Self-reported Needs of Youth and Families: Informing System Change and Advocacy Efforts

This study sought to explore caregiver-reported needs of youth and families receiving services within a System of Care (SOC). Data were collected to augment the in-depth, standardized interview protocols that are part of the National Evaluation of SOCs in order to identify gaps in the local delivery of services and supports to youth with severe emotional and/or behavioral disorders and their families. Primary caregivers of youth receiving services within the SOC were asked to report on the current need(s) of the youth and the current need(s) of the family. These open-ended responses were coded and examined for themes. The most common needs of the youth were Services and Life Management, while the most common needs of the family were Services and Financial. Focus groups conducted with youth and caregivers confirmed these themes. Findings from this study shed light on the diverse needs of these families, indicate that families believe they are not receiving adequate supports and services, underscore that youth have distinct views, and highlight that providing a way for the typically disenfranchised youth and families to express their perspective is central to the functioning of SOCs. Study findings were used by a local nonprofit organization to inform their advocacy efforts, and were incorporated into an enrollment process at a local mental health agency are part of a programmatic change pilot effort.