Child, Adolescent & Family

Executive Summary

Volume I: New Roles for Families in Systems of Care

Introduction

Since Knitzer’s 1982 wake up call to the mental health community, family members have gained knowledge, skills, and access to influence systems of care so our children with mental health needs receive better services and we get supports to raise them to be strong and healthy. We have found and developed our voice. We have become strong partners and assertive leaders in developing a better system of care for our children. We now serve as collaborators, advisors, providers, planners, administrators, evaluators, as well as advocates. Our work provides information and assistance to other families and professionals. We have begun to help one another coordinate the system of care and provide pre-service training to personnel who will be serving our children and families. The diversity and scope of our activities demonstrates the impact families have had on the systems of care emerging around the country.¹

¹ See Appendix A for a description of values and principles for the system of care.

New Roles for Families

In this paper, we define and describe two roles for families that are promising practices at the cutting edge of this whole new world.

The term "system of care facilitator" was chosen by our writing team to describe one of the most prevalent and rapidly evolving of the new roles for families in systems of care. This term reflects the key feature of the role — namely, that the family member employed in this position uses a variety of strategies to help enrolled families become familiar with their community’s system of care, learn how to effectively participate in it and, thereby, gain access to quality services that improve outcomes for their child and family.

In short, they facilitate development of a positive working relationship between families and the system of care. The term "family as faculty" is used to describe the role family members co-teaching with university faculty who are preparing the workforce for systems of care. This is a very promising practice, but not very widespread. We also include a description of a more traditional involvement of family members in university training programs — that of guest lecturer.

Data Collection

Information about the history, development, and impact of these roles was collected through a review of the literature, telephone conferences, and on-site interviews with families and staff of several projects funded by the Center for Mental Health Services under its Comprehensive Community Mental Health Services for Children and Their Families program. We also visited university campuses and meet with faculty associated with these grantees and their students.

Lessons Learned

System of Care Facilitator
It is clear that the practice of employing of family members in a system of care facilitator role achieves better outcomes for all involved. Our study of the Illinois and Rhode Island projects points out several features that are essential to achieving this success and, therefore, are the lessons to be applied by any community wishing to replicate this approach. These include:

Direct care staff and supervisors must have a genuine willingness to work with family members as equals in spite of the fact that they may not have the same level of formal education and training.
System change planners and promoters of systems of care can not afford to underestimate the importance of attitudes or the effort it takes to make this paradigm shift.
A job description with specific responsibilities and expectations has to be invented. The job description must be revisited and revised frequently, as the role matures to fit the context of each unique community setting.
Persons in this position require support from their local family-run organization, as well as the day-to-day support within the agencies where they are working.
Agency policies and procedures must be flexible to make it easy for family members working in this role to get into the community at any time of day or night and have funds at their disposal to meet immediate short term needs for family support.
Compensation must be fair and reflect the level of responsibility expected, rather than the degree of formal education attained. In some cases, hiring family members without college degrees may necessitate redesigning personnel policies, renegotiating labor contracts, or changing state requirements for licensure or accreditation.
On-going training and supervision are necessary for system of care facilitators to develop their role, expand their professional horizons, and transform their personal experience into effective strategies for improving the way services and supports are provided to children with mental health needs and the families raising them. Consideration should be given to a career ladder with opportunities to gain certification, licensure, or a college degree.

Family As Faculty

In order for the values and principles of the system of care to begin to take hold in communities, it is necessary for all involved to become a continuous learning community. Engaging family members as partners with university faculty is one practice that holds great promise for achieving this goal. Strong partnerships between family-run organizations and university faculty greatly facilitate the development and implementation of the family as faculty role. In addition, because this is a radical departure from the way universities typically conduct their business, strong state level leadership helps to leverage resources to support the initial program development.

The experiences of East Carolina University and the University of Maine (Orono and Machais campuses) offer the following lessons for others wishing to engage family as faculty. System of care philosophy needs to be taught in colleges and universities.

The teaching of the system of care needs to be done by both faculty and the people who will be using the system — parents, youth, and other family members.
When family members serve as faculty, there is an opportunity to model partnerships and mutual respect to students before they enter the service delivery work force.
Students exposed to family as faculty enter the workforce already knowing how to communicate with families, be respectful when visiting families in their homes, work with family advocates, interact with family-run organizations, and attend family support groups, when they are invited.
Students completing these programs start their professional work prepared and determined to positively engage with parents. The families they work with are feeling less blamed and more valued and increase their own level of involvement in the decision making about their child and the selection and provision of services and supports.

The role of family members serving as faculty is enhancing the image of families who are raising children with mental health needs. Family members who serve as faculty feel validated by the experience and are developing their communication and advocacy skills to a high level. Because of the support of their university based partners and the training they receive from family-run organizations, families have achieved a high level of public recognition for their expertise and credibility for the stories they tell.

Looking Ahead

The two roles described in this paper offer great promise in lifting the burden and eliminating these barriers to full family involvement. The role of family as faculty clearly has begun to influence the way the system of care functions by preparing the work force in an entirely new way — one that is family-friendly and collaborative and embodies the values and principles of the system of care.

Building and sustaining effective systems of care for children with mental health needs and their families depends, in large part, on the individual people who work in or with the myriad components of such systems. Family members who work as system of care facilitators and family faculty are stimulating behavioral change in their co-workers and development of family-friendly policies and procedures within the provider agencies in their communities. They are also changing themselves, developing new skills and confidence in their ability lead and teach others.

The challenge is for full family involvement in systems of care to become the rule rather than the exception. Change does not occur overnight, but we hope that this initial description of families as system of care facilitators and faculty training the workforce for systems of care will stimulate others to explore and develop these (and other) roles further and that, consequently, greater number of children with mental health needs and their families will reap the benefits of systems of care.