FRANKFORT — Tucked into the flurry of legislation that passed the General Assembly last week was a landmark autism bill that will mean more Kentucky children with autism spectrum disorders will receive the intensive treatment they need.
The Senate on Thursday gave unanimous approval to House Bill 159, which requires large group and state-employee insurance policies to provide a maximum annual coverage of $50,000 for children ages 1 to 6 with autism. Children ages 7 to 21 would be eligible for a maximum benefit of $1,000 a month or $12,000 a year for autism treatment.
The House unanimously passed the bill in March. It now heads to Gov. Steve Beshear's desk, where it is all but certain to be signed.
Kentucky is now one of 18 states to have some form of mandated insurance coverage for children with autism. It's difficult to say how many children would benefit from the legislation. There's no accurate information about the number of children with the disorder in Kentucky or whether their parents have the type of insurance covered in the bill.
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The bill's backers say it's a watershed moment for the treatment of children with autism spectrum disorder, a complex condition that affects the ability to communicate and develop social relationships.
"The stars were truly aligned," said Rep. Scott Brinkman, one of the co-sponsors of HB 159 and the father of an autistic son.
The bill specifically says applied behavioral analysis, an expensive but effective treatment for children with autism, will be covered. Currently, no insurance plan is required to pay for the treatment, which usually means one-on-one work with a certified behavior analyst and can cost up to $70,000 a year. The earlier a child is treated, the better the outcome, research shows.
Parents of children with autism have had to pay most of those expenses out of pocket, which for many means going into debt. Some parents simply can't afford the treatment, and their kids have to go without.
"Most people can't afford that," said Janet Pope, whose son is autistic and who lobbied for HB 159.
But besides providing a means to pay for treatment that has proved to be effective, the bill could be a tool for economic development. It's difficult to find behavioral analysts who provide applied behavioral analysis for autism. Because there is legislation that would provide a means for payment, more therapists might come to Kentucky, backers of the bill say.
"There's a waiting list for services right now," said Anne Gregory, a supporter of the bill and Kentucky chairman of advocacy for Autism Speaks, a national non-profit. "And unless you live in Louisville or Lexington, it's really hard to find this treatment."
Moreover, many parents with autistic children have left their jobs in Kentucky to find jobs in other states where there is insurance coverage. This will keep more highly qualified professionals in Kentucky, the bill's supporters say.
During a legislative session in which few bills were passed, HB 159 was an anomaly. Previous attempts by the autism community to pass bills that would require insurance companies or Medicaid to pay for treatment have failed.
This time, many people worked to get the bill passed.
Gregory and Pope spent 15 to 20 hours a week from January to March knocking on legislators' doors and presenting their case.
But Brinkman, R-Louisville, also credits Rep. Jeff Greer, D-Brandenburg, the sponsor of the bill, who worked with insurance companies and dogged the Senate to pass it.
Brinkman also worked with the insurance industry and acted as a liaison with the autism community. Brinkman, who was first elected in 2001 and will retire from the legislature this year, has done more to educate his colleagues about autism than any other legislator, Greer and others have said.
During Thursday's Senate vote, several senators voted for the bill in honor of Brinkman, who has pushed for autism-related bills for several years.
But Brinkman said that, unfortunately, autism is no longer rare. Many legislators now have family members who have an autism disorder. Current statistics show that one in 110 children and one in 70 boys have a form of autism.
"Everybody knows somebody who has autism," Gregory said.