The Children's Medicaid Defense Project is seeking to establish a family action network to help with responding to issues that may come up with pending Medicaid cuts and to educate policymakers and other stakeholders on how essential Medicaid is to supporting wellness and family life for children with developmental disabilities and/or complex medical needs.

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For Family Members of Children with Developmental Disabilities and/or Complex Medical Needs

CHILDREN WITH DISABILITIES IMPACT ALERTS!!!

CHILDREN WITH DEVELOPMENTAL DISABILITIES IMPACT ALERT

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

February 21, 2026
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. To learn more, click here.

IMPACT ALERT: 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 WITH DISABILITIES IMPACT ALERT: CHILDREN’S BEHAVIORAL HEALTH SERVICES

February 13, 2026

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.  To learn more, click here.

STATE BUDGET WILL IMPACT CHILDREN’S IN-HOME SERVICES IT’S TIME TO BE HEARD

February 4, 2026

WHY YOU SHOULD CARE ABOUT THE STATE BUDGET

Medicaid (Medical Assistance/MA) funds a variety of services that support family life for children with disabilities. These include in-home nursing, home health aides, medical equipment, special education related services, and behavior supports. (See our Impact Alerts below for more information on those services) About half of the funds for Medicaid-covered services come from the state and the state funds dedicated determine the amount of federal Medicaid funds the state will draw down. The amount of those funds is set in the state budget.  If the state budget doesn’t provide enough money for the services children will need during the coming state budget year (July 2026-June 2027), the state Medicaid agency and its contracted Medicaid Managed Care Organizations will be under intense pressure to reduce costs. One way the Medicaid Managed Care Organizations are likely to reduce costs is to reduce the number of hours of home health or behavioral health services they approve. We are seeing that now. The other way Medicaid Managed Care Organizations can cut costs is to reduce payments to providers which can result in some providers no longer accepting Medicaid.  So, the amount of money the Governor and the state legislators put into the state budget for Medicaid impacts the ability of children to get the amount of services they need to remain at home with their families. This makes it critical that families use this key time to educate their state officials about the full extent of their children’s service and support needs. To learn more, click here.

MEDICAID AND CHILDREN’S DISABILITY EQUIPMENT

December 22, 2025

Thankfully, Medicaid provides the funding for the equipment that allows children and youth with physical and medical disabilities to live and thrive in their homes and communities. In addition, children who are also enrolled in certain Medicaid home and community-based service waiver programs, such as the Consolidated or Community Living waivers, can receive home and vehicle modifications to accommodate their equipment, such as widened doorways, van modifications, accessible showers, etc. To learn more, click here.

GETTING TO YES: WHAT TO DO WHEN YOUR CHILD’S MEDICAL ASSISTANCE INSURER DENIES OR REDUCES SERVICES

December 12, 2025

THE PROBLEM

Most children on Medical Assistance (also called Medicaid or just MA) are enrolled in Managed Care Organizations (“MCOs”) --one for medical care and another for behavioral services. (See our summaries of each system at www.imaginedifferent.org/medicaiddefense.) These MCOs get to determine the amount of services for which they will pay. Some of these MCOs appear to be preparing for the upcoming cuts to federal funding by reducing the amount of services they approve.

PHONE CALLS NOT ENOUGH

Most people’s inclination when finding out their child has had their services reduced or terminated is to call the MCO. However, if you rely on phone calls alone, you may lose important rights that can help you get your child’s services back. To learn more, click here.

MEDICAID ENABLES FAMILY LIFE FOR CHILDREN WITH COMPLEX DISABILITIES THROUGH “LIFESHARING”

December 5, 2025

The federal Medicaid (or MA) program gives states an option to provide disability-related home and community-based services (HCBS) that would not otherwise be covered by the MA program to individuals who, without these additional services, would need to live in institutions. All states provide some version of community-based services. While Pennsylvania’s HCBS waivers primarily serve adults, we do have several HCBS waivers that can cover children with certain developmental disabilities including: medical complexity, intellectual disability, autism, and developmental delay in young children that will likely result in a diagnosis of intellectual disability or autism. One of the services that can be offered to children (and adults) is called Life Sharing. To learn more, click here.

MEDICAID (MA) PAYS FOR MUCH NEEDED IN-HOME NURSES AND AIDES FOR THOUSANDS OF PENNSYLVANIA’S CHILDREN

December 5, 2025

Under federal law, children enrolled in Medicaid, also known as Medical Assistance (MA), have a legal right to receive medically necessary services at no cost to their families.  For children who have medical conditions, these services include nurses and aides who make it possible for them to live full lives with their families, friends, and loved ones in their homes, schools, and communities. Every year, across our Commonwealth, thousands of children with medical and developmental needs are determined, by their doctors and Medicaid-funded health plans, to need these home health services. Some have respiratory conditions requiring a tracheostomy and/or ventilator for breathing. Some have gastrointestinal conditions requiring feeding tubes. Others have conditions such as Muscular Dystrophy, Cerebral Palsy, severe asthma, diabetes, epilepsy, intellectual disability, and the list goes on.   To learn more, click here.

THE RELATIONSHIP BETWEEN MEDICAID AND FAMILY LIFE FOR CHILDREN WITH DISABILITIES

November 24, 2025

Introduction

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, fortunately, has been able to fill in 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. Preserving this safety net for children requires certain provisions of Title XIX of the Social Security Act (Medicaid) to be adequately funded – specifically, Early and Periodic Screening, Diagnostic, and Treatment services, or EPSDT, defined at 42 USC § 1396d(r), and Home and Community-Based Services (HCBS), defined at 42 USC § 1396n(c). To learn more, click here.

MEDICAID--WHAT’S IN A NAME?

November 5, 2025

Sometimes it’s called MA, or Medical Assistance. Sometimes it’s called ACCESS. Sometimes it’s referred to by one or more of seven health plan names. Is it any wonder it’s confusing? Medicaid, known in Pennsylvania as Medical Assistance or MA, provides a free and comprehensive package of healthcare services to children with disabilities. Most of these children receive their services through managed health care plans that contract with the state. To learn more, click here.

GOVERNMENT SHUTDOWN AND HEALTHCARE

October 6, 2025

On October 1st, the federal government is set to shut down many of its operations due to the failure of Congress to pass a budget bill. The impasse is a result of a profoundly important dispute over the funding of healthcare. Republicans recently voted to cut hundreds of billions of dollars from the Medicaid Program, to end eligibility for many, and to end federal subsidies that currently make healthcare affordable for low- and middle-income families through the Healthcare Marketplace (Obamacare). Democrats are insisting that these programs be reinstated and funding be provided for them in any new budget. To learn more, click here.