The Honorable Tom Cole
Chairman, Committee on Appropriations
U.S. House of Representatives
The Honorable Rosa L. DeLauro
Ranking Member, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies
Committee on Appropriations
U.S. House of Representatives
The Honorable Susan Collins
Chair, Committee on Appropriations
United States Senate
The Honorable Shelley Moore Capito
Chair, Subcommittee on Labor, Health and Human Services,
Education, and Related Agencies
Committee on Appropriations
United States Senate
CC: The Honorable Robert Aderholt, Chair, House LHHS Appropriations Subcommittee; The Honorable Tammy Baldwin, Ranking Member, Senate LHHS Appropriations Subcommittee; The Honorable Patty Murray, Vice Chair, Senate Committee on Appropriations
Re: Funding to implement the 2026–2028 IACC Strategic Plan—research, translational science, and communications—in the Fiscal Year 2027 Continuing Resolution
Dear Chairman Cole, Ranking Member DeLauro, Chair Collins, and Chair Capito:
On behalf of the Autism Policy Reform Coalition and the families, clinicians, and advocates whose interests we represent, we write to urge the Appropriations Committees to use the forthcoming Fiscal Year 2027 Continuing Resolution to protect current federal autism investments and to provide targeted start-up funding and directive language so that the newly adopted Interagency Autism Coordinating Committee (IACC) Strategic Plan for 2026–2028 can begin to move from paper into practice.
On August 27, 2026, the IACC voted to adopt A New Federal Framework for Autism, the first comprehensive Strategic Plan since 2023 and the first plan prepared under the strengthened authorities of the Autism Collaboration, Accountability, Research, Education, and Services Act of 2024 (Autism CARES Act of 2024; Pub. L. No. 118-180). That statute reauthorized the IACC through September 30, 2029, directed the Committee to produce a Strategic Plan with proposed budgetary requirements, and required the NIH Director, for fiscal years 2026 through 2029, to prepare an annual autism budget estimate pursuant to the Plan and transmit it to the President for review and submission to Congress.
The Plan is advisory, but it is not optional as a planning document. Congress created the IACC, charged it with this work, and tied NIH’s annual autism budget estimate to the Plan. A Continuing Resolution that merely freezes last year’s rate of operations without recognizing the new Plan will leave agencies unable to stand up the research, translational, and public-communications architecture the Committee has now recommended. Families cannot wait another full appropriations cycle for that work to begin.
The community interest we represent is aligned with the Plan’s two overarching priorities: urgently improving medical care and research for autistic people, including those with profound autism and the highest support needs; and supporting autistic people across the lifespan, with particular attention to co-occurring medical conditions that drive suffering, crisis, and cost—gastrointestinal disease, sleep disruption, seizures, speech and motor impairment, and mental health conditions. CDC surveillance now estimates autism in approximately 1 in 31 eight-year-old children. Prevalence of that magnitude, combined with a large and growing adult population, makes delay in translation and public navigation indefensible.
The Plan is also explicit about scale. The Autism CARES Act of 2024 authorizes $390.444 million annually for specified federal autism activities through fiscal year 2029. The adopted Plan recommends raising total annual federal autism investment to $747.444 million, including $633 million at NIH (inclusive of the IACC), $48.1 million at CDC, and $66.344 million at HRSA. We recognize that a Continuing Resolution is not the vehicle for the full recommended increase. It is the vehicle that will determine whether implementation starts on October 1 or stalls until a full-year Labor-HHS bill is enacted.
We therefore respectfully request that the Committees include the following in the FY 2027 Continuing Resolution and accompanying statement of managers or joint explanatory statement:
- Protect the enacted FY 2026 Autism CARES floor. Provide that activities authorized by the Autism CARES Act of 2024 and funded in FY 2026 at NIH (including IACC operations), CDC (including the Autism and Developmental Disabilities Monitoring Network and related surveillance), and HRSA (including LEND and related autism training and resource programs) continue at not less than the FY 2026 enacted rate for operations, with no rescission, transfer, or administrative pause that would interrupt awards, surveillance sites, training programs, or Committee operations.
- Include an anomaly for research start-up under the new Strategic Plan. Provide not less than $75 million in additional FY 2027 authority, available through September 30, 2027, for NIH to begin the research agenda set out in the Plan, including the National Neurodevelopmental Regression Initiative (recommended at $57 million in the Plan’s FY 2028 architecture) and related work on co-occurring medical conditions, biomarkers, and precision subgroups. This anomaly should be treated as a first installment toward—not a substitute for—the Plan’s full recommended research envelope.
- Fund the translational engine: the National Autism Precision Therapeutics Initiative (NAPTI). The Plan correctly treats translation as infrastructure, not as an afterthought. NAPTI is designed as a distributed effort built on existing NIH networks, Autism Centers of Excellence, federal data assets, and FDA regulatory-science capacity—not as a new institute. The Plan’s planning range is approximately $10–20 million for design and initial coordination and $75–125 million annually at launch. We request an anomaly of not less than $20 million in FY 2027 to stand up NAPTI governance, a coordinating center, common data elements, assay and reference-methods work, and the first evidence-gated biomarker and trial-readiness portfolio. Without this seed, discovery will continue to stall short of clinical products families can use.
- Fund the communications and accountability platform: Autism.gov and IACC public reporting. The Plan calls for Autism.gov as a trusted federal front door—modeled on cancer.gov and alzheimers.gov—organized around life-stage navigation (screening, diagnosis, early intervention, school-age services, transition, adult health and employment, aging), a benefits and eligibility router, state-by-state service visibility, and an IACC Implementation Dashboard with quarterly milestones and annual agency attestations. The Plan also prioritizes communication access for nonspeaking and minimally speaking autistic people. We request not less than $8 million in FY 2027, available to the HHS Office of the Secretary in coordination with GSA/USAGov, NIH, CDC, HRSA, CMS, and the IACC, to complete governance and content inventory, launch a public beta of Autism.gov, stand up the Implementation Dashboard, and support IACC communications, working-group operations, and accessible public materials. Families should not have to assemble federal help from a dozen disconnected websites.
- Direct implementation in report language. Instruct the Secretary of Health and Human Services and the NIH Director to (a) treat the adopted 2026–2028 IACC Strategic Plan as the operative planning document for FY 2027 autism activities; (b) submit the statutory NIH autism budget estimate pursuant to the Plan no later than 90 days after enactment of the CR or the full-year Act, whichever occurs first; (c) designate or confirm a National Autism Coordinator with authority to convene NAPTI participating agencies; (d) report to the Committees, within 120 days, a 12-month implementation schedule for NAPTI start-up, the regression initiative, Autism.gov, and communication-access work; and (e) ensure that research and translation include individuals with profound autism and complex support needs, who have been underrepresented in prior federal portfolios.
These requests are modest relative to the Plan’s recommended annual total and modest relative to federal investment in other high-prevalence, high-burden conditions. They are, however, the difference between a Strategic Plan that sits on a website and a Strategic Plan that produces biomarkers, trial-ready protocols, clinician guidance, and a public navigation system families can actually use.
We further urge the Committees, as they complete the full-year FY 2027 Labor-HHS bill, to treat the CR anomalies as a bridge to the Plan’s recommended agency levels and to the NIH Director’s forthcoming budget estimate. The Coalition will support a full-year settlement that funds research, translation, and communications together—because discovery without translation, and translation without a public communications system, will not change outcomes.
The autism community has spent two decades asking federal agencies to act with urgency, measure results, and include people with the highest support needs. The IACC has now put those demands into a single federal framework. We ask the Appropriations Committees to give that framework the first dollars and the first instructions it needs in the Continuing Resolution.
We stand ready to provide technical assistance on anomaly language, report-language drafts, and a one-page implementation timeline for Committee staff. Thank you for your longstanding bipartisan stewardship of the Autism CARES programs and for your consideration of this request.
Respectfully submitted,
The Steering Committee
Autism Policy Reform Coalition
Enclosure (attached): One-page summary of requested CR anomalies and report-language points
Contact: appropriations@autismpolicyreform.org · Washington, D.C.
Organizational co-signers appear on the public list below as they authorize APRC to add their names.
Enclosure
Purpose. This enclosure summarizes, for Committee staff, the five requests in the accompanying letter. A Continuing Resolution is not the vehicle for the IACC Plan’s full recommended annual level of $747.444 million. It is the vehicle that can protect the enacted floor and seed research, translation, and communications so implementation does not wait for a full-year Labor-HHS bill.
Requested anomalies (above the FY 2026 rate for operations)
| Item | FY 2027 | Use of funds |
|---|---|---|
| 1. Autism CARES floor (NIH/IACC, CDC/ADDM, HRSA/LEND) | Hold harmless | Continue FY 2026 enacted activities with no rescission, transfer, or administrative pause. |
| 2. Research start-up (NIH) | $75 million | Begin the Plan’s research agenda, including the National Neurodevelopmental Regression Initiative ($57 million in the Plan’s FY 2028 architecture) and co-occurring medical conditions, biomarkers, and precision subgroups. Available through Sept. 30, 2027. First installment, not a substitute for the full research envelope. |
| 3. NAPTI translational start-up (NIH, with FDA/CDC/AHRQ/HRSA/CMS) | $20 million | Design and initial coordination of the National Autism Precision Therapeutics Initiative: governance, coordinating center, common data elements, assay/reference methods, first evidence-gated biomarker and trial-readiness portfolio. Plan range: $10–20 million to design; $75–125 million at launch. |
| 4. Communications: Autism.gov and IACC public reporting (HHS OS, with GSA/USAGov) | $8 million | Governance and content inventory; public beta of Autism.gov (life-stage navigation, benefits router, state service map); IACC Implementation Dashboard; accessible materials; communication access for nonspeaking and minimally speaking people. |
| Total new CR authority requested | $103 million | Plus hold-harmless for the existing $390.444 million CARES authorization / FY 2026 enacted autism activities. |
Suggested report language / joint explanatory statement
Autism CARES implementation.— The Committees direct the Secretary of Health and Human Services and the Director of NIH to treat the IACC Strategic Plan for 2026–2028, adopted August 27, 2026, as the operative planning document for fiscal year 2027 federal autism activities. Not later than 90 days after enactment, the NIH Director shall submit the annual autism budget estimate required by the Autism CARES Act of 2024 (Pub. L. 118-180) pursuant to that Plan. The Secretary shall designate or confirm a National Autism Coordinator with authority to convene agencies participating in the National Autism Precision Therapeutics Initiative. Not later than 120 days after enactment, HHS shall report to the Committees a 12-month schedule for NAPTI start-up, the National Neurodevelopmental Regression Initiative, Autism.gov, and communication-access work. Research and translation shall include individuals with profound autism and complex support needs.
Bridge to the full-year bill. These anomalies are a start-up bridge, not the Plan’s recommended agency levels ($633 million NIH including IACC; $48.1 million CDC; $66.344 million HRSA). The Coalition asks that the full-year FY 2027 Labor-HHS bill treat this CR package as the floor for negotiation around the NIH Director’s forthcoming estimate.