1. Legal capacity of persons with disabilities in the Balkan region Human Rights of Persons with Diabilities in the Balkans and Turkey, Istanbul, 9th - 11th October 2013 Ulrich Hellmann, Inclusion Europe www.inclusion-europe.org

2. Inclusion Europe The European Association of Persons with Intellectual disabilities and their Families Founded 1989 Regional Member of Inclusion International Members in all 27 EU countries 8 Members in accession and non-EU countries 13 Member organisations of self-advocates www.inclusion-europe.org

3. Making decisions is essential for everybody's life: Health Care Personal Life – where and how to live, work, be supported; relationships, family Finances/Property

4. Making decisions - a matter of Legal Capacity - The Issue of Article 12 CRPD: Adults who have an intellectual disability whereever they live in the world continue to be isolated, discriminated and often excluded from normal life of the society. They continue to be denied the right to control their own lives and make decisions about how they want to live Art.12 is essential to create and protect equal opportunities, independence, autonomy and inclusion into society

5. Making decisions - a matter of Legal Capacity - The Issue of Article 12 CRPD: States Parties (Art. 12 (1)) reaffirm the right of persons with disabilities to be recognized everywhere as equal before the law. Art. 12 (2) states that States Parties shall recognize that persons with disability enjoy legal capacity on an equal basis with others in all aspects of life.

6. The meaning of Art. 12 Article 12(3) states that:  States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. = support to make own decisions

7. The meaning of Art. 12 Legal Capacity means:  capacity to have rights AND capacity to ACT, that is to say making legally binding arrangements with others: personal care, health care, property, finances, choosing a place to live.....

8. Article 12 - Safeguards Article 12 (4) States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse: –respect the rights, will and preferences of the person –free of conflict of interest and undue influence –proportional and tailored to the person's circumstances –subject to regular review by an authority –apply for the shortest time possible

9. Article 12 – consequences Article 12 obliges States to provide people with disabilities the supports they need to exercise their legal capacity. "Substitute-decision-making" is not mentioned in Art. 12 Laws on incapacitation and plenary guardianship in many countries are clearly in breech with Art. 12

10. The situation with regard to legal capacity in Europe Variety of situations – from very progressive models to old-fashioned laws. A general trend of reforms to implement „modern guardianship“ laws, discussions in many countries. Attempts to develop models of supported- decision making – impulse from Central and Eastern European Countries, more recently also Ireland

11. Reforms of old Guardianship Laws Germany: Betreuungsgesetz (1992), no more incapacitation procedure, legal support and representation as far as necessary, France: Guardianship Law (Code Civil) reform of 2007, Italy: New measure "amministratore di sostegno" (support person) without incapacitation, law reform of 2004 Czech Republic: New Civil Code will enter into force in January 2014, Guardian without restriction of legal capacity, provisions for support

12. Traditional old-fashioned laws.....still prevail in many countries throughout Europe Incapacitation and plenary guardianship result in a complete deprivation of rights – no right to make any legally valid decisions, to vote, to marry, and (in some cases) no right to work These legal measures are often used to facilitate involuntary, long-term residential care Conflicts of interests (Institutional staff = guardians) No reviews No access to legal remedies (appeals)

13. Balkan Region and Turkey - The PERSON-Project Project under coordination of the Centre for Disability Law and Policy, University Galway (Ireland) www.eu- person.comwww.eu- person.com Strategic Plan 2012-2014 to promote reforms in legal capacity legislation on the basis of 10 "guiding principles"

14. Person Project Partners Mental Disability Rights Initiative of Serbia (MDRI-S) SUMERO Bosnia and Herzegovina The SHINE Croatia Institute of Sustainability and Development of Youth (ISDY), Kosovo The Initiative for Human Rights in Mental Health (RUSIHAK), Turkey

15. Bosnia and Herzegovina Numbers of people deprivier of their legal capacity increased by up to 100% betreten 2005 and 2010 in the Canton of Sarajevo A 2001 Law provides for the deprivation of the legal capacity of all persons who are placed in social protection institutions in order to obtain consent of guardians to their institutionalization The 2001 Law has led to an increase of placements in social protection institutions There is awareness that legislation has to be changed in order to compiler with Art. 12 CRPD; the decentralized political system creates barriers for overall reforms in legislation and practice. www.sumero.ba www.sumero.ba Source: www.person-eu.com, Strategic Plan 2012-2014www.person-eu.com

16. Croatia Outdated legislation on legal capacity and guardianship, 18.382 adults under guardianship in Croatia by December 2011, out of which 4842 had eben placed in long-term residential care institutions and 373 in hospitals, The SHINE is strongly lobbying for legislative reform to comply with Art. 12 CRPD Successful initiative to changed the Registry of Voters Act to allow people deprivier of legal capacity to be recognized as voters. Source: www.person-eu.com; Strategic Plan 2012-2014www.person-eu.com

17. Kosovo No official data about guardianships available. Incapacitation is pre-condition for admittance in a social care facility 249 adults currently live in 11 facilities run by the Ministry of Labour and Social Welfare People with chronic psycho-social disabilities are provided for admittance in 9 long-term facilities, totalling to 140 beds, operated by the Ministry of Health. Legal status is often unclear. A National Action Plan 2009-2011 mentions the goal of de-institutionalization; Government is drafting Kosovo National Disability Strategy 2013-2022 Source: www.person-eu.com; Strategic Planwww.person-eu.com

18. Serbia Outdated legislation on legal capacity and guardianship, scattered throughout many laws 11.025 adults under guardianship by December 2011, an increase by 33,9% compared to 2010 Most residents of institutions are under guardianship and have no right to decide about their everyday lives Proposed Law reforms (Nov. 2012) regarded as insufficient with international obligations Source: www.person-eu.com; www.mdri-s.orgwww.person-eu.com

19. Turkey Widespread practise in Turkey to deprive people with psychosocial or intellectual disabilities of their legal capacity and put them. under guardianship The Ministry of Family and Social Policies is drafting new disability legislation which should be in accordance with the CRPD, hopefully covering Art.12 Source: www.person-eu.com; Strategic Plan 2012- 2014www.person-eu.com www.rusihak.org

20. Supported-decision-making is the requirement of Art. 12 CRPD The UN Committee on the Rights of Persons with Disabilities has repeatedly stated that States Parties must develop laws and policies to replace regimes of substitute decision-making by supported decision-making

21. Support in decision-making can take many forms For some people accessible and easy to understand information and advice many be sufficient Others may require formal supports by social services or trusted persons; such offers should be in place and granted by law Other support arrangements may include legally recognized advocacy supports (Self-advocacy, Peer advocacy)

22. Forms of support to exercise legal capacity Some people may have the opportunity to plan in advance and make legal arrangements for the personal future (advance directives, enduring Power of Attorney) and choose this kind of suport Most States Parties lack legal provisions in favour of formal support arrangements such as the representation agreement - New models and solutions should be developed and promoted Support-mechanisms for people whose wishes and preferences are unknown and undetectible must follow clear criteria, including safeguards

23. Models/Good practices The Representation Agreement Act of British Columbia (Canada) entitles persons with disabilities to be represented by one or more support person(s); The ability to understand and enter into a legally binding contract is no pre-condition for a RA Every person has wishes and preferences - the way somebody communicates is not a factor in determining the person's level of decision-making ability A relationship of trust with one or more persons who are willing and able to understand and support the person is the core element of a representation agreement Safeguard: Appointment of Monitors

24. Activities of Inclusion Europe to promote proper implementation of the CRPD Action Plan (Tool Kit) to promote ratification and implementation of the CRPD in all Member States, including accession States Position Paper "Key elements for a system of supported decision-making" Round-Table-Meeting on Legal Capacity in the EU-Parliament in November 2011 Projects and Training seminars in many european countries

25. Global Campaign"The Right to Decide" Inclusion International's objectives to advance Art.12: Raise awareness about the impact of the denial of the right to make decisions. Identify models of support for families and individuals that enable people to control their own lives. Explore models of Supported Decision Making. Provide tools to families and individuals to understand decision making and how supported decision making works.

26. Thank you for listening! www.inclusion-international.org  Get involved - Share stories and examples: righttodecide@inclusion-international.org www.inclusion-europe.org