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

CHILDREN WITH DISABILITIES IMPACT ALERT!!!

FEDERAL CUTS TO HEALTH INSURANCE PREMIUM SUBSIDIES MAY IMPAIR CHILDREN’S ACCESS TO CAREGIVERS

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.  Some paid caregivers will receive health insurance benefits through their employer. Some family caregivers will receive health insurance through their day job. Some may rely on Medicaid for their health coverage (a topic we will address in a future document.) However, for many other caregivers, both paid and unpaid, 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.

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. Insurance companies providing health insurance through the marketplace in PA have already requested approval by the PA Insurance Department of premium increases of 19% as a result of the cuts to premium subsidies.  The reduction in premium subsidies and resulting increases in cost of health insurance may make marketplace health insurance unaffordable for family members who do not have other sources of health insurance, forcing them to reduce or stop providing care to their family member in order to obtain health insurance through full-time paid employment.

This will also affect some paid caregivers who rely on marketplace insurance plans such as aides who provide supports to children and adults on the Consolidated, Community Living, and PFDS waivers and are paid through PPL as health insurance is not provided by PPL. 

While there are many other provisions in the OBBBA that will have significant impacts on care and support for children with developmental disabilities, the reduction of health insurance premiums for some of these children’s caregivers is one of the first cuts to go into effect. These cuts will go into effect in 2026.

Discussions are currently underway in Congress as part of the federal budget negotiations to restore those cuts to the marketplace insurance premium subsidies. The PA Insurance Commissioner said: “If Congress fails to renew critical enhanced premium tax credits and instead enacts barriers for consumers to continue coverage, Pennsylvanians will be forced to choose between coverage and basic necessities.” (PA Insurance Dept. press release 6/6/2025)