"My son Alexander is 11 years old. It was not until he was about 4 years old that I ceased t... more "My son Alexander is 11 years old. It was not until he was about 4 years old that I ceased thinking that he was 9just like me9 — bull-headed and slow-to-speak as a toddler, disruptive and inconsiderate in grade school — and accepted his diagnosis ... ." Clarence Schutt, a Princeton professor and father of a child with autism (from NAARRATIVE, newsletter of the National Alliance for Autism Research, 1997) Autism spectrum disorders (ASD) are a collection of neurologically based developmental disorders characterized by impaired social interaction, impaired verbal and nonverbal communication, and abnormal, restricted, stereotyped behaviors.
PURPOSE Young adults with disability experience barriers to healthcare access and are at risk for... more PURPOSE Young adults with disability experience barriers to healthcare access and are at risk for not receiving needed services as they transition from pediatric to adult health systems. This study examined patterns of healthcare utilization for young adults with disability and potential barriers to receipt of care. METHODS Data from the 2014 to 2018 National Health Interview Survey were analyzed to examine differences in service utilization, unmet need, care satisfaction, and financial worry between young adults (18-30 years) with and without disability (unweighted n = 15,710). Odds ratios were adjusted for individual, family, and interview characteristics. RESULTS Compared to those without disability, young adults with disability were more likely to have had an emergency room visit in the past year (39.2% vs. 19.5%). They were also more likely to have a usual source of care when sick (82.2% vs. 75%). Among young adults who affirmed they had a usual place of care, those with disability were more likely to use the emergency room as their usual place of care (5.3% vs. 1.8%). A greater percentage of young adults with disability delayed medical care due to cost (19.1% vs. 8.9%) and reported an unmet medical need (21% vs. 10.2%). CONCLUSIONS Findings highlight gaps in healthcare access for young adults with disability. Differences in healthcare utilization patterns for young adults with disability and factors that may negatively influence health outcomes for this population were found. Further research focused on the continuity of healthcare services in this age group through the healthcare transition period may provide additional insight into these discrepancies.
<p>*Proportions and prevalence estimates with numerators <5 children are suppressed due ... more <p>*Proportions and prevalence estimates with numerators <5 children are suppressed due to small sample sizes. Trend analyses reflect weighted prevalence for surveillance years with n<5 children and the subsequent surveillance year (e.g., trend for Hispanic children with ID combined 1991–1992 numerators and denominators for the first time period).</p><p>Trends in prevalence, demographic characteristics, and severity of children with intellectual disability, 1991–2010<sup><a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0124120#t001fn001" target="_blank">*</a></sup>.</p
Developmental medicine and child neurology, Jan 23, 2015
To determine whether racial disparities in cerebral palsy (CP) risk among US children persist aft... more To determine whether racial disparities in cerebral palsy (CP) risk among US children persist after controlling for socio-economic status (SES) (here indicated by maternal education) and perinatal risk factors. A population-based birth cohort study was conducted using the Autism and Developmental Disabilities Monitoring Network surveillance and birth data for 8-year-old children residing in multi-county areas in Alabama, Georgia, Missouri, and Wisconsin between 2002 and 2008. The birth cohort comparison group included 458 027 children and the case group included 1570 children with CP, 1202 with available birth records. χ(2) tests were performed to evaluate associations and logistic regression was used to calculate relative risks (RR) and adjusted odds ratios (OR) with 95% confidence intervals (CI). The risk of spastic CP was more than 50% higher for black versus white children (RR 1.52, 95% CI 1.33-1.73), and this greater risk persisted after adjustment for SES (OR 1.35, 95% CI 1.18...
Early identification of children with developmental delays is important in the primary care setti... more Early identification of children with developmental delays is important in the primary care setting. The pediatrician is the best-informed professional with whom many families have contact during the first 5 years of a child's life. Parents look to the pediatrician to be the expert not only on childhood illnesses but also on development. Early intervention services for children from birth to 3 years of age and early childhood education services for children 3 to 5 years of age are widely available for children with developmental delays or disabilities in the United States. Developmental screening instruments have improved over the years, and instruments that are accurate and easy to use in an office setting are now available to the pediatrician. This statement provides recommendations for screening infants and young children and intervening with families to identify developmental delays and disabilities.
This statement reviews the basis for two new therapies for autism—auditory integration training a... more This statement reviews the basis for two new therapies for autism—auditory integration training and facilitative communication. Both therapies seek to improve communication skills. Currently available information does not support the claims of proponents that these treatments are efficacious. Their use does not appear warranted at this time, except within research protocols.
Children and adolescents with chronic diseases and disabling conditions often need educationally ... more Children and adolescents with chronic diseases and disabling conditions often need educationally related services. As medical home providers, physicians and other health care professionals can assist children, adolescents, and their families with the complex federal, state, and local laws, regulations, and systems associated with these services. Expanded roles for physicians and other health care professionals in individualized family service plan, individualized education plan, and Section 504 plan development and implementation are recommended. Recent updates to the Individuals With Disabilities Education Act will also affect these services. Funding for these services by private and nonprivate sources also continue to affect the availability of these educationally related services. The complex range of federal, state, and local laws, regulations, and systems for special education and related services for children and adolescents in public schools is beyond the scope of this statem...
JAMA: The Journal of the American Medical Association, 1996
To examine the relationship between prenatal magnesium sulfate exposure and the risk for cerebral... more To examine the relationship between prenatal magnesium sulfate exposure and the risk for cerebral palsy (CP) or mental retardation (MR) among very low-birth-weight (VLBW; &lt;1500 g) children. Secondarily, to investigate the effect of prenatal magnesium sulfate exposure on VLBW infant mortality. Cohort study with follow-up to 1 year of age; a subset followed up to 3 to 5 years. Twenty-nine Georgia counties, including the 5-county Atlanta metropolitan area. All VLBW births (N=1097) occurring during 2 years (1986-1988); all metropolitan Atlanta VLBW neonates who survived infancy (N=519). Infant mortality as determined from vital statistics records. Development of CP or MR by 3 to 5 years of age among metropolitan Atlanta VLBW survivors as determined from the Metropolitan Atlanta Developmental Disabilities Surveillance Program. For the entire cohort, there was no association between prenatal magnesium sulfate exposure and infant mortality (adjusted rate ratio, 1.02; 95% confidence interval [CI], 0.83-1.25). Among Atlanta-born survivors, those exposed to magnesium sulfate had a lower prevalence of CP or MR than those not exposed (CP: magnesium sulfate, 0.9%, no magnesium sulfate, 7.7%, crude odds ratio [OR], 0.11, 95% CI, 0.02-0.81; MR: magnesium sulfate, 1.8%, no magnesium sulfate, 5.8%, crude OR, 0.30, 95% CI, 0.07-1.29). Multivariable adjustment had no appreciable effect on the ORs for CP or MR, but the CIs included 1.0. A reduced risk for CP, and possibly MR, among VLBW children is associated with prenatal magnesium sulfate exposure. The reduced risk for childhood CP or MR does not appear to be due to selective mortality of magnesium sulfate-exposed infants.
To fill gaps in crucial data needed for health and educational planning, we determined the preval... more To fill gaps in crucial data needed for health and educational planning, we determined the prevalence of developmental disabilities in US children and in selected populations for a recent 12-year period.
Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether mater... more Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether maternal and child birth country are discordant. We explored associations between ASD and maternal and paternal nativity in a sample of US-born non-Hispanic white (NHW, n = 37,265) and US-born Hispanic (n = 4,690) children in the 2007 National Survey of Children&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s Health (NSCH). We assessed ASD prevalence within race-ethnicity and parental nativity subgroups. Prevalence ratios (aPR), comparing each group to NHW children with 2 US-born parents, were adjusted for child age, sex, and receipt of care in a medical home. Estimates were weighted to reflect US noninstitutionalized children. Standard errors were adjusted to account for the complex sample design. In NHW children with 2 US-born parents, ASD prevalence was 1.19%; estimates were similar for NHW children with a foreign-born mother or father. There was a striking heterogeneity between Hispanic children with 2 US-born versus 2 foreign-born parents (ASD prevalence 2.39% versus 0.31%, p = .05). Even after adjustment, PRs comparing ASD prevalence in Hispanic versus NHW children were vastly different for Hispanic subgroups, suggesting a substantially lower prevalence for Hispanic children with both parents foreign-born (aPR 0.2, 95% confidence interval 0.1-0.5) and a higher prevalence for Hispanic children with both parents US-born (aPR 2.0 [0.8-4.6]). Previous studies comparing ASD prevalence between NHW and Hispanic children based on a composite Hispanic grouping without consideration of parental nativity likely missed important differences between these racial-ethnic groups. Continuing efforts toward improving early identification in Hispanic children are needed.
American Journal on Intellectual and Developmental Disabilities, 2011
Surveillance and epidemiologic research on intellectual disability often do not incorporate adapt... more Surveillance and epidemiologic research on intellectual disability often do not incorporate adaptive functioning (AF) data. Exclusion of AF data leads to overestimation of the prevalence of intellectual disability, the extent of which is not known. In this study, the authors evaluated the effect of incorporating AF data on overall intellectual disability prevalence according to sociodemographic, economic, and severity characteristics. Between 2002 and 2006, the Metropolitan Atlanta Developmental Disabilities Surveillance Program identified 1,595 8-year-old children who met the study's intellectual disability surveillance-case definition of IQ ≤ 70. AF scores were not available for 9.2% of the case children, specifically those with mild intellectual disability and low socioeconomic backgrounds. Prevalence estimates showed few substantive changes when incorporating AF data. The authors conclude that use of IQ data alone appears to be appropriate for measuring population intellectu...
"My son Alexander is 11 years old. It was not until he was about 4 years old that I ceased t... more "My son Alexander is 11 years old. It was not until he was about 4 years old that I ceased thinking that he was 9just like me9 — bull-headed and slow-to-speak as a toddler, disruptive and inconsiderate in grade school — and accepted his diagnosis ... ." Clarence Schutt, a Princeton professor and father of a child with autism (from NAARRATIVE, newsletter of the National Alliance for Autism Research, 1997) Autism spectrum disorders (ASD) are a collection of neurologically based developmental disorders characterized by impaired social interaction, impaired verbal and nonverbal communication, and abnormal, restricted, stereotyped behaviors.
PURPOSE Young adults with disability experience barriers to healthcare access and are at risk for... more PURPOSE Young adults with disability experience barriers to healthcare access and are at risk for not receiving needed services as they transition from pediatric to adult health systems. This study examined patterns of healthcare utilization for young adults with disability and potential barriers to receipt of care. METHODS Data from the 2014 to 2018 National Health Interview Survey were analyzed to examine differences in service utilization, unmet need, care satisfaction, and financial worry between young adults (18-30 years) with and without disability (unweighted n = 15,710). Odds ratios were adjusted for individual, family, and interview characteristics. RESULTS Compared to those without disability, young adults with disability were more likely to have had an emergency room visit in the past year (39.2% vs. 19.5%). They were also more likely to have a usual source of care when sick (82.2% vs. 75%). Among young adults who affirmed they had a usual place of care, those with disability were more likely to use the emergency room as their usual place of care (5.3% vs. 1.8%). A greater percentage of young adults with disability delayed medical care due to cost (19.1% vs. 8.9%) and reported an unmet medical need (21% vs. 10.2%). CONCLUSIONS Findings highlight gaps in healthcare access for young adults with disability. Differences in healthcare utilization patterns for young adults with disability and factors that may negatively influence health outcomes for this population were found. Further research focused on the continuity of healthcare services in this age group through the healthcare transition period may provide additional insight into these discrepancies.
<p>*Proportions and prevalence estimates with numerators <5 children are suppressed due ... more <p>*Proportions and prevalence estimates with numerators <5 children are suppressed due to small sample sizes. Trend analyses reflect weighted prevalence for surveillance years with n<5 children and the subsequent surveillance year (e.g., trend for Hispanic children with ID combined 1991–1992 numerators and denominators for the first time period).</p><p>Trends in prevalence, demographic characteristics, and severity of children with intellectual disability, 1991–2010<sup><a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0124120#t001fn001" target="_blank">*</a></sup>.</p
Developmental medicine and child neurology, Jan 23, 2015
To determine whether racial disparities in cerebral palsy (CP) risk among US children persist aft... more To determine whether racial disparities in cerebral palsy (CP) risk among US children persist after controlling for socio-economic status (SES) (here indicated by maternal education) and perinatal risk factors. A population-based birth cohort study was conducted using the Autism and Developmental Disabilities Monitoring Network surveillance and birth data for 8-year-old children residing in multi-county areas in Alabama, Georgia, Missouri, and Wisconsin between 2002 and 2008. The birth cohort comparison group included 458 027 children and the case group included 1570 children with CP, 1202 with available birth records. χ(2) tests were performed to evaluate associations and logistic regression was used to calculate relative risks (RR) and adjusted odds ratios (OR) with 95% confidence intervals (CI). The risk of spastic CP was more than 50% higher for black versus white children (RR 1.52, 95% CI 1.33-1.73), and this greater risk persisted after adjustment for SES (OR 1.35, 95% CI 1.18...
Early identification of children with developmental delays is important in the primary care setti... more Early identification of children with developmental delays is important in the primary care setting. The pediatrician is the best-informed professional with whom many families have contact during the first 5 years of a child's life. Parents look to the pediatrician to be the expert not only on childhood illnesses but also on development. Early intervention services for children from birth to 3 years of age and early childhood education services for children 3 to 5 years of age are widely available for children with developmental delays or disabilities in the United States. Developmental screening instruments have improved over the years, and instruments that are accurate and easy to use in an office setting are now available to the pediatrician. This statement provides recommendations for screening infants and young children and intervening with families to identify developmental delays and disabilities.
This statement reviews the basis for two new therapies for autism—auditory integration training a... more This statement reviews the basis for two new therapies for autism—auditory integration training and facilitative communication. Both therapies seek to improve communication skills. Currently available information does not support the claims of proponents that these treatments are efficacious. Their use does not appear warranted at this time, except within research protocols.
Children and adolescents with chronic diseases and disabling conditions often need educationally ... more Children and adolescents with chronic diseases and disabling conditions often need educationally related services. As medical home providers, physicians and other health care professionals can assist children, adolescents, and their families with the complex federal, state, and local laws, regulations, and systems associated with these services. Expanded roles for physicians and other health care professionals in individualized family service plan, individualized education plan, and Section 504 plan development and implementation are recommended. Recent updates to the Individuals With Disabilities Education Act will also affect these services. Funding for these services by private and nonprivate sources also continue to affect the availability of these educationally related services. The complex range of federal, state, and local laws, regulations, and systems for special education and related services for children and adolescents in public schools is beyond the scope of this statem...
JAMA: The Journal of the American Medical Association, 1996
To examine the relationship between prenatal magnesium sulfate exposure and the risk for cerebral... more To examine the relationship between prenatal magnesium sulfate exposure and the risk for cerebral palsy (CP) or mental retardation (MR) among very low-birth-weight (VLBW; &lt;1500 g) children. Secondarily, to investigate the effect of prenatal magnesium sulfate exposure on VLBW infant mortality. Cohort study with follow-up to 1 year of age; a subset followed up to 3 to 5 years. Twenty-nine Georgia counties, including the 5-county Atlanta metropolitan area. All VLBW births (N=1097) occurring during 2 years (1986-1988); all metropolitan Atlanta VLBW neonates who survived infancy (N=519). Infant mortality as determined from vital statistics records. Development of CP or MR by 3 to 5 years of age among metropolitan Atlanta VLBW survivors as determined from the Metropolitan Atlanta Developmental Disabilities Surveillance Program. For the entire cohort, there was no association between prenatal magnesium sulfate exposure and infant mortality (adjusted rate ratio, 1.02; 95% confidence interval [CI], 0.83-1.25). Among Atlanta-born survivors, those exposed to magnesium sulfate had a lower prevalence of CP or MR than those not exposed (CP: magnesium sulfate, 0.9%, no magnesium sulfate, 7.7%, crude odds ratio [OR], 0.11, 95% CI, 0.02-0.81; MR: magnesium sulfate, 1.8%, no magnesium sulfate, 5.8%, crude OR, 0.30, 95% CI, 0.07-1.29). Multivariable adjustment had no appreciable effect on the ORs for CP or MR, but the CIs included 1.0. A reduced risk for CP, and possibly MR, among VLBW children is associated with prenatal magnesium sulfate exposure. The reduced risk for childhood CP or MR does not appear to be due to selective mortality of magnesium sulfate-exposed infants.
To fill gaps in crucial data needed for health and educational planning, we determined the preval... more To fill gaps in crucial data needed for health and educational planning, we determined the prevalence of developmental disabilities in US children and in selected populations for a recent 12-year period.
Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether mater... more Limited studies suggest the prevalence of autism spectrum disorders (ASD) varies by whether maternal and child birth country are discordant. We explored associations between ASD and maternal and paternal nativity in a sample of US-born non-Hispanic white (NHW, n = 37,265) and US-born Hispanic (n = 4,690) children in the 2007 National Survey of Children&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s Health (NSCH). We assessed ASD prevalence within race-ethnicity and parental nativity subgroups. Prevalence ratios (aPR), comparing each group to NHW children with 2 US-born parents, were adjusted for child age, sex, and receipt of care in a medical home. Estimates were weighted to reflect US noninstitutionalized children. Standard errors were adjusted to account for the complex sample design. In NHW children with 2 US-born parents, ASD prevalence was 1.19%; estimates were similar for NHW children with a foreign-born mother or father. There was a striking heterogeneity between Hispanic children with 2 US-born versus 2 foreign-born parents (ASD prevalence 2.39% versus 0.31%, p = .05). Even after adjustment, PRs comparing ASD prevalence in Hispanic versus NHW children were vastly different for Hispanic subgroups, suggesting a substantially lower prevalence for Hispanic children with both parents foreign-born (aPR 0.2, 95% confidence interval 0.1-0.5) and a higher prevalence for Hispanic children with both parents US-born (aPR 2.0 [0.8-4.6]). Previous studies comparing ASD prevalence between NHW and Hispanic children based on a composite Hispanic grouping without consideration of parental nativity likely missed important differences between these racial-ethnic groups. Continuing efforts toward improving early identification in Hispanic children are needed.
American Journal on Intellectual and Developmental Disabilities, 2011
Surveillance and epidemiologic research on intellectual disability often do not incorporate adapt... more Surveillance and epidemiologic research on intellectual disability often do not incorporate adaptive functioning (AF) data. Exclusion of AF data leads to overestimation of the prevalence of intellectual disability, the extent of which is not known. In this study, the authors evaluated the effect of incorporating AF data on overall intellectual disability prevalence according to sociodemographic, economic, and severity characteristics. Between 2002 and 2006, the Metropolitan Atlanta Developmental Disabilities Surveillance Program identified 1,595 8-year-old children who met the study's intellectual disability surveillance-case definition of IQ ≤ 70. AF scores were not available for 9.2% of the case children, specifically those with mild intellectual disability and low socioeconomic backgrounds. Prevalence estimates showed few substantive changes when incorporating AF data. The authors conclude that use of IQ data alone appears to be appropriate for measuring population intellectu...
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