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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.

COVID-19 and State Responses in Pakistan’s Policy towards Persons with Disabilities

ORAKZAI, Saira Bano
2021

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The outbreak of COVID-19 has initiated debate in the world about the response mechanism towards different communities in society. Pandemics have a long history in human societies, changing not only human behavior but also world politics. The Russian flu of 1889, the Spanish flu of 1918, the polio pandemic of 1949, H2N2 virus, 1956, HIV/AIDS 1981, Swine flu 2001, SARS 2002 among others have caused millions of deaths in contemporary recorded history. This paper examines Pakistan’s response mechanisms for persons with disabilities through an analysis of relevant policy documents, UN guidelines and content analysis of key speeches by the Prime Minister Imran Khan, interviews and initiatives taken by the government. The paper concludes that in the absence of any definitive policy for persons with disabilities during COVID19, there has been a general ignorance and apathy towards the way persons with disabilities were given care or in dealing with them during the lockdown situation. As the COVID-19 second wave started in different parts of the world, it is time for the government to take substantive measures to ease problems faced by persons with disabilities. 

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.

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.

How do we improve access to healthcare for people with disabilities?

HUNT, Xanthe
August 2019

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Gaining access to healthcare is often a challenge for people with disabilities in low- and middle-income countries. Part of this has to do with a general dearth of healthcare services in low-resource settings. But part of this difficulty has to do with structural, attitudinal, economic and social barriers to participation and healthcare which affect people with disabilities more than people without disabilities. This lack of access to healthcare is a problem because, in general, people with disabilities may need to access healthcare more frequently than people without disabilities. Full and equitable access to quality healthcare is a human right, and an important imperative of the global agenda. This evidence brief summarises what we know about how to improve access to healthcare for people with disabilities in low-resource settings.

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.

What is good personal assistance made of? Results of a European survey

MLADENOV, Teodor
2019

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This article presents the results of a survey on personal assistance (PA) for disabled people, conducted among PA users and members of the independent living movement in Europe. The survey was developed and implemented in the spirit of emancipatory disability research, and was informed by the social model of disability and the independent living philosophy. Participants were asked to assess a series of characteristics of PA in terms of their impact on users’ choice and control. Their responses help identify which characteristics of PA are considered to be enablers of choice and control, which characteristics are perceived as barriers and which characteristics elicit disagreement or lack of consensus among PA users and members of the independent living movement in Europe. Plans for using the results of the survey to develop a tool for evaluating PA schemes are also discussed.

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.

An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory

St GUILLAUME, Louise
THILL, Cate
2018

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In Australia, in the last decade, there have been significant policy changes to income support payments for people with a disability and Indigenous people. These policy reforms intersect in the experience of Indigenous people with a partial capacity to work in the Northern Territory who are subject to compulsory income management if classified as long-term welfare payment recipients. This intersection is overlooked in existing research and government policy. In this article, we apply intersectionality and Southern disability theory as frameworks to analyse how Indigenous people with a partial capacity to work (PCW) in the Northern Territory are governed under compulsory income management. Whilst the program is theoretically race and ability neutral, in practice it targets specific categories of people because it fails to address the structural and cultural barriers experienced by Indigenous people with a disability and reinscribes disabling and colonising technologies of population control.

 

Disability and the Global South, 2018, Vol.5, No. 2

The nation’s body: disability and deviance in the writings of Adolf Hitler

BENGTSSON, Staffan
2018

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This article takes its starting point in the Nazi ideology as it appears in the writings of Adolf Hitler, and discusses how disability and the body can be understood in the context of Mein Kampf. The article underlines how disability and bodily infirmities, alongside race, featured significantly in Hitler’s demagogic message. Although the overall image of disability was related to a sense of threat – and a culture gone wrong – Mein Kampf also contains a mixed interpretation of disability as a phenomenon, in which different and opposing disability narratives took part in the construction and the image of the body as a national property.

Entering the SDG era: What do Fijians prioritise as indicators of disability-inclusive education?

SPRUNT, Beth
DEPPELER, Joanne
RAVULO, Kitione
TINAIVUNIVALU, Savaira
SHARMA, Umesh
2017

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Sustainable Development Goal (SDG) 4 is to ‘Ensure inclusive and equitable quality education and promote lifelong learning opportunities for all’ and the targets and indicators for SDG 4 emphasise the importance of measuring outcomes for children with disabilities (United Nations, 2015b). This paper reports on findings from qualitative research investigating Fijian stakeholders’ priorities for measuring success of efforts within a contextually and culturally meaningful process of disabilityinclusive education; that is, achievement of SDG 4 for children with disabilities. The priorities are presented in light of the specific challenges in Fiji to fulfilling this goal. The research presented in this paper is one part of a much larger mixed method study funded by the Australian aid program that aimed to develop and test indicators for the education of children with disabilities in the Pacific (Sharma et al., 2016). Fijian researchers with lived experience of disability undertook key informant interviews and focus group discussions with 28 participants. The findings include the need for or role of: an implementation plan and resourcing to ensure the national inclusive education policy is activated; improved awareness and attitudes; competent, confident and compassionate teachers; disability-specific services and assistive technology; accessible buildings and transport; and the important role of special schools. Inclusive education reform requires that Fiji incorporates and builds on existing strengths in special and inclusive education to ensure that systems and people are prepared and resourced for inclusion. The paper concludes that targets within SDG 4 are compatible with priorities within Fiji, however additional indicators are required to measure locally-prioritized changes related to barriers which need to be addressed if Fiji is to make progress towards the higher-order targets of SDG 4.

 

Disability & the Global South (DGS), 2017, Vol. 4 No. 1

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.

 

Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.

 

Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.

 

Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.

A Comparative Analysis of Institutional Capacities for Implementing Disability Policies in East African Countries: Functions of National Councils for Disability

YOKOYAMA, A
2012

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During the “African Decade of Persons with Disabilities (2000-2009)”, East African countries witnessed significant achievements, especially in the development of law, collection of statistics and in funding. However, many persons with disability are still marginalised from opportunities in education, healthcare and employment.

 

Purpose: With the pre-supposition that the lack of institutional capacities for implementing disability policies is the one major stumbling-block which hinders widespread delivery of social services to persons with disabilities in low-income countries, this study makes a comparative analysis of institutional capacities in the disability sectors of Uganda, Kenya and Tanzania.

 

Method: The research methods adopted were a literature survey and a field survey. The framework for analysis consists of: 1) capacities and functions of disability units in central governments, 2) relationships between central and local governments in the disability sector, and 3) relationships between governments and organisations of persons with disability (DPOs). Special attention is paid to the status, roles and functions of national councils for disability (NCDs), the independent statutory bodies recently established in each of the three countries, with clear authority and duties for the implementation of disability policies. The NCDs enable multi-sectoral stakeholders to be involved in the implementation of disability policies; therefore, positive relationships between the governments and DPOs are essential for the smooth functioning of the NCDs.

 

Results: While the result of the field survey in Tanzania reveals several effective approaches for the smooth operation of the NCD, further study is needed to verify whether these approaches would be applicable to other East African countries such as Kenya and Uganda.

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