Systems of Care - Family Driven

The federally funded Comprehensive Community Mental Health Services Program for Children and Their Families is supported by a number of technical assistance, evaluation, research and training centers. Leaders from these projects, representatives from the funded communities, and staff from the Child, Adolescent and Family Branch of the Center for Mental Health Services, comprise the Council for Collaboration and Coordination which is known generally as the CCC¹. At its Spring meeting in 2004, the CCC recognized the need for a clear definition of the term “family-driven” for use by systems of care and asked the Federation of Families for Children’s Mental Health to take the lead in developing one. Trina W. Osher, Director of Policy & Research for the Federation was assigned the task and David Osher, Managing Research Scientist at AIR and a Federation member was asked to contribute his time as a partner in the work. Activities were supported by Gary Blau, Chief, Child, Adolescent and Family Branch through his participation and with funds from the Branch.

Need for a Definition of Family Driven Care

The President’s New Freedom Commission on Mental Health issued its report Achieving the Promise in 2003. Goal 2 of that report envisions a transformed services system in which “mental health care is consumer and family driven.” In its explanation for including this recommendation, the Commission stated that, “Consumers and families told the Commission that having hope and the opportunity to regain control of their lives was vital to their recovery.” The report cited research validating that hope and self-determination are important factors contributing to recovery. The Commissioners stated emphatically that families “must stand at the center of the system of care” and the needs of children, youth, and families must “drive the care and services that are provided.” The report does not define family driven but includes five recommendations that indicate the scope of what they had in mind. The five recommendations were:

Why Promote Family-Driven Care?

The experiences of families, youth consumers, and family oriented practitioners echo the findings and recommendations of the New Freedom Commission report. They know that when families are fully engaged and have an influential voice in decisions making the outcomes are better.

Families know what works for them and it therefore makes sense that they drive service delivery decisions. Their experience is holistic, not segmented by disciplines or service systems, and grounded in the challenges they face all day and every day. They know their own limitations and the environmental constraints they face. They also know their and their child’s strengths. Families can keep track of change in how they or their child are doing on a daily basis or how a program, agency, or system is performing over time. And, perhaps most importantly, without family comfort and buy-in, children and youth do not participate in services. In the public advocacy arena, family voices have credibility and their passion and persistence are necessary to achieve and to sustain transformation.

Their experience is holistic and grounded in the challenges they face every day. They know their own limitations and the environmental constraints they face. Families can keep track of change in how they or their child are doing on a daily basis or how a program, agency, or system is performing over time. And, perhaps most importantly, without family comfort and buy-in, children and youth do not participate in services. In the public advocacy arena, family voices have credibility and their passion and persistence are necessary to achieve and to sustain transformation.

For programs, agencies, and systems to provide family-driven care, there must be a paradigm shift, and there must be administrative support to change behaviors and relationships. Everyone, families and providers alike, needs help to view the decision making process differently, to act and interact in new ways, to feel comfortable with shared responsibility for decision making; and to own and believe in a family-driven as the right way of working together. Developing, promoting, and supporting a commonly accepted definition of family-driven is a necessary step toward making this paradigm shift.

STEPS in the Process:

The process for developing the definition was both linear and iterative. It was linear in that there was a specific sequence of activities and iterative in that feedback from each activity was used to create a new draft of the definition for use in the next activity. The sequenced activities began with forming an expert panel and interviewing recognized leaders in the family movement. These two activities informed the development of an initial draft definition, that formed was used to stimulate feedback in open forum discussions. Additional feedback from staff of the Child, Adolescent and Family Branch and a variety of audiences around the country were incorporated into eight drafts during Fall 2004. The Family Work Group of the CCC held a conference call to discuss the definition and provided a number of specific suggestions. After these suggestions were incorporated, the draft was sent out for additional feedback from the expert panel, and their comments were incorporated as well. By February of 2005, we had arrived at the Working Definition of Family-driven Care that is attached.

Expert Panel

An expert professional and family panel was organized. It consisted of eight individuals selected for their expertise, cultural diversity, varying perspectives based on their training or role, and geographical distribution. Panel members were asked to provide initial input via conference calls and later to make comments drafts of the definition. A research assistance took notes, and these notes were the basis of the first draft. Those whose time was not covered by a SAMHSA project received a $300 honorarium for their contributions to this project. The panel members were: Pedro Moralaes (San Juan, PR), Chey Clifford (Portland, OR), Sai-Ling Chan-Sew (San Francisco, CA), Joyce Burrell (Washington, DC), Lisa Brown (Pittsburgh, PA), Roberta Paez (Albuquerque, NM), Tony Tratamonto (Phoenix, AZ and Burlington, NJ), and Arleata Snell (Bethl, AK).

Open Forum Discussions Held At Training Institutes

The initial draft definition with a request for feedback was distributed at the Training Institutes held in San Francisco in June 2004. In addition, two facilitated open forum discussions were held. These were attended by about 30 family members, policy makers, administrators, service providers, and advocates. Notes were kept of these discussions and used to formulate the next draft.

Literature Search

Alison Davidson, a research assistant at AIR, conducted a search of the literature and procured copies of relevant articles and documents. A list of these is attached as Appendix B.

Iterative Feedback

Feedback was solicited from system of care communities and family-run organizations. In addition, reactions from a variety of audiences was obtained by giving presentations and taking questions at a number of national and state conferences, training events, and meetings. Table I lists the major events along with their dates, locations, and the participants.

Key Decisions Along the Way

Broadening the Scope

The original charge from the CCC to the Federation was to develop a definition of family-driven for use in systems of care and a white paper to support the definition and promote its use in federally funded system of care communities. During the very first conversation with the expert panel, it became clear that this charge was too narrow in scope. Feedback from experts, the leaders talked with, and the open forum discussion groups at the Training Institutes led to redirecting the effort to developing a definition that could be used to transform delivery of children’s mental health care regardless of the discipline or type of program that serves the child and family. The title was changed to “family-driven care.” Families responded well to this change because it meant the definition and new role could be applied in many more settings and not be available only to those families fortunate enough to get services from a federally funded system of care program. Gary Blau, Chief of the Child, Adolescent, and family Branch of the Center for Mental Health Services also endorsed this approach.

The definition was deliberately presented, and discussions held, with individuals and groups in a wide range of disciplines that touch on children’s mental health even if they don’t see it as a primary responsibility. These conversations and the feedback that resulted were critical to making sure that the language and approach were understandable and acceptable to providers, administrators, and policy makers in juvenile justice, child welfare, substance abuse, education, state planning, and financing as well as mental health.

The Role of Youth

It was a struggle deciding how to include youth in a family-driven care model. There was widespread agreement that youth needed to have a voice not only because mental health care is for and about them and their needs, but because without their understanding, cooperation, input, and buy-in, implementation of any plan or policy is not likely to be successful. Early versions of the definition extensively incorporated language about youth along with families. Discussions with Gary Blau and leaders in the youth movement led to the conclusion that youth should have their own voice in processes affecting their care and the systems that serve them. The development of a description of their role should be a separate activity led by youth themselves. Once it was clear that the Child, Adolescent and Family Branch was going to organize a youth led work group for this purpose, developing this definition focused solely on the role of adult family members. However, the definition still included youth in the principles and characteristics of family-driven care where necessary to insure that adult family members took on some responsibility for insuring that youth have opportunities to participate and to get the information, the training, and the support necessary to do so.

Including Principles and Characteristics

The first draft of the definition was a short paragraph only. Attached to it were themes from the expert panel discussion and a list of some characteristics the expert panel identified as key elements of family-driven systems of care. From the open forum discussions at the Training Institutes and the first presentations to other groups, it became clear that audiences did not fully understand the definition without also learning what principles were behind it and having some idea of what family-driven care would be like in operational terms. Later versions, therefore, included guiding principles and characteristics and discussions were employed to solicit feedback that helped to clarify these elements as well.

Disseminating and Implementing the Definition

A PowerPoint file has been developed for use in introducing audiences to the definition and initiating discussions about implications for it implementation. There is a list of presentations attached as Table I. A Webinar was conducted for the Technical Assistance Partnership and has been archived on their website. The PowerPoint file will be expanded into a curriculum that can be used by families and others to broaden awareness of the definition and promote is adoption and use.

A feature of presentations on the definition developed for various audiences was always an explanation that in this model families were expected to be “safe and responsible drivers.” This meant developing a set of tips for “safe driving” (a driver’s manual of sorts) and clarifying that it was a system responsibility to make sure that families had opportunities to acquire the information and develop the necessary skills to participate effectively in family-driven care. Family drivers, like all other participants in family-driven care, want their “journey” to be safe and successful. Implementing this definition of family-driven will require developing and disseminating additional tools to help families take their responsibility as drivers seriously and help policy makers, program administrators, and practitioners support family so they can be safe drivers. Tips for Safe Driving and Ways to Take the Wheel, attached in Appendix A, were developed as a handouts based on presentations about the definition and could be used in the future to develop an actual guide for families.

Numerous requests (3-4 per month) for copies of the definition of family-driven care, handouts from presentations, the PowerPoint file, and other related materials are received. There are also requests for training workshops, keynote speeches, and panel presentations. These come from family organizations, systems of care communities, professional organizations and associations, and state agencies. Two state agencies have made use of telephone consultation with Trina Osher to talk about technical assistance and training options and “think through” possible strategies for promoting family-driven care through some kind of statewide initiative.

Working Definition of Family-Driven Care

Family-driven means families have a primary decision making role in the care of their own children as well as the policies and procedures governing care for all children in their community, state, tribe, territory and nation. This includes:

ü determining the effectiveness of all efforts to promote the mental health and well being of children and youth.

Guiding Principles of Family-Driven Care

1. Families and youth are given accurate, understandable, and complete information necessary to make choices for improved planning for individual children and their families.

2. Families and youth embrace the concept of sharing decision-making and responsibility for outcomes with providers.

3. Families and youth are organized to collectively use their knowledge and skills as a force for systems transformation.

4. Families and family-run organizations engage in peer support activities to reduce isolation, gather and disseminate accurate information, and strengthen the family voice.

5. Providers embrace the concept of sharing decision-making authority and responsibility for outcomes with families and youth.

6. Providers take the initiative to change practice from provider-driven to family-driven.

7. Administrators allocate staff, training, support and resources to make family-driven practice work at the point where services and supports are delivered to children, youth, and families.

8. Community attitude change efforts focus on removing barriers and discrimination created by stigma.

9. Communities embrace, value, and celebrate the diverse cultures of their children, youth, and families.

10. Everyone who connects with children, youth, and families continually advance their cultural and linguistic responsiveness as the population served changes.

Characteristics of Family-Driven Care

1. Family and youth experiences, their visions and goals, their perceptions of strengths and needs, and their guidance about what will make them comfortable steer decision making about all aspects of service and system design, operation, and evaluation.

2. Family-run organizations receive resources and funds to support and sustain the infrastructure that is essential to insure an independent family voice in their communities, states, tribes, territories, and the nation.

3. Meetings and service provision happen in culturally and linguistically competent environments where family and youth voices are heard and valued, everyone is respected and trusted, and it is safe for everyone to speak honestly.

4. Administrators and staff actively demonstrate their partnerships with all families and youth by sharing power, resources, authority, responsibility, and control with them.

5. Families and youth have access to useful, usable, and understandable information and data, as well as sound professional expertise so they have good information to make decisions.

6. All children, youth, and families have a biological, adoptive, foster, or surrogate family voice advocating on their behalf.


Table I – List of Presentation
Event	Date	Location	Audience
2004 Joint National Conference on Mental Health Block Grant and National Conference on Mental Health Statistics	6/1-4/04	Washington, DC	State mental health and data management administrators, policy makers, state planners, state mental health council members, families and adult consumers
The National Policy Academy on Improving Services for Youth with Mental Health and Co-Occurring Substance Use Disorders Involved with the Juvenile Justice System	6/6/04	Bethesda, MD	Judges, state mental health and juvenile justice administrators, family members, system of care directors
Olmstead Director’s Conference	9/13/04	Washington, DC	State Olmstead Program Directors
Partners in Crisis	9/28-29/04	Yakima, WA	Adult consumers, providers, university faculty, technical assistance providers
SC FFCMH annual conference	10/2/04	Columbia, SC	Families, policy makers, providers, state administrators
Family Court Partnerships: supporting the emotional well being and mental health of children, youth, and families	10/4/04	Washington, DC	Judges, probation officers, prosecutors, public defenders, families, advocates
Medicaid and Mental Health Conference	10/5/04	Baltimore, MD	State Medicaid personnel, families, providers, advocates
Community Connections Policy Training	10/16/04	Pittsburgh, PA	Family members, youth
AACAP	10/18/04	Washington, DC	Child and adolescent psychiatrists and mental health providers
National Council for Community Behavioral Healthcare	10/21/04	Alexandria, VA	Executive Directors and organization's Board
TTA on MH in Schools	11/3/04	Ft. Lauderdale, FL	State and county mental health and education administrators and staff, families, advocates
Carter Center Forum	11/10/04	Atlanta, GA	Policy makers, researchers, advocates, state administrators, providers, families, advocates
NY Coalition for Mental Health	11/11/04	Saratoga, NY	Providers, policy makers, families and adult consumers
NRI Family Work Group on Evidence Based Practice	11/14/04	Alexandria, VA	Families, Children’s MH Directors
Juvenile Justice and Mental Health Policy Academy (follow-up)	11/17/04	Albuquerque, NM	Case managers, intake workers, probation officers, state agency staff, mental health providers, families
CCBD	11/19/04	Tempe, AZ	Special education researchers, administrators, teachers, and University faculty
Federal National Partnership	11/22/04	Washington, DC	Federal agency personnel, families, system of care administrators and providers, technical assistance providers
Cooperative Extension Service	11/30/04	over 250 down-link sites nation-wide	Families, mental health professionals, educators, and cooperative extension staff
FFCMH Annual Conference	12/10/04	Washington, DC	Family members, providers, policy makers, advocates
Annual Juvenile Justice Conference of Maryland	1/11/05	Arnold, MD	Mental health and juvenile justice professionals and policy makers, families and advocated
Reclaiming Futures	1/26/05	San Diego, CA	Robert Wood Johnson foundation grantees
Winter System of Care Community Meeting	2/6/05	Dallas, TX	System of care community personnel, family members, and their guests
USF 18^th Annual Research Conference	3/5/05	Tampa. FL	Mental health researchers and students, family members, policy makers, program administrators, service providers
18^th Children’s Interagency Training Conference - CASSP	5/4/05	State College, PA	Family members and youth, policy makers, providers, administrators, in mental health, juvenile justice, child welfare, and education
Empowering Families in Systems of Care – Delaware FFCMH	5/8/05	Dover, DE	Family members and their system of care partners in all child service systems
New Freedom Commission, Kansas Summit on Implementation of Goal 4	5/11/04	Rock Springs, KS	Community mental health agencies, families, youth, advocates, state policy makers
Helping Our Children Get What They Need - PACCT	5/19/05	Fredericksburg, VA	Family members and advocates, mental health, child welfare, and juvenile justice providers and administrators
Joint National Conference on Mental Health Block Grant and Mental Health Statistics	5/31/05	Crystal City, VA	State planners, family members, CMHS personnel
Justice for All - NMHA Annual Conference	6/10/05	Washington, DC	Mental health advocates, consumers, family members, youth, and policy makers
Building on Family Strengths” Research and Services in Support of Children and Their Families	6/23/05	Portland, OF	Researchers and students, mental health advocates, family members and youth, providers and policy makers concerned with children’s mental health
Wraparound Oregon Launch	9/13-14/05	Portland, OR	System partners, project staff, families
57^th Institute on Psychiatric Services	10/9/05	San Diego, CA	Psychiatric services providers
FFCMH Annual Conference	11/19/05	Washington, DC	Families, system of care partners, policy makers

Appendix A

TIPS for Safe Driving

Warning

Plan with Care

Drive with Care

Take Precautions

Help Others

Ways to Take the Wheel --- at the start

ƒ Ask about including other agencies involved with your child and family and getting relevant information from them (such as an IEP).

ƒ Ask for explanations of all options and ask for the support your family would need to make things work for your child.

ƒ Request services that teach your child how to adapt successfully in their schools and communities.

Ways to Take the Wheel --- as things move along

ƒ Find out about all opportunities to participate in planning and advocate for your child’s and your family’s services and supports.

ƒ Consult with professionals to learn the evidence about the kinds of treatments, services, and supports that can help achieve your goals.

ƒ Seek opportunities to develop new skills to build (or rebuild) and sustain good relationships with your child.

ƒ Insist on making discharge, and aftercare plans for reintegration into the community at the outset of out-of-home care.

ƒ Ask for help to find the right services and providers and funding to pay for them.

Ways to Take the Wheel --- sustaining gains

ƒ Request services that support your child’s gains and will help insure they continue to adapt successfully in their schools and communities.

ƒ Ask for supports that can help your family cope with the stress at home – including support for siblings.

ƒ Insist on services that build on your child’s and family’s strengths and counterbalance risk factors.

Ways to Take the Wheel --- at a Judicial Proceeding

ƒ Find a family advocate attached to the court or other knowledgeable and trustworthy person who can help you learn what you need to know and prepare for court.

ƒ Ask for a description of the courtroom and the court proceedings before hand – including any security measures you are likely to encounter.

ƒ Request transportation, child care, and qualified, professional translators (if necessary) so you can fully participate in the hearing.

Appendix B

List of articles, paper,s and journals Reviewed.

2002 Roles patients and families can play in changing policy and practice in Advances in family-centered care. Institute for Family-Centered Care, Bethesda, MD.

1998 Kevin Callahan, Joyce Rademacher, and Bertina L. Hildreth. The effect of parent participation in strategies to improve the homework performance of students who are at risk in Remedial and special education. Pro-ed, Austin, TX.

Carl J. Dunst, Carol M. Trivette, Nancy Gordon, and Lynda L Pletcher. Building and mobilizing informal family support networks

1994 Carl J. Dunst. Family-centered intervention practices: beyond rhetoric toward better operationalization presentation at 11th Annual Smoky Mountain Winter Institute, Ashville, NC.

1997 Carl J. Dunst. Conceptual and empirical foundations of family-centered practice in R. Illback, D. Cogg, & H. Joseph, Jr. (Eds.) Integrated services for children and families: Opportunities for psychological practice. American Psychological Association, Washington, DC.

1998 Carl J. Dunst, Jeffri Borrkfield, and Jackie Epstein. Family-centered early intervention and child, parent, and family benefits.

2000 William Dougherty. Family science and family citizenship: toward a model of community partnership wth families in Family relations.

2000 Carl J. Dunst, Carol M. Trivette, Donna M. Snyder. Family-professional partnerships: a behavioral science perspective in M.J. Fine & R. I. Simpson Collaboration with parents and families of children and youth with exceptionalities. Pro-Ed, Austin, TX.

1996 Lucille Eber, Ruth Osuch, and Carol Redditt. School-based applications of the wraparound process: early results on service provision and student outcomes in Journal of child and family studies. Human Sciences Press, .

1990 Barbara J. Friesen and Nancy M. Koroloff. Family-centered services: implications for mental health administration and research in Journal of Mental Health Administration.

Charles F. Halverston, Jr. and Karen S. Wampler. The mutual influence of child externalizing behavior and family functioning: the impact of a mild congenital risk factor.

2003 Thomas R. Kratochwill, Lynn McDonald, and Joel R. Levin. Families and schools together: and experimental analysis of a parent-mediated early intervention program for elementary school children in . Wisconsin Center for Education Research, School of Education, University of Wisconsin-Madison, Madison, WI.

2001 Lynn McDonald. (draft) Parent involvement as a protective factor to prevent drug abuse for inner-city youth in . Wisconsin Center for Education Research, University of Wisconsin-Madison, Madison, WI.

2002 Kristen Anderson Moore, Roesmary Chalk, Juliet Scarpa, and Sharon Vandivere. Family strengths: often overlooked, bur real in Child trends research brief. Child Trends, Washington, DC.

2004 Anita W. Marshall. A system of care: meeting the mental health needs of children in foster care in Best practice, next practice: child-centered child welfare. National Child Welfare Resource Center for Family-Centered Practice, Washington, DC.

1996 National Technical Assistance Center for Children’s Mental Health. Principles of a family-friendly service system in Families at the center of the development of a system of care. Center for Child Health and Mental Health Policy, Georgetown University Child Development Center, Washington, DC.

2004 National Council on Disability. Consumer-directed health care: how well does it work? Washington, DC.

2004 National Mental Health Self-Help Clearinghouse. Self-advocacy training offers hope to many. Mental Health Association of Pennsylvania, Philadelphia, PA.

2002 Trina Osher and Pat Hunt. Involving families of youth who are in contact with the juvenile justice system in Research and program brief. National Center for Mental Health and Juvenile Justice, Delmar, NY.

1998 David Sexton, Patricia Snyder, Donna Wadsworth, Antoinette Jardine, and James Ernest. Applying Q methodology to investigations of subjective judgments of early intervention effectiveness in Topics in early childhood special education. Pro-ed, Austin, TX.

2004 Margaret Sherraden and Michael Sherraden. Economic development and family support: asset-building and children presentation at 2nd Annual Community Building Think Tank, Chicago, IL.

2000 Carol M. Trivette and Carl J. Dunst. Recommended practices in family-based practices in Recommended practices in Early interventions/early childhood special education. Division for Early Childhood, washington, DC.

in press William Whilde, Michael Boyle, and David Loveland. Recovery from addiction and recovery from mental illness: shared and contrasting lessons in Ruth Ralph and Pat Corrigan (Eds.) Recovery and mental illness: consumer visions and research paradigms. American Psychological Association, Washisngton, DC.

¹The mission of the Council on Collaboration and Coordination is to help the Center for Mental Health Services funded community grant program sites envision and implement comprehensive systems of care for children and their families, through a team process of collaboration which puts the communities at the center of a coordinated approach to technical assistance and support.

Origin of the Project