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Disabilities Beat: Understanding the value of direct support professionals (DSPs)

Two chic Black women grab coffee from an outdoor pick-up window. The woman closest to the barista is in a gold-customized travel mobility scooter and wears a fuzzy purple bucket hat, sweater dress, pink backpack, and red face mask. Next to her, the second woman waits in a pink coat and beret. Bits of snow gather on the ground and sidewalk while the cafe’s windows are decorated with coffee decals.
Dominique Davis for Disabled And Here
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Direct support professionals, or DSPs, are workers that support disabled people in living independently. They may help a disabled person navigate their community, cook, do chores, pay bills and other daily tasks of living that a person may just need support to do. This is a stock illustration from Disabled and Here showing two women going to a coffee shop.

New York State’s recently-passed 2024-2025 budget included a lot of changes for the disability community. Direct Support Professionals, or DSPs, did not get the cost of living increase they were asking for in this year’s budget. Advocates say wages are too low for this profession, which leads to people seeking jobs elsewhere. In today’s episode, we talk about what DSPs provide to people with disabilities and the challenges of recruiting and retaining workers.

This week’s Disabilities Beat features part of a recently aired one hour special on the New York State Budget, which you can hear the entirety of by clicking here.

PLAIN LANGUAGE DESCRIPTION: Direct Support Professionals did get a raise in the budget, which means their pay will go up. But it is not as much as the agencies that hire them wanted.

Craig has Down syndrome and lives in Buffalo, NY with his housemates, who all also have Down syndrome. He works at the children’s museum downtown and enjoys spending time with his housemates in his neighborhood. Craig has a close relationship with his direct support staff. Direct support professionals help individuals with disabilities with daily living skills and independence. Craig's staff helps with daily tasks, such as cooking and chores, and he volunteers at local organizations during his day program.

Craig expresses concern about losing his staff due to low pay. Their pay is determined by the state budget. Max explains how direct support professionals didn’t see a wage increase for about a decade, until the current governor came in.

Advocates asked for a 3.2% cost of living adjustment, or raise, for workers, but only received a 2.84% increase, with restrictions. They also asked for each worker to get an additional $4,000 per year in pay, but they did not get that approved. Max expresses concern about the impact of low pay on keeping and finding staff for his son long term.

TRANSCRIPT

Emyle Watkins: Hi, I’m Emyle Watkins, and this is the WBFO Disabilities Beat.

This week we are wrapping up our series of highlights from the recently-passed New York State budget for 2024 to 2025. This year, direct support professionals, or DSPs, who assist disabled people with tasks of independent daily living, did not see the cost of living increase they advocated for.

Today we share part of my conversation with Craig Donatelli, an advocate with Down syndrome who lives independently with support from DSPs. Later in the interview, you hear Craig’s parents, Joyce and Max, as well as Todd Vaarwerk, the Chief Policy Officer at Western New York Independent Living, discuss their concerns with the state’s funding of DSPs.

This interview has been edited for length and clarity, but we have the entire discussion, including more perspectives and additional aspects of the budget on our website at wbfo.org.

Emyle Watkins: Tell me a little bit about where you live.

Craig Donatelli: I live in Buffalo, New York. It’s a beautiful street. It's safe and we do a lot of walking, bike rides, up and back. And also that I got a group of staff: Colin, Phyllis, Debbie, Lisa, all of them. And also Sam and people at my [day] program as well.

Emyle Watkins: Sounds like you have a very, I don't mean to interrupt you, but it sounds like you have a very close relationship with all the staff.

Craig Donatelli: Yes. Because if I had to say, with people with disabilities, they have a home like I have. It's like to lose them, to lose staff here, in [day] program, to lose them, there is no staff and there's no money for it.

Emyle Watkins: What are some of the things your staff is able to do for you when you’re home?

Craig Donatelli: One, when it was my day to cook, it was Phyllis there. She helped me with cooking. It was Debbie, she helped me with some things like Phyllis does. So does Colin and so does Lisa and other staff do too. And at People Inc, wonderful staff there. And there's Sam, Mary Jane and people there, helping me with being independent and also being on things there. They're doing… growing… like today, with my mom, her Mother's Day present. I had a nice, a flower, that I made with [day] program and the program is, I have volunteering. One, I volunteer at the Goodwill store. I volunteer at the one called, the one called Meals on Wheels. And they say, what are your favorite [volunteering]? My favorite, Meals on Wheels are my favorite one.

Emyle Watkins: So, it sounds like your staff helps you do all the things that you know you're able to do. They're just there to assist you and help you through it.

Craig Donatelli: Yes.

Emyle Watkins: And you live with other housemates who have similar disabilities, right?

Craig Donatelli: Yes. Also, I've been there for over 10 years, no, 11 years now. And it's with seven guys.

Max Donatelli: Six guys.

Craig Donatelli: It would be six guys.

Emyle Watkins: And for these direct support professionals that provide services to so many New Yorkers, they didn't see an increase in their wages for, I believe, 10 years, correct?

Max Donatelli: That's correct. That's one of the things that was really problematic and it's been an advocacy issue that we've been involved with probably over the last 15 to 20 years, really pushing to try to help to get pay increases for the direct support professionals. They're really doing some really necessary work and we really need to have quality people that are in those positions. And having them barely above the minimum wage is really in a lot of ways wrong and that's what we've really continued to push for. We asked the agencies that provide these services across New York State, the not-for-profit agencies, they have an organization, New York Disability Advocates, and what they asked for, this provider organization asked for, a 3.2 [percent] cost of living adjustment just to be able to increase those wages enough to start to make them more marketable in terms of being able to attract and retain good staff, quality staff. Unfortunately, we only got about a 2.84 percent cost of living and also was asked for was a $4,000 wage enhancement, which did not get into the budget. So we didn't get, the agencies didn't get what they really needed.

Todd Vaarwerk: Max, being an expert on the numbers, we want the listeners to kind of understand why the numbers are important, why 2.8 is a problem versus 3.2 because somebody's going to say, “well, you got most of your cake, you just didn't get all of it.”

Emyle Watkins: Well, and that 2.84 is with restrictions as well.

Todd Vaarwerk: Correct. We need folks to be able to recognize the value, the value of the direct support professional, the value of the community care worker that assists the person with the disability, you have to compare that with everywhere else they could go potentially to work. And what we're doing is we're chasing a situation where you could either do the reasonably difficult but very rewarding work of working with Craig and his housemates, or you can make a buck fifty-five more an hour starting at Target.

Emyle Watkins: And Craig, with these agencies and these organizations that were asking for more pay for your staff, with them not getting the rate of pay that they were asking for, are you worried that'll impact the staff who work with you now?

Craig Donatelli: Yeah, because right now they're helping me with reach my goal, one is my dream and my future, my staff help me. Yes, and my family and the rest of the family.

Emyle Watkins: And it has to be hard when those staff change over too, right?

Craig Donatelli: Yes. And to help me with, they're helping with all the way up to the ladder.

Joyce Donatelli: Helping you move up the ladder of life.

Max Donatelli: And I think one other thing too that we didn't mention is that the way that this model is, that as much as we've been able to help them to become as semi-independent as possible, when staff aren't there and we have shifts that are open, the families are the backups.

Joyce Donatelli: We're the backup. That's been very concerning for the future.

Max Donatelli: Yes. And particularly right during COVID we lost a number of staff and we as families had to pull a number of those shifts and doing them as fairly as we could. But still, I mean right now Joyce and I are mobile. All the families right now are mobile, can get around, can get to the house. We're the farthest away, we live 20 miles away. We're in Hamburg, he’s in Amherst. But it's a challenge and for the future, that's one of the reasons why we're looking down the road. How is this going to look five, six, ten years from now? How are we going to make sure that there's going to be staff that are going to be able to help during times when we're not able to do that? And for the future we definitely have very serious concerns and that's why we're doing a lot of advocacy, as we can, at the state level.

Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript and plain language description for every episode on our website at wbfo.org. I'm Emyle Watkins. Thanks for listening.

Emyle Watkins is an investigative journalist covering disability for WBFO.