Parents urge governor to sign measure mandating coverage for autism treatment
By Timm Herdt
Ventura County Star
Posted September 20, 2011 at 4:32 p.m.
© 2011 Ventura County Star. All rights reserved. This material may not be published, broadcast, rewritten or redistributed. 
SACRAMENTO — To Jennifer McNulty of Thousand Oaks, there is no question that the intensive behavioral therapy her son, Kyle, received beginning at age 5 was as medically essential as surgery would have been had it been his heart, rather than his brain, that was malfunctioning.
He was diagnosed with autism spectrum disorder and "was very, very severe, she said. He was violent, was self-abusive and had barely any language."
The treatment protocol was clear: Kyle could benefit from applied behavioral analysis, which consists of intensive therapy of up to 25 hours a week aimed at improving behavior and increasing cognitive function, language and social skills.
After learning her PPO insurance plan would not pay for the treatment, McNulty did what a parent who has the means does: took out a home-equity loan and paid for Kyle's therapy herself.
"Yes, it was expensive, but it's changed our lives," she said.
Kyle McNulty is now 14.
"I can travel anywhere with him, can take him in any restaurant," Jennifer McNulty said. "He's on the swim team. It helped him with everything."
"This type of early intervention is critical," she said. "It really is changing children's lives."
SB946, by Senate President Pro Tem Darrell Steinberg, D-Sacramento, is a health insurance mandate bill the insurance industry and other critics say would drive up expenses and contribute to rising premiums.
An analysis by the California Health Benefits Review Program, a team of University of California experts charged with assessing the effects of proposed new mandates, concluded this year that if the bill became law, 7,300 additional insured children would access behavioral therapy coverage each year at a cost of $50,000 each.
Those increased costs would result in a 0.24 percent premium increase for group coverage and a 0.14 percent increase for individual plans, the analysis states.
Nicole Evans, spokeswoman for the California Association of Health Plans, said the measure could add as much as $700 million a year to the costs of health insurance.
"Health plans already provide comprehensive medical coverage for autism services," she said. "We cover the medical side of the treatment, not the life-skills or educational services."
Advocates for the bill say the new mandate should not be necessary because the treatment already should be covered under the state's mental health parity law, which requires insurers to cover mental illnesses at the same level they cover physical maladies.
The UC analysis found nearly 20 percent of insured patients already receive coverage for the treatment, but Jennifer McNulty said the parents with whom she has worked in Ventura County have universally faced rejection from their insurers, who say the therapy is educational rather than medical.
Dr. Steven Graff, director of clinical services for the Tri-Counties Regional Center, said there is no question of the medical benefit of applied behavioral analysis in treating autistic children.
"It's considered the primary factor in the established treatment that produces beneficial effect," he said. "I've seen some children make amazing gains. They don't all make amazing gains, but there are very few who don't make at least some gains."
Graff said the repetition involved in the intense therapy strengthens and reinforces nerve pathways in the brain.
"You're actually making a functional change in the human brain," Graff said. "This becomes in great sense a medical intervention."
The state's regional centers for mental health services provide the treatment free, but because of budget cutbacks in recent years only those children on the most severe end of the autism spectrum are eligible for coverage, Graff said. The regional centers also pay therapists substantially less than do private insurers.
If the bill becomes law, Graff said, the therapy will become available to a wider range of autistic children and their parents will have a much broader choice of therapists.
Access to autism treatment is becoming a growing concern nationwide. The national Centers for Disease Control and Prevention reported the number of children with autism grew by 57 percent from 2002 to 2006, an increase only partly explained by greater public awareness that has led to more diagnoses. The CDC reports 1 in 110 children have autism spectrum disorder.
Twenty-eight states mandate coverage of the behavioral therapy for autistic children, which is expected to be classified as an essential health benefit that would have to be covered under the federal Affordable Care Act, which will take effect in 2014. The federal law says coverage must include "mental health and substance abuse disorder services, including behavioral health treatment."
"Families can't wait a couple years," said Kristin Jacobson of the Alliance of California Autism Organizations, who is helping to organize a rally in support of SB946, planned for Monday at the state Capitol.
Brown has until Oct. 9 to act on the bill.
He was diagnosed with autism spectrum disorder and "was very, very severe, she said. He was violent, was self-abusive and had barely any language."
The treatment protocol was clear: Kyle could benefit from applied behavioral analysis, which consists of intensive therapy of up to 25 hours a week aimed at improving behavior and increasing cognitive function, language and social skills.
After learning her PPO insurance plan would not pay for the treatment, McNulty did what a parent who has the means does: took out a home-equity loan and paid for Kyle's therapy herself.
"Yes, it was expensive, but it's changed our lives," she said.
Kyle McNulty is now 14.
"I can travel anywhere with him, can take him in any restaurant," Jennifer McNulty said. "He's on the swim team. It helped him with everything."
McNulty, the immediate past president of the Ventura County Autism Society, is joining with parents of autistic children across the state this week to deliver a message to Gov. Jerry Brown: Sign a bill now on your desk, Senate Bill 946, that would clarify existing mental health coverage law to require insurers to cover applied behavioral analysis.
"This type of early intervention is critical," she said. "It really is changing children's lives."
SB946, by Senate President Pro Tem Darrell Steinberg, D-Sacramento, is a health insurance mandate bill the insurance industry and other critics say would drive up expenses and contribute to rising premiums.
An analysis by the California Health Benefits Review Program, a team of University of California experts charged with assessing the effects of proposed new mandates, concluded this year that if the bill became law, 7,300 additional insured children would access behavioral therapy coverage each year at a cost of $50,000 each.
Those increased costs would result in a 0.24 percent premium increase for group coverage and a 0.14 percent increase for individual plans, the analysis states.
Nicole Evans, spokeswoman for the California Association of Health Plans, said the measure could add as much as $700 million a year to the costs of health insurance.
"Health plans already provide comprehensive medical coverage for autism services," she said. "We cover the medical side of the treatment, not the life-skills or educational services."
Advocates for the bill say the new mandate should not be necessary because the treatment already should be covered under the state's mental health parity law, which requires insurers to cover mental illnesses at the same level they cover physical maladies.
The UC analysis found nearly 20 percent of insured patients already receive coverage for the treatment, but Jennifer McNulty said the parents with whom she has worked in Ventura County have universally faced rejection from their insurers, who say the therapy is educational rather than medical.
Dr. Steven Graff, director of clinical services for the Tri-Counties Regional Center, said there is no question of the medical benefit of applied behavioral analysis in treating autistic children.
"It's considered the primary factor in the established treatment that produces beneficial effect," he said. "I've seen some children make amazing gains. They don't all make amazing gains, but there are very few who don't make at least some gains."
Graff said the repetition involved in the intense therapy strengthens and reinforces nerve pathways in the brain.
"You're actually making a functional change in the human brain," Graff said. "This becomes in great sense a medical intervention."
The state's regional centers for mental health services provide the treatment free, but because of budget cutbacks in recent years only those children on the most severe end of the autism spectrum are eligible for coverage, Graff said. The regional centers also pay therapists substantially less than do private insurers.
If the bill becomes law, Graff said, the therapy will become available to a wider range of autistic children and their parents will have a much broader choice of therapists.
Access to autism treatment is becoming a growing concern nationwide. The national Centers for Disease Control and Prevention reported the number of children with autism grew by 57 percent from 2002 to 2006, an increase only partly explained by greater public awareness that has led to more diagnoses. The CDC reports 1 in 110 children have autism spectrum disorder.
Twenty-eight states mandate coverage of the behavioral therapy for autistic children, which is expected to be classified as an essential health benefit that would have to be covered under the federal Affordable Care Act, which will take effect in 2014. The federal law says coverage must include "mental health and substance abuse disorder services, including behavioral health treatment."
"Families can't wait a couple years," said Kristin Jacobson of the Alliance of California Autism Organizations, who is helping to organize a rally in support of SB946, planned for Monday at the state Capitol.
Brown has until Oct. 9 to act on the bill.
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