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BACKGROUND: Controversy exists in the literature about whether dental care needs, use and expenditures differ between children with and without special health care needs (SHCN).
METHODS: The authors used data from the 2005 Medical Expenditure Panel Survey (MEPS) for children younger than 18 years. The MEPS questionnaire included the Children with Special Health Care Needs Screener, which defines a child as having SHCN if he or she meets at least one of five specific criteria. Using bivariate and multivariable regression analyses, the authors evaluated the effect of SHCN on unmet dental care needs, type of dental care received and average dental care expenditures.
RESULTS: Children with special health care needs (CSHCN) had an adjusted odds ratio (AOR) of 1.49 of having unmet dental care needs compared with children without SHCN, and CSHCN who met four or five screener criteria had an AOR of 2.2. CSHCN used more dental care services and were more likely to receive only nonpreventive care. Average dental care expenditures were not statistically different between CSHCN and children without SHCN, and there was variability among CSHCN in unmet dental care needs and use.
CONCLUSIONS: Unmet dental care needs are associated independently with SHCN status and complexity (based on the number of screener criteria the child met). The CSHCN populations in MEPS varied in their ability to obtain and use needed dental care services. Practice Implications. It is important to consider the diversity of CSHCN when developing systems of dental care for this population.
Bethell CD, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW.
Identifying children with special health care needs: development and evaluation of a short screening instrument. Ambul Pediatr. 2002;2(1):38-48.
BACKGROUND: Public agencies, health care plans, providers, and consumer organizations share the need to monitor the health care needs and quality of care for children with special health care needs (CSHCN). Doing so requires a definition of CSHCN and a precise methodology for operationalizing that definition.
RESEARCH OBJECTIVES: The purpose of this study was to develop an efficient and flexible consequence-based screening instrument that identifies CSHCN across populations with rates commensurate with other studies of CSHCN.
METHODS: The CSHCN Screener was developed using the federal Maternal and Child Health Bureau (MCHB) definition of CSHCN and building on the conceptual and empirical properties of the Questionnaire for Identifying Children with Chronic Conditions (QuICCC) and other consequence-based models for identifying CSHCN. The CSHCN Screener was administered to 3 samples: a national sample of households with children (n = 17985), children enrolled in Medicaid managed care health plans (n = 3894), and children receiving Supplemental Security Income (SSI) benefits in Washington State (n = 1550). The efficiency, impact of further item reduction, and flexibility of administration mode were evaluated. Rates and expected variation in rates across demographic groups of children positively identified by one or more of the 5 CSHCN Screener item sequences in each sample were examined and multinomial logistic regression analysis were conducted to evaluate the effect of child characteristics in predicting positive identification.
RESULTS: The CSHCN Screener took approximately 1 minute per child to administer by telephone and 2.1 minutes per household. During self-administration, over 98% of respondents completed each of the 5 CSHCN Screener item sequences, and respondents accurately followed each of the item skip patterns 94% of the time. Mailed surveys and telephone-administered surveys led to similar rates of positive identification in the same sample. Two Screener items would have identified 80%-90% of children positively identified as CSHCN across the study samples, although using only 2 items eliminates some children with more complex health needs. Rates of children identified by the CSHCN Screener varied according to age, sex, race/ethnicity, health status, and utilization of health services.
CONCLUSIONS: Results of this study indicate that the CSHCN Screener requires minimal time to administer, is acceptable for use as both an interview-based and self-administered survey, and that rates of children positively identified by the CSHCN Screener vary according to child demographic, health, and health care-need characteristics. The CSHCN Screener provides a comprehensive yet parsimonious and flexible method for identifying CSHCN, making it more feasible than existing measures for standardized use across public agencies, health care plans, and other users.
Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med. 2005;159(1):10-7. Erratum in: Arch Pediatr Adolesc Med. 2005 Apr;159(4):318..
OBJECTIVES: To provide the first nationally representative data on total health care expenses, out-of-pocket health care expenses, and information on the extent to which out-of-pocket expenses are financially burdensome for families of children with special health care needs (CSHCN). To also compare utilization and expenditure patterns for children with and without special health care needs.
DESIGN: We used data from the 2000 Medical Expenditure Panel Survey (MEPS). We present univariate, bivariate, and multivariate statistics on utilization and expenditures adjusted for the complex sample design.
PARTICIPANTS: The 2000 MEPS data set contains 6965 children younger than 18 years. Using the CSHCN definition adopted by the federal Maternal and Child Health Bureau and operationalized using the CSHCN Screener, 949 children (15.6%) were identified as children with special health care needs.
MAIN OUTCOME MEASURES: Compared with other children, CSHCN had 3 times higher health care expenditures (2099 dollars vs 628 dollars; P<.01). The 15.6% of CSHCN accounted for 42.1% of total medical care costs (excluding dental costs) and 33.6% of total health care costs (including dental costs) attributed to children in 2000. Families of CSHCN were best protected against inpatient hospital care expenses and most exposed to dental care expenses. Families of CSHCN experiencing high out-of-pocket expenses (exceeding 5% of family income) were approximately 11 times more likely to be from households with incomes below 200% of the federal poverty level (odds ratio, 10.9; 95% confidence interval, 3.55-33.76) than to be from families with incomes at or above 400% of the federal poverty level.
CONCLUSIONS: Families with CSHCN experience much higher expenditures, including out-of-pocket expenditures, than other children. Insurance plays an important protective role for families of CSHCN, but it still provides incomplete protection. Health policy changes that would extend the breadth and depth of insurance coverage are needed to ensure that all families of CSHCN are protected against burdensome expenses.
OBJECTIVES: To assess the prevalence of abuse and neglect among a population of children identified as a function of an existing disability, relate specific types of disabilities to specific types of abuse, and to determine the effect of abuse and neglect on academic achievement and attendance rates for children with and without disabilities.
METHOD: An electronic merger of school records with Central Registry, Foster Care Review Board, and police databases was followed by a detailed record review of the circumstances of maltreatment.
RESULTS: Analyses of the circumstances of maltreatment and the presence of disabilities established a 9% prevalence rate of maltreatment for nondisabled children and a 31% prevalence rate for the disabled children. Thus, the study established a significant association between the presence of an educationally relevant disability and maltreatment.
CONCLUSIONS: Children with disabilities are 3.4 times more likely to be maltreated than nondisabled peers. School professionals need to be cognizant of the high base rate of maltreatment among the children they serve. Disability status needs to be considered in national incidence studies of maltreatment.
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 inlower-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.
Kogan MD, Strickland BB, Blumberg SJ, Singh GK, Perrin JM, van Dyck PC. A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005-2006 Pediatrics 2008;122(6):e1149-58.
OBJECTIVES: We sought to examine the health care experiences of children with autism spectrum disorder and the impact of autism spectrum disorder on the family and to assess whether having a medical home is associated with less family impact.
METHODS: We used the 2005-2006 National Survey of Children With Special Health Care Needs to compare 2088 children with special health care needs, aged 3 to 17 years, reported by their parents to have autism spectrum disorder, with children with special health care needs with "other emotional, developmental, or behavioral problems" (excluding autism spectrum disorder; n=9534) and 26751 other children with special health care needs. We used weighted logistic regression to examine unmet needs for specific health care and support services, delayed care, no usual care source or personal physician, difficulty receiving referrals, and financial, employment, or time problems because of child's care.
RESULTS: Nationally, an estimated 535000 children have special health care needs and autism spectrum disorder, a prevalence of 86 per 10000 children aged 3 to 17 years. Among children with special health care needs, 5.6% have autism spectrum disorder. Compared with other children with special health care needs without emotional, developmental, or behavioral problems, children with special health care needs with autism spectrum disorder were more likely to have unmet needs for specific health care services, family support services, delayed or foregone care, difficulty receiving referrals, and care that is not family centered. Children with special health care needs with autism spectrum disorder were more likely to live in families that report financial problems, need additional income for the child's medical care, reduce or stop work because of the child's condition, spend >or=10 hours per week providing or coordinating care, and paid more than $1000 in the previous year for the child's care. The financial impacts of autism spectrum disorder were significantly more burdensome when children with special health care needs did not have a medical home.
CONCLUSIONS: Children with special health care needs with autism spectrum disorder are significantly more likely to have problems regarding access to care and unmet needs, and their families have greater financial, employment, and time burdens compared with other children with special health care needs. Receipt of primary care in a medical home may reduce these burdens.
Benedict RE. Quality medical homes: meeting children's needs for therapeutic and supportive services. Pediatrics. 2008;121(1):e127-34. Epub 2007 Dec 3.
OBJECTIVE: The objective of this study was to determine whether the quality of a medical home is associated with access to needed therapeutic and supportive services among children with special health care needs.
METHODS: Data from the 2000-2001 National Survey of Children With Special Health Care Needs were used in the analysis. The primary group of interest was children who were 0 to 17 years of age and needed therapeutic (n = 15,793) or supportive (n = 23,376) services. For each characteristic of a quality medical home, the percentage of children who needed and received therapeutic and supportive services was generated. Logistic regression was used to control for covariates while modeling the association between overall quality of a child's medical home and having unmet needs for therapeutic or supportive services.
RESULTS: Of all children identified as needing services, 16.2% had unmet therapeutic and 9.8% unmet supportive service needs. Only 23.9% of the children who needed therapeutic and 32.5% of children who needed supportive services met the criteria of having a quality medical home. High-quality care within medical homes was associated with a decreased likelihood of having unmet needs for therapeutic and supportive services. Each characteristic of a quality medical home was associated with unmet need, as were severity of the child's condition, family income of <200% of the federal poverty level, underinsurance, and maternal education beyond high school.
CONCLUSIONS: Among other factors, having a poor-quality medical home seems to be a barrier to receiving needed therapeutic or supportive services for children with special health care needs. Efforts on the part of pediatricians to establish quality medical homes for all children could have the added benefit of facilitating access to needed therapeutic and supportive services and promoting the health and well-being of children with special health care needs and their families.