2017 Alliance for Innovation on Maternal and Child Health: Kentucky Case Study

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1 2017 Alliance for Innovation on Maternal and Child Health: Kentucky Case Study

2 In 2014, the Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB) funded the Alliance for Innovation on Maternal and Child Health: Expanding Access to Care for the Maternal and Child Health Population (AIM) to encourage the development of collaborative partnerships and implementation of strategies to address health care access and quality of care for maternal and child health (MCH) populations. Six national organizations are working collectively to engage states and raise awareness of best practices in the following AIM focus areas: Ensuring continuity of coverage and care for pregnant women and children Improving systems of care for children and youth with special health care needs (CYSHCN) Promoting the use of Bright Futures guidelines The Kentucky state team, which comprised key health policymakers and legislators led by the Commission for Children with Special Health Care Needs, participated in Round 1 of the AIM Learning Collaborative in Drawing from the state s most recent Title V needs assessment, the team identified three main goals for their AIM project: 1. Support data-driven decision making statewide 2. Increase access to care for women and children, including CYSHCN 3. Ensure adequate insurance coverage for prevention and care that produces long-term cost savings The primary strategies to address these goals included: Convening a Data Advisory Council, and developing and implementing a plan to access and analyze key data sources Convening the Kentucky Summit on Access to Care for CYSHCN, an event attended by 89 participants that featured remarks by Matthew G. Bevin, the new governor, and several sessions related to various aspects of CYSHCN experiences Adopting the Got Transition tools to ensure the state was conforming to the national standard of transitioning CYSHCN from pediatric care to adult care for by age 21 Participants identified a number of lessons learned, including: Get the right partners to the table and nurture those relationships Be patient when addressing barriers related to sharing and analyzing state- and locallevel data Raise project visibility and increase partnerships throughhigh-profile event Link project outcomes to larger state goals for sustainability Be flexible in working with partners challenges to maintain participation Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 1

3 Background In 2014, the HRSA s Maternal and Child Health Bureau (MCHB) funded AIM to encourage the development of collaborative partnerships and implementation of strategies to address health care access and quality of care for maternal and child health (MCH) populations. Six national organizations: American Academy of Pediatrics (AAP); Association of Maternal and Child Health Programs (AMCHP); Association of State and Territorial Health Officials (ASTHO); National Academy for State Health Policy (NASHP); National Conference of State Legislatures (NCSL); and National Governors Association (NGA) are working collectively to engage states and raise awareness of best practices in the following AIM focus areas: ensuring continuity of coverage and care for pregnant women and children; improving systems of care for children and youth with special health care needs (CYSHCN); and promoting the use of Bright Futures guidelines. ROUND California Kentucky Nevada Pennsylvania Rhode Island ROUND American Samoa Colorado Minnesota Montana North Dakota South Dakota Utah Wyoming State Learning Collaboratives The primary activity of the AIM national partners has been to plan and support the AIM Learning Collaboratives, convening three rounds of state teams from 2015 to 2018 (states shown in the callout box). State team membership consisted of key health policymakers and state legislators. Each round of the AIM Collaborative began by convening the state teams for an in-person kickoff meeting, during which experts presented best practices and promising policy solutions related to the AIM focus areas. State teams also had the opportunity to discuss and identify MCH priorities during facilitated individual state team meetings. During the kickoff meeting, state teams made progress in developing a draft action plan that included goals, targets, concrete strategies, and specific action steps for their projects, which was finalized when they returned to their states. ROUND Arkansas Georgia Maryland Mississippi Tennessee Texas Virginia West Virginia Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 2

4 Technical Assistance to States Following the kickoff meeting, an AIM national partner worked closely with each of the state teams and provided technical assistance (TA) through regular conference calls, s, and an in-person state meeting, when requested. NGA provided most of the TA for the Round 1 states and awardees; AAP, AMCHP, ASTHO, NCSL, and NGA provided TA to Round 2 and 3 states. Kentucky State Team This case study features the implementation and lessons learned by the Kentucky state team, which participated during the Round 1 AIM Learning Collaborative in The initial Kentucky team that attended the kickoff meeting comprised representatives from the Department for Medicaid Services, Commission for Children with Special Health Care Needs (the Commission), Department for Public Health, and State legislators. The team drew from Kentucky s most recent Title V needs assessment to identify focus areas for their collaborative work. The needs assessment pointed to: Access to care Insurance coverage Transition as key barriers for Kentucky s CYSHCN population. The assessment also highlighted the need for better data to inform future planning decisions related to CYSHCN. Because the team s goals focused specifically on CYSHCN, the Kentucky Commission for Children with Special Health Care Needs (the Commission) became the lead organization for implementation efforts. KENTUCKY GOAL1 Support data-driven decision making statewide. KENTUCKY GOAL2 Increase access to care for women and children, including CYSHCN populations. IMPLEMENTATION OF KENTUCKY ACTION PLAN Once the team finalized their AIM Collaborative action plan, they began implementing their identified strategies to address Goals 1 and 2, discussed next. Because goals were prioritized based on the Commission s ability to put solutions into action, time did not permit implementation of the planned activities identified under Goal 3. GOAL 1: Support Data-Driven Decision Making Statewide Making data-driven decisions had become a greater priority across Kentucky state agencies. Through their Title V needs assessment, the team recognized that they did not have adequate data describing the CYSHCN population, due to lack of collection and/or challenges in accessing the data. Without a staff epidemiologist or statistician, the Commission had limited capacity to collect and analyze data. They had relied historically on data collected through national surveys, but these were less useful because data were in aggregate form and could not be analyzed at the regional or county level, which would allow the Commission to identify service gaps. Hoping to address these data challenges, the team decided to use AIM to improve access to useful data and KENTUCKY GOAL3 Ensure adequate insurance coverage for prevention and care that produces long-term cost savings. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 3

5 to draw from the data expertise of other state agencies and partners to form a Data Advisory Council. Before convening the Data Advisory Council, Commission staff reviewed Title V block grants for the few states that had included a performance measure focused on improving data. They also sought support from the MCHB Center of Excellence in MCH Education, Science and Practice based at the University of Alabama at Birmingham (UAB) to help plan the Council and facilitate an initial Council meeting. In preparing for the Council meeting, Commission staff held several planning calls with UAB to determine the meeting structure and identify the most useful potential data sources and stakeholders that should be included. After identifying the most useful data and the agencies with access to it, the Council issued invitations to agency representatives with authority to grant such access. Convening the Data Advisory Council The Council was convened for a full-day meeting with UAB as a facilitator. Key informants agreed that Council members represented a diverse group, with varied perspectives that contributed to a rich discussion. Participants included: Commission for Children with Special Health Care Needs Department for Medicaid Services Department for Public Health Office of Health Policy, Family-to-Family University of Louisville (UofL) University of Kentucky schools of public health The morning was used to identify, review, and prioritize available data sources. Participants selected the following criteria to assess each data source: Importance the extent to which the data source can improve understanding of the Commission s needs or impact decision making Feasibility the likelihood of obtaining the data, and the willingness of the agency to share data Resources the Commission s available resources and its readiness to use the data Having identified 10 potential data sources, UAB facilitated a discussion during which participants reviewed these three criteria for each data source. Each participant rated the data sources, which were then tabulated to prioritize five data sources: It was one of those takeaways that you didn t exactly anticipate and would be hard pressed to capture through a number. That positive building of good will and momentum towards doing this work was clearly evident around the room, and at the end of the day. Data Advisory Council participant Commission data Family-to-Family Birth surveillance Medicaid Health policy Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 4

6 In the afternoon session, participants broke into subgroups tasked with developing a plan to access each source. After the meeting, the Commission reviewed and edited the plans before sending them to participants. Participants left the meeting committed to providing access to the requested data. Once finalized, the data plan was incorporated into the Title V block grant as one of the state s performance measures. After the meeting, Memorandums of Understanding (MOUs) were put in place with several agencies, such as Medicaid and Public Health, to facilitate the data-sharing process. An MOU for data analysis was also established with UofL faculty. The Commission has worked with the lead at each agency to gain access to the data and is coordinating with UofL to analyze data, including hospital discharge data and Medicaid claims data. In addition to these data sources, the Commission is also fielding their own survey with families of CYSHCN, in the hope that analyzing these collective data sources would help them better describe the health status of the CYSHCN population in the state and identify service gaps. KENTUCKY AIM OUTCOMES Convened Data Advisory Council that developed data plan Incorporated data plan into Title V block grant as one of the state performance measures Established MOUs with state agencies and partners to facilitate data sharing and analysis Adopted Got Transition snapshot and process-measurement tools at the state level to ensure Kentucky conforms with the MCH National Performance Measure, and provide a way to measure the provision of transition services statewide Convened successful 89-person summit on CYSHCN with a proclamation from the governor, a legislators panel, and presentations from multiple stakeholders, which raised the Commission s profile Established new partnerships and strengthened relationships with state agencies and other partners Improved referral systems in place for CYSHCN Improved future collaboration and coordination among agencies on other state projects and initiatives Increased visibility of the Commission and other partners (e.g., Family-to-Family) serving the CYSHCN population Participants described a positive experience that included thoughtful conversations. Even though participating agencies and organizations had existing relationships, the experience of convening around a shared purpose strengthened those connections. After the meeting, participants described further collaborations that likely would not have taken place before. For example, the Commission and the Department for Public Health are now working together to improve services for infants and CYSHCN identified through the state birth-surveillance registry. A new MOU is allowing for data sharing and referrals so that families can be offered services once eligible children are identified. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 5

7 Supports and Challenges AIM provided the impetus for convening the Council. Some of the Council members were part of the Kentucky team that attended the Learning Collaborative kickoff meeting and benefited from the information presented there. Having support from decision makers and leadership within the Commission and participating organizations was imperative to getting the right people at the Council, putting MOUs in place, and accessing data. This same support was also critical to enhancing the capacity of the Kentucky team. The largest barriers identified after the meeting were related to accessing data. The Commission acknowledged having limited data capacity and needing to rely on partners for data analysis. Accessing data has also been more challenging than expected. It took time for the MOUs to undergo administrative and legal reviews and for some data requests to be completed. GOAL 2: Increase Access to Care for Women and Children, Including CYSHCN Populations A second priority was to increase access to care for women and children, with a focus on CYSHCN, through two main activities: convening a Summit on Access to Care for CYSHCN and adopting the Got Transition Tools. Convening the Kentucky Summit on Access to Care for CYSHCN On May 25, 2016, the Kentucky team convened the Kentucky Summit on Access to Care for CYSHCN with 89 participants. A wide variety of stakeholders attended, including: Providers and families Representatives of Insurance agencies Foster care Medicaid Department for Public Health Behavioral health Telehealth MCH partner organizations Attendees were more than just the usual suspects the representatives from behavioral health and telehealth were new partners. We all are under the same cabinet, the Cabinet for Health and Family Services, but we re different agencies and sometimes we tend to work in silos. For all of us to come together was a great experience. For them to come and support us was a great experience for us. Kentucky state team member The governor of Kentucky, newly sworn-in Matthew G. Bevin, gave a welcome talk and issued an official proclamation declaring the day the Children and Youth with Special Health Care Needs Awareness Day (Proclamation on page 12). Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 6

8 Presentations included: Discussion of the role of the Commission for Children with Special Health Care Needs Title V, and National and State Performance Measures Telehealth in Kentucky The Importance of Family Engagement: A Personal Story Access to Care for CYSHCN: A National Perspective Kentucky Medicaid and Access to Care Behavioral Health Access to Care in Kentucky Adverse Childhood Experiences: Impact in Kentucky Legislative panel This was the first time in over ten years that a meeting of this size focused on CYSHCN had been held by the Commission. They were initially skeptical it would generate enough attention, but found themselves having to cut off registration because it was so popular. Participants were interested in learning about the CYSHCN population, particularly during the family engagement presentation given by one of the state team s partners: Family-to-Family, a family-staffed health information center that provides support to families of individuals with special needs. This session was well received, and feedback from families and providers in attendance showed that the family perspective had been lacking in state-level discussions. The Kentucky team received suggestions that this type of meeting should be held annually to educate pediatric providers on CYSHCN. Adopting the Got Transition Tools The second strategy was to develop evidence-supported strategies to ensure a smooth transition from pediatric care to adult care for CYSHCN by age 21, an MCH National Performance Measure (NPM). 1 The evolution of this NPM was a driver of this goal, as the team wanted to ensure the state was conforming to the national standard, so the strategy incorporated the six core elements 2 of the measure into their planning. Transition involves a full range of services that can include: We were just doing a family perspective of services, our own stories, of our own children and their disabilities... I don t think providers had a very clear picture of what a family s life looks like, [those] experiences and all the different variables that we work with, I think that helped them understand a little bit better. Kentucky Summit on Access to Care for CYSHCN presenter Finding a new primary care provider Learning life skills Educational support Vocational rehab Employment assistance Housing Guardianship Wills or trusts Other services the individual may need Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 7

9 Transition tools used with families are organized by age group and are used to facilitate age-appropriate conversations based on the anticipated needs of the child or adult. Initially, the Kentucky team wanted each region in the state to develop a separate transition plan, but it realized the plans would likely look very similar. One of the national AIM partners recommended that the organization Got Transition and the transition tools available through their website might be helpful to Kentucky. These tools were compatible with the NPM goals and were easy to integrate into Kentucky s Title V block grant goals. 3 The team formalized Got Transition s quality improvement score sheets into their state performance measure on access to care, and will track their efforts to improve the six different transition elements. The Got Transition staff provided the Kentucky team with some TA to ensure the tool was being used correctly in the state, but thus far, Kentucky has had no implementation issues. Supports and Challenges This section reviews the factors that supported and challenged the Kentucky team s ability to implement their action plan. One major challenge for the Summit was the complexity involved in organizing and convening a meeting with nearly 90 participants. However, the AIM national partners provided TA and helped ensure the right participants attended. NGA was able to bring Governor Bevin to the table, and NCSL coordinated the legislative panel. Debra Waldron, the thendirector of the Division of Services for Children with Special Health Needs at MCHB, provided the national perspective at the Summit. NGA also provided logistical support, including suggestions about how to run the event, which the Kentucky team considered critical pieces of TA. According to key informants, having the new governor in attendance was a major win for several reasons. 1. First, having Governor Bevin there was important for showing support and reassuring people during the gubernatorial transition. 2. Second, the governor s participation helped the Commission and the Summit attract press coverage. For example, Governor Bevin posted a video from the Summit to his Facebook page, which got more views than the Commission has followers on Facebook. 3. Third, the governor attracted participants to the Summit, as stakeholders were curious to see what the new governor would say. The Summit also had a Cabinet secretary and deputy secretary in attendance. Having top leadership there was important because it was an opportunity for them to learn about the Commission s work and the services available for CYSHCN statewide. 3 Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 8

10 LESSONS LEARNED Get the right partners to the table and develop those relationships. Getting the right partners for both the Summit and the Data Advisory Council was the most critical step for this project s success. As noted, NCSL and NGA were vital to bringing Governor Bevin and state legislators to the Summit. The governor s participation was a draw to other stakeholders, and the legislators were able to give their perspective on CYSHCN and hear input from other stakeholders on the importance of access to care for this population. When convening the Data Advisory Council, the Commission deliberately selected agency representatives including gatekeeper decision makers and data analysts to shepherd the MOU process. The team also benefited from engaging academic partners at UAB and UofL to facilitate and provide data analysis support. Be patient when addressing barriers to sharing and analyzing state- and local-level data. After the Data Advisory Council meeting, the Commission assumed the lead role in coordinating access to the identified data sources and worked closely with each agency lead. The route to accessing data turned out to be more challenging than expected and required persistence. Although all parties were open to establishing MOUs, the approval and review process took much longer than expected; some agencies required many follow-up discussions to refine data requests and ensure the Commission was receiving the data that would be most useful. A high-profile event and project can increase partnerships and raise the visibility of a low-profile agency. The Commission is a relatively small organization in the same cabinet as the much-larger Medicaid and Behavioral Health divisions, and has often been overlooked as a policy stakeholder. This project, particularly the Summit, enhanced its visibility and helped other Kentucky stakeholders understand what they do. The Commission felt they had important information to share, based on the Title V needs assessment and AIM processes, regarding identified needs, priorities, and a strategic approach. The Summit provided an opportunity to educate people and increase awareness of the Commission and the issues facing CYSHCN and their families. The Commission now has new contacts in the state that grew out of the Summit and the Data Advisory Council, including strengthened relationships between the Commission and the Department of Public Health. Although the two departments have worked together for years, participation in AIM led to partnering with Public Health on other activities such as the development of a maternal registry and a follow-up system for Zika-exposed infants. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 9

11 Link project outcomes to larger state goals for sustainability. For both goals implemented under this project, the Kentucky team linked their project outcomes to larger state goals featured in the state s MCH block grant. The Kentucky team started with the state s Title V priorities to set their goals for this project. The team formalized Got Transition s quality improvement score sheets into their state performance measure on access to care and will track their efforts to improve the six different transition elements. Similarly, the team used their data action plan to develop the elements of their state performance measure for data. Using the Title V block grant measures and the state performance measures institutionalizes the AIM goals into a larger state plan, ensuring these goals are revisited each year and that the Commission is held accountable to block grant officers. Team leaders need to be flexible and work with partners challenges to maintain participation. Having a core team that is responsible for setting up meetings, tracking goals, and other managerial functions is important, as not all partners will have the ability to participate at this level. Kentucky state team members acknowledged the importance of the Commission in managing the project: I think for the most part the Commission did a really good job of kind of holding everything together. I know I haven t been able to attend every single meeting, that s what happens, but I think they ve done a good job and I think they were the right people to be the core of the project. For example, the Kentucky team appreciated that the legislators participated at the kickoff and Summit but acknowledged that deeper participation in the AIM project was difficult for this group. However, having the legislators input was valuable, and the connections made were important to work going forward. State-level departments like the Commission have to present their budget to the legislators every two years; now that team members have worked with these same legislators, they are no longer strangers. Other barriers included time management, dealing with competing priorities for team members whose calendars fill up months in advance, and holding meetings with team membership split between Frankfort and Louisville. Meeting in person was mostly prohibitive due to a lack of time for driving between the two cities, and remote members found it difficult to participate in group discussions via phone. Monthly calls and meeting planning from AIM partners can facilitate state-level implementation. In addition to the TA provided specifically for the Summit and Data Advisory Council, the AIM national partners provided a structure that helped facilitate implementation. Kentucky team members agreed that the monthly TA calls were helpful in keeping the project on track. In addition, the overall structure of the AIM project, including the in-person kickoff meeting, facilitated collaboration. As one participant noted, I thought it went really smooth, I thought it was good, everybody s ideas were heard, I don t think anyone s ideas were rejected, it was very collaborative how I viewed it, it helped enhance relationships that were already in place. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 10

12 FUTURE PLANS Ongoing work on the Data Action Plan. The Kentucky team will continue to implement the Data Action Plan. Future data work might include determining the proportion of CYSHCN the Commission is actually serving. The Department of Public Health plans to continue involvement with the Data Advisory Council and mentoring of interns from the Graduate Student Epidemiology Program. Ongoing work on transition care. The Kentucky team will continue to use the Got Transition tools and track progress in access to transition care. Future work under Goal 3. The Commission will continue to work toward educating families of CYSHCN about coverage options and to ensure that the agency partners with Medicaid to represent the needs of CYSHCN. As of this spring, the Commission has convened a team including Medicaid and managed care organizations, with the goal of innovating the systems of care for children with complex medical conditions, who experience a disproportionate share of medical expenditures. Potential work on adverse childhood experiences. The Commission is interested in exploring in-clinic screening for adverse childhood experiences. Further work with new partners. The Commission is hoping to work more closely with managed care and Medicaid to grow relationships established at the Summit, particularly on case management and care coordination to ensure that services are not duplicated, and to streamline reimbursements for children who are seen by multiple providers in a single clinic visit. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 11

13 Select Proclamation image to return to the report. Alliance for Innovation on Maternal and Child Health: Kentucky Case Study 12

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