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 CSHCS population, Title V funds are primarily used to support medical care and treatment for CSHCN. Other federal funds that support CSHCS include a HRSA Epilepsy grant and Medicaid. Key partners include Medicaid, 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, Developmental Disabilities Council (DDC), the Developmental Disabilities Institute at Wayne State University, and Michigan Family Voices.

At the local level, in addition to direct funding from CSHCS, LHDs can elect to expend additional LMCH funds for CSHCN. Three LHDs selected NPM 12 (transition) expending 0.9% of LMCH funds to identify enrollees of transition age and provide education and plans of care for gap-filling transition services. Additionally, three LHDs expended 1.2% of 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 social media activities.

Michigan’s approach to improving the health and well-being of CSHCN 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 new five-year cycle, the CSHCS program will also start to work on bullying prevention for CSHCS.

According to the 2017-2018 National Survey of Children’s Health (NSCH), 19.8% of Michigan’s children have special health care needs, as compared to the national average of 18.5%. However, more than a third of non-Hispanic Black children (34.5%) were identified with a special health care need. Additionally, only 15.9% of Michigan parents of children with special health care needs report that their children receive care in a well-functioning system.

Transition (FY 2019 Annual Report)

The 2010 needs assessment found that 41.2% of CSHCN received the services needed for transition to adult health care, which falls below the Healthy People 2020 target. In response, Michigan adopted “Percent of adolescents with and without special health care needs who received services necessary to make transitions to adult health care” (NPM 12) as a priority focus. Building on 2018, three objectives were identified to increase awareness of transition. The strategies associated with these objectives target local health departments (LHDs), medical providers, adolescents and families. In 2019 a strategic plan was created to improve transition services across the state. Provisions were incorporated into Medicaid Health Plan (MHP) contract language to better align with Got Transition’s Six Core Elements of Transition. An AMCHP replication project was completed that incorporated Got Transition’s Six Core Elements into a school-based health center resulting in a 36% improvement in the delivery of transition services. Finally, CSHCS received a $400,000 grant from HRSA to continue transition work with Children and Youth with Epilepsy (CYE).

Challenges included limited information technology resources and slowed implementation of some strategies. Successful implementation of other strategies was accomplished through collaboration with national and state MCH programs. CSHCS worked with MHPs, LHDs, the MDHHS Child and Adolescent Health (CAHC) section, HRSA-funded CYE grant participants, Got Transition, AMCHP’s Replication Grant team, and other MCH-funded organizations such as Florida Health and Transition Services (HATS). 

Objective A: By 2020, increase the number of youths who have a plan of care that includes transition planning, beginning at age 14, by 4.1%.

The first strategy to achieve this objective is to provide transition technical assistance to LHDs. Technical assistance includes an orientation transition webinar for ongoing staff education; monitoring transition services provided through LHDs; and technical assistance workshops addressing transition and self-determination. CSHCS assists LHDs as they work with CYSHCN who receive private duty nursing and helps to facilitate the transition to a waiver program to ensure continued service availability for families. The CSHCS transition specialist serves on the Michigan Interagency Transition Taskforce to represent the CYSHCN population and distributes new information to LHDs to improve their knowledge and services.

The transition specialist also monitors transition services billed by LHDs through the CSHCS Healthcare Automated Support Services system. The number of unduplicated clients receiving care coordination/case management services increased from 10,669 in 2017 to 11,523 in 2019. Care coordination/case management services that included health care transition increased from 8% in 2017 to 12.8% 2019.

The second strategy was to create an infrastructure of automated monthly letters to CSHCS enrollees. Currently, clients/families receive automatically generated letters between the ages of 16 and 21. The letters highlight important topics and encourage clients/families to reach out to LHDs. To align with national recommendations, the transition specialist is working to start the automated letters at age 14. A committee was convened with LHD representatives, parents of youth with special health care needs, the Family Center Youth Consultant, and internal staff to establish a 14-year-old letter. Work continues to finalize and integrate the letter and establish a report to notify LHDs when their clients receive letters.

The third strategy for this objective was to utilize CC360 to improve use of shared care plans across partners such as LHDs, MHPs, Community Mental Health (CMH), the foster care system, and others. CC360 is an integrated care management system designed to improve the coordination of services delivered by multiple entities. A committee evaluated opportunities for LHDs to use CC360. The committee reviewed the data use agreement process, interviewed LHD health officers regarding their electronic medical record, and convened with other MDHHS leaders regarding their experience with CC360. This exploratory process has resulted in better-informed decision making.  While CC360 offers potential to LHDs, in its current state it restricts access to dually enrolled Medicaid/CSHCS enrollees. As a result, CSHCS will continue to explore other systems, like those offered through the Health Information Networks which offer tools for referral sharing and shared plans of care.

For the final strategy, CSHCS continues to utilize the MDHHS Data Warehouse to track when CSHCS clients transfer care from a pediatric to an adult provider. Through a contract with the University of Michigan’s Child Health Evaluation and Research (CHEAR) unit, CHEAR developed an Evidence-informed Strategy Measure (ESM) to provide ongoing analysis and support related to the CSHCS program. 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) the CSHCS database; 2) the CHAMPS (Medicaid Claims) database; and 3) University of Michigan’s provider database which includes providers statewide. Use of this measure assists the CSHCS program in knowing what percentage of clients completed their transfer of care by the age of 18. In 2019, University of Michigan CHEAR reported that 46.7% of targeted clients had transferred their care from a pediatric provider to an adult provider. This percentage fell slightly from 2017. The decrease can be explained, in part, by a change in age by which transition should be completed. In 2017, the University of Michigan health system was targeting 18 years for transition completion and in 2019, the targeted age was 21 years. 

Objective B: By 2020, increase the number of youth and families by 50 that are aware of and understand the transition to adulthood process.

The first and second strategy of this objective were combined for more efficient implementation. In 2019, CSHCS established transition services within MDHHS school-based and school-linked health centers across the state. MDHHS has a network of more than 100 Child and Adolescent Health Centers (CAHCs) throughout Michigan. These centers provide services to both CSHCS and non-CSHCS students. Programs are staffed by mid-level practitioners, social workers and medical professionals and deliver services focusing on primary, preventive and early intervention health care. Clinic staff work collaboratively with students, parents, school personnel, LHDs, and the human service community to assure that students have what they need to be healthy.

Thanks to a Best Practices Technical Assistance Replication Project through the Association of Maternal and Child Health Programs (AMCHP), Michigan created a project to replicate components of the “Using the Six Core Elements of Health Care Transition in Medicaid Managed Care” project from Got Transition to advance transition work in the one of its school-based health centers.

The project began in October 2018 with a finalized work plan; an established implementation team; and an established administrative team with representation from Got Transition, Health Department of Northwest Michigan, and Blue Devil Wellness Center. Utilizing Got Transition experts, the “Current Assessment of Health Care Transition Activities” survey was completed. Identified areas of strength were spending time alone with students and providing students with information regarding adult doctors. Additionally, elements that could result in the most improvement in transition activities were identified. The transition policy, “Finding an Adult Doctor” flyer, medical care plan and summary, and the transition readiness assessment were customized and presented to the Youth Advisory Committee. Got Transition assisted with establishing procedures for implementing the customized documents.

Data collection began at the end of February 2019. Clinic staff worked with the health occupations instructor to secure a four-hour block of class time to provide education on transition, complete the Medical Care Plan and Summary, complete transition readiness assessments and review the Online Transition to Adulthood course. As a result, 48 students piloted the customized documents and provided feedback on the Online Transition to Adulthood module.

As part of the pilot, the online adolescent transition course was shared with participating students. The online adolescent transition course introduces youth to the importance of transitioning from pediatric to adult providers. The course was reviewed by the Family Center youth consultant and 48 junior and senior students from a school-based health center pilot. When surveyed, 80% of respondents indicated they learned something new from completing the online module. Students reported concerns about the overall length of the course and the length of section videos. Work will continue in 2020 with edits to the course, an official launch and implementation of a marketing plan.

 Many lessons were learned throughout the pilot, including:

• Transition planning in schools needs to occur earlier in the school year to allow time for intervention.
• Whenever possible, clinic staff should seek relationships with teachers to coordinate education within the classroom.
• Clinics should utilize the validated transition readiness assessments provided by Got Transition.

In June 2019, Got Transition staff completed the final “Current Assessment of Health Care Transition Activities” survey again which demonstrated a 36% improvement in scores. The clinic demonstrated improvement in establishing a transition policy and engaging youth in the transition process. 

The results of the pilot were shared with stakeholders including the MDHHS CSHCS division, the CSHCS Advisory Committee, the CAHC leadership team and the CAHC clinic coordinators. The transition specialist utilized the pilot experience to create a toolkit for implementing transition services in school-based health centers. The transition specialist and Family Center youth consultant presented at the CAHC Summer Conference highlighting the project, providing education to CAHC coordinators, and asking for volunteers for a future learning collaborative. In addition, the pilot was featured in a poster presentation at the 2019 AMCHP Conference. Work on this strategy will continue with the goal of replicating this project in diverse clinic types and geographic locations. Once implemented and evaluated, staff hopes to submit to AMCHP for consideration as a ‘promising practice.’

In 2019, the transition specialist also collaborated with Michigan Family Voices to provide a presentation to 23 youth with special health care needs and their families.

Objective C: Increase provider awareness and understanding of the transition to adulthood process by 25% through the establishment and offering of a free online Medical Transition course.

The first strategy was to review University of Florida’s “Health Care Transition Training for Health Care Professionals” (through Florida HATS) and establish a plan for replicating a similar model in Michigan. The University of Florida’s training is based on evidence-based materials from Got Transition and includes coding and reimbursement information and condition-specific tools from the American College of Physicians. In 2019, the transition specialist established a relationship with the Michigan Chapter of the American Academy of Pediatrics to promote the course. The transition specialist reviewed each course and completed a review of other resources including programs from Got Transition and Vermont Family Network. A vendor was identified to host the courses and provide continuing education credits. Work will continue in FY2020.

The second strategy was accomplished through the HRSA CYE grant. The goal of Michigan’s CYE project is to improve access to quality health care for CYE. Using a quality improvement learning collaborative framework, primary and specialty care project clinic sites incorporated best practice transition infrastructure. The project will provide training and education, community outreach and user-friendly technologies to help clinic sites develop initiatives that support self-management, care coordination, and transition of adolescents to adult providers. The cumulative effect of these initiatives impacts the system of care and results in transition services being provided in a standardized way. According to clinic site assessment using the Got Transition “Current Assessment of Health Care Transition Activities,” 100% of participating project clinical sites have implemented at least one element of a transition infrastructure, which meets the goal for the project.

CYE grant partners reached out to the Michigan School Health Coordinators network to distribute Got Transition materials and messaging. The Family Center and Epilepsy Foundation of Michigan staff collaborated to conduct 39 community outreach events and trained 72 schools. Project training efforts reached 10,750 individuals including 347 local public health staff, 1,299 parents, 4,224 school staff, 1,735 health professionals, 3,022 general community members, and 92 youth.

Throughout the learning collaborative, teams received health care transition training. The Project Evaluator developed a tool to guide teams through a process of implementation. The tool focused on health care transition policy, readiness assessment, and transfer of care. The project’s health care transition AIM statement was, “By August 2019, 50% of the sites will reach a level 3 on at least 3 of the core elements”. In November of 2018, the AIM statement was met with 71% of clinics achieving at least a score of 3 on at least 3 of the Got Transition Six Core Elements.

Other quality improvement activities for the CYE grant focused on consistently providing time alone between adolescent patients and providers. While this is common practice for primary care providers, specialists were not offering time alone. The youth consultant shared her own experience with not having time alone with her specialist. Hearing this perspective created a better understanding of the impact this has on successful health care transition. As a result, specialists are looking for opportunities to offer time alone with their adolescent patients. The project’s success resulted in Michigan receiving a 4-year Transforming Health Care for Children and Youth with Epilepsy Grant in August of 2019.

Medical Care and Treatment (FY 2019 Annual Report)

Michigan’s SPM for the CYSHCN population measures the percent of CYSHCN enrolled in Children’s Special Health Care Services (CSHCS) that receive timely medical care and treatment without difficulty. This measure is aimed at addressing Michigan’s 2015-2020 state priority need to reduce barriers, improve access, and increase the availability of health services for all populations. CSHCS was created to find, diagnose, and treat children who have chronic illnesses or disabling conditions. The mission of CSHCS is to enable children to have improved health outcomes and enhanced quality of life.

CSHCS accomplishes this goal by reducing barriers to medical care and treatment and minimizing financial burden for families. Approximately 36% of Michigan’s Title V funding is used for medical care and treatment for CSHCN. CSHCS covers specialty care, pharmaceuticals, and treatment costs related to a client’s qualifying condition. A review of responses to two survey questions used by 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) showed improvement from 88.1% in 2016 to 88.9% in 2019. Respondents gave top box ratings of ‘usually’ or ‘always’ to questions related to getting care and treatment when needed.

Challenges for CSHCS include responding to rising pharmaceutical costs, a lack of information technology resources, and provider shortages. CSHCS’s response to these challenges is to create cost containment strategies, explore telemedicine options, and develop an eligibility determination process for high-cost drugs.

Objective A: By 2020 reduce barriers to medical care and treatment by minimizing financial barriers from the increased medical services associated with the child’s special need, as measured by a 5% increase in the Insurance Premium Benefit Assistance Program.

The first strategy is to provide payment assistance for specialty care and treatment related to a qualifying condition. CSHCS continues to enroll CYSHCN in the medical care and treatment benefit. CSHCS is the payer of last resort and requires that families follow their primary and secondary insurance rules. Families that may be eligible for Medicaid are required to enroll. Those who do qualify for Medicaid are moved into a Medicaid Health Plan (MHP) if deemed appropriate.

CSHCS medical care and treatment benefit covers more than 48,000 individuals annually with more than 2,700 qualifying diagnoses. Approximately 26% of enrollees have more than one severe, chronic health condition. Families receiving the CSHCS medical care and treatment benefit receive care coordination through LHDs, which provided more than 19,000 care coordination/case management services last year.

Transportation concerns increase stress levels for families of CYSHCN. The 2019 CAHPS composite scores regarding transportation indicated 11.3% of respondents requested transportation assistance from CSHCS. When asked to rate if the assistance met the needs of their family, 78.7% of respondents shared that the assistance “Usually” or “Always” met the needs. LHDs requested transportation assistance for more than 1,000 unduplicated clients in FY 2019. CSHCS provided $671,000 to vendors to provide transportation for CSHCS clients and $389,000 to families to support transportation for medical needs. These funds primarily impact Title V families, as Medicaid or MHP families receive the Medicaid transportation benefit.

The Family Center for Youth with Special Health Care Needs (Family Center) alleviates financial burden associated with ongoing education through two scholarships. The summer camp scholarship provides up to $250 for CYSHCN to attend a licensed Michigan summer camp. In 2019, 58 summer camp scholarships were distributed. The conference scholarship is available for parents and/or youth aged 14-26. Families can attend a conference to learn about medical advances and how to advocate for their child. Conferences provide the opportunity for parents and youth to connect with their peers, increasing the opportunity for social support. Scholarships are limited to one scholarship every two years per family. In 2019, 23 conference scholarships were distributed.

The second strategy relates to the Insurance Premium Payment Assistance Benefit (IPPAB). CSHCS offers IPPAB to eligible families who lack adequate financial resources to pay for the portion of their family’s private or employer-based insurance premium specific to the eligible child. The IPPAB provides financial support to reactivate or maintain the family’s private coverage. In 2019, the number of families qualified for the IPPAB increased to 152, surpassing the stated objective of a 5% increase. The strategy encompasses a study that was initiated in conjunction with the University of Michigan’s Child Health Evaluation and Research Center (CHEAR) and the Commonwealth Fund. The study evaluates the numbers and characteristics of children receiving IPPAB, as well as its cost effectiveness. The project assesses predictors of program cost-effectiveness, identifies program benefits/disadvantages, and evaluates potential for expansion. The study is still in process.

The third strategy is for CSHCS to assess health disparities and inequalities for CYSHCN. In 2019, an initiative to compile data from multiple resources resulted in the creation of the “MI CSHCN Health Data Updates” report. The draft report includes programmatic, demographic, health status, socioeconomic, and health care delivery indicators. The report was utilized in the Title V five-year needs assessment and is being used to identify health disparities and inequalities for CYSHCN across the state. The report provides context and baseline information for ongoing work related to health equity and social determinants of health.

Objective B: By 2020, improve access to medical care and treatment by improving the systems of care for CSHCN clients, as measured by the CMDS patient satisfaction survey.

The first strategy is to improve the quality and effectiveness of CMDS clinics through the implementation of site reviews. CSHCS supports 27 CMDS clinics associated with seven different tertiary-care or university-based health systems. CMDS clinic types include: cleft lip/palate/facial, cystic fibrosis, diabetes/endocrinology, multiple handicap/disability (including myelodysplasia), pulmonary/severe asthma, myelodysplasia/spina bifida, hematology/oncology, centers for bleeding and clotting disorders (hemophilia), biochemical genetics, gastroenterology/nutritional deficiencies (CHIRP and liver clinics), systematic inflammation clinic, cardiology, and neurology. In 2018, CMDS clinics were reimbursed $475,398.17 related to 3,908 client encounters. In 2019, staff piloted a site review tool and completed site visits at three clinics. Site visits have been scheduled for all clinics within a four-year cycle. The site visit team includes an Office of Medical Affairs (OMA) physician consultant, a Family Center representative, clinic development analyst, and LHD accreditation specialist. Clinic sites are evaluated on core staffing, shared comprehensive records, coordinated approach to meet multidisciplinary needs, referrals to other professionals, education for treatment/health promotion/disease prevention, family involvement, transition activities, plans of care, appropriate use of visit levels (initial comprehensive evaluation and basic/ongoing comprehensive evaluation), and appropriate billing. Additional focus is placed on health equity and transition services.

In 2019, working with the National Center for Care Coordination Technical Assistance, CSHCS laid groundwork for the adoption of the Pediatric Integrated Care Survey Tool. The survey, administered through Survey Monkey, is designed to be short and easy for clients to complete on their smart phones, at their convenience. The survey measures family experiences of care integration. In 2019, staff worked with the MDHHS compliance officer to determine the appropriate amount of demographic information to request which will enable stratification of data after collection. The survey will be implemented in 2020.

In 2019, CSHCS initiated a hospital focus group with Michigan’s three large children’s hospitals. The goal was to obtain feedback from the pediatric hospital systems on the CSHCS program and the systems of care for CYSHCN. The site visits provided CSHCS leadership an opportunity to educate hospital leaders on CMDS clinics and other CSHCS components and to garner feedback related to challenges hospitals face in addressing special health care needs of children. The site visits have led to improved relationships with key partners. This work continues into 2020.

In conjunction with the five-year needs assessment and the passing of the ACE for Kids act, CSHCS seeks to improve the systems of care for CYSHCN by evaluating the role palliative care plays in improving quality of life and containing costs. An internal committee is exploring options related to reimbursement and service delivery methods in order to assess the need and feasibility of offering a palliative care benefit through CSHCS. CSHCS is considering factors such as program components, staffing requirements, and reimbursement methodologies to determine what would result in cost savings and improved quality of life for clients/families. To assist in this process, CSHCS entered a partnership with University of Michigan’s Partners for Children, a program that provides palliative care to chronically ill, severely limited children within a 100-mile radius of the University of Michigan. The goal of this partnership is to collect data to inform future payment and service models. This work will continue in 2020.

Lastly, CSHCS has adopted a quality improvement strategy which includes site visits to MHPs. As part of these visits, CSHCS staff will assess the quality of care offered to CSHCS enrollees through MHPs. In addition to CSHCS representatives, site visits are attended by Managed Care Plan division staff, Office of Medical Affairs (OMA) physician staff, and others depending on the focus for the year. In 2019, the team visited all 11 MHPS to discuss enrollment trends among each MHP’s child and adolescent population (<21 years of age). Specific contract compliance activities related to durable medical equipment have been added to reviews. In the future, CSHCS will work with the Quality Improvement and Program Development Section within the Bureau of Medicaid Care Management and Customer Service to apply a health equity lens to CSHCS clients receiving services.

Objective C: By 2020, increase the availability of health services, particularly in underserved regions, through the utilization of telemedicine and community-based services.

The first strategy is to empower LHDs to assist their clients. This is accomplished through ongoing technical assistance and education. CSHCS provides significant support and training to LHDs. During the grant period, CSHCS provided 15 technical assistance sessions. In 2019, LHDs provided more than 19,000 direct care coordination and case management services to clients. Services covered advocacy, billing assistance, CSN Fund application assistance, community navigation, hospice, insurance premium payment benefit, outreach, plans of care, private duty nursing, respite, service delivery, transition and transportation.

The second strategy is to form a community collaborative to foster coordination to understand the dual systems that are impacting CYSHCN. In 2019, CSHCS convened an interagency collaboration working to reduce barriers to supports and services experienced by children and families with complex medical and developmental/behavioral needs. Approximately 5,000 CSHCS-enrolled clients receive care from community mental health. Currently the collaboration is working to create documents that can be shared to increase awareness in both systems. Work will continue in 2020.

The third strategy is to explore ways to incorporate telemedicine into patient care. A committee was formed to inform a proposal that would allow for CYE to pilot home-based services. Working with its regional telehealth network, the committee reviewed standards and best practices of other states specific to platforms, privacy, security, redundancy and protocols. Implementation of the proposal is expected to occur in 2020, with the promulgation of new Medicaid policy and enactment of new Michigan legislation that allows delivery of telemedicine services within the home environment.

The fourth strategy is to enroll feeding clinic providers and assist them as they work to implement their programs per policy. In 2019, DeVos Children’s Hospital and Michigan Medicine were enrolled as pediatric intensive feeding clinic programs. Clinics are being monitored to assure that they adhere to the bundled payment requirement. Work will continue in 2020.

Finally, in FY 2019 work continued on the implementation of the Family Leadership Network. Twenty parents were recruited (two from each prosperity region) and orientation sessions were held. The network provides guidance and feedback on programmatic issues, including planning and implementation of transition efforts, reviewing education materials, and helping design outreach strategies. This group ensures that CSHCS and Family Center work is patient-centered, culturally competent, educationally appropriate and inclusive.