ENIL’s key definitions on Independent Living

These definitions are intended for use in the development of guidelines, policy and legislation at European Union level, Member State level and local level. They are to give decision makers clear guidance for the design and implementation of disability policy. They have been developed to prevent manipulation and the misuse of our language in the production of counter-productive policy.

The concept of Independent Living (IL)[1] is much older than the UN Convention on the Rights of Persons with Disabilities (‘CRPD’) and has surely played a part in the adoption of the CRPD, including Article 19 and all the other articles that make Independent Living a human right. Article 19 covers having the right to choose as to 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 to have the freedom of choice and control over one’s own life and lifestyle.[1] Independent Living derives from the Independent Living-movement that started late 1960s in Berkeley, California as a grassroots movement.

Independent Living (IL):IL is the daily demonstration of human rights based disability policies. IL 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 choices and decisions regarding where to live, with whom to live and how to live. Services must be accessible to all and provided on the basis of equal opportunity, allowing disabled people flexibility in our daily life. IL requires that the built environment and transport 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 IL is for all disabled persons, no matter the level of support need Personal Assistance (PA):PA is a tool which allows for IL. PA is earmarked cash allocations for disabled people, the purpose of which is to pay for any assistance needed.  PA should be provided on the basis of individual needs assessment depending on the life situation of each individual and in consistency with the domestic labour market. Disabled people must have the right to recruit and manage our assistants and choose the employment model which is most suitable for our needs. PA 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 (DI):DI is a political and social process which provides for the shift from institutional care and other isolating and segregating settings to IL. Effective DI occurs when a person placed in an institution is given the opportunity to become a full citizen and take control of his/her life (if necessary, with support). Essential to the process of DI is the provision of affordable and accessible housing in the community, access to public services, personal assistance, and peer support.   DI is also about preventing institutionalization 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)

Development of CBS requires both a political and social approach and is enshrined in policy measures for making all public services, such as housing, education, transportation, health care and others, available and accessible to disabled people in mainstream settings. CBS refers to the provision of appropriate accommodation to ensure that disabled people can access mainstream services and opportunities and live as equal citizens. CBS eliminate the need for parallel services, such as institutions, special schools, long-term hospitals for health care, para-transit facilities for transport, sheltered jobs etc. Group homes are not IL, nor CBS.

Adopted November 2012 by the ENIL board

14.12.2012