Impact of employee benefits on families with children with autism spectrum disorders.

The objectives of this study are to evaluate the employee benefits parents of children with autism spectrum disorders have, how benefits are used, work change, and job satisfaction. We conducted a cross-sectional mailed survey study of 435 families with children with autism spectrum disorders residing in the United States. We received 161 surveys for a response rate of 37%. Families reported using the following benefits: 39% paid family leave, 19% unpaid family leave, 91% flexible work arrangements, and 86% telecommuting. Of respondents, 43% reported stopping work, cutting down on hours worked, or changing jobs because of their child's condition. Having paid family leave was a positive predictor for job satisfaction. Parents of children with autism spectrum disorders have an interest and need for alternative work arrangements.

The medical home: relationships with family functioning for children with and without special health care needs.

OBJECTIVE: In this study we tested the association of the medical home with family functioning for children without and with special health care needs (CSHCN). METHODS: We used data from the 2007 National Survey of Children's Health to run multivariate logistic regressions to test the association between having a medical home and family functioning (difficulty with parental coping, parental aggravation, childcare/work issues, and missed school days). We further assessed interactions of CSHCN status with having a medical home. RESULTS: In adjusted analysis, parents of children with a medical home were less likely to report difficulty with parental coping (odds ratio [OR] 0.26 [0.19-0.36]), parental aggravation (OR 0.54 [0.45-0.65]), childcare/work issues (OR 0.72 [0.61-0.84]), and missed school days (OR 0.87[0.78-0.97]) for their children than those without a medical home. Using interaction terms, we found that for most outcomes, the medical home had a greater association for CSHCN compared with healthy peers, with odds ratios ranging 0.40 (CI 0.22-0.56) for parental aggravation to 0.67 (CI0.52-0.86) for missed school days. CONCLUSIONS: We show that the medical home is associated with better family functioning. All children may benefit from receiving care in a medical home, but CSHCN, who have greater needs, may particularly benefit from this enhanced model of care.

The well-being of parental caregivers of children with activity limitations.

This paper describes well-being (health status/quality of life, healthcare utilization, employment, and financial status) of parental caregivers of children with activity limitations and compares their well-being to parental caregivers with children without activity limitations. Using Medical Expenditure Panel Survey data from 1996 to 2001, we examined the well-being of parents of children with and without an activity limitation. Children were considered as having an activity limitation if they reported a limitation in school, play or social activities. Analyses include weighted descriptive statistics and multivariable regressions. Seventy-five percentage of parents of children with activity limitations experienced at least one adverse outcome compared to 66% of parents of children without activity limitations. Parents of children with activity limitations exhibited poorer reported quality of life as indicated by lower SF-12 physical health scores (coefficient = -2.24 CI -3.38 to -1.11) and lower EuroQol scores (coefficient = -.07 CI -.10 to -.03). Parents of children with activity limitations have slightly higher utilization of sick visits. One measure of preventive care use was not significant and one showed a slight increase in use among parents of children with activity limitations. Employment and financial outcomes were less favorable for parents of children with activity limitations. Across a variety of domains, parental caregivers of children with activity limitations are at a disadvantage compared to other parents suggesting that public and private parental supports might be helpful.

Understanding factors associated with work loss for families caring for CSHCN.

OBJECTIVE: Parents of children with special health care needs (CSHCN) are at risk for work loss as a result of the complex health needs of their children. Our objective was to determine how child- and family-level factors and the medical home are associated with work loss for these families. METHODS: We performed secondary data analyses of the National Survey of Children With Special Health Care Needs (NS-CSHCN) 2005-2006. This is a nationally representative sample of CSHCN in the United States. The primary outcome measure was having any family member report work loss to care for a CSHCN. We calculated survey-weighted unadjusted and adjusted odds ratios by using independent variables that included child demographic factors, functional limitation, condition stability, insurance status/type, family income, and criteria of the medical home. RESULTS: Overall, 23.7% of the parents of CSHCN reported work loss as a result of their child's health care needs. Greater functional limitation and condition instability were associated with increased odds of family work loss. The presence of a medical home in the multivariate model was associated with a 50% reduction in the odds of reported family work loss. CONCLUSIONS: Approximately 24% of families with CSHCN have experienced work loss to meet the medical needs of their child. Availability of a system of care support, such as the medical home, is associated with lower work loss reported by families. Therefore, improved systems of care for CSHCN may have the potential to optimize work productivity for families.

State policy environment and delayed or forgone care among children with special health care needs.

OBJECTIVE: To evaluate if children with special health care needs (CSHCN) residing in states with more generous public insurance programs were less likely to report delayed or forgone care. METHODS: We used multilevel modeling to evaluate state policy characteristics after controlling for individual characteristics. We used the 2001 National Survey of CSHCN for individual-level data (N=33,317) merged with state-level data, which included measures of the state's public insurance programs (Medicaid eligibility and enrollment, spending on Medicaid, SCHIP and Title V, and income eligibility levels), state poverty level and provider supply (including pediatric primary care and specialty providers). We also included a variable for state waivers for CSHCN requiring institutional level care. RESULTS: Delayed or forgone care significantly varied among CSHCN between states, net of individual characteristics. Of all the state characteristics studied, only the Medicaid income eligibility levels influenced the risk of experiencing delayed care. CSHCN living in states with higher income eligibility thresholds or more generous eligibility levels were less likely to experience delayed care (OR 0.89(0.80,0.99); P

Parental perspectives on influenza vaccination among children with asthma.

OBJECTIVES: The objectives of this study were to: (1) identify modifiable factors influencing receipt of influenza vaccination among children with asthma, and (2) to evaluate the effect of heightened media attention on vaccination rates. METHODS: During November and December 2003, we interviewed parents of children with asthma about their experiences with and beliefs about influenza vaccination. We randomly selected 500 children from a study population of 2,140 children identified with asthma in a managed care organization in Massachusetts. We obtained data on influenza vaccination status from computerized medical records and determined significant factors influencing receipt of influenza vaccination. RESULTS: Children were more likely to be vaccinated if their parent recalled a physician recommendation (odds ratio [OR] 2.6; 95% confidence interval [CI] 1.5, 4.5), believed the vaccine worked well (OR 2.0; 95% CI 1.4, 2.8), or expressed little worry about vaccine adverse effects (OR 1.3; 95% CI 1.0, 1.6), or if the child was younger (OR 1.1 per year of age; 95% CI 1.0, 1.2). During the study period, there was heightened media attention about influenza illness and the vaccine. The influenza vaccination rate for children with asthma was 43% in 2003-04 compared with 27% in 2002-03. Comparison of weekly influenza vaccination rates in 2003-04 and 2002-03 suggested that the media attention was associated with the increase in vaccination rates. CONCLUSIONS: Physician recommendations and parental education about influenza vaccine availability, effectiveness, and adverse effects are potentially important influences on influenza vaccination. Our findings suggest that media coverage of the risks of influenza was associated with a significant increase in vaccination rates.

Influenza vaccination among children with asthma in medicaid managed care.

OBJECTIVE: To describe influenza vaccination rates and identify risk factors for missing vaccination among children with asthma in managed Medicaid. METHODS: As part of a longitudinal study of asthma care quality, parents of children aged 2-16 years with asthma enrolled in Medicaid managed care organizations in Massachusetts, Washington, and California were surveyed by telephone at baseline and 1 year. We evaluated influenza vaccination rates during the follow-up year. RESULTS: The study population included 1058 children with asthma. The influenza vaccination rate was 16% among all children with asthma and 21% among those with persistent asthma. Children with persistent asthma (odds ratio [OR] 0.53, 95% confidence interval [CI] 0.36-0.79) and those who had been hospitalized during the follow-up year (OR 0.29, 95% CI 0.11-0.76) were less likely to miss vaccination. Children older than 9 years (OR 1.66, 95% CI 1.13-2.46) and children of parents with less than a high school education (OR 2.29, 95% CI 1.05-5.03), compared with a college degree, were at risk for missing vaccination. Among children with persistent asthma, older children (OR 1.65, 95% CI 1.01-2.69) and children of parents with less than a high school education (OR 4.13, 95% CI 1.43-11.90) were more likely to miss influenza vaccination. CONCLUSIONS: Our findings suggest that interventions directed toward older children and families with lower educational levels may help improve influenza vaccination rates among this high-risk group. The low overall vaccination rate highlights the need for improvement in this important component of asthma care quality for all children with asthma.