The autism afflicting 10-year-old Conor Marcellus was once so severe he had difficulty speaking and would completely tune out the rest of the world.
Doctors prescribed an aggressive weekly treatment regimen consisting of 10 sessions of speech therapy, five sessions each of occupational and physical therapy ,and intensive behavioral health work.
Today, Conor’s life is dramatically improved, says his father, Ron Marcellus. The boy can tie his own shoes and ride a bike; he is one of the best spellers in his third-grade class in the town of Winhall.
But progress for Conor didn’t come easy — or cheap. Private insurance only paid for a portion of the treatments, so his parents had to reach deep into their own pockets and work overtime to fund the care. “My wife’s an RN. She’d pick up extra work shifts — the midnight shift — and use that money to pay for an occupational therapy or speech session,” Marcellus explains.
The Marcelluses and other Vermont parents see hope in a bill that was still alive in the Statehouse as of press time. As originally written, S.262 mandated that private insurance companies cover autism-related therapies with no separate annual or lifetime limits.
On March 23, the full Senate passed a watered-down version of the bill that scrapped the insurance mandate in favor of forming a committee to study the impacts of requiring autism coverage. On May 4, the House Committee on Health Care and Wellness was expected to restore language that would make the coverage mandatory. The full House would have to approve that change before the legislature adjourns, at the end of the week. The Senate could then either choose to accept the House version, or hammer out a compromise in conference committee.
The theory behind the legislation is that intensive therapy at an early age — between 2 and 9 — is the best hope for children with autism. Because those treatments are so expensive, many autistic children end up missing out, studies have shown. Some parents go the DIY route. Marcellus and his wife, Mary Kate, traveled to Washington, D.C., and elsewhere to meet with autism experts who’ve trained them on how best to nurture their son.
“Then we’d come home and do six to eight sessions per day” with Conor, Ron Marcellus says. “The thing was to keep him engaged. We’d trade off and do these half-hour sessions.
Studies also show that early detection and intervention “saves money in the long run,” says Rep. Anne O’Brien (D-Richmond), a member of the health committee — as much as $200,000 per child over the course of his or her educational career, according to a list of legislative “findings” gleaned from hearings on the autism bill.
Vermont schools provide much-needed support for parents of children with autism spectrum disorders. Special education directors have told lawmakers they now spend an average of $42,500 per autistic student per year — as much as $765,000 per child over 18 years of education. With more than 900 autism-affected children in Vermont schools, that adds up fast.
But for parents like Claudia Pringles of Montpelier, the trouble is finding — and affording — therapeutic care after school.
Pringles’ 10-year-old daughter Katerina is moderately autistic and struggles with speech problems and aggressive behavior. Katerina would benefit from a behavioral therapist at home, her mother says, but the family’s CIGNA health insurance plan wouldn’t cover the cost, which can run upwards of $75 per hour.
“It’s great at school, but I don’t have that help at home,” Pringles says. “We’ve had personal care assistants, but they come and go. Katerina can be aggressive, or run away and throw things.”
Statistics on the prevalence of autism have stoked serious concern in recent years. In December, a U.S. Centers for Disease Control and Prevention study found that autism had reached its highest incidence on record: One in 100 American 8-year-olds, and one in 70 boys, has an autism spectrum disorder, ranging from severe autism to milder forms such as Asperger’s.
Later Tuesday, the House Committee on Health Care favorably passed the autism insurance bill on a vote of 10 to 0, with one member absent, according to Rep. Anne O'Brien (D-Richmond). The final product was a compromise that mandates private insurers cover autism spectrum therapies for children ages 18 months to 6 years, with no annual of lifetime limits, but does not extend to older children with autism. The bill, which stops in the Appropriations Committee before hitting the House floor on May 6, also requires further study of the costs to the state and public education system for implementing the changes.
The bill will cost state government money because it extends coverage to families on the state employee health plan, but O'Brien said the Joint Fiscal Office had not yet crunched the numbers.