A well-fought battle: Autism insurance bill headed to governors desk

For the faces behind Senate Bill 234, the autism insurance coverage bill, it’s the sweetest thing that the bill’s next destination is the governor’s desk.

But let’s not forget the journey, because this bill’s path to becoming a law goes way beyond Civics 101.

It was no small thing that Decker, a 3-year-old boy with autism, made two trips to Helena this year, to help lobby for the bill that would help his family pay for the autism treatment that has brought him so far. Traveling with his family, parents Charlie and Will and two siblings, the  visits went well, Charlie said. Although those hearings were a little noisier.

Ronan family, the Cotes’, well-documented struggle with autism began when Decker was diagnosed nearly two years ago. Decker was at the severe end of the autism spectrum, once totally consumed by it. Decker has slowly emerged from the dark and foreign world of the condition, turning into a bubbly Head Start student. The improvement came after countless hours of relentless treatment, that includes intense school sessions conducted by teachers, family and friends who implement the costly Applied Behavior Analysis treatment.

The family’s impromptu education in politics and trips in Helena took time they had to find from nowhere. But from the moment the bill entered the legislature, the Cotes made it a point to be there, in Helena, putting faces behind the bill. From the beginning that much they knew was important.

“You can’t get things done by sitting at the coffee shop and griping,” Charlie said. “They (the legislators) can’t lose sight. They know, they’re smart, but they need to see it.”

So the Cotes, Decker’s teachers and supporters made numerous 4 a.m. coffee runs to keep them awake on the treks to Helena to testify.

From there, they learned the finer caveats of how the legislative process works. Watching floor sessions and researching their “competition,” insurance lobbyist, they did their homework. They called the media, made sure they knew their facts, called, e-mailed, researched and took on insurance company lobbyists, all in the name of autism coverage.

It’s no small thing that after making it through two legislative appropriations committees in a year where money was more than tight, the Cotes, of Ronan, are nearing the end of fierce fight for coverage as the bill lands on the governor’s desk.

“What a relief,” Charlie, said of the bills passage in the House. “It just amplifies the whole thing, that finally we’ve accomplished something, and you do feel like it’s made a difference for more than our family.”

ABA technicians like Holly Porter of Ronan, works with puzzles, Mr. Potato Head and snacks to engage Decker in tasks coaching him on motor, speech and other skills in a shop converted into a schoolroom on the family’s ranch. The ABA specialist who oversees the therapy is contracted out of Salt Lake City, Utah because there are no certified specialists located in Montana.

The bills for the treatment like this pile up quickly. Schools fund only a fraction the amount of hours needed to keep Decker moving forward. The autism insurance coverage bill was sponsored by Kim Gillan (D-Billings) and dubbed “Brandon’s Bill,” for another young Montana boy with autism. If signed by the governor, the mandate will require insurers to cover up to $50,000 a  year for children up to 8 years old. Charlie said that the family has been spending close to $30,000 a year on the treatment.

The fiscal notes attached to the bill scared many representatives who didn’t want to ask their constituents to foot any extra costs. Charlie said they used “a dollars and sense and statistics sort of approach” to complement the personal testimonies and make their case. SB 234 supporters were able to convince some that the added insurance costs are a fraction of what untreated sufferers cost the state.

On Feb. 17 the bill passed the Senate Business, Labor, and Economic Affairs Committee, it passed the Finance and Claims Committee on March 23 and continued its run when it was transmitted to the House on March 25. The Cotes were in Helena for every hearing.

“Possibly the most effective help in passing a law would to be to testify before a committee,” House District 11 Rep. John Fleming said. “Personal stories have a great effect on committee members and bring the sometimes technical aspects of a bill back to reality and some clarity. . . Remember, senators and representatives are citizens of Montana too and have lives not unlike the rest of the citizens.”

Charlie said that during her time in the Capital, she saw politicians turn into ranchers, small business owners and parents. Many legislatures with agricultural backgrounds saw themselves in the Cotes.

“We really found they’re a group of good people,” Charlie said.

At one point, a call from a senator days before a crucial vote, alerting them to a possible amendment being proposed by insurance lobbyists. Advocates of the bill were able to approach senators before the vote and kill the amendment. Rep. Fleming, Sen. John Brueggeman and former Rep. Rick Jore were all great helps in helping them through the process, Charlie said. Charlie called Rep. Kendall Van Dyk (D-Billings), who carried the bill in the House, and Rep. Jon Sonju (R-Kalispell) “nothing less than heroes” for their work getting the bill through the House. They made more friends than enemies, even if not all the representatives voted for SB 234.

It’s unclear when the mandate will go into effect if signed. Most likely, it will go into effect in early 2010. The Cotes will examine the bill and the insurance options available to them then. Decker will remain on the same ABA program, Charlie said.

The family will be in Helena next week for a wedding, and they’re hoping they can watch Governor Brian Schweitzer sign the bill then. Lobbying the state legislature may be just the beginning in assuring the essential care is given to every child with autism, Charlie said.

The journey this session has opened their eyes to many avenues to make the right things happen. Despite the exhausting fight, Charlie said she’s energized by the work.

“Tap into the power you have as a citizen,” Charlie said. “If people got as fired up as we did, they could make huge things happen.”