25 May, 2009

Data, information and research for people with disabilities

Research – there is presently no co-ordination or integration between research on disability and research on gender, social development and so on. Disability–related research tends to focus predominantly on the health and/or social welfare aspect of disability.
Research needs to overcome the person–centred approach where, to understand performance problems, equal attention is given to person, physical environment and machine environment. Attention must be given to the conceptualisation and measurement of disability so that research can incorporate insights on the interplay between people, resources and environment.
It needs to be acknowledged that the research process is as important as the outcome (results) of the research, and the specific attention needs to be given to both qualitative and participatory components in research methods to ensure that the different dimension of disability are appreciated.

Information – the ultimate responsibility for the dissemination of information on the living conditions of people with disabilities lies with the Government. 
It is the Government’s responsibility to disseminate information on disability throughout both political and administrative levels of the national and all spheres. 
People with disabilities should have access to full information of personal health, education and social aspects affecting their lives.
All strategies and mechanisms developed to make information accessible to citizens should be available in a format accessible to people with disabilities.

Within Policy objectives the following should be incorporated:

  • There must be regular, appropriate data collection on the living conditions of people with disabilities.
  •  Research should reflect the gaps between people’s physical or mental conditions and their resources/capacity (personal, economic, social), and the environment (geographic, architectural, social, political) in which they live, work and play.
  • Disabled people should have full access to all information that affects their lives.

Strategies necessary for proper data collection and research include:

  • Data collection in conjunction with national censuses and household surveys, undertaken in close collaboration with, amongst others, universities, research institutes and l Disabled People’s Organisaitons (DPOs).
  • The facilitation of better co-ordination of disability-focused research.
  • The facilitation of access to disability-focused research by the general research sector.
  • The integration of disability-focused and general research through the establishment of a forum where researchers and the disability sector can exchange information related to disability and research.
  • The development of a national database on existing research aimed at identifying gaps.
  • The development of national guidelines and minimum norms and standards for disability related research.
  • The development of national guidelines for the integration of disability into general research.
  • The facilitation of the publication of market relevant and significant research findings.
  • Networking with regional and international research and international research institutions.
In the Convention of the Rights of Persons with Disabilities article 31 also emphasizes on the importance of collecting appropriate information, including statistical and research data of people with disabilities, to enable our governments to formulate and implement policies to give effect to the present Convention and moreover to identify and address the barriers faced by persons with disabilities in exercising their rights.