Opinion: Families of disabled anxious as budget discussions begin

As Pennsylvania budget discussion begins, families of individuals with Intellectual Disabilities/Autism (ID/A) and Direct Support Professionals (DSPs) in Pennsylvania are anxiously awaiting the General Assembly’s decision on Governor Josh Shapiro’s FY 24/25 budget which aims to address critical underfunding and improve support services.

This op-ed was first published in the Patriot News. 

For some, June heralds the joys of summer, a season of warmth, sunshine, and leisurely days. But for families of individuals with Intellectual Disabilities/Autism (ID/A) and Direct Support Professionals (DSPs), it’s a month of heightened anxiety, wondering if the Pennsylvania General Assembly will finally pass Governor Josh Shapiro’s FY 24/25 budget. This budget, crucial for the well-being of thousands, seeks to address years of underfunding that have left the disability community in a state of crisis.

The Jennings family is a poignant example of the daily struggles faced by many. Cindy Jennings, along with her son Matthew and her mother Judy, have become de facto caregivers due to the lack of DSPs willing to work for the current, inadequate rates. Their story is a testament to the human impact of systemic failures that have plagued our state for decades.

The underfunding of ID/A programs has resulted in a waiting list of over 6,000 individuals, each with dire and critical needs. These individuals have been determined eligible for immediate services and supports, yet remain in limbo due to the state’s inability to adequately fund and support the necessary services. The Department of Human Services (DHS) and the Office of Developmental Programs (ODP) have never been fully funded to meet the needs of eligible individuals under state and federal regulations.

This crisis is exacerbated by the insufficient wages paid to DSPs, making it nearly impossible to recruit and retain the professionals needed to deliver essential services. Many DSPs earn wages comparable to those in unskilled jobs, despite the demanding nature of their work, which includes extensive training and the ability to perform life-saving measures. Consequently, turnover rates in provider programs often exceed 30-40%, with vacancy rates soaring to 80% during the pandemic.

Governor Shapiro, along with DHS Secretary Dr. Val Arkoosh, has traveled the state, meeting with families, advocates, providers, and legislators to garner support for the proposed $217 million investment in raising DSP wages and an additional $34 million to begin a five-year plan to eliminate the waiting list. The Governor’s commitment to updating the data used to set rates for home and community-based services (HCBS) marks a significant step towards addressing this crisis.

There is bi-partisan support for the ID/A budget request.  On behalf of InVision Human Services, I have met with both Republicans and Democrats.  These elected officials understand this is a strong human need and regardless of party have heard from their constituents urging their support for this proposal.

The story of the Shaffer family further underscores the urgency of this matter. Sandi Shaffer, mother to Kate, an individual with an intellectual disability, has been forced to give up her career and dip into her retirement savings to provide the care that the state has failed to support. Despite Kate qualifying for over 65 hours of support per week, the lack of available DSPs has left Sandi struggling to balance caregiving with part-time jobs. This is not an isolated incident but a common narrative among families across the Commonwealth.

Governor Shapiro’s budget request offers a glimmer of hope for these families. It is a bold step towards ensuring that individuals with ID/A receive the support they need to live fulfilling lives within their communities. However, this should not be a one-time fix. Sustainable funding, with annual adjustments to keep pace with inflation, is essential to prevent future crises and ensure the stability of these vital services.

As a former legislator and federal disability official, I urge the Pennsylvania General Assembly to support Governor Shapiro’s ID/A budget request. The lives of thousands of individuals with disabilities and their families depend on it. Let us work together to create a more inclusive and compassionate Pennsylvania, where every individual, regardless of ability, can thrive.

Our families are exhausted, but they remain hopeful that this time, their voices will be heard, and meaningful action will be taken. The time for bipartisan support and decisive action is now.