Am J Community Psychol (2012) 49:546–555 DOI 10.1007/s10464-011-9473-7
ORIGINAL PAPER
Changing the System by Changing the Workforce: Employing Consumers to Increase Access, Cultural Diversity, and Engagement Melodie Wenz-Gross • Toni DuBrino Irsfeld • Tammy Twomey • Ana Perez Judith Thompson • Martha Wally • Barbara Colleton • Christine Kroell • Steven K. McKeown • Peter Metz
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Published online: 27 September 2011 Ó Society for Community Research and Action 2011
Abstract Services to families have traditionally been delivered in a medical model. This presents challenges including workforce shortages, lack of cultural diversity, lack of training in strength-based work, and difficulty in successfully engaging and retaining families in the therapy process. The system of care (SOC) effort has worked to establish formal roles for caregivers in SOC to improve services. This paper provides an example of one community’s efforts to change the SOC by expanding the roles available to caregivers in creating systems change. It describes the model developed by Communities of Care (CoC), a SOC in Central Massachusetts, and its evolution over a 10 year period. First person accounts by system partners, caregivers hired into professional roles as well as a family receiving services, demonstrate how hiring caregivers at all levels can change systems and change lives, M. Wenz-Gross T. D. Irsfeld T. Twomey A. Perez P. Metz Department of Psychiatry, University of Massachusetts Medical School, Worcester, MA, USA M. Wenz-Gross (&) Communities of Care, 16 Shaffner Street, Worcester, MA 01605, USA e-mail:
[email protected] J. Thompson M. Wally Counseling, Psychology and Community Outreach Services, Worcester Public Schools, Worcester, MA, USA B. Colleton Fitchburg, MA, USA C. Kroell Community HealthLink, Inc., Worcester, MA, USA S. K. McKeown Worcester District Court, Worcester, MA, USA
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not only for those being served but for the caregiver/professionals doing the work. It also demonstrates, however, that change at the system level is incremental, takes time, and can be fleeting unless an ongoing effort is made to support and sustain those changes. Keywords System of care Serious emotional disturbance Work force development Employing consumers
Introduction Service delivery to families has traditionally been delivered in a medical model relying heavily on professional knowledge and treatment by doctoral or masters level clinicians. This model has the advantage of having trained licensed clinicians working with families, but it also presents challenges including workforce shortages, lack of cultural diversity, lack of training in system of care principles and strength-based work, and difficulty in successfully engaging and retaining families in the therapy process (Dodge and Huang 2008; Mitrani et al. 2003). In order to increase access for diverse families, enhance the work being done by clinicians and address some of these challenges, there must be recognition and an incorporation of experiential knowledge that only caregivers can provide (DuBrino and Irsfeld 2009). Experiential knowledge is the lived experience that families have; for instance, how a youth’s serious emotional disturbances (SED) manifests itself within the home and community, what vision the family has for the youth, and what the unique strengths are of the youth and family. Including experiential knowledge into the work done in the field is essential to enhance cultural understanding, family
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engagement, and individualized care for youth and their families. The system of care (SOC) effort has worked to increase family voice, involvement, and collaboration with professionals in improving children’s mental health care. One area that has seen particular growth is in the establishment of formal roles for caregivers (term used here to be inclusive of parents, family members or others raising a child with SED), including: being hired as family partners to assist families in the wraparound process (which is a team based, collaborative process to implement individualized care plans; see Walker et al. 2008 for a description); serving as co-trainers (with professionals) to inculcate family perspectives and sensitivity in the training of professionals providing services to families; and serving on state and local advisory boards to provide input into policy decisions (see Osher et al. 1998; Simpson et al. 1998). While a good deal of progress has been made in terms of caregiver involvement in SOCs, caregiver roles are still limited (Huang et al. 2005) and represent a relatively untapped resource (Dodge and Huang 2008). This paper provides an example of one community’s efforts to change the SOC for youth with SED and their families, by expanding the roles available to caregivers in creating systems change. It describes the model developed by Communities of Care (CoC), a SOC in Central Massachusetts, and its evolution over a 10 year period. It uses first person accounts to demonstrate how hiring caregivers at all levels can change systems and change lives, not only for those being served but for the caregiver/professionals doing the work. It also demonstrates, however, that change at the system level is incremental, takes time, and can be fleeting unless an ongoing effort is made to support and sustain those changes.
The Communities of Care Model The CoC model has at its core a parent-provider partnership. Professional and experiential knowledge are seen as equal to one another, neither is greater than the other, and both are necessary to meet the needs of families. Caregivers are actively recruited and hired at multiple levels within the organization: direct service, middle and senior management, as well as data collection and evaluation to ensure that experiential knowledge has an equal part in service delivery, program development, and managing and running the organization. The model is based on the assumption that family perspective and voice within all of these positions are necessary for improving CoC services, increasing engagement of culturally diverse families, influencing the ways in which systems work with the families they serve, and advocating for policy changes.
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History Worcester Communities of Care CoC received its first SOC grant award, Worcester Communities of Care (WCC), in 1999. WCC developed a parent-provider model of service delivery that utilized a wraparound process staffed by care coordinators (master’s level clinicians) and family partners (caregivers of youth with SED, who reflected the diversity of our community). The family partners enhanced our ability to engage diverse families with youth with SED at risk of out-of-home placement. In 2004, the state adopted this model as a model of care for five communities in Massachusetts (called Coordinated Family Focused Care), and in 2008, the model was expanded state-wide through a class action law suit. The Training and Learning Collaborative (TLC) Based on the success that staff from WCC had with families that providers had deemed ‘‘unworkable’’ because of previously failed efforts to engage them, WCC began receiving requests for training in SOC. As a result of these requests, the TLC was created based on a parent-provider model. Trainings were led by a doctoral level licensed psychologist and a caregiver of youth with SED (who was also a masters level counselor), combining the clinical and family perspectives (professional and experiential knowledge). The TLC worked with a wide array of agencies, including public schools, residential treatment programs, provider agencies, State child-serving agencies, and child psychiatrists to enhance their way of engaging and working with families. Training was provided to hundreds of professionals on how to implement family-driven, youth-guided, strength-based work, how to engage families, how to talk about problems, and how to facilitate collaborative team meetings. Many of these agencies continue to use the CoC model of wraparound support 10 years later. Further, the system level relationships developed through these trainings provided a foundation for further collaboration, particularly in the public schools (see Thompson and Wally account below), and led to the planning of the next CoC effort. Communities of Care’s Second Grant Building on the success of WCC, Central Massachusetts Communities of Care (CMCC) was established through a second SAMHSA SOC cooperative agreement in October 2005. CMCC was developed in an 18-month collaborative planning process with multiple stakeholders, including State agencies, public schools, probation, provider agencies, parents and parent organizations and staff from WCC.
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We believe the ability of this diverse group to work together, with families having an equal voice in the process was, in part, the result of the work and system level changes achieved through the parent-provider partnerships of WCC and the TLC. A critical aspect of this planning process, was that agencies and family members were able to articulate their needs, desired outcomes, and strategies, and work together to conceptualize a project that they could support. Through this planning process, the group identified the goal for CMCC: to decrease or prevent juvenile justice involvement for youth with SED. Family input was key to the design of CMCC’s strategy in meeting this goal. Families said that the wraparound planning process was helpful, but they felt that they needed something more after they graduated from services. They needed a place where they could connect with other families and their community, that was designed to be family friendly, non-stigmatizing, culturally competent, and that would serve both as a ‘‘front porch,’’ in providing greater access to needed services and supports (Callejas et al. 2009), and a ‘‘back yard,’’ where they could come back, or stay connected beyond the wraparound process. They also did not want their place to ‘‘feel like a clinic,’’ but a ‘‘warm place where they felt welcomed.’’ As a result, CMCC’s model was designed around the concept of a Youth and Family Center (YFC). In addition to intensive wraparound, the YFC would offer skill building and supportive interventions as a way to promote positive development and prevent further problems. Finally, to improve services at the system level, CMCC was to provide caregiver liaison services to the courts, work with the schools, and train area providers to increase evidence-based practice related to trauma. The planning process itself with all the key stakeholders at the table was critical because it created needed stakeholder buy-in at the system level, particularly from the Department of Youth Services and the Chief Probation Officer. This created the context and needed support for involving caregivers as liaisons in the courts (see first person account Stephen McKeown, of one of the probation officers who worked with these liaisons). While further follow up meetings after funding were necessary (particularly with the Judges), the stage was set for the court system to allow CoC to test this parent-provider model of service delivery in their setting.
Expanding the Role of Caregivers Because our population of focus was youth involved in the juvenile justice system, the staffing pattern of the YFC was given careful consideration. Families referred directly by
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the court through probation and the juvenile Judge often have struggled with systems, and are sometimes reluctant to try new services. The planning team felt that being able to engage youth and families directly in the courthouse would be critical to families’ willingness to participate in the wraparound process, and that this would best be achieved through initial contact with a caregiver liaison. However, because of the mental health needs of these youths and safety concerns of the courts, there also needed to be strong clinical oversight and ties to emergency services if needed. The result was an expanded role for caregivers, supported by regular supervision by the Director of the YFC who is a licensed clinician. Caregivers are hired and trained to be Care Partners providing intensive care coordination to families, and serving as liaisons to the courts. Thus, where the WCC model had a clinician providing the intensive care coordination and the Family Partner (a caregiver) supporting and advocating for the family, the new model has caregivers themselves providing the care coordination with supervision and oversight by a licensed clinician (YFC Director). The Assistant Director is a caregiver who is a member of the local community and provides YFC management, as well as community outreach and connection to other service systems. This joint leadership (with the clinical director) helps to maintain the perspective of the family voice in partnership with the clinical perspective, within the YFC and in interactions with other agencies in the community. In addition, the CMCC project management team includes caregivers in key roles who provide leadership to interface with the University of Massachusetts Medical School (UMMS, under which the grant is implemented), as well as state and local agencies and legislators. For instance, the Project Director (an LCSW) along with the Director of Family Involvement and Training (a caregiver) worked with key personnel in Human Resources to influence hiring policies. The Medical Director (a psychiatrist) and the Director of Family Involvement and Training also worked with the Medical School to improve training for psychiatrists. In particular, they involved parents, youth, as well as ‘‘system partners’’ from education, child welfare, and juvenile justice directly in the training of residents in child and adolescent psychiatry, creating sustained system change at UMMS. The residents have found it very helpful to hear directly from parents and youth regarding both positive and negative experiences they have had with child psychiatrists and mental health care more broadly. These trainings have provided the residents with an opportunity to experience directly how parents and youth can be sources of important information and expertise and have been well received. This is now a standard part of the training curriculum for the UMMS child and adolescent psychiatry residents. Details of this option have been presented at
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the national meeting for residency training directors in psychiatry. Finally, because data have been important in changing policy in Massachusetts, caregivers were also hired as data collectors to increase family engagement in the SOC National Evaluation. The National Evaluation follows youth and families longitudinally with extensive interviews conducted every 6 months for up to 3 years (regardless of whether they continue to be involved in services). These data collectors have been very successful in enrolling and retaining families in the National Evaluation (while data collection is ongoing, our current retention rates are 96, 86, 80, 75, 71, and 70% for the 6–36 month follow up time points, respectively, with 45% of the families lost to follow up due to moves out of the area). Below are three first-person accounts that describe how this model has benefited two of our systems partners (the courts and the schools) and a family who came to CMCC through the court. These first person accounts are followed by two other accounts that describe the work being done by caregivers hired into direct service and managerial roles. Finally, our last personal account, written by one of our data collectors, describes some of the challenges as well as the personal benefits of being hired into a caregiver/professional role. Summaries of lessons learned follow the first person accounts.
Benefits to System Partners Judith Thompson and Martha Wally, Worcester Public Schools (WPS) Since many students with SED are served under the special education system, providing them appropriate instructional and related services in school requires very careful adherence to a set of federal and state regulations that can create an adversarial context for working with families. Our initial interactions with CoC were through the general education division of school counselors/social workers and school psychologists who were able to recognize the potential benefits of working more closely as partners with families and who contacted the TLC for technical assistance. Using the parent-provider approach to training, CoC trained school personnel in strength based work and the wraparound process. In the summer of 2001 WPS instituted a wraparound process with about 35 of its high risk students. The process and positive results were documented and ongoing coaching was provided by CoC trainers who were caregivers themselves. Then, in recognition of the real costs to the school system (attending meetings, training, communications), CoC funded roughly one full time equivalent of staff time. This training and financial support
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resulted in increased parent meetings and greater collaboration with families for a number of years. However, sustaining system change is not possible without continued leadership and financial support. There has been turnover in both administration and trained staff, shifting priorities and budget cuts. We are hopeful that the personnel who were trained continue to work with families in a strength-based approach, but since they have left, the system continues to struggle with the challenges of working as partners with families within the SPED context. System change can happen, but sustaining that change requires ongoing support. Stephen McKeown, Worcester County Juvenile Court When we began working with the YFC after the grant was funded, the critical link to the service was the availability of the staff person to sit in on the first step of the court process. The ‘‘Court Liaison’’ was there at the court when the youth first met with the probation officer (PO), and remained with the case if the case needed to go before the Judge. They were there to talk to families and to provide support to the court in accessing needed services. This person came 2 days per week, and if needed on other days. This was critical to engagement and follow through for the family and provided a needed resource for the court. A unique aspect of the YFC is its staffing. The Court Liaisons were themselves caregivers of youths who had been through similar experiences as the youth and families coming through our court. Families are looking for guidance and empathy. The YFC staff had a non-threatening position with the family that could build a trusting relationship that is essential for families to invest in services. The ability of the court to have direct and immediate access to a staff member who could show compassion and personal experience helped guide the PO and family toward a course of action. Further, the YFC offered a wide array of services, including home-based services, wraparound, support and skill building groups in a non-stigmatizing community center. Trust in the liaison and the process grew as we were able to see results, with these youths staying out of trouble and cases being closed. Diverting families from a long and potentially intrusive court involvement, with cost saving through less legal expense, fewer out of home placements, and less state agency involvement just made sense. Unfortunately, funding for the YFC in our region ended in 2009. Although I believe the way in which we work with youths and their families reflects a greater understanding of the family perspective, gained through our contact with YFC liaisons, we no longer have that parent connection in the court or the YFC services for immediate referral which has been a real loss.
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Lessons Learned What the above two accounts clearly show is the importance of continued financial, structural and leadership support for system level changes to be sustained. Without that support, or without mandated policies (as is the case with the class action lawsuit that has mandated wraparound service delivery in Massachusetts), change remains at the individual level. When those individuals leave, funding ends and/or priorities change, so do practices. The schools and courts allowed caregivers to play a role in their systems largely due to the relationships that were built through the TLC and the participatory planning process, supported by SOC grant funding. The systems changes occurred when those on the ground level saw the benefits of the parentprovider model of service delivery first hand. However, with leadership and staff turnover and without funded support, change was hard to sustain. Thus, finding a way to fund caregiver positions directly within systems is needed.
Benefits to the Family Receiving Services Barbara Colleton, Parent I am the mother of a 17 year old son whose problems started when he was 2 years old. Everyone told me it was normal, but I knew something was wrong. In 2nd-grade, he was diagnosed with ADHD and put on various medications. Nothing helped and he just gained weight. By the time he was in 8th-grade he was getting into trouble and being bullied because of his weight. One day he came to me and said he had had enough and he was going to fight back. He did and got suspended. The school filed a Child in Need of Services (CHINS), and I kept getting phone calls from his teacher, and then he got expelled. Soon, he was hospitalized, and the day he got out of the hospital, we had to appear in court. The Judge told us to talk to the Probation Officer, who said he had someone I needed to talk to and that he was going to recommend having my son removed from the house. When the woman came in, I said, ‘‘You are not going to take my child.’’ I did not want to have anything to do with her and I thought I did not want to hear anything she had to say. But the first thing she said is, ‘‘I am a parent like you, I have a child who has problems like your child, I have been through the court like you have.’’ Then she told me about the YFC and said, ‘‘Come in, check us out.’’ So I went and it was a nice atmosphere. Well, we have been going for 4 years now and my son was not removed. We received care coordination which both helped my son and strengthened our family. My son stayed out of trouble, and our Care Partner went with us to his
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court hearing to let the Judge know of his progress. All of his charges were dropped. He was still expelled from school, but the YFC arranged to have his tutoring meetings held at the Center, and he participated right afterwards in the youth activities that they offered. He went to everything and eventually started to participate on Youth Boards and was part of decision making. They also made it possible for him to go to a summer ‘‘Fit’’ camp and he lost 60 lbs over the summer. He is 17 and still participating. As for me, before going there, I had no self-esteem. I was not outgoing; I walked with my head down, always ashamed. I felt like my son’s problems were my fault. The services the YFC offered were ‘‘no shame, no blame.’’ I participated in support groups and took the ‘‘Parenting Journey,’’ a parenting class they offered. It was the best thing I ever did; it was very powerful and helped me tremendously. I also joined a Leadership program through the Parent Organization that was connected to the Center. Eventually, I started a craft group, and participated in a dance group, things I never would have had the courage to do before. What were the most important things for our family? First, having that initial connection with someone who had been there, who knew what I was going through, allowed me to be open to the services they had to offer, and gave me hope. The wraparound process provided us with clear, obtainable goals and a belief that we had the strength and resources to reach those goals. The many activities and groups they offered provided my son and me with a connection to others, with a feeling of support, that we were not just a family with problems, but that we had strengths and something to offer. Finally, the people at the YFC never acted like they were better than you. It is like a home there. People trying to help families like mine need to get to know the people they are trying to help—treat them like they are your family member, not a client. Let them know you are there for them. Big things can happen. Lessons Learned The value of hiring caregivers in direct care roles (with supervision) is that they can truly connect with families and relate to their struggles in ways that clinicians may not. Families are often isolated, disempowered and fearful of service systems. Without that initial connection, families may not engage. Offering supportive groups along with care coordination provides a sense of community and decreases shame. Further, providing opportunities for leadership and decision making regarding services offered can empower them and their youths, substantially changing their vision of themselves and their family.
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Caregiver/Professional Roles
Lessons Learned
Ana Perez, Care Partner
Latino parents face many barriers to getting the help they need, including a shortage of providers who speak their language and understand their culture, a reluctance to seek help outside of the family and a lack of knowledge of what is available (National Council of La Raza 2005). Latino children are almost three times less likely to have their mental health needs met than white or African American children (Kataoka et al. 2002). In central MA, Hispanics make up 9.4% of the population (U.S. Census 2010) but 29% of those in the juvenile justice system (Patrick et al. 2011). The YFC specifically hired Spanish speaking caregivers in an attempt to meet this need, and out of the over 400 youths served, 37% are Hispanic. Ana and the other Spanish speaking Care Partners were able to understand the needs of these families, help them connect to available services, and offer support that held meaning for them and was therapeutic. Further, the staff explicitly encouraged family involvement and leadership by asking group members what they wanted in the way of programming, and providing a budget through grant funds that the leadership groups (both the Parent Leadership Group and the Youth Leadership Group) could use to support their ideas.
I am a proud single parent of two lovely youths who struggle with emotional and behavioral challenges. I have had to learn to navigate the system of care to ensure that my children receive appropriate services. This journey has been difficult but has motivated me to work in the Human Services field. As a Care Partner at the YFC, I provide support and intensive care coordination. The most challenging part of my role is first meeting the family in crisis. Sometimes I meet the parent at the court house and other times I go to meet with them at their home. That initial time you meet is vital because this is when the parent really needs someone to talk to. Latino families and other families of color often have few options for services or service providers who speak their language and know their culture. It can be frightening and confusing. You, as Care Partner, need to develop that initial trust and rapport. In some cases too, the family’s needs are so intense that they must be discussed with a clinician to get a better understanding of how to best assist the family. This is why regular weekly individual and group supervision are so important, so that you have the opportunity to discuss the issues your families are currently tackling, and share options on how to best assist the family. The clinical director also has a beeper, so consultation is available if needed outside of formal supervision. As part of my work at CoC, I also began to facilitate a Latino support group at the Youth and Family Center because I knew that in my community there was not a space where Spanish speaking parents with children with special needs could meet and receive support. While not therapy, this group is therapeutic. As a result of this group, families not only supported each other, but began to take on leadership roles, supporting the YFC, providing input into hiring of Family Center staff, as well as programming and policy decisions. From the beginning, we encouraged members of this group and others to participate in the planning of activities, such as family nights and cultural events. They also organized and planned their own activities using grant funds, and now nine members of this group are attending college. I believe that I can connect with parents because I understand first hand the struggles they are facing, I can speak their language, and I know the importance of receiving nonjudgmental support when in crisis. Understanding where parents are coming from is the essential ingredient of being a good Care Partner. Also important is providing support and encouragement for families to take the lead and contribute to the creation of a place that meets their needs.
Christine Kroell, Director of Family Support and Training I began my involvement with CoC during the first grant effort, WCC, when I was hired as a Family Partner. As a parent with a son with significant mental health needs, I wanted to work with families like my own. It is such a different journey and I wanted to help other families going through it. The Family Partner role involved supporting the family in the wraparound team process in conjunction with the Care Coordinator (who was a trained clinician). It was my role to make sure that the family’s perspective was heard and incorporated into all levels of the wraparound team planning process. Part of what was expected in my work with families was to let them know that I had been through similar experiences as a parent, as a way of developing rapport and trust. While this might seem like an easy task, it was actually the most challenging part of the job, and one that requires a good deal of training and supervision. Knowing what to share, when to share, and importantly, when not to share personal information is critical. Self-disclosure should ideally provide some hope or helpful experience. However, just because an experience worked for your family does not mean it will be right for the family with whom you are working. In addition, it should not be about validating your own experience, but helping to normalize theirs.
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In the new grant, CMCC, I assumed the role of Assistant Family Center Director. Among other things, I was a liaison to the courts, and worked with the schools. Initially, it was important to develop relationships with the special education staff in the schools and the Probation Officers (PO) in the court, and understand their culture and systems. However, as families with significant challenges came through, I used my family experience and personal background to help bridge the communication between families and staff within these two systems. I would say, ‘‘Let me tell you what I went through,’’ and I was able to educate probation officers and school personnel about the parent perspective—that as a parent, you will go to the ends of the earth to get what is best for your child. The POs were glad to have me sit in on the Child in Need of Services (CHINS) process because I understood what the family was trying to communicate. As a result, the POs would get a different understanding of the family and the family would be more willing to work with the system. All of the people involved in developing the CMCC grant really valued the family role and created the structure, through this grant, that allowed us to work in the schools and the courts. Titles matter, and having family members represented at all levels and professionalizing the role are important to being initially accepted within these systems. Developing relationships and showing the value of experiential expertise in fostering communication and mutual understanding led to further respect and changes in the ways in which staff work with families. I have since moved on to become a Director of Family Support and Training for the State’s effort to provide wraparound services and I have obtained my masters degree. CoC supported and nurtured my professional development and provided me with the experience and opportunities that allowed me to move into a higher level management position. Tammy Twomey, Data Collector I am a 41 year old mother of a son with mental illness mixed with severe behavioral problems, all of which have made my work history very challenging through the years. I spent many years as a waitress or cashier trying to find a position that would understand my child and the difficulties I faced daily with school phone calls, leaving early for emergency meetings, or other child related problems. My child’s needs drove my schedule and few employers accepted this. I learned quickly to advocate for my child and myself, as well as to manage all of the daily challenges, but I still lost many jobs. I was working at Walmart when a friend suggested I apply to a position at CoC. I did not get the first position I applied for (Care Partner), but the
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manager saw something in me and recommended I apply for another position within CoC as a Data Collector. When I read the job description, I knew that this was where I needed to be; it was perfect for me. One problem was I needed some computer skills and at that point, they were limited. However, I was willing and eager to learn. Starting was tough, especially with the computer tasks, but even more intimidating were all the professionals with their college backgrounds. I knew my years of experience with my son got me in the door, but I did not feel I had much to offer, especially in meetings. I sat quietly a lot of the time, not understanding what was being said with the big words and acronyms and afraid to look stupid if I asked too many questions. But I had great managers and we had lots of training to help us learn what we needed, not only for the field work, but to get around the office, including both one on one supervision, and group supervision, so I never felt alone if I had a question. They also worked with me to gradually build my computer skills. Over time, I came to realize that I am just as qualified and my words are just as important as someone with a college degree— especially when I am out doing an interview with a family. They look at me as a professional, but also feel very comfortable with me because they know I am also a parent just like them. I never judge, and sometimes share just enough to help ease them. I have been told when they talk with me, they feel like they are with a ‘‘real’’ person, not like some of the other professionals who come into their home. So they trust me, and they are not afraid to answer the very personal survey questions, knowing I am not there to hurt them or take their children away. Our whole data collection team is made up of caregivers of children with problems, and we are culturally diverse. This too is important for creating a team that works, and being able to match families to data collectors to build that trust and comfort. For those who are considering hiring a caregiver within a SOC, it is important to treat that parent as a professional and understand that what they say is important, not only in a meeting room, but especially to that scared parent receiving services who feels alone, like no one understands them. But as hired professionals, we are scared at first too, and providing training, gentle guidance, and patience as we learn our new roles will pay off with better family engagement. Finally, hiring a team of caregivers, rather than just one token position, will provide us with a source of support as well. I have now increased my computer skills to the point where I actually manage several spreadsheets. I am now the person I always knew I could be because someone gave me a chance, despite the things that held me back for years. And my son does not let me forget it—‘‘If it wasn’t for me, Mom, you would still be at Walmart!’’
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Lessons Learned As articulated in all three staff accounts, supervision is an essential component in helping caregivers to grow in their provider roles. Caregivers are hired because they possess skills that are unique. They have the experiential expertise that enhances their ability to engage families. In order to help them succeed in their positions, we found that supervision on a weekly basis is necessary to develop skills and troubleshoot clinical issues. It is important that the clinical supervisor possess the skills to work with caregivers and respect their expertise while helping them to learn how to recognize important clinical issues, conduct safety planning, write appropriate contact notes, and develop good service plans. In addition to individual supervision, it is also important to provide weekly group supervision. Group supervision allows the caregivers and other staff members to hear from each other regarding methods that do or do not work, and support one another in their skill development.
Summary and Implications Systems Change We believe the CoC model promoted systems change through the employment of caregivers in a wide variety of roles, particularly as co-trainers, on-site liaisons to service systems, and care coordinators. Caregivers in these positions worked with staff in other agencies through training, coaching, and modeling strength based approaches, as well as acting as cultural brokers for the families being served within those systems. Staff who worked with CoC caregivers changed the ways in which they worked with their families, and some of these changes have been sustained through state level policy changes. Further, because many of the caregivers who were hired, trained and promoted within CoC have now moved into other roles within the state mental health or child welfare systems, they will continue to promote strength based work with families in those systems. This was an evolving process and was made possible by two key factors. First, grant funding allowed for initial support of caregivers in the Family Partner role and as cotrainers in the TLC. Their interactions with child serving systems promoted a new perspective and respect for the value of lived experience and strength based work with families. Second, the community engagement and participatory process that occurred in the planning of the second grant promoted system buy-in and allowed for an imbedded role for caregivers working directly with staff and families in the courts. However, change requires continued
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maintenance and support. We found that in those systems where funding, policy, or organizational supports were not in place, changes that occurred through training or liaison work have been harder to sustain. For instance, the liaison services to the courts and family support services in the schools have not been sustained. However, the class action law suit has sustained and expanded wraparound services throughout the state, although the model for these wraparound services is similar to Worcester Communities of Care, with a two-person team including a clinically trained Care Coordinator and a caregiver who fills the role of Family Partner, supporting and advocating for the family. In terms of the YFC support services (youth groups, caregiver support groups), CoC is working with the Massachusetts Department of Children and Families (DCF) to explore possible sustainability through their new Family Resource Center effort which is conceived as a community based center where youth and families can be connected to needed services. DCF has indicated verbally their intention to transform the YFC to become a DCF Family Resource Center. They have also expressed a desire to obtain technical assistance from CoC leadership to help them establish other Family Resource Centers in MA, based on CoC experience with establishing the YFC. Thus, in our experience, permanent funding streams or state level policy changes are needed for long term sustainability of system of care efforts. Necessary Supports for Hired Caregivers Clearly, it is important when hiring caregivers into positions at all levels to provide them with appropriate supports within the organization. This begins first with creating the right job descriptions that take into consideration the experience of a caregiver in lieu of a degree. The management team worked very closely with the university to develop job descriptions that would recognize the number of years caregivers provided support to their youth as work experience. A formula was negotiated whereby 3 years of experience navigating the service system on behalf of a child was equal to 1 year of college (e.g., 12 years equaled a B.A.). This was essential in order to adequately compensate a caregiver based on their experiential expertise, and to professionalize the positions. The job descriptions that were created continue to be active within the university and additional people with ‘‘lived experience’’ have been hired into the Department of Psychiatry outside of CoC. Managers also need to be able to build on the strengths of their staff, recognize and balance the family challenges that these employees face, and be willing to work with them on skill areas that present challenges. Hiring caregivers to provide care coordination required having a
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supervisor who was able to be supportive and understand that they were not clinicians, but respected their lived expertise and provided guidance regarding clinical issues. Helping them to develop their skills regarding documentation, contact notes, service plans, safety plans, and the like, was also necessary and for some was a steep learning curve. Regular individual (usually one half hour), as well as group (usually 1 hour) supervision is necessary. In addition, hiring teams of caregivers provides a built-in network of support as they learn their new roles. Necessary Caregiver Characteristics Caregivers also need to be ready for these positions. In hiring caregivers as staff, we found it was important that they have strong engagement skills, knowledge of the community, an ability to collaborate with providers and convey the family perspective while understanding system limitations, and be able to maintain an appropriate balance when sharing their personal experiences. Many skills can be learned, but close attention needs to be paid when providing training and supervision. If it becomes clear that someone is not able to do the job, e.g., in learning to do the documentation or how to use the computer, it might not be a best fit; however that determination should only be made when everything has been tried to accommodate the learning curve. Benefits of the CoC Model We believe that the CoC model is innovative in systems of care, particularly in the expansion of caregiver roles, the extent of family voice in the development of the YFC, and its emphasis on an approach that includes support and skill building groups, along with intensive wraparound services. This model has served to increase access to a broad array of services and supports for diverse families—families who, because of previous experiences with the system or cultural and language barriers, have not been successfully engaged. Hiring caregivers who reflect the language, culture and experience of those being served and modeling the parentprovider partnership throughout the project, has helped to not only engage families, but to build bridges with and change the ways in which other systems work with families as well. This model also gave CoC the ability to reach and support more families with fewer funds by hiring and training caregivers to do the care coordination and other programming with clinical oversight rather than hiring multiple clinicians. Overall, the CoC model attempts to create a sense of community for families who face significant mental health issues with their youths and are often isolated and marginalized, empowering them to create and contribute to an
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array of family driven services and supports. Similarly, CoC was designed in partnership with consumers and stakeholders, and possibly because of this participatory process, recognized the need to work within the larger systems that impact youths with SED and their families, creating a strong role for consumers, both in terms of internal staffing and in working with other service systems. Finally, the results of the National Evaluation have been positive, consistently showing both clinically and statistically significant gains in youth and family outcomes that have been sustained for up to 2 years (Wenz-Gross et al. 2010). While the study is limited by the lack of a comparison group, and further research is needed to document system level changes, this approach appears to hold promise not only for the families receiving the care, but for improving the ways in which systems approach care delivery and family engagement. Caregivers who are hired into these positions also appear to benefit by increased sense of self worth and fulfillment, as well as opportunities for career advancement. Acknowledgments This work was supported in part by a System of Care cooperative agreement between SAMHSA and the Commonwealth of Massachusetts Department of Mental Health (SM57006).
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