Resources search

Guidelines on best practice for persons living with deafblindness

ZWANENBURG, Aline
TESNI, Sian
June 2019

Expand view

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.

WHO consolidated guideline on self-care interventions for health: sexual and reproductive health and rights

WORLD HEALTH ORGANISATION (WHO)
2019

Expand view

SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider. 

The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:

• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system

• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.

Disability and unpaid care work

CBM AUSTRALIA
2019

Expand view

This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Learning From Experience: Guidelines for locally sourced and cost-effective strategies for hygiene at home for people with high support needs.

World Vision/CBM Australia
May 2018

Expand view

This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HYGIENE AT HOME FOR PEOPLE WITH HIGH SUPPORT NEEDS
This document is one of two developed in the Jaffna District and describes strategies that used to assist households and individuals in hygiene tasks at home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka.

NOTE: The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

College for Students with Disabilities: A Guide for Students, Families, and Educators

Maryville University Online
March 2018

Expand view

Students with disabilities and their families have many pathways to achieve independence through higher education. First they need to know their rights and how to prepare for higher education.

There are many pathways to achieve independence through higher education, and Maryville University has created this helpful “Frequently Asked Questions” (FAQ) to give you an idea of what to expect as you research your options.

Learning from experience: Guidelines for locally sourced and cost-effective strategies to modify existing household toilets and water access

WORLD VISION
CBM Australia
2018

Expand view

This learning resource is the result of a partnership between World Vision Australia and CBM Australia that aims to improve inclusion of people with disabilities in World Vision’s Water, Hygiene and Sanitation (WASH) initiatives, including in Sri Lanka. The guidelines are based on experiences and observations from World Vision’s implementation of the Rural Integrated WASH 3 (RIWASH 3) project in Jaffna District, Northern Province, funded by the Australian Government’s Civil Society WASH Fund 2. The four year project commenced in 2014. It aimed to improve the ability of WASH actors to sustain services, increase adoption of improved hygiene practices, and increase equitable use of water and sanitation facilities of target communities within 11 Grama Niladari Divisions (GNDs) in Jaffna District.

To support disability inclusion within the project, World Vision partnered with CBM Australia. CBM Australia has focused on building capacities of partners for disability
inclusion, fostering connections with local Disabled People’s Organisations, and providing technical guidance on disability inclusion within planned activities. World Vision also partnered with the Northern Province Consortium of the Organizations for the Differently Abled (NPCODA) for disability assessment, technical support and capacity building on inclusion of people with disabilities in the project.

HOME MODIFICATIONS FOR WASH ACCESS
This document is one of two developed in the Jaffna District and describes the strategies which were used to assist people with disabilities to access toilet and water facilities at their own home. The strategies were designed to be low cost and were developed using locally available materials and skills in the Jaffna District of Sri Lanka. Houses and toilet structures in the region were made of brick and concrete. No new toilets were built and modifications involved only minor work to existing household structures, water points and toilets.

NOTE:
The development of this learning resource was funded by the Australian Government's Civil Society WASH Fund 2.

Health information-seeking behaviour of visually impaired persons in Ibadan Metropolis, Nigeria

SALAMI, Karibou
January 2018

Expand view

Persons living with visual impairments form a major group of people with various types of impairments in African countries. Little has been reported about the means and forms of information they seek to cope with their environment, and studies in Nigeria specifically, have not explored health information-seeking behaviour of visually impaired persons. This paper documents the health information-seeking behaviour of visually impaired persons (VIPs) in Ibadan Metropolis. A standardized questionnaire was administered to 200 VIPs sampled from two health facilities in Ibadan Metropolis. Most (66%) of the VIPs were partially sighted, 43% reported health issues as their most worrying challenge, while 20% reportedly had daily unmet health information needs. VIPs accessed information about medication for ailments from friends (45%), adopted herbal medication (50.5%) and /or indulged in selfmedication (21%). They reportedly had worse health (9.5%) status, while 4.5% reportedly remained worse off emotionally

 

Disability and the Global South, 2018 Vol.5, No. 1, 1252-1272

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

Expand view

The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2, 1472-1487

Defying the barriers

KHONDKAR, Laila
HAQUE, Reazul Md
January 2018

Expand view

Research summaries, case studies and process documentation from “Inclusive Protection and Empowerment Project for Children with Disabilities (IPEP)” are presented.  The aim of the project was to build resilience and capacity among children with disabilities and to create a violence-free community for them. The project ran in five districts of Bangladesh i.e. Sylhet, Dhaka, Barishal, Rangpur and Gaibandha from 2014- 2017. 

 

The research topics were:

  • Understanding the Vulnerabilities of Children with Disabilities Living in both Government-run and Private Residential Institutions
  • The Vulnerabilities of Children with Disabilities from Low-income Households
  • Social Protection Schemes Relevant to Children with Disabilities and their Families 

 

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Balaynesh
et al
September 2017

Expand view

Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

 

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

The right to live independently and be included in the community : Addressing barriers to independent living across the globe

ANGELOVNA-MLADENOVA, Lilia
June 2017

Expand view

"This reports looks at the main barriers to the realisation of disabled people’s right to live independently and be included in the community, which is set out in Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD). They are grouped in seven broad areas: (1) misunderstanding and misuse of key terms, (2) negative attitudes and stigma, (3) lack of support for families, (4) prevalence of institutional services, (5) barriers related to community support services, (6) barriers in mainstream services and facilities, and (7) barriers, concerning other CRPD provisions, with effect on Article 19. A set of recommendations is also provided, outlining measures required to address these barriers"

Exploring the links between poverty and disability in rural Bangladesh

DAVIS, Peter
May 2017

Expand view


This paper explores the links between poverty and disability drawing from 60 qualitative life-history interviews conducted in rural Bangladesh, in 48 households, in three districts, in March 2016. The paper provides insights into the relationship between poverty and disability with the aim of informing policy and practice concerned with both reducing poverty and improving the life chances of people with disabilities. All of the households had a person with a disability as a member, and in three households, two household members had a disability. Mechanisms by which poverty caused or exacerbated disabilities, and also how people with disabilities fell into poverty, were prevented from escaping poverty, and, in some cases, succeeded in escaping poverty are explored. 
 

“When will I get to go home?” Abuses and discrimination against children in institutions and lack of access to quality inclusive education in Armenia

BUCHANAN, Jane
February 2017

Expand view

This report documents how thousands of children in Armenia live in orphanages, residential special schools for children with disabilities, and other institutions. The report is based on Human Rights Watch visits to five state-run orphanages and ten state-run schools, including six special schools and four mainstream schools, and interviews with 173 people, in eight cities in Armenia. They interviewed 47 children and young adults, and 63 families of children living in orphanages, attending special schools or attending mainstream schools. They also interviewed directors of orphanages, special schools, and mainstream schools, as well as social workers, doctors, teachers, psychologists, caregivers, and other staff in institutions

Topics include: overview of residential institutions in Armenia; institutionalization of children and young adults and discrimination in the deinstitutionalization process; problems for children and young adults in residential institutions; lives transformed; national and international legal obligations; failure to guarantee quality education to children with disabilities; other forms of education for children with disabilities; government and donors’ response; recommendations

Social inclusion, care and belonging of children with spina bifida: perspectives from Uganda

BANNINK, Femke
February 2017

Expand view


This study presents a situation analysis on daily functioning, caregiving, and inclusion of children with spina bifida in Uganda. 139 children with spina bifida and their families from 4 regions in Uganda participated in this study. Findings show how a complex play of cultural values, globalisation and access to biomedical care determines knowledge, and negative attitudes about, and perception of children with spina bifida


Afrika Focus, vol 30, no. 1, 2017,  pp. 130-136

DOI https://doi.org/10.21825/af.v30i1.4984

 

Evaluating the impact of a community–based parent training programme for children with cerebral palsy in Ghana

ZUURMOND, Maria
et al
January 2017

Expand view

"Cerebral palsy is the most common cause of physical disability in children worldwide, and yet in most low resource settings there are few services available to support children with cerebral palsy or their families. Research is required to understand the effectiveness of community and/or home based programmes to address this gap. This 2-year study aimed to evaluate a participatory caregiver training programme called ‘Getting to know cerebral palsy’ in Ghana. The training programme consisted of a monthly half-day support group with training, and a home visit, delivered across eight sites in Ghana over 10 months. A total of 76 families and children were included at baseline and 64 families followed up one year later at endline. Children were aged between 18months and 12 years with a mean of 3.8 years and a range of severity of cerebral palsy. Nearly all (97%) the caregivers were female and the father was absent in 51% of families. The study was a pre-post intervention design using mixed methods to evaluate the impact. A baseline and endline quantitative survey was conducted to assess caregiver quality of life (QoL) and knowledge about cerebral palsy and child feeding, health, and nutrition outcomes. Qualitative data was collected to explore the impact and experiences of the training programme in more depth".

Advancing the access of deafblind women and girls to sexual and reproductive health

VISUAL HEARING IMPAIRMENT MEMBERSHIP ASSOCIATION (VIHEMA)
2017

Expand view

Activities to promote the access of deafblind women and girls to sexual and reproductive health are reported via brief descriptions of what happened, what changed and what worked. Activites included: training the deafblind women in their rights;training relatives of deafblind women, giving advice on general care, as well as highlighting the importance of supporting their sexual and reproductive health choices and promoting family planning; tackling the issue of the forced sterilization; awareness raising via newspapers and radio and improving livelihoods.

 

 

Advances in Autism, vol.3, no.3, 2017 Special issue: Improving access to healthcare

2017

Expand view

Special issue: Improving access to healthcare. The aim of this special issue is to stimulate discussion and new research on the health and health care of people with autism spectrum disorder. In a co-productive approach, we give people on the autism spectrum, their families and health care providers a voice to open an exchange between professionals and people with lived experience. The guest editorial is freely accessible. There are six papers:

 

  • Autism and healthcare
  • Quality of health and health services in people with fragile X syndrome: perspective of their parents
  • Transition tools and access to adult primary care
  • Systemic-attachment formulation for families of children with autism
  • An online ASD learning module for pediatric health care professionals
  • Pain in Rett syndrome: peculiarities in pain processing and expression, liability to pain causing disorders and diseases, and specific aspects of pain assessment

Report of the Special Rapporteur on the rights of persons with disabilities (theme: access to rights-based support for persons with disabilities)

DEVANDAS, Catalina
December 2016

Expand view

In her report, the Special Rapporteur provides an overview of the activities undertaken in 2016, as well as a thematic study on access to support by persons with disabilities. The study includes guidance for States on how to ensure the provision of different forms of rights-based support and assistance for persons with disabilities, in consultation with them. In preparing the study, the Special Rapporteur convened a regional expert consultation in Addis Ababa in September 2016 and analysed the responses to a questionnaire sent to Member States, national human rights institutions, agencies of the United Nations system, civil society organisations and persons with disabilities and their representative organisations. As at 5 December 2016, she had received 114 responses. 

Disability, family and identity

SCHNEIDER, Cort
October 2016

Expand view

Many people with disabilities struggle with issues that relate to identity development.  Many people with disabilities find it difficult to develop a positive sense of self. There is also no question that familial relationships play a significant part in the process of identity construction for people with disabilities. Thus, it is important to examine how family relationships influence the process of identitydevelopment for people with disabilities. Conversely, it relevant to explore how a person’s identity development can impact his or her relationship with family members. This article employs an autoethnographic approach to research in order to examine issues that relate to disability, identity and family. It elucidates the complex nature of family scripts and identity. In addition this paper contends that the process that an individual goes through in order to “come to terms” with a disabled identity, can transform the relationships that an individual has with various family members.

 

Considering Disability, Vol.1, Issue 3&4

DOI: 10.17774/CDJ1.32016.2.20575874

Parenting a child with intellectual disability – factors that may contribute in making parenthood a positive experience

PSAILA, Elvira
October 2016

Expand view

This paper reviews both internal and external factors which can determine how parenting a child with an intellectual disability can be a positive experience. One in which the parents act as enablers in creating an environment that promotes the development of their children into autonomous adults from the moment of disclosure of the presence of intellectual impairment. The paper reviews literature that explores coping mechanisms, resilience and sense of coherence (SoC) as intrinsic qualities, and working with professionals and support systems as external factors. 

Considering Disability Journal, Vol.1, No.3

DOI: 10.17774/CDJ1.32016.5.20575874

Pages

E-bulletin

Source e-bulletin on Disability and Inclusion

Subscribe to updates