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Pivoting to inclusion : Leveraging lessons from the COVID-19 crisis for learners with disabilities

McCLAIN-NHALPO,Charlotte Vuyiswa
KULBIR SINGH,Ruchi
MARTIN,Anna Hill
et al
August 2020

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As governments respond to the Coronavirus 2019 (COVID-19) pandemic, the global community must ensure that persons with disabilities are included. This will require disability inclusion to be considered in all interconnected sectors; education, health, social protection, and inclusion from the planning stage all the way through to delivery and recovery efforts that are inclusive of all and are sufficiently differentiated to meet the specific needs of children with disabilities. The issues paper focuses on the following objectives: (1) addressing education, social needs, barriers, and issues for learners with disabilities at a global, regional, and country-level during the COVID-19 crisis; and (2) recommending practices for education and social inclusion, and reasonable accommodations utilizing the twin track approach and principles of universal design for learning.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

“Better to Make Yourself Invisible” Family violence against people with disabilities in Mexico

RIOS-ESPINOSA, Carlos
June 2020

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People with disabilities in Mexico can face severe abuse and neglect by their families with little protection or support from the government. This report documents how the lack of policies to support independent living can increase the risk of family violence and abuse for people with disabilities. It also documents the barriers people with disabilities face in accessing protection from abuse and justice on an equal basis with others, and documents serious concerns regarding implementation of procedural accommodations to ensure that people with disabilities can participate fully and equally in the justice system.

 

Based on research in 2018 and 2019, this report documents violence committed by family members against people with disabilities in four Mexican states: Oaxaca, Jalisco, Nuevo León, and Mexico City.  Interviews were carried out with 24 women and 14 men with disabilities. 

 

COVID19: Supporting Families

May 2020

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How COVID affect families with disabilities around the world, with talkers from, Canadian Association with Community Living, Inclusion Africa, Inclusion International, and Sociedad Peruana de Síndrome Down.

Guidance note 3: Home support

McGEOWN, Julia
BOISSEAU, Sandra
BOHAN-JACQUOT, Sandrine
April 2020

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This guidance is part of a series to provide support during the Covid-19 crisis. The guidance notes include: #1- Inclusive Digital learning; #2 - Teacher resources; and #3 Home support

 

To help parents interact constructively with their children during this time of self-isolation, and to improve both wellbeing and learning outcomes for girls and boys affected by the COVID 19 crisis, a wide range of resources have been developed.

 

10 top tips are provided for Home Support for parents of children with disabilities with links to various resources.

 

 

Coronavirus (COVID-19) - Cochrane resources and news

2020

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Cochrane provides high-quality, relevant, and up-to-date synthesized research evidence to inform health decisions. This page highlights content relating to the coronavirus (COVID-19) pandemic and the various related activities that Cochrane is undertaking in response.

We will be continually adding updates and additions to this page. Sections include information and resources for:

 

  • Public, patients, and carers
  • Healthcare workers
  • Researchers
  • Policy and guideline developers
  • The Cochrane Community

Activity bank for disabilities

EDUCATION ABOVE ALL INNOVATION DEVELOPMENT DIRECTORATE
2020

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Since the COVID-19 crisis has been particularly challenging for children with special needs, the Education Above All Innovation Development Directorate (IDD), in collaboration with experts in the field has developed the Activity Bank for Disabilities (ABD), an activity bank for children that require additional and specialized care, in order to support their continued development and learning.

The resources in the ABD have been developed for children with multiple needs. The domains and activities are meant to be chosen, customised and adapted by parents and caregivers depending on the learner needs and abilities. It is recommended that the activities are done under the constant supervision of the caregiver or parent.

#COVIDdisability: Disability-related resources for families

CANADIAN ASSOCIATION FOR COMMUNITY LIVING (CACL)
2020

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A series of disability-related resources related to the COVID-19 pandemic for people with intellectual disabilities and their families.

 

Topics include:

  • Trusted COVID-19 Information
  • Plain Language Information
  • COVID-19 and Discrimination 
  • Information for Caregivers
  • COVID-19 and Government Support
  • COVID-19 and Mental Health
  • Accessible Information on COVID-19
  • Emergency Preparedness and People with a Disability

Including parents in inclusive practice: Supporting students with disabilities in higher education

DUMA, Princess T.
SHAWA, Lester B.
October 2019

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Background: While a number of research studies have endeavoured to understand students with disabilities’ experience in higher education and have recommended ways to effectively support student success, the role of parental support has been neglected. Many studies have been hampered by a limited understanding of students with disabilities and have, in particular, underestimated students’ ‘access to economic, social and cultural forms of capital’ that caring parents provide.

 

Objectives: This article seeks to explore students with disabilities’ experiences of parental support in the South African higher education context. The research question guiding this article is: What forms of economic, social and cultural capital do parents and extended families provide to students with disabilities to enable them to succeed in higher education?

 

Method: In-depth semi-structured individual and focus group interviews were conducted with 17 students with disabilities at two universities of technology. The interview transcripts were thematically analysed with a view to understanding Pierre Bourdieu’s forms of capital that parents provided.

 

Results: The study found that while parents are not always able to provide material support, they offered rich and varied forms of social and cultural capital that enabled students with disabilities’ academic success.

 

Conclusion: Given that parental support plays an important role in the success of students with disabilities, and this role changes as these students become more independent, this study recommends the need for universities to also pay more attention to involving parents in the education of the former. It is hoped that putting in place appropriate forms of parental involvement can create a conducive environment for universities to provide inclusive education holistically.

 

 

African Journal of Disability, Vol 8, 2019

What interventions are effective to support home-based carers?

HUNT, Xanthe
August 2019

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Question & problem

Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

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These guidelines were developed to advance understanding of the needs and challenges of persons living with deafblindness and to promote their inclusion in society. The target audience are members of the CBM Federation with particular interest to, among others staff at Regional and Country Offices, Member Associations, co-workers, partners (including governments, education agencies, public and private service providers, and professionals), as well as persons living with deafblindness and their families.

 

Part One gives an overview of the impact deafblindness can have on an individual’s development and learning. It emphasises the need for a continuum of services and programmes, including early detection, referral, educational input, and family support.

 

Part Two outlines components of education and rehabilitation programmes. It provides guidelines on communication, holistic assessment procedures, assistive devices, advocacy and self-determination, transition planning, and discusses the importance of on-going regular access to health and therapeutic services.

 

Part Three considers how to improve and expand existing services through the provision of on-going personnel capacity building, and through networking with key stakeholders, to consider intersecting issues and service expansion. Each section includes an overview of the topic explored, some case studies and considerations for service implementation.

Progress on drinking water, sanitation and hygiene 2000–2017 - Special focus on inequalities

United Nations Children’s Fund (UNICEF)
World Health Organization (WHO)
June 2019

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The WHO/UNICEF Joint Monitoring Programme for Water Supply, Sanitation and Hygiene presents updated national, regional and global estimates for water, sanitation and hygiene (WASH) in households in its 2019 update report, Progress on Household Drinking Water, Sanitation and Hygiene 2000–2017: Special focus on inequalities. The report shows that in 2017:

The population using safely managed drinking water services increased from 61 per cent to 71 per cent
The population using safely managed sanitation services increased from 28 per cent to 45 per cent
60 per cent of the global population had basic handwashing facilities with soap and water at home

The report also focuses on inequalities between and within countries and reveals populations most at risk of being left-behind.

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

Implications of not addressing mental health and psychosocial support (MHPSS) needs in conflict situations. K4D Helpdesk Report 582

OMERT, Anna
April 2019

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This review examines the potential implications of not addressing mental health and psychosocial support (MHPSS) needs resulting from conflict throughout the life course, including on longer term mental and physical health, communities and families (including intergenerational effects), and overall human development (including education and participation in the workforce). 

Family-based activity settings of children in a low-income African context

BALTON, Sadna
UYS, Kitty
ALANT, Erna
2019

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Background: There has been an overwhelming call to improve the understanding of how children develop within an African context as Euro-American definitions of competence have been uncritically adopted as the norm for children in Africa. The activities that children engage in within the family setting are seen as important to understand how children develop within context. The use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention.

 

Objectives: This study that was conducted in Soweto, South Africa, aims to describe activity settings that typically developing young children in low-income African contexts participate in.

 

Method: A descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. Structured interviews with 90 caregivers were conducted.

 

Results: Findings show that children participate in a variety of activities with varied participation levels. The types of activities are dependent on the context and perceptions of caregivers.

 

Conclusion: These findings draw attention to understanding activities that children engage in within the family context.

 

African Journal of Disability, Vol 8, 2019

Views from the borderline: Extracts from my life as a coloured child of deaf adults, growing up in apartheid South Africa

HARRISON, Jane
WATERMEYER, Brian
2019

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Background: Over 90% of Deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of Deaf adults (CODAs) in South Africa. This article is an account of part of the life experiences of a female hearing child who was born and raised by her Deaf parents in apartheid South Africa in the 1980s.

 

Objectives: This study used auto-ethnography to explore the socialisation of a female coloured CODA during the height of South Africa’s apartheid era, in order to shed light on intersectional influences on identity and selfhood. The study was intended to contribute to the limited knowledge available on the life circumstances of CODAs in Global South contexts.

 

Methods: Evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of Deaf parents. Her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. A thematic analysis approach was used to analyse data, and the themes that emerged are: (1) CODAs as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. A discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge.

 

Results: Multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of Deaf parents who grew up in the apartheid era in South Africa. The result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and Deaf world.

 

Conclusion: This study suggests that, in part, the life world of a hearing child of Deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. Recommendations that inform policy and practice are outlined in the concluding section of the article.

 

 

African Journal of Disability, Vol 8, 2019

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

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