NCSA Letter to ACL: Inclusion Must Mean Everyone — Autism Priorities for the Administration on Community Living (2025)
Policy Brief / Letter | 2025
To: Administration on Community Living (ACL)
Re: Inclusion Must Mean Everyone — Autism-Focused Priorities for the Administration on Community Living
PO Box 26853
San Jose, CA 95159-6853
Phone: (408) 690-6094
Email: info@ncsautism.org www.NCSAutism.org PO Box 26853 San Jose, CA 95159-6853 Phone: (408) 690-6094 Email: info@ncsautism.org
Inclusion Must Mean Everyone
Autism-Focused Priorities for the Administration on Community Living Who We Represent The National Council on Severe Autism (NCSA) advocates for individuals with profound autism,
intellectual disability, and complex medical/behavioral needs — those requiring 24/7, lifelong support. This group represents over 40% of the autism population, yet is consistently overlooked in federal policy.
The Problem: Exclusion in the Name of Inclusion
Federal programs under the Developmental Disabilities Act (DD Act) elevate independence,
productivity, inclusion, and integration as their guiding principles. For those who will never achieve independence or traditional productivity, these criteria create a systematic exclusion from resources, advocacy, and protection. Example: A young woman in Kentucky with profound IDD and 117 unexplained injuries was denied Protection & Advocacy representation because she could not self-direct.
Core Principles for Real Inclusion
Safety & Protection First – No one should be denied safeguards from abuse and neglect because they cannot self-advocate. Dignity & Wellbeing – Quality of life should be measured in health, stability, and human connection, not only in jobs or independence. Family Partnership – Families providing lifelong supervision are essential partners, not barriers,
to person-centered planning. Lifelong Support – Systems must be designed for those whose disabilities require intensive,
lifelong care. Access Without Barriers – Policymaking, training, and councils must accommodate caregivers (e.g., remote participation) to ensure proportional representation.
Policy Brief – Kramer Davis Health
www.NCSAutism.org
Page | 2 Our Requests to ACL • Reframe DD Act Values to ensure “inclusion” covers those with the most severe disabilities. • Guarantee proportional representation of individuals with severe autism/ID in all ACL programs, advisory boards, and funding. • Hold P&A and DD Act programs accountable for serving individuals unable to self- advocate. • Expand crisis supports for families who cannot staff waiver services despite highest- need status. • Invest in the full continuum of options — from competitive employment to residential/day programs for those needing 24/7 care. Conclusion “Inclusion” that leaves the most disabled behind is not inclusion. ACL has the opportunity — and the responsibility — to lead a national course correction. Safety, dignity, and survival must come first.
Respectfully,
Jill Escher, Board President
Jackie Kancir, Executive Director
National Council on Severe Autism (NCSA)
PO Box 26853, San Jose, CA 95159-6853 Phone: (408) 690-6094 Email: info@ncsautism.org Website: www.ncsautism.org
