A reconstituted federal committee voted through a 336-page plan, a new NIH research designation, and dozens of agency objections in a single day.
Key Takeaways
- The vote and the number: The Interagency Autism Coordinating Committee adopted its 2026-2028 Strategic Plan on August 27, recommending $357 million in new annual spending for fiscal year 2028 on top of the $390.444 million the Autism CARES Act of 2024 already authorizes, for a total of $747.444 million. The plan is a recommendation to the Secretary of Health and Human Services, not an appropriation.
- NIH named profound autism a highlighted funding topic: The National Autism Coordinator opened the meeting by designating profound autism a highlighted topic for investigator-initiated funding, with Common Data Elements under consideration and a portfolio analysis underway. None of the plan’s four new funding lines goes to the subgroup, which the document mentions 45 times.
- Named agencies did not all agree: A packet circulated before the vote records 41 agreed HRSA corrections, one SSA clarification, and 15 conforming revisions pending HRSA confirmation, most turning on HRSA’s position that it lacks the expertise or resources for assigned clinical-guidance roles. DoD and SSA separately requested removal from specific assignments.
- What it means for ABA providers: The plan never uses the phrase applied behavior analysis, but it names Medicaid 101 times and EPSDT 25 times and assigns CMS work on coverage alignment and medical necessity criteria. A proposed revision would ask CMS to encourage states to review prior-authorization rules, denial patterns, and payment rates that make covered services practically unavailable.
Two moments bracketed the day. At 9:15 on the morning of August 27, in a first-floor conference room at the National Institutes of Health Neuroscience Center in Rockville, a slide went up with an orange header and three bullets. It read: “NIH | Profound Autism.” Profound autism designated as a highlighted topic for investigator-initiated funding opportunities. Common Data Elements under consideration to support standardized data collection. NIH portfolio analysis underway to better understand and communicate research related to the profound autism subgroup.
Seven hours later, at the end of an agenda that ran through six parts of a 336-page document, the Interagency Autism Coordinating Committee voted to adopt its 2026-2028 Strategic Plan, along with a recommendation that the federal government spend $747.444 million a year on autism by fiscal year 2028.
Between them sat a full day of member presentations, oral public comment, and deliberation over proposed revisions. It was only the second public meeting since Secretary of Health and Human Services Robert F. Kennedy Jr. reconstituted the committee in January, replacing every public member.
What the IACC Strategic Plan Recommends and What It Funds
The figures in the adopted document are more specific than the round numbers that have circulated. The Autism CARES Act of 2024 authorizes $390.444 million in annual federal autism funding for each of fiscal years 2025 through 2029: $306 million for NIH and the IACC, $28.1 million for CDC, and $56.344 million for HRSA. That authorization is the baseline, and the plan is explicit that every figure it offers is an addition to it rather than a substitute.
The recommended addition for fiscal year 2028 totals $357 million: $270 million for the NAPTI translational portfolio at NIH, $57 million for a National Neurodevelopmental Regression Initiative at NIH, $20 million for autism surveillance and public health monitoring at CDC, and $10 million for diagnostics workforce training at HRSA. That brings NIH to $633 million, CDC to $48.1 million, and HRSA to $66.344 million, for a total recommended level of $747.444 million. The plan describes these as recommended levels rather than directed appropriations.
The distinction between an authorization and an appropriation matters here, because the two are easily conflated. The $390.444 million baseline is what Congress has authorized, not necessarily what has been spent. The plan attaches its own caveats as well: a note added to the budget table states that the HRSA diagnostics workforce line is a recommended additional-appropriation planning target, not a present agency commitment, and remains subject to statutory authority, program requirements, agency discretion, and enacted appropriations.
The document’s most consequential change may be architectural. Since 2009, every IACC Strategic Plan has been organized around seven questions, a framework that let anyone track funding and progress across editions. This plan discards it. Advocates have noted that the restructuring will make trend comparison difficult, and several said a plain-language version should have been made available. On substance, the plan reduces the emphasis on genetic research and adds the regression initiative, the surveillance and diagnostics workforce money, a National Autism Precision Therapeutics Initiative described as a mechanism for carrying science into practice, and a proposed public portal at autism.gov modeled on cancer.gov and alzheimers.gov.
NIH Names Profound Autism a Highlighted Funding Topic
The morning announcement came from Diana Diaz-Harrison, the HHS National Autism Coordinator, who also serves as Principal Deputy Commissioner of the Administration on Disabilities within the Administration for Community Living and was appointed to the Coordinator role in February. The Profound Autism Alliance, which had representatives at the meeting, posted a photograph of the slide within hours and described it as evidence that its advocacy had had an impact. It is the first time NIH has placed the term in a funding context.
The mechanics are worth stating precisely. An investigator-initiated funding opportunity is one where the researcher proposes the study; NIH signals topical interest and reviews what comes in. Designating profound autism a highlighted topic tells applicants that proposals in this area will find a receptive audience. It does not reserve a dollar figure, and it does not obligate an Institute to fund anything in particular.
The term is younger than most of the debate around it. It entered the literature in December 2021, when the Lancet Commission on the Future of Care and Clinical Research in Autism argued that grouping autistic people with around-the-clock support needs together with those who are verbally and intellectually able had made research and service planning incoherent. CDC researchers narrowed the estimate in April 2023, reporting that 26.7 percent of eight-year-olds with autism met the criteria, roughly one in four, and finding them more likely to have seizure disorders, self-injurious behaviors, and lower adaptive scores. The IACC voted in April to adopt the term as a standardized functional research and policy designation for individuals aged eight or older with minimal or no functional speech who require continuous or near-continuous supervision and substantial assistance with daily living.
Not everyone on the committee was comfortable with the boundary. Andrea Beckel-Mitchener of the National Institute of Mental Health, Deputy Director of the NIH BRAIN Initiative, warned in April that a narrow definition could exclude people from studies and, in her phrasing, “potentially backfire” on the research portfolios it was meant to improve, according to STAT.
The designation arrived without money attached. The Profound Autism Alliance, reviewing the draft with its advocacy network on August 5, counted 45 mentions of profound autism and no dedicated funding line; a word search of the August 17 draft returns exactly 45. Judith Ursitti, Cofounder and President of the organization, welcomed the plan’s attention to the population while saying she wished the committee had attached funding to it, and noted that the document’s research claims were difficult to verify for want of citations.
What the plan does give the subgroup is a place in its research architecture. Among the shared capabilities proposed for NAPTI, the multicenter trial network states that inclusion of profound autism, intellectual disability, minimal or no functional speech, regression, epilepsy, and medical complexity should be designed in unless scientifically or ethically unjustified. The surveillance section directs agencies to develop standardized definitions for regression, communication status, profound autism, co-occurring conditions, and adaptive functioning, and to expand those data elements across sites. That is the work the morning slide described as Common Data Elements under consideration, and it may be the announcement’s longest-reaching element. Standard cognitive and communication instruments were built for people who can complete them, and the outcomes that matter most to families, including aggression, self-injury, elopement, and pica, are recorded inconsistently or not at all. That gap is why the argument over how many hours of ABA are clinically appropriate keeps being settled by cost rather than evidence.
The Autism CARES Act Budget Mechanism Behind the Recommendation
The plan is advisory, but the statute gives it a channel most federal advisory documents do not have. Under the Autism CARES Act of 2024, for fiscal years 2026 through 2029 the NIH Director must prepare an annual budget estimate for NIH autism-related initiatives pursuant to the Strategic Plan. The Secretary and the Committee must be given a reasonable opportunity to comment on that estimate, but neither may change it, and the Director submits it directly to the President for review and transmittal to Congress.
The plan cites the Act’s legislative sponsor, Representative Chris Smith, describing this professional-judgment or “bypass” budget as a way of giving the autism community an account of priority research areas and the resources needed to improve quality of life. The Committee does not write the estimate or control its contents. What the sequence establishes is that the Strategic Plan comes first and the estimate follows from it.
Whether that produces money is a separate question, and the record is not encouraging. The 2016-2017 plan called for $685 million by 2020; combined federal and private funding reached $409.2 million that year. The 2021-2023 plan restated the $685 million target with a 2025 deadline. The current authorization stands at $390.444 million.
Federal Agencies Named in the Plan Filed Corrections
One document circulated before the meeting has drawn less attention than the budget table and may say more about how the plan would work in practice. A packet of federal member requests received on August 18 and 19, described as covering 41 agreed HRSA corrections, one SSA clarification, and 15 conforming revisions pending HRSA confirmation, records a federal agency repeatedly declining roles the plan had assigned it.
The pattern is consistent. Where the draft asked HRSA to develop clinical guidance, evaluate medication effectiveness, fund multicenter trials, or write care pathways, HRSA responded that it does not have the expertise or resources for that work and can instead disseminate findings through workforce training programs. On a proposed multicenter leucovorin trial, HRSA noted that its small extramural research program lacks the resources to fund a trial of that kind. On several data items, it noted simply that it does not collect patient-level data. DoD requested removal from a regression-related row, citing its research program’s current areas of interest and limited appropriations. SSA requested removal from two assignments. HUD asked for language acknowledging that portal development would depend on appropriations.
The plan addresses this structurally rather than by rewriting each assignment. Language on page 249 states that where a recommendation would require additional staffing, program capacity, or appropriations, naming an agency identifies a potential future role and does not represent a present commitment by that agency. A companion clarification adds that naming a lead or supporting agency reflects the Committee’s assessment of which agency is best positioned, and is not evidence that the agency has concurred, has been consulted, or has committed resources. That is a candid caveat, and it frames how the implementation tables should be read: a plan assigning twelve federal agencies to sequenced twelve-month, twenty-four-month, and five-year deliverables is describing an intended architecture, not commitments already obtained.
The Public Comment Timeline and the Vote
The process that produced the plan has drawn sustained attention. The IACC released the draft on a Monday in July and gave the public four days to respond. Ursitti observed at the time that caregivers of people with profound autism frequently cannot get a shower in four days. HHS rescheduled the meeting and reopened the comment window, pushing the vote from July 31 to August 27 and setting an August 20 deadline for written submissions.
More than 5,000 comments came in, by the count of Chair Sylvia Fogel, a Psychiatrist and Harvard Medical School Instructor who is also the parent of autistic children. Many were not posted to the IACC website until the day before the committee voted. That timing produced a joint statement from more than a dozen autism and disability organizations, among them the Autism Society of America, Autism Speaks, the Autism Science Foundation, and the Autistic Self Advocacy Network, saying they were deeply concerned that the committee was shutting the community out of decisions that guide hundreds of millions of dollars in research funding, and that all public comment deserves real consideration.
In an August 17 letter circulated with the updated draft, Fogel wrote that the revisions were limited and targeted: factual corrections, technical clarifications, more precise descriptions of agency roles, and editorial improvements that did not alter the plan’s overall framework, intent, or policy direction. Members of the public who had already commented on the July 17 version, she wrote, could be confident their feedback remained relevant. At the meeting, she defended the plan as a response to a decade of accumulated testimony, describing community members who are drowning, literally in the case of wandering and elopement and figuratively day to day, and saying of the record before the committee: “They have said so in this committee’s record for a decade.”
Lisa Ackerman, a public member who cofounded The Autism Community in Action and was appointed to the committee in January, offered a related reading in a post written the morning after. She wrote that every public comment had driven the committee forward, that the themes were clear, and that she suspected earlier public comment had not been considered, or more progress would have been made. She described the plan as passing with double the budget and an expansion into areas of great need, called the investment a strong one against an annual national cost of $450 billion, and credited Fogel’s leadership. She also wrote that press coverage had been poor and asked families to respond to articles they disagreed with.
The agenda structured the afternoon around three separate votes: one on the updated draft, one on substantive revisions, and one authorizing non-substantive editorial, formatting, citation, and conforming corrections. A separate packet of proposed revisions, including a redlined rewrite of the housing and supported living domain dated August 26, was before the committee for that second vote. Which of those proposals were adopted is not yet reflected in the publicly posted draft, and the final published plan will differ from the August 17 version in ways not yet documented.
What the IACC Strategic Plan Means for ABA and Medicaid Providers
Across 336 pages, the phrase “applied behavior analysis” does not appear once. Neither does any reference to Board Certified Behavior Analysts. “Medicaid” appears 101 times and “EPSDT” 25 times. The plan reaches directly into the authority that governs how ABA is paid for without naming the service, which is the most useful single fact an operator can take from it.
Several provisions bear on provider economics. A proposed revision submitted by a public member in response to public comment would recommend that CMS consider issuing a State Health Official letter on payment and coverage barriers, clarifying same-day preventive and problem-oriented services, reinforcing EPSDT follow-up, and encouraging states to review blanket edits, prior-authorization rules, denial patterns, and payment rates that make covered services practically unavailable. The planning target attached to it is $2 million in year one and $3 million in years two and three. It is a proposal rather than adopted text, and its status after the vote is not yet public.
The housing and supported living domain reaches further into payment policy. It would have CMS enable states to adopt acuity-based reimbursement reflecting the staffing intensity high-support individuals require, establish reserved-capacity or crisis set-asides so a residential slot becomes available when an aging caregiver can no longer provide care, and offer presumptive eligibility at the school-to-adult transition so supports do not lapse at age-out. That last item speaks directly to the services cliff autistic young people fall off when they age out of pediatric ABA. The same section documents annual direct support professional turnover of 40 to 50 percent in many settings, with 67 percent of autism-specific Medicaid waiver directors naming low salaries as the primary driver, and proposes measuring authorized, scheduled, delivered, and unfilled direct-support hours. That distinction between services authorized and services actually delivered is one few state systems currently make.
The near-term pressures are moving on a faster clock and in a different direction. CMS published its State Medicaid and CHIP Applied Behavior Analysis Toolkit on August 4, three weeks before the vote, reporting that Medicaid and CHIP spending on ABA climbed from roughly $1.94 billion in 2021 to $10.1 billion in 2025 while the number of children receiving services grew 67 percent. States are acting on that arithmetic. Florida’s ABA Task Force opened with a $6.57 billion spending figure and a statutory instruction to weigh month caps. Amerigroup is cutting Georgia Medicaid ABA rates with an October 1 objection deadline. Indiana paired a two-phase rate phasedown with a 4,000-hour lifetime cap. Nebraska held rates flat because no appropriation was made, and New York froze new provider enrollments for six months.
Delancy Allred, Public Policy Director at the Autism Society of America, called the plan ambitious and welcomed its recognition that autistic people’s needs run across the lifespan and beyond research alone, into healthcare, education, housing, employment, mental health, and family supports. Her concern was scope: the plan sets out a large number of priorities requiring significant federal funding, staffing, infrastructure, data systems, and cross-agency coordination, and in her assessment does not sufficiently prioritize what the government can realistically accomplish. The federal agencies that spent August filing corrections were making a version of the same point from inside.
For the largest ABA platforms and the private equity firms behind them, the plan is a directional signal about where federal research dollars may flow. For everyone else, the operative document this month is the CMS toolkit. The recommendation now sits with Secretary Kennedy, and after that with a Congress heading into November midterms on a short legislative calendar. Ackerman, writing the morning after, called the plan a starting point with much more work to be done.
