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Research gives impetus to parent power
Open University researchers have been working with parents in Bosnia and Herzegovina and in Croatia to improve conditions for children with disabilities and their families.
Traditionally, disabled children in these countries have been excluded from mainstream school and social activities, and old attitudes still persist despite official support for more inclusive policies.
Professor Monica Dowling and Dr Majda Bećirević, of the OU's Faculty of Health & Social Care, used participative qualitative methodology to examine the attitudes of parents of disabled children in both countries to their treatment by the medical, educational, social service and benefit systems.
While there were examples of good practice, parents reported many negative experiences. One mother described being reduced to tears after she was told by a doctor "we used to let children like this die".
The research culminated in workshops (see picture), in Sarajevo and Zagreb, bringing together parents with policy makers and professionals to make recommendations for improvements to the system.
The researchers conclude: "In essence, to better support families with children with disabilities, government organisations do not necessarily need to make major revisions in policies or increase in costing. Efforts need to be directed towards improvements in policy implementation and service delivery."
Parent activism and parents' groups are also playing an important role in changing the system, they say.
Their report adds that "participatory research is a good way for parents to identify and document their concerns and put forward suggestions for change".
It quotes a mother in Croatia who commented: "They will better listen to us if we have a scientific approach, if we come out with data and analysis. In that case we can say it is not only the needs of my child, but this is what many of us parents want.’
More information
The study: Parents' participation in the social inclusion of children with disabilities in Bosnia and Herzegovina and Croatia will be published by the Open Society Foundation.
You can read an abstract and request a copy of the study (available in English, Croat and Bosnian) from the authors on Open Research Online here.