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The temporalities of supported decision-making by people with cognitive disability

WIESEL, Ilan
SMITH, Elizabeth
BIGBY, Christine
THEN, Shih-Ning
DOUGLAS, Jacinta
CARNEY, Terry
2020

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In many societies, people with cognitive disability have been pre- sumed to lack reasoned decision-making capacity. Consequently, substituted decision-making laws and practices have traditionally authorised some people such as parents, guardians or medical professionals, to make decisions on their behalf. Several countries are now moving towards an alternative supported decision-making paradigm whereby people with different cognitive abilities are supported to make decisions that reflect as much as possible their ‘will, preferences and rights’. In this paper we examine how geo- graphical thinking about temporalities might illuminate some of the legal, ethical and practical complexities of supported decision- making. The paper draws on qualitative data from interviews with people with intellectual disabilities or acquired brain injury, and those who support them in making decisions. We examine how temporal scales and boundaries shape the determination of decision-making capacity; how decision-makers’ ‘will and preferences’ are interpreted by supporters; and how the labour of support for decision-making is organised. We argue that further geographical engagement with supported decision-making can help significantly advance this important disability rights agenda.

Looking under the veil: Challenges faced by people with disabilities in cross-border entrepreneurship

MATSAURE, Keresencia
CHINDIMBA, Agness
ZIMANO, Felistas R
RUFFIN, Fayth
September 2020

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Background: Cross-border entrepreneurship is one source of livelihood that is transforming people’s lives, especially those with limited resources and educational qualifications and those in need of supplementary earnings to complement meagre formal earnings. However, despite strides made to make this avenue worthwhile, this Zimbabwean study shows that hidden hindrances still persist from procedural and structural barriers from road entry point management systems. To people with disabilities (PWDs), the impact of these hidden barriers is severe to the extent of obstructing their optimum progression into cross-border entrepreneurship.

 

Objectives: This article sought to interrogate some veiled challenges in border management systems affecting PWDs’ quest to venture into cross-border entrepreneurship. This angle has, to this end, been timidly addressed as most organisations and legislation have concentrated on making things work for the majority of the populace.

 

Method: Qualitative phenomenological method in which researchers’ lived experiences, review of literature, ideas and opinions is complemented by secondary survey data from a road entry point management system study in the Zimbabwean setting.

 

Results: Cross-border entrepreneurship has potential to transform people’s lives: 1) road and border management systems’ procedural and structural complications present hidden challenges impeding PWDs’ entry and optimum participation in cross border entrepreneurship, 2) people with disabilities are not automatically dependents; in fact, most have dependents looking up to the, 30 social construction of disability persists and must be curbed and 4) there is a need to institute a ‘stakeholders triad approach’.

 

Conclusion: The existing road entry points’ management systems are not informed by considerations from PWDs, hence the existence of hidden challenges. Cross-border entrepreneurship can open significant livelihood avenues to PWDs. A stakeholders ‘triad-approach’, proposed herein, can solve some of the policy discrepancies as it recommends utilising inputs from PWDs, research and policy-makers.

 

African Journal of Disability, Vol 9, 2020 

Disability inclusion in the Western Balkans and Eastern Partnership countries. Disability Inclusion Helpdesk Report No: 51.

CORBY, Nick
CLUGSTON, Naomi
September 2020

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This briefing note provides guidance on how to incorporate disability inclusion within economic and governance reform projects. It is intended to inform the UK Foreign, Commonwealth and Development Office’s (FCDO) Good Governance Fund (GGF). This Note provides basic, introductory guidance on disability inclusion to FCDO advisers and managers engaging with economic and governance reform and sets out opportunities for the FCDO’s programmes and policy dialogue to deliver positive impacts for people with disabilities. The Note addresses three key questions: 2 1. What is the broad status of the rights of people with disabilities in GGF countries and are there any significant differences between the countries? 2. What are the recommended entry points for incorporating disability inclusion within economic and governance reform projects within the five GGF thematic areas? 3. How should the GGF incorporate disability inclusion into the next business case?

 

An annex provides short notes on several factors for each country. The factors are: the legal framework; disability prevalence; economic inclusion; social inclusion; institutionialisation; access to justice; receptions and representation in the media.

A country report: impact of COVID-19 and inequity of health on South Korea’s disabled community during a pandemic

LEE, Seungbok
KIM, Jongbae
2020

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The South Korean media boasts of its leading success–during the escalation of the coronavirus outbreak–in flattening of the curve thereby mitigating the grave outcomes of the public health crisis. Much of the success is reportedly attributed to the rapid and advanced development of test kits, essential equipment and implementation of protocols in precautionary measures. However, it has been an arduous task to stay afloat for one particular vulnerable community. The disabled citizens of Korea were confronted by the realities of health inequity during this disastrous period. Pre-existing the pandemic onset, the disabled community have faced stigmatization and under many circumstances de-prioritization by their own society. Through the lense of a visiting physician, my hope is to poignantly and respectfully share personal experiences and thoughts on these realties impacted by the COVID-19 pandemic in South Korea.

Employment of young people with mental health conditions: making it work

SUBRAMANIAM, Mythily
ZHANG, Yunjue
SHAHWAN, Shazana
VAINGANKAR, Janhavi Aijt
SATGHARE, Patrika
LIN TEH, Wen
ROYSTONN, Kumarasan
MING JANRIUS GOH, Chong
MANIAM, Yogeswary
LIANG TAN, Zhuan
TAY, Benjamin
VERMA, Swapna
ANN CHONG, Siow
2020

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Purpose: The current study was undertaken to understand and describe the meaning of work as well as the barriers and facilitators perceived by young people with mental health conditions for gaining and maintaining employment.


Materials and Methods: Employing a purposive and maximum variation sampling, 30 young people were recruited and interviewed. The respondents were Singapore residents with a mean age of 26.8 years (SD 1⁄4 4.5, range 20–34years); the majority were males (56.7%), of Chinese ethnicity (63.3%), and employed (73.3%), at the time of the interview. Verbatim transcripts were analysed using inductive the- matic analysis.

 

Results: Three global themes emerged from the analyses of the narratives, which included (i) the mean- ing of employment, (ii) barriers to employment comprising individual, interpersonal and systemic difficul- ties and challenges participants faced while seeking and sustaining employment and (iii) facilitators of employment that consisted of individual and interpersonal factors that had helped the young persons to gain and maintain employment.

 

Conclusions: Stigma and discrimination emerged as one of the most frequently mentioned employment barriers. These barriers are not insurmountable and can be overcome both through legislation as well as through the training and support of young people with mental health conditions.

A glimpse into smartphone screen reader use among blind teenagers in rural Nepal

SANKHI, Prakash
SANDNES, Frode Eika
2020

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Purpose

Access to appropriate assistive technology is a challenge worldwide and especially in low GDP-per-capita countries. Nepal is one example of a country with several coinciding challenges: some claim having a high rate of blindness in the general population, a low-GDP-per capita and some studies claim it has a low literacy rate, especially in rural areas. Without appropriate assistive technology, some disabled youth may not get full access to education.

 

Methods

To gain insight into assistive technology use in rural Nepal, five blind teenagers in a mixed secondary school with disabled and non-disabled students in rural Nepal were interviewed about their daily smartphone use.

 

Results

The results show that all the participants used screen readers on donated smartphones. None of the participants had received formal training in using smartphone screen readers and therefore lacked knowledge about basic and essential operational aspects of the devices as well as misguided expectations about the technology.

 

Conclusions

One implication of the findings is that smartphone accessibility features training material needs to be made easily available to schools and all disabled youth worldwide, as smartphones are increasingly becoming available in low-income remote regions with low literacy rates. The built-in accessibility features of smartphones promise disabled youth a non-stigmatizing platform for social participation and access to the information society.

Special education reforms in Ireland: changing systems, changing schools

KENNY, Neil
MCCOY, Selina
MIHUT, Georgiana
2020

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Ireland has a distinct and complex history regarding the education of persons with special educational needs (SEN) and in its approach to inclusion. Special and general education largely developed in parallel and separately. As recently as the 1990s, legal actions by parents seeking educational rights for children with severe disabilities prompted appropriate provision for these students and a shift towards inclusive schools. The Education for Persons with Special Educational Needs (EPSEN) Act set out important changes – although not all implemented – followed by a series of changes in resource allocation, culminating in the removal of the requirement for students to be diagnosed in order to access supports. International evidence suggests that resource allocation based on learners’ profile and SEN diagnosis have been linked to the overidentification of SEN students. Ability to pay for private assessments has also been shown to exacerbate inequality in Ireland and beyond. We examine how Ireland's policy changes are impacting on schools and students, drawing on emerging evidence. We consider concerns over the adequacy of teacher professional development, the intended and potentially unintended consequences from a process of ‘domestication’ at the school level and ultimately whether the changes are accompanied by sufficient and appropriate accountability measures.

Differentiation and individualisation in inclusive education: a systematic review and narrative synthesis

LINDNER, Katharina-Theresa
SCHWAB, Susanne
2020

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This study integrates research about differentiation and individualisation in inclusive education since the UN Convention on the Rights of Persons with Disabilities in 2006 (United Nations, 2006). The concept of inclusive education for all learners increases the requirement for teachers to create educational spaces that encourage stimulating teaching and learning processes. Accordingly, a methodological shift from the traditional ‘one-size-fits-all’ model to individualised teaching and learning offers a starting point for educational equity. The aim of this paper is to investigate the progress of differentiated and individualised teaching practices in inclusive classroom settings considering collaboration and teamwork, instructional practices, organisational practices and social/emotional/behavioural practices (see Finkelstein, Sharma, & Furlonger, 2019. “The Inclusive Practices of Classroom Teachers: A Scoping Review and Thematic Analysis.” International Journal of Inclusive Education, 1–28). Results of a criteria-based review considering papers from 2008 to December 2018 encompass 17 articles that were included in the narrative synthesis. Results indicated that the following aspects are characteristic of inclusive education: collaboration and co-teaching, grouping, modification (of assessment, content, extent, instruction, learning environment, material, process, product and time frame), individual motivation and feedback, and personnel support of students. Implications of the findings and gaps in the research have been outlined.

Inclusion, access, and accessibility of educational resources in higher education institutions: exploring the Ethiopian context

BEYENE, Wondwossen Mulualem
MEKONNEN, Abraham Tulu
GIANNOUMIS, George Anthony
2020

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The right of persons with disabilities for equal access to education and educational resources is enshrined by international and country-specific anti-discrimination laws. Taking the Ethiopian context as an example, this paper sought to identify barriers of access to educational resources and explored ways for removing them. Seventeen students with visual impairments studying at Hawassa University were selected for semi-structured interviews. Moreover, five individuals working at the disability centre and the university library were interviewed. The results of the interviews were analysed thematically using the International Classification of Functioning, Disabilities and Health (ICF) as a framework. Access and accessibility problems that emanate from the learners’ diverse background, lack of educational resources in alternative formats, lack of institutional tools (policy, procedure, guidelines, etc.) to bridge the gap between law and practice, and the digital divide were among the problems identified and discussed. At the end, the paper showed how libraries, revitalised as learning and information commons, could help to ensure the accessibility of educational resources and help learners with disabilities to acquire skills that may help them in their studies and their future undertakings.

Government funding to support disability inclusion in Kenya

Development Initiatives
September 2020

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This report presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It provides analysis of government budget allocations to disability inclusion programmes in Kenya over the period of financial year 2016/17 (FY2016/17) to financial year 2020/21 (FY2020/21). The analysis focuses on disability-relevant ministries, departments and agencies at the national level, including those led by the State Department for Social Protection, the Office of the President, the State Department for Early Learning and Basic Education, and the State Department for Vocational and Technical Training. Due to limitations in the available data, the analysis looks primarily at the education and social protection sectors.

 

This report has been funded with UK aid from the UK government, and was developed with the support of the Inclusive Futures consortium. The opinions expressed are those of the author(s) and do not necessarily reflect the views or policies of the UK government or other members of the Inclusive Futures consortium.

Barriers experienced by people with disabilities participating in income-generating activities. A case of a sheltered workshop in Bloemfontein, South Africa

TINTA, Nokuthula
STEYN, Hester
VERMAAS, Jana
2020

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Background: People with disabilities often participate in income-generating activities (IGAs) in sheltered workshop in South Africa. However, they face many barriers that limit their ability to participate effectively in economic activities hosted by the workshops.

 

Objectives: To illustrate the barriers that limit the participation of people with disabilities in IGAs in a sheltered workshop.

 

Method: A qualitative exploratory single case study was conducted in a sheltered workshop. Eighteen participants, age 22 to 52 years with various disabilities were purposively sampled. Observations and semi-structured interview guides were used to generate data. Verbatim transcription was used after which content analysis was applied to identify ideas and concepts relating to barriers experienced by people with disabilities participating in IGAs.

 

Results: Some of the barriers participants experienced included institutional barriers (ability to use working tools, inability to concentrate for long periods, lack of funds, language barriers, lack of motivation, activities that are not stimulating and lack of artistry skills) and attitudinal barriers (exclusion from decision making) These barriers had an adverse influence on their performance in IGAs.

 

Conclusion: The study found eight different barriers that existed in a sheltered workshop which limited the participation of the people with disabilities that attended the workshop. This information can be used to develop strategies to address each barrier and promote increased participation of the individual thereby improving their quality of life.

 

 

African Journal of Disability, Vol 9, 2020 

Rehabilitation: mobility, exercise & sports; a critical position stand on current and future research perspectives

VAN DER WOUDE, Lucas H V
HOUDIJK, Han J P
JANSSEN, Thomas W J
SEVES, Bregje
SCHELHAAS, Reslin
2020

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Background: Human movement, rehabilitation, and allied sciences have embraced their ambitions within the cycle of “RehabMove” congresses over the past 30 years. This combination of disciplines and collabo- rations in the Netherlands has tried to provide answers to questions in the fields of rehabilitation and adapted sports, while simultaneously generating new questions and challenges. These research questions help us to further deepen our understanding of (impaired) human movement and functioning, with and without supportive technologies, and stress the importance of continued multidisciplinary (inter)national collaboration.

 

Methods: This position stand provides answers that were conceived by the authors in a creative process underlining the preparation of the 6th RehabMove Congress.

 

Results: The take-home message of the RehabMove2018 Congress is a plea for continued multidisciplin- ary research in the fields of rehabilitation and adapted sports. This should be aimed at more individual- ized notions of human functioning, practice, and training, but also of performance, improved supportive technology, and appropriate “human and technology asset management” at both individual and organ- ization levels and over the lifespan.

 

Conclusions: With this, we anticipate to support the development of rehabilitation sciences and technol- ogy and to stimulate the use of rehabilitation notions in general health care. We also hope to help ensure a stronger embodiment of preventive and lifestyle medicine in rehabilitation practice. Indeed, general health care and rehabilitation practice require a healthy and active lifestyle management and research agenda in the context of primary, secondary, and tertiary prevention.

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.

Representation and methods of normalisation: Narratives of disability within a South African tertiary institution

DEVAR, Teagan
BOBAT, Shaida
REUBEN, Shanya
July 2020

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Background: The manner in which disability is understood influences how individuals within a society, its institutions, policies and structures are able to accommodate and support people with disabilities (PWD) (Kaplan 2000). Understanding how students with disabilities (SWD) within a higher education context perceive and experience disability as well as how key players, namely, lecturers and disability unit (DU) staff, who influence that experience, is important in further shaping policy and providing a truly inclusive environment for all within HEIs.

 

Objectives: The study aimed to examine the narratives of disability among SWD, lecturers and the DU within a tertiary institution, with a view to better understand their experiences and required initiatives to address the challenges of disability within a higher tertiary institution.

 

Method: The study drew on three theoretical frameworks: social constructionism, feminist disability theory and the Foucauldian perspective. Data for the study were collected through in-depth semi-structured interviews with 12 SWD, seven members of staff from the institution’s DU and five lecturers from within the School of Applied Human Sciences. Data were analysed using thematic analysis.

 

Results: The findings suggested that in spite of both facilitating and positive representations of disability, the dominant representation of disability was perceived as challenging and as a result, disempowering. Students with disabilities were found to adapt, and consequently modify their behaviour by disassociating from their disability in order to fit in.

 

Conclusion: The study highlights the need for creating spaces and engagement within an HEI context that both challenge negative discourses of disability, and at the same time, promote positive representations of disability.

 

 

African Journal of Disability, Vol 9, 2020

Human-centred design in humanitarian settings: Methodologies for inclusivity

HAMILTON, Zoe
CASSWELL, Jenny
ALONSO, Aline
July 2020

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This report documents the human-centred design process used in a project conducted in 2020 in Nairobi, Kenya. It includes research tools that can be used in other contexts, as well as the adaptations that were made to research tools to ensure they were inclusive. These tools are followed by the main lessons learned, and recommendations for others who want to implement a similar process.

The goal of this project was to better understand how people living with disabilities in humanitarian contexts use mobile technology, the barriers they face in accessing mobile services, and the opportunities that mobile might present to increase access to basic services in their daily lives. The target population for this project was urban refugees living with visual or hearing impairments in Nairobi, Kenya. 

The human-centred design tools used included: Location Mapping, User Journeys, Communication Mapping, Future Me and Daily Diaries. 

Understanding paid support relationships: possibilities for mutual recognition between young people with disability and their support workers

ROBINSON, Sally
GRAHAM, Anne
FISHER, Karen R
NEALE, Kate
DAVY, Laura
JOHNSON, Kelley
HALL, Ed
2020

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The quality of paid relationships is key for effective support, yet little is known about how people receiving and providing sup- port understand and experience the relationship. This paper reports on recent research that explored the role of relationships with paid support workers in strengthening the rights and well- being of young people with cognitive disability in Australia. The research used photo-rich participatory methods with 42 pairs of young people and their support workers and drew on Honneth’s recognition theory to specifically explore experiences of being valued, respected and cared about in their work together. The findings point to the importance of these con- nected aspects of recognition in paid support relationships, highlighting both the presence and absence of these, as well as experiences of misrecognition. The implications of recognition for strengthening support need close consideration in an inter- national context characterised by personalisation of support, resource constraints and inquiries into poor practice.

Dimensions of invisibility: insights into the daily realities of persons with disabilities living in rural communities in India

GUPTA, Shivani
DE WITTE, Luc P
MEERSHOEK, Agnes
2020

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Persons with disabilities in rural India do not have the opportunity to lead a self-determined life and be included in their community as required by the convention on the rights of persons with disabilities. To investigate their experience of living everyday life and the amount of agency they are able to exercise, in-depth interviews were undertaken. The Capability Approach (CA) was used to ana- lyse the situation that was seen in terms of outcome of the interplay between internal and external factors resulting in loss of agency. The results show that the dependency they experience due to lack of adequate support to undertake activities and being completely dependent on the family places them in a vicious circle of ‘self-worthlessness’. Reducing the dependency disabled people face and chang- ing perceptions of the community towards disability may break this circle.

The social and human rights models of disability: towards a complementarity thesis

LAWSON, Anna
BECKETT, Angharad E
2020

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This article aims to reorient thinking about the relationship between the long-standing social model of disability and the rapidly emerging human rights model. In particular, it contests the influential view that the latter develops and improves upon the former (the improvement thesis) and argues instead that the two models are complementary (the complementarity thesis). The article begins with a discursive analysis of relevant documents to investigate how each of the two models has been used in the crafting and monitoring of the UN Convention on the Rights of Persons with Disabilities. This highlights the increasing importance of the human rights model in this policy context. It also provides examples of the operation of the two models which inform the remainder of the discussion. We then critique the comparisons between the models which underpin the improvement thesis; and, drawing on Foucault’s technologies of power and Beckett and Campbell’s ‘oppositional device’ methodology, deepen and develop this comparative analysis. The result, we argue, is that the two models have different subjects and different functions. In the human rights context, their roles are complementary and supportive.

Changes in Living Conditions of People with ID: A Follow-Up after 16 Years

CARLSSON, Õie Umb
2020

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Background: The Swedish disability policy has an ambition that people with disabilities should have the possibility to live like everyone else in the community. A study in 2001 described living conditions of people with ID born 1959–1974 in Uppsala County as compared to the general population in the same age group. The results showed differences between the two groups, particularly regarding employment, finances, and social life.


Specific Aims: The aim of the present study were to explore changes in living conditions of a group of people with ID in a 16-year perspective and to compare the outcomes with changes in living conditions of the general population in corresponding age groups.


Methods: Information on the living conditions of people with ID for 40 persons who participated in the study 2001 was obtained through proxy reports at 2001 and 2017. National welfare statistics were used to obtain data on the general population. The study focus objective living conditions selected by people with ID including housing, occupation, nances, recreational and cultural activ-
ities, family and social relations, society participation, and personal safety.


Findings: The results showed clear differences in living conditions to the disadvantage of the sample of people with ID. However, no differences related to gender and level of functional limitations were identied within the study group.


Discussion: Even if the study sample is small, the study makes an important contribution to the body of existing literature because knowledge is insufficient on changes over time regarding the living conditions of people with ID in community-based residences. Such knowledge is necessary to identify patterns of equality and inequality and illustrate to what extent people with ID share welfare benefits over time.

Inclusion Works Uganda Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Uganda?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Uganda, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Uganda. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

The opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.

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