Mother works to help families of autistic children

Lorri Unumb did it for the parents who couldn't afford to pay for the intensive therapies, for the people who delivered pizzas on the side to put a dent in mounting therapy bills; and she did it for Ryan.

The Mount Pleasant attorney and mother of a child with autism joined forces with other moms to battle insurance companies at the Statehouse for the past two years to win coverage for treatment of autism and its spectrum of disorders.

Insurance companies have traditionally denied coverage for the spectrum disorder believing it to be a psychiatric condition, said Walter Jenner of the Autism and Developmental Disabilities Monitoring program at Medical University of South Carolina.

Doctors now know that's not true, but autism's cause is still unknown, and there is no cure.

Studies have shown that a therapy called applied behavior analysis improves the lives of children and families with autism, but the intensive, one-on-one behavior training costs $50,000 to $75,000 a year, Jenner said.

Unumb and her husband downsized, buying a less expensive home to pay for their son Ryan's treatment. The cost for one year of treatment is equivalent to Unumb's annual salary.

The spectrum disorder affects children to varying degrees. Ryan, 6, has a more profound case but has seen benefits from applied behavior analysis that his family's insurance plan won't cover.

In 2005, Unumb, then a professor at the Charleston School of Law, planned to spend the summer writing a scholarly paper presenting a solution to the insurance coverage issue when she decided to put her proposal in action.

Unumb remembered thinking, "Why waste time writing an article and just write a bill and do it."

Unumb and two other mothers, Marcella Ridley of Lexington and Lisa Rollins of Saluda, united a group of parents they called the Ryan's Law Grassroots Gang.

Unumb wrote new legislation, and all mothers contacted their representatives making a plea for change.

After two years of hard work the law passed. But Gov. Mark Sanford vetoed the bill.

With just one day left in the 2007 session to approve legislation, Unumb and other mothers stayed up all night e-mailing everyone in the grass roots gang telling them to come to the Statehouse the following day. That next morning about 70 parents and some of their children stopped legislators in the hallways asking them to override the veto.

The Senate immediately agreed, but the House brought the bill to the floor for an official debate.

Unumb worried, but after the exchange, the house voted unanimously to override Sanford.

"It was a big deal, it doesn't happen often," Unumb said. "Legislators were laughing, marveling at the unanimity and they turned and gave us a standing ovation and applauded us. … I was up there bawling uncontrollably."

Though the battle is over in South Carolina, Unumb has been inundated with requests from parents of autistic children in other states who want to change their laws too.

She also has accepted requests to serve on the advisory boards of Family Connections, a local organization for families with disabled children, and Autism Speaks, a national autism organization.

The bill provides no relief to Unumb, Ridley or Rollins. Their families' health plans are self-insured and those types of plans are not regulated by the state and can't be forced to comply with the law.

Unumb said she hopes that self-insured plans will follow suit to stay competitive.

Proponents of Ryan's law estimate that it would cover 25 percent of the state's autistic children. The bill goes into effect July 2008. That coupled with a Pervasive Development Disorder program approved in 2006 could cover hundreds more children.

In 2006, lawmakers approved dividing $3 million into $50,000 chunks and awarding them to South Carolina families through a lottery. The funds were part of a Pervasive Development Disorder program that could be used for early intervention and case management.

This year the senate appropriated $4.5 million more to the PDD waiver program, which would receive federal matching funds.

"She changed the lives of a lot of people," Jenner of MUSC said of Unumb.

In September, Unumb held a summit in the Mount Pleasant Library. Parents of children with autism who want to change their state laws flew in from across the country to learn what Unumb had to share.

As Unumb prepared for the summit she compiled a huge packet of materials, including the first letter she wrote to reach South Carolina parents of autism.

"I'm a professor of the Charleston School of Law and I have a 4-year-old with autism," Unumb read from the page then paused. "Now he is 6, it's amazing, it's been a long journey."

Reach Jessica Johnson at jjohnson@postandcourier.com or 937-5921.