A third of Pa. disability service providers have closed programs, and people who rely on the programs say the system is in freefall

HARRISBURG — The signs were bright and bold: “The system is collapsing,” one read, “just like I-95.”

Service providers for people with intellectual disabilities or autism, along with caretakers and families, packed the Pennsylvania Capitol building last month with a dire warning for lawmakers. Without a massive investment to maintain and expand programs, they said, a safety net for some of the state’s most vulnerable residents will fall apart.

While Gov. Josh Shapiro celebrated the speedy reopening of the I-95 corridor following last month’s bridge collapse, advocates for people with intellectual disabilities or autism angrily wondered why they couldn’t also receive an emergency response.

“Two weeks?! We’ve been asking for years!” another handmade sign read, with a picture of I-95.

Disability providers that run day programs, in-home care teams, and residential facilities say they need more state funding to stay open, increase wages, attract more workers, and offer services to the 60,000 Pennsylvania residents who need them.

About 34% of disability service agencies have closed programs since 2020, largely due to a shortage of workers, according to a survey by the organizations representing providers.

More than 12,000 people are waiting to be approved for state services in Pennsylvania, and about 4,000 more are approved for services but left them due to pandemic closures and have not yet returned — mostly due to the lack of available space.

And it appears unlikely that relief will come this year. While Shapiro and lawmakers have yet to finalize the state budget, the spending plan approved by both the House and Senate would provide a nearly 13% spending increase for these programs, totaling $2.37 billion. But providers had asked for more and say that boost doesn’t make up for inflation and won’t fix the core issues in their system.

Flossie Snyder, 72, of Philadelphia, said her son, Todd Snyder, couldn’t return to his day program services for three years after the pandemic began, in part due to the workforce shortage and also because he wouldn’t wear a mask. The Fairmount resident spent months as the sole caretaker for Todd, 37, who has cerebral palsy and intellectual disabilities.

Todd Snyder speaks few words and requires a walker or a wheelchair to get around. His individual support plan from the state says he requires 24/7 care, but his mother now gets only 40 hours of help a week due to an industry-wide workforce shortage. Her husband had a stroke, and the Snyders’ longtime aid who offered overnight care once a month to give them a night off died during the pandemic.

“I feel like, truthfully, my hell is on earth,” Flossie Snyder said about the challenges of the last few years. “It’s been so difficult for me here. What’s gonna happen when I’m not here?”

People who receive disability services can require assistance completing such daily tasks as using the bathroom, feeding themselves, and keeping themselves safe. Programs can also offer learning and work opportunities for people with disabilities.

Providers bill the state for reimbursement rather than receiving up-front checks. But they say they need higher reimbursement rates in order to stay open.

SPIN, a nonprofit service provider for people with intellectual disabilities in Northeast Philadelphia, has reopened about 90% of its services since it was shut down at the start of the pandemic, but has struggled to staff programs due to the jobs’ low pay. About 25 people are on a waiting list to attend SPIN programs — a low number in comparison with other providers.

“We get calls every single day,” said Kathy Brown-McHale, SPIN’s president. “The answer is, ‘We don’t have capacity to even bring back the individuals who have been already in our services, and we cannot do it.’”

Providers often pay out-of-pocket to provide higher wages than what the state covers. For example, the statewide hourly wage average is $16.72. But Pennsylvania only covers approximately $15 per hour for disabilities service workers. Without more state money, providers said, they’re unable to pay competitive wages and fill open jobs.

“[Workers aren’t] leaving this industry because of the fact that they want to,” said Judy Dotzman, SPIN’s CEO. “They leave in tears, because of the fact they know this is their passion, this is their life’s work, but they can’t afford to do it. … It’s heartbreaking, and it is very scary.”

In a statement, a spokesperson for the Department of Human Services said Secretary Val Arkoosh and Shapiro “remain committed to finding solutions in collaboration with providers and partners that lead to higher wages for workers in these essential industries so they can continue serving Pennsylvanians.”

Mark Davis, president and CEO of the Pennsylvania Advocacy and Resources for Autism and Intellectual Disability, said it’s the state’s responsibility to properly fund these services.

“To see our system crumbling before our very eyes, it’s scary to us,” Davis said. “And it’s something that we don’t think is being heard. We’ve seen promises that have not been realized, or folks understand and want to help, but then we see nothing done. So we sit here, as the system continues to disintegrate.”

During state budget negotiations this year, providers worried that their funding would be cut. The House Democrats’ budget proposal cut funding for disability services from Shapiro’s initial budget pitch, citing a low utilization rate. But providers argued that the decrease in utilization does not mean there’s decreased need for services, but rather is the result of program closures and staffing shortages.

The spending plan approved by both the House and Senate includes $2.37 billion for disability provider reimbursements and programs. But that figure could still change, as the budget has not yet been sent to the governor for his signature.

Families are still hoping for relief. Flossie Snyder said her son is much happier now that he has returned to his pre-pandemic routine of attending a day program at SPIN. But she said she still stays awake at night, wondering what he will do when she and her 78-year-old husband are no longer alive.

“It’s been very hard to get help,” she said. “I can’t just say to a neighbor, ‘Can you come sit with Todd for two hours?’ Because they have to know what he can eat, what he can’t eat, how to change his diaper if he has a bowel movement, how to walk him. … I can’t just have somebody come sit with him.”

Snyder is still looking for additional help on weekends and during the nighttime, and has had a hard time finding a caregiver amid the worker shortage.

“My son and other people with disabilities sometimes aren’t treated the way they should be because of their disabilities,” Snyder said. “He just wants to be accepted and loved like everyone else.”