State lawmakers this month delivered a blow to families with children suffering from autism by cutting from the budget a $50-million fund for a therapy that can be life changing for those with the disorder.
The money was cut from the proposed 2013-14 budget package in recent weeks during conference committee negotiations between the Senate and Assembly in Sacramento.
Earlier the Senate Budget Committee had included the money for the state Medi-Cal program to cover applied behavior analysis or ABA, which helps children suffering from autism develop social, mobile and verbal skills. The therapy can cost $40,000 per year but is crucial in a child’s early years, say autism authorities.
A substantial but unknown number of families statewide reportedly lost access to ABA service as they were being switched from the state’s Healthy Families program to Medi-Cal.
Children in Healthy Families — state subsidized private insurance for nearly a million youths statewide — are being transferred to Medi-Cal as the state prepares for the new federal system for health care in 2014.
“We are devastated that the state has broken its promises to our son and family to provide a smooth transition with no interruption in therapies,” said Rachel Harris, the Huntington Beach mother of a 4-year-old child with autism. “We really have nowhere left to turn.”
A coalition of autism groups expressed in a news release “deep disappointment” because state officials know children with autism spectrum disorder will be harmed by delays or interruptions in access to ABA therapy.
In August 2012, the state cited “imminent, serious and irreparable harm” if ABA services weren’t provided to Healthy Families-covered children, noted Kristin Jacobsen, a Burlingame-based advocate for families in Orange County and elsewhere.
But less than a year later, Jacobson, president and co-founder of Autism Deserves Equal Coverage, asked: “How can the [Brown] Administration allow these children and others in Medi-Cal to be exposed to irreparable harm?”
A Medi-Cal spokesman said families can try to receive coverage for ABA therapy through the Regional Center of Orange County in Santa Ana, one of the statewide system of facilities for developmental disabilities that can fund such services for Medi-Cal children.
But Jacobsen noted that families like the Harrises have so far been unable to qualify for the regional center, so they are without ABA therapy.
With the ABA funds on the legislative chopping block, Jacobsen said, there were unsuccessful attempts to broker deals by two state legislators — Sens. Bill Emmerson, R-Redlands, and Mark DeSaulnier, D-Walnut Creek.
During earlier Senate deliberations, Allan Mansoor, R-Costa Mesa, expressed concern about the loss of services as the state reorganized for the Patient Protection and Affordable Care Act.
In the end, his staff said, he didn’t mount a service-saving drive. He and all legislative Republicans voted against Senate Bill 77, the final budget bill.
Correction: A previous version of this story incorrectly stated which state senators tried to save the applied behavioral analysis funding.
Rex Dalton is a San Diego-based journalist who has worked for the San Diego Union-Tribune and the journal Nature. You can reach him directly at rexdalton@aol.com.