Hijacked Language and Disability Policy

1. Hijacked Language and Disability Policy ENIL- European Network on Independent Living Kapka Panayotova – Member of the Board

2. Key IL Notions: • Self-determination; • Freedom of choice; • Control over one’s own life and lifestyle.

3. Interpretations: • Vested interests need to be maintained! • Any service for disabled people is named for IL, including institutional care • Traditional approaches and practices are kept intact

4. The Purpose • To give decision makers clear guidance for the design and implementation of disability policy. • To prevent manipulation and misuse of our language in the generation of counter-productive policy.

5. Key Definitions • Independent Living (IL) • Personal Assistance (PA) • De-institutionalisation (DI) • Community-based Services (CBS)

6. Independent Living (IL) Daily demonstration of human rights based disability policies and serves the basic human right of disabled people to have control over their own lives and the opportunity to make choices and decisions for themselves.

7. Independent Living (IL) • Services must be accessible to all and provided on the basis of equal opportunity, allowing disabled people flexibility in their daily life. • Built environment and transport are accessible, that there is availability of technical aids, access to personal assistance and/or community-based services

8. IMPORTANT!!! IL is for all disabled persons, no matter the level of support need

9. Personal Assistance (PA): 1. PA is a tool which allows for IL. 2. Earmarked cash allocations to pay for any assistance needed - salaries of personal assistants and other performance costs, contributions due by the employer, administration costs and peer support. 3. Provided on the basis of individual needs assessment depending on the life situation of each individual and in consistency with the domestic labour market.

10. Deinstitutionalisation (DI): A political and social process which provides for the shift from institutional care to living in the community with support (if such is needed).

11. Essential to the process is: • Provision of affordable and accessible housing in the community, • Access to public services, • Personal assistance, and peer support.

12. Community-based Services (CBS) • Development of CBS requires both a political and social approach; • Policy measures for making all public services – housing, education, transportation, health care and others – available and accessible to disabled people in mainstream settings.

13. IMPORTANT!!! CBS eliminate the need for parallel services, such as institutions, special schools, long-term hospitals for health care, paratransit facilities for transport, sheltered jobs etc. Group homes are not IL, nor CBS.

14. Disability Policy • Based on support vs. care; • Prevalence of IL over traditional care by LEGISLATION: inclusive education; accessibility of all public services; housing options; • Awareness raising campaigns run by IL organisations to change of public attitudes.

15. PERSONAL ASSISTANCE It’s a M U S T! • Portable between countries, regions and cities; • with PEER SUPPORT, and • based on individual needs with no income tests

16. FUNDING • Money for IL at least as much as for traditional services • IL organisations receive public funds • Mainstream public services (not special facilities!) receive earmarked funding for accommodation of disabled people’ needs • IL organisations are involved in monitoring and evaluation of the disability policies.

17. THANKS! Hope this time it finally works!!!