Why does your zip code determine whether your child with disabilities gets help — or is left waiting for years?

In this episode, we break down the hidden structure of the Intellectual and Developmental Disabilities (IDD) support system and why access to Medicaid Home and Community-Based Services (HCBS) often feels like a lottery no family should have to enter.

We explore the reality behind long waiver waitlists, the difference between entitlement programs like TEFRA/Katie Beckett and capped HCBS waivers, and why more than 550,000 individuals with IDD are currently stuck waiting nationwide. For many families, that wait stretches beyond three years, and in some states, children miss critical early-intervention windows entirely.

You’ll also learn why families are forced into a painful contradiction — having to prove their child is “sick enough” for institutional care just to receive support at home — and how income rules, IQ thresholds, and state-by-state policy differences create deep and lasting inequities.

We take a close look at state funding disparities, where some states invest heavily in disability services while others spend pennies, leaving families behind. And even when a waiver is finally approved, many parents face another obstacle: provider shortages, service caps, and approved care that never actually shows up.

This episode uses a simple but powerful analogy — a concert ticket lottery — to explain why families can “win” a waiver and still walk away without real support.

If you are:

• A parent or caregiver of a child or adult with IDD

• An advocate, educator, or policymaker

• Someone trying to understand Medicaid waivers, HCBS, or disability services by state

…this conversation will give you clarity, language, and insight to better navigate — and challenge — a broken system.

🎧 Listen in to understand why where you live matters more than your child’s needs, and what families need to know to advocate more effectively.