Contents lists available at ScienceDirect Children and Youth Services Review journal homepage: www.elsevier.com/locate/childyouth Discussion Nothing About Us Without Us: Authentic participation of service recipients in system development ☆ Joy S. Kaufman a, ⁎ , Alayna Schreier a , Susan Graham b , Tim Marshall c , Jeana Bracey d a Division of Prevention and Community Research, Yale University School of Medicine, United States b Family Engagement Consultant, United States c Connecticut Department of Children and Families, United States d Child Health and Development Institute of Connecticut, Inc., United States ARTICLE INFO Keywords: Family involvement Children's mental health systems of care Systems transformation ABSTRACT The involvement of consumers in the planning and development of health services has been encouraged and, in some cases, mandated. This involvement is viewed by many as a democratic or ethical requirement in that consumers have a right to influence services. Connecticut has been working toward the full implementation of a children's behavioral health system of care since 1997 but has lacked the mechanisms needed for family members to have their voices heard or to be full partners at decision-making tables. This paper is a case study that highlights work that has been done to 1) gather systematic feedback from families through the use of participatory research methods; 2) increase family access to data; and, 3) build the capacity of caregivers with the goal of increasing their involvement and leadership at all levels of the system of care. 1. Aim This paper is a case study that will 1) highlight the importance of family involvement in the development and sustainability of systems of care, and 2) describe the strategies to increase family participation at decision-making tables within the Connecticut mental health network of care. 2. Background 2.1. Systems of care For more than 25 years the Substance Abuse and Mental Health Services Administration (SAMHSA) has been funding jurisdictions to implement community-based children's behavioral health systems of care. Systems of care, which are coordinated networks of services and supports for children with serious emotional and behavioral problems and their families, were developed in order to improve access and quality of services for children and families through the provision of community-based, culturally competent, family-driven services (Cook & Kilmer, 2012; Stroul & Friedman, 1986). Services are multidisciplinary in nature and reflect the complex needs of many families that require the perspective from multiple service professionals (Cook & Kilmer, 2012). Systems of care grew from the recognition that services for children and youth with serious emotional and behavioral problems were often inaccessible, restricted and fragmented (Knitzer & Olson, 1982; Stroul & Friedman, 1986) resulting in large numbers of children with behavioral health needs receiving inadequate or no care (Knitzer & Olson, 1982). Research suggests that only 20–25% of youth with serious emotional or behavioral problems receive the care that they need (Kataoka, Zhang, & Wells, 2002). Systems of care do not have a pre- scribed set of services and supports but instead provide “a philosophy about the way in which services should be delivered to children and their families” (Stroul & Friedman, 1986, p. xxii) leaving decisions about the types and duration of services to the local communities (Cook & Kilmer, 2012). 2.2. Family involvement A core value of systems of care is that each component must be https://doi.org/10.1016/j.childyouth.2019.03.029 Received 18 October 2018; Received in revised form 13 March 2019; Accepted 14 March 2019 ☆ Author Note: The preparation of this paper was supported, in part, by a grant from the Center for Mental Health Services of the Substance Abuse and Mental Health Services Administration awarded to the Connecticut Department of Children and Families (SM61646) and by the second author's National Institute of Drug Abuse T32-funded postdoctoral training fellowship (T32DA019426-13). ⁎ Corresponding author at: Division of Prevention and Community Research, Yale University School of Medicine, 389 Whitney Avenue, New Haven, CT 06511, United States. E-mail address: joy.kaufman@yale.edu (J.S. Kaufman). Children and Youth Services Review 100 (2019) 422–427 Available online 15 March 2019 0190-7409/ © 2019 Published by Elsevier Ltd. T