Caregiver urges county audit of SELF Medicaid waiver access for families of children with autism

A Cuyahoga County resident told county council on July 8 that families of children with autism are not being adequately informed about Ohio's SELF waiver, a Medicaid option that can pay family members to provide care. Ebony Spano, a Highland Heights resident and caregiver to a 9-year-old autistic son, asked the council to order three actions: a public audit of SELF waiver access and support administrator (SSA) compliance; a racial- and ZIP-code breakdown of waiver recipients; and a written education plan for SSAs by the third quarter.

Spano described intensive caregiving needs for her son and said she had paused a master's degree program to provide daily care. "No one told me about the SELF waiver," she said, and said she learned about the program only through online searches. She told council that as of February 2025, 1,500 individuals in Ohio were on the SELF waiver while Cuyahoga County has roughly 2,400 children with autism-specific IEPs; she said the SELF waiver can provide up to $25,000 a year for medically necessary care.

Spano described families being steered toward lesser options and called the gap a policy failure. She asked council to investigate awareness and compliance and to publish demographic breakdowns of who receives SELF waiver funding.

Why it matters: Spano framed the issue as access to an existing Medicaid option that can directly affect whether family members can be compensated for full-time caregiving. She tied her request to requests for county accountability and data to ensure equitable access across communities.

At the July 8 meeting these were public comments; the transcript records no immediate committee referral or formal vote on the three requests.