Beverly A. Mulvihill

Prevalence and functioning of children with cerebral palsy in four areas of the United States in 2006: a report from the Autism and Developmental Disabilities Monitoring Network.

AIM To estimate the prevalence of cerebral palsy (CP) and the frequency of co-occurring developmental disabilities (DDs), gross motor function (GMF), and walking ability using the largest surveillance DD database in the US. METHODS We conducted population-based surveillance of 8-year-old children in 2006 (N=142,338), in areas of Alabama, Georgia, Wisconsin, and Missouri. This multi-site collaboration involved retrospective record review at multiple sources. We reported CP subtype, co-occurring DDs, Gross Motor Function Classification System (GMFCS) level, and walking ability as well as CP period prevalence by race/ethnicity and sex. RESULTS CP prevalence was 3.3 (95% confidence interval [CI]: 3.1-3.7) per 1000 and varied by site, ranging from 2.9 (Wisconsin) to 3.8 (Georgia) per 1000, 8-year olds (p<0.02). Approximately 81% had spastic CP. Among children with CP, 8% had an autism spectrum disorder and 35% had epilepsy. Using the GMFCS, 38.1% functioned at the highest level (I), with 17.1% at the lowest level (V). Fifty-six percent were able to walk independently and 33% had limited or no walking ability. INTERPRETATION Surveillance data are enhanced when factors such as functioning and co-occurring conditions known to affect clinical service needs, quality of life, and health care are also considered.

Association of early childbearing and low cognitive ability.

CONTEXT Teenage pregnancy remains a pressing social issue and public health problem in the United States. Low cognitive ability is seldom studied as a risk factor for adolescent childbearing. METHODS Data from the National Longitudinal Survey of Youth were used in a matched-pairs nested case-control study comparing women who had a first birth before age 18 with those who did not. Significant differences in Armed Forces Qualifications Test scores and in reproductive and social intervening variables were determined using chi-square analyses and t-tests. Multiple logistic regression models determined the independent effects of specific factors on early childbearing. RESULTS Women who had their first birth before age 18 had significantly lower cognitive scores than others; women with a second birth before age 20 had significantly lower scores than those with one teenage birth. On average, women with the lowest cognitive scores initiated sexual activity 1.4 years earlier than those with the highest cognitive scores. Among those who had had a sexuality education course, a smaller proportion of women had scores in the first quartile for the overall sample than in the fourth quartile (20% vs. 28%); an even greater difference was seen among women who correctly answered a question about pregnancy risk (14% vs. 43%). Both poverty and low cognitive ability increased the odds of early childbearing. CONCLUSIONS Young women with low cognitive ability are at increased risk for early initiation of sexual activity and early pregnancy. Further research is needed to design interventions that consider this populations specific information and support needs.

Training, experience, and child care providers’ perceptions of inclusion

Abstract Teachers’ perceptions, attitudes, and beliefs have been shown to affect their behavior. This study investigated center- and home-based child care providers’ perceptions of inclusion-related needs and barriers and (a) the providers’ participation in disability-related training, and (b) their current experience working with children with disabilities. A mailed survey was used to gather demographic data, information on training and experience, and to rate a list of needs and concerns. Younger and African American caregivers working in center-based programs were more likely to attend training and serve children with disabilities. Participating in training and serving children with disabilities was positively associated with caregivers’ perceptions of needs and barriers, but not with child care providers’ attitudes. Results indicate that program and provider characteristics are related to participation in disability-related training and serving children with disabilities that, in turn, are related to perceptions of needs and barriers. Further investigation of the mechanisms associated with training and its influence on attitudes, beliefs and practice of parents and special education teachers, as well as child care providers is indicated.

Does Access to a Medical Home Differ According to Child and Family Characteristics, Including Special-Health-Care-Needs Status, Among Children in Alabama?

OBJECTIVE. Our goal was to examine relationships among access to a medical home, special-health-care-needs status, and child and family characteristics in one Southern state. We hypothesized that access to a medical home is influenced by several family and child sociodemographic characteristics, including special-health-care status. METHODS. We used data from the 2003 National Survey of Childrens Health. The study sample comprised all Alabama resident children. The main dependent variable was a medical home; the primary independent variable classified children according to children-with-special-health-care-needs status. We controlled for child age, gender, race, family structure, health status, insurance coverage, household education, and poverty. We first explored means or proportions for the study variables and then estimated multivariate logistic regression models. RESULTS. Children with special health care needs were significantly more likely than children without special health care needs to have a personal doctor or nurse, to have a preventive health care visit in the previous 12 months, and to have good communication with their provider. Children with special health care needs were also more likely to experience problems accessing specialty care, equipment, or services. Being uninsured, living at or near the federal poverty level, in a household where no one completed high school, being black, having less than excellent or good health, and living in a nontraditional family structure were characteristics associated with being less likely to have a medical home. In general, children-with-special-health-care-needs status was not related to having a medical home, but dependency on prescription medicine was. CONCLUSIONS. Assuring that all children, irrespective of family income, have access to and are enrolled in health insurance plans will move us closer to the national goal of having a medical home for all children, especially those with a special health care need, by 2010.

The Association of Child Condition Severity with Family Functioning and Relationship with Health Care Providers Among Children and Youth with Special Health Care Needs in Alabama

Objective: The purpose of the present study is to assess how the severity of a child’s condition affects family functioning and the relationship with health care providers among children with special health care needs in Alabama. Methods: Using the data from the National Survey of Children with Special Health Care Needs (CSHCN), three variables were used as measures of condition severity: responses to the CSHCN screener questions, whether condition affected the ability to do things for children and youth with special health care needs (CYSHCN), and the level of severity of CYSHCN’s condition. The dependent variables included family functioning and provider relationship. Results: CYSHCN who only take prescription medicine for their chronic condition (MO) had lower condition severity from those who have other needs (NMO). In NMO CYSHCN, higher condition severity was associated with increased strain on family functioning outcomes and higher unmet needs in provider relationship outcomes, adjusted for demographic and insurance variables. Families of NMO CYSHCN with a more severe condition spent more temporal and financial resources and had a higher need for professional care coordination, and were less likely to have sensitive providers. Conclusions: Severity of condition is an important factor increasing strain on family resources and relationship with the provider. Our results indicate the need for professional care coordination and family support, particularly among those families in which there is a NMO CYSHCN with a more severe condition. This finding supports the mandate that all CYSHCN should have their health care coordinated and provided in the context of a medical home.

Reasons for Child Care Choice and Appraisal Among Low-Income Mothers

This article examines what low-income mothers report as important in selecting child care. Reasons for choosing child care were measured using open-ended questions and a checklist in a sample of 1,001 mothers receiving child care subsidies. Structural characteristics of care, child safety, and caregiver characteristics were found to be the most frequently cited reasons for the selection of a child care provider. Nearly all mothers reported being highly satisfied with their current child care. The lack of a working knowledge of child care quality is proposed as an obstacle to children being placed in high quality child care settings.

Best practices for inclusive child and adolescent out-of-school care: a review of the literature.

Inclusion or full participation by children with disabilities in programs and activities designed for typically developing children benefits children with and without disabilities and their families. Inclusive care programs are least available for school-age children and adolescents. A review of the literature identified best practices for effective inclusive out-of-school care, including: a written program philosophy; a written plan for inclusive programs; strong leadership; a disability awareness program for staff and children; training and support for staff; sufficient staff to meet program needs; a working communication and collaboration; an adapted setting, activities, and time parameters; proficient collaboration with families; and an evaluation plan.

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.

Future plans and social/recreational activities of youth with special health care needs: The implications of parental help in completing surveys

BACKGROUND A major focus of the literature on youth with special health care needs (YSHCN) is the transition to adult health care. As perceptions of disability are a product of interactions between youth and their environment, it is important to understand youths needs and experiences beyond health care. Few studies have addressed social/recreational activity participation and future plans and none have included parent/caregiver help in survey completion as a potential factor impacting responses. OBJECTIVES We describe activity participation and identification of future plans among YSHCN and examine the impact of receiving parent/caregiver assistance to complete a survey on these responses. Implications for research, policy, and practice affecting programs serving and providing transition assistance for YSHCN are discussed. METHODS Data are from a survey of YSHCN conducted during Alabamas 2010 Title V Maternal and Child Health Needs Assessment. Analyses included descriptive statistics, bivariate analysis, and multivariable logistic regression. RESULTS Youth who received help completing the survey were less likely to report participating in certain social/recreational activities and key future plans, including hobbies, getting married, having children, and working for pay. CONCLUSIONS For YSHCN, parent/caregiver assistance to complete a survey is a critical consideration in analyses and interpretation of results. Whether, how much, and what type of help received may represent a more objective proxy measure of perceptions of condition severity or impact on abilities than do self-reported ratings of these factors. Our results also raise questions about the distinctions between youth and parent/caregiver perceptions of independence, participation, and potential.

Contribution of health care coverage in cervical cancer screening follow-up: findings from a cross-sectional study in Colombia.

Objective: To determine the role of health care coverage (HCC) in follow-up of cervical cancer screening (seeking Papanicolaou test results and follow-up when abnormal results were found) among Colombian women. Methods: A population-based cross-sectional study of 24,717 women, using the 2005 Colombian Demographic and Health Survey, was conducted. Results: Nearly 4% of women screened did not seek their results. For approximately 17% of the women, there was no follow-up when abnormal results were found. Women in the contributory regime (private insurance) and those in the subsidized regime (public insurance) were more likely to seek Papanicolaou test results than women without HCC, even after adjusting for sociodemographic factors (adjusted odds ratio [ORa], 1.96; 95% confidence interval [CI], 1.60-2.41 and ORa, 1.34; 95% CI, 1.14-1.58, respectively). For follow-up when abnormal results were found, there was no difference between the subsidized regime and no HCC, but women in the contributory regime were more likely to follow-up than women without HCC (ORa, 1.40; 95% CI, 1.05-1.86). Conclusions: Seeking Papanicolaou test results is relatively high among Colombian women; however, there are differences according to HCC. Follow-up when abnormal Papanicolaou test results were found was positively associated only with private insurance; follow-up is the same for women without insurance and with public insurance. Exploring strategies to promote follow-up among women and to improve cervical cancer follow-up services for those enrolled in the subsidized regime may increase follow-up rates among Colombian women.