The Building Blocks of a Comprehensive System of Care for CYSHCN

Improving care for children and youth with special health care needs, also known as CYSHCN, brought together a select group of Early Periodic Screening, Diagnosis, and Treatment (EPSDT) Coordinators and Title V children and CYSHCN directors this October as part of NASHP’s 2014 Annual State Health Policy Conference. These state leaders, who are responsible for overseeing the EPSDT benefit and CYSHCN programming, respectively, gathered to strategize on improving systems of care for CYSHCN. This daylong meeting, supported by the Lucile Packard Foundation for Children’s Health, offered attendees a unique platform for exchanging best practices and sharing the challenges and successes experienced as they work to improve care for CYSCHN. Discussions touched on an array of topics such as screening, assessment and referral, care coordination, and treatment services.

While it became clear that states are simply in different places in their journeys to advance care for this population of children, several universal themes emerged:

  • Care coordination is an integral part of primary care services for CYSHCN and an area where Medicaid, public health and other groups want to improve coordination of services within the system of care.
  • Efforts to reform the health care delivery system, while typically focused on the adult population, are increasingly beginning to address children, particularly CYSHCN.
  • Cross-agency partnerships are key to delivering comprehensive, coordinated care and avoiding duplicating services from multiple agencies.
  • Certain Medicaid policies that inadvertently hinder families’ abilities to care for their children remain a challenge for many states.


EPSDT Coordinators and Title V CYSHCN directors identified numerous policy levers available for strengthening comprehensive systems of care for CYSHCN. Many participants discussed innovative approaches for providing care coordination services through delivery system models such as the patient-centered medical home and Health Homes under Section 2703 of the Affordable Care Act. Though most often targeted at serving adults with chronic conditions, several states shared their strategies for adapting Health Homes to specifically serve children with complex needs. For example, Iowa’s integrated Health Home uses a team of providers and community resources to provide whole-person, patient-centered, coordinated care to children with serious emotional disturbance (SED) and adults with serious mental illness (SMI). Rhode Island operates a separate Health Home for CYSHCN served by Comprehensive Evaluation Diagnosis Assessment Referral and Re-evaluation (CEDARR) Family Centers.

Many participants agreed that Health Homes are a promising model for providing effective care coordination services to CYSHCN, and that expanding existing Health Home models to cover children can be a fruitful strategy. However, some state officials described seeing a new need arise as a result of implementing more care coordination services – the need for a “coordinator of the care coordinators.” Despite efforts to efficiently coordinate services, families with CYSHCN often have multiple care coordinators from a variety of programs and entities (e.g., providers, health plans, specialty providers, Medicaid, public health). One strategy raised for minimizing the duplication of services is to strengthen partnerships between Medicaid, Public Health, and other child-serving agencies in order to identify coordination opportunities.

Participants identified additional policy obstacles that make it difficult for families to get children access to the care and services they need. For example, current Medicaid policies that prohibit billing to more than one provider in the same day may require families of CYSHCN to travel more frequently to bring their children to a multitude of appointments. Especially for families living in rural areas, the arduous task of traveling with a special needs child could be lessened if parents were able to coordinate multiple appointments in the same day.

The day concluded with an informative presentation from Eliot Fishman, Director of the Children and Adults Health Programs Group within the Center for Medicaid and CHIP Services. Though states continue to think through the best ways to administer the EPSDT benefit, Dr. Fishman underscored the value of EPSDT in covering a wide variety of medically necessary services for children thereby making EPSDT “a tremendously powerful tool for benefit design.”

As states continue their work to enhance systems of care for CYSHCN, they can take advantage of a variety of new resources, one of which was featured at the meeting. The recently released National Standards for Systems of Care for CYSHCN describe the structure and process components of an effective system of care for CYSHCN and are an especially useful tool. By addressing key domains such as access to care, screening, assessment and referral, and insurance and financing, the Standards serve as a useful guide to help states achieve improved outcomes for CYSHCN.

For more information on state EPSDT services, please visit: