In the early weeks of the full-scale invasion of Ukraine, EDF undertook a rapid survey of the situation of children with disabilities affected by the crisis. The result was clear: children living in residential institutions were at the highest risk of harm.
Some were left behind in war zones with all the risks that it entails. Some were evacuated to other places in Ukraine – to safer regions, but placed in overcrowded institutions without enough resources to meet basic needs. Some were evacuated to other institutions abroad. Reports at the time demonstrated that children with high support needs were lacking this support, and although the war had worsened the risks they faced, it also highlighted the terrible impact of their chronic neglect during peacetime. The situation of these children was already a chronic emergency, greatly aggravated by the war.
The disability movement has known for a long time that segregation and institutionalisation are harmful to children – and the impact of that harm is even greater for children with disabilities. Yet, even in countries where progress is being made to end this segregation, children with disabilities are often the last ones to be moved out of institutions.
It might have been too much to expect the Ukrainian government to prioritise deinstitutionalisation under the current circumstances, but with the support of the European Union, international organisations and NGOs like the European Disability Forum, the government has made moving children out of institutions to live in the community a top priority.
Still, it has been a challenge to convince all key actors that children with disabilities and high support needs should be among the first to be supported in this process.
There are several reasons for this:
- Vision, belief and attitudes. Many decision-makers, donors and civil society actors struggle to believe that family care and community living are possible for children with high support needs. First, there is a widespread belief that children with high support needs require 24/7 medical care. Second, there is the mistaken expectation that children will die early (even though few have life-threatening conditions) and that the role of the institution is to provide “end-of-life” care. In addition, few people believe that their families will want to care for them – or that foster families can be found.
- Knowledge and capacity. Children with high support needs who have been institutionalised for most of their lives have experienced a particularly insidious form of neglect. This results in a unique constellation of challenges, and there are few professionals who know how best to support the children.
Because of this, EDF has developed a programme in one institution in Ukraine to demonstrate how – with the correct approach, resources and knowledge – these children can live in families and access education as part of the community. This demonstration is being done together with our partner, the Ukrainian Child Rights Network, and in close cooperation with the responsible bodies at the national and regional levels. The plan developed by the EDF team aims to ensure that all the children and young adults from the institution will be supported to move to family care.
To begin, a team of local people was hired and trained by international experts on appropriate therapeutic, socialisation and educational interventions for children at the highest risk of harm. This approach helps the children progress through the stages of development they have missed due to institutional neglect. Now, after only six months, the children are all gaining weight and developing skills that disprove the believes we mentioned above. Children are learning to walk, talk, eat and drink independently. They are making choices for the first time in their lives – telling the team what they like and do not like – and how they want to be supported and looked after.
One girl, “Tetyana”, enjoys doing art with her feet – she will happily concentrate for an hour to complete a painting. Our local team framed her first artwork and presented it to Iryna Tuliakova, the Head of the Ukrainian government’s Coordinating Centre for the Development of Family Education and Childcare.
Here is what Ms Tuliakova posted on social media in response:
About six months ago, I saw her on video. There were many children there, but the look of this girl was before my eyes all the time. I remember how, when we first met, she was using her feet to play – and now she uses them to draw. And after only a few months of working with specialists, she walks, reacts, laughs, learns, lives. I can’t put into words the feeling of butterflies in my stomach when Tetyana smiles in response to my admiration for her accomplishments. She has such a strong character, she is a real fighter and at the same time an incredibly beautiful flower. I am filled with emotions and gratitude for each child who, having received warmth and professional support, returns to childhood. I believe that we will prepare each and every one for family forms of education and will do everything possible and impossible to make our children happy… I don’t want to tell you the horrors surrounding this story, but believe me, what happened in these few months is simple a miracle! People, believe in miracles! Even when it seems impossible to change anything – you just have to take at least one step. Do not pay attention to the ‘noise’, but follow the call of your soul.
Now, the project is starting to employ and train physiotherapists, an education coordinator and social workers – to move on to the next stage of community living. We will be contacting parents and attempting to rebuild relationships with a view to reunite families where possible. We will begin to recruit foster families. We are aiming to ensure every child and young adult becomes included in the education system.
We are also cooperating with organisations that are developing supported independent living so that, eventually, every child and young adult from the institution will be provided loving, nurturing family care – or be supported to live independently in the community. Once everyone can see this is possible for children from this one institution, they will realise it’s possible for all children with high support needs currently surviving segregated in residential institutions across Ukraine.
Contact
Gordon Rattray – Programme Coordinator
gordon.rattray@edf-feph.org