Secondary Literature

The following literature has played an important role in building a solid base from which institutionalisation or any segregated living arrangement no longer has a place in the legal, social or economic order of the European Union.

  • Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care‘ 2009 Director General for Employment, Social Affairs and Equal Opportunities here

This report puts forward the case for the transition from institutional to community based care highlighting the challenges of transition, how to address them and recommendations for Member States and the European Commission.

  • ‘Focus on Article 19 of the UN Convention on the Rights of Persons with Disabilities’ August 2009 ECCL Focus Report here

This report focuses on Article 19 of the UN Convention on the Rights of Persons with Disabilities (CRPD) that lays down the right of all persons with disabilities to live and participate in the community. This report provides a clear explanation of the scope and purpose of Article 19, key steps and challenges as well as a series of thorough recommendations designed to facilitate the effective implementation of this right.

  • ‘Forgotten Europeans Forgotten Rights’ 2010 The United Nations Office of the High Commissioner for Human Rights (OHCHR) Regional Office for Europe here

This report highlights the placement of children, persons with disabilities and older persons in long-stay residential institutional care often for life across Europe.  It was the first in a serious of OHCHR reports intended to bring attention to institutionalisation and stimulate discussion for the need to develop community based alternatives.

  • ‘Wasted Time, Wasted Money, Wasted Lives … A Wasted Opportunity?’ March 2010 ECCL here

This Focus Report details how the use of Structural Funds in the 2007 – 2013 programming period perpetuated the social exclusion of disabled people in Central and Eastern Europe by failing to support the transition from institutional care to community-based services. The report ends with recommendations on using the funds to promote community living. Annex 2 contains a selection of Human Rights Reports on people with disabilities in long stay residential institutions in Central and Eastern Europe.

  • ‘Creating Successful Campaigns for Community Living: An advocacy manual for disability organisations and service providers’ Revised edition 2011 ECCL here

First published in 2008 and revised in 2011 the purpose of this manual is to assist individuals and organisations who want to achieve the changes that are needed to ensure that people with disabilities can participate in community life as equal citizens.  It provides information and advice on how to conduct campaigns and other activities to attain the goal of community living for all people with disabilities.  Annex 2 of the manual details European and international policies relevant to advocacy for community living particularly the European Disability Strategy 2010-2020 as well as the proposed changes to the Structural Funds Regulations for the 2014-2020 funding period.  Annex 3 details advocacy case studies.

    • Gerard Quinn & Susanne Doyle (2012) Getting a Life: Living Independently and being included in the Community. United Nations, Office of the United Nations Commissioner for Human Rights European Office here

A detailed Legal Study on the 2007 – 2013 programming period, the EU as a party to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) and the future potential of the 2014-2020 programming period to contribute to the achievement of Article 19 CRPD.

Open Society Foundations ‘The European Union and the Right to Community Living – Structural Funds and the European Union’s Obligations under the Convention on the Rights of Persons with Disabilities’ May 2012 Mental Health Initiative Open Society Public Health Program.

The focus question of this report is whether the use of Structural Funds to build new, or renovate existing, long-stay institutions for people with disabilities, rather than develop alternative services that promote community living is contrary to EU law.  The report finds that the Investment of Structural Funds in institutions is contrary to EU law as it constitutes a breach of the EU’s international legal obligations (CRPD and ECHR) and amounts to disability discrimination under EU law.

  • EU Fundamental Rights Agency, ‘Choice and Control: the right to independent living’ June 2012.  Find the full report, summary and easy to read version here.

This report examines how persons with intellectual disabilities and persons with mental health problems in nine EU Member States – Bulgaria, Germany, France, Greece, Hungary, Latvia, Romania, Sweden and the UK – experience autonomy, inclusion and participation in their lives.  The results show that although much has been done, more efforts are needed to ensure that persons with mental health problems and persons with intellectual disabilities have more choice and control over their lives and are included in the community on an equal basis with others.  Most efforts to date have focused on deinstitutionalisation, but to achieve true independent living they should be accompanied by a range of social policy reforms in the areas of education, healthcare, employment, culture and support services. Key initiatives in policy, law and practice, identified in this report, can facilitate progress towards realising the right to independent living of persons with disabilities throughout the European Union.

Find a list of all FRA reports and information material on the rights of persons with disabilities including children with disabilities from 2010-2015 here.

        • Gerard Quinn and Suzanne Doyle, ‘Taking the UN Convention on the Rights of Persons with Disabilities Seriously: The Past and Future of the EU Structural Funds as a Tool to Achieve Community Living’ The Equal Rights Review Vol. 9 (2012) here
        • This Article analyses the obligations of the EU in respect to disability rights at the critical stage of adopting the new legislative framework for the 2014-2020 funding period.  It states clearly what must be done to realise the ‘paradigm shift’ namely, the move from the medical to the social model of disability, particularly through the proper regulation of the EU’s structural funds.
        • Camilla Parker and Luke Clements ‘The European Union Structural Funds and the Right to Community Living’ The Equal Rights Review Vol. 9 (2012)  here

This Article is based on the Open Society Foundations report of May 2012 above.  It argues that institutionalising persons with disabilities is a form of discrimination that deepens their disadvantage, and that there should be no excuse in allowing European Union funds or indeed any public funds to be used to perpetuate this form of discrimination.

      •  Georgette Mulheir ‘Deinstitutionalisation – A Human Rights Priority for Children with Disabilities’ The Equal Rights Review Vol. 9 (2012) here

This Article evidences the impact of institutionalisation on children in Europe drawing on the results of Lumos’ research into placements of children in residential institutions highlighting the linkages of disability, ethnicity and poverty.  It explores the human rights legislative and policy framework underpinning institutionalisation assessing some of the most recent advances in policy and action to address the issue.  Recommendations for transforming systems of health, education and social protection services for children and families in order to end the institutionalisation of children are made.

      • ‘Common European Guidelines on the Transition from Institutional to Community-based Care’ November 2012 European Expert Group on the Transition from Institutional to Community-based Care and the authors; written by Ines Bulić, with research and writing assistance by Liliya Anguelova-Mladenova. The draft document was edited by Lina Gyllensten and Georgette Mulheir, while Miriam Rich undertook a final edit and proofread the text.  The project was managed by Lumoshere.

Guidance on implementing and supporting a sustained transition from institutional care to family-based and community-based alternatives for children, persons with disabilities, persons with mental health problems and older persons in Europe.  The guidelines are complemented and to be used together with the Toolkit below.  Both documents are to be used by policy and decision makers at local, national and regional levels of EU Member States including politicians and senior civil servants responsible for public services, National managing authorities, monitoring committee’s and project promoters in the Member States and European Commission Officials and Desk Officers in DG Employment, DG Regional Policy, DG Enlargement and DG Agriculture.

      • ‘Toolkit on the Use of European Union Funds for the Transition from Institutional to Community-based Care’ November 2012 revised June 2014 European Expert Group on the Transition from Institutional to Community-based Care – The first editon of the toolkit was published in November 2012 and translated into twelve languages.  It was written by Silvio Grieco and Ines Bulic as part of a joint project by member organisations of the European Expert Group on the Transition from Institutional to Community based Care (EEG) and financially supported by Lumos. This revised edition was published in June 2014, in order to take account of the final version of the European Structural and Investment Funds Regulations of December 2013. It was written by Ines Bulic and Javier Guemes, with the financial support of the Open Society Foundations – Mental Health Initiative here.

The Toolkit explains HOW EU funds can support national, regional and local authorities in designing and implementing structural reforms aimed at facilitating the development of quality family-based and community based alternatives to institutional care.

        • ‘Mapping Exclusion Institutional and community-based services in the mental health field in Europe’ November 2012 Mental Health Europe and Mental Health Initiative of the Open Society Foundations authored by Agnes Kozma and Gabor Petri here.
The main focus of this report is to map long-term care for people with mental health problems in European countries, including long stay hospital care, social care institutions and community-based residential arrangements.  This report originates from a concern that people with mental health problems living in institutions are not being included in the transition to community based living.  The report evidences the lack of up-to-date information and data on de-institutionalisation initiatives particularly in regard to people with mental health problems who experience compounded disadvantage and discrimination on the basis of disability.
    • Gerard Quinn and Suzanne Doyle, ‘Marrying Principle with Power in the EU – the Test Case of the EU Structural Funds Negotiations: Update’ The Equal Rights Review Vol. 11 (2013) here.
      This Article follows on from ‘Taking the UN Convention on the Rights of Persons with Disabilities Seriously: The Past and Future of the EU Structural Funds as a Tool to Achieve Community Living’ Vol. 9 (2012) above.  An update of the ongoing negotiations for the 2014-2020 Regulations and expected climactic vote at a plenary session of the European Parliament in October 2013.  Comments are made on the adequacy of the draft Regulations text and further room for improvement.
          • Joint Memorandum ‘Community Living for All – The need to provide clarity in Thematic Conditionality 10’ October 2013 Lumos, Centre for Disability Law and Policy NUI Galway, Age Platform Europe, The Equal Rights Trust, European Disability Forum and the European Foundation Centre  here

      This joint memorandum represents a final push of the signatory organisations in strengthening and improving the draft Regulations text as it fell to the Parliament to adopt its final position in the October 2013 plenary vote before passing to the Council.  In particular the key phrase ‘depending on identified needs, includes measures for the shift from institutional to community based living’ was undefined and with no clear parameters. The joint memorandum sought to tighten the language and provisions of the European Commissions draft ex ante conditionalities guidance text closer to EU and Member State international legal obligations.

      Note: The New Regulations Thematic ex ante conditionality 9 – social inclusion was, in the Draft Regulations, Thematic conditionality 10.

      The sustained efforts of the signatory organisations to the joint memorandum were particularly successful, the ex ante conditionalities guidance final text includes substantive explanation and definitions pertaining to Thematic ex ante conditionality 9.  In particular ‘depending on the identified needs’ is defined and clarified.

      • Camilla Parker and Ines Bulic ‘Briefing on Structural Funds Investments for People with Disabilities: Achieving the Transition from Institutional Care to Community Living’ December 2013 ECCL-ENIL here

      Released at the start of Partnership Agreement and Operational Programme negotiations between Member States and the European Commission for 2014-2020.  This report highlights key problems with Structural Funds investments for people with disabilities in six Member States: Bulgaria, Hungary, Latvia, Lithuania, Romania and the Slovak Republic in the period 2007–2013. Complementary recommendations are made in line with previous ECCL and EEG reports on actions that need to be taken to ensure that such investments are not repeated in the new 2014–2020 period.

      •  Report of the Office of the United Nations High Commissioner for Human Rights  ‘Thematic study on the right of persons with disabilities to live independently    and be included in the community’ December 2014 here.

      This report is focused on the right to live independently and be included in the community, and the enjoyment, protection and promotion of that right as a substantive means for the realization of other rights, as a condition for avoiding institutionalization and segregation in health and social settings, and as a prerequisite to provide for the full development of the capabilities of persons with disabilities and their meaningful participation in, and contribution to, society.

      • The Fundamental Rights Agency, ‘Implementing the United Nations Convention on the Rights of Persons with Disabilities (CRPD) An overview of legal reforms in EU Member States’ (2015) here.

      A new Focus paper by the EU Agency of Fundamental Rights (FRA) outlines how Member States across the EU have reformed their laws and policies to meet their obligations under the CRPD. By bringing together examples of such reforms, it also highlights how the adoption of international commitments can drive wide-ranging processes of change at the national level.

      • Dr. Israel Butler ‘Community, Not Confinement: The Role of the European Union in Promoting and Protecting the Right of People with Disabilities to Live in the Community‘ (October 2015) Open Society Foundations here.

The Report examines EU law and policy governing the use of the Structural Funds together with EU and state responsibilities to human rights obligations under international and EU law.  It recommends several steps the Commission should take including providing clear guidance to Member States that projects selected for the use of Structural Funds must comply with the Convention on the Rights of Persons with Disabilities (CRPD); verifying that such programming aligns with the CRPD and supports independent living; and funding civil society to monitor Member States’ investments and, inform the Commission of findings.