After years of begging multiple gubernatorial administrations and legislative leaders for adequate funding to save and sustain Pennsylvania’s system of care for people with intellectual disabilities and autism (ID/A), disability service providers can finally say, without reservation: Thank you.

Gov. Josh Shapiro’s budget proposal includes enough funds — including, crucially, timely increases to direct support professional (DSP) reimbursement rates — to fulfill the state’s legal obligation of care for people with ID/A and their families.

The work is not over: Last year, this funding was slashed during budget negotiations, on the spurious grounds that the provider community hadn’t used all the funds allotted in the previous year. But the reason for that was obvious enough: The state’s reimbursement rates were so low, it was impossible to hire enough DSPs to spend the appropriation and to fulfill the community’s needs.

And those needs remain enormous. We have reported for two years now that there is a waiting list 12,000 families long, with 5,000 considered at-risk, emergency cases. Those numbers have increased to more than 13,000, with nearly half considered especially urgent.

When the state’s system — which consists of state-run institutions and community-based care provided by private organizations — fails to meet its obligations, families must step into the breach to provide 24/7 care. That often leads to lost income, lost relationships and even lost homes.

Take Sandi Shaffer, a Westmoreland County single mom who couldn’t pay her mortgage because she cared for daughter Kate, who is nonverbal and requires constant supervision. There simply aren’t enough DSPs, who do the challenging and compassionate work of caring for people like Kate, often including feeding and bathing.

Mr. Shapiro’s budget contains a $217 million state investment, which triggers federal matching dollars up to $266 million, bringing total funding to over $480 million.

At least as important as the top-line number, however, is the timing. DSP reimbursement rates are adjusted every three years, with the current paltry rate of $14.25 per hour coming into force in 2022. Last September, the Shapiro administration ordered an immediate, early review of DSP rates. This funding proposal is the result of that review, and includes a 12% increase in rates that would come into force immediately upon the the budget’s passage.

This raises the stakes of passing a complete budget by the constitutionally defined deadline of June 30.

It must be said that the 12% raise, while substantial and appreciated, will only raise reimbursement rates to about $16 an hour, which will cash out to average DSP wages around $18 or $19. That is not a lot for people doing such difficult and crucial work. We hope the General Assembly will soon legislate annual inflation adjustments to the rates, as well as wage parity between the state’s institutional and community-based workers.

Still, this proposed appropriation is the biggest step toward stabilizing the state’s system of care in over a decade. Senate Republicans and House Democrats should consider it off the table in budget negotiations: Caring for those who can’t care for themselves is the very foundation of a decent society, and a decent commonwealth.

First Published February 14, 2024, 5:30am