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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.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Engaging girls and women with disabilities in the global South: Beyond cultural and geopolitical generalizations

NGUYEN, Xuan Thuy
STIENSTRA, Deborah
2021

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This article invites readers to engage with girls and women with disabilities in the global South. It challenges the epistemological domination of Western disability studies in Southern bodies and contexts, and provides one specific way to read the intersection between disability, gender, and ethnicity in the context of Vietnam. Drawing on the politics of engagement developed within the Transforming Disability Knowledge, Research, and Activism project, we argue for recognizing the lingering impacts of colonialism and imperialism in producing disability and impairment in the South, while suggesting new ways of engaging with disabled girls and women through the use of inclusive, decolonial, and participatory methods.

Accessible construction toolkit

INSTITUTE OF MIGRATION (IOM) IRAQ
March 2021

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In October 2020, IOM Iraq commissioned the development of an accessibility toolkit for IOM Iraq built structures. This toolkit follows the Iraq “Building requirement code for people with special needs” on construction and accessibility and is a companion to the RRU Construction Manual: Best practices in construction and rehabilitation of community infrastructure. The RRU construction team constructs a variety of buildings including schools, health facilities and community centers. This toolkit is a resource to enable a strengthened approach to accessibility of future structures, and to enable a diverse range of community members to benefit from IOM Iraq’s construction and programming

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.

Experiences of Reciprocal Caring Among AdultsWith an Intellectual Disability Caring for an OlderFamily Member

TRUESDALE, Maria
TAGGART, Laurence
RYAN, Assumpta
McCONKEY, Roy
2021

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Background: Internationally, many children and adults with intellectual disabilities are continually being supported by their family members to live within their family home. However, as a consequence of the ageing process some family members can struggle to continue to care because of their failing physical and/or mental ill-health. This has resulted in a shift in the parameters of the rela-tionship for some adults with intellectual disabilities with their formerly dependent role evolving into a caregiving one. This had become known as “reciprocity” or “mutual support.” Limited information exists about these “hidden carers” and what services are available to support them.

 

Aim: This article explored the lived experiences of nine adults with intellectual disabilities who provided emotional and tangible support to an ageing family member.


Method: A qualitative methodology was employed using semi-structured interviews. Nine participants with mild-to-moderate intellectual disabilities were interviewed within one region of the United Kingdom. The interviews were analyzed using thematic analysis.

 

Findings: Five themes emerged within these narrative accounts: natural transition to caring; the health needs of the ageing familymember; support; impact of caregiving and future planning.

 

Discussion: The needs of these unknown hidden carers, and also ageing family members, are immediate and urgent. Policy makers, commissioners and service providers need to examine the type of “in-house” support provided to these new carers if they are to continue living within their family home with their ageing family member, who will also need additional support. Neglecting both cohorts will lead to greater costs to services in the longer term and seriously threaten the quality of life of people with intellectual disabilities and their family carers.

Sommet Mondial sur le Handicap +2 Ans: Les Progrès dans la Mise en Oeuvre des Engagements [World Summit on Disability +2 Years: Progress in the Implementation of the Commitments]

GLOBAL DISABILITY SUMMIT
March 2021

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The 2018 World Disability Summit, held in London, was intended to spark a new wave in the disability rights movement.

The 2-year GDS + report presents critical information on the progress made by national governments, multilateral agencies, donors, foundations, and private sector and civil society organizations on the nearly 1,000 commitments adopted in 2018.
 

Do personal assistance activities promote participation in society for persons with disabilities in Sweden? A five-year longitudinal study

VON GRANITZ, Heléne
SONNANDER, Karin
REINE, Ieva
WINBLAD, Ulrika
2021

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Purpose: To explore whether the personal assistance (PA) activities provided by the Swedish Act concern- ing Support and Service for Persons with Certain Functional Impairment in 2010 and 2015 promote par- ticipation in society according to Article 19 of the United Nations’ Convention on the Rights of Persons with Disabilities (UNCRPD).

 

Methods: Register data and data from two questionnaires were used (N1⁄42565). Descriptive statistics and chi-square (McNemar’s test) were used to describe the basic features of the data. Mixed binominal logistic regression was used to examine correlation between gender and hours of PA between 2010 and 2015.

 

Results: Despite an increase in the number of PA hours, more care activities and a reduction of most PA activities representing an active life were found. The result was especially evident for women, older peo- ple, and for a particular person category.


Conclusions: The results offer evidence of a shift to a medical model and indicate a risk of social exclu- sion due to fewer activities representing an active life. An increase on average of 16h of PA over the period studied does not guarantee access to an active life and may indicate a marginal utility. The noted decline of PA for participation in society enhances the importance of monitoring content aspects to fulfil Article 19 of the UNCRPD.

‘It’s been taken away’: an experience of a disappearing dyslexia diagnosis

CAMERON, Harriet
2021

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This research explores the experiences of Beth, a university student in the UK, as she comes to be labelled as ‘dyslexic’, and as she has her diagnosis taken away. Through use of Interpretative Phenomenological Analysis (IPA) and discourse analysis, the research seeks to understand how Beth made sense of these experiences, and to explore the discursive ‘life’ of dyslexia within this sense-making. The discussion in this paper proceeds chronologically through Beth’s story, from ‘struggle’, to ‘legitimation’ to ‘derogation’, and concludes with a call to recognise the role of diagnosis in the field of special educational needs (SEN) from a social constructionist and relational perspective.

What evidence is there for the benefits of inclusive education for children without disabilities? - Evidence brief

STEFFEN, Liändrie
March 2021

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Inclusive education offers a variety of potential academic and social benefits for all students; with as well as without disabilities. However, a common concern among the non-disabled population is the potential negative impacts the inclusion of students with disabilities might have on their non-disabled classmates.  These negative beliefs and attitudes by parents and teachers can translate into a lack of implementation of inclusive education. There is substantial evidence for the benefits of inclusion for students with disabilities, however, there is very little evidence on the impact it has on non-disabled students, particularly in LMICs compared to HICs. This evidence brief explores evidence-based recommendations on the benefits of inclusive education for children without disabilities and how this issue shapes inclusive education implementation in LMICs.

The effective engagement toolkit

LEONARD CHESHIRE
March 2021

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The engagement toolkit is a practical resource guide for anyone committed to ensuring the voice of disabled people is front and centre of their work.

Starting with influencing approaches on policy, campaigning and public affairs engagement, the toolkit provides:

• Step by step guidance on entry points for developing productive and mutually beneficial relationships with the disability community.
• Quick guides on key disability movement context, approaches and best practice
• A breakdown of key elements of the Influencing Cycle.
• Examples of where good practice has worked well.
• Links to in-depth information for further learning.

The Role of the Family Network When Raising a Child with a Disability in Low- and Middle-Income Countries

BIZZEGO, Andrea
LIM, Mengyu
DIMITRIOU, Dagmara
ESPOSITO, Gianluca
2021

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Family plays a role in supporting child development, by facilitating caregiving and other parental practices. Low- and middle-income families typically have a complex structure with many relatives living together in the same household. The role of family and family complexity in the caregiving of children with disabilities is still unknown. In this study, we use data from N = 22,405 children with severe (N = 876) and mild or no disability (N = 21,529) from a large dataset collected in the 2005–2007 Multiple Indicator Cluster Survey. In particular, we adopt PageRank, a well-known algorithm used by search engines, to quantify the importance of each child in the family network. We then analyze the level of caregiving the child received in light of the child’s importance and developmental status, using a generalized linear model. Results show a main effect of child’s importance and of the interaction of child’s importance and developmental status. Post hoc analysis reveals that higher child importance is associated with a better caregiving outcome only for children with mild or no disability.

COVID-19 in South Asia: State practices, responses and the experiences of persons with disability within the region

MEHROTRA, Nilika
SOLDATIC, Karen
2021

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An introduction into South Asia looking at the pandemic who people are struggling with in 2020. The DGS has aimed to first identify and acknowledge the diversity of disability experiences in the Global South and, second, make these experiences readily available and accessible to disabled people and their communities in the regions where the contributors themselves are from. In fact, in undertaking this special issue as editors, we would like to recognize the incredible persistence of our contributors to continue to work with us throughout the development of the papers, alongside acknowledging the many original contributors who were also unable to accept our invitation to participate because of the covid19 pandemic impacts upon every aspect of their lives.

When differences are made into likenesses: the normative documentation and assessment culture of the preschool

KARLSUDD, Peter
2021

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This article is based on studies carried out within the Young children’s learning research education programme. This undertaking involved five graduate students, all recruited from the Swedish preschool system. The licentiate thesis makes up the final product of their education programme, and the focus of each candidate’s licentiate thesis was preschool-level documentation. Using the results of all five theses, a re-analysis was conducted with the concept of normality as the common starting point. The purpose was to investigate whether documentation and assessment can change the view of normality in preschools, and furthermore, what consequences there may be for preschool activity. ‘The narrow preschool and the wide preschool’ is the model used to support the analysis, which is a model used in previous studies to review and discuss educational choices and conditions in the school system. Results of the present investigation show that the documents and assessments performed in preschool have a strong focus on the individual child and a traditional, school-oriented learning is highly valued. The documentation and assessment practices that take place now in our preschools, therefore, most likely influence the preschool view of normality and restrict the acceptance of differences.

Emergent Disability voices on Social Media during COVID -19 times

MEHROTRA, Nilika
2021

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Persons with disabilities are invisible and almost silent in the Indian media. This paper examines the emergence of articulate expressions of persons with disabilities (pwd) in the social media over the months March to June 2020 during COVID Lockdown. While technology has been seen as a great leveller for persons with disabilities, the digital divide, however, remains very real for masses of disabled persons, whereby it is largely the educated middle class who have access to internet facilities and presence on social media. This paper draws from observation and analysis of posts on Facebook by different categories of persons with disabilities. There appear to be a number of discourses emerging and imageries running almost parallel. Accessibility and support appear to be very important issues especially in terms of access to domestic workers, regular medical checkups, and procuring daily provisions as well as access to online teaching. On the other hand, little concern is being paid to the huge humanitarian crisis of returnee workers from cities to villages. Interestingly, disabled persons appeared more connected, participating in discussions and Webinars and voicing out their experiences with greater clarity and also analysing the COVID situation through Disability Studies (DS) perspectives.

Uncertain Personhood: Notes on Ageing and Disability in Guwahati During COVID 19

BEZBARUAH, Vaijayanti
2021

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The circumstantial understanding of the ‘normal’, ushered in by the spread of COVID 19, has been the practice of ‘social distancing’. Exercising this ‘new normal’ has been a challenge in general for society. However, it is particularly important to recognize the psycho-social impact and analyse it through the lens of ageing in relation to experiences of disability. This paper therefore attempts to explore the experiences of uncertainties in the light of ageing with disabilities, pronounced during a time of crisis, leading to social distress. With the help of telephonic conversations, the paper discusses some of the stories of people living in Guwahati, in the age-group of 70 to 90, drawing on an intersectional understanding of personhood, social suffering, and symbolic disability. It is also an attempt to look into the aspect of wellbeing (physical, psychological and emotional) of the elderly amidst disabilities, while stepping into unfamiliar social boundaries of ambiguity, that further disable the elderly in terms of the sudden fading of the regular support structures and systematic foundations of the ‘social’ once known to them.

Mental health of LGBTIQ+ people in India during the COVID 19 pandemic: risks, access, lessons

TENNETI, Suchaita
2021

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The COVID-19 pandemic and the associated containment measures have resulted in a mental health crisis globally. Marginalised populations have been disproportionately affected during the pandemic with an aggravation of existing inequalities, and this has increased the risks to their mental health. The LGBTIQ+ population is among those marginalised whose lives have been rendered even more precarious than before by the pandemic. This paper explores some of the main risks to the mental health of LGBTIQ+ people in India, the advice being given to them by mental health professionals and activists, and need for queer revisionings of uncertainty, the concept of a future and individualism.

Psychosocial Consequences of COVID-19 on Persons with Visual Impairments

NAYAR, Mahima
JUVVA, Srilatha
LAKSHMAN, Chitra
2021

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The ongoing pandemic situation has disrupted lives globally. These disruptions are embodied in gender, social location, ethnicity and in the body. Public health facilities, accessibility of urban infrastructure, support services for persons with disability, educational accessibility in cities prior to the pandemic have influenced the manner in which disabled people are able to adapt to the current situation. This paper presents the experiences of young people living with visual impairments who reside in an urban low-income community in India. It explores the unique challenges such as the further reduction in accessibility to health and educational facilities that they are facing and the manner in which their carefully structured everyday lives have changed. The narratives also describe the manner in which they are coping with the public health disaster in addition to preparing for the new ‘norms’ that people living with visual impairments are required to navigate as an outcome of the pandemic. The paper gives voice to their needs and requirements in this situation, and in turn, aims to inform policy responses through first person accounts. 

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