Having adequate and appropriate support in the community is important for neutralising isolation faced by persons with disabilities and giving them control over their lives. It is a core requirement for the realisation of article 19 of the Convention on the rights of persons with disabilities (CRPD). The CRPD proposes a shift from a medical approach where persons with disabilities are considered passive recipient of care to a more to a rights based approach where support enables persons with disabilities to have control over their life. Implementing these global standards for support provision are not easy to achieve for low and middle income countries. Further, models of service provision that exist in the more developed countries may not be best suited for low and middle income countries for several reasons including social and cultural differences in the way individuals, families and communities function. For instance, persons with disabilities in rural India did not feel the need for a personal assistant rather felt having external support for their primary caregiver and to assist them to go out of their homes was adequate.
The family mostly looks after persons with disabilities in low and middle income countries. Very often they are not expected to create a separate life away from their family (Oka 1988). This perception may be more true in case of persons disabilities facing additional intersectional challenges such as persons requiring high level of support, socio-economic background of the family, gender, development of the community they are a part of etc. Yet the significance of informal support that persons with disabilities receive from their family cannot be undermined yet studies show that there are adverse social, mental and physical health affects on both the support provider and receiver in the long-term [WHO 2012; 2002; Evercare 2007]. Therefore there is a need to look at culturally appropriate models of support provision for persons with disabilities that are economically viable for governments to implement.
While there is no data on the number of low and middle income countries that have policies relating to formal support services but one may safely say that they would be very few. Further policy framework of several countries have a paternalistic approach ignoring the right of persons with disabilities to have choice and control in the way they live. Some countries make the families legally responsible to supporting persons with disabilities supporting the informal support system. Some countries offer or are beginning to offer caregivers allowance but that again is favoring the family support because there are no formal support systems available in the market. Not only the governments but also the persons with disabilities do not demand for additional support systems. However the reasons for persons with disabilities not demanding for additional support system may not be rooted in their satisfaction with the present support available but more in the disfranchised they feel within their families and communities.
Lack of support places persons with disabilities is an isolation trap. They live in a vicious circle that perpetuates their sense of dependency and uselessness. Being dependent on the family made the persons with disabilities feel like a burden denying them autonomy in their daily life. Further not having adequate support also denies them opportunities of social participation and inclusion that isolated them. Their community member have poor perception of them and are rarely involved with their life. This sense of dependency and social isolation is known to reduce the self-esteem of persons with disabilities and impact their mental well-being. Moreover, government efforts and community based programmes mostly remain largely segregated and do not foster inclusion of persons with disabilities.
Lack of adequate support can deprive persons with disabilities basic human rights having support on the other hand is key for the inclusion of persons with disabilities. Therefore, low and middle income countries should make big efforts towards create support options apart from just the family to really achieve the aim of inclusion. The responsibility of creating support option cannot be left with the government alone. It has to be shared by all stakeholders such as persons with disabilities, families, community members, NGO’s, the government etc. for the support system to foster inclusion. Efforts need to be made towards increasing self esteem of persons with disabilities so that they see themselves as valuable members of their family and community. Their self awareness may spark the desire for a better life outcome to them. Community members together with family members may be catalyzed to increase the circle of support that persons with disabilities have. This may also work towards communities becoming more aware and responsive towards persons with disabilities. Community based programmes may be relooked at their work to see if they promote self-awareness of persons with disabilities and promote the involvement of the community. The government may look at creating not only a formal support services system but also creates an ecosystem that fosters natural support networks to develop within the community.
To conclude, there is an urgency to work towards improving the amount and quality of support that is available to persons with disabilities in low and middle-income countries. The support systems developed need to be culturally and economically viable for the countries to implement. Models of personal assistance from the west may not be replicable in these countries. Further research may be undertaken to see how the community can be more involved in the life of persons with disabilities. Models of forming circles of care in the community for supporting persons with disabilities may be investigated deeper to see how they form, function and their impact on the lives of persons with disabilities, their families and on the community members. These may prove to be a viable option for increasing the support options for persons with disabilities and also promote inclusion since a larger number of people would be involved in supporting.
Condeluci A. (2008). Essence of interdependence: Building communities for everyone. Lash & Associates Publishing/Training Inc.
Mitra, S. (2006). Capability approach and disability. Journal of Disability Policy Studies 16(4): 236 – 247. doi: 10.1177/10442073060160040501
Nussbaum, M. C. ( 2011). Creating capabilities – The human development approach. USA, The Belknap Press of the Havard University Press.
Sen, A. (2009). The Idea of Justice. USA, The Belknap Press.
Trani, J. F., Bahkshi, P., Bellanca, N., Biggeri, M., Marchetta, M. (2011). Disabilities through the capability approach lens: Implications for public policies. ALTER – European Journal of Disability Research. 5(3): 143-157. doi:10.1016/j.alter.2011.04.001
UN (2007). The Convention on the rights of persons with disabilities. New York.
UN (2014). Thematic study on the right of persons with disabilities to live independently and be included in the community. OHCHR.A/HRC/28/37.
UN (2017). Report of the special rapporteur on the rights of persons with disabilities. OHCHR. A/HRC/34/58.
UN (2017). General comment on article 19: Living independently and being included in the community. CRPD/C/18/1.
WHO (2011). World report on disability. Geneva, WHO.