“Many insurance plans do not cover evaluations. We are talking a cost of $700 to $2,000, just for the initial evaluation,” said Silvia Hierro, who has a son on the autism spectrum and is the founder of SOAK, a Florida nonprofit that focuses on raising awareness about autism and providing informational resources for families.
The fight for funding assistance continues from there, Hierro says, and the fact that each autistic child has custom needs for treatment makes it even harder. She says she’s found that self-funded insurance policies usually exclude everything related to autism treatment, thus starting a back-and-forth between families and insurers that can last the whole of childhood and into adulthood.
“The best example is a child who was born with a hearing problem, but later diagnosed with autism. The hearing problem has nothing to do with the autism but the insurance company will not approve speech therapy,” Hierro said.
For low-income families, Medicaid can cover the majority of costs, but Hierro says members of her group bemoan the lack of providers who accept Medicaid patients because the payout is so low. The wait list to obtain a Florida Medicaid Waiver is over a decade long, Hierro said. Families also have access to some services through the public school system for diagnosis and some therapies there.
Susan Belcher is the founder of Spring Forward for Autism, a Brevard County based organization that recently started awarding grants of up to $2,000 for therapies or equipment to families of children with ASD. In the first half of 2018, the organization approved grant applications of more than $30,000.
“We know that something as basic as an analysis for diagnosis is a cost too large for many families, and that keeps kids from receiving the treatments and therapies they really need,” Belcher said. “We don’t think that should happen to families, or kids with ASD.”