Eight years ago, Shannon Penrod and her husband were struggling to raise their 2-year-old son, Jem. The toddler threw frequent tantrums, bit and kicked people, lost the vocabulary he had built up since he was 9 months old, banged his head on the kitchen floor, flapped his arms and ran around in circles, and swiped things off the dining table.
When his pediatrician told the parents that the boy was autistic they decided it wasnt true. We were in denial, Penrod acknowledged, until people started saying, O my god, whats wrong with your child?
But Jems parents did eventually seek treatment for him, enrolling him at age three in a regional center in the Los Angeles area to begin Applied Behavioral Analysis (ABA) therapy.
ABA therapy is a highly structured one-on-one coaching by trained teachers, and has become the most widely used autism treatment in the United States. In California, 21 regional centers state-funded non-profit agencies that function as case managers provide the bulk of the treatment, with some school districts providing some basic therapy.
But ABA therapy is expensive, and treatment could cost upwards of $60,000 per year per person. The lifetime costs of treating one person with autism could be about $3 million, according to a Harvard School of Public Health study. Jems regional center spent nearly $100,000 on him in the first year, but a lot less in the subsequent four years of his treatment.
It has helped him considerably, said his mother. Today, the 10-year-old is at the top of his fifth-grade class, and only occasionally has some language problems.
The parents would like him to continue with a little more ABA therapy. They feel it would better prepare him for his teen years. But Jems fathers employer-sponsored health plan will not cover it.
Jems father works for Whole Foods Market, a supermarket chain with more than 360 stores in the United States and the United Kingdom. The company has a self-funded health plan for its U.S. team members, as its employees are called. But the plan offers no ABA therapy for autism.
Like Whole Foods, a number of large corporations that self-fund are excluding ABA therapy from their health plans, putting hundreds of their employees under a great deal of stress because they simply cannot afford to spend for the therapy themselves. Penrod said that before her son was enrolled in the regional center, she and her husband had to skimp on their own medical care so their son could get his mental health care.
Bypassing traditional insurance arrangements
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No Room for Autism Treatment in Self-Funded Health Plans