Barriers to referral and evaluation and corresponding navigation services for toddlers screening positive for autism spectrum disorder.

INTRODUCTION: Children from disadvantaged populations receive referrals, diagnoses, and services for autism spectrum disorder (ASD) late or not at all. We describe barriers to referral for and receipt of evaluation for ASD among young children from disadvantaged families and activities by autism family navigators (AFNs) to address these barriers. METHOD: Trained AFNs offered navigation to families of children aged 16-30 months with positive ASD screens from community health center clinics in 2015-2018. AFNs interviewed families to identify perceived barriers to care and documented system barriers and navigation activities. We coded, categorized, and described barriers and AFN activities. Case studies illustrate barriers and navigation activities. RESULTS: Of 22 participating mothers, 82% were Latinx and 64% were native Spanish-speaking; 71% had household incomes <$30,000/year and 57% had no high school diploma. Half of the families experienced five or more barriers to ASD evaluation, most commonly pragmatic barriers. Information barriers/needs were 5 times more common among Spanish-speaking than English-speaking mothers. One-fifth of families identified negative experiences or expectations of care. System barriers included incomplete screening tests, inadequate referrals, and waiting lists. AFNs implemented navigation activities, most frequently categorized as care coordination (95%), education (68%), social/emotional support (36%), family advocacy (27%), and self-advocacy coaching (23%). AFNs also trained providers and staff to improve screening and referral implementation. DISCUSSION: In this largely Latinx sample, families experienced numerous barriers to obtaining ASD evaluations for their screen-positive children, likely reflecting the complexity of negotiating both healthcare and educational systems. Trained AFNs can assist parents to overcome barriers to timely diagnosis. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Family navigation to increase evaluation for autism spectrum disorder in toddlers: Screening and Linkage to Services for Autism pragmatic randomized trial.

LAY ABSTRACT: Young children with autism spectrum disorder can benefit from early detection and intervention to moderate autism spectrum disorder's effect on their development. Routine screening with standardized instruments facilitates early identification. However, many screen-positive children do not receive referrals for evaluation, complete diagnostic evaluations, or engage in services. This is especially true for children of color and those from less educated or low-income families. The Screening and Linkage to Services for Autism trial evaluated the effect of family navigation on referral and evaluation for autism spectrum disorder in screen-positive toddlers. The trial was conducted in an urban, low-income population. It was designed to test "real-world" implementation of family navigation. We randomly assigned 275 children aged 16-30 months with an initial positive autism spectrum disorder screen to receive navigation if indicated or usual care. Navigation increased the number of at-risk toddlers who were evaluated for autism spectrum disorder. It also improved the quality of autism spectrum disorder screening in primary care clinics. However, many children failed to receive indicated referrals for evaluation. Navigation did not improve referral rates. Furthermore, nearly half of families who were potentially eligible for navigation could not be contacted. Other ways of structuring the navigation program may be necessary to improve families' access to and acceptance of navigation, especially in the setting of financial, cultural, and linguistic barriers. Our trial nevertheless showed that family navigation may be an important tool for reducing systemic inequalities in the early identification and treatment of young children with autism spectrum disorder.

Early Intervention Service Intensity and Change in Children's Functional Capabilities.

OBJECTIVE: To estimate correlates of early intervention (EI) service dosage and gains in children's functional capabilities from EI entry and discharge. DESIGN: Retrospective cohort study. SETTING: Secondary analyses of a subset of data (N=1005) collected from an EI administrative database on children discharged from a large, urban EI program between October 1, 2014 and September 30, 2016. PARTICIPANTS: Children who were EI eligible due to developmental delay, had received an EI care plan and at least 1 billable EI service, and had outcomes data at EI entry and exit (N=1005). Measured child characteristics included age (49.0% 12-24mo; n=492), sex (36.0% female; n=362), number of developmental delays (76.1% had 1 developmental delay; n=765), and number of EI services received (78.5% received multiple; n=789). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Outcomes were EI service intensity (hours per month) and change in functional capabilities as measured via the state-mandated Child Outcomes Summary (COS). Adjusted quantile median regression estimated EI intensity. Adjusted linear regression estimated change in function for social-emotional, cognitive, and adaptive domains of the COS. Measures of children's developmental delay severity, age at EI entry, race and ethnicity, sex, and language. RESULTS: Children older than 24 months old experienced significantly higher EI service intensity (b=0.40; 95% confidence interval, 0.18-0.63). Child age and EI service intensity were significantly linked to gains in social and cognitive COS score changes from EI entry to exit. CONCLUSIONS: Older children receive a higher intensity of EI services. EI service intensity and age were linked with positive changes in functional gains.

Community engagement to pilot electronic patient-reported outcomes (e-PROs) in early intervention: Lessons learned.

BACKGROUND: Electronic data capture is essential to advancing family-centered coordinated care in early intervention (EI). The purpose of this paper is to report on EI service coordinator response to piloting an electronic parent-reported outcome (e-PRO) assessment as part of their routine workflow, including lessons learned that may inform future phases of e-PRO implementation. METHODS: This second pilot study involved families enrolled in a large EI program (n=1040 families) in concert with their implementation of a statewide quality improvement initiative for care plan development and outcomes reporting. A total of 22 EI service coordinators and supervisors were engaged in three phases: initial e-PRO intervention, peer mentor enhancement, and standard recruitment protocol. RESULTS: Implementation of the e-PRO intervention and peer mentoring enhancement yielded low enrollment rates over the first six months (n=17). A standard recruitment protocol has resulted in enrollment growth (n=83) towards the targeted enrollment rate (n=832). CONCLUSIONS: This study reports on early insights for building and sustaining a productive academic-community partnership for e-PRO implementation to support family-centered coordinated care. Lessons learned from this academic-community partnership with respect to strategies for enhancing community significance, collaboration, return, and control are discussed as they inform further development of this intervention prior to scale-up.