While the definition of care coordination is much debated, it generally involves an interdisciplinary approach to ensuring access to health care and social support services, in which a care coordinator manages and monitors an individual’s needs, goals, and preferences based on a comprehensive plan. The National Standards for Care Coordination for CYSHCN define care coordination as patient- and family-centered, assessment-driven, team-based activities designed to meet the needs of children and youth. These activities address interrelated medical, social, developmental, behavioral, educational and financial needs to achieve optimal health and wellness outcomes, and efficient delivery of health-related services and resources within and across systems. Case management programs sometimes involve elements of care coordination, and the two terms are occasionally used interchangeably, although case management typically focuses more on managing health care utilization.
According to the 2020-2021 National Survey of Children’s Health, 30.5% of CYSHCN did not receive needed care coordination, and 28.1% of families raising CYSHCN reported spending 1-4 hours per week coordinating care for their child. In many states, Title V programs provide care coordination services directly or contract with other organizations to provide these services. They may also contract with the Medicaid agency in the state to provide care coordination on a fee-for-service basis.
Medicaid Reimbursement for Care Coordination Services
Arkansas Title V provides care coordination to CYSHCN, and bills Medicaid for those services. In February 2017, Arkansas Medicaid implemented the Provider-Led Arkansas Shared Savings Entity (PASSE) model. Under this new model, focused on individuals with behavioral health and developmental disabilities, care coordinators create a service plan for each person. The Title V CYSHCN program, the Children with Chronic Health Conditions Program (CCHCP), had previously offered care coordination to CYSHCN, and found that over 40% of the children they served now received services through a PASSE. In response, the CCHCP developed outreach and referral strategies to ensure that eligible children who do not receive care coordination through another pathway receive care coordination services through the CCHCP program. To be eligible, a child must be under 21 years of age, Medicaid-eligible, and have an eligible diagnosis. Services that CCHCP provides are classified as targeted case management by Arkansas Medicaid, and Medicaid reimburses for these services.
In Indiana, About Special Kids, a family leader organization, provides case management services to families enrolled in Medicaid managed care, and educates managed care case managers about providing case management services to CYSHCN and their families. In this model, parents and caregivers with lived experience caring for CYSHCN provide care coordination and are reimbursed by the Medicaid managed care organization.
The New Mexico Children’s Medical Services (CMS) program employs social workers who provide care coordination services to CYSHCN up to age 21 throughout the state. Title V block grant funds partially finance these positions; the care coordinators also bill Medicaid under a contract with Medicaid Managed Care Organizations in the state. Additionally, Title V CYSHCN staff offer expertise to MCO-employed care coordinators who are working with children with especially complex needs.
Illinois Medicaid and Title V began working particularly closely around care coordination in 2019 when Medicaid enrolled CYSHCN in mandatory Managed Care, transitioning them out of fee-for-service Medicaid. The Illinois CYSHCN program, administered through a subaward to the University of Illinois at Chicago Division of Specialized Care for Children (UIC-DSCC), had previously provided care coordination to CYSHCN through their Core Program. UIC-DSCC entered into contracts with MCOs to continue providing this service. While not mandatory, five MCOs in Illinois have partnered with UIC-DCSS to establish a per-member, per-month fee for care coordination services.
Each child enrolled in Kentucky’s Office for Children with Special Health Care Needs (OCSHCN) has a care coordinator. The memorandum of agreement between OCSHCN and Medicaid defines what services OCSHCN will provide and what Medicaid will reimburse for. OCSHCN bills Medicaid and Medicaid’s Managed Care Organizations for particular medical services provided to CYSHCN, and receives a cost settlement at the end of each year for services that are not directly reimbursed.
Collaboration and Coordination between Care Coordination Programs
In Connecticut, the Community Care Coordination Collaborative hosts regional meetings of care coordinators and other agencies and organizations that serve CYSHCN. Through these meetings, participants can troubleshoot challenges for individual families and note trends that need to be addressed systemically. The regional Community Care Collaboratives also provide technical assistance to medical homes within their regions to support quality care coordination for the CYSHCN these practices serve.
Minnesota Title V funds a Pediatric Care Coordination Community of Practice, which is facilitated by a subcontractor. Community of Practice participants represent a variety of professions and sectors, and include care coordinators, case managers, social workers, community health workers, and nurses. Through the program, these care coordinators have an opportunity to learn about the role and scope of practice of colleagues in other sectors and identify opportunities for collaboration. The community of practice also hosts educational webinars and an informational website to disseminate resources.
In Massachusetts, the state Title V CYSHCN program provides care coordination to children and youth up to age 23 with special health care and complex coordination needs (MDPH Care Coordination Program). The MDPH Care Coordination Program hosts quarterly regional networking calls to foster collaboration between agencies serving CYSHCN within each region of Massachusetts.
In 2017 Massachusetts Medicaid introduced an accountable care organization (ACO) model to provide services to enrollees, including one pediatric ACO. ACOs are financially accountable for providing care to these populations, and services offered include care coordination. When this program was implemented, the Care Coordination Program invited ACO care coordinators in order to foster relationship-building and share Care Coordination Program expertise about supporting CYSHCN.
Title V-Medicaid Partnership Focused on Care Coordination
North Carolina’s Care Management for At-Risk Children (CMARC) program is funded by Medicaid and Title V. The program provides care management services to children birth to five years of age who meet medical or social needs criteria. Services for children not enrolled in Medicaid are also able to be covered by Title V.
In Tennessee, care coordination services provided by Children’s Special Services (the state’s CYSHCN program) integrated with Community Health Access and Navigation in Tennessee (CHANT), a care coordination program that serves pregnant and postpartum adolescents and women and children and youth up to age 21, including CYSHCN. The program is funded by combining Title V Block grant funds and Medicaid dollars.
In Kansas, there is a partnership between Medicaid Managed Care case managers and CYSHCN coordinators. The state CYSHCN coordinators offer presentations to MCOs on request and the CYSHCN program shares a monthly report with the MCOs to help identify shared clients. The CYSHCN program also works with the state’s Medicaid liaison to ensure that services are not duplicated and to identify gaps in services.
Title V-Funded Care Coordination
Currently Louisiana Title V is shifting care coordination efforts to a statewide model. As part of the pandemic response, Title V transitioned their Family Resource Center from a local brick and mortar facility to a statewide virtual resource center. Through this statewide center, any family across the state can access these services. During this transition, Title V continues to sponsor care coordinators in four academic clinics. These care coordinators support capacity-building among providers and trainees around how to make appropriate referrals for families and provides direct care coordination services to CYSHCN within these clinics.
Also during the pandemic response, Louisiana Title V launched a new collaborative partnership with the Families Helping Families peer support networks statewide, in order to ensure families have community level access to resource and referral services. Families Helping Families have expanded their service reach to include CYSHCN, with and without disabilities.
Lastly, the Louisiana CYSHCN team develops and distributes Regional Resource Guides to providers, community partners and state programs that include information on the most commonly used pediatric and adolescent community supports. These resource guides include basic service and contact information as well as program eligibility criteria.
Maine’s CYSHCN program funds a care coordinator through the Partners in Care Coordination program. This staff member assists families raising CYSHCN with navigating the system of care, makes referrals to community agencies, and works with MaineCare (Maine’s Medicaid agency) and the Bureau of Insurance to address coverage questions and advocate for families.
New Hampshire’s CYSHCN program, within the Bureau for Family Centered Services, employs care coordinators, both directly and through a contract with a federally qualified health center. The care coordinators are nurses or social workers. Care coordination services in the state include support locating specialty providers, transition support, and home or school visits where appropriate.
The CYSHCN Cares 2 program in Mississippi aims to enhance care coordination within patient-family centered medical/dental homes for CYSHCN. The practices who have been engaged in the three cohorts of this learning collaborative model are primarily federally qualified health centers (FQHCs). The practices are required to hire Parent Consultants to provide care coordination and train them as Community Health Workers (CHWs). The Parent Consultants draw on their personal experiences as parents raising CYSHCN and their CHW training to meet the needs of children and families.
The Oregon CYSHCN program partners with the Child Development and Rehabilitation Center (CDRC) at Oregon Health and Science University’s Doernbecher Children’s Hospital. Title V support allows the CDRC to maintain a family-centered, team based, interdisciplinary care model that includes a focus on care coordination. Under this model, multiple specialists evaluate a child on the same day and develop holistic plans of care and family recommendations.
Kansas’ Title V agency partnered with the Community Health Center for Southeast Kansas (CHC-SEC), the largest provider of pediatric services in rural southeast Kansas, to pilot a holistic care coordination model within the FQHC. As part of the pilot, a full-time care coordinator worked with low-income families raising CYSHCN throughout the region to ensure they were connected to a medical home and assist in navigating access to services and resources. In FY2020, 144 families participated in the program.
The New Hampshire CYSHCN program’s Complex Care Network brings together a developmental pediatrician, a pediatric physical therapist, an educator, and a care coordinator to connect a child’s medical and educational goals and needs. Through this program, CYSHCN receive short-term consultation and follow-up with the team of specialists that can educate and advise family members, primary care providers, and educators from the child’s school.
In Connecticut, care coordinators for each region provide a variety of services for CYSHCN. Some care coordinators are embedded in pediatric practices while others spend time working to engage new practices with medical home and provide ongoing engagement with other involved practices. Care coordination activities include assessment, care planning, family advocacy, linkage to specialists, dental services and community-based resources, coordination of health financing resources, coordination with school-based services, chronic disease management, integration with behavioral health, provider and family education, provider outreach including dental providers, family support, and transition planning. Care coordinators help families get appointments with specialists including dental services, acquire transportation to appointments, get respite funds, and facilitate insurance coverage for services. The coordinators help each family prioritize their specific needs, link them to support groups and food pantries in the area, help set up home therapy, and help with any difficulties or confusion the families might be having in getting services at school, including attending meetings with the school to help set up 504 plans.
Condition-Specific Care Coordination
Puerto Rico’s Title V program funds a social worker with the Puerto Rico Birth Defects Surveillance and Prevention system who follows up with families of infants identified as having a birth defect. As part of the care coordination role, the social worker provides families information on community resources, helps them access services and condition-specific organizations, and makes appropriate referrals.