Reflections on being a first generation self-advocate: belonging, social connections, and doing things that matter

Background Despite good policy intentions, people with intellectual disability continue to be socially excluded. Social geographers suggest the potential of self-authored spaces as catalysts for social inclusion. One such space, self-advocacy, is commonly perceived as part of a political movement for social change rather than a vehicle for social inclusion of its members. This paper investigated what involvement in self-advocacy has meant to long-term members of a self-advocacy group in Victoria, Australia. Methods In-depth interviews were conducted with 12 self-advocates about their reflections on involvement in the group. These data together with the commentary of 5 self-advocates during interviews with 18 self-advocacy supporters about their recollections of involvement in the group were transcribed and analysed thematically. Findings Through their involvement in self-advocacy, members of the group had gained a sense of belonging, social connections, and purposeful occupation, which included paid project work, lobbying, and organisational leadership and management. Conclusions This study suggests that self-advocacy groups can be places that foster social inclusion, potentially offering “membership” of an exclusive group, a wider social movement and of mainstream society.

Can international human rights law accommodate bodily diversity?

This article considers recent efforts by international bodies and advocacy groups to secure the human rights of individuals with intersex variation. Identifying that these efforts are constrained by powerful assumptions about binary sex, it argues that international rights discourse looks set to regulate intersex individuals by the same protective strategies applied to the last four decades of the women's rights movement. A frank reading of legal feminist scholarship indicates several possible risks for the nascent intersex campaign. Efforts to ensure the substantive enjoyment of rights (for all) need to move beyond the constraints of a binary system in which women and sexed/sexual minorities will always be produced as other. Having argued that human rights are not contingent on biological determinants, the right to non-discrimination on the basis of sex traits is considered.

O trabalho voluntário desenvolvido no grupo de apoio a pacientes oncológicos de Passos e região: uma análise sobre a qualificação desta ação

Pós-graduação em Serviço Social - FCHS

Household Hardships, Public Programs, and Their Associations with the Health and Development of Very Young Children: Insights from Children’s HealthWatch

America’s low-income families struggle to protect their children from multiple threats to their health and growth. Many research and advocacy groups explore the health and educational effects of food insecurity, but less is known about these effects on very young children. Children’s HealthWatch, a group of pediatric clinicians and public health researchers, has continuously collected data on the effects of food insecurity alone and in conjunction with other household hardships since 1998. The group’s peer reviewed research has shown that a number of economic risks at the household level, including food, housing and energy insecurity, tend to be correlated. These insecurities alone or in conjunction increase the risk that a young child will suffer various negative health consequences, including increases in lifetime hospitalizations, parental report of fair or poor health,1 or risk for developmental delays.2 Child food insecurity is an incremental risk indicator above and beyond the risk imposed by household-level food insecurity. The Children’sHealthwatch research also suggests public benefits programs modify some of these effects for families experiencing hardships. This empirical evidence is presented in a variety of public venues outside the usual scientific settings, such as congressional hearings, to support the needs of America’s most vulnerable population through policy change. Children’s HealthWatch research supports legislative solutions to food insecurity, including sustained funding for public programs and re-evaluation of the use of the Thrifty Food Plan as the basis of SNAP benefits calculations. Children’s HealthWatch is one of many models to support the American Academy of Pediatrics’ call to “stand up, speak up, and step up for children.”3 No isolated group or single intervention will solve child poverty or multiple hardships. However, working collaboratively each group has a role to play in supporting the health and well-being of young children and their families. 1. Cook JT, Frank DA, Berkowitz C, et al. Food insecurity is associated with adverse health outcomes among human infants and toddlers. J Nutr. 2004;134:1432-1438. 2. Rose-Jacobs R, Black MM, Casey PH, et al. Household food insecurity: associations with at-risk infant and toddler development. Pediatrics. 2008;121:65-72. 3. AAP leader says to stand up, speak up, and step up for child health [news release]. Boston, MA: American Academy of Pediatrics; October 11, 2008. http://www2.aap.org/pressroom/nce/nce08childhealth.htm. Accessed January 1, 2012.

Health care policy analysis of Medicaid's early and periodic screening, diagnosis, and treatment (EPSDT) benefit in Colorado

The purpose of this thesis is to identify "best practice" recommendations for successful implementation of the EPSDT outreach program at Memorial Health System's Hospital for Children in Colorado Springs through a policy analysis of Medicaid EPSDT services in Colorado. A successful program at Memorial will increase education and awareness of EPSDT services, enrollment, and access to and utilization of health care services for eligible children. Methodology utilized in this study included questionnaires designed for the EPSDT contract administrator and outreach coordinators/workers; analysis of current federal and state policies; and studies conducted at the federal and state level, and by various advocacy groups. The need for this analysis of EPSDT came about in part through an awareness of increasingly high numbers of children in poverty and who are uninsured. Though the percentage of children living in poverty in Colorado is slightly below the national average (see Table 2), according to data analyzed by The Annie E. Casey Foundation, the percentage of children (0-18) living in poverty in Colorado increased from 10% in 2000 to 16% in 2006, a dramatic increase of 60% surpassed by only one other state in the nation (The Annie E. Casey Foundation, 2008). By comparison, the U.S. percentage of children in poverty during the same time frame rose from 17% to 18% (The Annie E. Casey Foundation, 2008). What kind of health care services are available to this vulnerable and growing group of Coloradans, and what are the barriers that affect their enrollment in, access to and utilization of these health care services? Barriers identified included difficulty with the application process; system and process issues; a lack of providers; and a lack of awareness and knowledge of EPSDT. Fiscal restraints and legislation at the federal and state level are also barriers to increasing enrollment and access to services. Outreach services are a critical component of providing EPSDT services, and there were several recommendations regarding outreach and case management that will benefit the program in the future. Through this analysis and identification of a broad range of barriers, a clearer picture emerged of current challenges within the EPSDT program as well as a broad range of strategies and recommendations to address these challenges. Through increased education and advocacy for EPSDT and the services it encompasses; stronger collaboration and cooperation between all groups involved, including providing a Medical Home for all eligible children; and new legislation putting more money and focus on comprehensive health care for low-income uninsured children; enrollment, access to and utilization of developmentally appropriate and quality health care services can be achieved. ^

Evaluation of a solid phase microextraction method for community-based monitoring of 1,3-butadiene and benzene in Houston, Texas

The Houston region is home to arguably the largest petrochemical and refining complex anywhere. The effluent of this complex includes many potentially hazardous compounds. Study of some of these compounds has led to recognition that a number of known and probable carcinogens are at elevated levels in ambient air. Two of these, benzene and 1,3-butadiene, have been found in concentrations which may pose health risk for residents of Houston.^ Recent popular journalism and publications by local research institutions has increased the interest of the public in Houston's air quality. Much of the literature has been critical of local regulatory agencies' oversight of industrial pollution. A number of citizens in the region have begun to volunteer with air quality advocacy groups in the testing of community air. Inexpensive methods exist for monitoring of ozone, particulate matter and airborne toxic ambient concentrations. This study is an evaluation of a technique that has been successfully applied to airborne toxics.^ This technique, solid phase microextraction (SPME), has been used to measure airborne volatile organic hydrocarbons at community-level concentrations. It is has yielded accurate and rapid concentration estimates at a relatively low cost per sample. Examples of its application to measurement of airborne benzene exist in the literature. None have been found for airborne 1,3-butadiene. These compounds were selected for an evaluation of SPME as a community-deployed technique, to replicate previous application to benzene, to expand application to 1,3-butadiene and due to the salience of these compounds in this community. ^ This study demonstrates that SPME is a useful technique for quantification of 1,3-butadiene at concentrations observed in Houston. Laboratory background levels precluded recommendation of the technique for benzene. One type of SPME fiber, 85 μm Carboxen/PDMS, was found to be a sensitive sampling device for 1,3-butadiene under temperature and humidity conditions common in Houston. This study indicates that these variables affect instrument response. This suggests the necessity of calibration within specific conditions of these variables. While deployment of this technique was less expensive than other methods of quantification of 1,3-butadiene, the complexity of calibration may exclude an SPME method from broad deployment by community groups.^

Stronger Together: The Cross-Cultural Coalition to Stop a Fossil Fuel Export Terminal in the Salish Sea

Thesis (Master's)--University of Washington, 2016-06

A Qualitative Assessment of Breast Cancer Advocates in Bolivia, Colombia, Ecuador and Peru

Thesis (Master's)--University of Washington, 2016-06

Africans in Scotland: heterogeneity and sensitivities to HIV

Aim: To investigate how diversity within the African migrant population in Scotland affects their understandings of HIV and uptake of HIV testing and treatment, in order to improve HIV-related outcomes. Background: In the UK, Africans have the worst outcomes for HIV infection, primarily due to late diagnosis. Improvement requires better understanding of the barriers to healthcare engagement. This PhD study investigates how diversity among first generation African migrants in Scotland could affect engagement with general healthcare and HIV related interventions and services. Methods: I conducted qualitative research, involving participant observation at two sites (an African religious group and an asylum seeker/refugee drop-in centre) and interviews with African migrants attending these and three additional sites (two advocacy charities and a student association). Data were collected in two cities (Glasgow and Edinburgh) and two smaller towns (Paisley and Kirkcaldy). I interviewed 27 Africans, including economic migrants (n=8), students (n=9) and asylum seeker/refugees (n=10) and 14 representatives from organisations with high levels of African attendees (e.g., country associations, community organisations, advocacy groups, commercial establishments and religious based organisations). Thematic data analysis was carried out. Results: Diversity of the population and related issues of identity: Participants were highly diverse and reported considerable heterogeneity in the African diaspora in Scotland. The identity of “African” was bound with various negative stereotypes and appeals to this identity did not necessarily have relevance for participants. Nature of African affiliated organisations in Scotland: There were a wide range of organisations that advertised their remit as catering for the African diaspora. They varied in consistency and sustainability and contributed towards healthcare engagement to different degrees. Engagement with healthcare: There were multiple experiences and understandings of the healthcare system within the sample as a whole, and to an extent by migrant type. Whilst the majority reported successful and satisfactory service use, distinct barriers emerged. These included: understandings of rights and access to care based on African models of healthcare; the interplay of religious based understandings with ideas about access to healthcare; and assumptions and anxiety about the connections between visa status and health status. Knowledge of HIV and engagement with HIV related services: Participants had good knowledge about HIV, with some notable exceptions, but there was no patterning by migrant type. They had diverse views about risk of HIV infection, most of which did not align with the HIV epidemiology that identifies African migrants as an at risk group. Most of the sample did not think targeting African migrants for HIV interventions would be successful and were hostile to the proposal for various reasons, especially because they believed it would perpetuate stigma and prejudice towards the African diaspora. There were mixed experiences of HIV related services, and prompts to test for HIV had elicited a range of reactions, the majority negative. Conclusion: Diversity within the African diaspora in Scotland should be taken into account to improve the salience and relevance of future HIV interventions. Attitudes towards current HIV testing promotion suggest that a more cooperative approach could be taken with African communities to build on existing relationships of trust and understandings of HIV.

Review of the Community Residential Care Facilities Program, Department of Health and Environmental Control

This review was predicated on a credible complaint alleging substantial health and safety deficiencies in the care of a resident placed in a Community Residential Care Facility (CRCF) in Kershaw County, South Carolina. Initial investigation with subject matter experts, non-profit advocacy groups, and CRCF inspection reports revealed this single incident might be a symptom of systemic health and safety deficiencies throughout DHEC’s CRCF Program, which regulates 471 CRCFs with the approximately 17,000 vulnerable clients, primarily elderly and disabled. This review’s scope and objectives were: Assess the risk of a vulnerable population of elderly and disabled citizens residing in CRCFs living in unsatisfactory health and safety conditions; Evaluate DHEC’s CRCF Program inspection process capabilities to identify and address CRCFs with unsatisfactory health and safety living conditions; Recommend opportunities to improve the CRCF Program.

Indigenous men's support groups and social and emotional wellbeing : a meta-synthesis of the evidence

Indigenous men’s support groups are designed to empower men to take greater control and responsibility for their health and wellbeing. They provide health education sessions, counselling, men’s health clinics, diversionary programs for men facing criminal charges, cultural activities, drug- and alcohol-free social events, and advocacy for resources. Despite there being ~100 such groups across Australia, there is a dearth of literature on their strategies and outcomes. This paper is based on participatory action research involving two north Queensland groups which were the subject of a series of five ‘phased’ evaluative reports between 2002 and 2007. By applying ‘meta-ethnography’ to the five studies, we identified four themes which provide new interpretations of the data. Self-reported benefits included improved social and emotional wellbeing, modest lifestyle modifications and willingness to change current notions of ‘gendered’ roles within the home, such as sharing housework. Our qualitative research to date suggests that through promoting empowerment, wellbeing and social cohesion for men and their families, men’s support groups may be saving costs through reduced expenditure on health care, welfare, and criminal justice costs, and higher earnings. Future research needs to demonstrate this empirically.

Fathers' rights groups : demographic correlates and impact on custody policy

This article combines information from fathers' rights Web sites with demographic, historical, and other information to provide an empirically based analysis of fathers' rights advocacy in the United States. Content analysis discerns three factors that are central to the groups' rhetoric: representing domestic violence allegations as false, promoting presumptive joint custody and decreasing child support, and portraying women as perpetrators of domestic abuse. Fathers' rights organizations and themes are examined in relation to state-level demographics and custody policy. The implications of fathers' rights activism for battered women and their children are explored.

Online Customer Experience : What is the Experience and how is it Difference for Frequent and Infrequent Purchasers, Age Cohorts and Gender Groups?

What do we know? • Customer Experience is increasingly becoming the new standard for differentiation in both offline and online retailing, and offers a sustainable competitive advantage. o The economic value of a company’s offering has been observed to increase when the customer has a fulfilling shopping experience (Pine & Gilmore, 1998) o Crafting engaging and customer experience is a known method of generating loyalty, advocacy and word of mouth (Tynan & McKechnie, 2009). o A good experience can entice consumers to shop for longer and spend more (Kim, 2001). • The customer’s experience is made up of diverse elements occurring before, during and after the purchase itself. (Discussed further on page 5). It is cumulative over time and can be influenced by touch points across multiple channels. What remains unclear? • How do Coles customers respond to the elements of online customer experience? • How does the online customer experience differ for frequent and infrequent purchasers? • Do differences between genders and age cohorts for online customer experience exist?

Civil society versus nationalizing state?:Advocacy of minority rights in the post-socialist Baltic states

Strong civil society provides individuals with arenas to bring their interests to the attention of policymakers. In so doing, civil society organizations (CSOs) can support state policies, but can also criticize policies. This paper argues that most minority rights advocacy CSOs in the Baltic states have little say in the crafting of policy and are compartmentalized into the existing agendas, with only a few groups able to evaluate policies independently. It concludes that the Baltic civil society is weak because the CSOs working on minority issues ask policymakers either too much, or too little. The findings suggest that policymakers quell criticism of their work from the side of the CSOs by ignoring their activities. Alternatively, by funding the CSO that shores up the state agenda, policymakers delegate their responsibilities to civic actors, keep critical voices from public debates and claim that their policies have the full support of a vibrant civil society. This paper investigates the options available for civil society actors to relate to policymakers in a nationalizing state by drawing on the data collected in 77 semi-structured interviews with the CSOs working with Russian and Polish minorities in the Baltic states between 2006 and 2009. © 2011 Association for the Study of Nationalities.

Cervical cancer services for Indigenous Women: Advocacy, Community-Based Research and Policy Change in Australia

Collaborative research undertaken in the state of Queensland, Australia, resulted in major changes in cervical cancer screening and treatment for Indigenous women. Guided by an Indigenous statewide reference group and with an Indigenous researcher playing a lead role, qualitative data were collected using interviews, focus groups, and larger community meetings; and case studies were conducted with health workers and community members from diverse rural, remote and urban communities, to explore the different cultural and structural factors affecting understanding and awareness of cervical cancer and Indigenous women's use of and access to health services for screening, diagnosis and treatment. These data were supplemented by an analysis of clinical data and health service checklists. We discuss the methodology and summarize the key social and structural factors that discourage women from presenting for screening or returning for follow-up. These include women's misunderstanding of cervical cancer screening, fear of cancer, distrust of health services, poor recall and follow-up systems, and the economic and social burden to women presenting for treatment. We describe how the research process and subsequent activities provided Indigenous women with a vehicle for their own advocacy, resulting in important policy and program changes.