ENIL’s key definitions on Independent Living
These definitions are intended for use in the development of guidelines, policy and legislation at the European Union level, Member State level and local level. Their aim is to give decision makers clear guidance for the design and implementation of disability policy. They have been developed to prevent the manipulation and the misuse of our language for the development of policies that are counter-productive to Independent Living.
The concept of Independent Living (IL) is much older than the UN Convention on the Rights of Persons with Disabilities (‘CRPD’). It has played a key part in the drafting of the CRPD, especially Article 19, but is also underpinning other articles, none of which can be realised without IL. Article 19 sets out the right to choose where, with whom and how to live one’s life. This allows for self-determination upon which IL is based. There is a continuous debate on independence vs. interdependence; ENIL considers that all human beings are interdependent and that the concept of IL does not contravene this. IL does not mean being independent from other persons, but having the freedom of choice and control over one’s own life and lifestyle.
Independent Living (IL):
Independent living is the daily demonstration of human rights-based disability policies. Independent living is possible through the combination of various environmental and individual factors that allow disabled people* to have control over their own lives. This includes the opportunity to make real choices and decisions regarding where to live, with whom to live and how to live. Services must be available, accessible to all and provided on the basis of equal opportunity, free and informed consent and allowing disabled people flexibility in our daily life. Independent living requires that the built environment, transport and information are accessible, that there is availability of technical aids, access to personal assistance and/or community-based services. It is necessary to point out that independent living is for all disabled persons, regardless of the gender, age and the level of their support needs.
Personal Assistance (PA):
Personal Assistance is a tool which allows for independent living. Personal assistance is purchased through earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed. Personal assistance should be provided on the basis of an individual needs assessment and depending on the life situation of each individual. The rates allocated for personal assistance to disabled people need to be in line with the current salary rates in each country. As disabled people, we must have the right to recruit, train and manage our assistants with adequate support if we choose, and we should be the ones that choose the employment model which is most suitable for our needs. Personal assistance allocations must cover the salaries of personal assistants and other performance costs, such as all contributions due by the employer, administration costs and peer support for the person who needs assistance.
Deinstitutionalisation is a political and a social process, which provides for the shift from institutional care and other isolating and segregating settings to independent living. Effective deinstitutionalisation occurs when a person placed in an institution is given the opportunity to become a full citizen and to take control of his/her life (if necessary, with support). Essential to the process of deinstitutionalisation is the provision of affordable and accessible housing in the community, access to public services, personal assistance, and peer support. Deinstitutionalisation is also about preventing institutionalisation in the future; ensuring that children are able to grow up with their families and alongside neighbors and friends in the community, instead of being segregated in institutional care.
Community-based Services (CBS):
The development of community-based services requires both a political and a social approach, and consists of policy measures for making all public services, such as housing, education, transportation, health care and other services and support, available and accessible to disabled people in mainstream settings. Disabled people must be able to access mainstream services and opportunities and live as equal citizens. Community-based services should be in place to eliminate the need for special and segregated services, such as residential institutions, special schools, long-term hospitals for health care, the need for special transport because mainstream transport is inaccessible and so on. Group homes are not independent living and, if already provided, must exist alongside other genuine, adequately funded independent living options.
* ENIL prefers the term ‘disabled people’ over ‘persons with disabilities’ or ‘people with disabilities’, in order to reflect the fact that people are disabled by the environmental, systemic and attitudinal barriers in society, rather than by their impairment. This is in line with the social model of disability.