How States Use the National Standards for CYSHCN to Strengthen Medicaid Managed Care for Children with Special Health Care Needs

About this Fact Sheet

The various state examples outlined here resulted from a 12-month learning collaborative facilitated by NASHP, in partnership with the Association of Maternal & Child Health Programs (AMCHP), with support from the Lucile Packard Foundation for Children’s Health (LPFCH). NASHP and AMCHP convened the learning collaborative academy both virtually and in-person, providing targeted technical assistance, peer-to-peer learning opportunities, and individual assistance to state teams from October 2017 to September 2018. The learning collaborative states included Delaware, Georgia Massachusetts, New Mexico, Rhode Island, and West Virginia. Each team was comprised of representatives from the state’s Medicaid and Title V agencies, a provider who serves CYSHCN, a representative from a Medicaid managed care organization and a family member of a CYSHCN.

Historically, most children and youth with special health care needs (CYSHCN) were not enrolled in Medicaid managed care (MMC) programs because of their medical complexity and the number of specialty services they required. These services, including community-based supports such as in-home and respite care, care coordination, and long-term services and supports, were deemed by state health policymakers as best delivered by a fee-for-service system. As states become more adept at designing and implementing managed care programs for adult Medicaid beneficiaries, they have begun enrolling populations with complex needs into managed care to better coordinate care, control costs, and improve health care quality and outcomes.

As of June 2017, 47 states and Washington, DC, used some form of managed care to provide services to all or some children and adults enrolled in Medicaid.[1] Of states with managed care delivery systems, all enrolled at least some or all of the CYSHCN population into some type of MMC. Contracting with risk-based managed care organizations (MCO) is the most common managed care delivery system used to serve Medicaid beneficiaries, including CYSHCN.

Nearly 20 percent of US children ages birth to 18 years (14.6 million children) have a chronic and/or complex health care need (e.g., asthma, diabetes, spina bifida, autism) requiring physical and behavioral health care services and supports beyond what children require normally.[2] CYSHCN are costlier to care for than children without special health care needs. Within Medicaid, for example, annual per enrollee spending is over 12-times higher for children who use long-term care services ($37,084) as compared to those who do not ($2,863).[3] MMC gives states a unique opportunity to strengthen the structure and delivery of health care, improve quality, and control costs, particularly for beneficiaries with chronic and complex health care needs.

The National Standards for Systems of Care for Children and Youth with Special Health Care Needs (CYSHCN) is a resource to guide and support states working to improve systems of care for CYSHCN, including Medicaid managed care. The National Standards for CYSHCN highlight the core components of the structure and process of an effective system of care for CYSHCN. The standards were developed with guidance from a national work group whose members include families of CYSHCN, state Medicaid agencies, public health, researchers, children’s hospitals, health plans, provider groups, and other stakeholders. Since its release in 2014, Medicaid and Children’s Health Insurance Program (CHIP) agencies, state Title V CYSHCN programs, health care systems, consumers, and others have used these standards as guideposts to improve systems of care for CYSHCN in an ever-changing health care landscape.

In 2018, the National Academy for State Health Policy (NASHP), in partnership with the Association of Maternal and Child Health Programs (AMCHP), led a national learning collaborative to help several states use the National Standards as a guide as they worked to improve MMC for CYSHCN. The following lessons learned highlight how these states effectively used the National Standards to strengthen their managed care systems for CYSHCN.

Analyzing and Enhancing Specialized Managed Care Plans

States can enroll special populations into health plans that are designed to uniquely serve enrollees with special needs (e.g., a specialized managed care program). Six states (Arizona, Florida, Georgia, Texas, Virginia, and Wisconsin) and Washington, DC have developed specialized MMC programs that exclusively serve all or some CYSHCN populations.[4] These plans target health care benefits and services to meet the specific needs of Medicaid beneficiaries served by these programs. Georgia used the National Standards as a resource to strengthen collaboration across agencies to improve the state’s specialized MMC program — Georgia Families 360 — for children in foster care and the juvenile justice system. Learning collaborative participants from Georgia Medicaid, the Title V CYSHCN program, and the Department of Behavioral Health reviewed the National Standards for CYSHCN and selected the domains of Access to Care, Transitions of Care, and Care Coordination for their analysis. The state team created a crosswalk elements from three National Standards domains and elements their Georgia 360 contract as an internal evaluation tool. As a result of this review, the state updated its Medicaid policy manual with elements from the National Standards. Future work is planned to increase collaboration between the Georgia Families 360 MCO and the Title V agency to improve the provision of high-quality care coordination for the foster care population.

Providing a Framework to Design and Strengthen Care Delivery Systems

As a result of a state budget legislative mandate, in 2017 Delaware’s Medicaid agency developed a comprehensive plan to manage the health care needs of Delaware’s children with medical complexity (CMC). The agency formed a state steering committee and various work groups to develop the plan, working closely with MCOs and other stakeholders. The Models of Care Workgroup used the National Standards for CYSHCN to develop a framework on which to build a model of care for CMC. The framework was outlined in the final report to illustrate what an ideal system of care for CMC would look like. The Delaware Plan for Managing the Health Care Needs of Children with Medical Complexity was published in May 2018 and includes a comprehensive set of recommendations that the Delaware team plans to work implement in the future.

Strengthening Contract Language to Address the Needs of CYSHCN

New Mexico has coordinated across agencies and stakeholders to provide input into the state’s 1115 Medicaid waiver renewal and contract language development pertaining to CYSHCN. As part of this work, New Mexico Medicaid and state Title V CYSHCN officials developed a definition of CYSHCN,[5] which enables the state to better identify CYSHCN and target services to this population within its managed care program. The definition is scheduled to be included in the next round of Medicaid contracts with MCOs. This work aligns with the first standard in the National Standards’ Identification, Screening, Assessment, and Referral domain that\ states, “the state system should have a definition of CYSHCN.” Additionally, the New Mexico Learning Collaborative team used the National Standards for CYSHCN Medicaid Managed Care Contract Language Tool to inform development of the definition.

West Virginia officials, led by the state’s Title V CYSHCN program director, wanted to take advantage of the changes required by the federal Medicaid Managed Care Final Rule and use the National Standards for CYSHCN to make improvements in how the Medicaid Managed Care system served CYSHCN. After meeting as an interagency workgroup, West Virginia officials identified the need for closer coordination between the Title V program and the individual Medicaid MCOs to improve care coordination and the services that CYSHCN received. To improve coordination, the team developed a memorandum of understanding (MOU) and an associated data-sharing agreement between Medicaid MCOs and the state Title V program. To assist with implementation of the updated MOU, West Virginia referred to Strengthening the Title V-Medicaid Partnership: Strategies to Support the Development of Robust Interagency Agreements between Title V and Medicaid. To ensure this MOU is enforced and coordination continues, state Title V program staff plan to meet monthly with MCO staff on an ongoing basis. Future work will focus on implementing standards for shared plans of care in cases where MCOs and Title V are both providing services to the same enrollees. The National Standards will be used to guide this work.

Improving Care Coordination and Transition to Adult Care

Rhode Island Medicaid and Title V agencies have worked to better understand the care coordination system in their state and specifically identify providers of care coordination for CYSHCN. Care coordination is a key component of a high-quality system of care and a crucial National Standards element. After reviewing the care coordination standards to learn what an ideal system of care coordination should offer, Rhode Island officials assembled key stakeholders and held monthly meetings to review the current status of care coordination services, identify available resources, and share experiences. The team also conducted an analysis of a specific group of CYSHCN enrolled in Medicaid managed care — the state’s Patient-Centered Medical Home program (PCMH-Kids) – who receive care in a community specialty care center. The children enrolled in this program require care coordination due to the complex array of services they receive. The state identified numerous barriers to providing care coordination, including limited communication between care coordinators, a lack of official designation for some care coordinators by Medicaid which prevents reimbursement, and an inability for care coordinators to authorize services, which caused delays in care. Now that it understands the barriers and complexity of care coordination for CYSHCN, Rhode Island plans to explore opportunities for policy changes, such as designating a lead care coordinator and linking a specialty care plan to the child’s medical home.

Massachusetts has similarly focused on improving integration and coordination of care with the state’s recently launched Accountable Care Organization (ACO) managed care structure. Accountable Care Organization (ACO) managed care structure. The Massachusetts’ team focused its work on the feasibility of using the new ACO model to support transition of youth with special health care needs (YSHCN) from pediatric to adult health care settings using transition policies aligned with National Standards.  The Massachusetts’ team analyzed some existing transition activities in the state. These include a hybrid transition model that is being piloted at Boston Children’s Hospital between pediatrics, pediatric neurology/developmental pediatrics and adult care.  The Massachusetts Department of Public Health also surveyed Title V funded care coordinators and families of CYSHCN to learn about the barriers to transition.   State officials learned about integrated care strategies used by other states and organizations for transition such as Got Transition and identified value based purchasing strategies that could be used to incentivize quality transition. Massachusetts is now planning to develop guidance around strategies to implement transition policies within the ACO structure.


As states expand the use of Medicaid managed care to serve CYSHCN, the National Standards for CYSHCN and recent state approaches to their implementation can provide valuable resources. For more information on the National Standards and tools and resources for their implementation, visit the National Standards Toolkit.



[1] National Academy for State Health Policy. State Medicaid Managed Care Enrollment and Design for Children and Youth with Special Health Care Needs: A 50-state Review of Medicaid Managed Care Contracts. Washington, DC: National Academy for State Health Policy, October 2017.

[2] Health Resources and Services Administration, “Children with Special Health Care Needs,” December 2016,

[3] The Henry J. Kaiser Family Foundation. Medicaid Restructuring Under the American Health Care Act and Children with Special Health Care Needs. Washington, DC: The Henry J. Kaiser Family Foundation, June 2017.

[4] National Academy for State Health Policy. State Medicaid Managed Care Enrollment and Design for Children and Youth with Special Health Care Needs: A 50-state Review of Medicaid Managed Care Contracts. Washington, DC: National Academy for State Health Policy, October 2017.

[5] Children and Youth with special health care needs (CYSHCN) is defined as an individual younger than 21 years old, regardless of marital status experiencing a moderate to severe medical and/or behavioral condition.

  1. a) With significant potential or actual impact on long term health and ability to function
  2. b) Which requires specialized health care services and/or a variety of services from multiple diverse systems.