Human Rights in Ireland is delighted to welcome this guest post from Aine Sperrin. Aine is a PhD student at the Centre for Disability Law and Policy, NUI Galway, where her research focuses on achieving the right to independent living for people with intellectual disabilities in post-conflict states. This blog has been written by Aine in a personal capacity and does not represent the opinions or positions of any organisation with which she is associated.
This year marks the tenth anniversary of Ireland signing the United Nations Convention on the Rights of Persons with Disabilities (CRPD). This landmark has been seized upon by disability advocates to highlight the delay in recognition of their rights. It has prompted a resurgence of rights awareness and reignited a public discussion on the standards of services and lack thereof for persons with disabilities.
Independent living is an activity which the majority of us perform every day. It is fundamentally based on utilising the resources and supports necessary to live our daily lives in the way which we see fit. The concept evolved when patriarchal, segregated medical models of disability services were rejected by persons with disabilities in the 1960s in the United States. The ethos of the Independent Living Movement demanded choice and control over one’s own services and recognition of society creating disabling barriers.
While all human rights apply non-discriminatorily to everyone, persons with disabilities do not enjoy their fundamental human rights on an equal basis with others. The recognition of these inequalities prompted the United Nations to draft a disability specific Convention. The CRPD does not create any new rights. It provides a framework for existing civil, political, social, economic and cultural rights to be implemented for persons with disabilities.
Article 19 of CRPD relates to independent living and community participation. It provides significant detail into what actions States should take to achieve independent living.
‘States Parties to this 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.’
Alongside the actual text of Article 19, there are numerous guidance documents from international human rights bodies. These include the 2017 annual thematic report on independent living from the Office of the High Commissioner for Human Rights, research by the European Union Agency for Fundamental Rights and most specifically to this discussion General Comment No 5 from the Committee on the Rights of Persons with Disabilities.
United Nations General Comments provides in-depth guidance by a Treaty Monitoring Body on a particular issue. CRPD General Comment No. 5 recognises the historic deprivation of choice and control in the lives of persons with disabilities. It reinforces persons with disabilities as rights holders but recognises the continuing social exclusion arising from disability. The interdependence of civil and political rights with economic, social and cultural rights enshrined in Article 19 is highlighted as well as the protection for the right to independent living and community participation by other human rights treaties. Article 19 can provide a supportive role to the international development agenda and Sustainable Development Goals by ensuring accessibility of sustainable cities and human settlements.
The Comment notes the progress made in realising Article 19 by numerous states to date but identifies the barriers which remain. These include denial of legal capacity which limit decision making about living arrangements, inadequacy of social support and protection to facilitate independent living. Likewise at a national level inadequate legal frameworks and budgets, the continuation of institutionalisation and lack of deinstitutionalisation strategies also contribute to preventing full participation in communities. At community levels attitudinal barriers, inaccessible public services, lack of monitoring of Article 19 initiatives, continued segregation of disability issues and inconsistencies in rural/urban experiences contribute to preventing enjoyment of Article 19 for persons with disabilities.
The General Comment focuses in detail on each aspect contained within Article 19. The discussion on Article 19 (a) suggests that the enjoyment of the right to independent living goes further than merely conducting daily activities. Independent living entails exercising choice and control in all aspects of daily life. The General Comment acknowledges that the physical building an individual occupies does not equate to independent living where there are restrictions imposed regarding living arrangements, segregation from the community and a disproportionate amount of persons with disabilities resident within a setting.
Personal assistance provided for by Article 19 (b) should be an option to avail of disability services in which the individual can act as an employer themselves. It is also possible to contract out the role of the employer. The elements required for CRPD compliant personal assistance are provision of funding based on individual criteria, control of the service by the individual and the maintenance of a one-to-one relationship with the assistant. Appropriate supports should be provided to facilitate communication of direction of personal assistance services.
Accessibility of non-disability specific facilities which are available to the general population is contained within Article 19 (c). These include facilities where commercial, educational, transport, and social activities occur. Community development must accompany deinstitutionalisation programmes in order to be successful. Residential properties which are accessible and adaptable should be made available in the community, must be of a variety to facilitate individuals and families and must also be affordable.
Arguments by States of the inability of some persons with disabilities to live independently due to high support needs are incompatible with Article 19. The enjoyment of the right to live independently across gender, age, sexuality, ethnicity, race, refugee and asylum status, religious belief and linguistic minority is highlighted. Economic considerations cannot take precedence over the human rights of the individual.
The provision of choice and access to information on choices are central elements to accessing independent living in a CRPD compliant manner. Connected to this is recognition of legal capacity to have choices and decisions respected as enshrined in Article 12 CRPD. The recognition of persons with disabilities as rights holders when accessing individualised support rejects the medical and charitable models of service provision.
The State is obliged to immediately implement the right to choose one’s place of residence as this is a civil-political right. The socio-economic rights to individualised support must be realised progressively. The state must not act in such a way to violate Article 19 and it must protect the individual from violations from families, third parties or entities. It must also promote the right to independent living through all of its statutory functions such as judicial, budgetary and administrative. The General Comment also highlights the interdependence of Article 19 on the fulfilment of other CRPD provisions such as the rights to non-discrimination, accessibility, education and awareness raising. Steps to be taken at a national level are clearly outlined. The provision of adequate resources for independent living, consultation with persons with disabilities on deinstitutionalisation strategies, tackling negative attitudes and monitoring deinstitutionalisation strategies are among the recommendations which Ireland could benefit from the most.
Independent living as outlined in the General Comment No. 5 is the gold standard for which Ireland should be aiming. There are worrying developments in relation to how alternative appropriate supports are not being devised and delivered alongside the process of deinstitutionalisation in Ireland today. At a Department of Health public consultation on personalised budgets which I attended on 11th October 2017 the importance of choice and control was high on the agenda. Self-advocates, families and representatives of the disability sector highlighted that when there are no services available, that choice remains theoretical. Assessments of need are provided with no guarantee of the needs being addressed. This is a reality in pre-CRPD ratification Ireland. The Taskforce on Personalised Budgets heard this. There is ample guidance from expert bodies. The State must capitalise on the wealth of international expertise on how to approach independent living for persons with disabilities.