The exponential increase in the autism caseload in the California Developmental Services system, which is limited to cases of autism with substantial developmental disability.
Read moreUniting for Change: New Jersey NCSA Chapter's Inaugural Mixer
On Thursday, September 12, 2024, the New Jersey chapter of the National Council for Severe Autism (NCSA) held its inaugural in-person mixer. The event was marked by a palpable sense of energy and excitement. Parents of individuals with profound autism from across New Jersey gathered alongside experts in the field to unite with the goal of advancing policy in critical areas and effecting actionable change.
Read moreEffecting Meaningful Change with Grassroots Advocacy
What’s a grassroots network anyway? How can it help me? These are valid questions. Let’s talk about it.
Read moreParents of Adults with Severe Autism Express Concerns Over Tennessee’s “Jillian’s Law”
Jail is not the place for someone with developmental disabilities, not anywhere, and certainly not in Tennessee. While most the news coverage on Jillian’s law is referencing the challenges in staffing and facility availability, none are discussing the problem of those individuals who are refused care by hospitals even when beds and staffing are available.
Read moreNational Council on Severe Autism Announces Appointment of Its First Executive Director
In this new role, Kancir aims to foster authentic recognition of the disparities faced by the severe autism community and partner with other groups to break access barriers, fill service gaps, and enhance the overall quality of life for individuals with severe autism and related disorders.
Read moreNCSA Submits Public Comment to IACC on Family Caregiving
NCSA recommends the IACC authorize a report on autism caregiver burden across the lifespan, including specific analysis for the profound autism population. Concerns should include caregiver physical health, mental health, financial stability, educational and vocational opportunities, food and housing security, and overall quality of life. The report should include a strategic plan outlining specific solutions to secure the well-being of autism family caregivers.
Read moreNCSA Goes to Chicago — Pushing for Better Access to Medical and Dental Care for I/DD
NCSA joined IDD healthcare leaders in Chicago last week to challenge the status quo of antiquated, siloed health systems – calling for a reimagining of specialized integrated multidisciplinary healthcare. NCSA Policy Director Jackie Kancir attended the One Voice Conference hosted by the American Academy of Developmental Medicine & Dentistry (AADMD).
Read moreUCSF and UCTV Platform Autism Pseudo-science
As part of UCSF’s 2024 Developmental Disabilities Conference, Vikram Jaswal, Professor of Psychology at the University of Virginia, promotes facilitated communication.
Read moreAutism Cares Act Amended in House Energy and Commerce Committee
“including care necessary for physical safety.”
Amendment to H.R. 7213
National Council on Severe Autism Commends Progress on the Autism CARES Act
Washington, D.C. – The House Energy and Commerce Committee amended the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act (H.R. 7213) with expanded recognition of individuals with profound autism. This step continues the progress started in the House Subcommittee on Health last month, which added: “reflects the entire population of individuals with autism spectrum disorder, including the full range of cognitive, communicative, behavioral, and adaptive functioning, as well as co-occurring conditions and needs for support and services.” The latest amendment adds “including care necessary for physical safety.”
National Council on Severe Autism (NCSA) extends our sincere gratitude to Chairwoman Cathy McMorris Rogers (R-WA), Ranking Member Frank Pallone (D-NJ), and original bill sponsor Congressman Chris Smith (R-NJ) for their attention to our recommendations aimed to end discrimination of the profound autism community. We also thank all committee and subcommittee members who met with advocates of the NCSA National Grassroots Network, Autism Science Foundation, and Profound Autism Alliance to hear the lived experiences and unmet needs of families impacted by profound autism.
Since the last reauthorization in 2019, new data and scientific discoveries have altered the landscape for the autism community, and legislation regarding autism must reflect current realities. The CDC estimates 27% of individuals with autism spectrum disorder meet criteria for profound autism – non-verbal, minimally verbal, having an intelligence quotient below 50 – significantly increasing the service complexity and costs for care. A substantial subset of this community experiences harmful behavior symptoms such as self-injury, aggression, elopement, and PICA. The amended language recognizes the need for the National Institutes of Health (NIH) to direct research and activities with intentional inclusion of the profound autism community.
We look forward to continuing collaborative efforts with our colleagues and members of Congress to improve the quality of life and health outcomes for the individuals and families impacted by profound cognitive and communicative impairments and co-occurring conditions requiring very substantial supports and services. Together, we can end discrimination of profound autism.
A Major Victory for Disability Housing — and Choice — in Tennessee
People with I/DD will have more choices coming, in spite of the heavy campaigning of ad hominem attacks and fear-mongering false equivalencies in the name of disability “justice.”
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