CHARLESTON — Advocates of children with autism hope a July 13 summit at Stonewall Jackson Resort will help West Virginians make the most of the state’s new law requiring some insurance coverage for their treatment.
The Lewis County round-table event aims to unite parents, care providers, insurers and others so families can learn about, obtain and then use this coverage, said organizer Susannah Poe.
“There are all sorts of questions from all sides,” Poe said. “The goal is easier access for everyone.”
After years of debate, legislation enacted in 2011 calls on both public and private insurers to extend coverage for applied behavioral analysis, a treatment considered crucial for many children with these neurological disorders. An autism diagnosis can fall within a spectrum of conditions that range from mild to severe and can involve impaired thinking, feeling, speaking and the ability to relate to others.
Poe cites figures estimating that one in 100 West Virginia children have an autism spectrum disorder, slightly higher than the national frequency. Autism, the fastest-growing developmental disability in the U.S., is more common than childhood cancer, diabetes, cystic fibrosis and Down syndrome combined, Poe said. As awareness and screening efforts improve, the number of West Virginia school children identified with autism has nearly quadrupled since the 2001-02 year to 1,474 in 2011-12, according to the state Department of Education.
West Virginia is among 31 states to mandate at least some coverage for this treatment, according to the advocacy group Autism Speaks. Alaska recently became the latest state to join that fold, while Delaware appears poised to follow suit, the group said. Other coverage states include neighboring Kentucky, Pennsylvania and Virginia, according to the National Conference of State Legislatures.
Poe is both a nationally certified provider of applied behavioral analysis treatment and a licensed psychologist. She said the summit could start a lasting coalition to help the insurance mandate operate as smoothly as possible.
“Many of the families that I talk to have no idea that there is autism insurance available,” Poe said. “There’s just no awareness.”
Scheduled speakers include a medical claims billing specialist, a Texas ABA provider and an official from Autism Speaks who has helped other states adopt this coverage.
“We hope the experiences that they will bring will shed some light on how other states have implemented this,” Poe said.
The event will also provide basic information about autism and applied behavioral analysis. Those attending will also form groups according to their role in the process — insurers, providers, parents — and identify concerns or problems with carrying out the coverage law. Addressing and trying to resolve these issues up-front is a key goal of the summit, Poe said.
West Virginia’s coverage mandate has its limits. It does not apply to the self-insured or employer plans with 25 or fewer workers. Medicaid, the state-federal program that insures nearly 159,000 children, does not cover ABA treatment, Poe said.
The coverage law also caps benefits, at $30,000 annually for the first three years of treatment and then at $2,000 monthly until age 18. Children can be diagnosed as early as 18 months. The Legislature made clear with a measure passed this year that the benefit caps apply solely to ABA treatment. Parents and advocates of children with autism had sharply disagreed with insurers over whether the caps applied to that treatment or to all autism-related care. The July 13 summit may offer a chance to mend fences after that fight.
Those planning to attend include officials with the state’s Children’s Health Insurance Program, which covers more than 25,000. The program, known as CHIP, handled 142 claims in the past year for autism diagnosis services, which CHIP covered before the insurance mandate. But it’s received just one request for ABA treatment coverage since that benefit was added to its health plan Jan. 1, officials said.
CHIP officials will also be representing the Public Employees Insurance Agency, which added the coverage to its plan year that began Sunday.