AFRINEAD DISABILITY RESEARCH COUNTRY WORKING GROUPS (DRCWG)

 

AfriNEAD DISABILITY RESEARCH COUNTRY WORKING GROUPS (DRCWG)

What is a DRCWG?

A DRCWG is a country based working group of disability researchers working together with other stakeholders in their home countries (people with disabilities, academic disability researchers, government, business and civil society) and adopting the AfriNEAD concept locally to establish the state of disability issues in their countries and identify areas that need intervention. The DRCWG conducts and collates context (country) specific research which enables the relevant stakeholders to grasp the state of disability issues in their countries. DRCWG also acts as a vehicle for facilitating the translation of disability research into policy and practice. It is a strategy to ensure that new and existing country level research on disability is translated into meaningful evidence-based advocacy, practice, products and policy to ensure equal opportunities and realization of human rights by people with disabilities.

DRCWGs are tasked with developing in-country research evidence together with action pathways for producing Best Evidence-to-Action Practice Guidelines which will be posted on the AfriNEAD webpage. The groups are essential platforms for dialogue and debates, which engender change with principles of participation, consensus building and joint decision making within AfriNEAD. The approach allows sharing of ideas, reduced bias, increased risk taking, high commitment, and improved communication and overall, improved and effective approaches to the needs of people with disabilities at country level, hence enabling AfriNEAD as a network to get a broader picture of the area of disability at continental level. This grouping can also act on advisory capacity as a vanguard with regard to issues of the correct terminology and approaches as well as instruments to use for National in country research such as National statistics as well as ensuring inclusion and participation of persons with disabilities in elections.

What is the place of DRCWGs within the overall AfriNEAD strategy?

One of the main focus areas of AfriNEAD is Outreach through ongoing networking and triannual conferences. Establishment and strengthening of functional DRCWGs is crucial as a vehicle to reach out to many disability researchers, people with disabilities and other sectors who may not have contact or membership with the main network. While these in-country DRCWG have the potential of giving AfriNEAD membership an understanding of the status of disability research in their own countries, they also ensure continuity of the work of AfriNEAD as the DRCWGs partake in implementing resolutions of the triannual conferences in a more country specific way. Thus, the UNCRPD which is the basis for the themes and commissions of the triannual conferences gets more attention and implementation in the different countries.

Aims and objectives of DRCWGs

The overall aim of a DRCWG is to adopt the concept of AfriNEAD to a local (country) context. In a way, the DRCWG is a mini-AfriNEAD which is country specific.

 

Objectives

  • To build critical mass and buy-in of the AfrINEAD concept at country level
  • To identify the main role players in disability research within the country and form meaningful partnerships with these role players.
  • To establish a complete picture of the state of the nation with regards to disability research and identify gaps and the way forward in addressing these
  • Yearly preparation of an overview of country status for publishing in the READ for Africa and the AJOD.
  • To present the work and findings of the DRCWG at the triannual conferences.
  • To domesticate and implement the UNCRPD through in-country research and its implementation and also addressing the practical functioning of the AfriNEAD Commissions through domestication of resolutions from the triannual conferences. The Commissions are:
  1. Children & youth with disabilities
  2. Development processes in Africa: poverty, politics and indigenous knowledges
  3. Economic empowerment
  4. Education: early to tertiary
  5. Health & HIV/AIDS
  6. Systems of Community Based Rehabilitation
  7. Holistic wellness: sports, recreation, sexuality and spirituality
  8. Research evidence & utilisation

 

Structure of a DRCWG

Membership to a DRCWG mirrors the AfriNEAD membership. Members from the disability, academic, government, business and the civil sectors form a RCWG. With the understanding that disability should be a concern for everyone, membership is open to any persons and organisations from these sectors who are interested in disability transformation through facilitating context relevant research and its translation into policy and practice.

Each DRCWG should have a coordinator who ensures effective and efficient running of the activities of the RCWG and oversees the delivery of its programmes and raising sufficient resources.

 

The role of AfriNEAD as the mother body and support base for the DRCWGs

DRCWGs are expected to take ownership of their local in-country activities and can be self-sustained while receiving ad hoc support from the AfriNEAD Secretariat when necessary. AfriNEAD will do the following:

  • Assisting with initial set up of the DRCWG through training and capacity building
  • Annual meetings with the coordinators to touch bases and provide necessary support
  • Publication of research evidence gathered by the DRCWGs in the READ for Africa and AJOD
  • Provide consultation services especially with conceptual components of the DRCWGs’ activities

 

Strategies to strengthen DRCWGs

Initial support: The AfriNEAD Secretariat with the support of member DPOs such as SAFOD will support countries in initiating RCWGs through capacity building workshops with the groups in their respective countries. The workshops will focus on training local researchers to equip them with research skills and also skills to initiate collaboration and engagement with DPOs, government and the civil sector.

Ongoing support: DRCWG coordinators will network with DRCWG coordinators from other countries for ongoing peer support. The AfriNEAD Secretariat will also provide ad hoc support with conceptual issues where necessary.

 

Guidelines (steps) for initiating a DRCWG:

For the DRCWG capacity building workshop to be successful, the following preparatory steps need to be taken:

  • AfriNEAD members from a particular country need to select a coordinator for the DRCWG. This coordinator works with the AfriNEAD Secretariat in setting up the capacity building workshop.
  • The coordinator should meet with people (researchers, DPOs, NGOs, Government departments Business entities) who might be interested in disability research.
  • Share the idea of developing a DRCWG for disability research evidence with the identified interested partners.
  • Start developing a reference group to support the DRCWG in that country

 

Using the area AT as a spring board to pilot the development of RCWGs

AfriNEAD intends for the next three years to focus on facilitating the coordination of Assistive Technology (AT) for countries that are affiliated to the network. To give focus to the work of AfriNEAD DRCWGs, a decision has been made to use the area of AT as a case study that will assist the development of these DRCWGs.  Due to the vastness of the area of AT, we intend to focus first on AT that will enhance community integration which will target physical, hearing and sight impairments. We think that it will be necessary for the DRCWGs to visit and tackle issues that facilitate and enhance the provision of AT for people with disabilities as well as factors that present barriers to them acquiring AT. AT for and with people with disabilities is one of the gateways to equal opportunities for the realization of the rights of people with disabilities (UN standard Rules 1982, INDS 1997, UNCRPD 2006).

Appropriate AT has been found to be one of the most important factors in supporting activities and participation of people with disabilities. There is minimal to non- existence accurate statistics estimates, in middle and low income countries. Only 0.5% of the population is reported as in need of orthosis or prosthesis and related rehabilitation services. In 2001, the WHO estimated that 250 million people in the world have a hearing impairment; the incidence rate is double in low and middle income-  countries (WHO 2004). Because data collection methods are often inadequate in assessing needs in rural areas, the overall need for AT is considered to be substantially higher. Furthermore, as medical advances continue to increase life expectancy, the predicted worldwide increase in the number of elderly people suggests a continued increase in demand for all types of AT in the coming decades. Most services are available in urban areas, although the need is often greater in rural areas. WHO estimates that in many low- and middle-income countries, only 5%-15% of people who require assistive technologies have access to them (WHO-DAR).

There is currently lack of concrete in-country research evidence from African countries to ascertain the availability and appropriateness of assistive devices needed by people with disabilities. Questions have been raised regarding the mass distribution of wheelchairs to thousands of individuals at one time without any accompanying services that would ensure that the wheelchair is appropriate for the individual. One result is that adult size wheelchairs are given to small children without proper postural support, which leads to secondary complications. Another matter of concern is the distribution of wheelchairs that are inappropriate for the environment in which they will be used, last for only a short period of time before breaking down, and are discarded (Pearlman, et al. 2008). We are aware that mass-production for distribution far from the factory brings with it all types of problems not encountered when production is local and the manufacturers and the customers are in close proximity. Without coordination between manufacturing, distribution, and service delivery, assistive devices and technologies are produced and/or delivered without adequately taking into account the needs of the person and the environmental conditions to which the devices will be subjected. Stone (1993) emphasizes that AT transfer does not only just result in the availability of a device; he suggests that the essence of technology transfer involves that also involves the exchange of knowledge. Through research that aims to understand the local situation and needs of people with disabilities in African countries, the DRCWGs will be able to figure out how to maintain the many benefits of locally manufactured assistive products and hence promote locally relevant and accepted systems of community integration.

Definitions

Assistive Technology (AT) is any device, piece of equipment, software or other tool that is used by people with disabilities to perform activities that might otherwise be difficult or impossible due to their disability. These devices, which increase, maintain, or improve functional capabilities of people with disabilities, may be acquired commercially, modified, or custom designed and fabricated[1].  Other AT includes all AT with the exception of wheelchairs, orthoses and prostheses.  Some examples are: equipment to assist with mobility (canes, walkers, standing frames, etc.), equipment that can enhance functional abilities for agricultural work or other vocational activities (modified handles on farming implements such as machetes and hoes, tool supports, etc.), and equipment to augment vision (magnifiers, braille, etc.), hearing (hearing aids) or communication (picture boards, etc.).

 

For more information about how to join a DRCWG or start up a group please contact us on Afrinead@sun.ac.za

[1] Definition modified from Technology Related Assistance for Individuals with Disabilities Act of 1988 SECTION 3.