Insurance for Autism

As the new academic year begins and students, staff, and faculty return from vacations, the Harvard Union of Clerical and Technical Workers continues its negotiations for a new contract with Harvard. Among the sticking points is the topic of healthcare. Many employees are concerned about an increase in premium and co-pay costs. But many of us also worry about gaps in healthcare coverage. One significant gap is coverage for Harvard employees and their families who are affected by autism, a neurological disorder which impairs cognitive development, communication, and social skills.

In 2010, Governor Deval L. Patrick ’78 signed House Bill 4935 (An Act Relative to Insurance Coverage for Autism Spectrum Disorder), which required private health insurance plans to provide coverage of medically necessary autism therapies. The bill went into effect on January 1, 2011. Before this bill, the lack of coverage for autism therapies had been an enormous financial burden for families. More importantly, it meant that each individual that went untreated was losing precious time in which to make developmental gains. Denial of coverage has long been recognized as discriminatory to the special needs population and their families. 32 states have enacted such legislation to combat insurance discrimination and meet the urgent needs of individuals and families profoundly affected by the challenges of living with autism.

However, at Harvard, the financial burden continues, along with parental grief that ones’ child is not getting the critical therapies needed to make progress in all areas of development. Due to an exemption in the state law, the families of Harvard employees continue to be excluded from coverage for much needed autism therapies. Under the Massachusetts law, self-funded plans, like Harvard's, are not required to provide medical coverage for autism treatments. Harvard employees and their families remain without access to the unlimited and intensive therapeutic and rehabilitative care (particularly Applied Behavioral Analysis) which has been deemed necessary by Harvard's very own medical researchers. Such services include training for parents and primary caregivers in order to help them manage their children's self-care skills, behavior, social skills, and communication. ABA is the most commonly prescribed therapy for individuals with autism, and, in addition to being endorsed by the medical community, it is recognized as the most effective treatment by the Surgeon General, the National Research Council, and the American Academy of Pediatrics.

A 2006 Harvard study cites the societal cost of not treating a child with autism as $3.2 million over that individual's lifetime. Another significant cost is the financial and emotional strain on parents and primary care givers. There is significant data on lost wages, employee use of sick time to care for dependents on the autism spectrum, and the development of stress and anxiety disorders by parents. Taken together, these factors amount to far more than the less than 1 percent premium increase that autism coverage is estimated to cost.

There are a great number of Harvard-affiliated doctors, scientists, and researchers who have contributed significantly to the study and treatment (for there is no cure) of autism. At least two members of Harvard's own medical faculty serve on the Scientific Advisory Board of Autism Speaks, which has become the “world’s leading autism science and advocacy organization.” Earlier this week, the National Institute of Health announced awards of $100 million in grants to support autism research. Among the recipients is Mustafa Sahin, M.D., Ph.D. of the Harvard Medical School. These individuals, along with the employees represented in the special needs parent support group here at Harvard, potentially comprise a strong base of support for an initiative to bring this important and just change to our insurance coverage.

There are many large U.S. companies and institutions that have self-insured medical plans like Harvard’s, yet recognize the urgency of treating autism. Employers including Tufts University, Princeton University, Ohio State University, University of Minnesota, University of Pennsylvania, Deloitte, the City of Cambridge, and Harvard Pilgrim Healthcare all offer their employees autism coverage. In June, the U.S. government also added autism coverage to its health plan for federal employees and, in the process, redefined ABA as a medical treatment, not a behavioral or educational service. Yet still, some Harvard employees, the author included, are compelled to supplement their Harvard medical plans by carrying costly secondary insurance policies.

As a research institution, Harvard is at the forefront of the scientific research for discovering the causes of autism and for identifying new treatments. As an employer and in practice, Harvard’s medical policy is deleterious to every individual with autism.

Harvard, too, should stand behind their scientific findings for the treatment of autism. It should join the list of forward thinking employers who recognize the need to provide equal access to medically necessary services to individuals on the autism spectrum. Harvard should not wait to be forced to do so by law.

Dawn M. Miller is a Technical Services Assistant at Harvard Library and the mother of a child with autism.