An organization dedicated to helping individuals with developmental disabilities is trying to get legislation through the Missouri statehouse.

Missouri child with a developmental disability

The group – MO Insurance Coverage for Developmental Delays – wants insurance companies to be required to cover the cost of therapy for those with conditions such as Down syndrome and cerebral palsy.

Spokesperson Robyn Schelp says there’s a gaping hole for individuals who have trouble learning basic skills like walking, talking and eating.  “If you read the language in your insurance, it will say we cover therapies related injury, stroke” said Shelp.  “Mine has cancer in there.  But a lot of them will not, and some of them are starting to say autism, but even then they still don’t cover other developmental disabilities.”

Currently, therapy for developmental disabilities is at least $100 an hour, with many individuals requiring three-to-four different sessions a week.  The treatment is needed for kids between the ages of 0-3, but should be sustained throughout life because the conditions are never cured.

Schelp says the lack of therapy in the early stages has a compounding effect.

“Kids aren’t getting the therapies they need” said Schelp.  “And then we have more kids going into special ed. when they hit the age of three at the schools because they didn’t get the early intervention that they needed.”

Shelp says the Affordable Care Act is starting to offer coverage for developmental disabilities, but she doubts the federal health law will last much longer.

The state has an existing program, which is mandated through the federal government, called “First Steps”, but requires children with disabilities to be behind the skill levels of normal kids by 50 percent.

Schelp says, as a result, many children get left behind.  “If you have a 40 percent delay, which is also very significant, you don’t get anything.  So we have a lot of children who are 0-3 who no therapies when they desperately need these therapies to learn basic life skills.”

The group has met with two Missouri House members who plan to introduce proposals requiring insurance coverage for the disabilities.

It may also be trying to establish itself in the minds of lawmakers.  According to its website, the organization has also met with Missouri’s new Republican State Treasurer, Eric Schmitt, who was a state Senator.  Schmitt is the father of a child with Autism.

After legislation was passed in a previous session to deal with dyslexia, a legislative task force met in October to formulate a plan for schools to accommodate students with that learning disorder.  It’ll take a year for the plan to be implemented.

Schelp, who has a nine year old diagnosed with three developmental disorders, is under no illusion lawmakers will quickly pass a measure dealing with her organizations cause.  She says she’s been told it’ll be an uphill battle.