Objectivos

DECIDE – Deficiência e auto-determinação: o desafio da vida independente

O projeto DECIDE tem como objetivo analisar as condições de vida e inclusão social das pessoas com deficiência em Portugal, à luz das propostas internacionais que se vêm consolidado em torno do conceito de “vida Independente”.
O projeto tem uma duração de 36 + 12 meses (junho 2016 – Maio de 2020), e conta com uma equipa interdisciplinar – sociologia, psicologia, antropologia –, coordenada por Fernando Fontes, que tem desenvolvido o seu trabalho no quadro dos estudos da deficiência.

O que é a “vida independente”?
A vida independente significa “Todas as pessoas com deficiência terem a mesma escolha, controle e liberdade que qualquer outro cidadão - em casa, no trabalho, e como membros da comunidade” (Barnes e Mercer, 2006: 33)

Resultados esperados:
Os resultados do projeto DECIDE permitirão avaliar as possibilidades e vantagens de uma transformação das condições de vida e de apoio às pessoas com deficiência em Portugal. Analisaremos os desafios à implementação de um modelo de "vida independente" na sociedade portuguesa, de forma a contribuir para uma adequada e informada redefinição das políticas de deficiência em Portugal.

Objectives

DECIDE aims at researching the different living contexts and support alternatives available to disabled people in Portugal, its impacts and opportunities.
The specific objectives guiding this research are:

1. To assess the resources and disability policies framing disabled people’s adult lives in Portugal.
2. To identify, understand and expose the failures of service provision that may reinforce disabled people’s social exclusion.
3. To investigate the costs and benefits of the different types of support available to disabled people in Portugal.
4. To assess the potential benefits Independent Living can offer to disabled people’s lives.
5. To examine the efficacy of the specific support mechanisms delivered by the Lisbon Independent Living pilot project, when compared to traditional support services, to combat disabled people’s exclusion and improve disabled people’s choice and control.
6. To formulate recommendations for policy makers, service providers and organisations to improve disabled people’s choice and control.
7. To steer public debate about the social exclusion of disabled people.
8. To reinforce Disability Studies status in the Portuguese Academia.

Methodology

Study stages:

Stage 1 – State of art - the analysis of relevant publications in the fields of disability studies, disability policies, independent living and project evaluation methodologies.

Stage 2 – Fieldwork: It is structured around 3 analytical strands and uses a multiplicity of methodologies and techniques for collecting data (interviews, focus group, survey, participant observation)

• Strands 1- Disabled people, life control and autonomy
• Strand 2 – Disabled people and conventional support
• Strand 3 – Independent living support

Stage 3 - Data analysis.

Stage 4 - Dissemination of results, production of a documentary film about the situation of people with disabilities in Portugal, preparation and writing the final report.

Funding

Project funded by the Portuguese Foundation for Science and Technology and co-funded by the European Regional Development Fund (ERDF) through the COMPETE 2020 operational program – PTDC/IVC-SOC/6484/2014 - POCI-01-0145-FEDER-016803.

Host institution

Centre for Social Studies (CES) at the University of Coimbra, Portugal.

Participating Institution

Associação dos Deficientes das Forças Armadas (ADFA)
Associação Portuguesa de Deficientes (APD)
Câmara Municipal de Lisboa (CML)
European Network on Independent Living (ENIL)

Team

Fernando Fontes (PI)

Adriano Moura

Bruno Sena Martins

Ema Loja

Joana Pimentel Alves 

Mónica Lopes

Paula Campos Pinto

Committee

DECIDE benefits from the support of renowned national and international experts who provide advice to the team at various stages of the project.

Adolf Ratzka

Adolf Ratzka founded in 1984 the Stockholm Cooperative for Independent Living (STIL). STILL became an international model of user­-led personal assistance services based on direct payment system. He is now Director of the Swedish Independent Living Institute, a policy-maker in the field of disability. Adolf Ratza is also the co­founder of the European Network on Independent Living (ENIL).

Alan Roulstone

Alan Roulstone is Professor of Disability Studies at the University of Leeds, UK. Recent and current funded work on disablist hate crime, social inclusion and employment, cooperatives and direct payments, young disabled people and assistive technology and ageing well. Funders include ESRC, Technology Strategy Board, Leverhulme Trust, European Commission and UNESCO. Professor Alan Roulstone has also an extensive expertise in the evaluation of disability policies in England.

Eduardo Jorge

Eduardo Jorge holds a BA has a Social Worker and has been a disability activist in Portugal since the 2000s. He is one of the co- founders of the disability collective (d)Eficientes Indignados – (dis)Able Indignated, and is one of the leading voices and has been at the forefront of the independent living movement in Portugal. He has co­organised and organised several on­line disability collectives and forum, as well as marches, demonstrations and hunger­strikes, in the defense of the right for independent living for disabled people in Portugal.

Ivanova Kapka Panayotova  

President of the European Network for Independent Living (ENIL), Europe's leading Independent Living advocacy organization with an extensive lobbying experience of national governments and European institutions for the implementation of Independent living, inclusion, eradication of disabling barriers, and defense of the human rights of disabled people. She was one of the founders of the Independent Living Movement in Bulgaria in the 1990s and continues to be one of the leaders of the Center for Independent Living (CIL) - Sofia, Bulgaria created in 1995. She has extensive international experience in the defense of human rights as a researcher, consultant, expert, trainer, manager and policy evaluator in different European countries. She has a master's degree in economics and has more than 20 years of experience in counseling and support in the social sector. His research addresses public policies based on human rights, disability and deinstitutionalization through inclusion in community programs, principles and practices of inclusion of people with disabilities. 

Jorge Falcato

Jorge Falcato is an Architect working at the Lisbon Municipality in the area of accessibilities for disabled people and has been a disability activist in Portugal since the 1980’s. He has collaborated with several organizations of disabled people in Portugal. More recently he has co­founded the disability collective (d)Eficientes Indignados – (dis)Able Indignated, and has been one of the voices and leaders of the independent living movement in Portugal. He is the coordinator of the Lisbon Independent Living Pilot Project.

Presentations

Publications

Short reports

Audiovisual (Documentary film)

Legislation/Politics

Lei do atendimento prioritário (Decreto-lei nº 58/2016)

Lei da não discriminação (Lei nº 46/2006, de 28 de Agosto)

Regime da acessibilidade aos edifícios e estabelecimentos que recebem público e edifícios habitacionais (decreto lei, nº 163/2006, 8 de Agosto)

Bases gerais do regime jurídico da prevenção, habitação, reabilitação e participação da pessoa com deficiência (Lei nº38/2004, 18 de Agosto).

Convention on the Rights of Persons with Disabilities

Useful links:

http://www.seg-social.pt/deficiencia

About DECIDE