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When companies don't cover autism therapy, families suffer

When companies don't cover autism therapy, families suffer

Picture of Viji Sundaram

In an opinion piece in the Wall Street Journal in 2009, Whole Foods CEO John Mackey wrote that “a massive new health care entitlement” will move the United States “much closer to a government takeover of our health care system.”

In that same piece, Mackey said that both Medicare and Social Security entitlements are taking us to a point where “we are rapidly running out of other people’s money.”

As an alternative to government programs, Mackey has elsewhere touted the benefits of Whole Foods’ self-funded health insurance plan. It’s a form of health coverage where the employer has more discretion to tailor the health care plan, with the ability to add or subtract such benefits as preventative care and mental health care, which are now mandated under Obamacare. And because it’s regulated largely by federal ERISA law, not the newer, more stringent Affordable Care Act, the employer can skirt many of Obamacare’s mandates. That’s probably why insurance companies have in recent months begun promoting self-funding even more enthusiastically as an attractive alternative.

Under Obamacare, large companies do not have to include the so-called 10 essential health care benefits, one of which is mental health care. Whole Foods’ offer of free, unlimited phone consultations and three to five short-term face-to-face sessions per issue to employees may sound generous, except that if these services are listed as a provision in the company’s health care plan, Whole Foods could be in violation of the federal mental health parity law. The law says that when health insurance plans provide coverage for mental ailments, it must be comparable to coverage for physical ailments. If, on the other hand, the mental health services the company offers is outside the plan, then it may be well within its legal rights to limit it. Shannon Penrod, the mother of the young autistic boy who was featured in my story, was told by Whole Foods that Applied Behavioral Analysis (ABA) therapy was not part of the company’s health care plan.

By comparison, 10 states currently cover ABA therapy – the standard treatment in the U.S. for autism – in their Medicaid plans, some after being sued. It’s been a hot issue in California in the last year or so, especially since thousands of children transitioned last year from Healthy Families to Medi-Cal. The move left some 500 families without ABA benefits because the state Department of Health Care Services, which runs Medi-Cal, told them the state could not afford to provide the therapy.

Thirty-seven states currently require insurers to provide ABA therapy – at a minimum, the mandate applies to plans for state employees, while other states extend the requirement to individual or group policies. But only 24 states and D.C. currently require that policies purchased through state exchanges include coverage for autism treatment.

“It’s disgraceful to not provide this critical service for poor children,” said Elizabeth Landsberg, director of advocacy for the Western Center on Law and Poverty.

But there are signs that this could change. In the last month, both the California Senate and Assembly budget subcommittees considered the issue of restoring ABA therapy to Medi-Cal beneficiaries. For that to happen, though, the issue must win legislative approval, as well as approval from the Centers for Medicare and Medicaid Services. No legislation has yet been introduced.

Many major U.S. corporations – Yahoo, eBay, Apple, Capital One, General Motors and IBM, to name a few – offer the therapy in their self-funded health plans, even though they aren’t required to do so. Microsoft and Intel were among the first to cover the therapy nearly a decade ago.

(Boeing, another company with a self-funded health plan, was sued last month for allegedly excluding ABA therapy from its coverage plan.)

But Whole Foods is not among that list of forward-thinking companies whose plans cover ABA therapy. I wonder if Mackey, who is running a publicly traded high-end grocery chain that reeled in $12.9 billion in revenue last year, could put himself in the shoes of a middle-class U.S. worker with an autistic child whose Applied Behavioral Analysis therapy –– could cost the worker upwards of $60,000 a year.

Mackey believes that most of the diseases that kill us are mostly preventable, through proper diet, exercise and change in lifestyle, as he says in his WSJ piece.

But there is still a lot of speculation about what causes autism, a complex developmental disability. Scientists believe that the disorder could be partly hereditary and partly caused by environmental factors.

Even if Mackey himself has a self-funded health plan identical to what he gives his team members, he likely has the financial wherewithal to dip into his pockets and spend on expensive medical care should any member of his family need it. Young Jem, featured in my story, comes from a family of modest means. (His family was lucky enough to receive more than $100,000 in state-funded treatment over five years.)

Whole Foods projects itself as being progressive. Kristin Jacobson, co-founder of the California-based Autism Deserves Equal Coverage and statewide policy chair of Autism Speaks, wonders how it can do that and still “exclude a vital benefit for a significant portion of its workforce.”

Last year, when the global financial services firm JPMorgan Chase decided to add ABA therapy to its self-funded health plan, Michael Giangregorio, vice president in U.S. Fixed Income at Chase, said in a press release: “For many years, my son was unable to receive the necessary treatments he needs due to a lack of insurance treatment coverage. This change will allow us to provide a therapy that will help him prosper” and reach “his fullest potential.”

Mr. Mackey, are you listening?


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Until your company changes its benefits for employees to include coverage for Autism Spectrum, my family will cease shopping at Whole Foods. Yeah, one family won't make a dent. But us Autism Families have loud voices. Your next quarter sales figures will hear us! BOYCOTT WHOLE FOODS!

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Not just ABA. Self-funded plans often don't cover meds, CBT, BASIC treatment for children on the spectrum or with other developmental disorders, orcADD/ADHD. Sad.

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You're absolutely right to point out that John Mackey's being hypocritical to claim that private employers should handle insurance while failing to provide sufficiently comprehensive insurance to his employees.

Overall, though, I think this is one more example of why the US should move away from its reliance on employer-sponsored insurance. Even among fairly large employers who self-insure, a handful of high-cost diagnoses -- autism, advanced cancer, hemophilia, premature babies with extensive medical needs, etc -- can cause health spending to jump, which will then translate to some combination of higher cost-sharing or reduced benefits for employees and their families. It makes much more sense to spread the risk of high-cost conditions over a population larger than a single company's workforce.

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It all adds up. As an accountant, I know that. I too will cease shopping at whole foods until they add ABA to their health plans. I hope you will join me.

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