Lumos’ position on the use of ‘Small Group Homes’

Around the world, children with disabilities are overrepresented in institutional care: in some states in Europe, as many as 78% of children in institutions have a disability.

As an organisation working to ensure that all children grow up in families, not institutions, the rights of children with disabilities are at the heart of Lumos’ mission. We cannot discuss institutionalisation, family separation and all that comes with it without explicitly addressing this overrepresentation and the disproportionate number of these children who continue to be institutionalised into adulthood.

Our work is grounded in fundamental human rights, including the UN Convention on the rights of the child and the UN Convention on the rights of persons with disabilities. Article 23 of the UNCRPD is crystal clear in its provision that all children with disabilities should grow up in a family. As we celebrate our 20th anniversary as an organisation, we want to take the opportunity to reflect on what we’ve learned through our work, ensuring that we adapt our approach as we learn.

As child rights organisations, it is essential for us to work hand-in-hand with disability rights organisations, including organisations of people with disabilities (OPDs) and self-advocates with disabilities. This ensures that our work is informed by the expertise of those with lived experience. Precisely because of these complexities in care, children with disabilities, especially those with complex disabilities, should be at the forefront of the reform of child protection and childcare systems, not at the back.

Lumos’ position: no institution, no matter how small, can fulfil a child’s right to family. Small group homes do not in any way fulfil a child’s right to live in a family. Lumos does not support the development of small group homes or engage in programming which involves the use of small group homes. We believe that our contribution is to work in partnership with government, private actors, other civil society organisations, self-advocates with disabilities and parents in order to prevent family separation and to find family-based care alternatives, to ensure that children with disabilities do not experience any form of institutionalisation.

Our position has evolved over two decades of practical experience. We understand the complexities and challenges of national deinstitutionalisation processes. We have experienced and recognise that, in some contexts, the short-term and exceptional use of small-scale residential care may be required during the transitional period. Nonetheless, we firmly believe that all governments should prioritise the creation of services and support which enable all children to live in families, ultimately removing the need for small group homes. Available resources should be used to invest in family care, and not in buying or building new institutions of any size.

We have seen, first-hand, that even with the best of intentions, the ‘short-term’ use of small group homes all too often becomes permanent. More troubling still is the fact that, in many countries who are perceived to be in the advanced stages of the care reform process, the truth is that amongst the small number of children who remain in institutions, the vast majority have disabilities. Children with mental health conditions, and children demonstrating behaviour that challenges, are also more likely to remain in institutions or to be placed in small group homes. We must face up to the fact that the way we have worked has left some children behind. Children with profound and complex disabilities and high support needs cannot continue to be the exceptions to our success stories.

We are unequivocal in our belief that children with disabilities must be at the forefront of deinstitutionalisation processes and associated service creation, not an afterthought. We commit to continuing to support the meaningful participation of children and young people with disabilities in all our work, ensuring that Lumos’ programming and advocacy are guided by those with lived experience.

Lumos’ work prioritises the creation of high-quality, community-based services which support all children to live in families. This includes early childhood intervention services, high-quality inclusive education for children with disabilities within mainstream education settings, inclusive social protection systems, specialised foster care, respite provision, rehabilitation and health services, community-based positive parenting and parental support programmes, and more.  These are essential in preventing family separation and supporting children to transition back to communities where separation has occurred, and we will continue to work with and encourage governments to develop such services.

We understand that sharing this position publicly is important. We are aware of the platform we have, believe in transparency, and hope our approach may prompt reflection from others in our sector.

Definitions: Lumos understands a ‘Small Group Home’ to be a registered, public or private, non-family-based group setting where paid staff or volunteers provide care for, typically, between 4-10 children. We recognise that Small Group Homes vary in scale, quality and provision: while some may provide personalised care with a high caregiver-to-child ratio, others demonstrate the qualities of a large-scale institution. No Small Group Home is a substitute for a family.

Authored by: