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 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 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 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 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: 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 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: 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.