Hill Meeting Briefing

2026 Authentic Awareness Autism Assembly · Capitol Hill · July 15, 2026

1. A federal study of family caregiving for severe autism

The 2024 Autism CARES Act already authorized funding for autism research and programs. Today, no federal data source measures the families who provide daily care for individuals with severe autism. Our constituents support directing a small portion of those approved funds toward a study of these caregivers: their numbers, their health, and the value of the care they provide. A reliable count would help target existing resources more effectively. The approach mirrors the federal study of military caregivers that informed the 2024 Elizabeth Dole Act.

Context: in a 2025 NCSA survey, 79 percent of profound autism families were told a loved one was “too severe” to qualify for community-based services, and 88 percent had no plan for when they can no longer provide care.

2. Strengthening Medicaid Home and Community-Based Services

Medicaid Home and Community-Based Services (HCBS) is the primary funding stream for long-term supports. For individuals with severe autism, profound intellectual disability, and complex medical needs, current waiver structures can fall short. NCSA supports community integration as the default and recommends practical improvements so the system also serves the most severely affected. From our recent letter to CMS Administrator Oz:

• Stronger oversight, with abuse and neglect protections
• Workforce capacity, so authorized waivers are filled
• State reporting of waiver use by acuity level
• Acuity-based reimbursement that reflects intensity of need
• Targeted, clinically justified flexibility in the HCBS Settings Rule