“I’m too old to think five years ahead”. Parent carers of adult children with intellectual disabilities in Sweden

In Sweden, most adult people with intellectual disabilities live in group homes. Independent living and independence are highly valued in Swedish politics. Yet there are also parents who live with their adult ‘children’ with intellectual disabilities. This article analyses eight parents’ stories about living with their adult children with intellectual disabilities. They discuss their daily lives and future thoughts concerning their children's living situation. The analysis is conducted from a perspective in which age is seen as a social practice and power structure. The parents in this study violate several norms through their choices. Their daily lives continue to be characterized by the adult children's needs and activities. The parents are aging and the adult children get older, but household chores and responsibilities continue to be distributed in the same way. There is risk that the co-living of parents and adult children will entrench an age structure in which parents are ascribed “eternal” adulthood, never transitioning into old age, while the child remains in “eternal” adolescence.     

Facilitators and Barriers to Employment Among Veterans with Spinal Cord Injury Receiving 12 Months of Evidence-Based Supported Employment Services

Background:

Return to work is associated with positive rehabilitation outcomes for persons with spinal cord injury (SCI); however, more research is needed on vocational support for persons with disabilities seeking employment.

Objective:

The association between facilitators and barriers of employment and employment outcome was examined among Veterans with SCI who participated in an evidence-based supported employment (EBSE) program.

Methods:

Using a mixed-methods, nested case-control design, data on facilitators and barriers to employment were extracted from qualitative interviews and quantitative measures administered in person to 34 Veterans with SCI who completed 12 months of an EBSE program. Participants who did (case) and did not (control) obtain competitive employment were matched on time since SCI. Facilitators and barriers to employment were compared between the groups.

Results:

Self-report measures administered at baseline were examined; there were no statistically significant factors that predicted employment outcomes after 12 months of EBSE program participation. Qualitative interview data revealed program-specific facilitators and Veteran characteristics that were associated with employment outcomes.

Conclusions:

Qualitative data illustrate how the integration of the vocational rehabilitation specialist on the medical team is helpful for addressing identified disability-specific barriers, including practical matters such as transportation and caregiving schedules, to facilitate employment outcomes.     

De la difficulté à être reconnus « capables » et « compétents » : des adolescents et jeunes adultes désignés handicapés mentaux en quête d’autonomie

For two decades, the French legislator has been seeking to promote the autonomy of people with disabilities by enabling them, in particular, to increase their power to act on their environment through self-determination. In this respect, many of the devices they are the target of testify to this willingness to support the autonomy of persons designated as mentally disabled, traditionally defined in terms of dependence and incapacities. Based on an ethnographic survey, this contribution examines the paradoxical dynamics that run through public inclusion policy, with an emancipatory aim, within a specialized class system called ULIS. It describes the difficulty faced by a group of adolescents and young adults designated as mentally disabled, enrolled in a vocational high school, in being recognized as “capable” and being part of a process of empowerment. Analysis of the experiences of these young people shows that they face a suspicion of incompetence and a process of infantilization that is less related to their actual disabilities than to the way they are categorized, as “mentally disabled” youth.     

Employment opportunities for persons with different types of disability

The employment status of groups with different disabilities was analysed as were potentially important moderating factors (work ability, structural and individual factors). A secondary analysis was performed on 4359 respondents with disabilities from Statistics Sweden's Labour Market Investigation. The respondents were divided into six disability groups (communicative-hearing, communicative-speech-reading, communicative-vision, psychological disability, medical disability, physical disability). Logistic regression analyses showed that the probability of being employed was highest among respondents with hearing disabilities and respondents with psychological disabilities were least likely to be employed. Being a woman (very young or old) with only primary education and with partially or very impaired work ability, reduced employment opportunities. Higher education did not increase employment opportunities for respondents with impaired work ability. In summary, the type of disability is essential for employment opportunities, and differences between disability groups cannot be explained by differences in other variables. The moderating factors studied were found to be of equal importance in all groups.     

La situation socioéconomique des personnes en situation de handicap au Maroc et en Tunisie : inégalités,coût et stigmatisation

Two household surveys completed with qualitative interviews were carried out in 2013 and 2014 in Morocco and Tunisia, two countries which ratified the United Nations convention of the rights of persons with disabilities and actively engaged in innovative policies to promote those rights. The two surveys look at inequalities among persons with disabilities in terms of capabilities, i.e. real opportunities a person has to live the life she values. Based on the capability approach of Amartya Sen, analysis presented in this study show an important gap in terms of education, employment and health related quality of life – a somehow more narrow perspective on wellbeing than the one proposed by Sen, but nevertheless interesting to compare two populations – for persons with disabilities compared to the rest of the population in both countries. If the situation seems improved for the new generation compared to their parents’ generation, access to education – which is a right for children with disabilities in Morocco and Tunisia – is far from being secured in both countries. Similarly, access to employment of persons with disabilities remains uncertain, in more precarious jobs and for lower wages than the rest of the working age population. Social exclusion that persons with disabilities face – as shown in the case of education and employment – have a considerable cost in terms of health related quality of life estimated to be the equivalent of a reduction of 20 and 18 years, respectively in Morocco and Tunisia, of the average life expectancy of persons in good health and without a disability. The recent policy against discrimination and for the promotion of the rights of the persons with disabilities are going in the right direction but a strong political will is required for them to become long term. Civil society has an important role to play to keep the current momentum.     

Role of the “differently-abled” researcher: Challenges and solutions in inclusive research

This article examines the role of the “differently-abled” researcher in facilitating inclusive research with adults (age 16 and older) with intellectual disabilities living in Sami areas of Norway. Topics discussed include challenges that may arise while conducting such research due to the nature of the project (externally-funded pre-existing project), methods applied (quantitative) and people involved (some being of Sami background and some with intellectual disabilities). In this study, for example, the research sponsors had pre-determined both the topic of investigation (i.e. living conditions) and the method (i.e. by questionnaire), without first consulting people of indigenous background. I argue that, although such stipulations and the double-minority status of research participants may pose additional challenges in fully accommodating the ideals of inclusive research, it is possible and sometimes advantageous to use inclusive research designs to conduct studies involving people with intellectual disabilities. In performing such research, an important question is whether people who have experienced discrimination and stigmatisation should be forced to take on identities they are not comfortable with in order to be involved in research about themselves. The article additionally illustrates how to apply an inclusive design in quantitative research while working with pre-existing research projects.     

Understanding people's needs in a commercial public space: About accessibility and lived experience in social settings

Adapting public spaces for persons with disabilities can be both physically and socially challenging. The two pilot studies presented explore the existing physical conditions of the mall and the social experiences of the mall users as these are documented and experienced by them. The research goals include understanding the physical characteristics of the mall, how access happens, what people experience in real time when going to the mall and what this might mean in terms of issues of social construction of space and personal lived experiences. In both pilot studies, the methods included visual documentation and content analysis of the existing spaces and their design, followed by live in-mall walk-abouts with participants, during which narratives of the experiences were recorded. Researchers engaged collaboratively with participants to understand the experiences, challenges and situations they experienced. Participants include persons with reduced vision or severe vision loss and persons in motorized wheelchairs. Results reveal issues of lack of accessibility, poor contrast and issues of way-finding. Social stigmas add to mall experiences and participants nevertheless reveal the value of the social experiences despite the mall elements hampering their access.     

Creating capabilities for societal participation in times of welfare state change? Experiences of people with disabilities in Finland

Societal participation is central for disability policies throughout the world. In a Finnish setting, it is firmly anchored in the welfare state's commitment to create equal capabilities, but it is also dependent on other prerequisites, such as an inclusive labour market. However, these commitments have become both increasingly important through efforts of strengthening the rights of people with disabilities as well as increasingly challenged by crumbling growth and recurrent austerity measures in social policy. This article explores societal participation of people with disabilities in Finland in times of the recent ratification process of the UN CRPD and welfare cuts, and investigates the subjective experiences of societal participation in a changing welfare state context. The data consists of 13 individual qualitative interviews among working-age people with different kinds of disabilities. The findings highlight the importance of state commitment for creating equal capabilities for societal participation and for removing barriers standing in its way. They also suggest that this commitment is becoming both strengthened by the UN CRPD and weakened by the economic crisis and austerity measures and that this may have an undermining effect upon capabilities for persons with disabilities to participate in society.     

Situating disability. The recognition of “disabled workers” in France

This article concerns the issues surrounding the “recognition of the quality of disabled workers” in France, from both applicants’ and decision-makers’ points of view. While the latter strive to make “disabled workers” into a sub-category of disabled persons, applicants’ positions are often more ambivalent. In speaking of their experience, many of them use the notion of “situation of disability”, a term quite common in current French debates about disability that was not retained in the French law of 2005: even if they are bothered by a functional difficulty in certain professional situations, many still do not think of themselves as disabled persons. To understand these differences, we propose returning to the foundations of French employment policy in favour of disabled persons and exploring the variety of issues that dominate claims to recognition, without forgetting the essential interface role played by professionals in the field of disability. Our analysis is based on a field study on both sides of the counter at Departmental houses of people with disabilities, with people working in the institutions and those requesting recognition of the quality of disabled worker.     

Research with persons with intellectual disabilities: An inclusive adaptation of Tourangeau's model

This paper demonstrates how Tourangeau's model of survey response (Tourangeau, 1984) can be adapted to facilitate research with people with intellectual disabilities. As the focus on voice of marginalized people become increasingly important, especially when involving service outcomes and policy making, researchers in fields such as quality of life continue to seek sound research methods to present true voice of such persons. To achieve this, this paper consolidates challenges and strategies of research methods among literature and identifies additional challenges and strategies through the current study. It then describes the development of this current study, which examined the transition outcomes of youth with mild intellectual disabilities (i.e. change in status for young people after formally leaving school, from behaving primarily as students to assuming adult roles in the community). The purpose of this is to demonstrate how Tourangeau's model may be used more inclusively in conjunction with the three dimensions of Triple-I. In summary, Tourangeau's model can be a helpful tool, when used with an inclusive adaptation to facilitate many aspects of the self-reported data collecting process from the design and preparation procedures, through to the data collection. The findings lead us to look beyond the traditional research on instrumentation, which has mostly focused on the dimension of interviewee and instrument. The other two dimensions of interviewee-instrument mediated by interviewer, and interviewee-interviewer revealed in the study add value to methodological quality.     

Vocational Rehabilitation in Spinal Cord Injury: What Vocational Service Activities Are Associated with Employment Program Outcome?

Background:

Designing effective vocational programs for persons with spinal cord injury (SCI) is essential for improving return to work outcome following injury. The relationship between specific vocational services and positive employment outcome has not been empirically studied.

Objective:

To examine the association of specific vocational service activities as predictors of employment.

Method:

Secondary analysis of a randomized, controlled trial of evidence-based supported employment (EBSE) with 12-month follow-up data among 81 Veteran participants with SCI.

Results:

Primary activities recorded were vocational counseling (23.9%) and vocational case management (23.8%). As expected, job development and employment supports were the most time-consuming activities per appointment. Though the amount of time spent in weekly appointments did not differ by employment outcome, participants obtaining competitive employment averaged significantly more individual activities per appointment. Further, for these participants, job development or placement and employment follow-along or supports were more likely to occur and vocational counseling was less likely to occur. Community-based employment services, including job development or placement and employment follow-along or supports as part of a supported employment model, were associated with competitive employment outcomes. Office-based vocational counseling services, which are common to general models of vocational rehabilitation, were associated with a lack of employment.

Conclusions:

Vocational services that actively engage Veterans with SCI in job seeking and acquisition and that provide on-the-job support are more likely to lead to employment than general vocational counseling that involves only job preparation.     

When benefits become barriers. The significance of welfare services on transition into employment in Norway

Historically, many individuals with disabilities in Norway faced exclusion from participation in mainstream society. A shift in disability policy from an emphasis on segregation to integration started taking place in the late 1960s, and “full participation and equality” became the overall objective from the early 1980s. In parallel, the government has developed and implemented several welfare services and programs to enhance this integration, particularly in the labor market. Based on in-depth interviews with persons with mobility disabilities, the article addresses their experiences of transitioning into mainstream employment, supported by, and navigating through a vast array of welfare services. Born in the 1970s and early 1980s, these study participants represent so-to-speak the first generation of integrated people with disabilities. Their stories are important when exploring how and to what extent the policy of integration enhanced labor market participation. Applying a structural perspective, the article discusses why welfare service delivery processes may become barriers along the road into mainstream employment. Informed by Fraser's (2003) “perspectival dualism,” it outlines how insufficient dimensions of redistribution and recognition impede a smooth transition into working life for persons with mobility disabilities, turning welfare services and programs into barriers.     

Le concept de vulnérabilité et l’inclusion politique des personnes ayant une déficience intellectuelle

Electoral system reforms in liberal democracies have allowed people with intellectual disabilities, historically stripped of their citizenship, to exercise their political rights. Inspired by the Convention on the Rights of Persons with Disabilities, many national governments have extended the principle of the universal right to vote to persons with intellectual disabilities, despite some institutional resistance. Different approaches in ethics and political theory have offered justifications for these electoral reforms, but they are divided on the question of the skills required for the exercise of political rights and the constraints imposed by the intellectual abilities of certain people. The concept of vulnerability developed by Martha Fineman approaches the question differently by emphasizing the relational and collaborative dimensions of the citizenship institution.     

Citizenship of persons with intellectual disabilities within the frame of inclusive research: A scoping review of studies to inform future research

This scoping review aims to explore the citizenship of people with intellectual disabilities and its expression in inclusive research. The deductive lens used is the general principles embedded in Article 3 of the UN's Convention on the Rights of Persons with Disabilities. The review was conducted using the framework proposed by Arksey and O’Malley. Seven databases were searched for peer-reviewed journal articles dating from 2005 to 2019. Our key findings are: the term citizenship is seldom mentioned or explicitly discussed in the articles; the articles highlight a broad range of dimensions closely related to the exercise of citizenship. Citizenship in the articles is connected to participation, autonomy, decision-making, self-direction and inclusion in society. Articles also uncover violations of the rights and barriers to participation in the society; more attention needs to be paid to conceptualization and exploration of the citizenship of people with intellectual disabilities.Implications for further researchThe citizenship of people with intellectual disabilities needs to get more attention regarding both the understanding of the concept of citizenship and its exercise, so that people with intellectual disabilities get a real chance to become equal partners in society and research.     

Core concepts of human rights and inclusion of vulnerable groups in the United Nations Convention on the rights of persons with disabilities

The Convention on the Rights of Persons with Disabilities (UN CRPD) was adopted by the United Nations General Assembly in 2006 and entered into force on May 3rd, 2008. The UN CRPD is the first legally binding international instrument with comprehensive protection of the rights of persons with disabilities, and sets out the legal obligations on States to promote and protect the rights of persons with disabilities worldwide. EquiFrame, a novel policy analysis framework, was used to evaluate the UN CRPD in relation to its commitment to 21 predefined core concepts of human rights and inclusion of 12 Vulnerable Groups. While a number of core concepts and vulnerable groups were found to be absent in the UN CRPD, and other core concepts mentioned only in a specified capacity, the overall quality rating for the UN CRPD when interpreted within the parameters of EquiFrame's summary indices was found to be high, placing it amongst the best policy instruments assessed using the EquiFrame methodology so far. Suggestions for how shortcomings can be addressed are made.     

Out of the shadows: Violence against girls and women with disabilities in Portugal

To live a life free from abuse and violence is a fundamental human right. Yet for many girls and women with disabilities, this remains a difficult goal to achieve. This paper examines the issue of violence against girls and women with disabilities in Portugal, by addressing three key questions: what forms of violence against girls and women with disabilities are more prevalent? How significant is the issue in Portugal? How to ensure the right of girls and women with disabilities to protection against violence? Drawing from 60 semi-structured interviews with women and men with various types of disabilities, the study reveals a high prevalence of situations of abuse among girls and women with disabilities including psychological, physical, sexual, financial and social violence. Results are discussed in light of human rights principles and suggestions are made to develop a research agenda and continue exploring the topic in the near future.     

Barriers and facilitators to societal participation of people with disabilities: A scoping review of studies concerning European countries

The aim of this scoping review is to explore previous scientific studies relating to the scholarly understanding of societal participation of people with disabilities. Six relevant databases within social science were searched using societal participation of people with disabilities, or different combinations thereof, as search words. The criteria for inclusion were: working-age people with disabilities; societal participation; accounting for facilitators or/and barriers of participation; geographical focus on or link to Europe, peer-reviewed studies using quantitative or qualitative methods published in English between January 2012 and December 2013. Thirty-two studies met these inclusion criteria. Each study was analysed relating to four measures: identity of the participator group, type of participation; type of facilitators; type of barriers. The findings show that there is a dominating focus on labour market participation and that societal participation was studied mostly concerning disabled people in general instead of any specific group. The main barriers identified were related to financial factors, attitudes, health issues and unemployment. The most frequently identified facilitators were related to legislation and disability policies, as well as to support from people in close contact with disabled people, attitudes in society and employment opportunities for people with disabilities.     

Exploring the social lives of young adults with disabilities

This article explores the social lives of young adults with disabilities as they were transitioning from school to adult life. The young adults were former participants of the Access to Community Employment and Education Program (ACEE) in Halifax, Nova Scotia, Canada, a program, which focuses on the transition of young people with disabilities from school and youth to adulthood, employment, and independent living. The data in the article were drawn from a mixed method research project that explored, through a survey and follow-up focus groups and interviews, the impact of the ACEE program and the lived experiences of its alumni in the years after having completed the program. The study highlights the alumni's social lives, their leisure activities and their relationships and the different ways the participants are living their lives in the community several years after having completed the ACEE program. The data shows that the program is playing an important role in creating lasting friendships and a sense of belonging amongst its peers.     

Où sont les freins à l’emploi ? Inactivité et chômage parmi les personnes avec une déficience de survenue précoce

The under-representation of persons with disabilities in employment is documented. However, the restrictions for persons with disabilities to accessing paid work are not well known in their variations by type of impairment. Moreover, they are likely to be confused with job exits because of work-related impairments. Using the 2011 Employment Survey and its ad hoc module, this article identifies factors and processes contributing to inactivity, unemployment, or their co-presence, for people aged 15–64 living in households in metropolitan France and having an impairment that occurred before the end of their initial training. Depending on the type and degree of impairment, multifactorial disabling mechanisms occur at varying stages, drawing three “out-of-employment patterns”: inactivity for people with cognitive impairment or mild mental health impairment, unemployment for people with severe visual impairment or moderate mobility impairment, and coexistence of both for people with severe mobility impairment or severe mental health impairment. Moreover, the administrative recognitions of disabilities have nuanced effects (depending on which rights are associated) and the benefits of diplomas are heterogeneous according to the subgroups.     

Functional and environmental factors affecting work status in individuals with longstanding poliomyelitis

Introduction

Remunerative employment is a major concern of individuals with chronic disabilities, among them, those with longstanding poliomyelitis (LSP). Although LSP is not rare there are almost no data related to work participation.

Purpose

The aims of the current study were to determine the effects of a number of social and functional variables as barriers or facilitators to work participation in persons with LSP.

Patients and methods

Charts of 123 LSP patients of working age that were seen in the post-polio outpatient clinic, between the years 2000 and 2005 were reviewed for the study. Data on age, gender, family status, level of function in activities of daily living, basic, and extended (B-ADL and E-ADL), and mobility were then analyzed for correlation to the vocational status.

Results

Seventy-two people (58.5%) were employed at the time of the survey. Gender and marital status were not found to significantly differ as regard to employment. Using assistive devices for mobility or being dependent for basic ADL were associated with lower levels of employment. Driving was positively associated with the employment status of the LSP individuals.

Conclusion

Persons with LSP encounter important barriers to work participation, particularly on the International Classification of Functioning, Disability, and Health (ICF) components of activity and environment.