March 27, 2026
The Honorable Brett Guthrie
Chairman, Committee on Power and Commerce
U.S. Home of Representatives
Washington, D.C. 20515
The Honorable Frank Pallone
Rating Member, Subcommittee on Well being
U.S. Home of Representatives
Washington, D.C. 20515
RE: Listening to on Reducing Well being Care Prices for All Individuals: An Examination of the U.S. Supplier Panorama (March 18, 2026) — HCBS Prices and Outcomes for People with Extreme Autism
Pricey Chairman Guthrie and Rating Member Pallone:
The Nationwide Council on Extreme Autism (NCSA) respectfully submits this letter for the listening to file following the Subcommittee’s March 18, 2026 listening to on the U.S. supplier panorama. NCSA is a nationwide nonprofit advocacy group representing people with extreme types of autism and associated neurodevelopmental problems—those that are sometimes nonverbal, typically have co-occurring mental incapacity, and require intensive, lifelong help and supervision. We write to make sure the Subcommittee has an entire image of Dwelling and Neighborhood-Primarily based Providers (HCBS) prices and outcomes for this inhabitants, which we consider is crucial to any knowledgeable dialogue of Medicaid’s position in serving individuals with disabilities.
NCSA shares the priority expressed throughout the listening to about proposed Medicaid cuts. We’re equally involved, nevertheless, that Congress could not have an entire image of what HCBS delivers—and fails to ship—for essentially the most severely affected people.
The Subcommittee heard testimony that HCBS serves people with mental and developmental disabilities (IDD) at a median value of roughly $70,000 per 12 months, in contrast with $395,000 yearly for giant state-run establishments. That $70,000 determine could also be correct as a nationwide common if formed by who the system truly serves. Nonetheless, when people with the very best acuity wants are routinely denied providers, discharged by suppliers, or authorized for waivers that no company will workers, they register in expenditure knowledge as low-cost or zero-cost individuals. The typical drops not as a result of care is reasonably priced, however as a result of essentially the most expensive-to-serve people should not receiving care.
That common is pushed overwhelmingly by low-acuity waivers serving people who want employment teaching, periodic check-ins, or assist navigating neighborhood assets—providers that carefully replicate what the present Vocational Rehabilitation (VR) program was designed to supply. Tennessee’s Employment and Neighborhood First (ECF) CHOICES waiver is one instance: categorised as HCBS, it capabilities largely as a workforce growth program for people with the bottom help wants. Many waivers counted within the nationwide common are equally structured for populations whose wants bear little resemblance to these of people with extreme types of autism.
The people NCSA represents—these with extreme and profound autism, important mental incapacity, harmful behaviors together with aggression and self-injury, and the necessity for round the clock supervision—should not captured in that common. They’re the inhabitants the system screens out. When states do serve people with the very best acuity wants by way of HCBS, the prices look nothing like $70,000. New Jersey is without doubt one of the solely states the place an impartial oversight physique has calculated precise per-resident prices in neighborhood settings. The State Ombudsman documented in a 2024 Annual Report that community-based supplier businesses—not establishments, however HCBS group properties in residential neighborhoods—obtain between $250,000 and $500,000 per 12 months per resident. That comparable knowledge doesn’t exist from different states shouldn’t be as a result of different states are serving this inhabitants extra cheaply. It’s as a result of the info infrastructure to trace per-resident prices by acuity stage doesn’t exist in most states—a spot MACPAC recognized in 2020 and one that is still unaddressed. The absence of knowledge is itself proof of the transparency failure this letter describes. These New Jersey figures should not proof of waste. They replicate what enough 24-hour supervision, behavioral disaster intervention, and specialised staffing truly value for people whose wants the nationwide common doesn’t symbolize.
The broader fiscal image underscores the purpose. New Jersey’s Neighborhood Care Program finances has tripled to roughly $3 billion whereas enrollment grew solely 21%. The Subcommittee ought to perceive that rising HCBS prices for this inhabitants are pushed not by inefficiency however by the depth of want—and that presenting a nationwide common with out disaggregating by acuity stage offers Congress an incomplete foundation for coverage selections.
A lot of the nationwide dialog about HCBS facilities on people who, with enough help, discover employment, construct expertise, and reside independently. That inhabitants exists and deserves sturdy providers. However it’s not the inhabitants falling by way of the ground of the American incapacity system.
NCSA’s 2025 Household Caregiver Survey of practically 1,300 households of people with extreme autism discovered that 79% have been instructed their liked one is “too extreme” or “not a great match” for obtainable providers. Fifty-four % have been discharged from a supplier due to behavioral challenges. Solely 21% report dependable, constant in-home staffing. Seventy-four % of those people nonetheless reside at dwelling. 15.8% report caring at dwelling solely as a result of no different placement or staffing exists. These households should not on a ready checklist. They’re previous the ready checklist. They maintain an HCBS waiver—on paper—and obtain nothing.
NCSA calls these “empty waivers.” The person qualifies. The waiver is authorized. After which no supplier will take the case, as a result of the behaviors are too harmful, the staffing ratios too intensive, and the reimbursement fee too low. The system constructed a door and instructed these households they might not stroll by way of it. No nationwide knowledge supply presently tracks what number of authorized HCBS waivers go unfilled for that reason. That hole within the knowledge is itself a coverage failure.
NCSA doesn’t oppose HCBS funding. We urge the Subcommittee, nevertheless, to acknowledge that increasing HCBS in its present type doesn’t represent a adequate response to the incapacity providers disaster going through essentially the most severely affected people in America.
The present system has closed a lot of the specialised residential services that after served people with the very best acuity wants—with out constructing something to switch them. States have shuttered ICFs/IID and state-operated developmental facilities below deinstitutionalization mandates, and the HCBS Settings Rule has created regulatory hostility towards intentional communities and different specialised fashions that households of people with extreme disabilities overwhelmingly desire. A September 2025 research funded by the Colorado Developmental Disabilities Council discovered that 93% of stakeholders surveyed need intentional communities as a housing possibility (Neuro-Inclusive Housing Options, 2025). But these communities face extraordinary regulatory pushback below the CMS HCBS Settings Rule’s presumption that any setting the place people with disabilities are clustered is inherently “institutional.”
In the meantime, peer-reviewed analysis from Ghent College demonstrates that the defining traits of institutionalization—inflexible hierarchy, lack of autonomy, depersonalized care—are options of organizational tradition, not constructing kind (Cautreels et al., 2025). Closing giant services with out remodeling the tradition of care merely relocates the institutional mindset into smaller settings. The issue was by no means the structure. It was the stagnation. That has not modified below our present HCBS system, regardless of the shuttering of “services.”
The New Jersey Ombudsman’s 2024 Annual Report illustrates why growth with out accountability reform is inadequate. The report documented 185 deaths in state-licensed Division of Developmental Disabilities (DDD) neighborhood residences in a single 12 months, 112 of them categorised as “sudden.” It discovered pervasive abuse and neglect in community-based settings. Direct Help Professionals (DSPs) in these properties earn $17 to $20 per hour in opposition to a residing wage of $26.20, driving catastrophic turnover and power understaffing. Supplier businesses are permitted to self-investigate abuse allegations involving their very own workers. The Ombudsman described the outcome as a “Story of Two Programs”: one for people whose wants the system finds handy, and one other for these it doesn’t. Extra funding with out stronger oversight, workforce funding, and accountability mechanisms won’t change that dynamic.
Earlier than increasing HCBS, Congress should repair it. NCSA urges this Subcommittee to think about the next:
First, require states to report waiver utilization charges disaggregated by acuity stage. Congress can’t consider HCBS cost-effectiveness if it doesn’t know what number of authorized waivers go unfilled as a result of no supplier will serve the person. A 2020 MACPAC-commissioned report by Well being Administration Associates discovered that gaps in state info know-how infrastructure and knowledge evaluation capacities “restrict data-driven program insurance policies and decision-making,” that waiver expenditure knowledge “don’t present the complete image wanted to evaluate ID/DD providers,” and that program siloes between state Medicaid and DD businesses stop workers from sharing and analyzing knowledge vital to coverage selections (Barth, Lewis, & Simmons, 2020). The Helps Depth Scale (SIS) is a standardized evaluation that may assist delineate help ranges. We urge the Subcommittee to fee a report that gives an correct illustration of the efficacy of present HCBS utilization for people with a SIS rating of 5+.
Second, set up tiered reimbursement charges that replicate the true value of serving people with high-acuity wants, together with these requiring 1:1 or 2:1 staffing, behavioral disaster intervention, and 24-hour supervision.
Third, direct CMS to revise the HCBS Settings Rule to guage residential choices primarily based on outcomes, high quality of life, and particular person alternative—not density or proximity to different disabled people. The present framework penalizes fashions that these affected by extreme types of autism and associated problems need and wish, defying the cornerstone precept of HCBS, person-centered care.
Fourth, fund specialised workforce growth for direct help professionals and clinicians serving people with IDD. The identical MACPAC-commissioned report discovered that over 90% of psychiatrists reported they didn’t have the coaching or expertise to work with individuals with mental disabilities, and that the shortage of competent psychological well being suppliers drives individuals with IDD into emergency departments and inpatient admissions for disaster intervention (Barth, Lewis, & Simmons, 2020). The workforce hole extends to direct care: NCSA’s survey discovered that 69% of households want workers educated in non-verbal communication, 67% in day by day residing help, and 60% in managing extreme aggression—but 15% can’t discover appropriately educated workers in any respect and solely 21% have dependable in-home staffing of any form.
Fifth, cease conflating HCBS growth with enough care. Half the households in our survey say their liked one’s present residing association shouldn’t be sustainable long-term. Solely 12% have a concrete plan for his or her little one’s care once they can not present it. Over 65% of respondents are between the ages of 45-64, themselves ageing and approaching a time their our bodies and minds can not function the complete system of help for people requiring advanced, intensive, 24/7 care. These should not households who want extra of the identical. They want one thing that doesn’t but exist in most states.
When Congress evaluates HCBS, it deserves an entire image—not simply the inhabitants the system serves adequately, but additionally the inhabitants it fails to succeed in. Nationwide value averages that don’t account for acuity stage give policymakers an incomplete foundation for selections that can decide whether or not essentially the most weak Individuals obtain enough care or proceed to be outlined out of the system designed to serve them.
We respectfully request that this letter be entered into the listening to file, and we welcome the chance to supply extra knowledge, testimony, or briefing to the Subcommittee on the unmet wants of people with extreme autism and their households.
Respectfully submitted,
Jackie Kancir
Govt Director
Nationwide Council on Extreme Autism
Enclosure:
Nationwide Council on Extreme Autism. (2025). 2025 household caregiver survey outcomes.
