system until they reached a certain age. We definitely are seeing more and more children entering the system. About 75% of our applications for eligibility and enrollment every month are under the age of 20 and skewing even younger. There's certainly other reasons why someone might not come to the service system right away. There are certain stigmas in certain communities or just a lack of awareness that were there and what we can offer, so trying to do a better job across the board.
And then once you are able to establish eligibility with us, there is just a vast spectrum of services available all the way on the far end of the spectrum to the most intensive 24-hour-a-day residential services with clinical supports for people who really are medically or behaviorally complex and need that level of day-to-day engagement. All the way on the other end of the spectrum, people who live on their own in the community, maybe they receive job coaching once in a while, maybe they receive a housing subsidy to help pay their rent, things like that. So a pretty broad array.
Emyle Watkins: Could you talk about a couple of those programs, maybe the ones that you see utilized the most or even the ones maybe utilized the least? Are there some that we're seeing less or more of a need for in this moment?
Willow Baer: I think historically we have been a very institutional environment. So talking about the timeline in Call the Midwife, which is a fantastic show, it was only 50 years ago that we closed Willowbrook State School, right? So if you are related at all to disability community or live in New York State, Willowbrook conjures a very clear image to you. And it was only 50 years ago that we moved everybody out of a very deplorable institutional conditions and moved them out into community-based homes.
Since that time, we have certainly evolved, but we have historically been that group home setting type of a service system. That remains the most expensive, the most utilized service in New York State. And in fact, New York State is the largest residential service provider for the developmental disabilities population of any state in the nation. So that is by far the biggest service.
What we are really focusing on doing better now is moving people the other way on the continuum, pushing people to live on their own in the community to receive employment supports. We have a very low rate of people with disabilities being employed in New York State. It's not unique to New York. I think it's low across the United States. It's particularly low in New York. And last year, Governor Kathy Hochul signed Executive 40 to be an employment-first state. Meaning that having meaningful competitive, wage-earning employment should be the very first choice for anyone that wants it in New York State, and that definitely includes with disabilities. And so one of the lowest used services right now are all of those employment services that we really are trying to build up and move people into now so that people can just have much more meaningful day-to-day lives.
Emyle Watkins: What are some of those challenges with the employment services? Because I know it's not just your agency that provides them. We've also got ACCES-VR. We have through Medicaid, the Medicaid buy-in for working disabled people, which allows you to receive Medicaid if you continue to work. There's those ticket to work programs, and a lot of them are administered through the local social services agencies. So what are some of the challenges of connecting people across agencies or services?
Willow Baer: So I can't speak to any of those programs that aren't mine. I do think that ACCES-VR is one that's done a really good job in this space, and some of the other ones that you mentioned will make a big difference for people with different levels and types of disabilities. In our system, I think we're just late to the game in recognizing that people with developmental disabilities want to be employed, can be employed, make really good employees.
We, for the last several years, have really worked on educating the general public, educating businesses, business councils about why someone with a developmental disability can make a really good employee, can be very reliable, can really raise morale in the workplace, can add to that community. Sometimes there's a little bit of support that's needed and a little bit of understanding and training, and so those are the types of things with employment first we're trying to identify the needs that would help the business community so we can make sure that we are being a partner in that way to make sure that people can get employment and then stay employed.
Emyle Watkins: And if I recall correctly, the budget also includes some funding to help agencies and organizations, to incentivize them to hire more people with disabilities. Am I correct in recalling that?
Willow Baer: In this year's enacted budget, there was an expansion of the disability tax credit, so certain employers that employ a certain percentage of people with disabilities have access to a tax credit, and people who have an identified disability and work also have a similar version of a tax credit on their side. So yes, money was put in to expand and extend those provisions as well.
Emyle Watkins: And I understand if you can't speak to this, but I know one of the challenges among employment with people with disabilities is that there's a law from the 1940s that allows certain employers to get what's called a 14(c) waiver. It allows some employers to hire people with disabilities at a subminimum wage, so less than the minimum wage. And I know it's caused issues where people with intellectual and developmental disabilities will start working through one of these entry to work programs, they will start working through one of these 14(c) waiver programs, and then they get their paycheck and they realize that they've not made the money they thought they were going to make.
And I think in some ways that story has been put in the media as this like, wow, they didn't know. But I think the disability community has known that these issues have existed. Again, we've had this law since the forties. Do you see New York state making strides towards moving away from incentive programs like that and more towards these meaningful incentive programs that give tax credits or try and incentivize, but allow people with disabilities to have the same pay and benefits as a non-disabled employee?
Willow Baer: I think New York State is making a lot of progress in that space. There are not that many people with disabilities in New York state working under the 14(c) licensure anymore. There certainly still are programs like that, and there have been concerted efforts to phase those out, and there are not many New Yorkers left working under those waivers. The commitment to being employment-first is not just a commitment. There's been money put in the budget behind it to make sure that we are creating paths for people to maintain employment and not just fall off.
14(c) is a very controversial topic within the disability community. Not because the reason you identified as people not knowing, but because there are a certain amount of people or family members who worry that without something like that, their loved one would just not have a job at all, and so what we're focused on in New York State is creating a path for that subsect of the population that might not otherwise have found themselves employed and what we can do to help create a path for them.
Emyle Watkins: I'm wondering as someone who leads an agency that also hires a lot of people with disabilities, I know people with disabilities who work very high level within your agency all the way down to people who work at front door programs and they have IDD themselves. What would you say to another employer who is timid about hiring people with disabilities? Because I see how people with disabilities work within your agency and are given a lot of discretion and responsibility, as they should be. I am also disabled and feel that on a personal level, but I guess I'm wondering what would you say to a non-disabled employer who is questioning the role of people with disabilities within their work?
Willow Baer: We do try to walk the walk, walk the talk, whatever the right analogy is there, by finding pathways for employment within even just our agency. I would say I think what I said before, which is what we try to communicate to businesses and business councils about just the richness in diversity that someone with a developmental disability can add to your workplace. We've seen and heard from business leaders that hire neurodiverse workforce tell us how popular that employee has made their business place because now you have them interacting with customers and developing relationships within the community and raising morale within the workplace itself. They show up on time. They work there a long time. Just like anybody else, you can have a bad employee who has a developmental disability as well, but there is just such an untapped richness there that I'm excited to see grow over the next couple of years as we really put an emphasis on employment.
Emyle Watkins: That's great to hear. And I know in this year's budget, one of the really interesting points I noticed was $25 million to go towards regional disability health clinics. Can you talk a little bit about those?
Willow Baer: Yeah, I'd love to. I'm really excited about it. So the regional disability health clinic proposal, it's a $25 million investment, as you noted, which would be given out by my office, by OPWDD in the form of grants to Article 16 and Article 28 clinics. So those are healthcare clinics licensed either under the Department of Health, or licensed by us, to provide health services to people with developmental disabilities.
So we will issue a formal process and those clinic providers will have to tell us how they could expand access to healthcare specifically for people with developmental disabilities in their part of the state with some capital dollars. So that could be to expand a waiting room, to build a sensory room, to add an exam room, to buy accessible equipment. I have gone to visit some of these health providers who have fantastic facilities, Hoyer lifts, the ceiling tracking, the accessible parking, and what we see is that people with disabilities are coming from hours away to access healthcare at these locations. And that's not possible for everybody, and it shouldn't be. You shouldn't have to go three hours to get basic preventative healthcare just because that's the only place that has the accessible x-ray machine. So with the $25 million, the idea is that we would expand the ability to do that in existing locations throughout the state.
Emyle Watkins: I guess I'm wondering what are some of the areas in the state that you see the largest gap in terms of this? I know even in Buffalo, I have a family member that needed, due to his disability, a MRI, but he needed to be sedated during it, and he had to go to Rochester to receive that, which surprised me because you would think sedation would be available in Buffalo, even just small things like that. So I guess I'm wondering are we looking mainly at rural areas, is it even in urban areas, where are these gaps?
Willow Baer: The healthcare desert question for the developmental disabilities population is different because there are basic health deserts, and then there are health deserts for our population, which is essentially the State of New York. So Rochester has very strong capabilities. There's providers in the Albany area that are very strong, but overall it is not just limited to rural populations. Finding a doctor that will take the time to serve someone with developmental disability is hard. Finding someone that has that specialized expertise or interest, finding someone that takes Medicaid, those are all very hard to come by, particularly when you're someone who might need a longer appointment time or more patients or communication assistance, room for your staff potentially. It's rough. So I don't know that there's geographically a part of the state, but what we're looking for is providers to tell us how they can expand access. So that's geographically.
We know that dental services are a type of service that are almost impossible for this population to access. Preventative women's health is very hard to come by. I've had women tell me that they travel for hours or go to an emergency room just to get their annual pap smear because that's the only place that they can access that, and that's just not acceptable. So it's types of services more than it's places where they access them, if that makes sense.
Emyle Watkins: Could some of this funding also be used towards targeting that provider bias? Because I know that, I recall there was possibly a New York Times article talking about the provider bias that exists towards people with disabilities. There are some providers that just do not want to see people with disabilities. And even for me, appearing to be non-disabled, I've even had the experience of a provider seeing me and then telling me not to come back because they didn't want to treat someone with my rare disability and that they couldn't help me, and that's happened more than once. And having the privilege of looking non-disabled serves me in a lot of ways, but I imagine for people with more severe or visible disabilities, that has to be a huge challenge going in those rooms. So could that funding also be used to alleviate that provider bias to provide trainings, that kind of thing?
Willow Baer: Yeah, I'm sorry that you've had that experience, and it absolutely happens to people every day with much more apparent disabilities. $25 million doesn't solve the problem. So the idea there is additional capital investments to expand access, but we absolutely need to lean on providers to train one another, for healthcare providers to take it upon themselves to educate other healthcare providers. Part of what we've envisioned with this investment is that providers that receive funding to expand access would also be required to develop relationships within the community with other healthcare providers to either share access to whatever it is we're purchasing for them, or to at least spread the knowledge, share that education and that expertise because that's the only way we get there. We need better partnerships in the health industry itself.
Emyle Watkins: And I know that there's also a significant investment going into the OPWDD Institute for basic research in developmental disability, about $75 million. Tell me a little bit about the research you do and why that funding right now especially is important as we look at funding cuts to more federal agencies.
Willow Baer: The timing was a coincidence, but incredible. So the Institute for Basic Research and Developmental Disabilities is a research facility that we operate in Staten Island. It's been there since 1968. This is the largest investment we've made since that time. That investment will be used not just to modernize the laboratory facilities and research equipment, but also to build a genomics core lab so that we can offer genetic testing to more people throughout the state of New York. We do a little bit of it there now.
And what that is mainly used for is for people that are maybe undiagnosed late into their adulthood with a specific type of developmental disability, can receive that genetic diagnosis which helps build community for that person, A, but more importantly for us to help identify what underlying health conditions might be implicated so we can develop better treatment plans, better long-term health outcomes for people with disabilities.
So IBR does a lot of research currently in Down syndrome, Alzheimer's. We have a neuro lab, brain banks. It's actually I think the largest in the country in terms of the amount of specimen that we have available. So really we're looking to be a national resource there on Staten Island. So we're really excited about that.
Emyle Watkins: That's fantastic to hear, especially in light of I think genetic testing right now is difficult to access in a lot of ways. I think that's really interesting and really important in this moment too. I've heard from people across the state barriers to accessing genetic testing, and in particular, my disability, Ehlers-Danlos syndrome. There's 13 different types, and I have the type that doesn't show up on a genetic test yet. But for people with EDS, it's important for us to get tested to know if we have one of the more severe types that can have very difficult complications, and I know it took me two years to get tested. I had to go to Rochester.
And I guess I'm wondering for these populations that likely have genetic disabilities, need that testing or are having trouble accessing them, how does this facility make it more accessible to them? Are there lower costs or do you see people from across the state? Can you talk about that at all?
Willow Baer: Yeah, so right now we do very little of it because of the capacity and investment there. So the idea behind the investment in this year's budget is to expand that and build that up, hire additional staff, newer equipment, et cetera, so that we can make that available at low or no cost to New York residents, make it a Medicaid-available service that the state pays for, so really looking forward to being able to make that more accessible.
Emyle Watkins: That's great to hear. And I know you are also working on developing the Center for Learning, which is located on the former site of Willowbrook. Can you talk a little bit about that work and the investment from the state this year in the budget?
Willow Baer: Sure. So that's part of that $75 million. It's the same campus in Staten Island where the Willowbrook State School used to sit. So what we refer to as Building 29, the last remaining Willowbrook State School building, it just was boarded up when it was closed, and it still sits there on the Staten Island campus. As you drive into the College of Staten Island, fenced and growing vines up it, it's a horrific reminder to everyone that goes by it. So we're really excited as part of the $75 million investment in Staten Island to be able to renovate that building to maintain its historical footprint and significance, but to make it habitable again. We will turn it into a center for learning, like you said, and so a lot of the Willowbrook archives and artifacts will be moved in and make it just a community resource so that we don't lose any of that history.
And the idea, while I would love to say it was mine, actually came from a group of Willowbrook family advocates. So people who are in their sixties, seventies, eighties, nineties who lived through having loved ones at Willowbrook and are really worried about with their passing the state losing the significance of the history that happened there. It really sparked a disability rights movement across not just this country but everywhere. And so capturing how important that was and how we are a system that really came from advocacy and where we've progressed and gone since then. So it'll be a center for learning, sort of like a museum, but not a museum because I can't run a museum, and conference space right there on the campus, so it's going to be really great.
Emyle Watkins: I look forward to checking it out when it's built. And that reminds me, I know one of the issues I've reported on and been looking into across New York is that Willowbrook isn't the only former institutional campus that OPWDD has. And I think that's a huge challenge that not only New York State, but Ontario, but multiple countries are reckoning with is that we have these locations of former asylums, of former institutions that some are being turned into wedding venues, some are being turned into ghost tours, some are sitting vacant, some are being questioned of how do you, I guess, ethically redevelop this land where people may have been assaulted or died or experimented on? I guess I'm wondering, as you look to the future of OPWDD, how do you envision the use of some of these sites in other parts of the state, and how are you reckoning with that?
Willow Baer: That is a great question. New York State had several of those campuses. We have closed most of them. We still make use of a few, not for the way that they were institutionalized at the time, but we do have facilities that are secure facilities for people who are very forensically, criminally, behaviorally challenging that need that secure setting. That is super limited but still exists, not just in New York, but in most states.
And the rest of our campuses, we've really tried to turn into office buildings, administrative sites. We rent out to other state agencies. Some of them have been turned into outpatient services in the OASAS setting, for example. And so trying to be good stewards of state space tax dollars. But it does come with a certain stigma, and we know that people served in the system are hesitant to go and access services or to attend meetings on those campuses, and we try to be really aware of that.
I don't know. I don't really have a better answer for that.
Emyle Watkins: No, I think that was a really helpful answer because I think about the West Seneca facility and how the state still uses that for some services and trainings, but also that the state has invested and gotten funders for the East Side clinic on Broadway. I guess I'm wondering, just to elaborate on that, do you see OPWDD moving away from using these properties, or do you still see I guess a value in rethinking how they're used and keeping them in state hands? Right, because I think one of the things we've seen, especially with asylums, they were sometimes these very beautiful, elaborate buildings and commercial developers will take them and turn them into wedding venues and what have you, and I think a lot of people with disabilities also find that troubling. So I guess, do you see value in keeping these in the hands of your agency and how are you involving the public in discussions about the future of those properties?
Willow Baer: So I think it's hard. We have a large footprint. We have a lot of administrative offices, a lot of need for training space, things like that. But those big campuses really aren't the right place for us at this point in time, for the most part. So where we used to have a number of residential opportunities in one huge campus building, for example, we would now have 10 separate community-based residences spaced out throughout a community, and that really is more what we look like today.
So where we have campus-based settings that are underutilized or unutilized, we really want to be better neighbors to those communities. We know that some of our old buildings have become dumping grounds for garbage and interlopers, and nobody wants that either. The Governor has been very focused on using state property for affordable housing, wherever that's possible. So Downstate, we have a large campus that is being auctioned off to develop affordable housing in that area of the state where it really is desperately needed and where, frankly, it would benefit people with disabilities and direct support staff who need to access low-income housing, so really trying to find ways to be better neighbors, better community partners.
There are a lot of rules in the state constitution about how to make different use of state property, and it first in the mental hygiene industry, which is where we operate, the law would require us to first make it usable for another mental hygiene purpose. So sometimes it just takes a long time to get to a place where we're able to make better use of that property, but really looking to be the best neighbors that we can with those pieces of land and those buildings.
Emyle Watkins: I appreciate that context because I feel like most people wouldn't know that about the state constitution, about the law and what goes into that kind of decision making. And I know in the budget we also saw a cost of living increase, correct? Can you talk a little bit about that and about funding towards direct support professionals, those people who help them live in the community?
Willow Baer: Sure. So in this year's budget, we had a 2.6% targeted inflationary increase. So in prior years, that was called a cost of living adjustment, a COLA. This year it was called a targeted inflationary increase. Same idea. It is to get nonprofit providers caught up with the rate of inflation, the cost of doing business. 80% or so of a nonprofit agency's budget is staffing, so most of that 2.6% is expected to then be passed through to provide wage enhancements to direct support staff.
Under Governor Hochul, we have had four back-to-back investments, an almost a $4 billion investment in workforce to make sure that direct support staff are really staying ahead of minimum wage as much as we can. They are really, really hard jobs where people are expected to do a great deal in terms of caring for someone and engaging someone and communicating with them and helping people really to be integrated in the community, and we want them to make more money than they would working at McDonald's. So that's where those investments are so important, and we've been very lucky under this administration to see those investments.
Emyle Watkins: And I know some of those previous investments were 5.4% in 2022, 4% in 2023, and 2.8% in 2024. I'm wondering, I've heard from a lot of people in the nonprofit world and from people with disabilities that a lot of the funding issues this agency faces now are because of a decade of disinvestment prior to Hochul's tenure here. And I guess I'm wondering, do you think the state is catching up after having that significant period of what many call it a period of disinvestment into these state resources?
Willow Baer: Yeah, I think there's a lot of catching up to do, and I think the state has made really significant, significant strides in the last four budgets. So in addition to the 4 billion in COLAs that I mentioned, there have been hundreds of millions of dollars in bonus payments and other incentives. We also just made an $850 million investment on top of that to the rates for our residential and site-based day service providers who were far behind in what it costs reasonably to do business in the state of New York. So those investments have been huge. And so are direct support staff across the state making enough money for what they're asked to do every day? No, they're not. But have we made significant strides to catch up and to be as close to a livable wage and as stable as possible? We absolutely have.
Emyle Watkins: What do you see this workforce or field needing to really catch up and be professionalized and respected as they should be? I know that New York State's done a lot especially to create microcredentialing programs for DSPs and to really try and catch people at the high school level and let them see that this could be a really great career for them. What do you see holistically as this field needing in order to get where it should be and where it deserves to be?
Willow Baer: I think that you hit it right on the head. It's the idea of professionalization. It is not just a job. I mean it is a job, but it is one that is incredibly fulfilling and important and life-changing for people. We have really invested in that idea of professionalization through the credential program. We partner with SUNY, and we partner with our non-profit providers and the National Alliance of Direct Support Professionals to make one-time incentives available to people who go through a credentialing program or free SUNY tuition to take classes and become credentialed so that now staff are not just more educated, but that they get that one-time bonus, and they're just better at their job now because of the curriculum that they've had to go through.
We've invested one-time federal dollars in a huge marketing campaign, which hopefully you've seen, to really highlight throughout the state how important this work is and how it can change your life as someone who takes it on as a career, so really trying to tackle the idea of professionalizing this workforce from all sides.
Emyle Watkins: And while this budget provided a lot for OPWDD, and I'm not asking you to speak out against your boss, but I am curious moving forward in the next couple years, what do you see as some areas that you hope will get additional funding, will expand, will grow? What are some parts of your agency that you do have a lot of hope for or hope will receive additional support in the years to come?
Willow Baer: So we actually had a great budget year in New York State. I think federally we're very worried about Medicaid cuts and how that impacts us and something we definitely need to work on. What I hope we are able to grow, however, is less the far end of the spectrum of services that I talked about and the less expensive, less restrictive, better outcome, more meaningful services in the middle where we can stop overserving people who don't need to sit in a day program all day or don't need to live in a certified residence, but can be out in the community, can be receiving a lower cost, less restrictive assistance to have a job, to volunteer, to engage in their community, however that looks for them. And I'm really looking forward to moving the needle in that direction and whatever it is that we need in terms of support from the legislature and the business councils and local businesses and counties to really try to make sure that we're headed in that direction.
Emyle Watkins: Is part of that challenge attitudinal? I mean, I think for a lot of people with disabilities, there's a lot more programs for us to feel encouraged and supported, and we're seeing a lot more people with disabilities visibly have really important roles, and I think for young people that makes a huge difference. But I wonder, are you encountering people who the attitude towards them has just largely been all that you can do as a day program, all that you can do as a group home who maybe haven't felt encouraged or supported?
Willow Baer: Absolutely. I think it's an entire culture shift and we are, I joke that we're in the midlife crisis of our service system because 50 years ago everyone was living in an institution, and now that's not the case, but we need to continue to progress. There's a quote that I won't remember by Erik Erickson, who's a famous behavioral psychologist, that's essentially whatever you think is best practice today, tomorrow won't be anymore. So you need to always be evolving, and there's a lot of culture shift that needs to happen.
We're a very protective industry, a very paternalist industry, and I think historically we've not given people the dignity of risk to live their own lives the way they want to. And so sure, little at a time we are absolutely chipping away at that and shifting the industry in a more progressive way. I see our nonprofit providers doing incredible, innovative, exciting work with people all the time. And every day that I go out and do a site visit and learn about a program, I become more energized to do this work and better at my job. So I think we're making big changes in terms of that culture.
Emyle Watkins: I know we just saw a huge change in how our government plans to approach healthcare, health programs, disability programs. We're seeing some attitude shifts, and we just saw HHS's, the Department of Health and Human Services federally, their budget brief for 2026. And one of the things that really caught my eye is that, unlike past years, it didn't have a comparison to past years funding.
And I did a little looking into that, and I saw that in previous years, developmental disability programs would receive about $181 to $184 million, and now that's going to drop down to $125. I saw that the National Institute on Disability was getting about $119 million in funding. That's going to drop to about $100. And then, of course, we're hearing these conversations around cuts to Medicaid and Medicaid programs, changing work requirements. I guess I'm wondering what out of all of this is your focus on right now, what is hopeful to you, what's concerning to you, what are you looking at as the commissioner in New York State?
Willow Baer: It's all concerning to me. Right now, it's still a little hypothetical. We need to see that bill negotiated and where it ends up. The analysis in New York State is that we would be losing $13.5 billion in the health and hospital system. So that is not the OPWDD's service system directly. But anytime you chip away at safety net and poverty services, particularly in healthcare, it immediately impacts people with disabilities. So we are really keeping an eye on what that would look like and how that would impact what we already know is a very hard to access healthcare system for people with disabilities.
We know that they also plan on cutting funding to some of the peripheral partners. We have really great partnerships in New York State with three universities who receive federal funding to be university centers for excellence in developmental disabilities, and we really rely on them for a lot of that development of community-based partnerships, for training of healthcare providers, and for a lot of that research. So we know that there is no funding proposed for them in this next fiscal year.
There's also been talk about cutting funding for the Protection and Advocacy Agency. So in New York State, that's Disability Rights New York that provides legal advocacy and representation for people with disabilities, and the Centers for Developmental Disabilities.
Each state has a small organization that's federally funded to give out grants for topics related to developmental disabilities. So in New York State, that's the Center for Disability Services run by executive director, Kristin Proud, and they would potentially be looking at a $4 million loss of federal funding to roll out those initiatives and programs.
So there's a lot that we're concerned about keeping an eye on. The bill itself doesn't directly propose or make cuts to my service system, but we know that as you chip away at the edges, it impacts us. New York State can't possibly weather a $13.5 billion Medicaid cut without looking at where we need to drive down spending in all areas of Medicaid. So we will have to work together to figure out what that looks like in New York, and we're very engaged. We've been through hard times, and we'll figure it out.
Emyle Watkins: I know one of the things I've heard from many people is that New York's Medicaid funding is a little different in that we don't just get... I'm trying to think of how to explain this. Some states get a higher proportion of federal funding and then a portion of state funding to Medicaid, but we in New York have federal funding to Medicaid, state funding to Medicaid, and then also local county funding to Medicaid. Correct?
Willow Baer: Yes.
Emyle Watkins: And do you think that puts New York in a certain precarious situation in terms of this, in that I think people think New York has a lot of its own internal funding to Medicaid, but because we have such a large Medicaid population, because we have New York City and these areas that really have grown substantial Medicaid programs, that we might be hit harder in some ways by losing such a substantial amount of federal funding?
Willow Baer: I think New York State has a target on it with this federal administration, period. Specifically with the IDD service system, we are a $7 billion annual customer of Medicaid, which is huge. So many states will have wait lists for services. We do not. We also in New York State will make Medicaid-eligible people of all different communities and immigration backgrounds, and the federal government has been clear that states that make that available will be punished by a loss of federal match in Medicaid spending as well. So we certainly have a target for more than one reason, and that's what makes New York State great. We are a system. We are a state that makes healthcare and poverty-based services available to people in New York State who need them, but it has certainly drawn attention to New York.
Emyle Watkins: And I mean, you're launching this fantastic program, 25 million to improve health access for people with disabilities. But then at the same time, if we lose funding to Medicaid or certain people lose Medicaid, are you worried about all of these ways that New York is trying to make progress almost being undone or fighting against these potential federal cuts?
Willow Baer: I think it makes the timing even more relevant and even more important. So we knew that people with disabilities had trouble accessing healthcare before we had a federal administration trying to chip away at accessible healthcare. So $25 million in the grand scheme of things is a drop in the bucket, but it makes the timing that much more important to make sure that the equipment is there, the accessibility is there, the cross-training is there, people have access to electronic health records, to partner with hospital systems. I think it will change the tenor of the applications that we get for that funding.
Emyle Watkins: And you mentioned three universities would be impacted by this. What are those universities, and what are some of the work they do, if you can recall, if you can?
Willow Baer: So probably most relevant here is the University of Rochester, Strong Memorial Hospital partnership there. They have a number of training initiatives, and they are also a direct provider of diagnostic and therapeutic services for people with disabilities. So that would be the closest one here, and we have a tremendous partnership with them. There's also the Rose F. Kennedy Center in the city, and we have a third in Westchester.
Emyle Watkins: And I know that one of the programs that OPWDD helps distribute funding for is the Council on Developmental Disabilities, and they're 100% federally funded. Can you talk a little bit about the work they do and if you're concerned that they'll be impacted by this?
Willow Baer: So that's the organization I referenced earlier, the CDD. So they receive about $4 million annually in federal funding to support their staffing as well as the grants that they give out, and they have a number of incredible initiatives. I know that they are particularly concerned about initiatives that they have going on now with self-advocates in the DE&I space as that's become a dirty word federally. They continue to do great work and plow forward. They've received the remainder of last year's funding. So they're hopeful that that will continue, but that would be one of those examples of an organization that does really tremendous work in partnership with us that's at risk of losing their federal funding.
Emyle Watkins: What would you say to the people with disabilities you serve right now who are hearing all of this and they're confused by it, they're worried about it, they're worried how it might impact them in New York State. Do you have any thoughts or message to them?
Willow Baer: I mean, I wish I had a message of hope and good news. I have tried to articulate one. I think that it is very important for people to remain in contact with their care coordinators to make sure they are not losing eligibility, to not losing enrollment. One of the things the federal bill does is it proposes to require additional administrative processes to maintain eligibility for services with the hope that people will lose eligibility. So it's very important for people to stay on top of that. I wouldn't want to live anywhere else but the state of New York. We have our eyes on what's happening. I remain optimistic that we will continue to do great things here, and I would ask people, A, to not get too negative and too worried and to really remain hopeful that in New York we will find a way to do what's right for people because I really believe that we will.
Emyle Watkins: And one of the last things I wanted to touch on is, like you mentioned, a lot of programs are adjacent to yours, but also impact the same population. I think specifically about mental health services and cuts to mental health services. Roughly 30 to 50% of people with IDD are estimated to have a mental health condition. I guess I'm wondering on the mental health front, are you worried that services that help support your IDD population in their mental health could be impacted? Especially in light of if we see people having more mental health issues, that can impact their ability to access certain services. Like for any of us, if we get depressed, if we get anxious, it can also impact what we're like at work and what we're like on a day-to-day basis.
Willow Baer: Yeah, there is a growing number of people with co-occurring mental health diagnoses and developmental disability diagnoses, for sure. We've been very lucky in New York State that the Office for Mental Health has been a tremendous partner with us in building collaborations so that we can find ways to serve people that have co-occurring diagnoses in a way that's much more integrated, and the Department of Mental Health has had a ton of funding infused over the last few years. This is a Governor who mental wellness is very near and dear to her heart, and there has been an incredible made to really stand up, build up the capacity of mental health services in New York State. So I think we're actually very well-positioned when we face the potential chipping away federally because we've done so much work to build up that system over the last few years.
Emyle Watkins: One of the big highlights of the budget was this expansion of Kendra's Law and involuntary commitment, which obviously is handled by a different agency, by Office of Mental Health. But with so many people with developmental and intellectual disabilities, having mental health conditions, I've heard from them concerns over this expansion and worries that if they don't accept certain state services, that they could be involuntarily committed or placed under these orders. Is your agency doing anything to educate them on their rights or to help... How do you help support people in a way that still gives them autonomy and agency and doesn't make them feel at risk of if they say no to something, ending up in one of these situations?
Willow Baer: So the expansion to Kendra's Law and involuntary commitment, as you noted, is on the Office of Mental Health Side. Those changes were not applicable in the same provisions of law that impact our system. So I would certainly defer to Commissioner Sullivan on the finer points of that.
On the OPWDD side, we are incredibly, or strive to be incredibly person-first, person-centered, person-focused, really asking people with developmental disabilities to identify for us how it is that they want to live their lives and to meet them where they are and to provide services in a way that's engaging and meaningful to them. So on our side of the system, we do everything that we can to make sure that that's really at the core of the service system.
Emyle Watkins: And as a final question, what are you hopeful for the future? Right in this moment where I think we are seeing so much difficult and incorrect language and misconceptions about people with disabilities in the media and online, and we're seeing these potential budget cuts, I hear so many people with disabilities struggling and feeling very dismal at this moment. I mean, what gives you hope in this moment for the future of disability rights in New York?
Willow Baer: I do feel hopeful, and I hope that that's not totally naive. I've spent a lot of time meeting with self-advocates, meeting with family members, getting to know the nonprofit providers and spending a lot of time in people's homes and programs and in their spaces and really hearing what's important to them. And I think that as a state agency, we really are addressing the things that I hear are important to people. So I think there are a lot of very valid concerns about the federal administration. The world itself is a very concerning place to many of us, but within my microcosm universe, I think that we are very much focused on the things that are important to people and making changes in a way that really are beneficial to people and their families, and that makes me feel really optimistic every day. It genuinely does.
Emyle Watkins: That's great to hear, and thank you so much for taking the time and answering some really difficult questions in this moment. I really do appreciate it, Willow.
Willow Baer: Thanks so much for having me. This was fun.
