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Journal article

International guidelines and the inclusion of disabled people. the Ugandan story

Authors:
MILLWARD H., et al
Journal article citation:
Disability and Society, 20(2), March 2005, pp.53-167.
Publisher:
Taylor and Francis,

Uganda has made much progress towards including disabled people in its mainstream development, particularly in the political agenda. The exact process by which this has been achieved and the relationship between this and international guidelines and legislation are not known. This study undertakes to examine this from two specific perspectives: (1) How do international documents relevant to disabled people relate to national legislation in Uganda? (2) What can this comparison, together with the perceptions of stakeholders, tell us about how the legislation and services could improve? International legislation and Ugandan legislation is reviewed and compared. Data from 5 semi-structured key informant interviews and 6 focus group discussions involving a total of 38 people are collected and analysed. The themes arising from the data are related to the documents, legislation, policies and other relevant literature. The results examine the barriers to service provision; the role of change; the importance of representation; policy and legislation issues; and the effects of devolution. Five specific findings relate to how legislation and services can improve: more resources to increase access for disabled people; strong leadership and collaboration between Disabled People's Organisations (DPOs) funding bodies and governments; awareness raising and training; representation from all impairment groups; and raising the profile of disabled people through further legislation.

Journal article

How do carers of disabled children cope?: the Ugandan perspective

Authors:
HARTLEY S., et al
Journal article citation:
Child: Care, Health and Development, 31(2), March 2005, pp.167-180.
Publisher:
Wiley-Blackwell

Community-based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development. A qualitative phenomenological design was used to develop an in-depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural. There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources. CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.

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