National Survey Of Children With Special Health Care Needs Research Articles

The Impact of Gaps in Health Insurance Coverage on Immunization Status for Young Children

To examine the impact of full-year versus intermittent public and private health insurance coverage on the immunization status of children aged 19-35 months. 2001 State and Local Area Integrated Telephone Survey's National Survey of Children with Special Health Care Needs (NS-CSHCN) and the 2000-2002 National Immunization Survey (NIS). Linked health insurance data from 2001 NS-CSHCN with verified immunization status from the 2000-2002 NIS for a nationally representative sample of 8,861 nonspecial health care needs children. Estimated adjusted rates of up-to-date (UTD) immunization status using multivariate logistic regressions for seven recommended immunizations and three series. Children with public full-year coverage were significantly more likely to be UTD for two series of recommended vaccines, (4:3:1:3) and (4:3:1:3:3), compared with children with private full-year coverage. For three out of 10 immunizations and series tested, children with private part-year coverage were significantly less likely to be UTD than children with private full-year coverage. Our findings raise concerns about access to needed immunizations for children with gaps in private health insurance coverage and challenge the prevailing belief that private health insurance represents the gold standard with regard to UTD status for young children.

The Influence of Health Insurance on Parent’s Reports of Children’s Unmet Mental Health Needs

The purpose of this study was to examine the prevalence of unmet mental health needs in children identified by parents as having long-term emotional and behavioral problems, to identify the characteristics of these children, and to evaluate the influence of health insurance status and type on the odds of reporting unmet mental health needs. We used the National Survey of Children with Special Health Care Needs (NSCSHCN) to estimate the prevalence of unmet mental health needs among children with long-term emotional/behavioral conditions. Using logistic regression models, we also assessed the independent impact of insurance status and type on unmet needs. Analyses indicated that of the nearly 67% of children who needed mental health care or counseling in the previous 12 months, 20% did not receive it. Moreover, parents of uninsured children were more likely to report unmet mental health needs than insured children. Parents of children covered by public health insurance programs (Medicaid, Children Health Insurance Program-CHIP, Title V, Military, Native American) were less likely to report unmet mental health needs than those with children covered by private health insurance plans. Results from this study suggest a need for expansion of health insurance coverage to children especially those with long-term mental health conditions. It also suggests a need for parity between mental and physical health benefits in private health insurance.

Unmet Needs for Specialty, Dental, Mental, and Allied Health Care among Children with Special Health Care Needs: Are There Racial/Ethnic Disparities?

We examined racial/ethnic disparities in unmet specialty, dental, mental, and allied health care needs among children with special health care needs (CSHCN) using data on 38,866 children in the National Survey of CSHCN. Compared with White CSHCN, Black CSHCN had significantly greater unmet specialty (9.6% vs. 6.7%), dental (16% vs. 8.7%), and mental (27% vs. 17%) health care needs. Hispanic CSHCN had greater unmet dental care needs (15.8% vs. 8.7%). Black females had greater unmet mental health care needs than other groups (41% vs. 13-20%). Most disparities disappeared after multivariate adjustment. Significant risk factors for unmet health care needs included uninsurance, having no personal doctor/nurse, poverty, and condition stability and severity. Eliminating unmet specialty, dental, and mental health care needs for all CSHCN, and especially minority CSHCN, may require greater efforts to reduce poverty and increase insurance coverage among CSHCN, better mental health care assessment of Black female CSHCN, and ensuring all CSHCN have a medical home.

Unmet Need among Children with Special Health Care Needs in Massachusetts

We partnered with a Massachusetts family workgroup to analyze state level data that would be most useful to consumers and advocates in Massachusetts. Massachusetts' and US data from the 2001 National Survey of Children with Special Health Care Needs (NSCSHCN) were analyzed. We examined types of need and prevalence of unmet need for all CSHCN and for more severely affected CSHCN. We also correlated unmet need to child and family characteristics using multivariate logistic regression. In Massachusetts, 17% of CSHCN and 37% of children more severely affected did not receive needed care. CSHCN who were uninsured anytime during the previous year were nearly 5 times more likely to experience an unmet need (OR = 4.95, CI: 1.69-14.51). Children with more functional limitations (OR = 3.15; CI: 1.59-6.24) and unstable health care needs (OR = 3.26; CI: 1.33-8.00) were also more likely to experience an unmet need. Receiving coordinated care in a medical home (OR = 0.46; CI: 0.23-0.90) was associated with reduced reports of unmet need. With input from families of CSHCN, researchers can direct their analyses to answering the questions and concerns most meaningful to families. We estimate that 1 in 6 CSHCN in Massachusetts did not receive needed care, with more than 1 in 3 CSHCN with a more severe condition experiencing an unmet need. Enabling factors were predictors of unmet need suggesting solutions such as expanding insurance coverage and improving services systems for CSHCN.

What is the Prevalence of Children with Special Health Care Needs? Toward an Understanding of Variations in Findings and Methods Across Three National Surveys

To compare and consider sources of variation in the prevalence and characteristics of children with special health care needs (CSHCN) identified using the CSHCN Screener across the 2001 National Survey of Children with Special Health Care Needs (NS-CSHCN), the 2003 National Survey of Children's Health (NSCH) and the 2001-2004 Medical Expenditures Panel Surveys (MEPS). For each survey, national prevalence rates and the demographic, health and health need characteristics of CSHCN age 0-17 years were estimated and compared. The stability of CSHCN state prevalence rankings between the NS-CSHCN and NSCH was assessed. Logistic regression analysis produced adjusted odds of identification for subgroups of children. CSHCN Screener sampling and administration were profiled across eight methodology parameters for each survey. Compared to the NS-CSHCN (12.8%), CSHCN prevalence for children age 0-17 years was 4.8 points higher for the NSCH (17.6%) and 6.0-6.5 points higher across the four 2001-2004 MEPS datasets (18.8-19.3%). The adjusted probability of identification by child's demographic characteristics was stable across all datasets as were state prevalence rankings between the NS-CSHCN and the NSCH. CSHCN identified through the NS-CSHCN were slightly more likely to meet more than one CSHCN Screener criteria, to meet the "above routine need or use of services" criterion and to miss two or more weeks of school due to illness compared to the NSCH, suggesting that CSHCN with less complex and/or serious health consequences may not have been as likely to be identified through the NS-CSHCN. CSHCN prevalence did not change significantly between 2001 and 2004 MEPS, although some off-setting increases or decreases in the proportion of CSHCN meeting specific CSHCN Screener criteria occurred and reflects trends toward increased prescription medication use in children. When CSHCN Screener administration methods remained similar across years (2001-2004 MEPS), CSHCN prevalence rates were stable. When methods varied between surveys, CSHCN prevalence rates differed. These differences suggest that prevalence is best expressed as a range, rather than as a point estimate. However, once identified, characteristics and health needs of CSHCN were stable across surveys evaluated, each of which has unique strengths for purposes of policy and research.

Satisfaction with care and ease of using health care services among parents of children with special health care needs: the roles of race/ethnicity, insurance, language, and adequacy of family-centered care.

To examine whether racial/ethnic disparities exist in parental reports of satisfaction with care and ease of using health care services among children with special health care needs (CSHCN) and to identify factors associated independently with satisfaction with care and ease of use of health care services among CSHCN. We analyzed data for 38,886 CSHCN <18 years of age in the National Survey of CSHCN, conducted from 2000 to 2002. Outcome variables included perceived satisfaction with care and ease of service use. Covariates included sociodemographic factors, insurance, interview language, condition severity and stability, adequacy of family-centered care measures, and having a personal doctor/nurse. The prevalences of reported dissatisfaction with care and problems with ease of using services among parents of CSHCN were 8% and 25%, respectively. Black and Hispanic parents were significantly more likely than white parents to be dissatisfied with care (13% and 16% vs 7%) and to report problems with ease of service use (35% and 34% vs 23%). Hispanic/white disparities in satisfaction with care and ease of use of services disappeared only after multivariate adjustment for parental interview language. Black/white disparities in satisfaction with care disappeared after adjustments for adequacy of family-centered care measures, but black/white disparities in ease of using services persisted. The severity of the child's condition, lack of insurance, parental interview in Spanish, and inadequate family-centered care were associated significantly with dissatisfaction with care and problems with ease of using health care services. Policies and strategies that reduce language barriers, promote insurance coverage and family-centered care, and improve ease of use of services among minority CSHCN have the potential to reduce racial/ethnic disparities in satisfaction with care and to promote ease of use of services among families with CSHCN.

A Data Driven Process in Washington State to Improve Systems of Care for Children With Special Health Care Needs: The National Survey of CSHCN

The purpose of this article is to present strategies used in one state to engage public health stakeholders in the use of National Survey of Children With Special Health Care Needs (NS-CSHCN) results to improve systems of care for children with special health care needs (CSHCN). This is not a research report. Seven "CSHCN Road Shows" were conducted with 39 local health departments, five state agencies, five parent leaders, three managed health care plans, and 12 school nurses. These "CSHCN Road Shows" were used to present and validate Washington State findings from the NS-CSHCN, obtain input on additional topics for analysis and elicit ways of incorporating NS-CSHCN results into the state's MCH Five Year Needs Assessment. Overall, a majority of stakeholders reported a high level of interest in using state-level data from the NS-CSHCN for local community efforts. Uses included program planning, presenting data to local boards of health and other community agencies, and utilizing results as talking points with other partners on the needs and unmet needs of the population. The state Title V office used feedback from "CSHCN Road Show" participants to prioritize program-planning activities, initiate policy discussions, and incorporate feedback into the MCH Five Year Needs Assessment. State-level data from the NS-CSHCN are a rich source of information for driving improvements in systems of care, facilitating state and local program planning efforts, writing grants, and completing MCH Five Year Needs Assessment activities.

Financial Burden for Families of Children with Special Health Care Needs

We describe family finance-related burden experienced by families with children with special health care needs (CSHCN). The paper further seeks to describe correlates of family financial burden. We examined correlates of family finance-related burden using multivariate methods and the National Survey of CSHCN, a nationally representative cross-sectional survey of CSHCN. We also examined state-level correlations. Fully 40% of families with CSHCN, or 3,746,000 families nation-wide, experience financial burden related to their child's condition. Experiencing a finance-related problem is negatively associated with Maternal and Child Health Bureau (MCHB) indicators and positively associated with poor-child health status. States that better meet MCHB indicators generally have lower levels of family finance-related problems. Families with CSHCN have high levels of finance-related family problems. Development of appropriate systems of care appears to offer a mechanism for alleviating the financial burdens of these families.

Transition Planning for Youth With Special Health Care Needs: Results From the National Survey of Children With Special Health Care Needs

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. 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. 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. 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.

Health Care Access for Children With Special Health Care Needs in California

This study examines health care access for children with special health care needs (CSHCN) in California, one of the nation's most populous and diverse states. Data are from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a nationally representative survey of access for U.S. children fielded by the National Center for Health Statistics (NCHS). California CSHCN and those in California's Medicaid program are compared with CSHCN elsewhere on child health need, family enabling factors, health care enabling factors, system outcomes, and children's experiences with care. Multivariable analysis identifies family and health care factors associated with system outcomes and children's experiences with health care. California parents generally report poorer experiences with care, lower performance on systems outcomes, and fewer health care and family enabling factors. The magnitude of disparity is greatest for CSHCN in Medi-Cal, although lower-income privately insured CSHCN in California also have poorer access than their counterparts in other states. Among CSHCN in Medicaid, greater condition impact and adolescent age are associated with poorer experiences in California for most measures. Disparities between California and other states persist even adjusting for family and health care factors in multivariable analysis. Performance gaps in California stem from population differences and apparent administrative barriers. Several statewide initiatives are addressing system barriers through supports to providers and information to parents.

CSHCN in Texas: Meeting the Need for Specialist Care

Assuring the sufficiency and suitability of systems of care and services for children with special health care needs (CSHCN) presents a challenge to Texas providers, agencies, and state Title V programs. To meet the need for specialist care, referrals from primary care doctors are often necessary. The objective of this study was to describe the factors associated with the need for specialist care and problems associated with obtaining referrals in Texas. Bivariate and multivariate analyses were performed using the National Survey of Children with Special Health Care Needs (NS-CSHCN) weighted sample for Texas (n = 719,014) to identify variables associated with the need for specialist care and problems obtaining referrals for specialist care. Medical need of the CSHCN and sensitivity to family values/customs was associated with greater need for specialist care, and Hispanic ethnicity and lower maternal education were associated with less need. Medical need, amount of time spent with doctors and sensitivity to values/customs, living in a large metropolitan statistical area, and lack of medical information were associated with problems obtaining a specialist care referral. Findings revealed some similarities and differences with meeting the need for specialist care when comparing Texas results to other studies. In Texas, aspects of customer satisfaction variables, especially doctors' sensitivity to family values/customs and parents' not receiving enough information on medical problems, were significantly associated with problems obtaining specialist referrals. Findings indicate a need to further research relationships and communication among doctors, CSHCN, and their families.

Are Rates of Functional Limitations Associated with Access to Care? A State-Level Analysis of the National Survey of Children with Special Health Care Needs

Health-related services and compensatory mechanisms have a potential role in minimizing functional limitations and increasing quality of life among children with special health care needs (CSHCN). We examined whether rates of functional limitations among CSHCN in the 50 states and District of Columbia were associated with state-level characteristics that reflect access to such services among CSHCN. We aggregated child-level survey data from the National Survey of CSHCN to create 51 state-level estimates of the proportions who had functional limitations, had >/=1 unmet health needs, and lacked medical insurance coverage. State-level information about Medicaid spending per child enrollee in federal fiscal year 2000 was obtained from The Henry J. Kaiser Family Foundation website. We examined correlations between the percentages of CSHCN having functional limitations and each of the other state-level variables, and conducted multiple regression analyses that examined these associations while controlling for the statewide percentages of children living in poverty. The proportions of CSHCN with functional limitations were higher in states with higher rates of uninsured CSHCN (r = .49; p < .0001) and higher rates of CSHCN with unmet health needs (r = .62; p < .0001). Proportions of CSHCN with functional limitations were unrelated to per child Medicaid spending. These findings were robust when we controlled for percentages of children in poverty across states. Fewer unmet needs for health-related services are associated with lower statewide rates of functional limitations in CSHCN. As health care costs increase and state revenues decrease, CSHCN are at increasing risk of losing access to required services. Were this to happen we might expect an increase in the proportion of CSHCN who experience significant functional limitations. Thus, a key challenge is to provide CSHCN access to the amount and quality of health-related care they require to achieve their potential.

The National Survey of Children with Special Health Care Needs

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. 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. 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. 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.