Achieving family and provider partnerships for children with special health care needs.

BACKGROUND: During the past 2 decades, family-centered care has evolved as the standard of care for children with special health care needs. A major principle of family-centered care is a strong partnership between the family and provider, working together to address issues and barriers to accessing comprehensive care and related services. The federal Maternal and Child Health Bureau defines a positive family-provider partnership as a core program outcome. Our objective was to assess the extent to which families of children with special health care needs feel as though they are treated as partners in decision-making by their doctors. METHODS: We analyzed the 2001 National Survey of Children With Special Health Care Needs, a nationally representative telephone survey of caretakers for 38,866 children with special health care needs. Bivariate and multivariate statistical methods were used to assess the frequency of meeting the partnership core outcome, as well as the demographic and socioeconomic predictors of meeting core outcome. We also examined the effect of partnership on indicators of access and well-being for children with special health care needs. RESULTS: Among children with special health care needs, 85.8% of families reported usually or always feeling like a partner in their child's care. However, living in poverty, minority racial and ethnic status, absence of health insurance, and depressed functional ability placed children with special health care needs and their families at elevated risk of being without a sense of partnership. We found that sense of partnership was associated with improved outcomes across a number of important health care measures, including missed school days, access to specialty care, satisfaction with care, and unmet needs for child and family services. CONCLUSIONS: Results of the survey demonstrated that whereas most families of children with special health care needs feel they are partners in the care of their child, further work is needed, particularly for poor, uninsured, and minority children, as well as those with functional limitations. The survey results also demonstrate the importance of partnership; children whose care met the partnership core outcome experienced improved access to care and well-being.

American Academy of Pediatrics Newborn Screening Task Force recommendations: how far have we come?

The partnership of the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) for improving health care for all children has long been recognized. In 1998, the establishment of the Newborn Screening Task Force marked a major initiative in addressing the needs of the newborn screening system. At the request of HRSA/MCHB, the AAP convened the task force to ensure that pediatric clinicians assumed a leadership role in examining the totality of the newborn screening system, including the necessary linkage to medical homes. The task force's report, published in 2000, outlined major recommendations for federal, state, and other national partners in addressing the identified barriers and needed enhancements of the care delivery system. Today, manifestations of the task force's recommendations are evident, many of which occurred under the leadership of HRSA/MCHB and the AAP. These activities are detailed in this article, with a discussion of future progression toward a quality, consistent, coordinated system of care for children identified with positive newborn screening results, their families, and the child health professionals who care for them.

Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs.

OBJECTIVE: To describe the proportion of youth with special health care needs (YSHCN) who are receiving services for medical transitions and to describe which sociodemographic and health care-related factors are associated with receiving transition services. METHODS: We analyzed responses to questions about medical transitions from the 2001 National Survey of Children With Special Health Care Needs (NS-CSHCN). Parents or guardians of youth aged 13 to 17 years who screened positive for the survey were asked (1) whether they had discussed with health care providers how their child's health care needs might change in adulthood, (2) if they had a plan to address these changing needs, and (3) if their child's health care providers had discussed having their child eventually see a doctor who treats adults. Bivariate and multivariate associations were estimated to identify sociodemographic and health care factors related to receiving medical-transition services. RESULTS: Overall, 50% of respondents had discussed their child's changing health care needs with their physicians, although significantly fewer Hispanic youth compared with other youth reported these discussions. Youth who met criteria for a medical home were more likely to have discussed changing needs and to have a plan addressing these needs. Of those who had discussed changing needs, 59% had a plan to address these needs and approximately 42% had reported discussing shifting care to adult-oriented providers. Younger teens and non-Hispanic black children were less likely to have discussed changing providers. Fifteen percent of YSHCN met the Maternal and Child Health Bureau's core outcome for medical transitions. A multivariate logistic-regression model found that older age and having a medical home were significantly associated with increased odds of meeting the outcome measure. CONCLUSION: The proportion of YSHCN meeting the medical-transition outcome measure is quite low, particularly for youth from ethnic minorities. Higher rates are seen for older teens and those receiving care within a medical home. Significant efforts will be required to meet the proposed goal of all YSHCN receiving the services necessary to transition to adult health care.

Assuring adequate health insurance: results of the National Survey of Children with Special Health Care Needs.

OBJECTIVE: The purpose of this article is to report the findings of the 2001 National Survey of Children With Special Health Care Needs regarding the extent to which children with special health care needs (CSHCN) have access to public or private health insurance that meets their needs. METHODOLOGY: As part of its effort to develop systems of care for CSHCN, the US Maternal and Child Health Bureau established a health insurance core outcome. Successful attainment was measured on the basis of whether the child met 3 distinct components at the time of the interview: presence of public or private coverage; continuity of coverage over the previous 12 months; and adequacy of coverage. Adequacy of coverage was measured from the family's perspective of whether their insurance covered needed services, covered a reasonable share of costs, and allowed families to see the providers they felt were best for their child. Bivariate and multivariate statistical methods were used to assess independent predictors of respondents meeting the health insurance core outcome. RESULTS: Results of the survey indicated that 59.6% of CSHCN nationally met the health insurance core outcome using the 3 components of presence of insurance coverage, continuity of coverage, and adequacy of coverage. Poverty status, race/ethnicity, and functional ability were significant factors in whether a child met the health insurance core outcome as well as each of the 3 components. Of Hispanic and non-Hispanic black CSHCN, 45.2% and 57.6%, respectively, met the health insurance core outcome, compared with 62.5% of their white counterparts. Children with the most limited functional ability were 50% less likely to meet the health insurance core outcome than CSHCN without limitations. More than 10% of Hispanic CSHCN were uninsured at the time of the interview, and 20% of Hispanic CSHCN experienced gaps in coverage. Although insurance met the needs of most families, more than one fourth of families reported that uncovered costs were not reasonable. Children who did not meet the health insurance core outcome were also more likely to have unmet needs. CONCLUSIONS: Results of the survey demonstrated that although the majority of CSHCN have adequate health insurance, additional work is needed to improve the adequacy of insurance, particularly for children below the poverty line, Hispanic children, and children with the most limited functional ability. The survey results also demonstrated the importance of continuous and adequate health insurance, because children who met the health insurance core outcome had fewer unmet needs.

Prevalence and characteristics of children with special health care needs.

BACKGROUND: Children with special health care needs (SHCNs) are an important population from health care services, economic, and policy perspectives. However, until recently, no national data on their prevalence and health care service needs that use a commonly accepted definition have existed. OBJECTIVE: To provide national estimates of the number of children with SHCNs and their characteristics, including an assessment of how well their needs are being met. SETTING: The United States. PARTICIPANTS: Interviews were conducted by telephone with the families of 38 866 children with SHCNs younger than 18 years using the State and Local Area Integrated Telephone Survey platform developed by the Centers for Disease Control and Prevention, Atlanta, Ga. MAIN OUTCOME MEASURES: Prevalence of SHCNs, demographic and socioeconomic correlates of SHCNs, access to care, satisfaction with care, and impact on the family. RESULTS: An estimated 12.8% of US children experienced an SHCN in 2001. Prevalence was highest among boys, school-age children, and children in lower-income families. A substantial minority of these children experienced unmet health needs (17.7%) or lacked critical elements of family-centered health care (33.5%). The impact on families was pronounced, as 20.9% reported their child's health care caused financial problems, and 29.9% reported cutting back or quitting work because of their child's condition. These adverse child- and family-level impacts were concentrated among low-income and uninsured children with SHCNs. CONCLUSIONS: Children with SHCNs and their families represent an important underserved population. In addition, substantial disparities are present in access, satisfaction, and family impact.

Access to the medical home: results of the National Survey of Children with Special Health Care Needs.

OBJECTIVE: The purpose of this article is to report the findings of the National Survey of Children With Special Health Care Needs regarding parent perceptions of the extent to which children with special health care needs (CSHCN) have access to a medical home. METHODS: Five criteria, selected to reflect the characteristics of a medical home as defined by the American Academy of Pediatrics (AAP) policy statement on the medical home, were analyzed to describe the extent to which CSHCN receive care characteristic of the medical home concept. These criteria included having 1) a usual place for sick/well care, 2) a personal doctor or nurse, 3) no difficulty in obtaining needed referrals, 4) needed care coordination, and 5) family-centered care received. Items from the Survey were selected and clustered to characterize each of the 5 components. Criteria for each item were established with the requirement that the criteria must be met for all items in a component to receive credit for the component. RESULTS: Results of the survey indicate that 1) approximately half of CSHCN receive care that meets all 5 components established for medical home; 2) most CSHCN have a usual source of care and a personal doctor or nurse, but other components of the medical home, especially elements of care coordination and family-centered care, are lacking; 3) access to a medical home is significantly affected by race/ethnicity, poverty, and the limitations imposed on daily activity by the child's special health care need; and 4) parents of children who do have a medical home report significantly less delayed or forgone care, significantly fewer unmet health care needs, and significantly fewer unmet needs for family support services. The 5 components described represent major characteristics of the comprehensive care model recommended for all children by the AAP. CONCLUSIONS: The findings suggest that although some components of the medical home concept have been achieved for most CSHCN, the comprehensive care model described by the AAP policy statement on the medical home is not yet in place for a significant number of CSHCN and their families.

Implementing community-based systems of services for children and youths with special health care needs: how well are we doing?

OBJECTIVE: To provide a baseline measure of the proportion of US children who meet the Maternal and Child Health Bureau's core outcomes for children with special health care needs (CSHCN). Those core outcomes include the following: 1) families of CSHCN will partner in decision making and will be satisfied with the services that they receive; 2) CSHCN will receive coordinated, ongoing comprehensive care within a medical home; 3) families of CSHCN will have adequate private and/or public insurance to pay for the services that they need; 4) children will be screened early and continuously for special health care needs; 5) community-based service systems will be organized so that families can use them easily; and 6) youths with special health care needs will receive the services necessary to make transitions to adult life, including adult health care, work, and independence. METHODS: A national household survey was conducted using telephone interviews. We analyzed data on 38,866 CSHCN included in the 2001 National Survey of CSHCN and 13,579 children included in the 2001 National Health Interview Survey. We assessed the proportion of US children who met each of the 6 core outcomes for CSHCN using data from 2 surveys. RESULTS: Success rates ranged from 6% (the core outcome on successful transition to adulthood) to 74% (the core outcome on organization of the service system). For 5 of the 6 core outcomes, success rates exceeded 50%. CONCLUSION: Our results indicate that, for the most part, the United States is well positioned to meet the 6 core outcomes. However, much more work lies ahead before success can be claimed. This is especially true for the core outcome on transition to adulthood, for which only 6% of children in the target population are now meeting this goal.

The national survey of children with special health care needs.

CONTEXT: The federal and state-level Children with Special Health Care Needs (CSHCN) programs are vested with the responsibility for planning and developing systems of care for children with special health care needs. To support achievement of this goal, the federal Maternal and Child Health Bureau (MCHB), in partnership with the National Center for Health Statistics (NCHS), has developed a new survey that will provide uniform national and state data on the prevalence and impact of special health care needs among children. PURPOSE: The National Survey of CSHCN is designed to produce reliable state- and national-level estimates of the prevalence of special health care needs using MCHB's definition of CSHCN. It will also provide baseline estimates for federal and state Title V Maternal and Child Health performance measures, for Healthy People 2010 national prevention objectives, and for each state's Title V needs assessment. In addition, it will provide a resource for researchers, advocacy groups, and other interested parties. It is anticipated that this survey will be repeated periodically, thereby making trend analysis possible. METHODS: This survey is being conducted using the State and Local Area Integrated Telephone Survey mechanism, which shares the random-digit-dial sampling frame of the National Immunization Survey (sponsored by the National Immunization Program and NCHS). Using the CSHCN Screener, developed under the auspices of the Foundation for Accountability, 750 children with special health care needs will be identified and selected from each state and from the District of Columbia. Parents or guardians of these children then complete a comprehensive battery of questions on demographics, health and functional status, health insurance coverage, adequacy of health insurance coverage, public program participation, access to care, utilization of health care services, care coordination, satisfaction with care, and the impact of the special need on the family. Data collection began in October 2000 and will continue through March 2002. Summary reports and electronic data files will be available to the public within 6 to 12 months following completion of data collection. CONCLUSIONS: The National Survey of CSHCN will offer a unique data source for individuals and organizations interested in understanding and improving service delivery for CSHCN. It is an accomplishment that reflects the contributions of state and federal Title V programs, family organizations, provider organizations, health services researchers, and the broader maternal and child health community.