Self-advocates and professionals in the field agree on the critical importance of providing self-advocacy and leadership training to youth with disabilities. Youth Leadership Forum (YLF) programs have been developed and implemented nationwide to provide a training venue for youth with disabilities to gain self-advocacy and leadership skills. The problem is the lack of empirical evidence validating the effectiveness of self-advocacy training provided through the YLF training format. The purpose of this study was to evaluate the effects of the Texas Statewide Youth Leadership Forum (TXYLF) summer training event on the self-advocacy abilities of high school students with disabilities, and to examine the interaction effect of disability type and gender on the improvement of self-advocacy abilities. To accomplish this purpose, a Non-Equivalent Groups Design (NEGD) was selected and used. The target population for this study was high school youth with disabilities in the state of Texas. The final sample included 68 youth. The TXYLF Pre/Post Questionnaire was the instrument used to measure the participants? self-advocacy abilities. The pretest was administered the week prior to the training event. The posttest was administered to the treatment group immediately following the training event and to the control group in the two weeks following the training event. Descriptive and inferential analyses were conducted to answer the primary and the exploratory questions. The inferential analyses included an ANCOVA and two factorial ANOVAS. Results indicated that the training had a positive effect on the selfadvocacy abilities of the participants. The results of the ANOVAs indicated (a) type of disability did not interact with treatment to affect the self-advocacy abilities of these participants, and (b) gender did not interact with treatment to affect the self-advocacy abilities of these participants. A descriptive and inferential post hoc examination of the treatment group data yielded an interaction by treatment effect for disability type indicating the treatment was more effective for participants with Developmental Disabilities. Future research studies should focus on replication of the current study results and examination of the long term effects of the self-advocacy training for youth with disabilities. In designing these studies, group designs should be considered and used.

In 2006, I began working collaboratively with People First members to use video as a means of telling experience-based stories. Although, I found little information that would help prepare me to work collaboratively with people who have been labeled with an intellectual disability. I was acquainted with participatory approaches to making video and with inclusive research methods with people with learning disabilities. After working for over two years and facing a variety of hurdles and barriers, The Freedom Tour documentary was released in DVD in 2008, and a year later, short video stories were published on the Internet as part of the Label Free Zone web-based project. After having worked intensely and with great urgency to “get these stories out,” I felt the need to pause. To reflect upon my experiences and to ask questions about the work I was doing, I chose to write stories adopting an auto-ethnographic approach. Experimenting with auto-ethnography as a method of inquiry and storytelling as a form of representation, gave me the opportunity to experience a process I had encouraged so many others to do: telling experience-based stories. I hope this study will increase our knowledge and understanding of collaborative video storytelling projects involving people who have been labelled. I also hope that by delving into and speaking from my experiences as filmmaker/facilitator, sibling and now auto-ethnographer I have contributed, if ever so slightly, to shifting our thinking about intellectual disability from a deficit perspective to an assumption of competence. / May 2013

Supporting individuals to live their best lives is the purpose of Southern Alberta Community Living Association. This thesis describes the inquiry that was designed to gather information about how the association could assist employees to enact this mission more fully. Employees were found to be dedicated, having important ideas about how the organization could assist them. This thesis reviews literature regarding the concept of best life as considered from a quality of life perspective, along with factors related to change in complex and dynamic organizations. Differing ways of viewing best life both by employees and through the literature, suggest that a shared understanding of the mission may benefit the organization, as well as strategies to strengthen and support communications and relationships. Further consideration of the concept of best life, or quality of life may be relevant to other agencies and the broader field of support for persons with developmental disabilities.

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In 2006, I began working collaboratively with People First members to use video as a means of telling experience-based stories. Although, I found little information that would help prepare me to work collaboratively with people who have been labeled with an intellectual disability. I was acquainted with participatory approaches to making video and with inclusive research methods with people with learning disabilities. After working for over two years and facing a variety of hurdles and barriers, The Freedom Tour documentary was released in DVD in 2008, and a year later, short video stories were published on the Internet as part of the Label Free Zone web-based project. After having worked intensely and with great urgency to “get these stories out,” I felt the need to pause. To reflect upon my experiences and to ask questions about the work I was doing, I chose to write stories adopting an auto-ethnographic approach. Experimenting with auto-ethnography as a method of inquiry and storytelling as a form of representation, gave me the opportunity to experience a process I had encouraged so many others to do: telling experience-based stories. I hope this study will increase our knowledge and understanding of collaborative video storytelling projects involving people who have been labelled. I also hope that by delving into and speaking from my experiences as filmmaker/facilitator, sibling and now auto-ethnographer I have contributed, if ever so slightly, to shifting our thinking about intellectual disability from a deficit perspective to an assumption of competence.

Aims: The aims of this thesis were twofold. First, to review the literature on parental locus of control and its role in psychological outcomes for parents who have a child with an intellectual disability (ID). Second, a research study aimed to explore levels of parental subjective wellbeing in a specific group of these parents: those who have a child with profound and multiple intellectual disabilities (PMID). More specifically, whether two different types of parental cognition, parental locus of control and recognition of positive gains of having a child with PMID, were predictive of parental subjective wellbeing. Method: A systematic review of the literature was conducted to address the first aim. For the research study, a single sample of parents and family caregivers (n=101) completed three quantitative self-report questionnaires as part of a within-participant, cross-sectional survey design. These included the Positive Gain Scale, a modified version of the Parental Locus of Control Scale, and the Warwick-Edinburgh Mental Wellbeing Scale . Results: The systematic review highlighted the influence of parental locus of control and other parental cognitions on parent and family psychological outcomes. The research study revealed that parental subjective wellbeing in this group of parents (N= 101) was lower than in the general population. Multiple regression analysis revealed that parental locus of control significantly predicted parental subjective wellbeing (β= -.279, t(2,99)= 9.419, p= .005), accounting for around 8% of the variance in WEMWBS scores, R2= .081, F(2,99)= 5.474, p= .006. Conclusions and implications: Although the systematic review and the research study highlighted the importance of parental locus of control for parents of children with ID, the results of the study suggest that other factors are also involved in influencing subjective wellbeing of parents of children with PMID. They also indicate a potential role for psychological intervention for parents and families with a focus on adjusting beliefs and expectations and promoting an internal parental locus of control. However, further research exploring the emotions and experiences of this group of parents is needed.

Aims There is an increasing focus on factors associated with resilience in parents of children with disabilities. Two such resilience factors are hope and locus of control. This thesis aimed to review the existing literature on hope and its relationship to psychological outcomes, in parents of children who have a disability. A research study aimed to explore relationships between two resilience factors, hope and locus of control, and their links with knowledge of behavioural principles and challenging behaviour. Methods To address the first aim, a systematic review of the literature was conducted for hope (operationalised using Snyder’s model of hope). Nine online databases were systematically searched using a set of pre-defined criteria. Eligible papers were rated for quality using an established tool (SIGN, 2008) adapted for this review. Secondly, a cross-sectional research study sampled mothers of children with an intellectual disability (N=32) who completed four self-report measures online: State Hope for the Child Scale (based on the State Hope Scale), Parental Locus of Control Scale (child control and parental control subscales), Behavior Problems Inventory for Individuals with Intellectual Disabilities – Short Form, and the Knowledge of Behavioural Principles Questionnaire (KBPQ), which was developed for the study. Results The systematic review identified 11 papers; three were rated as good quality, seven rated as fair quality and one rated as poor. Studies included participants whose children had a range of disabilities. Participants in the following groups were overrepresented: white, middle to high socio-economic status mothers, educated to college or graduate degree level and who self-selected to participate. For all studies, mean hope was higher than the median value for each scale used, suggesting the presence of hope in most parents. Hope was positively associated with a range of variables, such as, quality of life, and negatively associated others, including stress. There were differences in the interactions between hope components of agency and pathways, and psychological variables. There were also differences between how maternal and paternal hope related to psychological variables. The characteristics of those recruited to the research study mirrored those found in previous research. The majority of participants were married/cohabiting mothers, living in areas of higher socio-economic status, and caring for a child with a moderate or severe ID. In addition, there was a higher incidence of children with autism spectrum disorder in this sample. Mothers reported feeling hopeful, although they experienced a range of challenging behaviours (mean 14.6 behaviours per child). Due to poor psychometric properties of the KBPQ, data was not included in the analysis; however, some areas of strength and weakness in knowledge were evident. Correlational analysis showed that higher levels of resilience factors were associated with lower levels of self-injurious and aggressive/destructive behaviour. Stereotyped behaviour was not associated with either hope or locus of control. In contrast to previous research, higher hope was associated with a more external locus of control for the child control subscale. Conclusions and implications Hope is an established resilience factor in the general population. Findings from both the systematic review and research study suggest that hope is present in parents and caregivers of children with a disability. The systematic review demonstrated consistent adaptive relationships between hope and psychological variables. This highlights hope’s role as a resilience factor in parents of children with a disability. The research study added to the literature on how maternal hope and locus of control inter-relate in this population. Generalisability of study results was limited by sample size, population characteristics and by scales used. However, overall findings suggest that it would be beneficial to consider resilience factors when planning and evaluating interventions and research. Furthermore, examining specific aetiologies of disability, such as ASD, might also clarify whether these affect the relationships between hope and other psychological variables.

Overweight and obesity in patients with intellectual and developmental disabilities (IDD) are at epidemic levels in the United States. The problem identified for this DNP project is the incidence of overweight and obesity in IDD. The framework used involved the quality model for improvement. For this DNP project a new program called the Daily-Enhanced Physical Activities Program (DEPA) was developed to promote weight loss, reduce sedentary activities, and optimal body mass index (BMI) for IDD patients. Local experts consisting of two registered nurses, two physical therapists, and one direct support personnel working with IDD patients were recruited. Each expert reviewed the newly developed DEPA program using a 10 question, 4-point Likert type scale survey. Results of expert surveys showed expert agreement that daily physical activity is necessary for IDD patients to reduce the risk for other chronic disease related to sedentary lifestyle. Furthermore, all experts 'agreed' that a disability should not prevent a person from engaging in activity to enhance the quality of life. Finally, all experts indicated that the selected population would take advantage of the DEPA project. Social change occurs when IDD patients are engaged with a structured DEPA project to possibly reduce obesity, increase activity and improve BMI.

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