If forms of residential care exist in your country, are there any alternatives to institutions and do people with disabilities have choice and control over the services they use?
The question is about whether people with disabilities in your country are able to choose between different types of services in the community, or some people have no option but to live in an institution. Safeguards should exist to ensure that no one is placed into residential or institutional care unless this is their own preference. People living in institutions should be provided with the necessary support to move back into the community. No one should be forced to live in an institution just because there are no other alternatives available to the community, or because this is their families’ preference.
41% of respondents state that institutions are the predominant forms of care and people with disabilities have partially the choice to control over the services they use. This is due to barriers such as:
- Lack of financial resources, government cuts or poverty have been jeopardizing the opportunity for other types of care for PWDs: alternatives such as private care and insurance are available as long as people can afford them, as in most cases, they are more costly than residential care institutions. Due to poverty many PWDs prefer to stay in these institutions
- The lack of or replaced decision-making have a heavy impact on PWDs’ choice on alternatives to institutions. People with psychosocial disabilities face the only option of living with family due to social stigma and family pressures to put PWDs in care centres
There are however, community-organised, initiatives led by volunteers and a culture of “home support” that offer alternatives to institutions. Other alternatives include semi-autonomous or self-determined living options in institutions, but are still under the authority of the institution. The issue is that these options are difficult to manage, not very available, poorly financed, not well supervised and are costly. The National Housing Strategy for People with a Disability 2011-2016 in Ireland for instance, aims establishing a framework for housing for people with disabilities through mainstream housing policy. It aims to facilitate access for housing and related support services sustainably to promote equality of opportunity, individual choice and independent living.
“We have therefore become an unofficial ‘Home” helping each other, and created a free membership base in the community through which we now assist other persons with disabilities in the community, who do not have help such as ourselves. This has also been achieved with the assistance of professional medical volunteers, such as Orthopedic Specialist Surgeons, Therapists, Clinical & Medical Social Workers and the recent Adoption of our NPO by a Group of Attorneys, and a lot of perseverance and innovation by ourselves to achieve this goal, excluding future goals.” (Leonard-Marque Pretorius, CEO of Victory Over Disability Homes, South Africa) “The municipality responsible for organising the service has the final say on the form and content of the service. Eg personal assistant schemes exist but is up to the municipality to decide which of the existing range of services it offers the disabled person”(Pirkko Mahlamäki, secretary general, Finnish Disability Forum, Finland) “Some disabled people avoid being institutionalized by renting a big flat of 2 assistant living in there for rent free (in return helps). Often parents/family are caretakers of 24/7 receiving only 19 € per month if care-taking does not allow to work” (Sven Kõllamets, specialist, Tallinn University of Technology, Estonia)
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.”
(UN Convention on the Rights for Persons with Disabilities)