CSHCN Overview
Children with special health care needs (CSHCN) include children with a wide variety of physical, emotional, and behavioral conditions, some of which qualify to receive support through the Children’s Special Health Care Services (CSHCS) program within MDHHS. CSHCS annual program enrollment has grown to approximately 50,000 beneficiaries. The CSHCS Division is housed in the Bureau of Medicaid Care Management and Customer Service. The CSHCS Division includes the Family Center for Children and Youth with Special Health Care Needs (Family Center), which is parent-directed and designed to support and connect families with the care they need using a family-centered approach. CSHCS also includes sections focused on customer support, policy and program development, quality and program services, and the special needs fund.
For the CSHCN population, Title V funds are primarily used to support medical care and treatment for CSHCN. This could also include dental services when related to a qualifying diagnosis for which CSHCS covers dental care. Title V funds are also used to support bullying prevention activities specific to CSHCN. Other federal funds that support CSHCS include a HRSA Epilepsy grant and Medicaid. Key partners include Medicaid, Medicaid Health Plans, local health departments (LHDs), service providers, CSHCN and their families, the CSHCS Advisory Committee, the Family Leadership Network, Michigan Family to Family Health Information Center, and Michigan Family Voices.
In addition to direct funding for CSHCS, LHDs can elect to expend additional Title V Local MCH (LMCH) dollars for CSHCN. LMCH is a gap-filling funding source and LHDs have the flexibility to choose where they spend funds based on local needs. Some LHDs use Title V funds to address CSHCN gap-filling needs; other LHDs may work on CSHCN activities with other funds and therefore all MCH and CSHCN activities are not captured in their Title V LMCH workplans. In FY 2022, three LHDs selected NPM 12 (transition) to identify enrollees of transition age and provide education and plans of care for gap-filling transition services. Additionally, two LHDs used LMCH funds to address SPM 4 (medical care and treatment for CSHCN) by providing gap-filling case management services, assistance with CSHCS enrollment, outreach, and monthly newsletters. One agency worked with two local hospitals’ Neonatal and Pediatric ICUs to support consistent discharge processes and referrals to CSHCS. Most agencies were able to complete these activities at reduced capacity or through telephone contact instead of face-to-face visits due to COVID-19. Agencies report staff burnout and loss of program staff during the year which also impacted services. One agency planned to provide mental health services (SPM 6) for CSHCN but was unable to fill the Medical Social Worker position, and so services were not rendered.
Michigan’s approach to improving the health and well-being of CSHCN through Title V focuses on access to continuous health coverage and benefits. Services offered are patient-centered/family friendly, culturally appropriate and coordinated. These attributes are reflected in all CSHCS services, including those specific to health care transition. In the current five-year cycle, the CSHCS program also began to work on bullying prevention for CSHCN which is included in the NPM 9 (Bullying) state action plan.
Transition (FY 2022 Annual Report)
The Title V Maternal & Child Health Needs Assessment Report completed in 2020 identified opportunities related to transition to adult health care for CYSHCN in Michigan. According to the 2019-2020 National Survey of Child Health (NSCH), only 22.5% of CYSHCN in Michigan had the support needed to transition to adult care. Focus groups and encounter surveys noted silos in communication across providers and provider turnover as challenges that contribute to difficulties with transition to adult health care. In response to these results, Michigan continued the commitment to NPM 12 (Percent of adolescents with and without special health care needs who received services necessary to make transition to adult healthcare) as a priority focus.
To address this NPM, CSHCS created and implemented a comprehensive strategic plan to improve health care transition across the state. Accomplishments in FY 2022 included the launch of a revised CSHCS transition website that includes expansive resources, the successful pilot of an automated transition letter for 14-year-old enrollees that aligns with the recommendations from Got Transition, and the implementation of a revised Current Assessment of Health Care Transition Activities in Care Coordination Programs with Local Health Departments (LHDs). CSHCS also continued collaboration efforts with the Michigan Interagency Transition Taskforce to integrate health care transition into the Michigan Secondary Transition Model.
Key collaborations and partnerships include the Michigan Interagency Transition Taskforce (MITT), Medicaid Health Plans (MHPs), LHDs, MDHHS Child and Adolescent Health Centers (CAHC), The Family Center for Children and Youth with Special Health Care Needs (Family Center), Children and Youth with Epilepsy (CYE) grant recipients and Got Transition. Title V funds support the partnership with LHDs through care coordination and case management services, which include health care transition activities. Transition is also included as a Minimum Program Requirement during the LHD accreditation process.
The COVID-19 pandemic continued to create challenges in moving health care transition work forward. LHD staff resources were redirected to the pandemic response, limiting their availability to work with youth on health care transition services. In response, CSHCS focused on streamlining transition resources that are available in the virtual environment and adjusting strategies to allow flexibility for partners. Another challenge during the reporting year was a staffing vacancy for the Transition Specialist position at MDHHS for approximately five months of this reporting cycle. Initiatives moved more slowly due to this vacancy.
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%.
The first strategy was to expand the school wellness center learning collaborative through school-based health clinics. CSHCS continued collaboration with Got Transition and the School-Based Health Alliance to finalize their School-Based Health Center Playbook on Health Care Transition which was released during this grant cycle. MDHHS’ school wellness center transition pilot project was selected as one of the two programs that were included in the ‘Examples from the Field’ section of the playbook. Expansion of the pilot is planned for FY 2023.
The CSHCS Transition to Adult Services online module was also updated in this grant cycle and is marketed within the revised CSHCS Transition to Adulthood website. In FY 2022, 62 individuals completed the entire Transition to Adult Services online module. Of the individuals who completed the training, 9% were age 21-25 and 91% were 26 and older. Fifty-seven percent (57%) of completing individuals reported the course would have an impact on their transition to adult services and 76% rated the course four or five out of five stars (with five being the best rating). Participants responded that the resource page at the end of the module had “good information” and that it was a great course for youth.
The third strategy was to continue the partnership with the University of Michigan Child Health Evaluation and Research (UM-CHEAR) unit to provide ongoing analyses of the transition ESM. The measure is based upon selected groups that include cardiology, endocrinology, gastroenterology, hematology-oncology, nephrology, neurology, pulmonology, and rheumatology. The measure combines data from three sources: 1) CSHCS database; 2) CHAMPS (Medicaid claims); and 3) UM-CHEAR provider database which includes providers statewide. In FY 2022, UM-CHEAR reported 42.8% of targeted clients had encounters with only adult providers indicating those clients had a successful transition to the adult model of care.
The current ESM data collection has shown incremental decreases in successful transitions, which currently aligns with the results on the National Survey of Children’s Health NPM on Transition for Michigan. The National Survey of Children’s Health indicated significant improvement for Michigan in CYSHCN receiving services necessary for transition to adult health care from 16.0% in 2016-2017 to 26.7% in 2019-2020. However, in 2020-2021 that percentage decreased to 20.0%. The COVID-19 pandemic was likely a significant contributing factor to these decreases. The decrease in this ESM data corresponds with a change in the transition transfer of care policy at Michigan Medicine. In 2019, Michigan Medicine moved the target transition age from age 18 to age 21. Since the ESM specifically targets transfer of care by age 21, this policy directly impacts the ESM outcomes. In 2022, CSHCS and members of CHEAR convened to evaluate and strengthen this ESM. Changes to the ESM are planned for FY 2023.
The final strategy for this outcome was to finalize and pilot an automated transition letter for 14-year-old enrollees to align with the recommendations from Got Transition. The automated letter was piloted in the CSHCS database system and was successful. To improve consistency and enable the creation of transition reports for LHDs, the next phase of this project included changing the generation of the existing automated transition letters (for ages 16, 17, 18 and 21) from the Community Health Automated Medicaid Processing System (CHAMPS) database to the CSHCS database system. This phase is currently on hold due to anticipated database changes and funding limitations. Transition reports will continue to be manually created for LHDs to guide their health care transition activities.
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 was to implement a marketing plan to promote Got Transition’s health professional courses to providers across the state. CSHCS convened with key team members from Got Transition in FY 2022. Got Transition is in the process of updating the professional course and obtaining an updated Continuing Education Unit (CEU) certification. Plans to move forward with this strategy will commence once the courses are updated.
The second strategy was to continue to support the HRSA CYE grant partners to improve transition for children and youth with epilepsy in rural communities. In FY 2022, one-on-one calls were scheduled with each CYE clinic partner to discuss and support the systematic integration of administering health care transition readiness assessments within their clinic. While assessments were completed with a varying level of consistency, providers expressed a genuine interest in putting health care transition strategies, including assessments, into practice. The cross-site provider survey indicated a considerable increase in the number of completed transition readiness assessments by more than 300% from FY 2020 to FY 2021. Both pediatric and adult providers continue to face challenges with the integration of the health care transition assessment due to competing priorities and assessments.
The third strategy for this objective was to identify opportunities to improve transition to adult health care for patients with sickle cell disease. In October 2021, CSHCS expanded enrollment eligibility to include individuals aged 21 and over with sickle cell disease. This expansion resulted in the CSHCS enrollment of 406 adults with sickle cell disease during FY 2022. The transition specialist and Special Projects Coordinator in the Hemoglobinopathy Quality Improvement Program have continued work towards completion of a sickle cell disease clinic toolkit. The goal of the toolkit is to provide health care transition guidance and sickle cell disease specific resources. Work will continue in FY 2023 and FY 2024 to finalize the clinic toolkit and commence a pilot project for implementation of the toolkit with sickle cell clinics.
The final strategy for this objective was for health care transition to be included in the Michigan Model for Secondary Transition. During this grant cycle, the transition specialist served as a member of the Michigan Interagency Transition Taskforce (MITT). This taskforce is a collaboration with representation from the Department of Education, Disability Rights Michigan, Developmental Disabilities Council, Department of Labor and Economic Opportunity, the Arc Michigan, Michigan Alliance for Families, Statewide Independent Living Council, Wayne State University Developmental Disabilities Institute, Statewide Autism Resources and Training (START), Michigan Transition Services Association, and Michigan Disability Rights Coalition. The taskforce continues to collaborate with the National Technical Assistance Center on Transition on the completion of the Michigan State Model for Secondary Transition. In FY 2022, the taskforce finalized objectives, a system flow of services, and fidelity checklist that included a section on health care transition. The transition specialist was also an integral part of creating a Youth Engagement Subcommittee to embed youth voice into the Michigan Model for Secondary Transition. Subcommittee members include representation from the Developmental Disabilities Council, Statewide Independent Living Council, and the Family Center youth consultant. Plans for FY 2023 include integrating youth voice into the Michigan State Model for Secondary Education and implementation of a pilot program.
Objective C: By 2025, increase by 10% the number of partner organizations that reach the next level on the Got Transition “Current Assessment of Health Care Transition Activities.”
To improve the ability to measure improvements in transition related activities, CSHCS’ first strategy was to devise a plan to adopt and implement the Current Assessment of Health Care Transition Activities with CSHCS partners. With the guidance and approval of Got Transition, the health care transition assessment was revised to accurately depict transition activities within the LHDs. CSHCS further collaborated with Michigan State University-Institute for Health Policy (MSU-IHP) to create an electronic version of the assessment survey in Qualtrics, distribute the assessment to LHDs and analyze the results. In FY 2022 the electronic survey was created and sent to all 45 LHDs. It generated 100% participation. Activities in FY 2023 will include analysis of the baseline data and providing an individualized report to each LHD.
The Current Assessment of Health Care Transition Activities was also implemented with clinical partners at the annual CYE meeting. CSHCS continues to support the HRSA CYE grant partners in this second strategy. Each year, the CYE grant partners host a meeting to discuss upcoming components of the grant, hear from an epilepsy panel which includes adolescents with epilepsy and their parents, and share best practices identified in their individual projects. Each year partners complete the annual assessment and progress is monitored. Analysis of the data reflected a 53% increase in the number of level three and four (with four being the highest rating) scores that were obtained from the annual transition assessment from FY 2020 to FY 2022.
Medical Care and Treatment for CSHCN (FY 2022 Annual Report)
Michigan’s SPM for the CYSHCN population measures the percentage of CYSHCN enrolled in Children’s Special Health Care Services (CSHCS) that receive timely medical care and treatment without difficulty. The measure addresses Michigan’s 2021-2025 state priority need to “Ensure children with special health care needs have access to continuous health coverage, all benefits they are eligible to receive, and relevant care where they live and learn.” CSHCS utilizes two survey questions from the Consumer Assessment of Healthcare Providers and Systems (CAHPS) to measure the “Percent of CYSHCN enrolled in CSHCS that receive timely medical care and treatment without difficulty” (SPM 4). In FY 2022, the result was 88.4%.
The mission of CSHCS is to find, diagnose, and treat children who have chronic illnesses or disabling conditions, enabling them to achieve improved health outcomes and enhanced quality of life. CSHCS accomplishes this mission by reducing barriers to medical care and treatment and minimizing financial burden for families. CSHCS covered an average of 41,000 individuals each month in FY 2022. Enrollees had at least one of the more than 2,500 qualifying diagnoses with 34.6% of enrollees having more than one severe, chronic health condition. Accomplishments in FY 2022 included the successful expansion of CSHCS eligibility to adults with sickle cell disease, the Expanding Equity in CSHCS Project that included data analysis for health disparities, expansion of Children’s Multi-Disciplinary Specialty (CMDS) clinics, continued work towards the respite program redesign, and progress establishing a Children with Medical Complexity (CMC) benefit.
Key CSHCS partners include the National Care Coordination Academy, Family Voices, the MDHHS Lifecourse Epidemiology and Genomics Division (LEGD), Bureau of Children’s Coordinated Health Policy and Services (BCCHPS), Michigan State University-Institute for Health Policy (MSU-IHP), Medicaid Health Plans (MHPs) and Local Health Departments (LHDs). Approximately 39% of Michigan’s Title V FFY 2022 expenditures in FY 2022 were for direct medical care and treatment.
Ongoing response to the COVID-19 pandemic continued to be a challenge for CSHCS. LHD partners have diverted program staff and other resources to operate vaccination clinics and complete contact tracing, resulting in fewer staff members dedicated to CSHCS families. This ongoing response coupled with pressure on LHDs within local communities has resulted in a high staff turnover within LHDs.
The first strategy was to continue enrollment of CYSHCN into the CSHCS medical care and treatment benefit. CSHCS provides access to specialty care for a client’s qualifying condition and reduces financial burden for families. Clients that are medically eligible for CSHCS and have active Medicaid are automatically enrolled. Enrollment into CSHCS benefits clients with Medicaid by increasing access to care coordination and case management services. To further assist with enrollment, CSHCS partners with LHDs, hospitals, specialists, and MHPs to submit medical reports for CSHCS review. CSHCS and Medicaid also implemented policies to support continued eligibility for enrollees in their respective programs during the COVID-19 pandemic.
NEMT assisted clients in accessing specialty care by covering qualifying travel expenses. The 2022 CAHPS survey indicated 7.6% of respondents requested transportation assistance from CSHCS. When asked to rate if the assistance met the needs of their family, 86.3% of respondents shared that the assistance “Usually” or “Always” met their needs. In FY 2022, CSHCS processed $130,000 in claims to commercial vendors and $1,078,932 to clients/families.
The second strategy was to expand the capacity of specialty clinics to support the delivery of patient-centered, family-centered care through CMDS clinics. These clinics offer a highly coordinated, interdisciplinary approach to the management of specified complex medical diagnoses, which include teams consisting of a specialist/pediatrician, nurse, social worker, and dietician. CSHCS supports over 30 CMDS clinics in seven tertiary care and teaching hospitals. In FY21, CMDS clinics reported 3,681 client encounters with more than $436,000 of enhanced reimbursement provided to clinics. In FY 2022, five additional CMDS clinics were added to the CSHCS network.
In October 2021, Michigan expanded CSHCS eligibility to include adults with sickle cell disease (SCD) with the goal of improving health outcomes and reducing health disparities for this population. In FY 2022, this expansion resulted in the CSHCS enrollment of 406 adults. Through a partnership with the Michigan Sickle Cell Data Collection (MiSCDC) program at Michigan Medicine and MDHHS LEGD, CSHCS is working to identify additional individuals eligible for CSHCS. The MiSCDC program uses multiple population-level data sources to identify people with SCD in Michigan. In FY 2023, CSHCS will work with MiSCDC to analyze the data and outreach to potential eligible individuals.
The first strategy was to continue building a coordinated and systematic approach to family engagement which is accomplished through the work of the Family Center. The Family Center is a statewide, parent-directed center within CSHCS that offers emotional support, information, and connections to community resources for families of CYSHCN. In FY 2022, the Family Center fielded 8,443 Family Phone Line calls and parent consultants assisted 638 individuals.
In addition to the parent consultant staff, the Family Center team also includes a youth consultant who helps to embed youth voice into the CSHCS program and assist with outreach efforts. The youth consultant serves on a variety of committees including the CYE advisory committee, the Michigan Interagency Transition Team Youth subcommittee, and the Youth Engagement Program planning committee. The youth consultant also co-presented on health care transition at the Adolescent Health Initiative Conference in FY 2022.
The Family Center continued to facilitate quarterly meetings with the Family Leadership Network (FLN) in collaboration with the MI Family to Family Health Information Center to obtain diverse perspectives from families of CYSHCN. The FLN is composed of up to two FLN members from each of Michigan’s 10 Prosperity Regions to provide caregiver input on programs and special projects.
The Family Center also offered Parent Connect Calls and trainings in a virtual environment during this grant cycle. The Parent Mentor training was completed by 90 parents, and 39 parents were matched with mentors. Parent Connect Calls provided caregivers of CYSHCN with resources, support, and an opportunity to discuss the most pressing issues for caregivers of CYSHCN. In FY 2022, The Family Center provided 12 Parent Connect Calls which reached 91 caregivers.
To promote education and advocacy, the Family Center continued to offer scholarships for camp and conferences to CYSHCN families and grant opportunities to LHDs. Conference scholarships were available for parents/youth to attend a conference related to the CYSHCN’s diagnosis. In FY 2022, 16 conference scholarships were granted. Summer camp scholarships provide up to $250 for CYSHCN to attend a Michigan licensed summer camp. In FY 2022, 69 camp scholarships were awarded, which is a 57% increase compared to FY 2021. The Family Center also provided a grant opportunity for LHDs to increase family support, knowledge, and advocacy skills through implementation of a family-centered support activity for families of CYSHCN. In FY 2022, four LHDs were awarded a total of $17,500.
The second strategy was to implement a comprehensive outreach plan to improve awareness of CSHCS among providers, partners, and families. The Family Center continued to host Professional Connect Calls to share important information, facilitate discussions among providers, and brainstorm opportunities for partnership to support families of CYSHCN. In FY 2022, the Family Center hosted eight Professional Connect Calls reaching 144 professionals. CSHCS also launched a revised, more user-friendly website with expanded and updated content. Additionally, an Outreach and Engagement Analyst position was created and filled to assist with CSHCS outreach, employee engagement, and staff development. Movement on this strategy will continue in FY 2023.
The final strategy was to maintain a competent workforce to assist families in accessing care. In FY 2022, the CSHCS annual training for LHDS and MHPs focused on sickle cell disease. This virtual training had a robust agenda that included specialist providers detailing the treatment guidelines and sickle cell disease process across the lifespan; a nurse practitioner who shared motivational interviewing techniques for use in the process of transitioning care; and a family panel which provided both a parent and teen perspective on living with sickle cell disease. Post meeting surveys indicated 99% of survey respondents agreed or strongly agreed that the training improved their knowledge of the complexities of caring for individuals with sickle cell disease. CSHCS collaborates with MSU-IHP for this training.
CSHCS continued to facilitate regularly scheduled meetings with LHDs and MHPs to discuss program updates, provide education, and offer opportunities for input into the CSHCS program. Two collaborative calls between MHPs and LHDs were hosted by CSHCS during this grant cycle.
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 CSHCS team continued to develop a model of care for Michigan’s CMC with a goal of improving health outcomes and quality of life while minimizing hospitalizations and reducing health care costs. CSHCS worked with the Division of Vital Records and Health Statistics to apply the Pediatric Complex Chronic Conditions Classification System Version 2 (CCCv2) algorithm to Michigan’s encounter data to quantify the number of potential eligible beneficiaries for the CMC benefit. The data are being utilized to determine cost impacts and potential saving opportunities. CSHCS consulted with Centers for Medicare and Medicaid (CMS) to better understand the newly released requirements associated with the ACE Kids Act Health Home and how these differed from the ACA Sec. 2703 health home requirements. CSHCS presented planning documents to leadership and engaged with both Medicaid Policy and Medicaid Actuarial to better understand processes and information needed to proceed with benefit development.
In FY 2022, CSHCS completed its participation in the National Care Coordination Academy. CSHCS was also invited to participate in Project ACCELERATE (Advancing Care Coordination through Evidence; Leveraging Existing Relationships Around Transforming PracticE). This project brings together stakeholders including Medicaid Medical Directors, MCH-Title V Directors, and patient advocates to review the latest PCORI-supported findings for enhanced care coordination for CYSHCN.
The second strategy included gathering feedback from provider stakeholders and developing a comprehensive program evaluation plan. In 2019, a CSHCS collaborative workgroup comprised of representatives from the CSHCS Advisory Committee (CAC) was established to provide guidance on the development, process, sampling, and methodology for a CSHCS provider survey. Feedback was obtained utilizing a multi-staged approach that included interviews with executives and an electronic provider survey. The survey was completed in 2020 and findings were compiled and analyzed in 2021. In FY 2022, CSHCS identified findings that will support future MHP contract changes. For example, the provider survey revealed that when a respondent rated prior authorizations for CSHCS services/benefits as “not at all easy,” 81% of those respondents indicated it was related to MHPs. As a result of the survey findings, CSHCS is examining how to utilize the MHP contract to improve how services are provided to clients and to improve the experience of CSHCS providers in working with MHPs. In response to individual provider survey responses, OMA physicians directly followed-up with providers to address concerns and answer questions.
Building on work from previous years, CSHCS continued the development of a comprehensive evaluation plan. The goal of the plan is to measure CSHCS’s capacity and ability to provide effective, efficient, and high-quality services to clients. In FY 2022, CSHCS identified metrics that aligned with established evaluation questions. Additional data analysis will occur in FY 2023.
The third strategy was for CSHCS families to receive high-quality, family-centered care coordination in a well-functioning system. This strategy is accomplished through site visits with CMDS Clinics and MHPs, and accreditation visits for LHDs. CSHCS conducted five virtual CMDS clinic site visits in FY 2022. Site visits confirmed that CMDS clinics excelled in expanding the staffing structure of the provider specialty network to meet families’ needs and providing patient/family education. The most frequent recommendations to the clinics were related to transition to adult providers, documentation, and recruitment of specialty staff, such as dieticians. CSHCS participated in MHP site visits with Managed Care Plan division staff, OMA, and other program areas across MDHHS. In FY 2022, CSHCS visited with nine MHPs with a focus on case management and care coordination received by CSHCS enrollees. LHD accreditation visits continued to be paused through FY 2022 due to the COVID-19 pandemic and are anticipated to resume in FY 2023.
The final strategy for this objective is for CSHCS families to receive equitable care by applying a health equity lens to all activities within the CSHCS Division. The CSHCS management team makes a concerted effort to apply a health equity lens in all efforts to review program operations. For instance, a review of challenges experienced by young adults transitioning to adult care with a health equity lens led to the development of a proposal to expand CSHCS program eligibility to young adults up to age 26. Challenges with transition to adult care are more acutely experienced by young adults from lower income families and from historically underserved populations, and this proposal to expand eligibility is in response to this identified inequity. In addition, the CSHCS Health Equity, Diversity, and Inclusion workgroup seeks opportunities to educate and engage CSHCS staff and stakeholders to identify health inequities, remove institutional barriers, and advance equitable policies and practices to achieve reduction in health disparities for CYSHCN. The Workforce Development subcommittee creates monthly Health & Cultural Awareness bulletins that highlight rare diseases and provide education on diversity and inclusion topics. These emails are shared with the Division and LHDs. In FY 2022, the workgroup oversaw the revision of two Division brochures to ensure ADA compliance. This work will continue in FY 2023.
To Top
Narrative Search