This article first appeared in the St. Louis Beacon, Jan. 15, 2010 - Until age 4, Charles Quigless, an angelic-looking child with a wide, gapped-tooth smile, had only his hands, feet and a variety of noises with which to communicate. When Charles was diagnosed with autism at age 3, his parents hit the ground running, knowing they had only a small window of time in which he could learn language.
To bolster the five to 10 hours a week of services offered by the St. Louis school system, Angela Quigless and her husband, both professionals, spent as much as $1,200 a month out-of-pocket for additional therapies. But their son's schedule still fell short of the 25 to 40 hours needed for successful early intervention.
Now 8, Charles speaks so well that he can sometimes blend in with other children when he's in a familiar situation. But language and sensory issues persist, and the Quiglesses wonder how different their lives would be if they'd had insurance coverage for all the hours of therapy Charles needed early on.
"We still can't sit in the vestibule in church because of the different pitches and sounds that bother him. He will scream unmercifully and stomp and cover his ears," Angela Quigless said.
The Missouri Legislature is struggling this session to address the needs of families like the Quiglesses even in the face of a $13 billion budget shortfall. Opponents of bills that would provide insurance coverage for children's autism therapies bristle at a new mandate and the costs it would entail. But almost no one argues another point: Missouri children who have autism need early, intense intervention -- and families need help paying for it.
Autism is a disorder that affects brain development regarding communication and social skills. The continuum from mild to severe is often referred to as autism spectrum disorders. Four to five times as many boys as girls have autism spectrum disorders.
Fifteen states, including Illinois, require insurance coverage for autism treatments. New figures from the Centers for Disease Control indicate that Missouri and Arizona share the distinction of having more autistic children per capita than any other state: 1.2 out of every 100. Treatments can cost more than $50,000 a year.
"Most families don't even have $50 to pay for one session of speech therapy a week. Only the wealthy can provide treatment without insurance coverage," said Colleen Dolnick, a Chesterfield parent of a 10-year-old boy with autism.
And yet treatment -- the earlier the better -- is critical. Once a child is diagnosed with autism, parents begin a race against time to prevent inappropriate behaviors before they start and redirect the ones already in place.
"Studies show kids who have early, intensive intervention have much, much better outcomes than was even previously known," said Dr. Joan Luby, Washington University professor of child psychiatry.
BILLS WOULD COVER UP TO $72,000 A YEAR
The state Senate passed an insurance-coverage-for-autism bill in the 2009 session by a margin of 29 to 2. A similar measure died in the House. Currently two House bills and one Senate measure are under consideration:
- SB 618 and HB 1311: Coverage for under 21 years, $72,000 cap, opt-out clause for small businesses, effective August 2010
- HB 1341: 18 and younger, some coverage restricted to 15 and under, $55,000 limit, effective January 2011
The concept has bipartisan support. In July, Democratic Gov. Jay Nixon officially endorsed passage of a bill covering autism therapies. Rep. Jason Grill, D-Kansas City, introduced one of the House proposals; Republicans sponsored the other House measure and the Senate bill.
Grill tried to make his HB 1341 less ambitious than the other House measure, and therefore more palatable to legislators. He's hopeful that a compromise will emerge from committee.
"We just want to get a bill passed this session," Grill said.
COST PROJECTIONS VARY
Insurance companies are lobbying hard against any autism-coverage measure. A new mandate is unacceptable and the projected increase in premiums is too high, says Brent Butler of the Missouri Insurance Coalition.
"It could add as much as 3 percent to the cost of health coverage," Butler said. "We oppose any mandate. You keep getting away from the basics of what you expect from health costs, like covering your broken arm when you fall down."
Rep. Sally Faith, R-St. Charles, did not support last year's House bill because of cost and the burden on small businesses. Still, she understands the need to help families with children with autism.
"I get it, but what's the best way to get this coverage? We need to look at the practicality," Faith said.
Everyone agrees coverage will increase premiums. The question is how much. According to the Council for Affordable Health Insurance, a national nonprofit group of insurance providers and small businesses, the increase would be more along the lines of 1 percent.
That newer figure helped persuade former skeptic, Speaker of the House Ron Richard, R-Joplin, and other legislators that a bill could pass the House this session. Richard is now more confident about the issue's fate than he was in 2009.
"He didn't want to bring a bill that would fail," said Richard's spokesperson Kristen Blanchard.
When the idea of coverage for autism treatment was first floated, insurance lobbyists questioned the effectiveness of such therapies, said Sen. Scott Rupp, R-Wentzville, the sponsor of SB 618. Those arguments were quickly shot down, he said.
"They're no longer even talking about those types of things. Now it's just about cost and mandate," Rupp said.
The issue hits home for Rep. Dwight Scharnhorst, R-Manchester, who sponsors HB 1311. Less than three years ago, his 6-year-old severely autistic grandson Bryce died of causes related to his epilepsy, a condition present in as many as 40 percent of children with autism.
With images of his grandson's struggles seared into his brain, Scharnhorst reminds those who resist a mandate that people now take for granted required coverage for other disorders and diseases.
"We constantly pass mandates at the state level. At one time diabetes coverage had to be mandated," Scharnhorst said.
Bill sponsors expect their measures to come up for a vote before the end of January.
'PAY NOW OR PAY LATER'
Without coverage, parents of autistic children do the best they can.
"You write a $120 check one week and a $300 check one month -- I never keep track of it because I'm going to do what I need to do for my child, regardless," Quigless said.
The money spent on Charles' therapy barely provides the basics, Quigless said. More therapies, beginning as early as 18 months, are key, said Dona Wiebler, a behavior analyst who works with autistic children.
"It comes down to pay now or pay later," Wiebler said. "If the child doesn't learn the skills to become independent and self-sufficient now, who's going to support them down the road?"
Nancy Fowler Larson is a freelance writer in St. Louis.
