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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.

The outcomes of individualized housing for people with disability and complex needs: a scoping review

OLIVER, Stacey
Gosden-Kaye, Emily Z
WINKLER, Dianne
DOUGLAS, Jacinta M
2020

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PURPOSE: Worldwide, disability systems are moving away from congregated living towards individualized models of housing. Individualized housing aims to provide choice regarding living arrangements and the option to live in houses in the community, just like people without disability. The purpose of this scoping review was to determine what is currently known about outcomes associated with individualized housing for adults with disability and complex needs.

 

METHODS: Five databases were systematically searched to find studies that reported on outcomes associated with individualized housing for adults (aged 18–65 years) with disability and complex needs.

 

RESULTS: Individualized housing was positively associated with human rights (i.e., self-determination, choice and autonomy) outcomes. Individualized housing also demonstrated favourable outcomes in regards to domestic tasks, social relationships, challenging behaviour and mood. However, outcomes regarding adaptive behaviour, self-care, scheduled activities and safety showed no difference, or less favourable results, when compared to group homes.

 

CONCLUSIONS: The literature indicates that individualized housing has favourable outcomes for people with disability, particularly for human rights. Quality formal and informal supports were identified as important for positive outcomes in individualized housing. Future research should use clear and consistent terminology and longitudinal research methods to investigate individualized housing outcomes for people with disability.

Inclusion and education: All means all. Global Education Monitoring (GEM) report 2020

GLOBAL EDUCATION MONITORING REPORT TEAM
June 2020

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The 2020 GEM Report assesses progress towards Sustainable Development Goal 4 (SDG 4) on education and its ten targets, as well as other related education targets in the SDG agenda. The Report also addresses inclusion in education, drawing attention to all those excluded from education, because of background or ability. The Report is motivated by the explicit reference to inclusion in the 2015 Incheon Declaration, and the call to ensure an inclusive and equitable quality education in the formulation of SDG 4, the global goal for education. It reminds us that, no matter what argument may be built to the contrary, we have a moral imperative to ensure every child has a right to an appropriate education of high quality.

The Report also explores the challenges holding us back from achieving this vision and demonstrates concrete policy examples from countries managing to tackle them with success. These include differing understandings of the word inclusion, lack of teacher support, absence of data on those excluded from education, inappropriate infrastructure, persistence of parallel systems and special schools, lack of political will and community support, untargeted finance, uncoordinated governance, multiple but inconsistent laws, and policies that are not being followed through.

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.

Inclusion Works Kenya 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 Kenya?”. 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 Kenya, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Kenya. 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.

Inclusion Works Bangladesh Situational Analysis

THOMPSON, Stephen
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 Bangladesh?”. 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 Bangladesh, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This situational analysis (SITAN) synthesises the most recent existing literature and evidence (drawing on government and non-government sources available online) about Bangladesh generally and on factors relating to persons with disabilities involvement in formal employment.

 

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.

Inclusion Works Nigeria Situational Analysis

THOMPSON, Stephen
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 Nigeria?”. 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 Nigeria, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships.

 

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.

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.

Learning Needs Assessment Report: Skills for impact - Rohingya Humanitarian crisis response, Bangladesh Local Humanitarian Aid Workers

AHSANUL ISLAM, Suman
et al
June 2020

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The Rohingya humanitarian crisis response in Cox’s Bazar (CXB) is a fairly new and complex experience for the humanitarian aid workers in Bangladesh. Aid workers are responsible for responding effectively in a very demanding context and acquire certain skills and competencies to adapt to the extreme workload. Since the current response in CXB began in 2017, local humanitarian aid workers (LHAWs) have gathered tremendous amount of learnings and experiences.

 

The objective of this LNA is to outline the knowledge, skills, capacity gaps and learning needs of LHAWs working in CXB. 

 

This LNA focuses on understanding LHAWs’ skills, knowledge and behaviour - both operational & technical. It analyses individuals' ability to contribute and implement response plans and respond effectively to the humanitarian crisis. Analysis focuses on understanding LHAWs’ capacity in addressing the needs of specific beneficiary groups such as children, women & girls, people with disability (PwD), elderly and people with chronic health issues. Quantitative and qualitative data was collected in November 2019.

 

Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Loneliness in life stories by people with disabilities

TARVAINEN, Merja
2020

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This study investigates loneliness in life stories by people with disabilities. By approaching loneliness from a relational perspective, this study attempts to illustrate how loneliness and disability are intertwined in the life course. The research question was as follows: How do people with disabilities understand loneliness in their life stories? Life story data ‘Life of Disabled Persons in Finland 2013–2014’ was analysed with a narrative life course approach. Loneliness was narrated in accordance with normative life course expectations. People with disabilities narrated loneliness as unbelonging in childhood, disjointed youth and disaffiliation to normative institutions in adulthood. This study suggests that relation between loneliness and disability concern the conditions of inclusion that is the conditions of living and telling.

  • Loneliness involves both unwanted emotions and social isolation. 
  • In many societies, both loneliness and disability bear a stigma. This so-called double stigma affects the lives of people with disabilities.
  • This study explores loneliness and disability in life stories by people with disabilities in Finland from a life course perspective. Although scholars have widely studied loneliness in Finland, they have not studied loneliness in people with disabilities in any great depth.
  • Loneliness in life stories by people with disabilities was narrated in relation to a sense of bodily difference and occurred as a disconnection from a socially ‘standard’ life course. Loneliness was located within three main phases: childhood, youth and adulthood. Negative attitudes towards disability feed social isolation and emotional loneliness.
  • Further research on disability and loneliness throughout the life course as well as more discussion about the conditions of inclusion and the emotional patterns of social relations are needed.

Significant challenges when introducing care robots in Swedish elder care

JOHANSSON-PAJALA, Rose-Marie
GUSTAFSSON, Christine
2020

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Introduction: 

Care robots are machines, operating partly or completely autonomously, that are intended to assist older people and their caregivers. Care robots are seen as one part of the solution to the aging population, allowing fewer professional caregivers to provide the necessary assistance and care. Despite the potential benefits, the dissemination of care robots, and welfare technology in general, is limited in Swedish elder care.

 

Purpose: 

To explore the challenges of introducing welfare technology, particularly care robots, in elder care.

 

Materials and methods:

 Twenty-one individual interviews with key actors at the societal level, analysed by thematic analysis.

 

Results: 

The challenges, from the societal actors’ perspectives, were related to; the beliefs in technology, attitudes, ethics, collaboration, and the need for knowledge and skills regarding care robots (individual and group challenges). Challenges of a national character were: national governance, infrastructure, laws and regulations, economics, and procurement (systemic and societal challenges). In addition, the necessary preconditions for successful introduction were revealed as: the utility of the technology, implementation, evaluation and safety, security, and integrity (preconditional challenges).

 

Conclusions: 

The introduction of care robots in elder care services seems to be more challenging than that of welfare technology in general, given the context and prevailing attitudes and preconceptions about robotics. Significant challenges need to be managed, at all levels of the society, before care robots can become an integral part of daily care and assist older people and their caregivers in activities and rehabilitation.

Aesthetics and the perceived stigma of assistive technology for visual impairment

DOS SANTOS, Aline Darc Piculo
FERRARI, Ana Lya Moya
MEDOLA, Fausto Orsi
SANDNES, Frode Eika
2020

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Purpose: 

The aim of this study was to identify factors that influence the perceived stigma of two assistive devices for visual impairment, namely the white cane and smart glasses.

 

Method: 

Face-to-face semi-structured interviews with eight European students were conducted to probe their experiences and knowledge related to disability, assistive technology, visual impairment, as well as handheld and wearable devices.

 

Results: 

Close relationships with disabled people seems to have a positive influence on participants perceptions about stigma, disability, and assistive technology. Academic background seems to not have any influence. The aesthetics of assistive devices was observed as an important factor that influences the adoption or abandonment of the device.

 

Conclusion: 

Device without negative symbolism but with modern aesthetics (smart glasses) were positively accepted by the participants than the device with traditional aesthetics and symbolisms of visual impairment (white cane). Designers should, therefore, consider aesthetics in addition to functionality in order to avoid the perceived stigma, thereby reducing the chances of device abandonment.

Introduction: disability, partnership, and family across time and space

VIKSTRÖM, Lotta
SHAH, Sonali
JANSSENS, Angélique
2020

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Notions of family life and romantic partnership, like notions of disability, have been culturally constructed and socially produced over historical time, and our understandings of these notions are being continually challenged and re-negotiated across time and space. Policies, institutions, and cultural practices across the globe have brought about changes to the construction of the family and to the rights and inclusion of disabled people in private and public life. This special issue brings together a collection of studies from different countries and time periods to explore the interplay between disability, romantic partnerships, and family life across the individual lifetime and between generations. With this interdisciplinary collection, we seek to merge disability research and research on family and partnerships through a life course lens. This offers unique insights and opportunities to interconnect his- torical and cultural location and changing social institutions with individual and family experiences. This introduction presents the eight studies in the collection and discusses them within a life course frame that views disabled people’s roles as partners, spouses, and members of a family. In so doing, it engages in an analysis of (dis)similarities concerning how family dynamics, romantic relationships, and disability have developed over time and in different spaces.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

HULST, Raquel Y
VOORMAN, Jeanine M
PILLEN, Sigrid
KETELAAR. Marjolijn
VISSER-MEILY Johanna M A
VERSCHUREN, Olaf
June 2020

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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

 

Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

 

Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

 

Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

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