By Ryder Diaz, KQED
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."