Providing a lifeline

09.07.15

When the Bulgarian Government decided to begin the process of moving from institutional to community based care, they took the brave step to start with the most vulnerable young people.  However - local capacity and expertise to manage change for these children was limited, so they asked Lumos to partner with them.  Lumos’ team worked with the Government to develop an assessment tool, supported the assessment of each child’s individual needs and monitored quality. In the course of this work, we found that 170 children had untreated hydrocephalus (fluid on the brain that can cause serious brain damage or even death). This was the result of a lack of provision by the Government of equipment to treat the illness and as a result only children with families who could afford to buy the equipment could be treated.

Lumos worked with Government partners - the Ministry of Health, Ministry of Labour and Social Policy, with international partners - the Office of the High Commissioner for Human Rights (OHCHR), the European Commission, the International Federation for Spina Bifida and Hydrocephalus, and with local partners - local medical professionals and the association of Bulgarian parents of children with hydrocephalus - to organise a seminar on how to resolve the issue. As a result of our work the Government committed to providing the necessary equipment to all children born with hydrocephalus. This should ensure that, from now on, no children with the illness will go untreated.

"This should ensure that, from now on, no children with [with hydrocephalus] will go untreated."

EXPLORE LUMOS
We Suggest
  • Safeguarding Children by Monitoring and Improving Standards of Social Care
    Safeguarding Children by Monitoring and Improving Standards of Social Care thumbnail
  • Giving children in institutions a voice
    Giving children in institutions a voice thumbnail
Associated stories
  • Marketa*'s story
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  • Lumos in Greece in 2017
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  • Drivers of Institutionalisation
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  • Ion's Story
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  • Rediscovering the love of a family: Andre*’s story
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  • Turning Words into Action
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