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Autism Speaks Puts the Combating Autism Act to Work for our Families


Posted by Daniel Coury, MD, medical director of Autism Speaks Autism Treatment Network (AS-ATN) and a developmental-behavioral pediatrician with Nationwide Children’s Hospital, in Columbus, Ohio. Nationwide Children’s Hospital is one of 17 AS-ATN centers across North America.

Every spring, the major medical societies hold their annual conferences, and participants discuss the results of the latest research and innovations. I attend several of these meetings every year and am always pleased to share information with our community of families.

Today, I want to describe the progress we reported at this year’s Combating Autism Act Initiative (CAAI) meeting. The title of the conference says a lot: “Putting the Pieces Together: Improving Access, Quality and Integration through CAAI.”   

The Combating Autism Act, passed by Congress in 2006 and renewed in 2011, provides funds for conducting research, developing practice guidelines and sharing this vital information with professionals and families. Through the Health Resources and Services Administration, this funding supports the AS-ATN’s role as the Autism Intervention Research Network on Physical Health (AIR-P). Together, the AS-ATN and AIR-P form a productive collaboration that does much more than either could do separately.

Involving families in specialty care
At this year’s CAAI meeting, I was one of many healthcare providers from medical centers, state programs and private practice.

I participated in a panel on improving quality of care. Panelists described the progress being made in improving standards for managing sleep problems and constipation issues for individuals on the spectrum. We emphasized how our AS-ATN/AIR-P work has demonstrated that these medical issues can be treated successfully. The key: close contact with families combined with sensitive adjustment of treatment strategies.

More important than the technical details of medical management are the methods we’ve developed to connect with families to facilitate this close monitoring and ongoing treatment modification.

In some cases, we use traditional phone contact. In others, we stay in close contact by e-mail or text-messaging. We’re hoping to develop apps for smart phones and tablet PCs that will enhance this communication further. In these ways, we can promptly adjust treatment plans in response to a child’s symptoms.

I see this type of innovation as vital to increasing the availability of autism specialists across the country. In particular, we want to see our AS-ATN specialists become more available for consultation and collaboration with primary care providers in every community.

Improving access to care
Other work by the AS-ATN/AIR-P has focused on improving access to autism specialty care. Autism’s rising prevalence has overloaded our nation’s autism specialists. This, in turn, has produced long waiting times, missed diagnoses and under-treatment.

To increase our capacity to deliver care, our AS-ATN/AIR-P sites at Cincinnati’s Children’s Hospital Medical Center and Columbus’s Nationwide Children’s Hospital are using “quality improvement science.” These methods analyze factors such as the providers in the system, the demands for their services and the needs of our families. It also follows how patients and families move through the system and what occurs at each step.

This gives us a clearer understanding of the demands on our system. Importantly, it has also produced a helpful assessment of what we’re capable of doing with existing resources.

In response, we changed certain processes to improve efficiency and increase access to services. This not only helps children and families today, it helps ensure that that future improvements will have the maximum benefit for families.

In fact, at the CAAI conference we demonstrated that our two sites were able to dramatically reduce wait times and increase access to care without adding more healthcare providers.

As we share these techniques within and beyond the AS-ATN network, we can improve care for thousands of individuals with autism across the United States and Canada – including those who don’t live near one of our centers.

Everyone attending the conference left with new ideas to implement in their home communities and new contacts who will be able to provide assistance in the future.

Clearly, the Combating Autism Act is improving autism care today and on its way to transform care for tomorrow. We’re pleased that the AS-ATN/AIR-P is an active part of these exciting activities and promise to redouble our efforts on behalf of all our families.

Editor's note: The Combating Autism Act will expire in September 2014, ending federal research funding dedicated to autism unless Congress reauthorizes the law. Autism Speaks will be working with our champions in Congress on a reauthorization campaign. Learn more at Advocacy.


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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.