The 2020 MCH Needs Assessment identified the Priority Need Enhance Identification, Access, and Support for Individuals with Special Health Care Needs and their Families. This is the first time persons with special needs and their families have been identified as a specific Title V Priority Need.

The Title V Program will support the Wisconsin Medical Home Initiative at the Children’s Health Alliance of Wisconsin and the Youth Health Transition Initiative at the UW-Waisman Center to serve as leads for this work. Family Voices of Wisconsin will lead family engagement and leadership efforts for CYSHCN. Parent-to-Parent of Wisconsin will provide individual family matching. ABC for Health will lead health benefits work. The Title V Program plans to support five Regional Centers and WellBadger, a Title V resource at the Wisconsin Women’s Health Foundation. Together, the five Regional Centers and WellBadger will provide families and providers ready access to information and referral services. The Genetics System Integration hub will work to integrate genetics with public health systems in order to support individuals with genetic conditions. As a Network, these hubs and Regional Centers work together to impact outcomes at the youth and family, community, health practice/health system, and policy/state level. All Medical Home and Youth Health Transition strategies support the role of youth and families in their implementation.

National Performance Measure 11: Percent of children with special health care needs having a medical home

Too many CYSHCN in Wisconsin do not receive medical care within the context of a medical home. BY 2025, the Title V Program aims to increase the percent of children with special health care needs ages 0 through 17 who have a medical home by 10%, from 42.8% to 47.0%. NPM 11 addresses the Title V Priority Need Enhance Identification, Access, and Support for Individuals with Special Health Care Needs and their Families.

1. Promote implementation of Medical Home best practices, and develop and disseminate consistent strategies and tools with common messaging that includes actionable steps for specific audiences. The Wisconsin Medical Home Initiative will collaborate with the Title V Program to create a Medical Home marketing plan. This plan will identify messages that are actionable for specific audiences to address key components of a Medical Home, such as having an identified primary care provider, having a well visit, and getting needed referrals. The marketing plan will include an evaluation to determine its effectiveness. The Wisconsin Medical Home Initiative and the Title V Program will continue to support implementation of the 10-year Wisconsin State Medical Home Plan.

The Wisconsin Medical Home Initiative will support outreach and education to increase awareness and knowledge of Medical Home concepts among families, community partners, health care providers, health systems, and at the state level. The Wisconsin Medical Home Initiative website will be maintained with up to date information. The Wisconsin Medical Home Initiative e-newsletter will provide outreach to health care providers and other interested partners with national and Wisconsin-specific Medical Home information. Website and e-newsletter analytics will be reviewed as part of contract monitoring. The “What is a Medical Home?” brochure will be available on the DHS website and through the DHS publication center in English and Spanish, and the number of brochures distributed will be reviewed. Regional Centers will serve in a leadership role in their region to promote the use of Medical Home tools and common messaging, with regional and community partners. Regional Centers will seek to expand partnerships specific to their regional strategic outreach. Outreach and promotional activities will be monitored for geographic reach. All Regional Centers, Parent-to-Parent of Wisconsin, and Family Voices of Wisconsin will incorporate Medical Home tools and common messages in training materials directed to families, health care providers, and community professionals. Regional Centers and information and referral staff will share Medical Home concepts with families and providers. Regional Center outreach, education, and trainings will prioritize reaching underserved populations and geographic diversity within their region.

In an effort to maintain high-quality support services, the Title V Program and Wisconsin Medical Home Initiative developed and are piloting a Medical Home self-assessment tool in 2020. At the beginning of 2021, all Regional Centers information and referral staff will complete the Medical Home self-assessment, and results will guide staff training and onboarding practices. The Title V Program aims to have 80% of Regional Center information and referral staff, who have been in their position for one year or more, self-evaluate at a minimum of 50% “competent” or “proficient” in Medical Home competencies by 2025.

2. Increase knowledge and skills about Medical Home and care coordination within and across systems: Implement trainings, use quality improvement strategies, and provide technical assistance opportunities for families, community professionals, health care providers, and health care systems. In 2021, Regional Centers and Family Voices of Wisconsin will provide training opportunities for families, community members, and healthcare professionals related to Medical Home. Training titles include Partnering with Your Child’s Doctor, Care Mapping, Coordinating Your Child’s Health Care (online), and Medicaid Made Easy. Trainings may be updated as needed. Training evaluations will use common questions to measure change in knowledge and skills. Distance training options to improve family access, support social distancing, and limit the spread of COVID-19 will be explored.

The Title V Program, Wisconsin Medical Home Initiative, and Regional Centers will connect with other state and community programs to encourage the inclusion of Medical Home concepts in their messaging, and the Title V Program and Wisconsin Medical Home Initiative will continue to provide technical assistance to health care providers and systems. Wisconsin anticipates the Title V Program will make funding available to Tribal health centers to implement Medical Home components using a quality improvement methodology. This may include using a Shared Plan of Care to improve cross-system coordination, or other change ideas identified by the Tribal health centers. The Title V Program, in partnership with Medicaid and Children’s Wisconsin, identified a lead and fiscal agent, and the American Family Children’s Hospital’s complex care programs will continue to participate in the HRSA-funded CoIIN for Children with Medical Complexity from January 1, 2021 to August 31, 2021.

The Title V Program will continue to support the participation of Family Voices of Wisconsin and the Title V Quality Improvement Director, in addition to the southern and southeastern Regional Centers. Several key objectives of this project include increasing families enrolled in the cohort who report unmet needs being met by 25%, and 50% of this same population receiving care in a Medical Home and with a Shared Plan of Care. In 2021, the team will continue to focus on actionable goal setting in the Shared Plan of Care and referrals to the Regional Centers and long-term supports. The Title V Program and Wisconsin Medical Home Initiative, in partnership with the Children with Medical Complexity CoIIN team, will explore ways to sustain this work. Options may include formation of a learning community after HRSA funding for the CoIIN ends in 2021. Title V Program staff, along with the Title V Quality Improvement Director, will participate in the Wisconsin Collaborative for Health Quality’s Adolescent and Child Health Steering team monthly calls, and promote the alignment of Medical Home and Youth Health Transition quality improvement work, including family engagement with the MCH Quality Network activities.

3. Increase access to cross-system care coordination services for CYSHCN and their families and design a pilot with evaluation strategies that include partnering with local public health and other community agencies with healthcare systems regarding referrals/resources including the social determinants of health. The Title V Program recognizes that addressing social determinants of health is an important contributor to improving health outcomes. In 2021, the Title V Program will contract with Wisconsin Medical Home Initiative to conduct an environmental scan to determine which health care systems are screening for social needs among pediatric populations (including CYSHCN and their families), and their referral process to community partners. At the same time, Wisconsin Medical Home Initiative will pilot quality improvement approaches with 2-4 community-based organizations to build their capacity as partners with clinics who are referring CYSHCN with social needs to their organization. The environmental scan will include conducting key informant interviews of community connectors, local and tribal health agencies, and community organizations who are working with health systems to provide coordinated services and care that include social determinants of health. The pilot experiences and scan will be used to develop guidelines for a Request for Applications. An evaluation plan of the pilots will be included. The Wisconsin Medical Home Initiative will convene a group of healthcare organizations – including managed care organizations – and community professionals to promote cross-system collaboration to share practices and lessons learned.

4. Improve access to specialty health care using technology such as telehealth/telemedicine. In November 2019, Wisconsin’s Governor Tony Evers signed legislation establishing definitions for telehealth, and requiring Medicaid to reimburse for a wide range of connected health services including asynchronous (store-and-forward) services, remote patient monitoring, and “brief communication technology-based services.” The new law excludes audio-only telephone, fax and e-mail from the definition of a telehealth service, but also indicates the state may develop reimbursement guidelines for those services. It also prevents the Medicaid program from denying coverage based on the recipient’s location, or requiring additional certification or other qualifications for coverage. Medicaid implementation is expected to begin in December of 2020. In response to this legislation, the Title V Program will contract with the Genetics System Integration hub to conduct an environmental scan and identify practices and health care systems that are or plan to utilize telehealth/telemedicine and current financing models (billing insurers, direct contract with specialty provider group, etc.). As part of their work, the Genetics System Integration hub will determine how this new legislation will modify or improve reimbursement strategies for genetics services. Based on findings, the Genetics System Integration hub will disseminate information gathered to stakeholders, including the Genetics Advisory Committee. The Genetics System Integration hub will also explore training options for health care providers to support use of genetics telehealth/telemedicine, such as the ECHO™ model.

5. Provide easily accessible referral resource information to families and providers, to link families to needed supports and services. Activities to support this strategy will occur at the individual, community, and system and state level. Regional Centers will be contracted to provide individual family information, resources, and referral services. Regional Centers will also follow up with individuals to determine the outcome of referrals and record findings in REDCap to measure the percent of families who receive Regional Center referrals that result in needed services received. Regional Centers will provide outreach to community partners, including healthcare systems, to inform them of resources and referral opportunities.

In 2021, the CYSHCN Unit with Regional Centers and other hub network partners will focus outreach to agencies with a direct connection to families, such as the Family Foundations Home Visiting Program, to increase awareness of Regional Centers and promote referrals. Title V Program staff will continue regular meetings with the Department of Children and Families to increase local Home Visiting Program awareness of Regional Centers and other CYSHCN programming, and identify cross-collaboration activities. The Title V Program will work with ABC for Health to support Regional Centers in relation to insurance access and benefit issues, and to assist families referred to them by Regional Centers. ABC for Health will develop and test a process to create health care medical home coverage roadmaps for families. Contracts with the Wisconsin Women’s Health Foundation and Regional Centers will include activities to identify resources, and provide ongoing updates for inclusion in the WellBadger information repository. Family Voices of Wisconsin and ABC for Health will create, update, and distribute fact sheets and video tips related to resources in multiple languages and provide training to families and providers regarding resources. Regional Centers and ABC for Health, through their individual work with families/youth will identify, evaluate and report barriers to services. This information will inform Family Voices of Wisconsin and ABC for Health’s advocacy and policy work. Family Voices of Wisconsin will promote and support the Family Action Network.

System level funding to support care coordination and case management for families through public benefits is seen as a critical component to Medical Home implementation. ABC for Health will conduct an environmental scan to identify best practices other states that are or plan to utilize HealthCheck to support access and case management. ABC for Health will convene key partners and share the findings of the environmental scan and recommendations to inform joint efforts among partner groups. The CYSHCN Unit and ABC for Health will also align HealthCheck outreach efforts with Medicaid.

The 2020 MCH Needs Assessment identified that via environmental and social barriers, too many Wisconsinites lack meaningful social connections, which can lead to increased risk of adverse health outcomes. In response, the newly-developed SPM 4 aims to have 10% of strategies promote social connectivity and access to informal/formal relevant resources by 2025. The Title V Program recognizes that linking families to other families can play an important role in promoting social connections. The Title V Program will collaborate with Parent-to-Parent of Wisconsin to provide parent-to-parent matching. Parent-to-Parent of Wisconsin will recruit and maintain diversity (culture, geography, diagnosis) of parents to serve as trained support parents. Title V Program CYSHCN-specific staff will co-lead this new cross cutting priority area.

6. Develop and implement best practices for increasing data capacity of existing data sources and expanding partners’ capacity to use and leverage data to ensure the needs of underserved families are met. In order to better describe the CYSHCN population, the Title V Program will contract with the United States Census Bureau to conduct an oversample of Wisconsin children in the National Survey of Children’s Health. In addition, to better understand and reach diverse communities, the Title V Program will work to increase reporting demographic information by contracted agencies. The Title V Program will identify best practices within the CYSHCN Network and other programs that successfully collect this information without impacting utilization and develop training modules and materials to assist the Regional Centers with collection of demographic information of families during information and referral calls, and to include questions related to demographic information during post-training evaluation surveys for families.

7. To strengthen family, youth, and community member engagement, all CYSHCN programs will use the Community Engagement Assessment Tool to measure progress and design an annual action plan. The Title V Program and CYSHCN Network will participate in a statewide activity towards strengthening family, youth and community member engagement across Title V programming. Within the first quarter of 2021, CYSHCN-contracted partners will complete the Community Engagement Assessment Tool for their specific program with family, youth and/or community members. By the end of the second quarter of 2021, they will create (with family, youth and/or community members) an action plan for the remainder of the year, focusing on one indicator from the Community Engagement Assessment Tool. They will implement the action plan with family, youth and/or community members throughout the remainder of the contract year.

National Performance Measure 12: Percent of children with special health care needs who received services necessary to make transitions to adult health care

Too few adolescents ages 12 through 17 with special health care needs receive the services and supports necessary to transition to adult health care. In 2021, the Title V Program will collaborate with the Youth Health Transition Initiative and other CYSHCN Network agencies to implement strategies that impact Youth Health Transition at the policy/state, community, and individual/family levels. Strategies will be aligned when possible to support an integrated systems approach to Youth Health Transition and coordinate with activities of NPM 10 to include the needs of CYSHCN. NPM 11 addresses the Title V Priority Need Enhance Identification, Access, and Support for Individuals with Special Health Care Needs and their Families.

1. To promote best practice in youth health transition planning, develop and disseminate consistent strategies and tools with common messaging. The Youth Health Transition Initiative and CYSCHN Network of Regional Centers and hubs will continue to promote common messages and disseminate tools for outreach to individual youth and families as part of Regional Center information and referral services. The Youth Health Transition Initiative and the Network will also promote the Health Transition Wisconsin website and its tools, along with those of the Got Transition Program using the Youth Health Transition Initiative listserv. Measures will include the number of users and users new to the website. The Title V Program will continue to partner with Got Transition as a member of its national advisory. The MCH Adolescent Consultant will be kept informed of this work, and the Youth Health Transition Initiative will continue to promote the inclusion of health transition for youth with special health care needs in other Title V Program work, such as NPM 10. The Title V Program will strengthen collaboration across state agencies through participation in the cross-state agency Community of Practice on Transition led by the Transition state team lead.

The Youth Health Transition Initiative will disseminate their brochure and other materials via the Regional Centers and hubs, community partners, and conference attendees. Additionally, they will create new messaging around transition topics, such as promoting 18 as the age decisions need to be made, the difference between pediatric and adult health care, the need to have a primary care provider, and the importance of well visits. The Youth Health Transition Initiative will use the expertise of youth, family members, and community professionals as advisors in this work.

The Youth Health Transition Initiative, in conjunction with Wisconsin Medical Home Initiative, created a Medical Home and Youth Health Transition competency survey for all CYSCHN Network information and referral staff. Based on the results of this self-assessment, staff from the Youth Health Transition Initiative will assist Regional Centers to ensure that the Network partners have the necessary skills and knowledge to address any questions that arise. In addition, as new staff are oriented, this survey can be used as a thorough training guide.

For more advanced collaboration, the Title V Program will contract with the Providers and Teens Communicating for Health (PATCH) Program to support their expansion of programs into all five regions of Wisconsin. This partnership will includes the goal of integrating needs of CYSHCN into the excellent foundation of the PATCH Program.

2. To increase knowledge and skills about youth health transition, implement trainings, use quality improvement strategies, and provide technical assistance opportunities for families, community professionals, healthcare providers, and healthcare systems. The Youth Health Transition Initiative will continue to support a Youth Health Transition learning community with quarterly learning community webinars. The Youth Health Transition Initiative will measure the percent of participants in learning community calls who report increased knowledge from webinar participation. The Youth Health Transition Initiative, in partnership with the Wisconsin Adolescent Champion Model, will collaborate in promoting health care transition resources among stakeholders. Regional Centers will work to expand regional healthcare partner participation and contributions in the Youth Health Transition learning community webinars and presentations.

The Youth Health Transition Initiative, Regional Centers, Family Voices of Wisconsin, and other Network partners will promote Youth Health Transition training opportunities such as: “Build Your Bridge” (for families); “Bridging the Gap” (adaptable for multiple audiences); “What’s After High School?” (for families); “Closing the Gap” (for health care providers). The Youth Health Transition Initiative will explore distance training options and measure the number of organizations, participants, and trainings conducted. In addition, the Youth Health Transition Initiative will assess the percent of participants who report an increase in knowledge, skills, and intent to change practice.

The Youth Health Transition Initiative will also connect with other community programs and encourage them to incorporate Youth Health Transition messaging into their offerings. In addition, they will work with state and local health care provider organizations and pursue conference opportunities to increase health care provider exposure to Youth Health Transition goals and strategies. Another new endeavor in 2021 will be to determine how adult providers are motivated to accept young adults with special health care needs in their practice, which has been a challenge for many years.

3. To build state healthcare system capacity across the state, evaluate and build upon existing champion models of transition service delivery and reimbursement. The Youth Health Transition Initiative will conduct an environmental scan of major health care providers and systems regarding transition policies or guidelines (formal written commitment) or an interest in developing standards around Youth Health Transition in their practices. Through key informant interviews and similar techniques, they will identify advocates of Youth Health Transition within healthcare systems across Wisconsin. This will set the stage for work to be completed beyond 2021.

4. To strengthen family, youth, and community member engagement, all CYSHCN programs will use the Community Engagement Assessment Tool to measure progress and design an annual action plan. This strategy is described in the NPM 11 Application Narrative, in Strategy 7.