Transition (FY 2021 Application)

Through the five-year needs assessment process, the state priority need to “Ensure CYSHCN have access to continuous health coverage, all benefits they are eligible to receive, and relevant care where they live and learn” was linked to NPM 12, the percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care.

Michigan data from the National Survey of Children’s Health (NSCH, 2016-17) supports this selection. In Michigan, 16.0% of CYSHCN reported they received services necessary to transition to adult health care. This is comparable to the 16.7% of CYSHCN nationwide who reported receiving these services. However, when CYSHCN with less complex health care needs are compared, Michigan data demonstrates an opportunity for improvement with 16.6% reporting positively compared with 20.3% reporting positively nationwide. Specific NSCH transition indicators reveal additional opportunities for improvement. For example, 17.9% of Michigan respondents reported they have an up-to-date written plan to meet health goals/needs and 20.8% discussed with their provider shifting to practices that treat adults. Several strengths were also found such as 74.7% of respondents reported their doctor worked with the adolescent to gain skills to better manage their condition and 57.4% of respondents reported their provider discussed their child’s health insurance coverage into adulthood.

Given these findings, three objectives were developed which focus on promoting awareness, developing skills and creating capacity for measuring improvement. Each objective targets areas of opportunity, while simultaneously addressing the state priority need. In addition, the objectives work in tandem to strengthen the Michigan Title V needs assessment pillars of improving capacity to achieve equitable health outcomes, engage families and communities and delivery culturally, linguistically and age-appropriate health education. Working in conjunction with a network of partners to address transition challenges for CYSHCN and their families, the strategies contained within the objectives reflect input from stakeholders at every level. CSHCS partnerships are varied and include local health departments, Medicaid Health Plans, school wellness centers, family advocacy organizations, and specialty providers. Title V funding is used to provide care coordination services through contracts with local health departments, which includes medical transition services. Transition is included as a Minimum Program Requirement during the LHD accreditation process. Transition objectives and strategies build on the local health department partnership, in conjunction with stakeholders, to improve awareness, provide training, and promote systematic change in the way transition progress is tracked and reported.

Objective A: By 2025, increase the percent of CYSHCN ages 12 and older receiving services necessary to transition from pediatric to adult health care from 21.6% to 25%.

Thanks to the support of a replication grant from the Association for Maternal and Child Health Programs (AMCHP), CSHCS completed a pilot program in 2019 to develop a process and toolkit for integrating transition programming into Child and Adolescent Health Centers (CAHC) school wellness centers. The first strategy for this objective is to expand the pilot to form a learning collaborative designed to promote health care transition in grades 9-12 through school clinics. Each year, CAHC-funded programs must implement a continuous quality improvement initiative that utilizes a Plan-Do-Study-Act (PDSA) cycle. The transition project meets these requirements. By expanding the pilot to additional schools, the goal is to formalize the toolkit and promote the process as an option to fulfill the Quality Improvement requirement.

For this strategy, the transition specialist will work with MDHHS CAHC state staff to replicate the pilot’s efforts in other school-based clinics, school-linked clinics and school wellness centers. Three to five additional clinics will be identified that represent diverse populations and have the capacity to implement the pilot. Each clinic will complete Got Transition’s “Current Assessment of Health Care Transition Activities” to identify their baseline. Teams will work together to customize documents for their clinics and will discuss how to effectively integrate transition programming into clinic workflow. The transition specialist will provide training specific to the concerns of participating clinics. Data collection will begin in the fall and will be collected monthly through the end of the school year. Along the way, clinic teams will participate in training webinars and conference calls to provide feedback on the process, ask for guidance and share ideas from other participating clinics, as well as successes. The transition specialist will document activities, collect data, and seek guidance from Got Transition as appropriate. Upon completion of the school year, clinics will once again complete a “Current Assessment of Health Care Transition Activities” as a post-test. Data compiled from these two data collection points will be compared and used to evaluate the project’s success and identify future direction. Information from participating clinics and youth will also be collected to evaluate the project’s effectiveness, and findings will be used to update the Transition Toolkit for School Wellness Clinics. Results will be shared with stakeholders including CSHCS and CAHC leadership and will be used to expand the project’s reach.

The Family Center is an integral component of CSHCS in Michigan. The second strategy is to increase the delivery of family-centered transition educational efforts by utilizing the Family Center and Family Center Youth Consultant to develop and distribute information, resources and trainings to families and family advocate organizations throughout the state. This will include revising Family Center materials, including the Family Center’s Family Guide, to reflect updated transition information.

The Family Center Youth Consultant provides a unique youth perspective on transition activities. The Youth Consultant will be involved with the school wellness center learning collaborative by providing insight on how to engage and expand the role of youth advisory committees in the project. The Youth Consultant will also review educational materials to ensure they are appealing, relevant and appropriate for their intended audience.

The transition specialist will work with the Family Center to provide training to parent mentors. Utilizing a train-the-trainer approach, parent mentors will receive training on topics such as guardianship and alternatives, self-determination, self-advocacy, self-care and the importance of health maintenance. The transition specialist will work with the Family Center and Family Leadership Network to integrate transition training into annual meetings, as appropriate. On request, the Family Center provides trainings to local health departments and other family advocate organizations. By instilling knowledge and equipping others, Michigan is working to cast a broader net to reach as many families as possible with health care transition information, while still assuring consistent messaging and evidence-informed approaches are utilized.

The third strategy is to create and implement a marketing plan for the Transition to Adulthood online course. During FY 2019, CSHCS piloted the Adolescent Transition Online Course with 1) the Family Center youth consultant and 2) participants in an AMCHP transition replication pilot project within a school wellness clinic. Feedback received from student participants was incorporated into the online course.

With updates completed, the youth consultant, transition specialist and Family Center staff will develop a marketing plan for the Transition to Adulthood course. The purpose of the marketing plan is to make adolescents and their families aware of the course and the need for health care transition services. Benchmark data established at the end of 2018 will serve as a baseline for measuring the course’s appeal and applicability. The course will be updated annually to ensure the information provided is age appropriate and linguistically appropriate, as well as culturally sensitive and relevant for youth.

Objective B: By 2025, increase by 10% the number of health care professionals who have received training on transition from pediatric to adult health care.

The first strategy for this objective is to design, implement and promote online transition courses and other resources to physicians, nurse practitioners, physician assistants, registered nurses, social workers and other health professionals. The training will be based on evidence-informed materials from Got Transition’s Six Core Elements.  Through this training, participants will better understand how to:

• Establish a transition policy;
• Track and monitor transitioning youth and their activities;
• Assess transition readiness and orient adolescents to an adult practice;
• Develop a transition plan of care;
• Transfer care to an adult provider; and
• Assure the transfer is complete. 

Course content will be determined by a group of internal stakeholders including a physician from the Office of Medical Affairs, an LHD nurse, and a social worker. The course will be piloted with the Office of Medical Affairs and an LHD. The transition specialist will then work with the communications team to develop a marketing plan to promote the online courses to physicians, nurse practitioners, physician assistants, registered nurses, social workers and other healthcare professionals. Evaluation data collected during the course will be used to monitor the course’s effectiveness and participant satisfaction. The online courses will be reviewed annually and updated as needed.

The second strategy related to this objective will be to continue to support the HRSA CYE grant partners to improve transition for children and youth with epilepsy in rural communities. In the Title V needs assessment, stakeholders reported 1) a lack of access to specialty care providers in rural areas and 2) a lesser quality of care for those living in poorer, rural areas. Therefore, addressing health needs of CYSHCN in rural areas is one strategy to achieve equitable health outcomes across the population. By August 2023, the CYE project intends to increase by 75% the number of completed health care transition readiness assessments of youth (ages 14-22) with epilepsy within the participating clinics. To achieve this goal, the project will support implementation of transition readiness assessment tools and follow-up strategies among participating clinics. Each clinic team will identify the readiness assessment tool they would like to use and devise a process for implementing those assessments within the clinic flow. A QI project will be completed to determine how well their process works. The clinics will use a PDSA cycle with support from the Project Coordinator and the QI Leadership Team.

The project will support follow-up on transition topics through in-person and technology-enhanced options. Guided by the Family Center Youth Consultant, the Leadership Team will seek input from youth with epilepsy on technology-enhanced tools to support self-management. The Leadership Team, Youth Consultant, and Family Engagement Consultant will compile in-person training and online modules for transition topics and share with participating clinics. To support clinic sites, healthcare transition trainings will be offered to and conducted with community partners (schools, daycares, and health care professional groups) throughout the project. Specific trainings geared toward building self-care skills and independence among youth and families will be offered by the Epilepsy Foundation and Family Center throughout the project.

Objective C: By 2025, increase by 10% the number of partner organizations who reach the next level on the Got Transition “Current Assessment of Health Care Transition Activities.”

A key component of Michigan’s CSHCS transition plan is to build relationships with partner organizations and provide them with the resources they need to implement transition activities with the adolescents they serve. Work in prior years has established relationships with MHPs, LHDs, providers, school wellness centers, and families. For the first strategy of this objective, CSHCS will adopt Got Transition’s “Current Assessment of Health Care Transition Activities” and implement the assessment with partners across the state. This strategy will improve the ability to measure improvements in transition related activities.

As a second strategy, MDHHS will continue to contract with the Regents of the University of Michigan, Child Health Evaluation and Research (CHEAR) Unit for an amount not to exceed $20,000 to monitor transition work using an Evidence-informed Strategy Measure (ESM) developed by CHEAR and to provide ongoing analyses and support related to the CSHCS program. The ESM provides data on the percent of CSHCS clients age 18 to 20 years in selected diagnosis groups that have transferred care from a pediatric to an adult provider. CSHCS will continue to work with U of M CHEAR to monitor this ESM and to seek ways stratify the data by race, ethnicity and region. By stratifying the data, CSHCS hopes to identify health inequities in health care transition services, as well as better understand how to target educational efforts at a regional level to improve transition outcomes.

The third strategy for this objective is to compile and publish scorecards to assist partner organizations. To monitor transition activities across the state and to demonstrate progress to partners, the transition specialist will create a scorecard that combines partner progress; Got Transition recommendations; and regional, state and national results. These scorecards will establish benchmarks and build a foundation of measurement for ongoing monitoring and continuous quality improvement.

Medical Care and Treatment for CSHCN (FY 2021 Application)

Children’s Special Health Care Services (CSHCS) was created to find, diagnose, and treat children who have chronic illnesses or disabling conditions. The mission of CSHCS, to improve health outcomes and enhance quality of life of children served, is accomplished by assisting children and their families in accessing the broadest range of appropriate medical care, health education, and support. It does this by removing barriers to care, including financial barriers, improving access to services and strengthening the existing systems of care.

During FY 2019, 50,211 individuals were enrolled in CSHCS and of these individuals, 37,354 were also eligible for Medicaid. Although there is an annual fee to enroll in CSHCS, this fee is waived if the client has Medicaid, MIChild, Healthy Michigan Plan, a court-appointed guardian, or lives in a foster home. The fee, which includes six possible payment levels paid through a payment agreement, is based on family income and family size. The lowest payment level is $120 for individuals below 200% of the Federal Poverty Level (FPL), and the highest level is $2,964 for those above 500% of FPL. These funds, along with Medicaid and state general funds, are combined with Michigan’s Title V funding (over 30% of total funds) to support medical care and treatment of CSHCS recipients.

During focus groups conducted for the 2020 needs assessment, CSHCS stakeholders shared that service barriers impact children’s availability to access timely health care services and therapies, such as the availability of specialty providers, insurance, language and culture. Similarly, the health status assessment revealed almost a third of CSHCN with complex health needs did not receive needed care coordination, and CSHCN are more than twice as likely as non-CSHCN to report that they did not receive care coordination (National Survey of Child’s Health, 2016-2017). The encounter survey (a component of the community themes and strengths assessment) highlighted financial burdens created by a complex health care system. In response, the state performance measure—the percent of CSHCN enrolled in CSHCS that receive timely medical care and treatment without difficulty—was chosen to align with the state priority need identified through Michigan’s 2020 needs assessment to ensure CSHCN have access to continuous health coverage, all benefits they are eligible to receive, and relevant care where they live and learn.

In addition to providing a substantial medical care benefit, the program empowers families to become engaged, self-determined, and informed caregivers who are strong advocates for their children. Much of this work is accomplished through the CSHCS Family Center for Children and Youth with Special Health Care Needs (Family Center) which provides ongoing support, education, and resources to families of CSHCN. In FY 2019, the Family Center responded to more than 11,000 phone calls through the family phone line and reported an additional 1,146 contacts with families through health fairs, presentations, trainings, and other events. All families of CYSHCN can utilize Family Center services, regardless of CSHCS enrollment status.

Objective A: By 2025, increase the percentage of CSHCS CAHPS' respondents who rate their health care with a top box score of 9 or 10 from 71.9% (2019) to 75%.

The first strategy to meet this objective is for CSHCS to continue enrolling children with special needs into the program. The program benefit, while not intended to cover all the care a child needs, helps to reassure families that necessary specialty care for their child’s qualifying diagnosis will not create undue financial burden. CSHCS is the payer of last resort and requires families to follow their primary and secondary insurance rules. If a family’s income indicates that they may be eligible for Medicaid, they are required to apply for Medicaid.

Children with special needs who qualify for Medicaid and CSHCS continue to receive care through Medicaid Health Plans, barring a few exceptions. Children who are already receiving Medicaid, and who are determined to be medically eligible for CSHCS, are automatically enrolled. Automatic enrollment into CSHCS increases access to care coordination and case management services, which benefits families.

The second strategy of this objective is to enhance and/or expand the capacity of specialty clinics to assure the delivery of patient-centered, family friendly care. This two-prong strategy focuses on both Children’s Multi-Disciplinary Specialty (CMDS) clinics and Field Clinics. CMDS clinics provide pediatric specialty care to children with complex medical needs and make up the largest segment of the program’s specialty clinics. CSHCS supports CMDS clinics through an enhanced reimbursement mechanism for increased care coordination. The enhanced reimbursement provides additional resources for the development of an integrated care plan that involves the family as part of the care team. It also allows for additional management, follow-up and support services that facilitate on-going medical care, referrals and health education.

In 2019, CMDS clinic staff piloted a site review tool and completed site visits at three clinics. Site visits will continue in 2021, with the goal that all clinics are visited on a four-year cycle. Clinic sites are reviewed and offered recommendations based on core staffing, plans of care, care coordination capabilities, referral network, health education, family engagement, healthcare transition and billing appropriateness. In FY 2021, an additional focus will be placed on health equity and the social determinants of health during the clinic site reviews.

In 2020, working with the National Center for Care Coordination Technical Assistance, CSHCS adopted the Pediatric Integrated Care Survey Tool for its CMDS clinics. The survey, administered through Survey Monkey, is short and easy for clients to complete on their smart phones, at their convenience. The survey measures family experiences of care integration. In FY 2021, the survey will be piloted with one clinic, before rolling out to other clinics. CSHCS will provide participating clinics with a report that outlines client satisfaction and individual clinic findings. Through these shared results, CMDS clinics will be poised to conduct quality improvement activities that will increase their ability to meet the needs of clients and families. In addition, findings will be shared internally and used to augment CAHPS findings to better understand and communicate the benefits CSHCS provides to families. 

Additionally, CSHCS will seek to expand its use of field clinics to include an Audiology Field Clinic. Field clinics are designed to improve access to specialty care within underserved areas in Michigan. Unlike CMDS clinics, field clinics do not reimburse providers for services rendered, but rather offer stipends and travel reimbursements to health professionals willing to travel to off-site locations to provide diagnostic and follow-up services. Beginning in FY 2021, CSHCS will work with Michigan Medicine to send a multi-disciplinary team consisting of an Otolaryngologist, Audiologist and Speech Pathologist to rural South-central Michigan to conduct diagnostic evaluations and follow-ups with Amish children. If deemed eligible, these children will be referred to CSHCS for enrollment. CSHCS will work in conjunction with the local health department to identify culturally sensitive approaches for engaging the Amish community. Findings from this demonstration project will be assessed and used to determine the feasibility for future field clinic expansion.

The third strategy for this objective is to expand and support the use of telemedicine to improve access to specialty care in rural and underserved areas. CSHCS continues to work to increase access to health care services for CSHCN utilizing telemedicine. In FY 2021, the telemedicine workgroup convened in 2019 will review information associated with the rapid expansion of telemedicine that occurred during the COVID-19 pandemic and consider permanent policy changes to improve access to specialist care, while remaining compliant with federal and state rules, regulations and laws.

The fourth strategy seeks to improve the delivery of care for Michigan’s most medically complex children. During FY 2021, CSHCS will work with pediatric palliative care and hospice providers to better understand the current approaches used to address needs of medically vulnerable children. This strategy will focus on understanding the scope of services currently provided, what services are best offered in a home setting versus a clinic setting, and identifying ancillary services that are needed, beginning with respite.

CSHCS will convene a group of family members of CSHCN, providers, and Medicaid representatives to assess the different palliative care models currently offered in Michigan. In addition, CSHCS will work to expand its CMDS clinic model to incorporate palliative care, pilot a pediatric palliative care CMDS clinic and evaluate. MDHHS will continue to contract with Michigan Medicine’s Partners for Children program for medically complex children for an amount not to exceed $115,000 to better understand how services can be delivered in the home and/or via telehealth. Finally, CSHCS will assess the current utilization of respite services, the need for additional services and how best to meet that need.

Objective B: By 2025, increase by 10% the number of meaningfully engaged community partners (families, youth, LHDs, CAC members, contractors, clinic sites, health care providers, other professionals, etc.) to improve knowledge of the CSHCS program.

The first strategy is designed to ensure all families have access to CSHCS resources and that these resources are understandable and relevant to the population. CSHCS will review its brochures, online resources, webpages, and printed documents to ensure they are culturally sensitive, family-friendly and ADA compliant.

Working through the Family Center, the second strategy is to continue to build a coordinated and systematic approach to family engagement, through the issuance of camp and conference scholarships; provision of resource and referral services; and utilization of the Youth Consultant to maximize outreach to adolescents. The Youth Consultant is a subcontracted position within the Family Center. The position is designed to serve as the Youth Consultant and student assistant on Michigan’s Children and Youth with Epilepsy (CYE) grant. In this role, the Youth Consultant attends all CYE meetings, partners with the CYE Project Team and CYE Parent Coalition to complete a youth needs assessment, and reviews all documents and resources created for the CYE project. In addition, the Youth Consultant provides peer support to youth and families, offers personal testimonials to other youth with an epilepsy diagnosis, and works collaboratively with all families, youth with special health care needs, MDHHS staff, CSHCS Local Health Department staff, and CSHCS division staff.  The Youth Consultant represents the Family Center as the Youth Representative for the Michigan AAP. The Youth Consultant also serves on the Young Adult Council of the American Academy of Pediatrics and the Youth Engaged for Change Committee of the federal Department of Health and Human Services.

In FY 2021, the Family Center will continue to grow the statewide Family Leadership Network which connects families with resources across the state. The network, which consists of up to 20 ambassadors that each reside within one of Michigan’s 10 prosperity regions, will be utilized to do in-reach within their communities to promote CSHCS, as well as to instill self-advocacy skills within families and assist with resource review and deployment.

The third strategy for this objective is to develop and implement a comprehensive communication/outreach plan to improve awareness of CSHCS among providers, partners and families of eligible children with qualifying conditions. In 2019, CSHCS created a committee to review and update the Outreach and Training plan. In FY 2021, efforts will be made to reach diverse communities of color and ethnicity to assure potentially eligible diverse communities are aware of the program and its benefits.

The fourth strategy is to maintain a competent workforce that is knowledgeable about the program and able to assist families in understanding their child’s condition and how to access the system of care in place. MDHHS will continue to contract with the MSU Institute for Public Policy for an amount not to exceed $25,000 to design and offer regional training opportunities to LHDs and MHPs to ensure a competent local CSHCS workforce. LHD training will focus on enhancing program staffs’ skills and abilities to enroll and renew families and provide quality care coordination services. MHP staff will receive ongoing education to improve their awareness of the CSHCS program and increase their ability to provide quality care coordination services. In addition, MHP staff are invited to participate in LHD calls on a regular basis and to attend annual regional LHD meetings.

Objective C: By 2025, improve the percentage of CSHCN who report receiving care in a well-functioning system from 17.8% to 20.3%.

The first strategy for this objective is to develop a comprehensive evaluation plan to measure CSHCS’s capacity and ability to provide effective, efficient and high-quality services to clients. Michigan is rich in data, having developed a data warehouse which allows access to a variety of claims, procedural and provider data sets. Data from the data warehouse is linked to other data sets such as vital records, registries and more. The CSHCS program has access to these data sets and adds data collected through the CSHCS client database and CAHPS survey. The large quantity of data allows CSHCS to make program adjustments and also presents an opportunity to combine data into a more comprehensive approach to evaluation that tracks patient outcomes, creates actionable improvement strategies, and effectively communicates program benefits in a systematic and meaningful way.

In 2019, CSHCS was accepted into the 2020 MCH Workforce Development Center’s Learning Cohort to devise a comprehensive evaluation strategy. With guidance from the MCH Workforce Development Center, CSHCS will develop an evaluation plan that seeks to describe the program, select and focus an evaluation design, identify meaningful data, utilize data to make decisions, and communicate results to stakeholders and policy makers. Participation with the Learning Cohort provides CSHCS the opportunity to develop new leaders and maximize its use of MCH Workforce resources.

The second strategy for this objective is to implement a provider survey to better understand provider expectations, experience, and underlying biases regarding systems of care for CSHCN. In 2019/2020, CSHCS initiated a hospital focus group with Michigan’s three large children’s hospitals, with the goal of obtaining feedback on the CSHCS program and the systems of care for CSHCN. The site visits provided CSHCS leadership with an opportunity to educate hospital leaders and to garner feedback related to challenges they face in addressing special health care needs of children. The site visits have led to improved relationships with key partners. In FY 2021, CSHCS leadership will implement an electronic survey to reach specialists regarding their experience with the CSHCS program. Data will be compiled and utilized to inform program changes and findings will be integrated into the CSHCS evaluation framework.