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Designing Systems of Care that Work for Children with Special Health Care Needs

Family Participation & Satisfaction

Measuring family involvement in and satisfaction with systems of care for children with special health care needs (CSHCN) is an important performance outcome of the New Freedom Initiative. Several models of measuring family involvement and satisfaction with care are available.

Parent Participation

Parent advocacy groups play a major role in involving families in systems of care for CSHCN. One such group, Family Voices, has conducted three surveys to assess family satisfaction with health care for CSHCN:

  • Your Voice Counts, a national family survey, was conducted by Family Voices and Brandeis University in 1997. The responses provided valuable information regarding families' perspectives on health coverage, use of services, obstacles to services, coordination of care, satisfaction with care, the impact of CSHCN on a family, advice for other parents of CSHCN, and parents' advice to health plans. This information was published in a report by Family Voices that outlined these results and their implications for public policy, health plans, and providers.
  • Parent interviews with managed care organizations (MCOs) comprised the second survey. Family Voices parent leaders conducted interviews with 41 managed care plans across the country to learn about programs and policies and to share information about resources for CSHCN. Family Voices suggests that the survey results be used as a starting point for discussion between families and managed care plans to examine current systems of care and to improve programs and policies for CSHCN.
  • Families in Program and Policy was the third survey in which parent leaders conducted interviews with State Title V program directors. Information was collected on families' impact on programs and policies regarding CSHCN, participation in advisory councils, and the benefits of family involvement in program planning and oversight. The survey found that families' participation in the design, oversight, and measurement of systems of care for CSHCN has raised awareness about family involvement among program directors, allowed for measurement of features that families see as important, increased the relevance of family participation in the design and oversight of systems of care, created a potential for important change, and allows programs and systems to be more responsive to families' needs.

Parents Helping Parents (PHP), in Santa Clara County, California, is another model of parent involvement. The goal of this pilot project is to ensure that CSHCN receive high quality care by establishing hospital- and clinic-based family resource centers, staffed by parent liaisons, in the major institutions in the county. These liaisons provide a range of services, including:

  • Peer counseling.
  • Matching parents with parent mentors.
  • Dissemination of information.
  • Translation of medical terminology.
  • Training of medical staff and families.

By providing these services, the program helps parents to understand and use appropriate services for their children, participate as an equal partner in their child's health care team, and obtain information and peer counseling. These programs have been evaluated through parent and physician surveys, which find that both families and physicians believe that these programs are beneficial to all parties.

Measuring & Monitoring Project

The Early Intervention Research Institute's Measuring and Monitoring (M&M) Project is also working to develop and implement a national strategy for monitoring and reporting progress toward achieving community-based, integrated service systems for CSHCN and their families. The M&M project has the following objectives:

  • Identify current State-level measurement capacity.
  • Operationalize outcomes by developing measurable indicators.
  • Develop measurement strategies and tools.
  • Pilot measurement efforts in six States.
  • Report and disseminate results.

The results from the M&M project show that overall, most data available at the State level are from parent surveys. Outcome monitoring of family involvement and satisfaction can be measured through families' reports of their satisfaction with the quality of their children's primary care, access to referrals for specialty care, and care coordination. However, many States may need assistance in developing data sources for these important indicators.

Family satisfaction with systems of care for CSHCN is a critical indicator of the quality of care received by CSHCN. In 2001, the Institute of Medicine released a report on the state of quality in health care in the United States. This report described a "quality chasm" and recommended a framework for evaluating the quality of care that assesses the effectiveness, safety, timeliness, patient-centeredness, efficiency, and equity of services in four categories: staying healthy, getting better, living with illness, and end of life. Traditionally, however, few measures have been available to assess these aspects of pediatric care.

Child Health Toolbox

In response to this gap, the AHRQ developed the Child Health Toolbox to facilitate measuring performance in child health service delivery. The toolbox is designed to help users answer the following questions in order to assess the quality of children's health programs:

  • How can you tell whether children are receiving quality health care?
  • How do you know when a health program is functioning effectively?
  • Where can you find tools to help answer these questions?
  • If the right tool is not available, how can you develop your own?

The toolbox contains information on using various surveys and measures such as the Consumer Assessment of Health Plans Survey (CAHPS®), AHRQ Quality Indicators, and HEDIS measures for children to aid in evaluating programs.

Once the quality of care has been measured, the task of using these findings to improve service delivery remains. The National Initiative for Children's Healthcare Quality (NICHQ) suggests that work be done in three areas to effect change:

  • Strategy: There must be clear leadership. Data must be collected to document the gap in services and to target opportunities for change.
  • Culture: To facilitate change, Learning Collaboratives are necessary, improvement partnerships must be made, and data must be presented.
  • Technique: A model for improvement must address the following questions:
    • What are we trying to accomplish?
    • How will we know that a change is an improvement?
    • What changes can we make that will result in an improvement?

To supplement this process of collaborative improvement, supplemental activities are suggested such as distance learning opportunities, the creation of continuous support, and linking local information to population-based data.

Washington State's Quality Improvement Effort

Washington State's Medicaid program is using quality monitoring data for quality improvement. In the effort to "do more with less," the agency has embarked on two new projects. The first is to use Children with Chronic Conditions Pre-Screening questions as part of CAHPS to identify CSHCN who use EPSDT services. Data show that many Medicaid children do not receive well-child exams, and that the Medicaid agency is unable to identify CSHCN within EPSDT records. The product of this project is an analysis of rates of well-child care for CSHCN in two age categories, a CSHCN Stakeholder Report describing the population of CSHCN and the quality of care they receive, and the development of quality improvement goals and measures for the care provided to CSHCN.

The second project, being conducted through a collaboration between the state Medicaid agency and the Department of Health, evaluates the usefulness of CAHPS data in providing information about CSHCN for purposes of program and policy development. This project would document similarities and disparities between CSHCN and those without special health care needs in the areas of:

  • Demographic characteristics.
  • Health service utilization.
  • Parent satisfaction with health plan and health services.
  • Medical home indicators.

This project also permits the analysis of the geographic distribution of CSHCN across the State, as well as a study of the differences in service use by populations of CSHCN identified using different definitions and screening tools. The final products anticipated for this project are a report describing target areas for education, target areas for program planning and resource development, and a comparison of findings to those of national survey efforts.


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