Autism (Work) on the Rise
A Message from Charlie Homer, NICHQ's President and CEOOctober 2011
This is an important time for those of us working to improve the care for children with Autism Spectrum Disorder (ASD). On September 30, President Obama signed legislation renewing the landmark Combating Autism Act for another three years, continuing the federal commitment for autism research, services and treatment at current levels. Meanwhile, NICHQ is engaged at the frontline of improvement work, running a collaborative improvement network as a major activity of the Autism Speaks’ Autism Treatment Network (ATN), through its role as the Autism Intervention Research Network on Physical Health (AIR-P).
These developments are critical at a time when the prevalence of autism is increasing. Roughly one percent of children in the US have autism—too many to be cared for by specialists alone. Yet these children experience an array of medical conditions that are poorly understood and difficult to assess and treat by those not deeply familiar with this population. These conditions include sleep problems, gastrointestinal symptoms, nutritional deficiencies, seizures, and other neurological and behavioral issues. And the communication problems seen in most children with ASD may also affect both the presentation of medical conditions and the child’s ability to express symptoms.
This is the context for our exciting initiative with the ATN, which began three years ago. The program, part of the activities of Autism Intervention Research on Physical Health, funded through its national coordinating center at Massachusetts General Hospital (MGH), is an initiative supported by the Combating Autism in America Act.
We are working with multidisciplinary specialty programs who have committed to work on improving their systems of care, not only within their organizations but with primary care practices in their communities. We are designing new models of integration and measures to track progress and using new, virtual methods to conduct our improvement activities.
We are excited to be partnering with the families and children with autism, with the Autism Treatment Centers, with Autism Speaks, and the coordinating center at MGH, and grateful for the support of the Maternal and Child Health Bureau and Congress for this program.
Since its founding, NICHQ has focused on improving care for children with chronic conditions or special health care needs, those children who are most dependent on health care, and for whom quality of care will likely have the greatest long-term impact on outcomes. We have tackled care for common conditions such as asthma and ADHD and for much less common conditions such as spina bifida and sickle cell disease.
In all cases, we have tried to create systems of care that can more reliably provide parents and children the results they seek, and do so equitably while being sensitive to the need to keep care affordable. Key elements of this work have been a focus on engaging families in care and building their own capabilities; assuring that care is coordinated across sites and levels; connecting the health care system to key community resources; applying the best evidence reliably to each child’s care; and helping practices manage their entire population of patients. We spoke out early about the central role of primary care and the comprehensiveness promised by the transformative medical home, while we increasingly realize the important role of specialists and the need for new models of integration—to provide evidence and comprehensive care, to acknowledge expertise, and preserve access.
Now we seek to leverage our knowledge and capabilities to address a wide range of health issues affecting children, autism among them. We invite you to stay tuned as the AIR-P/ATN program forges new ground, creating better ways to care for children with ASD, and integrating primary and specialty care and community resources to more effectively meet child and family needs.