Assuring Adequate Health Insurance for Children With Special Health Care Needs: Progress From 2001 to 2009-2010.

OBJECTIVE: To report on coverage and adequacy of health insurance for children with special health care needs (CSHCN) in 2009-2010 and assess changes since 2001. METHODS: Data were from the National Survey of Children with Special Health Care Needs (NS-CSHCN), a random-digit telephone survey with 40,243 (2009-2010) and 38,866 (2001) completed interviews. Consistency and adequacy of insurance was measured by: 1) coverage status, 2) gaps in coverage, 3) coverage of needed services, 4) reasonableness of uncovered costs, and 5) ability to see needed providers, as reported by parents. Bivariate and multivariable analyses were conducted to assess factors associated with adequate insurance coverage in 2009-2010. Unadjusted and adjusted prevalence estimates were examined to identify changes in the type of insurance coverage and the proportion of CSHCN with adequate coverage by insurance type. RESULTS: The proportion of CSHCN with private coverage decreased from 64.7% to 50.7% between 2001 and 2009-2010, while public coverage increased from 21.7% to 34.7%; the proportion of CSHCN without any insurance declined from 5.2% to 3.5%. The proportion of CSHCN with adequate coverage varied over time and by insurance type: among privately covered CSHCN, the proportion with adequate coverage declined (62.6% to 59.6%), while among publicly covered CSHCN, the proportion with adequate insurance increased (63.0% to 70.7%). Publicly insured CSHCN experienced improvements in each of the 3 adequacy components. CONCLUSIONS: There has been a continued shift from private to public coverage, which is more affordable, offers benefits that are more likely to meet CSHCN needs, and allowed CSHCN to see necessary providers.

Optimizing health and health care systems for children with special health care needs using the life course perspective.

To date, life course research in maternal and child health has largely focused on elucidating fetal and early life influences on adult health and less on promoting the health of children with special health care needs (CSHCN). Consideration of life course theory (LCT) for CSHCN is especially important given their increasing prevalence and comorbidity, their disproportionate vulnerability to weaknesses or instability in the health care system, and the growing evidence linking child and adult health and quality of life. In this commentary we seek to advance the consideration of LCT for CSHCN. We (1) briefly summarize key issues and the importance of a life course approach for CSHCN; (2) present illustrative findings from population-based cross-sectional data that serve to generate hypotheses that can be more rigorously examined when population-based longitudinal data become available; and (3) discuss the application of life course principles as a driving force in the continued implementation and improvement of integrated systems of care for CSHCN.

State health care financing strategies for children with intellectual and developmental disabilities.

We provide the first descriptive summary of selected programs developed to help expand the scope of coverage, mitigate family financial hardship, and provide health and support services that children with intellectual and developmental disabilities need to maximize their functional status and quality of life. State financing initiatives were identified through interviews with family advocacy, Title V, and Medicaid organizational representatives. Results showed that states use myriad strategies to pay for care and maximize supports, including benefits counseling, consumer- and family-directed care, flexible funding, mandated benefits, Medicaid buy-in programs, and Tax Equity and Fiscal Responsibility Act of 1982 funding. Although health reform may reduce variation among states, its impact on families of children with intellectual and developmental disabilities is not yet clear. As health reform is implemented, state strategies to ameliorate financial hardship among families of children with intellectual and developmental disabilities show promise for immediate use. However, further analysis and evaluation are required to understand their impact on family and child well-being.

Progress in ensuring adequate health insurance for children with special health care needs.

OBJECTIVE: This article reports findings from the 2005-2006 National Survey of Children With Special Health Care Needs (NS-CSHCN) regarding the extent to which CSHCN have access to public or private health insurance that meets their needs. METHODS: The HRSA Maternal and Child Health Bureau's health insurance core outcome was measured on the basis of whether a child had public or private coverage at the time of survey; continuity of coverage during the previous 12 months; and adequacy of coverage. Bivariate and multivariate statistical methods were used to assess independent predictors of respondents who met the health insurance core outcome and the impact of meeting the core outcome on measures of access and financial burden. Comparisons with a referent sample of children who did and did not have special needs and were included in the 2001 NS-CSHCN are also presented. RESULTS: A total of 62.0% of CSHCN nationally met the health insurance core outcome in 2005-2006, up from 59.6% in 2001. Disparities by ethnicity and income remain, but some have narrowed, especially for Hispanic CSHCN. Children who did not meet the health insurance core outcome were more likely to have unmet needs and their families to experience financial problems. CSHCN were more likely to be insured than children without special needs but less likely to be adequately insured. CONCLUSIONS: Results of the survey demonstrate that although a growing number of CSHCN have continuous and adequate health insurance, additional effort is needed to improve the adequacy of that insurance, particularly for children in vulnerable subpopulations.

Benefits for employees with children with special needs: findings from the collaborative employee benefit study.

Approximately 13-15 percent of U.S. children have special health care needs. The demands of their caregiving can affect their parents' health and workplace performance. We interviewed forty-one U.S. employers and conducted focus groups with working parents in four U.S. cities to determine the extent to which employers understand the needs of these families and to identify opportunities for improving workplace benefits for these employees beyond health insurance. Employers saw value in improving workforce performance and employee retention through expanded benefits and indicated promising opportunities to improve their response to the needs of employees with children with chronic conditions.

Association between underinsurance and access to care among children with special health care needs in the United States.

OBJECTIVE: To examine the impact of underinsurance on access to care among children with special health care needs (CSHCN) in the United States. METHODS: Interviews were conducted by telephone with the families of 38866 CSHCN who were younger than 18 years using the 2001 National Survey of Children With Special Health Care Needs. The prevalence of underinsurance and its relationship to access to care and family financial problems was examined in this cross-sectional analysis. CSHCN were classified as underinsured when coverage was deemed inadequate to meet the child's needs. RESULTS: An estimated 12.8% of US children experienced a special health care need in 2001. Although 95% of CSHCN had some type of insurance coverage at the time of the interview, 32% were classified as underinsured. Underinsured CSHCN were disproportionately represented in low-income families and were significantly more likely than fully insured children to have unmet health needs, and their families were more likely to report difficulty in obtaining specialty referrals, experience financial problems, and report that the child's condition caused family members to reduce or stop work. Underinsured CSHCN seemed to be somewhat better off than CSHCN with no insurance coverage on these measures. CONCLUSIONS: Underinsured CSHCN represent an important and largely hidden underserved population.

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.

Health-Based Payment for HIV/AIDS in Medicaid Managed Care Programs.

In recent years, State Medicaid programs have begun adopting health-based payment systems to help ensure quality care for people living with human immunodeficiency virus (HIV) and acquired immunodeficiency syndrome (AIDS), and to ensure equity for the managed care organizations (MCOs) in which these people are enrolled. In this article, the authors discuss reasons why such payment systems are needed and describe AIDS-specific capitation rates that have been adopted in several State Medicaid waiver programs. The authors also examine comprehensive risk-adjustment systems both within Medicaid and outside the program. Several research questions needing further work are discussed.