If you’re raising a medically complex child, you already know how vital Medicaid and Medicaid waiver programs are. Recent proposals to cut over $900 billion in Medicaid funding, like those in the 'One Big Beautiful Bill', pose real risks. This isn’t politics. This is about survival.

Key Facts

• Medicaid isn’t just for low-income adults. Over 40% of children with complex medical needs rely on it, regardless of income.

• Most private insurance plans do NOT cover home nursing, durable medical equipment, or long-term in-home support.

• Cuts would reduce federal funding, placing strain on state budgets and waiver programs (like CLASS, MDCP, and HCBS). Waiver programs can differ by state.

What’s At Risk?

• Waiver program waitlists could grow (many already wait 10+ years).

• Eligibility could narrow, leaving children without essential therapies, nursing, or medical equipment.

• Parents could be forced to quit jobs or go bankrupt covering costs that used to be covered.

How You Can Prepare

1. Know your child’s waiver and how they qualify.

2. Save all documentation proving medical need.

3. Speak up.Contact your representatives and share your story.

4. Follow organizations that fight for us:

   • Center on Budget and Policy Priorities (CBPP): https://www.cbpp.org/

   • National Health Law Program (NHeLP): https://healthlaw.org/

   • HCBS Advocacy Coalition: https://hcbsadvocacy.org/

You shouldn’t have to fight for your child’s care. But right now, families like ours need to stay informed and ready. The more we understand the system, the better we can protect our kids.