Improving Care for Children with Autism
Background
Congress reauthorized the Combating Autism Act in 2011, which strengthened support for autism research and treatment agencies. The Health Resources and Services Administration (HRSA) spearheaded various efforts arising from passage of the original legislation in 2006, including the Autism Intervention Research Network on Physical Health (AIR-P) program. The Austism Treatment Network (ATN), a program supported by Autism Speaks, received the AIR-P grant. With the ATN working closely with the AIR-P, a major focus on research was brought to this area.
Through the AIR-P, NICHQ worked with the ATN to develop evidence-based guidelines. Collaborative efforts of NICHQ, the ATN, and ATN subspecialty committees have resulted in provisional guidelines on constipation, insomnia, and seizures. In the current collaborative project, NICHQ’s expertise has been specifically applied to pilot testing these guidelines at various ATN sites across the United States. Through the implementation of continuous improvement strategies, NICHQ is working to pave the way for widespread adoption and implementation across the ATN and ensure that quality improvement is applied to improving medical care for physical health issues and conditions related to ASD. One overarching goal of this project is that these guidelines and tools result in meaningful change and improved care for patients and families.
The following sites across the United States and Canada that are part of the ATN and AIR-P are part of The Collaborative to Improve Care for Children with Autism Spectrum Disorder. The first ten sites listed started in June 2011, and latter four sites started in September 2011.
- Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio
- Holland Bloorview Kids Rehab, Toronto, Canada
- Massachusetts General Hospital/Lurie Family Autism Center/LADDERS, Boston, MA
- Oregon Health & Science University, Portland, Oregon
- University of Arkansas for Medical Sciences, Little Rock, Arkansas
- University of Colorado at Denver/Children's Hospital Denver, Denver, Colorado
- University of Missouri at Columbia, Columbia, Missouri
- University of Pittsburgh, Pittsburgh, Pennsylvania
- University of Rochester, Rochester, New York
- Vanderbilt University, Nashville, Tennessee
- Children's Hospital Los Angeles (CHLA), Los Angeles, California
- Children's Hospital of Philadelphia (CHOP), Philadelphia, Pennsylvania
- Nationwide Children's Hospital , Columbus, Ohio
- University of Alberta/Glenrose Rehabilitation Hospital, Edmonton, Canada
The collaborative is dedicated to the expectation of consistent, high-level care across all ATN sites to all patients.
Project Aim, Measures, and Goals
The ATN is working with NICHQ to address delivery of care challenges experienced by families of children with autism. Children may see specialists who have limited experience with children with autism. They may be inadequately assessed for co-morbid conditions. Children may undergo multiple evaluations from specialists in different disciplines and sites. Some specialists may not provide follow up care and may not provide communication back to primary care providers, whose role may also be attenuated. Coordination is thus often limited. Many children with autism may not receive basic, comprehensive primary care, including routine preventive care. Early dental care is often overlooked.
By December 31, 2013, the collaborative will improve care for children and adolescents with Autism Spectrum Disorder and their families by implementing and refining the ATN Care Model, which is adapted from the Chronic Care Model.
This Learning Collaborative consists of six Learning Sessions separated by “Action Periods” during which teams conduct small tests of change. ATN teams will improve comprehensive, multidisciplinary care for children and youth with ASD within their local communities so that:
- Care coordination is improved through increased communication between primary care physicians and specialists;
- Families are engaged in, and satisfied with, their child’s care;
- Monitoring for insomnia, constipation, and neurological symptoms is improved through the use of clinical algorithms; and
- Children are monitored for other co-morbid conditions
Status
The 14 participating teams began working in June 2011 to improve care planning systems. The teams met for their first learning session on June 9-10, 2011 in Washington, DC. After that session, they began making small tests of change within their programs.
The teams met again, virtually, on November 29-30, 2011, for their second Learning Session. Over this two-day meeting, the teams shared tools and resources and received content to guide them as they began testing the algorithms. The teams are now in their second Action Period, where they continue to work on testing and implementing changes, as well as collecting monthly data based on these changes. The teams continue to share their successes and challenges with the other teams and collaborative faculty on monthly webinars.
To date, the primary focus has been testing and implementing algorithms for the care of insomnia, constipation, and neurological symptoms. Teams have been testing innovative ways to incorporate these algorithms more seamlessly into their standard practice of care. Another area of focus is care coordination; teams have developed care action plans or after visit summaries that outline main next steps and allow parents to share the diagnoses and recommendations with primary care providers, educators, and other relevant professionals.
For More Information
For more information about this project, please contact Shela Merchant at smerchant@nichq.org.
Funding
The project is funded by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital.
