Children’s Medicaid Defense Project
Helping Pennsylvania families understand how Medicaid supports children with disabilities, what proposed changes could mean, and how families can speak up.
Medicaid helps children receive care and support at home, at school, and in their communities. The Children’s Medicaid Defense Project shares updates, family experiences and ways families can respond when Medicaid services may be affected.
The project is also building a family action network to help policymakers understand what Medicaid makes possible and what families could lose when services are reduced.
Family stories
Families across Pennsylvania are sharing how Medicaid-funded services support their children’s health, safety, independence, and ability to live at home.
Kelly and Nate’s Story
Kelly shares how Medicaid-funded services support Nate’s health, safety, and ability to live at home—and what losing those services could mean for their family. Watch their story here
Have a Medicaid story to share?
Latest News
FAMILIES AND PROVIDERS SPEAK TO PENNSYLVANIA LAWMAKERS
On June 9, 2026, parents, home-care providers, and Medicaid organizations spoke to the Pennsylvania House Human Services Committee about Complex Care Assistant programs and proposals to pay trained family members for providing approved care at home. The panelists were the following:
Panel 1 - Meghann Luczkowski (parent), Hannah Brown (parent),
Panel 2 - Deanna Pack (Area Director of Clinical Services/Administrator, 365 Health Services, LLC.), Bill Sczepanski (Executive Vice President of Public Policy and Government Relations, Team Select Home Care), Michele Werner (RNC, BSN Regional Director of Regulatory and Government Affairs, Angels of Care Pediatric Home Health)
Panel 3 - Emily Katz (MPH Executive Director, PA Medicaid Managed Care Organizations PAMCO).
You can read the committee materials here or watch the entire hearing can be found here.
CRITICAL CONVERSATION: HOW MEDICAID CUTS COULD AFFECT FAMILIES
The Children’s Medicaid Defense Project and Vision for Equality discuss how Medicaid cuts could affect children and adults with developmental disabilities or complex medical needs and what families and self-advocates can do to prepare.
Featured speakers:
Meghann Luczkowski - Imagine Different Coalition, Francine Hogan - Vision for Equality, Dr. Josie Badger - J Badger Consulting, Erin Gabriel - PA Health Access Network, Erin Guay (Co-Director) - PA Health Law Project, David Gates Esq. - Imagine Different Coalition
browse the full collection for Medicaid updates, family resources, and ways to take action.
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WHY MEDICAID MATTERS
Most children with disabilities need medical care, therapies, or equipment–often all three–to thrive. For some, without these services provided in their homes, they are forced to grow up in facilities, away from their families and communities. Private insurance, even when affordable, provides only very limited coverage for the needs of the most vulnerable children. Medicaid (also called Medical Assistance or “MA”), fortunately, has been able to fill many of the gaps. While staff shortages have still left too many children without needed care, Medicaid has enabled family life for hundreds, if not thousands, of Pennsylvania children. Federal cuts to the Medicaid program endanger the availability of these necessary services.
Children receive Medicaid services primarily through the MA benefit for children known as EPSDT. Additional services can be funded through Home and Community-Based Service (HCBS) waivers. As a result of the EPSDT benefit, more than 6000 children, on any given day, receive medically necessary home health services (nurses or aides) at home or at school, enabling children to live in a family home while their parents go to work, support their families, and pay taxes. Children and teenagers who use wheelchairs have been provided equipment that enables them to get in and out of their homes--to get to school, play in the neighborhood, or exit in an emergency–without being carried, or crawling, up and down steps. Young children with autism have received early, evidence-based treatments that result in improved functioning throughout their lives. And these are just examples of services that are the direct result of the EPSDT benefit. A few fortunate children also receive services from HCBS waivers including home modifications such as widening doorways for wheelchair access, respite aides or nurses when parents need a break, community or alternate family homes when parents are unable to provide the extraordinary care their child needs due, for example, to their own health conditions or disabilities.
While HR 1, the 2025 bill that drastically cut Medicaid funds, does not specifically target these programs, it leaves Pennsylvania in the untenable position of finding a way to make up billions of dollars of losses to its MA program. HCBS programs are optional for states, making them an obvious target for state cuts. And while EPSDT is a mandatory program, states and their managed care contractors control the rates paid for services and the service authorization criteria and mechanisms. We are already seeing a substantial increase in denials of service requests. A shortage of staff for key services has been a long-standing problem that must be addressed by, among other things, rate increases—not rate cuts. Hopefully, the state will realize that, to the extent that cuts to these programs would result in institutional placements, the savings would likely be eaten up by the costs of institutional care.
If you care about the availability of these services, now is the time to tell your legislators how and why they are important to you or to someone you care about.
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Identify the legislators (House & Senate) in whose district you live- Legislators are more responsive to voters who live in their district (“constituents”).
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SCHOOL-BASED ACCESS PROGRAM
Does your child receive special education or early intervention services and are they on a HealthChoices plan* or have Medical Assistance (Medicaid)?
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PENNSYLVANIA'S FAMILY FACILITATORS HELP INSTITUTIONALIZED CHILDREN ACCESS MEDICAID SERVICES AND OTHER RESOURCES NEEDED TO RETURN TO THEIR FAMILY HOMES
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Federal cuts to the Medicaid program endanger the availability of medically necessary services for children with disabilities.
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Does your child receive Intensive Behavioral Health Services (formerly “TSS” or “wraparound”) or other behavioral health services?
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CHILDREN WITH DISABILITIES IMPACT ALERT!!!
CAREGIVERS WITH INSURANCE THROUGH PENNIE LIKELY TO SEE HIGHER PREMIUMS WHEN REENROLLING