Voices of parent advocates within the systems of care model of service delivery

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Abstract

A growing body of research suggests that the “systems of care” approach to children's mental health can be effective in improving children's behavior and reducing stress on their families. What is less understood is how systems of care achieve these improvements. Through a series of focus groups, this study examined parent advocates, a key but understudied element of systems of care. Focus groups were conducted with parent advocates to examine how they themselves perceive their role within the systems of care model of service delivery. A research team identified several consistent themes from the focus group transcripts: unique role of parent advocates; similarities and differences between advocates and care managers; and, the value of having personal experience. For example, parent advocates saw themselves as navigators for families, helping them understand the system and access traditional and non-traditional services. Because of their own experiences with mental health services, parent advocates also believe they can communicate with family members in ways that professionals cannot. Results from this study can help strengthen the role of parent advocates by clarifying their contributions to service delivery. Future research should measure the extent to which parent advocates can produce the benefits identified in this study.

Introduction

Children's mental health shifted its focus toward a model aimed at strengthening families, drawing on their capacities, and letting parents lead with the introduction of the “systems of care” philosophy in the 1980's (Stroul & Friedman, 1988). This philosophy, or movement, has strengthened the role of families in their children's mental health care and it continues to dominate the field today. The philosophy is based on a core set of principles suggesting that services need to be family focused, parent led, and strengths-based. These principles are thought to lead to higher quality services, particularly for those at risk for removal from home and those engaged in multiple child-serving systems of care. Practitioners working within the systems of care model bring together, or wraparound, formal and informal supports to empower families in times of need. Focusing on family support has been a cornerstone of the systems of care movement. Family support takes many forms, including advocacy, education, support, respite, information and referral to needed services. Kutash and Rivera (1996) summarized definitions of family support, which included doing whatever it takes for families to just be families and keeping families together and helping them achieve balance. Parent advocates, a key form of family support, straddle the roles of paraprofessional and peer. They are a felt presence in family case conferences. This study presents the voices of parent advocates themselves regarding their roles in helping families.

Section snippets

Systems of care movement in Cuyahoga County, Ohio: Tapestry

The Cuyahoga County system of care initiative, entitled Tapestry, is one of the largest wraparound training and service delivery initiatives in the country. Tapestry was set up as a partnership between county child-serving systems of care and neighborhood provider organizations (Cuyahoga Tapestry System of Care, n.d.). Ten neighborhood collaboratives, which are made up of neighborhood provider agencies, utilize wraparound strategies (Burchard, Bruns, & Burchard, 2002) to work together with

Family support/parent advocacy

In recent years, parents and family members have increasingly been employed as service providers, supports, and advocates for families of children with emotional and behavioral disorders. Parents that have been in similar situations with their own children, sometimes referred to as “veteran parents” (Santelli, Turnbull, Marquis, & Lerner, 1995, p. 48), provide a particularly distinctive type of help navigating complex and fragmented systems of care, meaning they have a sense of how things are

Method

In defining the sample, we sought to include parent advocates with various levels of experience working within systems of care. The sample includes parents with over twenty years of experience in advocacy and parents that have worked as advocates for six weeks. Advocates were excluded if they had not been working within the children's mental health system of care for over one month. Names of potential participants were suggested by the parent lead for Tapestry. Sixteen parent advocates

Results

There were three main categories that emerged from the data: 1) Unique role of parent advocates; 2) Similarities and differences between advocates and care managers; and, 3) Value of personal experience. These categories and the relationships between them make up the results of this study.

Discussion

Parent advocates involved in Tapestry view their role as integral and evolving within the children's mental health system in Cleveland. Advocates perceive that their role includes translating content and process, navigating, empowering and being there for families and some of these roles can not be taken on by professionals no matter how much they want to help. Quotes from advocates themselves echo the descriptions of parent-to-parent support programs described earlier, with advocates

Limitations

There are limitations to the present study that are important to consider. First, with regard to generalizability, the data are limited, as our sample is from one Midwestern city. It is also important to keep in mind that all of the participants were females, which limits the understanding to women's views of the role of parent advocates within systems of care. As more men become parent advocates, studies can build on the present study to understand, more broadly, how male and female advocates

Implications

The present study has implications for practice, policy and research. With regard to practice, findings suggest that Tapestry System of Care would benefit from including parent advocates in all aspects of the planning process. Their voices represent a perspective that is extremely close to the families that are served in the children's mental health system. And, parents respect and trust the voice of advocates. Thus, their involvement at every level may lead to a more streamline system. Having

Acknowledgement

This study was funded by the Woodruff Foundation.

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