Medical Home Access Among American Indian and Alaska Native Children in 7 States: National Survey of Children’s Health

To describe the prevalence of medical home among American Indian and Alaska Native children (AIAN) compared to non-Hispanic white (NHW) children and identify areas for improvement in the provision of care within a medical home. Prevalence of medical home, defined as family-centered, comprehensive, coordinated, compassionate, culturally effective care, including a personal doctor or nurse and usual care location, was estimated using 2007 National Survey of Children’s Health data. Analyses included 1–17 year-olds in states reporting AIAN race as a distinct category (Alaska, Arizona, Montana, New Mexico, North Dakota, Oklahoma, and South Dakota, n = 9,764). Associations between medical home and demographic (child’s age, household education and income, and state) and health-related [child’s insurance status, special health care need status, and past year Indian Health Service (IHS) utilization] characteristics were assessed among AIAN children. Overall, the prevalence of medical home was 27 % lower among AIAN children (42.6, 95 % CI = 34.4–50.8) than NHW children (58.3, 95 % CI = 56.2–60.4). Child’s age (adjusted OR [aOR] = 2.7, 95 % CI = 1.3–5.6) was significantly associated with medical home. IHS utilization was associated with medical home among AIAN children with private insurance (aOR = 0.2, 95 % CI = 0.1–0.4), but not among uninsured or publicly insured children. Care coordination and family-centered care were noted areas for improvement among AIAN children. Less than half of AIAN children had a medical home. Future studies should further examine the intersection between insurance and IHS to determine if enhanced coordination is needed for this population, which is often served by multiple federally-funded health-related programs.     

Correlates of Overweight and Obesity Among American Indian/Alaska Native and Non-Hispanic White Children and Adolescents: National Survey of Children’s Health, 2007

Risk factors for overweight and obesity may be different for American Indian and Alaska Native (AI/AN) children compared to children of other racial/ethnic backgrounds, as obesity prevalence among AI/AN children remains much higher. Using data from the 2007 National Survey of Children’s Health, behavioral (child’s sport team participation, vigorous physical activity, television viewing, and computer use), household (parental physical activity, frequency of family meals, rules limiting television viewing, and television in the child’s bedroom), neighborhood (neighborhood support, perceived community and school safety, and presence of parks, sidewalks, and recreation centers in the neighborhood), and sociodemographic (child’s age and sex, household structure, and poverty status) correlates of overweight/obesity (body mass index ≥85th percentile for age and sex) were assessed among 10–17 year-old non-Hispanic white (NHW) and AI/AN children residing in Alaska, Arizona, Montana, New Mexico, North Dakota, Oklahoma, and South Dakota (n = 5,372). Prevalence of overweight/obesity was 29.0 % among NHW children and 48.3 % among AI/AN children in this sample. Viewing more than 2 h of television per day (adjusted odds ratio [aOR] = 2.0; 95 % confidence interval [CI] = 1.5–2.8), a lack of neighborhood support (aOR = 1.9; 95 % CI = 1.1–3.5), and demographic characteristics were significantly associated with overweight/obesity in the pooled sample. Lack of sport team participation was significantly associated with overweight/obesity only among AI/AN children (aOR = 2.7; 95 % CI = 1.3–5.2). Culturally sensitive interventions targeting individual predictors, such as sports team participation and television viewing, in conjunction with neighborhood-level factors, may be effective in addressing childhood overweight/obesity among AI/AN children. Longitudinal studies are needed to confirm these findings.     

Unmet Need for Therapy Among Children with Autism Spectrum Disorder: Results from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs

Objectives We examined population-based trends in unmet need for therapy service in children with autism spectrum disorder (ASD) compared to other children with special health care needs (CSHCN), and identified factors associated with unmet need for therapy. Methods A pooled cross-sectional comparison of the 2005–2006 and 2009–2010 waves of the National Survey for Children with Special Health Care Needs (NS-CSHCN) was used. Weighted bivariate analyses were used to compare children ages 3–17 years with ASD (n = 5113) to other CSHCN (n = 71,294) on unmet need for therapy services. Survey weighted multivariate models were used to examine child, family, and contextual characteristics associated with unmet need. Results A greater percentage of children with ASD across both surveys were reported to need therapy than other children with CSHCN. Among children with a reported need, children with ASD were 1.4 times more likely to report an unmet need for therapy compared to other CSHCN (OR 1.42, 95 % CI 1.18–1.71). Variables significantly associated with unmet need for therapy services included not receiving a well-child visit in the past year (OR 5.81, CI 3.83–8.81), surveyed in 2009 (OR 1.42, CI 1.18–1.71), child being female (OR 1.27, CI 1.05–1.53), uninsured (OR 1.72, CI 1.15–2.56), and having greater functional limitation (OR 2.44, CI 1.80–3.34). Conclusions for Practice Children with ASD require supportive services such as occupational, physical, and speech therapy but are less likely to receive such services than other CSHCN. Receiving a well-child visit in the past year was strongly associated with receipt of needed therapy services.     

Family Perceptions of Shared Decision-Making with Health Care Providers: Results of the National Survey of Children with Special Health Care Needs, 2009–2010

The Maternal and Child Health Bureau recently revised its measure of family-provider shared decision-making (SDM) to better align with parents’ views and the intent of SDM. We sought to assess achievements in meeting the revised measure; examine socio-demographic/health correlates; and determine the relationships between SDM and access to quality health care. We analyzed data for 40,242 children with special health care needs (CSHCN) from the 2009–2010 National Survey of CSHCN and assessed the prevalence of SDM and association with other US CSHCN socio-demographic/health characteristics using bivariate and multivariate methods. Logistic regression was used to determine associations between SDM and having a medical home and preventive medical/dental visits. Approximately 70 % of families of CSHCN perceived themselves as shared decision-makers in their child’s care. Families of CSHCN with greater functional limitations had twice the odds of lacking SDM than those never affected. Disparities in attainment rates were noted for families with low versus high income (61 vs. 77 %), less versus more than high school education (59 vs. 73 %), privately insured versus uninsured (76 vs. 57 %), and minority versus white race (63 vs. 74 %). CSHCN with medical homes had 6 times greater odds of perceived SDM and as much as one and a half times the odds of receiving preventive care than CSHCN without a medical home. Major differences in family SDM perceptions are associated with having a medical home, particularly when characterized by family-centered care. Populations of concern are those with more functionally limited children and increased socio-economic challenges.     

Physical Activity,Medical Home,and Health Behavior Counseling Among Adolescents with Special Health Care Needs: NSCH 2016–2017

Maternal and Child Health Journal - Aim 1 was to establish updated prevalence estimates for meeting national physical activity (PA) guidelines among adolescents with and without special healthcare...     

Do Children with Special Health Care Needs with Anxiety have Unmet Health Care Needs? An Analysis of a National Survey

Maternal and Child Health Journal - To describe differences in health care needs between Children with Special Health Care Needs (CSHCN) with and without anxiety and examine the association between...     

The Early Years of Title V: Extending and Improving Care for Children with Special Health Care Needs, 1935–1941

This historical study examines the early years of the federal program of services for children with physical disabilities in the United States (US) during the 1930s, known today as services for Children with Special Health Care Needs (CSHCN). Established as part of the Social Security Act (SSA) of 1935, the Crippled Children Services (CCS) program was one of the first medical programs for children supported by the federal government. Under the SSA, states and territories quickly developed state-level CCS programs during the late 1930s. The US Children’s Bureau administered the program for the federal government and helped states to incorporate preventive services and interdisciplinary approaches to service provision into state-level CCS programs. Factors that influenced the implementation of these programs included the availability of matching state funds, the establishment of state programs for crippled children prior to the SSA, and the accessibility of qualified health care professionals and facilities. The early efforts of this federal program on behalf of children with disabilities can be seen in services for CSHCN today.     

Which Components of Medical Homes Reduce the Time Burden on Families of Children with Special Health Care Needs?

ObjectivesTo examine which components of medical homes affect time families spend arranging/coordinating health care for their children with special health care needs (CSHCNs) and providing health care at home.ConclusionsThree of the five medical home components were associated with lower family time burdens arranging/coordinating and providing health care for children with chronic conditions. If the 55 percent of CSHCNs lacking medical homes had one, the share of families with time burdens arranging care could be reduced by 13 percent.     

Parents’ Experiences in Choosing a Health Plan for Their Children with Special Health Care Needs

To investigate the information sources, and the perceived helpfulness of each source, that parents used when choosing a health plan for their children with special health care needs (CSHCN) and to determine how parents’ perceptions varied by their sociodemographic characteristics and their children’s enrollment status (newly versus previously enrolled). In Florida, a cross sectional study was carried out using 2007 telephone survey data from 500 parents. Sixty-three percent of parents used at least one information source to choose a health plan for their CSHCN. More parents used the Help Line, yet more parents found it to be the least helpful resource. Multivariate analyses suggest that Hispanic parents were 79% more likely and parents of prior enrollees were 1.2 times less likely to use one of the four information sources versus their referent groups. African American parents were 85% more likely and parents residing in Broward County were 55% less likely to indicate that the process was easy versus their referent groups. Hispanic parents were 77% more likely, African American parents were 67% more likely and college graduates were 59% less likely to report that the information they received was adequate versus their referent groups. The results did not highlight one source of information as more useful and helpful. Race and ethnicity seemed to have the most systematic effect on the parents’ experiences in choosing a health plan for their CSHCN, highlighting the need for further research to ensure that information is appropriate across subgroups.     

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

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

Urban American Indian and Alaska Native Youth: Youth Risk Behavior Survey 1997–2003

Objective To examine the prevalence of health risk-behaviors among American Indian/Alaska Native (AI/AN) youth in urban areas. Methods Data from the national Youth Risk Behavior Survey (YRBS) for the years 1997–2003 were used for the analyses (Urban sample = 52,364). The YRBS is a self-report questionnaire administered to a sample of 9th–12th grade students intended to monitor health risk-behaviors. “Urban” is defined as areas within a Metropolitan Statistical Area. Whites are used as the comparison group for the examination of AI/AN estimates. Results Urban AI/AN youth represented 1% of the urban sample (N = 513). The presence of a number of risk-behaviors were at least threefold higher in AI/AN compared to white youth in urban areas, including suicidal behaviors, feeling unsafe at school and needing medical treatment from a fight. Other factors were over twofold higher among AI/AN, including sexual behaviors, illegal drug use, violence at school, and experiences of rape, assault and pregnancy. Conclusions The higher prevalence of health risk-behaviors in urban AI/AN compared to white youth reflects a need for interventions focused on urban AI/AN youth.     

Caregiver Burdens and Preventive Dental Care for Children with Autism Spectrum Disorder,Developmental Disability and/or Mental Health Conditions: National Survey of CSHCN, 2009–2010

Objective The purpose of this study is to examine the burdens of caregivers on perception of the need and receipt of preventive dental care for a subset of children with special health care needs—children with Autism Spectrum disorder, developmental disability and/or mental health conditions (CASD/DD/MHC). Methods The authors used the 2009–2010 National Survey of CSHCN. The survey included questions addressing preventive dental care and caregivers’ financial, employment, and time-related burdens. The associations of these burdens on perceptions and receipt of preventive dental care use were analyzed with bivariate Chi square analyses and multinomial logistic regressions for CASD/DD/MHC (N = 16,323). Results Overall, 16.3 % of CASD/DD/MHC had an unmet preventive dental care need. There were 40.0 % of caregivers who reported financial burden, 20.3 % who reported employment burden, and 10.8 % who reported time burden. A higher percentage of caregivers with financial burden, employment burden, and time-related burden reported that their CASD/DD/MHC did not receive needed preventive dental care (14.1, 16.5, 17.7 % respectively) compared to caregivers without financial, employment, or time burdens (9.0, 9.6 %, 11.0 % respectively). Caregivers with financial burden (adjusted multinomial odds ratio, 1.38 [95 % CI 1.02, 1.86] and employment burden (adjusted multinomial odds ratio, 1.45 [95 % CI 1.02, 2.06] were more likely to report that their child did not receive preventive dental care despite perceived need compared to caregivers without financial or employment burdens. Conclusions for practice Unmet needs for preventive dental care were associated with employment and financial burdens of the caregivers of CASD/DD/MHC.