Mobile technology in inclusive research: tools of empowerment

Inclusive research is an accepted approach when conducting research about individuals with disabilities. No studies have been published to date on using mobile technology to support people with intellectual disabilities as researchers. An inclusive research team of researchers with intellectual disabilities and academic researchers used mobile technology to support research skill acquisition. They conducted 15 joint research training sessions, followed by 10 research meetings. In order to discuss the experience of using iPads to support researchers with intellectual disabilities, the authors used a multiple-case study approach. Findings included the challenges and successes of mobile technology implementation. In conclusion, the iPads enhanced participation opportunities for the researchers with intellectual disabilities not only in the research, but also in other areas of their lives. This also brought to light the vulnerability of women with intellectual disabilities and the lack of control they often experience in their lives.     

Voices of youths on engagement in community life: a theoretical framework of belonging

Little is known from the perspectives of youths with intellectual and developmental disabilities themselves about their experiences related to inclusion, engagement in community life and friendship, and their quality of life. The Voices of Youths research project used an inclusive approach to learn from youths about these experiences. Twenty-four youths (age 13–24 years) with a range of intellectual and developmental disabilities diagnostic ‘labels’ participated in three video-recorded, community-based interviews. Constructivist grounded theory data analysis revealed a theoretical framework comprising the core concept of belonging and four associated concepts: engaging with similar people, having social relationships, negotiating meaningful roles, and navigating norms and expectations – finding a good fit. The findings contribute new knowledge about the ways in which these youths experience a sense of belonging from their own perspectives and can inform development/enrichment of policies, programmes, and services for these youths.     

The use of photovoice with people with intellectual disabilities: reflections,challenges and opportunities

Photovoice is part of the growing use of participatory research approaches with people with intellectual disabilities. In this paper we explore the process, opportunities and challenges associated with the use of photovoice with people with intellectual disabilities, illustrated through a research project entitled ‘This Is Me’. Photovoice requires researchers to share power and control in the research process and to tolerate uncertainty. Large investments in time and money are also required. These challenges, however, are outweighed by the benefits of the use of photovoice with people with intellectual disabilities. Photovoice creates a space where people with intellectual disabilities can meaningfully participate and exert control in the research process, and as such is an empowering experience. As a participatory research approach, photovoice is accessible and offers the opportunity for people with intellectual disabilities to develop new skills, confidence and experience inclusiveness in their own terms.     

‘Weightless?’: disrupting relations of power in/through photographic imagery of persons with intellectual disabilities

Missing in discussions of visual representations of people with intellectual disabilities are their own perspectives. Rooted in Derrida’s concern with the ‘right of inspection’ over visual representations, participatory arts-informed methodologies were used in research with people with intellectual disabilities. They critiqued and then used Photoshop to transform public photographs of labeled people. Responding to visual constructions of labeled persons as ‘weightless’/powerless, they revealed personal experiences of being denied control over their lives and representations. Yet their critiques and transformations reveal possibilities for their re-conceptualization as powerful, subverting stereotypes of labeled people and disrupting relations of power in disability imagery.     

Recruitment and consent of adults with intellectual disabilities in a classic grounded theory research study: ethical and methodological considerations

Researchers are required to provide opportunities for people with intellectual disabilities to be included in research which affects their lives. This paper reports on one research study inclusive of 12 adults with intellectual disabilities. Ethical and methodological realities of recruiting research participants and obtaining informed consent while enlisting a classic grounded theory methodology are discussed. The findings of this paper focus on building and maintaining trusting relationships with relevant gatekeepers and engaging in reasonable accommodations to support decision-making for and with adults with intellectual disabilities. This paper contributes to an understanding of how to apply for ethical approval, negotiate access to potential participants, enlist reasonable accommodations and obtain informed consent in the context of the methodological strictures of classic grounded theory methodology. Research projects need to be carefully planned making space for the development of empathic relationships with both the potential participants and also with the structures and services supports.     

Life histories as counter-narratives against dominant and negative stereotypes about people with intellectual disabilities

The history of intellectual disabilities is largely a story of discrimination and social exclusion portraying people with intellectual disability as abnormal and inferior. This article describes a particular methodological approach to inclusive life history research with a small group of women with intellectual disabilities in Iceland. The article documents how, through a four-year collaborative research process, the life histories became counter-narratives to dominant historical beliefs and stereotypes. In addition to the personal empowerment of the women and the construction of a collective memory, this project has also resulted in public sharing of their stories through speaking up and giving presentations, and thus potentially also changing the historical memory.     

Ageing Adults with Intellectual Disabilities: Self-advocates' and Family Members' Perspectives about the Future

Abstract

Although the numbers of ageing adults with intellectual disabilities are increasing, current systems are ill-prepared to meet the unique needs of this population and research is needed to direct policies and practices aimed at supporting ageing adults with intellectual disabilities. This article presents the qualitative findings of research conducted in British Columbia (BC), Canada, which explored the future perspectives of 11 ageing adults with intellectual disabilities and 11 family members. Future concerns of the adults with intellectual disabilities included concerns for their ageing parents, for their future living arrangements, and about loneliness. Family members concerns centred on ensuring the future security of their loved one with an intellectual disability, addressing legal issues and financial security, and promoting future choice and self-determination. The results point to the importance of early and intentional planning that supports and balances the needs and desires of both ageing adults with intellectual disabilities and family members.     

The power of difference in inclusive research

Inclusive research involves people with intellectual disabilities actively and strives for empowerment and normalisation. Less is written about the power dynamics in a research team consisting of researchers and people with intellectual disabilities and the possible value of such collaboration. In this auto-ethnography we reflect on these aspects and the challenges along the way. We conclude that striving for normalisation can be paralysing; ‘doing the same’ is not always possible and can be disempowering for all members of the research team. Acknowledging differences and uniqueness enriches research outcomes and makes us reflect on our own, sometimes rigid, academic frameworks.     

‘I know,I can,I will try’: youths and adults with intellectual disabilities in Sweden using information and communication technology in their everyday life

This study introduces how technology and humans are part of relationships that influence agency among people with disabilities. It aims to focus attention on the use of, and access to, information and communication technology (ICT), and agency among youths and adults with intellectual disabilities. The study draws on empirical research conducted with youths and adults with intellectual disabilities, as well as staff at a day centre. It shows that by drawing upon interests, previous experiences, and cooperating in ICT activities the participants’ agency changed. Also, it shows how disability is relational and how it can be influenced by ICT. An interdisciplinary approach is adopted to interpret the findings and to explore: How do people of different ages with intellectual disabilities experience the use of ICT in their everyday lives? Are people with intellectual disabilities able to influence their level of activity by using ICT? And if so, in what ways?     

How do adults with intellectual disabilities use Facebook?

Social networking sites have potential to support social relationships and self-determination of people with intellectual disabilities. However, to date, this issue has received little research attention. To help address this need, we conducted an online research survey to reach adults with intellectual disabilities who use Facebook and to include their voices about their online experiences, challenges, and preferences. We used mixed methods for data collection and analysis. Results from 58 respondents indicated that they use Facebook much as non-disabled users do to connect with family members and real-world friends. At the same time, the respondents reported challenges such as privacy setting and literacy demands. We discuss these findings and how to make social networking sites more accessible for users with intellectual disabilities.     

Adoption of children with developmental disabilities.

United Methodist Family Services of Virginia placed 41 developmentally disabled children in adoptive homes between August 1985 and June 1988, representing a range of chronic emotional, intellectual, and physical disabilities. This article describes the need for specialized adoption programs for children with developmental disabilities and the methods used in placing these children. The obstacles to adoption of children with developmental disabilities are also discussed.     

The Postadoption Needs of Adoptive Parents of Children With Disabilities

Adoptions of children with disabilities are considered special needs, due to the higher level of support needed pre- and postadoption by families and children for adoptions to succeed. Despite this fact, very few studies examine the specific postadoption experiences of families with children with disabilities. Using secondary analysis of a national survey of adoptive parents, as well as interviews and a focus group with adoptive parents in one state, this study examines families’ with adopted children with disabilities challenges and unmet needs after adoption, as well as the postadoption needs and experiences of adoptive families with children with developmental and intellectual disabilities and adoptive families of children with emotional, behavioral, and mental health disabilities. Findings indicate that families with children with disabilities do report higher rates of challenges and barriers to service access, and that this is particularly true in families with adopted children with emotional, behavioral, and mental health disabilities. Implications for research and practice are discussed.     

Experiences of families with relatives with intellectual and developmental disabilities in a consumer-directed support program

The current study explores the experiences of families with relatives with intellectual and developmental disabilities participating in a consumer-directed support program in the USA. The Illinois Home Based Support Services Program provides a limited budget to purchase and manage services. However, within recent years the program has faced cuts and changes. This context provided a rich environment to explore the benefits of the program, as well as oppressive forces creating barriers to the control of financial resources by individuals with disabilities and their families. Financial benefits, benefits from respite and personal assistance services and prevention of undesirable institutional placements were major themes that emerged and triangulated with previous research. The following themes emerged concerning barriers to the control of financial resources: provider and professional control, disability as a deserving group, fraud and abuse perceptions and familism. These themes appear to fit well within a social model of disability applied to the family.     

‘She will know that her mother’s doing something for her’: women with intellectual disabilities assuming the mother identity

This article explores the experiences of women with intellectual disabilities in becoming a mother. The presented findings are from a grounded theory research study with 19 women with intellectual disabilities from the Czech Republic. The findings are organised around external and internal factors affecting the women’s assumption of the mother identity, with the most prominent being poverty of the participating mothers, negative attitudes towards their motherhood, and a lack of preparation for motherhood. There is a need for systemic support for mothers with intellectual disabilities, starting in adolescence with sexual education, and continued throughout adulthood, including programmes focused on skills development.     

Discriminative Assumptions of Utilitarian Bioethics Regarding Individuals with Intellectual Disabilities

'Bioutilitarianism', which is a position presented by the well-known utilitarian philosophers Helga Kuhse, James Rachels and Peter Singer, views the potential existence of infants with intellectual disabilities as less valuable than the existence of 'normal' infants. I will argue that their arguments are based on misleading and biased information about the characteristics of individuals with intellectual disabilities and their quality of life. By ignoring the social constructionist dimension of disability the bioutilitarians make questionable moral conclusions. Also, the underlying assumption of their position is an 'intelligist' intuition, namely that intellectually 'normal' human beings are morally more valuable than human beings with intellectual disabilities. I contend that there is no reasonable basis for viewing infants with intellectual disabilities as being less entitled to life than 'normal' infants or for considering people with intellectual disabilities as less valuable than 'normal' people.     

‘I walk from trouble’: exploring safeguards with adults with intellectual disabilities – an Australian qualitative study

People living with intellectual disabilities have a right to be safe from abuse and neglect and have a right to be included in the decision-making process determining safeguards that will affect them. However, the research evidence that could underpin good professional practice in terms of co-producing safeguards against abuse and neglect directly involving people with intellectual disabilities is largely missing. This article, based on qualitative research involving semi-structured interviews conducted during the first half of 2014, seeks to strengthen this evidence base. It reports on the prevention strategies identified by 12 adults with intellectual disabilities about how to stay safe and compares these with the findings of similar research. The article suggests that a comprehensive safeguarding approach comprises both life course-focused safety training and access to assisted decision-making. The article argues that given the plethora of risk situations encountered by people living with intellectual disability, assisted decision-making should take the form of a co-creation process that is situation specific and grounded in everyday life.     

Likes,dislikes, supports and barriers: the experience of students with disabilities in university in Ireland

There are more students with disabilities going to college than ever before. It is important that colleges understand the experiences of students with disabilities when in university. This research project was carried out by 12 students with intellectual disabilities who are enrolled in an Irish university, under the guidance of their lecturers. The project looked at four research questions: (1) what do we like about going to college; (2) what do we dislike about going to college; (3) what supports do students with disabilities experience to participation in college; and (4) what barriers do students with disabilities experience to participation in college? The results show many interesting findings about what students with disabilities experience in college and this information can be used to help colleges better support students with disabilities.     

Prevalence of children with disabilities in the child welfare system and out of home placement: An examination of administrative records

This article explores the prevalence and characteristics of children with disabilities within the child welfare system using administrative data from the State of Minnesota. This study finds that more than a fifth (22%) of children with substantiated maltreatment are labeled in administrative records as having a disability, and more than one quarter of children (27.9%) over age five. The most common type of disability among children with substantiated maltreatment was emotional disturbance, while other common disabilities included intellectual and developmental disabilities and learning disabilities. Using logistic regression, this study finds that children with substantiated maltreatment with disabilities were about two times more likely to be in out of home placement than children with substantiated maltreatment without disabilities.     

Navigating the ethical maze in disability research: ethical contestations in an African context

Despite changes in how disability is viewed, ethical requirements for disability research have hardly changed. Some ethical clearance procedures, processes and practices still consider persons with disabilities as not able, creating unease among researchers and research participants with disabilities themselves. This paper considers five ethical contestations arising from research in the area of disability in an African context: positionality, vulnerability, signed consent, anonymity, and research committee composition. We argue that ethical requirements in practice are still largely based on a medical model of disability and propose that culturally sensitive social and human rights models should influence disability research ethics.     

Correlates of Voting Participation of People with Intellectual and Developmental Disabilities

ABSTRACT

People with intellectual and developmental disabilities (IDD) vote less frequently than nondisabled people and people with other disabilities. This study explores what factors facilitate and hinder people with IDD’s voting participation. To do so, 1,341 people with IDD were surveyed using the Personal Outcome Measures®. Binary logistic regressions revealed significant relationships between voting participation, and support needs, residence types, guardianship statuses, and organizational supports. Along with the right supports, attention to barriers that might exist can ensure people with IDD are able to make use of their civil rights and participate in this crucial form of civic engagement.