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If you don’t have a child with autism, you might not know about Applied Behavioral Analysis. ABA is widely regarded as a necessary and effective treatment.

Now many poor children will lose access to this therapy under deals reached in Sacramento last week. Meanwhile, other kids — including those who become insured under the state’s new Obamacare marketplace — may well continue to have access to this therapy.

Here’s the background: under the Affordable Care Act, states can expand Medicaid, called Medi-Cal in California. People with incomes up to 138 percent of poverty will be eligible. Last week, as the legislature and the administration were wrapping up the state’s budget, the legislature was simultaneously moving forward on final bills to implement the Medi-Cal expansion.

Last Friday, after months of debate, legislators sent two final bills to the governor’s desk to approve the expansion. But for supporters of the expansion, this victory came at the cost — ABA therapy for kids on Medi-Cal was axed. Children’s advocates are frustrated.

“With ABA services not covered in Medi-Cal, it essentially means that low-income children are not provided the same comprehensive level of mental health benefits that we’ve mandated private plans cover,” said Mike Odeh, senior health policy associate at Children Now, an advocacy group based in Oakland.

Private insurers are currently required to cover ABA therapy under a law signed in 2011. But that law is scheduled to sunset in 2014. In an odd turn of fate, as legislators nixed ABA coverage for Medi-Cal last week they simultaneously moved a bill forward that would extend the mandate for private plans to continue to cover ABA therapy.

In short, if your children are on Medi-Cal, they will lose access to ABA while children receiving private insurance will apparently retain it — until 2019, if the proposed bill passes.

Families who had been receiving insurance through Healthy Families, California’s low-cost insurance specifically for children and pregnant women, have been fighting hard to keep access to ABA. Last fall, the state passed an emergency measure to provide ABA to children enrolled in the insurance program. When the state began moving Healthy Families children to Medi-Cal earlier this year, families were promised that benefits would be the same. Yet, some 500 children have lost or will soon lose their ABA benefits.

The emergency legislation “specifically documented that these children would likely face irreparable harm if they did not receive this treatment,” said Kristin Jacobson, President and Co-Founder of Autism Deserves Equal Coverage.

Families and advocates have been pushing the state to continue to cover this intensive therapy, which they say is necessary for many autistic children to build important developmental and social skills.

Without ABA “not only are you condemning [children] to a life where they are unable to function in society, you’re also burdening society with their care for their lifetime,” said Jacobson. She said the legislators’ move to take ABA coverage out of last week’s bills was “completely perplexing” and “inexplicable.”

Parents like Rachel Harris feel betrayed. Harris was told that her son’s treatments would continue despite the switch from Healthy Families to Medi-Cal. Harris’s 4-year-old son, Daniel, had just started receiving ABA for autism that he was diagnosed with at age 3.

In the short time Daniel had been receiving the therapy, he was already making big gains: making eye contact with people, asking questions, and he ran off less.

But when Daniel was moved to Medi-Cal on April 1, his ABA treatments ended. Harris said Daniel has begun to go backwards, biting his brother, climbing on top of the refrigerator and running off into a parking lot.

“I am trying to tend to my son and help him cope day to day,” Harris said in a press release. “It is nearly impossible without the ABA therapy on which we depended. We are devastated that the State has broken its promises to our son and our family.”

Half of the children enrolled in Healthy Families have already been switched over to Medi-Cal with the rest moving over in the coming months. With larger numbers of families expected to sign up for Medi-Cal later this year, more children with autism will not be able to access the care that they need.

Advocates are hoping to work with the legislature to get the therapy covered.

“There’s some urgency to it,” said Mike Odeh. “Some children that have already transitioned to Medi-Cal have lost those services but there’s still more transitions to come.”

At the state capital, Sen. Darrell Steinberg, (D-Sacramento), who has been pushing for autism coverage in both private insurance and Medi-Cal, said he will keep trying.

“Unfortunately, this year, there simply wasn’t enough room in the budget to fund ABA therapy in Medi-Cal for kids with autism spectrum disorder. I will not give up the fight, however,” Steinberg told California Healthline. “It’s at the top of my list to get done next year.”

New emergency rules won’t let insurers illegally limit therapy visits.(shannonrosa/flickr)

California regulators have issued emergency regulations aimed at keeping insurance companies from delaying or denying coverage for autism treatment.

Insurance Commissioner Dave Jones announced the approval of emergency rules this week, which take effect immediately.

“Autistic children and their families should now, without delay, receive the transformative treatment that will enable them to succeed in school, their families, and communities,” Jones wrote in a statement.

Insurers have already been required to comply with medically necessary treatment by the state’s Mental Health Parity Law and SB 946, which reinforced the mandate for private insurers to provide behavioral treatment for autism.

However Karen Fessel, executive director of the Northern California-based Autism Health Insurance Project, says these emergency regulations were needed.

“This is an example how even with the right laws in place you still need vigilant regulators who will help interpret the law in ways that they were intended,” says Fessel “Because the health plans often twist things around so much people don’t get the care they need even with the laws.”

Fessel says even with the laws her organization heard from many people getting frivolous denials.

“They were denied by insurers saying your child is too low functioning to benefit from the therapy,” says Fessel. “And if they were high functioning they’d say ‘your child doesn’t need the treatment,’” even though the child was having behavioral issues in the community.

One specific change is banning visit limits or cost limits on coverage unless limits apply equally to all benefits under the policy. Fessel says until now the limits were way too low.

“On average a lot of these policies were limited to 30 sessions a year for speech and occupational therapy,” Fessel says. “Whereas what is needed is 2 a week of speech and one a week of occupational therapy.”

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It was news that startled many. A new study from the Centers for Diseases Control and Prevention suggests that the prevalence of the disorder is much higher than previously thought. Up to 1 in 88 children is expected to develop autism or a related disorder, which is a 23 percent jump from the rate the CDC found just 2 years ago. Perhaps one million children and teens across the country are affected.

This morning on KQED’s Forum, autism experts discussed the significance of the new numbers and what progress is being made in the field of autism research.

The first question on everybody’s mind was whether the new number represents a true rise in the rate of autism – or is simply a reflection of the fact that more doctors are recognizing it.

“We’re not sure what the increase is due to. We do know that better identification, better diagnosis, and availability of services is contributing,” said Coleen Boyle, Director of the National Center on Birth Defects and Developmental Disabilities at the CDC.

Sanford Newmark, head of the Pediatric Integrative Neurodevelopmental Program at UCSF, says that doctors are also at a loss to explain the increased rate of autism.

“I don’t think we know,” he said. “It’s certainly partly better diagnosis, but it’s possible that there are more kids out there who have autism.”

One factor that may have led to the rise in autism diagnosis is that doctors are now more attuned to the early signs of autism. Newmark says that kids who are developing normally will begin to babble by eight months of age, but that kids with autism don’t. Another difference is that most kids will try to get their parents’ attention by pointing to something, but that kids with autism don’t have the same impulse to be social.

That is something that Shannon Des Roches Rosa, an author and blogger, said that she saw in her autistic son when he was an infant. She described him at 18 months as having what she called a lack of “joint attention” – he was not interested in looking at the same things all the grown-ups were. “He was not responding to his name, and he was not responding to a lot of social cues,” she said.

Newmark added that when the parents smile or laugh, a young child should smile in response. “A warning sign is if the child just doesn’t pay any attention to that,” he said.

If parents suspect their child is showing early signs of autism, Newmark says they should seek support. “That is, to me, the most important part of what could come out of this [CDC study] — is early screening.”

Both he and Des Roches Rosa think that parents should find a pediatrician they are comfortable with, one who they trust. If parents and their doctor find signs that a child may have autism, the next step is to get a formal evaluation at a state-run center. From there, children with autism or developmental delay can get access to speech, occupational, physical and most important, behavioral therapy.

Newmark says that researchers are continuing to look for treatment options beyond therapy that may help kids with autism, but that’s not easy.

“We certainly don’t know the cause of autism, and that does make it more difficult to find a really great treatment,” he said.

Both he and Des Roches Rosa caution that parents should not try new treatments just because they feel they must do something. They recommend that parents should critically evaluate any treatment options they come across and be sure that they are safe and worth the risk.

Eric and Cindy Everson on vacation with their sons. (Photo: Everson Family)

The emotions of new parents can run the gamut. They’re in uncharted water. Even people who have spent a great deal of time around children will likely tell you that having their own is a new experience. For Eric and Cindy Everson, it was no different. They had been around children, but when they had their son, Shane, the world changed. “We were new parents,” Eric says, “we didn’t know what to expect.”

Still, they did recognize when Shane started missing milestones. He was late to crawl. Then he was late walking and they had him evaluated. When Shane started walking shortly after the evaluation, Eric and Cindy hoped all was well. But they were seeing other issues as well. Shane was not not babbling or making any noises, a key marker for learning language. He was not responding when his parents called his name. Finally the formal diagnosis came. Shane had autism, a neurodevelopment disorder. The communication problems their son had, repetitive behavior they had seen, problems with social interaction, these are all hallmarks of autism.

“We were devastated to think that our child was developmentally disabled, there was no cure. What’s his future going to look like? Will he talk? Will he walk? Will he do anything that typical kids do? … You start living first in denial, then you have to move forward and you have to research the best types of services and therapies and it’s overwhelming.”

When Shane was 3, his brother, Joe, was born. By the time Joe was 20 months, he, too, was diagnosed with autism. Recent research shows that having a child with autism increases the next child’s risk by almost 20 percent. At the time Joe was born, the estimates had been three to ten percent. There is no prenatal test to detect autism.

From the time their older son was diagnosed, Eric and Cindy entered a world of intense advocacy and managing all types of therapy for both their sons. “We’ve had a lot of people and tutors and different people going in and out of the house,” Eric explained. “We’ve had them in speech therapy, occupational therapy, different types of therapies and training. Cindy was kind of like the program manager.”

Joe has moderate autism and, Cindy says, is definitely “more exhausting.” When he was younger, he would run off down the street. One time he got out of the house in the early morning hours. A neighbor called to alert them at 5am. The Eversons put key locks on all the doors after that. Shane has mild autism, and as a young boy had problems with speech and sensory issues. Like many children with autism, he was obsessed with routine. He would want his parents to take specific routes when coming home in the car. If not, he would start screaming.

Erica Frieze is a clinical psychologist at the UC Davis MIND Institute. She says the obsession with routine is very common in children with autism. “Kids with autism like sameness,” she said, “and they like to follow rules. So when those rules are changed, it’s difficult for them.” When kids act out, she says, parents have to maintain consistency.

Resources Available

In California, parents are eligible for services for their children at one of 21 regional centers run by the state’s Department of Developmental Services. Autistic children typically need everything from speech therapy to occupation therapy, help with behavior, early education and the list goes on. Children receive services at these centers until they are 3-years-old. At that point, the child transitions to the local school district and its special education programs. Eric and Cindy say they were fortunate to be able to supplement state programs with therapists they hired privately. In addition, they have a strong support network of family and friends.

Shannon Rosa also credits a strong network of family and friends in supporting her and her husband as they raise their autistic son Leo, 11. But when Leo was diagnosed at age 2, they initially felt alone. They didn’t know anyone with an autistic child. At that time, there was no central place to go for comprehensive information, Rosa says.

No Pity

That glimpse of the future is especially close to Rosa’s heart. She criticizes the media for conditioning people “to fear autism as the worst possible thing that can happen to us.” Instead, she encourages parents of autistic children to work on understanding them, and helping them to develop as fully as possible. “I see my son as a happy child who needs support in a lot of day to day activities. He needs one to one supervision, but, within that, I want people to try to accept him on his own terms,” she says. ”Pity is of no use for us. What does pity do for us? Nothing. … Pity closes off opportunities. Patronizing closes off opportunities. As parents, it’s a responsibility to have our child be the best they can be.”

And helping children be the best they can be involves fighting for services, she says. “I know people who have gone to the mat with the regional centers and have had to be savvy, fearless and tenacious to get that funding.” Rosa described learning to advocate for one’s child as “another education” parents need to embark on. Early intervention is critical, she says.

Back at the Everson home, Shane is now 15. His brother Joe is 12. Those early years of therapy have helped both boys tremendously, their parents say. Shane, who didn’t talk at all until he was 4, now won’t stop talking. He has a cell phone and attends some mainstream classes at his school. Joe has more significant language difficulties. His parents think it is unlikely he will ever be able to live on his own. “It’s interesting raising two autistic kids with such different needs,” Cindy Everson says. “All children have potential to reach; as parents we help them reach their potential. We’re doing that with our kids. We have two kids with autism that are affected differently and we try to do our best every day to help them reach their potential.”

From those first weeks of devastation and denial after Shane’s diagnosis, Eric and Cindy, have formed a rich family life. “We had to really come to that point of acceptance to let us really be able to accept the fact that our family is a different family, but that’s OK. Our kids have brought us so much joy,” Cindy says. “I feel like my character is stronger because of all the things they’ve taught me. You see progress and it becomes what you do. We have an awesome time with our kids.”

Learn More: The California Report special half-hour on many aspects of parenting.