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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.

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.

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

ORAKZAI, Saira Bano
2021

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

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

Kindergarten Redshirting: Implications for Children with Disabilities

SANDS, Michelle M
MONDA-AMAYA, Lisa
MEADAN, Hedda
2021

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The purpose of this paper is to explore issues and concerns related to academic redshirting in kindergarten and to discuss implications of this practice for children with disabilities. Although parents cite a variety of reasons for redshirting their child, only limited evidence of academic or social benefit can be found. A search was conducted to identify studies relevant to academic redshirting and inclusive of children with disabilities published within the past 20 years, and 17 articles were identified related to the topic. From these articles, three central topics emerged: (a) prevalence, predictors, or parent motivations for kindergarten redshirting, (b) the impact of redshirting on academic achievement and post-secondary outcomes, and (c) the impact of this practice on a child’s behavior. While assumptions can be made based on the research conducted using a general education population, the impact of kindergarten redshirting on the success of children with disabilities is unclear due to the limited amount of research that currently exists. Implications for children with disabilities are discussed.

Women’s experiences of living with albinism in Taiwan and perspectives on reproductive decision making: A qualitative study

HUANG, Mei-Zen
CHEN, Li-Li
HUNG, Shu-Ling
PUTHUSSERY, Shuby
2020

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People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.

Living in Chains - Shackling of people with psychosocial disabilities worldwide

HUMAN RIGHTS WATCH
October 2020

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In order to show the scale and scope of shackling of people with real or perceived psychosocial disabilities worldwide, Human Rights Watch conducted a study of mental health legislation, relevant policies, and practices across 60 countries around the world.

This report includes research and testimonies collected by 16 Human Rights Watch researchers in their own countries. We worked closely with partner organizations to visit private homes and institutions in Afghanistan, Burkina Faso, Cambodia, Ghana, Indonesia, Kenya, Liberia, Mexico, Mozambique, Nigeria, Sierra Leone, Palestine, Russia, the selfdeclared independent state of Somaliland, South Sudan, and Yemen. Human Rights Watch researchers interviewed more than 350 people with psychosocial disabilities, including those who were shackled at the time of research or had been shackled at least once in their lives, and more than 430 family members, caregivers or staff working in institutions, psychiatrists, psychologists, nurses and other mental health professionals, faith healers, lawyers, government officials, representatives of local nongovernmental organizations (NGOs), including organizations of persons with disabilities, and disability rights advocates. The testimonies were collected between August 2018 and September 2020 through in-person and phone interviews.

Desk research and consultation with international disability experts was also undertaken

Disability inclusion in the Western Balkans and Eastern Partnership countries. Disability Inclusion Helpdesk Report No: 51.

CORBY, Nick
CLUGSTON, Naomi
September 2020

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This briefing note provides guidance on how to incorporate disability inclusion within economic and governance reform projects. It is intended to inform the UK Foreign, Commonwealth and Development Office’s (FCDO) Good Governance Fund (GGF). This Note provides basic, introductory guidance on disability inclusion to FCDO advisers and managers engaging with economic and governance reform and sets out opportunities for the FCDO’s programmes and policy dialogue to deliver positive impacts for people with disabilities. The Note addresses three key questions: 2 1. What is the broad status of the rights of people with disabilities in GGF countries and are there any significant differences between the countries? 2. What are the recommended entry points for incorporating disability inclusion within economic and governance reform projects within the five GGF thematic areas? 3. How should the GGF incorporate disability inclusion into the next business case?

 

An annex provides short notes on several factors for each country. The factors are: the legal framework; disability prevalence; economic inclusion; social inclusion; institutionialisation; access to justice; receptions and representation in the media.

Segregated education as a challenge to inclusive processes: a total population study of Swedish teachers’ views on education for pupils with intellectual disability

GÖRANSSON, Kerstin
BENGTSSON, Karin
HANSSON, Susanne
KLANG, Nina
LINDQVIST, Gunilla
NILHOLM, Claes
2020

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Many pupils with disabilities receive schooling in segregated contexts, such as special classes or special schools. Furthermore, the percentage of pupils educated in segregated settings has increased in many European countries. Studies suggest that there is high commitment to the general ideology of inclusive education among teachers in ‘regular’ education in many countries. This survey study investigates the views of teachers in segregated types of school about education. A questionnaire was sent out, in 2016, to all Swedish teachers (N = 2871, response rate 57.7%) working full time in special classes for pupils with intellectual disability (ID). On a general level results show that there is a strong commitment to preserving a segregated school setting for pupils with ID, a limited desire to cooperate with colleagues from ‘regular schools’ and a view that schooling and teaching are not quite compatible with the idea of inclusive education. The results highlight the importance of investigating processes of resistance within segregated schools to the development of inclusive schools and education systems. We argue that, while research and debate about inclusive education are important, both are insufficient without analyses of existing types of segregated schooling.

What do we know about how to support mental health and wellbeing during the COVID-19 pandemic from past infectious disease epidemics?

QURESH, Onaiza
SCHERER, Nathaniel
July 2020

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The question and the problem:

Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.

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.

How can social protection responses to COVID-19 be made disability inclusive?

BANKS, Lena Morgon
HUNT, Xanthe
June 2020

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Question & problem

The COVID-19 pandemic and strategies essential for its containment are resulting in severe strains on economies, particularly in low- and middle-income countries (LMICs). These impacts will be felt most by groups already in or at risk of poverty, including the estimated 1 billion people with disabilities globally. Interventions to address the short- and long-term economic effects of the pandemic are urgently needed. Some countries have begun implementing or announced plans for interventions addressing the economic impacts of COVID-19, such as food assistance, emergency cash transfers, unemployment assistance or expansions to existing social protection programmes. As these programmes are developed, it is important to consider the extent to which their design and delivery is inclusive of people with disabilities. Failure to adequately include people with disabilities in this process will lead to widening inequalities.

The impact of an inclusive education intervention on learning outcomes for girls with disabilities within a resource-poor setting

CAREW, Mark
DELUCA, Marcella
GROCE, Nora
FWAGA, Sammy
KETT, Maria
May 2020

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Background: Despite a global commitment to the right to education for persons with disabilities, little is known about how to achieve inclusive education in practice, particularly in low- and middle-income countries (LMICs), where the majority of the world’s people with disabilities reside. Moreover, although exclusion from education is magnified by intersecting gender and socioeconomic inequalities, there is especially little knowledge regarding what approaches to inclusive education are effective amongst girls with disabilities living in resource-poor settings.

 

Objectives: The objective of this article was to assess the impact of an inclusive education intervention led by a non-governmental organisation (NGO) on the educational attainment of girls with disabilities in the resource-poor Lakes region of Kenya.

 

Method: A quasi-experimental design was employed, where the literacy and numeracy educational attainment of the intervention and control groups was compared over two time points a year apart (Time 1 and Time 2; total matched N = 353). During this period, activities pertaining to six core components of a holistic inclusive education model were implemented.

 

Results: Relative to the control group, girls with disabilities in the intervention group reported a greater increase in literacy and numeracy attainment, adjusted for grade and level of functional difficulty.

 

Conclusion: Findings suggest that the intervention was successful in engendering additional improvements in the educational attainment of girls with disabilities from the resource-poor Lakes region of Kenya. Results highlight both the applicability of NGO-led interventions in settings, where national implementation of inclusive education is constrained, and the potential of taking such interventions to scale.

 

 

African Journal of Disability, Vol 9, 2020

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Opening the GATE: systems thinking from the global assistive technology alliance

LAYTON, Natasha
BELL, Diane
BUNING, Mary Ellen
CHEN, Shih-Ching
CONTEPOMI, Silvana
RAMOS, Vinicius Delgado
HOOGERWERF, Evert-Jan
INOUE, Takenobu
MOON, Inhyuk
SEYMOUR, Nicky
SMITH, Roger O
DE WITTE, Luc
2020

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Purpose: 

This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.

 

Methods: 

The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.

 

Results: 

This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.

 

Conclusion:

 Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.

The promise of equal education not kept: Specific learning disabilities – The invisible disability

GOW, Melanie A
MOSTERT, Yvonne
DREYER, Lorna
February 2020

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Background: This research is part of a larger project on the exploration of inequalities in South African higher education. This current study focussed on the implementation of policies to eradicate inequalities in an inclusive education system.

 

Objectives: This article aimed to establish the implementation of policy by researching the lived experiences of students with specific learning disabilities (SLDs) studying in the university.

 

Method: A qualitative, systematic review was employed as the research methodology. Original peer-reviewed qualitative studies published between 1994 and 2017 were systematically reviewed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) was used to ensure rigorous reviews. The Critical Appraisal Skills Programme (CASP) was used to guide the process of critical appraisal of the selected articles which resulted in a total of 10 articles being selected for reviewing. The target population of this research comprised undergraduate students diagnosed with SLD. Semi-structured interviews were the main data collection tools used in the studies that were reviewed. Data from the selected articles were extracted and synthesised.

 

Results: The dominant themes that emerged from the review were: (1) fear of stigmatisation; (2) gaps in policy implementation; (3) experiences vary across departments; and (4) self-determination and family support as success factors.

 

Conclusion: An important aspect in the transformation of higher education institution is to ensure the closing of the disjuncture between policy and implementation in support of students with SLD.

 

 

African Journal of Disability, Vol 9, 2020 

Disability, mobility and transport in Low- and Middle-Income Countries: A thematic review

KETT, Maria
COLE, Ellie
TURNER, Jeff
January 2020

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This paper discusses issues affecting the transport and mobility needs of people with disabilities in middle- and low-income countries and how disability intersects with a range of other factors to impact on transport needs, use and engagement. The paper is intended to stimulate discussion and identify areas for further research, and identifies a number of key issues that are salient to discussions around equitable and inclusive transport provision, including patterns of transport use, behaviour and experiences, solutions and policy directions, measuring access and inclusion, policies and intersectionality. The paper also identifies gaps in knowledge and provision, barriers to addressing these gaps, and some possible solutions to overcoming these barriers. These include shifting the focus from access to inclusion, reconceptualising how ‘special’ transport might be provided, and most importantly listening to the voices and experiences of adults and children with disabilities. Despite lack of transport often being cited as a reason for lack of inclusion of people with disabilities, there is surprisingly little evidence which either quantifies this or translates what this lack of access means to people with disabilities in their daily lives in low- and middle-income countries.

 

Sustainability 2020, 12(2), 589

https://doi.org/10.3390/su12020589

Promoting employment opportunities for people with disabilities: Quota schemes (Vol. 1)

INTERNATIONAL LABOUR ORGANISATION (ILO)
December 2019

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Employment quotas represent one of the most frequently used policy measures to promote work opportunities for persons with disabilities. Slightly over 100 countries around the world currently provide for employment quotas in their national legislation. While some countries have had employment quotas for many decades, others have introduced them recently, revised them or are planning to introduce them. There is no standard approach.

 

This document (Volume 1) summarizes published information on quota schemes, to highlight elements of existing systems that are effective in promoting employment opportunities and making recommendations for approaches to take in introducing new systems or revising existing systems. In a further publication (Volume 2), an overview is provided of quota schemes by country and the extent to which quota schemes are in place alongside anti-discrimination legislation.

 

Case studies from France, Germany and Japan are provided.

What I think of school: perceptions of school by people with intellectual disabilities

VALENTIM, António
VALENTIM, Joaquim Pires
2019

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For people with intellectual disabilities who do not enter the labour market, school is usually the main chapter of their socialization with the wider society. Nevertheless, little is known about their long-term perceptions of this period. We conducted interviews and focus groups on the school experiences of 16 Portuguese adults with intellectual disabilities. Results show differences between older and younger participants in their accounts of social relations and educational methods, which result from changes in special educational policies in Portugal. Overall, members of both groups evaluate their school experience positively. Our results indicate that although there is a move towards more inclusive schools, discrimination is still prevalent. These results are discussed in terms of their psychosocial consequences, as well as their implications for educational policies, and inclusion. This study contributes to a better understanding of the school experiences of people with intellectual disabilities and how policies impact them.

An observation study of power practices and participation in group homes for people with intellectual disability

SVANELÖV, Eric
2019

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This study explored how participation constitutes and is constituted by practices of power in group homes for people with intellectual disability. The study used disciplinary power as theoretical perspective and was based on 50 h of observation in two group homes with a total of 15 residents. The analysis identifies practices of power and their relationship to individual agency and participation. The results show that institutional structures construct practices of power that define codes of conduct for the group home residents and their possibility for participation. This study offers implications for the daily lives of residents in group homes for people with intellectual disability.

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