The autism community got good news this week when the Assembly Committee on Health unanimously passed a bill extending what advocates described as critical behavioral health therapy for people with autism.
SB 126 by Sen. Darrell Steinberg (D-Sacramento) would require California insurers to include applied behavior analysis — known as ABA therapy — as an essential benefit under the Affordable Care Act next year.
“This bill is a huge step in the right direction in giving families a ray of hope that brings light at the end of the tunnel,” Steinberg said.
There hasn’t been a lot of light for autism advocates this week. The budget deal eliminated a $50 million general fund provision in the trailer bill that would have ensured ABA therapy coverage for Medi-Cal children. Some in the autism community worry that the budget deal also might exclude ABA therapy from the state’s list of 2014 ACA essential health benefits.
Tuesday’s committee approval of SB 126 would affect an estimated 12,700 privately insured people diagnosed with autism who use these services today, according to Steinberg’s office. The proposed law would extend the provisions of a 2012 Steinberg bill, SB 946, which was due to sunset in July 2014. SB 126 extends that law to 2019.
The original bill, SB 946, also applied to children in the state’s Healthy Families program. But with the elimination of that program this year, many families lost coverage in the shift to Medi-Cal managed care plans, despite assurances from state health officials there would be no gaps in coverage.
“There have been concerns about what happens to the services that were provided under Healthy Families when people are transitioning to Medi-Cal,” said Assembly member Richard Pan (D-Sacramento), chair of Assembly Health. “The [Brown] Administration indicated that they would still be covered, however many families have experienced problems with continuity of care because [SB 946] didnât cover Medi-Cal. So when they transitioned, those services were discontinued.”
Pan said he and other lawmakers have been pushing the Department of Health Care Services, which is overseeing the transition, to follow through on a previous commitment to continue providing ABA therapy and related autism care.
“That’s what was supposed to happen, and it has not happened yet,” Pan said. “We want the department to follow through on the commitments that they made to ensure that patients receive care when they make the transition from Healthy Families to Medi-Cal.”
Pan  said SB 126 is critical for people with autism.
“One of the challenges has been in autism care there’s been a bit of tug of war about who should cover treatment. Should it be health insurance companies, or the education system?” Pan said. “What SB 126 does is ensure that children with autism are going to be able to get the care that they need, including behavioral therapy, which I think at times was not always covered.”
Melissa Cortez-Roth, legislative advocate for Autism Speaks, called the original bill and the five-year extension “landmark legislation.”
“I’m happy to say that the state will not be on the hook for any additional costs [with SB 126],” Cortez-Roth said, “and that ABA is included as an essential health benefit in the exchange.”
The setbacks experienced this week by the autism community mean there’s an uncertain future for Medi-Cal children with autism, said Kristin Jacobson, president of Autism Deserves Equal Coverage.
“We are certainly not giving up,” Jacobson said. “This medically necessary treatment should be covered. When there is an interruption in services, it is very difficult for the children, and often conditions worsen, and that can cause harm.”Â
Steinberg said in April that this week’s legislation is “not nearly enough.”
“This year we intend to make sure all kids, regardless of whether they’re on public or private insurance, get the benefit of behavioral therapy,” Steinberg said then. “We must seek to include behavioral treatment for autism in Medi-Cal managed health care.”
An estimated 500 children were getting ABA therapy in Healthy Families, and DHCS does not have a plan to continue coverage for all of those children under Medi-Cal managed care, said Karen Fessel, executive director of the Autism Health Insurance Project. Those children can apply for ABA therapy at the regional centers, but with more stringent eligibility standards there, about 70% of those kids’ families will simply be denied care, she said.
“If those kids aren’t covered through regional centers,” Fessel said, “that’s going to be a huge problem.”