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

Objectives: 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. Methods: 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. Results: 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. Conclusions: 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.     

Nutrition Screening for Children With Special Health Care Needs

Children with special health care needs represent a population at increased risk for poor nutritional status and inadequate nutritional support. Although proper nutrition is critical for the growth and development of all children, these children require careful monitoring and early identification of nutrition problems that may result from physical or developmental disabilities, drug-nutrient interactions, or chronic medical conditions. This study was an evaluation of a statewide nutrition screening and referral effort designed to identify the nutrition needs of young children with disabilities. Analysis of 465 screening forms revealed the most frequently identified feeding concern as intake of less than 16 oz or more than 32 oz of milk or formula. The majority of anthropometric data indicated slowed or impaired growth; however, 17% of the screenings indicated no anthropometric data. Even though 734 feeding concerns were identified, 91 % of the completed screening forms either did not make a referral to a nutritionist or had the section blank. Contingency tables and logistic regression were used to examine the variables on the screening form. Interviews and focus groups, with professionals involved in the screening and referral process, identified several issues for children birth to 3 years of age with special health care needs, including lack of a uniform statewide system of nutrition screening and a lack of referral to appropriate community-based nutrition services for intervention. Results indicated a coordinated follow-up system is necessary to ensure that children identified at nutritional risk will receive nutrition intervention services.     

Care Coordination with Schools: The Role of Family-Centered Care for Children with Special Health Care Needs

Objectives Family-centered care has been associated with positive outcomes for children with special health care needs. The purpose of the current study was to examine the relationship of family-centered care as associated with care coordination with schools and school absences (e.g., missed days) as reported by parents of children with special health care needs. Methods The current study utilized data from the National Survey of Children with Special Health Care Needs 2009-201 (N?=?40,242) to achieve this purpose. The National Survey of Children with Special Health Care Needs may be considered a nationally-representative and community-based sample of parent responses for children with special health care needs across the United States. Results Results from the current study indicate that family-centered care is associated with fewer absences and improved care coordination with schools when applicable. The variables of functional difficulties, poverty level, and the number of conditions were statistically controlled. Conclusions We suggest that the positive influence of family-centered care when practiced extends beyond the family and interacts with educational outcomes. We also suggest that the role of schools appears to be under-studied given the role that schools can play in family-centered care.     

Care Coordination for Children with Special Health Care Needs: Evaluation of a State Experiment

Care coordination (CC), a component of the medical home, may aid families who have children with special health care needs (CSHCN). Few data link CC to individual patient outcomes. To compare parent-reported outcomes for CSHCN receiving practice-based care coordination with those receiving standard care. This cross-sectional study examined two groups of CSHCN: one that received the services of a care coordinator for a year and one that did not. Parental surveys assessed: access to medical care, practice help and support, satisfaction with services, and parental mental and physical health. Associations between group status and parent-reported outcomes were assessed via regression analyses controlling for sociodemographic and health status variables. We also examined whether CC households who reported higher satisfaction with care had higher scores in the four domains. Parents in the care coordination group reported higher utilization of both primary care and specialist physicians, but did not report better practice help and support, better satisfaction with care, or better overall parental health. Parents in the care coordination group who reported being satisfied with their care rated their PCPs as more helpful than did the comparison families. Parents in this subgroup also reported significantly higher levels of care coordination than did parents in the comparison group. CSHCN appear to have higher PCP and specialist utilization when they receive supplemental care coordination. Additionally, those who are more satisfied with the care coordination they receive are happier with the assistance from their PCP and the overall care coordination provided.     

Underinsurance in Children with Special Health Care Needs: The Impact of Definition on Findings

To identify differences in groups of children with special healthcare needs (CSHCN) identified as underinsured by two alternate definitions and discuss implications for policy decisions based on using one definition over another. Secondary data from the National Survey of CSHCN 2005/2006 were analyzed. Only CSHCN who were continuously-insured for 12 months were included in analyses. We identified groups of underinsured CSHCN using two general definitions (“economic” and “attitudinal”) and three mutually-exclusive groups (identified by both definitions, identified by attitudinal but not economic, and identified by economic but not attitudinal). Key variables included demographics and condition characteristics. Different underinsurance rates were identified [attitudinal = 30.9 % (n = 11,470); economic = 22.7 % (n = 8,447)] with fair agreement by kappa score (κ = 0.3194; Z = 65.91; p > 0.0001). Differences across mutually-exclusive groups included family income ≥400 % FPL (attitudinal only = 34.2 %, economic only = 16.3 %, both = 18.4 %; p < 0.001) and high severity (attitudinal only = 42.5 %, economic only = 68.5 %, both = 69.9 %; p < 0.001). CSHCN who needed equipment/supplies/home health (OR = 1.31, p < 0.001) had increased odds of being identified as underinsured by the economic, but not attitudinal definition. CSHCN with private insurance had increased odds of being identified by attitudinal only or both definitions, but not by economic only (AO: OR = 1.41, p < 0.001; BOTH: OR = 2.36, p < 0.001). Despite overlap between the two definitions, choosing either one excludes some CSHCN, potentially underestimating the extent of underinsurance and masking important findings related to specific conditions characteristics. A definition that comprehensively identifies and describes underinsurance is vital to translating health insurance coverage expansion into benefit packages that meet complex health and service needs.     

Unmet Health Care Needs Among Children with Special Health Care Needs Enrolled in Tricare

TRICARE provides health care benefits to nearly two million children of active duty, retired, National Guard, and reserve service members. Child health advocates and congressional reports have raised questions regarding the adequacy access to care for children with military health benefits, particularly children with special health care needs (CSHCN). The objective of this study was to compare the health care experiences of CSHCN in TRICARE with those of CSHCN with other sources of health insurance. A cross-sectional analysis comparing unmet health care needs among CSHCN with TRICARE versus CSHCN with other sources of health insurance using nationally representative data from three years of the National Survey of Children’s Health (NSCH), 2016-2018. The NSCH includes a broad range of questions related to child health and health care to provide national level estimates, and the data allow for comparisons between insurance coverage groups and TRICARE. The survey data contain responses from over 100,000 parents or primary caregivers (parents) of children, representative of over 73 million children annually. This includes 804 children who were representative of approximately 367,000 CSHCN covered by TRICARE annually. Children with special health care needs. Overall, 21 percent (95% CI 19-24 percent) of parents of children covered by TRICARE reported their child had a special health care need, compared to 16 percent of children with commercial insurance (95% CI 15-16 percent) and 24 percent of children with public insurance (95% CI 23-25 percent). Eight percent of parents of CSHCN covered by TRICARE (95% CI 4-16 percent) reported any unmet health care needs in the prior 12 months, compared to 4 percent of CSHCN with private insurance (95% CI 4-5 percent) and 9 percent of CSHCN with public insurance (95% CI 8-11 percent). Among specific needs, 3 percent or fewer CSHCN covered by TRICARE had unmet needs for medical, dental, vision, hearing, or mental health care. Similarly, 5 percent or fewer reported difficulty or delays in getting services because of eligibility for coverage of the service, availability in the area, difficulty in getting an appointment, or cost. About 11 percent of parents of CSHCN covered by TRICARE reported usually or always being frustrated in getting needed services for their child during the prior 12 months, compared to 4 percent of those with private insurance and 9 percent of those with public insurance. About 12 percent of parents of CSHCN covered by TRICARE reported problems with paying for their child’s health care needs in the prior 12 months, compared to 23 percent of those with private insurance and 8 percent of those with public insurance. TRICARE is largely meeting the needs of the CSHCN for whom it provides benefits, but there are opportunities for improvement. CSHCN in TRICARE face higher rates of unmet needs than privately insured children, and their parents face higher levels of frustration in getting needed services. TRICARE should continue to work with families of CSHCN to identify specific unmet needs and sources of frustration with getting needed services.     

The Effect of Rural Residence on Dental Unmet Need for Children With Special Health Care Needs

BACKGROUND: Unmet need for dental care is the most prevalent unmet health care need among children with special health care needs (CSHCN), even though these children are at a greater risk for dental problems. The combination of rural residence and special health care needs may leave rural CSHCN particularly vulnerable to high levels of unmet dental needs. OBJECTIVE: To examine the effects of rural residence on unmet dental need for CSHCN. METHODS: We use the nationally representative National Survey of CSHCN Needs. We performed logistic regression to estimate the independent effects of rural residence on the likelihood of having an unmet dental need, using a measure of unmet need based on professional society recommendations and a measure based on parental report. RESULTS: Using either of the measures, a substantial percentage of CSHCN do not receive all needed dental care. Rural CSHCN are more likely to forgo needed dental care than their urban counterparts. Our results suggest that rural CSHCN have unmet needs for dental care due to both difficulty accessing care and because their parents do not recognize a need. CONCLUSION: Traditional access barriers for rural children, such as inadequate provider supply and lack of insurance, may increase unmet needs both directly and indirectly, through their effects on parents' perceptions of need. Reducing unmet needs for dental care in rural children with special needs will require addressing both access issues and parents' understanding of dental care need.     

Health-Related Quality of Life in Publicly Insured Children With Special Health Care Needs

Our objective was to examine health-related quality of life (HRQOL) in publicly insured children with special health care needs (CSHCN). Data were obtained from 183 caregivers of CSHCN (M = 10 years; 54% African American) in urban health clinics. CSHCN had poorer physical and psychosocial HRQOL than children in a normative sample. In regression analysis, children who had more health problems and more health visits in the previous 12 months had poorer physical HRQOL. Poorer psychosocial HRQOL was associated with more health problems and urban life stressors. Implications for practice and policy are discussed.     

Hardships of Raising Children With Special Health Care Needs (A Commentary)

Providing health care services for youngsters with special health care needs (SHCN) requires understanding of the medical circumstances that impact on the particular youngster, as well as an increased awareness and sensitivity to their particular family setting, and the issues that impact on the child, his/her parents, and siblings. To this end a review was carried out regarding the variable affects on these youngsters, such as poverty, parental, and family issues, as well as considerations of who is at risk for SHCN and demographics of individuals with SHCN who have unmet health needs. The particular need for dental services, the health service most commonly reported as needed, but not received, is highlighted.     

Care Coordination Impacts on Access to Care for Children with Special Health Care Needs Enrolled in Medicaid and CHIP

Children with special health care needs (CSHCN) often require services from multiple health care providers. This study’s objective is to evaluate whether CSHCN, enrolled in Medicaid or the Children’s Health Insurance Program (CHIP) and receiving care coordination services, experience improved access to mental and specialty health care services. Using data from the 2009–2010 National Survey of Children with Special Health Care Needs, two separate outcomes are used to evaluate children’s access to care: receipt of needed mental and specialty care and timely access to services. Using propensity score matching, CSHCN propensity for receiving care coordination services is derived and an assessment is made of care coordination’s impact on the receipt of health care and whether care is delayed. Results demonstrate that care coordination is positively associated with whether a child receives the mental and specialty care that they need, regardless of whether or not that coordination is perceived to be adequate by parents. However, receiving care coordination services that parents perceive to be adequate has a larger impact on the timeliness in which care is received. This study indicates that care coordination is associated with an increased ability for CSHCN to access needed mental and specialty care. States should consider offering care coordination services that support provider communication and fulfill families’ coordination needs to the CSHCN enrolled in their Medicaid and CHIP programs.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

An Evaluation of an Integrated Health Care Program for Children With Special Needs

This study was designed to evaluate a program integrating physical and mental health services for children with special health care needs. Clinical outcomes were assessed by comparing families in integrated clinics (N = 80) with families in traditional clinics (N = 36). Parents and children ages 8 to 16 completed a series of questionnaires to assess differences in child behavior and coping, parents' perceptions of child vulnerability, and parent well-being and coping. Demographic variables and child's health status were also assessed with questionnaires and controlled for in subsequent analyses. There were no differences between groups on demographic variables or health status, though children in the integrated clinics had been diagnosed at an earlier age. Parents in the integrated program reported significantly fewer behavioral symptoms than parents in the nonintegrated clinics. Significantly fewer children from integrated clinics were in the clinical range for poor school functioning compared to children in nonintegrated clinics. No differences emerged in coping or parent well-being. Results provide preliminary support for integrating health and mental health care services for children with special needs. Suggestions for improving future evaluation efforts and clinical practice are discussed.     

Healthy People 2010 Leading Health Indicators: How Children With Special Health Care Needs Fared

Objectives. We compared estimates for children with and without special health care needs (SHCN) at 2 time periods for national health objectives related to the Healthy People 2010 leading health indicators (LHIs).Methods. Data were from the 2003 and 2007 National Surveys of Children’s Health. Seven survey items were relevant to the LHIs and available in both survey years: physical activity, obesity, household tobacco use, current insurance, personal health care provider, past-month depressive symptoms, and past-year emergency department visits.Results. In 2003 and 2007, children with SHCN fared worse than those without SHCN with respect to physical activity, obesity, household tobacco exposure, depressive symptomology, and emergency department visits, but fared better on current insurance and having a personal health care provider. Physical activity and access to a personal health care provider increased for all children, whereas the absolute disparity in personal provider access decreased 4.9%.Conclusions. Significant disparities exist for key population health indicators between children with and without SHCN. Analyses illustrated how population-based initiatives could be used to frame health challenges among vulnerable populations.Now in its fourth generation, Healthy People (HP) is a strategic framework for achieving national goals for the health and well-being of all Americans. Each decade, progress toward these goals is monitored using evidence-based objectives that establish targets for the next 10 years.1–3 The close of the previous decade offered the opportunity to assess progress toward the 467 objective targets4–6 of HP 2010 and the initiative’s 2 overarching goals: (1) to increase quality and years of healthy life, and (2) to eliminate health disparities. With the release of HP 2020, this second goal reflects a 3-decade commitment to addressing health disparities, including those specific to individuals living with disabilities such as children with special health care needs (CSHCN).The Federal Maternal and Child Health Bureau (MCHB) defines CSHCN as those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition, and who also require health and related services of a type or amount beyond that required for children generally.7 Three survey systems, the National Survey of Children’s Health (NSCH), the National Survey of Children with Special Health Care Needs (NS-CSHCN), and the Medical Expenditure Panel Survey, use this definition. This definition, operationalized in a 5-item screener, reflects children who experience both a wide range of conditions and related consequences. As such, the definition differs from measures used to track some HP objectives, which focus primarily on functional- and activity-related limitations.8 This distinction is important because although all children living with a functional limitation would be considered as having a SHCN, not all CSHCN are functionally limited.9 The broader focus on both needs and consequences of health conditions allows for a more comprehensive analysis of this group within the context of the general pediatric population.Historically, measuring progress across HP 2010 objectives for CSHCN has been challenging for 3 reasons. First, although disability status was among the characteristics for which population-based objectives could be tracked for the purposes of monitoring progress toward the elimination of health disparities, estimates by disability status were only produced for selected indicators. In some cases, data on disability status were available but not analyzed or were determined by the sponsoring agency as not meeting the criteria for statistical reliability, quality, or confidentiality; HP estimates are published in accordance with the data protocols and analytic practices of the data provider or sponsoring agency of each data system. In others, data on disability status were not collected. Second, for those objectives where disability status was reported, separate estimates for subgroups within this population (e.g., children) were not systematically produced. As such, it was not possible to monitor progress for children with disabilities across all HP 2010 objectives. Third, estimates for individuals with disabilities might vary considerably by the definition of disability utilized. Because HP objectives are tracked using multiple data systems, comparisons across indicators for individuals with disabilities were not always available or comparable for all indicators.Efforts to track HP objectives for CSHCN and children with disabilities10 are illustrated in the Appendix (data available as a supplement to the online version of this article at http://www.ajph.org). HP 2010 tracked 2 objectives for CSHCN as defined by MCHB. These objectives included medical home access (objectives 16–22) and receipt of care in family-centered, comprehensive and coordinated systems (objectives 16–23).11 Six additional objectives were either tracked for children with disabilities using other definitions of disability or estimates for children with disabilities were produced as a subpopulation of interest. Because they were organized across different HP focus areas and relied on different data systems, these indicators provided a limited picture of the health and well-being of children with chronic conditions and related SHCN.Previous research on health disparities between children with and without SHCN or disabilities has focused predominantly on differences in health care access, utilization, and expenditures,12–16 and to a lesser extent on selected heath status indicators.13,17 However, comparisons relative to children without SHCN are ultimately important to monitoring programmatic efforts to improve outcomes and reduce the excess burden of ill health experienced by CSHCN. National efforts, including HP, are commonly used to support social policy development, implementation, and monitoring of efforts to address such public health challenges and disparities. Scholars examining policy processes and implementation through governmental agencies and related organizational structures describe such agenda-setting activities as important tools in the bureaucratic process.18–20 In the maternal and child health arena, Title V of the Social Security Act explicitly links the purpose of the national maternal and child health program to national health objectives, including HP. The dearth of comparable data for tracking CSHCN health status within the HP framework places stewards of public health programs for this population at a disadvantage. Furthermore, research indicating that CSHCN includes both a sizable21 and growing22 segment of the US pediatric population underscores the importance of efforts to address the health of this population within the larger framework of population-based public health initiatives like HP.The goal of this study was to provide a systematic assessment of key national health objectives, traditionally tracked for the population as a whole, but rarely reported or summarized for CSHCN using data from the NSCH. The NSCH is the only nationally representative survey that provides comparable data on the health and development of children with and without SHCN. We compared estimates for children with and without SHCN at 2 time periods for HP 2010 objectives selected according to the 2010 leading health indicators (LHIs). Disparities and temporal patterns were highlighted, and implications for practice and program planning were discussed.     

Adverse Experiences and Special Health Care Needs Among Children

Maternal and Child Health Journal - To evaluate the association of exposure to adverse childhood experiences (ACEs) and being a child with special health care needs (CSHCNs), and risks of specific...     

Differentiating Subgroups of Children with Special Health Care Needs by Health Status and Complexity of Health Care Needs

Objectives Our objective is to use the Children with Special Health Care Needs (CSHCN) Screener to identify subgroups of CSHCN differentiated by health status and complexity of need. Methods Data are from the National Survey of Children with Special Health Care Needs, 2001 and the National Survey of Children’s Health, 2003 (conducted by the Maternal and Child Health Bureau and the National Center for Health Statistics); and the 2001 and 2002 Medical Expenditure Panel Survey, conducted by the Agency for Healthcare Research and Quality. A broad array of variables measuring health status, complexity of need, and related issues are examined by subgroupings of CSHCN. Results Relative to other CSHCN, CSHCN with functional limitations or who qualify on more CSHCN Screener items have poorer health status and more complex health care needs. They more often experience a variety of health issues; their insurance is more often inadequate; the impact of their conditions on their families is higher; and their medical costs are higher. Conclusion In the absence of information on specific conditions, health status, or complexity of need, the CSHCN Screener alone can be used to create useful analytic subgroups that differ on these dimensions. The proposed subgroups, based on the type or number of CSHCN screening criteria, differentiate CSHCN by health status and complexity of health care needs, and also show differences in the impact of their conditions on their families, costs of their medical care, and prevalence of various health problems. Certification of ethical research: This material presents a secondary data analysis of a deidentified data set. Human subjects review was therefore not required for this study.     

Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs

The objective of this study is to examine the association of family-centered care (FCC) with specific health care service outcomes for children with special health care needs (CSHCN). The study is a secondary analysis of the 2005–2006 National Survey of Children with Special Health Care Needs. Receipt of FCC was determined by five questions regarding how well health care providers addressed family concerns in the prior 12 months. We measured family burden by reports of delayed health care, unmet need, financial costs, and time devoted to care; health status, by stability of health care needs; and emergency department and outpatient service use. All statistical analyses used propensity score-based matching models to address selection bias. FCC was reported by 65.6% of respondents (N = 38,915). FCC was associated with less delayed health care (AOR: 0.56; 95% CI: 0.48, 0.66), fewer unmet service needs (AOR: 0.53; 95% CI: 0.47, 0.60), reduced odds of ≥1 h/week coordinating care (AOR: 0.83; 95% CI: 0.74, 0.93) and reductions in out of pocket costs (AOR: 0.88; 95% CI: 0.80, 0.96). FCC was associated with more stable health care needs (AOR: 1.11; 95% CI: 1.01, 1.21), reduced odds of emergency room visits (AOR: 0.90; 95% CI: 0.82, 0.99) and increased odds of doctor visits (AOR: 1.25; 95% CI: 1.14, 1.37). Our study demonstrates associations of positive health and family outcomes with FCC. Realizing the health care delivery benefits of FCC may require additional encounters to build key elements of trust and partnership.     

Preparing Families of Children With Special Health Care Needs for Disasters: An Education Intervention

Children with special health care needs pose a special challenge in post-disaster response. Current research suggests that the general population is not adequately prepared for a major disaster event, with members of vulnerable populations even less prepared. The purpose of this study was to determine the short-term effectiveness of a brief patient education intervention aimed at increasing levels of disaster preparedness among families of special health care needs children. One hundred twenty-one families were randomly assigned to either intervention or intervention plus incentive group. Families were surveyed prior to the intervention using a previously published instrument on family preparedness, and at 30–45 days post-intervention. A Preparedness Score was assigned to each family based on the number of items completed on the preparedness instrument. Significant differences were found between pre- and posttest scores for families that received the intervention, regardless of whether or not an incentive item was provided. Posttest scores were significantly higher than pretest scores, suggesting that the intervention was successful in increasing short-term overall levels of family preparedness in this population.     

Managed Care Organizational Characteristics and Health Care Use among Children with Special Health Care Needs

Objective. To examine the relationship between features of managed care organizations (MCOs) and health care use patterns by children.
Data Sources. Telephone survey data from 2,223 parents of children with special health care needs, MCO-administrator interview data, and health care claims data.
Study Design. Cross-sectional survey data from families about the number of consequences of their children's conditions and from MCO administrators about their plans' organizational features were used. Indices reflecting the MCO characteristics were developed using data reduction techniques. Hierarchical models were developed to examine the relationship between child sociodemographic and health characteristics and the MCO indices labeled: Pediatrician Focused (PF) Index, Specialist Focused (SF) Index, and Fee-for-Service (FFS) Index, and outpatient use rates and charges, inpatient admissions, emergency room (ER) visits, and specialty consultations.
Data Collection/Extraction Methods. The telephone and MCO-administrator survey data were linked to the enrollment and claims files.
Principal Findings. The child's age, gender, and condition consequences were consistent predictor variables related to health care use and charges. The PF Index was associated with decreased outpatient use rates and charges and decreased inpatient admissions. The SF Index was associated with increased ER visits and decreased specialty consultations, while the FFS Index was associated with increased outpatient use rates and charges.
Conclusion. After controlling for sociodemographic and health characteristics, the PF, SF, and FFS indices were significantly associated with children's health care use patterns.     

Comparing States on Outcomes for Children with Special Health Care Needs

Objectives: To develop two alternative methods for comparing and ranking states on the health, health care, and well-being of children with special health care needs (CSHCN). Methods: Fifteen key indicators of CSHCN’s functional abilities, health insurance coverage, access to care, and the impact of their conditions on their families were identified from the 2001 National Survey of Children with Special Health Care Needs. An initial composite score for each state was created by averaging the state’s standardized scores for each of these indicators. Using linear regression analyses and standardized residuals, an adjusted composite score for each state was then created that accounted for demographic variables that differed by state and were related to the initial composite score. States were ranked based on the initial and adjusted composite scores. Results: The initial composite scores were related to population differences by poverty status, African-American race, and the prevalence of special health care needs. Compared to ranks based on the initial scores, ranks based on the adjusted scores shifted by 10 or more positions for half the states. Hawaii, Rhode Island, Arizona, Iowa, and North Dakota had the highest (“best”) adjusted scores. Conclusion: Adjustment to the initial composite scores permits states with different demographic compositions to be compared. The adjusted scores may also help raise awareness of CSHCN’s concerns in states where demographic compositions favorable to health outcomes mask the fact that these outcomes are only average (or worse) given the states’ demographic compositions.