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Disability is a story of love and the struggle for a dignified place in society to grow and thrive

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Benjamin Perks, UNICEF Representative

Benjamin Perks 200x250We estimate there are about 21,000 children with disability in the country. We also estimate that up to half of those could be out of school with little opportunity to play and form friendships.

When I arrived in Macedonia over a year ago, the most heart-breaking visit I made was to an institution called Demir Kapija. It was mainly for adults with severe mental and physical disability, but in contravention of all international standards this adult institution also housed a children’s wing.

The conditions were Dickensian. Children of all ages were lying lifelessly in cots, unstimulated and unloved with rotting teeth-having never been visited by a dentist. I gently put my finger into the palm of one of the children-and they clasped it so desperately and a faint smile appeared across their face. It was clearly a rare moment of the attachment and connection that all children- regardless of disability, need so much.  Yet clearly, they were starved of it.

Along with the Minister of Labour and Social Policy and the UK Embassy, we agreed that we would work day and night to end institutionalisation of children.

Demir Kapija was the sharp end of the story of children with disability in the country. People with disability and parent’s groups had long struggled for dignity and opportunity for their children. We estimate there are about 21,000 children with disability in the country. We also estimate that up to half of those could be out of school with little opportunity to play and form friendships.

In addition to de-institutionalisation, the UK Government and UNICEF are working with the Macedonian Government in three key areas to create conditions for all children with disability to be included, to flourish and to realise their full potential.

Poprecenosta e prikazna za ljubovta i borbata za dostojno mesto vo opstestvoto vo koe sekoj moze da raste i da napreduvaThe UNICEF Representative Benjamin Perks on a meeting with children with disabilities; Source: UNICEF

Firstly, we have all collaborated on an innovative multi-media campaigns to break the stigma and bring children with disability out into the open and to promote positive images of their engagement in society. Our research tells us this has yielded a six-fold increase in the share of the population who believe that children with disability should be included in mainstream schools. Also, during my visits throughout the country, parents tell me that for the first time their children are feeling comfortable being out in the open…and that you can now see more people with disability on the streets. Research confirms a growing number of citizens interact with children with disability on a regular basis. It’s easy to forget that until just a few decades ago we had the same situation in the UK and other high incomes countries. There is much to be done here but these changed attitudes will drive democratic demand for more inclusion

Secondly, the opportunity to help children with disability receive the type of early intervention that will help them to develop to their best possible capacity is impaired by lack of early detection and quite frankly inhumane methods for assessing the child when the disability is detected.

To address this, we are supporting the patronage nurse system to integrate early detection of disability and developmental delays into their post-natal visits to the family home. In line with the Convention on the Rights of Persons with Disability, we have introduced the International Classification of Functioning, Disability and Health (ICF) as an instrument to help professionals of different sectors to work together in identifying what the child can do, how they can learn and link the family with the services that can respond to their abilities. It is crucial  it is delivered in a compassionate and child friendly way and focuses on ability, and not disability.

Thirdly we are working with the Ministry of Education to make sure that all children with disabilities start their education in pre-school and that their learning journey is matched to their capabilities. This reform sits in the context of a broader education reform process which recognises that diversity in the classroom is an asset and that the fundamental role of a teacher is to get all of the brains working, all of the time-regardless of ability, personality or culture.

Our goal may sound idealistic, but we want to ensure and put an end to stigma, that the systems are in place, that disability is detected early in a compassionate and supportive way, that every child has a place in school.

Today we celebrate the fact that the last remaining children have been removed from Demir Kapija into much smaller units where they will receive continuous attention, love and care as and when they need it-we hope eventually they will be re-united with their families or adopted. In the past year, with UNICEF and UK support, the Government has reduced the number of children living in institutional care by 30%. But it’s not enough. We want to get to zero. Ultimately their story and the story of all children with disability is a story of love and the struggle for a dignified place in society to grow and thrive. Together the UK and UNICEF will work with all members of society to make this happen.

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Среда, 12 Декември 2018
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