In picture, from right, Cindy Smith Jennings, 60 year old mom of Matt Jennings who has ID/A and needs 24/7 supports and his grandma, Judy Smith, at age 86; both Judy and Cindy struggle to provide support for Matt because they can’t find anyone to work for the state set rate for DSPs.  They met with Governor Josh Shapiro and helped him understand the ID/A crisis and its impact on families.

By Gary Blumenthal, vice president of InVision Human Services and former state legislator and disability advisor during the Clinton and Obama Administrations 

Supporting individuals with Intellectual Disabilities and Autism (ID/A) and their dedicated workforce is not just a matter of policy; it’s a moral imperative that transcends political lines. In Governor Josh Shapiro’s recent budget address, he recognized this truth and took decisive action to address the long-standing crisis facing these individuals and their families. His commitment to allocate $216 million, which leverages an additional $266 million in federal funds, to bolster home and community-based services marks a historic moment in Pennsylvania’s dedication to this vulnerable population.

Behind these numbers lies the heart-wrenching story of Cindy Jennings, her son Matthew, and her mother Judy. Cindy and Judy’s daily struggles to care for Matthew, who requires round-the-clock support due to his disabilities, epitomize the challenges faced by so many families across our state. Unable to find a direct support professional (DSP) willing to work for the rates paid in Pennsylvania, Cindy and Judy have taken on the responsibilities themselves, becoming de facto caregivers in their own home.

When Governor Shapiro brought up the Jennings family in his address, it was because he was deeply moved by the challenges they face every day. He understands that Cindy’s concerns are not isolated. They are shared by thousands of other families across the Commonwealth who are similarly struggling to find adequate care and support for their loved ones.

Cindy, Matthew, and Judy’s story underscores the urgent need for change. It highlights the human impact of inadequate funding and low wages for DSPs, as well as the systemic failures that have left so many individuals with ID/A languishing on waiting lists for essential services.

As someone intimately familiar with the challenges faced by individuals with disabilities and their families, I commend Governor Shapiro for his bold leadership on this critical issue. His recognition of the inherent dignity and worth of every individual, regardless of ability, sets a powerful example for lawmakers on both sides of the aisle.

Indeed, disability issues are not confined to any one political ideology. They touch the lives of Republicans and Democrats alike, reminding us of our shared humanity and collective responsibility to ensure that every individual has access to the support and services they need to thrive.

I am hopeful that the General Assembly will heed the Governor’s call to action and prioritize funding for ID/A services in the upcoming budget deliberations. The nearly 6,000 individuals languishing on emergency waiting lists cannot afford further delay or indifference. It is incumbent upon our elected representatives to stand together in support of this vulnerable population and uphold our commitment to a more inclusive and compassionate Pennsylvania.

While Governor Shapiro has set a bold vision for addressing the immediate needs of the ID/A community, it is essential that we also plan for the long term. Sustainable funding, coupled with annual rate adjustments to keep pace with inflation, is crucial to preventing future crises and ensuring the stability of vital support services.

As we embark on this journey toward a more equitable and inclusive society, let us remember the words of Governor Shapiro: “Imagine if this was your kid.” Let us channel our empathy into action and work together across party lines to build a brighter future for all Pennsylvanians, regardless of ability.