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A Global Agenda for Inclusive Recovery: Ensuring People with Intellectual Disabilities and Families are Included in a Post-COVID World

Inclusion International
June 2021

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This report documents the experience of exclusion of people with intellectual disabilities and their families during the COVID-19 pandemic. These experiences reveal pre-existing structural inequalities that affected the lives of people with intellectual disabilities and their families before COVID-19, during the pandemic, and beyond, and this report raises up the voices of those most excluded in a time of global crisis and demands an inclusive COVID-19 recovery.

 

This report includes the experiences of people with intellectual disabilities and families across eight different issue areas. Across these themes, we examined how and why people with intellectual disabilities were left out and excluded in pandemic responses, what pre-existing conditions and inequalities contributed to their vulnerability and exclusion, and how future policy structures could begin to address both this immediate and systemic exclusion.

 

Together, these experiences and policy solutions form our global agenda for inclusive COVID-19 recovery, an action plan to ensure that government efforts to ‘build back better’ are inclusive of people with intellectual disabilities and their families.

A global agenda for inclusive recovery: Ensuring people with intellectual disabilities and families are Included in a post-COVID world

INCLUSION INTERNATIONAL
May 2021

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This report documents the experiences of people with intellectual disabilities and their families during COVID-19 and proposes a global agenda for inclusive COVID recovery developed by Inclusion International’s membership. The global agenda is a set of imperatives for policy and programming to ensure that “building back better” creates a more inclusive world.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

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.

Opening the GATE: systems thinking from the global assistive technology alliance

LAYTON, Natasha
BELL, Diane
BUNING, Mary Ellen
CHEN, Shih-Ching
CONTEPOMI, Silvana
RAMOS, Vinicius Delgado
HOOGERWERF, Evert-Jan
INOUE, Takenobu
MOON, Inhyuk
SEYMOUR, Nicky
SMITH, Roger O
DE WITTE, Luc
2020

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Purpose: 

This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.

 

Methods: 

The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.

 

Results: 

This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.

 

Conclusion:

 Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.

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.

Disability inclusion helpdesk; evidence digest issue 2, December 2019

SDDirect
November 2019

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Produced by the Disability Inclusion Helpdesk. A summary of the latest evidence on disability inclusion in international development from programmes and researchers around the world are highlighted:

·         Access to health: the missing billion

·         Sexuality and disability for children and youth in China

·         Analysing INGO practice 

·         Disability and technology

·         Disability and inequality in Liberia 

·         Pregnancy, childbirth and motherhood in Nepal 

·         Violence against women and girls with disability in Nepal

 

Brief overviews are provided of policy and news from the UK, various UN organisations, Asia Pacific Social Protection Week and South Africa.

 

Brief updates of DFID's (UK Departments for International Development) funded programmes are given including: Disability Inclusive Development (DID) Programme; Inclusion Works; The Disability Catalyst Programme; Programme for Evidence to Inform Disability Action (PENDA), Innovating Pathways for Employment Inclusion (IPEI)

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

An amalgam of ideals – images of inclusion in the Salamanca Statement

MAGNÚSSON, Gunnlaugur
2019

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The Salamanca Statement is a primary point of departure in research and policy on inclusive education. However, several problems have surfaced in the 25 years since its publication. In particular, several different interpretations of the concept of inclusive education and its enactment in practice have arisen. For instance, the definition of the pupil groups in focus varies greatly. There are also varying definitions of the importance of pupil-placement, when it comes to organisation of inclusive education. Using a theoretical framework combining Bacchi’s [1999. Women, Policy and Politics. The Construction of Policy Problems. London: Sage Publications] poststructural policy-analysis and concepts from Popkewitz [2009. “Curriculum Study, Curriculum History, and Curriculum Theory: The Reason of Reason.” Journal of Curriculum Studies 41 (3): 301–319. doi:10.1080/00220270902777021], this article illustrates that The Salamanca Statement allows for a variety of interpretations of inclusion. As a policy-concept, inclusion encompasses an amalgam of political ideals, including welfare-state ideals where education is viewed as a public-good, as well as market-ideals of education as a private-good. Policies of inclusion also define the desired citizen, through categories of disadvantaged children, the ones excluded but to be included for their own good as well as for the good of the future society. The conclusions are that researchers and policy-makers should elucidate what they mean by inclusion with for instance moral- and practical arguments rather than vague references to The Salamanca Statement.

Sport coaches as policy actors: an investigation of the interpretation and enactment of disability and inclusion policy in swimming in Victoria Australia

HAMMOND, Andrew M
PENNEY, Dawn
JEANES, Ruth
2019

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This paper draws upon education policy sociology, and sport coaching literature, in critically examining sport coaches as policy actors. Stephen Ball and colleagues’ conceptualisation of different policy actor positions and roles provided the framework for research that investigated how eight professional swimming coaches in Victoria, Australia, interpreted and enacted disability and inclusion policy. A discourse analysis of semi-structured interviews with the eight coaches reveals the complexities associated with how and why different coaches interpret and enact disability and inclusion policy imperatives in different ways in their specific club contexts. Data are presented that shows coaches adopting multiple and hybrid policy actor positions and roles as disability and inclusion policy was interpreted, translated and ultimately, expressed as pedagogic rules and practices. Our discussion brings to the fore questions about power, agency and control in coaching, while highlighting both limits and possibilities for the enactment of inclusive disability sport policies by swimming coaches working in Victoria, Australia. In conclusion we suggest that this research illustrates that coaches are capable of enacting social change, and have some agency to do so, but at the same time appear constrained by established discourses that shape policy and give important direction to pedagogic practice. We advocate that further in-depth research is required into the coaching policy-practice nexus, particularly as it relates to the advancement of equity and inclusion.

Undergraduate physiotherapy students’ basic wheelchair provision knowledge: a pilot study in two universities in Colombia

TORO-HERNÁNDEZ, María Luisa
MONDRAGÓN-BARRERA, Mónica Alejandra
TORRES-NARVÁEZ, Martha Rocío
VELASCO-FORERO, Sandra Esperanza
GOLDBERG, Mary
2019

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Purpose: 

Access to an appropriate wheelchair is a human right. Only between 5–15% of people who need a wheelchair have access to one. One of the key barriers to access is the lack of appropriately trained rehabilitation professionals. The objective of this study was to evaluate basic manual wheelchair provision knowledge in final-year physiotherapy undergraduate students in two programs in Colombia.

 

Materials and methods: 

Students took the International Society of Wheelchair Professionals Wheelchair Service Provision – Basic Test which was administered online and in Spanish. The minimum score to pass the test is 70%; it assesses seven domains: Assessment; Prescription; Products; Fitting; User training; Follow-up, maintenance, and repairs; and Process.

 

Results and conclusions

One-hundred sixteen students took the test and no one passed the test. The highest median domain scores were in Assessment and Process while the lowest were in Fitting and Products. The limitations of this study include that this sample does not represent all physiotherapy programmes or students in Colombia, there may be potential errors in the Spanish translation of the outcome measure, and students encountered Internet connectivity issues during the test that may have impacted their scores. Immediate interventions are required to improve teaching and students’ learning outcomes related to basic manual wheelchair provision in these two programs. This study may serve as a foundation for future regional or national studies that assess the situation of wheelchair provision training in rehabilitation programs that will inform improvement actions. This manuscript is also available in Spanish as Supplemental Material.

Alternative spaces of failure. Disabled ‘bad boys’ in alternative further education provision

JOHNSTON, Craig
BRADFORD, Simon
2019

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This article draws from an ethnographic study of a group of school-aged disabled white working-class and self-proclaimed ‘bad boys’ in one Alternative Provision (AP) in an English further education college. These young disabled students’ disabilities contribute to the formation of their revalorised – yet stigmatised – identities. Stigma also facilitates the governance of their educational careers. The article considers how this group understands its precarious existence in and beyond AP and how these young men resist the conditions of their devaluation. Despite multiple, stigmatising experiences, the article shows how they appropriate space and (social) capital, often in tension with other students and college staff. The article suggests that there are questions about AP as an appropriate means to confer value upon young disabled students.

  • White, disabled, working-class male students are increasingly placed into Alternative Provisions intended for young people who would otherwise not receive suitable education for various reasons. The experiences of such students have received limited research attention.
  • This article is based on research conducted with young people who attend a provision located within an English further education college. The research found that these young people experience a lack of support, low trust and disregard from peers and some professionals at a crucial time in their educational careers.
  • It is important to understand disability in relation to other social differences – social class and gender, for example – as the combined impact of these in educational settings may undermine future career prospects and life chances.
  • The article emphasises the importance of education practices that develop reciprocity, trust and cooperation in improving the often oppressive circumstances young disabled people face in post-school settings.

Exposing the protected: Ghana’s disability laws and the rights of disabled people

OCRAN, Joseph
March 2019

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This paper discusses the position that disabled people in Ghana continue to experience various forms of discrimination and social exclusion despite the fact that there are several anti-discriminatory laws that are meant to protect the rights of disabled people and facilitate their participation in mainstream social, political and economic activities

 

DISABILITY & SOCIETY 2019, VOL. 34, NO. 4, 663-668

https://doi.org/10.1080/09687599.2018.1556491

Interpretative accounts of work capacity assessment policy for young adults with disabilities

STAFFORD, Lisa
MARSTON, Greg
BEATSON, Amanda
CHAMORRO-KOC, Marianella
DRENNAN, Judy
2019

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Young adults with disabilities are a specific target of the welfare-to-work policy introduced by many OECD countries over the past decade. The implementation of these policies is a significant concern for service delivery organisations and advocates in Australia and internationally due to complex intersecting structural barriers that persist for many young adults with disabilities. A particular focus of this article is work capacity assessments. Drawing on socio-political theories and interpretive policy analysis, the 22 in-depth interviews with personnel from service delivery organisations and advocacy organisations reveal how the deemed capacity to work process is not only interpreted as flawed, but the current policy approach disables young adults, perpetuates stigma, and creates division between service users and service providers. The accounts reinforce the need to contest such assessments and instead turn towards a rights-based capability approach permitting young adults with disability self-determination over their education-to-employment pathway.

The ‘compliant’, the ‘pacified’ and the ‘rebel’: experiences with Swiss disability insurance

PIECEK, Monika
TABIN, Jean-Pierre
PERRIN, Céline
PROBST, Isabelle
2019

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Switzerland’s social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. What stances do individuals who experience the implementation of these policies adopt? What kind of tests are they subjected to? How can we explain the posture they adopt – be it ‘compliant’, ‘pacified’ or ‘rebellious’ – when facing the (re)assignations of their identity and professional status? Drawing on interviews conducted with individuals who have recently been involved in programmes set up by Swiss disability insurance, we highlight their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance’s interventions.

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

MALLI, Melina Aikaterini
SAMS, Lara
FORRESTER-JONES, Rachel
MURPHY, Glynis
HENWOOD, Melanie
2018

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The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learn- ing disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well- being both of people with LD and their informal carers. Individuals with LD have lost social support and are experi- encing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for fur- ther discourse and research on the effects of austerity on people with LD and their family carers.

Governmentality of disability in the context of lifelong learning in European Union policy

KAUPPILA, Aarno
KINNARI, Heikki
NIEMI, Anna-Maija
2018

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The possibility to participate in education and lifelong learning has been introduced in EU disability policy in recent decades as one of the key means to improve the socioeconomic position of disabled persons. Simultaneously, lifelong learning has been developed as the defining concept of EU education policy to increase social cohesion and economic competitiveness. However, the education, employment rate and socioeconomic status of disabled persons have remained far below the EU average. In this article, we theo- rize governmentality to explore (1) how EU lifelong learning and disability policy discourses constitute and govern disabled persons and (2) how disabled persons are positioned in the policy dis- courses. The data consist of the most relevant EU policy documents concerning lifelong learning and disability policy in the twenty-first century. We argue that the policies constitute and govern disabled persons as a group who do not fulfil the premises set for the lifelong learner, and that consequently, policy dis- courses marginalize disabled persons instead.

Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers

BJORK BRAMBERG, Elisabeth
JENSEN, Irene
KWAK, Lydia
October 2018

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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.

 

Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.

 

Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.

 

Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.

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