By Marje Stuber, Special to the Post-Gazette

A dire workforce crisis is hurting people with intellectual disability and autism and their families. The most immediate and effective way to resolve this crisis is for the Commonwealth to adequately fund the ID/A provider system so the direct support professionals (DSPs) who care for people with ID/A can make a living wage.

PA’s budget is about to be announced. Are we going to step up for our vulnerable Pennsylvanians?

Long inadequate funding

For decades, funding for DSP wages has been woefully inadequate. The ID/A system is a single payer system with the only funding coming from the state and federal matching dollars. For a decade or more though, funding has fallen dangerously low and, as a result, DSPs are difficult to hire and retain. In fact, many career DSPs have left the profession for work that provides a living wage.

As we anticipate the announcement of Governor Shapiro’s next budget on February 6th, we are anxiously waiting for his administration to address the crisis by including $430 million state dollars to increase the rates for services. The individuals and families who are directly affected are desperately waiting as well.

Anne Couldridge resides in Cumberland County and is the mother of an adult son with ID/A. She says, “For many decades, people like me have fought for the same opportunities for our children that other sons and daughters have. In my opinion, it’s a value statement that last year’s state budget doesn’t even scratch the surface of what people in the ID/A community need. That means our trauma has continued because it was clear that our family — my son — is simply not a priority.

“We need DSPs who are paid appropriately for the work they do so there will be enough DSPs to support people like my son. He deserves the quality of life that only his family and skilled DSPs can provide. To accomplish this, our legislators need to prioritize funding so the people who need the most support can access it.”

Horror stories

How many horror stories do legislators need to hear before they fund ID/A services? Kym Lambert, a Washington County resident, has twin daughters with ID/A. One of Lambert’s daughters fell down the steps because she was left unattended when the other daughter had to leave that room to use the restroom.

Her daughters can never be left unattended, not even for a few minutes. They are not typical children who can be left alone in their room, at the bus stop, or anywhere. They cannot pull up their pants. They cannot lift a toilet seat. The Lambert family needs support just to provide basic care and safety for the daughters they love.

Lambert says bluntly: “This is a state funding issue pure and simple. We need DSPs to provide skilled care for people with ID/A. There is just not enough funding to pay DSPs a wage that they can live on, so there is extremely high turnover and a lot of DSPs have left to take higher-paying jobs.”


She continues, “If the situation doesn’t change and we’re left with inadequate or lower skilled support, my girls won’t be safe. They won’t have access to their community. They won’t have a sense of purpose. They’ll have one person watching them both and stuck in the living room all day.” That thought is not only heartbreaking. It’s unacceptable.

“It’s not just about money,” say Rita Quashie-Smith and Brooke Urda, DSPs with Emmaus Community of Pittsburgh. “As DSPs, we are trained and educated as trauma-informed professionals. We know how to re-direct and provide specific care for our clients so they can work through these incidents and survive, literally.”

Yet, they say, “We do not get the support or pay we earn and deserve. We provide nursing assistance, we are often our clients’ only friends and family, and our work is physically and mentally demanding. These people just want to live in their homes and be part of their community. We must find a way to support DSPs so they can afford to do this job and help create a meaningful life for all Pennsylvanians.”

Sacrificial and hard-working

DSPs deserve to be valued and appreciated. They make sacrifices. They work hard administering medications, providing daily personal care, de-escalating potentially harmful behavior, transporting, attending medical appointments, and the list goes on. They have personal relationships with the people they serve, and they are watching colleagues leave the profession because they just couldn’t afford it any longer.

As we wait to hear about the budget, we implore the Shapiro Administration and our elected officials to provide a living wage for the DSPs whose skills are desperately needed by some of Pennsylvania’s most vulnerable citizens and their families.

Marjie Stuber has worked with the ID/A provider community for almost 15 years, and currently serves on the advocacy committee of The Provider Alliance.