Written by Nancy Maguire, Children & Youth Participation Cordinator at Lumos

Most of us take for granted just how many choices we make every day – deciding to snooze the alarm for ten precious minutes of extra sleep, choosing what clothes to wear, what to have for breakfast, popping to the shop on our lunch break for a cheeky bar of chocolate.

Yet for the eight million children and young people currently living in institutions around the world, these basic decisions that shape our lives are regularly denied. Life within institutions is often organised around strict regimes, serving the needs of the institution, above the best interests or individual preferences of the children living there. This is compounded for children who don’t use verbal communication.

Creating an environment for all children and young people to make choices and be actively involved in decision making is at the heart of everything we do at Lumos. This starts with basic day-to-day decisions about their own life, but goes far beyond.

Children and young people are experts in their lives and experiences. When given the opportunity, they can use this experience to help adults shape the services and policies designed to support them – when done well, this engagement benefits everyone. For young people, it develops a range of skills and fosters a sense of control over their life and destiny. For children and young people who have experienced trauma and neglect often caused by institutionalisation, being part of the solution and transforming the care system, for themselves, their peers and the next generation can be an important part of a healing process. A young person from Bulgaria recently told me that it was deeply satisfying to know that he can use his difficult experiences to improve the lives of other children in his situation, in Bulgaria and beyond.

The benefits of meaningful engagement are also felt by the adults tasked with protecting children. Only when we properly listen to what children and young people want and need can we create the policies and services that genuinely meet their needs.

With this understanding Lumos recently set ourselves a challenge. We have been shortlisted for a $100 million grant from The MacArthur Foundation along with partner organisations Catholic Relief Services and Maestral. If successful, this grant will help us massively scale up our work, potentially meeting our goal of ending the institutionalisation of all children worldwide a decade earlier than planned. In May of this year, we brought together 20 young people aged 12-22, with and without disabilities from Czech Republic, Moldova and Bulgaria. They used their experience of the deinstitutionalisation process to advise us on how we spend the money if successful.

The young people came up with fantastic ideas based on different themes including how to persuade donors that institutions are not the best places to care for children, what alternative services are needed to enable children to live in families and how to support children currently in institutions moved to new placements. The last topic produced the most moving insight and ideas.

They came up with the slogan ‘I am not furniture’, illustrating that you can’t move children around like objects. Many spoke of their anxiety of moving from institutions, even if they were deeply unhappy there. One said that even though she hated the institution, how could she be sure that the small group home would not be even worse? Their suggestions were that children should be properly informed throughout the process of moving and professionals should listen to how they were feeling. They emphasised the importance of visiting new placements before moving and professionals being available to answer their questions. Permanency was also important to them, and they expressed the difficulty in moving from placement to placement, and how disruptive changes to their social workers was.

The ideas which came out of this session will certainly inform our MacArthur grant proposal. Beyond that, it has cemented our belief that young people can and should be actively involved in strategic decision making. This is something Lumos has committed to developing. We cannot properly achieve our goal of successfully ending the institutionalisation of all children without them.