Appendix: Profiles of the CHIPRA Quality Demonstration States’ Stakeholder Engagement Initiatives
Implementation Guide Number 1
Georgia: Engaging Stakeholders To Develop Curricula for Caregiver and Youth Peer Specialists
Georgia is building a statewide network of certified peer specialists (CPS) who have “lived experience” in the behavioral health system. These CPS will become paraprofessionals in the child behavioral health workforce. A critical component of building this network is developing curricula and certification processes for caregiver and youth CPS. In addition to working with a broad array of child-serving State agencies, Georgia has formed stakeholder groups of caregivers and youth to specifically guide the development of the curricula from the beginning of the CHIPRA Quality Demonstration Grant Program. Although both the caregiver and youth stakeholder groups were established as temporary groups specifically dedicated to developing CPS curricula, CHIPRA quality demonstration staff envision ongoing involvement from these stakeholders as they become certified and join the workforce and as the Department of Behavioral Health and Developmental Disabilities (DBHDD) develops additional ways to keep caregivers and youth involved.
To help develop the caregiver CPS curriculum, CHIPRA quality demonstration staff built a 45-member group consisting of caregiver leaders, including biological, foster, and adoptive parents, as well as family advocates. These caregivers were identified because they worked on prior and existing initiatives within the DBHDD, are currently working with care management entities as peer specialists, and are caregivers of children receiving behavioral health or addiction services in community-based programs. They also intentionally included leaders from local, statewide, and national chapters of family support organizations, such as the Federation of Families. They also created a stakeholder group composed of youth and young adults aged 15 – 26 who have received services from the Community-Based Alternatives for Youth demonstration grant, Healthy Transitions Initiative grant, Substance Abuse and Mental Health Clubhouses, Federation of Families Youth Moves chapters, and other youth with lived experience in the behavioral health system. The size of this group fluctuates between 15 and 30 individuals as members age out, move away to school, take a voluntary and temporary break for health reasons, or move on to other responsibilities.
A family and youth peer specialist coordinator, who is also a parent of a child with experience in the behavioral health system, facilitates the work of these two groups, which are housed in the Georgia DBHDD. To conduct their work, each group meets separately once a month for a full day. Meetings are structured and include training, education, team-building activities, and full-group and smaller-group sessions. The facilitator ensures that all stakeholders have an opportunity to talk during meetings and that they are given “homework” at the end of each meeting to prepare them for active participation and critical thinking in subsequent sessions.
Early training for caregivers included a presentation by the Georgia adult CPS project director, which provided the necessary background for caregivers’ development and implementation of the curriculum and certification process, as well as training on recognizing the signs of trauma. CHIPRA quality demonstration staff also created tools to support caregivers’ meaningful engagement in the development of the curriculum. For example, staff from the Center for Health Care Strategies, which is assisting Georgia, conducted research on existing peer support models used in other States, as well as on the Federation of Families’ core competencies for peer specialists, and then mapped stakeholder caregivers’ own beliefs about and priorities for peer support to that content. This mapping was shared with caregivers to generate discussion and collaboratively identify the key responsibilities for peer specialists. CHIPRA quality demonstration staff then brought in a curriculum expert to facilitate a series of meetings with caregivers to (1) flesh out the specific training CPS would need to fulfill those responsibilities and (2) write the curriculum based on input from caregivers. The expert is continuing to work with the caregiver stakeholders to revise the curriculum following the first few caregiver CPS trainings.
Youth group members are preparing to develop the youth CPS curriculum once the caregiver curriculum is complete. In addition to education about mental illness, the behavioral health system, and the adult peer support program, youth stakeholders also learn how to prioritize and receive support for their own wellness and recovery. “There is a nurturing that has to happen [with youth]. We have to do a lot of self-exploration with them while also considering elements of the curriculum development. We have to make sure they have a sense of self-awareness to figure out what they need before they can be good peer support to other young people,” said one CHIPRA quality demonstration staff member. DBHDD staff, including the facilitator, are available during youth group meetings to provide the emotional support group members may need, as are the youth’s caregivers. Youth receive a stipend to support their participation and meet at a conference center in a local theme park.
As part of the stakeholder engagement process, Georgia CHIPRA quality demonstration staff are committed to building caregivers’ and youth’s leadership and advocacy skills. For example, they are supporting caregiver stakeholders in starting their own Federation of Families chapters by paying their membership fees and providing training on how to build and sustain a chapter. Georgia also has used CHIPRA quality demonstration funds to support parents and youth in attending the Annual Federation of Families national conference each year since the beginning of the CHIPRA quality demonstration. These parents and youth have reported back to others in the groups and have used what they have learned to inform the content of the CPS curricula.
Idaho: Developing an Improvement Partnership To Enhance the Delivery of Children’s Health Care
Idaho is building, from the ground up, a statewide Improvement Partnership (IP) entitled the Idaho Health and Wellness Collaborative for Children (IHAWCC). An IP is a durable collaboration of public and private partners that uses measurement-based efforts and a systems-level approach to improve the quality of children’s health care. A core component of IHAWCC’s work is to host learning collaboratives (LCs) that guide, assist, and support child health providers in practice-based efforts to improve the quality of children’s health care. Idaho’s grant partner in the CHIPRA quality demonstration, Utah, with its established Utah Pediatric Partnership to Improve Healthcare Quality, is mentoring Idaho as they establish IHAWCC. Once the Idaho IP is established, the two States plan to work together as a regional network to develop cross-State quality improvement activities.
Unlike other IPs, Idaho’s IP began offering LCs for providers before establishing its organizational structure. This was an intentional strategy to build stakeholder support by demonstrating the benefits IHAWCC could bring to children’s health care. As one CHIPRA quality demonstration staff member said, “We are trying to show the [stakeholders] proof of concept through the learning collaboratives. We wanted to get people familiar with the IP concept, and we wanted to do a learning collaborative first.” He continued, “We started with the concept and worked to get those key stakeholders involved, while most IPs start the other way.”
While developing and conducting LCs, Idaho CHIPRA quality demonstration staff began identifying stakeholders who could provide input on the structure and function of the nascent IP and assist in its development. The medical director and project coordinator of Idaho’s CHIPRA quality demonstration worked with Utah’s medical director and staff to brainstorm the key players in children’s health care who would be important to convene at a kickoff meeting. They also used the National Improvement Partnership Network’s (NIPN) manual on developing IPs as a guide.
Early in the process, Idaho, with support from Utah and NIPN, hosted a 2-day meeting for potential stakeholders focused on the function of IPs and roles that stakeholders could play. Leaders from NIPN presented on the achievements of other State IPs and consulted with attendees. After the kickoff meeting and a number of subsequent one-on-one meetings with potential stakeholders, a variety of individuals committed to participating and formed the IHAWCC advisory board. In discussing this meeting, a CHIPRA quality demonstration staff member said, “Education on current grant activities and what an IP can do was the key to having [stakeholder] members commit.”
The 12-member advisory board includes a core set of stakeholders from the Idaho chapter of the American Academy of Pediatrics, the local health system (St. Luke’s Children’s Hospital), the State’s Medicaid program and Division of Public Health, the Idaho chapter of the American Academy of Family Physicians, and Boise State University. CHIPRA quality demonstration staff also intentionally included pediatrician, family physician, and nurse practitioner voices in their stakeholder group.
One of IHAWCC’s early accomplishments was securing St. Luke’s Children’s Hospital as their institutional home. The hospital provides administrative support and limited funding. The advisory board also brainstormed and selected the name for the IP and then began foundational activities, including development of a Web site and vision and mission statements to inform and engage additional stakeholders. The group meets monthly to provide strategic direction as they continue to formalize the IP, identify priority topics for IHAWCC’s LCs, and plan for sustainability. CHIPRA quality demonstration staff maintain active engagement of stakeholders by scheduling meetings at consistent times and well in advance, sending agenda items and materials before meetings, and being respectful of stakeholders’ time. They also intentionally use stakeholders in the capacities in which they have expertise and personal interest, instead of having all stakeholders involved in all aspects of the work. For example, the stakeholder from Boise State University is assisting with achieving Institutional Review Board approval for an upcoming LC, but a different stakeholder is better suited to helping with Web site development.
Massachusetts: Creating a Statewide Coalition To Improve Child Health Quality
Massachusetts is using CHIPRA quality demonstration funds to build the Massachusetts Child Health Quality Coalition, a statewide, multi-stakeholder coalition to lead transformational quality improvements in children’s health care and sustain that focus beyond the life of the CHIPRA quality demonstration. The coalition, with its nearly 60 members, serves as a vehicle for creating a shared understanding of priorities in child health care quality and as a platform for formulating and implementing a multi-year plan for improving health care services and care outcomes for children in Massachusetts. The coalition promotes child health care quality through a number of activities, including directing and participating in an assessment of the current status of health care quality in the State, identifying gaps in children’s health care services and measures, providing guidance on the development of new measures to evaluate and track progress in areas related to children’s health care, and advocating for the inclusion of children’s health issues in broader statewide activities.
Massachusetts began by developing a sustainable and functional model for the coalition with a governing body, defined roles for oversight, and created operational structures to support the coalition in developing objectives and executing action plans. With this model in place, the CHIPRA quality demonstration team defined a member recruitment strategy to ensure diverse and comprehensive representation across the organizations related to child health care in the State. Coalition members include primary care and specialist providers, families and consumer advocacy organization representatives, health plans, health professional groups, school nurse professional groups, State and local agencies, community organizations, hospitals, and policy experts.
The coalition includes an executive committee and multiple workgroups. The full coalition meets quarterly, as does the executive committee, while the smaller workgroups meet more regularly and complete much of their work via electronic communication. A gap analysis, conducted by the CHIPRA quality demonstration staff and a workgroup from the coalition, incorporated qualitative and quantitative data, an environmental scan of other activities in the State, and input from coalition members. The findings from this analysis laid the foundation for the development of the coalition’s action agenda and the workgroups’ priority areas of focus. Each of these groups has a clearly identified product that they are aiming to produce and is supported by a CHIPRA quality demonstration staff member.
CHIPRA quality demonstration staff keep coalition members actively engaged by maintaining a regular and routine meeting schedule and working hard between meetings to gather and synthesize information the workgroups need to move their deliverables forward. Providing timely and continued creation of concrete products and outputs has been instrumental in maintaining engaged stakeholders. These products and outputs include the gap analysis, a key elements framework for care coordination, a communication guide, definition of a set of potential new measures, and support of medical home spread.
CHIPRA quality demonstration staff are implementing a coalition effectiveness survey with coalition members to assess the coalition’s communication mechanisms, the adequacy of supports provided, and the benefits of participation to members. The survey has been administered at baseline and midpoint of the grant, and staff have used this input for formative improvements to the coalition structure and approaches to engaging and working with members. The survey will be administered one more time during the grant-funded period.