Use Of Special Education Services Research Articles

Patterns of Social Determinants of Health and Publicly-Funded Service Access among Children Involved in Educational, Child Welfare, and Social Service Systems.

Social determinants of health (SDOH)-conditions in which children live, learn, and play-affect child health and well-being. Publicly funded services in education and child welfare systems are important resources to support child well-being, but cross-system coordination is rare. Leveraging integrated administrative data from 60,287 6th graders enrolled in public schools in Minnesota, we used latent class analysis (LCA) to examine patterns of cross-system SDOH, including educational services and involvement in child welfare. Five classes emerged. The largest class was characterized by a few multi-system SDOH and had low service needs. Two classes had differing patterns of school service use, one with a greater likelihood of special education service use alone and the other characterized by the use of multiple school services. Two classes were characterized by cross-system SDOH/service use (e.g., homelessness, child protection, placement in care, mental health, and special education services). We then assessed whether race/ethnicity predicted class membership and tested educational distal outcomes. American Indian, Black, and Latinx children had higher odds of exposure to both cross-system SDOH classes. Students facing any SDOH, particularly those with greater multi-system SDOH exposure, had worse attendance and academic achievement. Our study indicates that children are navigating complex experiences of SDOH and service needs, with a disproportional likelihood that Black children, Indigenous children, and other children of color (BIPOC) experience SDOH. Identifying patterns of SDOH provides an opportunity for policymakers and practitioners to intervene to promote health equity. By understanding facilitators and barriers to child well-being, the results inform how child-serving systems can strive toward health equity.

Psychological, educational, and social late effects in adolescent survivors of Wilms tumor: A report from the Childhood Cancer Survivor Study.

To delineate the impact of treatment exposures and chronic health conditions on psychological, educational, and social outcomes in adolescent survivors of Wilms tumor. Parent reports from the Childhood Cancer Survivor Study were analyzed for 666 adolescent survivors of Wilms tumor and 698 adolescent siblings. Adjusting for race and household income, survivors were compared to siblings on the Behavior Problems Index and educational outcomes. Multivariable modified Poisson regression estimated relative risks (RR) for therapeutic exposures and chronic health conditions (CTCAE 4.03 graded) among survivors, adjusting for sex, race, income, and age at diagnosis. Compared to siblings, adolescent survivors of Wilms tumor were more likely to take psychoactive medication (9.4% vs. 5.1%, p < 0.001) and utilize special education services (25.5% vs. 12.6%, p < 0.001) but did not differ significantly in emotional and behavioral problems. Survivors were less likely to be friendless (7.2% vs. 10.1%, p = 0.04) but were more likely to have difficulty getting along with friends (14.5% vs. 7.8%, p < 0.001). Among survivors, use of special education services was associated with abdomen plus chest radiation (RR = 1.98, CI:1.18-3.34). Those with grade 2-4 cardiovascular conditions had higher risk for anxiety/depression (RR = 1.95, CI:1.19-3.19), headstrong behaviors (RR = 1.91, CI:1.26-2.89), and inattention (RR = 1.56, CI:1.02-2.40). Adolescent survivors of Wilms tumor were similar to siblings with respect to mental health concerns overall but were more likely to require special education. Monitoring of psychosocial and academic problems through adolescence is warranted, especially among those treated with radiation to the abdomen plus chest or with cardiac conditions.

Academic Challenges and Concerns for Children with Sickle Cell Disease: Analysis of a Hospital-Based School Intervention Program

Introduction: Neurocognitive deficits are a well-known complication in patients with sickle cell disease (SCD) and are often associated with overt stroke and silent infarctions. However, cognitive deficits may be seen in patients even without apparent MRI findings as compared to non-affected controls. Studies have also shown the impact of socioeconomic status and parental education on school retention and cognition in patients with SCD. More specifically, rates of retention and special education service use through either an Individualized Education Plan (IEP, providing specialized education services) or 504 Plan (providing accommodations due to physical disability/medical diagnosis) are reported as high as 40%. However, these historical data have been limited to primarily adolescent patients. Thus, a more thorough analysis is needed to better determine the prevalence and types of academic challenges among children with sickle cell disease, particularly younger ages. Methods: The Cincinnati Children's Hospital Medical Center's Comprehensive Sickle Cell Clinic includes a school intervention program. This program includes 1-2 full time school teachers who engage directly with patients, parents, and school staff to ensure the provision of adequate school-based services and to address specific challenges or concerns. Children with SCD are referred to the school interventionist by the clinical team (including both medical and psychosocial providers) for any school-related concern. The interventionist completes the Brief School Needs Inventory (BSNI), a thirty-item tool that determines a patient's educational risk based on academic and psychosocial history and parental responses. The BSNI provides a numeric score from 0-20 and a categorical risk of 1 (low risk) to 3 (high risk). In this retrospective review, the BSNI for all patients with SCD completed during the 2018-2019 school year were reviewed. The prevalence of the receipt of special education services (SES), grade retention, neuropsychological testing, and number of school absences were captured. Basic demographic and disease-related data, including zip code, patients' disease history, use of disease-modifying therapy, and any notable brain MRI findings were also recorded. Median household income was extrapolated from the zip codes based on 2017 US Census Bureau reporting (the most recently published year). Results: A total of 78 patients (58 HbSS, 17 HbSC, 3 HbS/β+-thalassemia) completed the BSNI for the 2018-19 academic year; an additional 15 children were also referred but did not complete the evaluation. Nearly all (95%) of patients with HbSS were receiving disease-modifying therapy (hydroxyurea or transfusions); 41% of patients with MRIs showed abnormal findings. Median age was 9 years (range 14 months - 19 years, preschool - post-secondary education). Nineteen percent of patients lived in a zip code with a median household income below the federal poverty level ($25,750). The mean BSNI score was 7.6±5.5; 27 patients were deemed low risk, 32 moderate risk, and 19 high academic risk by the BSNI (Table 1). A majority (50%) of parents responded with concerns both with obtaining support/accommodations for their child and explaining their child's medical needs to the school. Of 59 recorded, 24% of patients had had at least 16 absences in the prior year. Despite the diagnosis of SCD for all patients, only 21% had established 504 medical plans. Academic concerns were common with 20% of referred children reporting an IEP, 14% of patients with a history of grade retention, and an additional 10% with concerns for possible retention. Conclusion: The prevalence of academic difficulties and challenges is high amongst patients with SCD even in the elementary to middle school years, with rates of grade retention ~20% as compared to the national average of &lt;2-6%. Parents of children with SCD report their greatest concerns as obtaining accommodations for their child and explaining their child's medical needs to school personnel. Most parents and schools are inadequately prepared or resourced to identify and address academic and medical needs in the school-based setting, resulting in persistent academic struggles for many children with SCD. A school intervention program is a feasible way to facilitate interaction between parents and schools to optimize educational experiences and outcomes. Disclosures No relevant conflicts of interest to declare.

Ensuring the Life-Span Benefits of Newborn Screening.

Newborn screening is a highly successful public health program that has led to major improvements in outcomes for a variety of conditions otherwise associated with long-term disability and even death.1 In the United States, newborn screening is provided to every newborn, regardless of circumstance, leading to the identification of >13 000 newborns with a significant condition each year.1 Most of these individuals require specialized care over their life span. However, public health involvement in newborn screening typically ends once the condition has been diagnosed. This can lead to gaps in care and impede the ability to collect the data necessary for quality improvement and assess treatment effectiveness. The public health activities in newborn screening include choosing which conditions to screen for, implementing screening and monitoring quality, and ensuring follow-up testing and referrals after positive screen results. After referral for diagnosis, the public health mandate for most states ends, and the responsibility for care rests with pediatricians and other clinicians. Unfortunately, the lifelong management of the rare conditions identified through newborn screening can break down at multiple points, even for conditions that have been included in newborn screening for decades. For example, many children with sickle cell disease do not receive life-saving antibiotic prophylaxis2; the management of children with congenital hypothyroidism may be inconsistent with recommended care, undermining optimal cognitive development3; and adults with phenylketonuria often have limited access to the specialists and medical foods necessary to protect against neurocognitive impairment.4 The complexity of follow-up care has increased with the expansion … Address correspondence to Alex R. Kemper, MD, MPH, MS, Division of Ambulatory Pediatrics, Nationwide Children’s Hospital, 700 Children’s Dr, LAC5411, Columbus, OH 43205-2664. E-mail: alex.kemper{at}nationwidechildrens.org

Neurodevelopmental and Academic Outcomes in Children With Orofacial Clefts: A Systematic Review.

Children with orofacial clefts (OFCs) are reported to have worse neurodevelopmental outcomes than unaffected peers, although study methodologies and findings are highly variable and trends in outcomes by age remain unexplored. To examine the strength of the evidence and explore trends in neurodevelopment by age. A systematic review was conducted of studies published from January 1, 1980, through November 3, 2017. Studies were independently screened by the authors and included in the review if they met predetermined eligibility criteria: (1) children and/or youth (<25 years) with OFCs were studied, and (2) neurodevelopmental or academic outcomes were included. The authors independently evaluated study quality and extracted outcome data. Thirty-one studies involving 10 143 patients with OFCs and 2 017 360 controls met eligibility criteria. Although the quality of the studies varied, patients with OFCs consistently performed worse than their peers on neurodevelopmental and academic measures. In infancy, differences were observed on multiple developmental outcomes (eg, cognition, motor skills, and language), and in later childhood and adolescence, differences were manifest on several indicators of academic achievement (eg, use of special education services, grades, and scores on standardized measures). Heterogeneity in study designs, methods, and outcomes prevented statistical pooling and modeling for meta-analysis. Children with OFCs exhibit neurodevelopmental and academic deficits compared with their unaffected peers. Although the nature of these deficits changes with development, differences are observed from infancy through adolescence. Clinicians should monitor neurodevelopment in children with OFCs and support them appropriately.

How do economic downturns affect the mental health of children? Evidence from the National Health Interview Survey.

Research linking economic conditions and health often does not consider children's mental health problems, which are the most common and consequential health issues for children and adolescents. We examine the effects of unemployment rates and housing prices on well-validated child and adolescent mental health outcomes and use of special education services for emotional problems in the 2001-2013 National Health Interview Survey. We find that the effects of economic conditions on children's mental health are clinically and economically meaningful; children's mental health outcomes worsen as the economy weakens. The effects of economic conditions on child and adolescent mental health are pervasive, found in almost every subgroup that we examine. The use of special education services for emotional problems also rises when economic conditions worsen. Our analyses of possible mechanisms that link economic conditions to child mental health suggest that parental unemployment cannot fully explain the relationship between economic conditions and child mental health.

Special Education Service Use by Children with Autism Spectrum Disorder.

In the last decade, the prevalence of children with autism spectrum disorder (ASD) without intellectual disability (ID) in schools has increased. However, there is a paucity of information on special education placement, service use, and relationships between service use and demographic variables for children with ASD without ID. This study aimed to describe and explore variation in type and amount of special education services provided to (N = 89) children with ASD. Results indicated that the largest percentage of children received services under the Autism classification (56.2%) and were in partial-inclusion settings (40.4%). The main services received were speech (70.8%) and occupational (56.2%) therapies, while few children received behavior plans (15.7%) or social skills instruction (16.9%). Correlates with service use are described.

Academic and Behavioral Outcomes in School-Age South African Children Following Severe Traumatic Brain Injury.

Background: Children who have sustained severe traumatic brain injuries (TBIs) demonstrate a range of post-injury neurocognitive and behavioral sequelae, which may have adverse effects on their academic and behavioral outcomes and interfere with school re-entry, educational progress, and quality of life. These post-TBI sequelae are exacerbated within the context of a resource-poor country like South Africa (SA) where the education system is in a somewhat precarious state especially for those from disadvantaged backgrounds.Objectives: To describe behavioral and academic outcomes of a group of school-aged SA children following severe TBI.Methods: The sample included 27 school-age children who were admitted to the Red Cross War Memorial Children's Hospital (RXH), SA, between 2006 and 2011 for closed severe TBI and who received intracranial monitoring. We collected behavioral data using the Child Behavior Checklist (CBCL) and the Behavior Rating Inventory of Executive Function (BRIEF) and academic information sourced from the BRIEF, CBCL, medical folders, and caregivers. Analyses include descriptive statistics and bivariate correlation matrices.Results: The descriptive results show that (1) more than half of the participants experienced clinically-significant behavioral problems across the CBCL scales, (2) the working memory BRIEF subscale appeared to be the most problematic subdomain, (3) two thirds of the sample were receiving some form of, or were in the process of being placed in, special needs education, (4) there was a three-fold increase in the use of special education services from pre- to post-injury, and (5) more than half (n = 16) of the sample repeated at least one grade after returning to school post-injury. Correlation analyses results suggest that children with increased externalizing behavioral problems and executive dysfunction are more likely to repeat a grade post-injury; and that children with executive dysfunction post-TBI are more likely to require some form of special educational services.Conclusion: While there is a vast amount of literature on pediatric TBI (pTBI) academic and behavioral outcomes, little literature exists on the pTBI population from the developing world and SA specifically. This is important to address given unique challenges that face the country and its educational system, and its implications for the management and care of children post-TBI.

Long-Term Course After Adaptive Multimodal Treatment for Children With ADHD: An 8-Year Follow-Up

Objective: This study reassessed adolescents and young adults (15-22 years old) who received individually tailored multimodal treatment for ADHD (behavior therapy and/or stimulant medication) during childhood 6 to 12 years after treatment (M = 8.8 years, SD = 1.6). Method: All participants (N = 75) provided information about their social functioning. Most parents (83%) completed behavior rating scales. Results: Participants demonstrated significant improvement in behavior during the follow-up period with effect sizes on ADHD symptoms of d = 1.2 and 68% of the former patients in the normal range at follow-up. Participants reported elevated rates of grade retention (51%), school dropout (13%), special education service use (17%), school change (47%), and conviction (16%), but few were unemployed (4%). Conclusion: This study provides evidence that the effects of individually tailored multimodal treatment for ADHD in childhood are maintained into adolescence and young adulthood. No hints could be found that continued medication results in a more favorable long-term outcome.

MgSO4 for neuroprotection

Survivors of very preterm birth often have neurodevelopmental abnormalities that are certainly multifactoral in origin. Both antenatal and postnatal exposures can contribute to these adverse outcomes. One of the few interventions that has been tested in randomized controlled trials is maternal treatment with MgSO4 prior to very preterm delivery. This intervention, developed based on the frequent use of MgSO4 as a tocolytic for preterm labor, decreased cerebral palsy diagnosed at 2 years of age. In this issue of The Journal, Chollat et al report the school-age outcomes for one of the MgSO4 trials. Although not statistically significant, infants exposed to MgSO4 had less motor dysfunction, fewer behavioral disorders, fewer cognitive difficulties, less frequent repeating of school grade, and less use of special education services than the control infants. An unsatisfying aspect of this therapy is that the mechanism of action of MgSO4 on the very preterm fetus/newborn is unknown. Nevertheless, all assessments were in the direction of benefit, at least demonstrating no harm, from the MgSO4 exposure at school age.Article page 398 Survivors of very preterm birth often have neurodevelopmental abnormalities that are certainly multifactoral in origin. Both antenatal and postnatal exposures can contribute to these adverse outcomes. One of the few interventions that has been tested in randomized controlled trials is maternal treatment with MgSO4 prior to very preterm delivery. This intervention, developed based on the frequent use of MgSO4 as a tocolytic for preterm labor, decreased cerebral palsy diagnosed at 2 years of age. In this issue of The Journal, Chollat et al report the school-age outcomes for one of the MgSO4 trials. Although not statistically significant, infants exposed to MgSO4 had less motor dysfunction, fewer behavioral disorders, fewer cognitive difficulties, less frequent repeating of school grade, and less use of special education services than the control infants. An unsatisfying aspect of this therapy is that the mechanism of action of MgSO4 on the very preterm fetus/newborn is unknown. Nevertheless, all assessments were in the direction of benefit, at least demonstrating no harm, from the MgSO4 exposure at school age. Article page 398 School-Age Outcomes following a Randomized Controlled Trial of Magnesium Sulfate for Neuroprotection of Preterm InfantsThe Journal of PediatricsVol. 165Issue 2PreviewIn a French randomized trial, children at school-age demonstrated no evidence of harm from fetal exposure to MgSO4 before very preterm birth. Motor dysfunction/death, qualitative behavioral disorders, cognitive difficulties, school grade repetition, and education services were decreased in the children exposed to MgSO4, although the differences were not significant. Full-Text PDF

Academic achievement of children and adolescents with oral clefts.

Previous studies of academic achievement of children with oral clefts have mostly relied on small, clinic-based samples prone to ascertainment bias. In the first study in the United States to use a population-based sample with direct assessment, we evaluated the academic achievement of children with oral clefts relative to their classmates. Children born with isolated oral clefts in Iowa from 1983 to 2003 were identified from the Iowa Registry for Congenital and Inherited Disorders and matched to unaffected classmates by gender, school/school district, and month and year of birth. Academic achievement was assessed by using standardized tests of academic progress developed by the Iowa Testing Programs. Iowa Testing Programs data were linked to birth certificates for all children. Regression models controlled for household demographic and socioeconomic factors. The analytical sample included 588 children with clefts contributing 3735 child-grade observations and 1874 classmates contributing 13 159 child-grade observations. Children with oral clefts had lower scores than their classmates across all domains and school levels, with a 5-percentile difference in the overall composite score. Children with clefts were approximately one-half grade level behind their classmates and had higher rates of academic underachievement and use of special education services by 8 percentage points. Group differences were slightly lower but remained large and significant after adjusting for many background characteristics. Children with oral clefts underperformed across all academic areas and grade levels compared with their classmates. The results support a model of early testing and intervention among affected children to identify and reduce academic deficits.

From the Student Perspective: Experiences of Middle and High School Students in Online Learning

The authors conducted a study to examine experiences and preferences of middle and high school students in online learning environments. An online questionnaire was supplied to administrators of online schools, who then distributed the questionnaire to students enrolled in their schools. Topics addressed in the questionnaire included involvement in online and traditional school settings, use of special education services, participation in extracurricular activities, actual and preferred interactions with teachers and online peers, bullying, and overall opinions regarding online learning. The findings from this study are explained as well as limitations and implications for future research.

Urinary Polycyclic Aromatic Hydrocarbon Metabolites and Attention/Deficit Hyperactivity Disorder, Learning Disability, and Special Education in U.S. Children Aged 6 to 15

Exposure to polycyclic aromatic hydrocarbons (PAHs) adversely affects child neurodevelopment, but little is known about the relationship between PAHs and clinically significant developmental disorders. We examined the relationship between childhood measures of PAH exposure and prevalence of attention deficit/hyperactivity disorder (ADHD), learning disability (LD), and special education (SE) in a nationally representative sample of 1,257 U.S. children 6–15 years of age. Data were obtained from the National Health and Nutrition Examination Survey (NHANES) 2001–2004. PAH exposure was measured by urinary metabolite concentrations. Outcomes were defined by parental report of (1) ever doctor-diagnosed ADHD, (2) ever doctor- or school representative-identified LD, and (3) receipt of SE or early intervention services. Multivariate logistic regression accounting for survey sampling was used to determine the associations between PAH metabolites and ADHD, LD, and SE. Children exposed to higher levels of fluorine metabolites had a 2-fold increased odds (95% C.I. 1.1, 3.8) of SE, and this association was more apparent in males (OR 2.3; 95% C.I. 1.2, 4.1) than in females (OR 1.8; 95% C.I. 0.6, 5.4). No other consistent pattern of developmental disorders was associated with urinary PAH metabolites. However, concurrent exposure to PAH fluorine metabolites may increase use of special education services among U.S. children.

Integrating school-wide Positive Behavioral Interventions and Supports with tier 2 coaching to student support teams: The PBISplusmodel

Schools continue to display an interest in, and efficiency with, the implementation of the universal level of Positive Behavioral Interventions and Supports (PBIS), but often struggle to integrate tier 2 supports to address the needs of students at risk for behavioural or academic difficulties. School practitioners and researchers are increasingly interested in optimizing programme implementation through coaching and integrating supports at the more advanced tiers of PBIS. The current paper describes one such model, called PBISplus, which builds on the multi-tiered PBIS model by providing tailored training in the implementation of functional behavioural assessments, the student support teaming process, cultural proficiency, and evidence-based practices (e.g. Check-In/Check-Out) by a tier 2 coach. After describing the process for integrating these core elements with the universal PBIS model and the coaching model developed to facilitate that process, we summarize preliminary findings from a three-year group-randomized controlled trial of the PBISplus model in 42 Maryland elementary schools. Significant effects were observed on teacher efficacy and student outcomes, including rates of special education service use and teacher-reported academic performance. Implications for future research aimed at integrating programmes within the three-tiered PBIS framework are discussed.

Use of Special Education Services Among Children With and Without Congenital Gastrointestinal Anomalies

Our objective was to evaluate the relationship between congenital gastrointestinal anomalies requiring neonatal surgery and neurodevelopmental outcome. Among the children born in metropolitan Atlanta during 1982-2001 who survived to age 1 year (N = 762,824), we identified children with congenital gastrointestinal anomalies via linkage with the Metropolitan Atlanta Congenital Defects Program and children who received special education services via linkage with the Special Education Database of Metropolitan Atlanta. Several modest increases in special education service use were observed among children with isolated congenital gastrointestinal anomalies; no association was statistically significant. Among children with Hirschsprung disease, gastroschisis, esophageal atresia, intestinal malrotation, bowel atresia, or imperforate anus who had multiple anomalies, we observed statistically significant increases in special education service use.

Special Education Services for Children Involved with Child Welfare/Child Protective Services

This paper examines educational and behavioral characteristics and special education service use for a subsample of 2477 children enrolled in the National Survey of Child and Adolescent Wellbeing (NSCAW), the first national, longitudinal study of youth following investigation for alleged maltreatment through the child welfare system (CW). Almost one-fifth of children were characterized as severe on educational indices and 47% as severe on behavioral indices. Nineteen percent were currently receiving special education services, 17% had previously received these services, and the remainder had never received them. Over half (51%) of children characterized as severe on educational or behavioral indices were not receiving special education services. Caregivers indicated that youth were being served primarily under categories of Emotional Disturbance (35%) and Speech and Language Impairment (30%). Further exploration of the role of schools, particularly school psychologists, in providing supports for children involved with CW is discussed.

Longitudinal Impact of Two Universal Preventive Interventions in First Grade on Educational Outcomes in High School.

This study examined the longitudinal effects of 2 first-grade universal preventive interventions on academic outcomes (e.g., achievement, special education service use, graduation, postsecondary education) through age 19 in a sample of 678 urban, primarily African American children. The classroom-centered intervention combined the Good Behavior Game (H. H. Barrish, Saunders, & Wolfe, 1969) with an enhanced academic curriculum, whereas a second intervention, the Family-School Partnership, focused on promoting parental involvement in educational activities and bolstering parents' behavior management strategies. Both programs aimed to address the proximal targets of aggressive behavior and poor academic achievement. Although the effects varied by gender, the classroom-centered intervention was associated with higher scores on standardized achievement tests, greater odds of high school graduation and college attendance, and reduced odds of special education service use. The intervention effects of the Family-School Partnership were in the expected direction; however, only 1 effect reached statistical significance. The findings of this randomized controlled trial illustrate the long-term educational impact of preventive interventions in early elementary school.

Looking Forward and Backward in Records for Risks among Homicidal Youth

To identify risks for commission of homicide, 26 convicted Homicidal Youth (M age = 14.9 yr., SD = 1.4; n = 26; 1 girl, 25 boys) were matched with 26 Nonviolent Delinquents and 26 clinic-referred Controls. Youth were tracked backward 8 years (M = 7.7 yr., SD = 15) and forward 3 years (M = 3.1 yr., SD = 1.2) in records. Data analysis was Shao's bootstrapped logistic regression yielding area under the curve (AUC) and odds ratios (OR). Predictors of homicide were poorer executive function (OR = 7.04e+40), violent family (OR = 4.01e-16), and alcohol abuse (OR = 7.33e-17; AUC = .97, 95% CI = .77-.99). From earlier studies, 101 Homicidal Youth and their Controls were reanalyzed similarly. Predictors were poorer executive function (OR = 6.51), lower social maturity (OR = 0.28), weapon possession (OR = 26.10), and gang membership (OR = 4.14; AUC = .98, 95% CI = .96-.99). Groups were combined, i.e., 26 and 101 Homicidal; 127 Homicidal Youth (7 girls, 120 boys) and their matched Controls were tracked in records. The predictor was poorer executive function (OR = 3.34e-21; AUC = .98, 95% CI = .96-.97). When 127 Homicidal Youth were compared with 127 matched Nonviolent Delinquents, predictors were poorer executive function (OR = 2.83e-02), weapon possession (OR = 1.63e-10), lower social maturity (OR = 1.15), and use of special education services (OR = .94; AUC = .94, 95% CI = .37-.99).

Health of Children 3 to 17 Years of Age With Down Syndrome in the 1997–2005 National Health Interview Survey

This study provides population-based estimates of recent medical conditions, concurrent developmental disorders, and health impact and utilization indicators for US children with and without Down syndrome. The sample included children 3 to 17 years of age in the 1997-2005 National Health Interview Survey Child Sample Core and specifically included 146 children with Down syndrome, 604 children with mental retardation but without Down syndrome, and 95 454 children without either condition reported. Developmental and medical conditions, health status, and service use were reported by parents or other knowledgeable caregivers. After adjustment for demographic factors, children with Down syndrome had higher odds, compared with children without mental retardation, of recent food/digestive allergy, frequent diarrhea/colitis, > or =3 ear infections in the previous year, very recent head/chest cold, and developmental disabilities other than mental retardation. They had increased odds that approached significance for recent seizures, very recent stomach/intestinal illness, and asthma. They had substantially higher rates (threefold or higher, compared with children without mental retardation) for nearly all health impact and health and special education service use measures. Of note, >25% of children with Down syndrome needed help with personal care, regularly took prescription medications, had recently seen a medical specialist, and received physical therapy or related therapy. The comparison group with mental retardation without Down syndrome represented many children with multiple serious disabilities who also had high rates of medical conditions and high levels of health impact and service use. These findings provide empirical, population-based data to inform guidelines for frequent monitoring and support for children with Down syndrome.

Use of special education services by children with orofacial clefts

Our objective was to evaluate the use of special education services by children with orofacial clefts (OFCs). We linked the birth certificates of children born from 1982-2001 in five counties of metropolitan Atlanta to a population-based birth defects surveillance system to identify children with OFCs, and to the special education files for the school years 1992-2004 to identify children who used special education services. The special education data contained exceptionalities and services rendered for each school year. Prevalence ratios (PRs) and 95% CIs were calculated. The data were stratified by race/ethnicity, maternal education, type of OFC, and the presence of associated major malformations. In addition, we assessed the age at which special education began and the amount of time spent receiving services. Of the 777 children with OFCs, 201 (26%) were in special education at least 1 year compared with 8% of the children who had no major birth defects, yielding a PR of 3.2 (95% CI: 2.9-3.6). The most common exceptionality or service for children with an OFC was speech and language services. Compared with children with no birth defects, children with an OFC were four times more likely to be in this exceptionality (PR 3.8; 95% CI: 3.3-4.3). After excluding children in speech and language services, children with OFCs were still more likely to use special education services (PR 2.4; 95% CI: 1.7-3.2). Children with OFCs used special education services more often than children without birth defects. This information can help in planning for future population needs.