Our Asks: NCSA Authentic Awareness Autism Assembly:

Washington, DC- April 2-3

#1
Declare Autism a Public Health Emergency:

A public health emergency (PHE) is a designation given to specific areas of our nation’s healthcare that many would consider an epidemic or worth prioritizing to improve our research, data, medical approaches (ex. medicine, therapy, support services, etc.).   PHEonepager.docx

The President has a sense of urgency about autism, so we want to pressure the administration to declare autism a public health emergency. Opportunity for members of congress to get a win and change lives!  (Chris Smith)

#2
Evaluate housing options for adults with severe/profound autism

GAO Report: National Council on Severe Autism (NCSA) urges Congress to initiate a Government Accountability Office (GAO) investigation to evaluate housing options for adults with severe/profound autism, identify regulatory barriers, and propose actionable solutions. This investigation will optimize existing resources, improve outcomes, and ensure fiscal responsibility. Addressing the Critical Housing Needs of Adults with Severe/Profound Autism

Adults with severe/profound autism require specialized housing and support that existing models fail to provide. Despite physically relocating into the community, many people with intellectual and developmental disabilities (IDD) fail to be meaningfully included in the community. (Joe Synder-CMS-changes to current settings rule)

#3
Autism Cares Act

Passed with overwhelming bipartisan majorities, The Autism Collaboration, Accountability, Research, Education and Support (CARES) Act of 2024 was signed into law on December 23, 2024. The Autism CARES Act reauthorizes and expands the provisions of previous iterations of this legislation, providing authority for research, services, prevalence tracking and other activities through September 2029. ASF_25_CARES_Act_Summary_031825.pdf 

Focus on Causality-Prevention-Treatment research specifically on profound autism.  New language- Requires inclusivity in medical research on autism, including profound autism, requiring research that reflects the entire population of individuals with autism spectrum disorder, including those individuals with co-occurring conditions, and the full range of needs for supports and services, including such supports and services to ensure the safety, and promote the well-being, of such individuals. Time was taken to revise it please ensure changes take effect so the profound/severe receive priority.  Congress has direct oversight on this law. Please remind the Executive Branch that this is the intent and focus of new language in this law and please help ensure it will be carried out. ASF_25_ProfoundAutism_StrategicPlan_031825.pdf

#4
NCSA Position Statement: Medicaid Policy & Healthcare Access

NCSA supports comprehensive Medicaid reform that addresses the service gaps, barriers to care, and other impediments to access that limit essential support services for individuals with severe autism and their family caregivers.  NCSA opposes Medicaid block grants, and advocates for the direct care workforce to be preserved, enhanced, and strengthened to achieve substantial cost savings while improving care quality. A stable, well-trained direct care workforce is a fiscally responsible approach that serves multiple vulnerable populations while delivering measurable economic benefits.  NCSA advocates for sustainable and meaningful Medicaid reimbursement rates to ensure access to qualified providers serving individuals with severe autism. NCSA opposes any reductions to essential services, medical equipment, or caregiver support programs. These services are fundamental to maintaining health and safety standards for individuals requiring comprehensive, lifetime support. NCSA Medicaid position.docx