[Date]
The Honorable Mehmet C. Oz, MD, MBA
Administrator, Centers for Medicare & Medicaid Services (CMS)
U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244
Dear Dr. Oz:
Thank you for your efforts to eliminate Medicaid fraud and ensure that dollars are directed toward Americans in need of care. In the spirit of properly directing resources, and in light of the recent Department of Justice (DOJ) slip opinion interpreting federal integration protections, we write to urge CMS to preserve a full continuum of care for individuals with severe autism. Specifically, we ask that CMS 1) direct funds toward meaningful services, 2) reform the Settings Rule and enforce safety oversight, and 3) collect data on unmet need.
[CG1] [CG2] Put bluntly, individuals with severe autism are currently caught between two failing ends of the continuum of care: Home and Community-Based Services (HCBS) that frequently cannot accommodate their needs, and a diminishing supply of specialized institutional care options, namely Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). The DOJ opinion has heightened uncertainty throughout this entire continuum by leaving questions regarding circumstances for institutional care and the scope of federal protections for HCBS unresolved. Centers for Disease Control data estimates that approximately 26.7 percent of autistic children meet criteria for profound autism, a diagnosis characterized by severe intellectual disability, absent or minimal functional language, and a need for intensive supports, staffing, and 24/7 supervision. As aging family caregivers become incapacitated, it is crucial that this gap be filled now, before it leads to a future healthcare crisis.
Decades of deinstitutionalization, motivated by principles of community inclusion, independence, and person-centered planning, have reduced ICF/IID capacity and expanded reliance on HCBS. While we fully support these driving values, HCBS have frequently failed to engender appropriate services for individuals with the most intensive needs. HCBS waivers are structured, under the Settings Rule, to provide fragmented, unbundled services such as periodic supports and limited in-home care. These services may cater appropriately to lower acuity needs, but are insufficient to address the needs of people with severe autism. The bureaucratic constraints posed by the Settings Rule have resulted in insufficient service capacity and authorized but unfilled “empty” waivers. Many severely autistic individuals remain without care, with a 2025 survey from the National Council on Severe Autism finding that 79% of profound autism families had been told their loved one is “too severe” for community services.
Under narrower interpretations of integration enforcement authority and uncertain criteria for institutional care, individuals with severe autism now risk being left without care completely, falling into a gap where neither HCBS nor ICF/IID is available. Families excluded from HCBS who are unable to access appropriate institutional alternatives fear their loved ones being placed in custodial or other non-therapeutic institutional settings that are ill-equipped to meet complex medical, behavioral, and communication needs.
At this time, CMS has an opportunity to ensure that limited resources are actually reaching the most vulnerable beneficiaries. By guiding states to use funds to meet assessed needs, removing barriers to HCBS, and promoting transparent data reporting, CMS will ensure that people with severe autism receive services that are therapeutically sufficient to meet their assessed needs. Currently, a system that forces severe autism families to choose between inadequate community-based services and the absence of appropriate alternatives is actively undermining the Medicaid program. In light of these concerns, we request that the CMS issue guidance on the following in accordance with the Administrative Procedure Act:
1. Use Federal Funds as Intended: Meeting Assessed Need for High-Acuity Individuals
We ask CMS to issue sub-regulatory guidance promoting fiscal integrity, reiterating that the intended purpose of federal Medicaid funds is delivering care that corresponds to a beneficiary’s assessed level of need. CMS should address “empty waivers,” where individuals are determined to require an ICF/IID level of care, but the services needed to meet that determination are unavailable, insufficient, or not actually delivered. When a state determines that a beneficiary requires an ICF/IID level of care, it must meet its Medicaid obligations to that individual by using federal Medicaid dollars to make accessible the therapeutic and habilitative services capable of addressing the intensive behavioral, medical, and developmental needs reflected in that determination. Such services must be reasonably aligned in intensity and purpose with the standards reflected in 42 C.F.R. § 483.440(a)(1), whether delivered in the home, through HCBS, in an ICF/IID, or in another therapeutic Medicaid-funded setting. Federal Medicaid funds should not support paper compliance while care for intensive needs is diverted to emergency rooms, shelters, or other custodial/non-therapeutic settings.
2. Targeted Reform of the Settings Rule & Strengthening of Safety Oversight
We ask CMS to remove the access barriers the Settings Rule imposes on individuals with severe autism by delineating a clinical-needs-based exception to criteria defining HCBS, when such criteria are clinically inappropriate given an individual’s assessed needs. Currently, regulations inadvertently bar access to HCBS for the highest-acuity individuals, as they define HCBS only as those services that provide paid employment opportunities, prohibit proximity to inpatient treatment, and exhibit other conventional characteristics of independence. While the current heightened scrutiny process provides a limited mechanism for exceptions to the Settings Rule, its application has failed to provide a standardized, reliable pathway for serving the highest-need individuals. We therefore request that a targeted, clinical-needs-based exception be added to the HCBS Settings Rule regulations (namely 42 C.F.R. § 441.301, § 441.530, and § 441.710) creating a federal standard for HCBS funding availability, not subject to state discretion or existing on a case-by-case basis, for circumstances in which compliance with specific Settings Rule requirements is inconsistent with an individual's assessed clinical need, and when such exceptions are voluntary.
In the spirit of promoting flexible, appropriate, and individualized care for individuals with severe autism, CMS should strengthen abuse and neglect protections in HCBS quality assurance frameworks, including those in 42 C.F.R. § 441.302, through enhanced incident reporting requirements and independent investigation mechanisms.
3. Promote Accountability: Disaggregated Data Reporting
To ensure that limited Medicaid resources are proportionally directed to individuals requiring the highest acuity care, and to achieve an accurate understanding of the true cost of care, CMS should require states to publicly report, by acuity level, HCBS and residential service utilization, provider capacity, unfilled waiver slots, and outcomes, regardless of waiver authority or service delivery model. With this data, CMS should adjust reimbursement rates according to the acuity level of care required, and identify whether high-acuity individuals are receiving equitable access to services or whether artificial cost savings are being achieved through underservice.
Thank you for your consideration and for your continued commitment to serving America's most vulnerable. We believe these reforms will improve access to appropriate services for individuals with severe autism, ensure responsible stewardship of public funds, and affirm that Medicaid continues to serve intended beneficiaries.
Sincerely,
[Member Signature]
[Member Name]
[Title]
[CG1]work in cdc statistics
[CG2]capture spirit of the moment