By Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D.
This week’s meeting of the Interagency Autism Coordinating Committee (IACC) took an unprecedented direction as members argued that it’s time for the committee to provide greater relevance, value and near-term impact on the lives of people in the autism community. Unlike previous years, when the discussion concentrated primarily on science, committee members embraced the idea that IACC’s scope and role should extend beyond developing a strategic plan for research. Members supported a call to make immediate recommendations on a wide range of urgent issues. In particular, members prioritized issues of healthcare disparities, service needs and access to care.
This is a time of urgency for the autism community. Autism Speaks is particularly concerned about how federal healthcare reform will affect insurance coverage for autism services. (More on our efforts here.) Currently, only around half of all states plan to include ABA/behavioral health treatments for autism in their health insurance marketplaces. This is disheartening because the Affordable Care Act requires new health insurance plans to cover screening for developmental delays and disabilities by 9 months and autism-specific screenings at 18 months and 24 months. To diagnose a child with autism and then not provide access to treatment would be unethical.
The IACC wrestled with the best way to expedite recommendations to policy makers. In the end, members decided to draft, review and approve a letter without delay. IACC member David Mandell stated that this was a “unique moment in history” when the IACC could have a significant impact. IACC Chair and Director of the National Institute of Mental Health Tom Insel agreed, remarking that focusing the IACC's attention solely on basic research was akin to “responding to a home that was on fire by analyzing the chemistry of the paint.”
Research has demonstrated the great disparities in access to health care. Within the autism community, children from ethnic minority backgrounds tend to be diagnosed later. On average, they also require more visits to a doctor before receiving their diagnosis. Furthermore, research shows that parents of children with autism have more difficulty accessing services, referrals and coordinated care – and have to pay more out-of-pocket for services in comparison to parents of children with other chronic healthcare conditions. For good reason, some members of the committee called this a matter of “social justice.”
Throughout the meeting, I saw a growing groundswell of support for a stronger focus on issues of immediate relevance to families. As this consensus emerged, a number of IACC members urged us not to lose sight of the remarkable scientific progress taking place. Scientific progress is essential for developing more effective methods of diagnosis, prevention and treatment. Some noted the paucity of evidence-based treatments for adolescents and adults. We need such evidence as the foundation on which we can build future advocacy efforts for improving access and coverage for services and supports through the lifespan of all those with autism.
Editor’s note: Please also see Autism Speaks’ news report on the meeting’s agenda items, here.