BRIAN ROSENBERG SUFFERS
from autism. And while that term can describe a wide range of developmental problems, says Jon Rosenberg, Brian's father, "My son is at the severe end of the spectrum." At that level of severity, he explains, "Kids don't know how to imitate, and that's how most kids learn. It took weeks to teach my son to get himself a glass of water, months to teach him how to use a fork and spoon."
Brian has learned these skills by working one on one with a behavioral therapist, day in and day out, since his diagnosis. Behavioral therapy for autism can cost as much as $60,000 per year, a serious financial challenge for a family whose insurance won't cover it. Indeed, many families have no coverage for the services that autistic children need most. The Rosenbergs are lucky: Jon's employer, the software giant Microsoft, covers behavioral therapy as part of its health-benefits package. But that wasn't always the case and the story of how the policies changed at the Redmond Empire is instructive for any family facing a costly medical problem.
Statistics collected yearly by the Department of Education show that the number of children between ages 6 and 21 with autism or autism-like developmental disabilities has increased by 500% in the last decade. A recent report by the federal Centers for Disease Control and Prevention shows that as many as one child in 150 is now diagnosed with an autism-type disorder. While doctors have been unable to explain the reasons behind this startling increase, research on how best to treat and teach autistic children has confirmed the value of an early intervention program that relies on intensive behavioral therapy. More than 500 medical studies published in the last two decades support the idea that behavioral techniques, focused on teaching everything from language and academics, to basic life skills, can help substantial numbers of preschool-age children with autism achieve intellectual, academic, communication, and social skills that approach normal range.
Yet, too often health insurers do not cover such treatment, and few corporate benefit managers are aware of the significant problems this gap in coverage creates for their employees who struggle to pay for their autistic children's therapy.
Jon Rosenberg was determined to change all that, if not in the world as a whole, at least in the world of Microsoft. "About eight of us parents got together in 1999 and were comparing notes on how behavioral therapy was effective for our autistic children," he recalls. They decided that each would send an email to the president of human resources at Microsoft. "Each of us told him about autism, how it affected our children, about behavioral therapy and what a great, positive impact it was having on our children and our families."
The company immediately promised to look into the issue but it probably wouldn't have done so without prompting. "That started the dialogue," recalls Mark Stoppler, program manager for U.S. benefits at Microsoft. At the time, Stoppler says, very little was understood in the insurance and benefits world about autism or autism treatment. Coverage of speech therapy, physical, and occupational therapy was typically denied because insurers assumed that speech would eventually come to all children, and that occupational and physical therapy were appropriate treatments only for adults.
To its credit, Microsoft did not take those assumptions for granted. "We worked extensively with the University of Washington's autism center to get an understanding of the condition, the types of treatment available, which showed the most promise," explains Stoppler. The university provided background on Applied Behavioral Analysis, a type of behavior therapy for autism that has proven successful in many clinical studies. Once Microsoft decided ABA would be worth covering, the school helped the company design a benefit plan around the treatment.
Microsoft, a self-insured health-care provider, pays 80% of the cost of ABA. Because research suggests that the type of early intervention needed by most autistic kids required three years of intensive behavioral therapy, Microsoft imposes yearly and lifetime limits based on those assumptions. Microsoft recognizes and compensates for two levels of care: The benefit provides for a program manager who oversees each child's entire treatment program, as well as for the therapy assistants, who are the day-to-day providers of the therapy. Speech, occupational, and physical therapy recommended by the program manager are also covered at 80%.
To employees of Microsoft who have autistic children, the value of these benefits is almost incalculable. "This therapy is literally Brian's lifeline to the world the rest of us live in," says Jon Rosenberg. "It gives him a sense of control in his life. Brian is 14 now, and I can see by 20 or 25 he will have learned enough to have independence in his life." Better still, "Now, the world is not just a place making all of these demands on him that he doesn't understand, it's a place he can have fun, too."
Microsoft's approach to autism benefits remains more the exception than the rule. But a few other corporations have taken similar steps. Home Depot, for example, began covering the full range of treatment for childhood autism as part of its health insurance benefits for the company's 365,000 employees about eight years ago. Roughly a year and a half before autism coverage was added, employees who had been denied behavioral, speech, physical and occupational therapies for their autistic children had to appeal the denials, first to the company's insurance carriers, then to the company's benefits managers. And often, even the appeals were denied.
According to Illeana Connally, the company's vice-president for benefits, Home Depot eventually was persuaded by unhappy employees to look more deeply into the issue of autism. Connally and her staff consulted various research centers that specialize in the treatment of children and adolescents with developmental disabilities, including one that was particularly close to home: the Marcus Institute in Atlanta, which was originally founded through a gift from Bernard Marcus, the founder of Home Depot, and his wife. Home Depot eventually fashioned a package of autism benefits that was essentially written by medical experts from the Marcus Institute and the Kennedy Krieger Institute, a treatment and research center in Baltimore. The policy covers cognitive behavioral therapy, occupational therapy, speech therapy and physical therapy for children with autism, as well as for kids with Down Syndrome, cerebral palsy or a severe neurological or genetic disability.
Connally is hopeful that a wider array of companies will institute autism coverage in the future. Indeed, advocates of such care may have numbers on their side: The one major cost-benefit analysis of behavioral therapy for autism, a study published in 1998 in the journal Behavioral Interventions, suggested that the savings in unneeded social services could be substantial if every autistic child was offered these services. Using a model that assumed preschool children with autism would receive three years of early intensive behavioral intervention from age 2 until they entered school at age 5, the study concluded that by investing about $50,000 per child yearly for three years, more than $1 million per person would be saved by the time these children became 55-year-old adults. Since as many as 500,000 kids may be diagnosed with autism by 2010, early behavioral therapy looks like it could be a good investment.