This document was produced through the full NWI consensus process.
The Principles of Wraparound: Chapter 2.1
Ten Principles of the Wraparound Process Eric Bruns, Co-Director, National Wraparound Initiative, and Associate Professor, University of Washington School of Medicine Janet Walker, Co-Director, National Wraparound Initiative, and Research Associate Professor, Portland State University School of Social Work National Wraparound Initiative Advisory Group
T
he philosophical principles of wraparound have long provided the basis for understanding this widely-practiced service delivery model. This value base for working in collaboration and partnership with families has its roots in early programs such as Kaleidoscope in Chicago, the Alaska Youth Initiative, Project Wraparound in Vermont, and other trailblazing efforts. Perhaps the best presentation of the wraparound value base is provided through the stories contained in Everything is Normal until Proven Otherwise (Dennis & Lourie, 2006). In this volume, published by the Child Welfare League of America, Karl Dennis, former Director of Kaleidoscope, presents a set of stories that illuminate in rich detail how important it is for helpers to live by these core principles in service delivery. As described in the Resource Guide’s Foreword, these stories let the reader “experience the wraparound process as it was meant to be” (p.xi). For many years, the philosophy of wraparound was expressed through the work of local initiatives and agencies such as Kaleidoscope, but not formally captured in publications for the field. Critical first descriptions were provided by VanDenBerg & Grealish (1996) as part of a special issue on wraparound, and by Goldman (1999) as part of an influential monograph on wraparound (Burns & Goldman, 1999). These resources presented elements and practice principles that spanned activity at the team, organization, and
This is an updated version of The Ten Principles of the Wraparound Process, which was originally published in 2004.
The Resource Guide to Wraparound
Section 2: The Principles of Wraparound
system levels. In other words, some elements were intended to guide work at the team level with the youth, family and hands-on support people, while other elements described activities at the program or system level. For many, these documents were the best means available for understanding the wraparound process. They also provided the basis for initial efforts at measuring wraparound implementation. (See the chapter on wraparound fidelity in chapter 5e.1 of this Resource Guide.)
The Ten Principles as Presented by the National Wraparound Initiative At the outset of the National Wraparound Initiative’s work, it was recognized that presentation of the principles of wraparound would be a central part of the NWI’s mission to enhance understanding of wraparound and support high-quality wraparound practice. So what, if anything, was needed to communicate the principles clearly? In the first place, the early descriptions of wraparound’s philosophical base included a series of elements that were described only briefly, or not at all. If these values were truly to guide practice, it seemed important to provide some information about what was meant by key terms and phrases like “culturally competent,” “based in the community” and “individualized.” Secondly, since the principles were intended to serve as a touchstone for wraparound practice and the foundation for the NWI’s subsequent work, it was important that a document describing the principles receive formal acceptance by the advisors who comprised the NWI. Finally, for clarity, it seemed optimal to express the principles at the level of the family and team. Once the principles were clarified and written in this way, descriptions of the organizational and system supports necessary to achieve high-quality wraparound practice (see Chapter 5a.1 of this Resource Guide) could be presented as “what supports are needed to achieve the wraparound principles for families and their teams?” Furthermore, descriptions of the practice model for wraparound (See chapter 4a.1 of this Resource Guide) could be presented as “what activities must be undertaken by wraparound teams to achieve the principles for youth and families?” The current document began with the efforts
of a small team of wraparound innovators, family advocates, and researchers working together over several months. This team started with the original elements and practice principles, reviewed other documents and training manuals, and drafted a revised version of the principles as expressed at a family and team level. These descriptions were then provided to a much larger national group of family members, program administrators, trainers, and researchers familiar with wraparound. Through several stages of work, these individuals voted on the principles presented, provided feedback on wording, and participated in a consensusbuilding process. Though not complete, consensus on the NWI principles document, initially created in 2004, was strong. Nonetheless, there were several key areas where the complexity of wraparound made consensus difficult within our advisory group. In many cases, advisors were uncomfortable with brief definitions of the principles because they did not acknowledge tensions that could arise in “real world” efforts to put the principles into practice. These tensions were acknowledged and addressed in the consensus document in several ways: •
First, in addition to the one- to two-sentence definition for each principle, more in-depth commentary is also provided, highlighting tensions and disagreements and providing much greater depth about the meaning of each principle.
•
Second, we have allowed our NWI “community of practice” to revisit the principles. Most notably, at the behest of a number of advisors, the NWI revisited the principle of Persistent, and asked whether the original name for the principle, Unconditional Care, might be more appropriate and a new definition possible. The results of this 2008 survey of advisors are reflected in the definitions presented here, and a description of this process is presented for your information in Chapter 2.5 of this Resource Guide.
•
Finally, true to the wraparound model, all the materials of the NWI are intended to be resources for use by local initiatives, families, and researchers to use as
Chapter 2.1: Bruns, et al.
they see fit. Thus, documents such as this one, as well as the Phases and Activities of the Wraparound Process, are conceived as “skeletons” to be “fleshed out” by individual users. For example, in Canada, a new nationwide initiative north of the border has adapted the NWI principles. As a result, they have used the NWI principles to describe the value base in ways to suit their purposes, such as a description of the paradigm shifts necessary for wraparound and the personal values expected of participating helpers. Many have expressed a need to move beyond a value base for wraparound in order to facilitate program development and replicate positive outcomes. However, wraparound’s philosophical principles will always remain the starting point for understanding wraparound. The current document attempts to provide this starting point for high-quality practice for youth and families. Considered along with the rest of the materials in the Resource Guide to Wraparound, we hope that this document helps achieve the main goal expressed by members of the NWI at its outset: To provide clarity on what it means to do wraparound, for the sake of communities, programs, and families. Just as important, we hope that NWI documents such as this continue to be viewed as works in progress, updated and augmented as needed based on research and experience.
The Ten Principles of the Wraparound Process 1. Family voice and choice. Family
and youth/child perspectives are intentionally elicited and prioritized during all phases of the wraparound process. Planning is grounded in family members’ perspectives, and the team strives to provide options and choices such that the plan reflects family values and preferences. The wraparound process recognizes the importance of long-term connections between people, particularly the bonds between family members. The principle of family voice and choice in wrap-
around stems from this recognition and acknowledges that the people who have a long-term, ongoing relationship with a child or youth have a unique stake in and commitment to the wraparound process and its outcomes. This principle further recognizes that a young person who is receiving wraparound also has a unique stake in the process and its outcomes. The principle of family voice and choice affirms that these are the people who should have the greatest influence over the wraparound process as it unfolds. This principle also recognizes that the likelihood of successful outcomes and youth/child and family ownership of the wraparound plan are increased when the wraparound process reflects family members’ priorities and perspectives. The principle thus explicitly calls for family voice—the provision of opportunities for family members to fully explore and express their perspectives during wraparound activities—and family choice—the structuring of decision making such that family members can select, from among various options, the one(s) that are most consistent with their own perceptions of how things are, how things should be, and what needs to happen to help the family achieve its vision of well-being. Wraparound is a collaborative process (principle 3); however within that collaboration, family members’ perspectives must be the most influential. The principle of voice and choice explicitly recognizes that the perspectives of family members are not likely to have sufficient impact during wraparound unless intentional activity occurs to ensure their voice and choice drives the process. Families of children with emotional and behavioral disorders are often stigmatized and blamed for their children’s difficulties. This and other factors—including possible differences in social and educational status between family members and professionals, and the idea of professionals as experts whose role is to “fix” the family—can lead teams to discount, rather than prioritize, family members’ perspectives during group discussions and decision making. These same factors also decrease the probability that youth perspectives will have impact in groups when adults and professionals are present. Furthermore, prior experiences of stigma and shame can leave family members reluctant to express their perspectives at all. Putting the prin-
Section 2: The Principles of Wraparound
ciple of youth and family voice and choice into action thus requires intentional activity that supports family members as they explore their perspectives and as they express their perspectives during the various activities of wraparound. Further intentional activity must take place to ensure that this perspective has sufficient impact within the collaborative process, so that it exerts primary influence during decision making. Team procedures, interactions, and products—including the wraparound plan— should provide evidence that the team is indeed engaging in intentional activity to prioritize the famThe wraparound ily perspectives. the princiteam should ple While speaks of family be composed voice and choice, the of people who wraparound process recognizes that the have a strong families who particicommitment to pate in wraparound, the family’s well- like American families generally, come being. in many forms. In many families, it is the biological parents who are the primary caregivers and who have the deepest and most enduring commitment to a youth or child. In other families, this role is filled by adoptive parents, step-parents, extended family members, or even non-family caregivers. In many cases, there will not be a single, unified “family” perspective expressed during the various activities of the wraparound process. Disagreements can occur between adult family members/ caregivers or between parents/caregivers and extended family. What is more, as a young person matures and becomes more independent, it becomes necessary to balance the collaboration in ways that allow the youth to have growing influence within the wraparound process. Wraparound is intended to be inclusive and to manage disagreement by facilitating collaboration and creativity; however, throughout the process, the goal is always to prioritize the influence of the
people who have the deepest and most persistent connection to the young person and commitment to his or her well-being. Special attention to the balancing of influence and perspectives within wraparound is also necessary when legal considerations restrict the extent to which family members are free to make choices. This is the case, for example, when a youth is on probation, or when a child is in protective custody. In these instances, an adult acting for the agency may take on caregiving and/or decision making responsibilities vis-à-vis the child, and may exercise considerable influence within wraparound. In conducting our review of opinions of wraparound experts about the principles, this has been one of several points of contention: How best to balance the priorities of youth and family against those of these individuals. Regardless, there is strong consensus in the field that the principle of family voice and choice is a constant reminder that the wraparound process must place special emphasis on the perspectives of the people who will still be connected to the young person after agency involvement has ended.
2. Team based. The wraparound team
consists of individuals agreed upon by the family and committed to the family through informal, formal, and community support and service relationships. Wraparound is a collaborative process (see principle 3), undertaken by a team. The wraparound team should be composed of people who have a strong commitment to the family’s well-being. In accordance with principle 1, choices about who is invited to join the team should be driven by family members’ perspectives. At times, family members’ choices about team membership may be shaped or limited by practical or legal considerations. For example, one or more family members may be reluctant to invite a particular person— e.g., a teacher, a therapist, a probation officer, or a non-custodial ex-spouse— to join the team. At the same time, not inviting that person may mean that the team will not have access to resources and/or interpersonal support that would otherwise be available. Not inviting a particular person to join the team can also mean that the activities or support that he or she offers
Chapter 2.1: Bruns, et al.
will not be coordinated with the team’s efforts. It can also mean that the family loses the opportunity to have the team influence that person so that he or she becomes better able to act supportively. If that person is a professional, the team may also lose the opportunity to access services or funds that are available through that person’s organization or agency. Not inviting a particular professional to join the team may also bring undesired consequences, for example, if participation of the probation officer on the wraparound team is required as a
condition of probation. Family members should be provided with support for making informed decisions about whom they invite to join the team, as well as support for dealing with any conflicts or negative emotions that may arise from working with such team members. Or, when relevant and possible, the family should be supported to explore options such as inviting a different representative from an agency or organization. Ultimately, the family may also choose not to participate in wraparound. When a state agency has legal custody of a child or youth, the caregiver in the permanency setting and/or another person designated by that agency may have a great deal of influence over who should be on the team; however, in accordance with principle 1, efforts should be made to include participation of family members and others who have a long-term commitment to the young person and who will remain connected to him or her after formal agency involvement has ended.
3. Natural supports. The team actively
seeks out and encourages the full participation of team members drawn from family members’ networks of interpersonal and community relationships. The wraparound plan reflects activities and interventions that draw on sources of natural support. This principle recognizes the central importance of the support that a youth/child, parents/caregivers, and other family members receive “naturally,” i.e., from the individuals and organizations whose connection to the family is independent of the formal service system and its resources. These sources of natural support are sustainable and thus most likely to be available for the youth/child and family after wraparound and other formal services have ended. People who represent sources of natural support often have a high degree of importance and influence within family members’ lives. These relationships bring value to the wraparound process by broadening the diversity of support, knowledge, skills, perspectives, and strategies available to the team. Such individuals and organizations also may be able to provide certain types of support that more formal or professional providers find hard to provide. The primary source of natural support is the family’s network of interpersonal relationships, which includes friends, extended family, neighbors, co-workers, church members, and so on. Natural support is also available to the family through community institutions, organizations, and associations such as churches, clubs, libraries, or sports leagues. Professionals and paraprofessionals who interact with the family primarily offer paid support; however, they can also be connected to family members through caring relationships that exceed the boundaries and expectations of their formal roles. When they act in this way, professionals and paraprofessionals too can become sources of natural support. Practical experience with wraparound has shown that formal service providers often have great difficulty accessing or engaging potential team members from the family’s community and informal support networks. Thus, there is a tendency that these important relationships will be underrepresented on wraparound teams. This
Section 2: The Principles of Wraparound
principle emphasizes the need for the team to act intentionally to encourage the full participation of team members representing sources of natural support.
4. Collaboration. Team members work cooperatively and share responsibility for developing, implementing, monitoring, and evaluating a single wraparound plan. The plan reflects a blending of team members’ perspectives, mandates, and resources. The plan guides and coordinates each team member’s work towards meeting the team’s goals.
Wraparound is a collaborative activity—team members must reach collective agreement on numerous decisions throughout the wraparound process. For example, the team must reach decisions about what goals to pursue, what sorts of strategies to use to reach the goals, and how to evaluate whether or not progress is actually being made in reaching the goals. The principle of collaboration recognizes that the team is more likely to accomplish its work when team members approach decisions in an open-minded manner, prepared to listen to and be influenced by other team
members’ ideas and opinions. Team members must also be willing to provide their own perspectives, and the whole team will need to work to ensure that each member has opportunities to provide input and feels safe in doing so. As they work to reach agreement, team members will need to remain focused on the team’s overarching goals and how best to achieve these goals in a manner that reflects all of the principles of wraparound. The principle of collaboration emphasizes that each team member must be committed to the team, the team’s goals, and the wraparound plan. For professional team members, this means that the work they do with family members is governed by the goals in the plan and the decisions reached by the team. Similarly, the use of resources available to the team—including those controlled by individual professionals on the team—should be governed by team decisions and team goals. This principle recognizes that there are certain constraints that operate on team decision making, and that collaboration must operate within these boundaries. In particular, legal mandates or other requirements often constrain decisions. Team members must be willing to work creatively and flexibly to find ways to satisfy these mandates and requirements while also working towards team goals. Finally, it should be noted that, as for principles 1 (family voice and choice) and 2 (team-based), defining wraparound’s principle of collaboration raises legitimate concern about how best to strike a balance between wraparound being youth- and family-driven as well as team-driven. This issue is difficult to resolve completely, because it is clear that wraparound’s strengths as a planning and implementation process derive from being teambased and collaborative while also prioritizing the perspectives of family members and natural supports who will provide support to the youth and family over the long run. Such tension can only be resolved on an individual family and team basis, and is best accomplished when team members, providers, and community members are well supported to fully implement wraparound in keeping with all its principles.
5. Community based. The wraparound
team implements service and support strategies that take place in the most in-
Chapter 2.1: Bruns, et al.
clusive, most responsive, most accessible, and least restrictive settings possible; and that safely promote child and family integration into home and community life. This principle recognizes that families and young people who receive wraparound, like all people, should have the opportunity to participate fully in family and community life. This implies that the team will strive to implement service and support strategies that are accessible to the family and that are located within the community where the family chooses to live. Teams will also work to ensure that family members receiving wraparound have greatest possible access to the range of activities and environments that are available to other families, children, and youth within their communities, and that support positive functioning and development.
6. Culturally competent. The wrap-
around process demonstrates respect for and builds on the values, preferences, beliefs, culture, and identity of the child/ youth and family, and their community. The perspectives people express in wraparound—as well as the manner in which they express their perspectives—are importantly shaped by their culture and identity. In order to collaborate successfully, team members must be able to interact in ways that demonstrate respect for diversity in expression, opinion, and preference, even as they work to come together to reach decisions. This principle emphasizes that respect toward the family in this regard is particularly crucial, so that the principle of family voice and choice can be realized in the wraparound process. This principle also recognizes that a family’s traditions, values, and heritage are sources of great strength. Family relationships with people and organizations with whom they share a cultural identity can be essential sources of support and resources; what is more, these connections are often “natural” in that they are likely to endure as sources of strength and support after formal services have ended. Such individuals and organizations also may be better able to provide types of support difficult to provide through more formal
or professional relationships. Thus, this principle also emphasizes the importance of embracing these individuals and orgaUndesired nizations, and nurturbehavior, events, ing and strengthening or outcomes these connections and resources so as to are not seen as help the team achieve evidence of child its goals, and help the or family “failure” family sustain positive momentum after and are not seen formal wraparound as a reason to has ended. eject the family This principle further implies that the from wraparound. team will strive to ensure that the service and support strategies that are included in the wraparound plan also build on and demonstrate respect for family members’ beliefs, values, culture, and identity. The principle requires that team members are vigilant about ensuring that culturally competent services and supports extend beyond wraparound team meetings.
7. Individualized. To achieve the goals laid out in the wraparound plan, the team develops and implements a customized set of strategies, supports, and services.
This principle emphasizes that, when wraparound is undertaken in a manner consistent with all of the principles, the resulting plan will be uniquely tailored to fit the family. The principle of family voice and choice lays the foundation for individualization. That principle requires that wraparound must be based in the family’s perspective about how things are for them, how things should be, and what needs to happen to achieve the latter. Practical experience with wraparound has shown that when families are able to fully express their perspectives, it quickly becomes clear that only a portion of the help and support required is available through existing formal ser-
Section 2: The Principles of Wraparound
vices. Wraparound teams are thus challenged to create strategies for providing help and support that can be delivered outside the boundaries of the traditional service environment. Moreover, the wraparound plan must be designed to build on the particular strengths of family members, and on the assets and resources of their community and culture. Individualization necessarily results as team members collaboratively craft a plan that capitalizes on their collective strengths, creativity, and knowledge of possible strategies and available resources.
8. Strengths based. The wraparound
process and the wraparound plan identify, build on, and enhance the capabilities, knowledge, skills, and assets of the child and family, their community, and other team members. The wraparound process is strengths based in that the team takes time to recognize and validate the skills, knowledge, insight, and strategies that each team member has used to meet the challenges they have encountered in life. The wraparound plan is constructed in such a way that the strategies included in the plan capitalize on and enhance the strengths of the people who participate in carrying out the plan. This principle also implies that interactions between team members will demonstrate mutual respect and appreciation for the value each person brings to the team. The commitment to a strengths orientation is particularly pronounced with regard to the child or youth and family. Wraparound is intended to achieve outcomes not through a focus on eliminating family members’ deficits but rather through efforts to utilize and increase their assets. Wraparound thus seeks to validate, build on, and expand family members’ psychological assets (such as positive self-regard, self-efficacy, hope, optimism, and clarity of values, purpose, and identity), their interpersonal assets (such as social competence and social connectedness), and their expertise, skill, and knowledge.
9. Unconditional. A wraparound team
does not give up on, blame, or reject children, youth, and their families. When faced with challenges or setbacks, the
team continues working towards meeting the needs of the youth and family and towards achieving the goals in the wraparound plan until the team reaches agreement that a formal wraparound process is no longer necessary. This principle emphasizes that the team’s commitment to achieving its goals persists regardless of the child’s behavior or placement setting, the family’s circumstances, or the availability of services in the community. This principle includes the idea that undesired behavior, events, or outcomes are not seen as evidence of youth or family “failure” and are not seen as a reason to reject or eject the family from wraparound. Instead, adverse events or outcomes are interpreted as indicating a need to revise the wraparound plan so that it more successfully promotes the positive outcomes associated with the goals. This principle also includes the idea that the team is committed to providing the supports and services that are necessary for success, and will not terminate wraparound because available services are deemed insufficient. Instead, the team is committed to creating and implementing a plan that reflects the wraparound principles, even in the face of limited system capacity. At the same time, it is worth noting that many wraparound experts, including family members and advocates, have observed that providing “unconditional” care to youth and families can be challenging for teams to achieve in the face of certain system-level constraints. One such constraint is when funding limitations or rules will not fund the type or mix of services determined most appropriate by the team. In these instances the team must develop a plan that can be implemented in the absence of such resources without giving up on the youth or family. Providing unconditional care can be complicated in other situations, such as the context of child welfare, where unconditional care includes the duty to keep children and youth safe. Regardless, team members as well as those overseeing wraparound initiatives must strive to achieve the principle of unconditional care for the youth and all family members if the wraparound process is to have its full impact on youth, families, and communities.
Chapter 2.1: Bruns, et al.
10. Outcome based. The team ties the
goals and strategies of the wraparound plan to observable or measurable indicators of success, monitors progress in terms of these indicators, and revises the plan accordingly. This principle emphasizes that the wraparound team is accountable—to the family and to all team members; to the individuals, organizations and agencies that participate in wraparound; and, ultimately, to the public—for achieving the goals laid out in the plan. Determining outcomes and tracking progress toward outcomes should be an active part of wraparound team functioning. Outcomes monitoring allows the team to regularly assess the effectiveness of plan as a whole, as well as the strategies included within the plan, and to determine when the plan needs revision. Tracking progress also helps the team maintain hope, cohesiveness, and efficacy. Tracking progress and outcomes also helps the family know that things are changing. Finally, team-level outcome monitoring aids the program and community to demonstrate success as part of their overall evaluation plan, which may be important to gaining support and resources for wraparound teams throughout the community.
References Burns, B. J., & Goldman, S. K. (Eds.). (1999). Systems of care: Promising practices in children’s mental health, 1998 series: Volume IV. Promising practices in wraparound for children with severe emotional disorders and their families. Washington, DC: Center for Effective Collaboration and Practice, American Institutes for Research. Dennis, K.W. & Lourie, I.S. (2006). Everything is normal until proven otherwise: A book about wraparound services. Washington, DC: Child Welfare League of America. Goldman, S.K. (1999). The conceptual framework for wraparound. In Burns, B. J. & Goldman, K. (Eds.), Systems of care: Promising practices in children’s mental health, 1998 series, Vol. IV: Promising practices in wraparound for children with severe emotional disorders
and their families. Washington DC: Center for Effective Collaboration and Practice. VanDenBerg, J.E. & Grealish, E.M. (1996). Individualized services and supports through the wraparound process: Philosophy and procedures. Journal of Child and Family Studies, 5, 7-22.
Acknowledgments We would like to thank the following Advisory Group members for contributing materials to the “Ten Principles of the Wraparound Process” document, and for participating in interviews and the Delphi process through which feedback was received on initial drafts:
A. Michael Booth Beth Larson-Steckler Bill Reay Carl Schick Carol Schneider Christina Breault Christine S. Davis Collette Lueck Constance Burgess Constance Conklin David Osher Dawn Hensley Don Koenig Eleanor D. Castillo Frank Rider Gayle Wiler Holly Echo-Hawk Solie Jane Adams Jane Kallal Jennifer Crawford Jennifer Taub Jim Rast John Burchard John Franz John VanDenBerg Josie Bejarano
Julie Radlauer Kelly Pipkins Knute Rotto Kristen Leverentz-Brady Lucille Eber Lyn Farr Marcia Hille Marcus Small Mareasa Isaacs Maria Elena Villar Marlene Matarese Mary Grealish Mary Jo Meyers Mary Stone Smith Michael Epstein Michael Taylor Neil Brown Norma Holt Pat Miles Patti Derr Robin El-Amin Rosalyn Bertram Ruth A. Gammon Ruth Almen Theresa Rea Trina W. Osher
Julie Becker
Vera Pina
Section 2: The Principles of Wraparound
Authors Eric Bruns is a clinical psychologist and Associate Professor at the University of Washington School of Medicine in Seattle. He spends much of his professional life conducting research on innovative community-based models for helping youth and families with complex needs, including family treatment drug courts, treatment foster care, parent support programs, and the wraparound process. He is a lead developer of the Wraparound Fidelity Assessment System and, with Janet Walker, co-directs the National Wraparound Initiative. Janet Walker is Research Associate Professor in the School of Social Work at Portland State University and co-Director of the Research and Training Center on Pathways to Positive Futures. Her current research focuses on 1) exploring how individuals and organizations acquire capacity to implement and sustain high quality practice in human service settings, 2) describing key implementation factors
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that affect the ability of organizations and individuals to provide high quality services and treatment, and 3) developing and evaluating interventions to increase the extent to which youth with emotional or mental health difficulties are meaningfully involved in care and treatment planning. Together with Dr. Eric Bruns, Dr. Walker co-directs the National Wraparound Initiative.
Suggested Citation: Bruns, E. J., Walker, J. S., & The National Wraparound Initiative Advisory Group. (2008). Ten principles of the wraparound process. In E. J. Bruns & J. S.Walker (Eds.), The resource guide to wraparound. Portland, OR: National Wraparound Initiative, Research and Training Center for Family Support and Children’s Mental Health.
What is Wraparound • • • • • •
Wrap around is a process that follows a series of steps A team approach to supporting and serving children with mental health and behaviors problems in their families A plan that provides services and supports that are “wrapped around” the child and family The family is always at the center of the planning process. That means the family has as much say about the plan as the agencies involved in the child’s plan. The family builds the team. That means the family can choose the people they want to be on their child and family team. The focus is on the strengths of the child and family. That means the child and family’s plan will be one-of-a-kind with the specific services and supports for the child and family need.
Steps in the Wraparound Process • • • • •
• •
•
•
Family is assigned to a Care Management Entity (CME). Family is connected with a Family Support Partner. The Care coordinator and the Family Support Partner work with the family as a team. The Care Coordinator will work with the family and develop a crisis plan so that that the family will know what to do in the event of a crisis. Over the next several weeks the Care Coordinator and Family Support Partner will help a family o Understand the wraparound process o Choose the members of the child and family team o Consider the strengths needs and culture of the family o Develop short and long term goals for the family and child o Find answers for the most pressing needs At the first Child and Family Team meeting the family and team will develop a Plan of Care that is unique to the family. Each member of the team is responsible for implementing the plan. The team will meet at certain time to review the plan, make sure it is working well and make changes if needed. The meetings are held at a time and location best for a family and the family may ask for a Child and Family team meeting at any time. The length of time the child and family participates in wraparound depends how the child was referred to wraparound. The usual length of time is 9-24 months. During that time, the child and family team will be working to transition out of formal wraparound making sure that you have all the natural supports the family and child need. Natural supports are individuals or organizations in the community, family, social or faith communities such as friends, extended family, ministers, neighbors.
Responsibilities of a Care Coordinator • • • • • • •
Help identify family strengths and needs and supports Make sure family voice is heard Arrange and prepare meetings Create a plan of care based upon strengths and needs Coordinate services in the plan Monitor the plan of care Develop a family’s crisis plan
Responsibilities of a Family Support Partner • • • • • • •
Provide emotional support to a family Indentify people with the help of the family that they want on the Child and Family Team Support efforts to get family needs met Work with families and organize and prepare for meetings so the family voice is heard Go with family to meetings such as at school or court Connect families with information and resources Offer support groups, educational programs and other family activities
Who is on the Child and family Team? • • • •
Family Members Child (when possible) Care Coordinator Agency staff required to be on the team Other members may be • Other family members o Friends, neighbors, members of religious community o Child’s friends o Service providers, mentors, tutors and therapists
Family Responsibilities • • • •
Choose team members’ participate in child and family team meetings. Discuss strengths of the child and family in team meetings. Ask questions Participate in developing crisis plan and plan of care Let team know if something is not working and needs to change When ready, lead the child and family team meetings
Joint CMCS and SAMHSA Informational Bulletin DATE:
May 7, 2013
FROM:
Cindy Mann, Director Center for Medicaid and CHIP Services Pamela S. Hyde, J.D., Administrator Substance Abuse and Mental Health Services Administration
SUBJECT: Coverage of Behavioral Health Services for Children, Youth, and Young Adults with Significant Mental Health Conditions This Informational Bulletin is intended to assist states to design a benefit that will meet the needs of children, youth, and young adults with significant mental health conditions. Children with significant emotional, behavioral and mental health needs can successfully live in their own homes and community with the support of the mental health services described in this document. These services enable children with complex mental health needs – many of whom have traditionally been served in restrictive settings like residential treatment centers, group homes and psychiatric hospitals – to live in community settings and participate fully in family and community life. The information in this Bulletin is based on evidence from major U.S. Department of Health and Human Services (HHS) initiatives that show that these services are not only clinically effective but cost effective as well. The Bulletin also identifies resources that are available to states to facilitate their work in designing and implementing a benefit package for this vulnerable population. Developing these services will help states comply with their obligations under the Americans with Disabilities Act (ADA) and to Medicaid’s Early Periodic Screening, Diagnostic and Treatment (EPSDT) requirements, specifically with respect to mental health and substance use disorder services 1. Many of these resources are from states, and we look forward to continuing to work with states and stakeholders to add to this resource list and to provide further assistance in assuring that children receive the care they need. Please contact John O’Brien at John.O'Brien3@cms.hhs.gov for questions about this Bulletin or to suggest additional resources. Background Over the past 2 decades, 2 major federal initiatives have addressed the needs of children and youth with significant mental health conditions: Substance Abuse and Mental Health Services Administration’s (SAMHSA) Children’s Mental Health Initiative (CMHI) and the Centers for 1
http://www.ada.gov/olmstead/q&a_olmstead.pdf.
Informational Bulletin – Page 2 Medicare & Medicaid Services (CMS) Psychiatric Residential Treatment Facility (PRTF) Demonstration Program. The CMHI program promotes a coordinated, community-based approach to care for children and adolescents with serious mental health challenges and their families. The PRTF Demonstration Program was designed to determine the effectiveness of community-based services for youth who are in, or at risk of entering, a PRTF. Both of these programs target similar children and youth who have significant mental health conditions and in some instances needing inpatient psychiatric or residential treatment. Results from these programs have consistently found that the implementation of home and community-based services for this population have made significant improvement in the quality of life for these children, youth, and family. These have also shown a positive impact on Medicaid programs that have designed benefits for this population. •
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Reduced costs of care – The PRTF evaluation showed that state Medicaid agencies reduced the overall cost of care. For example, home and community-based services provided to children and youth in the PRTF demonstration cost 25 percent of what it would have cost to serve the children and youth in a PRTF, an average savings of $40,000 per year per child. State Medicaid agencies’ annual costs per child were reduced significantly within the first 6 months of the program. Improved school attendance and performance - After 12 months of service, 44percent of children and youth improved their school attendance and 41 percent improved their grades as compared to their attendance and grades prior to participating in the program. Increase in behavioral and emotional strengths - 33 percent of youth significantly improved their behavioral strengths after 12 months of service and 40 percent after 24 months compared to their strengths as measured prior to participating in the program. Behavioral and emotional strengths include the ability to form interpersonal relationships, positive connection with family members, positive functioning at school, ability to demonstrate self-confidence. Improved clinical and functional outcomes - According to caregiver reports, 40 percent of children served in the CMHI program showed a decrease in clinical symptoms from when they entered the program. More stable living situations - The percentage of children and youth in CMHI who remained in a single living situation rather than multiple living situations during the previous 6 months increased from 70 percent at intake to 81 percent at 24 months. Improved attendance at work for Caregivers - Caregivers who were employed at intake reported missing an average of 6.2 days of work in the 6 months prior to participation in the program due to their child’s behavioral or emotional problems. This decreased to 4.0 days at 12 months of program participation, and to 2.8 days at 24 months of program participation. Reduced suicide attempts - Within 6 months of service in CMHI, the number of youth reporting thoughts of suicide decreased from intake into the program by 51 percent and the number of youth reporting a suicide attempt decreased by 64 percent. Decreased contacts with law enforcement - For youth involved in the juvenile justice system, arrests decreased by nearly 50 percent from intake into the program after 12 months of service in CMHI.
Informational Bulletin – Page 3 Specific information regarding SAMHSA’s CMHI program can be found at http://store.samhsa.gov/shin/content//PEP12-CMHI2010CD/PEP12-CMHI2010CD.pdf. More information about the PRTF Demonstration including National Evaluation reports can be found at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/DeliverySystems/Institutional-Care/Alternatives-to-Psychiatric-Residential-Treatment-FacilitiesDemonstration-PRTF.html. Benefit Design The CMHI and PRTF Demonstration programs offered an array of services to meet the multiple and changing needs of children and youth with behavioral health challenges and the needs of their families. While the core benefit package for children and youth with significant mental health conditions offered by these two programs included traditional services, such as individual therapy, family therapy, and medication management, the experience of the CMHI and the PRTF demonstration showed that including a number of other home and community-based services significantly enhanced the positive outcomes for children and youth. These services include intensive care coordination (often called wraparound service planning/facilitation), family and youth peer support services, intensive in-home services, respite care, mobile crisis response and stabilization, and flex funds. Each of these services is described below. Intensive Care Coordination: Wraparound Approach Intensive care coordination includes assessment and service planning, accessing and arranging for services, coordinating multiple services, including access to crisis services. Assisting the child and family to meet basic needs, advocating for the child and family, and monitoring progress are also included. The wraparound approach is a form of intensive care coordination for children with significant mental health conditions. It is a team-based, collaborative process for developing and implementing individualized care plans for children and youth with complex needs and their families. This approach focuses on all life domains and includes clinical interventions and formal and informal supports. The wraparound “facilitator” is the intensive care coordinator who organizes, convenes, and coordinates this process. The wraparound approach is done by a child and family team for each youth that includes the child, family members, involved providers, and key members of the child’s formal and informal support network, including members from the child serving agencies. The child and family team develops, implements, and monitors the service plan. Information about wraparound can be found on the website of the National Wraparound Initiative at http://www.nwi.pdx.edu/wraparoundbasics.shtml. State specific information regarding Intensive Care Coordination/Wraparound Service Planning/Facilitation can be found at: • •
https://myshare.in.gov/FSSA/dmha/caprtf/Providers/Service%20Definitions/Service_Defi nitions_YR_2_2008-09_50809.pdf (Indiana) http://www.mass.gov/eohhs/gov/commissions-and-initiatives/cbhi/home-and-communitybased-behavioral-health-srvcs.html (Massachusetts)
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http://county.milwaukee.gov/WraparoundMilwaukee.htm (Wisconsin)
Peer Services: Parent and Youth Support Services Parent and youth support services include developing and linking with formal and informal supports; instilling confidence; assisting in the development of goals; serving as an advocate, mentor, or facilitator for resolution of issues; and teaching skills necessary to improve coping abilities. The providers of peer support services are family members or youth with “lived experience” who have personally faced the challenges of coping with serious mental health conditions, either as a consumer or a caregiver. These peers provide support, education, skills training, and advocacy in ways that are both accessible and acceptable to families and youth. Almost all of the PRTF demonstration states and many CMHI projects included peer-to-peer support services for the parents, guardians, or caregivers of children and youth with mental health conditions, as well as peer-to-peer support services for youth. State specific information regarding states’ peer services for parents and youth can be found at: http://familyinvolvementcenter.org/index2.php?option=com_content&do_pdf=1&id=3 (Arizona) • http://rosied.org/resources/Documents/Family%20Support.program%20specs.final.doc (Massachusetts) • http://medschool.umaryland.edu/uploadedFiles/Medschool/Departments/Department_of_ Psychiatry/Division_of_Child_and_Adolescent_Psychiatry/Child_and_Adolescent_Ment al_Health_Innovations_Center/RTC_Docs/COMAR%2010.09.79-FINAL.pdf (Maryland) The CMS guidance regarding the use of peer supports for peer to peer services for parents, guardians and caregivers can be found at: http://www.medicaid.gov/Medicaid-CHIP-ProgramInformation/By-Topics/Benefits/Downloads/Clarifying-Guidance-Support-Policy.pdf Intensive In-Home Services Intensive in-home services are therapeutic interventions delivered to children and families in their homes and other community settings to improve youth and family functioning and prevent out-of-home placement in inpatient or PRTF settings. The services are typically developed by a team that can offer a combination of therapy from a licensed clinician and skills training and support from a paraprofessional. The components of intensive in-home services include individual and family therapy, skills training and behavioral interventions. Typically, staff providing intensive in-home services have small caseloads to allow them to work with the child and family intensively, gradually transitioning them to other formal and informal services and supports, as indicated. Information on such services from these states can be found at: • • •
http://www.ct.gov/dcf/cwp/view.asp?a=2558&q=314366 (Connecticut) http://www.mh.state.oh.us/what-we-do/provide/intensive-home-basedtreatment/index.shtml (Ohio) http://www.dphhs.mt.gov/mentalhealth/children/i-home/PolicyManual.pdf (Montana)
Respite Services
Informational Bulletin – Page 5 Respite services are intended to assist children to live in their homes in the community by temporarily relieving the primary caregivers. Respite services provide safe and supportive environments on a short-term basis for children with mental health conditions when their families need relief. Respite services are provided either in the home or in approved out-ofhome settings. All CMHI and PRTF demonstrations provide some form of respite care. Descriptions of respite services can be found at: • • •
https://myshare.in.gov/FSSA/dmha/caprtf/Providers/Service%20Definitions/Service_Defi nitions_YR_2_2008-09_50809.pdf (Indiana) http://new.dhh.louisiana.gov/assets/docs/BehavioralHealth/LBHP/LBHPSvcsManv4b.pdf (Louisiana) http://www.dphhs.mt.gov/mentalhealth/children/i-home/PolicyManual.pdf (Montana)
Mobile Crisis Response and Stabilization Services Mobile crisis response and stabilization services are instrumental in defusing and de-escalating difficult mental health situations and preventing unnecessary out-of-home placements, particularly hospitalizations. Mobile crisis services are available 24/7 and can be provided in the home or any setting where a crisis may be occurring. In most cases, a two-person crisis team is on call and available to respond. The team may be comprised of professionals and paraprofessionals (including peer support providers), who are trained in crisis intervention skills and in serving as the first responders to children and families needing help on an emergency basis. In addition to assisting the child and family to resolve the crisis, the team works with them to identify potential triggers of future crises and learn strategies for effectively dealing with potential future crises that may arise. Residential crisis stabilization provides intensive short term, out of home resources for the child and family, helping to avert the need for psychiatric inpatient treatment. The goal is to address acute mental health needs and coordinate a successful return to the family at the earliest possible time with ongoing services. During the time that the child is receiving residential crisis stabilization, there is regular contact between the team and the family to prepare for the child's return to the family. An example from a state that provides crisis stabilization service can be found at: http://www.bhc.state.nm.us/pdf/H2011%20Crisis.pdf (New Mexico) Flex Funds (Customized Goods and Services) Flex funds may be used under certain Medicaid authorities to purchase non-recurring, set-up expenses (such as furniture, bedding, or clothing) for children and youth. For example, flex funds may be requested for the one-time payment of utilities or rent or other expenses as long as the youth and family demonstrate the ability to pay future expenses. Flex funds can be particularly useful when a youth is transitioning from the residential treatment setting to a family or to independent living. It should be noted that flex funds can be used for purposes other than transition, such as academic coaching, memberships to local girls or boys clubs, etc. Flex funds are only available to individuals participating in various Medicaid waivers and/or the 1915(i) program. Examples of states that have created flexible funding for goods and services for children and youth with mental health conditions are listed below:
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http://www.omh.ny.gov/omhweb/guidance/hcbs/html/FamilyFlexFundLetter.htm (New York) https://myshare.in.gov/FSSA/dmha/caprtf/Providers/Service%20Definitions/Service_Defi nitions_YR_2_2008-09_50809.pdf (Indiana)
Trauma-Informed Systems and Evidence-Based Treatments Addressing Trauma Across the country, including system of care sites and the PRTF demonstration states, there is an increased awareness of the impact of trauma. Children and youth with the most challenging mental health needs often have experienced significant trauma in their lives. The Adverse Childhood Experiences (ACE) study has reported short and long-term outcomes of childhood exposure to certain adverse experiences that include a multitude of mental health, health and social problems. More information on the ACE study can be found at: http://www.cdc.gov/ace/findings.htm To begin addressing the trauma needs, many states are providing training and coaching for their clinicians in evidence-based practices such as Trauma-Focused Cognitive Behavioral Therapy (TF-CBT) and Parent-Child Interaction Therapy (PCIT). Many states are also exploring new policies and practices to ensure that they have trauma-informed systems of care that will be less likely to re-traumatize the children and youth they serve. To assist in developing new policies, practices, training, and coaching for trauma-informed care, a manual and documentary film is being developed in a cooperative effort with the participating states. Additional resources related to trauma can be found on the National Child Traumatic Stress Network website at: http://www.nctsn.org/ Other Home and Community-Based Services States have also developed service definitions for a variety of additional home and communitybased services that have proven to be important for children and youth with mental health conditions to be successful in the community. This includes: mentoring, supported employment for older youth, and consultative services. These types of services may be provided through 1915(c) waivers and the 1915(i) program. Additional information regarding the description of each of the PRTF demonstration state’s service arrays and definitions, including those listed in “other home and community-based services can be found in the 2008 Implementation Status Report at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/DeliverySystems/Downloads/CBA-Implementation-Status-Report-Final.pdf Medicaid Authorities and Demonstration Programs States have significant flexibilities in the Medicaid program to cover mental health and substance use services for youth with significant mental health conditions. CMS staff are available to states to further discuss how they can use the authorities below to promote better coverage.
Informational Bulletin – Page 7 1905(a) Authority Many of the services that were core to the success of the CMHI and PRTF Demonstration program can be covered through 1905(a) authority, generally through targeted case management or rehabilitative services. States that have used the 1905(a) authority as a foundation for their benefit design for children and youth with significant mental health conditions include: Massachusetts, Connecticut, New Mexico and Hawaii. More information about some of these states can be found at: • http://www.mass.gov/eohhs/gov/commissions-and-initiatives/cbhi/ (Massachusetts) • http://www.bhc.state.nm.us/BHServices/ServiceDefinition.html (New Mexico) 1915(c) Authority Some states have used the 1915(c) Home and Community-Based Services (HCBS) program to develop good benefit designs for children and youth with significant mental health conditions. The nine states that participated in the PRTF five-year demonstration grants utilized the 1915(c) waiver authority. These states included: Alaska, Georgia, Indiana, Kansas, Maryland, Mississippi, Montana, South Carolina and Virginia. Eight other states also use the 1915(c) authority for these children and youth. These states include: New York, Michigan, Wisconsin, Louisiana, Texas, Iowa, Kansas, and Wyoming. States have used these HCBS waivers to expand their array of home and community-based services and supports for this population with a view towards improving outcomes and reducing costs. Below are links to some states’ 1915(c) HCBS Waivers for children and youth with significant mental health conditions: https://myshare.in.gov/FSSA/dmha/caprtf/PRTF%20Transition%20Waiver/ 1915c%20PRTF%20Transition%20Waiver_CMS%20Application.pdf. For more information about 1915(c) Home and Community Based Waivers, please access Medicaid.gov: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Home-andCommunity-Based-1915-c-Waivers.html 1915(b) Authority 1915(b) Waivers are one of several options available to states that allow the use of managed care in the Medicaid Program. When using the 1915(b) authority, states have various options for implementing managed care including the authority to restrict the types of providers that people can use to access Medicaid benefits and the ability to use the savings to the state from a managed care delivery system to provide additional services or restrict the number or type of providers who can provide specific Medicaid services. Louisiana, Michigan, Iowa and California are examples of states that have used the 1915(b) authority (and sometimes a combination of 1915(b) and 1915(c) and other authorities) for their children’s mental health delivery systems. More information regarding their managed care approaches for these delivery systems can be found at: • • •
http://new.dhh.louisiana.gov/index.cfm/page/538 (Louisiana) http://www.ime.state.ia.us/Reports_Publications/RFP/IowaPlan.html (Iowa) http://www.michigan.gov/documents/mdch/Managed_Speciality_Services_and_Supports _Waiver_364598_7.pdf (Michigan)
Informational Bulletin – Page 8 1115 Authorities Section 1115 of the Social Security Act gives the Secretary of HHS authority to approve experimental, pilot, or demonstration projects that further the objectives of the Medicaid and the Children’s Health Insurance Program (CHIP). These demonstrations give states additional flexibility to design and improve their programs, to demonstrate and evaluate policy approaches, such as providing services not typically covered by Medicaid, and using innovative service delivery systems that improve care, increase efficiency, and reduce costs. Many section 1115 demonstrations include mental health services for children and youth. Most recently, Arizona received approval for a section 1115 demonstration that integrates physical and behavioral health services provided to children enrolled in the Children’s Rehabilitative Services program. More information on this section 1115 demonstration can be found at: http://www.azahcccs.gov/reporting/federal/waiver.aspx. 1915(i) State Plan Amendment Section 1915(i) state plan amendment (SPA) provides an opportunity for states to amend their state Medicaid plans to offer intensive home and community-based behavioral health services that were previously provided primarily through 1915(c) HCBS waivers programs. Intensive care coordination, respite, parent and youth support partners, and other services can be offered under 1915(i) and serve children and youth with significant mental health conditions. Under 1915(i) states may not waive the requirement to provide services statewide, nor can they limit the number of participants in the state who may receive the services if they meet the population definition. Unlike the 1915(c) waiver program, the 1915(i) delinks the provision of services with participants meeting an institutional level of care. In order to target the initiative and limit costs, states may identify a specific population and establish additional needs-based criteria. For example, a state could develop need-based criteria only for children and youth at risk of removal from their homes or in need of intensive community-based services and behavioral interventions in their homes, schools, or communities to control aggressive behavior towards self and others. An example of a state with approved 1915(i) SPAs for children and youth with significant mental health conditions is: • http://www.dphhs.mt.gov/mentalhealth/children/i-home/PolicyManual.pdf (Montana) For more information about the 1915(i) SPA and beneficiary eligibility please access Medicaid.gov: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/ByTopics/Long-Term-Services-and-Support/Home-and-Community-Based-Services/Home-andCommunity-Based-Services-1915-i.html. Section 2703 Health Homes Health homes (Affordable Care Act-Section 2703) are a Medicaid state plan option available for states to design programs to better serve persons with chronic conditions, including serious and persistent mental health conditions. Health homes must provide for an individual’s primary care and disability-specific service needs, and must provide care management and coordination for all of the services needed by each enrolled individual. The major goal is to provide more comprehensive, coordinated, and cost-effective care for individuals with chronic conditions, including children and youth with serious emotional disturbances, than generally provided when services are fragmented across multiple health providers and organizations.
Informational Bulletin – Page 9 Federal match of 90 percent is available for 2 years for the following services provided through the health home authority: comprehensive care management, care coordination, health promotion, comprehensive transitional care from inpatient to other settings including appropriate follow-up care, individual and family support, referral to community and support services, and the use of health information technology to link services. The health home state plan optional benefit under section 1945 of the Social Security Act is statutorily-defined as services for “eligible individuals with chronic conditions” and does not allow for coverage to be limited to a subcategory of individuals. However, CMS recognizes that the service needs of individuals within a population may vary, and therefore that the treatment modalities, protocols and provider network may involve different approaches for children as compared to adults for key health home activities such as coordinating, managing and monitoring services. States may develop different approaches that serve different age groups, based on distinctions between the health home needs of the population. Therefore, CMS will allow states to submit separate SPAs for children and youth with serious and persistent mental health conditions as long as another SPA for adults with serious and persistent mental health condition is submitted simultaneously. States that have health homes SPAs specifically for individuals (including children and youth) with these conditions include Missouri, New York, and Ohio. Information on these approved state plans can be found at: http://www.medicaid.gov/State-Resource-Center/Medicaid-StateTechnical-Assistance/Health-Homes-Technical-Assistance/Approved-Health-Home-State-PlanAmendments.html. For more information about health homes, go to Medicaid.gov: http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-TermServices-and-Support/Integrating-Care/Health-Homes/Health-Homes.html. Money Follows the Person Rebalancing Demonstration (MFP) MFP provides an opportunity for states to offer community based services and supports to individuals transitioning from qualifying institutions to qualifying home and community based settings, including children and youth 21 years of age and under who have been in PRTFs or psychiatric hospitals for at least 90 consecutive days and are transitioning to community settings, including family homes, foster homes, alternative family-based homes, or other communitybased settings. MFP allows an enhanced federal match equal to an additional 50 percent of the state share with an upper limit of 90 percent. The enhanced federal match on qualified Medicaid services is available for 365 days after each individual’s discharge from the institution. The state may also provide additional supplemental transition services to support the youth to successfully move into the community, including but not limited to household set-up, home modifications, or peer support. States are required to have the ability to meet the needs of the children and youth after the 365-day period. The MFP is a good vehicle for states to transition youth from PRTFs to the community, particularly because the average length for youth needing intensive community based services after discharge in the PRTF demonstration was consistently close to the 365 days – the allowable service duration of enhanced match under MFP. If the children and youth continue to need services and supports after 365 days in the community, services covered under other Medicaid authorities discussed above may be provided to address their needs.
Informational Bulletin – Page 10 For more information about MFP, go to Medicaid.gov: http://www.medicaid.gov/MedicaidCHIP-Program-Information/By-Topics/Long-Term-Services-and-Support/Balancing/MoneyFollows-the-Person.html Balancing Incentive Program The Balancing Incentive Program, created by the Affordable Care Act (Section 10202), authorizes grants to states to increase access to non-institutional, long-term services and supports (LTSS) and was effective as of October 1, 2011. The Balancing Incentive Program can help states transform their long-term care service systems by lowering costs through improved systems performance and efficiency, creating tools to help consumers with care planning and assessment and improving quality measurement and oversight. Enhanced federal match is available to states for 4 years. To participate in the Balancing Incentive Program, a state must have spent less than 50 percent of total Medicaid medical assistance expenditures on noninstitutionally based LTSS for fiscal year 2009. The Balancing Incentive Program also provides new ways to serve more people in home and community-based settings, helping states comply with their obligations under the integration mandate of the ADA, as interpreted by the Olmstead decision. Most states that have approved applications under this program include mental health services in their rebalancing efforts. More information regarding this program can be found at http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-TermServices-and-Support/Balancing/Balancing-Incentive-Program.html. Quality Reporting The Children’s Health Insurance Program Reauthorization Act of 2009 (CHIPRA), the Health Information Technology for Economic and Clinical Health Act of 2009 (HITECH), and the Affordable Care Act all introduced new clinical quality reporting programs that apply to Medicaid and CHIP providers. These clinical quality reporting programs add to existing Medicare quality reporting programs, as well as measure sets that may be used by state Medicaid programs and private plans, such as the Healthcare Effectiveness Data and Information Set (HEDIS) measures. Several core measure sets have now been identified, which include a number of measures related to hospital readmission rates for children and youth with mental health and substance use conditions. Some specific reporting measures that states may consider in their approach to their tracking efforts are listed below. Please note that the quality measures and measure sets noted below are not exhaustive and will continue to evolve. Follow-up after hospitalization for mental illness among patient 6 years and older (NQF #576). Applicable measure sets include: – CHIPRA Core Set of Pediatric Quality Measures – Initial Core set of Health Care Quality Measures for Medicaid- Eligible Adults – Health Home Core Set • Child and Adolescent Major Depressive Disorder: Suicide Risk Assessment (NQF #1365). Applicable measure sets include: – HITECH Act: Meaningful Use of Electronic Health Records
Informational Bulletin – Page 11 In addition to these measures, the CMHI and PRTF demonstration program collected specific measures that providers were required to provide as a condition of participation in these programs. These measures consisted of a set of process measures that were related to the goals of the program, especially regarding safety. There are other resources states may consider for developing specific outcomes for children and youth with significant mental health conditions, including: • •
Child and Adolescent Functional Assessment Scale (CAFAS) http://www.fasoutcomes.com/Content.aspx?ContentID=12 Child and Adolescent Needs and Strengths (CANS) – https://dmha.fssa.in.gov/DARMHA/Documents/IN%20Short%20CANS%20Form%20517_712011_Manual.pdf
Report to the President and Congress Medicaid Home and Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration As Required by the Deficit Reduction Act of 2005 (P.L. 109-171) From the Department of Health and Human Services Office of the Secretary
Kathleen Sebelius Secretary of Health and Human Services July 2013
Executive Summary In 2005, Congress authorized a five-year Demonstration project to test whether children and youth who meet the requirements to be served in a psychiatric residential treatment facility (PRTF) could successfully and cost effectively be served in the community. The Centers for Medicare & Medicaid Services (CMS) selected ten states to compare effective ways of providing home and community-based services (HCBS) as an alternative to care in PRTFs for children and youth with serious emotional disturbances enrolled in the states’ Medicaid program. The Demonstration served children and youth who were either “diverted” from being served in a PRTF, or were “transitioned” from a PRTF into the community, often earlier than would have been possible without the Demonstration. By the fourth year of the Demonstration, the states provided community-based alternatives to institutional treatment to over 4,000 children and youth. Using a “systems of care” approach, the Demonstration successfully enabled participants to either improve or maintain their functioning status at less than a third of the cost of serving them in an institution. The functional status for the children and youth, diverted or transitioned, was measured in the domains of mental health, juvenile justice, school functioning, alcohol and other drug use and social support. All participants improved or maintained their functional status in these domains. However, the children and youth with the highest levels of need consistently showed improved mental health status, less frequent interaction with law enforcement, better performance in school, reductions in substance abuse and better relationships with peers and family throughout periods measured during the project. Background Over the last decade, PRTFs have become a major provider for children and youth with mental illness and serious emotional disorders requiring an institutional level of care. PRTFs are not recognized as hospitals, nursing facilities, or intermediate care facilities for individuals with intellectual disabilities under the Medicaid statute. Therefore, states have been unable to use the 1915(c) waiver authority to provide home and community-based alternatives to institutional care, which would keep children and youth in their homes and with their families or in the community. In July 2003, the New Freedom Commission on Mental Health released a report, Achieving the Promise: Transforming Mental HealthCare in America, which outlined significant barriers to providing community-based services for children and youth with serious emotional disturbances as an alternative to placing them in PRTFs. Children, youth, and families typically have little influence over decisions affecting service delivery, planning, and the use of financing to deliver care. When comprehensive community-based options are unavailable, some children and youth may end up incarcerated in the juvenile justice system, institutionalized for long periods, or in the care of the child welfare system. To address this problem, the Commission recommended that CMS conduct a Medicaid Demonstration project to test community-based alternatives to institutional care.
Report to Congress on Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration
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In response to the statutory barriers to providing Medicaid HCBS to children and youth with serious emotional disturbances, the Medicaid Home and Community-Based Alternatives to Psychiatric Residential Treatment Facilities Medicaid Demonstration project was authorized by the Congress in section 6063 of the Deficit Reduction Act of 2005 (DRA, P.L. 109-171). The Demonstration project allowed up to ten states to compare effective ways of providing care for children and youth enrolled in the state’s Medicaid program. Specifically, the demonstration tested the effectiveness of HCBS as an alternative to care in PRTFs. To eliminate the statutory barrier to providing HCBS to children and youth who meet a PRTF institutional level of care, for purposes of the Demonstration, PRTFs were deemed facilities as specified in section 1915(c) of the Social Security Act so participating states could receive federal Medicaid matching funds for these services. The project targeted children and youth who might not have otherwise been eligible for Medicaid-funded, intensive community-based services and supports available through a 1915(c) waiver authority. CMS awarded $217 million to ten states, with each state receiving between $15 million and $50 million each over the grant period (FY 2007 through FY 2011) and the remaining $1 million was awarded for the evaluation of the demonstration. Each participating state was required to provide non-federal Medicaid matching funds. One of the ten states, Florida, did not continue in the Demonstration after the first year due to difficulty securing the non-federal matching funds necessary to implement the program. The nine fully participating states were Alaska, Georgia, Indiana, Kansas, Maryland, Mississippi, Montana, South Carolina, and Virginia. The development of home and community-based services in these states was built on historical funding to create systems of care from the Substance Abuse and Mental Health Services Administration (SAMHSA) Children’s Mental Health Initiative (CMHI) grant program. An independent national evaluation of the Medicaid Home and Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration was conducted by IMPAQ International and submitted to CMS in May of 2012. Data and lessons learned from this Demonstration and a national evaluation of SAMHSA’s Systems of Care grant program were used to issue the recent SAMHSA-CMS Informational Bulletin, “Coverage of Behavioral Health Services for Children, Youth and Young Adults with Significant Mental Health Conditions.”
Design of the Evaluation As part of the Demonstration, Section 6063 of the DRA required an evaluation. For purposes of this evaluation, CMS constructed two specific questions: Question One: Did the Demonstration services result in the maintenance of, or improvement in, a child’s or youth’s functional status? Question Two: Was it cost-effective to provide coverage of home and community-based services as an alternative to psychiatric residential treatment for children and youth enrolled in the Demonstration?
Report to Congress on Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration
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The evaluation addressed these two questions, as well as additional questions introduced by CMS to help identify successful strategies and the subpopulations for which those strategies are most effective. The evaluation was designed to develop reliable cost and utilization data to evaluate the effectiveness of community-based service-delivery models. Summary Findings The evidence from the evaluation yields the following results: Question One: Did the Demonstration services result in the maintenance of, or improvement in, a child’s or youth’s functional status? Findings: Overall, the project successfully enabled children and youth to either maintain or improve their functional status. The common theme across all states is that children and youth with the highest level of need at baseline benefited the most from participating in the Demonstration. These participants showed the most improvement in the following areas: decreased juvenile justice involvement, increased school functioning, decreased alcohol and other drug use and increased social Major Findings support, over the most follow-up periods. The findings 1. Children and youth also indicate that children and youth that were transitioned generally maintained or out of PRTFs had better outcomes on average than improved their functional children who were diverted from PRTFs. status when receiving services in the community. Question Two: Was it cost effective to provide coverage of home and community-based services as an alternative 2. Waiver services cost to psychiatric residential treatment for children and youth about a third (32 percent) enrolled in the Demonstration? of comparable services provided in PRTFs. Findings: For all nine states over the first three Demonstration years for which cost data was available to be collected, there was an average savings of 68 percent. In other words, the waiver services cost only 32 percent of comparable services provided in PRTFs. The Demonstration proved cost effective and consistently maintained or improved functional status on average for all enrolled children and youth. As discovered through satisfaction surveys, it is encouraging that enrollees and their families liked the outcomes of the Demonstration and their involvement in the treatment, as well as other aspects of the Demonstration. State Demonstration Enrollment Profiles The Demonstration enabled states to use the 1915(c) waiver program for the first time and receive Medicaid reimbursement to serve a population of children and youth with serious emotional disturbances in their homes and communities, rather than in PRTFs. With any
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Demonstration, challenges are expected. The nine states, to varying degrees, experienced initial delays in enrollment due to factors such as: • • • • • •
Recruiting providers of home and community based services; Training staff to address the complex needs of the children who would have typically been served in an institutional setting; Educating families to assure them that their children could safely be served in the community with the appropriate planning and intensive services; Developing partnerships among the child-serving systems that may not have been accustomed to working together; Addressing the requirements associated with receiving Medicaid reimbursement including programming for Medicaid Management Information Systems (MMIS); and, Implementing state regulatory changes as needed.
The initial slow enrollment patterns changed and actual enrollment grew over the four waiver years included in this report. The growth of state provider networks and geographic expansion of the project helped spur enrollment. Demonstration Project Growth Year 2008 Children and 253 Youth Served
2009
2010
2011
978
1300
4000
Mississippi and Indiana had the largest number of children enrolled in the project since its inception, together accounting for over half of the total children and youth enrolled in the Demonstration. Some of Mississippi’s early success lies in its education and outreach initiatives. Indiana’s success can be attributed both to an existing workforce trained in the wraparound practice model within a system of care framework and a team of statewide staff dedicated to working only on the Demonstration project. Male children were more likely to be enrolled in the Demonstration than female children. The project served children across different age groups, the highest percent being youth between the ages of 15 and 18. Final Analytical Sample by Gender and Age -All States Key Individual Gender Characteristics N %
Age
Male
Female
<6
6 to 11
12 to 14
15 to 18
2036 63.7
1162 36.3
26 0.8
904 28.3
996 31.1
1206 37.7
Report to Congress on Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration
>18 Unknown
21 0.7
45 1.4
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Findings on Assessment-Based on Functional Outcomes One of the key evaluation questions was whether there was an improvement or maintenance of the children’s functional status. To address this issue, it was important to assess changes in the level of functioning of the children and youth in the Demonstration by focusing on several outcomes that are common across grantees. All the common outcome measures reflect changes in five selected domains: mental health, juvenile justice, school functioning, alcohol and other drug use, and social support. The grantees used one of three instruments to assess changes in children’s behavioral and mental health functional outcomes: the Child and Adolescent Needs and Strengths (CANS), the Child & Adolescent Functional Assessment Scale (CAFAS) and the Child Behavioral Checklist (CBCL). Detailed information about each of the instruments can be found in Appendix A. Each of these instruments collects a set of outcome measures that relates to the functional domains under review. Functional outcomes data from these instruments and other Demonstration waiverspecific measures were collected to form a Minimum Data Set (MDS). These data were then used to generate an overall picture of children and youth’s functional outcome changes after project participation. The MDS collected data at 6-month intervals and disenrollment, which enabled the evaluation – at each follow-up point – to analyze a child or youth’s change in functioning from baseline. Although the findings vary by domain, most children showed improvements for most domains and most follow-up periods. The functional improvements, which reflect changes in level of need (LON) rather than simple changes in the absolute score for a particular instrument, indicate a substantial likelihood of improvement on average for children at most LON and regardless of their admission status (diversion or transition). These findings are quite positive and reflect the need for a more permanent format for HCBS mental health programs for children and youth. The findings also provide rich information on what domains are more susceptible to change and which groups of children are likely to see the most positive changes in functioning as a result of the Demonstration. More detailed findings indicate that the Demonstration had particularly positive effects on mental health, family functioning, and alcohol and other drug use. The common theme across all state grantees is that children and youth with the highest LON at baseline benefited the most from participating in the Demonstration. These children showed the most improvement, across the most domains, and over the most follow-up periods. Children and Youth with Highest Level of Need (LON) Duration in Demonstration Waiver Functional Status Domains 6 Months 12 Months 18 Months Maintained Maintained Improved Mental Health Improved Improved Improved Juvenile Justice Maintained Improved Improved School Functioning Improved Improved Improved Alcohol & Other Drug Use Improved Improved Maintained Social Support Findings Related to Cost Effectiveness Report to Congress on Community-Based Alternatives to Psychiatric Residential Treatment Facilities Demonstration
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In response to question two, as a result of the Demonstration, all participating states have seen significant savings in the costs of caring for children and youth with severe emotional disorders, although the extent of the savings varies by state. The three states with the largest number of participants (Indiana, Kansas, and Mississippi) had average savings of $20,000 to $30,000, close to 45 percent savings over comparable PRTF services. Initial outreach/education in Mississippi and access to a trained and existing provider networks in Indiana and Kansas may explain why these states experience higher cost than the 9 states on average. The ability to provide and expand services rapidly to meet the needs of the participants in a more comprehensive manner could explain overall high community based costs. Cost effectiveness of the Demonstration was evaluated by comparing each stateâ&#x20AC;&#x2122;s fiscal yearâ&#x20AC;&#x2122;s expenditures on HCBS services provided under the Demonstration to data on PRTF expenditures that states submitted annually. This information provided data on expenditures by participant, by service, per waiver year. To calculate the average per capita cost, the data submission included the number of users per service and the total number of unduplicated waiver participants for which claims were paid. These calculations were made by using the three years of cost data available for the evaluation. Across the first year of the Demonstration and through year three of the evaluation, all states taken together had Demonstration costs around 32 percent of the average per capita total Medicaid costs for services in PRTFs, an average per capita savings of $36,500 to $40,000 across the states. Demonstration costs increased as a proportion of the average per capita total Medicaid costs for services in institutions; however, all the Demonstration projects remained cost effective. The rising trend may be due to more Demonstration waiver services being added as states solidified their project.
Waiver Year
Average Per Person 1915(c) Cost
Average Per Person PRTF Cost
1915(c) Cost as a Percentage of PRTF Cost
WY 1
$9,792
$42,343
22%
WY 2
$12,244
$55,783
28%
WY 3
$23,122
$79,452
32%
Average Years $15,869 $55,107 32% 1 to 3 (1) Source: Department of Health and Human Services, Centers for Medicare & Medicaid Services: Medical Assistance Expenditures by Type of Service for 1915(c) HCBS Waiver, CMS MOD-PRTF DEMO 372 report: (1) Waiver years (WY) 1 to 3 include all expenditures for an estimated 2,820 children, however, expenditures for the average years row, excludes Waiver and Medicaid costs for Grantees with less than 5 children per waiver year because of the likelihood of a biased estimate due to the small number of observations. Estimates for this row are based on 2,808 children.
Conclusion
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The Demonstration has easily met cost effectiveness tests and on average has consistently maintained or improved functional status for all children and youth. In addition, as discovered through satisfaction surveys, families and children liked the outcomes of the Demonstration and their involvement in the treatment, as well as other Demonstration aspects. States have reacted positively to the improved outcomes seen for children and youth participating in the Demonstration and seven states have received approval for “bridge” 1915(c) waivers. These bridge waivers permit states to continue services to the children and youth who started receiving services under the Demonstration but not to additional children or youth because of the statutory barrier to providing 1915(c) waiver services to children and youth meeting a PRTF level of care. The seven states operating bridge waivers have indicated that they would be interested in applying for a 1915(c) waiver if the statute permitted a waiver for this purpose. Three states are using or considering the use of the 1915(i) state plan authority which allows children and youth to receive services in the community without the institutional level of care as long as the participants are at or below 150 percent of the Federal Poverty Level (FPL). However under this authority, the only way to increase the income limits would be for the children or youth to meet the same institutional level of care required for 1915(c) waivers. Income level restrictions, statewide requirements and the inability under the authority to regulate the number of participants in the program make this alternative less attractive to states. The findings highlight the positive benefits of the project and the desire of states to sustain the waiver beyond the Demonstration period. The improved outcomes and positive reactions to the Demonstration may have increased the involvement of the participating children, youth and families, which is likely to have made the project even more successful in program adherence and behavior modification. In order for the objectives of the Demonstration to continue, the statutory barrier to providing HCBS to children and youth who meet a PRTF institutional level of care criteria would have to be eliminated by identifying PRTFs as a designated institution under section 1915(c) of the Social Security Act so states could receive federal Medicaid matching funds for waiver services. For more detailed information regarding findings described in this report, please see “The National Evaluation of the Medicaid Demonstration Waiver Home- and Community-based Alternatives to Psychiatric Residential Treatment Facilities Final Evaluation Report” that can be found on the Medicaid.gov website: http://www.medicaid.gov/Medicaid-CHIP-ProgramInformation/By-Topics/Delivery-Systems/Institutional-Care/Alternatives-to-PsychiatricResidential-Treatment-Facilities-Demonstration-PRTF.html .
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Appendix A: Functional Assessment Instruments The CANS assessment refers to a group of outcome management tools developed by John Lyons (Lyons, 2009) together with many stakeholders across multiple states. The CANS instrument is used in Indiana, Maryland, Mississippi, and Virginia, which together covered more children in the Demonstration waiver than were covered by the remaining states using the other two instruments. The CANS was developed to assess the strengths and needs of children and youth who have emotional and behavioral disorders, and to aid in the development of treatment plans to guide service delivery. The core domains of the CANS Comprehensive Multisystem Assessment are life functioning, child strengths, acculturation, caregiver strengths, caregiver needs, child behavioral/emotional needs, and child risk behaviors. Extension modules are triggered by core questions and include developmental disability, health, sexuality, adoption, trauma, substance use, violence, juvenile justice, fire setting, and psychotropic medication. Specific items or questions are the same across all versions. Each CANS item has four levels of assessment and each level translates into separate needs and strengths assessments. The basic scoring metric for CANS items is 0 through 3. In the case of needs assessment, a score of 0 indicates no evidence of need, while a score of 3 indicates that immediate/intensive action is required. In the case of strength assessments, 0 reflects a centerpiece strength while 3 shows no strength identified. The CBCL (Achenbach & Rescorla, 2001) is an extensively used parent-report questionnaire that allows clinicians and researchers to assess a wide range of behavior problems and competencies in children and youth. The CBCL functional assessment instrument is used in Kansas, Montana, and South Carolina. The CBCL uses T scores to sort subjects into three groups: in the normal range, on the border line, or in the clinical range. These clinical categories would have been ideal for developing the low, middle, and high needs categories (as done in the CANS), while offering enhanced clinical implications of the results. However, due to the lack of T scores in the Demonstration waiverâ&#x20AC;&#x2122;s MDS, in determining children and youthâ&#x20AC;&#x2122;s baseline needs categories the cut-off points were based on the raw score. In particular, the profile of competence/syndrome score sheet in the CBCL Manual was used to identify the cut-off points closest to those by T scores to approximate the clinical categorization. This enhances the clinical implications of cut-off points by raw scores and, thus, analysis results. The CAFAS (Hodges 1990, 1994) is an inventory for measuring functional impairment in children and adolescents originally designed for use in a mental health policy research project. The CAFAS inventory used in the Demonstration waiver consists of five child scales: Role Performance, Thinking, Behavior toward Self and Others, Mood/Emotions, and Substance Abuse, as well as two child caregiver scales: Basic Needs, and Family Social Support. The CAFAS scale is used in Alaska, Georgia, and Kansas.
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