How a Lancaster mother convinced Gov. Josh Shapiro to increase funding for adults with disabilities

HARRISBURG — Cindy Jennings had talked to her lawmakers before, with little success.

Jennings, a 60-year-old Lancaster County resident, has spent 30 years advocating on behalf of her son, Matthew, who has multiple intellectual and physical disabilities that require around-the-clock care.

So when she was asked by an advocacy group to meet with Gov. Josh Shapiro last fall, she didn’t have high expectations. She went into his Capitol office armed with his own words from his inaugural address: Pennsylvania is a state that “respects you for who you are — no matter what you look like, where you come from, who you love or who you pray to.”

“I told him, ‘History has shown me that people with disabilities are not valued in Pennsylvania. They’re just not,’” Jennings added.

Her story influenced Shapiro, a first-term Democrat, to prioritize an overlooked issue. Funding for disability care is not as flashy as some of Shapiro’s other top concerns, such as reaching across the aisle to support school vouchers or implementing a new system for public school funding. But Shapiro, who has also worked to raise his national profile and is considered a potential 2028 presidential candidate, acted on her words.

Advocates had to fight potential cuts to those programs during state budget negotiations last year, but Shapiro proposed a substantial increase in funding for the upcoming fiscal year following his conversation with Jennings. That money is expected to pass as part of a budget deal in the coming days.

Jennings is one of many aging parents across the state who serve as the main caretaker to their adult children with intellectual disabilities or autism. The more than $2 billion state system that offers home- and community-based services has a 13,000-person waiting list, leaving many families on their own — unable to work or take breaks from the physically and emotionally demanding caregiving work. Advocates have been asking the state for more funding for years, and the problem was compounded by pandemic-related closures. A third of disability service agencies have closed programs since 2020, according to a survey last year by organizations representing providers.

Right after that meeting with Jennings, Shapiro said he gathered his top advisers and told them they needed to take on the issue.

“We are going to fund this initiative,” he recalled telling his staff. “And we’re not going to go small ball here. We’re going to go for what is needed.”

In the budget Shapiro unveiled in March, he proposed a $483 million funding increase this year of federal and state dollars that would allow service providers contracted by the state to raise wages from $15 per hour to $17, as well as $78 million to expand capacity and reduce the number of people on the state’s waiting list for services.

Jennings was surprised when Shapiro invited her back to the Capitol months later for his budget address, and even more so when he gave her family a shout-out as part of his speech.

After his budget address, Shapiro told her he listened, Jennings recalled. “I told him I felt heard.”

Shapiro said meeting Jennings brought back memories of his time serving as a state representative, when intellectual disability and autism advocates often came to the Capitol to ask for quality care, and parents expressed concern about who would care for their children when they’re gone.

Her story resonated with him. Jennings told the governor about being an aging mom caring for her adult son who can’t verbally communicate. She struggles so much to find quality caregivers that she often has to rely on her own 87-year-old mother to pitch in.

“That really is an example of the story that plays out across Pennsylvania every day,” Shapiro said. “The Jennings family and others deserve better than what they’ve gotten in the past, and I want to be a governor that delivers for them.”

Last year, service providers were concerned when Democrats proposed cutting their funding due to underutilization. But advocates rallied in the Capitol to tell leaders that the underutilization was because of a worker shortage, and was caused by the low wages providers paid based on how much the state gave them. The funding was eventually leveled out, with an additional 13% spending increase added to help the struggling industry. But advocates said it wasn’t enough to keep up with inflation and wouldn’t fix the core issues in the long-underfunded system.

“Two weeks?! We’ve been asking for years!” read one sign from a rally last year, shortly after Shapiro rebuilt I-95 in two weeks after its collapse.

But this year, advocates and providers had a much more positive tune as they gathered for another rally in Harrisburg last week, thanking Shapiro for his attention to the issue. Advocates seemed hopeful they’d get the long-awaited funding bump they need to reduce the lengthy waiting list for services.

“I gotta tell you, that feels really good to stand here with a smile on our face,” said Sherri Landis, the executive director of the Arc of Pennsylvania, at the rally.

Rep. Stephen Kinsey (D., Philadelphia), who chairs the House Human Services committee, said this is the first time in his 12 years in Harrisburg that lawmakers were poised to make a major investment in the underfunded and complex industry.

One self-advocate, Rachel Brewer, said at the rally that she’s been waiting for services since 2019, when she graduated from high school.

“My dad once said, ‘I don’t want to be left out in the rain,’” Brewer added. “Do not let that happen to me, or us.”