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Barriers to Early Diagnosis, Intervention and Social Integration of Children with Developmental Disabilities: A Qualitative Study from Rural Villages and a Poor Urban Settlement of Bangalore, South India

GEORGE, C E
NORMAN, G
BENJAMIN, T E
MUKHERJEE, D
2014

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Purpose: Children with developmental disabilities, if given skilled early intervention, have the potential to lead productive lives and can contribute to the social and economic development of their communities. This study explores the barriers to early diagnosis and intervention for children with developmental disabilities who live in rural and urban areas of Bangalore city, India.

 

Methods: The study was conducted in selected villages of Devanahalli Taluk in Bangalore Rural District, and in Devara Jeevanahalli (DJ Halli), a shanty town in Bangalore city. The qualitative study design consisted of in-depth interviews and focus group discussions (FGDs).Parents of children with developmental disabilities, doctors practising in the area and school teachers were interviewed using a purposive sampling framework. An inductive, data-driven thematic analysis was carried out.

 

Results: The physician-related barriers were identified as lack of skills and understanding of children with developmental disabilities, lack of knowledge and resources, lack of specialist back-up services, and communication difficulties with regard to conveying bad news to clients. Parent-related barriers were financial constraints, delay in accepting the diagnosis, and prevalent myths, beliefs and stigma pertaining to disability. The teachers viewed children with special needs as an additional responsibility, and were also apprehensive about the attitudes and interaction of other children at school with children with disabilities.

Facilitating disability inclusion in poverty reduction processes: Group consensus perspectives from disability stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone

MACLACHLAN, Malcolm
MJI, Gubela
CHATAIKA, Tsitsi
WAZAKILI, Margaret
DUBE, Andrew K
MULUMBA, Moses
MASSAH, Boniface
WAKENE, Dagnachew
KALLON, Frank
MAUGHAN, Marcella
2014

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This paper addresses the challenge of how to get disability on the development agenda in four African countries. We explored perceptions of what initiatives would most help in achieving disability inclusion in Poverty Reduction Strategy Papers (PRSPs), and identified factors that can either promote or hinder these initiatives. Stakeholders from Disabled People’s Organisations (DPOs), other civil society organisations (CSOs), development agencies, researchers and government ministries, participated in the Nominal Group Technique and Force Field Analysis procedures across Malawi, Ethiopia, Uganda and Sierra Leone. While each country had specific contextual factors, common ideas for promoting greater disability inclusion in PRSPs focused on policy action, the need for a stronger evidence-base, mechanisms for directly influencing the PRSP process, as well as strengthening central government and DPOs’ capacity in this regard. Common facilitators for these actions were seen as the existence of a national disability umbrella body, disability-specific legislation, named Ministries for Disability, ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and the fact that disability was already mentioned (albeit inadequately) in some PRSPs. Common inhibitors included negative attitudes towards disability, poor capacity in DPOs and government ministries, poor policy implementation, little ‘domestication’ of the UNCRPD, little political will or consultation with people with disabilities, as well as aggregating disability with other vulnerable groups, a lack of research in the area and poor coordination between DPOs.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

Youth with disabilities in law and civil society: Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia

MEYERS, Stephen
KARR, Valerie
PINEDA, Victor
2014

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Youth with disabilities, as a subgroup of both persons with disabilities and of youth, are often left out of both legislation and advocacy networks. One step towards addressing the needs of youth with disabilities is to look at their inclusion in both the law and civil society in various national contexts. This article, which is descriptive in nature, presents research findings from an analysis of public policy and legislation and qualitative data drawn from interviews, focus group discussions, and site visits conducted on civil society organizations working in Phnom Penh, Cambodia and Jakarta, Indonesia. Data was collected during two separate research visits in the Spring and Summer of 2011 as a part of a larger study measuring youth empowerment. Key findings indicate that youth with disabilities are underrepresented in both mainstream youth and mainstream disability advocacy organizations and networks and are rarely mentioned in either youth or disability laws. This has left young women and men with disabilities in a particularly vulnerable place, often without the means of advancing their interests nor the specification of how new rights or public initiatives should address their transition to adulthood.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

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