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New NASHP Tool Identifies Key Quality Measures for Children with Special Health Care Needs
Quality measurement is a critical component of state health programs, including Medicaid and State Title V CYSHCN programs that serve children and youth with special health care needs (CYSHCN). While quality measurement for children continues to lag behind that of adults, quality measurement efforts for children overall, and CYSHCN in particular, are gaining greater traction across the nation.
A new National Academy for State Health Policy compendium of data and quality measures provides a robust reference tool for states working to measure and improve their systems of care for CYSHCN.
The compendium compiles existing quality measures from 13 relevant measure sets and highlights the measures that address each core element in a system of care for CYSHCN. It includes some measure sets that are already widely used, such as the National Survey of Children’s Health, as well as some that are very applicable to systems of care for CYSHCN, but may not be commonly used by states. It also includes measures from the Centers for Medicare & Medicaid Services (CMS) Child Core Set. In 2024, state Medicaid agencies will be required to begin reporting all Child Core Set measures to CMS. This compendium summarizes these numerous, relevant measure sets in one place so states can easily select the measures that best meet their needs.
The measures compendium aligns with the National Standards for Systems of Care for Children and Youth with Special Health Care Needs, which describe the essential structure and process components of a comprehensive and quality system of care for CYSHCN. State officials can use the compendium to inform key decisions about which measures can help them evaluate how their states’ systems of care serve CYSHCN.
Improving quality of care for CYSHCN, including children with medical complexity, is a key priority for many state health policymakers. Nearly 20 percent of all US children (more than 14 million children) have a special health care need. Approximately 3 million of those children have complex medical conditions. Of children with medical complexity, two-thirds are enrolled in Medicaid, and they account for 34 percent of all Medicaid spending on children.
States face a number of challenges in measuring quality of care for CYSHCN, as outlined in the NASHP issue brief State Strategies for Medicaid Quality Improvement for Children and Youth with Special Health Care Needs. These challenges are compounded by the unique and varied needs of this population of children. For example, CYSHCN have extremely varied diagnoses. While there are numerous measures targeting specific medical conditions — for example, asthma medication management — many CYSHCN have less common disorders that are much lower in prevalence than what is needed for accurate and reliable quality measurement. Further, many measures do not capture major aspects of quality care defined by families, such as experience with accessing and receiving care.
States have launched numerous initiatives to reform how they deliver and pay for care through Medicaid, which include initiatives that reward providers for delivering high-quality and cost-effective care, as well as programs that contract with managed care organizations to manage beneficiaries’ care. States are using quality measurement as a central component of these reforms. This tool can help states understand the wide range of measures available as they work to refine their quality measurement strategies for CYSHCN.
Perspectives on Using a Rapid Monitoring System: A Report from the Effective Managed Behavioral Healthcare Program Monitoring Summit
This report looks at eight key findings of a group of state policy makers and other experts convened to discuss their experience in operating an Early Warning System (EWS) or a similar system. An EWS uses a limited set of measures and administrative processes to oversee the managed care behavioral health system and provide real-time, performance-based information to state, federal, and local governments; consumers; families; providers; advocates; and other key stakeholders.
| early_warning_system.pdf | 170.8 KB |
Assessment Instruments in 12 States
This report is a compilation and review of state long-term care assessment instruments and processes. The document identifies assessment instruments being used and reviews some of the variation across instruments and in the process for using them.
| CLE_assessment_longterm.pdf | 1.2 MB |
Evaluating Community-Based Children’s Health Promotion Programs: A Snapshot of Strategies and Methods
This report provides practical information that states and community groups can use to develop evaluation components for community-based projects that focus on children’s health promotion. Through an examination of seven representative projects, the report offers examples and lessons learned related to various aspects of evaluation, among them: design, process and partnerships, outcomes, and dissemination.
Programs may need to address underlying tensions that may exist between program administrators and evaluators when trying to determine the balance between the community’s interest in evaluation and the evaluator and funders’ concerns with rigorous evaluation methodologies. Being clear about the purpose of the evaluation, listening to stakeholder needs, and designing well-constructed evaluations can alleviate some of these concerns.
| community_health_promotion.pdf | 824.4 KB |
Key Measurement Issues in Screening, Referral, and Follow-Up Care for Young Children’s Social and Emotional Development
This report is designed to assist states in assessing the effectiveness of their efforts to strengthen mental health services for very young children. The paper is an outgrowth of the work conducted by the five states involved in the ABCD II Consortium, an initiative of NASHP and The Commonwealth Fund that seeks to improve the delivery of services needed by very young children to ensure their healthy mental development. All five states needed reliable and valid measures to inform implementation efforts and ongoing program evaluation.
This technical report, based on the work of the ABCD II states, is meant to provide tips and tools to other states interested in undertaking similar work and facing similar financial and data constraints. The report is designed, first, to examine issues in performance measurement that apply to all measures of the health care delivered to children, and second, to examine each of the specific measures developed by the ABCD II states as they sought to strengthen mental health services for very young children.
| key_measurement_issues.pdf | 149 KB |
Measuring and Evaluating Developmental Services: Strategies and Lessons from the ABCD II Consortium States
Since 2000, the National Academy for State Health Policy (NASHP) and The Commonwealth Fund have conducted state learning consortia – in the Assuring better Child Health and Development (ABCD) initiative – dedicated to improving the delivery of child development services to young children who are Medicaid beneficiaries. The work of the eight ABCD states has shown that state policies, especially Medicaid policies, can effectively promote improvements in the quality of preventive and developmental services provided to young children.
Five states – California, Illinois, Iowa, Minnesota, and Utah – participated in the ABCD II Consortium. One early issue faced by the ABCD II states was how to measure the effectiveness of their efforts to improve the delivery of mental health services for very young children. The five participating states needed reliable and valid measures to inform program implementation efforts, guide improvements and ongoing program evaluation, and demonstrate the value of the programs for sustained funding and focus.
Reliable and valid measures will only be collected if the measurement strategy is thoughtfully and carefully designed to ensure that the tools and methods accurately assess the objectives of focus.
The purpose of Measuring and Evaluating Developmental Services is to provide states that seek to implement efforts similar to those in the ABCD II initiative with information on:
• Methodologies and opportunities for evaluation measures related to screening children’s social and emotional development, referral, and follow-up care for children identified at risk.
• Real-world examples and lessons learned from the ABCD II states in their measurement efforts.
The approaches and strategies used across the ABCD II states were varied while focused on similar goals and objectives. Consequently, there is a core set of evaluation measures collected by all of the ABCD II states. Additionally, there are state-specific measures used to further capture each state’s policy and improvement efforts.
| Lessons from ABCD II | 923.4 KB |
For individuals living with complex, often chronic conditions, and their families, palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical mental and spiritual needs during difficult times. Now more than ever, there is growing recognition of the importance of palliative care services for individuals with serious illness, such as advance care planning, pain and symptom management, care coordination, and team-based, multi-disciplinary support. These services can help patients and families cope with the symptoms and stressors of disease, better anticipate and avoid crises, and reduce unnecessary and/or unwanted care. While this model is grounded in evidence that demonstrates improved quality of life, better outcomes, and reduced cost for patients, only a fraction of individuals who could benefit from palliative care receive it. 
