LEND Cohort 1 Fellows’ Projects

January 2009 through December 2009

Fetch, Meredith: Audiological Assessment of Children with Autism Spectrum Disorders

Abstract: Children with developmental disabilities, such as those with Autism Spectrum Disorders (ASDs), have many characteristics and auditory issues that make audiological testing very challenging. Testing this population of children is a critical step in the intervention and diagnostic process because they are often believed to have behavioral or hearing problems when ASD or another developmental disability may be the actual diagnosis. This project compiled information from pediatric audiologists regarding the challenges they have experienced and their recommendations to other audiologists and parents on how to obtain reliable results from children with ASDs and other developmental disabilities most effectively. The research findings and responses from the Connecticut audiologists were comparable to one another and provided many recommendations on how to prepare a child prior to testing and at the time of the evaluation, in addition to best testing methods to acquire adequate and reliable information about the child's hearing function. Understanding the status of a child's hearing is important to all individuals working with the child during the intervention process because it will structure many things planned out on their individualized education plan (IEP). For example, schools must know which listening systems are needed and which accommodations the child should have. Knowing how the child is hearing and processing speech will allow for easier and more effective planning of the child's intervention.

Gagne, Kaitlyn: Parent Satisfaction with Early Intervention Services by Language Spoken in the Home

Abstract: Purpose: The Latino population is the fastest growing population in the United States. However, Latino children ages birth to five are the most underserved ethnic population in the country in terms of prekindergarten, childcare and early intervention services, with access to and use of these programs lower than in any other racial or ethnic group. This study analyzed the satisfaction levels of families in Connecticut’s Birth to Three program to explore the potential differences between Spanish-speaking and English-speaking families and to identify potential links to the low enrollment rates. The Spring 2009 Connecticut Birth to Three Family Survey was analyzed to compare the satisfaction rates of English and Spanish-speaking parents, using both descriptive and nonparametric statistical analysis. The descriptive analysis revealed a relatively high satisfaction rate for parents who completed the survey in both groups. The statistical analysis identified a significant difference in satisfaction between the Spanish and English-speaking parents for four (of 44) questions, with higher satisfaction reported by Spanish-speaking parents. These four areas regarded receiving information about normal development and about whom to call if dissatisfied, choices about services, and being asked if the services were meeting family needs. This study did not reveal any clear links between the low enrollment rates of Latino children and parent satisfaction with services. However, there are several variables that were not considered and confounding factors that may have affected the results. Future research should explore causative factors for this under representation and identify how to better serve this population.

Hayden, Emily: Out and About: A Community Recreation Model for Young Adults with Developmental Disabilities: A Pilot Project

Abstract: When youth with developmental disabilities are still eligible for public education services through their local schools most of their recreational and social activities are tied to school. After high school, unless they know how to use and benefit from community recreational and leisure opportunities on their own or without the assistance of their friends and family, their social network may crumble and they may find themselves isolated (Delaware Valley, 2009). Planning for new recreational, cultural and social outlets is essential to enable these young adults to continue being an active part of their communities. Historically, young adults with developmental disabilities who want to participate in recreational services must choose from limited options available in their communities, namely, they must fit the programs rather than having unique opportunities created for them (Cipriano, 1995). This presentation describes a unique person centered recreational program that was created specifically for a group of 15 adolescents and young adults with developmental disabilities, some of whom are recent high school graduates and some of whom are in their final years of special education. The model includes four major components. These are: (1) soliciting the participants’ personal choices and leisure/recreation preferences, (2) creating a menu of community choices based on these identified preferences and then having the participants select the ones of most interest, (3) implementing at least one of these leisure/recreational opportunities per month, and (4) maintaining these opportunities through various forms of fund raising.

Hehl, Jennifer: Patients with Autism Spectrum Disorder: A Descriptive Phenomenological Study of Their Surgical Experiences

Abstract: This study is a descriptive phenomenological study of the experiences of patients with ASD and their families when interacting with an acute care hospital for surgery. The purpose of the study is to fill a perceived gap of knowledge for perioperative nurses when planning the surgical care of persons with ASD. It is hoped that this study will inform nurses of the surgical experiences of persons with ASD to highlight their issues and concerns. Descriptive research is essential when a phenomenon has not been studied yet, to guide practitioners and researchers in future work. The rich descriptions will be presented to help the audience ‘walk a mile in the shoes’ of the surgical patients with ASD. Participants will be recruited from multiple websites and networks of persons with ASD and online family support. All data will be collected via email interviews. Eligible participants will be the adult caregivers of persons with ASD, or adults with ASD who have had surgery and who have access to the internet and email. The research statement that will guide the correspondence is, ‘Please tell me about your experiences when having surgery. Please include interactions with the hospital or your surgeon that happened before the day of surgery, the day of surgery and the after-surgical care.'

Kelleher, Susan M.: Autism and Hyperacusis (Sensitivity to Sounds)

Abstract: The objective of this study was to the collect information about hyperacusis, its occurrence in children with autism and the current methods of treatment.

Loria, Ashley: Parent Perspectives on Their Children with Autism

Abstract: Research has shown that children with autism may benefit from being included in a general education classroom with typically developing peers. This study sought to determine which types of settings children with Autism Spectrum Disorders (ASD) are typically taught in, and to what extent the parents are satisfied with their child’s educational setting. Surveys were distributed to a group of parents, which examined their level of satisfaction with their child’s educational setting. Seven parents of children with ASD returned the survey; six children had autism and one had Pervasive Developmental Disorder- Not Otherwise Specified. Data were collected through an email, which contained a link to an online survey. The trends in the preliminary data revealed that the parents of children with autism and PDD-NOS who spent the majority of their school day in a self-contained classroom or one-on-one with an adult were less satisfied with their educational environment. Parents’ satisfaction improved when the child spent the majority of their day in an inclusive setting with their typical peers. These conclusions can be useful when considering inclusion of children with autism and PDD-NOS. If parents are more satisfied when their child is placed in an inclusive setting, this indicates that this educational setting promotes a beneficial environment for these children. The data collected is preliminary, and raises questions that can be addressed in future research. Parent’s opinions should be incorporated when placing a child in an educational setting.

Miller-Kuhaneck, Heather: Siblings of Children with ASDs in Connecticut

Abstract: Children with autism demonstrate particular patterns of social interaction, communication, behavior, and play skills. One common characteristic is an insistence on routine and predictability. The need for routine is often evident in the play of children with autism which may consist of repetitive behaviors lacking imagination and creativity. The play deficits of children with autism may leave siblings unsure of how to engage their siblings in play activities and thus they may have unmet needs regarding learning to play with their siblings with an ASD.This project gathered information from local families regarding perceived programming needs in the area of sibling play and interaction. While there are nationally organized programs for siblings of children with disabilities that focus on peer support and education through recreation, there is a lack of programming specifically for siblings of children with an ASD. These siblings may have different issues than siblings of children with other disabilities. A literature review revealed a complexity within sibling relationships and a variability of coping and suggested a qualitative approach to data collection to examine the varied experiences sufficiently. In addition, literature suggesting a discrepancy between what parents and children may report in terms of sibling relationships indicated that interviews should be completed with both parents and siblings of the children with an ASD. In all, fourteen individuals were interviewed about sibling play in their families. Knowledge gained from these interviews will inform future discussions regarding potential program development for families in the state of CT.

Nalepa, Agnes: Health Care for Individuals with Disabilities

Abstract: The objective of this study was to obtain and explore how much education health care providers obtain upon employment and continuing education.

O’Mahoney, Kathleen: Disability and Family-centered Care Curriculum of LEND-Participating Graduate Schools at the University of Connecticut

Abstract: This final project consisted of researching and analyzing disability and family-centered content in the standards for accreditation and the courses of those programs listed in the Graduate Catalog for a number of the Graduate programs at the University of Connecticut. The programs were selected because of their involvement in the LEND grant at the University of Connecticut Health Center’s A.J. Pappanikou Center for Excellence in Developmental Disabilities. The graduate level standards for each program, both master’s and doctoral where applicable, and the courses offered in each of those programs, were analyzed for mention of the following words: ‘disability,’ ‘developmental disability,’ ‘handicapped,’ ‘special needs,’ or ‘family-centered,’ as well as for specific disabilities. The 2009-2010 Graduate Catalog had course titles and descriptions that were reviewed, and the standards from each program that were reviewed were only those from certified accrediting bodies. The requirements for each program were noted. The programs that had the disability key words present in the standards all had at least one course on disabilities listed in the graduate catalog for their program. With the exception of one, those programs that did not mention any of the disability key words in their standards also did not list any disability courses in the graduate catalog for their program. The percentage of courses containing disabilities per program was calculated. The ‘Family ‘centered’ key word was not observed in any of the programs’ standards or in any of the program courses in the Graduate Catalog.