Government Affairs
NCSA's formal record of federal and state advocacy — Hill briefs, congressional letters, agency comments, legislative testimony, and issue one-pagers. Every document is free to read and share.
Federal Correspondence
NCSA Public Comment on the Draft IACC Strategic Plan 2026–2028
NCSA's comment on the draft plan: restore the intellectual disability pathway in the profound autism definition, restore public collaboration, disclose the plan's drafting record, hold all interventions to one evidence standard, and preserve the full range of vocational settings.
DOJ July 2026
NCSA's statement on DOJ's July 2026 notice clarifying that the 2011 Olmstead Guidance is non-binding, reaffirming support for a full continuum of residential settings chosen by individuals and their guardians.
DC26 Caregiver Research Brief
NCSA's legislative ask for a comprehensive, RAND-style federal study on family caregiving for severe autism, modeled on the Elizabeth Dole Foundation's military-caregiver research.
DC26 Letter to CMS
NCSA's letter urging CMS Administrator Dr. Oz to preserve a full continuum of care for individuals with severe autism amid Medicaid fraud-prevention efforts and DOJ integration-mandate developments.
DC26 CMS Leave-Behind
One-page leave-behind distributed to congressional offices during the July 2026 Authentic Awareness Autism Assembly, supporting NCSA's letter to CMS on preserving the full continuum of care.
DC26 Caregiver Leave-Behind
One-page leave-behind distributed to congressional offices during the July 2026 Authentic Awareness Autism Assembly, supporting the ask for a comprehensive federal study on caregiving for severe autism.
NCSA Public Comment on the 2028 HCBS Quality Measure Set (CMS-2453-NC)
NCSA's public comment on CMS's proposed HCBS Quality Measure Set, urging measures that reflect the needs of individuals with severe autism and intellectual disability.
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
NCSA Executive Director Jackie Kancir's Letter for the Record to the House Energy and Commerce Subcommittee on Health, responding to March 2026 testimony that compared HCBS and facility costs and outcomes without accounting for the needs of individuals with severe autism.
NCSA Hill Brief: Leveraging the Executive Order on Crime and Disorder to Advance Severe Autism Housing and Civil Commitment Reform — July 2025
NCSA's July 2025 Hill briefing outlines how the administration's Executive Order on crime and disorder opens policy channels in civil commitment, housing-first mandates, and HCBS Settings Rule reform for adults with severe autism.
NCSA Letter to CMS: Rescind the HCBS Settings Rule — March 2025
NCSA urges CMS Deputy Administrator Drew Snyder to rescind or amend the Obama-era HCBS Settings Rule, which has created crippling regulatory barriers preventing individuals with severe and profound autism from accessing appropriate residential services.
NCSA Hill Brief: Declaring Autism a Public Health Emergency — 2025
NCSA urges the HHS Secretary to declare autism a Public Health Emergency under Section 319 of the Public Health Service Act, citing the profound autism crisis affecting 26.7% of children with ASD.
NCSA Hill Brief: Requesting a GAO Investigation into Housing for Adults with Severe Autism — 2025
NCSA urges Congress to direct the Government Accountability Office to investigate housing options and regulatory barriers for adults with severe and profound autism, where HUD and CMS policies conflict in damaging ways.
NCSA Letter to ACL: Inclusion Must Mean Everyone — Autism Priorities for the Administration on Community Living (2025)
NCSA presents priorities for the Administration on Community Living, arguing that federal DD Act programs systematically exclude individuals with severe autism who cannot self-advocate — and calling for true inclusion that accounts for those with the highest support needs.
NCSA Letter to HHS, NIH, CDC: Withdraw 'Autism Acceptance Month' Designation — September 2024
NCSA wrote to the heads of HHS, NIH, NIMH, and CDC to challenge the unilateral designation of April as 'Autism Acceptance Month,' arguing the action was made without public input, trivialized the severe autism crisis, and systematically sidelined the grim realities of profound autism.
NCSA Oral Testimony to the IACC: Family Caregiving for Severe Autism — July 2024
NCSA Executive Director Jackie Kancir's July 2024 oral testimony to the IACC on family caregiving, delivered from the perspective of families living in constant crisis — and honoring NCSA co-founder Feda Almaliti, who died in a fire she could not escape because her son with severe autism could not be convinced to flee.
NCSA Public Comment to the IACC: Family Caregivers of Individuals with Severe Autism — June 2024
NCSA's June 2024 public comment to the IACC on family caregivers argues that the lifelong, 24/7 nature of extreme caregiving for individuals with profound autism is categorically different from typical caregiving — and demands targeted longitudinal research and equal IACC representation.
NCSA Statement: Commending Progress on the Autism CARES Act — June 2024
NCSA commended the House Energy and Commerce Committee for amending H.R. 7213 to include language recognizing individuals with profound autism across the full range of cognitive, communicative, behavioral, and adaptive functioning — and care necessary for physical safety.
NCSA One-Pager: The Autism CARES Act Needs an Overhaul Before Reauthorization — February 2024
NCSA's February 2024 one-pager opposing H.R. 7213 in its current form, calling for priority funding to identify autism's causes, recognition of profound autism in research, elimination of duplicative research, and replacement of the IACC with an NIH autism agency.
NCSA One-Pager: The Crisis of 'Empty Waivers' for the Profoundly Autistic — February 2024
NCSA's February 2024 one-pager documents the systemic failure of HCBS Medicaid waivers for individuals with severe autism — waivers that exist on paper but deliver no services because providers refuse to accept clients with complex behavioral needs.
NCSA One-Pager: Retaining 14(c) Non-Competitive Employment for Severely Cognitively Disabled Adults — February 2024
NCSA's February 2024 one-pager argues that the 14(c) sub-minimum wage certificate program under the Fair Labor Standards Act provides critical employment, community connection, and purpose for individuals with severe cognitive disabilities who cannot compete in the open labor market.
NCSA One-Pager: The Direct Care Workforce Crisis for Severe Autism — February 2024
NCSA's February 2024 one-pager makes the case that the direct support professional shortage is not an inconvenience but a crisis — one that forces families out of the workforce, fills emergency rooms, and leaves the most vulnerable adults with autism without the trained care they require.
NCSA Letter to Sen. Menendez and Rep. Smith: Autism CARES Act Reauthorization — Concerns and Request for Meeting (January 2024)
NCSA wrote to the lead sponsors of the Autism CARES Act reauthorization in January 2024, arguing that 18 years of CARES funding have failed to address the autism crisis and urging bold reinvention — including a new NIH Office of Autism Research to replace the captured IACC.
NCSA Public Comment to the IACC: Proportional Representation for Profound Autism — September 2023
NCSA's September 2023 public comment to the IACC argues that despite nearly 30% of autistic children having profound autism, the IACC devotes a disproportionate share of its time to higher-functioning individuals — and requests that 30% of each meeting be dedicated to profound autism and another 30% to intellectual disability.
NCSA Comment to ACL: Severe Autism Families Left Out of the National Strategy to Support Family Caregivers — November 2022
NCSA submitted detailed comments on ACL's 2022 National Strategy to Support Family Caregivers, identifying critical gaps including the invisibility of severe autism caregivers, the threat of competitive employment bias, and the near-total absence of guardianship protections.
NCSA Letter to the IACC: Against Sanitized, Neutral Language in the Autism Strategic Plan — October 2022
Signed by the full NCSA board, this October 2022 letter to IACC Chair Joshua Gordon protests the committee's move to cleanse the autism Strategic Plan of clinical language — arguing that sanitized, strengths-based language actively harms the severe autism community by denying the realities that justify federal research funding.
NCSA Public Comment to the IACC: Carve Out Specific Recommendations for Profound Autism — January 2022
NCSA's January 2022 public comment asks the IACC to explicitly carve out research recommendations for the profound autism population — a group exceeding one-third of all autism diagnoses that is systematically excluded from research yet requires the most intensive lifetime supports.
NCSA Public Comment to the IACC: Federal Autism Priorities for the Severe Autism Community — July 2021
NCSA's July 2021 public comment to the IACC outlines the community's highest federal priorities: honest clinical language, rejection of anti-parent prejudice, acknowledgment of exploding autism prevalence, maximizing the full continuum of residential and vocational options, and urgent research on therapeutics for dangerous behaviors.
NCSA Letter to Vice President Biden: Include Severe Autism in Your Disability Agenda — June 2020
NCSA wrote to the Biden campaign in June 2020 arguing that the campaign's disability policy platform as written excluded the urgent needs of individuals with severe forms of autism and intellectual disability — urging explicit inclusion on guardianship protections, residential options, and retention of the 14(c) employment program.
NCSA Letter Supporting the SSI Restoration Act (H.R. 4280) — September 2019
NCSA's September 2019 letter supporting H.R. 4280, the SSI Restoration Act, arguing that the outdated $2,000 asset limit traps adults with severe autism in poverty and penalizes families for providing basic financial support to their most vulnerable members.
NCSA Letter Opposing the Transformation to Competitive Employment Act and Raise the Wage Act — July 2019
NCSA's July 2019 letter opposing both the TCEA and the Raise the Wage Act, arguing that eliminating the 14(c) sub-minimum wage program would strip adults with profound cognitive disabilities of their jobs, their programs, their earned income, and their right to meaningful community engagement.
NCSA Letter Supporting Reauthorization of the Autism CARES Act — February 2019
NCSA's February 2019 letter supporting reauthorization of the Autism CARES Act, urging Congress to use the reauthorization as a foundation for the systemic reform needed to prepare the country for the surge of adults with severe autism who will require lifelong public services.
State Correspondence
NCSA Letter to the Kentucky General Assembly: Support SB 30 — Video Monitoring in Group Homes for People with Severe Disabilities (January 2025)
NCSA Executive Director Jackie Kancir's January 2025 letter to the Kentucky General Assembly urging support for SB 30, which would authorize guardian-approved video monitoring in group homes — documenting the legal, constitutional, and empirical case that cameras protect those who cannot protect themselves.
NCSA Support for Tennessee HB 2497 — Nonprofit Disability Housing Options (March 2024)
NCSA's March 2024 letter and testimony to the Tennessee House Committee on Health supporting HB 2497, arguing from years of national policy analysis that nonprofit residential communities for adults with disabilities increase community access and quality of life — and do not constitute segregation.
NCSA Opposition to Oregon HB 4088 — Criminalizing Disability Behaviors in Hospital Settings (February 2024)
NCSA Policy Director Jackie Kancir's February 2024 testimony opposing Oregon HB 4088, which would expose individuals with severe autism and IDD to felony assault charges for challenging behaviors during hospital care — arguing that criminalizing disability symptoms has no deterrent effect and that specialized units, not prosecution, are the answer.
NCSA Letter to Oregon: Urgent Need for 1135 Waiver to Pay Extreme Family Caregivers — May 2022
NCSA's May 2022 letter to Oregon state officials urging extension of the COVID-era 1135 waiver that allowed family members of children with severe disabilities to be paid as caregivers — documenting the extreme caregiving situations (diapering 200-pound adults, preventing rock ingestion, monitoring seizures) that go far beyond ordinary parenting.
NCSA Letter Supporting New Jersey's Billy Cray's Law — Electronic Monitoring in Group Homes (June 2020)
NCSA's June 2020 letter supporting New Jersey's Billy Cray's Law (A4013), which would authorize electronic monitoring devices in group homes for adults with developmental disabilities — arguing that for individuals who cannot communicate abuse, cameras are not surveillance but their only witness.
NCSA Letter Opposing Pennsylvania's Plan to Close State Developmental Centers — October 2019
NCSA's October 2019 letter to Governor Tom Wolf opposing the closure of Pennsylvania's Polk and White Haven Developmental Centers, arguing that closing residential facilities does not save money — it shifts costs onto aging parents, law enforcement, ERs, and nursing homes, and leaves the most behaviorally complex individuals with nowhere to go.
Attorneys, researchers, journalists, and legislative staff may request additional materials or arrange a briefing.
Contact: policy@ncsautism.org