This paper examines the adjustments made to include people with intellectual disabilities in mainstream services. Drawing on in-depth interviews with both people with intellectual disabilities and ...mainstream service managers in four urban regions in Australia, the paper points to three modes of practice that are operationalised, to different degrees, when people with intellectual disabilities seek access to mainstream services: a commitment and adjustments to support inclusion of a wide range of marginalised people (diversity and inclusion ethos); adjustments to support inclusion of people with intellectual disabilities more specifically (differentiated adjustments); and, personal support for service users with intellectual disabilities. We argue that these three modes, at the service level, correspond in complex ways with three broader approaches to social inclusion: mainstreaming, differentiation and individualisation. Rather than contradictory modes of inclusion, our analysis suggests these approaches should be understood as complementary.
Points of interest
Some mainstream services that value 'inclusion' make adjustments to their service in order to better include people from different marginalised groups. Such adjustments have mixed outcomes for people with intellectual disability, whose specific needs are not always met.
Some mainstream services operate separate activities for users with intellectual disability. This helps them manage behavioural and communication challenges, and can help people with intellectual disability experience a sense of belonging. But separate activities also limit opportunities for full inclusion in the mainstream.
Often people with intellectual disability require their own personal support to be able to use mainstream services. Some mainstream services rely on such personal support as their main strategy to include people with intellectual disability. Other mainstream services work collaboratively with personal supporters to promote inclusion.
•A quality of life instrument for people with intellectual disability is described.•The instrument was developed for people with the lowest levels of functioning.•Confirmatory factor analysis showed ...a good fit of the eight domain model.•Internal consistency coefficients showed good to excellent alpha coefficients.
Although there are numerous quality of life instruments in the, field of intellectual disability, most of them are addressed to those, people with the highest levels of functioning, while only a few are, suitable for people with the lowest levels (i.e., people with profound, and severe intellectual disabilities, or people with intellectual and, developmental disabilities and other significant medical conditions or, disabilities). This study provides reliability and validity evidence of, the San Martín Scale, a 95-item Likert scale questionnaire that is, completed by a third-party respondent. The validation sample was composed, of 1770 people from Spain with intellectual and developmental, disabilities that showed extensive or pervasive support needs (8.7% had, mild intellectual disability, 28.25% moderate, 41.6% severe, and 21.4%, profound). The age of the participants ranged between 16 and 77 years old, (M=7.78; SD=12.32). The results suggested that the eight quality of, life domains assessed on the scale are reliable (Cronbach's alpha ranging, from .821 to .933). Confirmatory Factor Analyses provided construct, validity evidences related to the internal structure of the San Martín, Scale, and indicated that the eight first-order factor solution provided, the best fit to the data over unidimensional and hierarchical solutions. Implications of these findings and guidelines for further research are, discussed.
To examine the feasibility, acceptability and fidelity of individual Cognitive Stimulation Therapy (iCST) in people with intellectual disability (ID) and dementia.
We aimed to recruit forty dyads ...(carer and individual with dementia and ID) who were randomised to iCST or a waiting list control group. Both groups received treatment as usual. Family and paid carers delivered the manualised intervention (40 sessions over 20 weeks). Recruitment and retention of participants, intervention adherence, fidelity and acceptability were assessed. Outcome measures of cognition, adaptive functioning, quality of life (QoL) and carer outcomes were collected at baseline, midpoint (11 weeks) and at 21 weeks. Qualitative interviews were conducted with six carers about their experience of iCST.
Forty dyads were recruited over 10 months from 12 National Health Service trusts. One dyad dropped out and 87.5% and 97.5% completed the midpoint and end-point assessments respectively. Assessment of fidelity indicated that the correct session structure was not followed; 70% completed at least 20 sessions and there was a high level of satisfaction with iCST. QoL was significantly higher in the iCST arm at 21 weeks (adjusted mean difference: 3.11; 95% CI: 0.64 to 5.58). There were no differences in the other outcome measures.
The intervention was feasible and acceptable. A full-scale trial is warranted but some modifications are needed, including improved training and supervision for carers to improve fidelity.
Objectives: This study aims to identify the burdens among wives of disabled people in the light of some independent variables. Methods: In this descriptive cross-sectional study, 197 domestic wives ...were surveyed using a standardized questionnaire to measure the burden among wives of disabled people. Data were collected using the independent variables and Zarit caregiver burden scale (ZCBS) for burden. The study was conducted using interview techniques and analyzed via SPSS software, version 20 using descriptive and inferential statistical methods. Results: The study results showed that the average age was 35 years old, 30-39 years old, 52.3% were secondary school graduates, 68.5% were families with 1-4 children, 43.1% had insufficient income, and 61.4% were employed. Significant differences were observed in wives’ burdens in terms of their age, education level, family size, income, occupation, disability types, reasons, and duration (P<0.05). Discussion: Wives of disabled people live under significant burdens influenced by different independent variables depending on individual differences. Decision makers should give employment priority to the wives of the disabled to protect the family and fulfill its needs, as well as the need to focus on societal awareness of disability and what the wife and family of the disabled suffer.
This paper reviews existing approaches to inclusive, co-produced and agentic research in disability, and shares related reflections from a co-produced digital storytelling project. The project, which ...included self-advocates with intellectual disabilities, academics, and support staff was undertaken in Queensland, Australia, in 2018. This paper reflects on the potential and limitations of inclusive research methods by, and with, people with intellectual disabilities. We reflect on and analyse our experiences using a co-production framework and consider how this project increased participation and agency by, with, and for people with intellectual disabilities. The paper concludes with a summary of learnings and recommendations for future co-produced research activities including the importance of taking time to build capacity and establish the required foundations for more inclusive research.
Historically, researchers tended to conduct research on people with intellectual disabilities instead of researching with people as co-researchers.
Time and deliberate efforts are needed for all people involved in co-produced research, be they people with disabilities, family and carers, advocates, disability workers or academic researchers, to work together in ways which share power and decision-making.
This project reflects on the processes used to co-produce individual digital stories and a group digital story about the activities of a long-established group of self-advocates.
This includes reflecting on how the digital stories were shared and received; and how the research findings have been communicated, to date, including at a national conference about intellectual disability.
The project demonstrates the value of co-production methods and the extended benefits that can arise from this way of working collaboratively.
Background
COVID‐19 restrictions have significantly limited access to in‐person educational and healthcare services for all, including individuals with intellectual and developmental disabilities ...(IDDs). The objectives of this online survey that included both national and international families were to capture changes in access to healthcare and educational services for individuals with IDDs that occurred shortly after restrictions were initiated and to survey families on resources that could improve services for these individuals.
Methods
This was an online survey for caregivers of individuals with (1) a genetic diagnosis and (2) a neurodevelopmental diagnosis, including developmental delay, intellectual disability, autism spectrum disorder or epilepsy. The survey assessed (1) demographics, (2) changes in access to educational and healthcare services and (3) available and preferred resources to help families navigate the changes in service allocation.
Results
Of the 818 responses (669 within the USA and 149 outside of the USA), most families reported a loss of at least some educational or healthcare services. Seventy‐four per cent of parents reported that their child lost access to at least one therapy or education service, and 36% of respondents lost access to a healthcare provider. Only 56% reported that their child received at least some continued services through tele‐education. Those that needed to access healthcare providers did so primarily through telemedicine. Telehealth (both tele‐education and telemedicine) was reported to be helpful when available, and caregivers most often endorsed a need for an augmentation of these remote delivery services, such as 1:1 videoconference sessions, as well as increased access to 1:1 aides in the home.
Conclusions
COVID‐19 restrictions have greatly affected access to services for individuals with syndromic IDDs. Telehealth may provide opportunities for delivery of care and education in a sustainable way, not only as restrictions endure but also after they have been lifted.
Background
Stigma towards people with intellectual disability affects various aspects of their lives, including access to employment, housing, health and social care services. Furthermore, this ...stigma reduces their social opportunities and is even reflected in laws that diminish their autonomy. Due to the practical significance of this issue, the aim of this research is to explore for the first time the social stigma associated with intellectual disability in a representative sample of the Spanish population.
Method
A cross‐sectional quantitative descriptive study was conducted, involving a representative sample of the population (N = 2746). The study includes descriptive analyses and hierarchical regressions to examine various dimensions of stigma, such as attitudes, attributions, and intentions of social distance.
Results
Medium levels of stigma are found regarding attitudes and attributions towards people with intellectual disability, while levels are medium‐low concerning the intention of social distance. The most reliable indicators of stigma across its various dimensions encompass attitudes, attributions, and the intention of social distance. Factors that contribute to lower stigma include knowing someone with an intellectual disability, being willing to discuss intellectual disability with an acquaintance who has it and having a progressive political ideology. People with intellectual disability show more negative attributions towards themselves. Living with a person with an intellectual disability is another predictor of more stigmatising attitudes, but less intention of social distance. Results are mixed regarding age, gender, and educational level.
Conclusion
Combating the stigmatisation of people with intellectual disabilities must include comprehensive actions to address attitudes, attributions and behavioural intentions. Public policies, such as national campaigns and programmes, should include contact with and open conversations about intellectual disability, and sensitivity to sociodemographic variables.
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This book explores the possibilities and limitations re-theorizing disability using historical materialism in the interdisciplinary contexts of social theory, cultural studies, social and ...education policy, feminist ethics, and theories of citizenship.
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Proposes a relational analysis to understand disability within a global context; theorizes disability in critical relationship to race, gender, and sexuality within the context of transnational capitalism This is an interdisciplinary text that spans the humanities and the social sciences in the areas of social theory, cultural studies, social and educational policy, feminist ethics and theories of citizenship From education to sociology and even poetry theory, disability studies is a growing discipline that offers a unique critique of our standards of normalcy and acceptance in our society; interest in this topic, among all fields of research will continue to increase and it is important that we include books with this focus on our lists
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'The time for Disability and Difference in Global Contexts is now. At the forefront of both the global and materialist turns in disability studies, Nirmala Erevelles provides readers with an indispensable analysis of the ways in which disability in the current world order is constructed in relation to systems of gender, race, class, caste, and sexual orientation. Erevelles calls for a transformative body politic that resists the compulsory subject positions and relations of domination generated by neoliberal, capitalist modes of production. In and through that call, she remaps, in emancipatory ways, the terrain of disability studies, feminist studies, Marxist theory, postcolonial theory, and education.' –Robert McRuer, Professor of English, George Washington University
'In this wide-ranging exploration through the often violent historical imbrications of disability and race, Erevelles brings us to questions we will never soon forget. This book demonstrates the historical production of disability and other social differences as they press upon us today making our bodies, minds, senses matter as the conflicting social scenes that they are. No one in disability studies, or any of its affiliated fields, should go without reading this book; and no one will rest easy with their current disability knowledge once having read Disability and Difference in Global Context.' - Tanya Titchkosky, Associate Professor and Associate Chair, Sociology and Equity Studies in Education, the Ontario Institute for Studies in Education (OISE), University of Toronto
'Disability and Difference in Global Contexts offers an important corrective to established scholarship in disability studies by demanding a focus on intersectionality. In language by turns provocative and heartbreaking, Nirmala Erevelles explains and enacts a 'carnal historical materialism': the theoretical yet everyday dance between identity, injury, privilege and hope.' - Margaret Price, Associate Professor of English, Spelman College
'At once deeply personal and sharply theoretical, personal and probing, this book gives us the big picture: 'disability' in its historical, material, and global settings. Erevelles' brilliant work of social theory marks a new and crucial advance in its rigorous explorations of confluences of disability, race, class, gender, and citizenship.' - Susan Schweik, Professor of English, University of California at Berkeley
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This book explores the possibilities and limitations re-theorizing disability using historical materialism in the interdisciplinary contexts of social theory, cultural studies, social and education policy, feminist ethics, and theories of citizenship.
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Nirmala Erevelles is an associate professor of Social Foundations of Education at the University of Alabama.
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This book explores the possibilities and limitations re-theorizing disability using historical materialism in interdisciplinary contexts
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Making Bodies that Matter: The Political Economy of 'Becoming' (Disabled) Of Ghosts and Ghetto Politics: Embodying Education Policy as if Disability Mattered 'Unspeakable' Offenses: Disability Studies at the Intersection of Multiple Differences (with Andrea Minear) Embodied Antimonies: Feminist Disability Studies Meets Third World Feminism (Im)Material Citizens: Cognitive Disability, Race, and the Politics of Citizenship The 'Other' Side of the Dialectic: Towards a Materialist Ethic of Care
Following the publication of the UN Convention on the Rights of Persons with a Disability, the rights and situation of people with disabilities have once again become a focus of national, European ...and international policy and advocacy. Mansell et al., (
2007
) identified that there were over 1million people with disabilities in Europe living in institutions of over 30 places in size and almost 1.4 million in some form of residential care. This paper reports findings from a review of national and international sources of data on living situation for 27 European countries as of 2019. Although there had been some changes, especially for children and especially in countries where EU structural funds had been used, there were still 1.4 million people living in residential care, with many still for more than 30 people. People with intellectual and developmental disabilities were those who were most likely to still be in residential services. We consider some of the potential reasons for these findings and discuss what might be needed to really advance deinstitutionalisation.
Point of interest
People with disabilities have the same rights as everyone else to live in the community. This paper looks at where people with disabilities live and how this has changed over time.
We found that many people with disabilities still live in institutions and that the number had not changed much since 2007.
There have been more changes for children than adults. Fewer children now live in institutions.
People with intellectual disabilities are most likely to still live in institutions and least likely to be living and participating in the community.
Many countries in Europe still do not have good information about where people with disabilities live and whether they have choice and control or are active citizens.
There was more change in countries which had received money from the European Union. However, in many countries, there were no plans for how to help more people to live in the community.
Background:
Deaths of people with intellectual disabilities are often unplanned for and poorly managed. Little is known about how to involve people with intellectual disabilities in end-of-life care ...planning.
Aim:
To explore the perspectives of people with intellectual disabilities, families, health and social care professionals and policy makers on end-of-life care planning within intellectual disability services.
Design:
A total of 11 focus groups and 1 semi-structured interview were analysed using qualitative framework and matrix analysis. The analysis was conducted inclusively with co-researchers with intellectual disabilities.
Setting/participants:
A total of 60 participants (14 people with intellectual disabilities, 9 family carers, 21 intellectual disability professionals, 8 healthcare professionals and 8 policy makers) from the UK.
Results:
There were differences in how end-of-life care planning was understood by stakeholder groups, covering four areas: funeral planning, illness planning, planning for living and talking about dying. This impacted when end-of-life care planning should happen and with whom. Participants agreed that end-of-life care planning was important, and most wanted to be involved, but in practice discussions were postponed. Barriers included issues with understanding, how or when to initiate the topic and a reluctance to talk about dying.
Conclusions:
To develop effective interventions and resources aiding end-of-life care planning with people with intellectual disabilities, clarity is needed around what is being planned for, with whom and when. Research and development are needed into supporting intellectual disability staff in end-of-life care planning conversations. Collaboration between intellectual disability staff and palliative care services may facilitate timely end-of-life care planning and thus optimal palliative end-of-life care.
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