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Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Persons with disabilities and their representative organisations in Iraq

March 2021

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Iraq has one of the largest populations of persons with disabilities in the world. Despite this, there has been little consultation among persons with disabilities and their representative groups by government and humanitarian and development agencies. Persons with disabilities and their representative organisations in Iraq: Barriers, challenges and priorities aims to improve the understanding of the barriers experienced by persons with disabilities, including the key challenges and priorities of their rep­resentative organizations, in order to inform humanitarian and development programming. The report is based on interviews conducted with 81 representatives of 53 Organiza­tions of persons with disabilities across 18 governorates in Iraq.

Persons with disabilities and their representative organisations in Iraq

INTERNATIONAL ORGANISATION FOR MIGRATION (IOM) IRAQ
March 2021

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Iraq has one of the largest populations of persons with disabilities in the world. Despite this, there has been little consultation among persons with disabilities and their representative groups by government and humanitarian and development agencies. Persons with disabilities and their representative organisations in Iraq: Barriers, challenges and priorities aims to improve the understanding of the barriers experienced by persons with disabilities, including the key challenges and priorities of their rep­resentative organizations, in order to inform humanitarian and development programming. The report is based on interviews conducted with 81 representatives of 53 Organiza­tions of persons with disabilities across 18 governorates in Iraq.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Individualised Funding: A Realist Analysis to Identify the Causal Factors That Facilitate Positive Outcomes

FLEMING, Padraic
McGILLOWAY, Sinead
THOMAS, Steve
2021

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There is growing interest, internationally, in empowering people with disabilities, and the United Nations have identified individualised funding as one way in which empowerment might be achieved. ‘Individualised funding’ is an umbrella term for various publicly funded support structures that provide personalised and individualised support services for people with a disability. These aim to facilitate self-direction, empowerment, independence, and self-determination. The findings of a recent mixed-methods systematic review of studies undertaken during an approximate 25-year period suggest positive effects with respect to quality of life, client satisfaction, and safety, as well as very few adverse effects, although the evidence on cost-effectiveness was inconclusive. This paper involved a re-examination of the qualitative findings of that review by employing a realist framework to explore the interplay between key contexts and mechanisms, and how these facilitate or inhibit positive outcomes associated with individualised funding and its underlying programme theory.

Inclusive practices in disaster risk management. Experiences of social actors and government entities in Latin America

HUMANITY & INCLUSION (HI)
December 2020

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Twelve inclusive practices are presented that explore the application of the inclusive approach to disaster risk management. Collecting and sharing inclusive practices is one axis of the project, “Inclusive Disaster Risk Management: An innovative approach towards inclusion of most vulnerable groups”, which aims to disseminate inclusive disaster risk management in Latin American countries in order to increase protection and resilience in high-risk groups. The project accompanies and strengthens regional, national, and local actors from the following countries: Bolivia, Chile, Colombia, Ecuador, Nicaragua, Paraguay, and Peru.

 

This regional initiative for inclusive disaster risk management is led by Humanity & Inclusion (HI), in partnership with Save the Children International Peru (SCI) and Cooperazione Internazionale Paraguay (COOPI). 

Impact of the FindMyApps program on people with mild cognitive impairment or dementia and their caregivers; an exploratory pilot randomised controlled trial

BEENTJES, Kim M
NEAL, David P
KERKHOF, Yvonne J F
BROEDER, Caroline
MOERIDJAN, Zaïnah D J
ETTEMA, Teake P
PELKMANS, Wiesje
MULLER, Majon M
GRAFF, Maud J L
DRÖES, Rose-Marie
2020

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Purpose

FindMyApps is a web-based selection-tool and errorless learning training program to help people with mild dementia/Mild Cognitive Impairment (MCI) and caregivers find user-friendly apps. In preparation of a definitive trial, the impact and feasibility of the FindMyApps intervention on self-management and engagement in meaningful activities, including social participation, was explored.

 

Materials and methods

An exploratory pilot randomised controlled trial (trial registration approval number: NL7210) with pre/post measurements was conducted with community-dwelling people with mild dementia/MCI and their caregivers (n = 59) in the Netherlands. Dyads in the experimental group (n = 28) received training to use the tablet and FindMyApps, and the errorless learning method was taught to their caregivers. Control group dyads (n = 31) received a tablet (without FindMyApps), instructions on tablet-use and links to dementia-friendly apps. Validated instruments were used to assess person with dementia’s self-management, meaningful activities and social participation, caregiver’s sense of competence and both their quality of life.

 

Results and conclusions

No statistical significant group differences on the outcomes were found. Small to moderate effect-sizes in favour of the FindMyApps group were found for self-management and social participation. Caregivers tended to have more positive care experiences. Subgroup analyses showed that people older than 70 benefitted more from FindMyApps regarding self-management and higher educated people benefitted more regarding social participation. FindMyApps is feasible for the target group and may have potential to improve self-management and social participation. For a future definitive effectiveness trial a larger sample size is recommended, as well as taking into account the possible impact of education and age.

Increasingly consulted, but not yet participating: IDA global survey report on participation of Organisations of Persons with Disabilities

INTERNATIONAL DISABILITY ALLIANCE (IDA)
November 2020

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This new report presents the findings of the first-ever global survey led by OPDs on their participation in decision making processes of governments, the UN system and funding agencies.

The IDA Global Survey is part of a strategy to hold decision-makers accountable for their commitments under Articles 4.3 and 32 of the UN Convention on the Rights of Persons with Disabilities (CRPD). Based on testimonies collected from OPDs in 165 counties, the report assesses the quality, depth, scope and relevance of the OPDs participation in programmes and policies, and offers recommendations for governments, the UN system and funding agencies.

Towards more inclusive practices: A Disability, Gender and Age Intersectional Resource

BRIGDEN, Stephanie
AHLUWALIA, Kanwal
2020

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This Disability, Gender and Age Resource aims to support staff to better understand intersectionality. An intersectional approach reminds us of the need to look deeper at the way multiple individual characteristics and societal factors intersect to compound discrimination in any given context. This resouce is split into w main sections:

 

In Section A, we introduce the concept of intersectionality, its use as a lens to understand vulnerability and the relevance of ‘context’. Section A also introduces a few critical concepts: the fact that disability, gender and age are all social constructs, the centrality of power and the need to transform unequal power relations.

 

In Section B, we provide some guidance on inclusion and bias; the need to consider the wider environment; how to work with social norms; how to understand power differently; and empowerment and participation processes.

Empowering Women with Disabilities : moving from charity to right based model

Humanity & Inclusion
2020

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HI Pakistan has recently completed a UN Women funded project ”Empowering women with disabilities (EWwD)” focusing on the social and economic empowerment of the women with disabilities. The project was implemented at Islamabad capital territory (ICT), Peshawar, Nowshera and Karachi. This project has directly benefited more than 600 women with disabilities , whereas about 30 DPOs and a number of public private departments / institutions have also been engaged and benefitted.

 

HI Pakistan collected the stories of project beneficiaries and published to highlight the impact of the project and to integrate the lesson learnt in program cycle management.

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

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

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

 

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

 

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

 

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

 

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

 

African Journal of Disability, Vol 9, 2020 

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

DEVAR, Teagan
BOBAT, Shaida
REUBEN, Shanya
July 2020

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

 

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

 

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

 

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

 

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

 

 

African Journal of Disability, Vol 9, 2020

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 - 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.

Disability inclusion, COVID-19 and adaptations to the DFID Ghana LEAP 2 programme 43

WAPLING, Lorraine
MEANEY-DAVIS, Jessie
June 2020

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This short paper provides an overview of disability inclusion considerations for adaptations to Ghana’s Livelihood Empowerment Against Poverty (LEAP) 2 social protection programme during the COVID-19 pandemic. It includes considerations for changing the payment mechanism from cash payments to mobile money as well as the necessary communications and monitoring of beneficiary feedback and safeguarding during the pandemic. The attached annex provides detailed considerations of the benefits, risks and mitigations for specific programme adaptations.

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.

Multifaceted interventions for supporting community participation among adults with disabilities

GROSS, Judith
MONROE-GULICK, Amalia
DAVIDSON-GIBBS, Debbie
NYE, Chad
June 2020

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This Campbell systematic review and meta-analysis examines the impact of multifaceted interventions on community participation outcomes for adults with disabilities, and aims to find effective components of the interventions. The review summarizes the findings from 15 reports of multifaceted interventions in five countries.

Included studies employ at least two interventions designed to address two or more participant characteristics (e.g., skill enhancement, behavior/attitude change) and/or environmental characteristics (e.g., participant interactions with people, places, or things) resulting in outcomes that provide direct access to the community (e.g., competitive employment, adult learning, housing) or are a dimension of community participation (e.g., self-determination, quality of life, social networking).

 

Campbell Systematic Reviews. 2020; 16:e1092.

https://doi. org/10.1002/cl2.1092.

Inclusive safeguarding

INTERNATIONAL DISABILITY AND DEVELOPMENT CONSORTIUM (IDDC)
April 2020

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IDDC and its members aim to promote inclusive development, which means ensuring that all people are fully included and can actively participate in development processes and activities. One area which the consortium has highlighted as an area which should be made more inclusive is the development of safeguarding policies and practices.

This report gives some background to safeguarding people with disabilities. Topics covered include: empowerment; prevention; proportionality; protection; partnership; and accountability. 

Recommendations are provided.

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