LINKING AND ALIGNING CARE COORDINATION PLAN Project BLOOM is an early childhood mental health system of care grant that is funded by the Substance Abuse Mental Health Services Agency and administered by JFK Partners/University of Colorado Health Sciences Center and the Colorado Department of Human Services/Division of Mental Health. Compiled by: Project BLOOM Staff Project BLOOM Linking and Aligning Leadership Committee Project BLOOM Linking and Aligning Forum Attendees For Project BLOOM s Linking and Aligning Project September 30, 2008 Supported by grant SM 54471 from the Substance Abuse and Mental Health Services Administration, US Department of Health and Human Services. 1
EXECUTIVE SUMMARY Care coordination has been identified by the Institute of Medicine as one of the key strategies for potentially improving the effectiveness and efficiency of the health care system. 1 In October 2007, Project BLOOM (BLOOM) received a supplemental grant from the Substance Abuse and Mental Health Services Administration (SAMHSA) to, in part, develop a care coordination model focusing on the integration of behavioral and physical health for children. To meet this objective, BLOOM sponsored four monthly forums between May and August, 2008, in which 91 stakeholders from across the state were invited to attend. Forum participants, under the direction of staff and Leadership members, developed a care coordination plan (this full document) that includes a description of care coordination principles, values, a mission and outcomes; essential qualities of care coordination; recommendations for families, providers, and systems level agencies on how to increase the efficiency with which care coordination services are provided and received; and recommended next steps. This document is intended for three audiences: (1) Families/consumers of care coordination related services; (2) Care coordinators and providers of services 2 ; and (3) Systemslevel agencies that develop care coordination policies and programs. Forum participants determined that care coordination services is centered on the following five essential qualities: (1) Relationship Building; (2) Culturally Competent Care; (3) Family Focused and Strengths Based Services; (4) Active Interagency Collaboration/Information and Referral; and (5) Process and Outcomes Evaluation. While this document includes recommendations for each of the three target audiences, the following recommendations are applicable for all three. 1. Promote and have access to a client centered electronic safety net personal health record for improving care coordination and allowing 24/7 access of information 2. Universal health care that covers all health (oral, behavioral, mental, and physical) and covers long term care 3. The Colorado Medical Home Standards (Appendix 1) and System of Care Values and Guiding Principles (Appendix 2) are applied and prioritized throughout the provision and receipt of care coordination services 4. Adopt the no wrong door process by which families/consumers access care coordination services 5. Identify and participate in the development of outcomes and support the monitoring and evaluation of these outcomes 6. Utilize and be the recipient of culturally competent practices 7. Engage in continued multi disciplinary system assessment in order to identify unmet needs Recommended next steps include suggested revisions to this document and the application of this document s concepts at the policy, education, and community level. 1 McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, et al., June 2007 2 Examples of the types of providers for whom this document would be useful include: mental health specialists, physical therapists, occupational therapists, substance abuse specialists, family physicians, pediatricians, nurses, licensed social workers, etc. 2
Project BLOOM Staff: Jean M. Cimino, MPH State Coordination Consultant, Project BLOOM Sarah Hoover, M.Ed. Director, Project BLOOM Cordelia Robinson Rosenberg, PhD, RN Director, JFK Partners Claudia Zundel, MSW Principal Investigator, Project BLOOM Project BLOOM Linking and Aligning Leadership Committee: Barbara J. Deloian, PhD, RN, CPNP Health Services Director, Children and Youth with Special Health Care Needs Colorado Department of Public Health and Environment Tom Dillingham Executive Director, The Federation of Families for Children s Mental Health Colorado Chapter José Esquibel Director, Interagency Prevention Systems; Chair, Colorado Prevention Leadership Council Prevention Services Division, Colorado Department of Public Health and Environment Eileen Forlenza Director, Colorado Medical Home Initiative, Children and Youth with Special Health Care Needs Unit, Colorado Department of Public Health and Environment Doyle Forrestal Director of Public Policy, Colorado Behavioral Health Council Julie Holtz, MS Chief Executive Officer, Behavioral HealthCare, Inc. Ken Seeley, EdD President and Chief Executive Office, Colorado Foundation for Families and Children Kathy Watters, MA Director, Children and Youth with Special Health Care Needs Colorado Department of Public Health and Environment Project BLOOM Linking and Aligning Forum Attendee Affiliation: Asian Pacific Development Center Colorado Department of Public Health and Boulder County Public Health Environment Centennial Mental Health Center Family Resource Centers Center for Systems Integration Federation of Families for Children s Mental Children s Hospital Health Colorado Chapter Clinica Tepeyac Foothills Behavioral Health Colorado Behavioral Health Council Grupo Vida Colorado Department of Health Care Policy Colorado Department of Health Care Policy and Financing and Financing Jefferson Center for Mental Health JFK Partners 3
Kaiser Permanente Colorado Larimer Center for Mental Health Mental Health Center of Boulder and Broomfield Counties North Range Behavioral Health Northeast Behavioral Health Parent Leader Parent of Children with Special Needs The Arc of Arapahoe and Douglas Tri County Health Department Vroon VanDenBerg, LLC West Central Mental Health Center 4
BACKGROUND Quality problems and spiraling costs have resulted in widespread interest in solutions that improve the effectiveness and efficiency of the health care system. Care coordination has been identified by the Institute of Medicine as one of the key strategies for potentially accomplishing these improvements. 3 In 2004, in an effort to create mobilization around addressing this strategy, the Technical Assistance Partnership at the American Institutes for Research (TA Partnership), SAMHSA and HRSA convened a working Linking and Aligning meeting in Washington DC by inviting 4 states (MA, WI, SC, and CO) who had successful System of Care and Medical Home initiatives with the following meeting objectives: To promote a dialogue on the integration of children's primary care and behavioral health care; To identify and discuss practical strategies for integrating family centered primary care and behavioral health care at the practice, program, system and private sector levels; To build on States' and communities' experiences to help develop effective strategies for integrating primary and behavioral health in a system of care; and To develop an action plan to integrate the Medical Home and System of Care approach, which may include the development of a demonstration project. A follow up meeting was held in Washington, D.C. in December, 2005 as a continuation of this work with the intention of addressing the following goals: Review and expand on strategies and recommendations identified in the last meeting, addressing infrastructure development, time and financial constraints, cross training for primary care and mental health providers, creation of effective communication systems, and development of supportive and innovative financing systems; Develop a blueprint that will guide implementation of promising strategies in these areas; and Propose recommendations for future activities, including action plans for participating states as well as demonstration projects that will test the feasibility of primary and mental health care integration. Unfortunately, at that time, there were no resources available to continue efforts. METHODOLOGY In October 2007, Project BLOOM (BLOOM) 4 received a supplemental grant from the Substance Abuse and Mental Health Services Administration (SAMHSA) to, in part, continue the Linking 3 McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, et al., June 2007 4 Project BLOOM, a partnership of the Colorado Department of Human Services, Division of Mental Health; JFK Partners at the University of Colorado Denver; the Colorado Children s Campaign; the Colorado Federation of Families for Children s Mental Health; and the four community health centers of Aurora, El Paso County, Mesa County, and Fremont County, is an early childhood system of care. BLOOM's vision is to ensure the mental health and social and emotional well being of Colorado by weaving family centered, culturally competent and community based mental health supports and services into a seamless early childhood system of care that promotes health social emotional development, identifies risk factors, intervenes early, and provides high quality services. BLOOM's focus is primarily on young children, ages 0 5, with serious emotional disturbances, with services provided in El Paso, Fremont, and Mesa counties and the city of Aurora. Their services include training, 5
and Aligning efforts. To meet this objective, BLOOM sponsored four monthly forums between May and August, 2008 to promote dialogue on the integration of children s primary care and behavioral health care; and identify and discuss practical strategies for integrating familycentered primary care and behavioral health care at the practice, program, system and private sector levels. Outreach was conducted to 91 stakeholders across the state. Forty five experts and other stakeholders, including 4 BLOOM staff and 15 panelists, attended the forums with the overall purpose of developing subsections of the care coordination model. The process was guided by a Leadership Committee of eight state and regional level professionals who address care coordination in varying capacities. Each forum focused on the perspective of care coordination from four stakeholder groups: providers, care coordinators, families, and system level agencies. The intended result of the forums was the development of a care coordination model focusing on the integration of behavioral and physical health for children (this document). What follows is a description of care coordination principles, values, a mission and outcomes, followed by the essential qualities of care coordination. Next, this document outlines recommendations for families, providers, and systems level agencies on how to increase the efficiency with which care coordination services are received and provided. Last, recommended next steps for this document are articulated. TARGET AUDIENCE This document is intended for three audiences: (1) Families/consumers of care coordination services; (2) Care coordinators and providers of services 5 ; and (3) Systems level agencies that develop care coordination policies and programs. While each of these groups can use this document to develop an understanding of the different and varied perspectives involved in care coordination, specific uses include: (1) Families/consumers may use this document to understand values and qualities behind care coordination, as well as an educational and advocacy tool when accessing and managing care coordination services; (2) Providers may use this document as a foundation to maximize health care outcomes and use resources efficiently when coordinating care for families; 1 and (3) Systems level professionals may use this document to make decisions about how to coordinate systems level care in a way that minimizes their financial risks and maximizes the care that families receive. 1 CARE COORDINATION: WHAT IT IS AND WHY IT S IMPORTANT A. Overarching Principle integrated delivery of supports and services, statewide working groups that focus on system improvements, and creating sustainable statewide resources for addressing children's mental health. Website: www.projectbloom.org 5 Examples of the types of providers for whom this document would be useful include: mental health specialists, physical therapists, occupational therapists, substance abuse specialists, family physicians, pediatricians, nurses, licensed social workers, as well as care coordinators. 6
It is recognized that care coordination occurs across a continuum; a family s level of participation and intensity of services changes over time and/or with the receipt of services. Thus, the approach by care coordination providers, and the services and activities within the family s care coordination plan should reflect this continuum. B. Values The values underlying the provision of care coordination services are as follows: To provide a team based, partnership approach To make a commitment to provide family centered care To build on the strengths of the family in developing the plan To share pertinent and appropriate information (between all providers and the family) To provide accurate information and information that is understandable to everyone involved in the care coordination plan To utilize culturally competent practices To recognize that families have different levels and types of care coordination needs To match the type of care coordination to the family s needs To recognize that parents are the continuity between, and have the authority of managing the services and supports they receive To involve the family in contributing to the description of specific activities MH C. Mission Forum participants identified the below mission as having elements of both care and coordination: To provide care is to nurture, show concern, advocate, mentor, earn trust, be respectful and be a source of strength. Care coordination is a dynamic process that is value driven and crosses systems. In this process, care coordination providers and agencies should identify and utilize a family s strengths to meet priority needs for optimal well being. Care coordination occurs between the care coordination provider and the family, as well as among providers to create one individualized and shared plan. D. Outcomes According to the Colorado Department of Public Health and Environment s Health Care Program for Children with Special Needs Care Coordination Pilot Project, outcomes of care coordination were identified to: Maintain or improve the health status of children; Reduce Emergency Room visits; Prevent duplication of costly treatments; Prevent treatment delays; Increase family understanding of recommended treatments; MH Medical Home Expectation 7
Increase patient (family) and provider satisfaction; Augment the support for families by utilizing community resources; Ensure long range comprehensive planning; Create independent families; and Encourage families to maintain continuous health care coverage. (CDPHE, 2007) ESSENTIAL QUALITIES OF CARE COORDINATION Forum participants determined that care coordination services is centered on the following five essential qualities: (1) Relationship Building; (2) Culturally Competent Care; (3) Family Focused and Strengths Based Services; (4) Active Interagency Collaboration/Information and Referral; and (5) Process and Outcomes Evaluation. 1. Relationship Building Forum participants prioritized the quality of the relationship between the family and provider(s) as a foundation to providing and receiving effective and efficient care coordination services. A high quality family provider relationship includes the following activities: Developing mutual trust and respect; Maintaining open communication, making it okay to ask questions; Listening for the unasked questions; and Offering anticipatory guidance in a sensitive and thoughtful manner. 2. Culturally Competent Care Working within the culture of the family, as well as between providers cultural systems is essential to providing and receiving effective and efficient care coordination services. This includes the following activities: Providing culturally competent care; Supporting the concept of cultural brokerage (If the care coordinator is not fluent in the language and culture of the family, partner with someone who can understand and interpret these needs.); Interpreting languages across systems; and Building a culture of open communication. 3. Family Focused and Strengths Based Services A family centered approach in which there is a respect and acceptance of family diversity, promotion of the family as a decision maker, and collaboration with professionals and programs that are responsive to family needs is essential. 6 Forum participants prioritized this 6 Jackson, Finkler, Robinson, 1992, p.224 8
concept, recognizing the need to create and coordinate care based on the strengths of the family, and with the family as the center of this process. This concept includes the following activities: Identifying, screening and assessing the needs and strengths of the family, youth and child/ren, recognizing that the levels of which fluctuate over the course of a lifetime; Coordinating a written individualized and shared plan that the family is satisfied with and able to articulate, and make revisions to reflect fluctuations over the lifespan; Providing information and education to the child and family that addresses the concerns and priorities of the family, while also providing anticipatory guidance; Assisting family with transitions (i.e., from early childhood to preschool, provider to provider, child to adult services, community to community, etc.); and Participating in and supporting communication among team members that is familycentered and encourages the family to be a partner in health care decisionmaking MH5. 4. Active Interagency Collaboration/Information and Referral The need to coordinate and collaborate between agencies involved in a family s care coordination includes the following activities: Coordinating a written individualized and shared plan that the family is satisfied with and able to articulate, and collaborate with all providers to make revisions that reflect fluctuations in child/youth s lifetime; Collaborating with all providers to continuously monitor the outcomes of the plan; Identifying, navigating and making referrals to appropriate services and supports; Participating in and supporting a system for children and families to obtain information and referrals about insurance, community resources, non medical services, education and transition to adult providers MH4 ; Participating in and supporting communication among team members that is familycentered and encourages the family to be a partner in health care decisionmaking MH5 ; Navigating through and collaborating across systems, and contributing to joint planning; Providing outreach services; Disseminating and sharing useful information and linking resources; and Working on a continuum of coordination from basic referral to high fidelity wraparound system of care. 5. Process and Outcomes Evaluation The need for ongoing evaluation of care coordination services includes the following activities: Using institutionalized processes and tools that result in documentation of outcomes of care coordination for families and situations where outcomes did not occur; Monitoring the outcomes of the plan on a continual basis; Providing families desired information in a format accessible to them; and Using data to improve and/or sustain services. MH4 Adapted from Medical Home Standard #4: Information and Referral, Education System MH5 Adapted from Medical Home Standard #5 9
GENERAL RECOMMENDATIONS The following recommendations apply to all three target audiences: families/consumers, providers, and system level agencies. 1. Promote and have access to a client centered electronic personal health record for improving care coordination and allowing 24/7 access to information; 2. Universal health care that covers all health (oral, behavioral, mental, and physical) and covers long term care; 3. The Colorado Medical Home Standards (Appendix 1) and the System of Care Values and Guiding Principles (Appendix 2) are applied and prioritized throughout the provision and receipt of care coordination services; 4. Adopt a no wrong door process by which families and consumers access care coordination services; Graphic 1.1 Plan of care Health care services rendered Referrals ENTER (No wrong door) 5. Identify and participate in the development of outcomes and support the monitoring and evaluation of these outcomes; 6. Utilize and be the recipient of culturally competent practices; and 7. Engage in continued multi disciplinary system assessment in order to identify unmet needs. RECOMMENDATIONS: FAMILIES/CONSUMERS 1. Advocate for your child by making your child s and your family s need known to providers; 2. Help facilitate and encourage communication between your child s and family s providers; 3. Participate in the development of individualized planning and role definition among providers; 4. Maintain comprehensive records of child s provider contact information and services received; 5. Seek support from other families with children with special health care needs; and 6. Participate in family education services. RECOMMENDATIONS: PROVIDERS 1. Form a partnership with families and commit to providing family centered care; 2. Provide ongoing communication with families about their children s care; 3. Discuss provider and family expectations with families; 4. Provide child and family education around care coordination services; 10
5. Help families access the tools and resources necessary for them to maintain comprehensive records of their child s providers and services received; 6. Complete a thorough and individualized assessment for each family, while providing a continual assessment of a family s top priorities when assisting them with system navigation; 7. Monitor the accomplishments of child and family outcomes and partnerships with families; 8. Include in the individualized child and family plan an outline of the roles and expectations of providers; 9. Assist families with transitions (i.e., early childhood to preschool, child to adult services, provider to provider, etc.); 10. Identify appropriate resources and make referrals; 11. Form a partnership and collaborate with other providers; and 12. Be aware of all the services the family is receiving in order to ensure effectiveness and avoid duplication. RECOMMENDATIONS: SYSTEM LEVEL AGENCIES 1. Develop a template that articulates the range of expectations and roles for different providers in order to build infrastructure and increase the opportunity for data collection; 2. Develop core competencies and expectations for care coordination providers; 3. Provide core training for professionals and families to include the following: a. Overview of key systems and services, including specific government programs (e.g., HCP, WIC, EPSDT, Prenatal Plus, CHP+, etc.); b. Relationship building skills; c. Cultural competency; and d. Overview of the quality of life for those living with disabilities. 4. Establish communication pathways for coordination among education, and health and behavioral health systems; 5. Support all elements of service delivery; 6. Develop processes whereby the evaluation of outcomes and quality can be established; 7. Create standards that allow for flexibility in the implementation of care coordination consistent with local resources and values; 8. Share accountability across agencies and pursue increased funding; 9. Prioritize funding for research; 10. Review of Request For Proposals for child and youth programming to determine possibilities of streamlining resources; and 11. Develop a process for information sharing across systems. RECOMMENDED NEXT STEPS Determined by participants at the fourth forum and by Leadership Committee members, the following action items were recommended for continuing Linking and Aligning efforts in Colorado. The next steps fall into two categories, revisions and modifications to the document itself, and action items for furthering the goals of Linking and Aligning. Overall, it was 11
determined that interagency collaboration should be a priority when considering these next steps. Next Steps for this Document Develop a comprehensive toolkit by identifying resources for: (1) Assessments (e.g., wraparound, quality assurance, sharing of information, etc.); (2) Quality Assurance; (3) Permission for Information Sharing; and (4) the Plan. 7 Solicit feedback on the document from Family Leadership participants. Develop this document into a legislative brief to be shared with legislative committees (e.g., Colorado Mental Health and Advisory Council, 1391: Child Welfare System) with the intention of piloting the document s concepts within a specific population/county. Next Steps for Linking and Aligning Collaborate with system level agencies that are charged with care coordination, including Part C, EPSDT, Mental Health, and Developmental Disabilities. Collaborate with 1451 and the Prevention Leadership Committee to present this document in a meeting with 8 state departments in October, 2008. Collaborate with 1451 to secure funds that support the articulation of what it means to be a care coordinator. Conduct outreach with the intention of getting endorsement of the concepts from different groups already involved in care coordination efforts. Develop a pilot project with a county partner. The purpose of the pilot would be to demonstrate the result of putting these care coordination concepts into practice. (This project could possibly be supported by TANF reserve funds through the Department of Human Services.) Use the document to educate providers to promote interdisciplinary collaboration with the purpose of increasing efficiency via the following networks: o AAP o Child and Adolescent Psychiatry o Medical Homes for Children, including the CO Medical Home Initiative o CO System of Care Collaborative o State Council on Social Work o Colorado Behavioral Health Council o Community Colleges: Bring curriculum for workforce development. The current qualifications differ by discipline. Conduct focus groups with providers to get feedback on whether these concepts are feasible. REFERENCES Health Care Program for Children with Special Needs, Colorado Department of Public Health and Environment. HCP Care Coordination Summary 1999 2007 DRAFT. 2007 7 Placeholders for these additions are included at the end of this document. 12
Jackson, B., Finkler, D., Robinson, C. (1992). A case management system for infants with chronic illnesses and developmental disabilities. Children s Health Care, 21(4), 224 231. McDonald KM, Sundaram V, Bravata DM, Lewis R, Lin N, Kraft S, McKinnon M, Paguntalan H, Owens DK. Care Coordination. Vol 7 of: Shojania KG, McDonald KM, Wachter RM, Owens DK, editors. Closing the Quality Gap: A Critical Analysis of Quality Improvement Strategies. Technical Review 9 (Prepared by the Stanford University UCSF Evidence based Practice Center under contract 290 02 0017). AHRQ Publication No. 04(07) 0051 7. Rockville, MD: Agency for Healthcare Research and Quality. June 2007. 13
APPENDICES 1. Colorado Medical Home Standards 2. System of Care Values and Guiding Principles 3. Toolkit Resources (Placeholder to be developed by the Linking and Aligning Project Development Committee) a. Assessments b. Quality Assurance c. Permission for Information Sharing d. The Plan 14