What to Do If Your Medicaid Coverage Is at Risk

A Guide for Families Navigating the “One Big Beautiful Bill Act” Fallout

A Sudden Shift, A Heavy Impact

Before she even opened the envelope, she knew.
Her son’s lifeline—gone.

“I opened the mail and just froze. It said my son’s Medicaid was terminated.”

With the passage of the GOP’s One Big Beautiful Bill Act (OBBBA), federal funding for Medicaid and CHIP will be reduced by approximately $1 trillion over the next decade—impacting millions, including seniors, people with disabilities, and rural families. These cuts are already triggering eligibility restrictions, hospital closures, and service reductions.

🧠 Why Medicaid and CHIP Matter to Families Like Ours

If you’re raising a child with a serious medical condition like a congenital heart defect (CHD), Medicaid may be the only way your family can afford the care your child needs. Even with private insurance, Medicaid often covers life-saving hospital stays, surgeries, medical equipment, in-home nursing, and therapies.

  • Covers complex, high-cost care that private plans often limit or deny

  • Helps pay for medications, supplies, and nursing support

  • Prevents medical bankruptcy by covering deductibles and out-of-pocket costs

  • Sustains pediatric specialists and rural health providers

CHIP ( Children’s Health Insurance Program) is a companion program for children in working- and middle-class families whose incomes are too high for Medicaid but too low for full insurance coverage. It uses many of the same systems and appeal structures and is equally impacted by OBBBA’s cuts.

📊 Medicaid at a Glance

KEY FACTS ABOUT OBBBA IMPACT

  • $1.02 trillion in Medicaid/CHIP cuts over 10 years

  • Over 10 million people projected to lose coverage

  • 2.6 million adults with disabilities at risk

  • 300+ rural hospitals in danger of closure

  • 27 people per state covered under new HCBS funding — down from thousands

  • Cuts to Medicare will affect immigrants and low-income seniors

  • Medicaid cuts disproportionately impact Black, Latino, and Indigenous communities

📍 What Medicaid Is Called in Your State

Medicaid operates under different names depending on where you live. Knowing your state’s program name will help when searching online, calling hotlines, or filing appeals.

  • New York: MMC / Medicaid Managed Care

  • Florida: Florida KidCare

  • New Jersey: NJ FamilyCare

  • California: Medi-Cal

  • Texas: STAR / STAR Kids / STAR+PLUS

  • Massachusetts: MassHealth

  • Oregon: Oregon Health Plan (OHP)

  • Alabama: ALL Kids (CHIP) / Medicaid

🔗Find your state’s Medicaid contact:
https://www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip

📬 Step 1: Check Your Mail and Medicaid Portal Now

Log in to your Medicaid or CHIP health portal

  • Open all letters, even ones that look like junk mail

  • Update your address and contact info to avoid missed notices

  • Look for vague language—many cancellation letters give little warning

📉 Step 2: If You Get a Denial or Termination Notice

🛑 Act fast

  • Determine if it’s a full cancellation or request for documents

  • Check the deadline to appeal—some are as short as 10 calendar days

  • Call your state Medicaid helpline immediately:

“I received a Medicaid termination notice. I believe this is an error. I need steps to appeal and to confirm if benefits continue during the appeal.”

  • File your appeal and request that benefits continue during the appeal process

  • Ask about expedited hearings if urgent medical care is at stake

  • Keep records of all calls, documents, and names of representatives

🔗How to appeal a Medicaid or CHIP decision:
https://www.healthcare.gov/appeal-insurance-company-decision

🔗 CMCS bulletin on fair hearings and appeals (Dec 2024 PDF): https://www.medicaid.gov/federal-policy-guidance/downloads/cib-12202024.pdf

📞 Find your state’s Medicaid or CHIP ombudsman: https://www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip

❤️‍🩹 Step 3: Protect Your Child’s Medical Care

If your child has a medical condition, disability, or complex care needs:

  • Tell your care team (pediatrician, cardiologist, therapists)

  • Ask your cardiologist if they can expedite time-sensitive cardiac tests or follow-ups

  • Request documentation to support your appeal

  • Don’t skip appointments. Ask hospital financial counselors about care continuation

  • Refill prescriptions — request a 90-day supply if possible

  • Use telehealth when available to avoid delays

  • Confirm that immunization and developmental therapy records are up to date

  • Keep therapy and early intervention services on schedule

🧩 Step 4: Temporary Solutions During a Coverage Gap

  • Emergency Medicaid: Ask hospitals about temporary emergency coverage

  • Marketplace Insurance: Loss of Medicaid qualifies for Special Enrollment
    https://www.healthcare.gov

  • Hospital Financial Aid: Many offer charity care or sliding-scale billing

  • Community Health Clinics: Federally funded centers offer discounted care

  • Legal Aid Clinics: Find local Medicaid-specific legal help
    https://www.lawhelp.org

📋 Step 5: Reclaim Control Amid Crisis

Write down everything—calls, letters, deadlines

  • Submit appeals promptly—you can add missing documents later

  • Don’t do it alone—ask for help from hospital social workers, advocacy orgs, or legal clinics

  • Call script example:

“My child has a congenital heart defect. Medicaid was just terminated. I need help appealing the decision and ensuring continued care.”

  • Caregiver Self-Care:

    • Take 10 minutes to walk, breathe, or talk to someone

    • Join a parent-led group like Mended Little Hearts

    • Journal or vent—your feelings are valid

✊ You Are Not Powerless

Even in a moment of chaos and injustice, your voice matters.
You are not alone. You are doing everything you can—for the child you love.

“They’re not just cutting a budget line. They’re cutting a lifeline.”

Share this guide. Connect with others. And raise your voice.
📢 Email your state representative and demand Medicaid protections for medically fragile children.

📌 Additional Resources