More Missouri children and teenagers with specific developmental or physical disabilities will have insurance coverage for therapeutic care under a House proposal that became law this year.
The language, included in Senate Bill 514, expands Missouri law that mandates coverage for therapy for children with autism spectrum disorder. It includes physical, speech, and occupational therapies. It will apply to plans renewed or enacted beginning January 1.
It was sponsored by Rocheport representative Chuck Basye (R), who said estimates placed the number of children this would impact at between 5,000 and 6,000.
“It was the last thing I ever thought I would get behind because I do not have anybody in my family that has a developmental disability,” said Basye. “My brother-in-law is blind … that’s not really a developmental disability but that played a role in it.”
Basye said when he met Robyn Schelp, President of Missouri Disability Empowerment, and her 11 year-old son Nathan, who has a genetic disorder, he heard their plight and thinking about his brother-in-law put it into context.
Basye also developed a special bond with Nathan, which we wrote about in March.
Schelp worked in the Capitol for three years, often with Nathan at her side, pushing for this legislation. She said the law will now help children who have a broad array of conditions.
“The ones you’re familiar with; Downs syndrome, CP, MS, but it’s also going to apply to kids like my son, whose diagnoses are so rare that you’ve never even heard of them. It’s any developmental disability,” said Schelp, “Which is really one of our goals, is that we start thinking of disabilities inclusively; that we don’t pick and choose who gets funding, who gets the services, but that we make sure that every child with a disability gets what they need to be successful.”
Legislators heard that making therapies more available to children when they are young makes those therapies more effective, and the benefits are seen in other aspects of their lives.
“Just speech alone, speech and language, the ability to communicate your needs is so important for day-to-day functioning, so it gives them that ability just to be independent and to function in day-to-day life, and it gives them confidence to go up and engage with people, so that’s huge, but it also helps them academically,” said Schelp. “This is a big picture thing. We’re not talking just, ‘Oh, great, now he can say the S sound.’ We are talking, he can now go and engage in his daily life with other people, and the same can be said for occupational therapy and physical therapy.”
Making such therapies available to children earlier in life can also lead to cost savings for families and the state.
“For example, speech, some children need help swallowing. They will aspirate. If they get that therapy then great, they’re going to be able to swallow properly, and if they don’t they might end up with pneumonia and end up in the hospital,” said Schelp. “There are a lot of health consequences that come when kids aren’t getting the therapies that they need. Even just the ability to communicate your needs can keep you healthier and safer.”
Schelp said it is difficult for her to think about how different Nathan’s life might have been if this law had been in place when he was growing up. He was limited to one session of each type of therapy a week, early in his life.
“Had we have had this he could’ve started getting speech therapy three times a week at the age of 2 or at the age of 3. We had to wait until Nathan was 9 before he could start getting those therapies. Just the progress he’s made in the last two years … I just think if he would’ve had that when he was 2 and 3, and early intervention when the development is so crucial, where might we be today?” said Schelp. “If we would’ve had just a solid foundation of speech and language therapies at the beginning to help him, I don’t even want to think about where we could be today, but he went until the age of 9 not able to get, fully, the therapy that he needed.”
Schelp went from being so, as she put it, “out of the loop” in state politics she had to look up who her state representative was. She encourages others to be willing to lobby for the changes they want or need in government.
“You really can do this, and if you don’t do it, it may not get done,” said Schelp. “People don’t know what they don’t know, and if you don’t share your story and let [legislators] know what’s happening, they’re not going to be able to change anything.”
All 50 states have an autism mandate. This legislation made Missouri the third state to expand that to cover all developmental and physical disabilities.
Basye’s legislation passed out of the House with broad support, 138-4. That bill, House Bill 399, was eventually vetoed by Governor Mike Parson (R) because of an issue with another measure that was amended to it, but the language became law as part of SB 514, which was signed into law July 11.
Schelp’s organization has other issues that it’s working on and Basye said he would be working with her on a least one of them.