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Work, Life, and the Mental Health System of Care


Work, Life, and the Mental Health System of Care

A Guide for Professionals Supporting Families of Children with Emotional or Behavioral Disorders
Authors: Julie M. Rosenzweig Ph.D., LCSW, Eileen M. Brennan Ph.D.   Foreword Author: The Late Jane Knitzer   Invited Contributors: Mary I. Armstrong Ph.D., Rosalind Chait Barnett Ph.D., Jennifer R. Bradley Ph.D., Ana Maria Brannan Ph.D., Geraldine Burton, Christine S. Davis Ph.D., Mary E. Evans RN, Ph.D., Barbara J. Friesen Ph.D., Geetha Gopalan, Katherine J. Huffstutter Ph.D., Carolyn Kagan Ph.D., Judy Kendall RN, Ph.D., Suzan Lewis Ph.D., Lisa Ackerson Liberman M.S.W., Frances L. Lynch Ph.D., M.S.P.H., Mary M. McKay Ph.D., LCSW, Linda T. Roundtree, Sandra A. Spencer, Lisa M. Stewart M.S.W., Stephanie Bornstein, Marlene Penn M.S.W., Peter Marsh M.Phil, Dip., Anna M. Malsch Ph.D., Joan C. Williams

ISBN: 978-1-55766-827-1
Pages: 400
Copyright: 2008
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When a child has an emotional or behavior disorder, parents experience a host of extra challenges as they attempt to meet their caregiving and employment responsibilities: stigma, increased stress, child care difficulties, lack of workplace supports. Professionals need to know how to help parents address these critical issues-and now there's a book that shows the way. Expertly researched and enhanced with actual strategies used by parents, this accessible resource gives professionals the up-to-date knowledge they need to support entire families, ease the pressures they face, and connect them with the best help and services.

Readers will start with an inside look at what happens within a family when a child has an emotional or behavior disorder. Then they'll get a primer on parents' support needs and in-depth information and guidance they'll use to help parents

  • overcome stigma, an inhospitable workplace culture, and other challenges to work–life integration
  • communicate effectively on the job and with service providers to receive support and information
  • solve the child care dilemma with options such as flexible work schedules, in-home care, and the use of inclusive child care centers
  • improve access to school programs—and their child's outcomes
  • navigate the complex mental health system
  • manage the direct and indirect financial costs of having a child with an emotional or behavior disorder
  • connect with community supports through the neighborhood, churches, cultural groups, friendship networks, and peer support groups

Throughout the book, expert contributors blend the latest research with candid stories from parents, giving readers the wisdom and sensitivity they need to work skillfully with families. And to help professionals move the field forward with confidence, the book clarifies current policies, pinpoints gaps in knowledge, and maps out what needs to be done to improve family supports and services. A clear and informative resource that will benefit a wide range of readers—including social workers, special educators, psychologists, human resource professionals, and family support specialists—this is the book professionals need to empower and educate families in their quest for successful work–life integration.

Learn more about the series.

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Reviews

Review: International Journal of Social Welfare
"The book covers a wide range of research showing the benefits and gaps in programs . . . practitioners and parents would learn much from discussions of innovative programs in schools, childcare settings, and the workplace that are succeeding in providing parents with the flexibility, community connections, and service coordination required for the family to participate in treatment without having to sacrifice quality of life."
Review: Psychiatric Services
". . . a useful review of the research literature on community supports of all types . . . this book is recommended as a resource for persons needing familiarity with the evidence base for both formal and informal community-based supports."
Review by: Sharon Rosenkoetter, Early Childhood Leadership Directions, Oregon State University
"Early childhood leaders from a variety of disciplines will welcome this important research-based volume . . . Promising strategies for practice and policy offer hope for both employers and family members."
Review by: Deborah Perry, Assistant Professor, Johns Hopkins Bloomberg School of Public Health
"Unique . . . integrates powerful, first-hand accounts from families whose children have mental health conditions with rigorous, theory-driven research."
Series Preface
Editorial Advisory Board
About the Authors
About the Contributors
Foreword Jane Knitzer
Preface Julie M. Rosenzweig , Eileen M. Brennan, with Joan C. Williams, Stephanie Bornstein
Acknowledgments

I. Family Support in Children’s Mental Health

  1. The Intersection of Children’s Mental Health and Work–Family Studies
    Julie M. Rosenzweig and Ana María Brannan

  2. Family Supports Needed by Working Parents
    Barbara J. Friesen, Eileen M. Brennan, and Marlene Penn

  3. Inside the Family: Insights and Experiences of Family Members
    Julie M. Rosenzweig and Judy Kendall

  4. Work–Life Integration: History, Theory, and Strategy
    Julie M. Rosenzweig, Rosalind Chait Barnett, Katherine J. Huffstutter, and Lisa M. Stewart
II. Challenges and Solutions for Families
  1. Mental Health Services and Supports for Children and Families
    Eileen M. Brennan, Mary E. Evans, and Sandra A. Spencer

  2. The Workplace: Work–Life Integration Barriers and Supports
    Julie M. Rosenzweig, Linda T. Roundtree, and Katherine J. Huffstutter

  3. Child Care: An Essential Support for Working Families
    Eileen M. Brennan, Jennifer R. Bradley, and Lisa Ackerson Lieberman

  4. Achieving School–Family Collaboration for Children with Emotional or Behavioral Disorders
    Geetha Gopalan, Geraldine Burton, Mary M. McKay, and Julie M. Rosenzweig

  5. Economic Impact and Supports
    Eileen M. Brennan and Frances L. Lynch

  6. The Policy Context: A Cross-National Comparison
    Eileen M. Brennan and Peter Marsh

  7. Finding Voice: Promoting Work–Life Integration Through Communication Competence
    Julie M. Rosenzweig, Mary I. Armstrong, Christine S. Davis, and Anna M. Malsch

  8. Building Community Supports for Work–Life Integration
    Carolyn Kagan, Suzan Lewis, and Eileen M. Brennan

Index

Excerpted from Chapter 2 of Work, Life, and the Mental Health System of Care: A Guide for Professionals Supporting Families of Children with Emotional or Behavioral Disorders, by Julie M. Rosenzweig, Ph.D., LCSW, and Eileen M. Brennan, Ph.D.

Copyright © 2008 by Paul H. Brookes Publishing Co. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Domains of Support for Families Who Have Children with Mental Health Difficulties

Families of children with mental health difficulties may need support and services in many areas of their daily lives. Seven key domains are 1) family relations, 2) mental health, 3) employment, 4) child care, 5) education, 6) economic arrangements, and 7) community involvement. Using a family support lens, each domain will be discussed briefly in this chapter. Other chapters in this volume will take up each support domain in greater depth.

Family Relations

Although some parents report that raising a child with emotional or behavioral difficulties can have positive effects on family members, high levels of caregiver strain have also been documented (Brannan, Heflinger, & Bickman, 1997; Kendall, 1998; McDonald, Poertner, & Pierpont, 1999; Smith, Oliver, & Innocenti, 2001; Yatchmenoff, Koren, Friesen, Gordon, & Kinney, 1998). Children who exhibit high levels of troubling or difficult behavior, who are suspended or expelled from school, or who are involved in the juvenile justice system can heighten parental stress levels and set up disputes between parents about how to deal with their child’s behavior (Brannan & Heflinger, 2001; Kendall & Shelton, 2003). Family members who are caring for children with social or emotional difficulties may also be in constant conflict with their youngsters and may need support and relief (Early, Gregoire, & McDonald, 2002; Kendall, 1998).

Extended family members and friends may offer some of the emotional support and parenting advice that parents need and may agree to care for the child to provide respite for the parents; however, when parents are geographically removed from their families, have relatives who are unable or unwilling to provide support and respite, or are overwhelmed despite help from friends and extended family, support services may be needed to provide the necessary counseling, parenting education, and respite (Bruns & Burchard, 2000; Friesen & Brennan, 2005). Interpersonal relations and family management may improve with this support, which will lower caregiver strain and enable employed caregivers to work with fewer interruptions and distractions.

Mental Health

As each child is added to the family, parents travel a new pathway of human development, which varies according to the biological endowments and life experiences of that son or daughter. Many parents detect early mental health problems within the family home, which are subsequently confirmed by child care providers or primary health care providers; the lag between identification of the problem and reception of services often stretches to 2 years or more (Kutash, Duchnowski, & Friedman, 2005). Other parents struggle to care for children who have been affected by traumatic events or whose early life circumstances have been harsh and debilitating (Glazer, 2000; National Scientific Council on the Developing Child, 2004). Their children’s difficulties may put them on a long and complicated journey leading to a formal diagnosis of a mental health disorder and participation in treatment planning for their children. Diagnosis, treatment planning, and even participation in treatment can be very time consuming, and health and mental health systems are often set up with the presumption that a parent is available during the workday (Kagan, Lewis, & Heaton, 1998). Parents arrange the transportation of their children to mental health appointments, attend meetings with mental health service providers, and sometimes enter into treatment with their children. If their children have major mental health crises, parents may even take extended time off from work to ensure that their children’s condition is stabilized or that they get more intensive services (Rosenzweig, Brennan, & Ogilvie, 2002; see also Chapter 5).

Parents often need special supports to negotiate the complexities and requirements of the mental health service delivery system while maintaining a work life. Individualized service plans that include wraparound family supports may lessen the difficulties of meeting their children’s and family’s needs (Burchard, Bruns, & Burchard, 2002). Often, the teams supporting families through the wraparound process include family support specialists, who can advocate for the family’s needs including arranging treatment around parent work hours (Walker & Schutte, 2005). When such comprehensive services are not available, parents may need to reach out to family resource networks to gain the assistance of peer navigators who have also had to find their way through the maze of mental health systems while maintaining employment.

Employment

The work experiences of family members can be greatly influenced by their children’s mental health difficulties and the types of supports available in their communities. Mental health service providers often expect parents to be available for appointments during the workday, child care providers or school personnel may pressure parents to intervene in crises, older children may call parents directly when their lives spiral out of control, and community program staff members may require parents to be present to supervise their children in daytime activities (Rosenzweig et al., 2002). To be able to maintain a work life while attending to the needs of their child with mental health problems, family members seek employment accommodations. Ideally, their job will allow employee-driven flexibility in work arrangements and will also provide medical leave in situations when the child’s care requires it (Galinsky, Bond, & Hill, 2004; Rosenzweig & Huffstutter, 2004). When employers do not permit these accommodations, some family members find jobs in more family–friendly organizations or even change the type of work they do in order to meet their children’s needs (Rosenzweig et al., 2002).

Family members may find real support in their workplaces from supervisors who are willing to allow flexibility through scheduling shifts, job shares, telecommuting, or working from home (Hopkins, 2005). Co-workers can also provide support by covering for an employed parent who needs to handle a child’s mental health crisis during work hours (Goshe et al., 2006). Both supervisors and co-workers can also provide the emotional support and validation the parent needs. More formal supports can also be found in the workplace through flexible work arrangements and leaves negotiated by human resources staff and employee assistance programs. Finally, family organizations are beginning to collaborate with other stakeholders to provide resources and supports for employees who are asking for flexibility due to their dependent care needs (Perrin et al., 2004).

Child Care

Unless they are able to work out care given by another parenting adult using work shifts that don’t overlap (tag-team parenting) or can take their children to work with them, family members need child care arrangements for their children who have difficult or troubling behavior (Boushey, 2006; Rosenzweig et al., in press). When children’s mental health difficulties surface in child care settings, employed parents may be interrupted at work and asked to pick up their children for the rest of the day or may even have their child care arrangement terminated (Gilliam, 2005; Gilliam & Shahar, 2006; Owens & Ring, 2007). Cultural and family values are usually key factors in child care choice (Bradley & Kibera, 2006), but if their children have social and emotional difficulties, parents sometimes settle for whatever child care arrangements will accommodate their children (Brennan, Bradley, Ama, & Cawood, 2003; Emlen & Weit, 1999; Lieberman, 2005).

Some families can count on child care help from extended family members, including grandparents and adult relatives, or on informal child care exchanges with their neighbors (Porter, 1998; Sonestein, Gates, Schmidt, & Bolshun, 2002). For most parents of children with mental health problems, these “kith and kin” arrangements may not be practical because of the unique needs of their children (Rosenzweig et al., in press). Extended family members may only be willing to assume the care of children with difficult or troubling behavior if the time commitment is limited or if they have relevant experience or expertise. Alternatively, child care supports can be given in the family’s own home by paid providers who either have been trained to handle the child’s needs or are willing to learn (Lieberman, 2005). Arrangements can also be made with child care centers and family child care homes that are willing to include children with mental health difficulties and receive specialized supports from mental health consultants (Alkon, Ramler, & MacLennan, 2003; Cohen & Kaufmann, 2000). Finally, parents may receive assistance in locating culturally appropriate and inclusive child care arrangements through child care resource and referral agencies (Smith, Vinci, & Galván, 2003) or family support organizations. Even given these resources, for many working parents, finding and maintaining child care for their children with mental health difficulties remains a major obstacle to staying employed (Brennan & Brannan, 2005).

Education

Employed parents may experience their greatest difficulty integrating work and family responsibilities after their children enter the formal educational system.

If children exhibit difficult or troubling behavior in school, they may be referred for mental health and special education evaluation, and family members may be involved in multiple meetings to exchange information and plan for services, depending on the outcome of the evaluation processes. Children who receive a psychiatric diagnosis of a condition that puts them at risk for out-of-home placement may be classified as being Seriously Emotionally Disturbed (SED; Substance Abuse and Mental Health Services Administration, 1993) and are entitled to receive mental health services, sometimes school-based. When children’s mental health difficulties are classified to determine their eligibility for special education, they may be labeled as having an Emotional Disturbance (Center for Effective Collaboration and Practice, 2007; Kates-McElrath, Agnew, Axelrod, & Bloh, 2007). Finally, some children who have behavioral challenges, especially those with social difficulties, may not be identified for special education services but still may have emotional or behavior management needs that concern their classroom teachers. Even with supports such as school-based mental health services, special education services, and behavioral aides in place, children still may experience mental health crises in the school environment. When classroom teachers do not have the training to help children who are experiencing unusual emotional or behavioral difficulties and insufficient supports are in place, parents are often called at work to intervene (Rosenzweig et al., 2002). In extreme situations, children may be suspended or expelled from school because of their behavior, requiring working parents to find ways to monitor their children when they are not in school. Family members who participate in focus groups and interviews have reported that repeated work interruptions and absenteeism because of their children’s problems in school have led to their termination from work (Huffstutter, Bradley, Brennan, & Rosenzweig, 2007a; Rosenzweig et al., 2002).

What supports are available for families of school-age children with mental health difficulties? Parents report drawing on resources within the schools and their social networks to cobble together crisis plans (Rosenzweig et al., 2002). Co-workers may alert them to calls coming from school and cover for them at work while family members deal with immediate difficulties. In some communities, formal supports are also available through innovative school-based programs that involve parents in planning for their children’s services, provide training and support for monitoring and managing their children’s behavior, and reduce their isolation (Atkins et al., 2006; McKay, Nudelman, McCadam, & Gonzales, 1996; Pollio, McClendon, North, Reid, & Jonson-Reid, 2005; Stone, McKay, & Stoops, 1996). School-based services are integral to the successful building of a system of care (Stroul & Friedman, 1986) around children who are receiving mental health services. Considering the unique needs of families, these services may focus on parent education, family support, engagement in school programs, or the empowerment of parents (Hoagwood, 2005; Sims, 2002; see also Chapter 8). Family members who are engaged extend themselves to participate in prevention and treatment programs on behalf of their children (McKay & Bannon, 2004) and may support other parents participating in these programs. When families are empowered, parents take active roles in planning services for their children, participate in school and community decisions, and advocate for their children’s rights within treatment and wider community environments (Broussard, 2003; Heflinger & Bickman, 1996). Although family engagement and empowerment are critical for children’s successful participation in school and treatment services, actions related to their children’s needs may take considerable time. Family support in the form of flexibility in scheduling on the part of educators, treatment providers, and work supervisors may be necessary for parents to sustain the involvement that is pivotal for their children’s success in school environments.

Economic Arrangements

Having a child with an emotional or behavioral problem can have serious economic consequences for families. Although there is little research that addresses the economic costs for families, the few available studies have confirmed that there are considerable out-of-pocket expenses associated with their children’s mental health treatment (Farmer, Stangl, Burns, Costello, & Angold, 1999; Ringel & Sturm, 2001). Parents may need to direct substantial parts of their income to pay provider fees, co-payments associated with insurance plans, pharmacy bills for prescribed medications, transportation costs associated with going to and from treatment sessions, and child care for siblings (Lynch, 2007). There are also important indirect costs to parents who may have to work fewer hours to engage in treatment with their children or to respond to crises in child care settings or schools (Rosenzweig et al., 2002; Ward et al., 2006). When children have extended bouts of serious mental health difficulties, employed parents may need to request a leave of absence from work to stabilize their children’s condition. Most of these family medical leaves are unpaid and may have financially disastrous consequences for economically insecure families (Cantor et al., 2001; Gerstel & McGonagle, 1999).

Paying for mental health care and coping with the indirect costs of their children’s mental health difficulties can be particularly challenging for families. Public or private insurance is often not enough to cover the child’s treatment costs, and parents may need to seek advice regarding financial strategies that might be possible. Most families cannot rely on their networks of friends and family members to provide the sound and technical financial advice they need, or to give or lend them money when they cannot meet their expenses. If parents work for a large company or organization with a human resources department, they can get some assistance regarding their health insurance, other benefits, and leave policies (Sutton & Noe, 2005; WorldatWork, 2005). Mental health service organizations may also provide information regarding financial assistance available through governmental programs. Finally, family support networks may have peer navigators who can help parents find and secure the financial assistance they need (Perrin et al., 2004). Families may need to apply for cash assistance to repair property damage caused by the child, to enroll the child in special recreational programs that are set up to provide positive experiences for children with behavior problems, or to pay for treatment services not covered by insurance (Lynch, 2007). Similar to other forms of family support, the use of monetary assistance is best determined by family members themselves (FFCMH, 1992).

Community Involvement

Families who have children with emotional or behavioral difficulties are fully integrated into the community when they can participate in the life of the community in ways that are meaningful and sustained (see Chapter 12). Parents are supported in communities to which they belong by sustaining networks of individuals who interact frequently, provide mutual social support, and exchange material assistance (Bookman, 2004; Voydanoff, 2004). Unfortunately, building and sustaining support networks takes time, which is often in short supply for employed parents of children with mental health problems (Lynch, 2007). These important informal networks can also provide valuable information and connections to resources or directly supply emotional support and respite to beleaguered families (Kagan et al., 1998).

Parents’ chronic lack of time and their concern about the acceptance of their children’s behavior also may make family members hesitate to join religious, cultural, civic, service, and recreational organizations in the community or participate in their activities (Poston et al., 2007). For many parents, participation in community groups can provide meaningful social roles, help build informal connections, enhance work-related skills, and add to quality of life (Kagan et al., 1998). In some parts of the United States, community-based organizations are designed to directly support families in a time-efficient and effective way. Family resource centers act as one-stop service centers, providing a variety of supports appropriate to the culture and locale (Dunst & Trivette, 2001). Some communities also have developed full-service schools that are designed to serve the whole family, providing educational programs, recreational activities, and human service supports (Dryfoos, 1998, 2005). Finally, parents have found meaningful community roles in the peer-to-peer family support organizations they joined (McCammon, Spencer, & Friesen, 2001; Santelli et al., 1995, 1997). As members of community-based, peer-support organizations, they have helped other parents navigate their way through mental health and employment benefit systems (Huffstutter, Bradley, Brennan, Penn, & Rosenzweig, 2007; Kagan et al., 1998) and have joined with their peers to advocate for change.

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The System of Care Handbook
By Stroul, Elizabeth

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