2009 RTOI Projects RTOI Publications
Partnering with People with Developmental Disabilities to Address Violence
Rosemary Hughes, PhD, University of Montana Rural Institute
People with developmental disabilities (DD) are among those most likely to experience interpersonal violence (IPV) and its adverse consequences. People with DD experience typical forms of IPV, as well as disability-specific IPV, such as destruction of medical equipment or communication devices and medication manipulation (Powers, et al.,2008). IPV by personal care assistants and service providers is a unique problem as well (Sobsey and Doe, 1991). Findings show that IPV negatively impacts the abilities of women and men with DD to work, live independently, and maintain their health. However, only a few studies have investigated the specific associations of disability, health and interpersonal IPV (e.g., Hughes, et al., 2001; Hughes, et al., 2006). To advance our understanding of the associations among IPV, health and disability, the proposed project will use a Community Based Participatory Research (CBPR) approach and rigorous methods to achieve the following specific aims: 1) To demonstrate and evaluate ways that people with DD can be included at all levels in violence research (design, implementation, analysis and interpretation, and dissemination); 2) To develop, adapt and pilot test assessment measures, recruitment procedures, consent materials, and study protocols that can be safely and validly used with adults with DD; 3) To identify the physical and mental health outcomes of IPV against people with DD; 4) To assess the extent to which disability characteristics, secondary conditions, and contextual factors increase risk for IPV; 5) To assess the association between IPV and decrement of disability and development of secondary conditions.
Addressing Health Disparities at the Intersection of Race, Ethnicity, & Disability
Willi Horner-Johnson, PhD, Oregon Institute on Disability and Development
Health disparities between people of traditionally underserved racial and ethnic groups and White non-Hispanics have been well-documented. There is some evidence that these disparities are even greater among individuals who also have disabilities. Yet, little work has been done to explicitly examine the junction of race, ethnicity and disability in health care and health promotion efforts. Addressing Health Disparities at the Intersection of Race, Ethnicity and Disability (Project Intersect) will address this gap by studying how disability, combined with race and ethnicity, relates to health care access and quality and the availability of health promotion programs. Our long-term goal is to reduce disparities experienced by adults from underserved racial and ethnic groups with physical, sensory, and/or intellectual disabilities in the United States. The project has four specific aims:
1. Identify current efforts to reduce racial and ethnic disparities in health care and health promotion and determine to what extent adults with disabilities are included in these efforts.
2. Examine quantitative evidence of disparities in health care access and quality related to the combination of race and ethnicity and the presence and characteristics of disability.
3. Identify existing information and generate new knowledge on barriers to health care experienced by members of underserved racial and ethnic groups with disabilities.
4. Develop and disseminate recommendations on ways to improve access to and quality of health care and health promotion efforts for people with disabilities in underserved racial and ethnic groups.
The project will use a mixed-methods approach which includes a census and analysis of ongoing federal, state, and foundation-funded efforts to reduce racial and ethnic disparities; secondary analysis of populationbased survey data; a review of existing literature on barriers to health care; focus group research with adults with disabilities from underserved racial and ethnic groups; and a national summit to present and discuss project findings and recommendations.
Project Conectar: Building Capacity in a Community to Learn the Signs Act Early
Bobbie Vaughn, PhD, Florida Center for Inclusive Communities
This RTOI aims to reduce disparities in early identification of autism and other developmental disabilities (DD) and to increase access to services in a largely Hispanic commumity (i.e., Little Havana) in Miami, FL. The PI's of Project Conectar: Building the Capacity of a Community to Learn the Signs. Act Early, will implement a health communication model paired with cultural competence to address the disparities in identification of autism and DD in this Hispanic community. Outcome and process evaluation data will assess the utilization of the model and steps toward outcomes of early identification and subsequent access to services. The model developed by Project Conectar will provide other communities with an exemplar of an approach that might be used to ensure the early identification of young children with autism within Hispanic and other diverse communities. We will partner with Connect Familias in Little Havana to a) plan and develop strategies through collaborators and advisory council, b) develop and pretest concepts, messages, and materials through focus groups to modify and extend "Learn the Signs", c) to implement through natural helpers and community health workers with modified arterials to help families understand their child's development, and d) assess effectiveness through outcome and process evaluation. We expect to double from Year 1 to Year 2 the number of families enrolled who will be seeking help for their child.
School Age Outcomes of Children With Hearing Loss
Betty Vohr, MD, Paul V. Sherlock Center on Disabilities
The goal of this project is to prospectively examine the language, communication, behavior, adaptive skills, hearing status, literacy and school resources received at 6 years in a cohort of ealy identified children with all degrees of hearing loss compared to typically hearing children who have been followed since their newborn screen. There is increasing evidence that all degress of hearing loss may negatively impact on outcomes at school age. We idetified beneficial effects in this cohort of early enrollment in EI on language outcomes at 12-16m and 18-24m. Maternal stress at 18-24m correlated negatively with decreased positive regard, decreased availability, decreased enjoyment, decreased sensitivity, and decreased verbal involvement. Multivariate analyses revealed both child factors (stay in the NICU and HL versus typical hearing) and maternal stress, intrusiveness and control directiveness were associated with fewer words produced whereas enhanced maternal atmosphere and quality of control directiveness were associated with increased words produced. At 18-24 months, children with HL has more internalizing and withdrawn behavior compared to hearing children. In addition, fewer words produced correlated with increased anxious/depressed, withrdawn, and internalizing behavior on the Child Behavior Checklist. The specific aims at 6 years are: 1. to assess at school age receptive and expressive language, literacy, behaviro and adaptive skills of children with hearing loss and typically hearing children, 2. to evaluate the effects of maternal factors (stress, SES, support and resources at 6y) and child factors (degree of HL, entry to Early Intervention, IEP services, and co-morbidities) on child outcomes. The 3 primary hypotheses are: 1. Very early enrollment in EI will continue to have beneficial effects on language outcomes for children with HL. 2. Children with moderate to profound HL will receive more IEP services and have lower language skills and literacy compared to children with mild/minimal HL and typical hearing. 3. Modeling will identify continued effects of both maternal and child characteristics on language, behavior and literacy. Information gained from this study will provide a greater undertanding of family and child nees for IFSP and IEP planning.
Prevalence of the Fragile X Premutation
Marsha Seltzer, PhD, Waisman Center
Fragile X syndrome (FXS) is the most common inherited form of intellectual disability (ID). Virtually all males with FXS have significant ID with variable physical manifestations, whereas females tend to be more mildly affected. FXS is caused by an expansion of a trinucleotide (CGG) repeat in the 5' untranslated region of the fragile X mental retardation 1 gene (FMR1). In individuals with FXS, there are over 200 CGG repeats, compared to the 5 to 54 repeats present in normal individuals. The focus of this project is on the prevalence of the premutation, which is characterized by between 55 and 200 CGG repeats of this gene. The specific aims of the proposed research are: 1) to estimate the prevalence of the premutation of FMR1 using the Wisconsin Longitudinal Study (WLS) cohort; 2) to describe the natural history of the premutation of men and women during adulthood and into old age (from age 18 through 70) with respect to family background, academic achievement, IQ, marital history, fertility and childbearing patterns, menopause, occupational stability, depression and anxiety, health and physical symptoms, and cognition.; 3) to compare men and women with the premutation with a closely matched comparison group of WLS unaffected agepeers. Because of the small size of the sample with the premutation, this will be an exploratory aim.
Addressing Disparities in LTSAE: Reaching Families at Risk for Child Maltreatment
Daniel Crimmins, PhD, Georgia State University
This project will assess the impact of the Learn the Signs. Act Early. (LTSAE) awareness education conducted by home visitation staff working with families in the child wefare system (CWS). Home visitation staff trained in the SafeCare model, an evidence-based parent education program that seeks to directly reduce family risk factors associated with child maltreatment. Research shows that children referred to the CWS are at high risk of experiencing developmental delays. Families will be randomized to receive the usual SafeCare home visitation program; SafeCare with a LTSAE educationap component for parents; or SafeCare with the LTSAE component, followed by structured problem-solving to help parents develop a plan for contacting their children's health care provider to address delays in achiveing development milesones indentified by the LTSAE materials. It is expected that in th CWS population, 1) large number of children requiring follow-up will be identified, 2) that follow-up rates will start low but increase over time due to continued support for follow-up by the home visitor, and 3) that families that use structured problem-solving approaches to develop a plan will have higher rates of follow-up than families that do not do so. Rates of parental recognition of problems and rates of follow-up for identified issues for each group will be compared. Specific outcomes that will be measured in the trial include parent awareness of child development issues, rates of identification of potential developmental delays, rates of follow-up of the potential delays, perceptions of SafeCare and SafeCare home visitors. The overarching goal of this project is to address disparities in the early identification of developmental delays among children at risk for maltreatment. The long-term goal of this research is to demonstrate an effective approach to ensuring developmental awareness and follow-up of children in the CWS using home visitation workers. Early identification of delays and early intervention services are critical to optimizing health and developmental outcomes for children.
Parents as Detailers to Increase Primary Care Provider Referrals for Early Intervention
Daniel Crimmins, PhD, Georgia State University
The goal of this project is to demonstrate that parents of children with developmental disabilities can serve as "detailers" for the Learn the Signs. Act Early. campaign, distributing materials and information, and thereby increasing referral rates for possible developmental delay by primary care providers (PCPs). Parents will be equipped to segment Atlanta pediatric practices according to their current approaches to screening and referral of children in order to tailor interventions to their needs. The long-term objectives for this project include increasing the early identification of developmental delays, increasing physician referrals to early intervention services, and ultimately improving the lives of children with developmental disabilities and their families. We believe that this project will provide the experience and data to serve as the basis for a demonstration project on a larger scale. The information we generate about pediatric practices in metro-Atlanta and rural areas, feedback on materials and approaches, and data on parents' experiences with contacting pediatric offices and conducting visits will be essential for developing a model for physician education and outreach on a critically important topic.
AUCD has completed the 2009 Research Topic of Interest (RTOI) competition.
Questions regarding the 2009 RTOIs or the 2010 RTOI process should be directed to Adriane Griffen.