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Understanding Medicaid Policy & Politics

Community webinar held on April 28, 2026.

Become a State Advocate

Sign up today if you are interested in becoming more involved in state advocacy.

Sign Up

Medicaid Resources

Reliable Resources

EveryLIfe Foundation for rare diseases (ELF)

EveryLIfe Foundation for rare diseases (ELF)

  •  Kaiser Family Foundation (KFF) 
  •  The Commonwealth Fund 
  •  Georgetown University Centers for Children and Families 

EveryLIfe Foundation for rare diseases (ELF)

EveryLIfe Foundation for rare diseases (ELF)

EveryLIfe Foundation for rare diseases (ELF)

  • Established Rare Disease Advisory Councils

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD)

  •  Rare Disease Advisory Councils 
  •  NORD State Report Card 

Disability groups

National Organization for Rare Disorders (NORD)

National Organization for Rare Disorders (NORD)

  •  The ARC 
  •  AARP 
  •  American Association of People with Disabilities (AAPD) 

Downloads

Download these resources to support your Medicaid education and awareness.

July 2025: Medicaid Matters: What's changing in Medicaid? (pdf)

Download

March 2026: Medicaid Home Care: Protect Vital Services (pdf)

Download

July 2025 Updates

On July 4, 2025, the One Big Beautiful Bill Act became law.

Major Medicaid changes start in 2027 and will vary by state.


What could change:

  • More frequent renewals/re-verification for some adults (those not qualifying due to disability).
  • Added paperwork and slower response times at Medicaid  offices.
  • A federal Medicaid spend reduction of ~$1T,  which may push states to tighten eligibility, lower provider payments,      or cut optional services like HCBS.

What remains:

  • People with disabilities are exempt from work  requirements.
  • Policies will roll out state-by-state—details will differ.

What to do now:

  1. Plug in with local stakeholders/state Medicaid to track your state’s plan.
  2. Share your story—especially if your family relies on HCBS—so policymakers see the real impact.

H.R.1 & What it Means for Rare Disease

An  Important RDLA Community Webinar recorded on July 10, 2025


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