Medicaid & Waiver Navigation Guide

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Start With Diagnosis

Has your child received a formal diagnosis?

Yes Not yet — ask about referral to genetics or developmental evaluation

Reminder: A rare diagnosis alone does not automatically qualify a child for Medicaid or waiver programs.

Document Functional Needs

Many programs require documentation of functional impact — not just diagnosis. Check what you have or plan to request:

Developmental evaluation Neuropsychological evaluation Adaptive functioning assessment School IEP / 504 evaluation Physician certification of medical complexity

Ask your provider:

What documentation may be required for Medicaid or waiver eligibility?

Notes

Identify Your State's Programs

Search these terms online (replace with your state):

"[Your State] Medicaid disability eligibility"

"[Your State] Medicaid waiver for children"

"[Your State] HCBS waiver children"

Your State

Contact (check when done):

State Medicaid Office Department of Human Services Developmental Disabilities Division Hospital social worker or case manager

Understand Possible Pathways

You may encounter these types of programs. Check any that apply in your state:

Standard Medicaid — Income-based eligibility Disability-Based Medicaid — Income rules vary by state HCBS / Katie Beckett / TEFRA Waivers — Home and Community-Based Services, may waive income limits Developmental Disability Waivers — Focused on DD-specific services Medical Fragility Waivers — For children with complex medical needs

Eligibility criteria vary by state. This is not a complete list.

Ask specifically:

Does my state offer disability-based Medicaid or Home and Community-Based Services waivers for children?

Contact name / date / notes

Programs identified for your state

Ask About Waitlists

Is there a waitlist? How long is it? Should we apply now even if we're unsure about eligibility?

Applying early may matter. You don't need certainty to start the process.

Waitlist details / dates

If Approved

Medicaid may cover or provide:

Therapies (OT, PT, speech, ABA, etc.)
Durable medical equipment
Respite or in-home supports
Act as secondary insurance

Note: Some out-of-state specialty hospitals may not accept your state's Medicaid.

Ask specifically:

Does this coverage extend to our current specialists?

Coverage Notes

If Not Approved

Next steps if denied:

Reapply later with updated documentation Provide additional functional impact evidence Appeal the decision Explore nonprofit or grant resources

Eligibility can change as needs evolve. A 'no' today is not a 'no' forever.

Next steps if denied