Trending
Low reimbursement rates are contributing to high turnover and staffing shortages at agencies employing direct support professionals, forcing families of those with intellectual disabilities and autism to scramble for service or deal with the strain of providing care by themselves.
An estimated 58,000 Pennsylvanians with intellectual disabilities and autism need some assistance every day to reach their highest level of independence and opportunity, according to the state Department of Human Services (DHS). In Pennsylvania, the average direct support professional (DSP) wage is $18.53 per hour, according to a recent study by the Center for Disability Information.
The House Human Services Committee heard testimony Tuesday from officials, DSP agencies and parents of individuals in need of care from DSPs.
"When did working in a warehouse or picking up trash become more valuable than caring for a human life? I ask this question not to undermine those jobs, but because most of those positions pay more than DSPs are paid," said Zena Ezekiel, a DSP at Invision Human Services. "When I think about walking away from this profession, I then think about the person I have supported for 16 years and I cannot do it. I think of his smile and the bond I have formed with him, and that means more to me than I can describe. That relationship, despite all the challenges and hardships, has made it all worthwhile."
Pennsylvania has a 41% annual DSP turnover rate and an 18% DSP vacancy rate, according to the Center for Disability Information study. The high turnover rates leave DSPs frequently looking for new placements and families of individuals with intellectual disabilities and autism constantly readjusting to a different person in their home.
"When families do get lucky and find a provider willing and able to staff their child's case, many times the staff doesn't last long. In the 10-plus years that we have struggled to find and keep staff for in-home services, at times I wondered if I needed a revolving door on my house. That's how frequently we have lost staff," said Rose Baumann, a Washington County resident and mother of 24-year-old Collin, who has profound autism. "We have a system that is not equipped to recruit, compensate, adequately train and continually develop and mentor DSPs who are able and willing to support individuals as complex as my son."
Rep. Jessica Benham, D-Allegheny, introduced bipartisan legislation to create an annual inflation-based increase for Medicaid rates paid to providers serving people with intellectual disabilities and autism, with the goal of also increasing wages for DSPs.
House Bill 1939 would require an annual update to the home and community-based fee schedule rates for DSPs. Beginning Oct. 1, 2026, rates would increase based on the change in the Consumer Price Index (CPI), an inflation indicator, to the extent funding is available. The bill would supplement the state's existing requirement that the DHS conduct a broader review of the rates every three years.
The legislation also ties those reimbursement increases to DSP wages. When DHS increases reimbursement rates to account for inflation, providers would be required to increase DSP wages by the same CPI-based percentage. Providers also could not pay DSPs below a minimum rate established by DHS.
Beginning in 2027, providers that fail to meet the wage requirements could face fines and would be required to annually report staffing, wage and compensation data to the department.
"DHS is supportive of HB 1939 because it would improve predictability, sustainability and transparency in funding for home and community-based services funded through [the Office of Developmental Programs]. These services are essential to helping Pennsylvanians with intellectual disabilities and autism live in their communities," said Kristin Ahrens, deputy secretary for the Office of Developmental Programs in the Department of Human Services. "The bill also includes key provisions to improve wages for direct care workers, which would help address one of the most critical challenges facing the system: hiring and retaining DSPs."
Parents of children with intellectual disabilities and autism said they also support the legislation. Baumann said HB 1939 could help ensure DSPs receive wages that keep pace with inflation, helping create a stable, qualified workforce and ensuring caregivers can remain financially secure while providing high-quality care.
"This is hard work, just ask any parent who is forced to fill in the service gaps when agency after agency tells them they can't accept their child for services because they just don't have the staff," Baumann said. "Providing a pathway for providers to adequately compensate DSPs so that they remain financially stable and can show up to do this important work is an essential part of the equation."