Pennsylvanians with Intellectual Disabilities & Autism, Their Families, and the Providers who Deliver Essential Care and Services Are in Crisis.
- Due to insufficient rates set by the Office of Developmental Programs (ODP), providers of intellectual disability and autism (ID/A) services cannot recruit and retain a sufficient number of Direct Support Professionals (DSPs) to care for people with ID/A.
- Nearly 60,000 Pennsylvanians are at risk of losing essential services because there are not enough DSPs to care for them.
- Pennsylvanians with complex needs and multiple diagnoses are at even greater risk due to the DSP shortage. DSPs who support them require greater training and operate in a higher risk environment.
- ID/A is funded through a single-payer system with Medicaid dollars administered by the Commonwealth. There are no additional resources available to support community ID/A services.
- Underinvestment in community services has resulted in reduced capacity and has placed tremendous strain on individuals, families, and ID/A providers who are unable to offer competitive wages to retain and attract DSPs.
- People who lost their services during the pandemic, particularly those in day or employment programs, continue to go without services and are being cared for by parents or other family caregivers.
- Many families must provide 24/7 care for their adult children, many of whom have significant medical and/or behavioral issues.
- This includes elderly parents who are physically or emotionally unable to provide this care without risking their own health and safety.
- A growing number of family caregivers are quitting their jobs to provide care and are losing their homes, health care, and retirement savings. Families have become the safety net, and this is not sustainable.
- More than 12,000 people remain on the Pennsylvania waiting list for ID/A services. Of these individuals 5,400 individuals are categorized as Emergency Need, indicating they are at risk and require services immediately.
- Low wages, high turnover, and the economic impact of DSP underinvestment disproportionately affects female and minority workers, as they comprise the majority of the DSP workforce.
To End the ID/A Crisis, the Commonwealth must:
- Invest no less than $430 million in 2023-24 state general fund dollars for ID/A community services (all of which will qualify for federal matching funds) to correct previous omissions and underinvestment that have ignored inflation and other market- based indicators.
- Preserve the Home and Community Based Services for Individuals with Intellectual Disabilities Augmentation Account in the current Fiscal Code, that will ensure funds committed to Pennsylvania’s remaining state centers (currently $132.5 million in state funds), and any proceeds from their liquidation, remain in the community ID/A system.
Revised: January 19, 2022