For people who don’t know, there is something called “living the autism life.” Attorney Lorri Unumb of Lexington lives it every day.
And it’s not easy.
Unumb’s 7-year-old son, Ryan, was diagnosed with autism in 2003. While some children with the brain-development disorder can speak and may simply appear socially awkward, Ryan is more severely affected.
He cannot talk for the most part. He can understand instructions, but cannot explain himself when he needs to. When his frustration boils over, Ryan loses control in what the family refers to as “meltdowns.”
Unumb said that makes it “very difficult to live any semblance of a normal life.”
Trips to restaurants or anywhere in public involve much forethought. Unumb and her husband, Dan, cannot predict how Ryan will react in different settings.
One of the trickiest aspects to manage — aside from the stares or glares of disapproving passersby — is to get people to understand that even though Ryan looks normal, he is not your average kid.
“Every single decision of every single day was, and still is, influenced by having a child with autism,” said Unumb, a former Charleston School of Law professor.
“People stare at you, obviously thinking that you have no control of your child,” she said. “When he was first diagnosed, I told myself that I’d explain that Ryan is autistic and what that means, but by the time I got to the word ‘autism’ I’d burst into tears. It’s difficult.”
The family even had trouble taking Ryan to services.
“I thought, ‘What is wrong with our society if we can’t take our child to church?'” said Unumb.
In 2005, Unumb sat in her office at CSOL, contemplating what type of law review article she wanted to write over the summer.
She decided to focus on insurance reform for individuals with autism.
An estimated 560,000 individuals age 21 and under are autistic, according to the Centers for Disease Control.
But proven behavioral therapies endorsed by the U.S. surgeon general are often not covered by insurance companies, Unumb said.
Insurers commonly rejected claims for autism treatment in the past by calling it too expensive or an educational — not medical — necessity, Unumb said.
Those treatments can cost families up to $75,000 per year, she added.
The Unumbs’ insurance plan does not cover Ryan’s treatment. Neither does the insurance plan for Marcella Ridley, a Columbia parent.
Ridley’s son, Winston, 7, was diagnosed with autism when he was just shy of his second birthday.
“Doctors told me that he was a hopeless cause and ‘would never be a contributing member of society,'” Ridley said.
But within his first two weeks of therapy, Winston had already mastered 12 symbols of sign language.
Today, Winston is preparing to enter first grade. His parents have requested that he participate in general education — not special education — classes this year, with the help of a “shadow” assistant if necessary.
But with no insurance coverage, the family has spent upwards of $500,000 for Winston’s treatment over the years, according to Ridley.
Both Ridley and Unumb recognize that their families are fortunate, with high incomes that make paying the out-of-pocket expenses possible. Ridley’s husband is a physician; Unumb’s husband is an attorney like her.
But Unumb knew that wasn’t the norm for many families. She remembered a lady from a support group whose husband was working two jobs to afford just two hours of therapy per week for their child.
Therapists recommend 30-40 hours each week for the treatment to be effective, Unumb said.
“How horrible is it to know that there’s a therapy out there and you’re completely unable to access it for your child?” she said.
Unumb had begun research for her law review article. Then she felt a wave of inspiration.
“There I was, gathering my information together, and I suddenly stopped and said, ‘Scrap this proposal — I’m writing a bill,'” she said.
But there was a big hurdle to overcome: She had no idea how to do it.
But, as a teacher of legal writing and research, she was pretty sure she could figure it out.
And so she wrote Ryan’s Law.
The law would require state-regulated insurance companies to cover therapies for individuals with autism.
Seventeen states across the country, including Georgia, have adopted similar legislation. Autism advocates are lobbying for other states to do the same.
Once the bill was written, Unumb contacted state Rep. Nathan Ballentine (R-Lexington and Richland) and state Sen. Ray Cleary (R-Charleston, Georgetown and Horry) to ask for their support. Both agreed.
Ballentine, the father of then 1-year-old and 2-year-old children, was first drawn to Ryan’s Law by parental instinct.
“When you imagine two kids in front of you, one with cancer and one with autism, and the [insurance company] takes care of the cancer kid but not the autistic one, it gives you pause to think, ‘Wait a minute. That’s not right,'” he said.
Eighty members of the House co-sponsored the bill. But opposition came from insurers and employers’ groups who decried the idea of the state creating mandates for insurance coverage.
“I’m a Republican and I don’t like mandates, either,” said Ballentine. “The buzzword was that [the treatment] was ‘the Cadillac of therapies’ and that there are cheaper alternatives.”
While debate swirled in the House and Senate, Unumb was busy marshalling grassroots support, pulling in parents from across the state and urging them to call their legislators and join her in front of the State House.
Plenty of hours were spent away from home, which meant that Unumb’s husband was charged with working full time and taking care of Ryan and the couple’s two other sons, Christopher and Jonathan.
He also managed to help his wife craft the legislation and meet with insurance companies during the two-year effort to get the bill passed.
Ridley was also a lead advocate in the group of parents that Unumb dubbed the “Ryan’s Law Grassroots Gang.”
“We had mounds of studies proving the efficacy of the treatment, lots of public support and a lot of legislators who were being educated about autism.
“But in the long run, I think it was the letters from across the state that were critical. If a legislator from Cheraw meets with me and I have something important to say, that’s one thing. But if he meets with me and then gets 10 letters from his constituents, that’s something else,” Ridley said.
To pass, or not to pass?
The 2007 legislative session was coming to a close, and Ryan’s Law was teetering on the edge of acceptance or rejection.
Gov. Mark Sanford panicked the Grassroots Gang with a last-minute veto of the bill.
Unumb jumped on the phone and e-mailed as many people as she knew, begging them to come to the State House the next day for one last shot to make Ryan’s Law a reality. Around 75 people arrived en masse.
Ryan’s Law overcame the veto with unanimous votes in the House and Senate.
“It was one of the best days of my life,” said Unumb, who has since gone on to win national recognition for her work on Ryan’s Law.
But there’s a twist: Ryan’s treatments still won’t be covered.
The Unumbs have a self-funded insurance plan, which is not covered by Ryan’s Law.
“The irony and beauty in all of this is that Lorri doesn’t even get the benefit from the law that she created, and that’s what’s so refreshing,” Rep. Ballentine said. “Here’s a lady fighting not for her kid, but for other parents out there with kids with autism.
“This is what it’s about. We’ve got people fighting for a cause that’s bigger than them.”
Ryan’s Law took effect last month.
Questions or comments may be directed to the writer at [email protected].