For years, Pennsylvania's intellectual disability and autism (ID/A) provider community has demanded real help from lawmakers to provide more resources for home and community-based providers to ensure adults with ID/A and autism receive the services they need to live as independently as possible in their communities among family and friends. The provider community has also advocated for increases in reimbursement rates that would allow us to raise the wages for direct support professionals (DSPs) which will help address the shortage of DSPs across the state and pay our DSPs a living wage they deserve.

The recent passage of the state budget for the fiscal year 2024-2025 is an important step by lawmakers for the ID/A community. But it is just that — a step. The ID/A community has endured years of systemic underfunding and unreimbursed care costs, resulting in a workforce crisis and the closure of services and providers. Recent statewide studies, amongst providers of ID/A services, reflected a 20% employment vacancy in DSP staff, greatly impacting the quantity and quality of the services providers deliver. It is hoped that the increase in funding will allow providers to more adequately compensate DSPs, thereby hiring and retaining additional DSP staff and reducing the service waitlist. There are currently 4,500 Pennsylvanians on the emergency wait list for services.

Governor Shapiro recognized the underfunding and the risk to the ID/A community and proposed a $480 million budget for the system for FY 24-25. His proposal showed true leadership and a commitment to individuals with disabilities across the Commonwealth. However, Pennsylvania's budget, with bipartisan support, included only $354.8 million in new funding, approximately a 25% decrease from the Governor's proposal for the sector. This investment fails to resolve the ID/A system's fiscal issues. Although this progress appears significant, there is still more work to be done — a budgeted annual increase that allows for future sustainability.

A major issue for the ID/A system is that the reimbursement rates are, by regulation, only evaluated every three years. This means the rates today will be in place until July 2027 and will not be adjusted for inflation.

We call on Governor Shapiro and state lawmakers to commit to a yearly rate-setting process that keeps program funding consistent with inflationary costs and market demands. There's a long way to go. The industry has been overlooked and underfunded for a long time, leading to system issues that need urgent attention.

Our founder, Dr. Gertrude Barber, thrust the ID/A sector into the national, state, regional and local governmental spotlight with countless advocacy and legislative committee appointments. She was a trusted advisor and voice to President John F. Kennedy and numerous Pennsylvania governors to improve the quality of life for persons with ID/A. It is now our responsibility to keep the ID/A community in the spotlight to ensure that the most vulnerable receive the best services.

We won't give up. We will continue to pursue the necessary reforms to the system on behalf of the most vulnerable Pennsylvanians and know that with determination, faith and a willingness to take risks will, in the end, prove that mountains can be climbed.

Robert Barber, Barber National Institute senior vice president, has administrative responsibility for intellectual disability services, behavioral health services, facilities, and fleet management. Patrick Barber, Barber National Institute senior vice president, has administrative responsibility for information technology, finance, human resources and governance, risk management and compliance.The Barber National Institute provides children and adults with autism, intellectual disabilities, and behavioral health challenges and their families the education, support, and resources needed to be self-reliant, independent, and valued members of their community. In addition, we provide the professionals who serve them with education and training. Its Elizabeth Lee Black School is a nationally recognized school of excellence that serves a very diverse group of learners. The Barber National Institute serves more than 5,400 individuals statewide with offices in Erie County, Pittsburgh, Somerset, Bedford and Philadelphia. The Barber National Institute employs over 3,000 people and was founded in 1952 by Dr. Gertrude Barber.