Common European Guidelines on De-institutionalisation and Toolkit on the use of Structural Funds Based on the presentation of Ines Bulic, Researcher European Expert Group

Background Report of the Ad Hoc Expert Group (so-called Spidla’s Report), 2009 European Expert Group on the Transition from Institutional to Community-based Care (EEG) Advising European Commission (DG Employment and DG Regional Policy) on the use of Structural Funds

Membership Confederation of Family Organisations in the EU (COFACE) Eurochild European Network on Independent Living (ENIL) - European Coalition for Community Living (ECCL) European Disability Forum (EDF) European Association of Service Providers for People with Disabilities (EASPD) European Social Network (ESN) Inclusion Europe Lumos Mental Health Europe UNICEF / OHCHR

Common European Guidelines Project Objectives Offer expertise and advice to Member States and EU institutions Gather and promote practical examples of good practice Ensure that EU and national policies and funding mechanisms support DI Raise awareness about the right to live in the community at EU level Encourage Member States to fully involve user groups

Project Outputs Common European Guidelines (common = children, people with disabilities, people with mental health problems, older people) Toolkit on the use of Structural Funds Training module Mutual learning events in Finland, Lithuania, Bulgaria and Croatia Training session for the European Commission

Target groups Politicians and civil servants in Member States European Commission and Member State officials (Structural Funds) EU level officials (Social Agenda) Local authorities Service providers NGOs and disabled people’s organisations advocating for change

Guidelines Chapters Executive Summary Introduction and preface Definition of the key terms Moving from institutional care to community-based services Making the case for developing community-based alternatives to institutions Developing strategies and action plans Analysing the situation Developing community-based services Allocating financial, material and human resources Developing individual plans Preparing the individuals and communities for the transition Defining, monitoring and evaluating the quality of services Developing the workforce Establishing the legal framework for community-based services Frequently Asked Questions

Introduction Key principles highlighted: – Vision – Engaging with civil society – Stakeholder involvement – Leadership for change

Hunt Report Hunt, P. : Report of the Special UN Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health. E/CN.4/2005/51, 11. February Hunt 2005 odvodil z práva na zdraví právo na začlenění do komunity (right to community integration): „Segregation and izolation of the people with mental health problems is in a conflict with a right for health and secondary right of to be integrated in the community“.

Human right framework UN Convention on the Rights of Persons Disabilities (CRPD). Art.19: Living independently and being included in the community  live in the community- with needed assistance  full inclusion and participation – accessibility of the services for general public  choices equal to others:  with whom to live  where to live

Obligation coming up from CRPD To respect, protect and fulfill a right of people with disability to live in the commuity. To respect right of living in the community states can not institutionalised any person becouce of their disability. To fulfil and obligation of the rights living in the community states has to close down institutions and transforme then to the community seervices. State is obligated to assure a rights guarantie in CRPD can be fully „consumed“

Definitions No size-based definition of institution – instead, definition of institutional care De-institutionalisation Alternative care, including difference between family-based and family-like care (based on UN Guidelines) Community-based services and Independent Living User groups

Toolkit on the use of Structural Funds To help those involved in the programming and implementation of Structural Funds (and other EU funds) ensure they support the transition to community-based services Targeting desk officers at EC, managing authorities, intermediate bodies, monitoring committees and project promoters in EU MS, acceding, candidate and potential candidate countries

Main principles Understanding what de-institutionalisation is about Strong case for the use of EU funds to support development of community-based alternatives to institutional care – EU Charter and CRPD – Better use of taxpayers’ money – Evidence of misuse Supporting structural change Supporting sustainable reforms Deinstitutionalisation = social innovation

Legal context Regulations for the use of Structural funds in years 2014 – For the first time in history the European Union (EU) has put regulations in place which make it clear that EU Structural Funds should be spent on the transition from institutional to community based care. This regulation will come into force on 1 January 2014 and will last for seven years. This is a significant achievement that will benefit hundreds of thousands of children and adults in Europe.

Implications of CRPD Instruments developed based on separate provisions of CRPD For monitoring, assessing the situation on human rights and health care quality Recommending ways forward to promote, protect and realize rights of PWMD

Instruments developed and based on the CRPD provisions ITHACA WHO QualityRights toolkit European Guidelines for deinstitutionalisation

What is ITHACA? “Institutional Treatment, Human Rights And Care Assessment” (ITHACA) 3 year international study on human rights and general health care in psychiatric institutions. Funded by one division of the European Commission (PHEA). 16 countries involved: Coordinated by King’s College in London. Started in 2007 and lasted until end of 2010.

What ITHACA produced The purpose of ITHACA was to develop a systematic assessment of two important components of psychiatric institutions - human rights and general health care. During the project monitoring tool was developed and tested. Researchers involved in developing the monitoring tool, as well as testing it via monitoring visits came from a number of different disciplines including law, social sciences, psychology and psychiatry. The tool was applied/tested in six institutions in each country. The data from the total of 96 institutions provide the picture of the conditions in mental health services across Europe.

Monitoring tool/Content Background / statistical information to be collected before the monitoring – Context (background research) – Residents – Staff – Organization/ Rules Location, Material/ Physical Conditions of Institution Admission Criteria and Procedures Access to Community Privacy/ Home/ Family Access to Information Health Care – Prevention – Diagnosis – Treatment Consent to Treatment Decision making: supported vs. substituted Protections from torture, inhuman, cruel and degrading punishment and exploitation, violence and abuse Education Work and Employment Discharge

Aim of the WHO QualityRights tool kit to support countries in assessing and improving the quality and human rights of their mental health and social care facilities. The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is the basis for human rights standards that must be respected, protected and fulfilled in facilities.

Five themes, drawn from the CRPD, are covered by the tool kit The right to an adequate standard of living and social protection (Article 28) The right to enjoyment of the highest attainable standard of physical and mental health (Article 25) The right to exercise legal capacity and the right to personal liberty and the security of person (Articles 12 and 14) Freedom from torture or cruel, inhuman or degrading treatment or punishment and from exploitation, violence and abuse (Articles 15 and 16) The right to live independently and be included in the community (Article 19)

Each of the ‘themes’ or ‘rights’ outlined above is broken down into a series of ‘standards’, which are further broken down into a series of ‘criteria’. The criteria form the basis of the quality and human rights assessment.

Thank you Lithuanian forum for the disabled Dovilė Juodkaitė