Girl at a process with a sign saying "our future's on the line"

It is estimated that between 5 and 6 million children live in institutions worldwide (read more here). In the 27 countries of European Union, over 302,979 children live in residential care settings (read more here). Although many countries across Europe have started closing down large institutions for children, children with disabilities are often left behind, or are moved from large institutions into smaller ones – such as small group homes, family-type homes or “children’s villages”. Many children with disabilities are forced to attend special schools, often living away from their families, because of the lack of inclusive education.

The Academic Network of European Disability Experts (ANED) published a series of country reports in 2019 on the implementation of Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) in the EU Member States and several neighbouring countries (read more here). According to the reports:

  • Among European countries that are planning or implementing deinstitutionalisation programmes, modes of congregate living, of various shapes and sizes, are a common replacement for older institutions, for both adults and children;
  • In a number of countries, children with disabilities are still disproportionately more likely to be placed in institutional care than their non-disabled peers and far less likely to benefit from deinstitutionalisation efforts (EU in general, Austria);
  • In some countries, where there has been significant progress in reducing the number of children in institutional care, children with disabilities are being left behind (Serbia and Slovakia);
  • In one country at least, where there has been an overall decline in the number of children in institutional care, there was an overall rise in the number of disabled children in such settings, without any improvement to the number of children placed in foster families (Slovakia);
  • While some countries have made progress in taking adults out of institutions, they have been less successful with children (Finland);
  • In countries where institutions are used as an ‘exception’ – Scandinavian countries included – disabled children are disproportionately represented (for example, 5 times as likely to be institutionalised) in residential care settings and their numbers are rising (Denmark, United Kingdom).

The right to independent living for children with disabilities

Although independent living is sometimes seen as a right for adults with disabilities, it very much applies to children as well. If we use the definition of the Independent Living pioneer Adolf Ratzka, “it is about having the same range of options and the same degree of self-determination which people without a disability take for granted”. For children with disabilities, this means being able to grow up in a family, with their siblings, going to a local kindergarten and school, taking part in activities available to local children and playing alongside their peers. For families of disabled children, independent living means being able to have their child at home and to give them the love and care they need to develop independent adults and to live up to their full potential  – without having to live in poverty, sacrifice their health, give up work or neglect their other children.

In addition to Article 19, on the right to live independently and being included in the community, Article 7 of the CRPD on children with disabilities requires that States Parties ensure “the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with others”. This article also makes it clear that the best interests of the child should always come first, and that children with disabilities should be supported both on age and impairment grounds on issues affecting them.

Article 23 of the CRPD, on the respect for home and family life, states that ”where the immediate family is unable to care of a child with disabilities”, governments should “undertake every effort to provide alternative care within the wider family, and failing that, within the community in a family setting”. Families may take different and diverse forms and may include a broad array of relationships, including married and unmarried parents, single parents, same-sex parents, adoptive families, kinship care, kafalah, sibling care, extended family, and substitute families or foster care.

The General Comment 5, on living independently and being included in the community makes it clear that, with regard to children, anything other than a family setting should be considered as institutional and is not in line with the CRPD. It warns: “Large or small group homes are especially dangerous for children, for whom there is no substitute for the need to grow up with a family. “Family-like” institutions are still institutions and are no substitute for care by a family.” Regarding the application of Article 19 to children, it notes: “For children, the core of the right to live independently and be included in the community entails a right to grow up in a family.”

The General Comment 5 explains the need to develop age-sensitive support services for girls and boys with disabilities, and to respect their evolving capacities. Support, information and guidance for families is also noted as key to preventing institutionalisation of children with disabilities. With regard to teenagers, the General Comment states that they may prefer personal assistance or professional sign language interpreters to informal support provided by relatives.

The UN Convention on the Rights of the Child (CRC) also has a dedicated article to children with disabilities. Article 23 of the CRC states that “a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.” In March 2022, the CRC and CRPD Committees adopted a joint statement on the right of children with disabilities.

ENIL’s work on children and youth with disabilities

ENIL has been advocating for a number of years for the right of all children – including children with complicated support needs – to grow up in a family. Growing up in a family gives children a much better chance of living independently as adults, especially when they are also able to attend local schools and enjoy their right to inclusive education. To this end, ENIL has been working together with a number of organisations – namely Disability Rights International, Validity Foundation, Inclusion International, International Federation for Spina Bifida and Hydrocephalus, International Disability Alliance and Child Rights International Network – CRIN – in order to influence international policy on the rights of children with disabilities. One of our joint initiatives has been this Call to Action, which has been supported by over 200 organisations and individuals.

During the 2017 Freedom Drive, ENIL held a conference focused on children with disabilities, where our aim was to give children a voice and to promote the importance of personal assistance and inclusive education for children with disabilities. Our submission for the 2021 Day of General Discussion on children in alternative care (organised by the Committee on the Rights of the Child) explains the role personal assistance may play in supporting children’s right to grow up in a family. More generally, our factsheet explains the relevance of the right to independent living to children with disabilities, and the links between independent living and inclusive education.

ENIL has been opposing the building of institutions for children with disabilities, especially where they are funded by the European Union. In this video, our member Marianne Knudsen, from Norway, speaks about her experience of living in a small group home as a child. You can find more information about our advocacy against institutions for children with disabilities in the Factsheet on Funding.

ENIL has an active Youth Network which campaigns on different issues of relevance to young people with disabilities and organises human rights education activities for young disabled people and mixed groups. One of the topics the Youth Network has been working on is sex and relationships – watch these videos to find out more. Additional information about the activities of our Youth Network is available here.