Navigating Medicaid Cuts: How Parents Can Advocate for Their Child’s Disability Services in 2025

As a parent of a child with disabilities, you already know what it means to be a fierce advocate.

You’ve mastered medical terminology, navigated complex systems, and fought tirelessly for your child’s needs.

Now, there’s another challenge on the horizon.

Proposed Medicaid cuts in 2025 that could fundamentally alter the support your family depends on.

What’s Really at Stake?

The numbers are sobering. Proposed cuts could reduce Medicaid funding by up to $880 billion, affecting 79 million enrollees.

Including children and loved ones like yours who rely on these services daily.

For families in our community, this isn’t just about budget numbers.

It’s about the therapist who helped your child communicate for the first time, the wheelchair that provides independence, and the school aide who makes education accessible.

Consider what Medicaid actually provides:

• 77% of essential services for people with intellectual and developmental disabilities
• Critical early intervention programs that research shows can improve outcomes by 30% for children with autism
• Vital equipment, therapies, and in-home support that keep families together and thriving

When Systems Change, Families Feel It First

Behind every policy shift are real families facing real consequences.

Across the country, families have experienced the sudden loss of in-home nursing and support services they depended on for years.

In these cases, the daily care routines families had carefully established over years disappeared overnight.

Leaving them to piece together alternative solutions while their loved ones’ needs remained unchanged.

This isn’t happening in just isolated cases. In California alone, Medi-Cal supports $161 billion in services that families depend on.

When these services are cut, waiting lists grow longer, critical development windows close for children, and the burden falls heavily on parents who are already stretched thin.

Often forcing impossible choices between employment, other family obligations, and providing necessary care.

Your Advocacy Toolkit: Practical Steps Forward

Step 1: Map Your Current Benefits

Before you can protect something, you need to understand exactly what you have.

Think of this as creating a detailed map of your child’s support system:

• Check your Medicaid card and documentation
• Call your state Medicaid office for a complete benefits overview
• Review the Member Handbook with a highlighter, noting services your child uses

Step 2: Ensure Continuous Coverage

Even amid uncertainty, maintaining current coverage is critical:

• Use your state’s Medicaid portal or Medicaid.gov to verify status
• Set calendar reminders for renewal deadlines
• Keep documentation of all communications

Step 3: Amplify Your Voice Through Collective Action

There is profound power in parents speaking as one voice:

• Connect with organizations like Family Voices, The Arc, or DREDF
• Attend a virtual advocacy training session
• Join parent-led social media groups focused on disability rights

Step 4: Tell Your Story Effectively

Decision-makers need to understand what these cuts mean in human terms:

• Craft a one-page letter to your representatives with specific examples
• Practice a 2-minute version of your story for town halls or phone calls
• Include a clear photo of your child engaged in activities that Medicaid supports

Finding Support Beyond Medicaid

While fighting to protect Medicaid, also explore complementary supports:

• Regional Centers may offer additional services
• SSDI benefits could provide supplementary support
• Local disability organizations often have emergency assistance programs

You Are Not In This Alone

Thanks to Medicaid-funded supports, families across the country have watched their children discover passions and talents.

From nature photography to music to adaptive sports. Finding joy and purpose that enriches both their lives and communities.

This is what we’re all fighting for. Not just services, but the meaningful lives they make possible.