Afghanistan: Community Based Approach to Parents with Disabled Children: Reality or Ambition?

The impact of having impairment does not only affect disabled persons themselves but also their surrounding environment. The presence of disabled child for example affects the whole life of a family as well as the life of local community at large. Parents namely mothers are, especially affected by the presence of a disabled member within the family. This is especially true in a traditional society such as Afghanistan where responsibility of care is often left to female members of the family (i.e. mothers). Mothers are not only entrusted for providing care for a disabled child but also often blamed for having a disabled child in the first place. Attitudes of blame and shame towards mothers and families who have a disabled person are common in Asian societies (Miles, 1995).

With the absence of welfare system such as the case in Afghanistan, families are left alone to care for their disabled members, consuming time and resources that many can not afford. The state "transitional government" in this case does exploit family resources instead of extending the required support for all citizens. It becomes apparent that the family needs external support and that can best be extended when available in their localities. Community based approaches to supporting families with disabled children are amongst successful strategies in modern rehabilitation business. Community Based Approach to care or what came to be known as Community Based Rehabilitation (CBR) in this context involves the provision of services to certain target groups within a local community in a manner that users find accessible, appropriate to their needs, and utilizes local skills and resources. This often takes the form of services provided at home or neighborhood (ILO/UNESCO/WHO, 1994; Peat, 1997; Boyce and Paterson, 2001; Coleridge, 2002, Hinchcliffe, 2002). As an approach based on community participation, CBR deals not only with rehabilitation but has the potential to respond to the socio economic, cultural and political needs of society (Turmusani et al, 2002).

Service initiatives in Afghanistan

To bridge the gap between a family's need for rehabilitation and available support, several leading initiatives were established in Afghanistan to provide services for families with disabled members (children). This includes a number of notable programs such as the United Nations Comprehensive Disabled Afghan Program (CDAP), SERVE, and others. There are no accurate statistics on the total number of those benefiting from these programs, but it is estimated that more than 20,000 people receive various rehabilitation services throughout the country. CBR programs strive to reach for the neediest in society and cover as many as possible in their local community. In reality, however, much of CBR in Afghanistan is provided in community centers based in main cities and towns due to various logistical reasons. These centers remain limited in covering the existing needs of the disabled population who requires services let alone the newcomers. Transport of those living in distant locations together with other factors such as level of available skills, attitudes towards rehabilitation, cooperation between parents and workers, and level of understanding in local community at large are all examples of challenges facing this sector in Afghanistan. Moreover, the political situation in the region with refugees returning to Afghanistan adds yet another challenge of how to reach and serve the prospective needs.

Therefore, progressive support is needed for strengthening existing rehab structure delivered by such community organizations, especially in the area of working with rural families who have disabled children and disabled members in their midst. For example, specialized home-based training skills are greatly needed in the area of special education for intellectual disability, learning disability and speech therapy. It should be noted that family and disabled people (i.e. children) themselves can be a valuable source of support to rehabilitation process if given opportunity and allowed to make contributions in their own rehabilitation.

Ideals vs. realities

Although, modern trends in rehab emphasize the value of involving service users and their family in their own care in line with human rights ideals promoted by UN's standards rules (UN, 1994), such involvement has in fact been neglected in Afghanistan for a long time. It is often the needs of professionals that are taken into account when designing rehab interventions to disabled people including children. When the family does take part in rehab process, this takes the form of observers with little say over what their children do really need, not to say the almost non-involvement of disabled people in their own rehab. On the other hand, especially mothers have also other duties to do such as child rearing, housekeeping etc and coming to community centers on regular basis might not be the best options for them. Extending support to families within their village or at home might be more appropriate, especially for those in distant locations such as rural areas. There has been some effort made to strengthen home-based training for families of disabled members but this is still in a very limited and experimental scale.

The above arguments have been substantiated to a large extent by a number of professional observations made by researchers who conducted unstructured informal visits to various CBR initiatives in Afghanistan over a period of one year between November of 2002 and November of 2003. The focus of these visits was to assess the quality of community rehabilitation care provided for disabled children in Afghanistan through the exploration of the general perceptions of those involved in rehab process including users of service (i.e. children), family and workers towards the rehab process.

Results of assessments from various viewpoints

Discussion with the above actors on their perception towards community care showed that services provided were very appreciated by users and family alike, given the absence of governmental services altogether. However, these services had a number of limitations and tended to be generally of low quality. Workers providing physical rehab did not understand the different pathologies according to parents who were skeptical whether workers have the skills to deal with the various specific rehab needs of their children. For example, some felt their children were forced into unnecessary exercises which do not seem to have any impact. Parents have repeatedly emphasized the need for speech therapy skills as well as skills in dealing with children with intellectual disability both of which are very underdeveloped in Afghanistan. Further, parents complained that their physically disabled children receive little physiotherapy due to the large number of adults with back pain who are using the limited rehab service in the community.

On the other hand, professionals reported various problems in delivering rehab work including problems with children, parents, and community at large. They also reported challenges within the structure of CBR community centers such as level of support from managers and coordinators of community centers and existing system of transport, and kind of training they receive. Community workers including physiotherapy assistants explained that their status is not respected in the community in general especially in terms of remuneration and this is not helped by the secondary school they have which is often not even in physiotherapy.

The majority of workers reported unrealistic expectations by parents and children who demanded too much care from workers already burdened by many tasks. Some parents for example expect their children with severe physical mobility impairments to walk after a few sessions at Community Rehabilitation Centers or what is equivalent, while others expect very specialized sophisticated services, and a third expect schooling be provided to their children by such centers. This if anything underscores that the role of such community centers within local community was unclear to many.

Problems pertaining to community centers according to professionals included lack of appropriate space, equipment and materials, inefficient transport system, inaccuracy in diagnosis and admission of users (i.e. severe cases are still not reached while some very mild conditions are admitted), too much interruption to sessions by parents and adults, and lack of support from community coordinators (i.e. work schedule, procedures, etc).

Beyond CBR activities, the general support in the community was perceived to be inappropriate according to young adult service users and their families. Almost all complained about the lack of opportunities to do sports, cultural activities and educational tasks such as computer learning and other vocational training activities. Social life for many appeared to be restricted by the limited physical mobility caused by impairment, as well as the inaccessible environment at large. Relationships were therefore greatly affected.

All agree about difficult access to services and mainstream

All actors have agreed that access to community services were quite poor and disabled people continue to be excluded from mainstream activities. The exclusion from integrated education for disabled children was perceived as a priority issue for action with focus on post secondary teacher / professional training programs including physiotherapy training amongst others. Those from rural areas emphasized the need for effective transport system or other alternatives such as care at home. Welfare support was also highlighted as one supporting strategy for disabled users and their families.

Based on the above analysis, it could be concluded that existing community responses to the needs of families with disabled children have made significant contribution and remain valuable and very much needed, given the absence of other alternative form of support, especially governmental services. However, these have a number of shortfalls as mentioned earlier, notably in the lack of multidisciplinary and team work practices right from the inception and planning level. The limited participation of parents and users of services is expected given the historical context of Afghanistan with communist ideals which gives control primarily to professionals.

Strategy for future

CBR can be further exploited and its potential as a comprehensive strategy for community development can be further enhanced when users of services and their organizations are involved in the rehab process at all stages. To ensure wider participation of service users, it is suggested to activate an outreach mechanism in dealing with rehab needs of disabled people and their families as well as supporting various emerging disabled people groups and organizations among other measures.

References

Boyce, W. and Paterson, J. (2002), ‘Community Based Rehabilitation for Children in Nepal’, in M. Thomas, and M.J. Thomas (eds), Selected Readings in CBR - Series 2: Disability and Rehabilitation Issues in South Asia, National Printing Press, Bangalore, pp. 27-34.

Coleridge, P. (2002), ‘Community Based Rehabilitation in a Complex Emergency: Study of Afghanistan’, in M. Thomas, and M.J. Thomas (eds), Selected Readings in CBR - Series 2: Disability and Rehabilitation Issues in South Asia, National Printing Press, Bangalore, pp. 35-49.

Helander, E. (2000), ‘25 years of community based rehabilitation’, Asia Pacific Disability Rehabilitation Journal, Vol. 11(1), pp. 4-8.

Hinchcliffe, A. (2002), Children with Cerebral Palsy in Developing Countries: A Manual for Therapists and Community Workers, Intermediate Technology, London,

ILO, UNESCO, WHO (1994), CBR for and with People with Disabilities, WHO, ILO, UNESCO, Geneva.

Miles, M. (1995), ‘Disability in an Eastern Religious Context: Historical Perspectives’, Disability and Society, Vo. 10(1), pp. 49-69.

Muller, D. (2001), ‘Editorial Introduction: Community Based Rehabilitation: The Promise and the Paradox’, Disability and Rehabilitation, Vol. 23(1), pp. 15.

Peat, M. (1997), Community Based Rehabilitation, Saunders, London.

Turmusani, M. Vreede, A. And Wirz, S. (2002), ‘Some Ethical Issues in CBR in Developing Countries’, Disability and Rehabilitation, Vol. 24(10), pp. 558-564.

UN (1994), The Standard Roles on the Equalisation of Opportunities for Persons With Disabilities, United Nations, New York.

Wardak, A, Faiz IM, and Turmusani, M (2003) Disability policy development in Afghanistan: towards barriers free society. Expert Meeting towards a Comprehensive and Integral International Convention on Protection and Promotion of the Rights and Dignity of Persons with Disabilities. June 2-4, UNESCAP, Bangkok.

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