The Autism Services, Education, Research and Training Collaborative
The Pennsylvania Department of Public Welfare, Bureau of Autism Services established three regional collaboratives in response to the Pennsylvania Autism Task Force to address the needs of Pennsylvanians with autism across the Commonwealth (Doehring, 2013). The Eastern ASERT Collaborative was based at the Center for Autism Research, with a two-year budget of $1.8 million (other collaboratives were based at PennState - Hershey (Central Pennsylvania), and the University of Pittsburgh (Western Pennsylvania). During my tenure as Director of the Eastern ASERT Collaborative, I oversaw funding and support to projects undertaken by various regional partners (University of Pennsylvania, Children's Hospital of Philadelphia, Lehigh University, Drexel University, Friends Hospital, and Devereux Services), and addressing a broad range of needs (diagnosis, behavior support, social skills training, etc.). I led the Early Screening and Diagnosis Project (described below).
Early Screening and Diagnosis Project
Families of young children seeking diagnostic evaluations by specialized hospital-based teams may face a waiting list of a year or more, while community-based practitioners may be reluctant to offer diagnostic services to a population they perceive as very complex. In collaboration with Dr. Susan Levey, I designed ESD to improve access to ASD services for young children from traditionally under-served populations across eastern Pennsylvania, as part of the state-funded ASERT Center based at the Center for Autism Research (Doehring, 2013).
The project hinged on the triage of more complex cases to more specialized teams using a more intensive protocol, while less complex cases were referred to less specialized teams using a more basic diagnostic protocol. I led the design of the two-step evaluation model (e.g., including the specific criteria for distinguishing those requiring more specialized assessment), which had been first broadly described in the recommendations of the Pennsylvania Expert Diagnostic WorkGroup. I also developed the plan for staffing support, and the implementation plan for ESD, and wrote all the relevant sections of the grant application.
I also developed all of the training and supporting materials for project, and delivered all of the training. The training included a 60-90 minute overview of ASD for everyone involved in the referral process, and then a 8-10 hour training for those actually involved in ASD diagnosis. The latter included overview of core features of ASD, characteristics of assessment instruments, how to establish convergence of information across assessments, and a detailed review of the triage process. Subsequent, smaller workgroups provided coaching in the clinical use of the assessment instruments, and information on differentiating ASD from co-occurring conditions. All trainings also included clinical templates and annotated bibliographies.
This training was provided to professionals in 5 different sites across eastern Pennsylvania, based in hospitals, and community rehabilitation and early intervention agencies. The model for triaging information gathered at different stages of assessment patients was central to a parallel initiative I helped to launch at CHOP, the Early Autism Screening and Identification Clinic (Ott, Levy, and Doehring, 2010). EASI increased the number of very young children suspected of ASD seen at the Regional Autism Center by significantly expanding the role of Pediatric Primary Care Nurse Practitioners (PNPs) in diagnosis.
Use large, well-designed surveys to identify critical gaps in access to basic care, and to help to set benchmarks for new programs.
One of the ASERT projects that I was excited to have contributed to was a statewide needs assessment of individuals and families living with autism (Lawer, Mandell, & Doehring, 2010). The assessment was especially compelling because everyone who was receiving publicly funded education or health services in Pennsylvania under an autism label had been invited to complete the survey (and more than 3500 did!). The needs assessment identified significant gaps in basic care and key life outcomes related to education, employment, and physical /behavioral health, as reported by families and individuals living with with ASD across the Commonwealth. Together with the recently published Pennsylvania Autism Census, these provided data specific to Pennsylvania. The Census also reported administrative prevalence broken down by county. While these kinds of surveys may not always support highly detailed comparisons, they can sometimes yield useful overall estimates. Yet I have also not found examples of autism legislation that have drawn on these kind of data (Doehring & Rozell, 2014).
1) Utilize survey data to drive home the need for improvements: Dramatic gaps in basic care are compelling for program developers and policymakers. For my Act Early project, I used the finding that, even in the most recent cohort, less than one-half of pre-elementary school children were reported by their caregivers to have been referred on by their diagnostician for follow-up .
2) Utilize survey data to propose actual benchmarks and projections: Sometimes an estimate of the extent of a hypothesized need is important to generating projections about the resources needed. For when I left CAR to launch an inpatient treatment program, I based broad projections regarding the need on the finding that more than 1 in 10 adolescents was brought each year to an emergency room in behavioral crisis.