The Committee on the Rights of Persons with Disabilities has recently adopted a General Comment, i.e. its interpretation of the right to living independently and being included in the community, which is enshrined in article1 9 of the United Nations’ Convention on the Rights of Persons with Disabilities (CRPD).
What is the right to living independently and being included in the community?
Article 19 of the CRPD recognises the right for persons with disabilities to retain the freedom to choose and control their lives. It creates an obligation on States to ensure the full enjoyment of this right by enabling persons with disabilities to choose their place of residence and where and with whom they live on and not oblige them to live in a particular living arrangement; make available a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community; and ensure that the community services and facilities for the general population are equally accessible and responsive to the needs of persons with disabilities.
Why is the General Comment important for older people?
Although not all older people have a disability, the likelihood of acquiring a disability increases with age. This General Comment gives guidance on how to guarantee the rights defined under article 19 of the CRPD. Its content is very helpful to define what States must do to allow older people who need care and assistance to retain control over their lives and to remain included in their communities. Sometimes older people are segregated in care homes that are situated in the outskirts of cities or in isolated areas, which do not allow them to participate in the life of their community and to easily interact with others. In addition, older people may not have the choice to remain at home, due to lack of support services at home. In such cases, older people may be obliged to enter into residential care against their wishes. These and other issues are regulated by the General Comment, which sheds a light on practices which are not compliant with the United Nations (UN) Convention.
Independent living and residential care
AGE has responded to the consultation of the CRPD Committee, commenting on a previous draft of the General Comment. One of the thorny issues for our members is whether the right to independent and community living is compatible with residential care. Whereas the majority of older people wish to continue living in their own homes, there are still older people who – in full use of their mental capacities and freedom – want to live in residential settings. This is a life choice and sometimes part of a life plan about how and where one wants to spend the rest of their life in old age. For example, some older people prefer living in residential settings than alone in their own homes. AGE members believe that this choice should be respected.
The General Comment calls on Member States to move resources from institutional to community care. However, for the UN Convention not all residential care homes are considered “institutions”. On the contrary institutionalisation refers to services, which do not respect the individual freedom of the people who require support and which lead to their segregation. AGE is therefore pleased that the General Comment does not conflate all residential settings with institutions, although at this stage the Committee does not go as far as to explain what residential care should look like.
It is however positive that the Committee accepts that institutionalisation may also take place in individual homes, for example when there is obligatory sharing of assistants with others and no or limited influence over by whom one has to accept assistance, isolation and segregation from independent life within the community, lack of control over day-to-day decisions, lack of choice over whom to live with, rigidity of routine irrespective of personal will and preferences, identical activities in the same place for a group of persons under a certain authority, a paternalistic approach in service provision, supervision of living arrangements and usually also a disproportion in the number of persons with disabilities living in the same environment.
The Committee moreover agrees that closing down institutional settings is not enough; Structural reforms are necessary to ensure that there is appropriate and adequate care but also accessible services of general interest in the community. In addition, support services must leave no space for potential abuse, exploitation of persons with disabilities or any violence against them.
The obligation of non-discrimination
The General Comment also highlights that discriminatory practices, such as the exclusion of individuals or groups from the provision of certain services, is prohibited. This is particularly relevant for older people as in several countries age limits impede older people from accessing certain services and benefits that are available to younger people with disabilities. It moreover clarifies that States may establish specific services for older persons with disabilities to better cater for their needs and particular circumstances. AGE wants to highlight that this differential treatment must not be used as an excuse to give less support to older persons with functional limitations.
Overall AGE welcomes this General Comment and is very satisfied with several improvements made to previous draft, taking into account AGE’s views. We believe that the adopted text is better placed to address the challenges faced by older people with disabilities in equally enjoying their human rights.
What can you do?
The General Comment includes an obligation for decision-makers at all levels to actively involve and consult organizations of older persons with disabilities. AGE members may want to become familiar with the General Comment, which is useful tool that they can exploit in order to ask for an enhanced support for disability in older age in their countries. They could also remind State officials that they must engage with older people’s organisations when they undertake disability-related reforms and measures.
If you have any question about Article 19, the General Comment or what you can do to apply these provisions in your country, you may contact Nena Georgantzi, nena.georgantzi@age-platform.eu
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