Matern Child Health J (2015) 19:252–256 DOI 10.1007/s10995-014-1617-6
COMMENTARY
Family Leaders and Workforce Leadership Development Michelle C. Reynolds • Megan Birzer • Jane St. John • Nora Wells • Betsy Anderson Deborah Klein Walker
•
Published online: 11 October 2014 Springer Science+Business Media New York 2014
Family members can become leaders who are a voice not only for their own family, but also as part of a collective voice to advocate for changes in services, programs, policies, and organizations that benefit all families. Family leadership is important because family leaders can keep the focus on the family experience, providing their own and other family stories, experiences, and perspectives to provide first hand feedback on the best ways of meeting the needs of families and the barriers and challenges that families face along the way. Strong family leaders not only have an impact on Maternal and Child Health (MCH) leadership, they represent a vital part of the MCH workforce. In the past, family leaders ‘‘emerged,’’ either by their
Betsy Anderson was Formerly with the Federation for Children with Special Needs, Boston, MA. M. C. Reynolds M. Birzer (&) J. St. John Institute for Human Development, University of Missouri, Kansas City, MO, USA e-mail: [email protected] M. C. Reynolds e-mail: [email protected] J. St. John e-mail: [email protected] N. Wells Family Voices National Center for Family Professional Partnerships, Albuquerque, NM, USA e-mail: [email protected] B. Anderson Boston, MA, USA e-mail: [email protected] D. K. Walker Abt Associates, Cambridge, MA, USA e-mail: [email protected]
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own initiative and efforts or from other sectors such as education and early childhood program spheres (special education, Head Start, etc.). Family leaders are a valuable resource to MCH; therefore, as MCH identifies strategies for building the leadership capacity of the current workforce and developing the next generation of leaders, it is essential that the role of family and family leaders be infused in all aspects of MCH leadership development. In addition to family leaders, youth and young adults acting as self-advocates play an important role in MCH programs and policy development. Family leaders have become a vital part of the workforce and will be integral in providing a family-driven response to the changing environment, opportunities and realities that MCH will face in the future. This will require that MCH directors recognize the need to ensure family leaders have the knowledge, skills, confidence, and experience to represent the family perspective. Further, MCH as a field will need to cultivate an environment within programs and practices that embraces family leaders and youth/young adult self-advocates as vital members within the MCH workforce.
Focusing on Family Leaders Family leaders are typically a group of highly motivated individuals representing a diverse range of cultures, beliefs and socioeconomic backgrounds. They bring with them a wealth of experience and skills, often gained from areas outside of the MCH field, that are useful in MCH as well as in other policy and advocacy arenas beyond MCH. Family leaders often come to know the importance of building their own leadership skills in order to partner and advocate at many levels. Parents, especially those of children with
Matern Child Health J (2015) 19:252–256
special needs, may have begun building leadership skills around advocating for their own child, faced with the complex system of services they need to navigate for their child and family. Frequently these families turn to groups of other families with shared experiences to help them and, in this way, begin to learn about opportunities to participate in advocacy efforts to improve services for all children. Many families learn about opportunities to participate with MCH programs at the state level through their involvement in programs such as the Family-to-Family Health Information Centers (F2F HICs) [1]. These centers are state specific, family-run organizations funded by the Maternal and Child Health Bureau (MCHB) that provide assistance and training to help families of children and youth with special health care needs (CYSHCN) to help them navigate health care services. F2F HICs actively partner with MCH Title V Programs and many other organizations within their states and work together across all states through Family Voices, Inc. a national family-led organization. Family leaders play many roles that impact MCH programs and practices. Just as other MCH leaders, family leaders often evolve from focusing on their own families or special interests, to a broader scope, focusing on the wider community. As families become confident in navigating supports, services and resources for their own lives and become connected with other families, they may begin helping other families, formally or informally, who experience similar circumstances. As they advocate for changes that will improve the lives of their own family, families often recognize that these changes would also improve services and supports for others and begin focusing more on changes to services, policies, programs, and policies. Frequently families become involved in program and policy opportunities through their participation in family organizations, such as F2F HICs, where they gain knowledge and skills as well as peer support to help them participate in such partnership activities. Families may be invited to participate in focus groups, complete satisfaction surveys, serve on advisory boards or councils, or provide professional development on issues from the family perspective. Frequently they become involved in these opportunities through their participation in family organizations, where they gain support from other families and learn about and are supported to participate in such partnership activities. Some family leaders may begin as volunteers on committees or work in ‘‘family positions’’ within an MCH-funded organization or become employed on an MCH-funded project within an F2F HIC. Family leaders may also get involved in systemic or legislative policy change by providing testimony at hearings, meeting in person with legislators, or writing newspaper editorials or letters to the editor on systems or policy issues. It is important to note, however, that many family leaders’
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skills evolve from advocating for their own family first, then helping other families, and finally working with organizations or systems; but this is not the only progression, nor is it always a linear progression. Family leaders move into the area of family leadership that is the most compelling for them at a given time in their own life course [2].
Competencies of Family Leaders As family leaders strive to make a difference for other families and to make positive change in organizations, systems and policy, they benefit from opportunities to enhance their existing skills and develop new leadership skills. Families serving in leadership roles are enriched by the development of specific skill sets, knowledge, values and personal qualities. Even though each family’s experience and perspective is unique, there are core skills and competencies that better enable the family member to be a strong leader and a collective voice more broadly for families. Family leaders who have opportunities to cultivate their skills through training will likely have a broader impact, especially if this training is part of opportunities to learn from, share their experiences with and be supported by other family leaders. No matter the type of training and leadership development provided, it is important that family leaders gain an understanding of the same leadership competencies as the MCH workforce, such as the MCH Leadership Competencies [3] adopted in 2007. A core component for leaders within MCH is an awareness and sensitivity to family dynamics and cultures. Families come from diverse cultural, ethnic and socioeconomic backgrounds; respect for different attitudes, choices, practices, and beliefs of others is imperative. Family leaders must understand not only their own family culture and dynamics but must respect other families’ diverse culture, ethnic and socioeconomic backgrounds, values and choices. This is especially important when family leaders are representing the larger ‘‘family perspective’’ in leadership roles as well as when supporting or mentoring other families to be strong partners within MCH. Strong communication skills are key for all leaders. Family leaders must learn alongside other MCH professionals to develop communication skills that can be used in many different arenas: when talking to other families, to professionals in many disciplines and to policymakers. Skills are enhanced when families are able to gain strategies to be a better listener, discover their own communication style, and become aware of barriers and roadblocks to effective communication. Family leaders should also benefit from practice telling their stories and become comfortable expressing their opinions to a variety of
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audiences. Telling their story and advocating beliefs in a compelling way, without becoming overly emotional, is a skill that takes practice. Another essential leadership skill is the ability to build partnerships and relationships with other stakeholders. Family leaders must be supported to discover ways to work with groups, organizations or systems. It is necessary for family leaders to understand as well as explore team and group dynamics and the benefits of and keys to collaboration. Learning decision-making and problem solving skills helps family leaders to be aware of what causes conflict and how to best resolve conflicts, solve problems or make decisions. Family leaders are valuable to MCH and should therefore be supported and ‘‘cultivated.’’ The extensive system of family support in F2F HICs currently engaged with MCH Title V programs in every state can be very helpful in this leadership training and development. By acquiring knowledge and skills, building on strengths, respecting diversity, and responding to change, family members grow as leaders, and become able to make an impact on a larger level [4]. As family leaders are cultivated and nurtured alongside other MCH workforce leaders, it is important to recognize that family leaders will need support beyond training on competencies of family leadership. Families need financial support for and sometimes alternative modes of participation in activities. New family leaders benefit from mentoring by experienced family leaders knowledgeable about key issues such as understanding the difference between family advocacy and systems advocacy. As with any professional’s time, a family leader’s time is valuable. Leadership activities are often built on top of other day-to-day commitments; it is important that family leaders are compensated for their time and that hardship is minimized. It is important to also recognize that personal family roles and responsibilities may at times need to take precedence over other roles.
Matern Child Health J (2015) 19:252–256 Table 1 Key milestones for family involvement and leadership in MCH programs 1982–1992
Series of 6 Surgeon General’s conferences, all of which included families
1983
MCHB’s convened a ‘‘crippled children’s’’ program meeting to discuss creating more family-focused approaches and activities
1985
First MCHB request for proposal to which family organizations could respond
1986
First year a parent attended and presented at the AMCHP conference
1987
CAPP survey on family roles in hospitals and Title V advisory committees
1988
First parent employed, as a parent, in a state Title V program (Iowa)
1989
OBRA federal legislation changed CYSHCN language to emphasize ‘‘family centered, community based, coordinated care’’
1992
CAPP survey on family involvement in Title V CYSHCN programs
1993
CAPP report on employment in Title V programs
1993
Family Voices receives funding from MCHB to support partnership and participation Of families of CYSHCN and develop a network of volunteer family leaders in every state
1993
Conference for family leaders employed in Title V programs (21 state CYSHCN Programs)
1999
Family Voices, with funding from Robert Wood Johnson Foundation and support from MCHB, develops pilot F2F HICs in 6 states
2002
MHCB provides grants to 6 states to develop state-wide F2F HICs, supporting family leadership
2002
MCHB Strategic Plan expanded 1989 language to include ‘‘the entire MCH population’’ (not only families of CYSHCN)
2002
Family Voices surveys of family involvement in state Title V CYSHCN and MCH programs
2003–2005
Centers for Medicare and Medicaid Services (CMS) partners with MCHB to coordinate funding for F2F HICs in 29 additional states
2005
MCHB funding provided for F2F HICs in every state
2005
AMCHP Family Leadership Caucus initiated
History of Family Leadership in MCH Programs
2006
AMCHP included parent/family member on the Board of Directors
MCHB has been a national leader in partnering with families at all levels in many of its programs, especially those serving CYSHCN. The long MCH history of partnering with families in policy development, materials creation, meetings, conferences, funding decisions, grant reviews, training programs, and performance measurement has demonstrated their belief in its importance. This history has helped both MCH and families to evolve key components and mechanisms for effective implementation and the critical need to expand the engagement of families across all programs and representing all groups of families served. A brief history illustrates how partnerships among families and the MCH community have expanded over the
2006
LEND Family Discipline Competencies developed
123
past 35 years (See Table 1). In the 1980s, the MCHB, together with the Surgeon General, held a series of Surgeon General’s conferences and meetings that helped to bring families and professionals into discussion and partnership to improving services [5] which included families as key partners. The topics addressed (e.g., children on ventilators, family-centered community systems of care, breastfeeding, transition, etc.) were strongly influenced by the experiences and perspectives of families who were key partners in designing and carrying out the conferences. Shortly after
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the Surgeon General conferences, MCHB began funding projects run by family-led organizations, so that families were directing and providing contributions in substantive ways to MCH planning. The 1989 Omnibus Budget Reconciliation Act included federal legislative language that supported ‘‘family-centered, community based, coordinated care’’ for CYSHCN [6]. This legislation established a critical partnership focus between MCHB and families of CYSHCN. Family Voices, a national network of families of CYSHCN, began to receive funding from MCHB in the early 1990s to develop and expand effective partnerships between families and MCH programs among other activities. With the leadership of Family Voices, MCHB has funded F2F HICs, state level family-led projects, since 2005. These projects actively support training and roles for families engaged with their MCH state programs and many have extensive training programs for families on family leadership. The 2002 MCHB Strategic Plan articulated that principles of partnership with families, by then widely accepted within programs for CYSHCN, must extend to the ‘‘entire MCH population.’’ In addition, activities in state Title V MCH programs themselves have long histories of partnerships with families (Table 1). In the 1970s and 1980s in Massachusetts, for example, families participated actively in the public process for revising the public health regulations on 24-h hospital visiting hours and in the public process around hospital design and building. By the late 1980s a family member was employed by the MCH program in Iowa to provide expertise and perspective as a parent. Families have collected information about family partnerships and roles within CYSHCN and MCH programs in a series of surveys beginning in 1987. The first survey, conducted by the CAPP (Collaboration among Parents and Health Professionals) at the Federation for Children with Special Needs identified parent participation in hospitals and Title V Advisory Committees [7]. In the 1992 survey of all state CYSHCN programs conducted 5 years later, CAPP found that 41 % of states paid family members as staff or consultants and 69 % involved family members in in-service trainings [8, 9]. In a follow-up survey of all state CYSHCN programs 10 years later in 2002, Family Voices found an increase in the number states (83 %) with paid family members and an increase (89 %) of states that involve family members in these trainings [10]. The 2002 survey of all MCH programs conducted by Family Voices included similar questions about family participation that had been used in the survey of CYSHCN programs; 36 % of MCH programs indicated at that time that they paid family members as staff or consultants and 39 % indicated that they involved family members in in-service trainings [11]. These surveys conducted from 1987 to 2002 showed that roles for families in Title V CYSHCN and MCH
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programs in states have changed over the past two decades. Family roles which began with CYSHCN programs have been incorporated into broader MCH state programs. State respondents indicated that partnering with family-led organizations, including families from diverse socio-economic and ethnic groups, was a key strategy for developing and sustaining family leader involvement in Title V programs. State MCH and CYSHCN leaders in the 2001/2002 surveys indicated that families were engaged in committees, in-service trainings, special initiatives, block grant development and reviews, as well as were employed as staff members [10, 11]. The Association of Maternal and Child Health Programs (AMCHP) has also modeled how family leaders, family scholars and family delegates can have an impact beyond their own family. AMCHP recognizes the progression of family leadership evolving from the family to the community, and finally to stakeholder groups. The inner ring of family leadership is focused on the services the family is receiving; the middle ring focuses on schools and neighborhoods in the community and the outer ring of family leadership focuses on stakeholders the develop and implement policies that families need [12]. Family members have been included in the AMCHP meeting sessions since the late 1990s when they were also given scholarships to attend the meeting. AMCHP established a Family Leadership Caucus in 2005 to ensure active engagement of families in AMCHP work, and the first parent became a member of the AMCHP Board of Directors in 2006. Another example of how MCHB has recognized an equal role of family leaders is within the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) interdisciplinary training programs. LEND training programs support family leaders as both trainees and faculty members in their training programs. Family leaders of CYSHCN represent the ‘‘family discipline’’ which is ‘‘the body of knowledge…that is inherent to the family, acquired by life experience and affected by culture and community’’ [13]. The LEND programs have developed LEND Family Trainee Competencies [12] and a Promising Practices in Family Mentorship Guidebook [14].
Looking to the Future MCHB should continue to develop opportunities for family leaders across all of its programs and partner actively with family organizations such as Family Voices and F2F HICs as a means of supporting current leaders as well as cultivating leaders for the next generation. A concerted emphasis needs to focus on including the diversity of families served by the MCH programs in training and partnership opportunities so that MCH is responsive to the
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changing environment. By expanding the cadre of family leaders and cultivating the MCH workforce to embrace all family leaders as equals, MCH will be prepared to respond to the ever-changing needs of those environments and the health of the families who are their ultimate mission. This will require new strategies for identifying and cultivating family leaders who are consumers of MCH, including CYSHCN, programs. Family leaders provide firsthand knowledge of how they are responding to the demands and opportunities in their own day-to-day lives while also providing solutions that would immediately impact the lives of those being served. MCHB must also consider all members of the extended family as family leaders; these members include fathers, grandparents, parents with disabilities, siblings of CYSHCN, and CYSHCN who can serve as self-advocates themselves as they come of age and enter adulthood. Families and family leaders provide a perspective that is unique and critical to establishing successful and effective policies and practices. Cultivating family leadership alongside MCH workforce leaders is important, not only for families, but also for organizations and systems as well. Family leaders can work with other professionals as problem solvers to build more efficient systems that better meet the needs of all families being served by the system. In order for this to happen, both organizations and families need to be equipped with knowledge about the types of skills and competencies and environments that would best support family leaders in this role. With family leaders and family organizations moving into elevated positions alongside other MCH workforce leaders, a wave of positive policy and practice change is within our reach.
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4.
5.
6. 7.
8.
9.
10.
11.
12.
13.
References 1. Health Resources and Services Administration. Family/Professional Partnerships Program: Family-to-Family Health Information Centers. Accessed July 15, 2014 at http://mchb.hrsa.gov/ programs/familytofamily/. 2. Association for University Centers (AUCD)/Leadership Education in Neurodevelopmental and Related Disabilities (LEND). Family Faculty Framework. (2012). http://www.aucd.org/docs/ lend/family_faculty/fammentor/wi_fcc_comps.pdf. 3. MCH Leadership Competencies Workgroup (Editors). (2009). Maternal and Child Health Leadership Competencies, version 3.0.
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14.
http://devleadership.mchtraining.net/mchlc_docs/mch_leader ship_comp_3-0.pdf. Accessed December 12, 2013. Buck, S. (2003). Building capacity through leadership development Programs. Journal of Family & Consumer Sciences, 95(3), 8–11. Report of the Surgeon General’s Workshop on Children with Handicaps and Their Families. (1983). US Department of Health and Human Services, Public Health Service, DHHS Publication 83-50194. Omnibus Budget Reconciliation Act (OBRA) of 1989, PL 101-239, 42 U.S.C. §§ 1396 et seq. Report of a National Survey of Family Involvement in Hospital and CSHCN Advisory Programs. (1987). Collaboration Among Parents and Health Professionals (CAPP), Federation for Children with Special Needs, Boston, MA. Families in Program and Policy: Report of a 1992 Survey of Family Participation in State Title V Programs for Children with Special Health Care Needs. (1993). CAPP National Parent Resource Center, Federation for Children with Special Needs, Boston, MA. Family Employment in State Title V Programs: Conference Proceedings and Survey Report (1993). CAPP National Parent Resource Center, Federation for Children with Special Needs, Boston, MA. Wells, N., & Anderson, B. (2005). Families in Program and Policy FiPPS CSHCN Report: Interviews on Family Participation with State Title V Children with Special Health Care Needs Programs. Family Voices, Albuquerque, NM. https://org2.salsa labs.com/o/6739/images/Fipps_CSHCN_Final-1.pdf. Anderson, B., & Wells, N. (2005). Families in Program and Policy FiPPS MCH Report: interviews on Family participation with State Title V Maternal and Child health Programs. Family Voices, Albuquerque, NM. http://www.familyvoices.org/admin/ miscdocs/files/Fipps_MCH_Final.pdf. Forlenza, I. Cultivating family leaders: An MCH workforce strategy. Presentation accessed on July 15, 2014 at: https://s3. amazonaws.com/v3-app_crowdc/assets/events/9vR87u4Lh8/activ ities/B2_-_Families_are_the_Horizontal_Thread_in_Vertical_Sys tems_%E2%80%93_Cultivating_Family_Leaders_into_the_MCH_ Workforce.original.1389567083.pdf. Cohen, D., Feuer, S., Goldfarb, F., Lalinde, P., Smith, M., Yingling, J., Pepper, N., & Pariseau, C., (2005). LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Family Competencies. Association of University Centers on Disability, Silver Spring, MD. Accessed by http://www.aucd.org/ docs/lend/family_faculty/famcomp/competencies2006.pdf. Ogburn, E., Roberts, R., Pariseau, C., Levitz, B., Wagner, B., Moss, J., & Adelmann, B. (2006). Promising Practices in Family Mentorship: A Guidebook for MCHB-LEND Training Programs. Association of University Centers on Disability, Silver Spring, MD. Accessed by http://www.aucd.org/docs/lend/family_faculty/ fammentor/guidebook2006.pdf.
COMMENTARY
Family Leaders and Workforce Leadership Development Michelle C. Reynolds • Megan Birzer • Jane St. John • Nora Wells • Betsy Anderson Deborah Klein Walker
•
Published online: 11 October 2014 Springer Science+Business Media New York 2014
Family members can become leaders who are a voice not only for their own family, but also as part of a collective voice to advocate for changes in services, programs, policies, and organizations that benefit all families. Family leadership is important because family leaders can keep the focus on the family experience, providing their own and other family stories, experiences, and perspectives to provide first hand feedback on the best ways of meeting the needs of families and the barriers and challenges that families face along the way. Strong family leaders not only have an impact on Maternal and Child Health (MCH) leadership, they represent a vital part of the MCH workforce. In the past, family leaders ‘‘emerged,’’ either by their
Betsy Anderson was Formerly with the Federation for Children with Special Needs, Boston, MA. M. C. Reynolds M. Birzer (&) J. St. John Institute for Human Development, University of Missouri, Kansas City, MO, USA e-mail: [email protected] M. C. Reynolds e-mail: [email protected] J. St. John e-mail: [email protected] N. Wells Family Voices National Center for Family Professional Partnerships, Albuquerque, NM, USA e-mail: [email protected] B. Anderson Boston, MA, USA e-mail: [email protected] D. K. Walker Abt Associates, Cambridge, MA, USA e-mail: [email protected]
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own initiative and efforts or from other sectors such as education and early childhood program spheres (special education, Head Start, etc.). Family leaders are a valuable resource to MCH; therefore, as MCH identifies strategies for building the leadership capacity of the current workforce and developing the next generation of leaders, it is essential that the role of family and family leaders be infused in all aspects of MCH leadership development. In addition to family leaders, youth and young adults acting as self-advocates play an important role in MCH programs and policy development. Family leaders have become a vital part of the workforce and will be integral in providing a family-driven response to the changing environment, opportunities and realities that MCH will face in the future. This will require that MCH directors recognize the need to ensure family leaders have the knowledge, skills, confidence, and experience to represent the family perspective. Further, MCH as a field will need to cultivate an environment within programs and practices that embraces family leaders and youth/young adult self-advocates as vital members within the MCH workforce.
Focusing on Family Leaders Family leaders are typically a group of highly motivated individuals representing a diverse range of cultures, beliefs and socioeconomic backgrounds. They bring with them a wealth of experience and skills, often gained from areas outside of the MCH field, that are useful in MCH as well as in other policy and advocacy arenas beyond MCH. Family leaders often come to know the importance of building their own leadership skills in order to partner and advocate at many levels. Parents, especially those of children with
Matern Child Health J (2015) 19:252–256
special needs, may have begun building leadership skills around advocating for their own child, faced with the complex system of services they need to navigate for their child and family. Frequently these families turn to groups of other families with shared experiences to help them and, in this way, begin to learn about opportunities to participate in advocacy efforts to improve services for all children. Many families learn about opportunities to participate with MCH programs at the state level through their involvement in programs such as the Family-to-Family Health Information Centers (F2F HICs) [1]. These centers are state specific, family-run organizations funded by the Maternal and Child Health Bureau (MCHB) that provide assistance and training to help families of children and youth with special health care needs (CYSHCN) to help them navigate health care services. F2F HICs actively partner with MCH Title V Programs and many other organizations within their states and work together across all states through Family Voices, Inc. a national family-led organization. Family leaders play many roles that impact MCH programs and practices. Just as other MCH leaders, family leaders often evolve from focusing on their own families or special interests, to a broader scope, focusing on the wider community. As families become confident in navigating supports, services and resources for their own lives and become connected with other families, they may begin helping other families, formally or informally, who experience similar circumstances. As they advocate for changes that will improve the lives of their own family, families often recognize that these changes would also improve services and supports for others and begin focusing more on changes to services, policies, programs, and policies. Frequently families become involved in program and policy opportunities through their participation in family organizations, such as F2F HICs, where they gain knowledge and skills as well as peer support to help them participate in such partnership activities. Families may be invited to participate in focus groups, complete satisfaction surveys, serve on advisory boards or councils, or provide professional development on issues from the family perspective. Frequently they become involved in these opportunities through their participation in family organizations, where they gain support from other families and learn about and are supported to participate in such partnership activities. Some family leaders may begin as volunteers on committees or work in ‘‘family positions’’ within an MCH-funded organization or become employed on an MCH-funded project within an F2F HIC. Family leaders may also get involved in systemic or legislative policy change by providing testimony at hearings, meeting in person with legislators, or writing newspaper editorials or letters to the editor on systems or policy issues. It is important to note, however, that many family leaders’
253
skills evolve from advocating for their own family first, then helping other families, and finally working with organizations or systems; but this is not the only progression, nor is it always a linear progression. Family leaders move into the area of family leadership that is the most compelling for them at a given time in their own life course [2].
Competencies of Family Leaders As family leaders strive to make a difference for other families and to make positive change in organizations, systems and policy, they benefit from opportunities to enhance their existing skills and develop new leadership skills. Families serving in leadership roles are enriched by the development of specific skill sets, knowledge, values and personal qualities. Even though each family’s experience and perspective is unique, there are core skills and competencies that better enable the family member to be a strong leader and a collective voice more broadly for families. Family leaders who have opportunities to cultivate their skills through training will likely have a broader impact, especially if this training is part of opportunities to learn from, share their experiences with and be supported by other family leaders. No matter the type of training and leadership development provided, it is important that family leaders gain an understanding of the same leadership competencies as the MCH workforce, such as the MCH Leadership Competencies [3] adopted in 2007. A core component for leaders within MCH is an awareness and sensitivity to family dynamics and cultures. Families come from diverse cultural, ethnic and socioeconomic backgrounds; respect for different attitudes, choices, practices, and beliefs of others is imperative. Family leaders must understand not only their own family culture and dynamics but must respect other families’ diverse culture, ethnic and socioeconomic backgrounds, values and choices. This is especially important when family leaders are representing the larger ‘‘family perspective’’ in leadership roles as well as when supporting or mentoring other families to be strong partners within MCH. Strong communication skills are key for all leaders. Family leaders must learn alongside other MCH professionals to develop communication skills that can be used in many different arenas: when talking to other families, to professionals in many disciplines and to policymakers. Skills are enhanced when families are able to gain strategies to be a better listener, discover their own communication style, and become aware of barriers and roadblocks to effective communication. Family leaders should also benefit from practice telling their stories and become comfortable expressing their opinions to a variety of
123
254
audiences. Telling their story and advocating beliefs in a compelling way, without becoming overly emotional, is a skill that takes practice. Another essential leadership skill is the ability to build partnerships and relationships with other stakeholders. Family leaders must be supported to discover ways to work with groups, organizations or systems. It is necessary for family leaders to understand as well as explore team and group dynamics and the benefits of and keys to collaboration. Learning decision-making and problem solving skills helps family leaders to be aware of what causes conflict and how to best resolve conflicts, solve problems or make decisions. Family leaders are valuable to MCH and should therefore be supported and ‘‘cultivated.’’ The extensive system of family support in F2F HICs currently engaged with MCH Title V programs in every state can be very helpful in this leadership training and development. By acquiring knowledge and skills, building on strengths, respecting diversity, and responding to change, family members grow as leaders, and become able to make an impact on a larger level [4]. As family leaders are cultivated and nurtured alongside other MCH workforce leaders, it is important to recognize that family leaders will need support beyond training on competencies of family leadership. Families need financial support for and sometimes alternative modes of participation in activities. New family leaders benefit from mentoring by experienced family leaders knowledgeable about key issues such as understanding the difference between family advocacy and systems advocacy. As with any professional’s time, a family leader’s time is valuable. Leadership activities are often built on top of other day-to-day commitments; it is important that family leaders are compensated for their time and that hardship is minimized. It is important to also recognize that personal family roles and responsibilities may at times need to take precedence over other roles.
Matern Child Health J (2015) 19:252–256 Table 1 Key milestones for family involvement and leadership in MCH programs 1982–1992
Series of 6 Surgeon General’s conferences, all of which included families
1983
MCHB’s convened a ‘‘crippled children’s’’ program meeting to discuss creating more family-focused approaches and activities
1985
First MCHB request for proposal to which family organizations could respond
1986
First year a parent attended and presented at the AMCHP conference
1987
CAPP survey on family roles in hospitals and Title V advisory committees
1988
First parent employed, as a parent, in a state Title V program (Iowa)
1989
OBRA federal legislation changed CYSHCN language to emphasize ‘‘family centered, community based, coordinated care’’
1992
CAPP survey on family involvement in Title V CYSHCN programs
1993
CAPP report on employment in Title V programs
1993
Family Voices receives funding from MCHB to support partnership and participation Of families of CYSHCN and develop a network of volunteer family leaders in every state
1993
Conference for family leaders employed in Title V programs (21 state CYSHCN Programs)
1999
Family Voices, with funding from Robert Wood Johnson Foundation and support from MCHB, develops pilot F2F HICs in 6 states
2002
MHCB provides grants to 6 states to develop state-wide F2F HICs, supporting family leadership
2002
MCHB Strategic Plan expanded 1989 language to include ‘‘the entire MCH population’’ (not only families of CYSHCN)
2002
Family Voices surveys of family involvement in state Title V CYSHCN and MCH programs
2003–2005
Centers for Medicare and Medicaid Services (CMS) partners with MCHB to coordinate funding for F2F HICs in 29 additional states
2005
MCHB funding provided for F2F HICs in every state
2005
AMCHP Family Leadership Caucus initiated
History of Family Leadership in MCH Programs
2006
AMCHP included parent/family member on the Board of Directors
MCHB has been a national leader in partnering with families at all levels in many of its programs, especially those serving CYSHCN. The long MCH history of partnering with families in policy development, materials creation, meetings, conferences, funding decisions, grant reviews, training programs, and performance measurement has demonstrated their belief in its importance. This history has helped both MCH and families to evolve key components and mechanisms for effective implementation and the critical need to expand the engagement of families across all programs and representing all groups of families served. A brief history illustrates how partnerships among families and the MCH community have expanded over the
2006
LEND Family Discipline Competencies developed
123
past 35 years (See Table 1). In the 1980s, the MCHB, together with the Surgeon General, held a series of Surgeon General’s conferences and meetings that helped to bring families and professionals into discussion and partnership to improving services [5] which included families as key partners. The topics addressed (e.g., children on ventilators, family-centered community systems of care, breastfeeding, transition, etc.) were strongly influenced by the experiences and perspectives of families who were key partners in designing and carrying out the conferences. Shortly after
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the Surgeon General conferences, MCHB began funding projects run by family-led organizations, so that families were directing and providing contributions in substantive ways to MCH planning. The 1989 Omnibus Budget Reconciliation Act included federal legislative language that supported ‘‘family-centered, community based, coordinated care’’ for CYSHCN [6]. This legislation established a critical partnership focus between MCHB and families of CYSHCN. Family Voices, a national network of families of CYSHCN, began to receive funding from MCHB in the early 1990s to develop and expand effective partnerships between families and MCH programs among other activities. With the leadership of Family Voices, MCHB has funded F2F HICs, state level family-led projects, since 2005. These projects actively support training and roles for families engaged with their MCH state programs and many have extensive training programs for families on family leadership. The 2002 MCHB Strategic Plan articulated that principles of partnership with families, by then widely accepted within programs for CYSHCN, must extend to the ‘‘entire MCH population.’’ In addition, activities in state Title V MCH programs themselves have long histories of partnerships with families (Table 1). In the 1970s and 1980s in Massachusetts, for example, families participated actively in the public process for revising the public health regulations on 24-h hospital visiting hours and in the public process around hospital design and building. By the late 1980s a family member was employed by the MCH program in Iowa to provide expertise and perspective as a parent. Families have collected information about family partnerships and roles within CYSHCN and MCH programs in a series of surveys beginning in 1987. The first survey, conducted by the CAPP (Collaboration among Parents and Health Professionals) at the Federation for Children with Special Needs identified parent participation in hospitals and Title V Advisory Committees [7]. In the 1992 survey of all state CYSHCN programs conducted 5 years later, CAPP found that 41 % of states paid family members as staff or consultants and 69 % involved family members in in-service trainings [8, 9]. In a follow-up survey of all state CYSHCN programs 10 years later in 2002, Family Voices found an increase in the number states (83 %) with paid family members and an increase (89 %) of states that involve family members in these trainings [10]. The 2002 survey of all MCH programs conducted by Family Voices included similar questions about family participation that had been used in the survey of CYSHCN programs; 36 % of MCH programs indicated at that time that they paid family members as staff or consultants and 39 % indicated that they involved family members in in-service trainings [11]. These surveys conducted from 1987 to 2002 showed that roles for families in Title V CYSHCN and MCH
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programs in states have changed over the past two decades. Family roles which began with CYSHCN programs have been incorporated into broader MCH state programs. State respondents indicated that partnering with family-led organizations, including families from diverse socio-economic and ethnic groups, was a key strategy for developing and sustaining family leader involvement in Title V programs. State MCH and CYSHCN leaders in the 2001/2002 surveys indicated that families were engaged in committees, in-service trainings, special initiatives, block grant development and reviews, as well as were employed as staff members [10, 11]. The Association of Maternal and Child Health Programs (AMCHP) has also modeled how family leaders, family scholars and family delegates can have an impact beyond their own family. AMCHP recognizes the progression of family leadership evolving from the family to the community, and finally to stakeholder groups. The inner ring of family leadership is focused on the services the family is receiving; the middle ring focuses on schools and neighborhoods in the community and the outer ring of family leadership focuses on stakeholders the develop and implement policies that families need [12]. Family members have been included in the AMCHP meeting sessions since the late 1990s when they were also given scholarships to attend the meeting. AMCHP established a Family Leadership Caucus in 2005 to ensure active engagement of families in AMCHP work, and the first parent became a member of the AMCHP Board of Directors in 2006. Another example of how MCHB has recognized an equal role of family leaders is within the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) interdisciplinary training programs. LEND training programs support family leaders as both trainees and faculty members in their training programs. Family leaders of CYSHCN represent the ‘‘family discipline’’ which is ‘‘the body of knowledge…that is inherent to the family, acquired by life experience and affected by culture and community’’ [13]. The LEND programs have developed LEND Family Trainee Competencies [12] and a Promising Practices in Family Mentorship Guidebook [14].
Looking to the Future MCHB should continue to develop opportunities for family leaders across all of its programs and partner actively with family organizations such as Family Voices and F2F HICs as a means of supporting current leaders as well as cultivating leaders for the next generation. A concerted emphasis needs to focus on including the diversity of families served by the MCH programs in training and partnership opportunities so that MCH is responsive to the
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changing environment. By expanding the cadre of family leaders and cultivating the MCH workforce to embrace all family leaders as equals, MCH will be prepared to respond to the ever-changing needs of those environments and the health of the families who are their ultimate mission. This will require new strategies for identifying and cultivating family leaders who are consumers of MCH, including CYSHCN, programs. Family leaders provide firsthand knowledge of how they are responding to the demands and opportunities in their own day-to-day lives while also providing solutions that would immediately impact the lives of those being served. MCHB must also consider all members of the extended family as family leaders; these members include fathers, grandparents, parents with disabilities, siblings of CYSHCN, and CYSHCN who can serve as self-advocates themselves as they come of age and enter adulthood. Families and family leaders provide a perspective that is unique and critical to establishing successful and effective policies and practices. Cultivating family leadership alongside MCH workforce leaders is important, not only for families, but also for organizations and systems as well. Family leaders can work with other professionals as problem solvers to build more efficient systems that better meet the needs of all families being served by the system. In order for this to happen, both organizations and families need to be equipped with knowledge about the types of skills and competencies and environments that would best support family leaders in this role. With family leaders and family organizations moving into elevated positions alongside other MCH workforce leaders, a wave of positive policy and practice change is within our reach.
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References 1. Health Resources and Services Administration. Family/Professional Partnerships Program: Family-to-Family Health Information Centers. Accessed July 15, 2014 at http://mchb.hrsa.gov/ programs/familytofamily/. 2. Association for University Centers (AUCD)/Leadership Education in Neurodevelopmental and Related Disabilities (LEND). Family Faculty Framework. (2012). http://www.aucd.org/docs/ lend/family_faculty/fammentor/wi_fcc_comps.pdf. 3. MCH Leadership Competencies Workgroup (Editors). (2009). Maternal and Child Health Leadership Competencies, version 3.0.
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http://devleadership.mchtraining.net/mchlc_docs/mch_leader ship_comp_3-0.pdf. Accessed December 12, 2013. Buck, S. (2003). Building capacity through leadership development Programs. Journal of Family & Consumer Sciences, 95(3), 8–11. Report of the Surgeon General’s Workshop on Children with Handicaps and Their Families. (1983). US Department of Health and Human Services, Public Health Service, DHHS Publication 83-50194. Omnibus Budget Reconciliation Act (OBRA) of 1989, PL 101-239, 42 U.S.C. §§ 1396 et seq. Report of a National Survey of Family Involvement in Hospital and CSHCN Advisory Programs. (1987). Collaboration Among Parents and Health Professionals (CAPP), Federation for Children with Special Needs, Boston, MA. Families in Program and Policy: Report of a 1992 Survey of Family Participation in State Title V Programs for Children with Special Health Care Needs. (1993). CAPP National Parent Resource Center, Federation for Children with Special Needs, Boston, MA. Family Employment in State Title V Programs: Conference Proceedings and Survey Report (1993). CAPP National Parent Resource Center, Federation for Children with Special Needs, Boston, MA. Wells, N., & Anderson, B. (2005). Families in Program and Policy FiPPS CSHCN Report: Interviews on Family Participation with State Title V Children with Special Health Care Needs Programs. Family Voices, Albuquerque, NM. https://org2.salsa labs.com/o/6739/images/Fipps_CSHCN_Final-1.pdf. Anderson, B., & Wells, N. (2005). Families in Program and Policy FiPPS MCH Report: interviews on Family participation with State Title V Maternal and Child health Programs. Family Voices, Albuquerque, NM. http://www.familyvoices.org/admin/ miscdocs/files/Fipps_MCH_Final.pdf. Forlenza, I. Cultivating family leaders: An MCH workforce strategy. Presentation accessed on July 15, 2014 at: https://s3. amazonaws.com/v3-app_crowdc/assets/events/9vR87u4Lh8/activ ities/B2_-_Families_are_the_Horizontal_Thread_in_Vertical_Sys tems_%E2%80%93_Cultivating_Family_Leaders_into_the_MCH_ Workforce.original.1389567083.pdf. Cohen, D., Feuer, S., Goldfarb, F., Lalinde, P., Smith, M., Yingling, J., Pepper, N., & Pariseau, C., (2005). LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Family Competencies. Association of University Centers on Disability, Silver Spring, MD. Accessed by http://www.aucd.org/ docs/lend/family_faculty/famcomp/competencies2006.pdf. Ogburn, E., Roberts, R., Pariseau, C., Levitz, B., Wagner, B., Moss, J., & Adelmann, B. (2006). Promising Practices in Family Mentorship: A Guidebook for MCHB-LEND Training Programs. Association of University Centers on Disability, Silver Spring, MD. Accessed by http://www.aucd.org/docs/lend/family_faculty/ fammentor/guidebook2006.pdf.
