Why Advocacy Matters

Individuals with profound autism are among the most underserved in the disability community. Despite requiring the highest levels of care, they receive disproportionately less funding and attention than other populations on the autism spectrum.

Roman Shield fights to change that—through education, coalition building, legislative engagement, and direct family advocacy.

Legal Invisibility

Many systems fail to distinguish between autism and profound autism. The result: families in crisis receive services designed for individuals with far less intensive needs. Roman Shield advocates for policy that recognizes this distinction.

Our Goal

By 2035, we aim for 50+ Roman Shield–inspired pooled trusts operating nationwide, with profound autism recognized as a distinct funding category at the federal and state level.

Policy Focus Areas

Our advocacy efforts target systemic barriers that leave families without adequate support.

Distinct Category Recognition

Advocating for profound autism to be recognized as a distinct category with appropriate funding levels, service models, and policy attention at both state and federal levels.

Equitable Funding

Profound autism has historically been underfunded relative to need. We work to ensure funding distribution reflects the actual cost and intensity of care required.

Legislative Reform

Engaging with legislators and policymakers through testimony, coalition letters, and direct meetings to reform policies that impact our beneficiaries and their families.

Family-Level Advocacy

IEP and special education advocacy, benefits navigation, legal referrals, and direct support helping individual families secure the services they need.

How We Advocate

Coalition Building

  • Join state and national autism coalitions
  • Partner with disability rights organizations
  • Build alliances with healthcare providers
  • Coordinate with other special needs trusts

Legislative Engagement

  • Meet with legislators and policymakers
  • Provide testimony on relevant legislation
  • Document case law and policy impacts
  • Track and respond to regulatory changes

Community Education

  • Community awareness campaigns
  • Parent training and education programs
  • Professional development for caregivers
  • Public speaking and media engagement

Individual Family Support

  • IEP meeting representation and advocacy
  • Benefits application and appeals assistance
  • Legal referrals for guardianship and rights
  • Care plan development and coordination

Join the Movement

Every voice matters. Whether you’re a family member, professional, or concerned citizen, your advocacy makes a difference for individuals with profound autism.

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