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.
Other studies show that the cost of not offering the therapy is even more expensive. 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.
More and more states are recognizing this and requiring insurance providers to cover IEIBT the same way they're required to cover other medically necessary treatments. Minnesota has laws on the books that autism advocates say should require IEIBT coverage, but so far private insurers have successfully argued otherwise. After a bill to make the requirement more explicit was killed in conference committee last year, advocates aren't optimistic about a legislative solution.
"That's why the lawsuits are going to be important," says Amy Dawson, who runs the Austim Advocacy and Law Center in Edina and is representing another mother suing over denied IEIBT therapy. "At this point, I think that's where this is going to have to happen."
MUCH OF WHAT today is categorized as IEIBT has its roots in the work of Ivar Lovaas, a Norwegian doctor who began working with autistic patients in the 1960s. Back then, autism was thought to be an untreatable condition, and most patients were confined in prison-like sanitariums.
Lovaas was heavily influenced by B.F. Skinner, the Harvard psychologist who popularized the idea that behavior is shaped by conditioning. People and animals will repeat behavior that is rewarded with some kind of positive feedback, Skinner argued, and will stop doing things that result in negative feedback like physical pain.
"Lovaas believed Skinner's ideas might benefit the autistic," says Eric Larssen, who worked with Lovaas. "At first he could only convince people to let him work with the worst of the worst, the people in locked wards, who were violent towards others and themselves."
Using a combination of positive reinforcement, like praise and treats, and negative reinforcement, which in those draconian days included hitting, shouting, and electrical shocks, Lovaas was able to make progress with many of his patients.
As time went on, he determined that not only was the negative reinforcement disturbing to people with less scientific sensibilities, it was also ineffective as a treatment.
Lovaas continued to refine this autism treatment until his death last year.
In 1987, he published the first in a series of studies that found that when young autistic children received several years of intensive behavioral therapy, nearly 50 percent of them achieved "best outcomes": reaching a normal IQ, losing their anti-social behaviors, and gaining the skills necessary to go to school like any other child. These kids no longer met the diagnosis for autism. They were, effectively, cured.
Lovaas's work rocked the scientific establishment, suggesting that autism, far from being an irreversible condition, could be cured if caught early and treated aggressively enough.
Not everyone was impressed with Lovaas's work. The psychological establishment remained deeply skeptical of Skinner's behaviorism and everything that came out of it. Some worried that Lovaas was doing nothing more than creating little robots.
But as more studies have piled up suggesting that Lovaas was on to something, the treatment has gained acceptance by the mainstream.
Some people are initially put off by the dog-training aspect of the therapy, but Eric Larsson, who runs the Midwest branch of the Lovaas Institute, one of the major Minneapolis providers of behavioral therapy, says there's nothing disturbing about it.
"This is how we all shape our behavior, to one degree or another. More importantly, this is what works," he says. "We've been overcoming resistance in the scientific community, but we're still facing another obstacle: that's getting insurance companies to cover it."
AS THE MEDICAL science of mental health has advanced, the law has struggled to keep pace. It was only two years ago that Congress passed the Wellstone-Domenici Parity Act, which requires insurance plans to use the same standards for coverage of mental health as they do for physical ailments.
Minnesota statutes contain a similar clause, requiring insurance providers to cover mental health services "consistent with generally accepted practice parameters as determined by health care providers."
Insurance companies have quibbled over the interpretation of the law, however, so last year state Rep. Kim Norton of Rochester introduced a bill explicitly mandating that insurance companies cover IEIBT. Norton based her legislation on the language from several of the states that have already adopted IEIBT mandates, including Arizona, Florida, Illinois, Indiana, Louisiana, Pennsylvania, South Carolina, and Texas.
"I thought, 'Minnesota is supposed to be such a forward-looking state that takes care of its own, this is something we ought to have,'" Norton recalls.
But the bill met stiff resistance from the Chamber of Commerce and the National Federation of Independent Businesses, whose lobbyists argued that forcing coverage would lead to unacceptably high insurance costs.
"IEIBT would be the single most expensive mandate ever," says Mike Hickey, a lobbyist for the National Federation of Independent Businesses. "Everyone wants to help families of kids with autism, but this would drive costs to the point that a lot of companies would just stop providing group coverage altogether."
But Hickey's argument was undermined when supporters of the bill pointed out that one major Minnesota insurer already covers IEIBT: Blue Cross Blue Shield. The company is still in business, offering rates competitive with those that don't cover IEIBT.
Besides, Norton argues, the state pays an even larger price in the long run by not treating autism.
"This isn't just about the kids," Norton says. "This is about fairness for the state and its taxpayers. Because as these kids get older, we all end up paying for them."
A 2007 study in the Journal of Child Family Studies found that while IEIBT can be hugely expensive in the short run, it's far cheaper than 18 years of special education. Factoring in IEIBT's success rate, the study calculated that Texas would save $2.09 billion by treating its autistic children with IEIBT.
But that won't be happening in Minnesota. Norton's bill passed the House, but died in conference committee negotiations.
"That was a huge disappointment," Norton says. "It was a chance to make such a huge difference in these kids' lives."
EARLY ON A Thursday morning, Max Reid is putting peanut butter on a slice of toast for his mom.
A sunny five-year-old with broad features, brilliant red hair, and a dazzling smile, Max has come a long way from his days of violent rages and introversion. He's a budding conversationalist and music lover.
But Max still has a ways to go in many areas, and his therapy is an ongoing process. This morning he and Tracy have stopped off at his favorite restaurant, Yum, on the way to his preschool program. Joining them is Max's IEIBT therapist.
"One of the areas Max still needs to work on is his fine motor control," the therapist explains. "Tracy, would you like Max to put some peanut butter on that slice of toast for you?"
Partway through, Max gets frustrated. "Can I have some of the muffin now?" He asks, eyeing a blueberry muffin at the far corner of the table that is being reserved as a treat once he gets through this task.
Tracy glances at the therapist. "What do you think?" she asks, but already knowing the answer, turns back to Max. "Why don't you finish making this toast for me, and then you can have a bite."
Max sighs and returns to his task, his brow furrowed in concentration as he clumsily smears peanut butter across the toast. The result isn't exactly spectacular, but both adults agree it's a good enough effort for the day. Max gets his muffin.