Defining
Family-Driven Care
 In
July of 2003, the President's
New Freedom Commission on Mental Health issued its Final
Report: Achieving the promise: Transforming mental health care in
America. The Commission was asked to study problems in the current
mental health delivery system, and to make recommendations for improvements
that could be implemented immediately. The final report identified
a series of goals and recommendations that Commission's members
believed should serve as the basis for reforming the mental health
system in America. A key theme of the report is that transformation
requires mental health care that is "consumer and family driven."
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, however, did not define family
driven.
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 decision 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 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,
act and interact in new ways, feel comfortable with shared responsibility
for decision making; and 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 the first and
most necessary step toward making this paradigm shift.
Development
of a Definition
In the spring of 2004, the Federation of Families for Children's
Mental Health was asked to lead a process
to develop a definition of family driven. Staff from the
Federation, working closely with staff from the Child, Adolescent
and Family Branch of the Center for Mental Health Services, organized
a series of events and activities to solicit feedback on the evolving
definition. Below, you will see the most recent version of the definition,
together with lists of guiding principles and characteristics of
family-driven care. However, we recognize that this will not be
the final product in this process, and we anticipate that further
iterations will be developed as the service system evolves to embrace
the concept.
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:
- choosing
supports, services, and providers;
- setting goals;
- designing
and implementing programs;
- monitoring
outcomes; and
- determining
the effectiveness of all efforts to promote the mental health
of children and youth.
Guiding
Principles of Family-Driven Care
- Families
and youth are given accurate, understandable, and complete information
necessary to make choices for improved planning for individual
children and their families.
- Families
and youth are organized to collectively use their knowledge and
skills as a force for systems transformation.
- Families
and youth embrace the concept of sharing decision-making and responsibility
for outcomes with providers.
- Providers
embrace the concept of sharing decision-making authority and responsibility
for outcomes with families and youth.
- Providers
take the initiative to change practice from provider-driven to
family-driven.
- Administrators
allocate staff, training, and support resources to make family-driven
practice work at the point where services and supports are delivered
to children, youth, and families.
- Families
and family-run organizations engage in peer support activities
to reduce isolation and strengthen the family voice.
- Community
attitude change efforts focus on removing barriers created by
stigma.
- Communities
embrace and value the diverse cultures of their children, youth,
and families.
- 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
- 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.
- 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.
- 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.
- Administrators
and staff actively demonstrate their partnerships with all families
and youth by sharing power, resources, authority, and control
with them.
- 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.
- All children,
youth, and families have a biological, adoptive, foster, or surrogate
family voice advocating on their behalf.
We invite you
to participate in the ongoing evolution of the concept of family
driven by posting your comments, ideas, or suggestions related to
the definition or its implications. We appreciate your feedback!
Trina W. Osher,
Director of Policy & Research for the Federation of Families
for Children's Mental Health, and
Gary Blau, Chief, Child, Adolescent and Family Branch, Center for
Mental Health Services
As always, we encourage you to post your thoughts
and comments.
Your thoughts…
Comments:
 Who really now is engaged in the control of health? To mine it neglected the large pharmaceutical companies and the medical centers. There should be a centralized management WBR LeoP Posted Friday, January 19, 2007 at 04:57 PM
I consider myself generally supportive of the ideal that families should be allowed to control treatment decisions to the greatest extent possible-- that the role of professionals is more to help them make the best decisions they can. Still, I sometimes feel that we have developed our own version of political correctness about all this in that the people who represent "families" in these discussions are not necessarily typical of people we encounter in services. Mostly they are much better educated and better off, but even more importantly, they are people who basically have their lives together. In our system 60% of the children in mental health services are in temporary or long-term foster care due to abuse or neglect, with many of their families of origin highly dysfunctional. While we have many excellent foster parents, there are also others who either don't really have the time/energy to become informed "drivers" of services or really may not have the best interests of the child as their number one priority. I think when we push this sort of information under the carpet we build the resentment of providers towards an important idea. How can we be more real about this without going backwards? Posted Monday, February 14, 2005 at 10:50 AM
I followed the advice of the last person and looked at the principles of Wraparound article. I agree that it is very useful for thinking about how family driven might work when there are challenging circumstances. It talks about "balancing the collaboration" and how that balance has to change depending on what's going on in each case. Posted Tuesday, January 25, 2005 by wraparound veteran at 11:37 AM
I think the two comments I just read point to some remaining confusion over what the term means. As a consumer, I do want to direct my treatment as I understand the concept. I hope that clinicians will be able to determine what is causing my symptoms and give me most accurate up-to-date information on the options available to me. Unless my decision were to become a public health risk (to many or few), I would be free to choose the option most compatible with my wishes, e.g., operation vs. no operation, medication vs. exercise/diet, medication vs. continuing symptoms, treatment or food for family. Sometimes the clinician may not believe I am making the best decision and would advise me so, but I would be allowed to decide - except in extreme cases. I would also expect that the clinician respects my right to determine my own priorities and willingly works with me to present me with the best options that fit my priorities. It seems as if we are basically questioning a family's capacity to make decisions based on its own priorities if we question the concept of family-driven care. Posted Friday, January 21, 2005 by Diana Marek, MBA, RN at 12:22 PM
The points Betsy makes both tap into important concerns or themes that are entwined with debates about the balance of power in making decisions about care. The narrowing of treatment options-- either through limiting care to medical necessity OR to only evidence based practices--tends to weigh the opinions of professionals over those of families, and to prescribe care that is less, rather than more individualized. For the second question, I think that the definition does not say "give all the power to the family," rather it says "give the family good information and partnership to make decisions." Most people would prefer to base their decisions on good information (assuming they feel the source of the info is trustworthy) than bad information, and would not make the same choice if they knew that their sniffle was a symptom of dangerous infection rather than a cold. Even more extremely, there may be people who would choose to venture out into the world even if they had a deadly infection-- endangering others by their choice. Even in this case, I don't think that family-driven endorses a person's right to do whatever they choose-- all of us act within constraints. The physician hearing resistance might feel the need to make a call to public health authorities, who have a mandate from society to prefent the spread of dangerous infections. Posted Thursday, January 20, 2005 at 01:27 PM
The ideals expressed in the definition of family-driven care are to be commended. My comments are concerns that I run into on a daily basis.
1. Even as the System of Care movement is broadening the definition of family driven care, using the President's Freedom Commission as a spring-board, the federal government is narrowing the definition of "medically necessary" care and challenging the Medicaid capitation system that allows for more flexible use of funding. These two movements are moving in opposite directions.
2. Do we really want "family driven" care? When I go to the doctor, I don't really want "family driven" care. I want a mutual relationship where the doctor contributes a significant part of the expertise and I contribute the particulars about my own situation. I don't always know what is best for me and my family. Sometimes I think that we just need to stay at home and nurse a cold, when it is actually a dangerous infection that needs medication. Sometimes I want immediate medical attention for a crisis and find out it is indigestion. In mental health services the diagnosis and treatment is not as clear as in medical services. However, the blending of the family's experience and perspective and the professional experience and perspective is necessary to get closer to a good outcome. I don't really agree with the concept of "family driven" either as a consumer or a provider. It sets up an adversarial tone that minimizes the professional input necessary for good decision-making. Is this an overcompensation we have to make to balance the abuses inherent in the system? It will have its own costs. In our wraparound project, we are talking about "team driven" care. I hope that leads to empowerment for the family as well as effective treatment. Posted Thursday, January 20, 2005 by Betsy Rogers, LCSW at 12:49 PM
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