When Muhammed Almaliti was about 15 months old, his mom, Feda, noticed significant changes in his behavior.
"He lost eye contact, he wouldn't play anymore, he lost speech, and I just kept saying, something's wrong with my son," said Feda.
In fact, there was. Doctors diagnosed him with autism, but Feda says she soon learned Kaiser would not provide comprehensive treatment for her severely affected son.
"They just kept saying that, 'We don't give services to kids with autism.' And that's what really upset me is why kids with autism? Why don't they get services? Why do other kids get services and my kid doesn't?" said Feda.
"I think one of the biggest tragedies is the health plans are for-profit businesses (*see footnote). They make a lot of money, they collect premiums, these families pay premiums and they expect to get health insurance coverage," said Kristin Jacobson who represents the Alliance of California Autism Organizations and is the Autism Speaks Advocacy Chair for California. She says Kaiser is not alone in passing off responsibilities for treatment to school districts and regional centers.
"This is a medical condition. There's definitely an educational component that needs to be addressed by the school districts, but it's a medical condition," said Jacobson.
For two years Feda pushed Kaiser to provide treatment. Kaiser points it out it did give Muhammed more than 60 sessions of occupational therapy along with intensive feeding training and consultation with a pediatric psychiatrist. However, Feda says Kaiser twice discontinued the OT, once calling it educational.
"One thing that does come up is that every time you say, 'My child needs speech or my child needs occupational therapy,' they'll say, 'Well this is a behavioral problem, this is not a medical problem.' They say it's not medically necessary,'" said Feda.
"We have no argument that these have become standard treatments or standard services, the question remains are they medical services and should they be delivered under the rubric of a health insurance plan," said Dr. Sharon Levine, associate executive director of Kaiser Permanente. "Skill acquisition, whether it's play skills or academic skills, is not a health care service."
Regardless, Feda persisted and succeeded in getting speech therapy for Muhammed. It was eliminated though after four sessions, for what Kaiser called a "lack of progress."
"Which is absurd for a child this young and as effected as my child," said Feda. "If my child had cancer, they wouldn't say go get service somewhere else, they would treat the cancer. So why can't you treat my child's autism?"
"Attempting to return someone to the state that they were in before is a very different set of clinical situations than attempting to develop and acquire skills," said Dr. Levine.
Feda was frustrated she could not get recommendations or denials from Kaiser in writing.
"There's nothing you can do with that. You can't go to the Department of Managed Health Care, you can't go to any other state agency that regulates insurance companies. There's nothing you can do. It stops right there," said Feda.
However, Feda figured out a way around it. She spent a week drafting a letter detailing two years of verbal denials from five different healthcare providers. Kaiser would have to respond to it in writing.
They did, but disagreed. Her grievance ultimately reached the Department of Managed Health Care and her son's case received an independent medical review or IMR. It is a legally binding decision, in this case, by a doctor board certified in pediatrics and neurology who wrote, "I have determined that the requested services are medically necessary for treatment of the patient's medical condition. Therefore, the health plan's denial should be overturned."
"I was so, so happy. It was just an amazing victory. It was a lot of hard work," said Feda.
The IMR noted: "All of the services being requested by the patient are now the standard recommendations for autistic children -- two hours occupational therapy, two hours speech therapy and 26 hours of ABA per week."
This is an example of ABA or applied behavior analysis. It is intensive one-on-one therapy to help children with autism learn basic skills, from communicating to playing with others; skills that typical children learn naturally. It is a treatment deemed medically necessary by the IMR.
Does this change things? Could this open the floodgates? Will this one decision make a difference or do you take these case by case by case? We posed those questions to Dr. Levine.
"IMR was intentionally set up to address individual, specific issues. We don't think that the issue of contract can be or should be or was intended to be resolved through the independent medical review process," said Dr. Levine.
Advocates like Jacobson are energized by the decision.
"With proper treatment, there is an enormous amount of evidence that children make significant progress and can become much more fully functioning members of society," said Jacobson.
That is what Feda wants for her son and for all families struggling with autism.
"I hope that ultimately not everyone has to fight their own fight. I hope that it's just going to be a covered treatment for children with autism," said Feda.
Feda now runs an online help group for other families struggling to get the coverage they feel they deserve.
*Note: Kaiser is a not-for-profit entity.
- Kaiser Permanente Comments on Autism
- California insurance help support group - to assist in getting coverage for treatment: click here
To subscribe send an e-mail to ASDInsuranceHelpemail@example.com
- How to get involved to support insurance reform: www.autismvotes.org
- DMHC: www.hmohelp.ca.gov, or 1-888-HMO-2219; Bobbie Reagan (deputy director) 1-916-255-2405. (DMHC regulates about 80 percent of health plans covered by CA law, most HMOs and some PPOs (Blue Cross, Blue Shield)
- DOI: 1-800-927- Help (4357) (DOI regulates about 20% of health plans covered by CA law)
- Kaiser Support Group click here To subscribe send an e-mail to firstname.lastname@example.org
- Autism Insurance Website www.insurancehelpforautism.com
- Chris Angelo's analysis and letter: click here
- Medicare usual and customary rates: click here
- Literature: click here
- e-mail a parent advocate, we are happy to try to answer your questions if we can: