Indiana LEND Awarded Grant to Study Needs and Service Utilization of Children Following Neurodevelopmental Diagnosis

July 17, 2017

Rebecca McNally Keehn, PhD, HSPP, Assistant Professor of Clinical Pediatrics at Indiana University School of Medicine, has been awarded a grant to study the needs and service utilization of children following neurodevelopmental diagnosis, as a quality improvement initiative of the Riley Child Development Center, the Indiana LEND's interdisciplinary evaluation clinic.

The Riley Child Development Center (RCDC) provides expert consultation and evaluation services for children with neurodevelopmental disabilities, including autism spectrum disorder and developmental and intellectual disability, and their families from Indiana and across the Midwest. Recent efforts to reduce the age of diagnosis in Indiana have been effective; however, how successful families are at implementing recommendations and accessing needed services for their child following diagnosis is not known. Research suggests that families of children with autism have more unmet needs and problems accessing services than children with other health care needs. Further, family burden and societal cost increase when children with neurodevelopmental disorders do not have access to needed interventions and care. Thus, there is a critical need to assess unmet needs and barriers to accessing services so that we may then develop and test models of support that address these problems. The aims of this project are three-fold: 1) determine the extent to which children's needs are met following neurodevelopmental diagnosis, and assess the relationship between unmet needs, child diagnosis, and family complexity and stress; 2) identify barriers to meeting children's neurodevelopmental needs and accessing services; and 3) develop a plan to provide follow-up services to families who may require more intensive supports to meet their children's neurodevelopmental needs. Over a period of 12 months, children (ages 2-10 years) with a neurodevelopmental diagnosis and their families will be recruited from the RCDC to participate in a study of needs and service utilization. RCDC clinicians will complete a measure of family complexity at time of diagnosis. Parents/caregivers will be asked to complete a survey comprised of measures examining unmet needs, service access, and family stress at two time points (Time 1: 1-14 days following diagnosis; Time 2: 4-6 months following diagnosis). At Time 2, parents/caregivers will also be asked to participate in an open-ended interview to generate feedback on quality of information and support provided during the evaluation process as well as the types of follow-up services that they perceive may be effective in supporting better access to care for their children. This project will allow for better understanding of the extent to which neurodevelopmental needs are met following RCDC diagnosis, what factors may be related to a family's ability to meet needs, and common barriers to accessing needed care. Based on these results as well as those of a family interview, we will identify ways in which supportive services may be added to those currently offered in the RCDC and opportunities to provide outreach support to local communities in which services and support may be lacking.