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This research was commissioned on the occasion of the 2017 High-level Political Forum (HLPF) in New York to investigate how far the global commitment to disability has translated into implementation, monitoring and reporting processes at national and sub-national level. Four case studies were commissioned, exploring the extent of disability inclusion in alignment with the SDGs in Bangladesh, Kenya, Sierra Leone and Zambia. DPOs played a pivotal role in the research, with more than 40 DPOs consulted through key informant interviews and focus group discussions. In Zambia, the research was implemented by a local DPO – the Zambia Federation of Disability Organisations (ZAFOD). A literature review identified internet-based policy, legal and strategic documents related to disability and the 2030 Agenda, as well as documentation and reports on different SDG nationalisation initiatives.

Within the Stakeholder Group of Persons with Disabilities, a working group was created on the Voluntary National Reviews (VNRs) aimed at raising awareness among Organisations of Persons with Disabilities (DPOs) to engage with their governments in the national consultation processes on SDG implementation, with particular focus on the 2017 44 volunteering countries. The VNR working group are compiling an outcome document reflecting the work that DPOs carried out at the national, regional and global levels. A comprehensive report – called the Global Report on DPO Participation in VNR Processes – will be issued in draft form prior to the HLPF and will be updated afterward with concrete findings. 

The report will showcase the national level DPO work carried out in different regions as well as best practices and challenges, and will serve as a case study for Member States. It will additionally be useful for DPOs as a model to engage with their government. The case study will feature the volunteering countries of Denmark, Italy, Sweden, Nigeria, Togo, Kenya, Ethiopia, Argentina, El Salvador, Peru, Guatemala, Indonesia, Bangladesh, India and Jordan.

The ideology of Emancipatory Disability Research (EDR) reflected in the phrase ‘Nothing about us without us’, was first put forward in the 1990s. Although it aimed to place research control in the hands of the ‘researched’, i.e., people with disability, this rarely happens even today, 25 years later.

The Community Action Research on Disability (CARD) programme in Uganda embraced and modified the EDR approach, recognising the need for including people with disability in the research process from concept to outcome, and nurturing participation and collaboration between all the stakeholders in achieving action-based research. The research teams always included people with disability and staff from Disability People’s Organisations (DPOs) as well as academics and service providers. It endeavoured to generate and carry out research around issues that mattered to people with disability and their families. Leadership roles were assigned by team members. The objectives of the CARD programme were: (1) to fund teams to carry out action-based research on disability in Uganda; (2) to develop research and administrative capacity to manage the initiative within the academic registrar’s office at Kyambogo University; (3) to incorporate new knowledge generated from the studies into the ongoing local community-based rehabilitation and special education courses; and, (4) to ensure wide dissemination of research findings to all stakeholder groups.

CARD ran for 5 years, commissioning 21 action research studies in the field of disability and community-based services. This paper describes the process, presents the 12 completed studies, examines the extent to which the objectives were achieved and evaluates the experiences of the participating research teams, particularly in relation to the inclusion of its members with disability. It concludes with recommendations for future initiatives designed to promote validity, good value and inclusive approaches in disability research.

"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".

This toolkit is intended primarily for use by CSO's at the community level in India for use with field workers and local governments for challenging stigma and discrimination against people affected by leprosy/disabilities. The toolkit uses simple activities and pictures and is based on a participatory approach which requires active involvement of the group being trained. There are 6 modules:

What is leprosy

What is stigma

How we stigmatise others

How it feels to be stigmatised

Understanding human rights

Action towards inclusion

There are 10 appendices providing supporting information for the toolkit