Policy agenda

Five reforms we will keep bringing to Congress and the states.

This agenda is a working document. It is written for legislators, staff, and constituents who want specifics rather than slogans.

Research

1. Make federal autism research answerable to outcomes

Reauthorize Autism CARES with statutory reporting: what was funded, for whom, and what changed in health, communication, safety, or independence. Require the research portfolio to include biology and co-occurring conditions (epilepsy, GI disease, sleep, immune and metabolic issues), environmental epidemiology with rigorous methods, and services research for people with high support needs—not a genetics-only or services-only portfolio.

Governance

2. Rebuild public coordination so it can be audited

The Interagency Autism Coordinating Committee should publish usable metrics, hold accessible meetings, and include parents and caregivers of people with profound autism alongside autistic self-advocates and scientists. Strategic plans should be short enough to implement and specific enough to score.

Medicaid

3. Treat waiver waitlists as a national failure

Support federal incentives and oversight that shrink home- and community-based services waitlists, stabilize the direct-support professional workforce, and expand options for people who need 24-hour support. Community inclusion and intensive care are not opposites; policy should fund both.

Education

4. Enforce IDEA for students who are hardest to serve

Special-education rights exist on paper for students with intensive behavioral and communication needs. Implementation does not. We support full funding pressure, limits on unlawful seclusion and restraint, and capacity for specialized instruction when inclusion without support is abandonment.

Adulthood

5. End the cliff after 21

Guardianship alternatives, supported decision-making where appropriate, housing, day programs, employment with real wages, and medical transition from pediatrics are still patchwork. Federal policy should treat autistic adulthood as a design problem, not a private family emergency.

Public health

Surveillance that families can trust

CDC autism monitoring should remain independent, transparent, and timely. Families deserve prevalence data that distinguishes support-need levels and tracks co-occurring conditions, so appropriations debates are not fought with slogans.

APRC evaluates bills by whether they move these five points. We will support, amend, or oppose legislation on that basis, including Autism CARES reauthorizations and related appropriations.

Carry this agenda to your members of Congress