By Nancy Murray, M.S., president of The Arc of Greater Pittsburgh and senior vice president of Achieva. She also serves as chair of The Provider Alliance’s Government Affairs Committee, and she is the mother of adult children with ID/A. 

The PA House has passed a budget that includes a $170 million CUT to intellectual disability/autism (ID/A) services. Unfortunately, many in the legislature see this as a “savings” because the amount being cut equals the amount not spent in the previous fiscal year.

However, the REASON it wasn’t spent was because providers of services to people with ID/A receive rates that do not allow them to hire skilled direct support professionals (DSPs) to care for people in the ID/A community.

What we need is for that $170 million to be kept in the budget and allocated to the fee schedule rates for DSPs. That would be a win-win for tens of thousands of Pennsylvanians who have ID/A, their families, and the DSPs who support them.

Without the necessary funding, the ID/A system will continue to collapse.  

Throughout Pennsylvania, families have poured their hearts out to legislators, sharing deeply personal stories about their lives, their families, and their fears for the future. They live in a constant state of quiet desperation, as moms, dads, siblings, and grandparents provide care well into their 80s, supporting adult children with ID/A.

More than 5,600 families are in the Emergency Need category. This means that the state is fully aware of their desperation and crisis, yet there is no guarantee that the necessary services will be provided. The state has failed to meet the requests for services from thousands of individuals with intellectual disabilities and autism due to the broken and collapsing system that has been highlighted in the media and at the Capitol for the last several years. All these families ask is to know that their loved ones will receive the essential life-sustaining services they have been found eligible to receive by the Office of Developmental Programs.

The General Assembly has the power to rectify this crisis. The ID/A community has already endured enough suffering. It is time to step up, listen to the cries of families, and take immediate action to restore funding for ID/A programs. Please do not allow another day to pass without restoring the $170 million into fee schedule rates and to stop the collapse of this desperately needed system of services for some of the state’s most vulnerable people and families.