Much emphasis has been placed on early detection of developmental delays and disabilities due to increased knowledge regarding the important role early intervention can play in a young child's development. The American Academy of Pediatrics (AAP) published policy statements in 2001 and 2006 describing the role of pediatricians in the process of developmental surveillance and screenings. This study seeks to determine the current developmental surveillance and screening practices of pediatricians and family physicians in the southern nine counties of Illinois. Specifically the study aims at looking at to what extent pediatricians/family physicians use standardized developmental screening tools to screen infants and toddlers as described in the AAP recommendations. What methods are pediatricians currently utilizing to screen infants and toddlers (standardized instruments, self made checklists, clinical judgment) In addition, this study looks at to what extent do pediatricians/family physicians follow the AAP's recommendation process for referrals of infants and toddlers identified as at-risk for developmental delays?

The purpose of this paper is to examine social systems theory as it relates to the inclusion of disenfranchised populations into the larger social system by enabling these populations to receive education and resources which can allow them to develop skills needed to achieve inclusion. Specifically this study is concerned with using elements of social systems theory to develop a sexual education program for a population identified with an Intellectually/ Developmentally Disability (ID/DD). In order to do this, it is necessary to work within the family or caregiver system where these individuals live and function. Caregivers must be helped to recognize the potential for inclusion in this area of life for this population, and educational tools appropriate to the developmental and cognitive levels of the participants must be made available. Acknowledgment of the individual's role within the system and understanding of the individual's experience of that systems interaction with the environment and with other systems is primary in developing effective programming which can increase the quality of the participants' interactions and relationships, making life a more productive and more satisfying experience.

For this research, semi-structured qualitative interviews were conducted with primary caregivers that have adult children with disabilities. These interviews explored the lived experience of caregiving of primary caregivers. Three main themes surrounding care were found, all falling within the larger context of tensions in care. The first theme captures tensions in policy that promote empowerment but also produce disablement. Second, tensions exist between service agencies and lived experience of care. Lastly, tensions exist between were between the burdens and rewards of caregiving. It is these three themes and tensions that impact caregiving experiences at a personal level with the participants. These tensions are explored at a qualitative level and are illuminated by the lived experiences of the participants. Through this research the complex and understudied world of disability and care are explored. This research has implications for future policy development of support services for families that have an adult child with developmental disabilities. Further, these tensions illuminate the complex world of caregiving for those with disabilities in a way that examines life course impacts on caregivers themselves. / Thesis / Master of Arts (MA)

Reading skills are critically important for a child’s development and continued growth in school. The home and school literacy experiences of children who have developmental disabilities have been found to be qualitatively different from the experiences of their same age peers without disabilities. In addition to access to instruction, a number of intrinsic factors including cognitive ability, receptive language and expressive speech skills have been suggested as factors that may place children with developmental disabilities at a greater risk for limited development of reading skills. Currently, little is understood about how children who have developmental disabilities and may have limitations in productive speech learn to read. This study identifies key intrinsic and extrinsic factors that are related to the development of phonological awareness in 42 children between 4 years and 5 years 9 months of age with developmental disabilities and a range of speech abilities. Aims of this project were to 1- systematically assess children’s intrinsic factors of speech ability, receptive and expressive language and vocabulary, cognitive skills and phonological awareness to determine key intrinsic factors related to phonological awareness and 2- describe the extrinsic factors of home literacy experience and preschool literacy instruction provided to children. Children were found to have frequent and positive home literacy experiences. No significant correlations between speech ability and frequency of shared reading experiences were found. Parents reported low levels of preschool literacy instruction. Significant correlations were found between instruction in decoding and word recognition and children’s sound-symbol awareness. Correlations were found between the use of technology and media and Augmentative and Alternative Communication (AAC) and children’s speech ability. Positive, significant relationships were found between phonological awareness and all direct assessment measures of developmental skill, speech ability and early reading skills but were not found between phonological awareness and home or school literacy experiences. Speech ability did not predict a significant amount of variance in phonological awareness skill beyond what would be expected by cognitive development, receptive language and orthographic knowledge. This study provides important implications for practitioners and researchers alike concerning the factors related to early reading development in children with limited speech ability.

Quality of life is a phrase that most people are familiar with, regardless of whether or not they can define it. Much research has been conducted across disciplines in an effort to explain the construct. As human service programs become more focused on outcomes, there is greater interest in measuring quality of life as an indicator of service quality and success. This study was designed to test whether or not quality of life differences exist between adults with developmental disabilities and the general population at an item, scale, and composite level. The quality of life dimensions that were tested included items related to well-being, community participation, access to services and human rights, and choice and decision-making. Differences were found in well-being and decision-making. Differences were also present in certain access items. The two groups also differed in overall quality of life with those with developmental disabilities having lower quality of life. A logistic regression model that was comprised of the life dimensions differentiated between the two groups with over 90% accuracy. Overall results indicate that adults with developmental disabilities are at a significant disadvantage with regard to quality of life in comparison with the general population.

Preference is commonly incorporated into educational interventions for individuals with developmental disabilities. Preference assessments have a solid research base indicating that they are more reliable tools for finding preference than the subjective opinions of parents and teachers. As evidence-based practices have been emphasized, the preference assessment has been a regular component of interventions and instructional programs for the population. Along with the utility, research regarding the assessment and relevant variables has also increased. However, many questions still exist and wait for more inquiry. One of the practical issues is the occurrence of challenging behaviors of individuals with disabilities during preference assessments. Highly occurring challenging behavior during an assessment may interrupt the procedure and lead to inaccurate results about the individual’s preference. That may ultimately affect the effectiveness of the intervention or instructional program. Using a procedure that does not evoke challenging behavior is necessary for accurate results as well as ethically responsible. Therefore this study examined the relation between functions of challenging behavior and three commonly used preference assessment procedures: Paired-Stimulus (PS), Multiple-Stimulus without Replacement (MSWO), and Free-Operant (FO). This study had two phases: Functional analyses and preference assessments. First, functional analyses were conducted to identify the function of challenging behaviors. The participants were nine children with developmental disabilities whose functional analysis results indicated their challenging behavior was maintained by access to tangible items (5), attention (2), and escape (2) reinforcers. After identifying the behaviors’ functions, preference assessments were implemented to compare the rates of the challenging behaviors. Each preference assessment format was conducted 5 times, in a random order for each participant. The results of the study demonstrate that the occurrence of challenging behavior with different functions was different depending on procedure formats. This suggests that there would be a relation between functions of challenging behavior and preference assessment formats. In other words, depending on the function of challenging behavior, the assessment procedure may act as a trigger evoking the challenging behavior. This study discussed practical guidance to prevent challenging behavior during preference assessments. / text

Self-determination is a much researched topic in transition literature. However, very little is known about self-determination experiences in transition-age young adults who are racially/ethnically diverse with developmental disabilities as relates to their home/personal life and school/work life. It is recognized that differences do exist of self-determination by these individuals in various settings but the specifics remain unknown. / text

No previous studies have examined how those with Autism Spectrum Disorder (ASD) communicate or cope with symptoms of acute physical illness. Effective management of illness is important as it is related to an individual’s overall health and has implications for the spread of disease. I hypothesized that youth with and without ASD would demonstrate important differences in illness management. In the present study, I investigated parent- and self-perceptions of illness communication and coping behaviour in high-functioning (HF) youth with and without ASD. Participants were 24 youth with HFASD and 24 age-, sex- and IQ-matched controls, aged 9 to 17 years, and one of their parents. Data related to participants’ social communication, daily living skills, illness experience, and illness knowledge were also collected. Parent and self-reports of illness communication and coping behaviour were assessed using vignettes depicting characters with various ailments. Based on parent-reports, typically developing youth communicate illness using direct means (e.g., verbal reports) and utilize active (e.g., intervention-seeking) coping behaviours to manage ailments. In contrast, youth with HFASD were reported to use direct communication less frequently than controls. As such, parents of those with HFASD reported that they rely on observations of their children’s sick behaviour to determine when they are ill more frequently than parents in the control group. Youth in the control group were also reported to use more passive (e.g., emotionality, self-isolation, passive adherence) means of coping when ill with acute physical ailments, when compared to parent reports. Self-reports indicated that youth with HFASD perceived themselves as having significantly more “typical” illness behaviours (e.g., utilization of direct communication and active coping strategies) than their parents reported, whereas youth and parent reports in the control group were more consistent overall. Results of this study will provide important information for parents and practitioners that may subsequently be used to help children with ASD develop strategies for communicating about and coping with illness effectively. A model, emphasizing skill deficits that may prevent youth with HFASD from managing illness effectively, was also developed. Limited insight in the domain of health behaviour may be a particularly important focus for future interventions.

The current document is a paper-based thesis investigating the lived experiences of parents raising children with Fetal Alcohol Spectrum Disorder (FASD) in Ontario, Canada. Historically, researchers have approached the exploration of families with the notion that families of children with a developmental disability would present with a pathological profile. However, a recent paradigm shift has transitioned the focus from deficit-based outcomes to those that highlight positive outcomes. Therefore, the first paper included is a qualitative analysis of factors that facilitate family adaptation. Interpretative phenomenological analysis (IPA) was used to analyze semi-structured interviews with parents of children with FASD. Parents utilize a number of coping strategies, supports, and transformational outcomes that enable them to adapt to raising their child with FASD. The second paper included is also a qualitative analysis examining demands that hinder family adaptation. Parents discussed five stressors that hinder successful family adaptation. Recommendations from parents of children with FASD and implications for increasing knowledge and awareness of the disability are discussed.

This study focuses on parental future planning for adults with intellectual disabilities. In recent years, the need for parents to engage in future planning for their offspring with intellectual disabilities has been increasingly emphasized. Within the literature, a number of approaches to future planning have been identified, including both formalized approaches (i.e., creating clear, explicit, and largely unchanging plans for the future of the individual with an intellectual disability) and more informal approaches (i.e., designating a person or a group of people to oversee the well-being of the individual with an intellectual disability without necessarily providing specific guidelines relating to the individual’s future care). Despite growing understanding that parents may approach developing future plans in different ways, to date, research on future planning has largely been focused on exploring formalized, concrete approaches to future planning. Using an Interpretive Description methodology, in which semi-structured interviews were conducted with 28 parents of adults with intellectual disabilities, this study sought to gain a greater understanding of parental future planning in real life practice in the province of British Columbia. Results revealed that while the parents in this study often utilized several future planning approaches -- both formal and informal -- when engaged in planning, they could be classified into two broad categories: Concrete Planners and Informal Planners. In addition, the results of this study also highlight key factors that may distinguish between parents who plan more formally and parents who plan more informally. Overall, these result highlight important avenues for future research and policy and practice; which, ultimately, may lead to important changes regarding how best to support aging parents of adult children with intellectual disabilities as they face the challenging task of planning for the post-parental care phase of their adult child’s life. / Graduate / megan.caines@gmail.com