Gary Blumenthal
For some, June heralds the joys of summer, warmth, sunshine and relaxed days, but for families of individuals with intellectual disabilities and/or autism (ID/A) and direct support professionals (DSPs), it is a month of growing anxiety as to whether the Pennsylvania General Assembly will finally pass Governor Josh Shapiro’s FY 24/25 budget.
This Budget is vital to the wellbeing of thousands of people and aims to address long-standing funding shortfalls that have left the disability community in crisis.
The Jennings family is a heartbreaking example of the hardships many face every day. Cindy Jennings, along with her son, Matthew, and her mother, Judy, have become de facto caregivers due to a shortage of DSPs willing to work at the current inadequate rates. Their story is a testament to the human impact of the systemic flaws that have plagued our state for decades.
Due to a funding shortfall in the ID/A program, there are more than 6,000 people on the waiting list, each with dire and critical needs.
These people have been determined to be eligible for immediate services and assistance, but remain in limbo because the state cannot provide adequate funding and support for the services they need.
The Department of Human Resources Services (DHS) and the Office of Developmental Programs (ODP) have never been adequately funded to meet the needs of individuals who qualify under state and federal regulations.
This crisis is exacerbated by inadequate wages paid to DSPs, making it nearly impossible to recruit and retain the expertise needed to provide essential services. Many DSPs earn wages comparable to unskilled workers, despite the rigors of the job, including extensive training and the ability to perform life-saving measures. As a result, provider programs experience turnover rates that often exceed 30-40%, with vacancies spiking to 80% during the pandemic.
Governor Shapiro, along with Secretary of Homeland Security Dr. Val Arkoosh, has been touring the state meeting with families, advocates, providers and lawmakers to garner support for a proposed $217 million investment in DSP wage increases and an additional $34 million to begin a five-year plan to eliminate wait lists.
The Governor’s commitment to update the data used to set rates for home and community-based health care services (HCBS) is an important step in addressing this crisis.
The ID/A budget request has bipartisan support.
On behalf of InVision Human Services, I have met with both Republicans and Democrats. These elected officials understand that this is a powerful human need, and I have heard calls from their constituents, regardless of party, to support this proposition.
The story of the Shaffer family further underscores the urgency of this issue.
Sandy Shaffer, Kate’s intellectually disabled mother, was forced to give up her career and dip into her retirement savings to provide care that the state doesn’t cover. Although Kate is eligible for more than 65 hours of support per week, a lack of available DSP means Sandy struggles to balance caregiving with part-time work.
This is not an isolated incident, but a common story among families across the Commonwealth.
Governor Shapiro’s budget request offers a ray of hope for these families. It is a bold step toward ensuring that people with intellectual and learning disabilities have the supports they need to live fulfilling lives in their communities. But this must not be a one-time solution. Sustainable funding, adjusted annually for inflation, is essential to prevent future crises and ensure stability for these critical services.
As a former legislator and federal disability official, I urge the Pennsylvania Legislature to support Governor Shapiro’s ID/A budget request. The lives of thousands of people with disabilities and their families depend on it. Let’s work together to create a more inclusive and compassionate Pennsylvania where all individuals can thrive, regardless of ability.
Our families are exhausted, but we remain hopeful that this time our voices will be heard and meaningful action will be taken. Now is the time for bipartisan support and decisive action.
Gary Blumenthal, a former member of the Kansas House of Representatives and a former federal disability official in the Clinton and Obama administrations, is currently vice president of InVision Human Services in Wexford and Reading, Pennsylvania.