Conference on autonomy and inclusion

The rights of persons with intellectual disabilities and

persons with mental health problems

Copenhagen, 7-8 June 2012

OBJECTIVES

The conference aims to:

  • raise awareness of the rights-based approach to disability;
  • provide an opportunity to share promisingpractices and learn from one another;
  • contribute to the development of practical recommendations for the implementation of the CRPD.

Participants will havean opportunity to discuss issues which are central to the implementation of the CRPD in the European Union. The reports of the European Union Agency for Fundamental Rights (FRA) will provide an overview of the situation in the EU and examples from Denmark and other Member States will illustrate the situation at national level in greater depth. Participants will have the opportunity to contribute to the development of practical suggestions for future action.

FRA WORK ON DISABILITY RIGHTS

FRA’s latest findings from its research on the situation of people with intellectual disabilities and mental health problems will be presented. The research is based on interviews - carried out in Bulgaria, France, Germany, Greece, Hungary, Latvia, Romania, Sweden and the United Kingdom. Interviews were conducted with people with actual experience of intellectual disability or mental health problems, their families and carers as well as with service providers and health, social, disability and legal professionals. The research examined past experiences of institutional care and treatment, options and challenges for independent living and access to justice for people with intellectual disabilities or mental health problems.

In addition, the findings from FRA’s research on involuntary placement and involuntary treatment, the right to political participation and on legal capacity will also be shared and discussed.

PARTICIPANTS

The conference aims to bring together around 120 key actors in the field of disability including: EUinstitutions and bodies; international organisations ( UN Committee on the Rights of Persons with Disabilities, OHCHR, Council of Europe); national government officials and policy makers (CRPD focal points, politicians); National Human Rights Institutions, Equality Bodies and ombudspersons; persons with disabilities and their representative organisations; service providers; civil society organisations; legal and medical professionals; and experts.

PROGRAMME

WEDNESDAY, 6 JUNE

18.00 – 20.00Early registration(Hotel Hilton Copenhagen Airport)

THURSDAY, 7 JUNE

8.30 – 9.15 Registration

9.15 – 9:45Welcome address

Conference moderator: Simon Minty, Disability expert

Morten Kjærum, Director of the EU Agency for Fundamental Rights

Karen Hækkerup, Minister for Social Affairs and Integration, Denmark

Jonas Christoffersen, Director of Danish Institute for Human Rights

Stig Langvad, Member of UN CRPD Committee and Chairperson of Disabled Person’s Organisation Denmark

9.45 – 10:00EU and the CRPD: obligations arising from ratifyingthe Convention

Aurel Ciobanu-Dordea, Director of Directorate D-Equality, DGJustice, European Commission

10.00 – 11.15The rights of persons with disabilities to participate and be included in community life

The session will examine issues related to:

olegal capacity,

othe right to vote, and

oinvoluntary placement and involuntary treatment.

Mario Oetheimer,Programme Manager, EU Agency for Fundamental Rights

Andrea Baršová,Director of Human Rights and Minority Protection Department, Office of the Government of the Czech Republic

Gábor Gombos,Member of the UN CRPD Committee

11.15 – 11.45Coffee break

11.45 – 13.00The rights of persons with disabilities to make choices about their ownlives

This session will examine issues related to:

oindependent living,

ode-institutionalisation,

ohaving a family, and

oexperiences of disability-based bullying and harassment.

Kasia Jurczak, Programme Manager, EU Agency for Fundamental Rights

Corinne Clermont, Vice-president, Nous Aussi, France

Mike Smith, Commissioner, Equality and Human Rights Commission

13.00 – 14.30Lunch

14.30 – 16.30Breakout session 1:three parallel working groups

WG 1:Right to political participation

WG 2:Involuntary placement and involuntary treatment

WG 3:De-institutionalisation

19.00 Conference dinner(Hotel Hilton Copenhagen Airport)

FRIDAY, 8 JUNE

9.00 – 11.00Breakout session 2: three parallel working groups

WG 4:Legal capacity and supported decision-making

WG 5:Having a family

WG6:Bullying and harassment

11.00 – 11.30:Coffee break

11.30 – 12.30Reporting from the working groups to the plenary

12.30 – 13.15The way forward: taking up the key issues identified at the EU level

Chairperson: Morten Kjærum, Director of the EU Agency for Fundamental Rights

Lisa Waddington, European Disability Forum Chair in European Disability Law, Maastricht University

Jan Jařab,Regional Representative for Europe of the High Commissioner for Human Rights

13.15Lunch

The conference will be held in English (simultaneous interpretation into Danish will be provided in the plenary sessions and in one of the working group rooms). Real-time transcription will be available in the plenary.

WG 1. Right to political participation

Hosts: FRA and Disabled Peoples Organisations – Denmark (DPOD)

Chairperson:Ioannis Dimitrakopoulos (Head of Equality and Citizens’ RightsDepartment, FRA)

Discussants: Jan Fiala (Legal Director, Disability Rights Center, Hungary) “The right to vote of persons with severe disabilities – recent developments in international human rights law”

David O’Brien (Chair, National Advisory Council on Down Syndrome, Ireland)“Right to Vote – My Personal Journey”

Ieva Leimane-Veldmeijere(Director, Resource Center for People with Mental Disability ZELDA, Latvia)“The right to political participation: more than just the right to vote”

Rapporteur: Pat Clarke (President, Down Syndrome International, Ireland)

The right to political participation is among the most fundamental of civil and political human rights. It is also one of the fundamental principles of the CRPD, which sets out the right to vote in Article 29. Despite this legal basis, many persons with intellectual disabilities or mental health problems in the EU continue to be deprived of their right to political participation. Some people are automatically excluded from the electoral process upon the loss of legal capacity; others may be deemed unable to vote on the basis of an individual assessment.

This workshop takes as its starting point the CRPD principle that all persons with disabilities should be guaranteed their political rights and the opportunity to enjoy them on an equal basis with others. It will discuss practical measures to ensure that all persons can enjoy their right to vote by asking participants to:

  • Identify good practices from EU Member States regarding implementing and promoting the right to political participation.
  • Discuss the measures or assistance that may be required to allow persons with intellectual disabilities or mental health problems to vote in practice.
  • Pinpoint areas for cooperation between EU institutions, Member States and civil society, including disabled persons organisations, to secure the right to vote at the national and EU level.

WG 2. Involuntary placement and involuntary treatment

Hosts:FRA and Danish organisation of (ex-) users of psychiatry (LAP)

Chairperson: Mario Oetheimer (Programme Manager,FRA)

Discussants:Mette Ellingsdalen(Chair, We shall overcome, Norway)"Forced psychiatric interventions as disability-based discrimination".

Zdenka Č. Travnik (Human Rights Ombudsman, Slovenia) “Are involuntary placement and involuntary treatment necessary – who needs them (doctors, patients, family or state?)“

Rapporteur: Karl Bach Jensen (LAP, Denmark)

EU Member States’ legislation usesa medical care approach to involuntary placement and involuntary treatment. The CRPD introduced non-discrimination principles that need to be implemented by EU Member States in this area.

The aim of this workshop is to bring together and create a space for dialogue between persons with mental health problems, medical professionals, legal practitioners, government representatives and other stakeholders. Topics to be addressed include:

  • The shift from perceiving persons with mental health problems as recipients of medical care towards treating them as rights holders.
  • Mental health laws governing the treatment of persons with mental health problems:how should the equality and non-discrimination principle be applied?
  • Procedural safeguards and appeal procedures; do they work or should mental health laws be completely abolished?
  • Access to information, rights awareness, alternatives and user-led support – identifying goodpractices across the EU.

WG 3. De-institutionalisation

Hosts:FRA and Disabled Peoples Organisations – Denmark (DPOD)

Chairperson: Stig Langvad (Chair, DPOD) and Kasia Jurczak (Programme Manager, FRA)

Discussants:Jan Jarab(Regional Representative for Europe, UN Office of the High Commissioner for Human Rights) “How can Europe ensure the enjoyment of the right to independent living?”

Maria Nyman(Director, Mental Health Europe)“Mapping exclusion”

Richard Kostenius(Board Member, Equality, Assistance and Inclusion Association (JAG), Sweden)“A life in freedom: legal representative, personal assistance and a service guarantor”

Rapporteur: John Evans (Board Member, European Network on Independent Living and European Disability Forum)

De-institutionalisation has been on the political agenda at the global, European and national levels for many years. It aims to increase the personal autonomy, self-determination and inclusion in society of persons with disabilities by enabling them to choose where to live, regardless of their impairment. Despite the widespread adoption of de-institutionalisation policies across the EU, over one million people live in institutions in the EU and neighbouring countries. This serves to reinforce the segregation of persons with disabilities and to reduce the choice and control they can exert over their daily lives.

This workshop will examine ways of speeding up de-institutionalisation processes across the EU. The central questions to be considered are:

  • What factors determine personal autonomy and self-determination, and how can they be a reality for all regardless of where one lives?
  • How can we ensure that people have a choice of where to live?
  • Is it possible to provide specialised support to persons with disabilities regardless of where they live?
  • Is it possible for institutions or community housing facilities to be in compliance with the CRPD?

WG 4. Legal capacity and supported decision making

Hosts: Danish Institute for Human Rights (DIHR)

Chairperson: Andreas Jull Sørensen(Head of Secretariat, Danish Disability Council, Denmark)

Discussants:Maria Ventegodt Liisberg (Teamleader of Disability Team, DIHR, Denmark)“Legal capacity– practical challenges for the realisation of Article 12 of the CRPD with examples from Denmark”

Hasan Bermek (Advisor to the Commissioner for Human Rights, Council of Europe)"Who gets to decide? Issue paper of theCommissioner for Human Rights on legal capacity"

Rapporteur: Susanne Nour (Director of Equal Treatment Department, DIHR, Denmark)

The right to legal capacity is a fundamental right and its enjoyment a prerequisite for enjoying other rights on an equal basis with others. Only if a person has full legal capacity may he or she make legally binding decisions about, for example, his or her private life, work, education, housing or political participation. The CRPD is based on the principles of equal treatment and self-determination which entail a paradigm shift in relation to respect for legal capacity of persons with disabilities. According to Article 12 of the CRPD, States Parties must, in order to preserve the self-determination of persons with disabilities, promote self-determination and use supported decision-making rather than substituted decision-making.

The following questions of importance to the realisation of this right in the EU will be discussed:

  • What is the purpose of guardianship and what are the risks associated with it?
  • What is the difference between supported decision-making and substituted decision-making?
  • How can authorities promote the self-determination of persons with disabilities and limit the use of substituted decision-making?
  • What safeguards should be set in place to ensure that measures relating to the exercise of legal capacity do not lead to abuse?
  • Do examples of good practice exist in the EU?

WG 5. Having a family

Hosts: Danish Institute for Human Rights (DIHR), LEV National Association

Chairperson: Signe Stensgaard Sørensen (Project Manager Equal Treatment, DIHR, Denmark)

Discussants:Hanna Björg Sigurjónsdóttir(Senior Lecturer, University of Iceland, Iceland)

Mikaela Starke(Senior Lecturer, University of Gothenburg, Sweden)

Join presentation on "Parents with intellectual disability and their children:short reflection about research and knowledge about parent- and childhood?"

Rapporteur: Anna Lawson(Senior Lecturer, University of Leeds, United Kingdom)

Article 23 of the CRPD requires that States Parties take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others. In practice, the realisation of this right means different things to different people. Persons with disabilities may face difficulties in living together as a family, they may not be sufficiently supported to act as a parent or they may have their child forcibly removed.

This workshop will focus on the challenges faced by people with intellectual disabilities. The central questions to be considered are:

  • How can it be made possible for persons with disabilities to live together with others as a family?
  • What is parenthood like for persons with disabilities?
  • What can be done to support persons with disabilitieswho are or want to be parents?
  • What is in the child’s best interest?

WG 6. Bullying and harassment

Hosts: FRA

Chairperson: Monica Gutierrez (Research Assistant, FRA)

Discussants:Hilary Brown(Senior Consultant, Canterbury Christ Church University, United Kingdom)“Bullying and harassment of persons with disabilities:The three R's: recognising, reporting and responding”

Camille Latimier (Inclusion Europe) “Protection against violence and abuse - a European perspective on children with intellectual disabilities”

Rapporteur: Oliver Lewis (Executive Director, Mental Disability Advocacy Center, Hungary)

Bullying, harassment and violence against persons with disabilities often remain hidden. More awareness-raising is needed to address what is both a violation of their fundamental rights and a major obstacle to promoting independent living for persons with disabilities. Harassment and violence affect children and adults with intellectual or with physical disabilities or with mental health problems. Physical, psychological or sexual violence can happen within a family context, in institutions, during the provision of services or when taking part in daily activities, such as using a bus or walking in a park.

The objective of this workshop is to discuss:

  • Challenges in identifying and supporting victims;
  • Ways to prevent harassment and violence from happening;
  • Tools to address cases where violence is based on prejudice or hostility;
  • Good practices ensuring victims have appropriate access to the justice system.

The discussion will inform the development of the new FRA project on children with disabilities, which will look into their experiences of discrimination, inclusion and hate speech.

Conference on AUTONOMY AND INCLUSION

The rights of persons with intellectual disabilities and persons with mental health problems

Copenhagen, 7-8 June 2012