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Young people with intellectual disability—The role of self-advocacy in a transformed Swedish welfare system

TIDEMAN, Magnus
SVENSSON, Ove
2015

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A growing number of young people in Sweden with intellectual disability have organized themselves during the last 15 years in self-advocacy groups for socializing, empowerment, and expressing opposition to the norms and attitudes in a society that labels them as disabled. At the same time, the Swedish welfare system has transformed dramatically with processes of far-reaching individualization, closure of the major institutions, decentralization of responsibility from the state to local governments, and an emerging welfare market where service users are turned into customers. The aim of this article is to analyse and discuss the significance of self-advocacy in the new welfare context. Data were collected over a period of more than 10 years using repeated interviews with members of two self-advocacy groups and participation observations. Findings suggest that participation in self-advocacy groups opens up members for increasing health and well-being through new roles and identities, and it strengthens their control over everyday life. Support is still needed, however, but in new ways; otherwise, the restrictions of the institutions will simply be reconstructed in the new welfare system.

A Framework for Healthcare Provision to Children with Intellectual Disability

NUJUM, Z T
ANILKUMAR, T
VIJAYAKUMAR, K
ANISH, T
MOOSAN, H
2013

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Purpose: The Kudumbashree mission, an initiative of the Government of Kerala state in India, has collaborated with Local Self Governments to set up ‘Buds’, a special school system for individuals with intellectual disability. The objectives of this study were to evaluate the structure and functioning of ‘Buds’ schools, to identify the healthcare needs of the students, and to conceptualise a framework for healthcare provision.

 

Method: A cross-sectional survey was conducted among 202 children at 11 registered ‘Buds’ schools in Kerala. A multidisciplinary team consisting of a psychiatrist, public health personnel and a social worker from the Medical Colleges of Kerala, visited the institutions. Data collection consisted of abstraction from medical records, interviews with parents, and clinical assessment and prescription of intervention by the specialists concerned. A pre-tested semi- structured questionnaire was used for every child. Using both quantitative and qualitative techniques, the public health personnel in the team evaluated the structure and functioning of the schools.

 

Results: The most commonly associated condition was epilepsy, seen in 11.9% of the children, while 28.2% had behavioural problems. The medicines needed were mainly anti-epileptics and drugs for behavioural problems. Interventions for self help and social skill training were also among the important requirements. The infrastructure and other facilities were poor in many schools, with the average student to teacher ratio at 14:1. While these institutions were well utilised, functioning was good only in 27.2% of the schools. Healthcare services and visits by healthcare personnel were far from adequate. This study proposes a framework in which the Medical Colleges and Health Services can function together to deliver healthcare services to children at these schools, with linkages from the District Mental Health Programme (DMHP).

 

Conclusion and Recommendation: Evidence that these schools are well utilised indicates a need to propagate this initiative in other areas of the state, country and other countries. However, improvements in infrastructure, human resources and other logistics are required. Besides, the healthcare needs of these children have to be addressed. A comprehensive healthcare programme through the existing system, using a multidisciplinary approach, needs to be developed.

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