Debate over autism coverage continues as mom sues providers for discrimination

Tracy Reid is suing insurance companies and the state for not covering therapy that helped cure her autistic son Max, 7, of his most severe symptoms.
Tracy Reid is suing insurance companies and the state for not covering therapy that helped cure her autistic son Max, 7, of his most severe symptoms.
courtesy Tracy Reid

Tracy Reid's seven-year-old son, Max, was diagnosed as severely autistic in 2008. Over the next two years, he experienced huge gains through a type of treatment known as Intensive Early Intervention Behavioral Therapy, or IEIBT. Advocates say it's the closest thing to a cure for autistic children, and 31 states require insurance companies to cover it.

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Why does Minnesota have the nation's highest autism rate? One in every 81 births here is an autistic child -- twice the national average

But, despite legislative efforts, Minnesota's not one of them. When Reid's old provider, Health Partners, balked at the therapy's hefty price tag, Reid, a systems-savvy lawyer, quickly switched her son's coverage in order to keep him in treatment.

Once Max's prognosis improved though, "Suddenly I had the space to be angry again," Reid said in our January 2011 cover story on the subject. "I was thinking of all these other people. That's when I knew I was going to sue them."

Now, two years later, Reid's making good on her word. On November 30, she filed suit against HealthPartners, Blue Cross Blue Shield, and the Minnesota Department of Commerce for discriminating against her son.

When Max was first diagnosed autistic, he hated physical contact, was prone to violent tantrums and getting kicked out of daycares, and had an I.Q. in the first (lowest) percentile. Reid, a single mother, feared that as he got bigger she wouldn't be able to care for him.

Reid details one particularly harrowing pre-IEIBT incident in her recent complaint. She was with Max at Choo Choo Bob's Train Store, and after playing with Thomas the Tank Engine, picked Max up to leave. Max head-butted her so hard that she dropped him.

Her head was ringing and her vision was blurry, and Reid worried both she and Max might be concussed or injured. She didn't seek treatment, however, out of concern that a hospital would "cite her as unable to meet Max's special needs."

Days later, Reid began seeking more help, and by the end of the summer, enrolled Max in up to 40 hours per week of IEIBT.

Some studies show that nearly half of autistic children treated with the method emerge with "best outcomes." In other words, a diagnosis that takes them off the autism spectrum, and into "normal" ranges, entirely.

Max was one of them. After about a year in IEIBT, his mental tests, I.Q. included, all registered in a normal range. As Reid's complaint describes, Max has friends, shares his toys, loves reading (particularly Captain Underpants books), "tells jokes which generally make no sense and is a very happy and funny kid." His violent episodes, which peaked at 20 per hour, are now closer to zero per week.

But as our cover story detailed, Reid's insurance, HealthPartners, wouldn't cover the treatment. Costs for IEIBT can run up to $100,000 per year for the first few year's of a child's life.

Advocates say that stacked against the expenses of life without treatment, IEIBT is a deal. As Nick Pinto reported, "When you factor in the cost of 18 years of special education and a lifetime of care-giving, the heavy investment in a few years of IEIBT looks like a relative bargain." (One study calculated that "Texas would save $2.90 billion by treating its autistic children with IEIBT.")

(For more, click to page two.)

After the City Pages story ran, Reid switched to Blue Cross Blue Shield, which was supposed to cover the therapy. But after just one month on the new plan, the company denied coverage for Max's IEIBT. Reid appealed and got it reinstated, but a few months letter, received a letter that BCBS was altering its policy altogether, and no longer paying for any IEIBT. This time, there was no way to dispute the changes.

So Reid is suing both providers and the state Department of Commerce. She alleges violations of Minnesota's mental health parity law, which is supposed to ensure equal access to both mental and physical health services, as well as two state insurance statutes, the Human Rights Act, the Americans with Disabilities Act, and others.

Though Max no longer receives as much therapy, Reid believes that pressing her case is the right thing to do for others in the same situation.

"Now 1 in 88 kids are getting diagnosed as autistic," she says. "That's a huge portion of our population. With the right therapy, and this isn't a long shot, these kids can have the same IQs as the rest of us. But that's not going to happen if we don't give them the right therapy.

"They have the right to live those lives," she continued.

Reid admits that under Minnesota law, her case isn't a strong one. Not only is there little precedent -- a high-profile case about IEIBT last year focused just on inconsistent coverage for poorer families -- but our state's mental health parity act is, in Reid's view, weakly worded.

"Our act's language is so dense that it's harder to make inroads," Reid says. After reading through the statute, she asked, "Does that tell the common person that you have a right to mental health care?"

Reid's a practicing family attorney, and represented herself to file her complaint. But she's unfamiliar with the intricacies of health care law, and so is seeking an outside firm to take her case.

She also knows that she's addressing big business, and worries about the other side's lawyers burying her in paperwork. If she doesn't find someone else to help with her suit, Reid says, "They'll end me."

Here's her full complaint:

Related coverage:
- Mario Cortolezzis rips off autism charity he founded for his son
- The Minnesota Disease: Autism in the Somali community

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