Autism Advocates Hope Third Time’s the Charm
A bill to cover autism treatment has been passed twice by the North Carolina House of Representatives only to die in the Senate. Now a third bill has made it through the Senate.
By Rose Hoban
For advocates wanting insurers to cover some expensive autism treatments, it’s been a long slog.
They’ve been pushing lawmakers in the North Carolina General Assembly for years to consider a bill that would compel those insurers to cover behavioral treatments for autism. The first bill was filed in 2009 and all it did was create a committee to study the issue.
It took from then until Tuesday of this week for the state Senate to pass a bill that makes it easier for families to afford some of the best behavioral treatments for their children.
“The autism movement had been up here numerous times to plead for some relief for their children, and it didn’t seem like anything was possible,” said Sen. Louis Pate (R-Mount Olive) during the short debate before a vote was taken on Senate Bill 676, which covers up to $40,000 per year of treatment.
But the Senate, after years of resisting passage of this bill, has finally given it the green light, and advocates are hopeful many more families will be able to afford treatment for their autistic children.
Insurance companies will cover the cost of having a child diagnosed with autism. But once that diagnosis is made, getting that same insurer to pay for treatment is harder.
The treatments in question, collectively called adaptive behavioral treatments, use positive reinforcement and repetition – sometimes extreme repetition – to help break through communication difficulties children with autism have.
But even through these treatments have a solid body of evidence showing they help kids with autism learn basic skills, insurers have argued the interventions are more education than health care. So insurers have refused to pay.
Meanwhile, the therapies are expensive, often requiring one-on-one treatment for hours a day, several days a week. One treatment, called applied behavioral analysis, can cost as much as $70,000 per year.
Selene Johnson, who runs ABC of NC Child Development Center in Winston-Salem, said one-on-one therapy can cost up to $60 per hour.
For most parents, the cost comes out of pocket.
“I met with one mother who has three children and they were using the college funds for the other two children for this one child to attend this autism treatment center,” said Sen. Joyce Krawiec (R-Kernersville), who visited Johnson’s facility last year.
Krawiec called the stories she heard from parents “heartbreaking.”
Advocates have been coming to the legislature for years now, looking for some help getting the treatment covered. And they continually hit the same roadblock: Many members of the General Assembly don’t like the idea of mandating insurers to cover specific treatments.
Insurers have traditionally argued that mandates raise the cost of insurance for everyone. Advocates counter that the estimated cost is only a couple of bucks a year for each person with insurance, but that in the long run covering treatment means less cost to society in the form of less spent on special education and social services.
“In the states that have passed legislation, where they’re seeing claims data, the insurance costs where near that amount on average,” Johnson said.
Over the past few years, House members have been more willing to work on the bill. They passed a bill in 2013 and sent it to the Senate, where it sat without action for a year.
Then in 2014, the State Health Plan, which covers state employees and their families, decided independently to offer coverage for adaptive behavioral treatments. That took effect at the beginning of this year.
In 2014, the House repackaged the bill and passed it again; still the Senate didn’t move on the bill.
But this third bill, introduced in the Senate last month, was the result of some compromises and a lot of pressure from constituents of members of the Senate.
“I had family members, I had children that came to my office every day when they had their legislative day,” said Sen. Wesley Meredith (R-Fayetteville). “I did not have any lobbyists that were paid to come see me. I had the people that this affects come talk to me, and it touched my heart.”
This year, Tom Apodaca (R-Hendersonville), the powerful Senate Rules Committee chairman, got behind the idea and agreed to shepherd the bill through the Senate.
“In essence, this bill gives more options to parents. It allows the full range of treatments for autism to be prescribed by a doctor or a psychologist,” he said on the floor Tuesday morning. “Before … treatments were not covered in North Carolina health insurance policies. The bill no longer allows these types of treatments to be denied on the basis of its education nature.”
Apodaca acknowledged that everyone involved made some compromises.
“We need to thank all the stakeholders and staff who really worked on this for the last year and a half. and had numerous meetings,” he said. “We love to kick insurance companies, but this time I think we need to give a shout out to our insurance companies, because they came and sat down and tried to find solutions.”
“Ultimately it was an ability to work things out among people who traditionally oppose bills like this,” said Jennifer Mahan, director of government relations for the Autism Society of North Carolina.
Still a ways to go
“I think the big issue is behind us,” said Rep. Chuck McGrady (R-Hendersonville), who first introduced a bill to cover the autism treatments in 2013.
But McGrady said the companion bill that he’s introduced in the House has several significant differences.
Under state and federal law, insurers cannot treat mental illness differently from physical illness. So in the Senate bill, in order to cover the treatment, autism gets redefined as not a mental illness, which allows for insurers to limit the benefit to a total of $40,000 per year.
“We can’t roll back the benefits provided [under parity], and that’s going to be the issue that we are going to have to resolve between the House and the Senate,” said McGrady.
He also said his bill would allow for more kinds of professionals to perform the therapies.
“It’s likely to end up in conference committee,” McGrady said. But he also said he’s confident the bill would finally make it through both chambers.
When asked about the length of time for the bill to pass, McGrady was sanguine.
“Sometimes these things take that long,” he said.