2010 RTOI Projects RTOI Publications
Accessing Child Educational Services (ACES)
Jane Squires, PhD, University of Oregon
Accessing Child Educational Services (ACES) proposes to investigate barriers, motivators, and other factors that influence parents or caregivers to act early on concerns that child developmental milestones are not being met. Successful strategies, motivators, and facilitating factors for parents/caregivers will be identified that encourage timely and early parent action. Four primary research questions will be investigated: 1) What is the effect of the child's age at time of initial positive developmental screen on parental actions; 2) What are the characteristics of families associated with action or inaction related to acting early? 3) What are the environmental characteristics associated with action or inaction? 4) What are effective ways to support and encourage parents in information gathering and decision-making related to seeking consultation and evaluation of developmental delays? Qualitative and quantitative data will be gathered from caregivers and agency personnel working with families with young children, as well as individuals with disabilities. Recruitment of caregivers from diverse urban/rural, ethnic and socio-economic backgrounds will occur through child find settings currently used in Oregon for screening children as well as through agency-based screening and intervention/education settings (e.g., Early Intervention/Early Childhood Special Education, Head Start, primary health care, Oregon Council on Developmental Disabilities). Data collection will include surveys of caregivers and agency staff, interviews and focus groups with caregivers, agency personnel, and individuals with disabilities. The Early Intervention Program, University of Oregon Center for Excellence in Developmental Disabilities (UCEDD), will be the lead agency, led by Dr. Jane Squires, UCEDD Director and Early Intervention Professor and Dr. Debra Eisert, UCEDD Associate Director and Pediatric Psychologist.
Innovations for Electrophysiologic Assessment of Infant Hearing
Barbara Cone Wesson, PhD, University of Arizona
The long-term goal of this research is to apply knowledge of auditory system development to the clinical challenge of assessing hearing abilities in infants and young children. The translational and immediate goal of this research proposal is to develop and implement cost-effective, sensitive and specific tools for infant auditory assessment that can be used by pediatric audiologists. The specific aims of this project are: 1) To develop and implement new stimulus, signal processing and response evaluation methods for obtaining frequency-specific estimates of hearing thresholds that can be used in non-sedated infants. 2) To compare the sensitivity, specificity and the time required to complete a test using the innovative methods developed for specific aim 1, to existing technologies including a) a new technology using adaptive "Kalman" filters and in-situ bioamplifiers that are purported to allow signal extraction in high levels of electromyographic and/or electroencephalic noise. This will be a test of the Vivosonic Integrity ABR system. b) Conventional tone burst stimuli and signal processing algorithms (linear filtering, amplitude-based artifact reject, signal averaging), such as those employed by the majority of instruments designed for infant ABR assessment. We will use 3 experiments to assess the innovations in technology (Vivosonic) stimulus (rising-frequency chirp) and response (40-Hz ASSR) We will: 1) Model the response and noise parameters in adults with normal hearing and also with hearing losses simulated by using band-passed noise maskers. Adults with known hearing losses will also be recruited for the study. 2) Test normally hearing infants aged 3, 6 and 9 months using each of the three methods (Vivosonic, rising-frequency chirp and 40-Hz ASSR). 3) Test infants (ages 0-12 months) referred for diagnostic assessment (following a failed newborn hearing screening) using each of the three methods.
Health Surveillance of Adults with Intellectual Disabilities
Alixe Bonardi, OTR/L, MHA, University of Massachusetts
This study will establish a solid foundation for feasible, effective and sustainable activities that describe the health of adults with intellectual disabilities in America. It will build on significant effort to date 5 to gather and catalogue health indicators in the population of adults with ID, both to provide methodologically sound investigation of health disparities as well as to establish accurate and valid benchmarks for health improvement in this population. The University of Massachusetts's Center for Developmental Evaluation and Research (CDDDER) and the Human Services Research Institute (HSRI) will collaborate to develop foundational work to enhance health surveillance of adults with intellectual disability. Building on CDDER and HSRI's experience with health and safety risk monitoring and practical concerns related to the collection of performance indicators in the National Core Indicators Database (NCI), the project team proposes to accomplish three aims: 1) The development of consensus operational definitions based on both deductive processes and inductive processes. Project team will facilitate a national consensus panel review of both current data set definitions of ID, and develop indicators of priority variables. 2) The completion of a concise summary of national datasets that capture information about people with intellectual disability, along with critical review of their applicability for collection of health indicator data. 3) Statistical modeling and data match feasibility studies to establish recommendations for methodologies to gather data on representative samples of people with ID. The project team will be guided by a Project Advisory Group (PAG), which will be established at the outset of the grant. The advisory group will include people with intellectual disability as well as family members.
Benchmarks for Early Screening and Testing (BEST)
Jane Squires, PhD, University of Oregon
Early intervention services for infants and toddlers improve developmental, mental health, and health outcomes for young children and their families. Currently, few states track the timeliness of services that young children and their families receive nor report on the responsiveness of their systems to individual and family needs. Project BEST proposes to investigate current early intervention reporting systems and develop reasonable benchmarks that will serve as key, standard components of state early intervention systems for screening, assessment and diagnosis. Research will be conducted in three phases. First, an environmental scan of selected state data systems measuring the number of children and the timing of screening, assessment, and diagnostic phases for early intervention services will be conducted. Second, benchmark measures for reporting numbers of children and implementation timeframes will be developed. Finally, benchmarks will be pilot tested in two counties in Oregon that significantly vary in their current abilities to meet standards for identifying and serving young children.
Early Identification and Connection to Services among Low-Income, Low Literacy Urban Parents
Zolinda Stoneman, PhD, University of Georgia
Our study will focus on parents who have low literacy skills, live in poverty, and have young children (birth to four years of age). We propose to: (a) describe parents' awareness, knowledge, and behavior regarding children's development, (b) identify attitudinal and social barriers to monitoring their children's development and engaging in help seeking behavior in the presence of concerns, (c) develop strategies to facilitate their involvement in identifying children with developmental delays and connecting with appropriate early intervention services in a timely manner, (d) evaluate materials from the Learn the Signs, Act Early (LTSAE) health communication campaign, and (e) make recommendations on how to improve these materials and / or develop new materials to meet needs that we identify in this research effort. We will also recommend general strategies for how to best address the population groups' awareness, knowledge, and behaviors related to early identification and taking early action for referrals and intervention with their young children with autism and other developmental delays. The overarching framework for our research is based upon theTheory of Planned Behavior (TPB; Ajzen, 1991), a model that has been frequently adopted to evaluate attitudinal and social barriers to engaging in health promoting behavior. Our research plan features recommended principles in the development of public health campaign materials, such as those utilized by Fraze et al. (2009). First, we will engage in formative research with a well-defined target audience through a series of exploratory focus groups. Second, we will use a well-established social-cognitive model of behavior, TPB, to inform our data collection efforts with the target audience and provide a reasonable test of the utility of the theory within this context. Third, we will use information collected from both focus groups and survey methodology to design 'mocked up' revised LTSAE materials. Fourth, we will end the research project with an evaluation of the 'mocked up' LTSAE materials with the targeted audience.
Recommended Practices for Treating Individuals with Fragile X
Anne Wheeler, PhD, University of North Carolina
In 2006 the National Center on Birth Defects and Developmental Disabilities awarded a grant to investigators at RTI International to develop a data base and conduct a national survey of families of children with fragile X syndrome (FXS). The project was highly successful, enrolling more than 1000 families who completed a comprehensive survey. Nine articles based on the survey data have been published or accepted for publication in peer reviewed journals. Most (94%) survey respondents agreed to allow their names to be kept in a long-term survey research registry and to be re-contacted for future studies, making this an invaluable resource for future research. This application requests funds to continue and expand this work. Through a partnership between the Center for Development and Learning at the University of North Carolina at Chapel Hill and RTI International, the overarching goal of the project is to expand knowledge about the nature and consequences of FXS, both for affected individuals and their families, and use this information to inform clinical practice and policy development. The project will: (1) re-contact and expand the current survey sample, focusing on recruitment of families from ethnic minority groups and families of recently diagnosed children; (2) design a new survey to gather new information about individuals with FXS and their families; (3) use internet and call-center capabilities to conduct the new survey; and (4) analyze and disseminate the results of the survey.