HARRISBURG — The signs were bright and bold. “The system is broken,” one sign read. “Just like I-95.”
Service providers, caregivers and family members of people with intellectual disabilities and autism packed the Pennsylvania State Capitol last month to deliver a stern warning to lawmakers, saying without huge investments in maintaining and expanding the programs, the safety net for some of the state’s most vulnerable residents will unravel.
While Gov. Josh Shapiro celebrated the swift reopening of the I-95 corridor following last month’s bridge collapse, advocates for people with intellectual disabilities and autism expressed outrage, wondering why they too were not receiving emergency assistance.
“Two weeks?! We’ve been asking for years!” said another handmade sign along with a photo of I-95.
Disability service providers, who run day programs, home care teams and residential facilities, say they need more funding from the state to stay in business, raise wages, attract more workers and serve the 60,000 Pennsylvanians who need their services.
About 34% of disability service agencies have closed programs since 2020, primarily due to staffing shortages, according to a survey by groups representing disability service providers.
More than 12,000 people in Pennsylvania are waiting for approval to receive state services, and about 4,000 more have been approved for services but have been unable to receive them because of pandemic closures and have not yet returned, primarily due to a lack of available space.
And it seems unlikely that a relief package will arrive this year. Governor Shapiro and lawmakers have yet to finalize the state budget, but the spending plan approved by both the House and Senate would increase spending on these programs by about 13%, totaling $2.37 billion. But health care providers are demanding even more, arguing that the increases won’t keep up with inflation and won’t fix underlying problems in the health care system.
Flossie Snyder, 72, of Philadelphia, said her son, Todd Snyder, hasn’t been able to return to day care for three years since the pandemic began, in part because of understaffing and failure to wear masks. Flossie, of Fairmount, spent months as the sole caregiver for Todd, 37, who has cerebral palsy and an intellectual disability.
Todd Snyder is barely able to speak and requires a walker or wheelchair to walk. His state’s Individual Needs Plan states he needs 24/7 care, but an industry-wide shortage means his mother can only get 40 hours of care per week. His husband suffered a stroke, and their longtime aide, who provided overnight care one day a month to give the Snyders time off, died during the pandemic.
“Honestly, I feel like hell is here on earth for me,” Flossie Snyder said of the difficulties of the past few years. “This has been a very tough place for me. What will happen when I’m gone?”
Low wages have led to labor shortages and long waiting lists
People who receive disability services may need help completing everyday tasks, such as using the bathroom, eating, or staying safe. Programs can also provide learning and work opportunities for people with disabilities.
Healthcare providers are requesting reimbursement from the state rather than receiving upfront checks, but they say they need higher reimbursement rates to stay open.
SPIN, a nonprofit provider of services for people with intellectual disabilities in Northeast Philadelphia, has resumed about 90% of its services after closing at the beginning of the pandemic, but it has struggled to staff its programs because the jobs are low-paying. SPIN has a waiting list of about 25 people for its programs, a small number compared to other providers.
“We get calls every day,” SPIN President Cathy Brown McHale said. “The answer is, ‘We can’t even afford to bring back the people who are already being served.'”
To pay more than the state covers, providers often have to pay out of their own pockets. For example, Pennsylvania pays only about $15 an hour for disability services workers, compared with the average hourly wage statewide of $16.72. Without state funding, providers say they can’t pay competitive wages and fill open positions.
“[Workers aren’t] “They’re leaving in tears because they want to leave the industry,” Spin CEO Judy Dotzman said, “because they know this is their passion and their life’s work and they can’t afford to continue doing it. … It’s heartbreaking and it’s so frightening.”
In a statement, a Department of Human Resources spokesperson said Secretary Val Arkoosh and Shapiro “remain committed to working with service providers and partners to find solutions that will result in increased wages for workers in these essential industries so they can continue to serve Pennsylvanians.”
Mark Davis, president and CEO of Pennsylvania Autism and Intellectual Disability Advocacy, said it’s up to the state to properly fund such services.
“It’s horrifying for us to watch the system break down right before our eyes,” Davis said, “and we feel like that’s something that no one is listening to. We’ve seen promises not be fulfilled, and when people understand and want to help, nothing is done. So we’re sitting here while the system continues to break down.”
Advocates fought for an increase in the state budget.
During state budget negotiations this year, service providers worried their funding would be cut. The House Democrats’ budget proposal cut funding for disability services from Shapiro’s original budget proposal, citing low utilization rates. But service providers argued that the drop in utilization rates doesn’t mean there’s a decrease in demand 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 reimbursements to disability service providers and programs, but that figure is still subject to change because the budget has not yet been sent to the governor for his signature.
Families are still hoping for relief. Flossie Snyder said her son has returned to his pre-pandemic routine of attending his day program at Spin and is much happier, but she keeps sleeping at night wondering what will happen to him if she and her 78-year-old husband die.
“It was very hard to get help,” she says. “You can’t just ask a neighbor, ‘Can you just sit with Todd for two hours?’ You have to know what he can and can’t eat, how to change his diaper if he has a bowel movement, how to take him for a walk. You can’t just have someone come and sit with him.”
Snyder is looking for extra help on weekends and at night and is struggling to find caregivers amid a staff shortage.
“My son and other people with disabilities often don’t get the treatment they deserve because of their disability,” Snyder said. “He just wants to be accepted and loved like everyone else.”
Clarification: This article has been updated to clarify the rate of disability program closures since 2020. About 34% of disability service providers in Pennsylvania have closed the individual programs they operated. It has also been updated to clarify how House Democrats proposed changes to funding for disability services.