Inequality in California

At The California Health Report, Heather Tirado Gilligan and Callie Shanafelt write:

California has approached the question of whether or not to mandate coverage of the intensive, expensive therapy in an especially curious way. The state mandates that all private insurance policies cover evidence-based autism treatment, including ABA. But California exempts Medi-Cal from that requirement. As a result, families with private coverage get ABA for their autistic children. But most of those who are low-income and covered by public insurance do not.

The California Department of Health Care Services, which declined to be interviewed for this article, provided a statement saying that ABA is covered by services offered to the disabled at regional centers. The centers are tasked with helping adults and children with disabilities.

Most autistic children, however, don’t qualify for ABA at regional centers, advocates say. “The problem with the regional center is that you have to have a certain level of disability to qualify,” [Karen] Fessel says. That level of disability, she adds, is profound. “If you don’t qualify, you’re basically hosed.” She estimates that 500 low-income families have already had treatment for their autistic children disrupted since the switch from Healthy Families to Medi-Cal.

For families with autistic children, fighting for benefits is par for the course. Fessel, for instance, founded the Autism Health Insurance Project after her own difficulties getting her insurance policy to cover treatment for her son, who has Asperger’s syndrome.

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Fessel finds it difficult to understand the logic of a law requiring therapies for some autistic children but not others. The legislation that mandated coverage for ABA, Fessel notes, recognized the need for therapy as urgent while excluding a population of kids on Medi-Cal. “How can it be urgent for people with money,” she asks, “and not urgent for people without money?”

In the same publication, Robin Urevich writes:

A group called Concerned Parents Association of California says school districts routinely discriminate against kids with disabilities, while the state agency charged with enforcing the IDEA, the California Department of Education (CDE), looks the other way. The Concerned Parents Association, along with the Morgan Hill Concerned Parents Association, is suing the California Department of Education in federal court, saying the state’s special education system is in shambles and out of compliance with federal law in every way, beginning with its failure to stop segregation of disabled kids.
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[T]he Concerned Parents lawsuit alleges that school districts routinely fail to include parents in IEP meetings, and fail to provide the support services their children need to learn. Rony Sagy, the lead attorney for the plaintiffs, says general education teachers are overwhelmed and lack the training they need to educate disabled and typical kids in the same classroom. “As a result, they say we can’t deal with it. Kids with various disabilities are just warehoused in classes or programs that do little to improve their education results.”

The article updates a story that has appeared on this blog:

In Sierra Madre, the Brandenburgs embarked on an ultimately successful battle to keep Gabe in Sierra Madre Elementary, and prove he was wronged, an ongoing effort they say has taken over their lives and drained their finances.

Now, Gabe is in fourth grade—in a general education classroom—and is considered a gifted student, with a teacher who cares about him, his mother says. The Brandenburgs say they’re still pushing to get Gabe what he needs to learn—he doesn’t have a current IEP or behavior plan.

Mary, who attends school with him in the morning, picks up the slack. She’s coached him to tell his teachers how he feels when he’s frustrated, and she’s taught him a strategy to help him understand complicated instructions. Now when the 10-year-old needs time to process what he’s heard, he turns to his teacher and asks, “Can I have a moment?”

Life is calmer for Gabe, but Tony Brandenburg says the ordeal has taken a toll. “We’re not the same family we were in 2009. They’ve taken his childhood and he’ll never get that back.”