The New York State Early Intervention Program (NYSEIP), administered by the New York State Department of Health through the Bureau of Early Intervention, in consultation with researchers from the State University of New York-Buffalo, State University of New York-Binghamton, and the University of Miami, have collaborated to execute a multi-phase study to model a cost-effective approach to evaluating the impact of participation in early intervention (EI) systems on children with autism spectrum disorder (ASD) and their families.
The desired outcome of the study, Evaluating the Impact of Early Intervention Services on Young Children with Autism Spectrum Disorders and Their Families: A State Systems Approach, funded by a grant (R40 MC 20611) through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program, is to develop a model that can be used in New York and nationally, as a tool for EI program evaluation and quality improvement purposes specific to ASD.
As part of their larger objective, the Grant Team worked closely with CSI to use group concept mapping as a tool for constructing ASD specific outcomes for inclusion in two measurement impact scales. This objective comprised the first of five specific aims of the larger study, through 1) the identification and organization of family and child outcomes specific to children with ASD and their families, and 2) determining the level of agreement among participants on the importance of each outcome, and the likelihood that EIP services will have a positive impact on each outcome. In order to achieve this aim, CSI and the Grant Team engaged a large number of stakeholders, including national experts, service providers, program administrators and parents and family members of toddlers with ASD in an integrated, iterative process of developing and refining a robust set of child and family outcomes specific to ASD.
The results of the group concept mapping project suggested that parents and professionals conceptualize outcomes specific to children with ASD and their families differently. In order to maximize the interpretative value of the data, the team computed two sets of concept maps based on the professional and parent/family member sort data.
From the professionals’ sort data, outcomes were categorized in eleven higher-order themes or clusters:
From the parent and family member sort data, outcomes were categorized in seven higher-order themes or clusters:
From an interpretative standpoint, the difference in the number of clusters between the two maps suggests that parents and family members of toddlers with ASD consider family and child specific outcomes in fewer, broader categories, whereas professionals involved in ASD services make a greater number conceptual distinctions among the same set of outcomes. Subsequent study aims will determine the validity of the measurement scales, as they will be modified to include the ASD specific outcomes generated through concept mapping.