Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD), focuses on the provision (and right) that all disabled people have the right to live and participate in the community.
This includes people living with any type of dementia, and easily justifies why it is no longer (and never was) appropriate to segregate and house people with dementia in ‘secure dementia units’ or in ‘dementia villages’.
No matter what stage of dementia a person is at, it is up to providers to find lawful and ethical ways to support someone to live in assisted accommodation, within the framework of the CRPD. It is important to note, under this article, a village, exclusively for people with dementia is still a form of segregation, and does not equate to autonomous and full participation in the community, as perceived and experienced by others.
Article 19 – Living independently and being included in the community
States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
- a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
- b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
- c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.
This is the rhetoric, and the law… but what happens in practice? The following excerpts from two relevant websites consider the importance of inclusion, and the monitoring of Article 19.
The United Nations Convention on the Rights of Persons with Disabilities (CRPD) aims to change attitudes and approaches to persons with disabilities so they are viewed as decision-makers, leaders, and equal members of society. Yet, what does this inclusion look like? Kerry Thompson, DRF Information & Program Coordinator, shares best practices for enabling the participation of activists with disabilities.
Social change cannot happen without inclusion and inclusion cannot happen without social change. This dynamic is the hallmark of the global disability rights movement especially after the UN Convention on the Rights of Persons with Disabilities (CRPD) entered into force in 2008. People with disabilities should not be seen as a population to be pitied or as the mere beneficiaries of charitable giving. Instead, people with disabilities need to be viewed as advocates, leaders, decision-makers, panelists, keynote speakers, and conference attendees.
When the Disability Rights Fund (DRF) was established in 2008, the governance structure was constructed to follow the philosophy of “nothing about us without us”
That meant that people with disabilities would be represented on DRF’s staff, board, grantmaking committee and advisory panel. Read the full article here…
We must ask why are people with dementia only on advisory panels, and I therefore respectfully ask:
- Where are the people with dementia who are employed?
- Where are the people with dementia on the boards of all advocacy organisations?
- Where are the people with dementia who are in senior decision-makers roles?
- We have many leaders (dementia advocates and activists), but why are we not yet treated as equal members of society?
This next article is on the monitoring of Article 19 of the CRPD, always an important part of any policy, law or convention.
One of the central aims of the project on the transition from institutional care to community based support for persons with disabilities is to develop and populate human rights indicators to enable the assessment of the fulfilment of Article 19 of the CRPD. This builds on FRA’s experience of developing human rights indicators on the right to political participation of persons with disabilities. As with all FRA’s work on indicators, the project uses the ‘structure-process-outcome’ framework(link is external) developed by the United Nations Office of the High Commissioner for Human Rights (OHCHR).
The indicator matrix available below was developed by FRA and refined on the basis of input gathered during extensive consultation with relevant stakeholders. Initial discussions on key elements and issues to be incorporated in human rights indicators on Article 19 of the CRPD took place during a workshop hosted by FRA on 20 November 2014.
The time is now for us all to rethink dementia and aged care, within the framework of the CRPD, and of disability and human rights.
Ps. My recipe blog went live again yesterday, with a delicious new Warm Pumpkin Salad recipe!