Developmental disability insurance mandate bill gets a hearing in Missouri House

JEFFERSON CITY — A recent legislative discussion about expanding insurance coverage for children with disabilities was rare for a few reasons.

For one, it's a feel-good story stemming from a mother's desire to get therapy for her son. For another, there might have been more kids than lobbyists in the hearing room when lawmakers took up the bill, which could cheer advocates for people with developmental disabilities and worry budget officers of insurance companies.

The bill, spearheaded by a Columbia woman and sponsored by two mid-Missouri lawmakers, went before the House Insurance Policy Committee on Tuesday.

Under the legislation, private insurance companies would not be able to limit coverage or deny reimbursement for treatment of disabilities that are cognitive, emotional, mental or developmental in nature. It also grants eligibility for certain services to any person, not just children.

Autism was often mentioned at the hearing, but several witnesses were quick to point out that people with other conditions that benefit from this kind of treatment.

Nathan Schelp is the 9-year-old son of Robyn Schelp, who is the prime mover behind the bill. Nathan sat on his mom's lap while she explained to the committee that he has an unknown genetic disorder that has limited his development to that of someone about half his age.

He wasn't able to get therapy that could help him in his early years, which led to meltdowns, Robyn Schelp said.

Now, through a combination of providers, Nathan is able to go to four sessions a week for speech therapy, one for physical therapy and another for occupational therapy. But this is not a permanent arrangement.

"The progress he's made is remarkable," she said. "He would not be able to sit on my lap and talk to you like this before we had these therapies."

This type of therapy is known as "habilitative" care and focuses on building human basics like physical coordination and verbal communication.

There often is a cap on how many sessions per year will be covered. Schelp relies on a combination of private insurance, the taxpayer-funded Boone County Family Resources and free service provided by students at the University of Missouri-Columbia. But not everybody lives in an area that's as rich in potential resources.

Medical professionals such as pediatrician John Wilson and behavioral analyst Sungwoo Kahng, who said this kind of therapy is proven to be effective, testified in support of the bill.

Also joining Schelp were parents like Molly Myers, who testified while caring for some of her children, including her 6-year-old son Will, who is missing one-third of his brain. Myers described the challenge of obtaining funding, which has led her family to sell their home and downsize in order to pay for care that she hopes will let Will be independent.

Shannon Cooper, a lobbyist testifying on behalf of the Missouri Insurance Coalition and America's Health Insurance Plans, had the unenviable task of testifying against legislation supported by a roomful of families.

Cooper told the committee chair, Rep. Kevin Engler, that his clients weren't opposed to studying how much it would actually cost to implement this.

"That's the direction we'd like to go," Cooper said. He also noted he'd like to see language included in the bill that might limit treatment to "medically necessary" therapies.

Another problem — acknowledged by supporters and opponents alike — occurs when people without autism receive autism diagnoses in order to get coverage for treatment.

Cooper didn't say this practice was widespread but acknowledged that it happens. And when it does, it leads to higher costs, he said.

About 93 percent of individual insurance policies in Missouri provided coverage for autism and about 98 percent of insured individuals were covered for autism-related treatment, according to a report from the Department of Insurance, Financial Institutions and Professional Registration in February.

Intentional or apathetic misdiagnosis happens, Engler said. It can make life easier for the doctor to give a favorable diagnosis to a patient, and it doesn't always amount to fraud, he said.

In previous interviews with the News-Leader, Schelp has acknowledged that her proposal had a long, uphill path to becoming law.

Engler said the bill is a few years away from having a chance. One task coming up will be determining how much it will cost to insure those for whom therapies currently are not covered, he said.

The trick will be keeping premium increases relatively low and not pricing too many people out of coverage, Engler said.

Wanted: Missouri lawmaker to be a 'champion' for kids with developmental disabilities

Found: Missouri lawmakers to advocate for kids with developmental disabilities