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PA: (OP ED) 12,000 "wait for years" for autism/intellectual disability services

Feb 25, 2023, Pittsburgh Post-Gazette: Editorial: An opportunity to stabilize Pa.’s disability care system

Despite pleas from disability advocates, care providers and family members, Pennsylvania continues to underfund care for people with intellectual disabilities and autism (ID/A). A new administration in Harrisburg could finally remedy the state’s deplorable stinginess toward a perennially vulnerable population with a legal right to professional care.

To put a human face on this crisis, Gov. Josh Shapiro should meet soon with a Pennsylvanian with ID/A and his or her family members. There is no replacement for seeing and speaking with a person dependent on state care to demonstrate the importance of adequate funding for the system.

Care providers, who are themselves completely dependent on Medicaid reimbursements administered by Harrisburg, are asking for a modest increase in the state’s 2023-2024 budget, up to $430 million. That allocation would give the system long-awaited financial stability by allowing more direct support professionals (DSPs) to be hired so the commonwealth can chip away at the shameful waiting list for essential care.

Last year, the providers’ requests for funding, as usual, fell on deaf ears. Since we first reported on this crisis a year ago, the waiting list for care remains intolerable. Twelve thousand Pennsylvanians with ID/A and their families wait — for years — for the support the state owes them. Of those, more than 5,000 are considered to have “emergency” needs, and more than 80% of those are considered “critical.”

While state lawmakers look the other way, families sacrifice everything — jobs, financial stability and even their homes — to care for loved ones with profound disabilities. Yet they remain invisible, both to the public and to the public’s representatives. Former Gov. Tom Wolf wouldn’t, despite multiple opportunities, meet with Pennsylvanians with ID/A. We hope that

Mr. Shapiro will begin a new tradition of welcoming these hard-working, often desperate families to his office, or even going to them. It is their office, too, just as surely as it belongs to other constituents (and donors and lobbyists for that matter).

Meanwhile, the workers who provide compassionate care to people with ID/A continue to be underpaid. Despite record inflation, the newly approved pay rate has barely increased from last year, and still remains below $15 per hour. Worse, this rate is scheduled to remain in place for at least three years. That will undermine efforts to hire the talented and caring workers clients need, and contribute to outrageous turnover rates of more than 50% annually. More funding for ID/A services would allow wage reforms, such as the proposal from Rep. Dan Miller, D.-Mt. Lebanon, to index DSP wages to inflation.

Mr. Shapiro should keep his promise to be a governor for all Pennsylvanians by meeting with representatives of the ID/A community, and advocating for funding to stabilize the state’s care system. A comparatively small investment could alleviate a terrible, if hidden, crisis.


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