Background: People with intellectual disability are generally not consulted in the development of public policies which impact on their lives. This study focuses on the development of a conceptual framework to support self-advocacy by people with intellectual disability for the inclusion of their priorities in social and health-related policy in South Africa. The study was informed by empowerment theory, with the integration of the concept of Ubuntu. Method: The study design was qualitative and was underpinned by the hermeneutic phenomenological approach. This approach allowed the researcher to understand lived experiences of the research participants in order to gain deeper insights regarding core elements of a conceptual framework for self-advocacy through interpreting their views on how they understand those experiences. Data were collected through a scoping review, semi structured interviews and focus groups. Twenty-five participants were sampled for this study; 10 participants were policy makers and service managers, five were self-advocates with intellectual disability, five supporters of people with intellectual disability and five parents/carers of people with intellectual disability. Sampling in this study was purposeful, policy makers, service providers, supporters and parents were purposefully sampled to participate in the study. Snowballing was used to identify participants with intellectual disability involved in advocacy groups in local Non-Profit Organisations. Data were analysed thematically, using ATLAS.ti. software. The framework approached guided the data analysis process. All data sources were triangulated to develop the conceptual framework for self-advocacy by people with intellectual disability. The development approaches used for three similar frameworks were considered in deriving a process to develop this study's conceptual framework. The first framework that focused on strengthening the participation of people with psychosocial disability and their caregiver's involvement in the National Institute for Mental Health England. The second framework was a self-advocacy framework by Test and colleagues, and the third was Cook's multi-cultural and social justice counselling competencies framework. Results: Data triangulation identified three core elements for self-advocacy, a) personal development, the main contention of this element being that in order for people with intellectual disability to self-advocate, self-development is essential to their participation in self-advocacy in policy processes; b) creating a supportive environment through the empowerment of people with intellectual disability – in order for people with intellectual disability to fully participate in self-advocacy they require empowerment through two main sub-elements: self-advocacy skills development and supported self-advocacy; and c) improved policy participation opportunities, this element focusing on the importance of concerted effort to ensure that there are policy participation opportunities which will permit inclusive participation of people with intellectual disability. Conclusion: A wholistic approach is needed to increase policy makers understanding of how best to empower people with intellectual disability to provide input to public policy decisions which can improve their quality of life

The Texas Statewide Youth Leadership Forum (TXYLF) provides self-advocacy training to high school youths with disabilities. TXYLF is an enhanced version of the Youth Leadership Forum (YLF) that is comprised of an initial five day training, a nine month support phase, regional YLFs, and the opportunity for participants to return to the five day training to serve as a mentor to their peers. This study’s purpose was to examine the TXYLF participants’ post-training outcomes and the relationships among advocacy involvement and adult outcomes. To achieve this purpose, former TXYLF participants were surveyed between one and six years after their participation in TXYLF. The correlational study analyzed descriptively the participants’ outcomes and inferentially, through logistic regression, the relationships among participants’ adult outcomes, self-advocacy involvement, and the various TXYLF participation components. The results demonstrated that TXYLF participants’ post-training postsecondary education attendance was higher than the national average for adults with disabilities. Participants with low incidence disabilities were involved in inclusive employment more often than the national average. A minority status increased the likelihood of involvement in secondary education advocacy, having a high incident disability increased the likelihood of post-training employment, and being under 21 years old increased the likelihood of living independently post-training, involvement in postsecondary education advocacy, and involvement in employment advocacy. Involvement in TXYLF for one full year, including involvement as a mentor, increased the likelihood of post-training employment; involvement in TXYLF’s nine month support phase and involvement as a mentor increased the likelihood of post-training postsecondary education attendance, postsecondary education advocacy, and employment advocacy. Attending a regional YLF further increased the likelihood of postsecondary education and postsecondary education advocacy. Furthermore, involvement in TXYLF as a mentor increased the likelihood of post-training employment, postsecondary education, and independent living. No significant relationships were observed for self-advocacy and adult-outcomes. Future research is needed that takes the findings of this study and establishes a causal relationship through a randomized group experimental design.

This study examined the effects of the Self-Advocacy Strategy delivered via the CD (i.e., SACD) on self-advocacy skills of fifteen middle school students with mild and moderate disabilities. A pre-/and posttest experimental design with random assignment to treatment or wait-list control groups was employed to investigate changes in student participation and level of self-determination post-intervention. The SACD instruction addressed essential self-advocacy skills, including knowledge of self and communication. Results showed significant differences in favor of the treatment group when compared with the wait-list control group concerning student participation, as measured by student responses to a set of 10 IEP related questions. In addition, generalization data indicated positive results for student participation, as measured by student use of SHARE behaviors, for the majority of students in the treatment group in informal educational meetings with their special educators. The results provide additional support for the use of SACD to teach self-advocacy and active student participation in the IEP process to middle school students with disabilities.

In this study, special needs teachers and students with reading and writing difficulties in an upper secondary school are in focus. The research questions strive to answer how special needs teachers work in upper secondary school with students with reading and writing difficulties and what special needs teachers experience when working in upper secondary school with students with reading and writing difficulties. What do students with reading and writing difficulties experience and perceive in the transition between primary school and upper secondary school, and further studies in upper secondary school? The method has been interviews with three special needs teachers and four students in upper secondary school. The conclusive results are that the special needs teachers work with students with reading and writing difficulties in their original groups, in smaller groups and individually. Their tasks also include pedagogical assessment and assistance. Their work is complex, with many corresponding colleagues. The students face countless obstacles in school every day and ask for help to understand and overcome them.

The research was carried out during a time when residential provision for people with learning difficulties in the north of Scotland was changing from being hospital based towards being community centred. The aim was to utilise an understanding of the dynamics of past provision to shed light upon present practice and planning for the future: focussing upon that form of ‘difference’ which has been given the name ‘learning difficulty’. The research utilised records, interviews, narratives and discussion groups to explore the experiences of providers of services, service users and those who were close to them. The research sought to go beyond description; to facilitate respondents in sharing their understanding of the organisation of care services and how it had an effect upon their life chances and self concept. The design of the research, which made use of multiple sources of evidence, was qualitative in its approach. It was undertaken within four ‘sites of interest’:  The archive or the historical record of provision at Lhangbyde Hospital..  Through semi structured interviews with ‘Providers’  A ‘Punters’ discussion forum located within a self advocacy group.  A set of ‘Intimate Narratives’. The method had its roots in constructivist, reflective and post modern currents of thought which confronted the difficulty inherent is making an epistemological distinction between what is out there in the world and the categories of meaning which are resident in the human mind. The goal was to produce texts which promoted dialogue rather than monologue, were evocative rather than definitive, In chapter 8 some ‘Intimate Narratives’ from the researcher’s own life experience as a father and as a facilitator and adviser within a self advocacy organisation were presented directly as stories of everyday experience. In the final two chapters of the thesis an attempt was made to synthesise the overall findings of the research, and to assess their implications for future policy and practice. In chapter 9, under the heading of ‘Reading the Chart: understanding the past and present as a foundation for future planning’ the findings from the four ‘sites of interest’ were gathered together under seven explanatory themes, with the section entitled ‘Gaining a Voice’ achieving an overall pre-eminence.. The last chapter in the thesis (Chapter 10), under the title of ‘The Future Course’ detailed a plan for change and development based on a synthesis of findings. In addition the role of future research in promoting change was examined. The thesis concluded with a ‘plain language’ summary of recommendations.

Over the past several decades the number of youth living with a chronic health condition has drastically increased. A chronic health condition can be defined as an illness that lasts three months or more that can be controlled but not cured (Centers for Disease Control and Prevention [CDC], 2010). Although there is existing literature on youth with chronic health conditions, there are very few studies that examine the levels of health literacy, resiliency and support/advocacy within this population. The current study is a secondary analysis that utilized data collected from the 37-item Youth Health Literacy and Resiliency Scale (HLRS-Y version) in order to determine if there was a relationship between different categories of chronic health conditions and reported levels of health literacy, resiliency and support/advocacy. Ages of participants were also examined to determine if there was an interaction effect. The study consisted of a 143 youth between the ages of 13- 21 years old. All participants completed the Youth Health Literacy and Resiliency Scale (Bradley-Klug, Shaffer-Hudkins, Lynn, DeLoatche, & Montgomery, 2017) and were placed into one of three categories of chronic health condition: 1) Endocrine, nutritional, and metabolic diseases, 2) Diseases of the musculoskeletal system and connective tissue, and 3) Diseases of congenital malformation, deformations, and chromosomal abnormalities. The data were analyzed to determine if there was a difference in the reported constructs of health literacy, resiliency and support/self-advocacy among the three different categories of chronic health illnesses. The results indicated that there was a significant relation between support/self-advocacy and age. As participants increased in age, they reported having lower levels of support/self-advocacy. This finding was significant regardless of the category of chronic health condition that the participants were placed in. There were no other significant findings for the other constructs. This study contributes to the literature because it is one of few to examine health literacy, resiliency and support/self-advocacy levels among youth with chronic health conditions. In addition, it is the first study aside from the pilot, to utilize the HLRS. The findings from this study can be utilized to drive support/self-advocacy interventions for youth with chronic health conditions.

Chronic health conditions in youth have increased over the last several decades. It is estimated that within the United States there are between 15% to 18% of youth who are living with a chronic health condition (Centers for Disease Control and Prevention [CDC], 2010). The CDC defines a chronic health condition as an illness that lasts for three months or longer that can be managed, but not cured (CDC, 2010). Although there is some research on youth living with chronic illnesses, there are minimal studies that assess the constructs of health literacy, resiliency, and support/advocacy within this population. The current investigation was a validity study of the Health Literacy and Resiliency Scale (HLRS). This is a newly developed 37-item measure that assesses the level of health literacy, resiliency, and support/self-advocacy among chronically ill youth (Bradley-Klug, Shaffer-Hudkins, Lynn, DeLoatche, & Montgomery, 2017). Specifically, the study correlated the construct of resiliency in the HLRS with the resiliency construct from the Child Youth and Resiliency Measure (CYRM; Ungar & Liebenberg, 2011). This measure is a 28-item measure that assesses levels of resiliency among youth and young adults. The goals for this study included: 1) determining the extent to which the results of the factor analysis from the current study are consistent with the three-factor model from the original study, 2) assessing the relationship between the HLRS and the CYRM, and 3) determining the reliability (internal consistency) of the scores of the HLRS. More importantly, since there have only been preliminary analyses conducted on the psychometric properties for the HLRS, this study was the first step towards providing validation for this measure. Participants were recruited through several methods including community-based organizations and online outlets. There were a total of 226 participants, with 54% identifying as White, 31% African American, and the remaining identifying as other. Sixty-one percent were female. The participants were English-speaking with a diagnosis of a chronic health condition given at least six months prior. Some of the conditions that were frequently identified among the sample included: diabetes, HIV, lupus, cystic fibrosis, ADHD, and asthma. Individuals were asked to complete the HLRS, CYRM, and a demographic survey online. The results indicated that the reliability of the values of the three factors in the HLRS ranged from acceptable to excellent. The results also included a correlation between the scores from the HLRS and CYRM. For the HLRS there were strong correlations between the resiliency and support/self-advocacy factors and health literacy and support/self-advocacy factors. For the CYRM, there was a strong correlation (r =.954) with the resiliency factor indicating that the resiliency factor within the HLRS aligns with the resiliency construct that is measured in the CYRM. Some items on the HLRS loaded on more than one factor indicating the need for further consideration of particular items on that scale. Overall, these data provide additional support for the HLRS scale and suggest that the scale may be a step closer to being utilized in applied settings.

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Syftet med studien är att bidra med kunskap om under vilka omständigheter elever med dövhet eller hörselnedsättning (d/hns) utövar self-advocacy i övergången från högstadiet till gymnasiet. Self-advocacy innebär att individen står upp för sina behov och påverkar sin omgivning för att få likvärdiga förutsättningar till delaktighet. Detta är en kvalitativ intervjustudie med abduktiv ansats. Resultatet bygger på intervjuer med åtta gymnasieelever med dövhet eller hörselnedsättning som går tillsammans med hörande klasskamrater. Teorier om self-advocacy och identitet används i analysen och relation och interaktion mellan olika aktörer är centrala. Resultaten visar att eleven med d/hns i en skolövergång hamnar i flera situationer där hen kan förbättra tillgängligheten i klassrummet genom att utöva self-advocacy. Exempelvis kan eleven berätta om sin d/hns, påverka mikrofonanvändande och påverka lärarens undervisning. Studien visar också att elever ibland väljer att inte stå upp för sina behov för att undvika stigmatisering. I resultatet har en modell tagits fram som lyfter in eleven i sin kontext under övergångsprocessen och modellen kan användas för att förstå det komplexa samspelet mellan elev, lärare och klasskamrater under övergången. Slutsatsen är att det kan vara krävande för eleven att återkommande förväntas stå upp för sitt behov av tillgänglig kommunikation och att omgivningens bemötande skapar eller hindrar handlingsutrymmet för self-advocacy. Lärarens relationsskapande och förståelse för sin maktposition verkar vara de mest avgörande faktorerna för utvecklandet av handlingsutrymme för elevens self-advocacy. / The purpose of this study is to contribute with knowledge about under what circumstances pupils with deafness or pupils who are hard of hearing (d/hh) practice self-advocacy during the transition from lower secondary school to upper secondary school. Self-advocacy means that the individual stands up for their needs and influences their surroundings to achieve equal conditions for participation. This is a qualitative interview study with an abductive approach. The results are based on interviews conducted with eight upper secondary d/hh pupils and attend classes with hearing classmates in mainstream school settings. Theories of self-advocacy and identity are used in the analysis, and relationships and interactions between people are central. The results show that the student with d/hh during a school transition ends up in several situations where he or she can improve accessibility in the classroom by practicing self-advocacy. For example, the student can inform their classmates and/or teacher about their d/hh, influence them to use microphones and influence the teaching. The study also shows that students sometimes choose not to stand up for their needs in order to avoid stigma. In the results, a model has been developed that highlights the student in its context during the transition process and the model can be used to understand the complexity in the interaction between student, teacher and classmates during the transition. The conclusion is that it can be demanding for the student to recurrently be expected to stand up for their need of accessible communication and that the environment's response creates or hinders the acting space for self-advocacy. The teacher's ability to build relationships and understanding of his or her position of power appears to be the most decisive factors for the development of acting space for the student's self-advocacy.

While the number of students with learning disabilities entering the postsecondary environment is rising, many of these students have not yet acquired the skills to help them request necessary academic accommodations. Students with learning disabilities need to recognize how their disability affects their academic learning, and need to have the strategies and skills known as self-advocacy, so that they can request and obtain these accommodations. Unfortunately, many of these students, particularly Latino students, have not been given the opportunity to acquire advocacy skills prior to entering the postsecondary education setting. Trainor (2005) identified that Latino male students' plans for life after high school were not reflected in their individual transition plans. While the number of Latino males graduating with college degrees is declining (Sáenz & Ponjuan, 2009), Hurtado, Sáenz, Santos, and Cabrera (2008) have identified an upward trend among Latino males' self-rated academic abilities and desire to achieve. Due to Latino males avoidance of help-seeking behaviors, even when they are aware of academic resources that are available (Cabrera, Rashwan-Soto, & Valencia, 2016), they are a population that would benefit from instruction in these skills. The purpose of this study was to examine the effects of a self-advocacy intervention on Latino male college students' abilities to request academic accommodations. Findings demonstrated a functional relationship between the self-advocacy intervention and students' abilities to request academic accommodations in a role-play situation. In addition, all students were able to fully generalize the target behaviors to the real life setting as well. Last, data obtained from social validity surveys revealed the significance of the effects of the intervention on the dependent variables.