Advocates looking to convince lawmakers to pass the autism insurance measure roamed the halls of the General Assembly to speak to legislators early in July.
Advocates looking to convince lawmakers to pass the autism insurance measure roamed the halls of the General Assembly last summer to speak to legislators. Photo credit: Rose Hoban

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By Rose Hoban

After years of waiting, families of kids with autism may finally get insurance coverage for treatment.

A bill that would have North Carolina insurers reimburse for some evidence-based treatment is finally looking like it may pass both chambers of the General Assembly – but not before withstanding significant opposition and leaving advocates angry.

Advocates looking to convince lawmakers to pass the autism insurance measure roamed the halls of the General Assembly last summer to speak to legislators. Photo credit: Rose Hoban

A bill similar to the Autism Health Insurance Coverage bill made it through the House of Representatives in 2013 and again in 2014 only to hit a stone wall in the Senate. There, leaders wouldn’t move the bill, saying they did not want to add a mandate onto North Carolinians’ insurance policies.

But this year, the powerful Senate Rules Committee chair, Tom Apodaca (R-Hendersonville), got behind autism insurance.

As he presented the bill to his chamber on April 28, Apodaca said participation by insurance companies, which had opposed the bill in prior years, helped get the bill over the hump.

“They came and they sat down and they tried to find solutions,” said Apodaca, praising the companies’ willingness to negotiate.

But Apodaca’s compromise bill had several significant changes that made it unpalatable to some advocates, and a split developed.

Applied behavioral therapy

In the old bills, autism insurance would have covered only treatment with applied behavioral analysis, an intensive therapeutic treatment that uses positive reinforcement and repetition – sometimes extreme repetition – to help break through the communication difficulties these children have. The treatment can cost tens of thousands of dollars each year.

This year’s bill covers a broader set of therapies, all evidence-based, including applied behavioral analysis and some developed by the local TEACCH program.

[pullquote_right]Did you know NC Health News is a non-profit? Last year, a third of our funding came from readers. Please consider a donation today![/pullquote_right]But the rub for some advocates is that in order to get the coverage, the Senate bill carved out autism from the rest of the mental health disorders covered by insurance in the state. Under SB 676, other mental health treatments for a child with autism won’t be covered on par with medical coverage.

The House bill does not carve out other mental health treatments.

During Tuesday’s House Insurance Committee meeting, Rep. Chuck McGrady (R-Hendersonville), who has shepherded the autism bill in the House for several years, was visibly disappointed that his version of the bill was not going to prevail.

“Politics … is the art of the possible,” McGrady said. “And this bill is possible.

He said the most significant difference in the bill he introduced and the Senate bill related to “autism being carved out as a mental health illness.”

“I view this bill as incrementally getting us to where we need to be,” he said, noting that his earlier bill passed the House in 2013 by a vote of 105-7. “We’re long past arguing whether there should be insurance coverage for autism.”

Bruising fight

But in previous years, a bruising battle ensued over whether there should be insurance coverage for autism – a battle that was fought by local advocates, including the Autism Society of North Carolina, the Arc of North Carolina, the state pediatric society and others.

Rep. Chuck McGrady (R-Hendersonville)

Lending their national weight to the fight has been Autism Speaks, an advocacy group that has pushed for similar insurance coverage in 42 other states.

When the Senate stonewalled the insurance bill in 2014, Autism Speaks responded by criticizing the Senate on twitter, especially Senate leader Phil Berger (R-Eden), for not bringing the bill to a vote. Meanwhile, local advocates were more subdued.

On Tuesday, a press release supporting this year’s bill was splashed with the logos of nine organizations. Autism Speaks’ logo was not among them.

Local advocates expressed their pleasure, while acknowledging the shortcomings of the bill.

“All of these policy changes have happened incrementally,” said Sally Cameron, head of the North Carolina Psychological Society. “When North Carolina passed its own mental health parity bill, there were caveats on it, just like there is here.”

Advocates for Autism Speaks were more pointed in expressing their disappointment.

“We’re happy to have some foreword motion on the bill,” said Lorri Unumb, vice-president for governmental affairs for Autism Speaks. But, she added, “there are some things in there that aren’t great for autism families.”

Unumb pointed out that in addition to the mental health carve-out, there are about a million people in North Carolina who won’t be covered under this bill: those who buy their insurance in small markets or are covered by small employers exempted from having to offer the coverage.

“We’re never going to stop trying to get it just right, get the best possible deal for families,” she said. “We think the mental health parity protections make it better. But as I said, we understand the incremental approach.”

“The big lift here was the insurance mandate,” McGrady said.

Fight another day

Advocates vowed to return to the legislature in several years, once the state has had some time to see how the law plays out in terms of cost and the effects on insurance premiums.

McGrady said he’s used to the incrementalism at the legislature, and to getting a few slices rather than the “whole loaf.”

Jennifer Mahan, director of government relations for the Autism Society of North Carolina, said the evidence from other states is that the autism insurance doesn’t change premiums much. During the hearing, Unumb told lawmakers that the average claim is for about $14,000 per year.

Mahan and McGrady said they believe there’s a good chance that in a few years expanding the benefit and eliminating the mental health carve-out will be uncontroversial.

“I’ve found that to happen,” McGrady said. “Something will be just wildly controversial this year, and then three years later you can’t find anybody that opposed it.

“Meanwhile, you’re sitting there saying, ‘I know I’ve still got the bruises from that fight.’”

“I hope that’s the way it works,” Unumb said.

Editor’s note: The article originally stated Autism Speaks took out newspaper ads criticizing the Senate, which is incorrect. Ads run in North Carolina newspapers criticized Blue Cross and Blue Shield of North Carolina for opposing the 2014 bill.

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