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While family engagement at the individual level of health care, such as families partnering with providers in decision-making about health care for an individual child has been well studied, family engagement in systems-level activities (e.g., participation in advisory and other decision-making groups, or creation and revision of policies) that impact the health services families and children receive has not. This note from the field presents a framework that describes the information and supports that help families partner with professionals and contribute to systems-level activities. Without attention to these components of family engagement, family presence and participation may be only token. We engaged an expert Family/Professional Workgroup whose members represented key constituencies and diverse geography, race/ethnicity, and areas of expertise; conducted a review of peer-reviewed publications and grey literature; and conducted a series of key informant interviews to identify best practices for supporting meaningful family engagement at the systems level. Based on an analysis of the findings, the authors identified four action-oriented domains of family engagement and key criteria that support and strengthen meaningful family engagement in systems-level initiatives. Child- and family-serving serving organizations can use this Family Engagement in Systems framework to support meaningful family engagement in the design of policies, practices, services, supports, quality improvement projects, research, and other systems-level activities.

Social determinants of health is a concept relevant to parenting in two ways. First, parenting behavior is a social determinant for child health and development; effective parenting is essential for successful emotional, physical and cognitive development. Second, social determinants of health are critical to the development and sustainability of adequate parenting behaviors, which, in term, are a social determinant of child health. Key social determinants related to parenting include economic stability, education, social and community context, neighborhood and built environment, access to health care and parenting interventions, and racism.

This article examines the associations among environmental factors, healthy behaviors, and depression in a sample of adults with major disabilities. When sociodemographics and type and level of disability were controlled, environmental factors (e.g., access to care, contacts with friends, and experience of assault) and risk behaviors (e.g., tobacco use, marijuana use, and physical exercise) were significant correlates of depression. Public health practice and research implications are discussed.

Public health researchers and practitioners have begun to recognize the dynamic nature of disability, promote the health of people with disabilities, and develop strategies to prevent secondary conditions among them. To understand the epidemiology of secondary conditions, the authors developed the Massachusetts Survey of Secondary Conditions, a longitudinal study of adults with major disabilities (n = 656) based on a conceptual framework linking disability, mediating factors, and health outcomes. This paper reports baseline data on the number of secondary conditions experienced by survey respondents. Respondents experienced a mean of 5.3 of 17 secondary conditions. More numerous secondary conditions were associated with fair or poor general health and number of days unable to do routine activities. Factors amenable to public health interventions included difficulty with weight and exercise maintenance, tobacco and marijuana use, and experiencing assault. Disability should be a focus in all public health research, policy, and programs.

Objectives: The purpose of the study was to examine the effect of language proficiency on enrollment in a state-sponsored child health insurance program. Methods: 1055 parents of Medicaid-eligible children, who were enrolled in a state-sponsored child health insurance program, were surveyed about how they learned about the state program, how they enrolled their children in the program, and perceived barriers to Medicaid enrollment. We performed weighted χ2 tests to identify statistically significant differences in outcomes based on language. We conducted multivariate analyses to evaluate the independent effect of language controlling for demographic characteristics. Results: Almost a third of families did not speak English in the home. These families, referred to as limited English proficiency families, were significantly more likely than English-proficient families to learn of the program from medical providers, to receive assistance with enrollment, and to receive this assistance from staff at medical sites as compared to the toll-free telephone information line. They were also more likely to identify barriers to Medicaid enrollment related to “know-how”—that is, knowing about the Medicaid program, if their child was eligible, and how to enroll. Differences based on language proficiency persisted after controlling for marital status, family composition, place of residence, length of enrollment, and employment status for almost all study outcomes. Conclusions: This study demonstrates the significant impact of English language proficiency on enrollment of Medicaid-eligible children in publicly funded health insurance programs. Strong state-level leadership is needed to develop an approach to outreach and enrollment that specifically addresses the needs of those with less English proficiency.

PROLOGUE: Children with chronic illnesses pose special challenges for the managed care plans that treat them. As health plans step up their demands for monitoring patient care, children's needs sho...

Objective. Children with chronic illnesses and disabilities are increasingly enrolling in managed care arrangements. Yet, the rapid expansion of managed care has unknown consequences for children with chronic conditions and disabilities. As managed care is likely to become the predominant mode of medical practice for children with chronic health problems, information gained from a thorough assessment of existing managed care models could be helpful in indicating adjustments and modifications that could result in improved outcomes for this population. The purpose of this article is to outline a new strategy for collecting needed information on the effects of managed care on children with chronic health problems. Methods. We reviewed the literature on the effects of managed care on children with chronic conditions and disabilities. We identified key domains relevant to monitoring and evaluating managed care for this population. Results. Two research approaches can provide helpful information for assessing the effects of managed care on children with chronic conditions. First, a monitoring strategy could be pursued in which enrollment trends in managed care, enrollee perceptions of access and satisfaction with care, and other general indicators of outcomes would be tracked over time using inexpensive and rapid turnaround data sources. Second, an evaluative strategy could be pursued using experimental or quasiexperimental designs, in which outcomes across a variety of domains for children with chronic conditions in managed care are compared with: (a) outcomes for the same children before enrollment in managed care; or (b) outcomes for similar children remaining in traditional fee-for-service settings. Evaluation and monitoring strategies should focus on outcomes in a number of domains including: (1) access to care; (2) utilization of services; (3) quality of care; (4) satisfaction with care; (5) expenditures for care; (6) health outcomes; and (7) family impact. Conclusion. Assessing outcomes that result from enrollment in managed care for children with chronic health problems presents a formidable challenge. The research strategy outlined in this article presents one approach to meeting that challenge. The monitoring and evaluation strategies described here would require commitment of additional resources on the part of government, private foundations, and/or health plans. Given the paucity of existing information and the stakes for children with chronic conditions and their families, investment of added resources in a comprehensive monitoring and evaluation strategy is essential.

According to a substantial literature, passive smoking by children is associated with an increased incidence of lower respiratory illness and diminished pulmonary function. The relationship between passive smoking and childhood asthma, however, is not clear. Data from the Child Health Supplement to the 1981 National Health Interview Survey were analyzed with information about 4331 children aged 0 to 5 years to study the relationship between maternal smoking and (1) the prevalence of childhood asthma, (1) the likelihood of taking asthma medication, (3) the age of onset of children's asthma, and (4) the number of hospitalizations among children with and without asthma. An odds ratio for asthma of 2.1 was shown by multivariate logistic regressions among children whose mothers smoke 0.5 packs of cigarettes or more per day compared with children of nonsmokers (P = .001). In similar analyses maternal smoking of 0.5 packs per day was identified as an independent risk for children's use of asthma medications (odds ratio 4.6, P = .0006) and for asthma developing in the first year of life (odds ratio 2.6, P = .0006). Maternal smoking is also associated with increased numbers of hospitalizations by its association with an increased risk of asthma as well as by contributing to hospitalizations independently of a child having asthma. Among children with asthma, however, maternal smoking is not associated with increased numbers of hospitalizations. It was concluded that maternal smoking is associated with higher rates of asthma, an increased likelihood of using asthma medications, and an earlier onset of the disease. These findings have implications for renewed efforts to discourage smoking in families, especially during pregnancy and the first 5 years of children's lives.

Current research suggests that people with disabilities are more likely to use tobacco, less likely to quit, and less likely to be screened for tobacco use. However, little is known about the impact of changes in smoking status on the health-related quality of life (HRQL) of people with disabilities.The primary objective of this paper is to examine the association between changes in HRQL and smoking status over time among people with disabilities.The study data were derived from the Massachusetts Survey of Secondary Conditions, a longitudinal survey of adults with disabilities; Phase I was conducted in 1996-1998, Phase II in 1998-1999, and Phase III in 1999-2000. The main outcome measure was HRQL as measured by the Medical Outcomes Study Short Form-36 (SF-36). Analysis was primarily done in 2003.Current smokers and those who began smoking during follow-up had significantly poorer HRQL compared with nonsmokers with disabilities. Longitudinal analysis suggests that controlling for age, gender, race/ethnicity, education, and activities of daily living, changes in HRQL scores over time were associated with changes in smoking status. Compared to smokers, those who quit smoking during follow-up experienced a significant improvement in mean SF-36 scores over time for the dimensions of mental health, energy and vitality, and general health.Findings from this study highlight a strong need to inform public health programs, people with disabilities and healthcare providers about the association between tobacco cessation and improved health-related quality of life among people with disabilities.

The purpose of the study was to examine the effect of language proficiency on enrollment in a state-sponsored child health insurance program.1055 parents of Medicaid-eligible children, who were enrolled in a state-sponsored child health insurance program, were surveyed about how they learned about the state program, how they enrolled their children in the program, and perceived barriers to Medicaid enrollment. We performed weighted chi2 tests to identify statistically significant differences in outcomes based on language. We conducted multivariate analyses to evaluate the independent effect of language controlling for demographic characteristics.Almost a third of families did not speak English in the home. These families, referred to as limited English proficiency families, were significantly more likely than English-proficient families to learn of the program from medical providers, to receive assistance with enrollment, and to receive this assistance from staff at medical sites as compared to the toll-free telephone information line. They were also more likely to identify barriers to Medicaid enrollment related to "know-how"--that is, knowing about the Medicaid program, if their child was eligible, and how to enroll. Differences based on language proficiency persisted after controlling for marital status, family composition, place of residence, length of enrollment, and employment status for almost all study outcomes.This study demonstrates the significant impact of English language proficiency on enrollment of Medicaid-eligible children in publicly funded health insurance programs. Strong state-level leadership is needed to develop an approach to outreach and enrollment that specifically addresses the needs of those with less English proficiency.

Four groups of investigators in the Research Consortium on Chronic Illness in Childhood have used the Personal Adjustment and Role Skills Scale (PARS) III to assess the psychosocial adjustment of children with chronic physical illnesses and no mental impairment. The PARS III consists of 28 items that measure psychosocial functioning in six areas: peer relations, dependency, hostility, productivity, anxiety-depression, and withdrawal. Analyses of the measure's reliability and validity, using a total combined sample of 450 school-age children (ages 5-18 years) with a variety of chronic illnesses and three comparison samples of healthy children, provide evidence that the PARS III can be used successfully to assess psychosocial adjustment of children with chronic illnesses and no cognitive impairments.

Previous studies of the effects of television viewing on mental abilities have shown mixed results, but most suffered from one or more of the following shortcomings: a small or other- wise unrepresentative sample, a cross-sectional rather than longi- tudinal approach, and a failure to consider intervening variables between television viewing and cognitive skills. This study was designed to overcome these deficiencies by using nationally rep- resentative data from the National Health Examination Cycle 2 and Cycle 3 Surveys. These surveys included 1,745 children who

Chronically ill children are currently being served in every state in a number of early childhood education programs, including special education programs, Head Start, early intervention programs, and a variety of other center-based day care and preschool education programs. Although there are some mandates for serving some chronically ill young children in early education programs—the Education for All Handicapped Children Act (P.L. 94–142) and Head Start—only a small percentage of all chronically ill children under 6 years of age are currently enrolled in these programs. Care of chronically ill children in educational settings often entails the delivery of a variety of related services, for example, transportation; education-based health services; speech, physical, and occupational therapies; child and family counseling; and building and schedule modifications. Who should provide and pay for these related services is the focus of heated policy debates at local, state, and federal levels of government.

Attention to the specific educational needs of chronically ill children is a relatively recent development in American education, beginning in a limited fashion at the turn of the century. Prior to that time, high mortality rates, societal attitudes towards the chronically ill or delicate child, and the view of public schooling as a privilege rather than a right, kept all but the mildly impaired out of the public system. Reversals in these trendsadvances in medical science that have improved survival rates for some conditions, increasing public acceptance of people who are different and disabled, and legislation establishing education as an entitlement for all children-have allowed for the entrance of many chronically ill children into mainstream education.

Using independent information collected from the parents and teachers of a stratified random sample of 829 special education students, we compared the classification practices of five major metropolitan school districts. We examined the functional levels of students with the same labels living in different districts and tested whether differences in functional status were associated with the prevalence of the classification. To determine whether special education designations might change if the students lived elsewhere, we reclassified the students in each district’s sample using discriminant functions estimated within each of the other districts (which empirically replicated that district’s classification scheme). We found that (a) functional levels of students classified as mentally retarded, physically/multiply handicapped and hearing impaired differed across districts; (b) districts that classified more students as mentally retarded were serving less severely impaired students under this label; and (c) districts were least consistent in their use of the mentally retarded and emotionally disturbed designations and most consistent in their use of the hearing impaired and, to a lesser extent, physically/multiply handicapped designations; districts’ use of the speech impaired and learning disabled designations fell between these two extremes.

The number of days absent from school during the 1979-80 school year for 573 children aged 6-17 years in Berkshire County, Massachusetts was ascertained by parent reporting in a random household survey. Children with a wide range of chronic health impairments were reported as missing more school than their healthy peers (8.7 days vs. 5.8, p < .001). Although there was a trend for children reported as having functional impairments to miss more school than those with chronic conditions without functional impairments (11.0 vs. 8.1), the difference was not statistically significant. Children with a variety of reported psychosocial difficulties missed more school than those without psychosocial difficulties for the sample as a whole and for those with reported chronic conditions. These findings document support for the assumption that children with a wide range of physical and psychological problems miss more school than their healthy peers and illustrate that the etiology of school absences is multifactoral and reflects behavioral as well as purely physical phenomena.

A 2-year follow-up study assessed the stability of special education students' mobility, status, and classification labels. A total of 1,184 students were selected in fall 1982 from the elementary special education programs of three cities. Two years later, 92% remained in their school district. Of these, 71% stayed in special education with the same classification, 12% remained with a different classification, and 17% were no longer receiving special education services. The child's original primary classification was the strongest predictor of reclassification and termination. Family background contributed most to mobility. Implications for practice and research are discussed.

A comprehensive birth-to-kindergarten program was evaluated by classroom observa tions and teacher ratings of 132 participant children and 366 comparison children during fall and spring of the kindergarten year. The observations revealed significant advantages for the participants in both fall and spring on a majority of indices, particularly for behaviors categorized as social and use of time. The teacher ratings indicated few overall differences, with advantages for participants only in the fall on a prereading scale. A logistic regression model was used to adjust for possible effects of children's background characteristics; advantages for participants over comparison children were consistent across background characteristics. On the teacher ratings, the adjustments revealed significant interactions: advantages of participants over comparison children were found for subgroups traditionally associated with having difficulties in kindergarten.

The authors present a program of service and research with preschool children that has been shown effective in providing positive preventive outcomes.

Concern is growing about the adequacy and safety of health services provided for medically complex children in public schools. A national survey of state health and education agencies was conducted to learn if guidelines existed governing the practice of eight selected nursing procedures in schools. Thirteen states (26%) had no written guidelines, 13 states (26%) had guidelines only for medication administration, and only six states (12%) had guidelines for the eight selected nursing procedures.

In November 1975, Congress passed The Education for All Handicapped Children Act (public law 94-142) which became effective on October 1, 1977. This law requires that any state receiving funds through PL 94-142 provide a "free appropriate public education" for each resident handicapped child, and protect the procedural rights of parents and children in the receipt of these special education services. State and local educational agencies (school systems) must develop and implement plans to identify, locate, and evaluate these children, and place them into suitable programs, all toward the goal of "full educational opportunity" for each (sections 612 and 613).1

The judicial precedents and legislative mandates passed during the past two decades to ensure full appropriate public education for all children have resulted in a movement toward mainstreaming children with a wide range of physical and developmental disabilities into regular education classroom settings. Although some child development and pediatric literature has addressed the effects of these initiatives on the children with handicaps, less attention has been paid to the effect that mainstreaming has on their nondisabled peers in the classroom. As knowledgeable community advocates, pediatricians should be informed about the specifics of the mainstreaming movement. This paper outlines the movement's historical underpinnings, discusses current definitions of "mainstreaming", and briefly reviews the literature on the effects of this policy on classrooms, teachers, and students with and without disabilities. The impact of mainstreaming children with handicaps in regular classroom settings is equivocal, with many studies lacking methodological sophistication to yield reliable and valid data. Results of the few well-designed studies do show, however, that academic and social outcomes for both the handicapped child and for his/her nondisabled peers are consistently better in mainstreamed classrooms where adequate resources have been made available to the child and teacher than in more segregated settings. Furthermore, the literature consistently points out the key role both regular and special education teachers play in successful mainstreamed classrooms. Pediatricians can help families with children with disabilities negotiate the educational system in order to achieve the appropriate classroom placement.

To study the emergence of attention deficits in early childhood, the diagnostic team of an early education program documented the occurrence of poor concentration, distractibility, behavioral disorganization, poor self-monitoring, and overactivity in a group of 174 children followed prospect