National Standards for CYSHCN Measures Compendium
This measures compendium highlights quality measures aligned with key elements for a system of care for children and youth with special health care needs (CYSHCN) outlined in the National Standards of Care for Children and Youth with Special Health Care Needs. This tool compiles data and quality measures from applicable and widely used measure sets. Identification of data and quality measures can help states evaluate how well their system of care is serving CYSHCN. View the compendium in
How to Use this Compendium
The National Standards compendium categorizes critical data and quality measures from 13 measure sets into 10 system-level standards. Each standard features relevant measures. Each measure features hyperlinks to more information about the measure. For survey-related measures, the hyperlink is accompanied by more information, such as the exact wording of the survey question posed, the confidence interval for the data collected, and the national trend for the question (if it is from a national survey). For composite measures, the hyperlink includes information about the measures and data that make up the composite measure.
Description of Measure Sets in the National Standards Measures Compendium
|Measure Set||Description||Source||Frequency of Updates and/or Reporting|
|Consumer Assessment of Healthcare Providers and Systems (CAHPS) Health Plan Survey 5.0||A survey, developed by the Agency for Healthcare Research and Quality (AHRQ), that is commonly used by Medicaid agencies and health plans to assess health plan enrollees’ experiences, including access to appointments and care through their health plan, communication with doctors available through the plan, and customer service.||Survey data||Annually|
|CAHPS Survey: Children with Chronic Conditions||A supplemental CAHPS survey question set specifically assessing the experiences of children with chronic conditions with health plans and health care services.||Survey data||Annually|
|Family Experience with Care Coordination (FECC)||A survey developed by the Center of Excellence on Quality of Care Measures for Children with Complex Needs that assesses care coordination for children with chronic and complex conditions.||Survey data||N/A|
|Healthcare Effectiveness Data and Information Set (HEDIS)||A set of quality measures developed by the National Committee for Quality Assurance (NCQA) to measure health plan performance. Medicaid health plans accredited by NCQA must report on 35 select measures annually.||Administrative, hybrid, and survey data||Annually|
|Medicaid/CHIP Child Core Set||A set of health care quality measures identified by the Centers for Medicare & Medicaid Services (CMS). State Medicaid and Children’s Health Insurance Program (CHIP) programs currently report on these measures voluntarily but will be required to submit data on all measures by 2024.||Administrative, hybrid, and survey data||Annually|
|Pediatric Integrated Care Survey (PICS)||A validated survey, developed by Boston Children’s Hospital, that measures experiences of families with the integration of health care and related services for children with complex medical, behavioral, and developmental needs.||Survey data||N/A|
|Pediatric Quality Measures Program (PQMP)||A joint CMS and AHRQ program that is strengthening the Medicaid/CHIP Child Core Set and has developed new pediatric measures across diverse topics.||Administrative and medical records data||N/A|
|National Survey of Children’s Health (NSCH)||A national annual survey that measures many key topics concerning children’s health and well-being. NSCH is sponsored by the Health Resources and Services Administration, Maternal and Child Health Bureau, and conducted by the US Census Bureau.||Survey data||Annually|
|Adolescent Assessment of Preparation for Transition (ADAPT)||A validated survey, developed by the Center of Excellence for Pediatric Quality Measurement, consisting of youth-reported measures of the quality of health care transition preparation. The survey is designed to be completed by 16- and 17-year-old patients receiving care from a pediatric-focused provider.||Survey data||N/A|
|Individuals with Disabilities Education Act (IDEA) Child Count, Part C||A measure set of state reported data related to children who are receiving services through the Part C Early Intervention program. States are required to submit this data to the US Department of Education annually.||Hybrid of medical and educational records (paper or electronic) and administrative claims||Annually|
|CMS Annual Medicaid Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Participation report||A set of data measures used by CMS to collect basic information about state Medicaid programs to assess the effectiveness of EPSDT services. States are required to submit this data to CMS annually.||Hybrid of medical and educational records (paper or electronic) and administrative claims||Annually|
|NewSTEPs: Newborn screening quality indicators||A set of quality indicators on key aspects of state newborn screening systems, developed by the NewSTEPs organization. States that have a memorandum of understanding with NewSTEPs submit the data voluntarily on an annual basis.||Newborn screening data||Annually|
|Promoting Healthy Development Survey (PHDS-PLUS)||The PHDS-PLUS survey measures whether young children are receiving nationally recommended preventive and developmental services, as well as certain other factors related to children’s health. The survey is designed for use by Medicaid and other programs, and was developed under the Child and Adolescent Health Measurement Initiative.||Survey data||N/A|
Foundational Standard 1: Children and Families Are Core Partners
|CYSHCN and families are active, core partners in decision making in all levels of care.||National Survey of Children’s Health||PHDS-PLUS||CAHPS Health Plan Survey 5.0||CAHPS Chronic Condition Supplement||Pediatric Integrated Care Survey||Title V NOM (Data from NSCH)|
|Children whose families are partners in shared decision-making for their optimal health (composite)||Family-centered care that respects, listens to, and partners with parents (composite)
In the last 12 months, how often did (child’s) doctors or other health care providers:
In the last 12 months, did (child’s) doctors or other health care providers:
In thinking about all of the care provided from (child’s) doctors or health providers in the last 12 months, how helpful has it been in the following areas:
|Doctor listened carefully to respondent||Parents’ experiences with getting needed information about their child’s care (composite)
In the last 6 months:
|Family impact (composite)||Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)|
Foundational Standard 2: Services Are Culturally Competent and Accessible
|All services and supports for CYSHCN are implemented and delivered in a culturally-competent, linguistically appropriate, and accessible manner to best serve CYSHCN and their families.
|The National Survey of Children’s Health||PHDS-PLUS||CAHPS Health Plan Survey 5.0||FECC, PQMP||Title V NOM (Data from NSCH)||Title V NPM (Data from NSCH)|
|Children who received family-centered care (composite)||Family-centered care that respects, listens to, and partners with parents (composite)
In the last 12 months, how often did (child’s) doctors or other health care providers:
|Enrollees’ rating of their health care||Caregiver has access to medical interpreter when needed
|Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)||Percent of children with and without special health care needs having a medical home (composite)
Foundational Standard 3: Insurance Coverage Is Comprehensive and Affordable
Standard Domain 1: Identification, Screening, Assessment, and Referral
Identification, Screening, Assessment, and Referral
|National Survey of Children’s Health||CAHPS Health Plan Survey 5.0||Pediatric Quality Measures Program||Title V NOM (Data from NSCH)||CMS Annual Medicaid EPSDT Participation Report||NewSTEPs|
|Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)||Doctor talked about how child feeling, growing, or behaving||Pediatric Medical Complexity Algorithm||Percent of children with special health care needs (CSHCN), ages 0 through 17, who receive care in a well-functioning system (composite)||Screening ratio||Percent of disorders detected by newborn screening with a confirmed diagnosis by an appropriate medical professional|
|PHDS-PLUS||CMS Child Core Set||HEDIS||HEDIS, CMS Child Core Set||FECC, PQMP||Title V NPM (Data from NSCH)||CMS Annual Medicaid EPSDT Participation Report||NewSTEPs|
|Anticipatory guidance and parental education provided by doctors or other health care providers (composite)
In the last 12 months did (child’s) doctors or health providers:
Have you fill out a survey or checklist about activities that (child) may be able to do such as certain physical tasks, whether (child) can draw certain objects, or ways (child) can communicate with you?
|Dental sealants for 6–9 year-old children at elevated caries risk||Annual dental visit||Childhood immunization status (composite)||Electronic health record has immunization and medication information||Percent of children, ages 9 through 35 months, receiving a developmental screening using a parent-completed screening tool||Total eligibles receiving at least one initial or periodic screen||Timeliness of newborn screening activities (composite)|
|National Survey of Children’s Health||PHDS-PLUS||Pediatric Quality Measures Program||FECC, PQMP||IDEA Child Count|
|Problems getting needed referrals, all children||Follow-up for children at risk for developmental, behavioral, or social delays (composite)
In the last 12 months did (child’s) doctors or health providers do any of the following…
|Follow-up referral after positive developmental screen||Care coordinator assisted with specialist service referrals||Number and percent of infants and toddlers receiving early intervention services under IDEA, Part C, by age and state.|
Standard Domain 2: Eligibility and Enrollment in Health Coverage
|Eligibility and Enrollment in Health Coverage||Applicable Measures|
|National Survey of Children’s Health||CAHPS Health Plan Survey 5.0|
|Percent of children with special health care needs (CSHCN) receiving care in a well-functioning system (composite)||Health plan customer service (composite)|
Standard Domain 3: Access to Care
Access to Care
Access to Specialist Providers
|National Survey of Children’s Health||CAHPS Health Plan Survey 5.0||CAHPS Chronic Condition Supplement||FECC, PQMP||Title V NOM (Data from NSCH)|
|Received care from a specialist doctor other than a mental health professional during the past 12 months||Respondent got child an appointment with specialists as soon as needed||Access to specialized services (composite)||Care coordinator assisted with specialist service referrals
|Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling
Standard Domain 4: Medical Home and Care Coordination
Medical Home Management
|CAHPS Health Plan Survey 5.0||PICS||FECC, PQMP|
|How well the child’s doctors communicate (composite)||Care team members (CTMs) had access to same medical record||Caregiver has access to medical interpreter when needed|
Preventative, Primary, and Specialty Care
|National Survey of Children’s Health||PHDS-PLUS||HEDIS||HEDIS, CMS Child Core Set||CAHPS Health Plan Survey 5.0||CAHPS Chronic Condition Supplement||Title V NPM (Data from NSCH)||Title V NOM (Data from NSCH)|
|Children who received any type of medical care during the past 12 months||Percent of children with a mental/behavioral condition who receive treatment or counseling||Annual dental visit||Childhood immunization status (composite)||Rating of specialist||Composite: access to specialized services||Percent of children, ages 1 through 17 who had a preventive dental visit in the past year||Percent of children, ages 3 through 17, with a mental/behavioral condition who receive treatment or counseling|
|National Survey of Children’s Health||PHDS-PLUS||CAHPS Chronic Condition Supplement||PICS||FECC, PQMP|
|Effective care coordination, all children (composite)||Coordination of care for children requiring multiple types of health care services or seeing more than one health care provider (composite)
|Coordination of care and services (composite)
|Communication with care team members (CTMs) (composite)||Has care coordinator|
Standard Domain 5: Community-Based Services and Supports
|Community-Based Services and Supports||The National Survey of Children’s Health||CAHPS Chronic Condition Supplement||FECC, PQMP||Title V NOM (Data from NSCH)||IDEA Child Count|
|Family frustrated in efforts to get services for their children during the past 12 months||In the last 6 months, did you get the help you needed from your child’s doctors or other health providers in contacting your child’s school or daycare?||Care coordinator helped to obtain community services||Number and percent of infants and toddlers receiving early intervention services under IDEA, Part C, by age and state|
Standard Domain 6: Transition to Adulthood
|Transitions to Adulthood||Applicable Measures|
|The National Survey of Children’s Health||FECC, PQMP||Adolescent Assessment of Preparation for Transition, PQMP
|Title V NOM (Data from NSCH)|
|Children received care in a well-functioning system, age 12-17 years (composite)||Child has written transition plan||Counseling on transition self-management (composite)
In the last 12 months:
Did you and this provider talk about a specific plan for changing to a new provider who treats mostly adults?
Standard Domain 7: Health Information Technology
|Health Information Technology||Applicable Measures|
|Care team members (CTMs) had access to same medical record||Electronic health record has immunization and medication information|
Creating a comprehensive, high quality system of care for children and youth with special health care needs (CYSHCN) is a key priority for many state health policy leaders. Key national stakeholders participating in the National Consensus Framework for Improving Quality Systems of Care for Children and Youth with Special Health Care Needs project identified optimal capacity and performance benchmarks for systems of care serving CYSHCN, resulting in the National Standards for Systems of Care for CYSHCN, to help state leaders transform and improve systems of care for CYSHCN and their families. Since its publication in 2014, the National Standards have been used by national, state, and local stakeholder groups, including state Title V CYSHCN programs, health plans, state Medicaid and CHIP agencies, pediatric provider organizations, children’s hospitals, insurers, health services researchers, families, consumers, and others.
Nearly 20 percent of all US children up to 18 years (more than 14 million) have chronic and/or complex health care needs (e.g., asthma, diabetes, spina bifida) requiring health care services and supports beyond what children require normally. Among them, about 3 million children have complex health care needs (representing about 0.5 percent of all US children and their numbers are growing) and require the highest levels of need.
Quality measurement is a critical component of many state programs, including Medicaid, the Children’s Health Insurance Program (CHIP), and state Title V CYSHCN programs. The federal Title V MCH Services Block Grant program requires states to report annually on a set of National Performance Measures and the Centers for Medicare & Medicaid Services asks states to voluntarily report on the Child Core Set of measures on an annual basis. In 2024, states will be required to report on all measures in the Child Core Set. Measuring the quality of care that CYSHCN receive is a growing priority for state and national health policymakers and public and private health plans and providers. As states implement health system reforms, including linking performance and quality to payment for services, interest in quality measurement for programs serving specialized populations, including children with chronic and complex health care needs, is increasing. States’ increased use of Medicaid managed care delivery systems to serve CYSHCN also presents an opportunity to hone and refine quality measurement strategies. Identification of data and quality measures that align with the National Standards can help states better implement the standards and evaluate how well their systems of care are serving CYSHCN.
This measures compendium is designed to provide states and other key stakeholders with a reference tool that highlights relevant quality measures aligned with key domains of the National Standards for CYSHCN. It compiles current data and quality measures – and avoids creating new measures — given the availability of numerous existing measure sets and states’ limited capacity and infrastructure to design or test new measures. The measures listed in this compendium summarize relevant measures from the most applicable and widely used measure sets, and are not intended to be an exhaustive list of all available measures or to provide quality measures that focus on specific medical conditions.
 “2016 National Survey of Children’s Health,” Child and Adolescent Health Measurement Initiative, Data Resource Center for Child and Adolescent Health, accessed April 2018, www.childhealthdata.org.
 Turchi R and Mann M. “Building a Medical Home for Children and Youth with Special Health Care Needs,” in Handbook of Children With Special Health Care Needs, ed. David Hollar, (Philadelphia: Springer Publishing, 2012), 399–418.
 Kate Honsberger and Karen VanLandeghem, 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).
 Becky Normile, et al. State Strategies for Medicaid Quality Improvement for Children and Youth with Special Health Care Needs (Washington, DC: National Academy for State Health Policy, November 2017).
The National Academy for State Heath Policy (NASHP), in partnership with the Association of Maternal and Child Health Programs (AMCHP), conducted an environmental scan of measures from the following sources: national data measures and quality measurement sets, regularly conducted national and health plan surveys, patient survey instruments, and National and State Title V Performance and Outcome Measures as required by the federal Title V MCH Services Block Grant program. Following a review of these sources, key measure sets that align with the National Standards were identified and relevant measures from these sets were compiled in an index of more than 250 measures. When selecting relevant measures, the goal was to cast a wide net so that states could identify the measures that most closely met their needs. The index also listed key information about each measure, including the organization who created or maintains the measure, target population, level of analysis, and data source. Each individual measure was then reviewed to determine which National Standard domain (or domains) it should be attributed to. A description of the resulting measure sets is described in “How to Use This Compendium.”
This resource was developed by Hannah Eichner, Miara Handler, Kate Honsberger, and Becky Normile from NASHP and Paige Bussanich from AMCHP. The developers would like to acknowledge guidance and support from Karen VanLandeghem (NASHP) and Kate Taft and Cheryl Clark (AMCHP).
Funded by a grant from the Lucile Packard Foundation for Children’s Health, Palo Alto, California.