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MEDICAID CUTS WILL HURT CHILDREN WITH DISABILITIES

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MEDICAID CUTS WILL HURT CHILDREN WITH DISABILITIES

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.

See our Impact Alert: How Medicaid Cuts Could Affect Children with Disabilities

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FB LIVE CRITICAL CONVERSATION: HOW MEDICAID CUTS COULD AFFECT FAMILIES

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Critical Conversations co- hosted by The Imagine Different Coalition and Vision for Equality had a conversation on 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. Streamed Live on Facebook on June 30th, 2026.

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

Watch it here

CHILDREN’S MEDICAID SERVICES UNDER ATTACK FROM FEDERAL AGENCY

PA’s Medicaid program funds vital in-home and community services for children with medical complexities and developmental disabilities, including in-home nursing, home health aides, behavioral aides and waivers. However, top officials with the federal agency that oversee Medicaid (CMS) and Members of Congress (especially the House Energy and Commerce  committee) are claiming that these Medicaid-funded in-home services are “rife with fraud,” especially when families are paid to provide care -- an allegation with which we strongly disagree. 

RFK Takes Issue with Medicaid paying family caregivers:

We believe that paying parents to provide approved medically necessary care is not fraud but essential to enable children with medical complexities and developmental disabilities to live with their families, attend school, and participate in their communities. The caregiving needed by these children is well beyond that needed for typically developing children. It is well established that there are not enough nurses and home health aides to fill the medically necessary shifts approved by Medicaid. Paying family members allows them to provide the exceptional level of care their children need and still pay their household bills. If you are a family member who is being paid to provide care by your child’s home health agency, we would like to hear from you.

WE WANT TO HEAR FROM YOU!!!!

If you are a family member who is being paid to provide care by your child’s home health agency, we would like to hear from you. Fill out a brief survey and we’ll be in touch!

Complete the Family Survey
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PAYING FAMILY CAREGIVERS ATTACKED BY TOP US ADMINISTRATION OFFICIAL

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CHILDREN WITH DISABILITIES IMPACT ALERT: PAYING FAMILY CAREGIVERS ATTACKED BY TOP US ADMINISTRATION OFFICIAl

Robert F. Kennedy Jr., head of the US Department of Health & Human Services, recently claimed that programs which pay family members to provide care for loved ones with disabilities, like PA’s Medicaid program, are “rife with fraud.”

We believe that paying parents to provide approved medically necessary care is not fraud but essential to enable children with medical complexities and developmental disabilities to live with their families, attend school, and participate in their communities. The caregiving needed by these children is well beyond that needed for typically developing children. It is well established that there are not enough nurses and home health aides to fill the medically necessary shifts approved by Medicaid. Paying family members allows them to provide the exceptional level of care their children need and still pay their household bills.

WE WANT TO HEAR FROM YOU!!!!

If you are a family member who is being paid to provide care by your child’s home health agency, we would like to hear from you. Fill out a brief survey and we’ll be in touch

Share Your Story Here

FEDS FOCUS ON FRAUD IN MEDICAID HOME CARE AND WAIVERS WHILE CUTS LOOM

As the debate over access to and affordability of health care intensifies in advance of the Congressional midterm elections, a coordinated effort is underway between members of the majority leadership of the US House and the federal Medicaid agency to turn attention from access and affordability to Medicaid fraud. Of particular concern to families of children who rely on Medicaid-funded home care and waivers is the focus of the federal fraud allegations on home care and waivers. Medicaid fraud is a serious problem that takes money away from services children need. Pennsylvania has recognized that and has been addressing it aggressively for some time.

Despite those successes, the US House Committee that is responsible for Medicaid legislation and oversight started an inquiry into potential Medicaid fraud in Pennsylvania involving home health, waivers, behavioral health, and some other Medicaid services without good reason. They have asked for a large number of reports and data from the Department of Human Services. At the same time, the federal agency that administers Medicaid (Centers for Medicare and Medicaid Services or CMS) has recently announced a new approach to fraud that will rely more heavily on options to pause or withhold significant amounts of federal funding in cases of potential fraud, which could have broad implications for Pennsylvania’s Medicaid program and the individuals that rely on it.

Read our Impact Alert: FEDS FOCUS ON FRAUD IN MEDICAID HOME CARE & WAIVERS WHILE CUTS LOOM

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FB LIVE CRITICAL CONVERSATIONS: HOW TO TALK TO YOUR LEGISLATORS.

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Critical Conversations co-hosted by Imagine Different Coalition and Vision for Equality had a conversation on, “How to talk with your legislators?” Streamed live on Monday, April 20, 2026 at 6:30 PM ET on FB Live. An informative conversation about how to engage with your elected state and federal legislators regarding the importance of Medicaid.

Featured Speakers

State Representative Dan Frankel

State Representative Joe Hohenstein

David Gates (attorney at law, Imagine Different Coalition)

Erin Gabriel (PHAN)

Tom Carasiti and Ned Whitehead (Vision for Equality)

Click here to watch

HOME AND COMMUNITY-BASED SERVICES (HCBS) WAIVERS: HOW AVAILABLE WILL THEY BE TO CHILDREN WITH DEVELOPMENTAL DISABILITIES?

Background:

For decades, the federal Medicaid program has assisted states in funding community-based disability services and supports for people with disabilities who, without such services, would need institutional care. States can choose who will be eligible and what services they will provide in these programs (referred to as “waiver” programs), and how many people they can afford to serve. Many of these programs have long waiting lists. This past summer, Congress cut billions of dollars from the Medicaid program. While federal law continues to allow states to use their more limited funds to run these community-based programs if they so choose, the severe cuts to Medicaid have made it necessary for states to consider cutting back on optional programs like waiver programs.

Since the 1980s, Pennsylvania has been using Medicaid funds to provide a wide range of waiver services to distinct subsets of the disability community. Some of these waiver programs, described below, have been available to children, to the extent that funds have allowed. Due to long waiting lists and a false belief that children can be fully served by other programs, children make up a very small percentage of the tens of thousands of people served. Still, for the small number of children included, the waivers provide incredibly important supports that are enabling these children to grow up in their family homes and communities.

Read our Impact Alert: HOME AND COMMUNITY-BASED SERVICES (HCBS) WAIVERS: HOW AVAILABLE WILL THEY BE TO CHILDREN WITH DEVELOPMENTAL DISABILITIES

IMPACT OF FEDERAL CUTS ON CHILDREN’S FINANCIAL ELIGIBILITY FOR MEDICAL ASSISTANCE

February 15, 2026

Many middle-class children with disabilities in Pennsylvania are enrolled in Medical Assistance (also known as Medicaid) and rely upon critical Medical Assistance-funded services that enable them to live and thrive in their homes and communities. As explained in our Impact Alerts on home health, medical equipment and behavioral health, Medical Assistance covers a wide range of services and supports for children with developmental disabilities and complex medical conditions, including services that are not covered by private insurance. For children who have private insurance, Medical Assistance also provides co-payments for hospital stays, surgeries, and other expensive treatments that many working families simply cannot afford. To learn more, click here.

CHILDREN’S BEHAVIORAL HEALTH SERVICES

In Pennsylvania, Medicaid, also called Medical Assistance (or MA), pays for tens of thousands of children to receive needed behavioral health services at no cost to their parents, and often in their own homes, schools, and communities. When behavioral health services are determined by a doctor and an MA health plan to be medically necessary, they may include outpatient therapy, in-home aides, behavior consultants, school or community aides, specialized autism treatment, medication management, residential treatment programs, acute care hospital stays, and more. The home and community-based services are called by different names, e.g., wraparound, Intensive Behavioral Health Services (IBHS), Applied Behavior Analysis (ABA), outpatient therapy, partial hospitalization, and so on.

If your child is receiving behavioral health services with no copayment or deductible, their services are most likely being funded, in full or in part, by Medicaid.  

Read our Impact Alert: CHILDREN’S BEHAVIORAL HEALTH SERVICES