On March 18, 2026, the House Subcommittee on Health held a hearing on “Lowering Health Care Costs for All Americans: An Examination of the U.S. Provider Landscape.” The House heard testimony that HCBS should be mandated (as is), with claims that HCBS costs approximately $70,000 per year per person compared to $395,000 per year per person for facilities. In response, NCSA’s executive director, Jackie Kancir, submitted the following Letter for the Record to the House Energy and Commerce Subcommittee on Health.
March 27, 2026
The Honorable Brett Guthrie
Chairman, Committee on Energy and Commerce
U.S. House of Representatives
Washington, D.C. 20515
The Honorable Frank Pallone
Ranking Member, Subcommittee on Health
U.S. House of Representatives
Washington, D.C. 20515
RE: Hearing on Lowering Health Care Costs for All Americans: An Examination of the U.S. Provider Landscape (March 18, 2026) — HCBS Costs and Outcomes for Individuals with Severe Autism
Dear Chairman Guthrie and Ranking Member Pallone:
The National Council on Severe Autism (NCSA) respectfully submits this letter for the hearing record following the Subcommittee’s March 18, 2026 hearing on the U.S. provider landscape. NCSA is a national nonprofit advocacy organization representing individuals with severe forms of autism and related neurodevelopmental disorders—those who are often nonverbal, often have co-occurring intellectual disability, and require intensive, lifelong support and supervision. We write to ensure the Subcommittee has a complete picture of Home and Community-Based Services (HCBS) costs and outcomes for this population, which we believe is essential to any informed discussion of Medicaid’s role in serving people with disabilities.
NCSA shares the concern expressed during the hearing about proposed Medicaid cuts. We are equally concerned, however, that Congress may not have a complete picture of what HCBS delivers—and fails to deliver—for the most severely affected individuals.
Understanding the Full Cost of Care
The Subcommittee heard testimony that HCBS serves individuals with intellectual and developmental disabilities (IDD) at an average cost of approximately $70,000 per year, compared with $395,000 annually for large state-run institutions. That $70,000 figure may be accurate as a national average if shaped by who the system actually serves. However, when individuals with the highest acuity needs are routinely denied services, discharged by providers, or approved for waivers that no agency will staff, they register in expenditure data as low-cost or zero-cost participants. The average drops not because care is affordable, but because the most expensive-to-serve individuals are not receiving care.
That average is driven overwhelmingly by low-acuity waivers serving individuals who need employment coaching, periodic check-ins, or help navigating community resources—services that closely replicate what the existing Vocational Rehabilitation (VR) program was designed to provide. Tennessee’s Employment and Community First (ECF) CHOICES waiver is one example: classified as HCBS, it functions largely as a workforce development program for individuals with the lowest support needs. Many waivers counted in the national average are similarly structured for populations whose needs bear little resemblance to those of individuals with severe forms of autism.
The individuals NCSA represents—those with severe and profound autism, significant intellectual disability, dangerous behaviors including aggression and self-injury, and the need for round-the-clock supervision—are not captured in that average. They are the population the system screens out. When states do serve individuals with the highest acuity needs through HCBS, the costs look nothing like $70,000. New Jersey is one of the only states where an independent oversight body has calculated actual per-resident costs in community settings. The State Ombudsman documented in a 2024 Annual Report that community-based provider agencies—not institutions, but HCBS group homes in residential neighborhoods—receive between $250,000 and $500,000 per year per resident. That comparable data does not exist from other states is not because other states are serving this population more cheaply. It is because the data infrastructure to track per-resident costs by acuity level does not exist in most states—a gap MACPAC identified in 2020 and one that remains unaddressed. The absence of data is itself evidence of the transparency failure this letter describes. These New Jersey figures are not evidence of waste. They reflect what adequate 24-hour supervision, behavioral crisis intervention, and specialized staffing actually cost for individuals whose needs the national average does not represent.
The broader fiscal picture underscores the point. New Jersey’s Community Care Program budget has tripled to approximately $3 billion while enrollment grew only 21%. The Subcommittee should understand that rising HCBS costs for this population are driven not by inefficiency but by the intensity of need—and that presenting a national average without disaggregating by acuity level gives Congress an incomplete basis for policy decisions.
The Population Missing from the National Average
Much of the national conversation about HCBS centers on individuals who, with adequate support, find employment, build skills, and live independently. That population exists and deserves robust services. But it is not the population falling through the floor of the American disability system.
NCSA’s 2025 Family Caregiver Survey of nearly 1,300 families of individuals with severe autism found that 79% have been told their loved one is “too severe” or “not a good fit” for available services. Fifty-four percent have been discharged from a provider because of behavioral challenges. Only 21% report reliable, consistent in-home staffing. Seventy-four percent of these individuals still live at home. 15.8% report caring at home only because no other placement or staffing exists. These families are not on a waiting list. They are past the waiting list. They hold an HCBS waiver—on paper—and receive nothing.
NCSA calls these “empty waivers.” The individual qualifies. The waiver is approved. And then no provider will take the case, because the behaviors are too dangerous, the staffing ratios too intensive, and the reimbursement rate too low. The system built a door and told these families they could not walk through it. No national data source currently tracks how many approved HCBS waivers go unfilled for this reason. That gap in the data is itself a policy failure.
Why Expansion Without Reform Falls Short
NCSA does not oppose HCBS funding. We urge the Subcommittee, however, to recognize that expanding HCBS in its current form does not constitute a sufficient response to the disability services crisis facing the most severely affected individuals in America.
The current system has closed most of the specialized residential facilities that once served individuals with the highest acuity needs—without building anything to replace them. States have shuttered ICFs/IID and state-operated developmental centers under deinstitutionalization mandates, and the HCBS Settings Rule has created regulatory hostility toward intentional communities and other specialized models that families of individuals with severe disabilities overwhelmingly prefer. A September 2025 study funded by the Colorado Developmental Disabilities Council found that 93% of stakeholders surveyed want intentional communities as a housing option (Neuro-Inclusive Housing Solutions, 2025). Yet these communities face extraordinary regulatory pushback under the CMS HCBS Settings Rule’s presumption that any setting where individuals with disabilities are clustered is inherently “institutional.”
Meanwhile, peer-reviewed research from Ghent University demonstrates that the defining characteristics of institutionalization—rigid hierarchy, loss of autonomy, depersonalized care—are features of organizational culture, not building type (Cautreels et al., 2025). Closing large facilities without transforming the culture of care simply relocates the institutional mindset into smaller settings. The problem was never the architecture. It was the stagnation. That has not changed under our current HCBS system, despite the shuttering of “facilities.”
The New Jersey Ombudsman’s 2024 Annual Report illustrates why expansion without accountability reform is insufficient. The report documented 185 deaths in state-licensed Division of Developmental Disabilities (DDD) community residences in a single year, 112 of them classified as “unexpected.” It found pervasive abuse and neglect in community-based settings. Direct Support Professionals (DSPs) in these homes earn $17 to $20 per hour against a living wage of $26.20, driving catastrophic turnover and chronic understaffing. Provider agencies are permitted to self-investigate abuse allegations involving their own staff. The Ombudsman described the result as a “Tale of Two Systems”: one for individuals whose needs the system finds convenient, and another for those it does not. More funding without stronger oversight, workforce investment, and accountability mechanisms will not change that dynamic.
What Congress Should Do
Before expanding HCBS, Congress must fix it. NCSA urges this Subcommittee to consider the following:
First, require states to report waiver utilization rates disaggregated by acuity level. Congress cannot evaluate HCBS cost-effectiveness if it does not know how many approved waivers go unfilled because no provider will serve the individual. A 2020 MACPAC-commissioned report by Health Management Associates found that gaps in state information technology infrastructure and data analysis capacities “limit data-driven program policies and decision-making,” that waiver expenditure data “do not provide the full picture needed to assess ID/DD services,” and that program siloes between state Medicaid and DD agencies prevent staff from sharing and analyzing data critical to policy decisions (Barth, Lewis, & Simmons, 2020). The Supports Intensity Scale (SIS) is a standardized assessment that can help delineate support levels. We urge the Subcommittee to commission a report that provides an accurate representation of the efficacy of current HCBS utilization for individuals with a SIS score of 5+.
Second, establish tiered reimbursement rates that reflect the true cost of serving individuals with high-acuity needs, including those requiring 1:1 or 2:1 staffing, behavioral crisis intervention, and 24-hour supervision.
Third, direct CMS to revise the HCBS Settings Rule to evaluate residential options based on outcomes, quality of life, and individual choice—not density or proximity to other disabled individuals. The current framework penalizes models that those affected by severe forms of autism and related disorders want and need, defying the cornerstone principle of HCBS, person-centered care.
Fourth, fund specialized workforce development for direct support professionals and clinicians serving individuals with IDD. The same MACPAC-commissioned report found that over 90% of psychiatrists reported they did not have the training or skills to work with people with intellectual disabilities, and that the scarcity of competent mental health providers drives people with IDD into emergency departments and inpatient admissions for crisis intervention (Barth, Lewis, & Simmons, 2020). The workforce gap extends to direct care: NCSA’s survey found that 69% of families need staff trained in non-verbal communication, 67% in daily living support, and 60% in managing severe aggression—yet 15% cannot find appropriately trained staff at all and only 21% have reliable in-home staffing of any kind.
Fifth, stop conflating HCBS expansion with adequate care. Half the families in our survey say their loved one’s current living arrangement is not sustainable long-term. Only 12% have a concrete plan for their child’s care when they can no longer provide it. Over 65% of respondents are between the ages of 45-64, themselves aging and approaching a time their bodies and minds can no longer serve as the full system of support for individuals requiring complex, intensive, 24/7 care. These are not families who need more of the same. They need something that does not yet exist in most states.
Conclusion
When Congress evaluates HCBS, it deserves a complete picture—not just the population the system serves adequately, but also the population it fails to reach. National cost averages that do not account for acuity level give policymakers an incomplete basis for decisions that will determine whether the most vulnerable Americans receive adequate care or continue to be defined out of the system designed to serve them.
We respectfully request that this letter be entered into the hearing record, and we welcome the opportunity to provide additional data, testimony, or briefing to the Subcommittee on the unmet needs of individuals with severe autism and their families.
Respectfully submitted,
Jackie Kancir
Executive Director
National Council on Severe Autism
Enclosure:
National Council on Severe Autism. (2025). 2025 family caregiver survey results.
References:
Cautreels, D., Remmery, M., Benoot, T., Roose, R., & Roets, G. (2025). Institutional pedagogy and the transformation of residential care for, and with, disabled citizens. Disability & Society, 40(8), 2204–2229. https://doi.org/10.1080/09687599.2024.2411544
Neuro-Inclusive Housing Solutions. (2025). Neuro-inclusive intentional communities in Colorado: Investigating demand & policy recommendations. Colorado Developmental Disabilities Council. https://www.neuroinclusivehousingsolutions.com
New Jersey Office of the Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families. (2024). 2024 annual report. State of New Jersey. https://www.nj.gov/treasury/njombudsman/
Barth, S., Lewis, S., & Simmons, T. (2020). Medicaid services for people with intellectual or developmental disabilities: Evolution of addressing service needs and preferences. Health Management Associates, report to the Medicaid and CHIP Payment and Access Commission. https://www.macpac.gov