Several families of autistic children denied treatments by their health plans have won administrative appeals, in a sign that a recent court ruling scrutinizing regulators may be having an effect on the state’s handling of the cases.
In each of the five cases, the families appealed their denial of care to the state, to no avail. Now, however, state regulators informed the families in letters this week that Kaiser Permanente must provide them the costly behavior therapy they sought under the state’s mental health parity law.
Several parents called the victory “bittersweet” because they had to wait as long as a year without treatment or pay bills out-of-pocket for tens of thousands of dollars. No promise of reimbursement has been made.
Some said they were furious at the state Department of Managed Health Care for allowing health plans to delay their cases.
“We applied when my son was four, now he’s over five and I’m afraid we missed all that intervention time just waiting to hear from the department,” said Rachel Choi of Fremont, one of four Kaiser members who received a letter this week approving services.
Bay Area father Kevin Epstein, whose son Elliott was turned down for behavioral therapies by Blue Shield of California last year, also received approval. In his case, two physicians on a three-person panel ordered Blue Shield to cover 25 hours a week of therapy.
“I still have, after 13 months, no payment and no coverage,” Epstein said. “A decision is only worth the paper it is printed on unless it is enforced and I have yet to see that.”
The coverage orders are the latest in a legal war over who must pay for autism treatments, especially Applied Behavior Analysis or ABA. They come after controversial decisions by regulators to no longer review consumer complaints for ABA denials for “medical necessity.”
The top health plans in California have argued that some autism therapies recommended by doctors are actually educational, not health care services.
Kaiser has received copies of the letter and is reviewing them, a spokesman said. Blue Shield did not respond to a request for comment by press time.
Consumer advocates said denials of autism coverage affect hundreds of families in California.
A Department of Managed Health Care spokeswoman said the new coverage orders, which only affect five cases, were consistent with past positions. The department “has been working diligently to make sure that families dealing with autism receive the benefits they are entitled to under the law,” said spokeswoman Lynne Randolph. “Despite claims to the contrary, children are receiving speech, occupational and physical therapies they need to improve their health and well-being.”
The department had denied it would change course after a court ruling frowned on the state’s arguments for why it had not explicitly required plans to provide ABA.
In that ruling, L.A. County Superior Court Judge James C. Chalfant said regulators may have violated their own statute meant to protect consumers by writing an “underground regulation” that excuses HMOs from covering costly autism treatments. Chalfant called the regulation “inconsistent” with other state laws and openly challenged their legal interpretation.
That ruling, dismissing a demurrer motion, allowed a lawsuit to proceed against the state of California for its involvement in the autism cases. Trial is set for April, according to advocacy group Consumer Watchdog, which filed the complaint.
The ruling was not a final decision on the merits of the case.
Fighting to receive autism care, especially ABA therapy, from insurers has become a big issue for California patients.
Kaiser faces three class actions, including a discrimination claim, over autism coverage.
One issue is the state mental health parity law, which requires insurers to treat mental illness like other health ailments.
Autism is a spectrum of neurobiological disorders that are increasingly diagnosed in children as young as 1 year old. Treatments, which aim to correct behavior and teach children how to function despite the disorder, have become a sticking point because they can cost $70,000 a year.
The Department of Managed Health Care used to send disputes over autism coverage to panels of independent physicians for binding decisions.
In March, the department said in a memo that any autism case that centered on a “coverage issue” would not be sent to such a review. The change stoked anger from parents who viewed binding opinions from doctors as their best chance to win services.
As a result of that change, four of the five cases this week were not sent for binding doctor’s opinion, but were instead decided by the department’s own lawyers. As a result, families were forced to complete several added steps, and to provide new physician letters saying ABA was necessary and would have to be provided by a licensed provider.
Kristin Jacobson, co-founder of the group Autism Deserves Equal Coverage, said the resulting delay showed California has failed to fairly regulate autism care.
“While I’m pleased that we finally have some progress, I think the process these families had to go through and the length of time was completely unacceptable,” she said. “These families were asked to jump through hoops that people with other diseases would never have to jump through.”