Summary
In the present report, submitted pursuant to Human Rights Council resolution 37/20, the United Nations High Commissioner for Human Rights provides an overview of the legal framework and practical measures to empower children with disabilities. She focuses on empowerment through participation and inclusive education, and analyses how to foster the personal and public decision-making of children with disabilities, their inclusion in the community and their protection from abuse, exploitation and violence. The High Commissioner concludes the report with a number of recommendations to assist States in empowering children with disabilities for the enjoyment of their human rights.
The report makes reference to the higher likelihood that children with disabilities experience rights violations, including their right to a family. Below are some of the sections of the report related to the care of children with disabilities:
II. Empowerment through participation
B. Enabling children with disabilities to decide on their own lives
12. Children with disabilities must have a say on where and with whom they want to live. They must be enabled to meaningfully participate in all decisions relating to their care arrangements, including proceedings concerning removal from parents or placement in alternative care.9 In its general comment No. 7 (2018) on the participation of persons with disabilities, including children with disabilities, through their representative organizations, in the implementation and monitoring of the Convention, the Committee on the Rights of Persons with Disabilities recommended that States ensure consultations with and the active involvement of children with disabilities in the adoption of all plans and strategies as well as for follow-up and monitoring when implementing the right to independent living in the community. Family law and policies should moreover include provisions to support and educate the parents of children with disabilities on their responsibility to involve their children in decisions affecting them.
III. Core elements of an enabling environment
A. Living and being included in the community
19. Families can be a fundamental channel to a child’s empowerment. The importance of growing up in a supportive family environment for the full and harmonious development of a child’s personality is recognized throughout the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities.14 Article 23 of the latter treaty guarantees the equal rights of children with disabilities with respect to family life, and sets out the State’s obligation to provide early and comprehensive information, services and support to children with disabilities and their families in order to prevent concealment, abandonment, neglect and segregation of children with disabilities (para. 3). It prohibits a child’s separation from their parents against their will unless deemed in the child’s best interests, precluding any separation on the basis of a disability of either the child or one or both of the parents (para. 4); and where the immediate family is unable to care for them, every effort should be made to provide alternative care within the wider family and, as a measure of last resort, within the community in a family setting (para. 5). The standards clearly show that, 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, and that the necessary information, guidance and assistance should be provided to families to ensure that they can in turn provide support and living conditions necessary for the child’s optimum development.15 This support must be respectful of the rights and evolving capacities of the child and the increasing contribution they make to their own lives.16
20. Despite the fact that the placement of children with disabilities in institutional care remains a practice in many countries,17 according to article 19 of the Convention on the Rights of Persons with Disabilities, all persons with disabilities have the right to live in the community, with choices equal to those of others, and must have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others. The institutionalization of children with disabilities heightens their risk of rights violations on multiple grounds, and is in itself an inherently disempowering practice that impedes their inclusion and participation in the community. The Committee on the Rights of Persons with Disabilities has in particular highlighted the higher risk run by children with intellectual disabilities, children with autism and children with psychosocial disabilities being placed into institutions, frequently upon the advice of medical professionals. There is ample evidence demonstrating that institutions are detrimental to a child’s development and well-being. Children growing up in institutional environments experience delays in their development, especially in early childhood, and potentially irreversible psychological damage, including that caused by emotional neglect. Institutionalized children run a much higher risk of psychological, physical and sexual violence. Moreover, institutionalization is one of the most serious barriers to inclusive education.
21. Article 19 of the Convention on the Rights of Persons with Disabilities provides for the right to live independently and be included in the community, which precludes segregation and institutionalization for the purposes of care or treatment. The Committee on the Rights of Persons with Disabilities has repeatedly identified deinstitutionalization as a matter of priority. It has stressed that States are required to have a strategy and a concrete action plan for deinstitutionalization that requires the closure of institutions as well as systematic transformation leading to the creation of community-based inclusive support services. 18 These strategies must be cross-sectoral, involving social welfare, social protection, health, education and finance ministries, in order to establish coherent and sustainable community and family-based services. They should engage all actors to the same end, including training and awareness-raising among community and social workers, as well as health and education professionals, in order to foster a commitment by the entire community.
23. In spite of the ongoing practice of institutionalizing children with disabilities, targeted efforts towards deinstitutionalization are being made in a number of countries. In its submission, Croatia described its plan of deinstitutionalization and transformation of social welfare homes and other legal entities, a national strategy to implement deinstitutionalization and the transformation of care institutions, particularly by developing the range of non-institutional services for children with developmental disabilities, and supporting their full inclusion in community life by ensuring the availability of the requisite services. A variety of community services have been developed to support the inclusion of children with developmental disabilities in community life. These include organized housing with support, counselling and other services provided through mobile teams, psychosocial support services, and early intervention and assistance to facilitate the inclusion of children with disabilities in education. The strategy includes specialized training for education assistants and efforts to increase the involvement of children with disabilities in the community through sport, alongside the expansion of accessible sporting and other community facilities.
24. According to the submission of Romania, the National Authority for the Protection of the Rights of the Child and Adoption is implementing a project on the development of plans for the deinstitutionalization of children deprived of parental care and their transfer to community-based care, with the aim of continuing the process of deinstitutionalization of children, including children with disabilities. The project supports the capacity of local authorities to close down institutions and to develop alternative services for children through the social protection system. Children with disabilities are involved in the assessment of activities carried out within the project, and their opinions are taken into account when the placement centres where they reside are in the process of being closed.
25. In Sweden, in order to promote the full participation and equality of children with disabilities, all institutional accommodation has been phased out, replaced by alternative forms of community-based financial support and targeted services, developed to enable children with disabilities to live independently. The Försäkringskassan administers targeted social insurance for parents who have children with disabilities, in addition to the regular financial support provided under the social insurance system.
B. Freedom from abuse, exploitation and violence
27. While data remain scarce and unsystematic, there is widespread evidence that women and girls with disabilities are more likely to be subjected to violence, including sexual violence.19 Children with psychosocial or intellectual disabilities are among the most vulnerable, with almost five times the risk of sexual violence than their non-disabled peers.20 Girls with disabilities are particularly vulnerable, as they are often the target of violence and other harmful practices adopted within the family, communities and institutions. In many countries, girls with disabilities are at greater risk of infanticide, and vulnerable to other intersecting forms of risk associated with their specific situation or identity, such as in the case of girls living in institutions, in situations of conflict or migration, or those with albinism.
IV. Empowerment through inclusive education
A. Inclusive education as a multiplier right
41. Viewed in this light, the right to inclusive education is a multiplier right. In its general comment No. 4 (2016) on the right to inclusive education, the Committee on the Rights of Persons with Disabilities explained that inclusive education was to be understood as a means of realizing other human rights and, in particular, the primary means by which persons with disabilities could lift themselves out of poverty, obtain the means to participate fully in their communities and be safeguarded from exploitation. It was also the primary means of achieving inclusive societies. By the same token, when access to inclusive education is denied, the disempowering impact extends beyond the right to education. For instance, the lack of inclusive education has been a major driving force behind the institutionalization of children with disabilities; in the absence of inclusive schools in the community, parents are often compelled to place their children in an institution with the misconceived expectation that they receive at least some form of education.
V. Conclusions and recommendations
52. In the light of the above conclusions, the United Nations High Commissioner for Human Rights recommends that States and other stakeholders:
(d) Adopt a strategy and action plan for deinstitutionalization involving systematic transformation, including the development of community-based support services and peer support networks, covering support for families to uphold the right of children with disabilities to grow up in their family or in a family-based setting, and to participate and be included in the community;
