The Association of Maternal & Child Health Programs has released an updated version of the National Standards for Systems of Care that strive to serve the nation’s 11 million children and youth with special health care needs (CYSHCN).

Version 2.0 of the National Standards for Systems of Care for Children and Youth with Special Health Care Needs builds on the critical domains, elements, and standards of the original work while streamlining content for easier use by states and stakeholders. Updating the first version released in 2014, the new standards were produced in partnership with the National Academy for State Health Policy with support from the Lucile Packard Foundation for Children’s Health, and with input from the National Standards work group as well as other key stakeholders and subject matter experts.

The National Standards set the core components for the structure and process of effective systems of care for the approximately 15 percent of U.S. children up to age 18 who have a chronic and/or complex health care need. Creating a comprehensive, quality system of care for these children has been one of the most challenging areas for state health leaders and other stakeholders, such as state Title V CYSHCN programs, health plans, private insurers, state Medicaid and CHIP agencies, pediatricians and family physicians, and families.

Following the U.S. Maternal and Child Health Bureau’s creation of national performance measures for CYSHCN, the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project released the National Standards to supplement federal statute and regulatory requirements under Medicaid and other relevant federal laws.

Among the revisions in Version 2.0:

• The standards are organized by eight core domains, with Family Professional Partnerships and Insurance and Financing serving as foundational standards that should exist in any system that serves CYSHCN. Individual standards from these two previous domains in Version 1.0 are retained in either the foundational standards or in one of the eight domains in Version 2.0.
• Standards that focused on clinical care have been moved to the appendices or reframed to focus on standards at the systems level.
• All standards have been reviewed and updated with recent federal guidance or regulations in mind, such as the Medicaid and CHIP Managed Care Final Rule released in 2016.ation

Download the updated National Standards.