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. By the end of FY 2018, CSHCS program enrollment had grown to nearly 37,000 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 that 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 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, and Michigan Family Voices.

Michigan’s approach to improving the health and well-being of children and youth with special health care needs focuses on reducing barriers, improving access, and increasing the availability of health services for all populations. 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.

According to the 2016-2017 National Survey of Children’s Health (NSCH), 20.5% of Michigan’s children have special health care needs, as compared to the national average of 18.8%. However, more than a third of non-Hispanic Black children (35.8%) were identified with a special health care need. Additionally, only 17.2% of Michigan parents of children with special health care needs report that their children receive care in a well-functioning system.

Transition (FY2018 Annual Report)

The 2010 needs assessment found that only 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. In FY2018, Michigan worked toward improving performance in this measure by maximizing internal collaboration and leveraging technology to support transition for adolescents.

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%.

During the reporting year, turnover in staffing resulted in a vacancy of the Transition Specialist position for approximately 10 months. In response to the staffing vacancy, the position was posted, candidates were identified, and interviews were completed. A replacement was hired and began on September 23, 2018. Despite the staff vacancy, CSHCS continued to move forward with transition efforts, laying groundwork for future collaborations with the Medicaid Health Plans (MHPs).

The CSHCS division, as part of the Bureau of Medicaid Care Management and Customer Service, participates in the Bureau’s quality improvement efforts. Michigan currently contracts with 11 health plans that enroll CSHCS beneficiaries and manage their care. In the spring of 2018, CSHCS began working to develop an annual site review process for MHPs, to learn more about CSHCS services offered through the MHPs to beneficiaries and to offer recommendations for improvement. As part of the process, staff undertook a review of the MHP contract. Areas of inquiry were identified based upon the contract language. The site review focused specifically on grievance and appeals; prior authorization processes; family centeredness; collaboration; and health care transition. Site reviews were initiated in the fall of FY 2018 and occurred with all 11 Medicaid health plans.

The objective’s second strategy focused on providing ongoing technical assistance to LHDs regarding health care transition services, including:

• What is health care transition and why is it important;
• How to assess transition needs of a CSHCN client and their family; 
• How to engage families in transition care planning; and
• How to track transition services. 

In June 2018, CSHCS staff traveled to Marquette (in Michigan’s Upper Peninsula) to provide a full-day training to LHD staff on transition, care coordination, case management, transportation, and CSHCS systems. The training was well attended by LHD staff from all six Upper Peninsula (UP) health departments, representing 15 of Michigan’s 83 counties. The Upper Peninsula Health Plan, Michigan’s only Medicaid Health Plan provider for the entire UP, was also in attendance. In total, 23 people participated in the training. Based upon the feedback provided, the event was deemed a success and will occur annually.

To address ongoing LHD training needs with the most relevant information and data, CSHCS also began updating its LHD orientation webinars. These webinars assure that new LHD staff have adequate knowledge concerning the CSHCS program and its various components by covering topics such as transition, transportation, care coordination/case management, Medicaid eligibility and family-centered care. New LHD hires are required to complete all training webinars within 90 days of hire. During FY 2018, webinars were updated to reflect current staff assignments, training materials and resources. A timetable for recording each training was distributed. Recordings are currently in process and are due to be completed and posted during FY 2019.

The objective’s third strategy continues to pursue technology to reduce burden on health professionals and families, while improving transition service delivery.  FY 2018 saw the second year of full implementation of the Children’s Healthcare Automated Support Services (CHASS) system. CHASS was developed to streamline billing, while improving care coordination and case management tracking. Through CHASS, LHDs submit their requests for transportation services, as well as identify the number of care coordination and case management services they have provided. The system uses this information to generate a billing invoice. It also provides important data to MDHHS related to service provision, including services specific to health care transition.

At the end of 2017, LHDs reported that 10,669 unduplicated clients received a case management/care coordination service. Among the unduplicated clients, 833 (8%) included a healthcare transition service. By the end of 2018, LHDs reported 11,004 unduplicated clients had received a case management/care coordination service.  Among the 2018 unduplicated clients, 10.6% included a healthcare transition service.

Also included in this technology strategy is the promotion and utilization of CareConnect 360 as a care planning tool for LHDs. CareConnect 360, an integrated data system, was designed to improve care coordination provided by multiple systems for shared Medicaid beneficiaries. Currently, the system is being utilized by MHPs, Community Mental Health Associations (CMH), foster care, and juvenile justice. The system facilitates cross-system information for providers to improve the coordination of services delivered by multiple entities. It also assists users with more effectively assessing and analyzing healthcare program data, which helps to improve decision-making processes, evaluate program results, and reduce costs for the purpose of improving health outcomes.

Local health departments have expressed interest in learning how to use CareConnect 360 and its integrated care planning functionality; however, they have also expressed some hesitancy in using the system due to concerns related to security and confidentiality. To address these concerns, CSHCS management sought assistance from Michigan State University’s Institute for Health Policy. During FY 2018, the Institute developed a proposal to pilot CareConnect 360 with two local health departments.  During the pilot, both training and process issues related to security and confidentiality will be addressed, to assure that LHDs are working within federal and state mandates when accessing and sharing protected health information. From these pilots, best practices in the form of procedures, protocols, tools, and resources will be developed.  Upon completion of the project, this information will be shared broadly with other LHDs.  Pilots are scheduled to begin in FY 2019.

Finally, under the technology 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 $40,000 to monitor transition work using an Evidence-informed Strategy Measure (ESM) that they developed and to provide ongoing analyses and support related to the CSHCS program. The measure provides data regarding the number of clients that successfully transfer care from a pediatric to an adult provider and is based upon selected groups that include: cardiology, endocrinology, gastroenterology, hematology-oncology, nephrology, neurology, pulmonology and rheumatology. This measure combines data from three separate sources: 1) the CSHCS database; 2) the CHAMPS (Medicaid Claims) database; and 3) University of Michigan provider database. These three databases provide information on CSHCS clients and the providers they see. 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 2017, University of Michigan CHEAR reported that 52.5% of targeted clients had transferred their care from a pediatric provider to an adult provider. In 2018, this percentage fell slightly to 49.9%. 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 2018, the targeted age was changed to 21 years.

Objective B: Increase youth and family awareness and understanding of the transition to adulthood process.

CSHCS is committed to a person-centered healthcare approach and to self-determination. Core to these concepts are individuals and families who are not merely healthcare recipients, but drivers of their own care. FY 2018 was spent preparing for and initiating pilots that serve as proof of concept to bigger, more impactful strategies.

The first strategy for this objective focused on youth and included hiring a youth consultant through the Family Center who helped guide the development of a transition course for adolescents. After several attempts at hiring a youth with special health care needs, a college student attending Albion College, who is diagnosed with epilepsy, was selected. Funded by the Children and Youth with Epilepsy (CYE) grant, the youth consultant provides consultation and serves on leadership advisory committees to assure that our transition efforts and the Family Center programming, including its Adolescent Transition Online Course, is both relevant and meaningful to today’s youth.

The objective’s second strategy will expand on the Adolescent Transition Online Course and incorporate it into a broader, more comprehensive approach. By the end of FY 2018, 102 individuals had viewed the course and 67 had completed it.

Using MDHHS’s well-defined network of Child and Adolescent Health Center (CAHC) programs located in or near schools, staff applied for, and received, funding to assist adolescents, both with and without special health care needs, in developing necessary skills to make health care transitions from pediatric to adult providers. The pilot project, located in a rural Michigan school clinic setting, employs a CQI framework to Got Transition’s six core elements, customizing them for delivery within the school-based clinic setting. The project also incorporates the Adolescent Transition Online Course as a tool that students can complete to learn more about the various components of health care transition.

During FY 2018, CSHCS developed a cross-sectional partnership with the CAHC program to apply for funds, complete an orientation with project partners, identify an interested school-clinic partner, and assure all required paperwork was in place. Project implementation with clinic staff and students began in FY 2019. If successful, this project holds great potential as a viable tool for interfacing with students and instilling transition skills in a way that assures their participation and buy in. It also provides a launching pad for future medical staff education with a group that is both proximate to and influential with students and parents.

The objective’s third strategy seeks to empower individuals and organizations through partnership so that they can better address needs relating to transitioning to adulthood.  In 2018, the Family Center joined forces with the Michigan Family to Family Health Information Center to create the Family Leadership Network (FLN).

FLN serves as a method to obtain diverse perspectives from families and to receive input on programs and projects. Membership includes up to two family representatives from each of the ten prosperity regions in Michigan; members must be the parent, guardian, or caregiver of a child or young adult with special health care needs. The purpose of FLN is to act as a link between Michigan Family to Family, the Family Center, and families of children and youth with special health care needs.

Through this network, the Family Center is working to assure geographical representation from all areas of the state. FLN identifies community supports and resources for the Michigan Family to Family Website, provides a regional voice, and makes recommendations regarding issues and priorities impacting Michigan Family to Family, the Family Center, and families in their region. Equally important, FLN helps to develop new family leaders and serves as a regional advocate for families, able to assist them in identifying needed resources from within their regions. Eleven FLN members completed the first trainings held on April 23 and April 24, 2018, and advanced to become official ambassadors. Through the ambassadors, CSHCS seeks to obtain rich, qualitative information which can help to inform the program and address regional differences.

In addition, CSCHS has partnered with Michigan Family Voices to provide two transition training opportunities for families. These educational workshops focus on a general overview of transition, tools and resources for parents with children who are transitioning and provide resources to attendees to help them to advocate for their children. These trainings were well received, as demonstrated by the high scores on program evaluations. MDHHS will continue to work to provide Michigan Family Voices the resources it needs to assist families in learning more about health care transition and how to assure transition occurs in a way that promotes continuity of care.

Objective C: Increase provider awareness and understanding of the transition to adulthood process.

Working through the HRSA-funded Children and Youth with Epilepsy (CYE) Grant, the objective’s first strategy broadened the focus of existing partnerships with the American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians and American Academy of Nurse practitioners to include the dissemination of evidence-informed transition resources to primary care practices, specialty providers, and LHDs.

During 2018, CSHCS partnered with the Michigan chapter of American Academy of Pediatrics to launch a learning collaborative. Utilizing Dr. Tisa Johnson-Hooper, a pediatrician with Henry Ford Health System and GotTransition expert, the project presented transition training to epileptologists involved in a program to improve access and services for children and youth with epilepsy. In addition to trainings, Dr. Johnson-Hooper disseminated tools and resources to the physicians to customize for their individual clinics. A website was created that contains all the resources they needed, and physicians selected the tools they wanted to use from this website for piloting within their practices.

Initially, many physicians reported an aversion to implementing transition-related services because the activities take time from their medical assessment and are not reimbursable by insurance providers (a common misconception). As part of integrating transition into these practices, Dr. Johnson-Hooper and her billing expert provided a presentation regarding transition and how to bill for transition activities. The presentation detailed specific codes to use to receive reimbursement for the transition activities completed within an office visit.

As a result of feedback from the physician participants, the project selected three of the six core elements as a focus for their efforts and evaluation. The project evaluator created a monthly charting tool for practices to help them evaluate their progress in implementing the transition tools. The charting tool included simple steps that helped them more completely utilize the transition resources. Regularly scheduled team calls and updates helped to hold participants accountable as they progressed. As a result, during FY 2018, 17 of the 35 providers reached a level 3 on the three selected Got Transition HCT Core elements.

The objective’s second strategy was to begin exploring how to effectively incorporate transition planning protocols into an existing electronic health record (EHR). Working with the Epilepsy Foundation, the project will continue to explore with national EHR companies like EPIC how to capture readiness assessments data electronically through the EHR.

Medical Care and Treatment (FY2018 Annual Report)

To address the priority area to “reduce barriers, improve access, and increase the availability of health services for all populations,” MDHHS developed a State Performance Measure (SPM) for Children and Youth with Special Health Care Needs (CYSHCN): “Percent of CYSHCN enrolled in CSHCS that receive timely medical care and treatment without difficulty.” While access to public and private health insurance coverage has improved as a result of the Affordable Care Act (ACA), CYSHCN require and use more health care services than other children. Specialty care and extensive, on-going, or long-term treatments, expensive pharmaceuticals, and services may be required to maintain or improve health status. Financing these costs can pose significant challenges to families even if a family has access to private insurance. Family health care costs can include deductibles, cost sharing, and premium payments. CSHCS is a significant resource for achieving adequate and appropriate health and specialist care while also providing a way to reduce costs to families.

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 slight improvement since 2016. In 2016, 88.1% of CSHCS CAHPS respondents gave top box ratings of ‘usually’ or ‘always’ to questions related to getting care and treatment when needed. In 2018, 88.9% of CSHCS CAHPS respondents gave top box ratings to the same questions.

Objective A: Reduce barriers to medical care and treatment by minimizing financial barriers from the increased medical services associated with the child’s special need.

The core strategy designed to reduce barriers to medical care and treatment is to minimize a family’s financial expenses by covering specialty care, pharmaceuticals, and treatment costs related to their child’s qualifying condition. CSHCS assistance may be applicable when the family does not have insurance, or the insurance is inadequate for children who require ongoing care from a pediatric sub-specialist for a chronic condition. During FY 2018, CSHCS enrollment averaged 34,936 clients per month. Of these, 67.5% were dually enrolled in CSHCS and Medicaid. Total enrollment growth during FY 2018 was 8.4%. There was a 10% growth in dually enrolled clients, compared with a 4.9% growth in those receiving Title V benefits only.

CSHCS is the payer of last resort and requires that families follow their primary and secondary insurance rules. Families who 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. Out of the 23,596 monthly (average) dually enrolled beneficiaries, 85% were covered by one of eleven MHPs that accept CSHCS dually enrolled beneficiaries. According to the 2018 CAHPS results, two-thirds of CSHCS respondents (67.1%) enrolled in an MHP rated their health plan with a top box rating of nine or ten (out of ten possible points).

Transportation concerns can significantly impact the stress families experience when caring for a child with special needs. According to the 2018 CAHPS survey, 11% of respondents indicated that they had requested transportation assistance. When asked to rate if the assistance had met their needs, 85% of respondents rated the assistance with a top box score. In addition, local health department CSHCS programs requested transportation assistance on behalf of 1,023 unduplicated clients during FY 2018. In response to these requests, CSHCS provided $538,614 in funding to support transportation costs associated with travel to and from medical appointments.

Another resource available for CSHCS enrollees is the Insurance Premium Payment Benefit. When cost beneficial to the State, CSHCS can pay some or all of the health insurance premiums for a client in order to assure continuity of coverage by other insurers. Maintaining this coverage helps clients who want to retain their current network of providers. In 2018, 131 families qualified for the Insurance Premium Payment Benefit. CSHCS paid $293,153 to maintain their private, Medicare, or Cobra insurance plans.  

The Michigan Children with Special Needs Fund (CSN Fund) is a privately-funded program within Michigan’s CSHCS program. The CSN Fund was created to help children with special health care needs when other funding sources are not available.  The Fund is managed by MDHHS. Working together with CSHCS, Family Center, LHDs, and other stakeholders, the Fund can assist children across Michigan in obtaining necessary equipment and modifications that they need but could not otherwise afford.

The Family Center provides two scholarship opportunities for clients and families to pursue educational opportunities to better understand their child’s chronic conditions. The first opportunity is through a summer camp scholarship program that provides funds up to $250 for children or youth with special health care needs to attend a licensed Michigan summer camp. The second is a conference scholarship opportunity available parents and/or youth aged 14-26. Participating parents/youth can attend a conference to learn about medical advances that can assist them in caring and advocating for their child or for themselves. Scholarships also help connect parents and youth with their peers, increasing their opportunity for support and social connections.  Scholarships are available on a first-come, first-served basis and are limited to one every two years per family.

Objective B: Improve access to medical care and treatment by improving the systems of care for CSHCN.

This objective’s core strategy involves supporting interdisciplinary team models of care, as provided through the Children’s Multi-Disciplinary Specialty (CMDS) clinics, Field Clinics, and Pediatric Intensive Feeding Program services. These models provide pediatric specialty care to children with complex medical needs. CMDS and Pediatric Intensive Feeding Program clinics utilize multi-disciplinary teams comprised of a pediatrician, subspecialist, social worker, dietician, registered nurse, and other members identified as appropriate for inclusion. Together, these teams develop a comprehensive plan of care and provide ongoing medical treatment to a child or youth diagnosed with a specific qualifying condition. The client and family are key members of the team and are included in the identification and on-going monitoring efforts of individualized goals, objectives, and resources.

CMDS clinics are designed to address specific conditions/syndromes such as diabetes, cancer, cleft palate, asthma, cystic fibrosis, sickle cell, hemophilia, kidney disease, and various other related disorders and conditions. During FY 2018, the types of supported clinics grew from 23 to 24, with the addition of a 22Q11.2 Deletion Syndrome Clinic.

MDHHS helps to support CMDS clinics at six tertiary and university hospital settings through an enhanced reimbursement mechanism for care coordination. The enhanced reimbursement provides additional revenue to support ancillary team members of the clinical care team as they assist with coordinate and integrate the care plan to wrap services around the client and family. During FY 2017 (the most current year for which a complete dataset is available), these clinics reported 3,858 client encounters. CSHCS provided $476,076 in enhanced reimbursements to the clinics specific to care coordination.

As part of the CMDS strategy, and in order to better understand specific outcomes associated with the clinics, staff spent much of FY 2018 developing a standardized site review tool that will be used to facilitate a guided conversation with CMDS clinics. The goal of the site review is to better understand the benefits of the model for both providers and families, identify best practices, and make recommendations for quality improvement. Piloting of the site review tool is currently underway.

Another strategy pursued in FY 2018 expanded access to pediatric feeding clinic services. CSHCS, working in partnership with Medicaid policy office, established a state plan amendment and promulgated policy for a Pediatric Intensive Feeding Program Services under the Early, Periodic Screening, Diagnostic and Treatment benefit. The program, based upon a CSHCS pilot, offers intensive feeding services to pediatric beneficiaries with significant feeding and swallowing difficulties. The policy established an onsite day treatment program that is delivered by a team of medical, behavioral health, and other professionals who work with the family to develop and implement an integrated and individualized care plan over the course of six weeks. The Pediatric Intensive Feeding Program Services policy became effective on July 1, 2018. Prior to the policy, the state was limited to one provider of intensive feeding clinic services. Today there are two, both of which are located within the state’s leading Children’s Hospitals. In addition, the policy expands coverage to all children within the Medicaid system who are eligible for services.

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

The first strategy for this objective consisted of expanding, promoting, and supporting the use of telemedicine/telehealth in rural and underserved communities. FY 2018 marked the second year of a three-year grant cycle dedicated to improving access to quality care for children and youth with epilepsy.

During FY 2018, Beaumont Health and Children’s Hospital of Michigan joined the partnership, by purchasing equipment and completing their patient assessment for project inclusion. At the same, St. Clair Teen Health Clinic purchased equipment and joined the learning collaborative. This progressive school-based clinic is working with one of the project’s epilepsy center partners to receive direct care via patient connectivity. CSHCS supports these clinics through funding assistance for equipment, policy and protocol development, technical assistance, and expert consultation. Through the evaluation component, the project hopes to establish best practices and evidence-informed practices.

CSHCS continues to support LHDs, as local staff work to promote the program, recruit enrollees, provide care coordination/case management services in the home, and assist in accessing and utilizing local resources. Many of the CSHCS nurses serve on Great Start Collaborations and have established referral networks, both internally with the Women, Infant and Children (WIC) and Lead and Immunization programs, and externally with Early On and Maternal and Infant Health Home Visitation programs.  This knowledge and experience make CSHCS nurses and program representatives good partners for advancing the population health model proposed by the Mother Infant Health and Equity Improvement Plan (MIHEIP).

To assist LHD staff in maintaining a competent workforce, CSHCS has implemented a variety of educational strategies which include annual regional meetings, accreditation pre-site meetings, Technical Tuesday video conferences, monthly LHD phone calls, orientation webinars, written informational and alert communications, and web sites.  During FY 2018, CSHCS launched a new SharePoint site for LHDs which streamlined communications and features interactive discussion boards, frequently used documents, links to webinars, and other functionality designed to improve knowledge and promote training.

The final strategy for this objective focuses on health equity and learning how to identify and address inequalities experienced by select groups and address the underlying conditions and experiences that cause health disparities. While CSHCS has participated in MDHHS initiatives in the past, a CSHCS-specific Health Equity team was separately organized within the last year.

The team consists of 14 staff members from across the division who are committed to promoting health equity and inclusion in CSHCS policies, practices, and outreach. The Health Equity Team has developed mission, vision, and value statements. It has also identified three focus areas: Workforce/Staff Development, Diversity Awareness, and Data. The workforce/staff development workgroup is focused on increasing capacity of CSHCS staff to understand health equity concepts and the impact of institutional racism both within the agency and on the beneficiaries served. The diversity awareness workgroup seeks to create a positive image of the CSHCS team and their work, both within the administration and with the program’s partners. The data committee seeks to review key CSHCS data sets in order to improve data quality, and to analyze data to identify existing disparities and provide ongoing monitoring. In addition, CSHCS institutionalized a focus on health equity by including health equity in management and staff performance measures and employee engagement plans. CSHCS will apply a health equity lens to the LHD accreditation process, MHP and CMDS site visits, and CSHCS communication/outreach plans.

Included in this strategy, CSHCS has modified its business processes to comply with section 1557 of the Affordable Care Act that seeks to inform clients about MDHHS nondiscrimination practices as well as assure the accessibility of translation services for those with limited English proficiency.