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Parents report that the process of getting an autism spectrum disorder (ASD) diagnosis is arduous, lengthy, and fraught with difficulties. This analysis of the Pathways survey data set examined the experiences of parents who said, at the time of the survey, that their child currently had ASD compared with parents who said, at the time of the survey, that their child currently had some other developmental disability. Despite substantially earlier parental concerns about their child’s development, the ASD group ( n = 1,420) received their current diagnosis about 7 months later ( M age at diagnosis = 62.8 months, SE = 1.62) on average, than did children in the group diagnosed with other developmental delay ( n = 2,098, M age at diagnosis = 55.4 months, SE = 2.13). Parents in the “Current ASD” group were more likely to report that the health professional said nothing was wrong or that the child might “grow out of it,” emphasizing a common parental complaint. Continued efforts to improve parents’ experience of the diagnostic process are warranted.

Transition to adult services for children and youth with special health care needs (CYSHCN) has emerged as an important event in the life course of individuals with disabilities. Issues that interfere with efficient transition to adult health care include the perspectives of stakeholders, age limits on pediatric service, complexity of health conditions, a lack of experienced healthcare professionals in the adult arena, and health care financing for chronic and complex conditions. The purposes of this study were to develop a definition of successful transition and to identify determinants that were associated with a successful transition. The 2007 Survey of Adult Transition and Health dataset was used to select variables to be considered for defining success and for identifying predictors of success. The results showed that a small percentage of young adults who participated in the 2007 survey had experienced a successful transition from their pediatric care.

Objectives: The study sought to: 1) examine the national Children with Special Health Care Needs (CSHCN) survey to determine whether there are items that can serve to operationalize alternative definitions of underinsurance; 2) construct definitions from the survey items that are consistent with Structural and Economic definitions of underinsurance and devise an algorithm for determining underinsurance for each; and 3) compare these two underinsurance definitions with the Maternal and Child Health definition of inadequate insurance, a definition that takes an Attitudinal approach to the construct. Methods: Analyses included Virginia children who were insured throughout the survey period. Survey items from the national CSHCN survey were examined to identify items related to underinsurance. Items were divided into groups corresponding to three definitions of insurance (Attitudinal, Structural, and Economic). Algorithms were established, and underinsurance rates calculated for each definition. Logistic regression models were constructed to investigate demographic characteristics related to underinsurance. Results: Different percentages of Virginia CSHCN were found to be underinsured based on the definitions of Attitudinal (28.9%), Economic (25.6%), and Structural (2.9%). Eight demographic characteristics and the pervasiveness of the child’s special health care needs were examined in relation to underinsurance. For the Attitudinal definition, poverty level and pervasiveness were significant predictors in the model. In the model predicting Economic underinsurance status, pervasiveness and three of the demographic characteristics significantly predicted underinsurance status. In the multivariate logistic regression model for the Structural definition, none of the predictors was significantly related to underinsurance. Conclusions: These findings demonstrate that alternative definitions of underinsurance yield dramatically different underinsurance rates. Further, even when yielding similar rates, alternative definitions may identify substantially different sets of children. The likelihood of being underinsured has a strong association with low-income status and pervasiveness of the child’s special health care needs. Understanding these factors and their implications will be important when planning accessible and comprehensive health plans and care systems for CSHCN.

This study analyzed Virginia data from the most recent National Survey of Children with Special Health Care Needs. Logistic regression models were run for six Maternal and Child Health Bureau core outcomes and included demographics, child characteristics, health care providers, and health care access variables as predictors. Race/ethnicity disparities were judged to be present if the race/ethnicity variable was a significant predictor in the final model. Examining the components of disparate outcomes, African American children were found to be less likely than their white counterparts to have a usual source for sick and preventive care and to have a personal doctor or nurse. Their parents were less likely to say that doctors spent enough time, listened carefully, were sensitive to values and customs, and made them feel like a partner. These findings emphasize the need to examine health care disparities at a state level in order to guide efforts at remediation.

This article describes the role of pediatric Physical Medicine and Rehabilitation (pediatric PMR) in the Leadership Education in Neurodevelopmental Disabilities (LEND) program. It provides an overview of the LEND program and the field of pediatric rehabilitation, details the scope and resources of the national LEND network, and describes the role of pediatric PMR within the Virginia LEND (Va-LEND) program. Emphasis is placed on the natural fit of pediatric rehabilitation within the LEND program in order to encourage others in the field to become involved in their own state or regional LEND program.

OBJECTIVE. The objective was to examine the relationship between underinsurance and other core outcomes for children with special health care needs. METHODS. This study analyzed data from the National Survey of Children With Special Health Care Needs. Two alternative definitions of underinsurance, designated attitudinal and economic, were investigated. Logistic regression models in which the response variables were the child's status for each of the target core outcomes and underinsurance status was a dichotomous predictor variable were created. In addition to underinsurance status, 10 other predictor variables were included in the model. RESULTS. Underinsurance is associated with the Maternal and Child Health Bureau core outcomes for children with special health care needs related to satisfaction with care and partnering with families in decision-making, access to a medical home, community-based service delivery that is easy to use, and access to services to make transitions to adulthood. In each case, children with special health care needs who were underinsured had significantly poorer outcomes than did children who were adequately insured. CONCLUSIONS. Although these results cannot clarify the cause of poorer outcomes, there are clear negative effects associated with the problem of underinsurance. Inadequate health care coverage for children with special health care needs may save dollars in the short-term but, if other outcomes are compromised, then children, their families, and society at large may pay a price in the longer term.

To the Editor: We appreciate the article published 17 June 2008, “Diversity in Genetic Counseling: Past, Present and Future,” and its illumination of the issue concerning a lack of ethnic and racial diversity in genetic counseling. The lessons learned regarding the experiences of other health professions offer a solid basis for developing similar initiatives in the field of genetic counseling. Experiences within the network of Leadership Education in Neurodevelopmental Disabilities (LEND) Programs offer additional strategies to address diversity. LEND programs are federally funded, advanced level interdisciplinary training programs committed to training leaders in the field of neurodevelopmental and related disabilities. There are currently 38 programs in the U.S. In 2005, the Association of University Centers on Disabilities (AUCD) announced a grant opportunity within the LEND network to increase leadership training in genetic counseling programs, to increase the genetic content in LEND curricula and to develop innovative means to increase the number and diversity of genetic counselors serving children with special health care needs and their families. Three 3-year projects were funded. They included the LEND programs at Albert Einstein College of Medicine, University of Wisconsin, and Virginia Commonwealth University. Funding was provided through the Health Resources and Services Administration’s Maternal and Child Health Bureau.