A recent report from the Centers for Disease Control and Prevention finds 1 in 36 8-year-olds in the U.S. had autism in 2020, up from 1 in 44 two years before – part of trend dating back several years.
The CEO of Wildwood Programs – a disability services provider in New York’s Capital Region – says the report should be a call to action. WAMC's Jim Levulis spoke with Lou Deepe about the findings and whether his organization is seeing the increase in its work.
Deepe: We are absolutely. The data that came out, in 2020 it was 1 in 36. That's the most recent, is 2020. Prior to that, it was 1 in 44 in 2018 data and 1 out of 150 in 2000. So it has jumped, you know, exponentially. And how that's playing out on a local level, regional level is our waitlists for really most, if not all, of our programs and services has increased almost as dramatically. The need is growing in the community, there's no doubt about that. And agencies, you know, Wildwood and others are struggling to meet that need, because of staffing shortages and lack of investment in the sector.
Levulis: And what are some of the services needed/provided typically, for those diagnosed with autism?
Deepe: I mean, always, you know, the earlier that you can intervene with those children, the better in terms of their long-term outcomes. So early intervention services. Wildwood has a school, for ages five to 21, we're seeing much more of a waitlist for that service and that support. For adult services, it's our day services, it's employment. It's certainly residential, in terms of, you know, a home for somebody, there's just not enough investment in homes and those opportunities for people and they're having to stay home longer with their families. Families are getting older and getting more and more concerned about, you know, what life is going to be for their loved ones, when they're no longer able to care for them.
Levulis: And speaking about this report, experts essentially attributed the change to improved screening and autism services, just like what Wildwood provides. And then increased awareness and advocacy, as well as it pertains to autism. Is that sort of what you're seeing through maybe what your data has?
Deepe: Yeah, I think that's certainly a big part of it. It's hard to really kind of tease out how much of that is there, whether that's all of it, or if there is certainly just an increase in what we're seeing in our community. You know, one of the things I found really interesting about that report was a significant increase in the prevalence identified in Black and Hispanic communities. And I think a big part of that is, you can kind of connect that back to better outreach and screening. And in some cases, you know, the destigmatizing of a diagnosis of autism in all of our communities, which is, that's encouraging. So you know, that part of the report is positive.
Levulis: And following this report, I understand you sent a note out to the Wildwood community, noting that this report is essentially a call to action. Wondering if you could expand a bit on that?
Deepe: Absolutely. So I think you know, where we are currently, in terms of a provider community and the disabilities field in New York state, we're already at crisis level. We've been saying it for a while now, we were at crisis level, prior to the pandemic, in terms of our ability to recruit and retain staff based off of the rates that were given through New York State. And it's only gotten worse since the pandemic. A lot of agencies have had to shutter programs, day programs, they've had to close residences and take people who have lived there for 5,10,15, 20 years and put them in other residences and other vacancies that the agencies have and totally uproot people. You know, it ties in directly with our advocacy efforts right now. You know, the state budget still hasn’t been passed. You know, we're asking for 8.5% cost of living adjustment to build off of the 5.4% we received last year. We had asked for an enhanced salary for our direct support professionals, those who work directly with individuals with autism and other disabilities. And that was not included in the budget, to our knowledge. So we're continuing to fight and I think our concern and part of the reason for my letter was, if we're in that situation now and really having to struggle and having to fight for you know, for this at this point, these numbers that we're seeing from the most recent CDC data are a warning sign. The need is going to increase. And if we wait, you know, for these, I mean, this was for eight-year-olds in 2020, so we're already three years beyond that, they're 11 now. In 10 years, they're going to be graduating from the from the school system, and there's no investment in adult services and these current children and their families are going to be left with nothing. So that's what I meant by a call to action. Like we have to start investing in this and this disabilities field now and not wait.
Levulis: And we'll mention for our listeners here, we're speaking the New York State budget now, nearly two weeks late. We're speaking here April 13. We last spoke in January 2022. And at the time, you said Wildwoods’ workforce was around 650 to 675. That was down from a recent high of 750 about two years prior. You mentioned some workforce staffing challenges in today's conversation, where does the workforce strength for Wildwood stand now?
Deepe: So we actually recently merged with another organization, the Alternative Living Group, a similar organization in the Capital Region. We remained Wildwood as an identity. So we now have combined services and workforce etc. So now we have a workforce of just over 1,000 within Wildwood. But our vacancy rate really kind of hovers anywhere between 15 to 25%, depending on the services, and that's pretty indicative of everybody else, you know, in terms of other agencies like us in the Capital Region, probably even statewide. So, you know, it's one out of every four in terms of the vacancy, it's really hard to, you know, do quality supports and services for people given those kinds of numbers. And it's really the difference between just kind of, you know, caring for someone and giving them the very basics that they need and being able to really help them lead their best lives.
Levulis: You mentioned that merger, essentially becoming a larger organization. You've detailed that you see that the disability service sector is in a crisis. Do you see strength in those mergers, being able to maybe offer more competitive pay as a larger organization or those sorts of things?
Deepe: Well, that's certainly the hope. And that's why we went into this process and explored that process. The hope is that you can find some efficiencies through that process, and be able to take that money and invest in staff and salaries, and be able to be more competitive. Right now, you know, based off of the rates that were given through the state, you know, people are making almost, you know, minimum wage for jobs that really, truly, you know, have people's lives in your hand. And, you know, it's not a living wage. It's not indicative of the work that's done. So you know, providers like Wildwood are left to try to figure it out. And, you know, through whatever means, and, you know, part of the reason why, like I said, we went through with the merger was to try to realize some efficiencies and put money in people's pockets.