How child participation can transform the lives of young people with intellectual difficulties

How child participation can transform the lives of young people with intellectual difficulties
etrLumos is an organisation from the United Kingdom.
Lumos fights for the rights of children in Europe.
It wants to help children leave institutions
and be a part of the community.Lumos believes children need to have a voice
when people make decision about them.Through different projects, Lumos helps
children and young adults with intellectual disabilities:

  • be informed about their rights and opportunities
  • be more involved in society

I became brave…and I started to feel that people are listening to what I have to say

By Nolan Quigley, Advocacy and Campaigns Manager, Lumos


At LUMOS, we believe passionately in enabling children and young people with intellectual disabilities to become self-advocates in the cause of improving their lives. Their views have been disregarded for too long and decisions affecting them have been made without consulting them. That is wrong, because they are the experts when it comes to their needs and expectations. They require support and encouragement to make their voices ring out lough and clear – and a bit of planning to bring them into contact with people in authority.


The quote above came from a teenage boy who became an enthusiastic member of a child participation group run by Lumos, in Bulgaria, under the Turning Words into Action.

He captured the sense of empowerment at the heart of child participation when he said: “It helped me to become useful for myself and also for others. I became brave, more confident, and I started to feel that people are listening to what I have to say. I became a thoughtful and more independent person who is able to analyse things. The project opened a door for us to achieve more in our lives.”

Another young person underlined the importance of talking directly to those in power. “Through the project,” he recalled, “my new friends and I met politicians and influential people to whom we gave the task to think about us and to prevent us from becoming people without direction and without a future when we leave school.”

Lumos is an international non-governmental organisation working to end the institutionalisation of children around the world – a harmful practice which damages their life prospects and, in the worst cases, their health and even their chances of survival. You can read more about children with disabilities and institutionalisation in an article by Lumos CEO Georgette Mulheir:

Deinstitutionalisation involves closing institutions and so-called orphanages and replacing them with family and community-based care systems, centred on the child’s individual needs. Listening to, understanding and responding to the needs and views of children is therefore essential.


Child participation is often misunderstood. Sometimes well-meaning adults write speeches for children to read, or coach children to express what are in fact someone else’s ideas. In other circumstances, children are consulted about changes, but without proper preparation or in an unfriendly, unfamiliar environment. Children with intellectual disabilities, in particular, are unlikely to understand well enough to be able to give an informed opinion. In some countries, children at adult events perform a song or dance, or read a poem. This is tokenistic. True participation ensures children express their own opinions in their own way.

A total of 53 European countries have signed The World Health Organisation’s Declaration, Better Health Better Lives (BHBL, committing them to “empower children and young people with intellectual disabilities to contribute to decision-making about their lives.”
Lumos – an NGO created by J.K Rowling, the Harry Potter author, because of her concern youngsters in institutions – created the Turning Words into Action (TWIA) project to help bring the BHBL declaration to life.


This project, funded by the European Commission Social Innovation Fund, ran from 2011 to 2013 and brought together children and young people with intellectual disabilities, their parents, policy makers and health and educational professionals in Bulgaria, the Czech Republic and Serbia.

We used pictures, posters and ‘easy read’ materials to help the young people articulate their views. TWIA children from Serbia and Bulgaria took part in a major international conference on child participation in Switzerland at the end of June 2013. Two TWIA self-advocates from the Czech Republic and Bulgaria spoke at a Lumos conference in the European Parliament.  You can read more about the project here:

Lumos continues to support its TWIA child participation groups (and a similar group in Moldova.) We also now collaborate with Inclusion Europe’s new project – Hear our Voices! – joining partners from Bulgaria (Cedar Foundation), Czech Republic (QUIP), Spain (Down Madrid) and Brussels (Eurochild). Like TWIA, this looks at practical ways to ensure children with disabilities can participate in key processes.


If all this sounds rather dry and earnest, then those who were privileged to take part in a TWIA three-day bus trip – from Varna, in Bulgaria around the country and on to Sofia – will tell you otherwise.

The children called it their “Tour of Dreams.” They met and debated with youth councils, voluntary organisations, civil society groups and political representatives – advocating for the changes needed to make the BHBL Declaration a reality in Bulgarian law and practice. The children prepared posters and a carpet into which they wove their interpretations of the Declaration’s priorities.

They happily recreated this experience in an imaginary bus journey at a workshop in Inclusion Europe’s Europe in Action conference in Belfast in May this year – inviting two girls from Spain’s Hear Our Voices group along for the ‘ride’.

Audience members joined the young self-advocates, parents and professionals on the imaginary bus journey. At each stop, we shared a different perspective on the beneficial impact that child participation can have on young lives. The children celebrated their journey with some delightful singing.

The bus journey towards true child participation is gathering momentum.

Lumos is an international NGO working to transform the lives of disadvantaged children in the European Region, where one million children live in large, residential institutions. Lumos believes that institutionalisation is a form of abuse, and that, despite best intentions, institutions harm the health and development of children.