This Web site is a component of the SAMHSA Health Information Network.

Fall 2001

This paper was supported by Grants 5 UIH SP07974-8047 from the U.S. Department of Health and Human Services (DHHS), the Substance Abuse and Mental Health Services Administration (SAMHSA) and its three centers—the Center for Mental Health Services (CMHS), the Center for Substance Abuse Prevention (CSAP), and the Center for Substance Abuse Treatment (CSAT)—and Casey Family Programs. The national cross-site evaluation data were collected under cooperative agreements with the Starting Early Starting Smart grantees including the data coordinating center—Evaluation, Management, & Training, Inc. in Folsom, CA—which was responsible for the national Starting Early Starting Smart cross-site program evaluation.

Suggested citation:

Casey Family Programs and the U.S. Department of Health and Human Services (2001). Key guide points for partnering with families. Washington, DC: Casey Family Programs and the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration.

Contents

SESS Program Acknowledgments
About These Guide Points: A Foreword
The Guide Points
Advance Planning
Early Encounters
Working Together for the Long Term
About Starting Early Starting Smart
The Study Design
SESS Extended
Summation
The SESS Sites

SESS Program Acknowledgments

Nelba Chavez, Ph.D.
Administrator
Substance Abuse and Mental Health Services Administration
Rockville, MD

and

Ruth Massinga, M.S.
President and CEO
Casey Family Programs
Seattle, WA

along with the Casey Board of Trustees and the three SAMHSA Centers—Center for Substance Abuse Prevention, Center for Substance Abuse Treatment, and Center for Mental Health Services—for their vision and commitment to reaching families with very young children who are affected by environments of substance abuse and mental disorders. Without their innovative public-private partnership and unprecedented support, this initiative would not have been possible.

We further acknowledge the early guidance and program development from Stephania O’Neill, M.S.W.; Rose Kittrell, M.S.W.; Hildy (Hjermstad) Ayers, M.S.W.; Karol Kumpfer, Ph.D.; Sue Martone, M.P.A.; and Jeanne DiLoreto, M.S. In addition, the advisement and investment of the U.S. Department of Education, the Health Resources and Services Administration and the Administration for Children and Families of the U.S. Department of Health and Human Services were critical in this collaboration effort.

Many thanks to the SAMHSA-Casey Team for their tenacious efforts and unprecedented collaboration:

Joe Autry, M.D.
Acting Administrator
Substance Abuse and Mental
Health Services Administration

Jean McIntosh, M.S.W.
Executive Vice President
Casey Strategic Planning and Development

Patricia Salomon, M.D.; Barbara Kelley Duncan, M.Ed.; Michele Basen, M.P.A.; Peter Pecora, Ph.D.; Velva Taylor Spriggs, M.S.W.; Eileen O’Brien, Ph.D.; Jocelyn Whitfield, M.A.

About These Guide Points: A Foreword

One of the goals of the meeting planners was to produce a journal that captured the essence of that convening—from the perspective and in the words of the family members. That powerful document* has been published and is recommended to all readers of these Key Guide Points.

As the draft of the journal evolved, a number of service providers and researchers who read it saw “pearls” that should be captured for all those child- and family-serving individuals and organizations that are earnestly seeking ways to enter into true partnership with families. The “pearls” were drawn from the journal* of the convening, which documented these insights as guide points. They are very pertinent, but they are not exhaustive.

For those who are coming to the “new way of doing business with families” for the first time, it is hoped that the guide points will resonate as common sense and welcomed as new insights. For those who have been “on the journey” for some time, it is hoped that you will say, “I wish someone had given us this when we were starting out. It could have saved us a lot of stressful moments.”

*The Starting Early Starting Smart Family Institute: A Journal of the Convening With Guide Points for Involving Families. Washington, DC: Casey Family Programs and the U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, 2001. The document can be downloaded from http://ncadi.samhsa.gov/ or ordered by calling toll-free 1-800-729-6686, 301-468-2600, or TDD 1-800-487-4889.

The Guide Points

Advance Planning

Guide Point 1:
The expertise of seasoned “family member mentors” can help engage new family members who are just joining the group and can introduce them to the work (e.g., policymaking, planning, implementation, evaluation) of the group and how it functions.
A family member mentor should be assigned the task of preparing and engaging other family members for organizational activities. In bringing families to the table, it is essential that families not be intimidated or invited to be at the table as the sole “family token.” There is strength and empowerment in numbers. Within various advocacy and family-run organizations, there are experienced family members who can help new family members acclimate themselves to the unfamiliar and intimidating environments where both providers and families have never before interacted as equal partners.

Guide Point 2:
Family members need a bona fide role—as opposed to that of “just a consumer”—in partnership activities.
A facilitated process is needed to support the ongoing involvement in partnership activities. Here are some considerations:

· To the extent that information can be provided in advance, family members (as well as all other group members) will be able to participate and contribute as informed and equal partners.

· There should be a realization of the time commitment required for participation in partnership activities. Care should be taken to not over-burden families with too many tasks.

· When family members are given tasks, they may also need access to the tools and resources to perform them (e.g., access to a computer or clerical assistance to accomplish the task, child care or transportation assistance, mentoring).

· In some instances, families may be invited to participate in national conferences or symposia, and they may need assistance to participate in planning conference calls, e-mail access, and help with mailings.

· Opportunities to speak on behalf of the program and families are very empowering and also provide excellent “modeling” for all families involved.

Guide Point 3:
Cultural competence is necessary in understanding how to value, support, and engage families in all aspects of any program.
The inclusion of family members of diverse racial and ethnic backgrounds, lifestyles, and beliefs requires an organizational investment in addressing differences in positive and productive ways. Here are a few relevant examples:

· It is important to (a) understand that different cultures define the concept of “family” in very different ways; and (b) to respect the family’s own definition.

· The choices in décor for the agency can consciously welcome diversity.

· There are culturally based variations in how families may nurture their children, which are legitimate for that family. In contrast to the deficit model perspective, in a culturally competent environment, these differences may be recognized as strengths.

· Beginning a daylong workshop or retreat with a demonstration of spirituality, which is drawn from the culture of one or more of the families, can prepare participants emotionally and mentally for the activities of the day, and also acknowledge a strength of that family’s culture to the entire group.

Guide Point 4:
Family members need to receive childcare, transportation, and food monies to cover the costs incurred in partnering with providers.
Childcare and transportation are expensive and important considerations in promoting family involvement. Many family members must lose time at their jobs or with their families in order to partner. Honoraria should be offered in appreciation for their time and involvement, as well as prompt payment for expenses incurred in partnering.

Early Encounters

Guide Point 5:
Family members need the opportunity to meet, greet, and relax in an informal setting before the initial meeting begins.
As in any other human interaction, it is important that family participants feel welcome and comfortable in a new setting. Giving time and attention to the welcoming aspects of the environment and meeting arrangements is both hospitable and embracing.

Guide Point 6:
Take as much time as needed to allow family members to tell their stories in an unrushed way during introductions.
For providers or meeting planners who think they only have a limited amount of time, this point can be very anxiety producing. Remember that if this is the initial visit, sufficient time should be built in for family members to tell their stories in an unrushed way. This is respectful to the individual joining the group as well as an opportunity for the provider to gain information that would otherwise be prohibited to him or her.

Guide Point 7:
By working together outside of the clinical setting, providers can demystify themselves in the eyes of family members; they will see family members as more than “consumers.”
One way to jump-start the process of working together is to set up provider-family team experiences through meetings, trainings, seminars, or retreats that are designed with the goal of relationship-building as a priority. In these partnership-building settings, serious work is combined with socializing, which lets family members and providers see each other as whole persons. Continued interaction in diverse settings helps build the family-provider relationship that ultimately affords better outcomes for both the family and the provider.

Guide Point 8:
Family members need frequent scheduled breaks to stay productively engaged in the group process.
All group participants can stay more focused if they are not distracted by hunger, thirst, or the need to find the restroom. Sometimes family members need to call home or just get away from the intensity of the discussion for a few minutes. Providers and others whose lives are “wall-to-wall” meetings may have grown less conscious of creature needs. Therefore, it is recommended that meetings have scheduled breaks at least every 1½ hours. Having an agenda with reasonably scheduled breaks—and appointing a group timekeeper to help stay on schedule—helps all group participants attend to the task at hand.

Working Together for the Long Term

Guide Point 9:
Sustained motivation to participate in organizational activities and group meetings is derived from the desire to make a contribution, as well as the desire to gain new knowledge and expertise that will be personally beneficial and valuable to other family members.
In recruiting family members, orientation to the mission and nature of the meetings is essential to engage their interest, provide a level of comfort, and to allow them to prepare themselves to make a meaningful contribution to the endeavor. Equally important is feedback to family participants so that they know their involvement is valued. Organizations should identify ways to acknowledge the contributions of family members and incorporate these practices within the norms and expectations of the organization.

Guide Point 10:
Providers who can present information in a creative and practical way—with their audience in mind—demystify information that is not easy for persons who are not trained in the same profession to understand.
Information presented in a manner that is absent of technical jargon and acronyms allows everyone in the audience to understand the message points. For example, providers are used to conversing with their peers in technical jargon and acronyms. When speaking with individuals with a need to understand, but who are not members of the same profession, providers must find practical ways to express their ideas (e.g., use of common language, analogies, stories, and visuals).

Guide Point 11:
Providers should make every effort to convey information in child-first language and to eliminate the use of acronyms and abbreviations.
Child-first language speaks to the inclusion of children with their peers and within the community. Child-first language addresses the fact that children are all so much alike, rather than highlighting the differences that separate children from each other. As an example, child-first language would read: “…a child is experiencing a serious emotional disturbance” rather than referring to a “seriously emotionally disturbed child.” As another example, we would speak of “children whose environment puts them at risk for problems with alcohol and other drugs” rather than speaking of “at-risk children,” or “children placed in foster care” instead of “foster children.”

Acronyms and abbreviations do shorten the written word, but the downside is that they can greatly impede the listener’s or reader’s comprehension of what the author is trying to communicate. Acronyms and abbreviations create a “club house” mentality. You are either in the club and thus know what these acronyms and abbreviations mean, or you are not in the club. Families feel outside the club when dealing with providers who frequently use abbreviations and acronyms. Since the goal is to form provider-family partnerships on behalf of the children, providers need to be particularly sensitive to how they speak.

There is still another important dimension to this guide point: providers of one type of service should also pay close attention to how what they say translates to members of other partner service systems. Professionals often take for granted what others may know, and thus they risk misunderstandings and poor coordination of services.

Guide Point 12:
Organizations can model a strengths-based style and philosophy that shifts the mode of thinking and operating away from the deficit model.
In order to facilitate or build an SESS program, it is necessary to move away from traditional approaches in the delivery of services for young children and move into a more family-centered model of care. Traditional approaches have been primarily based on a model of service delivery that focuses on deficits, has restrictive participation and definitions of “family,” relies heavily on technology and research while undervaluing the importance of human interaction, and is system- or provider-driven.

In contrast, family-centered care emphasizes a philosophical shift from deficits to strengths, from control to collaboration, from an expert model to a partnership model, from gatekeeping to sharing, and from dependence to empowerment. This approach supports young children’s development and well-being; supports family decisionmaking and caregiving; and promotes family participation in all aspects of evaluation, planning, and delivery of services.

Guide Point 13:
Providers who are also family members (with a child who has special needs), and who are willing to risk sharing their personal experience, can make opportunities to share aspects of their own story to show empathy for the family member’s experience and to strengthen partnership communication.
However, the provider must keep in mind that in this particular situation the different nature of his or her role as “the provider” of services may loom larger than the similarity of life experience. A family’s access to resources and services is often outside of its own control, and this differential power relationship may cause feelings of vulnerability in the family members. Establishing a good rapport is not instant or easy; it is sometimes an unexpected challenge for the family member who is also a provider. An acknowledgment of the power relationship with family members can help all providers gain personal insight into the challenges and rewards that exist in partnerships with family members, as well as the work that must be done to develop an open, trusting relationship over a period of time.

Guide Point 14:
Research process compliance and findings can be made more useful with consumer input.
Family members should be able to feel safe in the research experience and to receive some benefit from it. In terms of evaluation, family members have been invaluable in helping review and design evaluation tools that produce findings more useful to family members and providers alike.

Guide Point 15:
Family members respond well to brainstorming activities.
In meetings or work sessions, families enjoy participating and contribute significantly to brainstorming. The skill of the facilitator—in providing a context for the brainstorming exercise that resonates with all participants, in valuing all contributions, and in synthesizing the output at appropriate points—contributes to the productiveness as well as the pleasure of the task. Having more than one family member in any one session supports a family member’s comfort level. The weight of responsibility for representing “all” families is too overwhelming for one person to carry alone.

About Starting Early Starting Smart

· Create and test a new model for providing integrated behavioral health services (mental health and substance abuse prevention and treatment) for young children (birth to 7 years) and their families; and to

· Inform practitioners and policymakers of successful interventions and promising practices from the multi-year study, which lay a critical foundation for the positive growth and development of very young children.

The SESS approach informs policymaking for:

· Service system redesign
· Strengthening the home environment
· Using culture as a resource in planning services with families
· Service access and utilization strategies
· Targeting benefits for children
· Working with families from a strengths-based perspective

In October 1997, with initial funding of $30 million, the Substance Abuse and Mental Health Services Administration (SAMHSA) and Casey Family Programs embarked on a precedent-setting public/private collaboration. Twelve culturally diverse grantee organizations were selected. Each provides integrated behavioral health services in community-based early childhood settings—such as Child Care, Head Start and Primary Care Clinics—where young families customarily receive services for children. Critical to this project is the required collaboration among funders, grantees, consumers, and local site service providers. Implicit in the design of this project is sustainability planning for secured longevity of the programs.

The Study Design

The 12 grantees, working collaboratively, designed a study whereby integrated behavioral health services are delivered in typical early childhood settings. Each site has an intervention and comparison group, and each site delivers similar targeted, culturally-relevant, interventions for young children and their families. A collaboratively determined set of outcomes has been established to evaluate project effectiveness:

· Access to and use of services
· Social, emotional, and cognitive outcomes for children
· Caregiver-child interaction outcomes
· Family functioning

The goal of the SESS research is to provide rigorous scientific evidence concerning whether children and families participating in SESS programs achieve better access to needed services and better social, emotional, cognitive, and behavioral health outcomes than do the children and families not receiving these services. SESS programs may also generate information about opportunities, practices, and barriers to sought-after outcomes. This information is critical to achieving effective public policies.

SESS Extended
It was clear from the early days of SESS that whatever effects were uncovered, longitudinal extension of the study would be valuable. In 2001, SAMHSA and Casey Family Programs embarked upon an extension phase, which will increase understanding of the impact of early intervention as young children enter preschool and school years, when babies or toddlers are asked to meet escalating emotional and cognitive demands. This longitudinal extension can validate early methods and findings and assess their durability. It is anticipated that this work will include additional data points of a refined instrument set and intervention package with the addition of study questions related to cost and value, and other special studies. Additional future plans include applying and validating early SESS lessons learned, key concepts, components, and principles to new settings that serve families with young children.

Summation
In sum, SESS reflects the growing acknowledgement that it is important to target positive interventions to very young children. The infant and preschool years lay a critical foundation for later growth and development. Second, successful interventions for very young children must meet the multiple behavioral health, physical health, and educational needs of families. Third, integrated behavioral health services must be made more accessible to families with multiple needs, which are difficult to meet in a fragmented service system.

The SESS Sites
Miami’s Families: Starting Early Starting Smart (Florida)
Raising Infants in Secure Environments (Massachusetts)
Healthy Foundations for Families (Missouri)
Starting Early to Link Enhanced Comprehensive Treatment Teams (New Mexico)
Casey Family Partners (Washington)
National Association for Families and Addiction Research and Education (Illinois)*
Child Development, Inc. (Arkansas)
Asian American Recovery Services, Inc. (California)
Locally Integrated Services in Head Start (Washington, D.C.)
Starting Early Starting Smart Head Start Collaboration Project (Illinois)
Baltimore BETTER Family and Community Partnership (Maryland)
New Wish (Nevada)
Beda?chelh Tulalip Tribes Early Intervention in Tribal and Mainstream Communities (Washington)
Evaluation, Management and Training, Inc.** (California)

*One of the original SESS sites was unable to continue with the study, but it was an important contributor to the original design and implementation of this project. Our thanks to Dr. Linda Randolph and Dr. Ira Chasnoff.

**Data Coordinating Center

For more information about Starting Early Starting Smart
and related SAMHSA-Casey products, contact
http://www.casey.org/ or http://www.csap.gov/ or http://ncadi.samhsa.gov/.