State Regulators Pass Emergency Measures to Ensure Autism Coverage

New emergency rules won't let insurers illegally limit therapy visits.(shannonrosa/flickr)

California regulators have issued emergency regulations aimed at keeping insurance companies from delaying or denying coverage for autism treatment.

Insurance Commissioner Dave Jones announced the approval of emergency rules this week, which take effect immediately.

“Autistic children and their families should now, without delay, receive the transformative treatment that will enable them to succeed in school, their families, and communities,” Jones wrote in a statement.

Insurers have already been required to comply with medically necessary treatment by the state’s Mental Health Parity Law and SB 946, which reinforced the mandate for private insurers to provide behavioral treatment for autism.

However Karen Fessel, executive director of the Northern California-based Autism Health Insurance Project, says these emergency regulations were needed.

“This is an example how even with the right laws in place you still need vigilant regulators who will help interpret the law in ways that they were intended,” says Fessel “Because the health plans often twist things around so much people don’t get the care they need even with the laws.”

Fessel says even with the laws her organization heard from many people getting frivolous denials.

“They were denied by insurers saying your child is too low functioning to benefit from the therapy,” says Fessel. “And if they were high functioning they’d say ‘your child doesn’t need the treatment,'” even though the child was having behavioral issues in the community.

One specific change is banning visit limits or cost limits on coverage unless limits apply equally to all benefits under the policy. Fessel says until now the limits were way too low.

“On average a lot of these policies were limited to 30 sessions a year for speech and occupational therapy,” Fessel says. “Whereas what is needed is 2 a week of speech and one a week of occupational therapy.”

One of the other issues addressed by the emergency regulations were consumer complaints about undue delays. Bryna Siegel, retired Professor and Director of the UCSF Autism Clinic, says the new rules are sensitive to the fact that many insurers are requiring patients to get IQ tests before they can get treatment.

“I have been getting a large number of calls from parents saying they need intelligence testing to go forward with insurance companies,” says Siegel. Siegel says the insurance companies may be using the results as a way to set expectations for treatment. But she says in this case, “I think it is being thrown up as a barrier, you have to wait to get it done, submitted, looked at.”

The president of the Association of California Life and Health Insurance Companies (ACLHIC), Brad Wenger, said in a statement that the organization had been interested in getting clarification on these topics but hoped for a public comment period.

“‘Emergency’ regulations shortcut the public comment process and deny stakeholders an opportunity to contribute their expertise and viewpoints,” said Wenger.

Wenger added, “A patient who is denied coverage on the basis of medical necessity, whether it is related to a mental health condition or a medical condition, can appeal that decision to an independent medical review board comprised of independent medical experts whose decisions are binding on insurers.”

There is a financial element to the rules as well. This emergency regulation is expected to save California taxpayers approximately $138.8 million to $197.8 million over the next year by shifting some of the costs for the therapy from the state to private insurers.

State Regulators Pass Emergency Measures to Ensure Autism Coverage 25 May,2016Rachel Dornhelm

  • In May, 2013 a new edition of the Diagnostic and Statistical Manual of Mental Disorders–DSM, which is used to diagnose autism, will be published. Many parents are worried because high functioning forms of autism will be eliminated from the definition of autism.
    All those telling us that autism is costing too much need to realize that there are a million children with autism who will eventually age out of school and become dependent on the taxpayers for their support and care. When that happens, no one will be able to refuse to pay.
    The cost of care for a generation of Americans with autism will be the responsibility of the taxpayers. Estimates for lifetime care cost for one person with autism range from $3.2 million to $7 million.
    Anne Dachel, Media editor: Age of Autism

  • In Dec, 2012, Newsday published the story, New autism definitions will leave too many out of services
    The changes to the DSM will affect insurance coverage for autism treatment. Newsday: “The manual is used by clinicians to assign diagnoses — and therefore affects the decisions of insurance companies about reimbursements to providers.”
    Anne Dachel, Media editor: Age of Autism

  • On August 18, 2012, the Jerusalem Post had a story about a non-profit organization called ICare4Autism that had recently held an international conference there. One of the keynote speakers, Dr. Stephen Shore from the U.S., talked about the DSM 5 changes and the state of autism in America. There was some surprising information.
    “Some health insurance firms are behind the restructuring of the DSM V definitions, he maintained.”
    It seems the epidemic of autism is costing too much.
    Anne Dachel, Media editor: Age of Autism

    • 1) Autism is not an epidemic. Under- and better diagnoses are the primary reasons for the upswing in autism rates in the past two decades.

      2) This story is about insurance companies being required to pay for autism services rather than squirm out of them, so your comment is not really relevant here.

  • lilady R.N.

    Still spamming autism articles with your huge repository of anti-vaccine, pseudoscience Spam, Anne Dachel?

    When was the last time you or any of your groupies at Age of Autism ever advocated for additional funding to provide funding for therapies that actually *work* to enable autistic children and adults to become full participants in society?

    Your activities at AoA and the other bloggers at AoA, are a testament to your support of dangerous, invasive, unproven therapies (chelation, castration, bleach enemas and stem cell intrathecal IV therapies at unregulated off-shore *clinics*), are an abomination.


Rachel Dornhelm

Rachel Dornhelm has worked as a reporter, editor and producer in public radio for the last twelve years. She got her start in New York City at WNYC and went on to work with the national business program Marketplace, WBUR’s “On Point” and KQED News in San Francisco. Her work has been honored by the LA Press Club and the SF-Peninsula Press Club.

Rachel has a BA with honors in anthropology from Rice University and did graduate work at NYU.

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