Secretary, Board of Directors Lumos Foundation USA
At Lumos we believe that the institutionalisation of children is one form of child abuse that can be eradicated during our lifetime. Institutionalising children – separating them from their families and bringing them up in an environment where they live a regimented life – causes serious harm to their health and development, and to their future life chances. Sixty years of research evidence and practice demonstrates the harm caused by institutions and that children need to grow up in a loving family environment. Research suggests that new-born babies raised in institutions are at serious risk of impaired brain development. For babies living in an institution for longer than six months, even if they are finally placed back into a family environment, it is unlikely they will completely recover from this damage. Across the European region approximately one million children live in large residential institutions. No matter how hard the institution personnel try, the system cannot respond to the individual needs of children and cannot replace the natural environment of a loving, caring family.
At Lumos we believe passionately in supporting local governments and communities to reform services and improve the future for their children. All Lumos’ country teams are made up of experienced and dedicated national personnel. International experts provide support to country teams where necessary. We prioritise work in countries where there is significant need, in terms of numbers of children institutionalised. Together with national and local government authorities, as well as other NGOs, Lumos works to develop comprehensive and systematic plans for reform. Our model approach to deinstitutionalisation is informed by the experience of many countries over the past 50 years. We provide examples of good practice, as well as information regarding challenges and risks, to help governments avoid mistakes made elsewhere. As well as assisting in policy development, Lumos implements reform programmes on the ground, so that we can support local professionals to develop the skills and experience necessary to manage change programmes without further external assistance.
Lumos is a relatively small organisation, but we have a significant breadth and depth of knowledge and expertise in all aspects of the deinstitutionalisation process. We know that we are not the only organisation involved in reforming services for children and families and wherever possible, we work closely with UN bodies, such as UNICEF, the WHO and the OHCHR, as well as other international NGOs, Disabled People’s Organisations (DPOs) and local NGOs involved in reform. Our aim is to ensure no duplication of efforts and to make sure that NGOs are all speaking the same language, so that governments and communities do not receive conflicting messages. We also share resources where possible, to ensure efficient use of the valuable funds donated to Lumos and other NGOs.
More recently we have been working together with major donors, such as the European Commission, to try to find ways to make sure that funds for reform can be better directed – to prevent money from being spent on inappropriate projects, such as renovating large institutions and, instead, to ensure this money can be spent on projects to close institutions and set up community-based services for children and families.
What makes Lumos special is that we have a broad and long-term vision, which is ambitious, but possible to achieve. Our vision is that 20 years from now, in the European region, no more children will be living in large residential institutions that cannot meet their needs. This will be achieved by assisting governments across the continent to set up community- based services to support families, inclusive education services and accessible, diversified health services that serve the needs of all vulnerable children and their families.
We have the knowledge and experience to ensure that policies and laws are developed to accelerate and improve the quality of deinstitutionalisation. Simultaneously, we work as co-implementers with governments and communities, to ensure that deinstitutionalisation practices are carried out in the best interests of individual children.
Through our work, we help connect funders and decision- makers to the individual children whose lives they try to change. As a government minister from one country recently said, “we work with Lumos because you have the knowledge and expertise and because you respond flexibly to our needs. But more than anything, you remind us every day that every action we take is about the children”.