Family Impact Project Report · (SED) throughout the state of Colorado. Part of this commitment has...

Colorado Federation of Families for Children’s Mental Health

Family Impact Project Report

August 8, 2005

Prepared by:

Sue L. Peterson, Senior Analyst Judith Cohen, President

Market Views

Family Impact Project Report August 8, 2005

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Table of Contents

Executive Summary…………………………………………………………..... 3

Introduction……………………………………………………………..……… 5

Literature Review……………………………………………….…………...…. 7

Methodology…………………………………………………………………..… 21

Summary of Findings

Family members……………………………………………………..….. 23

Professionals……………………………………………………………. 30

Chairpersons………………………………………………………..…… 37

Observation of meetings………………………………………..…......... 41

Detailed Findings

Family members……………………………………………………..….. 42

Professionals……………………………………………………….……. 65

Chairpersons……………………………………………………….…… 87

Conclusions………………………………………………………………….…. 95

Recommendations………………………………………………………….….. 97

Bibliography……………………………………………………………….…… 99

Appendix………………………………………………………………...……… 106


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Executive Summary The Colorado Federation of Families for Children’s Mental Health is committed to improving services for children with mental illness and serious emotional disturbance (SED) throughout the state of Colorado. Part of this commitment has been to involve consumers of mental health services and members of families with children with mental illness and SED in organizations that are making policy and developing mental health programs. This Family Impact Project Report was developed to evaluate family and consumer participation in these organizations. Six organizations were identified to participate in this study: 1. Project Bloom: Local Community Governance Team (LCGT) Aurora

2. Project Bloom: Local Community Governance Team (LCGT) El Paso County

3. Project Bloom: Local Community Governance Team (LCGT) Mesa County

4. Blue Ribbon Policy Council on Children’s Mental Health (BRPC)

5. Together We Can

6. Colorado Mental Health Planning and Advisory Council (MHPAC)

Family members, professionals, and the chairperson of each group were interviewed using a specific questionnaire for each type of respondent. Family members received an incentive for their participation. Interviews lasted between one half hour and one hour. In addition, the analyst was able to observe one meeting of each group with the exception of Together We Can.

The research found that consumers and family members are welcomed in the organizations and feel appreciated. All interviewed groups want to see additional family members participating. Professionals feel that their practices are enhanced because of the family participation. Most significantly, all groups identified numerous contributions that consumers and family member have been able to make. These include creation of the family support group in Project Bloom Aurora, a parent Wraparound facilitator in Mesa County, and the family involvement coordinator in Project Bloom El Paso County. However, family members often face demanding challenges with their mentally ill children and that limits their ability to make meaningful contributions. Additional barriers to participation include childcare difficulties, minimal monetary compensation, incomplete understanding of the group’s ability to impact the system, and lack of communication skills.

Because leaving home is so difficult for some family members, they could increase their contributions if there were a way for someone to meet them there and take their ideas to the meeting. Additional recommendations include providing additional supports, training, and formal mentoring. While all groups supply informal mentoring only one offers a formal mentoring program. Participation would be enhanced if family members had a better understanding of the purpose of each group as well as its limitations in terms of influencing programs and policies. Many family members come


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to these groups with excellent communication skills. Others would improve their contributions if they had training in communication. Also, families need a standard form of compensation that does not diminish other financial aid, e.g. SSI, that they might be receiving. All participants agree that family members have important contributions to make to program and policy development.


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Introduction “It’s kept me attuned to the personal impact of policy decision on consumers and family members.” (Professional study respondent) The mission of the Colorado Federation of Families for Children’s Mental Health (the Federation) is to promote mental health for all children, youth and families. The Federation’s main goal is to build family and youth partnerships with systems of care that provide mental health services and supports throughout the State. The Federation wanted to evaluate the impact that consumers and family members have on mental health planning organizations. Previous evaluation efforts have focused on the physical presence of consumers and family members participating in policy making organizations. The Federation is interested in determining what impact families have on professionals within the groups and on the outcomes of the groups themselves. Also of interest is learning what enhances family impact and what impedes it. Mental health planning organizations of interest in this study include: A. Project Bloom: Local Community Governance Teams (LCGTs)

The Federation is a subcontractor on a federal grant which is known as Project Bloom. Project Bloom is designed to establish a cohesive, coordinated system of care for children ages five and under with severe emotional disturbances (SED) in four Colorado communities: El Paso, Fremont, and Mesa Counties and the city of Aurora. The Federation is specifically charged with involving families with children with SED in the development of the system and services established using money from this grant. The LCGTs are the bodies in each community charged with carrying out the provisions of the grant. They are headed by administrators from the local mental health agencies in each of the four communities. B. Blue Ribbon Policy Council on Children’s Mental Health (BRPC)

The leaders of three children’s early mental health service projects—Project Bloom, Kid Connects, and Harambe—along with youth, family members, university partners, state agencies, health/mental healthcare providers, legislators and others meet quarterly to identify common public policy issues, craft public polices and coordinate implementation strategies. C. Together We Can

Together We Can is comprised of community organizations, agencies and families focused on the common goal of supporting families and children with special needs, primarily mental health needs, in northwest Denver.


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D. Colorado Mental Health Planning and Advisory Council (MHPAC)

The Council is the federally authorized advisory body to the State regarding the public mental health system. The Council develops, evaluates and communicates ideas about mental health planning, writes and amends strategic plans for mental health services in the State of Colorado, and advises the State on plans for mental health services. We will begin with a literature review. We then present a description of our methodology and a summary of the findings. These sections will be followed by a detailed report of our findings for each of the groups that were interviewed: family members, professionals, and the chairperson of each organization. The final sections present conclusions and recommendations.


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Literature Review

Introduction--Family Involvement in Decision-Making Historically, planning and provision of services for children’s mental health care have been provider-driven rather than family-driven. Beginning in the 1980s, advocates for children’s mental health, including families and professionals, have influenced the government to require the involvement of families and consumers in the development, implementation, and evaluation of “systems of care,” helping to promote the concept of families as partners. Although progress has been made in recent years, it is still uncommon for families involved in the mental health system to have a voice in making decisions about mental health planning and influencing how system reform should be done (Osher & Osher, 2002). National family advocacy groups such as the Federation of Families for Children’s Mental Health, the National Mental Health Association, and the National Alliance for the Mentally Ill--Children and Adolescent Network have been active in speaking out regarding the services children need as well as participating in leadership positions influencing system change to incorporate family involvement. This literature review examines scholarly articles, books, conference proceedings and government reports related to family involvement and its impact on policy and planning in the area of children’s mental health. The purpose of the literature review is to provide a context for the primary research the

Evolution of the System of Care Concept In recent years, the concept of a system of care has provided a framework for system reform in the area of children’s mental health. The origins of the system of care concept can be traced back to a report published in 1969 by the Joint Commission on the Mental Health of Children where it was revealed that many children and adolescents with serious emotional disturbances were not receiving appropriate services. In addition, the services that were provided were fragmented, uncoordinated, and lacked cohesion (Stroul, 2002). Subsequent government studies reinforced the findings of the Joint Commission, as well as a landmark study entitled Unclaimed Children published by the Children’s Defense Fund (Knitzer, 1982). After intensive advocacy efforts by individuals and groups, the National Institute of Mental Health (NIMH) initiated the Child and Adolescent Service System Program (CASSP) in 1984 in order to assist states and communities in developing coordinated systems of care to serve children and adolescents with severe emotional disturbance and their families. One of CASSP’s goals was to articulate and fully define the system of care concept. The concept was fleshed out in a monograph entitled A System of Care for Children and Adolescents with Severe Emotional Disturbances (Stroul & Friedman, 1986).


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A system of care is defined as “a comprehensive spectrum of mental health and other necessary services which are organized into a coordinated network to meet the multiple and changing needs of children and adolescents with severe emotional disturbances and their families.” Core values state that systems of care should be:

• child-centered and family-focused, with the needs of the child and family dictating the types and mix of services provided.

• community-based, with the locus of services as well as management and decision making responsibility resting at the community level

• culturally competent, with agencies, programs, and services that are responsive to the cultural, racial, and ethnic differences of the communities they serve.

Although systems of care were originally specified to be family-focused, changes in service delivery and agency culture have led to the adoption of a more descriptive term-- family-driven (Osher & Osher, 2002). Guiding principles of systems of care state that services should have the following characteristics (Stroul, 2002):

• Comprehensive, with a broad array of services;

• Individualized to each child and family;

• Provided in the least restrictive, appropriate setting;

• Coordinated both at the system and service delivery levels;

• Involve families and youth as full partners; and

• Emphasize early identification and intervention. A system of care is designed to provide a flexible framework rather than a fixed prescription. The framework enables each community to determine which specific services are appropriate for them. What is commonly called a system of care can vary considerably from community to community (Stroul & Friedman, 1986). Stroul (2002) emphasizes that developing a system of care is a multifaceted, multilevel process that is difficult and complex with challenges at the state policy, local system, and service delivery levels.

Organizations funded by Center for Mental Health Services (CMHS) of the Substance Abuse and Mental Health Services Administration (SAMHSA) have helped to further the system of care concept through their research and activities. These include: the National Technical Assistance Center for Children’s Mental Health at Georgetown University; the Research and Training Center for Children’s Mental Health at the University of South Florida; the Research and Training Center on Family Support and Children’s Mental Health at Portland State University; and the National Resource Network for Child and Family Mental Health Services at the Washington Business Group on Health.


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The Importance of Family Involvement

Osher and Osher (2002) describe the change from provider-driven approaches to family-driven systems of care as a “paradigm shift” that is still in progress. The concept of family-driven applies to family participation in individual service planning for their own children as well as involvement in the setting of policy, design of service systems, service implementation, and outcome evaluation.

In 2003, the President’s New Freedom Commission on Mental Health published Achieving the Promise: Transforming Mental Health in America. One of the top goals identified in the report was to ensure that “mental health care is consumer and family-driven.”

“In a transformed mental health system, a diagnosis of a serous mental illness or serious emotional disturbance will set in motion a well planned, coordinated array of services and treatments defined in a single plan of care. This detailed roadmap—a personalized, highly individualized health management program—will help lead the way to appropriate treatment and supports that are oriented toward recovery and resilience. Consumers, along with service providers, will actively participate in designing and developing the systems of care in which they are involved” (New Freedom Commission on Mental Health, 2003).

The national Federation of Families for Children’s Mental Health is in the process of developing a working definition of “family-driven” to enable policymakers to have a common understanding of the term. An initial draft definition, created in June, 2004 by an expert panel composed of family members, youth, and mental health professionals, follows:

“In making decisions, a family-driven system of care gives precedence to family and youth. Family-driven systems of care actively demonstrate their partnerships with all families and youth by sharing power, resources, authority, and control. Family and youth experiences, their visions and goals, perceptions of strengths and needs, and guidance about what will make them comfortable steer decision making about all aspects of service and system design, operation, and evaluation. Family-driven systems of care are culturally competent environments in which family and youth voices are heard and valued, everyone is respected and trusted, and where families and youth feel it is safe for them to speak honestly. Family-driven systems of care ensure that families and youth have access to sound professional expertise so they have good information on which to base the choices they make” (Davidson, 2004).

Federal Mandates Requiring Family Involvement An important shift in policy at the federal level occurred in 1985 when CASSP added a family goal requiring that state applications for funds describe how families would participate in service planning efforts at the child and family, program, and system levels.


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In 1986, Congress passed the State Mental Health Services Comprehensive Plan (Public Law 99-660) which mandated family member participation in the development of state mental health plans (Focal Point, 1998). Since 1992, the Comprehensive Community Mental Health Services for Children and their Families Program, administered by CMHS, has provided grants to states, communities, territories, and Native American tribes and tribal organizations to improve and expand local systems of care designed to meet the individualized needs of children and adolescents with serious emotional disturbances (SED) and their families. There are currently 61 grant communities and 31 former grant programs. Communities are given flexibility in how they organize their systems of care approach to meet the needs of their children and their families; however, each of these grant-funded programs must include families as partners in designing the system of service delivery (U.S. Department of Health and Human Services, 2004).

The Extent of Family Involvement at the State and Local Levels In the 1990s, authorities began to question the extent of family involvement in system of care policy development. In 1995, a national survey was conducted to determine the

extent of consumer empowerment in the public mental health system (Geller, Brown, Fisher, Grudzinskas, & Manning, 1998). A questionnaire was sent to mental health authorities in all U.S. states and territories asking whether consumer empowerment or responsibility was defined in statutes, regulations, or policies and whether consumers or family members were employed in central or field offices of the authority. Results showed that fewer than half of states addressed consumer empowerment or consumer responsibility in a statute, regulation, or policy. The extent of a state's consumer empowerment had no relationship to region of the country or the state's mental health budget; however, a significant positive relationship was found between extent of empowerment and the size of the state's population and the quality of its mental health services. The study found that state mental health authorities vary widely in their direct

involvement with consumer empowerment

A similar conclusion was reached by the Family Centered Policy Project conducted by the Research and Training Center at Portland State University. The study’s goals were to identify what kind of policy instruments were being used to mandate family member participation in policymaking and to assess the language used to define which family members were considered eligible. The study found that legislation that required consumer and family member participation in children’s mental health policymaking differed widely across states (Focal Point, 1998).

States and communities are creating their own interagency entities for system–level coordination, with some formalizing their structures into councils of government or corporations that can offer joint services. Communities are also creating interagency teams, specific to each child and customized to their circumstances (Stroul, 1996).


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Research has shown that families are involved in planning services more often than they are involved in system management. The Comprehensive Community Mental Health Services Program for Children and Their Families is mandated by Congress to demonstrate the effectiveness of systems of care as well as developing them. A national cross-site evaluation of the program began in 1994. Results of the Phase I assessment indicated that families were actively involved in planning the services they received but less involved in managing the system that delivered those services (Center for Mental Health Services, 1999). The level of family involvement at the system level (i.e., program management and policymaking) was much more variable across sites compared to the consistently strong level of family involvement observed at the service level (i.e., planning the services they received).

Although family input was solicited and considered to be respected, in one-third of the sites families were not represented in executive bodies holding the highest authority for making significant budget and policy decisions for systems of care. Even when policies specifically dictated a certain number of positions for family representatives on boards or management teams, two-thirds of the sites reported difficulties in recruiting families to fill designated spots. Weak family involvement at the system level was attributed to a variety of factors, including too few family representatives, a lack of cultural diversity among family representatives, inadequate training and support of family members to fill representative roles, lack of clarity regarding the role of the representative, and little decision making power.

A study of local systems of care of conducted by the National Technical Assistance Center for Children’s Mental Health at Georgetown University yielded similar results (Stroul, 1996). The communities studied successfully involved parents on the service delivery level but not on the system level. Parents were not meaningfully involved in planning, policymaking or evaluating their systems of care.

Family Members in Advisory Roles

There are a number of benefits to having parents and other family members participate in advisory and advocacy roles. Parents have direct experience with the service system that enables them offer unique insights, they are emotionally invested in child welfare, and they are free to speak out and act without the constraints professionals have (Friesen & Huff, 1990). Families see things with a fresh perspective and may see problems or inconsistencies to which professionals have become accustomed (Jeppson & Thomas, 1995).

Both parents and professionals participating in the Families in Action project conducted by the Research and Training Center at Portland State University agreed that collaboration could and does make a difference in promoting change and improving the lives of children (Vosler-Hunter & Hanson, 1992).

There is a wide range of advisory roles that families can play. Examples of the advisory roles and functions have been identified in the literature (Cross & Friesen,


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2004; Friesen, Giliberti, Katz-Levy, Osher, & Pullman, 2003; Friesen & Stephens, 1998; Jeppson & Thomas, 1995; Moxley, Raider & Cohen, 1989). They fall into the categories of advocate, educator, evaluator and employee/consultant and are presented below.

Advocate

• Propose or respond to specific policy initiatives;

• Serve on boards of directors, advisory boards, and committees;

• Participate at conferences and working meetings;

• Review grants, participate in fundraising; and

• Give testimony to legislators. Educator

• Disseminate information to families, service providers, and policymakers about family perspectives on needed change;

• Determine training needs of providers by participating in interviews or discussion groups;

• Design and produce training programs for professionals and families;

• Co-teach with university faculty or be a guest lecturer;

• Provide case and system-level advocacy training to families; and

• Act as mentors for other families. Evaluator

• Become partners with researchers;

• Evaluate training programs (e.g., attend pilot sessions, review materials);

• Serve on review teams and evaluation groups; and

• Participate in focus groups and interviews. Employee/Consultant

• Become employees of the system, either directly or through contracts with family organizations; and

• Be paid program or policy consultants.

Impact of Family Involvement on Attitudes of Professionals

The results of research conducted by Bailey, Buysse, Smith, and Elam (1992) showed that the presence of parents was found to influence the extent to which professionals perceived a need for change in program practice. Parents and professionals who attended decision-making workshops in which parents were present were positive about


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the experience, and professionals who attended workshops without parents felt that parents should have been in attendance.

An analysis of family participation in relation to service coordination found when family members play a strong, active role in planning discussions collaboration among professionals is improved and family member satisfaction is increased (Koren et al., 1997).

Barriers to Family Member Participation in Decision-Making Bodies

Despite the progress made by advocates and professionals, the partnership principle can be challenging to adhere to in practice. A number of studies have identified a variety of barriers to family participation in policymaking (Alexander & Dore, 1999; Bailey, Buysse, Edmondson & Smith, 1992; Friesen & Huff, 1990; Koroloff, Hunter, & Gordon, 1994; Mayer, 1994; Osher, deFur, Nava, Spencer, & Toth-Dennis, 1999); Simpson, Koroloff, Friesen & Gac, 1999; Tannen, 1996). Barriers and challenges related to the parent’s situation include:

• Limited availability (e.g., inability to leave work or child care, lack of time and/or energy due to the requirements of child care);

• Family crises that require immediate attention;

• Racial and cultural differences, including language barriers;

• Burnout/overextension among active participants

Barriers and challenges related to the parent’s perceptions and beliefs include:

• The stigma attached to mental and emotional problems, as well as concerns over confidentiality;

• Feelings of blame for their children’s mental and emotional problems;

• Feelings of frustration (e.g., feeling excluded or ignored, feeling overwhelmed, feelings of anger or discouragement; perceived lack of understanding by professionals);

• Confusion over role/boundary issues (e.g., the overlap from “client” to “peer”);

• Preoccupation with one’s own “story”;

• Reluctance to openly criticize a system that one is dependent on for fear of repercussions; and

• Lack of recognition of the benefits of participation--issues discussed are not germane to the family’s situation, the motivation for participating is not clear.


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Barriers and challenges related to the parent’s knowledge and skills include:

• Unfamiliarity with the role as a policymaker, including lack of knowledge of the service system, funding mechanisms, and processes by which policies are initiated and changed;

• Lack of information, or not having information in an understandable form on how to participate, the content and language used in policy documents, as well as on how the children’s mental health system functions; and

• Reluctance to disagree with professionals whom they perceive to be more knowledgeable.

Barriers related to mental health professionals and administrators include:

• A low commitment to and respect for the participation of family members in the system of care;

• Belief that parents are responsible for their children’s emotional and behavioral disorders;

• Reluctance to share power/fear or losing control;

• Condescending behavior/lip service paid to parental comments; and

• Clubby atmosphere/exclusive subculture. There is evidence that a substantial minority of professionals still attribute blame to parents. In a survey of 702 members of the 1995 membership of the National Association of Social Workers (NASW), two-fifths of the social workers agreed, either mostly or partially, that parents are responsible for their children’s emotional and behavioral disorders (Data Trends, 2003).

The San Mateo County (CA) Family Partnership Team conducted an evaluation of their system of care. While 95% of the staff interviewed said they believed that parents’ and caregivers’ input was crucial in determining how to meet children’s needs, only 54% agreed that families should be incorporated in every level of decision making in the system of care (McGrane, Newbury, McGrath, Crist-Whitzel, & Aguirre (1998).

Barriers related to the structure and process of the decision making body include:

• Lack of agreement among family members and providers on how collaboration is defined and practiced within a system of care and how power is shared;

• Bureaucratic nature of the service system as a whole (e.g., slow to change);

• Lack of conversation and/or consensus concerning vision and goals;

• Lack of training for family members and providers that: 1) articulates the benefits of families to the system of care; 2) familiarizes families with the agency with which they are working and 3) supports family-provider collaboration;


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• Inconvenient meeting times and locations;

• Expenses that are not reimbursed (e.g., child care, transportation costs, lost wages);

• Token parent representation; and

• Vague language, philosophy, and expectations addressing family-provider collaboration.

Aids to Family Member Participation in Decision-Making Bodies Various studies have identified a variety of factors that have been found to enable family participation in decision-making (Koroloff et al., 1994; Mayer, 1994). These factors relate to the personal attributes of family members and support from others, and include:

Personal attributes of family members

• Well-informed;

• Tenacious/persistent/patient;

• Committed;

• Able to think broadly;

• Assertive;

• Good communication and negotiation skills;

• Able to use anger productively (Dealing with personal anger and using it as a positive force for change has been found to be particularly motivating for advocates); and

• Sense of humor.

Support from others

• Parent support groups;

• Statewide family networks;

• Sympathetic professionals/”system champions”, able to explain benefits of family participation to their peers in the same room; and

• Help from spouses and other family members.


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Various studies have identified suggestions for assisting families in becoming more effective in policymaking. These suggestions include:

• Encourage families to participate as part of a group rather than as individuals Cross and Friesen (2004) suggest that family input can be more effective when family members are representatives of a family advocacy and support organization rather than simply representing themselves as individuals. The authors cite two major advantages to this approach: 1) Family members who represent a constituency gain credibility because they are speaking for a larger group; and 2) Family members can provide backup for each other when conflicts interfere with the ability of individuals to attend meetings.

• Educate professionals on the importance of involving parents as partners.

Many professionals have yet to embrace the concept of families as partners and fail to recognize the importance of family involvement. According to Friesen and Stephens (1998), the movement to expand family roles, decision-making, and control has outstripped professional training and practice. Proposed solutions include modifying professional training curricula within universities to reflect the new way of viewing families as well as providing continuing education for direct service workers (Stroul et al., 1996).

The Institute for Family Centered Care published Essential Allies—Families as Advisors, a practical educational guide designed to be a bridge the gap between providers’ traditional education and training and the newer expectations to develop true partnerships with families (Jeppson & Thomas, 1995). Essential Allies provides numerous guidelines and suggestions for successfully involving family members on boards, task forces, and committees.

• Educate family members on how to participate in the policymaking process.

Family members need assistance in understanding how the policymaking process works and how to exert influence on decisions that are made. An example of a guide designed to educate families is Parents as Policy-Makers—A Handbook for Effective Participation published as part of the Portland State University Research and Training Center’s Families in Action Project (Hunter, 1994).

Family members can also benefit from developing abilities that enhance effective participation in the system, such as leadership skills, perseverance and resilience, and complex problem solving skills (Peer Technical Assistance Network, 1998).


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• Encourage both family members and professionals to develop collaboration skills. DeChillo, Koren, and Mezera (1996) suggest that professionals need to include skills related to collaboration into their training, including: the ability to promote inclusion of a wide variety of stakeholders, the flexibility to work with a broad array of service options and possibilities, and the capability of considering a range of issues that are made more complex because of the addition of multiple viewpoints and opinions. The Research and Training Center at Portland State University has actively promoted the concept of parent-professional collaboration through various research and training activities, beginning with the Families as Allies Project (Vosler-Hunter, 1989).

Parents who participated in the Families in Action Project conducted by the Portland Research and Training Center offered the following suggestions for encouraging parents to participate in policymaking (Koroloff et al., 1994; Vosler-Hunter & Hanson, 1992).

• Recruit parents who are angry and encourage them to redirect their emotions;

• Emphasize potential benefits to family members (e.g., participation may increase placement opportunities for their own child);

• Be responsive to parents who express interest in joining;

• Develop a written outreach plan;

• Overtly recognize the value of family members; and

• Provide an orientation and training for new members.

Examples of Family Advocacy Efforts Despite the difficulties families face in participating in decision-making at the system level, families have begun to make inroads in impacting policy. Families and family advocacy groups have found success with various tools and approaches, including legislation and changing administrative rules as well as filing grievances and lawsuits. (Koroloff, Friesen, Reilly, & Rinkin, 1996) Profiles of statewide family advocacy projects funded by CMHS between 1988 and 1993, including descriptions of their experiences with influencing policy change, are documented in three reports published by the Research and Training Center on Family Support and Children’s Mental Health at Portland State University (Koroloff, Stuntzner-Gibson, Friesen, 1990; Briggs, Koroloff, Richards & Friesen, 1993; Briggs, Koroloff, & Carrock, 1994).


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Examples of family impact on decision making and policy change revealed in the literature include:

• Families First in Essex County, NY Familes First is one of the most well-established, family-designed systems of care operating in the U.S. The Families First program was initiated in 1992. Parents were invited to participate on a Parent Planning Committee. The Committee took recommendations from interviews with parents, designed a system of services, and made specific recommendations for implementation. Families First initiated a number of forums for interagency networking, and parents play a central role in each of these forums. (Tannen, 1996a, Tannen, 1996b).

• Family Voices—Families in Program and Policy Project Family Voices is a national grassroots network of families and advocates for health care services and supports partnerships between families and professionals. Family Voices is conducting the Families in Program in Policy Project to collect and report information on family participation within state Maternal and Child Health (MCH and Children with Special Health Care Needs (CSHCN) Programs. This project builds upon previous research (Wells, Anderson & Popper, 1993) and information collected through MCH Block Grant reporting requirements.

Preliminary results of the research (Anderson, 2005, Anderson & Wells, 2003) suggest that family participation is relatively strong within the CSHCN program, and is greater than the level reported within the MCH program. Among the CSHCN staff interviewed, all said that families were either “involved in most” (57%) or at least “occasionally involved” (43%) in program and policy activities. The level of family participation on committees, task forces, and groups within CSHCN was estimated at over 70 percent. Families contributed in several ways, most commonly by expressing family concerns. A complete report, with conclusions and recommendations, will be available from Family Voices within the first half of 2005.

• Oregon Family Support Network (OFSN) The Oregon Family Support Network (OFSN) is an advocacy and support group of caregivers of children with serious emotional problems. Through collaborative efforts driven by OFSN’s board chair (a mother), House Bill 3577, the Voluntary Child Placement Agreement, was created to allow caregivers to voluntarily place their children in out-of-home care without giving up custody (Cross & Friesen, 2004; Friesen, Giliberti, Katz-Leavy, Osher & Pullman, 2003).


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• Wisconsin Family Ties Wisconsin Family Ties (WFT) was established in 1987 and was one of five original pilot projects through the Portland Research and Training Center. In 1989, WFT played a major role in advocating for the passage of legislation that created Integrated Service Counties throughout Wisconsin, each of which is required by law to establish a Coordinating Council for implementation oversight. WFT hires and recruits parent consultants to work with the Integrated Service Counties (Katz-Leavy, Tannen, & Mancini, 1994).

• Mississippi “Families As Allies” The Mississippi Families As Allies program was formed in 1990 and was one of the first 15 contracts awarded by CASSP. Mississippi FAA works as part of a coalition of state legislators and agency officials as well as helping other advocates. In 1993, they passed a Child Mental Health Bill which mandated an interagency agreement to pool funds for children and adolescents with serious emotional problems (Katz-Leavy, Tannen, & Mancini, 1994).

• Kansas “Keys for Networking”

Keys for Networking was formed in 1988 for the purpose of providing information, training, and technical assistance to local parent support groups, assistance to families in crisis, case advocacy, and representation of Kansans families at state-level advisory and policymaking meetings. The group assisted in the establishment of a state-funded position devoted to the mental health needs of children and adolescents, and was involved in adding children and adolescents to a bill establishing mental health boards throughout the state (Friesen & Huff, 1990).

• Rhode Island

In 1995, a special task force comprised of parents, advocates, legislators, and administrators developed a legislative amendment designed to clarify and correct a statute that required families to relinquish the custody of their children in order to receive necessary out-of-home placement services. The legislation was well-received and enacted into law in 1996 (Focal Point, 1998).

• Vermont

In 1998, a comprehensive and expansive mental health and substance abuse parity bill was signed into law. Groups including the Vermont Alliance for the Mentally Ill, the Vermont Federation of Families for Children’s Mental Health, and Vermont Psychiatric Survivors were active participants in the hearings for the bill and assisted in moving the bill to passage (Focal Point, 1998). Also in Vermont, Parent to Parent, a statewide nonprofit organization, and the University of Vermont have worked together to develop two model programs that enable families to participate in the training of professionals who serve children with special needs (Bronheim, Keefe, & Morgan, 1998).


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• Finger Lakes Family Support Program Family members screen and train respite providers, have decision making authority over a portion of the budget, and make day-to-day decisions about the program (Friesen & Huff, 1996).

• Virginia “Parents and Children Coping Together (PACCT)”

Parents and Children Coping Together (PACCT) was formed by a father in 1985 as a support group for parents of hospitalized children and has grown into an umbrella organization for support groups and advocacy. The leadership of parents and advocates within PACCT has led to the inclusion of parents by law on all state and local teams implementing systems reform in Virginia (Macbeth, 1996).

Conclusions Significant progress has been made in involving family members in decision making at the service delivery level and, less consistently, at the policy making level, in many communities. Despite this progress, there is still much to be done in terms of involving families in all levels of decision making within systems of care. Numerous barriers to family participation in decision making have been identified and need to be overcome, and professionals need to be educated on the importance of collaborating with families and involving them as equal partners. Studying the examples of systems of care where families have had successes in shaping policy may provide guidance for modifying systems of care that are seeking to increase family involvement in systems change. Specific strategies for involving families will need to be adapted and customized to fit the stakeholders involved in individual systems of care.


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Methodology Sampling and Data Collection A purposive sampling technique was utilized, where an attempt was made to recruit respondents who reflected a representative range of attitudes and behaviors. A total of 40 interviews were conducted, distributed as follows: Families Professionals Chairpersons Total Bloom Aurora 4 4 1 9 Bloom El Paso 3 5 1 9 Bloom Mesa 2 2 1 5 Blue Ribbon Policy Council 3 2 1 6 MHPAC 2 3 1 6 Together We Can 1 3 1 5 Total 15 19 6 40

Sample Description The professionals who participated in the study were administrators with various levels of authority in a variety of mental health organizations. Five of the professionals and chairs were also family members. Family members were predominantly female, white, middle-aged and of various educational backgrounds and income levels. Two of the family member respondents were also professionals. Survey Instruments Family members, professionals, and chairpersons were interviewed using different questionnaires. Each questionnaire was comprised primarily of a series of rating scales and open-ended questions. The rating scale questions were based on work done by the Research and Training Center on Family Support and Children’s Mental Health at Portland State University. Most of the questions focused on the level and nature of consumer and family member participation within each group and the effect such involvement had on the groups themselves and on the professionals within the groups. (See Appendix for copies of the questionnaires.) Interviews Interviews were conducted both in person (30) and over the phone (10). Interviewing began in April, 2005 and was completed in June, 2005. Family members were provided with a $25 cash incentive to participate. On average, interviews were one hour in length for family members, 40 minutes for chairpersons, and 30 minutes for professionals.


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Caveat Because the sample sizes are small, this research should be considered qualitative rather than quantitative. Caution should be used when generalizing the results beyond the sample of respondents that were interviewed.

Tabulation Because of the small sample sizes, responses are not typically broken out by group. Differences by group are noted when relevant. Responses for professionals and chairpersons were combined when possible, as many of the questions were identical. Quotes are used liberally throughout the Detailed Findings section of this report to enhance understanding of the results.

Observation of Meetings The senior analyst attended meetings of all of the groups except Together We Can.


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SUMMARY OF FINDINGS

1. Family Members

How respondents became members of their groups • Most respondents became members of their groups via word of mouth—from other

group members, members of the Federation, or from members of other organizations.

Participation within groups • Roughly two-thirds (67%) of the respondents said they were “very active” (60%) or

“moderately active” (7%) group members. Respondents participated within their groups in a variety of ways, with attending meetings and being involved in subcommittees or workgroups being the most common. Work and childcare responsibilities hindered some respondents from participating actively.

• Most respondents said they “always” (47%) or “frequently” (27%) attended group

meetings. Personal and work issues kept some respondents from attending meetings more often.

• Within group meetings, respondents said they were more likely to enter into

discussions or accept responsibility for tasks compared to other behaviors, such as presenting draft position statements for the group to review or introducing topics under new business.

• More than half of the respondents (60%) said they participated in one or more

subcommittees or subgroups of the main group. Often respondents were members of multiple subgroups. Reasons for not participating related to lack of time, childcare responsibilities, and personal characteristics.

• Roughly two-thirds of the respondents (67%) said they had never held a leadership position within the group, typically because they did not have the resources to deal with additional responsibilities.


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Support offered by group to enable participation

• The most common form of support offered by groups to enable participation was travel reimbursement for meetings (73%) followed by child care/respite care (67%), payment for time and services (47%), and (usually informal) mentoring (40%).

• About half of the respondents (47%) said they were “very satisfied” with the

support that was available to them to participate in their groups, although satisfaction levels varied widely. Some respondents would have preferred reimbursements that didn’t affect their existing benefits.

• Respondents suggested a variety of ideas for additional support that would make it

easier for them to attend meetings or participate in subgroups, including on-site child care, stipends for time, and gas cards or gift cards. One-third (33%) of the respondents had no requests for additional support.

Perception of importance of work done by groups • Universally, respondents agreed that the work done within their groups was “very

important.”

Within MHPAC and the Blue Ribbon Policy Council, respondents expressed the belief that their groups play an important role in shaping mental health policy.

Respondents within Project Bloom and Together We Can emphasized their

groups’ ability to help with early intervention, resource identification, and networking.

Importance of having a say in group decisions • The vast majority of the respondents (87%) said it was “very important” for

them to have a say in group decisions. As family members, they believe they offer a unique and valuable perspective on how the system affects them and how things need to be changed. Some respondents expressed the belief that system change was not possible without the input of consumers and family members.

Perceived influence in group meetings • The great majority of respondents said they were “very satisfied” (47%) or

“somewhat satisfied” (40%) with the influence they are able to have in group meetings. Some of the respondents who were less than “very satisfied” with their influence observed that meetings were not as consumer or family-driven as they would like them to be.


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• Most respondents said they had “some” (60%) or “a lot” (20%) of influence on group decision making.

• Roughly two-thirds of the respondents (67%) believed they had the same amount of influence as others in their groups. Reasons for feeling less influential than others related to perceived lack of skills and inability to focus on what was happening in the meetings.

Responsiveness of group • Approximately two-thirds of the respondents (67%) said their groups were “very

responsive” to the issues raised by consumers and family members. • Recommendations made by consumers or family members were accepted

“regularly” (53%) or “often” (20%) according to most respondents.

Perceived impact on programs and policies

• Most respondents said they were “very satisfied” (27%) or “somewhat satisfied” (53%) with their ability to impact group programs and policies. Those who expressed satisfaction said their groups were receptive and open to listening to families and provided them with positive feedback. Respondents who were less satisfied described structural and budget limitations that affected their ability to make changes, and the reluctance of some professionals to relinquish control.

• The great majority of respondents (80%) were able to identify some way in which

they believed they had an impact on their group’s programs and policies. Specific examples include: Conceived the idea of a paid Family Involvement Coordinator position—

communicated the need and brought the idea forward to the Executive committee and convinced the group to establish it. (Bloom El Paso County)

Conceived the idea and convinced the group to establish a Family Support Group. (Bloom Aurora)

Helped get family members reimbursed for their time. (Bloom El Paso County)

Helped get family members paid for travel. (MHPAC)

Helped write a job description for a Wraparound facilitator. (Bloom Mesa County)

Communicated to professionals the need for parent inclusion in the Wraparound process. (Bloom Mesa County)


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Helped to open up the age requirements for Project Bloom families. (Bloom Aurora)

Participated as part of interviewing committee. (Bloom Mesa County)

Helped to reinstitute and reshape the mentoring program. (MHPAC)

Pushed for childcare to be included in the new Family Support Group. (Bloom Aurora)

Recommended that a particular advocate was not appropriate for the needs of Bloom members and influenced the outcome. (Bloom Aurora)

Spearheaded a t-shirt/social marketing project—presented idea, got approval for funding, and got the project done. (Bloom Aurora)

Had extensive input into the wording of a portion of the block grant for the Colorado Division of Mental Health. (MHPAC)

Group accomplishments and how consumers and family members contributed

• In almost all cases, respondents were able to identify accomplishments made by their groups and were able to articulate how they contributed to those accomplishments.

Bloom Aurora

Established a new Family Support Group

Family members made contacts, wrote guidelines, identified funding sources, obtained funding, helped determine how the group would operate, voiced opinions, helped write the proposal.

Established a Youth Group

Family members provided ideas and support.

Promoted ongoing collaboration and decision making between agencies and families

Family members attend LCGT meetings and actively participate in discussions, ask for better communication, and vote on decisions.

Developed a Wraparound process

Family members voiced their opinions and shaped the final process.

Increased awareness of Bloom and early childhood mental health

Family members distributed brochures and cards to primary care physician’s offices, daycare centers, and other locations.


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Bloom El Paso County

Created a Project Bloom brochure to be distributed at doctors’ offices

Family members conducted research and contributed to the content.

Developed a Wraparound process

Family members participated in training and promoted the idea to professionals.

Increased awareness of the system of care concept within the community

Family members attended system of care collaborative training, and share system of care concepts with families and professionals.

Communicated the importance of the family voice to families and professionals

Family members participated on committees, met with other families and encouraged them to provide feedback to the system, called other family members and invited them to participate in meetings.

Increased awareness of the importance of children’s mental health

Family members communicated with professionals and other family members through work on committees, participation in outreach efforts, and participation in training.

Bloom Mesa County

Promoted ongoing collaboration among agencies and families with the community

Family members actively participate in meetings.

Hired a therapist

Family members participated in a subcommittee and reviewed and evaluated applications.

Made progress towards hiring bilingual translators

Family members participated in discussions where the need for translators was brought up, and volunteered to develop the ideas further.

Introduced the concept of Wraparound training to professionals

Family members participated in Wraparound facilitator training and communicated the family perspective.


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Support for children and families enrolled in Bloom

Family members helped compile the names of counselors who would see children enrolled in Bloom.

Blue Ribbon Policy Council

Brought together a range of appropriate players together along with families

Family members have acted as a family voice and have actively participated in group discussions.

Made progress towards identifying legislation that needs to change

Family members have participated on committees, attended outside meetings, and done some planning.

Made progress towards planning state mental health policy

Family members have provided a family voice within committees.

Started a system of care collaborative

Family members actively participated in group meetings and supported the idea.

Mental Health Planning and Advisory Council

Got money reinstated to the mental health budget/prevented further budget cuts

Family members participated in discussions, conducted research, disseminated information to families, and voted on letters.

Designed the children and family section of the block grant

Family members participated in discussions and influenced the wording.

Increased awareness of issues of other family members

Family members participated in discussions, disseminated agendas, minutes, decisions, and topics of concern to family members.

The Council provides support for the consumer and family movement in Colorado

Consumers and family members recruit and nominate others.

Made governor and legislature aware of the importance of funding mental health services

Family members voted “yes” or “no” on letters drafted by someone on the Council, usually the Chair.


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Perception of attitudes of professionals towards consumer and family participation • Almost all of the respondents said that professionals were “generally positive”

(67%) or “somewhat positive” (27%) towards consumer and family member participation. Respondents cited positive behaviors such as soliciting and acknowledging feedback from family members, sharing personal experiences, showing respect, and being open to and taking suggestions.

• Some respondents had a mixed view of professionals and were unable to evaluate

them as one homogeneous group.

Satisfaction with ability to impact professionals’ attitudes or behaviors • Most respondents said they were either “very satisfied” (53%) or “somewhat

satisfied” (27%) with their ability to impact professionals’ attitudes or behaviors. Feedback, both verbal and non-verbal, as well as observed behavior reinforced the feelings among some family members that they had an impact on professionals.

Influence on how mental health services are delivered

• The majority of respondents were unable to share examples where consumers or family members within their groups influenced how mental health services are delivered. Family members within Bloom Mesa County, Bloom Aurora, and MHPAC were able to specify a few instances—the Wraparound facilitation process, relaxing the Bloom admission criteria, and the wording of the Child and Family portion of the Colorado Community Mental Health Services Block Grant.

Training on policy making

• Roughly two-thirds (67%) of respondents said they had not been provided with training on policy making.

Additional thoughts on family involvement • When asked if they had any additional thoughts on family involvement that

they would like to express, respondents emphasized the following themes:

The importance of family involvement.

The need for more families and consumers to be involved.

The difficulties families have in participating in decision making and the need for training and support.

The fear families have of increased scrutiny and potential retribution.


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2. Professionals

Participation of consumers and family members within groups • Most respondents said consumers and family members were “very active” (44%) or

“moderately active” (44%) in group decision making. • Over half of the respondents said they were “somewhat dissatisfied” (56%) with the

number of consumers and family members that attend group meetings. Respondents reasoned that consumers and family members had difficulties attending meetings due to lack of time, scheduling, crises at home, and the stigma of identifying with mental health issues.

• In some groups, respondents observed that some professionals in their groups were

also consumers or family members who did not identify themselves as such.

• The majority of respondents were “very satisfied” (52%) or “somewhat satisfied” (28%) with the level of participation of the consumers and family members that attend meetings. Respondents who were less than “very satisfied” said that at times consumers and family members vented their frustration with system issues the group did not have control over, or did not have a complete understanding of system issues. Some respondents observed that some family members participated more actively and consistently than others.

• Most respondents were “somewhat dissatisfied” (48%) or “not at all satisfied” (8%)

with the number of consumer and family members that participated in subcommittees or subgroups. Some respondents observed that consumer and family members are not distributed evenly across subgroups.

• The majority of respondents were “very satisfied” (44%) or “somewhat satisfied”

(36%) with the level of consumer and family member participation in subcommittees or subgroups. Several respondents observed that consumers and family members don’t always feel comfortable speaking up. Family members who were also mental health professionals created a problem with role confusion for some respondents.

Importance of consumer and family involvement to success of groups • All of the respondents said consumer and family involvement was either “very

important” (84%) or “moderately important” (16%) to the success of their groups. • Frequently respondents said that consumer and family involvement was critical to

understanding needs and identifying system barriers. Consumer and family involvement also provided direction and guidance for their groups.


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Responsiveness of group and influence on group decision making • The vast majority of respondents said consumers and family members have “some”

(56%) or “a lot” (40%) of influence on group decision making. Some respondents volunteered that consumers and family members would have a greater influence if they had a better understanding of system rules and regulations, and were better able to communicate

• Most respondents said recommendations made by consumers and family members

were accepted “regularly” (40%) or “often” (28%). Some respondents said that they infrequently received recommendations, but when they did, they tended to be accepted.

• The great majority of respondents said their group was “very responsive” (48%) or

“moderately responsive” (40%) to issues raised by consumers and family members.

Examples of consumer and family member influence in decision making by the group or on programs or policies • Respondents were able to offer a variety of specific examples of the influence that

consumers and family members had on decision making by the group or on the group’s programs or policies. Respondents said consumers and family members:

Bloom Aurora Helped develop Flex Funds guidelines.

Identified the need for and were the driving force behind the creation of a Family Support Group.

Assisted in shaping and implementing the logic model

Helped plan Wraparound services.

Regularly influence how documents are worded and presented

Bloom El Paso County Identified the need for and defined the requirements for a paid Family

Involvement Coordinator position.

Influenced decision to train family members as Wraparound facilitators.

Influenced the use of DC-03 as a diagnostic tool.

Helped structure the stipend offered to families.

Influenced group to agree to use common language without acronyms


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Bloom Mesa County Identified the need for a parent Wraparound facilitator position, pushed the idea

forward, and helped write the job description.

Regularly make decisions by actively serving on a committee that works on organizational and structural issues.

Had input into services included in Flexible Funds.

Blue Ribbon Policy Council Influenced and approved the content of a funding matrix.

Helped identify and prioritize areas for focus.

MHPAC Influenced the wording of Medical Services Board rules.

Identified protections needed for behavioral healthcare within systems of care.

Took the lead on influencing group’s position on the HIFA waiver.

Influenced the shape and content of the Medicaid capitation RFP.

Educated legislators and influenced various pieces of legislation.

Kept rural and other diversity issues at the forefront of discussions.

Together We Can Had input into a fact sheet used to prepare family members to deal with Social

Services.

Helped establish priorities and provided direction regarding schools and after school programs.

Got the school coalition involved in meetings.

Supported movement towards a system of care model.

Influenced police policy relating to kids who run away

Impact of family involvement on professionals • Respondents were asked what impact, if any, consumer and family participation had

on them. Responses related to:

Increasing empathy.

Creating and refreshing awareness of how the system impacts families and what needs to be changed.


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Making abstract policy concepts concrete.

Increasing awareness of issues important to families.

Increasing awareness of underserved families.

Shifting orientation towards a system of care model.

Taking action on the job to solve consumer and family problems or recommend policy stances.

Changing jobs and moving to a more family-oriented agency.

Examples of consumers or family member influence on opinions or attitudes towards issues • Respondents offered a variety of examples how consumers or family members

impacted their thinking. Examples include being:

Less quick to judge family members or situations.

More understanding of the challenges and issues facing families.

More understanding of system issues and how they impact families.

More supportive of a system of care model.

Examples of consumer and family member involvement and influence on decisions made or actions taken • Respondents said consumer and family member involvement influenced them to

make decisions or take actions in a variety of specific ways. Examples include:

Allocated money from their budget to help fund a Family Involvement Coordinator position. (Bloom El Paso County)

Influenced the decision to recommend the hiring a particular therapist because of her family-oriented skills. (Bloom El Paso County)

Introduced idea of the Caregiver Alliance Toolbox, a computer program designed to share records electronically among providers, to the chairperson after hearing a family member share her experiences. (BRPC)

Applied for a grant after being sold on the idea by family members. (Together We Can)

Supported family member recommendations on the shaping of the Family Support Group (Bloom Aurora)

Supported family member recommendations to hire a Wraparound facilitator as an agency employee rather than a contract employee (Bloom Mesa County)


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Supported family member recommendations on positions on system of care and HIFA waiver issues. (MHPAC)

Elevated a couple of specific system issues to a priority level and took action to look for opportunities to solve problems. (MHPAC)

Continued a support group for foster families beyond the requirements of a grant. (Together We Can)

Solicited family member input and incorporated it into training and resource materials (BRPC)

No longer use acronyms and are more sensitive to language. (Bloom El Paso County)

Prioritized budget issues within the Legislative and Budget Council. (MHPAC)

Shared with supervisor a parent’s perspective that services are not coordinated. (BRPC)

Offered to help problem-solve with individuals on their personal issues after meetings. (BRPC, MHPAC)

• In some cases, respondents observed the problems families in their groups had

in dealing with the system and came up with solutions. Examples include:

Established a team to support children and integrate all of their behavior plans from different agencies, and ensured that a full diagnostic workup was part of the process. (Bloom El Paso County)

Helped make Flex Funds available as petty cash to help families with insurance co-payments. (Bloom El Paso County)

Influenced local mental health center to make exceptions for Bloom family members with insurance problems. (Bloom El Paso.)

Changed the process of introducing a Wraparound facilitator to the family, using the Bloom Care Coordinator as a bridge. (Bloom El Paso County)

Examples of consumer and family involvement and impact on professional practice or job • Respondents were asked if they could share examples of where a consumer or

family member had an impact on their professional practice, the way they delivered services or the way they did their job. Some respondents said consumer and family members shape their overall attitudes and approach towards families by providing them with a better understanding of their situations. Others said that they have become less judgmental and less quick to assume the worst.


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• Some respondents offered specific examples of actions they took at work that were motivated by consumer and family involvement:

Streamlined the Wraparound process for families. (Bloom El Paso

County)

Clarified boundaries and roles for Wraparound facilitators. (Bloom Aurora)

Increased the implementation of Wraparound services. (Together We Can)

Changed survey methodology for collecting feedback from families. (Bloom El Paso County)

Bloom families learned about resources and shared this information with other families. (Bloom Mesa County)

Recommended policy changes, including those related to the grievance process and budget, to his membership organization. (MHPAC)

• One respondent was motivated to initiate a major system change based on feedback from a family member on the issue of the stigma attached to visiting a mental health professional versus a medical doctor.

Examples of how consumers or family member influenced how mental health services are delivered • Most respondents were unable to share examples of how consumer and family

involvement had influenced how mental health services are delivered. Several respondents, however, were expressed hope that current activities would lead to an impact on the system over the long term.

• A few respondents offered specific examples of how consumers and families had impacted the system or may influence it in the future:

Consumers and family members influenced the design of the Medicaid

benefit package. (MHPAC)

Parents have participated on a committee that has helped make the system easier to navigate by creating a single point of entry into the system. (Bloom Mesa County)

A family member is participating on the planning committee for a new children’s hospital that is incorporating behavioral healthcare. (Bloom El Paso County)


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Disadvantages, if any, of involving consumers and family members in decision making. • When asked if involving consumers and family members in decision making

presented any disadvantages, some respondents acknowledged that it can be challenging when consumers and family members don’t have a full grasp of the system and the limitations of what the group is able to do, are dealing with mental health issues of their own, are preoccupied with family crises, or are lacking in communication skills.

• Many respondents emphasized that the advantages of incorporating consumer

and family involvement in decision making outweighed any disadvantages there might be.

Additional thoughts on family involvement • When asked if they had any additional thoughts on family involvement that

they would like to express, respondents emphasized the following topics:

The importance of consumer and family involvement.

The need for more families to be involved at a consistent level.

The opportunities available to get parents more involved and the family voice heard.

The challenges involved in building trust and being comfortable enough to share information openly.

Understanding the time and commitment it takes to forge relationships and incorporate family involvement.

The need for dedicated staff and technical assistance to promote family involvement.

The need for education about systems.

The need to support consumer and family involvement in underserved populations—rural and ethnic.

The need for sustainable, in-home delivery of services within systems of care.

The need to focus on preventative services for children at risk

The challenges presented by some group members playing multiple roles.

Pride in what has been accomplished so far.


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3. Chairpersons

Composition of organizations—percent of consumers and family members

The percent of consumers and family members within each of the organizations ranged from 20% (Bloom El Paso County) to 52% (MHPAC).

Distribution of members that regularly attend meetings Most group members that regularly attend meetings are professionals. Consumers and

family members comprise between 10% (Bloom El Paso County) and 45% (Together We Can) of the group members that regularly attend meetings.

The percent of the total consumer and family membership that regularly attend

meetings ranges from 50% to 90%. Percent of total consumer and family membership that serve on boards or subcommittees • The percent of the total consumers and family membership that serve on boards or

subcommittees varies widely by group

Support offered to consumers and family members • The kinds of support offered to consumers and family members to enable them to

attend meetings varied by group. Most of the groups reimbursed families for child care, their time, and travel expenses. Only one group, MHPAC, offered formal mentoring.

• Additional kinds of support needed to enable consumers and family members to

attend meetings and participate in the group include:

More formalized mentoring in groups not currently offering it. A community-wide Family and Youth Involvement Coordinator A revised training program for new members A 24 hour help line

Level of involvement of consumers and family members in specific activities • The level of involvement of consumers and family members by activity varied by

group. In general, consumers and family members were less active in “research about children and families” than they were in other activities.


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Steps taken to involve consumers and family members in decision making

• All of the groups have taken steps to involve consumers and family members in decision making, primarily by inviting them to meetings where decisions are made, encouraging discussion, and providing an equal vote.

Contributions to group accomplishments

• Each chairperson identified accomplishments made by their groups and described how consumers and family members contributed to those accomplishments.

Bloom Aurora

Established a new Family Support Group

Family members came up with the idea, did a lot of the legwork in planning it, and most will participate in it.

Have begun to enroll families in services

Family members reviewed informational material so that it included the right language and helped design a referral flowchart for services. Family members have attended Wraparound training, sit on the Wraparound Council, and review services.

Hired a Youth and Family Coordinator, and developed a workgroup for youth and families.

Family members approved the job description and tasks, participated in interviews, and have input into supervision of positions. Families serve on the workgroup, developed a workplan, and help to carry out the workplan.

Provided outreach to childcare settings to support children with mental health needs

Family members approved the idea.


Established training initiatives around DC 0-3, Wraparound, Decca, and outreach training relating to systems of care and Bloom.

Family members have assisted with some training, help do presentations to community partners, and have been trained to be Wraparound facilitators.


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Restructured Alliance for Kids to align with the state systems team to incorporate system of care principles and to become the early childhood system of care infrastructure.

Family members participate in all meetings and helped to develop bylaws for Alliance for Kids.

Creation of the Bloom Care Coordinator position

Family members participated in committee meetings.

Bloom Mesa County

Increased awareness within the community of the importance of social and emotional well being of children and families

Family members participated in meetings where advertising and public relations was discussed.

Provided ongoing training with DC-03, NCAST, and Incredible

Years, and convinced the state and the funders of Bloom to allow DC-03 to be a diagnostic tool to allow kids into Bloom.

Family members help with word of mouth dissemination of information.

Began implementing the Wraparound process, within Bloom and

within the larger system.

Family members were trained in Wraparound facilitation, participate in advocacy, outreach, and education, and participate in meetings where decisions are made.


Identified and prioritized areas for focus, formed committees, and established and built upon existing workgroups.

Family members and consumers presented local issues to the group Agencies and family members agreed upon a funding matrix.

Family members participated in a workgroup that examined the matrix, and provided input on funding priorities.

Attracted an influential mix of people to participate on the Council.

Family members made suggestions as to who needed to be a part of the Council.


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Had a national organization publish an article on the BRPC which helped generated public awareness of children’s mental health issues.

Family members participated in a full Council meeting and provided feedback on the article before it was published.

Mental Health Planning and Advisory Council

Wrote the three-year mental health block grant plan for Colorado.

Consumers and family members provided the written language and were involved in providing feedback and performance measures.

Focused energy on system transformation efforts in supporting the federal grant application.

Consumers and family members have spent time outside of the Council, attending additional meetings to identify opportunities for system change to benefit system delivery. Some have volunteered to write and edit pieces.

The Council is working together as a whole, treating each other

with respect during discussions with diverse perspectives.

Consumers and family members expressed how difficult some of the group processes have been on them in the past. Voicing concerns raised sensitivity and increased awareness of the value of different perspectives.

Together We Can

Got community organizations and agencies to the same table to talk

Parents said we need to do something in our community—parents and families drive the directions we go.

Received a Family to Family grant

Parents took the lead in applying for the grant.


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4. Observation of Meetings The following are some of the conclusions drawn from these observations.

• Both family members and professionals have different levels of involvement with these organizations. Some are highly committed and energetic and some are less so. For family members, the level of engagement depends on their circumstances. If they are facing challenges with their children, they have less energy to devote to meetings and projects.

• Project Bloom (Aurora, El Paso County and Mesa County) and Together We

Can are focused on issues at the service level while the Blue Ribbon Policy Council (BRPC) and the Mental Health Planning and Advisory Council (MHPAC) are focused on higher-level policy issues.

• The groups are at different points in their development. MHPAC has been in

existence for more than a decade, while the remaining groups average about three years of age.

• MHPAC, Bloom Mesa County, Bloom El Paso County, and Together We Can

have professionals who are also family members in key leadership positions.

• Bloom Mesa County is more geographically isolated than other groups. Most of the professionals and family members have known each other for years through various organizations. There is an obvious ease and comfort level among both professionals and family members in the group.

• Many of the family members within Bloom Aurora and Bloom Mesa County

are extremely close and tightly-knit and communicate with each other outside of meetings.

• Family membership within Bloom El Paso County and Together We Can is

more transient than it is with other groups. Both groups have a only a few committed family members who regularly participate.

• MHPAC and BRPC meetings are larger and more formal than others, and are

attended by high-level policy makers.

• Family members and consumers represented the minority of attendees at the meetings observed, but almost all were active participants and were treated with respect. In many cases, consumer and family member input was actively solicited.


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DETAILED FINDINGS

1. Family Members How respondents became members of their groups Most respondents became members of their groups via word of mouth—from other group members, members of the Federation, or from members of other organizations. Table 1: How respondents became group members (Q1.)

N Percent Word of mouth—another member 6 40% Word of mouth—Federation 3 20% Word of mouth—another organization 2 13% Presentation by chair, email from BHI 1 7% Flyer at health center 1 7% Other 1 7% N/A 1 7% Total 15 100%

Activity level within group Roughly two-thirds (67%) of the respondents said they were “very active” (60%) or “moderately active” (7%) group members.

Table 2: Activity level within group (Q5.)

N Percent Very active 9 60% Moderately active 1 7% Slightly active 4 27% Not at all active 1 7% Total 15 100%


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Ways respondents have participated within the group Respondents participated within their groups in a variety of ways, with attending and participating in meetings and being involved in subcommittees or workgroups being the most common. Table 3: Ways respondent has participated (Q5A.)—Unaided responses

N Percent Attended and participated in meetings 12 80% Participated in subcommittees, workgroups 9 60% Participated in Wraparound facilitation 2 13% Participated in focus groups 1 7% Attended conferences 1 7% Attended training 1 7% Spearheaded Family Support Group 1 7% Evaluated RFPs 1 7% Helped develop brochure 1 7% Translated documents into Spanish 1 7% Not active/less active than before 3 20%

Percentages add up to more than 100% due to multiple responses.

Reasons for not participating actively within the group Work and childcare responsibilities hindered some respondents from participating actively. “Now that I’m working, I can’t attend meetings. My son requires a lot

of time and energy. I like to spend time with my son in the afternoons and evenings.”

“There is a time issue given my kids’ needs and my work. We are just

now working ourselves back into having more time. Their meeting times were inconvenient for my work.”


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Frequency of attendance at group meetings Most respondents said they “always” (47%) or “frequently” (27%) attend group meetings.

Table 4: Frequency of attendance at group meetings (Q8.)

N Percent Always 7 47% Frequently 4 27% Occasionally 1 7% Seldom 3 20% Never 0 0% Total 15 100%

Respondents who attended meetings less frequently than others cited reasons relating to issues in their work and personal lives:

“I was attending every meeting until my child started going to school.” “I have a new job and a major change in my personal life. I’m not as active as I’d like to be.” “I used to go to all of them until I started working.”

Participatory behavior within group meetings Within group meetings, respondents said they were more likely to enter into discussions or accept responsibility for tasks compared to other behaviors, such as presenting draft position statements for the group to review or introducing topics under new business.

Table 5: Participatory behavior within group meetings (Q9.)

Regularly Often Sometimes Never

Enter into discussions 73% (11)

13% (2) 13% (2) --

Place items on the agenda 13% (2) 7% (1) 33% (5) 47% (7) Introduce topics under new business 7% (1) 20% (3) 33% (5) 40% (6) Make formal motions 13% (2) 20% (3) 47% (7) 20% (3) Present draft position statements for the group to review

7% (1) -- 20% (3) 73% (11)

Disagree with others, including professionals

13% (2) 13% (2) 67% (10) 7% (1)

Accept responsibility for a task 60% (9) 13% (2) 20% (3) 7% (1)


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Participation on boards, subcommittees, or in other subgroups More than half of the respondents (60%) said they participated in one or more subgroups of the main group. Often respondents were members of multiple subgroups.

Table 6: Participation in subgroups (Q11.)

N Percent Yes, 1 group 2 13% Yes, 2-4 groups 6 40% Yes, 5 or more groups 1 7% Yes (subtotal) 9 60% No 6 40% Total 15 100%

Those respondents who did not participate on boards or in subgroups (40%) cited reasons relating to lack of time, childcare responsibilities, and personal characteristics.

“I don’t care to do stuff like that. I’m not good at standing up for myself. I am not outspoken.”

“I’m learning a new job and anything more than the monthly task force meetings are just too much.”

“I can’t leave my son. The LCGT meetings had daycare—the other groups don’t have it. Daycare made it easier.”

Whether or not respondent ever held a leadership position within the group Roughly two-thirds of the respondents (67%) said they had never held a leadership position within the group.

Table 7: Whether ever held leadership position (Q12.)

N Percent Yes 4 27% No 10 67% Other 1 7% Total 15 100%


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Reasons for not taking on a leadership position related to not having the resources to deal with additional responsibilities.

“I work nights and for awhile had two jobs. It’s hard to take on another responsibility.’ “It’s too much responsibility for me.” “At this point, because I work full time and am active in the Federation and have two special needs children—I have no time. I would only offer myself if I could give 100%.” “I’m just getting out of chaos within my own family and finding my role.”

Kinds of support offered by group to enable participation

The most common forms of support offered by groups to enable participation was travel reimbursement for meetings (73%) followed by child care/respite care (67%), payment for time and services (47%), and (usually informal) mentoring (40%).

Table 8: Kinds of support offered by group (Q13.)

N Percent Travel reimbursement for meetings 11 73% Child care/respite care (inc. stipend)* 10 67% Payment for time or services (inc. stipend) 7 47% Mentoring** 6 40% Other: food, snacks 6 40% Other: phone, supplies 3 20% Other: conference attendance 1 7%

*Two of the respondents said that for some meetings on-site childcare was available. **Four of the respondents said that the mentoring was informal.


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Satisfaction with support offered

About half of the respondents (47%) said they were “very satisfied” with the support that was available to them to participate in their groups, although satisfaction levels varied widely. Most of the respondents from Bloom Aurora were less satisfied than others with the support they were offered and would have preferred reimbursements that didn’t affect their existing benefits.

Table 9: Satisfaction with support offered (Q14.)

N Percent Very satisfied 7 47% Somewhat satisfied 3 20% Somewhat dissatisfied 2 13% Very dissatisfied 3 20% Total 15 100%

“There is a way to get paid, but it takes a way from Medicaid, food stamps, and Social Security disability. Most every Bloom family is on Social Security disability and payment cuts into benefits. “Come to an agreement regarding reimbursements and payments. Write it up and stick with it. Don’t make it impossible to comply with. Don’t make the money come out my kid’s mouths. Just be fair.


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Suggestions for additional support Respondents suggested a variety of ideas for additional support that would make it easier for them to attend meetings or participate in subgroups, including on-site child care, stipends for time, and gas cards or gift cards. One-third (33%) of the respondents had no requests for additional support.

Table 10: Suggestions for additional support (Q15.)

N Percent Provide child care (on site) 3 20% Reimbursements that don’t cut into benefits/use gas cards/gift cards instead of money

3 20%

Provide a stipend for time 2 13% Faster reimbursement 1 7% Consistent, written reimbursement policy 1 7% Respite 1 7% Training on the mental health system 1 7% A mentor to help me understand topics 1 7% Meetings located away from downtown 1 7% Meetings located in a cleaner building 1 7% Meeting reminders—phone calls, calendars 1 7% Evening meetings 1 7% Nothing additional 5 33%

Percentages add up to more than 100% due to multiple responses.

Perceptions of importance of work done by groups Universally, respondents agreed that the work done within their groups is “very important.”

Table 11: Importance of work done within group (Q16.)

N Percent Very important 15 100% Moderately important -- -- Slightly important -- -- Not at all important -- -- Total 100%


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Within MHPAC and the Blue Ribbon Policy Council, respondents expressed the belief that their groups play an important role in shaping mental health policy.

“We hold back the leaking dam waters sometimes and try to be forward looking and influence things that are coming down the pike. The current system is fragmented and underfunded.” “We’re trying to set policy, look at funding, and address mental health issues for early childhood. Early intervention can lead to prevention of serious mental illnesses.” “It’s the groundbreaking work for early childhood mental health services in Colorado. It’s the first time the emphasis has been on early childhood. We have state people, legislators…you plant the seed.” “It’s the only outside voice that provides input into policy and gives advice to the Division of Mental Health. It balances out the inclination to cut services to bare bones. We stand in the way. The Federal government finds us important. If Colorado didn’t have us, they would lose money from the federal government.”

Respondents within Project Bloom and Together We Can emphasized their groups’ ability to help with early intervention, resource identification, and networking.

“It’s important that families know the availability of providers and that they can change providers if needed. It helps to have a single point of contact that knows where all the resources are.” “We’re helping tomorrow’s adults by early diagnosis. We are able to educate parents and doctors with early intervention to give these kids a better start in life. “Families with emotionally disturbed kids really need support—a place to vent, plus information on how to deal with our kids.” “Collaboration, partnership—the connections that are made there—I can call on agency people when I need to. They all try to get you the help that you need.


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Importance of having a say in group decisions The great majority of the respondents (87%) said it was “very important” for them to have a say in group decisions.

Table 12: Importance of having a say in group decisions (Q17A.)

N Percent Very important 13 87% Moderately important 1 7% Slightly important 1 7% Not at all important -- Total 15 100%

As family members, they believe they offer a unique and valuable perspective on how the system affects them and how things need to be changed.

“Simply, I am who their decisions affect. They are my children and having them listen to me makes me feel like there is hope for change.” “I’ve lived this. By living it, I know the reality of what needs to be changed.” “A lot of professionals don’t have personal experience with kids with severe emotional disturbances, yet they make decisions about kids with severe emotional disturbances.” “Being a consumer and family member, it’s important that I be heard because I’m a recipient. We are the ones acted upon by the system. We are on the front lines and see what’s lacking—not through theory or reports. We are the front.”

Some respondents expressed the belief that system change was not possible without the input of consumers and family members.

“Without hearing from families, systems change won’t happen and it won’t be sustainable.” “Without the family voice it would be business as usual. You have to have a gut level voice. It can’t be done from research or best practices. Without experiential input, the system won’t change.”


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Satisfaction with influence in group meetings The great majority of respondents said they were “very satisfied” (47%) or “somewhat satisfied” (40%) with the influence they are able to have in group meetings.

Table 13: Satisfaction with influence in group meetings (Q10.)

N Percent Very satisfied 7 47% Somewhat satisfied 6 40% Somewhat dissatisfied 2 13% Very dissatisfied -- -- Total 15 100%

Some of the respondents who were less than “very satisfied” with their influence claimed meetings were not as consumer or family-driven as they would like them to be.

“The climate is such that they don’t want to hear from us. It’s all about budget issues, not needs. We’ve been marginalized in the last 3 years because of downsizing and budget cutting. We’ve lost 5 very strong family members which made quite a difference.” “There is not always enough family or consumer representation. When there is an imbalance, things are not consumer-driven.” “If it is a topic they (the professionals) are working on, they have to have the idea first and I can back it up and provide the parent perspective. If it’s an idea I come up with, it’s difficult to have discussion around it.” “They hear me but don’t listen or act upon what I say.”

One respondent repeatedly expressed her frustration with observing a lot of discussion in her group that didn’t lead to concrete results.

Sometimes we hear the same things over and over again, but we’re not getting anywhere. I don’t see us moving forward, doing anything for the better. I really don’t like going to these meetings. I don’t like politics.


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Perceptions of influence on group decision making Most respondents said they had “some” (60%) or “a lot” (20%) of influence on group decision making.

Table 14: Perceived amount of influence on group decision making (Q19.)

N Percent A lot 3 20% Some 9 60% Little 2 13% None 1 7% Total 15 100%

Perceived amount of influence compared to others

Roughly two-thirds of the respondents (67%) said they felt they had the same amount of influence as others in the group.

Table 15: Perceived amount of influence compared to others (Q20.) N Percent Much more -- -- More 2 13% About the same 10 67% Less 3 20% Total 15 100%

Reasons for feeling less influential than others related to perceived lack of skills and the inability to focus on what was going on in the meetings.

“I’m not an expert on systems of care, budgeting, or administration. My priorities just aren’t there to learn that…I don’t need or want to be an expert in everything.

“I’m just an adoptive parent.”

“I’m not as quick to throw in ideas. I need to move slowly. My family is unstable.”


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Responsiveness of group to issues raised by consumers and family members Approximately two-thirds (67%) of the respondents said the group was “very responsive” to the issues raised by consumers and family members.

Table 16: Responsiveness of group to issues raised (Q21.)

N Percent Very responsive 10 67% Moderately responsive 3 20% Slightly responsive 1 7% Not responsive -- 7% Don’t know 1 7% Total 15 100%

Frequency of acceptance of recommendations made by consumers or family members Recommendations made by consumers or family members were accepted “regularly” (53%) or “often” (20%) according to most respondents.

Table 17: Frequency of acceptance of recommendations (Q22.)

N Percent Regularly 8 53% Often 3 20% Sometimes 3 20% Never -- -- Don’t know 1 7% Total 15 100%

Satisfaction with ability to impact group programs and policies Most respondents said they were “very satisfied” (27%) or “somewhat satisfied” (53%) with their ability to impact group programs and policies.

Table 18: Satisfaction with ability to impact programs and policies (Q24.)



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Respondents who expressed satisfaction with their ability to impact programs and policies said their groups were receptive and open to listening to families.

“They are very open to hearing everything that is brought up. We were one of the few families involved. Everyone was willing to listen.” “The group listens and we can have a dialogue back and forth. Some professionals are also parents, so they understand what we are talking about. We are open with each other.”

Some respondents said that the positive feedback they received from professionals let them know they were having an impact.

“With some of the breakout sessions, I was the family voice and professionals thanked me for sharing my ideas that were outside of their perspective. My creativity and innocence as a non-professional helps me think outside of their boxes.” “What I say and things I bring up are listed to and reinforced by professionals. The feedback I get says I help people to think in a different way. Change comes from inside us. We have to get together and give input to effect change.”

Those respondents who were less than “very satisfied” with their ability to impact programs and policies described structural and budget limitations that affected their ability to make changes.

“MHPAC is very welcoming of many of my ideas and suggestions, but circumstances make it difficult to carry out all of them. We don’t have separate funds from the Division of Mental Health Services. Our influence statewide is still being established.” “We started from a place of great empowerment and abundance of money. Now we have been shortchanged and undermined. I was there during the golden years. We are not valued because of what we have to say anymore. We are tokens. The things consumers and families want, no one wants to hear anymore. They don’t want to hear us talk about Wraparound services. They don’t want to hear about how rural people want equality of services.” “It’s hard to balance the Bloom policies with family needs and goals. For example, Wraparound plans are supposed to be done within 8-12 months, per Bloom, but that’s unrealistic.”


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Some respondents mentioned that some professionals were reluctant to let go of control.

“I think that they have their own agenda. I’ve been told that it’s a professional-driven group. The group needs to step back and let it be parent-driven. It’s a Catch 22 because you need professionals to build the foundation for the group.” “There are still people in agencies who feel they control everything. We let them know the family point of view. We are able to effect change slowly. It is a lot better now than it was five years ago.”

Perceived impact on group programs and policies The great majority of respondents (80%) were able to identify some way in which they had an impact on their group’s programs and policies. Specific examples include:

• Helped to establish a paid Family Involvement Coordinator position—

communicated the need and brought the idea forward to the Executive committee. (Bloom El Paso County)

• Helped to establish a Family Support Group (Bloom Aurora)

• Helped get family members reimbursed for their time. (Bloom El Paso County)

• Helped get family members paid for travel. (MHPAC)

• Helped write a job description for a Wraparound facilitator. (Bloom Mesa County)

• Communicated to professionals the need for parent inclusion in the Wraparound process. (Bloom Mesa County)

• Helped to open up the age requirements for Project Bloom families. (Bloom Aurora)

• Participated as part of interviewing committee. (Bloom Mesa County)

• Helped to reinstitute and reshape the mentoring program. (MHPAC)

• Pushed for childcare to be included in the new Family Support Group. (Bloom Aurora)

• Recommended that a particular advocate was not appropriate for the needs of Bloom members and influenced the outcome. (Bloom Aurora)

• Spearheaded a t-shirt/social marketing project—presented idea, got approval for funding, and got the project done (Bloom Aurora)

• Had extensive input into the wording of a portion of the block grant for the Colorado Division of Mental Health (MHPAC)


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Some respondents believed they were having an impact in a more general, yet tangible way.

“I participate actively in every activity and decision making process within the structure established for the Council. We shape policy—people who are on the Council have had opinions shaped by family members. I hear it, see it, know it. We have challenged them to think differently.”

“I have been their conscience and I’ve had a great impact. They rethink different positions. I encourage them to be brave instead of timid. The tone of the meeting changes if I come and speak from my heart. After I speak others begin to do the same…There is a tendency on the Council to placate the power people. I see us as the power people. I always pick up on the fact that we are not driving the situation anymore.” “I vote, and we talk about what we want on next month’s agenda. I feel like I’m heard there. I don’t know that I’ve had an impact but that doesn’t mean that changes haven’t occurred. You have a feeling of power—TWC teaches that you have the power.”


In almost all cases, respondents were able to identify accomplishments made by their groups and were able to articulate how they contributed to those accomplishments. Bloom Aurora:

• Established a new Family Support Group Family members made contacts, wrote guidelines, identified funding sources, obtained funding, helped determine how the group would operate, voiced opinions, helped write the proposal.

• Established a Youth Group Family members provided ideas and support

• Promoted ongoing collaboration and decision making between agencies and families

Family members attend LCGT meetings and actively participate in discussions, ask for better communication, and vote on decisions.

• Developed a Wraparound process Family members voiced their opinions and shaped the final process.


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• Increased awareness of Bloom and early childhood mental health Family members distributed brochures and cards to primary care physician’s offices, daycare centers, and other locations.


• Created a Project Bloom brochure to be distributed at doctors’ offices Family members conducted research and contributed to the content.

• Developed a Wraparound process Family members participated in training and promoted the idea to professionals.

• Increased awareness of the system of care concept within the community

Family members attended system of care collaborative training, and share system of care concepts with families and professionals.

• Communicated the importance of the family voice to families and professionals

Family members participated on committees, met with other families and encouraged them to provide feedback to the system, called family members and invited them to participate in meetings.

• Increased awareness of the importance of children’s mental health Family members communicated with professionals and other family members through work on committees, participation in outreach efforts, and participation in training.

Bloom Mesa County

• Promoted ongoing collaboration among agencies and families within the community

Family members actively participate in meetings.

• Hired a therapist Family members participated in a subcommittee and reviewed and evaluated applications.

• Made progress towards hiring bilingual translators Family members participated in discussions where the need for translators was brought up, and volunteered to develop the ideas further.


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• Introduced the concept of Wraparound training to professionals Family members participated in Wraparound facilitator training and communicated the family perspective.

• Enrolled children and families into Bloom Family members helped compile the names of counselors who would see children enrolled in Bloom.


• Brought together a range of appropriate players together along with families

Family members have acted as a family voice and have actively participated in group discussions.

• Made progress towards identifying legislation that needs to change

Family members have participated on committees, attended outside meetings, and done some planning.

• Made progress towards planning state mental health policy

Family members have provided a family voice within committees.

• Started a system of care collaborative Family members actively participated in group meetings and supported the idea.

Mental Health Planning and Advisory Council (MHPAC)

• Got money reinstated to the mental health budget/prevented further budget cuts

Family members participated in discussions, conducted research, disseminated information to families, and voted on letters.

• Designed the children and family section of the block grant Family members participated in discussions and influenced the wording.

• Increased awareness of issues to other family members Family members participated in discussions, disseminated agendas, minutes, decisions, and topics of concern to family members.


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• The Council provides support for the consumer and family movement in Colorado

Consumers and family members recruit and nominate others.

• Made governor and legislature aware of the importance of funding mental health services

Family members voted “yes” or “no” on letters drafted by someone on the Council, usually the Chair.

Together We Can

• Provide support for parents going through the process (no examples) • Provide an environment where Social Services can hear from families

(no examples)

Perception of attitudes of professionals towards consumer and family participation Almost all of the family members interviewed said that professionals were either “generally positive” (67%) or “somewhat positive” (27%) towards consumer and family member participation.

Table 19: Perceived attitude of professionals towards participation (Q26.)

N Percent Generally positive 10 67% Somewhat positive 4 27% Somewhat negative 1 7% Generally negative 1 7% Total 16* 107%

One respondent chose “generally positive” and “somewhat negative” therefore the number of responses is greater than the number of respondents. Percentages were calculated on a base of 15, the total number of respondents.

Respondents who said professionals had a positive attitude towards consumer and family participation cited behaviors such as soliciting and acknowledging feedback from family members, sharing personal experiences, showing respect, and being open to and taking suggestions.

“They listen and they respond honestly. Communication is paramount—good, honest, wholesome communication.”

“Some of the professionals who are parents share their experiences. One shared her son’s life story—she typed it up. I cried when I read it.”


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“When they say “What do you think?” or “That sounds good” or “I didn’t realize…” The feedback I get and the overall interaction is positive. We are all on the same team.” “It feels like I’m being treated as an equal. I don’t have a degree in psychology, nor am I head of a department. But when I’m participating, I feel I’m show respect—that what I say is important, and suggestions are taken.” “They are regularly seeking, acknowledging, and welcoming input from families. They are open to suggestions we make and echo what we say. They have it in their heart fairly well. They realize things aren’t always ideal.” )

Some respondents had a mixed view of professionals and were unable to evaluate them as one, homogeneous group.

“There are some (15-20%) who are not positive. They don’t come out and say it, but you can tell by the questions they ask that they are skeptical of the value of family involvement.”

“Most families try to maintain diplomatic relationships, but some family members quickly get into adversarial relationships with professionals. Some professionals have had negative experiences with families than influences their openness. Most of the professionals do want to hear from the families.” “About half of the professionals are extremely positive and half are not ready for that change. There is a split—the good are very good. The positive ones--they listen—it is empowering. I can turn to some of them and they’ll empower me—they’ll reiterate what I say or rephrase things so they are understood. The negative people are not family friendly and don’t understand the disorders and our frustrations. You can’t teach someone who doesn’t want to be taught. They want other professionals to adapt to their way of thinking.”


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Satisfaction with ability to impact professionals’ attitudes or behaviors Most respondents said they were either “very satisfied” (53%) or “somewhat satisfied” (27%) with their ability to impact professionals’ attitudes or behaviors.

Table 20: Satisfaction with ability to impact professionals’ attitudes or behaviors (Q27.)


Feedback, both verbal and non-verbal reinforced the feelings among some family members that they had an impact on the professionals.

“Families can lead by example, but can’t change years of history with the ‘shame and blame’ attitude. I share my own personal family experiences at meetings. Some professionals relate to why early identification would have been beneficial in my case. I have seen some “aha” reactions and have received some comments from professionals.” “We are teaching professionals to think outside of the box. I suggested a creative way to get funding sources by combining eligible services, both state and federal, and professionals thanked me.” “Some professionals have told me after meetings that they understand and acknowledge what I have said.”

In some cases, respondents observed behaviors that led them to believe they had an impact on the professionals.

“I have provided information in the meetings and the professionals have written it down.” “We had someone with a young child come in and tell her story. After that, a professional man, in a high position, changed to a more positive feeling towards an early childhood orientation. You could tell based on the language he used. He was less of a devil’s advocate.”

Some respondents were dissatisfied with their ability to influence professionals and viewed them as inflexible. “They are too set in their ways, but I haven’t tried.”


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“They are not listening to the dire need of consumers. They are listening to “we’ve got to cut more money.” It hurts them to hear of our need. The entire Division of Mental Health has been disempowered.”

“The Project Bloom LCGT people are great. Within Aurora Mental Health, however, people still make arbitrary decision and are condescending when questioned about it.”

Influence on how mental health services are delivered

The majority of respondents were unable to share examples where consumers or family members within their groups influenced how mental health services are delivered. Family members within Bloom Mesa County, Bloom Aurora, and MHPAC were able to specify a few instances—the Wraparound facilitation process, relaxing the Bloom admission criteria, and the wording of the Child and Family portion of the Colorado Community Mental Health Services Block Grant.

“Families were part of the meetings on Wraparound facilitation and shaped what it looks like.” “We were pushing for non-Medicaid families to be eligible to receive Bloom services. The LCGT professionals wouldn’t listen until they were personally affected with the referral status.” “We influenced the wording of the Child and Family portion of the Block Grant; funding was returned to the Division of Mental Health Services that was previously withdrawn through disseminating concerns to families, rallies, contacting representatives, and facilitating how to do these things.”

One respondent was hopeful that family members in her group would have an impact on the system over the long term.

“With the Council, we have the family voice. We can put proposals together. We can influence over time. I’m not sure how it will affect the system over time, but it feels and seems as if change can occur.”


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Training on policy making Roughly two-thirds (67%) of respondents said they had not been provided with training on policy making. Table 21: Whether or not provided with training (Q29.)

N Percent Yes 5 67% No 10 27% Total 15 107%

Additional thoughts on family involvement When asked if they had any additional thoughts on family involvement that they would like to express, respondents emphasized the following topics:

• The importance of family involvement. “Family involvement in decision making is paramount. No one knows a family better than families. Families can tell you what works and what doesn’t.”

• The need for more families and consumers to be involved. “I wish we had more families involved. We need to do more marketing. “Bloom needs to have a lot of families involved. I think families are scared to get involved because of the embarrassment of having a mentally ill child. I tried to recruit family members I know that had issues but they wouldn’t go to the meetings.” “It is vital that more families join the Council. Last month there were four consumers in the room, with me the only vocal one.” “As Together We Can continues to grow, it could have a lot of impact. It takes a grassroots effort to get parents to participate. Together We Can flyers could be handed out outside of the courthouse at 8 a.m. and 1 p.m. to families as they enter.”

• The difficulties families have in participating in decision making and the need for training and support. “Families come into Bloom in crisis. They are not in a position to think about systems change. As families graduate from Bloom they may be able to do that. There is an expectation that families can participate in


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policy making and giving testimony without the proper training. Many professionals aren’t comfortable doing that. We need to provide appropriate mentoring and training. We need to prepare families to do this. We don’t do a good job of developing leaders.” “I would speak up more if I had more experience and knowledge. I feel lost when I go to the group meetings. I don’t understand the information and have a hard time following it.” “Support us more—maybe offer classes—give us strategies on how to deal with our children.” “I would like more education, more training. For example, I don’t understand the budget issues the way I’d like to.”

• The fear families have of increased scrutiny and potential retribution.

“Families have concerns about how safe it is to share the hard issues and what the potential is for retribution. You are always worried about retribution on some level. The family voice is critical for long term system change. We are making inroads and we need to keep the effort up. The Federation has helped with this. We need more technical assistance on how to do it.”

“Families have fears of scrutiny as more and more agencies get involved in their lives through referrals and the overall Wraparound process.”


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2. Professionals How active consumers and family members are in group decision making Most respondents said consumers and family members were “very active” (44%) or “moderately active” (44%) in group decision making.

Table 22: Activity level in decision making (Q3.)

N Percent Very active 11 44% Moderately active 11 44% Slightly active 3 12% Not at all active -- -- Total 25 100%

The question of whether or not a mental health professional can be considered a consumer or family member was brought up by one respondent.

“There is debate around what the definition of a consumer or family member is. Can they be employed by a mental health organization?”

Satisfaction with number of consumers and family members that attend meetings Over half of the respondents said they were “somewhat dissatisfied” (56%) with the number of consumers and family members that attend group meetings.

Table 23: Satisfaction with meeting attendance (Q5.)

N Percent Very satisfied 1 4% Somewhat satisfied 8 32% Somewhat dissatisfied 14 56% Not at all satisfied 2 8% Total 25 100%


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Respondents reasoned that it was difficult for consumers and family members to attend meetings due to lack of time, scheduling, crises at home, and the stigma of identifying with mental health issues.

“I’m not satisfied, but there is an intrinsic problem—families receiving services are most in crisis and have the least amount of time to participate. Families don’t have the time, energy or freedom to participate. It’s unrealistic to ask people to help at an abstract, policy level when they have crises at home.” “I’d like to see more. It’s hard to capture a time that is convenient for everyone. Providers want them earlier, consumers want them later.” “The challenging piece is the time it takes. It’s not realistic to have a lot. How does the BRPC go where the families are rather than having families come to us?” “Self identification is hard. In the Hispanic community, people don’t want to identify themselves with mental health.”

Two of the chairpersons observed that some professionals in their groups were also consumers or family members but did not identify themselves that way.

“We have some family members participate that don’t present themselves as such, so family participation is greater than it appears on the surface.”

“Some of the professionals are also consumers who don’t identify themselves.”

Satisfaction with the level of participation in meetings Most respondents were “very satisfied” (52%) or “somewhat satisfied” (28%) with the level of participation of the consumers and family members that attend meetings.

Table 24: Satisfaction with level of participation in meetings (Q6.)

N Percent Very satisfied 13 52% Somewhat satisfied 7 28% Somewhat dissatisfied 5 20% Not at all satisfied -- -- Total 25 100%


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Respondents who were less than “very satisfied” with the level of participation in meetings said that sometimes consumers and family members vented their frustration with system issues the group did not have control over, or did not have a complete understanding of system issues.

“There is a disconnect between professionals and parents. They bring other problems in dealing with the system to the LCGT. The LCGT can be a forum to speak of dissatisfaction—there are lots of holes in the system. A proactive approach isn’t always taken.” “The people who participate are very outspoken. A challenge is having shared knowledge (between consumers and family members and professionals) with respect to the mandates and requirements the state has. Those who are not aware of the state’s requirements have to be educated on why things have to be done a certain way.” “I’m not satisfied, but I see how difficult it is for families—the mental health system is complicated and hard to understand. It is difficult for a family to come into things mid-stream.”

Some respondents observed that participation was not equal among family members.

“We have a couple of key family members who do a phenomenal job. Outside of those, it’s hard to get consistent participation. Family members come in and out of the group.”

There are certain family members who will speak up more than others.

A few respondents noted that sometimes family members can feel intimidated in larger group setting.

“Mainly I wish they felt freer to participate. Often they feel intimidated. We need to level the playing field—maybe have people present themselves by name and location only, not by title and organization. Identification by agency creates divisiveness. Sometimes providers can shut people down.”

“I would like it better if we could integrate them more vocally, in the large group.”


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Satisfaction with the number of consumers and family members that participate in subcommittees or subgroups Most respondents were “somewhat dissatisfied” (48%) or “not at all satisfied” (8%) with the number of consumer and family members that participate in subcommittees or subgroups.

Table 25: Satisfaction with number participating in subgroups (Q7.)

N Percent Very satisfied 3 13% Somewhat satisfied 8 32% Somewhat dissatisfied 12 48% Not at all satisfied 2 8% Total 25 100%

Many respondents expressed the desire for more consumers and family members to participate in subgroups.

“I know that the few families that we have try to be involved but there are not enough of them to go around.”

“There should be more families on the Executive and Access & Services Committees, but people have other obligations.” “We could have more, but how do we reach them?”

Satisfaction with the level of participation in subcommittees or other subgroups Most respondents were “very satisfied” (44%) or “somewhat satisfied” (36%) with the level of consumer and family member participation in subgroups.

Table 26: Satisfaction with the level of participation in subgroups (Q8.)

N Percent Very satisfied 11 44% Somewhat satisfied 9 36% Somewhat dissatisfied 3 12% Not at all satisfied 2 4% Don’t know 1 4% Total 25 100%


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Several respondents observed that consumers and family members don’t always feel comfortable speaking up.

“They don’t participate as much as they could if there were greater numbers of them. They feel lost and intimidated. When families speak up, we might only hear what they are comfortable telling us and not get the total picture.”

“It relates to the need to build relationships and a higher level of comfort among a group of people that have had negative experiences with the system and other groups in the past.” “It’s hard to gauge silence—Are family members absorbing information or is it something else? It’s hard to read the dynamics. It takes a lot of probing with some folks.”

Some respondents noted that consumer and family members are not distributed evenly across subgroups.

“I think that there is always room for improvement. I would like to see more family members participate in all committees rather than just on the Child and Family Committee. We need more than adult consumers—we need more of a voice for the children on all of the committees.” “They are spread too thin. They choose a few groups to be involved in, but some groups have very little family member participation.” “The families that are involved are very involved. Their voice has so much weight—anything will go the direction they want it to go. A lot of the participation is shouldered by only a few family members.”

One respondent stated that there is a problem with role confusion when family members are also mental health professionals.

“People need to have their roles clarified so there is no conflict of interest. Sometimes a parent is really representing the organization they are working for. There is no person in my subgroup that is playing strictly the role of parent.”


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Importance of consumer and family involvement to success of group All of the respondents said consumer and family involvement was either “very important” (84%) or “moderately important” (16%) to the success of their groups.

Table 27: Importance to success of group (Q4.)

N Percent Very important 21 84% Moderately important 4 16% Slightly important -- -- Not at all important -- -- Total 25 100%

Frequently respondents said that consumer and family involvement is critical to understanding needs and identifying system barriers.

“From an agency perspective, we need to learn about family issues and system barriers. We need to value, not discount family experiences when we make decisions. Families have been invaluable to us in telling us what needs to be worked or changed. Professionals need to take a step back and look at things from family perspective. Sometimes families can appear adversarial but it’s important to remember it’s their life experiences that they are sharing and they are passionate about it. I don’t think as a professional you can make decisions without family input and be right 100% of the time.” “There’s a saying—‘Not about us without us.’ You can’t make decisions unless the people they are affecting are present at the table. You need families present to know and understand what they are going through.” “The consumer and family perspective represents the impact of decisions at the local community level in a way that other Council members have no true way of understanding.”

Consumer and family involvement provided direction and guidance for their groups.

“Families in the community give us direction. We’d be missing the boat without their input. Consumers add a richness to the group.” “Too often we assume we know what family members need. It’s important to get their input directly and for them to drive the direction of the group.


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“We make a point of hearing families describe issues at a local level at each meeting to help guide policy discussions. Policy discussions are not done in the abstract.”

One respondent observed that although family members have input, decision making was driven by professionals.

“Although I think that their intentions are good, sometimes it seems as if some of the professionals will have made decisions before the meetings happen. I think, ‘Wait a minute, everyone is on this page and I’m on that page.’ Parents can voice their opinions, however, and their voices are heard.”

Another respondent made the point that the importance of family involvement in decision making depends on the stage of development that the organization and the family are at.

“Initially, when the focus is on assessments, family involvement in decision making is less important. Over time, as you understand the gaps in the system and what is needed, family involvement becomes more important. It becomes very important when you get to the point of maximizing and mapping all of the services and supports. Then families are able to advocate with professionals.

Perceptions of influence on group decision making The vast majority of respondents said consumers and family members have “some” (56%) or “a lot” (40%) of influence on group decision making.

Table 28: Perceived amount of influence on group decision making (Q9.)

N Percent A lot 10 40% Some 14 56% Little 1 4% None -- -- Total 25 100%

Some respondents volunteered that consumers and family members would have a greater influence on group decision making if they had a better understanding of system rules and regulations, and were better able to communicate.

“It goes back to not having, shared, complete knowledge as to what the rules are. It’s always a learning process. Some professionals need to be educated as well—it’s not just the consumers and family members. Knowledge about nuances is not shared.”


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“With family members who are not eloquent, sometimes the content of their message gets lost. Sometimes family members are offensive in the way they try to make a point.”

Frequency of acceptance of recommendations made by consumers or family members Most respondents said recommendations made by consumers or family members were accepted “regularly” (40%) or “often” (28%).

Table 29: Frequency of acceptance of recommendations (Q10)

N Percent Regularly 10 40% Often 7 28% Sometimes 7 28% Never -- -- Other—recommendations haven’t been made

1 4%

Total 25 100%

Some respondents said that recommendations by consumers and family members were made infrequently, but that when they were made they tended to be accepted.

“They haven’t done it a lot, but most recommendations made by them have been implemented in some way.” “Recommendations are accepted regularly when it happens.”

One respondent emphasized that recommendations typically are not made by one person without the input of others.

“Recommendations come forward in an additive manner from both professionals and family members and consumers. You can’t separate them out. An individual’s ideas are always added to.”


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Responsiveness of group to issues raised by consumers and family members The great majority of respondents said their group was “very responsive” (48%) or “moderately responsive” (40%) to issues raised by consumers.

Table 30: Responsiveness of group to issues raised (Q11.)

N Percent Very responsive 12 48% Moderately responsive 10 40% Slightly responsive 2 8% Not responsive -- -- Other—issues haven’t been raised

1 4%

Total 25 100% Examples of consumer and family member influence in decision making by the group or on programs or policies Respondents were able to offer a variety of specific examples of the influence that consumers and family members had on decision making by the group or on the group’s programs or policies. Respondents said consumers and family members:

Bloom Aurora

• Helped develop Flex Funds guidelines.

• Identified the need for and were the driving force behind the creation of a Family Support Group.

• Assisted in shaping and implementing the logic model

• Helped plan Wraparound services.

• Regularly influence how documents are worded and presented.


• Identified the need for and defined the requirements for a paid Family Involvement Coordinator position.

• Influenced decision to train family members as Wraparound facilitators.

• Influenced the use of DC-03 as a diagnostic tool.

• Helped structure the stipend offered to families.

• Influenced group to agree to use common language without acronyms.


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Bloom Mesa County

• Identified the need for a parent Wraparound facilitator position, pushed the idea forward, and helped write the job description.

• Regularly make decisions by actively serving on a committee that works on organizational and structural issues.

• Had input into services included in Flexible Funds


• Influenced and approved the content of a funding matrix.

• Helped identify and prioritize areas for focus.

MHPAC

• Influenced the wording of Medical Services Board rules.

• Identified protections needed for behavioral healthcare within systems of care.

• Took the lead on influencing group’s position on the HIFA waiver.

• Influenced the shape and content of the Medicaid capitation RFP.

• Educated legislators and influenced various pieces of legislation.

• Kept rural and other diversity issues at the forefront of discussions.

Together We Can

• Had input into a fact sheet used to prepare family members to deal with Social Services.

• Helped establish priorities and provided direction regarding schools and after school programs.

• Got the school coalition involved in meetings.

• Supported movement towards a system of care model.

• Influenced police policy relating to kids who run away.


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Impact of family involvement on professionals

Respondents were asked what impact, if any, consumer and family participation had on them. Responses related to:

• Increasing empathy.

“It’s given me a much more eye-opening experience. I empathize better, and they help me look at consumers in a different way.” “At one meeting we introduced ourselves and said what we were looking forward to for the summer. The professionals were saying things like, ‘mountain biking,’ ‘camping’ and other fun activities. One parent was in tears. She said that she never got to take a vacation because she had to take care of her child who had special needs. It kept it real for me.” It makes me better at what I do—I’m empathetic and understanding. I can understand their needs. I can get them help with schools and other resources. I’ve walked that path and I’m still walking it. Families pick up on that.

• Creating and refreshing awareness of how the system impacts families and what needs to be changed.

“It’s kept me attuned to the personal impact of policy decisions have on consumers and family members” “They give me a renewed understanding of the parents’ perspective. They point out system problems and say we have to change it.” “Family participation has given me pause to reflect on what is and what isn’t working.” “It’s reiterated the importance of developing systems that are effective and efficient for families.”

• Making abstract policy concepts concrete.

“It’s kept me attuned to the personal impact of policy decisions have on consumers and family members.” (Professional, MHPAC

“I’ve been engaged in policy work and legislation and it helps to make the abstract concepts concrete. Policy is so abstract until you implement it.”


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• Increasing awareness of issues important to families.

“I come away from meetings with a new awareness of things. For example, a family member spoke about the stigma attached to saying to a friend or colleague that they are going to the “mental health center” for an appointment versus the “doctor’s office.” I hadn’t thought if that before—it had a profound effect on me.” “It has helped me broaden and refocus my perspective, since I’m not a family member.”

• Increasing awareness of underserved families. “It’s given me a much better perspective about who is in the community and what the needs are. It’s encouraged me that NW Denver has a richness and a wide variety of folks. We haven’t even tapped the Spanish speaking community. We need to draw those folks in.”

• Shifting orientation towards a system of care model.

“It’s helped move me towards a system of care model. I hear more clearly and less judgmentally about what families need. I’ve been in the field a long time. I thought I knew everything. Now I listen more to what family members have to say. Sometimes we give lip service to systems of care but do business as usual when it comes to the details. That contradiction has become sharper for me. It’s been good for me.”

• Taking action on the job to solve consumer and family problems or recommend

policy stances.

“It offers me information to bring back into the system and begin to advocate on behalf of consumers and begin to look at what needs to be changed in the state system. I take what I hear and think about how I can incorporate this at work.” “The plight of these families is significant. It would be easy for me to compartmentalize my job. When you talk to families you realize the potential there is to improve things for them. I listen to families and I have some influence to help them by thinking out of the box around services and supports.”

“I hear what they say and try to get them the services they need. Sometimes there isn’t money for the services or the services are not appropriate for them. We are still ‘siloing’ families to services versus bringing services to families.”


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“It’s had quite an effect on me. As public policy person, from a provider’s perspective, it’s important for me to know how consumers and family members think about issues. I listen, and it makes a difference in how I recommend policy stances and advise my membership on positions to take.”

• Changing jobs and moving to a more family-oriented agency. “I switched agencies because of consumer and family input. We are in business to help and advocate for families. If a professional can’t understand at a deep level where families are coming from, it’s easy to become jaded and callous. That’s what happened at my old job.”

Examples of consumers or family member influence on opinions or attitudes towards issues

Respondents offered a variety of examples how consumers or family members impacted their thinking. Examples include being:

• Less quick to judge family members or situations.

“It is helpful and humbling to me as a professional who is not a parent to really learn from parents and never underestimate their knowledge. In one meeting we discussed misinformation that was shared by a professional and the professional had to own up to it. I learned to step away from judging them—to walk in their shoes. I learned to be more empathic, and learn to pause before I make decisions.” “When I talk to a parent with a mistrust of the system I try not to be too quick to solve the problem. I try to listen more and slow down my pace.” “It happens a lot. You always get a different perspective on something you thought you already know. We need to look deeper at the barriers that keep families from participating, such as substance abuse, domestic violence, transportation, or basics like food. Families have made me less judgmental about these things.”

• More understanding of the challenges and issues facing families.

“They influence my opinion on almost all issues. A specific example is the Family Support Group. That was important—the families needed a true support group. Families influenced how I felt about the entire process and what the issues really were.” “One parent who joined our larger council expressed her frustration regarding not knowing what her role was supposed to be and how she


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could contribute. It helped me see the challenges parents face and that they need support to enable them to participate.”

• More understanding of system issues and how they impact families. “In the area of grievance and representation in grievances—hearing the family perspective on why it’s important has helped me be supportive of the issue.” “Families provide personal examples of system issues as they impact family members. It keeps it in the front of my mind.” “A family member was complaining that the professionals don’t communicate with one another. She validated the idea for me that we as professionals need to be more coordinated.”

• More supportive of a system of care model

“The service delivery model we are looking at now was influenced by family members—identifying resources across the community and making them available to families—to help support them in choosing services, working with families to strengthen their ability to seek out services rather than channeling them into something. We are listening more and giving up control—we are transferring who is in charge to families.”

“The biggest issue is the system of care and how we do it as a state so it meets the principles that the literature suggests. Does the possibility exist that the state could do this and do it right? Consumers influence my hope that it is possible to do it right.”

Examples of consumer and family member involvement and influence on decisions made or actions taken Respondents said consumers and family member involvement influenced them to make decisions or take actions in a variety of specific ways. Examples include:

• Allocated money from their budget to help fund a Family Involvement Coordinator position. (Bloom El Paso County)

• Influenced the decision to recommend the hiring a particular therapist because of her family-oriented skills. (Bloom El Paso County)

• Introduced idea of the Caregiver Alliance Toolbox, a computer program designed to share records electronically among providers, to the chairperson after hearing a family member share her experiences. (BRPC)


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• Applied for a grant after being sold on the idea by family members. (Together We Can)

• Supported family member recommendations on the shaping of the Family Support Group (Bloom Aurora)

• Supported family member recommendations to hire a Wraparound facilitator as an agency employee rather than a contract employee (Bloom Mesa County)

• Supported family member recommendations on positions on system of care and HIFA waiver issues. (MHPAC)

• Elevated a couple of specific system issues to a priority level and took action to look for opportunities to solve problems. (MHPAC)

• Continued a support group for foster families beyond the requirements of a grant. (Together We Can)

• Solicited family member input and incorporated it into training and resource materials (BRPC)

• No longer use acronyms and are more sensitive to language. (Bloom El Paso County)

• Prioritized budget issues within the Legislative and Budget Council. (MHPAC)

• Shared with supervisor a parent’s perspective that services are not coordinated. (BRPC)

• Offered to help problem-solve with individuals on their personal issues after meetings. (BRPC, MHPAC)

In some cases, respondents observed the problems families in their groups had in dealing with the system and came up with solutions. Examples include:

• Established a team to support children and integrate all of their behavior plans from different agencies, and ensured that a full diagnostic workup was part of the process (Bloom El Paso County)

• Helped make Flex Funds available as petty cash to help families with insurance co-payments. (Bloom El Paso County)

• Influenced local mental health center to make exceptions for Bloom family members with insurance problems. (Bloom El Paso County)

• Changed the process of introducing a Wraparound facilitator to the family, using the Bloom Care Coordinator as a bridge. (Bloom El Paso County)


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Examples of consumer and family involvement and impact on professional practice or job Respondents were asked if they could share examples of where a consumer or family member had an impact on their professional practice, the way they delivered services or the way they did their job. A few respondents said consumer and family members shape their overall attitudes and approach towards families by providing them with a better understanding of their situations.

“I’m an administrator. It’s an overall influence on my way of thinking.” “Families impact the way I do business every day. Families are my customers. I have a very strong belief and value that my professional position is to advocate for my clients. It’s important for me to work at seeing things from the family perspective. The families in the LCGT help me understand deep seated reasons for behavior, and why resistance is encountered at times.” “I’ve always known that I’m no better or worse than my clients but this became real to me how individual families deal with isolation and pain. It makes me want to do something about it and it’s helped me to become a better social worker because of my increased understanding.”

Some respondents say they have become less judgmental and less quick to assume the worst.

“I’m more empathic, less judgmental, and more understanding.” “I slow down when I make decisions. I tell the employees I supervise not to assume the worst of parents in the way I might have in the past. I don’t assume the worst too quickly anymore. Parents who are capable give me perspective.”

Specific examples of actions taken at work by professionals as a result of consumer and family involvement include:

• Streamlined the Wraparound process for families

• Clarified boundaries and roles for Wraparound facilitators

• Increased the implementation of Wraparound services

• Changed survey methodology for collecting feedback from families

• Shared resources made aware of by Bloom families with other families


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• Recommended policy recommendations, including those related to the grievance process and budge, to his membership organization.

One respondent was motivated to initiate a major system change based on feedback from a family member on the issue of the stigma attached to visiting a mental health professional versus a medical doctor.

“The mental health center that I work for has done a lot to incorporate consumer and family input. The stigma comment I made earlier had an impact on me. How do we use a medical model for mental health that works well? I thought, I can’t give up. I reinvested my energies and began having conversations with others on the topic. Now, we will have mental health staff collocated with medical staff and have adapted the triage model. A person can see their medical doctor and also receive mental health services at the same time, making for a shorter visit. This will lead to earlier identification of mental health challenges and delivery of services. I wrote about the stigma issue in our monthly newsletter for the staff. The staff gave me feedback that said it impacted them as well. We see things differently now.”

Examples of how consumers or family member influenced how mental health services are delivered Most respondents were unable to share examples of how consumer and family involvement had influenced how mental health services are delivered. Several respondents, however, were expressed hope that current activities would lead to an impact on the system over the long term.

“We are still building the system in our community. Family feedback is shaping how the community partners interact and communicate as well as how Wraparound facilitation operates.”

“The State Interagency Partnership could have that impact long term—it’s a two-year process. There is a lot of work involved.”

“There is starting to be an impact on the system. Agencies are talking about systems of care even if they don’t know what it means.” “There is more hope that the mental health agency will hire employees to do more in-home services. Parents want mental health services to happen in non-traditional settings rather than in an office.”


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A few respondents offered specific examples of how consumers and families had impacted the system or may influence it in the future:

• Consumers and family members influenced the design of the Medicaid

benefit package (MHPAC)

• Parents have participated on a committee that has helped make the system easier to navigate by creating a single point of entry into the system. (Bloom Mesa County)

• A family member is participating on the planning committee for a new children’s hospital that is incorporating behavioral healthcare. (Bloom El Paso County)

Disadvantages, if any, of involving consumers and family members in decision making. Respondents were asked if involving consumers and family members in decision making presented any disadvantages or challenges. Several respondents said consumers and family members don’t always have a complete understanding of the system and the limitations of what the group is able to do.

“We sometimes have to spend a lot of time justifying the system and its limitations. People get their feelings hurt, and we need to repair the relationships.”

“Consumers and families don’t understand the current system in terms of what happens behind the scenes. They come in at a disadvantage with the knowledge it takes to change the system. There is a learning curve for them.” “The idea behind family involvement is positive, but it is a bit of a struggle at times. There are conflicts between what families want and what professionals can do—relationships are tested by that. In the end, we pull together.”

Some respondents said it can be challenging when consumers and family members are dealing with their own mental health issues.

“You might have a person who has their own mental health issues or doesn’t have clarity. But you have to have it—you get to real issues. You are pandering if you don’t. More time on the front end leads to less time on the back end.” “We have to understand that consumers sometimes display symptoms of illness in meetings. That’s ok, as long as we don’t devalue them because of those things.”


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Family stress and communication barriers were also brought up as challenges. “When families are in crisis, it’s difficult for them to give feedback to

professionals. There is too much on their plate.” “Some family members are not professional about the way they share

their information. They are belligerent and don’t know how to package what they want to say. Also, sometimes family members feel intimidated and find it hard to speak up.”

Additional thoughts on family involvement When asked if they had any additional thoughts on family involvement that they would like to express, respondents emphasized the following topics: • The importance of consumer and family involvement.

I’ve been in the field for 27 years. I can remember when consumer and family involvement wasn’t taken into consideration. We’ve done a significant turnaround since then. I rely on families and consumers. Consumers are now part of the staff and boards driving policy. Consumer and family input makes us better—we greatly value their positions. “I want people to understand that parents are important. I’ve lived in different parts of the country, and the best experience I’ve had has been in Mesa County. Respect between parents and professionals is mutual. I feel comfortable with parent input.” “I find myself frequently in ‘shock and awe’ at family stories. It’s humbling to hear their perspectives. It’s imperative to have consumer and family involvement in the system. It’s imperative to hear what consumers and family members have to say.”

• The need for more families to be involved at a consistent level. “If it were possible to have a few more family voices it would add strength to the group. The BRPC invites consumers to come in and speak their own issues on a regular basis.” “It’s been a slow evolution over the past 2 ½ years or so. It’s hard. We have so far to go. It’s been a struggle from the very beginning. We revisit some things over and over because of the change in the composition of family members in our group.” “We continue to be challenged to find ways to recruit and retain consumers and family members on the Council and welcome ideas on ways to make it


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more enticing. We push ourselves to better engage consumers and family members.”

• The opportunities available to get parents more involved and the family voice heard. “There are opportunities for parents to act as paraprofessionals to offer services to other parents, such as leading parents to clinical supports, Wraparound facilitation, and co-facilitating Incredible Years sessions. Parent advocates can engage families better than professionals—they have ‘been there, done that.’ We need to value and hold parents in the highest regard.”

“Obviously, we need more families to participate. We need a process to share family information from the Family Involvement committee to Alliance for Kids. There needs to be a way to get the family voice heard.”

• The challenges involved in building trust and being comfortable enough to share information openly. “Family involvement is a work in progress. We’ve come a long way, but we’re still learning, still growing. We represent the system that has failed families. Trust isn’t always there. It’s a push-pull process.” “I think families sometimes feel devalued, particularly when there is disagreement. As professionals, we’re more used to continuing a business relationship with other professionals around some very sticky issues. The family members tend to take it more personally, because for them, it may impact them personally.”

• Understanding the time and commitment it takes to forge relationships and incorporate family involvement. ”It requires you to trust the process. Collaboration is trusting we can work through things as a team, as partners, as a committee. Collaboration takes time and commitment.”

“Time will tell…we need to build trust over time.” “It’s all about building relationships—you can do that in a community. We are building connections among resources, bringing each others expertise together.”

• The need for dedicated staff and technical assistance to promote family involvement.


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“If people are serious about family involvement there should be a dedicated staff person to invite families in, meet with families, and acts as a conduit for the community so that families get the services they need and are also encouraged to weigh in on administrative decisions. Any grant that requires family involvement should have a dedicated, paid position for someone to act as a family involvement coordinator to assure a high level of family involvement. To not do that is a recipe for frustration and failure.” “We can provide stipends and child care, but there is more to implementing family involvement than that. Families need to feel part of the group and the group needs to talk the same language. Very local technical assistance is required to connect with families, build family leaders, and facilitate community connections. It’s harder than we think it is.”

• The need for education about systems.

“It helps to educate families about navigating the systems. It’s invaluable to me, as a family member as well. I’ve learned through experience that you are more successful when you work within the system than outside of it. Everyone needs to know systems.”

• The need to support consumer and family involvement in underserved populations—rural and ethnic.

“We need to find ways of supporting consumer input at local levels, not just at the state level. There is very little going on at the local level across the state. Locally, families need support, training and guidance from resources that are not available at the local level. The non-metro perspective is not represented well at all. The meetings are always in Denver. Consumers and family members are handicapped in their ability to have a voice. The metro consumers do not represent everyone. We need wider representation. We could have broader input if we could develop local advisory or advocacy groups statewide.” I want more family impact—families to say, “This is what we need.” There is strength in numbers. We have growing populations of different ethnicities. We are not there—we can only get there with family participation where they feel they can voice their needs. “Many groups within mental health don’t have representation from underserved minorities like blacks, Native Americans, and Latinos. Together We Can has a good start, but we could do better.”


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• The need for sustainable, in-home delivery of services within systems of care. “It’s been my whole push to get services to families where they are and when they need them. I came from a system where we provided services to people in their homes. Families want help at the times they are struggling. With systems of care we need to figure out how to sustain in-home delivery of services long term. We don’t want to get families vested and then pull out because there is a lack of funding.”

• The need to focus on preventative services for children at risk

“There is no emphasis on promotion of good mental health and preventative services. We are only focused on the top part of the service delivery triangle—the children who are diagnosed, which is stupid. We have families with children at significant risk of developing SED but whose children don’t qualify for Bloom because they haven’t been diagnosed. It’s very frustrating. We are sucking children into a system that is not prepared to deal with them.”

• The challenges presented by some group members playing multiple roles.

“Family involvement is absolutely necessary but it brings up challenges related to playing many roles. We have to spend a lot of time clarifying the roles we all have to play. How do we work together yet maintain healthy boundaries regarding confidentiality and professionalism?”

• Pride in what has been accomplished so far.

“I’m proud of what we’ve done and hear positive things from the family partners. I know their struggles. It’s been a challenge.”


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3. Chairpersons

Composition of organizations—percent of consumers and family members

The percent of consumers and family members within each of the organizations ranged from 20% (Bloom El Paso County) to 52% (MHPAC).

Table 31: Composition of organizations (Q2.)

Percent Consumers/

Families

Percent Professionals

Bloom Aurora 35% 65% Bloom El Paso County 20% 80% Bloom Mesa County 25-30% 70-75% BRPC 45% 55% MHPAC 52% 48% Together We Can 25-33% 67-75%

Frequency of group meetings The BRPC meets quarterly—each of the other groups meet at least monthly.

Distribution of members that regularly attend meetings Most group members that regularly attend meetings are professionals. Consumers and family members comprise between 10% (Bloom El Paso County) and 45% (Together We Can) of the group members that regularly attend meetings.

Table 32: Group members that regularly attend meetings (Q4.)

Percent Consumers/

Families

Percent Professionals

Bloom Aurora 40% 60% Bloom El Paso County 10-15% 85-90% Bloom Mesa County 25-30% 70-75% BRPC 15-20% 80-85% MHPAC 40% 60% Together We Can 45% 55%


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Percent of total consumer and family membership regularly that attend meetings The percent of the total consumer and family membership that regularly attend meetings ranges from 50% to 90%.

Table 33: Consumer and family membership that regularly attend meetings (Q5.)

Percent

Consumers/Families

Bloom Aurora 80% Bloom El Paso County 85%-90% Bloom Mesa County 90% BRPC 50% MHPAC 75% Together We Can Varies

Percent of total consumer and family membership that serve on boards or subcommittees The percent of the total consumers and family membership that serve on boards or subcommittees varies widely by group

Table 34: Percent of consumer and family membership that serve on boards or subcommittees (Q8.)

Percent Consumers/

Families Bloom Aurora 100% Bloom El Paso County 5-10% Bloom Mesa County 100% BRPC 80% MHPAC ~75% Together We Can 50-66%


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Kinds of support offered to consumers and family members The kinds of support offered to consumers and family members to enable them to attend meetings varied by group. Most of the groups reimbursed families for child care, their time, and travel expenses. Only one group, MHPAC, offered formal mentoring.

Table 35: Kinds of support offered to consumers/family members (Q11.)

Bloom Aurora


Bloom Mesa

County BRPC MHPAC TWC

Child care Yes Yes

On site Yes Stipend No

In support group

Mentoring Informal Informal No

Included in

training Yes Informal Payment for time or services Yes Stipend Yes Stipend No No Travel reimbursement for meetings Yes Stipend Yes Stipend Yes No

Other: -- Lunch

Trainingand

Confer-ences Lunch Snacks food

Additional kinds of support being considered Additional kinds of support to enable consumers and family members to attend meetings and participate in the group include:

• More formalized mentoring • A community-wide Family and Youth Involvement Coordinator A revised

training program for new members • A 24 hour help line


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Level of involvement of consumers and family members in specific activities The level of involvement of consumers and family members by activity varied by group. In general, consumers and family members were less active in “research about children and families” than they were in other activities. Table 36: How active are consumers and family members in activities (Q13.) Scale: 1 = not at all active, 4 = very active

Bloom Aurora


Bloom Mesa

County BRPC MHPAC TWC Policy, planning , evaluations 3 3 4 4 2.5 4 Management and governance 4 3 4 3 3 4 Training 4 2 4 4 2 3 Family support 4 1 4 N/A 3 3 Community organization and education 3 2 4 4 3 3 Research about children and families 2 1 2 2 3 1

Steps taken to involve consumers and family members in decision making

Bloom Aurora Family members are equal voting members on the LCGT, are have input into policies and procedures.

Bloom El Paso County Family representation is sought out for every board and committee, a Family and Youth Involvement Coordinator is being put in place. There is training on systems of care and on the importance of family involvement.

Bloom Mesa County Family members are invited to participate in meetings where decisions are made, and are asked for their input. Outside of the LCGT, a parents group meets regularly. Bloom is part of the curriculum at a high school that teen moms go to—teen feedback is incorporated.


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Blue Ribbon Policy Council Family members are provided with information prior to their first meeting and are encouraged to participate and help guide priorities around children’s mental health. At every meeting a family member or consumer is scheduled to speak about how an issue affects them personally.

MHPAC Open discussion is encouraged around critical issues, and formal voting is supported. When silence is noticed, there is an attempt to elicit consumer and family member comments.

Together We Can Consumers and family members have an equal opportunity to speak up, provide direction, and vote.


Each chairperson identified accomplishments made by their groups and described how consumers and family members contributed to those accomplishments. Bloom Aurora:

• Established a new Family Support Group. Family members came up with the idea, did a lot of the legwork in planning it, and most will participate in it.

• Have begun to enroll families in services. Family members reviewed informational material so that it included the right language and helped design a referral flowchart for services. Family members have attended Wraparound training, sit on the Wraparound Council, and review services.

• Hired a Youth and Family Coordinator. Family members approved the job description and tasks, participated in interviews, and have input into supervision.

• Developed a workgroup for youth and family involvement. Family members developed a workplan and helped to carry it out.


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• Provided outreach to childcare settings to support children with mental health needs. Family members approved the idea.


• Established training initiatives around DC 0-3, Wraparound, Decca, and outreach training relating to systems of care and Boom.

Family members have assisted with some training, help do presentations to community partners, and have been trained to be Wraparound facilitators.

• Restructured Alliance for Kids to align with the state systems team to incorporate system of care principles and to become the early childhood system of care infrastructure.

Family members participate in all meetings and helped to develop bylaws for Alliance for Kids.

• Creation of the Bloom Care Coordinator position.

Family members participated in committee meetings.

Bloom Mesa County

• Increased awareness within the community of the importance of social and emotional well being of children and families.

Family members participated in meetings where advertising and public relations was discussed.

• Provided ongoing training with DC-03, NCAST, Incredible Years,

and convinced the state and the funders of Bloom to allow DC-03 to be a diagnostic tool to allow kids into Bloom.

Family members help with word of mouth.

• Began implementing the Wraparound process, within Bloom and

within the larger system. Family members were trained in Wraparound facilitation, participate in advocacy, outreach, and education, and participate in meetings where decisions are made.


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• Identified and prioritized areas for focus, formed committees, and established and built upon existing workgroups.

Family members and consumers presented local issues to the group.

• Got agencies and family members to agree on a funding matrix.

Family members participated in a workgroup that examined the matrix, and provided input on funding priorities.

• Attracted an influential mix of people to participate on the Council.

Family members made suggestions as to who needed to be a part of the Council.

• Had a national organization publish an article on the BRPC which helped generated public awareness of children’s mental health issues.

Family members participated in a full Council meeting and provided feedback on the article before it was published.

MHPAC

• Wrote the three-year mental health Block Grant plan for Colorado.

Consumers and family members provided the written language and were involved in providing feedback and performance measures.

• Focused energy on system transformation efforts in supporting the federal grant application.

Consumers and family members have spent time outside of the Council, attending additional meetings to identify opportunities for system change to benefit system delivery. Some have volunteered to write and edit pieces.

• The Council is working together as a whole, treating each other

with respect during discussions with diverse perspectives.

Consumers and family members voice how difficult some of the group processes have been on them in the past. Voicing concerns raised sensitivity and increased awareness of the value of different perspectives.


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Together We Can

• Got community organizations and agencies to the same table to talk

Parents said we need to do something in our community—parents and families drive the directions we go.

• Received a Family to Family grant. Parents took the lead in applying for the grant.


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Conclusions

The most significant conclusion is that the commitment to include family member and consumers in policy and program development organizations has been highly successful as indicated by the numerous contributions named by all three groups of respondents: family members, professionals, and chairpersons. Consumers and family members are having in impact on their groups and the professionals within them by:

• Actively participating in group discussions.

• Sharing their personal stories and experiences.

• Voting as equal partners within their groups.

• Promoting their own ideas and selling their groups on them.

Three specific projects: the creation of the family support group in Aurora, a parent Wraparound facilitator in Mesa County, and the family involvement coordinator in El Paso County were conceived by family members who then convinced the rest of the group that these were important activities. Consumers and family members have been influential in decision making that affects group programs and polices and are beginning to make headway in making changes to the system itself.

There is unanimous agreement that consumer and family participation is important to group success. Consumers and family members offer a unique perspective on what is and isn’t working within the mental health system that cannot be duplicated. Input from consumers and family members also provides direction and focus to groups and keeps discussions reality-based. Consumers and family members believe, along with group chairpersons, that they are contributing to the accomplishments of their groups in important ways. Professionals say consumers and family member participation has had an impact on them in ways ranging from the simple (e.g., increasing empathy) to the profound (e.g., collocating mental health services with other medical services). All of the groups would benefit from more consumer and family participation and family members and professionals both want more families to participate. There are not enough family members to take part in all of the subcommittees. Consumers and family members who are active are spread too thin. Family members, especially those with young children with severe emotional disturbances, face many barriers to being able to actively participate in and contribute to these groups. The largest impediment is the time it takes away from childcare and/or work. Other barriers include:

• Family crises that need attention. • Inadequate reimbursement. • Personal mental health issues. • Lack of understanding of how the system works.


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• Lack of understanding of the limitations of the group to effect system change. • Personal qualities: lack of confidence, shyness, impatience. • Communication styles: inarticulate, unfocused, belligerent.

Supports to enable family participation do exist. Aids to consumer and family member participation include:

• On-site childcare. • Payment for time spent.

• Reimbursement that is considered adequate by members.

Family members benefit from seeing the tangible results of their participation; direct, positive, feedback from professionals, and hearing professionals who are family members share their stories.

Whether a family member is new to the system or is experienced makes a difference in the quality and level of their participation. As portrayed in Maslow’s hierarchy of needs, less experienced family members are likely to have immediate needs that must be addressed before they can be expected to focus on longer-term policy issues. These include:

• Tools and strategies for dealing with their children.

• Peer encouragement and support.

• Information on what services are available to them.

• Information on how to choose among service providers and how to make substitutions if necessary.

Those consumers and family members with older children (or grandparents) who are experienced with the system and how their group operates are in a better position than others to actively participate in policy making. Some consumers and family members are not as outgoing and assertive as others, yet it is important to capture their input as well as that of the more vocal group members. All of these groups are funded by time-limited grants rather than ongoing legislative allotments. This lends a sense of uncertainty to all activities.

The move to include family members in system of care decision making can claim many successes and this study indicates ways to expand this success. Recommendations are presented in the report’s final section.


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Recommendations

Many of these recommendations come from study respondents. Others follow from the conclusions presented above. 1. It is very difficult for many family members to leave their homes or take time

off from work. This study’s analyst found that family respondents had extremely valuable ideas but that attending meetings might not be the best way to take advantage of them. The Federation and other groups should explore ways to obtain consumer and family input outside of group meetings. For example, an experienced family member may be assigned to contact other family members, solicit their input on issues. and share it at the next group meeting. The responsibility could be rotated among family members. Another option might be to have a dedicated Family Involvement Coordinator solicit input from families and bring it back to meetings. Solutions will depend on the individual group characteristics and need to be developed by the groups themselves.

2. Institute formal mentoring in all groups. Match more experienced family

members with family members that are new to the system to act as mentors and to encourage and support their involvement.

3. Make attracting additional family members a high priority. Brainstorm with

more experienced family members on how to attract more group members. Share recruitment methods among the groups.

4. Offer training for family participants that includes:

• How the system works in a particular community and how the group fits into the picture.

• The group’s opportunities to effect change and its limitations.

• Communication skills—how to effectively get their messages across, how to handle disagreements diplomatically, and how to ask hard questions. If possible, have a consumer or family member deliver part of the training.

5. Make sure family members know their contributions are appreciated:

• Professionals should provide direct, sincere, positive feedback to consumers and family members that had an impact on them.

• Document and specifically acknowledge the value of consumer and family participation.

6. Professionals and family members who “wear two hats” should clarify the

position they are coming from during group discussions.


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7. Understand that families in crisis will need services before they can make contributions to the group. Set aside a specific time outside of the meeting time to provide this support.


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Appendix

Family Member/Consumer Questionnaire 1. How did you first become a member of (name of group)? 2. When did you become a part of (name of group)? 3. What do you understand as the purpose of (name of group)? 4. What do you consider your role to be within (name of group)? 5. How active a group member are you ? Would you describe yourself as: (READ LIST)

a. Very active? b. Moderately active? c. Slightly active? or d. Not at all active?

5A. (IF SLIGHTLY/MODERATELY/VERY ACTIVE) In what ways have you participated in (name of group)? (PROBE & CLARIFY)

5B. (IF NOT AT ALL ACTIVE) Why is that?

6. Using a scale from 1 to 4, where 1 is “not at all active” and 4 is “very active,” how active are you in: (READ LIST; CIRCLE RATING FOR EACH ITEM )

a. Policy, planning, and evaluations? (1 2 3 4) b. Management and governance? (1 2 3 4) c. Training? (1 2 3 4) d. Family support? (1 2 3 4) e. Community organization and education? (1 2 3 4) f. Research about children and families? (1 2 3 4) 7. How often does (name of group) have meetings?

a. Weekly b. Biweekly c. Monthly d. Quarterly


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e. Yearly 8. How often do you attend group meetings?

a. Always b. Frequently c. Occasionally d. Seldom e. Never 8A. (IF OCCASIONALLY/SELDOM/NEVER) Why is that? (PROBE &

CLARIFY)

9. During group meetings, would you say that you regularly, often, sometimes, or never: (READ LIST; CIRCLE RESPONSE FOR EACH ITEM)

a. Enter into discussions? Regularly Often Sometimes Never b. Place items on the agenda? Regularly Often Sometimes Never c. Introduce topics under “new business”? Regularly Often Sometimes Never d. Make formal motions? Regularly Often Sometimes Never e. Present draft position statements for the group to review? Regularly Often Sometimes Never f. Disagree with others, including professionals? Regularly Often Sometimes Never g. Accept responsibility for a task? Regularly Often Sometimes Never

10. How satisfied are you with the influence you are able to have in group meetings Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 10A (IF LESS THAN VERY SATISFIED) Why do you say that?

11. Do you now, or have you ever served on any boards, subcommittees, or other subgroups for (name of group)?

a. Yes, currently (SPECIFY____________) b. Yes, in the past (SPECIFY____________) c. No 11A. (IF NO) Why not?

12. Have you ever been an officer or held a leadership position in (name of group)?


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a. Yes, currently (SPECIFY____________) b. Yes, in the past (SPECIFY____________) c. No, chose not to hold office (Why?_________________________) d. No, never volunteered or been asked e. Other (SPECIFY____________)

13. What kind of support is offered by (name of group) to enable you to attend meetings, or participate on boards, subcommittees or other subgroups? (READ LIST; CIRCLE ALL THAT APPLY)

a. Child care/respite care? b. Mentoring? c. Payment for time or services? d. Travel reimbursement for meetings? or e. Other support (specify) _____________

14. How satisfied are you with the kinds of support offered to enable you to attend meetings, or participate on boards, subcommittees, or other subgroups? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied?

15. What kind of additional support, if any, would make it easier for you to attend meetings or participate on boards, subcommittees, or subgroups?

16. How important is the work that (name of group) does? Would you say it is: (READ LIST)

a. Very important? b. Moderately important? c. Slightly important? or d. Not important? 16A. Why do you say that?

17. How important is for you to have a say in the decisions that are made by the group? Would you say it is: (READ LIST)

a. Very important? b. Moderately important? c. Slightly important? or d. Not important?


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17A. Why do you say that?

18. In your opinion, what are some of (name of group’s) important accomplishments over the past year? (PROBE & CLARIFY)

18A. (FOR EACH ACCOMPLISHMENT) In what ways, if any, did you assist the group

to achieve this accomplishment?

19. Considering your overall experience with (name of group), how much influence on the group’s decision-making do you have? (READ LIST)

a. A lot? b. Some? c. Little? or d. None?

20. Compared to other members of the group, do you feel you have more influence or less influence? Would you say you have: (READ LIST)

a. Much more? b. More? c. About the same? or d. Less? (Why do you say that?)______________________________ e. (DO NOT READ) Don’t know f. (DO NOT READ) Consumers or families haven’t made recommendations

21. In general, how responsive is this group to the issues raised by consumers and

family members? Would you say it is: (READ LIST)

a. Very responsive? b. Moderately responsive? c. Slightly responsive? or d. Not responsive? e. (DO NOT READ) Don’t know

22. How often have recommendations made by the consumers or family members in

this group been accepted? (READ LIST)

a. Regularly? b. Often? c. Sometimes? or d. Never?


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23. Can you describe any examples when consumer or family members were involved in a problem or decision confronting this organization? ( PROBE: What was the outcome?)

24. How satisfied are you with your ability to impact (name of group’s) programs and policies? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 24A. Why do you say that? (ASK FOR SPECIFIC EXAMPLES)

25. In your opinion, what impact have you had on (name of group’s) programs or policies? (PROBE & CLARIFY)

26. Considering your overall experience with the professionals who are members of this group, what is their attitude toward consumer and family membership and participation? (READ LIST)

a. Generally positive? b. Somewhat positive? c. Somewhat negative? or d. Generally negative?

26A. Please describe either positive or negative behaviors on the part of professionals that let you know how they feel about you as a consumer or family member. (PROBE & CLARIFY)

27. How satisfied are you with your ability to impact the attitudes or behaviors of professionals within (name of group) Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied?

27A. Why do you say that? (ASK FOR SPECIFIC EXAMPLES)


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28. What examples, if any, can you share where consumers or family members within

(name of group) influenced how mental health services are delivered? (PROBE & CLARIFY)

29. Have you been provided with any training to assist you with participating in policymaking?

a. Yes b. No

29A. Please describe this training. (PROBE & CLARIFY) 29B. How useful would you describe this training? a. Very useful b. Somewhat useful c. Not at all useful 29C. Why do you say that? (PROBE & CLARIFY)

30. What additional suggestions or comments would you like share before we close?


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Family Member/Consumer Demographics Listed below are some standard demographic questions. They will be used for classification purposes only. 1. Your sex: a. male b. female 2. Your race: a. White b. Hispanic/Latino American c. Asian/Pacific Islander d. Black/African American 3. Your relationship status: a. Married or marriage-like living situation b. Single c. Divorced d. Separated e. Widowed 4. Your household income: a. <$20,000 b. $20,000 - $29,999 c. $30,000 - $39,999 d. $40,000 - $49,999 e. $50,000 - $59,999 f. $60,000 - $69,999 g. $70,000 or more 5. Your education: a. Some high school or less b. High school diploma or GED c. Business or trade school d. Some college e. College degree f. Some graduate school g. Graduate degree 6. Your age: ______


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Professional Questionnaire

1. How long have you been involved with (name of group)?

2. How would you describe the mission of (name of group)? 3. Overall, how actively involved are consumers and families in the decision-making

of (name of group)? Would you say they are: (READ LIST)

a. Very active? b. Moderately active? c. Slightly active? or d. Not at all active?

4. How important is it to the success of (name of group) that consumers and families are involved in decision-making? Would you say it is: (READ LIST)

a. Very important? b. Moderately important? c. Slightly important? or d. Not important? 4A. Why do you say that? (PROBE & CLARIFY)

5. How satisfied are you with the number of consumers and family members that attend (name of group) meetings? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied?

d. Very dissatisfied?

6. How satisfied are you with the level of participation of consumers and family

members that attend (name of group) meetings? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 6A. (IF LESS THAN VERY SATISFIED) Why do you say that?


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7. How satisfied are you with the number of consumers and family members that serve

on (name of group) boards, subcommittees or participate in other subgroups? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 8. How satisfied are you with the level of participation of consumers and family

members that serve on (name of group) board, subcommittees, or participate in other subgroups? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or

d. Very dissatisfied?

8A. (IF LESS THAN VERY SATISFIED) Why do you say that?

9. Considering your overall experience with your organization, how much influence do consumers and family members have on (name of group’s) decision-making? (READ LIST)


10. How often have recommendations made by the consumers or families in (name of group) been accepted? (READ LIST)

a. Regularly? b. Often? c. Sometimes? or d. Never? e. (DO NOT READ) Don’t know f. (DO NOT READ) Consumers or families haven’t made recommendations

11. In general, how responsive is (name of group) to the issues raised by consumers and family members? Would you say it is: (READ LIST)

a. Very responsive? b. Moderately responsive?


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c. Slightly responsive? or d. Not responsive?

12. What examples, if any, can you share where consumers or family members

influenced decision-making or had an impact on (name of group’s) programs or policies? (PROBE & CLARIFY)

13. In general, what impact, if any, has consumer and family participation within (name

of group) had on you? (PROBE & CLARIFY) 14. What examples, if any, can you share where a consumer or family member within

(name of group) influenced your opinion or attitude towards an issue? (PROBE & CLARIFY)

15. What examples, if any, can you share where a consumer or family member influenced a decision you made or action you took? (PROBE & CLARIFY)

16. What examples, if any, can you share where a consumer or family member within

(name of group) had an impact on your professional practice, the way you deliver services, or the way you do your job? (PROBE & CLARIFY)



18. What, if any, are the disadvantages to involving consumers and family members in

decision making? 19. Have you had any formal training in how to incorporate family involvement into

decision making? (IF YES, DESCRIBE) 20. Do you have any other thoughts or comments on the topic of consumer and family

involvement and its impact that you’d like to share?


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Chairperson Questionnaire

1a. Briefly, how would you describe the mission of (name of group)?

1b. How long has (name of group) been in existence?

2. What is the composition of your organization between consumers or family

members and professionals? ____ % Consumers/family members ____ % Professionals 3. How frequently do you have group meetings?

a. Weekly b. Biweekly c. Monthly d. Quarterly e. Yearly

4. Among the members that regularly attend meetings, what percentage are consumers or family members versus professionals?

____ % Consumers/family members ____ % Professionals

5. What percentage of the total consumer/family membership regularly attend

meetings? ____% Consumers/family members

6. How satisfied are you with the number of consumers and family members that attend meetings? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied


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7. How satisfied are you with the level of participation of consumers and family

members that attend meetings? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 7A. (IF LESS THAN “VERY SATISFIED”) Why do you say that?

8. What percentage of the total consumer/family membership serve on boards or subcommittees or participate in other subgroups?

9. How satisfied are you with the number of consumers and family members that serve

on boards, subcommittees, or participate in subgroups? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied

10. How satisfied are you with the level of participation of consumers and family members that serve on boards, subcommittees, or participate in subgroups? Would you say you are: (READ LIST)

a. Very satisfied? b. Somewhat satisfied? c. Somewhat dissatisfied? or d. Very dissatisfied? 10A. (IF LESS THAN “VERY SATISFIED”) Why do you say that?

11. What kind of support is offered to consumers or family members that attend

meetings, or serve on boards, subcommittees, or subgroups? (READ LIST; CIRCLE ALL THAT APPLY)

a. Child care/respite care? b. Mentoring? c. Payment for time or services? d. Travel money for meetings? e. Other support? (specify) _____________ f. (DO NOT READ) None at this time


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12. What additional kinds of support, if any, are being considered?

13. Using a scale from 1 to 4, where 1 is “not at all active” and 4 is “very active,” how active are consumers and family members in: (READ LIST; OBTAIN RATING FOR EACH ITEM )

a. Policy, planning, and evaluations ? (1 2 3 4) b. Management and governance? (1 2 3 4) c. Training? (1 2 3 4) d. Family support? (1 2 3 4) e. Community organization and education? (1 2 3 4) f. Research about children and families? (1 2 3 4)

14. Overall, how actively involved are consumers and families in the decision-making

of this organization? Would you say they are: (READ LIST)

a. Very active? b. Moderately active? c. Slightly active, or d. Not at all active?

15. How important is it to the success of (name of group) that consumers and families are involved in decision-making? Would you say it is: (READ LIST)

a. Very important? b. Moderately important? c. Slightly important? or d. Not important? 15A. Why do you say that? (PROBE & CLARIFY)

16. What steps have you taken, if any, to involve consumers and family members in decision-making? (PROBE & CLARIFY)

17. Over the past year, what have been the major accomplishments of your

organization? (LIST)

17A. (FOR EACH ACCOMPLISHMENT) How did consumers and families

contribute to the achievement of this accomplishment?


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18. Considering your overall experience with (name of group), how much influence do consumers and family members have on the group’s decision-making? (READ LIST)


19. How often have recommendations made by the consumers or families in this group been accepted? (READ LIST)

a. Regularly? b. Often? c. Sometimes? or d. Never? e. (DO NOT READ) Don’t know f. (DO NOT READ) Consumers or families haven’t made recommendations

20. In general, how responsive is this group to the issues raised by consumers and family members? Would you say it is: (READ LIST)

a. Very responsive? b. Moderately responsive? c. Slightly responsive? or d. Not responsive? e. (DO NOT READ) Don’t know

21. Considering your overall experience with the professionals who are members of (name of group), what is their attitude toward consumer and family membership and participation? (READ LIST)

a. Generally positive? b. Somewhat positive? c. Somewhat negative? or d. Generally negative?

21A. Please describe either positive or negative behaviors on the part of professionals that let you know how they feel about consumer or family participation. (PROBE & CLARIFY)

22. In general, what impact, if any, has consumer and family participation within (name of group) had on you? (PROBE & CLARIFY)


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23. What examples, if any, can you share where a consumer or family member influenced a decision you made or action you took? (PROBE & CLARIFY)

24. What examples, if any, can you share where consumers or family members

influenced decision making or had an impact on (name of group’s) programs and policies? (PROBE & CLARIFY)



26. Do you have any other thoughts or comments related to consumer and family

involvement and its impact on your organization that you’d like to share?

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