WINSTON-SALEM, N.C. -- Families in North Carolina are pushing for insurance reform that would allow children to access what they call "the golden standard" of treatment for autism.
House Bill 497, Autism Health Insurance Coverage, passed through the state House last year with a vote of 105-7.
Advocates hope the Senate will hear the bill during the current short session.
Kyle and Bobbie Robinson are from Greenville. Their son Samuel will be three years old in August.
Samuel was diagnosed with autism at the UNC Center for Development Disabilities in April of 2013. The Robinsons immediately sought the best treatment for their son. Doctors recommended Applied Behavior Analysis (ABA therapy).
"I remember thinking will he ever say 'mama?' Or will he ever say 'I love you?'" Bobbie explained. "With this type of therapy, if we could somehow find a way to make it work financially, Samuel could possibly improve."
The couple soon learned ABA therapy was hard to access in North Carolina and even harder to afford with treatments costing around sixty thousand dollars per year.
Kyle still lives and works full time in Greenville. Bobbie took a medical leave from her teaching job and packs up every Sunday night to come to Winston-Salem for Samuel's treatments during the week.
Samuel's therapy is at ABC of NC Child Development Center and Autism Clinic in Winston-Salem, one of only about three centers in the state offering such intensive and specific therapy for children with autism.
The Robinsons say since last August, their son has improved dramatically with ABA therapy. His communication is evolving, his behavior is better and he says "mama" all the time, Bobbie pointed out. Samuel's smile says it all.
In the meantime, they've borrowed money and started fundraisers to help with the costs of Samuel's treatments because most state medical insurance companies do not cover ABA therapy.
Selene Johnson is the executive director of ABC of NC.
"So far 37 states have passed autism insurance legislation,” she said. “What that does is it basically requires insurance companies to cover evidence-based treatments for autism, like ABA therapy."
She says the legislation would be cost-effective for North Carolina. "With early intensive intervention, thousands of dollars per child can be saved. So there's no cost to the state to pass the insurance legislation, but it saves the states millions of dollars in the long run."
The bill would also allow for Behavior Analyst licensure for experts offering this treatment. Licensure would save money for facilities and attract more behavior analysts to practice in North Carolina.
"If this insurance bill is passed, centers like ABC of NC will pop up all over the state," Bobbie pointed out. "It could prevent families from spending being split up like ours."
The bill would also benefit military families stationed in North Carolina, Johnson said. Currently some cannot be stationed here because of the restrictive laws.
Kyle and Bobbie hope Samuel can grow up to be a working, contributing member of the community. They believe offering insurance coverage to families like theirs will allow all children with autism to access the best care possible.