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Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Excluded from the Excluded: People with Intellectual Disabilities in (and out of) Official Development Assistance

Inclusion International
2020

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This report from Inclusion International analyzes data available through the Organization for Economic Cooperation and Development (OECD) Development Assistance Committee (DAC)’s Creditor Reporting System (CRS), which reveals that mainstream development projects fail to include people with intellectual disabilities, and in many cases use project methodologies that promote segregation and other human rights violations.

 

Analysis of ODA data from 2014 to 2018 found that 99.98% of ODA funding did not include people with intellectual disabilities, that 36% of the ODA projects that did include people with intellectual disabilities were not CRPD-compliant, and that only 2% of aid relevant to people with intellectual disabilities and their families was delivered through OPDs.

 

This report urges action from donors to ensure that the commitment to disability-inclusive development under Article 32 of the CRPD is also fulfilled for people with intellectual disabilities, and sets out recommendations for funders to ensure CRPD-compliance and inclusion in the projects they support.

Funding ≠ Inclusion: Segregation and CRPD Non-Compliance in Official Development Assistance

Inclusion International
November 2020

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This two-page summary resource compiles key data on the CRPD-compliance of Official Development Assistance (ODA)-funded programmes. This analysis was originally published in Inclusion International's 2020 report, Excluded from the Excluded, which revealed that 36% of projects that included people with intellectual disabilities in 2018 used methodologies that promoted segregation.

 

This summary resource profiles key data on the CRPD compliance of ODA-funded programme methodologies by thematic area - including livelihoods, education, emergency response, and service provision programmes. The summary resource also shares key recommendations for organizations implementing programmes to ensure CRPD-compliance.

No one left behind? Exclusion of People with Intellectual Disabilities in Official Development Assistance

Inclusion International
November 2020

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This one-page factsheet presents key data from Inclusion International's 2020 report "Excluded from the Excluded," which revealed that people with intellectual disabilities are excluded from 99.98% of Official Development Assistance (ODA)-funded programmes. The factsheet also shares key recommendations for funders to ensure that no one is left behind by ODA funding.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

A Document Review of Exclusionary Practices in the Context of Australian School Education Policy

IACONO,Teresa
KEEFFE, Mary
KENNY, Amanda
MCKINSTRY, Carol
2019

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Internationally, there is a commitment to inclusive education for students with disability. In Australia, equality of access to mainstream schools is a key policy feature, with educational exclusion of children with disability being unlawful. In this review, the aim was to identify and analyze contemporary documents that point to failures in inclusive policy and legislation in Australia and the state of Victoria by demonstrating educational exclusion of school students with disability. A search of the gray literature was conducted to identify relevant documents from 2010 to 2017. Reference lists of retrieved documents were also searched for other sources. The review included 23 documents and findings demonstrated that the needs of children and families are often not met, with a disconnection evident between inclusive educational policy, legislation, and practices that exclude children with disability from mainstream education. Restrictive practices and gatekeeping act to dissuade families from enrolling children in mainstream education, with many seeking enrolment in special schools. However, concerns with special school practices, such as the use of restrictive interventions have been documented. Parents have resorted to homeschooling, with associated emotional and economic consequences. Tensions between schools and parents were evident, with parents not always having the opportunity to be fully involved in decision-making processes and planning. The key finding of this review was a clear gap between policy and legislative intentions and practices in schools. Lack of clarity on reasonable adjustments and an underpinning research evidence base to policy results in schools being left to develop their own practices. Strong leadership is needed from principals, and a whole of school commitment, to traverse policy practice gaps that continue to impact on the ability of children with disability to be well-supported in accessing mainstream schools.

Eating together as a social network intervention for people with mild intellectual disabilities: a theory-based evaluation

KRUITHOF, Kasper
SUURMOND, Jeanine
HARTING, Janneke
2018

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Purpose: People with mild intellectual disabilities (MID) generally live independently among the wider community. This can result in social exclusion and feelings of loneliness. Therefore, social work organizations aim to socially include people with MID through organizing activities in neighbourhoods that should lead to enlarged networks and increased societal participation. The “Communal Table” is such a, group-orientated, intervention that organizes monthly dinners in Amsterdam, the Netherlands. Because little is known about the effective- ness of interventions aiming to bring about social inclusion for people with MID we explored which types of participants were reached and whether and how the intervention brought about the intended outcomes.

 

Methods: We performed a theory-based evaluation, using participatory observations and qualitative interviews (n = 19). The Communal Table attracted a diverse and loyal group of participants.

 

Results: We distinguished four types of participants—lonely participants, activist participants, satisfied participants and calculating participants—whose pre-existing networks played a significant role in their individual needs for support and the outcomes of the intervention. Outcomes reported included experiences of conviviality and warmth, temporary relief of underlying problems and an overall positive opinion about the intervention, but network enlargement or increased societal participation were not reported.

 

Conclusions: Our findings suggest that social network interventions for people with MID should be tailored to participants’ pre-existing networks and related individual needs to be successful.

Collaboration in Inclusive Research: Competencies Considered Important for People With and Without Intellectual Disabilities

EMBREGTS, Petri J C M
TAMINIAU, Elsbeth F
HEERKENS, Luciënne
SCHIPPERS, Alice P
VAN HOVE, Geert
2018

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With inclusive research being an emerging field of interest, there is growing recognition that establishing collaborative relationships between researchers with and without ID entails specific demands. However, since studies on collaboration in inclusive research merely provide individual reports on experiences and challenges in one particular research project, building a shared knowledge base of concrete competencies considered important for those involved merits attention. This study contributes to a shared knowledge base in asking people with and without ID with (experiential) knowledge of inclusive research for competencies they consider important in collaborating in inclusive research in general, that is, without reference to a specific research project they participated in. Researchers with and without ID, coaches, policy makers, and teachers involved in the education of people with ID participated in this study. Data were collected from a focus group, individual interviews, and expert meetings. Qualitative analysis was carried out

immediately after each moment of data collection, providing the use of increasing insights in each consecutive phase of data collection. Participants describe that establishing collaborative relationships between researchers with and without ID in inclusive research requires the commitment of both parties. They mentioned concrete competencies they consider important for people with and without ID to collaborate in inclusive research in the categories: building a mutual relationship, communicating, achieving a collaboration in which everyone involved can contribute, being aware of skills and developmental needs, and being aware of impact. Clearly, describing competencies for people with and without ID is not intended to exclude anyone who does not possess these competencies from collaboration in inclusive research. However to avoid “tokenism,” this study might contribute to effective participation of people with ID in inclusive research in providing concrete competencies considered important in collaboration.

An Opportunity for Charity? A Catholic Tradition in Understanding Disability and Its Impact on Ministry

MASTERS, Anne
2016

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David Perry, the father of a boy with Down Syndrome, wrote an angry reaction to Pope Francis’ references to individuals and families living with disabilities in Amoris Laetitia. Perry is con- cerned about the limited perspective of persons with disabilities that is portrayed in the texts, which show families commended for their love and tolerance, with a lack of appreciation for the person with a disability as a person of interest, rather than an object of pity. He offers further reflections of caution and hope in response to words and actions of Pope Francis during a Mass celebrating disability awareness. Perry’s comments provide the starting point for reflecting on the image of persons with disabilities presented in Amoris Laetitia and a discussion of possibilities for charity to serve as a corrective for this and pastoral practice.

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

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