State Early Intervention Research Articles

State Coordinator Perceptions of Linkages Between Newborn Screening and Early Intervention

Early Intervention (EI) aims to lessen the effects of developmental delay by providing services to infants and young children. Newborn screening (NBS) is a public health program that identifies infants with treatable conditions, although many conditions put children at risk of developmental delay even after medical intervention. The purpose of this study is to explore the extent to which these programs coordinate to identify, refer, and qualify children for EI services after an NBS diagnosis. A survey of state EI ( n = 30) and NBS ( n = 39) program leaders (i.e., coordinators) demonstrated variability in familiarity and collaboration; however, most coordinators were willing to pursue future collaboration. We discuss the implications of the survey results and propose policy changes that would facilitate future collaboration and, ultimately, benefit children and families.

Newborn Screening Conditions: Early Intervention and Probability of Developmental Delay.

The purpose of this study is to explore which newborn screening (NBS) conditions are automatically eligible for early intervention (EI) across states and to determine the extent to which each disorder should automatically qualify for EI because of a high probability of developmental delay. We examined each state's EI eligibility policy and reviewed the literature documenting developmental outcomes for each NBS condition. Using a novel matrix, we assessed the risk of developmental delay, medical complexity, and risk of episodic decompensation, revising the matrix iteratively until reaching consensus. Three NBS conditions (biotinidase deficiency, severe combined immunodeficiency, and propionic acidemia) are presented in detail as examples. Most states (88%) had Established Conditions lists to autoqualify children to EI. The average number of NBS conditions listed was 7.8 (range 0-34). Each condition appeared on average in 11.7 Established Conditions lists (range 2-29). After the literature review and consensus process, 29 conditions were likely to meet national criteria for an Established Condition. Despite benefiting from NBS and timely treatment, many children diagnosed with NBS conditions are at risk for developmental delays and significant medical complexity. The results demonstrate a need for more clarity and guidance regarding which children should qualify for EI. We suggest that most NBS conditions should automatically qualify based on the probability of resulting in a developmental delay. These findings suggest a future opportunity for collaboration between NBS and EI programs to create a consistent set of Established Conditions, potentially expediate referrals of eligible children, and streamline children's access to EI services.

Implementing an Electronic Patient-Reported Outcome and Decision Support Tool in Early Intervention.

The aim of the study is to identify and prioritize early intervention (EI) stakeholders' perspectives of supports and barriers to implementing the Young Children's Participation and Environment Measure (YC-PEM), an electronic patient-reported outcome (e-PRO) tool, for scaling its implementation across multiple local and state EI programs. An explanatory sequential (quan > QUAL) mixed-methods study was conducted with EI families (n = 6), service coordinators (n = 9), and program leadership (n = 7). Semi-structured interviews and focus groups were used to share select quantitative pragmatic trial results (e.g., percentages for perceived helpfulness of implementation strategies) and elicit stakeholder perspectives to contextualize these results. Three study staff deductively coded transcripts to constructs in the Consolidated Framework for Implementation Research (CFIR). Data within CFIR constructs were inductively analyzed to generate themes that were rated by national early childhood advisors for their relevance to longer term implementation. All three stakeholder groups (i.e., families, service coordinators, program leadership) identified thematic supports and barriers across multiple constructs within each of four CFIR domains: (1) Six themes for "intervention characteristics," (2) Six themes for "process," (3) three themes for "inner setting," and (4) four themes for "outer setting." For example, all stakeholder groups described the value of the YC-PEM e-PRO in forging connections and eliciting meaningful information about family priorities for efficient service plan development ("intervention characteristics"). Stakeholders prioritized reaching families with diverse linguistic preferences and user navigation needs, further tailoring its interface with automated data capture and exchange processes ("process"); and fostering a positive implementation climate ("inner setting"). Service coordinators and program leadership further articulated the value of YC-PEM e-PRO results for improving EI access ("outer setting"). Results demonstrate the YC-PEM e-PRO is an evidence-based intervention that is viable for implementation. Optimizations to its interface are needed before undertaking hybrid type-2 and 3 multisite trials to test these implementation strategies across state and local EI programs with electronic data capture capabilities and diverse levels of organizational readiness and resources for implementation.

Race/ethnic inequities in conjoint monitoring and screening for U.S. children 3 and under.

Non-White children with developmental disabilities are frequently identified later than White children and therefore miss out on opportunities for early intervention (EI). Recent research indicates that conjoint monitoring and screening is more strongly associated with EI receipt than monitoring or screening alone. To determine if there are racial/ethnic inequities in the conjoint receipt of monitoring and screening. A series of survey weighted and stratified logistic regression analyses were conducted on National Surveys of Children's Health (2016-2018) data with conjoint monitoring and screening, screening alone, monitoring alone, and non-receipt as outcomes for children aged 9-23 months of age. The primary predictor was child race/ethnicity (Black, Hispanic, Other, and White). Additional co-variates included child (e.g., Age), caretaker/family (e.g., poverty level), healthcare (e.g., usual source of healthcare), state EI policies, and city metropolitan status. Bivariate analyses indicated significant variation in conjoint monitoring and screening across racial/ethnic groups and covariates. Bivariate analyses showed that Black and Hispanic children had significantly lower odds of conjoint monitoring and screening receipt than White children. Multivariate analyses showed that this relationship was better accounted by co-variates. The health service variable, usual source of healthcare, had the strongest relationship with receipt of conjoint monitoring and screening. Black and Hispanic children are less likely to receive conjoint monitoring and screening than White children. Analyses investigating the role of usual source of healthcare seem particularly promising for understanding the sources of inequities in monitoring and screening receipt.

Variations in Criteria for Eligibility Determination for Early Intervention Services with a Focus on Eligibility for Children with Neonatal Complications.

The purpose of this policy review is to describe data on eligibility determination practices for early intervention (EI) services across the United States as they particularly relate to eligibility determination for children seen in neonatal follow-up clinics. Policy information was gathered from posted information on state EI websites and confirmed through follow-up phone calls. Information collected included definition of delay, approved measures for developmental assessment, and inclusion criteria for medically at-risk status based on birth weight, prematurity, and/or neonatal abstinence syndrome/prenatal exposure. States varied widely across enrollment practices and policies. Forty percent of states defined eligibility based on percent delay (vs SD). Thirty-five states had criteria for enrollment based on birth weight and/or prematurity, and 19 states specifically allowed enrollment for an infant with neonatal abstinence syndrome. Providers working in neonatal follow-up clinics should be carefully educated about the eligibility criteria and approved tests for assessing development in the states in which they practice, recognizing that there is obvious and significant variability across states.

Preliminary Evaluation of Washington State's Early Intervention Program for First-Episode Psychosis.

Early intervention programs are designed to address the needs of youths experiencing first-episode psychosis (FEP). Washington State developed New Journeys, a network of coordinated specialty care programs for FEP. In this study, the authors have outlined components of the New Journeys model and preliminary findings since its initial implementation. Youths and young adults diagnosed as having psychosis (N=112) completed measures at and after intake on a range of mental health assessments and functional outcomes for the first 12 months of treatment. Administrative data including state-funded emergency department and psychiatric hospitalizations were assessed 24 months before and after intake. Generalized estimating equations were used to assess change over time on multiple measures of mental health status. Compared with their condition at intake, clients had significant decreases in symptoms of anxiety (β=-2.48, p<0.001), psychotic experiences (β=-3.37, p<0.05), and clinician-rated psychotic symptoms (β=-1.47, p<0.05) during treatment. Additionally, quality of life (β=-5.95, p<0.001) and school attendance (odds ratio=1.42, p<0.05) significantly improved during treatment. Administrative data indicated that postintake, clients were less likely to visit the emergency department for psychiatric reasons (β=0.22, p<0.05), utilize community psychiatric inpatient services (β=0.31, p<0.001), and utilize public assistance (β=0.71, p<0.05) compared with 24 months before intake. New Journeys clients experienced improved clinical and functional outcomes during their first year of treatment, and rates of state-funded service utilization decreased during their treatment.

Participation in Part C Early Intervention: One Key to an Earlier Diagnosis of Autism Spectrum Disorder?

To determine whether participation in a state early intervention program is associated with reduction in the age of diagnosis of autism spectrum disorder (ASD). State agency, Medicaid, and Census data were integrated for children with ASD enrolled in a Medicaid waiver between February 2007 and March 2015 (N=1613). Ordinary least squares regression was used to estimate the relationship between participation in a state early intervention program and their age of diagnosis of ASD. The model explained 34% of variation in age of diagnosis (F[17,1595]=49.20, P<.0001, adj R2=0.34). After adjustment for key variables, compared with children who did not participate in early intervention, children who did participate were diagnosed 2years earlier (β=-23.97, P<.0001). Although conducted in only 1 state, this study suggests that participation in early intervention programs may be instrumental in earlier diagnosis of ASD. These findings underscore the importance of identifying children who qualify for early intervention programs, the value of encouraging childhood professionals (eg, early care providers and educators) to refer given documented barriers to pediatrician referral, and the need for research that identifies the mechanisms by which programs may promote earlier diagnosis (eg, service coordination, parent support).

Strengths and Challenges of Service Coordination in Eight States

A survey was distributed in 8 states to learn about perceived strengths and challenges of service coordination from those working in early intervention (EI) programs under Part C of the Individuals with Disabilities Education Act. Survey responses from 769 service coordinators and other EI personnel in 8 states provide an overview of state systems and the implementation of service coordination activities within these state EI systems. Respondents suggested that service coordinators experience the following needs: (1) balancing the workload by reducing the number of families served per service coordinator and decreasing the amount of paperwork; (2) improved compensation and funding; and (3) better and more frequent training opportunities. Findings from this survey were analyzed and used by representatives from participating states to determine state and national action plans for improving the professional development and identity of service coordinators, with the goal of prioritizing support for this important part of the early childhood intervention workforce.

A State System Framework for High-Quality Early Intervention and Early Childhood Special Education

The Early Childhood Technical Assistance Center used a rigorous 2-year collaborative process to develop, test, and revise a conceptual framework for high-quality state early intervention (EI) and early childhood special education (ECSE) systems. The framework identifies six critical components of a state system and what constitutes quality in each component. This new conceptual framework addresses the critical need to articulate what constitutes quality in state EI and ECSE systems. The framework and companion self-assessment are designed for state leaders to use in their efforts to evaluate and improve state systems to implement more effective services for infants and young children with disabilities and their families. This article describes the contents of the framework and the processes used to ensure that the framework incorporated current research, was relevant to all states, and was useful for systems improvement.

Advocating for Automatic Eligibility for Early Intervention Services for Children Exposed to Lead.

Lead poisoning remains one of the most prevalent and preventable environmental health hazards affecting children. Low-level lead exposure has been shown to significantly increase the risk of learning disabilities, behavioral problems, and developmental delay. It also has substantial social implications as lead toxicity disproportionately affects children from low-income, ethnic minority households. Early Intervention (EI) is a state-based federal program (Part C of the Federal Individuals with Disabilities Education Act) created to support the development of children from birth to age 3 years who are experiencing or who are at risk for developmental delay. In 2016, an Illinois EI and Lead Workgroup was established to address the best practice of offering EI services to children who have been exposed to lead. This work serves as a template for advocates and health providers in other states to establish automatic eligibility for EI services at low levels of lead exposure, while also demonstrating the capacity to serve these children without overwhelming the state's EI system. [Pediatr Ann. 2018;47(10):e413-e418.].

State early intervention administrator perspectives of prenatal supports for families with high probability diagnoses

Early intervention (EI) for families of infants and toddlers with or at risk for developmental delays or disabilities is federally guided to begin at birth or older. With technological advances in prenatal testing, pregnant families are increasingly learning of diagnoses that result in EI eligibility once the child is born. For these families, research is needed to determine the effects of beginning EI prenatally rather than waiting until birth. In this exploratory study, the perspectives of state EI administrators were uncovered to inform the development of a prenatal intervention to undertake such research. Participants reported strong support for prenatal EI, provided recommendations for prenatal intervention design, and offered potential systems change needs. These findings will contribute to the development and testing of a prenatal intervention that makes sense to and is compatible with one critical stakeholder group—those who administer EI programs.

Early Intervention Outcomes for Toddlers With Autism Spectrum Disorder and Their Families

Autism spectrum disorder (ASD) can be diagnosed as early as 18 months of age. State Early Intervention (EI) programs under Part C of the Individuals with Disabilities Education Act (IDEA) are serving increasing numbers of children with ASD; however, little is known about outcomes of these services. This study evaluated the impact of EI for toddlers with ASD (n = 193) and other disabilities (n = 129) and their families, using measures that included federal Part C outcome indicators. Children with ASD showed reduced maladaptive behaviors and improved social and communication skills on the PDD Behavior Inventory; some also made progress on the Part C child outcome indicators. Families of children with ASD reported that EI helped them achieve many outcomes identified as important to families participating in EI. Results provide a rich description of outcomes experienced by children with ASD and their families in one of the largest EI programs in the United States. Implications for results-driven accountability and future research are discussed.

The Impact of Funding on Part C Systems: Is the Tail Wagging the Dog?

The purpose of this study was to examine the characteristics of Part C programs and how funding has impacted the quality of services for children and families given ongoing budgetary concerns. Perceptions of State Early Intervention Coordinators (EICs) regarding their state Part C systems were obtained through an online survey. Using survey research methods to collect and analyze data, two primary questions were addressed in the current study: (a) What are the general characteristics of Part C programs that may be related to fiscal issues? and (b) What is the perceived impact of funding on the quality of services for children and families? A majority of respondents indicated their state program implements a primary service provider model, relies heavily on medical funding streams such as Medicaid, and is experiencing provider shortages. In addition, respondents commented on quality, trends, and funding of their state Part C programs. The findings of this study provide insight about the general characteristics of Part C programs, along with the perceived impact of funding on Part C services at the national level for policy makers, administrators, professionals, and families.

The Role of Mentors in Early Intervention Referrals: Overlooked Views of Pediatric Residency Training Directors.

Objectives There continues to be a pressing need to increase referrals to family-centered early intervention (EI) for more eligible infants and toddlers with inadequate consideration for the role of senior, mentoring professionals. Methods To address a dearth in our understanding, a subset of Pediatric Residency Training Directors shared views on EI, referral, and relevant training efforts. Results Participating directors primarily reported limited understanding of EI. Greater knowledge of family-focused EI correlated with its perceived helpfulness (r = .420; p = .021), which positively correlated with referring a child to EI. Despite 67% of the sample viewing pediatricians as 'most important' in screenings and EI referrals, residents were perceived as only somewhat aware of EI referral and services, and only somewhat aware of differences between clinic options and Part C EI. Although nearly all respondents noted minimal EI exposure during training, only 43% felt this amount was 'inadequate/insufficient'. The sample was fairly evenly divided in being 'extremely' or 'somewhat' interested in communicating with state EI leaders. Conclusions for Practice This preliminary analysis describes perceptions among senior medical professionals who may influence referrals via mentoring, training, and interdisciplinary collaboration. Findings inform next steps in terms of research, improving education for directors and residents, and collaborative information-sharing to bolster family-centered EI referrals to improve child and family outcomes.

Early Intervention Special Instructors and Service Coordinators in One State

The success of Early Intervention (EI) programs (Part C, IDEA [Individuals with Disabilities Education Improvement Act of 2004]) for infants and toddlers with special needs (birth to 36 months) is largely influenced by the quality of direct service providers. Little is known, however, about characteristics of providers or involvement in training initiatives to inform practice. As a rare glimpse into a state's EI personnel system, the authors examined cross-sectional information from a Professional Development database in one state's home-based Part C program. Trainees (N = 425) included primarily those who were in a sole or combined position as special instructor and/or service coordinator. Key insights and needed lines of inquiry to inform national Part C professional development initiatives are discussed.

Pediatric hearing aid use: parent-reported challenges.

The aim of this study was to investigate parent-reported challenges related to hearing aid management and parental psychosocial characteristics during the first 3 years of the child's life. Using a cross-sectional survey design, surveys were distributed to parents of children with hearing loss via state Early Intervention programs in Utah and Indiana. Packets contained one family demographic form and two sets of three questionnaires to obtain responses from mothers and fathers separately: the Parent Hearing Aid Management Inventory explored parent access to information, parent confidence in performing skills, expectations, communication with the audiologist, and hearing aid use challenges. The Acceptance and Action Questionnaire measured psychological flexibility, experiential avoidance, and internal thought processes that can affect problem-solving ability and decrease an individual's ability to take value-based actions. The Patient Health Questionnaire identified symptoms of depression. Thirty-seven families completed questionnaires (35 mothers and 20 fathers). Most responses were parents of toddlers (M = 22 months) who had been wearing binaural hearing aids for an average of 15 months. Both mothers and fathers reported that even though the amount of information they received was overwhelming, most (84%) preferred to have all the information at the beginning, rather than to receive it over an extended time period. Parents reported an array of challenges related to hearing aid management, with the majority related to daily management, hearing aid use, and emotional adjustment. Sixty-six percent of parents reported an audiologist taught them how to complete a listening check using a stethoscope, however, only one-third reported doing a daily hearing aid listening check. Both mothers and fathers reported a wide range of variability in their confidence in performing activities related to hearing aid management, and most reported minimal confidence in their ability to troubleshoot hearing aid problems. More than half of the parents reported child behavior and activities, such as playing outside, as a major hearing aid use challenge. Parents reported hearing aids were worn all waking hours by 35% of children and less than 5 hr/day by 31%. Almost half of the parents (47%) did not feel that they had enough time to talk about their emotions when speaking with their audiologist(s), 69% reported the audiologist did not help them know what to expect related to emotions about their child's hearing loss, and 22% reported symptoms of depression. Parents reported an array of challenges, even after their child had been wearing hearing aids for a prolonged time, revealing critical implications for how to provide audiological care. Audiologists have an important role in partnering with parents to identify and jointly problem-solving challenges related to their child's hearing aid use. Supporting parents includes not only addressing technical aspects of hearing testing and hearing aid function but also addressing parent thoughts, feelings, and emotions.

Conceptualizing Child and Family Outcomes of Early Intervention Services for Children With ASD and Their Families

State early intervention programs (EIPs) have been encouraged to develop and implement comprehensive outcomes measurement systems. As the number of children with autism spectrum disorders (ASD) and their families receiving services in state EIPs increases, disability-specific outcomes data are needed to better understand issues of access, costs, and benefits. The New York State Early Intervention Program (NYSEIP) used concept mapping with parent and professional stakeholders to define child and family outcomes expected from early intervention services for children with ASD and their families. Stakeholders generated more than 700 statements (synthesized to 105), then individually sorted (17 parents, 39 professionals) these statements into categories. Stakeholders rated each outcome on importance (20 parents, 48 professionals) and likelihood (18 parents, 46 professionals) that EIP services will yield a positive impact. The aggregated sort data were subjected to two separate sets of multivariate statistical analyses, producing an 11-cluster map of professionals’ conceptualization and a 7-cluster map of parent/family members’ conceptualization of the outcomes. Possible explanations for the parent/professional differences are discussed. The results will be used as part of ongoing efforts to develop a comprehensive evaluation system for state Part C EIPs that is grounded in stakeholders’ perspectives on expected outcomes for children and families.

Coaching Via Telepractice

Coaching Via Telepractice

A Neurobehavioral Intervention Incorporated into a State Early Intervention Program is Associated with Higher Perceived Quality of Care Among Parents of High-Risk Newborns

The purpose of this study is to compare two models of early intervention (EI) service delivery-a neurobehavioral intervention and usual care-on parents' perceived quality of EI service delivery. Families of newborns referred to EI were randomly assigned to a neurobehavioral intervention or usual care group and followed until the infant was 12 weeks corrected gestational age. The intervention group (n = 25) received a weekly neurobehavioral intervention. The usual care group (n = 13) received standard weekly home visits. Mothers completed the Home Visiting Index (HVI) measuring the quality of EI service delivery. Mixed linear regression was used to examine group differences in quality scores. The intervention group reported higher quality of care related to facilitating optimal parent-infant social interaction (mean difference = 2.17, 95% CI: 0.41, 3.92).A neurobehavioral model of service delivery can be successfully integrated into EI programming and appears to be associated with higher parent-reported perceived quality.

Impact of Early Intervention on Expressive and Receptive Language Development Among Young Children with Permanent Hearing Loss

Along with early detection, early intervention (EI) is critical for children identified with hearing loss. Evidence indicates that many children with sensorineural hearing loss experience improved language abilities if EI services were initiated at an "early" age. The present study's objectives were to determine the impact of a state EI program on language over time of children with permanent hearing loss and evaluate the association of EI enrollment by age 6 months with early language skill development. Young children in a state EI program were included in this longitudinal study. Results indicate that children enrolled prior to age 6 months were more likely to have age-appropriate language skills at baseline than children enrolled at or after 6 months, and maintained age-appropriate skills over time. Children enrolled at or after 6 months had lower baseline skills but made significant language progress, irrespective of hearing loss severity.