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Lack of workers, funding jeopardize day programs for people with autism, intellectual disabilities

Tribune-Review - 3/14/2023

Mar. 14—Marjorie Bungard is one of the lucky ones.

Her days at Community Living Care's New Florence program mean regular socialization, an exercise routine and stops at the grocery store. Last week, she made a St. Patrick's Day craft.

"This is where most of my friends are," she said.

There are five people on a waiting list — hoping to get into the day program for people with autism and intellectual disabilities — if the agency can increase its workforce of direct support professionals. That has proved difficult, said Jason McIntosh, chief administrative officer for the agency and director of the New Florence facility.

Before covid, there were 19 people who attended the program. Now, there are nine, he said. The number of direct support professionals has dropped from eight to four.

Advocates say they need more money from the state — the only source of funding for such agencies — to increase wages in an effort to adequately provide services such as the day program and residential group homes.

When Bungard doesn't have access to the New Florence program, she is bored.

"She is a very social woman, and when she was not able to be here, she would get very depressed," said Alice Leighton, her sister.

Providers of those services are facing a crisis: A dearth of direct support professionals means people who have funding to attend day programs or live in group homes may be placed on waiting lists or left with little choice in their day-to-day lives, advocates say. It's an issue that can have a ripple effect for them and their families while negatively affecting a person's ability to develop, connect socially and work.

"We are very concerned that our system is falling apart in front of our eyes," said Mark Davis, president and CEO of Pennsylvania Advocates and Resources for Autism and Intellectual Disabilities. "We see contractions in every sector of our system, and we see people not being able to access services that are critical supports to them, either not as often or not at all.

"We've seen a growing issue with what we call a 'hidden waiting list' — that means people have funding for services but are unable to obtain services."

Underfunded, understaffed

It's a complex system where providers are funded solely by the state and through Medicaid. Advocates say they need more

money from the state — $430 million — to attract more direct support professionals with beefed-up hourly wages, which average around $14 to $15, depending on the area.

"The work that they do is much more valuable than that," Davis said.

The provider doesn't control those amounts, said Nick Kratz, vice president of government relations with the state advocacy group. The lack of staffing has forced community providers throughout Westmoreland County to close group homes over the past year and limit the number of people who can access day programs where they work with support staff to interact, learn and grow.

It's becoming challenging to maintain a level of options in a system that promotes choice — where a person wants to live, what they want to do for work and with whom they want to spend their time — Kratz said.

"Right now, as a system, we are failing," said Sharon Roskovich, CEO of Community Living Care.

At the center's Greensburg day program, there are 15 people on the waiting list.

"When people come here during the day, then their families can work. They can ... take care of things that they need to," she said.

Agencywide, there are 177 direct support professionals. Before the pandemic, that number was 246. Staffing issues have prompted Community Living Care to close three group homes — where, typically, a few people live with around-the-clock supervision — in Unity, Jeannette and Hempfield, while a second one in Jeannette remains vacant, McIntosh said.

They're not alone.

A survey of about half of the providers in the state conducted by the advocacy group found that more than 4,000 Pennsylvanians with autism or intellectual disabilities are no longer receiving services, Davis said. Staffing was the most common issue.

"We've never seen a contraction of our residential system like we're seeing now," he said.

Dedicated staff lauded

A group home where four people live in Mt. Pleasant, operated by Valley Community Services, is set to close. Two others shuttered last year, said G.N. Janes, chief executive officer.

"Not because we don't want to provide the supports, but because we can't," he said. "We simply do not have the staff."

The agency has seven homes in Arnold, New Kensington, Cheswick and Springdale, all of which are short-staffed. In January, nearly one in five hours worked by direct support professionals in those homes was overtime, he said.

"The only reason we haven't had to close any homes in that area is because of the dedication of our direct support professionals," he said.

Wesley Family Services has opened two group homes over the past six months, and the agency's day program in O'Hara expanded to help adults with autism, said Heather Duncan, vice president of transition-age and adult services. Those homes are among 22 in Allegheny, Westmoreland, Armstrong and Butler counties that provide services to 66 people.

"Wesley Family Services has experienced an increase in referrals to our day program as a result of other agencies discontinuing services," she said.

All of the agency officials praised the work of their direct support professionals who sometimes work extra to make sure clients maintain their current level of service.

"Direct support professionals help individuals remain safe, healthy and independent in their homes and in the community," Duncan said.

Socialization at stake

During a gathering of advocates and leaders in Greensburg this month, state Rep. Eric Nelson, R-Hempfield, pointed to 500,000 people who started receiving government benefits during the pandemic, but no longer qualify for them, as a potential source of new direct support professionals.

Nelson is a member of the state's legislative task force established in 2022 that is focused on examining how Pennsylvania delivers services to people with autism and intellectual and developmental disabilities. The group is looking into needs, system capacity and other facets of the program, including workforce issues. A report will be prepared with its findings.

He said it is important that the state encourages able-bodied people to get back into the workforce as a short-term fix.

"These are wonderful careers, and there is a lot of satisfaction in serving here," he said. "The consequence is that our individuals with disabilities are left sitting at home watching TV and losing wonderful opportunities for socialization."

If the New Florence center had more staff, they could help day program participants resume work in the community, helping local businesses and churches with tasks like folding bulletins and assembling silverware packs, McIntosh said. That would add a different level of socialization for the program that provides stability and a schedule for Bungard, her sister said.

Staffing issues have left others seeking that stability without options, which Leighton said can be breach of basic human rights.

"She needs to feel like she's valued, that her opinions and her feelings count for something," Leighton said.

Renatta Signorini is a Tribune-Review staff writer. You can contact Renatta by email at rsignorini@triblive.com or via Twitter .

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