Hope for autism help: Georgia lawmaker, supporters hope 7th time will be the charm for bill

Hope for autism help: Georgia lawmaker, supporters hope 7th time will be the charm for bill

February 16th, 2015 by Kate Belz and Tyler Jett in Local Regional News

Georgia resident Tricia Harris, 38, joins her son Caleb, 2, at the Siskin Children's Institute before heading home for the day.

Photo by Tim Barber /Times Free Press.

A drop of water slips from the spout of a sink, falls through inches of air and crashes onto a toddler's palm.

Then, the course of a day changes.

Caleb Flanagan, 2 1/2, of LaFayette, Ga., cries and screams. He stretches his arm away from him, offering his hand to his mother, Tricia Harris. The discomfort is unbearable. He would rather have no hand at all than one with a dot of water.

FAST FACT

One out of every 88 children in the United States has autism spectrum disorder, according to the U.S. Centers for Disease Control and Prevention.
TREATING AUTISM
Treatment plans should be tailored to every child. Some early intervention therapies:
Applied Behavioral Analysis: Spend several hours a day with a child, encouraging the child to behave by giving him or her a reward, such as a sticker.
Early Start Denver Model: Combine several practices to train a child to elicit eye contact, talk and communicate in other forms.
Floor time: Sit on the floor with a child and play whatever games he or she wants to play. Does not target speech, motor or cognitive skills, instead focusing on emotional skills.
Pivotal Response Therapy: While playing with a child, the therapist targets important areas of development, like motivation, self management and responding to multiple cues.
Verbal Behavior Therapy: Teach children language by showing them how to connect words with their purposes. For example, show them a picture of a cookie and teach them how to ask for the snack.
Source: Autism Speaks

POSSIBLE SIGNS OF AUTISM
Social issues, like failing to make eye contact, failing to make facial recognition and failing to display empathy.
Verbal problems, such as learning how to speak later than most children.
Limited interest in playing, such as focusing on a piece of a toy rather than the whole toy, being preoccupied with a single topic and demanding a routine.
Source: WebMD

This scene plays out several times a week with several different triggers for Caleb. Too much bass in a song, the texture of oatmeal, the feeling of paint -- all pebbles in the path to an afternoon filled with emotional fits.

Caleb, whom a doctor diagnosed with autism on Dec. 30, doesn't know how to handle his discomfort or even socialize in general. He communicates like a 6-month-old. But Tricia Harris hopes her son will improve, will one day sit in mainstream classrooms instead of special education courses.

To get to that point, he needs therapy. Specifically, Harris said, he needs Applied Behavioral Analysis, an intensive treatment that helps children learn social behaviors that most parents take for granted. A therapist would spend about 40 hours a week with him, identifying his triggers and helping him learn to cope with them.

But Harris can't afford such help. She estimates ABA would cost $75,000 a year, all out of pocket because her private insurance company doesn't cover autism treatments.

Harris, who used to work for Bernice King, the daughter of the nation's most famous civil rights leader, says denying insurance coverage for the disorder is "blatant discrimination." Like her, many other parents of children with autism in Georgia have asked the Legislature for help.

For the seventh consecutive year, a Republican Georgia state lawmaker has proposed a bill that would require private insurance companies to cover autism treatments. In each of the last six years, the bill has failed. But activists are optimistic.

"We live in a nation where we have to legislate and mandate humanity," Harris said.

Meanwhile, a Democratic Tennessee lawmaker introduced a similar bill Thursday. While the actual language of that bill, sponsored by Sen. Sara Kyle, D-Memphis, has not been drawn up, it aims to require Tennessee insurance companies to expand their now-limited coverage for autism screenings and treatment.

The Georgia bill, sponsored by Sen. Charlie Bethel, R-Dalton, would demand that insurance companies cover physicians' and psychologists' assessments of whether a child has autism. If the child does have the disorder, the bill demands insurance companies offer at least some coverage for treatments, like ABA.

Under this bill, House Bill 1, the insurance company would only have to cover ABA up to $35,000 a year. While Harris' estimate for her son's treatment is much higher than that, other parents say their children could receive ABA coverage for less than $30,000. Different children have different needs.

Bethel's bill also comes with a couple of caps. The coverage only extends to children 6 years old and younger. Also, companies would not have to provide coverage at all if they can prove the mandate boosts all of their customers' premiums by more than 1 percent.

The Senate unanimously passed the bill Jan. 29. The House Insurance Committee will debate the bill's merits on Wednesday.

Pro-business groups like the Georgia Chamber of Commerce have spoken out against the bill. So have insurance companies, who say the mandate will make all health insurance too expensive.

Graham Thompson, the executive director of the Georgia Association of Health Plans, is skeptical of activists' claims that the insurance mandate will only boost premiums by about 30 cents per person, per month. The activists cite figures from some of the other 38 states that mandate insurance coverage for autism treatments, but Thompson said these costs fluctuate depending on the location.

Tricia Harris joins her son, Caleb, at the Siskin Children's Institute.

Tricia Harris joins her son, Caleb, at the...

Photo by Tim Barber /Times Free Press.

He also pointed out that Georgia's insurance companies already cover the costs of speech therapy, physical therapy and occupational therapy to children with autism. Fundamentally, he opposes the restrictions that mandates put on insurance companies.

If anything, Thompson wants to wait at least another year before passing a bill like Bethel's. Last year, Gov. Nathan Deal passed a budget for the first time that provided ABA coverage for state employees whose children have autism.

Thompson wants to wait and evaluate the premiums for those 600,000 Georgians.

"We'll know next year," he said. "If covering ABA therapy doesn't cost as much as we say it does, there will certainly be a brand new debate."

But Bethel said this can't wait. Early development is key for children with autism, and preventing them from receiving ABA can have long-term effects. Some never even learn how to speak.

In Tennessee, insurers are required to cover limited speech, physical and occupational therapy for children with autism up to age 12 whose parents are on "fully-funded" insurance plans, which are regulated by the state. The law does not apply to many families whose employers offer "self-funded" insurance plans, regulated by the federal government.

But advocates say the law needs to be expanded to include more robust behavioral treatments -- including ABA -- for children across the autism spectrum.

"[ABA] can be the difference between having a job and not being employable," said Jennifer Sheridan, advocacy chairwoman for Autism Speaks Tennessee. "This is the kind of therapy that can turn these citizens into taxpayers, which is something you think the lawmakers would support."

Tennessee autism advocates tried to pass a bill similar to Georgia's last year. They were optimistic that the bill, sponsored by Sen. Jim Tracy, R-Shelbyville, and Rep. Kevin Brooks, R-Cleveland, would win easy passage.

But Tracy abruptly pulled the bill hours before it got to a committee, saying that there was disagreement among the autism community about the law -- a claim advocates say is baffling.

"It would have meant the world to many of our families," said Dave Buck, director of the Chattanooga Autism Center. "The needs of our families are so different and vast. Some may need speech therapy. But others need therapy for anxiety. Or severe tantrums. Or any number of other issues."

POLL: Should insurance companies provide autism coverage?

Sheridan said the political climate in the Tennessee General Assembly, especially after the failure of Insure Tennessee, prompted the organization to back off from lobbying for a bill this year. But after Kyle introduced her bill Thursday, Autism Speaks leaders say they want to learn more.

"Thirty-seven other states have passed this," said Sheridan. "I can't imagine Tennessee turning its back on these families much longer."

Kyle could not be reached for comment Friday.

While coverage options vary by state, federal changes have opened the door to more expansive autism services for those on Medicaid or Obamacare plans.

Last summer, the federal government announced that comprehensive autism services must be covered for children -- including ABA in most cases -- under all state Medicaid and Children's Health Insurance Program plans.

All plans sold on HealthCare.gov must include "habilitative care" -- therapies that help people learn functional skills. But each state is allowed to identify its own "benchmark plan" for benefits, meaning that service levels vary.

In Lyons, Ga., Anna Bullard has been advocating for autism coverage since 2007, when her daughter, Ava, was diagnosed. Bethel's bill is named after her, though it would not directly affect Ava, who is now 10.

Bullard managed to pay about $30,000 for the first year of Ava's ABA treatment. She said the price declined each year as the child improved. A therapist worked with her for 30-40 hours a week.

When Ava reached second grade, Bullard said, she no longer needed therapy.

She and Bethel both believe the bill will pass this year. They say the failings from the last six years, if nothing else, raised awareness.

"For a long time," she said, "it just kind of felt like kids with autism were really pushed out of Georgia. I think we've taken a turn for the positive. ... This is the best year we've ever had. Everyone, we feel like, is educated."

Contact staff writer Tyler Jett at tjett@timesfreepress.com or at 423-757-6476. Contact staff writer Kate Belz at kbelz@timesfreepress.com or at 423-757-6673.


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