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Families with autistic children struggle as legislators haggle over insurance

This article first appeared in the St. Louis Beacon, Jan. 17, 2010 - When a tussle with 6-year-old Lucas sent his father Marty Johnson of O'Fallon, Mo. to an urgent care facility, Johnson came to a realization. Soon he would no longer be able to control his son physically.

Lucas Johnson has autism spectrum disorder. He is intolerant of change or new situations. That's what led to the struggle with his dad at the store one day in 2007. Lucas, all of 60 pounds then, tried to throw himself to the ground. His dad, who is 6'4" and 185 pounds, tried to keep Lucas from bucking out of his strong arms and crashing to the concrete.

While he saved Lucas from injury, Johnson wasn't so lucky. He sprained his forearm and wrist.

"It was my first realization, that, 'Wow, this is going to get a lot harder as he gets bigger,'" Johnson said.

FULL TREATMENT: $50,000 OR MORE A YEAR

When Lucas was 15 months old, the Johnsons became concerned about his lack of speech. By two years, he'd learned plenty of words but was oblivious to their social context: He could recite his ABCs in German and French and list the U.S. presidents -- in order -- but could not ask for a drink. Stephanie Johnson had to quit her job and stay home with Lucas because no one else would babysit for him.

At 3, Lucas' parents found out he had autism and learned of another stark reality: There would be no insurance coverage for treatments that could easily cost at least $50,000 and that are needed to shore up the handful of free services.

The Missouri legislature is pondering a trio of bills to mandate insurance coverage for autistic children, as is the case in 15 states, including Illinois. While lawmakers deliberate, families like the Johnsons depend on fragile state and school district programs.

From 18 months until age 3, Lucas was enrolled in First Steps, a program addressing development delays that then-Gov. Matt Blunt threatened to eliminate in a 2005 round of budget cuts. There Lucas received six hours a week of speech and language, occupational, developmental and physical therapy. That's only a small portion of the 25 to 40 hours a week considered optimal.

Just getting Lucas to sit still in a chair took four years of patience and work, which, in Lucas' toddler years, cost $85 an hour without state help. The Johnsons cut back on other expenses to pay for more hours when they could, but because they were down to one income of $45,000 a year, money was tight.

"When you can't do it enough to know if it's even going to make a difference, you're just crossing your fingers and hoping," Stephanie Johnson said.

When he turned 3, Lucas qualified for just under four hours a week of official therapy plus other services built into the curriculum at his St. Charles School District preschool. When Lucas first arrived, he had no words to express himself, so he routinely acted out.

"He would cry, scream, throw stuff on floor," remembered his preschool teacher Dona Wiebler.

SEVEN YEARS OF THERAPY LATER

Now that he's 8 1/2, Lucas can still have his day ruined by things that wouldn't faze most kids: a change in bus drivers, the return to school after a snow day when there's still snow on the ground, and having to wear long sleeves. But he has no problem asking for a snack or to play Wii.

He now spends half his day in a regular third-grade classroom. For the balance of the time he receives services through the Wentzville School District -- about 23 hours a week.

Lucas' parents lament that he could be much further along had insurance covered the now-lost opportunity of more intensive early intervention.

"I think he could be 100 percent mainstreamed right now," Stephanie Johnson said.

In an ideal world, early intervention for Lucas and others like him would be an almost 24/7 situation, according to Marty Johnson: "At what point is it enough? There is no 'enough'. You can't get enough therapy for them."

LEGISLATORS MEET A SUCCESS STORY\

The parents of 10-year-old Seamus Dolnick, diagnosed with autism at 2, send him to the $23,000 a year Miriam School for children with special needs. After scholarship money, Colleen Dolnick figures they actually pay a little more than half the tuition themselves.

On top of that, the Dolnicks spend thousands more each year on summer camps.

But that amount pales in comparison to their expenses when Seamus was younger and receiving just a few free hours a week from First Steps and later the Parkway School District. During Seamus' early life, they paid $50,000 annually to make sure Seamus got up to 40 hours of weekly therapy.

Last October, Seamus showed Missouri lawmakers the results of his intensive intervention when he testified about his transformation from a boy who couldn't talk and focused obsessively on toy cars to one who loves his studies and his friends at school. It was a proud moment for Dolnick, one that validated the family's sacrifices.

"We just bit the bullet and sent him where he can get every service at the same place with teachers that understand what autism is," Dolnick said. "We have thankfully been financially able to provide for him, but we've nearly gone broke doing it."

Nancy Fowler Larson is a freelance writer in St. Louis. 

Nancy is a veteran journalist whose career spans television, radio, print and online media. Her passions include the arts and social justice, and she particularly delights in the stories of people living and working in that intersection.

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