‘The Collapse is Here’: Individuals with ID/A, Families & Providers Rally in Harrisburg for Increased Funding

With the system of care for individuals with intellectual disabilities and autism (ID/A) on the verge of total collapse, advocates and providers rallied at the Pennsylvania Capitol to urge the General Assembly to restore proposed aid by$170 million.

Providers told those assembled in the Capitol rotunda that nearly 60,000 Pennsylvanians are at risk because there are not enough direct support professionals (DSPs) to care for them. Advocates pressed lawmakers to restore the $170 million in funding to invest into fee schedule rates to support DSPs and services.

“For over a decade, we have been warning that the ID/A system is in danger of falling apart as families have been burdened with around-the-clock care for their loved ones,” said Sherri Landis, Executive Director of The Arc Pennsylvania. “The collapse is here. The only way to fix this issue is for appropriate funding and support from the state.”

“Across the state, we are seeing that there is insufficient staff to meet needs or no staff at all,” said Richard S. Edley, PhD, Rehabilitation & Community Providers Association president and CEO. “DSPs are overworked and depleted and have compromised their own health to serve individuals with ID/A. Program closures have eliminated essential services and also affected the health of individuals served. Underfunding a system where individuals and families are already waiting for or losing needed services simply compounds a dire situation. We need to come together to help those in need.”

DSPs manage complex and chronic health conditions, and responsibilities may include
administering medication, implementing treatment plans, and supporting and ensuring mental health and essential care daily.

“Our DSPs provide care through a lifetime,” said Patrick DeMico of The Provider Alliance. “They have worked too hard with too little state support. It’s time that changes, and that the state restore funding to support our DSPs and free our families and individuals from this burden.”

“Without an increase to the fee schedule rates, the spiral will continue and thousands more will go unserved,” said Cherie Brummans, The Alliance of Community Service Providers executive director. “No one should have to be forced between choosing caring for a loved one and their financial stability. Unfortunately, that’s what the state has done by cutting this funding.”

Advocates and providers said they hope that lawmakers restore the funding, and that they fear what will happen if funding is left out.

“Without an increase to fee schedule rates, the spiral will continue and thousands more will go unserved,” said Mark Davis, PAR president and CEO. “Let’s make the 2023-24 budget the one that gives our DSPs, families and individuals some relief.”