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 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 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 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 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 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 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.
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.