Care coordination has the potential to reduce fragmentation of care by helping ensure children and youth with special health care needs (CYSHCN) receive the health care services they need and avoid duplication of unnecessary services. Care coordination services can also help link children and their families to needed non-medical services and supports. Title V/CYSHCN programs, Medicaid, and other organizations fund and provide care coordination services for CYSHCN in a variety of ways.
Some Title V programs fund care coordination directly for CYSHCN or contract with other organizations to provide care coordination.
In Connecticut, the Title V/CSHCN program has identified care coordination contractors in each region of the state who provide support at the regional level. They are co-located or work in partnership with pediatric practices in their region.
The Mississippi Title V/CYSHCN program has care coordinators in its central office and two additional coordinators in each of the nine districts in the state. They created a database to document care for CYSHCN, which all the coordinators can access. This has improved communication among the staff. Title V staff analyzes the care coordination activities noted in the database and follows up with the coordinators to make them aware of the impact of their efforts, improved health outcomes, and any reduced costs. They now provide a report card for each district so they can see how well they are serving CYSHCN. It’s been positively received, helps keep staff accountable for their work, and helps to improve coordination of care for CYSHCN.
In New Mexico, medical social workers provide care coordination in all public health offices.
Care Connection for Children (CCC) is one of four Title V programs that serve children and youth with special health care needs in Virginia. Under the CCC program, Title V partners with health care systems across the state to provide care coordination for children who have a physical condition that has lasted or is expected to last a year or more.
The Alaska Title V/CYSHCN program funds Stone Soup, the Alaska Family-to-Family (F2F) Health Information Center, to provide parent navigation services to help families coordinate care for their children and youth with special health care needs.
The Indiana Title V/CYSHCN program provides funding to some clinics and outreach programs that work with children and youth with special health care needs. These programs are paid to provide care coordination for families.
Several states have expanded the availability of care coordination services for CYSHCN by blending state Title V and Medicaid funding.
Arkansas Title V receives Medicaid funds for the care coordination they provide for children and youth with special health care needs.
Through the Children’s Healthcare Improvement Collaborative (CHIC), the Idaho Medicaid and Title V programs, in partnership with practitioners, worked together to regionalize coordination of care for children and youth with special health care needs (CYSHCN). Idaho is a very rural state. This effort worked to connect service systems, ensure CYSHCN got the care they needed, and helped parents navigate the system. This was also an effort to work with pediatric clinics to move them towards becoming patient-centered medical homes. The Idaho Family-to-Family (F2F) Health Information Center was a partner in this collaboration and continues to provide “Stop Spinning Your Wheels: Coordinated Care for your Child” trainings and workshops for parents of CYSHCN.
The Kentucky Commission for Children with Special Health Care Needs, the Title V/CSHCN program, provides care coordination to all individuals they serve, regardless of insurance. They participate in a cost-sharing agreement with Medicaid and its Managed Care Organizations (MCOs). Once all Medicaid claims are settled at the end of the year, Medicaid and MCOs provide funds to share a portion of the Title V costs for providing care coordination to CSHCN who are enrolled in Medicaid Managed Care.
Utah Medicaid provides matching funds for Medicaid-enrolled children and youth with special health care needs who receive care coordination through Title V/CSHCN.
Other states use Medicaid funding to provide care coordination through the EPSDT benefit.
In Alabama, the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) Care Coordination Program provides care coordination for children to access and obtain maximum benefit from needed health-related services.
In Colorado the Regional Care Collaborative Organizations (RCCOs) have contractors who pay for care coordination services.
In the District of Columbia, the Health Services for Children with Special Needs program, an MCO for children who receive Supplemental Security Income (SSI), provides care coordination.
Medicaid managed care plans in Florida are required to maintain written care coordination protocols that include appropriate referral and scheduling assistance for enrollees needing specialty health care or transportation services, including those identified through EPSDT, and for individuals with complex medical needs, including behavioral health needs.
In Iowa, Medicaid funds care coordination for Medicaid-enrolled children under the EPSDT benefit. Children with serious emotional disturbance receive care coordination as part of Iowa’s Medicaid Section 2703 Health Home.
In New Mexico, the Medicaid Managed Care program is called Centennial Care. Under Centennial Care, the four MCOs provide a broad range of services to Medicaid recipients, which includes physical and mental health services as well as long-term care services and supports (LTSS). This ensures that members have access to the right types of services at the right time and also have access to care coordination. Everyone receives a risk assessment. There are three levels of care coordination. Members with special health care needs receive a higher level of care coordination.
Resources Related to Care Coordination
- The Care Coordination Conundrum and Children and Youth with Special Health Care Needs
- Care Coordination in a Statewide System of Care: Financing Models and Payment Strategies
- Designing Evaluation Studies of Care Coordination Outcomes for Children and Youth with Special Health Care Needs
- Webinar series on Care Coordination for Children with Complex Health Care Needs, sponsored by the Lucile Packard Foundation for Children’s Health (LPFCH) and the Catalyst Center