Lorri Unumb and her husband faced few options as the costs for her 9-year-old autistic son’s therapy accumulated. 

That therapy was running $70,000 to $80,000 a year, so the Unumbs sold their house and cut back on their expenses.

Lorri Unumb, an attorney in South Carolina, played a key role in helping her state’s legislature pass a bill to hold state health insurers accountable for autism therapy.

“It’s the most unbelievable roller coaster,” said Unumb, senior policy advisor and counsel for Autism Speaks, an advocacy group based in Washington, D.C. "You’re at the depths when you get the diagnosis, you’re riding a little higher when you realize when there’s this treatment, and then you plunge again when you realize how much it costs and that insurance doesn’t pay for it.”

Unumb and autism experts joined legislators and parents of autistic children at a public hearing Monday to discuss passing legislation that would require Michigan insurers to cover autistic treatment and therapy.

Senators Randy Richardville, R-Monroe, and Liz Brater, D-Ann Arbor, presided over the two-hour hearing at Eastern Michigan University’s Autism Collaborative Center. Richardville, Brater and a full classroom of educators, parents and family members of autistic children listened to several researchers discuss the growing autism epidemic and how states are helping parents alleviate their rising health insurance costs.

According to the U.S. Centers for Disease Control, one out of every 110 children is affected by autism, which impairs a person’s ability to communicate, learn and socially interact with others. It is the fastest growing developmental disability in the nation.

“The real crux of the argument is then how do we justify this from a cost standpoint,” Richardville said. “People are looking more and more for a good return on their tax dollar, and they don’t think the government is giving them a good return. So what we have to do is put the number together that are accurate and say if we invest in this way, the government, the school system, the community health centers and hospitals are going to be lower cost to the taxpayers, and we’ll be better off in the long run.”

A recent study found Texas would save up to $771.5 million in special education costs within the first 10 years of passing autism insurance reform legislation.

Estimates suggest similar reform in Michigan could save $3 billion for therapy for the 15,000 autistic children in the state during their school years from ages 3 to 26. The estimate rises to $14 billion in state savings when considering the lifetime costs for the 15,000 children.

“I have personally advocated in most of these states, and I have seen the same arguments from the opposition in state after state,” Unumb said. “They’re going to say insurance premiums will go up so much that people will start dropping coverage. That has not bore out in other states.”

For Ann Arbor area parents like Barb Byers, co-president of the Autism Society of Washtenaw County, the legislation reform would help tremendously. The Byers' story is similar to that of Unumb and her husband.

The Byers could pay for their two sons’ therapy sessions, but it required them to take out a second mortgage and go through their savings and some of their retirement funds. 

“I just wish they would have a real hearing out of it,” Byers said. “That’s all we’re asking for is to be heard. People don’t understand that this isn’t covered. Because of the specificity of these treatments, the insurance companies do tend to say, ‘Oh yeah, we cover autism,’ but then they might cover diagnosis and specific treatments they keep denying them.”

Brian Vernellis can be reached at brianvernellis@annarbor.com.