By Jesse Marx
By Chris Parker
By Jake Rossen
By Jesse Marx
By Michelle LeBow
By Alleen Brown
By Maggie LaMaack
By CP Staff
Tracy Reid was bawling uncontrollably, and the medical specialist sitting across from her couldn't understand why. She had just told Reid that her five-year-old son Max scored normally on a battery of mental tests and had an average IQ. What was there to cry about?
Through her tears, Reid tried to explain: The assessment of Max brought to a close three years in which the single mother thought her son would never be normal, would never be able to go to college, would never be able to take care of himself.
Reid hadn't let herself cry since Max was diagnosed with autism. He showed many of the obvious signs: He didn't like to be close to other people, wouldn't make eye contact. He was slow to learn to talk, and fell behind the curve in picking up the skills most young children learn. He threw violent tantrums.
On her dresser at home, Reid kept a picture of what would probably be the only kiss Max would ever give her. Captured against a photography studio backdrop, the shot shows Max lunging at his mother in a bizarre, open-mouthed embrace.
Shortly after the picture was taken, Max became so uncomfortable with physical contact that kisses were unimaginable.
When Max was diagnosed with autism in 2008, the outlook wasn't good. His IQ classified him as mentally retarded. On the Global Areas of Functioning scale, a way of measuring how well you fit into society, he scored an abysmal 45. Reid wouldn't admit it to herself at the time, and even now feels ashamed to say so, but as the scope of Max's problems became clear, she felt like she was grieving the loss of her son.
Still, she wasn't ready to give up on him. She had health insurance through her work as a lawyer at the Legal Aid Society, and set about looking for treatments that could help Max. Eventually, she found the Minnesota Early Autism Project, which has had good results with a form of treatment called Intensive Early Intervention Behavior Therapy, or IEIBT.
The therapy is certainly intensive: Therapists from the project spent 35 hours a week with Max, alone and also with Tracy, using a system of positive reinforcement to correct his behavior and teach him the skills that other children pick up naturally. From early on in the treatment, it was clear it was helping like nothing else had.
But there was a problem: Not long after Max started the therapy, Reid got a letter from her insurance company, HealthPartners. They wouldn't cover the treatment at the Minnesota Early Autism Project. In fact, they wouldn't cover any kind of IEIBT at all.
Reid appealed, but to no avail. In March 2009, she got a letter from HealthPartners: "The Board of Directors Member Appeals Committee members understand that these services have been beneficial for Maxwell, and they appreciate that you are advocating for your son," the letter read. "Unfortunately, the Committee was unable to overturn the plan's exclusion of coverage for these services."
Instead, Reid was told, she should put Max on one of the long waiting lists for the non-IEIBT providers in HealthPartners' network.
Reid was furious. "I couldn't believe it," she says. "I've been paying my premiums all these years, this is the treatment that's helping my son, and they won't cover it because it's expensive."
But there was no time to fight. Reid needed to keep Max's treatment coming, and the quickest way to do that was to walk away from the fight with HealthPartners. While continuing to pay the private health insurance premiums for herself and Max, she switched her son's coverage to Medical Assistance. If HealthPartners wouldn't pay for Max's therapy, the taxpayers of Minnesota would. Max continued his treatment at the Minnesota Early Autism Project and made enormous strides.
By last October, after one of Max's regular battery of tests to evaluate his progress, the results dramatic: His cognitive scores were like those of a normal, healthy boy. He still had work to do in some areas, but his evaluators classified him as having "high-functioning Autism Spectrum Disorder."
Through her tears of relief in the consultation room, Reid thought again of HealthPartners' refusal to cover the therapy that brought her son so far, and of all of the autistic children whose mothers might not have the legal savvy to get past the brick wall.
"Suddenly I had the space to be angry again," Reid says. "I was thinking of all these other people. That's when I knew I was going to sue them."
REID DIDN'T KNOW it at the time, but she and Max had stumbled into one of today's most hotly contested battles over health insurance coverage.
A substantial body of research shows that IEIBT therapy can be incredibly effective in treating childhood autism, but the therapy is also mind-bogglingly expensive—the costs can easily run to more than $100,000 a year for the three to five years of treatment. With autism diagnoses on the rise, the private insurance industry has done everything it can to avoid paying for IEIBT.
But the growing medical consensus is that this form of therapy works. One study found that 48 percent of autistic children treated with it eventually achieve "best outcomes": Their IQs are in the normal range, they can go to school in a regular classroom without an aide, and they no longer meet the diagnostic criteria for autism.