Description
Spring 2010 SODBP Newsletter
Local People, Local Situations, Local Solutions:
Driving Systems Change in Developmental and Behavioral Diagnosis in Ohio
John C. Duby, MD
In 2007, the Ohio legislature authorized funding for the Autism Diagnosis Education Pilot Project. The objectives for the project are to 1) heighten public awareness of early signs of autism; 2) improve access to developmental screening 3) improve coordination of medical diagnosis of developmental disorders, and 4) enhance access to evidence-based services for children with developmental disorders. The Ohio Department of Health awarded a grant to the Ohio Chapter of the AAP to design and implement the Project.
Mobilizing leadership
I am the Medical Director and have support from Dan Farkas, the project manager at Ohio AAP, and Marilyn Espe-Sherwindt, PhD, Early Intervention Consultant. Dan’s experience in journalism and mass communications and Marilyn’s strong relationships with the early intervention community across Ohio have been critical to the success of the project, offering credibility and opening doors to building new relationships. A 9 member Expert Panel from all pediatric centers across the state was formed to offer broad-based input into the design of every phase of the project. In addition, a 25 member broadly represented Advisory Board convened regularly. Frequent communication through meetings, conference calls, listservs, and our Web site, www.concernedaboutdeveloment.org has helped to establish a groundswell of support for our efforts.
Identifying community needs
We hosted 26 Focus Groups with nearly 300 people to identify strengths, gaps, and community needs related to developmental screening and diagnosis. This process permitted us to build relationships at a local level, identify opinion leaders within the community, and guided our design of the Project components.
We learned that no one was using standardized screening tools to assess all children in the communities. Families and professionals shared frustration over the lack of availability of local diagnostic services and noted delays of over 2 years from the time of initial concern to diagnosis. All agreed that contributing factors were parents’ readiness to see a problem, the doctor’s tendency to recommend waiting to see if the child would improve, and long waits to see a specialist. There was an interest in addressing all of these barriers within the communities.
Design and implementation
We designed 3 main Steps for Success: 1) a multifaceted Awareness Campaign; 2) an autism and developmental screening Learning Collaborative offered in collaboration with the Cincinnati Children’s Hospital Center for Health Care Quality, and; 3) a training and support network to develop Community-Based Diagnostic Partnerships focused on children with delays in communication and social development.
The Awareness Campaign has included development of our Web site, web advertising, TV and radio public service announcements, flyers, brochures, informational conference calls, newspaper articles, TV news spots, Hot Topics in Development webinars, Grand Rounds presentations, and town hall meetings to link with health care, early care, and education providers.
The Learning Collaborative, now called the Concerned About Development Learning Collaborative (CADLC), starts its third wave in early 2010, and now includes over 70 practice sites involving over 850 practitioners. Each practice has a team that has led efforts to implement the Ohio AAP developmental surveillance and screening protocol that builds on the national AAP recommendations (see Table). Improvement science principles are used to facilitate small, rapid changes in office flow to assure integration of screening, referral, and evaluation processes. Participants receive CME and Part 4 Maintenance of Certification Credit for the American Board of Pediatrics.
Practices that participated in the pilot phase and in the first wave have been highly successful in implementing screening with changes from baseline rates of 10% to rates of 70-80% after 8 months, with over 1/3 of practices hitting over 90%. Referrals to Ohio’s early intervention system have increased from these practices, also.
Community-Based Diagnostic Partnerships are in development in 5 communities across Ohio with plans to train and support an additional 27 teams beginning in April 2010. Early intervention and early childhood education evaluation teams are working with pediatric partners in their areas to enhance the breadth and depth of their evaluations to include a daily routines interview, and the Autism Diagnostic Observation Schedule (ADOS). The results of the evaluation are shared with the team’s pediatric partner, who interprets the results in the context of a thorough medical and developmental history, makes a diagnosis, and assures linkages with community services. The medical and developmental evaluation teams participate in a 2-day training to strengthen their evaluation and diagnostic skills, and to build the model for collaboration. The evaluation teams complete a 2-day ADOS training. Teams join monthly conference calls for ongoing support and problem solving. The goal is to have teams available across Ohio that offer a timely, local, standardized evaluation that will reduce the wait for diagnosis and eliminate the need for many families to travel long distances. If more children are diagnosed locally, this should also improve access to specialists in the state who will be called on to see the more challenging cases. Early results indicate universal satisfaction for families and the professional teams.
Future goals
Partners from across the state are working to design an ongoing Learning Network that will invite new participants and currently engaged practices to continue to refine their knowledge and skills in using improvement science principles to fully integrate developmental and social-emotional screening, as well as diagnosis and management of common emotional, developmental, and behavioral problems. Plans are being made to work closely with Ohio’s child psychiatrists, mental health providers, and primary care providers to promote appropriate use of psychotropic medications, and to achieve the Mental Health Competencies for Primary Care published by the AAP in July 2009. By working with local people in local situations, we can achieve local solutions to complex problems facing the children and families in Ohio.
TABLE:
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Ohio Chapter, American Academy of Pediatrics
Recommended Developmental Surveillance and Screening Protocol |
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Perform all elements of developmental surveillance at all health supervision visits. Include surveillance for caregiver functioning.
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Use a standardized developmental screening tool at the 9, 18, 30, and 48 month visits (ASQ:3 or PEDS)
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| Use an autism-specific screening tool at 24 months (M-CHAT and M-CHAT Follow-up Interview) |
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Use a standardized social-emotional screening tool at 12, 36, and 60 months, and annually thereafter (ASQ:SE and Pediatric Symptom Checklist, including Youth Self Report)
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John C. Duby, MD, FAAP
Professor of Pediatrics
Northeastern Ohio Universities Colleges of Medicine and Pharmacy
Director, Division of Developmental-Behavioral Pediatrics, Akron Children’s Hospital
Keywords:
Publication date: May 6, 2010
Revise date: May 6, 2010
TextID: 665
