In 2005, a small group of advocates and parents of children on the autism spectrum began meeting with an audacious idea — to bring about a change in California law, a change that would force insurance companies to pay for treatment for autism spectrum disorders. There were 10-15 of us in our Bay Area cell, notably:
We met on late-night conference calls, in conference rooms after-hours, and sometimes on Saturdays. Some of us got busy with other things or couldn’t juggle the demands of special-needs children, full-time jobs and regular family lives, so we “went dark” for periods of time. Some of us (like Supervisor Pine and I) ran for office, hoping to influence the political system to take this cause, among others we care about, seriously. All of us knew that the current state of affairs — where privately-funded health insurance companies were allowed to call autism treatment “educational” and deny responsibility altogether (pushing the responsibility for early intervention onto already burdened state Regional Centers and school districts) could not stand. Ms. Jacobson, Ms. Almaliti and Dr. Fessel went on to found services that help families of children with autism navigate the insurance system and successfully fight for treatment (full disclosure: I have been working with Ms. Jacobson over the past year as an advocate at her firm, Autism Deserves Equal Coverage. Dr. Fessel’s is Autism Health Insurance Project).
- Dave Pine, then a member of the Burlingame Elementary School District Board and now a San Mateo County Supervisor;
- Feda Almaliti, one of the first parents to successfully sue Kaiser for failing to provide behavioral treatment for her son Mohammed;
- Kristin Jacobson, an MBA, longtime health care marketing professional, and autism treatment advocate;
- Dr. Karen Fessel, PhD, an expert in public health and mom to a teenager with Asperger’s....
Ms. Jacobson, Ms. Almaliti, and Dr. Fessel persevered, with the tireless help of Dr. Lou Vismara, MD, parent of a son with autism and a longtime legislative advisor to Senator Don Perata (former President Pro Tem of the California State Senate) and his successor, Senator Darrell Steinberg. When I first met him six years ago, Dr. Vismara was not particularly hopeful that the legislature would take on the insurance companies, but as the lead staff member in charge of the California Legislative Blue Ribbon Commission on Autism, he was willing to listen. Over time, he became our group’s most stalwart ally in the fight to convince the Legislature that an insurance mandate was the best way to help millions of California families who were really struggling to make sure their children received ABA, speech and other treatment to help them reach their fullest potential.
Finally, this August, Senator Steinberg, Dr. Vismara and the advocates decided the time was right, and introduced SB 946, a landmark bill that will finally bring justice to California families of children with autism and relief to Regional Centers, school districts, and local budgets.
Last Friday, many members of the original insurance advocacy group were reunited in Berkeley at a rally designed to encourage Governor Jerry Brown to sign the bill. From my perspective, the bill is a slam dunk — it helps families, saves the state money from day one, and costs subscribers just pennies per month in additional premiums. Over the long-term, every child who grows up to be a productive citizen will be a net contributor to the state’s economy instead of requiring thousands of dollars in safety net supports each year. Still, Senator Steinberg and many of us in the autism community are worried that the Governor doesn’t “get it.” It was wonderful to see my old comrades, and reflect on just how far we’ve come since 2005, but we could be right back where we started if Governor Brown does not sign SB 946.
You can help, by signing an online petition to urge the Governor to move California forward and pass the autism treatment mandate (as 27 other states have already done). The insurance companies are arguing that “we just can’t afford” this bill, but they are wrong. Children with autism, their families and California taxpayers can’t afford NOT to pass SB 946.
Wednesday, October 5, 2011
Origins of the California Mandate Bill
The California mandate is on Governor Brown's desk, amid speculation that he might veto it. Rachel Norton writes at The San Francisco Chronicle: