Child social-emotional and behavioral problems and competencies contribute to changes in developmental functioning during Early Intervention.

This study examined how social-emotional and behavioral (SEB) problems and competencies contribute to changes in developmental functioning among children enrolled in Part C Early Intervention (EI), a U.S. program supporting young children with developmental delays and disabilities. The sample included 1,055 children enrolled in EI from 2011-2019 (mean age at EI entry = 17 months; 64% male; 72% marginalized racial and ethnic backgrounds). Standardized developmental assessments, drawn from administrative records, characterized developmental functioning at EI entry and exit and parents reported SEB functioning. Hierarchical regression analyses revealed that SEB problems and competencies interacted in predicting change in developmental functioning from EI entry to exit. Monitoring, identifying, and addressing SEB problems and competencies may optimize developmental outcomes for young children with developmental delays and disabilities.

Delays in autism diagnosis for U.S. Spanish-speaking families: The contribution of appointment availability.

Promoting equity in health services requires an understanding of the mechanisms that produce disparities. Utilizing a sequential, mixed-methods, explanatory study design, we analyzed child-, family-, and organizational-level factors and their association with wait times for an ASD diagnostic evaluation among 353 families scheduled for English and Spanish language appointments (27% Spanish language). A subset of parents and caregivers participated in English and Spanish language focus groups to provide their perspectives on the diagnostic process. Spanish language was associated with greater completion of, and time to evaluations than English language. The only variable found to mediate associations with time-to-evaluation was appointment availability - an organizational factor. Qualitative results elucidate potential explanations for greater Spanish language evaluation completion (e.g., fewer community-based diagnostic options). Results serve as a case study to support the utility and importance of analyzing the influence of organizational-level factors on delays and disparities for childhood health and mental health services. We discuss our findings in relation to strategies that can be widely applied to support equitable services access for childhood diagnostic and intervention services.

Parents' Concerns Are Associated with Early Intervention Evaluation and Eligibility Outcomes.

OBJECTIVE: To test the association of parents' concerns with early intervention (EI) developmental services outcomes including evaluation, eligibility, and enrollment in services. METHOD: We collected survey data on parents' concerns and EI service use data from a sample of 428 children referred to EI from 2016 to 2018 in 6 Oregon primary care clinics serving lower-income families as part of a developmental and autism spectrum disorder screening intervention. We assessed EI service use trajectories and associations of the presence of parent concern, age of child at the time of parents' concerns, number of concerns, and type of provider concern, with EI evaluation, EI eligibility, and enrollment in EI services, using bivariate testing and multivariable logistic regression. RESULTS: Only 22.9% of children referred to EI were enrolled in services 6 months later. Children whose parents had developmental and/or behavioral concerns were more likely to receive an EI evaluation and were also more likely to be eligible for services, compared with children whose parents had no concerns. There was no association between age, number of concerns, and type of concern with EI evaluation, eligibility, or services enrollment. CONCLUSION: Although only a minority of children referred to EI enrolled in services, the presence of parent concern is strongly associated with EI services evaluation and eligibility outcomes. Study results suggest that providers should assess the presence of parent concern when deciding on EI referrals and provide more support to parents who are not concerned at all.

Improving autism and developmental screening and referral in US primary care practices serving Latinos.

LAY ABSTRACT: Latino children experience delays in access to diagnosis and treatment of autism spectrum disorder. Primary care-based screening of all children for autism spectrum disorder and referring them for services may reduce racial/ethnic differences and improve care. REAL-START, a yearlong screening intervention, was effective in increasing screening for autism spectrum disorder and general developmental delays, increasing therapy referrals, and shortening time for developmental assessment in primary care clinics with Latino patients.

Unmet Need and Financial Impact Disparities for US Children with ADHD.

OBJECTIVE: The 5.1million US children with attention-deficit/hyperactivity disorder (ADHD) have pronounced needs in education, occupational and speech therapy, and medical and behavioral treatments. Given known associations of ADHD diagnosis with race/ethnicity and parent education, this study aimed to assess how measures of socioeconomic status correlate with both adverse family financial impact of ADHD and disparities in unmet treatment need for ADHD. METHODS: Secondary analysis of children ages 8 to 17years whose households participated in the 2014 National Survey of the Diagnosis and Treatment of Attention-Deficit/Hyperactivity Disorder and Tourette Syndrome. Using bivariate testing, we examined associations among measures of socioeconomic status with unmet ADHD treatment need and family financial impact. Logistic regression models estimated the odds of having unmet treatment need, adjusting for demographic factors and family financial impact. RESULTS: Among US school-aged children with a current ADHD diagnosis, 44.3% experienced an adverse family financial impact from ADHD, and 11.6% had unmet need for ADHD treatment. Children with younger age at first ADHD diagnosis were more likely to experience adverse family financial impact. Children from non-English-speaking households were less likely to report unmet need compared to those from primarily English-speaking households. The adjusted odds of unmet need were twice as great among those who reported adverse family financial impact. CONCLUSION: Deeper understanding of the influence of the household language is important in ADHD needs assessments. Considering overall family financial circumstances may also be pertinent, particularly as children age, because earlier diagnosiswas associated with adverse financial outcomes. These findings could shape future clinic policies for targeting community resources.

Disparities in Familiarity With Developmental Disabilities Among Low-Income Parents.

OBJECTIVE: Parent knowledge about developmental disabilities (DDs) may facilitate access to DD care; however, parents may vary in their knowledge and familiarity with common DDs. This study aimed to assess racial/ethnic and language differences in low-income families' familiarity, knowledge, and personal experience with DDs. METHODS: We conducted a child development survey among 539 low-income parents of young children attending visits at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) in 6 Oregon counties in 2015. Survey items assessed parent familiarity with early signs of DDs, self-reported knowledge about DDs, and personal experience with a friend or family member with a DD. Bivariable and multivariable analyses assessed differences in outcomes among non-Latino white (white), Latino English-proficient (Latino-EP), Latino limited-English-proficient (Latino-LEP), and non-Latino other race English-proficient (other race) parents. RESULTS: Overall, parent participants correctly identified 64.7% of early signs of DDs. White parents correctly identified the most early signs, even after adjustment for sociodemographic factors. Compared with white parents, Latino-LEP, Latino-EP, and other race parents were less likely to have heard of prevalent DDs, such as attention-deficit/hyperactivity disorder and autism, and less likely to have a friend or family member with a DD. CONCLUSIONS: Low-income Latino-LEP and other race parents have less familiarity or personal experience with DDs and are less aware of early signs of DDs compared to low-income white parents. Study findings suggest that interventions to reduce disparities in DD diagnosis and treatment should include increasing information transfer to parents in racial/ethnic and language minority communities.

Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample.

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.

Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers.

Variation in parental beliefs about Autism Spectrum Disorder (ASD) may impact subsequent service use profiles. This study aimed to examine (1) variation in beliefs about ASD among English language proficient White (EP-W) mothers, English language proficient Latino (EPL) mothers, and limited English language proficient Latino (LEP-L) mothers of children with ASD; (2) variation in beliefs about ASD in the context of the child's ASD severity, among EP White mothers, EP Latino others, and LEP Latino mothers; and (3) potential links between maternal beliefs about ASD and children's current ASD treatment. This multi-site study included 305 English or Spanish-speaking parents of children with ASD, ages 2-10 years, who completed a survey about their beliefs about their child's ASD, their child's ASD severity, and treatments used by their children. Results showed that mothers in the EP-W, EP-L, and LEP-L groups differed in their beliefs about viewing ASD as a mystery. Only maternal views of ASD severity in the EP-W group were linked to their beliefs about ASD. Finally, maternal beliefs about ASD having major consequences on their child's life, and ASD being a mystery were strongly associated with a child's use of ASD intervention services. These findings provide new knowledge of how maternal beliefs about ASD vary in linguistically diverse groups, how a child's ASD severity may influence such beliefs, and how maternal beliefs correlate with the amount of therapy children with ASD receive. Future research should address how these beliefs or views are formed, what factors influence them, or whether they are malleable. Understanding parents' beliefs or views of having a child with ASD can potentially help us increase use of ASD intervention services in families of children with ASD.

Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families.

OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were "stress of diagnostic process," "parent knowledge about ASD," and "understanding medical system." Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families' barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos.

Decreasing Disparities in Child Development Assessment: Identifying and Discussing Possible Delays in the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC).

OBJECTIVE: To assess how staff at the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) address potential developmental delays and parent developmental concerns in children <5 years. METHODS: A Web-based survey of Oregon WIC staff in nonadministrative roles assessed staff interactions with parents regarding concerning child development/behavior, perceptions of connectedness with local developmental resources, and knowledge of typical child development. RESULTS: Staff (N = 153) responses indicated knowledge of typical child development, frequent interactions with families about child development, and frequent noticing of developmental concerns. However, most staff reported being less than very well connected to developmental resources. Open-ended responses suggested that staff frequently make direct referrals to early intervention, public health nurses, and others who can further assess developmental concerns. CONCLUSION: Although it is outside the primary scope of their work, developmental and behavioral concerns are frequently raised and addressed by WIC staff. Findings suggest that strengthening the existing referral processes and enhancing continuity of care between WIC and developmental providers may improve child outcomes and reduce disparities.

Parent-Reported Severity and Health/Educational Services Use Among US Children with Autism: Results from a National Survey.

OBJECTIVE: Little national data exist regarding service use patterns for children with autism spectrum disorder (ASD) of varying severity. This study aimed to assess the relationship between parent-reported severity and use of educational and health care services. METHODS: Data from the 2011 Survey of Pathways to Diagnosis and Services were used to examine a nationally representative sample of 1420 US children aged 6 to 17 years with ASD, with or without developmental delay and intellectual disability. Weighted multivariable logistic regression assessed associations of parent-reported ASD severity and child sociodemographic characteristics with school-based therapy, non-school-based therapy, behavioral interventions, and specialty provider visits. RESULTS: Higher parent-reported ASD severity was associated with increased likelihood of current use of school-based therapy (adjusted odds ratio [AOR] = 4.08, 95% confidence interval =1.85-8.98), non-school-based therapy (AOR = 3.60 [1.95-6.66]), and behavioral interventions (AOR = 2.30 [1.22-4.34]), as well as regular specialty provider visits (AOR = 2.99 [1.38-6.46]). Although rates of service use were generally highest among children with severe ASD, non-school-based therapy and behavioral interventions were only used by about half of children with severe ASD, and about 1 in 4 children with mild ASD were using none of the therapies asked about. CONCLUSION: Parent-reported severity is associated with increased therapy and specialty provider service use among children with ASD. However, substantial variability exists in service use across levels of severity.

Unmet Health Services Needs Among US Children with Developmental Disabilities: Associations with Family Impact and Child Functioning.

OBJECTIVE: To determine associations of unmet needs for child or family health services with (1) adverse family financial and employment impacts and (2) child behavioral functioning problems among US children with autism spectrum disorder (ASD), developmental delay (DD), and/or intellectual disability (ID). METHOD: This was a secondary analysis of parent-reported data from the 2009 to 2010 National Survey of Children with Special Health Care Needs linked to the 2011 Survey of Pathways to Diagnosis and Services. The study sample (n = 3,518) represented an estimated 1,803,112 US children aged 6 to 17 years with current ASD, DD, and/or ID (developmental disabilities). Dependent variables included adverse family financial and employment impacts, as well as child behavioral functioning problems. The independent variables of interest were unmet need for (1) child health services and (2) family health services. Multivariable logistic regression models were fit to examine associations. RESULTS: Unmet need for child and family health services, adverse family financial and employment impacts, and child behavioral functioning problems were prevalent among US children with developmental disabilities. Unmet needs were associated with an increased likelihood of adverse family employment and financial impacts. Unmet needs were associated with an increased likelihood of child behavioral functioning problems the following year; however, this association was not statistically significant. CONCLUSION: Unmet needs are associated with adverse impacts for children with developmental disabilities and their families. Increased access to and coordination of needed health services following ASD, DD, and/or ID diagnosis may improve outcomes for children with developmental disabilities and their families.