TIPS FOR FAMILIES WANTING TO TALK TO THEIR LEGISLATORS

May 20, 2026

Identify the legislators (House & Senate) in whose district you live- Legislators are more responsive to voters who live in their district (“constituents”).

To learn more, click 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.  To learn more, click here. 

PAYING FAMILY CAREGIVERS ATTACKED BY TOP US ADMINISTRATION OFFICIAL

May 8, 2026

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. To learn more, click here.


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 & WAIVERS WHILE CUTS LOOM

April 21, 2026

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. To learn more, click here.

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 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

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.

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.