By CHRISTINA LENGYEL

The Center Square

HARRISBURG – Pennsylvanians with intellectual and developmental disabilities gathered with advocates in the Capitol on Monday to urge lawmakers to preserve Medicaid from proposed spending cuts at the federal level.

In particular, the group spoke out about the importance of home and community-based supports that allow many disabled people to remain independent rather than receiving care in an institutional setting.

“Without strong funding commitments, people with disabilities and the caregivers, providers, and communities that support them stand to lose the most,” said Francine Hogan, director of the nonprofit Vision for Equality.

The Congressional Budget Office projects a decrease of more than 7 million people in Medicaid enrollment along with an estimated $723 billion in spending on the program if the bill passes in its current form. Senate changes, however, are expected by both President Donald Trump and many politicos.

Republicans who support the bill say that the cuts are aimed at people who are taking advantage of the system by creating additional work requirements and repealing Biden-era rules that increased access to a broader group of people.

The thousands within the commonwealth’s disabled community largely rely on waivers received from Medicaid to access services like physical and occupational therapy, learning support, and even job training.

Nicolette Fenello says she was the first person with intellectual and developmental disabilities in her Pittsburgharea school to be fully integrated into a regular classroom and later to live on campus attending Slippery Rock University. For Fenello, Medicaid made the difference. She has been supported to work in childcare for the past five years, live independently, navigate her neighborhood, and manage bills and finances.

“Life would look drastically different, and I would currently not be successful in employment or independent living if these services including my transportation and working with my house aide were taken away,’ Fenello said. ‘All that I have worked hard to achieve in my life would be affected.”

Even with Medicaid operating at its current level, many wait months and even years to access the services they need within the state. As of February of this year, there were 11,711 people with intellectual and developmental disabilities or autism on the waiting list for the Pennsylvania Office of Developmental Programs.

Advocates say the waitlists will only get longer if less funding flows in from the federal government. State Democrats have pushed for raising the reimbursement rate for caregivers in order to draw more people toward jobs in home and community- based services.

Ernie Roundtree offered his experience, spending years on a waitlist before receiving an aide.

“She’s taken me places that I have never been to before, and we are still discoverering together,” said Roundtree of his support professional. “It also helped me with transportation to get back and forth to work, which I love very much. I’m passionate about people with disabilities. If they take away Medicaid and Medicare, my life will be not the same, and I will be lost, and I will have to start over again.”

For those who need supports to be able to maintain independence, the stakes couldn’t be higher. While self-advocate Jean Searle recounted the harrowing experience of having her child taken from her and put up for adoption after giving birth in an institution, other individuals in the crowd shook their heads, one crying, “I don’t like those places.”

According to the Pennsylvania Waiting List Campaign, within state institutions, the cost for care exceeds $600,000 annually per person. Using home and community waiver services costs an average of just less than $120,000 per person. Through waivers, the state serves more than 41,000 individuals, with only 435 currently requiring institutionalization.

Vision for Equality stresses the importance of Medicaid to the state’s overall economic stability, linking it to 1 in 9 jobs and over $186.5 billion.

Still, senators advocating against the cuts say that it’s about dignity and caring for each other, not economics.

“How incredible you are doing this work, coming to the Capitol, being a self-advocate of any kind, sharing your stories, perhaps your trauma,” said Sen. Amanda Cappelletti, D-Norristown. “None of that is easy, and I am sorry that our society sets you up and expects that you do that in order for us to get there.”