Families say it will still be difficult to find treatment

Sacramento, CA — Leading autism and consumer advocacy organizations in California are calling a settlement agreed to last week between the state and Blue Shield of California to expand coverage for autism treatment a “sham” that will not result in more therapy for people with the condition.

In a letter to Gov. Jerry Brown, the advocates say the settlement – which was announced and described by officials with the Department of Managed Health Care at a legislative hearing last week – “contains such onerous requirements for families with autistic children that it will lead to delays, interruptions and continued denials of treatment.”

The agreement, which some at the hearing called a potential breakthrough, was later posted on the department’s website. The letter sent to Brown this week was signed by representatives of Consumer Watchdog, the Alliance of California Autism Organizations, the Special Needs Network and a parent of an autistic child.

“With my own experience and with helping other families that have been through this, the agreement has the same loopholes and problems that have been barriers for people to have access to services in the first place,” said Sally Brammell, a San Francisco parent who signed the letter and said she spent 12 months jumping through hoops to get her son medical treatment.

The department announced Tuesday that it had reached a second and virtually identical settlement with Anthem Blue Cross, and officials defended the agreements.

The department “disagrees with the characterizations brought by some advocacy organizations regarding settlements reached to provide necessary services to families affected by autism,” said Lynne Randolph, spokeswoman for the California Department of Managed Health Care. “With the settlements, the department opted to take the path which would lead us to immediate coverage for many more children and not bring us back to endless legal challenges or roadblocks from health plans.”

Blue Shield of California maintains that the agreement is intended to cover any customer who needs the services, though a spokesman said court proceedings would continue.

‘Doing it in good faith’

Tom Epstein, vice president of public affairs for Blue Shield, said the company agreed to provide “services we don’t believe are legally required. We are doing it voluntarily and doing it in good faith to get people access to care they believe they need while these issues are litigated.”

At issue is a specific treatment known as applied behavioral analysis that experts call the most effective treatment for autism. However, insurance companies say it is not a medical treatment. Autism diagnoses have been growing rapidly, and about 1 child in 110 has an autism spectrum disorder, according to the Centers for Disease Control and Prevention.

The behavioral treatments are specifically designed for each patient and often take months of reinforcement. Therapists seek to focus on the environment surrounding a certain behavior – such as what happens before and what happens after successful communication – and use that to reinforce the behavior.

It’s an intensive treatment that has been described as rewiring the brain.

Advocates say the main problem with the settlement is that it requires applied behavioral analysis providers to have a license or be supervised by a licensed individual. However, no state license exists for the therapy and advocates do not believe other licensed medical professionals will take on that duty.

“It is unlikely that licensed clinical social workers, for example, would be willing and able to supervise and pay for liability insurance covering services done by others and outside of the scope of their practice and expertise,” the letter states.

Kristin Jacobson, who represents the Alliance of California Autism Organizations, which is made up of about 40 groups, predicted that under those criteria, of the tens of thousands of children who need the treatment, only a few would find a provider to offer it.

No guarantees

“I would say significantly less than 1 percent” of children who need the therapy will get it, she said.

Advocates also said the agreement does not ensure that there will be a network of providers for the services.

State Senate President Pro Tem Darrell Steinberg, D-Sacramento, chairs a special committee on autism that has been working on the issue. He said he believes the advocates are correct in their assessment, and he plans to take further legislative action in the near future.

Steinberg already has a bill that would require insurers to cover behavioral therapy. He called the agreements “forward movement” but added, “This very real issue about access to qualified providers … should not wait until January or sometime next year. It needs to be resolved on behalf of families and children before this year’s legislative session is over.”