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!!!
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.
FEDERAL CUTS TO HEALTH INSURANCE PREMIUM SUBSIDIES MAY IMPAIR CHILDREN’S ACCESS TO CAREGIVERS
October 3, 2025
Getting and keeping qualified caregivers is critical to keeping children with developmental and medical disabilities in a family home rather than an institution. Health insurance is critical to recruiting and keeping those caregivers. For many caregivers, their only option for health insurance is through the “Marketplace,” also known as Pennie or the Affordable Care Act/“Obamacare.” To make the premiums for health insurance under marketplace health plans affordable, the Affordable Care Act provides subsidies for the cost of those premiums for individuals with incomes below a certain level. However, one of the many changes in the recent federal budget act (the “One Big Beautiful Bill Act or “OBBBA”) is the reduction of some of those premium subsidies. Discussions are currently underway in Congress as part of the federal budget negotiations to restore those cuts to the marketplace insurance premium subsidies. To learn more, click here.
For more on the impact of expiring enhanced premium tax credits on ACA marketplace premiums, click here for an article from the Kaiser Family Foundation (KFF).
MEDICAID FUNDING IS PART OF STATE BUDGET IMPASSE
October 1, 2025
The state constitution requires the PA legislature to pass a budget by July 1st of each year to fund state offices and programs for the next 12 months. It is now more than 120 days past the constitutionally mandated deadline but there is still no state budget for the current fiscal year. To learn more, click here.
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CHILDREN WITH DISABILITIES IMPACT ALERT!!!
CAREGIVERS WITH INSURANCE THROUGH PENNIE LIKELY TO SEE HIGHER PREMIUMS WHEN REENROLLING
Reductions in subsidies for Pennie (Marketplace) premiums will go into effect January 2026 unless Congress acts, but reenrollment starts November 1st. As Congressional leaders have failed to take action, both professional and family caregivers on Pennie will soon be getting reenrollment notices with the higher premium rates.
For more information, see PHAN’s statement at https://www.pahealthaccess.org/news/phan-statement-on-2026-pennie-monthly-cost-increase/ and this article from Politico:
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Does your child receive Intensive Behavioral Health Services (formerly “TSS” or “wraparound”) or other behavioral health services?
If their services are paid by one of the plans below, your child’s services may be reduced by federal Medicaid cuts:
Community Behavioral Health (CBH)
Community Care Behavioral Health (CCBHO)
Magellan Behavioral Health of PA (not Magellan employer-based plans)
Perform Care
Carelon Health
To learn more, click here.
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Federal cuts to the Medicaid program endanger the availability of medically necessary services for children with disabilities. To learn more, click here.
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PENNSYLVANIA'S FAMILY FACILITATORS HELP INSTITUTIONALIZED CHILDREN ACCESS MEDICAID SERVICES AND OTHER RESOURCES NEEDED TO RETURN TO THEIR FAMILY HOMES
More than 200 Pennsylvania children with complex medical needs are growing up in Pediatric Care Facilities (essentially, children's nursing homes). Many others are stuck in hospitals or other care facilities for months or years. These children haven't been able to access the medical, disability, housing, or social services they need to live at home with their families or in foster family homes. Most of the needed services could be funded by Medicaid, but planning and coordinating the services and the funding is complicated.
To read more, click here.
To view the In Brief, click here.
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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)?
If yes to both, your child’s school or Intermediate Unit (IU) may be receiving funds through Medical Assistance under a special program for some special education and early intervention services.**
These services include in-school nursing and personal care aides.***
The services for which school districts and IUs get Medical Assistance funds are in addition to any services your child receives outside of school paid for by the child’s HealthChoices plan or regular Medical Assistance.
Over half of Pennsylvania’s Medical Assistance (Medicaid) funds, including these special funds for schools and IUs, come from the federal government. Significant cuts to federal Medicaid funding are contained in a recent federal law--HR1. Unless Congress changes this law, these cuts will go into effect in the next three years. Pennsylvania doesn’t have the money to make up the loss of those federal funds so the state will have to reduce funding for some Medicaid programs--which may include this program which provides the additional funds to schools and IUs for special education and early intervention.
*The HealthChoices plans are: Amerihealth Caritas PA; Geisinger GHP Family; Health Partners Plans (not CHIP); Highmark Wholecare; Keystone First (not CHIP); United Healthcare Community Plan; and UPMC for You.
**The special program is called the “School-Based Access Program.” School districts and IUs are eligible to enroll and then bill a contractor for certain special education and early intervention services provided to students on HealthChoices/Medical Assistance as specified in the student’s IEP. The federal Medicaid match for those services is paid to the school district or IU which supplements the school district’s or IU’s other special education funds.
*** For a list of other services billable by school districts and IUs under the School-Based Access Program and other information on this program, go to this link.
To VIEW the In Brief, click here