Beth M. McManus

The Effect of State Early Intervention Eligibility Policy on Participation Among a Cohort of Young CSHCN

OBJECTIVE: This purpose of this study was to describe differences in early intervention (EI) participation according to state among a cohort of young children with parent-reported developmental delays and disabilities. METHODS: Data were obtained from the 2005–2006 National Survey of Children With Special Health Care Needs to describe state differences in EI participation. Multilevel modeling was used to estimate the relative contributions of child sociodemographic and developmental characteristics, and state EI eligibility policy on EI participation. RESULTS: The overall rate of EI participation was 45.7% (23.1%–83.3% across the states). EI participants were less likely to be Hispanic, live in a multiracial family, be poor, have a developmental delay, or have a less severe condition/delay. The predicted probability of receiving EI was lower for children who lived in states with more strict EI eligibility criteria than those with liberal criteria (.43 vs .52). Poverty influenced this association, with the adjusted probabilities of receiving EI for poor (<100% federal poverty level) and nonpoor (>185% federal poverty level) children being .18 and .36, respectively (P < .05). Among nonpoor children, those who lived in states with strict eligibility criteria were nearly as likely as poor children who lived in states with liberal eligibility criteria to receive EI (.33 vs .36; P < .05). CONCLUSIONS: The results of this study reveal marked disparities and unmet needs in EI participation as a function of both characteristics of the child and the state program. Improving developmental services for vulnerable populations requires addressing these sources of disparity.

Parent–child interaction, maternal depressive symptoms and preterm infant cognitive function

Preterm infants are at risk for cognitive difficulties due to infant neurological immaturity and family social disadvantage, and this may be exacerbated by maternal depressive symptoms. This longitudinal study of infants born preterm (<35 weeks) or low birth weight (<2500 g) (n = 137) tests if maternal depressive symptoms at 4 months is associated with preterm childrens cognitive function at 16 months. Additionally, we test if this association is mediated by the quality of parent-child interaction at 9 months, and if these associations differ by levels of maternal social support. Childrens cognitive function was measured using the Bayley Scales of Infant Development, 2nd edition. Maternal depressive symptoms were measured using the Center for Epidemiologic Studies Depression Scale. Perceived social support was measured using the Maternal Support scale. The quality of parent-child interaction was measured using the Parent-Child Early Relational Assessment. Linear regression and structural equation modeling were used to test the research questions. Postnatal depression at 4 months is associated with lower cognitive function (mean difference = -5.22, 95% CI: [-10.19, -0.25]) at 16 months controlling for a host of socioeconomic characteristics. For mothers with fewer depressive symptoms, bolstering effects of maternal supports on childrens cognitive function were evident. We find no evidence for effect mediation by quality of parent-child interaction. Early exposure to maternal depressive symptoms appears to have a negative influence on preterm childrens later cognitive function. These findings suggest important policy and programmatic implications for early detection and intervention for families of preterm infants.

Modeling the Social Determinants of Caregiver Burden among Families of Children with Developmental Disabilities.

This study described predictors of caregiver burden among parents of children with developmental disabilities. The sample, obtained from the 2005-2006 National Survey of Children With Special Health Care Needs, included 12,225 children, aged 5 to 17 years, with a developmental disability. Structural equation modeling assessed the relationships between the factors of Caregiver Burden, Ease of Accessing and Navigating the Health Care System, and Unmet Health Care Needs. Caregiver burden was inversely associated with ease of accessing and navigating the health care system (β  =  -0.094, SE (β)  =  0.045) and positively associated with unmet health care needs (β  =  0.428, SE (β)  =  0.036). Parents of poor, minority, and uninsured children experienced significantly greater caregiver burden. Bolstering services, particularly for vulnerable families, may ameliorate caregiver burden.

The effect of aquatic therapy on functional mobility of infants and toddlers in early intervention.

Purpose: The purpose of this study was to determine the effect of aquatic therapy (AT) as an adjunct to home-based early intervention (EI) on differences in children’s functional mobility. Methods: Thirty-seven children of ages six to 30 months (x = 24.2; SD = 8.5) with delayed functional mobility participated in this study. The AT group (n = 15) received weekly AT in a community pool in addition to home-based EI with a physical therapist (PT) or occupational therapist (OT). A randomly selected comparison group (n = 22) received home-based EI with a PT or OT. Baseline and postintervention scores on the Gross Motor Subsection of the Mullen Scales of Early Learning were compared between the AT and comparison group. Results: The AT group demonstrated significantly greater (p < 0.05) gains in functional mobility than the comparison group. Conclusion: AT is a useful adjunct to EI to improve children’s functional mobility.

Effectiveness of part C early intervention physical, occupational, and speech therapy services for preterm or low birth weight infants in Wisconsin, United States.

OBJECTIVE To determine the effectiveness of policy-driven therapy (ie, Part C early intervention [EI]) in the context of varying maternal supports among preterm infants in Wisconsin. METHODS A longitudinal study of mother-infant dyads recruited from 3 newborn intensive care units in southeastern Wisconsin. Participation in EI-based therapy was collected at 36 months via parent-report. Cognitive function was measured at 16 months by use of the Bayley Scales of Infant Development (Mental Developmental Index), 2nd edition and at 24 and 36 months postterm via use of the Stanford-Binet Intelligence scale, 5th edition. Maternal support was measured at 4 months with the Maternal Support Scale. Propensity score matching was used to reduce selection bias. Latent growth models of matched pairs estimated the effect of EI therapy on cognitive function trajectories. Ordinary least squares regression estimated the differential effect of EI therapy on cognitive function at 16, 24, and 36 months postterm for mothers reporting more maternal supports. RESULTS Of the 128 infants, 41 received EI therapy and, of those, 32 (78%) were successfully matched with controls. The results of the matched analysis (n = 64) reveal that 1) receipt of therapy is inversely associated with cognitive function baseline (P = .04) and positively associated with trajectories (P = .03), 2) the number of maternal supports is positively associated with cognitive function for families receiving Part C early intervention, at 16 months (P = .05), 24 months (P < .01), and 36 months (P = .05) postterm. CONCLUSIONS Participation in EI therapy may be associated with more optimal cognitive function trajectories. Among preterm children whose mothers have more supports, receiving therapy appears particularly beneficial.

Capturing Unmet Therapy Need Among Young Children With Developmental Delay Using National Survey Data

OBJECTIVE Estimates of unmet therapy need based on parent report overlook the unmet needs of children with developmental delay (DD) whose parents do not first recognize a need for therapy. Using national survey, data we: 1) identified children with DD who likely need physical, occupational, or speech therapy services; 2) estimated the prevalence of overall unmet therapy need; and 3) examined factors associated with unrecognized therapy need and parent-reported unmet therapy need. METHODS Criteria for DD were applied to children aged 0 to 4 years using the 2009-2010 National Survey of Children With Special Health Care Needs (NS-CSHCN). Multivariate logistic regression was used to identify factors associated with unrecognized or parent-reported unmet therapy need. RESULTS Among 5349 children with special health care needs aged 0 to 4 years, 50.2% met our inclusion criteria for DD, 21.6% had overall unmet therapy need, 15.4% had unrecognized therapy needs, and 6.2% had parent-reported unmet therapy need. The adjusted odds of unrecognized therapy need were higher among black and Hispanic children, and children from other racial or ethnic groups than among white children (adjusted odds ratio 1.78 [95% confidence interval 1.23-2.57]). The odds of parent-reported unmet therapy need were higher for children lacking special education services. CONCLUSIONS Relying on parent-reported unmet therapy need, without considering children with DD whose therapy needs go unrecognized, likely underestimates overall unmet therapy need among children with DD. Exploring the mechanisms underlying racial, ethnic, and socioeconomic disparities in overall unmet therapy need should facilitate the development of effective interventions aimed at improving therapy access for children with DD.

Predictors of receiving therapy among very low birth weight 2-year olds eligible for Part C early intervention in Wisconsin

BackgroundThe Individuals with Disabilities Education Act (Part C) authorizes states to establish systems to provide early intervention services (e.g., therapy) for children at risk, with the incentive of federal financial support. This study examines family and neighborhood characteristics associated with currently utilizing physical, occupational, or speech therapy among very low birthweight (VLBW) 2-year-old children who meet Wisconsin eligibility requirements for early intervention services (EI) due to developmental delay.MethodsThis cross-sectional analysis used data from the Newborn Lung Project, a regional cohort study of VLBW infants hospitalized in Wisconsin’s newborn intensive care units during 2003–2004. We included the 176 children who were age two at follow-up, and met Wisconsin state eligibility requirements for EI based on developmental delay. Exact logistic regression was used to describe child and neighborhood socio-demographic correlates of parent-reported receipt of therapy.ResultsAmong VLBW children with developmental delay, currently utilizing therapy was higher among children with Medicaid (aOR = 5.3, 95% CI: 1.3, 28.3) and concomitant developmental disability (aOR = 5.2, 95% CI: 2.1, 13.3) and lower for those living in a socially more disadvantaged neighborhood (aOR=0.48, 95% CI: 0.21, 0.98, per tertile).ConclusionsAmong a sample of VLBW 2-year olds with developmental delays who are EI-eligible in WI, 4 out of 5 were currently receiving therapy, per parent report. Participation in Medicaid positively influences therapy utilization. Children with developmental difficulties who live in socially disadvantaged neighborhoods are at highest risk for not receiving therapy.

Feasibility study of early intervention provider confidence following a neurobehavioural intervention for high-risk newborns

Study purpose: Early intervention (EI) can ameliorate neurobehavioural difficulties and parental psychosocial distress. Often, EI service providers are not trained to address the unique needs of the high risk parent–infant dyad. The purpose of this study was to describe provider confidence and knowledge following delivery of a neurobehavioural intervention for high-risk newborns. Methods: This feasibility study was a multi-site, randomised controlled trial of newborns referred to EI. The intervention group received weekly home visits by a service provider certified in the Newborn Behavioural Observation (NBO) – a neurobehavioural intervention. The control group received usual care. Eighteen EI providers completed the Index of Practitioner Knowledge and Skills (IPKS). Results: EI providers did not differ on socio-demographic characteristics, discipline, or experience between the intervention and usual care groups. In mixed linear regression models, the NBO group demonstrated higher confidence scores (mean difference = 2.2, 95% CI: 0.54, 3.87). Conclusion: Integrating a neurobehavioural intervention into EI service delivery may be associated with higher perceived confidence among service providers in their ability to work with high-risk newborns.

Relationship Between Neighborhood Disadvantage and Social Function of Wisconsin 2- and 3-Year-Olds Born at Very Low Birth Weight

OBJECTIVE To examine whether (1) neighborhood disadvantage is associated with social function in 2- and 3-year-olds born at very low birth weight (<1500 g) and (2) the association between social function and childs health-related quality of life (HRQoL) is moderated by neighborhood disadvantage. DESIGN Cross-sectional study using the Newborn Lung Project, a cohort of infants born at very low birth weight in 2003 and 2004 in Wisconsin. SETTING Wisconsin. PARTICIPANTS This study includes the subgroup of 626 non-Hispanic black or white infants who were followed up at ages 24 to 43 months with parent-reported health and developmental information. MAIN EXPOSURE An index of neighborhood disadvantage was derived by principal component analysis of 5 census tract variables (percentage of families in poverty, percentage of households with income higher than the state median, percentage of women with bachelors degree or more, percentage of single mothers, and percentage of mothers of young children unemployed). Children were then classified (based on index tertiles) as living in either disadvantaged, middle advantage, or advantaged neighborhoods. Childrens HRQoL was measured using the Pediatric Quality of Life Inventory. MAIN OUTCOME MEASURE Social function was measured using the Pediatric Evaluation of Disability Inventory. RESULTS Adjusting for child medical and family socioeconomic attributes, social function was lower (mean difference, -4.60; 95% confidence interval, -8.4 to -0.8) for children living in disadvantaged vs advantaged neighborhoods. We also found that the ill effects of lower HRQoL are particularly bad for children living in a disadvantaged neighborhood. CONCLUSION Children born at very low birth weight have disparities in social function at ages 2 and 3 years that are associated with both HRQoL and neighborhood characteristics.

Racial disparities in health-related quality of life in a cohort of very-low-birth-weight 2- and 3-year-olds with and without asthma

Background Children born very low birth weight (VLBW) are at risk for low health-related quality of life (HRQoL), compared with normal-birth-weight peers, and racial disparities may compound the difference. Asthma is the most pervasive health problem among VLBW children and is also more common among black than white children, partly due to unfavourable environmental exposures. This study explores racial disparities in HRQoL among VLBW children and examines whether potential disparities can be explained by asthma and neighbourhood disadvantage. Methods The study population was the Newborn Lung Project, a cohort of infants (n=660) born VLBW in 2003–2004 in Wisconsin, USA, who were followed up at age 2–3. Multilevel linear regression models were used to examine the contributions of asthma, neighbourhood disadvantage, and other child and family socio-demographic covariates, to racial disparities in HRQoL at age 2–3. A childs HRQoL was measured using the Paediatric Quality of Life Inventory 4.0. Results VLBW, black, non-Hispanic children, on average, score nearly 4 points lower (p<0.01) on HRQoL than do white, non-Hispanic children. Including asthma reduces the difference between black and white children from −3.6 (p<0.01) to 0.08 (p>0.05). The authors found no evidence that the relationship between asthma and HRQoL differs by race. The interaction between neighbourhood disadvantage and asthma is statistically significant, with further examination suggesting that racial disparities are particularly pronounced in the most advantaged neighbourhoods. Conclusion The authors found that the black disadvantage in HRQoL among 2–3-year-old VLBW children likely stems from a high prevalence of asthma. Neighbourhood attributes did not further explain the disparity, as the racial difference was particularly pronounced in advantaged neighbourhoods.