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 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 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 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.