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Lives turned upside down in COVID-19 times: exploring disabled people's experiences in 5 low-and-middle income countries using narrative interviews

WICKENDEN, Mary
SHAW, Jackie
THOMPSON, Stephen
ROHWERDER, Brigitte
2021

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This article explores COVID-19 related experiences of disabled people in Bangladesh, Kenya, Nigeria, Nepal and Uganda. Narrative interviews generated storied responses, focussing on respondents' priorities, which enabled us to hear what was most significant for them and their families. 143 interviews were conducted online or by phone by 7 local researchers (3 disabled), with appropriate inclusive support. Nearly everyone was interviewed twice to capture the progression of impacts over time. The data was analysed thematically through a virtual participatory approach. An overarching 'subjective' theme of feelings experienced by the participants was labelled 'destabilisation, disorientation and uncertainty'. We also identified 'concrete' or material impacts. People experienced various dilemmas such as choosing between securing food and keeping safe, and tensions between receiving support and feeling increased vulnerability or dependence, with interplay between the emotions of fear, loss and hope. We found both the concept of liminality and grief models productive in understanding the progression of participants' experiences. Disabled people reported the same feelings, difficulties and impacts as others, reported in other literature, but often their pre-existing disadvantages have been exacerbated by the pandemic, including poverty, gender and impairment related stresses and discrimination, inaccessible services or relief, and exclusion from government initiatives.

Disability Inclusive Development - Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Nepal Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nepal?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nepal. It will be helpful for anyone interested in disability inclusion in Nepal, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Tanzania Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Tanzania?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Tanzania. It will be helpful for anyone interested in disability inclusion in Tanzania, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.

Disability Inclusive Development - Jordan Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Jordan?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Jordan. It will be helpful for anyone interested in disability inclusion in Jordan, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Bangladesh?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Bangladesh. It will be helpful for anyone interested in disability inclusion in Bangladesh, especially in relation to stigma, employment, education, health, and humanitarian issues.

Disability Inclusive Development - Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Nigeria?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Nigeria. It will be helpful for anyone interested in disability inclusion in Nigeria, especially in relation to stigma, employment, education, health, and humanitarian issues.

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.

 

Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.

 

Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.

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.

Disability Inclusive Development Good Practices: Level of Commitment to Core Concepts of Human Rights

HENDERSON, Cheryl
MANNAN, Hasheem
POWER, Jessica
2017

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Aim: Good practices have been documented by International Non-Governmental Organisations (INGOs) to promote disability inclusive development and encourage the replication or scaling up of good practices that use rights based approaches. This study aimed to investigate the extent to which Core Concepts of human rights are illustrated in disability inclusive development good practices related to health.

 

Methods: This study analysed case studies of disability inclusive development good practices focusing on health that are available in the public domain using EquiFrame, an established content analysis framework in benchmarking health and social policies.

 

Results: A total of 42 health related good practices were identified from 3 different INGOs working in the field of disability inclusive development. The highest occurring human rights Core Concepts were; access 55%, individualised services 48%, capacity building 45% and participation 38%. The Core Concepts with the lowest levels of commitment were; autonomy 3%, cultural responsiveness 3%, accountability 3%, and efficiency 3%. Privacy and autonomy were not mentioned at all. The quality of reporting of the core concepts of human rights was low as they did not state specific programme actions or intentions to monitor Core Concepts.

 

Conclusion: Level of commitment to Core Concept coverage and quality of reporting was low. EquiFrame was successfully extended to analyse disability inclusive development good practices focusing on health. Its use in further analysis of inclusive good practice is advised.

 

Implications: These results can be used for advocacy in disability inclusive development and to guide programme staff training and documentation of disability inclusive development good practices.

Inequalities in access to health care for people with disabilities in Chile: the limits of universal health coverage

ROTAROU, Elena S
SAKELLARIOU, Dikaios
2017

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We analysed cross-sectional data collected as part of the National Socioeconomic Characterisation Survey (2013) in Chile, in order to explore if there are differences in access to health care between adult Chileans with and without disability. The study included 7459 Chilean adults with disability and 68,695 people without disability. Logistic regressions were performed in order to determine the adjusted odds ratios for the associated variables. We found that despite universal health coverage, Chileans with disabilities are more likely to report worse access to health care, even when controlling for socio-economic and demographic variables, including age, gender and income. Specifically, they are more likely to face greater difficulty arriving at a health facility, obtaining a doctor’s appointment, being attended to in a health facility, paying for treatment due to cost, and obtaining necessary medicine. Both people with and without disability are more likely to face difficulties in accessing health services if they are affiliated with the public health provider, an indication of the economic factors at play in accessing health care. This study shows that universal health coverage does not always lead to accessibility of health services and underlines the disadvantaged position of disabled people in Chile in accessing health services. While efforts have been made recently to improve equity in health care access, disability in Chile poses an additional burden on people’s access to health care, emphasising the necessity for policy to address this perpetual cycle of disadvantage for disabled people.

Identifying Rehabilitation Workforce Strengths, Concerns and Needs: A Case Study from the Pacific Islands

GARGETT, Alexandra Lewis
LLEWELLYN, Gwynnyth
SHORT, Stephanie
KLEINITZ, Pauline
2016

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Purpose: This exploratory case study was undertaken to inform capacity development of the rehabilitation workforce in member nations of the Pacific Islands Forum (PIF).

 

Method: Participants at the 1st Pacific CBR Forum in June 2012 were key informants for this study. They comprised the disability focal points from government departments in each of the 14 countries, representatives of DPOs and disability service providers. The study was conducted in 3 phases:  a template to gather data on rehabilitation workers; key informant interviews; and, stakeholder workshops to identify strengths and needs of the rehabilitation workforce in the Pacific.

 

Results: The detailed case study findings suggest two critical drivers for rehabilitation health workforce development in the Pacific context. The first is leadership and commitment from government to serve rehabilitation needs in the community. The second is the urgent need to find alternative ways to service the demand for rehabilitation services as it is highly unlikely that the supply of specialist personnel will be adequate.

 

Conclusions: A multi-sectoral view of health and social service systems is a key element for the development of a rehabilitation health workforce. The endorsement of the WHO Global Disability Action Plan by the World Health Assembly in 2014 further enhances the opportunity to work collaboratively across sectors in Pacific countries. Specialist personnel are and will remain in short supply. There is opportunity for the region to lead the development of alternate workforce mechanisms through the training and supply of skilled community-based rehabilitation personnel.

Towards a Core Set of Clinical Skills for Health-Related Community Based Rehabilitation in Low and Middle Income Countries

O’Dowd, Jessica
MacLachlan, Malcolm
Khasnabis, Chapal
Geiser, Priscille
2015

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Purpose: This research aims to identify a core set of clinical skills for working in a Community Based Rehabilitation (CBR) setting, and to discuss whether they are appropriate for task shifting to a new or an alternative cadre of rehabilitation workers.

 

Methods: The study focussed on work activities relating to the health component of the CBR Matrix. 40 health professionals working in CBR in Low and Middle Income Countries (LMIC) were surveyed to discover the clinical skills that were used most frequently during the past 3 months and to determine which of these skills were deemed most important in a CBR setting.

 

Results: A core set of clinical skills for health-related CBR work in LMIC were identified: advocacy and sensitisation; assessment, monitoring and reporting; behavioural and cognitive interventions; collaboration and referral; communication; continuing professional development; education; gait training; group work; home-based rehabilitation; manual therapy; neurofacilitation techniques; positioning; prescription of strengthening exercises; prescription of stretching programmes; provision of aids, assistive devices and technologies; psychosocial support; recreational therapy; self-care; sensory interventions; supervision; upper body rehabilitation; vocational rehabilitation and working with families.

 

Conclusions: It is possible to identify a core set of health-related CBR skills. These may be considered in the development of training programmes for new or alternative cadres of CBR workers, using a task-shifting model including appropriate support, supervision and referral mechanisms.

Implications: Further research is required to establish the generalisability of the skills sets identified here, both across contexts and different client groups and their needs. The identification of core sets of skills for other areas of the CBR Matrix - livelihood, social, empowerment and education – could similarly facilitate access to these domains for people with disabilities.

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