Biennial Report, 2011-12

mental disability advocacy centerbiennial report, 2011-12?i am not an object. i am a person. i need my freedom.? ? rusi stanevphotosrusi stanev and his campaign for justice is why mdac exists. bundled away in an ambulance in 2002 on the order of a guardian he was placed in an inaccessible institution for ?people with mental disorders? where he was forced to live in the most appalling conditions for over eight years. mdac and the bulgarian helsinki committee helped mr stanev to win his case at the european court of human rights.front cover: rusi stanev ? yana buhrer tavanierback cover: rusi outside the european court of human rights, 2009, with former mdac legal officer victoria lee and mdac legal monitor aneta genovasupported by mdac, read how mr stanev?s victory at the european court of human rights has changed the legal landscape across europe for people with disabilities on pages 6?7 .all photos throughout this report are ? mental disability advocacy center unless otherwise stated.hercegpr?m?s utca 11h-1051 budapesthungaryt: +36 1 413 2730f +36 1 413 2739e: mdac@mdac.infow: www.mdac.infobiennial report, 2011-12 | contentscontentsmessage from our honorary president ………………………………………………………………………..1message from our chair of the board ……………………………………………………………………….2message from our executive director …………………………………………………………………………4strategic litigation ………………………………………………………………………………………………….5successes: european court of human rights cases ……………………………………………………6pending: european court of human rights cases …………………………………………………….11successes: domestic cases ………………………………………………………………………………..13pending: domestic cases ………………………………………………………………………………….14advocacy …………………………………………………………………………………………………………..16summer school ……………………………………………………………………………………………….17research and advocacy in africa …………………………………………………………………………18save the vote! ………………………………………………………………………………………………..20community living ……………………………………………………………………………………………22legal capacity ……………………………………………………………………………………………….24preventing torture …………………………………………………………………………………………….26finances ……………………………………………………………………………………………………………28profit and loss statement ……………………………………………………………………………………….30mdac people, 2011-12 ………………………………………………………………………………………..324biennial report, 2011-12 | message from our honorary president1message from our honorary presidenti spent six years as commissioner for human rights of the council of europe, and during that time i visited all 47 countries of the council of europe. in several countries i heard, and saw first-hand, how people with disabilities are left to live on the edges of our societies, excluded from our communities. as commissioner i focused on the rights of people who find themselves in situations of vulnerability. mdac is a key organisation which understands the issues, and provokes governments to remind them of their human rights commitments. now with so many governments cutting social assistance due to austerity measures, the work of non-governmental organisations such as mdac is even more important. that?s why on stepping down as commissioner in march 2012 i was delighted to accept mdac?s invitation to join the organisation as its honorary president. i urge you to read this biennial report, and to contribute to the fight against exclusion and prejudice that people with intellectual disabilities and people with psycho-social disabilities face every day. you can make a financial contribution via our website. thomas hammarberg @tomhammarberg prior to his role as commissioner for human rights which he held from 2006 to march 2012, thomas hammarberg has held various senior human rights appointments including secretary general of the stockholm-based olof palme international center (2002-2005), ambassador of the swedish government on humanitarian affairs (1994-2002), secretary general of save the children sweden (1986-1992). he was secretary general of amnesty international (1980-1986), and received the nobel peace prize on behalf of the organisation in 1977.thomas hammarberghonorary presidentmdac provokes governments to remind them of their human rights commitmentsbiennial report, 2011-12 | message from our chair of the board 2message from our chair of the board mdac has benefited enormously from the insights, labours and intellect of professor peter bartlett, who stepped down as chair of the board in 2011. peter?s own research in the field of mental health law has been central to that field?s international intellectual reinvigoration in the past two decades. in taking over the chair from peter, i have reflected on what is most characteristic about mdac. i have always thought of mdac as a provocation ? as an organisation whose energy, dynamism and tough rigour allows it not only to agitate and take action itself, but to press others (whether judges, governments or legislators) to change and take action. while the signature programme of mdac is strategic litigation, in the past few years our capabilities in advocacy, monitoring and capacity-building have grown apace. the creativity that mdac staff and volunteers have shown in the last two years in working across different media, at various scales of action, and with new as well as long-standing partners to work towards our various human rights goals has been inspiring. as showcased on pages 20?21 of this annual report, our ?save the vote!? campaign is a good example. this creativity is indicative, too, of the great strengths of a relatively small ngo. when operating at full stretch, mdac has the flexibility, ingenuity and incisiveness to take rapid and effective advantage of the political and legal configurations in which it suddenly finds itself. and it is undoubtedly the case that mdac grasps with alacrity the precious opportunities afforded by particular moments that sometimes open without warning within the international human rights and disability field.it is my hope that in the next few years, we will be able to push our flexibility and ingenuity even further. this will allow us to make best use of the possibilities and challenges that are opened by virtue of the fact that an ever-growing number of countries have ratified the un convention on the rights of persons with disabilities (crpd). the convention ushers in many complex legal, policy and conceptual challenges and conundrums. it also has the potential to encourage new synergies to emerge across the various communities and social movements that are working to counter discrimination on grounds of disability and mental ill health ? whether they are mental health professionals, the disability rights movement, or within wider human rights communities. mdac draws together ? both within its staff and across its board ? diverse expertise and experiences of activism that relate to these various communities and to our core constituencies, children and adults with intellectual and psycho-social (mental health) disabilities. we are ideally placed to foment new alliances as well as to maximise the gains that are to be had from ensuring that these overlapping, but often distinct, communities of interest work more closely together. felicity callardchair of the boardbiennial report, 2011-12 | message from our chair of the board 3that we pride ourselves on our dynamism is of particular importance. for this moment, in which enormous gains have been won through the adoption of the crpd, is also one of great danger. this is not least because of the many difficult political, economic and cultural forces that are pushing against the full implementation of the crpd. after all, we are now entering the sixth year of the global economic crisis, and history makes it ferociously clear that such crises tend not to be kind to people with disabilities. in my own jurisdiction of england and wales, for example, the number of recorded incidents of disability hate crime has grown by 60% between 2009 and 2011. such disturbing statistics, and there are many more that we could quote, make it all the more crucial that mdac ? one of the few only international organisations with the specific expertise to address the range of abuses faced by people with intellectual and psycho-social disabilities ? is able creatively and effectively to work towards advancing its human rights goals. the bold actions of our team are dependent, of course, upon adequate organisational finances ? not just now, but into the future. to this end, we have embarked on a fundraising campaign ?making a world of difference?. this will ensure that mdac has the resources to intervene and make tangible differences to people?s lives in the future. our provocations ? in both word and deed ? are needed in the field of human rights and disability now more than ever. if you would like to support us with this campaign, i would be really pleased to hear from you.felicity callard @felicitycallard felicity callard phd, is senior lecturer in social science for medical humanities, durham university and a visiting researcher in the service user research enterprise, king?s college london (institute of psychiatry). her co-authored book mental illness, discrimination and the law: fighting for social justice was published by wiley-blackwell in early 2013. it is my hope that in the next few years, we will be able to push our flexibility and ingenuity even further.biennial report, 2011-12 | message from our executive director 4message from our executive director at mdac we don?t deal with pleasant issues. in fact we seek to help some of the most marginalised people in our societies, vulnerable to financial exploitation, sexual abuse and abandoned by their families, the state, and society at large. austerity budgets are forcing cuts on national human rights institutions who are supposed to hold governments to account. many national ngos are now compromised in their advocacy because they receive substantial funding from governments. the demand on independent ngos like mdac to fearlessly advocate for human rights is greater now than it has been since the organisation was established in 2002. mdac focuses on achieving sustainable law and policy reforms which benefit many people. we do this by referring to human rights standards which governments have agreed to comply with. human rights mechanisms, like the european court of human rights, have been under-used and unresponsive to the needs of people who are labelled with disabilities. in collaboration with ngos in many countries we have tried to change this by taking test cases to courts, initiating law reform, and empowering people with disabilities to be their own agents of change. people with disabilities are treated as if they don?t exist, forgotten politically, socially and economically. however, they do exist and we make them clearly and strongly visible to the rest of the world. we work with the international community because changes trickle down to country level and can result in long-lasting change for people?s lives. in this biennial report we outline how we have contributed to advancing human rights. i would like to thank our small cadre of staff and volunteers, our facebook fans and our twitter followers, and our growing number of supporters. looking to the future, our biggest challenge is to follow through on the cases we have won and make sure that rights become reality. we cannot do this alone, so please contact me to discuss how you can help.oliver lewis @olewis75oliver lewisexecutive director people with disabilities are treated as if they don?t exist. we make them clearly and strongly visible to the world.biennial report, 2011-12 | strategic litigation5strategic ligitationwe select individual cases that have the potential to force a government to implement or change a law so that many more people benefit. strategic litigation is a slow-burn activity which has to be conducted methodically and with persistence. mdac has pride in our ability not only to protect and promote people?s rights, but how we have contributed to ? and in several fields led ? the transformation of the very framework in which the international legal community approaches questions of human rights in relation to mental health and intellectual disability.in 2011-12 many of the cases which we filed more than five years ago came to fruition. among the successes were stanev v. bulgaria (social ?care? can be unlawful detention), ples? v. hungary (the need for mental health treatment cannot in itself justify detention), bures v. czech republic (strapping someone to a bed can amount to unlawful and inhuman treatment) and zh v. hungary (failing to accommodate a prisoner?s multiple disabilities constitutes torture, inhuman and degrading treatment). the challenge that we now face at mdac, as the law develops across europe, is ensuring that judgments actually have result in concrete changes in the lives of our clients and for people with disabilities much more broadly. each individual case we work with highlights institutional structures which require challenging to advance human rights compliance by states. as the law continues to develop, we will move our advocacy from the courts back to the countries concerned.strategic litigationlycette nelsonlitigation director it?s mdac?s job to use the law as a tool to help people regain their rights.biennial report, 2011-12 | strategic litigation6strategic ligitationsuccesses: european court of human rights casesrusi stanev v. bulgariain january 2012 the grand chamber of the european court of human rights delivered a landmark judgment in one of our cases, which potentially transforms the way in which social care is delivered for people with disabilities across europe. mdac and the bulgarian helsinki committee represented mr stanev in his attempts to bring domestic proceedings and at the european court. the london-based ngo interights intervened as a third party in the case. in 2002 on december 10 (ironically, international human rights day) an ambulance picked up 46-year old rusi stanev from his home where he lived alone. he was bundled inside and driven 400km to an institution for ?adults with mental disorders.? his placement in the institution was arranged through an agreement by a municipal official acting as mr stanev?s guardian (the guardian had never met mr stanev and signed off on the institutional placement a mere six days after becoming his guardian) and the institution?s director. it was arranged on the basis that mr stanev had a diagnosis of schizophrenia and that his relatives did not want to care for him. mr stanev knew nothing about this agreement and did not want to leave his home. no one told him why he was being taken to the institution or how long he would stay there. two years earlier, a regional court had restricted his legal capacity: he was not informed of the purpose of the proceedings and was not represented by a lawyer or informed of his right to legal aid. once under guardianship, mr stanev was prohibited by law from making any decisions about his own life. he unsuccessfully appealed the court decision a year later. in 2005, the director of the institution was appointed his guardian.the road to pastra? yana buhrer tavanierthe so-called ?toilets?, also located in the yards, represented decrepit shelters with holes dug in the ground. the state of these facilities was execrable; further, walking to them on the frozen, slippery ground was potentially dangerous, especially at night. residents visibly used the surrounding outside area as a toilet.findings of the european committee for the prevention of torture, describing pastra social care institutionbiennial report, 2011-12 | strategic litigation7strategic ligitationawarding mr stanev compensation of ?15,000, the european court of human rights held that he had been deprived of his liberty under article 5 of the european convention on human rights (echr) because he was under constant supervision in the institution and was not free to leave without permission. the court found a violation of article 5(1) of the echr because his detention was not based on his mental health status, which remained largely irrelevant to his placement, and that there was no need to detain him. the court also found a violation of article 5(4) of the echr which sets out the right to a court review of detention, because the bulgarian law allowed him no opportunity to have the lawfulness of his detention assessed by an independent judicial body. as a person whose legal capacity had been stripped, he had no legal standing to litigate. the court also found a violation of article 5(5) of the echr, which sets out a right to domestic compensation for a violation of article 5. importantly, the court found that the conditions of the detention were ?degrading,? in violation of article 3 of the echr. at the end of 2012, rusi stanev was living in a protected home, which still placed substantial restrictions on him. the strasbourg court found that it was a violation of his human rights for mr stanev not to have the power under bulgarian law to initiate a court proceeding to regain his legal capacity. despite this, the bulgarian government had not changed the law, and the bulgarian prosecutor, who has authority to initiate a proceeding for mr stanev to regain his legal capacity, had refused to do so. mdac continued to advocate for mr stanev to receive the services he needs to live in the community, and our lawyer continues to represent him. an overcoat is placed on the bed instead of a mattress in pastra? amnesty international 2002thanks to this judgment, european countries must end policies and practices that unnecessarily restrict the liberty of thousands of people with disabilities in the provision of social care.lycette nelson, litigation directorbiennial report, 2011-12 | strategic litigation8strategic ligitationmilan s?kora v. the czech republic? not a ?voluntary? patient in the year 2000 the local government had mr s?kora, at that time 51 years old, placed under guardianship without even telling him. he was ?represented? by an employee of the court, who never met him or took instructions from him. five years later, after an argument with his girlfriend, he was taken to a psychiatric hospital. he didn?t show any signs of mental illness, but was forcibly injected with psychiatric drugs which damaged his eyesight for a year. on day five out of his twenty days in hospital, mr s?kora contacted lawyers working for the czech ngo the league of human rights and mdac. the lawyer was not allowed to see him because his guardian did not give permission. in 2007 the czech constitutional court refused to hear the case. in november 2012 the european court of human rights awarded mr s?kora ?20,000 compensation. the court found that it is inappropriate to classify someone as a ?voluntary? patient in a psychiatric hospital if that person does not want to be there even if their guardian does. denying a detained person the opportunity to challenge the detention before a court is unfair, and a law which allows person a (the guardian) to authorise the detention of person b (the person under guardianship) without any independent oversight is arbitrary and unacceptable. the court was critical of the guardianship proceedings, finding that the failure of the applicant?s legal representative to take part in the proceedings and the failure of the judge to have personal contact with the applicant were ?serious deficiencies? in the machinery of justice. zh v. hungary? discrimination in prison mr h is a 25 year-old man who is deaf, does not use verbal communication, cannot read or write, and has an intellectual disability. his only means of communication is a specific sign language and his mother is the only person who understands him. in 2011 he was arrested for theft and was interrogated in the absence of his mother. he was held in pre-trial detention for three months where his mother was only allowed to visit him every two weeks, so he was effectively denied the possibility of communicating with anyone. mdac?s role in this case was to submit a third party intervention to the european court of human rights. in november 2012 the court issued a judgment, saying that states need to prove that they provide ?reasonable accommodations? to vulnerable people in prisons. this includes the adjustments which need to be made to a prison in a particular case to enable that person to be treated equally. the court also said that a state?s failure to prove that it has provided reasonable accommodation to a person with a disability in detention in milan s?kora?s case illustrates the very worst excesses of medicine and of law. psychiatry still generates story-lines like a franz kafka novel. the government needs to prevent mental health systems from being used as a social dustbin. oliver lewis, executive directorbiennial report, 2011-12 | strategic litigation9strategic ligitationitself amounts to inhuman and degrading treatment, which is absolutely prohibited under international law. in this case the court found a violation of article 3 which prohibits torture, inhuman and degrading treatment, and a violation of article 5(2) of the european convention on human rights (echr), which sets out the right to be informed, in a language which the person understands, of the reasons why someone has been detained and any criminal charges. the court awarded ?16,000 damages. luk? bure? v. czech republic? cellist restrained by leather straps luk? bure? was 22 years old in 2007 when he accidently overdosed on medication prescribed by a psychiatrist. he was brought by the police to a sobering-up centre, where he was immediately strapped with leather restraint belts to a bed, although he presented no danger to anyone. he spent at least three hours during the night in restraints, resulting in injuries which impaired movement of his elbow as a result of compression of the nerves and blood vessels, which would have a long-term but not permanent effect: devastating to mr bure? as he is a cello player. once he was out of the hospital, mr bure? brought criminal charges for the ill-treatment he had suffered but the public prosecutor decided not to prosecute and no one was held accountable. mdac and the ngo league of human rights represented mr bure? in both domestic proceedings and at the european court of human rights. in october 2012 the court awarded mr bure? ?20,000 for the violations of his rights and as compensation for the psychological and physical pain, he had experienced. the court said that the strapping and the state?s failure to prevent this from happening violated article 3 of the echr which sets out the right to freedom from torture, inhuman and degrading treatment. in the sobering-up centre, the court found, ?[s]trapping was applied as a matter of routine.?luk? bure?biennial report, 2011-12 | strategic litigation10strategic ligitationa
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zp_ehmwih[fh[i[dj[zxothe helsinki foundation for human rights in warsaw, and mdac submitted a third party intervention to the european court of human rights.in a similar way to the stanev case (see pages 6?7), in october 2012 the european 9ekhjekcwdh_]^jiekdzj^wjcha
zp_ehwas not free to leave the institution without the management?s permission which could only be sought by his official guardian, which poland claimed was sufficient for the detention to be regarded was voluntary. reaffirming its views established in the 2010 judgment of shtukaturov v. russia (another mdac ywi[j^[9ekhjiw_zj^wjcha
zp_eh?iz[j[dj_edmwi_dlebkdjwho”dej`kij__[z”wdzj^wj^[i^ekbz^wl[x[[dgiven an opportunity to challenge it through the judiciary. the court awarded the applicant ?10,000 damages.ples? v. hungary? detention in psychiatric institution for no reason in 2007 a hungarian court ordered mr ples? to be detained in a psychiatric hospital without having any legal authority to do so, because mr ples? had refused to undergo a ?voluntary? psychiatric evaluation. as a result he spent nearly one month in a hospital under a compulsory inpatient treatment order, including two weeks in a locked ward. in finding a violation of article 5(1) of the echr which sets out the right to liberty, the european court of human rights commented on the arbitrariness of the decision ordering mr ples?s involuntary hospitalisation. in doing so, the court articulated strong principles upholding the rights of persons with psycho-social (mental health) disabilities to make choices about their own treatment and of the need for less restrictive alternatives to detention. awarding mr ples? ?10,000 the court upheld the value of autonomy and self-determination, including the right to refuse treatment, for people with psycho-social disabilities. in its judgment the court stated, ?it is incumbent on the authorities to strike a fair balance between the competing interests emanating, on the one hand, from society?s responsibility to secure the best possible health care for those with diminished faculties (for example, because of lack of insight into their condition) and, on the other hand, from the individual?s inalienable right to self-determination (including the right to refusal of hospitalisation or medical treatment, that is, his or her ?right to be ill?).? the european court of human rights also found that the hungarian courts had perceived the applicant?s refusal to undergo hospitalisation as proof of his lack of insight, rather than as ?the exercise of his right to self-determination.? mdac initiated this case in 2008 and it was later litigated by the disability rights centre, an ngo in hungary.the european court has again sent a clear message to governments: stop detaining people in segregated institutions!luke clemens, professor of law, cardiff university, ukbiennial report, 2011-12 | strategic litigation11strategic ligitationcenter for legal resources on behalf of valentin c?mpeanu v. romania- left to die in freezing conditions mr c?mpeanu grew up in state care. he had an intellectual disability and was hiv-positive. when he turned 18 and could no longer stay in a children?s institution, he was moved to a large institution for adults. there he was denied adequate healthcare and died in sub-zero temperatures. the center for legal resources, a romanian ngo, lodged an application to the european court of human rights on his behalf because he did not have family or a guardian to vindicate his rights. mdac?s amicus curiae brief laid out the international law regarding abuse in institutions, and access to justice. laschaevsky v. russia- deprived of liberty through operation of law mr laschaevsky is a 38-year-old russian man. he was deprived of his legal capacity in 1997. in 2009, the person who had been his guardian asked to be removed as his guardian, but no one was appointed to replace her. lacking a guardian, mr laschaevsky was considered under russian law to be ?helpless?, that is, unable to care for himself. he was involuntarily admitted to a psychiatric hospital. by operation of law and without any involvement by a court, the psychiatric hospital became his guardian. mdac represented him in domestic proceedings to challenge his deprivation of liberty on purely social grounds. when these were unsuccessful, mdac lodged an application at the european court of human rights on his behalf in 2011 claiming violations of his right to liberty under article 5 and his right to a private and family life under article 8. delova v. russia? plenary guardianship removed all decision-making powers ms delova, a 51-year-old russian woman, has an intellectual disability. despite expert reports that she was able to manage her small income, she was placed under plenary guardianship, with all of her legal rights restricted, because russian law did not allow any alternative to plenary guardianship. in addition to filing a case at the russian constitutional court, ms delova filed an application at the european court of human rights asking for finding that her rights to private and family life were violated by full deprivation of her legal capacity. pending: european court of human rights cases european court of human rightsbiennial report, 2011-12 | strategic litigation12strategic ligitationlobastova v. russia- director of institution appointed guardian instead of mother ms lobastova is a 23-year-old woman with an intellectual disability. she had lived with her mother (who was also her guardian) all her life. in 2010, her mother became unable to take care of her. given the failure of the russian authorities to provide adequate services to support her to live in her own home, she was placed in a social care institution. under russian law, it is almost automatic for directors of social care institutions to be appointed guardians for their residents and this is what happened to ms lobastova. she, however, wanted her mother to continue to be her guardian, someone whom she knows and trusts and who can communicate with her. the case argues that the practice of appointing directors of social care institutions as guardians is an interference with the right to private and family life under article 8 of the european convention on human rights as it deprives people with disabilities the authority to choose their own guardian.?[hl[dawl$9p[y^h[fkxb_y? institutionalised simply on the basis of his disability similarly to the facts in stanev v. bulgariai[[fw][,?-”ch?[hl[dawmwifbwy[zxowfkxb_y]kwhz_wdin a social care institution despite having his own apartment where he was living without any problem. mdac is representing him at the strasbourg court where he is arguing unlawful detention, violations of his right to family and private life, and discrimination on the basis of his disability. mikhaylenko v. ukraine? no access to court to challenge guardianship ms mikhaylenko is a 42-year old woman who has various disabilities, including psycho-social disabilities. she was deprived of her legal capacity and one of her sisters became her guardian, but she is independent and able to manage her own affairs. she has no means to apply to for review of her placement under guardianship as ukrainian law prohibits this. she claims before the european court of human rights that her right to a fair trial has been violated by her not having access to a court to challenge her placement under guardianship and this constitutes discrimination on the basis of disability.biennial report, 2011-12 | strategic litigation13strategic ligitationsuccesses: domestic cases in 2011-12 mdac helped in twenty cases before domestic courts and administrative authorities. in the domestic cases highlighted below, we refer to the clients by their initials rather than by their full names to protect their confidentiality. full names are given in the cases before the european court of human rights because their names are public once cases have been filed unless an applicant has specifically requested that he or she remain anonymous.in the russian constitutional court- lack of alternatives to plenary guardianship unconstitutional in june 2012 the russian constitutional court quashed as unconstitutional the lack of alternatives to plenary guardianship. this case, supported by mdac, challenges the complete restriction of rights of the estimated 300,000 people who are currently under guardianship in russia, all stripped of their personhood and of their legal rights. the constitutional court ordered the russian parliament to enact a new law which better respects people?s decision-making capacity.in the slovak constitutional court-mental health condition alone insufficient to justify guardianship in november 2012 the constitutional court found in an mdac-initiated case that guardianship cannot be imposed on someone simply on the basis of evidence of the person?s mental health condition. courts need to take into account other factors such as the person?s family and social situation. the court noted that the understanding of disability has evolved in law and that, while in the past decisions about deprivation of legal capacity were made with a view to protecting third parties and for the public interest, courts today must primarily consider the rights of the person concerned.in the szentendre town court (hungary)? support network recognised by court ms em is a woman with a psycho-social disability. in 2009, after she had made complaints against the social care institution where she lives, the local government initiated her placement under guardianship. she does not want to be under guardianship because she has a support network and is able to manage her own affairs. after several hearings in the case in early 2012, the judge ruled in her favour finding that ms em?s ability to use the support she had precluded the necessity of any restriction on her legal capacity.biennial report, 2011-12 | strategic litigation14strategic ligitationpending: domestic cases mdac was assisting clients in the following cases which were pending at the end of 2012. ms av (czech republic) a district court deprived ms av, a 53-year-old woman with a psycho-social disability, from exercising her parental rights and denied her the opportunity of visiting her daughter. she is challenging the ruling because the district court did not allow her to introduce any evidence in support of her parenting abilities. mr kd (czech republic) the applicant is a 42-year-old man who suffers from a rare disease called wilson?s disease, which causes both physical disabilities and, in some cases, the development of mental health problems. mr kd was placed in a psychiatric hospital for an indefinite period after being found not guilty by reason of mental disability for sexual offenses. the hospital did not accommodate his disabilities, causing him physical pain, humiliation and a deterioration of his mental state. ep (czech republic) the applicant is a 12 year old boy with autism who had been attending a mainstream school with an assistant provided by the school. the school informed ep?s parents that it could no longer provide the assistant and that the parents would have to pay for the assistant themselves. the parents cannot afford this. ms ks (czech republic) the applicant is a 70-year-old woman who was detained in a psychiatric hospital and forcibly treated with anti-psychotic medication. mdac made a complaint to the czech ombudsperson and submitted a claim to the constitutional court challenging the law that allows for forced treatment without any safeguards for people involuntarily detained as forensic patients. ms es (czech republic) the applicant is a roma woman who has an intellectual disability. her children were removed from her because of her disability, and proceedings to terminate her parental rights were commenced. two of her children, who also have disabilities, were placed in institutions. she is claiming she was the victim of disability-based discrimination. mr sv (hungary) the applicant was deprived of his legal capacity in 2004 and this should have been reviewed after five years. his placement under guardianship has never been reviewed. as a member of the registry of the european court of human rights i worked on some disability cases. the realisation of how difficult it is for people with disabilities to be granted access to justice, especially if they are under guardianship, struck me then, and strikes still strikes me now. one strategic case can change the lives of many.7b[aiwdzhw?lwdael_?#jwcwcel_?”senior legal officerbiennial report, 2011-12 | strategic litigation15strategic ligitation7b[aiwdzhw?lwdael_?#jwcwcel_?senior legal officermr vk (russia) the applicant is a man with an intellectual disability. he and his partner lived in an institution and had a daughter, who was automatically placed in an orphanage at birth. the applicant left the institution, set up a home independently and requested to have his daughter live with him, the request being supported by the social services. the orphanage, as the girl?s custodian, refused to hand her over to her father. a few days before the girl?s fifth birthday the russian courts ordered that mr vk?s daughter should be handed back to him. the case is pending before the european court of human rights, where mr vk claims recognition of violation of his right to a family life, along with that of his daughter.ms sl (russia) the applicant, a 23-year-old woman with an intellectual disability, was placed under the guardianship of her mother. when she was 20 her mother placed her in a social care institution. although she wanted her mother to be her guardian, russian law mandates that the institution is the guardian for people placed in institutions and under guardianship, creating obvious conflicts of interest.mr ev (slovakia) the applicant had been under guardianship for six years before being placed in a social care institution by his stepfather/guardian in 2011. he wants to restore his legal capacity and to challenge his detention in the institution. ms bb (slovakia) the applicant is a 59-year old woman with disabilities who was denied support services by the local government to enable her to continue to live at home. her case argues that the slovak government?s denial of support violates her right to live in the community, as set out in the un convention on the rights of persons with disabilities. ms ea (portugal) the applicant is a 14-year old irish girl who is a strong swimmer. she also has down syndrome. she and her parents were on holiday in portugal and wanted to pay money to a company which offered the opportunity for tourists to swim with dolphins. the company refused to allow her because of her disability. the case, before the portuguese equality authority, challenges this direct discrimination. biennial report, 2011-12 | advocacyadvocacy16mdac?s uses international law to remind governments that they should take certain actions. working directly with governments, mdac also encourages international human rights mechanisms to make progressive recommendations to governments. in particular we targeted the un committee on the rights of persons with disabilities, the un human rights committee, and the un committee on economic, social and cultural rights. coordinate! monitor! participate! in april 2011 at the united nations in geneva, mdac launched a 60-page publication entitled, ?building the architecture for change: guidelines on article 33 of the un convention on the rights of persons with disabilities (crpd),? which is available in several languages. article 33 sets out the ways in which the convention should be implemented and monitored, and places an emphasis on the duty to include people with disabilities and their representative organisations. hungarian eu presidency hungary held the presidency of the eu council during the first half of 2011. at an international conference in budapest, mdac produced a paper for the international community on, ?disability rights in rhetoric and reality: bringing the hungarian eu presidency home?, highlighting the discrimination in the new constitution and the high numbers of people placed under guardianship and institutionalised. inclusive education for all children in collaboration with the european roma rights centre, the league for human rights and the open society justice initiative, in may 2011 mdac sent a submission to the un committee on the rights of the child (crc) on inclusive education in the czech republic. as a direct result, for the first time in the committee?s history, its concluding observations synthesised its recommendations with the standards on inclusive education in the un convention on the rights of persons with disabilities. mdac?s initiative was the first time in which the disability and ethnicity communities came together to speak with one voice on inclusive education for all children.advocacybriefing for budapest-based diplomats at mdac offices (2011)biennial report, 2011-12 | advocacyadvocacy17summer schoolmdac?s annual two-week ?mental disability law in practice? summer school fills a gap in global disability law education. grounded in a human rights-based approach, the summer school is the only international course focused on creating legal and policy change for people with disabilities. the summer school provide participants with a unique opportunity to engage with experts from a wide range of complementary (and competing) disciplines including law, psychology, political philosophy and clinical sciences.our 2011 and 2012 summer schools drew 41 participants from 28 countries and representing all continents. participants came from a wide range of backgrounds including human rights activists, users and survivors of psychiatry, advocates working for human rights organisations, staff of a number of ombudspersons offices, practising lawyers and phd students.the practical approach of the summer schools was focused on developing participants? knowledge of, and ability to use, international law including the un convention on the rights of persons with disabilities and its optional protocol. workshops included planning public advocacy back in participants? countries, and undertaking strategic litigation as a key tool for effecting change for people with disabilities. interactive sessions included a practical experience of monitoring a real institution for people with severe and multiple disabilities, interviewing people with intellectual disabilities and people with psycho-social disabilities, and mooting, in a mock court room.the course provided me with an invaluable opportunity to meet with others from around the world who are fighting for disability rights in one way or another in their own country. it allowed me to learn from some of the leading thinkers in this field. piers gooding, phd candidate in law, monash university, australia (participant, 2011)piers goodingparticipant, 2011biennial report, 2011-12 | advocacyadvocacy18research and advocacy in africaeyong mbuenlegal officerupon requests from various organisations in africa, in 2009, mdac decided to use some of its resources to investigate the human rights of people with psycho-social disabilities and people intellectual disabilities across the continent. the situation in africa is different to mdac?s traditional area of central and eastern europe, but we learned that many of the solutions to the challenges were similar. african ngos wanted us to help them with research and monitoring to issue reports about the situation there, they wanted to carry out advocacy, and they wanted to do strategic litigation. we worked hard to attract funds for to carry out work on the ground, starting with initial visits to engage partners in kenya and uganda during 2010. in 2011 we advised the secretariat of the african decade of persons with disabilities on a draft african disability protocol. we recommended pausing the drafting process to consult with and include disability experts in the working group on the rights of people with disabilities from the african commission on human and peoples? rights. this proposal was accepted: three new members joined the working group, including a person with disability, and the drafting process was on-going at the end of 2012. in august 2011, mdac sent written comments to the secretariat about another initiative, namely the development of a new continental plan of action for africa, as a result of the extension of the african decade of persons with disabilities from 2009 to 2019. in september 2012 the secretariat invited mdac to provide comments on the draft plan of action, which we did, and the process was ongoing at year end. in january 2012, mdac and mental health worldwide supported local ngos in ghana by urging the ghanaian president to ratify the un convention on the rights of persons with disabilities (crpd), and to pass the mental health bill which had been sitting in parliament for seven years. the bill became law in march 2012 and the crpd and its optional protocol were ratified in july 2012. in february 2012 we held a training event for 12 practising lawyers from east africa (kenya, tanzania and uganda) in kampala, uganda. the theme of the training was on using the crpd to represent people with disabilities in cases eighty percent of people with disabilities live in developing countries where people with disabilities are the poorest among the poor. those with psycho-social or intellectual disabilities are among the most marginalised of all.eyong mbuen, mdac legal officerbiennial report, 2011-12 | advocacyadvocacy19?mental clinic? in kampala, uganda (2010)involving the rights to liberty and freedom from ill-treatment and the right to vote. for many of the participants this was the first time they developed strategies about how to use the crpd in domestic courts. in the same month, we participated in a regional consultation for africa in addis ababa, ethiopia, on preventing torture and protecting victims of torture. our suggestions included a recommendation that laws about detention on the basis of a disability should be reviewed against crpd standards, and this was included in the outcome document of the forum. mdac contributed to building the capacity of several african organisations of people with psycho-social disabilities and people with intellectual disabilities addressing the right to legal capacity and the challenges to implementation in africa. in march 2011 delivered training in johannesburg, south africa, at the inclusion international and inclusion africa annual regional forum, which was attended by representatives of organisations from 13 african countries. in october 2011 we participated in a workshop organised by the pan-african network of people with psycho-social disabilities, which attracted member organisations from seven african countries. kenyathrough 2011 and 2012, mdac hired researchers to gather evidence on decision-making for people with intellectual disabilities and people with psycho-social disabilities. we reviewed laws, and held interviews with people with disabilities and their families. the purpose was to issue a report to inform the on-going process of legal capacity law reform. zambia in collaboration with local ngos, we investigated the intersection between human rights, traditional healing and psycho-social disabilities. the purpose was to find out the extent of ill-treatment and abuse, and to identify ways in which ill-treatment in healthcare settings and in the community could be ended. via local monitors we conducted over 80 interviews across zambia, and visited traditional healing centres and mental health facilities.south africain collaboration with the university of seattle, we welcomed law graduate anupa iyer as a fellow for one year from september 2011. she led an exploratory investigation into violence and abuse against women with intellectual disabilities in the western cape, south africa.biennial report, 2011-12 | advocacyadvocacy20save the vote! the problem:it?s a shocking fact that people with intellectual disabilities and people with psycho-social disabilities, and those deemed ?mad?, are denied their right to vote and stand for election in many countries. the venice commission, an influential constitutional law body affiliated to the council of europe, adopted a document in october 2010 recommending that parliaments put in place legislation to allow judges to remove the right to vote of a person with disability if the person ?lacks proper judgment?. mdac coordinated a campaign to reverse this outright discrimination. with the european disability forum, mdac organised a public discussion on 15 june 2011, in venice, italy, to scrutinise the legality and feasibility of the commission?s proposal. the next day, participants at the public discussion, along with human rights watch, the international disability alliance and a range of other international non-governmental organisations issued a statement, which was distributed to members of the venice commission.online campaigna campaign website ?www.savethevote.info ? went live right before the official launch event in new york on 8 september 2011, at the annual gathering on disability rights at the united nations. the website contained campaign information and encouraged readers to take action by signing petitions, sending emails to the venice commission, and meeting members directly. un convention on the rights of persons with disabilitiesarticle 29: participation in political and public life?states parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to:(a) ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected.worldwide, women and others have fought prejudices to secure their right to vote. if their struggle for universal suffrage tells us one thing, it is that we should count the vote of every person rather than exclude those belonging to a certain group. what hangs in the balance in this room is nothing smaller than the promise of democracy.oliver lewis, mdac?s executive director, addressing a plenary session of the venice commission, 16 june 2011biennial report, 2011-12 | advocacyadvocacy24legal capacity mdac was central in bringing to international attention one of the most acute human rights abuses in europe today: guardianship. we have researched, campaigned, litigated and advocated for over a decade on this issue, spearheading a change in rhetoric and law in many countries. currently mdac is engaged in providing technical assistance in eleven european jurisdictions undertaking law reform. guardianship is akin to civil death, which strips a person of their autonomy and dignity. as a result, people with intellectual disabilities and people with psycho-social disabilities are denied the right to work (plunging already poor people into greater poverty), the right to marry, the right to decide on medical treatment, and crucially, the right to vote and stand for election ? a key element of democracy and european values. in 2011-12 mdac placed a high priority on providing policy and decision-makers and civil society organisations with knowledge on the right to legal capacity by organising capacity-building events. these events enabled people with disabilities and ngos to find out new information and also to learn new advocacy skills to demand law reform. during this time mdac organised and presented training events in bulgaria, czech republic, hungary, latvia, lithuania, moldova, portugal and the uk. we also trained judges from around europe by acting as experts for the academy of european law in trier, germany. these capacity-building activities enabled mdac to address the meaning of article 12 of the convention on the rights of persons with disabilities (crpd), on the difference between a guardian and a support person, and on what sorts of safeguards should exist. mdac facilitated information exchange on promising approaches to implementing the un disability convention, on ways of introducing supported decision-making and how to abolish substituted decision-making regimes.in 2011 and 2012 the czech republic, latvia and russia completed law reform. the czech republic abolished plenary guardianship and introduced alternatives including supported decision-making. latvia managed to abolish plenary guardianship, but failed to introduce supported decision-making. russia introduced partial guardianship into law but did not abolish plenary guardianship or introduce alternatives to guardianship. mdac urged international human rights mechanisms to push governments to reform their legal capacity systems. we took part in several sessions of the un committee on the rights of persons with disabilities the implications of mdac?s efforts are felt not just in europe but around the world. at a global level, inclusion international has greatly benefited from mdac?s legal expertise and human rights approach to disability issues. our members are able to draw on mdac to help shape litigation strategies and policy advocacy. we use mdac?s efforts and accomplishments as examples of success and build on these efforts to make change in countries globally.connie laurin-bowie, executive director, inclusion internationalbiennial report, 2011-12 | advocacyadvocacy25in geneva and provided the committee with information on the right to legal capacity for their periodic reviews of spain (2011) and hungary (2012). in both cases, the committee?s concluding observations reflected mdac?s submissions. these recommendations were used in our hungarian advocacy work. with domestic ngos we sent submissions addressing the right to legal capacity to the un human rights committee when it examined compliance the compliance of several with the international covenant on civil and political rights including bosnia and herzegovina, bulgaria, czech republic, lithuania, portugal and slovakia.in sum, legal capacity law and policy reforms are on the agenda across europe but the necessary legislative and policy steps to comply with the crpd still lack clarity. there is a huge need for information on advancing this crucial right for persons with intellectual disabilities and persons with psycho-social disabilities, including involving them in reform processes.s?ndor gurbai, project manager, at a training event in lithuania (2011)guardianship is akin to civil death, stripping a person of their autonomy and dignitybiennial report, 2011-12 | advocacyadvocacy26preventing torturebringing disability torture to the world?s attention in november mdac participated in the global opcat forum organised by the association for the prevention of torture. mdac?s executive director presented on a panel with juan m?ndez, un special rapporteur on torture, and highlighted the need for inspectorates to be more inclusive with regards to the variety of detention settings visited, and to involve users and survivors of mental health services who are ?experts by experience?, as human rights monitors. in december, mdac participated in the ?regional consultation for europe on prevention of torture and protection of victims of torture ? especially persons deprived of their liberty? at the united nations in geneva. mdac made a number of interventions and pointed out that the un convention on the rights of persons with disabilities should be respected in all places of detention. convening action on detention and torture in november we brought together several experts in strasbourg for a roundtable discussion on ?evolving standards in preventing torture and ill-treatment against persons with disabilities?. people working for un and european bodies, as well as ngos and academics took part. the objective was to increase cooperation among the participants, to underscore the importance of regular, independent and effective visits to psychiatric and social care institutions, and to discuss evolving international standards. the event was held jointly with the human rights implementation centre at the university of bristol and the centre for disability law and policy at the nui galway school of law, ireland. results were published in the international journal of human rights in august 2012.patients in uniforms at butabika mental health hospital, kenya, 2010biennial report, 2011-12 | advocacyadvocacy27p?tur haukkson, icelandic psychiatrist, and member of the european committee for the prevention of torture, 2000-2011as a member of the committee on the prevention of torture i became familiar with the work of the mdac and its effects, and i have worked and collaborated with their staff, including work that has not been made public. the paths of mdac and the cpt have crossed on several occasions, and when a cpt delegation has followed in the wake of the mdac, i have seen with my own eyes the results of their work, not merely as regards policy, legislation and judicial practice, but even more importantly, a change of attitudes, observed on the spot in the homes visited.a stubborn paternalistic approach, with impunity for any ill-treatment, has been seen to develop towards a respectful approach, with proper individualised care. this is a major achievement, no small feat.p?tur hauksson (icelandic psychiatrist, and member of the european committee for the prevention of torture, 2000-2011) biennial report, 2011-12 | finances28financesbesides core funding from the open society foundations, mdac is grateful to have received donations from a variety of trusts and foundations including the sigrid rausing trust, zennstr?m philanthropies, and the trust for civil society in central and eastern europe. in addition, mdac received funds for its research from the eu public health agency, the uk foreign and commonwealth office, the seattle university school of law, the european union agency for fundamental rights (via the european human consultancy) and the dutch embassy in budapest. in december 2011 mdac became a ?public benefit organisation? under hungarian law, therefore a public benefit report according to hungarian requirements and an ifrs financial report are also produced each year. in 2012, a new financial system was introduced which enabled mdac to modernise and restructure its budgeting and accounting procedures. open society foundations as founder of mdac conducted a thorough audit and put the organisation to the top of the list of grantees regarding financial accountability. due to the weakening of the hungarian forint towards the last quarter of the year, mdac was able to make a certain profit on currency transactions, resulting in a small surplus by the end of the year. the same fluctuation resulted in financial loss at the end of 2012. transparency and accountability are essential components for advancing human rights. we are committed to exemplifying the highest standards within our own governance structurebetti nagyfinance and administration directorbiennial report, 2011-12 | finances29assets euryear 2011year 2012fixed assets13,31010,906intangible assets1,1921,740property and equipment12,1179,167financial investments–current assets321,820283,675inventories–receivables39,63333,529marketable securities–cash and cash equivalents282,188250,146accrued and deferred assets 36,5382,842total assets371,668297,423liabilities and equity euryear 2011year 2012equity137,82092,094foundation capital765820change in equity130,508146,894fixed reserve–revaluation reserve–profit for the year (primary and pbo activities)6,547-56,581profit for the year (business activities)-961provisions (reserve fund)25,99926,091liabilities41,67723,156subordinated liabilities–long-term liabilities–current liabilities41,67723,156accrued and deferred liabilities166,172156,082total liabilities and equity371,668297,423*exchange rates used: 31/12/2011 and 31/12/2012 of the hungarian national bank. for each year respectivelybalance sheetbiennial report, 2011-12 | finances30 euryear 2011year 2012trusts and foundationsopen society foundations human rights and governance grants program and disability rights initiative495,273471,821sigrid rausing trust68,78769,498zennstr?m philanthropies155,593132,261equal rights trust4,077-trust for civil society in central and eastern europe (cee trust)48,99917,216governments and international organisationseu public health agency via king?s college london (aspen22,045-uk foreign and commonwealth office64,157-european union agency for fundamental rights9,698-embassy of the kingdom of the netherlands-4,082universitiesseattle university school of law6,64827,217central european university-3,363private donors2,05918,657private donors through mdac-uk4,53318,712other revenueinterests and currency gain27,84017,527other revenue294,757income from activities-3,042total revenue909,738788,153programme costs: products and services purchased270,373314,796staff costs including programme and administration staff535,606442,978operations expenses83,31249,082other expenses (financial) and depreciation13,90131,224total expenditure903,192843,773net end of year result6,547-55,620*exchange rates used: 31/12/2011 and 31/12/2012 of the hungarian national bankmdac?s annual audited accounts as well as public benefit reports for 2011 and 2012 are available at www.mdac.info. profit and loss statementbiennial report, 2011-12 | finances31revenue streams for 2011 and 201220112012other revenueprivate donorsuniversitiesgovernments andinternational organisationstrusts and foundations0255075100800biennial report, 2011-12 | mdac people, 2011-1232mdac people, 2011-12board of trusteespeter bartlett (chair until march 2011), felicity callard (chair from march 2011), g?bor liener (treasurer), robert kushen (secretary), michael bach, ivan fi?er, anna lawsonmdac-uk trusteessamuel coote (chair), andreas rindler (treasurer), fiona fraser (secretary), ivan fi?er, jennifer randallstaffkiry no?mi ambrus fundraising development manager ? until february 2012 ngila bevan project manager ? un litigation and advocacy manager ? until february 2012 ?gnes cs?sz?r programmes assistant ? until july 2012 eszter csill?ry financial and executive assistant ? until april 2011 slavica cubric legal officer ? from march until july 2012 ibolya fabula finance officer ? until march 2011 g?bor gombos senior advocacy officer ? until december 2011 s?ndor gurbai project manager ? legal capacity g?bor halmai advocacy officer iqtadar hasnain fundraising development manager ? from june 2012 anna hornyik finance assistant ? from april 2011 7b[aiwdzhw?lwdael_??jwcwcel_?i[d_ehb[]wbe_y[h?hec@kbo(&’(anupa iyer legal officer ? from october 2011 until september 2012 dorottya karsay project manager ? detention monitoring zuzana kovalova legal officer ? from march until december 2011 lajos labossa legal and communications assistant oliver lewis executive director reima ana maglajlic research and monitoring director ? from september 2011 eyong mbuen legal officer betti nagy finance and administration director ? from april 2011 lycette nelson litigation director nat?lia simon receptionist ? until december 2011 andrea spit?lszky legal officer orsolya s?veg cleaner ? until march 2012 kathryn vandever policy and advocacy officer ? until march 2011 n?ra varga cleaner ? from july 2012 biennial report, 2011-12 | mdac people, 2011-1233partner ngos and lawyersmdac works with a wide array of partner organisations to achieve our joint goals. we also work with individual lawyers in various countries.legal monitors: dmitri bartenev (senior legal monitor russia), zuzana durajova (legal monitor czech republic), aneta genova (legal monitor bulgaria), maros matiasko (legal monitor slovakia), barbora rittichova (legal monitor czech republic)global partnersamnesty international, association for the prevention of torture , center for reproductive rights, disability rights international, human rights watch, inclusion international, international disability alliance, international federation of acat, international rehabilitation council for torture victims, open society foundations human rights initiative, open society foundations public health program, open society justice initiative , penal reform international, world network of users and survivors of psychiatryregional partnerseuropean disability forum, european network of (ex-)users and survivors of psychiatry, european roma rights center, human european consultancy, human rights student initiative of the central european university, inclusion europe, mental health europe, pan-african network of people with psycho-social disabilitiesnational partnersbulgaria bulgarian center for not-for-profit law, bulgarian helsinki committee croatia disability ombudsman of croatia, the shine czech republic czech national disability council, kolumbus, instand, league of human rights, public defender of rights (ombudsman), quip ? association for change, spmp/inclusion estonia chancellor of justice, estonian patient advocacy association hungary awakenings foundation, hungarian association for persons with intellectual disability (?fo?sz), hungarian association of the deaf and hard of hearing (sinosz), hungarian civil liberties union, hungarian helsinki committee, mental health interest forum (p?f), national council of disabled people?s organisations (feszt), national federation of disabled people?s associations (meosz), office of the commissioner for fundamental rights, the hungarian autistic society, voice of soul association ireland amnesty international ireland kenya the kenyan section of the international commission of jurists (icj kenya) kosovo kosova rehabilitation centre for torture victims latvia resource center for people with mental disability ? zelda lithuania global initiative on psychiatry, human rights monitoring institute moldova undp moldova, un resident coordinator in moldova poland helsinki federation of human rights, polish association for people with intellectual disabilities romania center for legal resources russia independent psychiatric association of russia, perspektiva slovakia association for support of people with intellectual disabilities (zpmp) spain spanish committee of representatives of persons with biennial report, 2011-12 | mdac people, 2011-1234disabilities uganda mental health uganda united kingdom doughty street chambers, mencap northern ireland ukraine all-ukrainian ngo coalition for persons with intellectual disability zambia mental health users network of zambiaacademic partnerscentral european university, centre for disability law and policy – nui galway, faculty of social work, university of ljubljana, institute of psychiatry – king?s college london, university of bristol human rights implementation centreconsultantspeter bartlett, jerome bickenbach, norbert bogn?r, zs?fia de?k, gavin garman, rob gordon, maths jesperson, p?tur hauksson, mat kinton, stephen klein, allen miligan, anna nilsson, gerard quinn, jasna russo, richard ruston, mikl?s s?ndor, jolijn santegoeds, kay sheldon, rose sibley, ?va szeliinterns and volunteersmdac is grateful to the following people who gave mdac several months of their valuable time for free.2011steven allen, joana alves, helen blaber, brian bwesigye, kateryna dronova, alexandra dubova, sarah french, oana girlescu, brandon golob, esther kamau, anna marupova, sophie pach, krisztina palko, arunsiri ruengpetch-yarlett, tesfahun terrefe2012jelena baran, caoimhe cusack, ciara flatley, lucy humphreys, jibek ibraeva, wilma isaboke, inga ivanovaite, stephanie kim, jennifer kline, jana offergeld, j?n proke?, krisztina s?rfalvy, sarah trotterthe challenges faced by people with disabilities back home in kenya are huge. with its international reputation for defending the rights of people with disabilities around the globe, mdac was a great place to learn about human rights from a warm, kind and dedicated team.wilma isaboke, mdac intern (2012)wilma isabokemdac intern (2012)w www.mdac.info mentaldisabilityadvocacy @mdachungaryBiennial Report, 2011-12  Photos Rusi Stanev and his campaign for justice is why MDAC exists. Bundled away in an ambulance in 2002 on the order of a guardian he was placed in an inaccessible institution for people with mental disorders where he was forced to live in the most appalling conditions for over eight years. MDAC and the Bulgarian Helsinki Committee helped Mr Stanev to win his case at the European Court of Human Rights. Front cover Rusi Stanev Yana Buhrer Tavanier Back cover Rusi outside the European Court of Human Rights, 2009, with former MDAC Legal Officer Victoria Lee and MDAC Legal Monitor Aneta Genova Supported by MDAC, read how Mr Stanevs victory at the European Court of Human Rights has changed the legal landscape across Europe for people with disabilities on pages 67 . All photos throughout this report are Mental Disability Advocacy Center unless otherwise stated. Hercegprms utca 11 H-1051 Budapest Hungary T 36 1 413 2730 F 36 1 413 2739 E mdac@mdac.info W www.mdac.info  Message from our Honorary President Ispent six years as Commissioner for Human Rights of the Council of Europe, and during that time Ivisited all 47 countries of the Council of Europe. In several countries Iheard, and saw first-hand, how people with disabilities are left to live on the edges of our societies, excluded from our communities. As Commissioner Ifocused on the rights of people who find themselves in situations of vulnerability. MDAC is akey organisation which understands the issues, and provokes governments to remind them of their human rights commitments. MDAC provokes governments to remind them of their human rights commitments Now with so many governments cutting social assistance due to austerity measures, the work of non-governmental organisations such as MDAC is even more important. Thats why on stepping down as Commissioner in March 2012 Iwas delighted to accept MDACs invitation to join the organisation as its Honorary President. Iurge you to read this Biennial Report, and to contribute to the fight against exclusion and prejudice that people with intellectual disabilities and people with psycho-social disabilities face every day. You can make afinancial contribution viaour website. Thomas Hammarberg @TomHammarberg Prior to his role as Commissioner for Human Rights which he held from 2006 to March 2012, Thomas Hammarberg has held various senior human rights appointments including Secretary General of the Stockholm-based Olof Palme International Center (2002-2005), Ambassador of the Swedish Government on Humanitarian Affairs (1994-2002), Secretary General ofSave the Children Sweden (1986-1992). He was Secretary General of Amnesty International (1980-1986), and received the Nobel Peace Prize on behalf of the organisation in 1977.  Message from our Chair of the Board MDAC has benefited enormously from the insights, labours and intellect of Professor Peter Bartlett, who stepped down as Chair of the Board in 2011. Peters own research in the field of mental health law has been central to that fields international intellectual reinvigoration in the past two decades. In taking over the Chair from Peter, Ihave reflected on what is most characteristic about MDAC. Ihave always thought of MDAC as aprovocation as an organisation whose energy, dynamism and tough rigour allows it not only to agitate and take action itself, but to press others (whether judges, governments or legislators) to change and take action. While the signature programme of MDAC is strategic litigation, in the past few years our capabilities in advocacy, monitoring and capacity-building have grown apace. The creativity that MDAC staff and volunteers have shown in the last two years in working across different media, at various scales of action, and with new as well as long-standing partners to work towards our various human rights goals has been inspiring. As showcased on pages 2021 of this annual report, our Save the Vote campaign is agood example. This creativity is indicative, too, of the great strengths of arelatively small NGO. When operating at full stretch, MDAC has the flexibility, ingenuity and incisiveness to take rapid and effective advantage of the political and legal configurations in which it suddenly finds itself. And it is undoubtedly the case that MDAC grasps with alacrity the precious opportunities afforded by particular moments that sometimes open without warning within the international human rights and disability field. It is my hope that in the next few years, we will be able to push our flexibility and ingenuity even further. This will allow us to make best use of the possibilities and challenges that are opened by virtue of the fact that an ever-growing number of countries have ratified the UN Convention on the Rights of Persons with Disabilities (CRPD). The Convention ushers in many complex legal, policy and conceptual challenges and conundrums. It also has the potential to encourage new synergies to emerge across the various communities and social movements that are working to counter discrimination on grounds of disability and mental ill health whether they are mental health professionals, the disability rights movement, or within wider human rights communities. MDAC draws together both within its staff and across its Board diverse expertise and experiences of activism that relate to these various communities and to our core constituencies, children and adults with intellectual and psycho-social (mental health) disabilities. We are ideally placed to foment new alliances as well as to maximise the gains that are to be had from ensuring that these overlapping, but often distinct, communities of interest work more closely together. That we pride ourselves on our dynamism is of particular importance. For this moment, in which enormous gains have been won through the adoption of the CRPD, is also one of great danger. This is not least because of the many difficult political, economic and cultural forces that are pushing against the full implementation of the CRPD. After all, we are now entering the sixth year of the global economic crisis, and history makes it ferociously clear that such crises tend not to be kind to people with disabilities. In my own jurisdiction of England and Wales, for example, the number of recorded incidents of disability hate crime has grown by 60 between 2009 and 2011. It is my hope that in the next few years, we will be able to push our flexibility and ingenuity even further. Such disturbing statistics, and there are many more that we could quote, make it all the more crucial that MDAC one of the few only international organisations with the specific expertise to address the range of abuses faced by people with intellectual and psycho-social disabilities is able creatively and effectively to work towards advancing its human rights goals. The bold actions of our team are dependent, of course, upon adequate organisational finances not just now, but into the future. To this end, we have embarked on afundraising campaign Making aWorld of Difference. This will ensure that MDAC has the resources to intervene and make tangible differences to peoples lives in the future. Our provocations in both word and deed are needed in the field of human rights and disability now more than ever. If you would like to support us with this campaign, Iwould be really pleased to hear from you. Felicity Callard @FelicityCallard Felicity Callard PhD, is Senior Lecturer in Social Science for Medical Humanities, Durham University and aVisiting Researcher in the Service User Research Enterprise, Kings College London (Institute of Psychiatry). Her co-authored book Mental Illness, Discrimination and the Law Fighting for social justice was published by Wiley-Blackwell in early 2013.  Message from our Executive Director At MDAC we dont deal with pleasant issues. In fact we seek to help some of the most marginalised people in our societies, vulnerable to financial exploitation, sexual abuse and abandoned by their families, the state, and society at large. Austerity budgets are forcing cuts on national human rights institutions who are supposed to hold governments to account. Many national NGOs are now compromised in their advocacy because they receive substantial funding from governments. The demand on independent NGOs like MDAC to fearlessly advocate for human rights is greater now than it has been since the organisation was established in 2002. MDAC focuses on achieving sustainable law and policy reforms which benefit many people. We do this by referring to human rights standards which governments have agreed to comply with. Human rights mechanisms, like the European Court of Human Rights, have been under-used and unresponsive to the needs of people who are labelled with disabilities. In collaboration with NGOs in many countries we have tried to change this by taking test cases to courts, initiating law reform, and empowering people with disabilities to be their own agents of change. People with disabilities are treated as if they dont exist. We make them clearly and strongly visible to the world. People with disabilities are treated as if they dont exist, forgotten politically, socially and economically. However, they do exist and we make them clearly and strongly visible to the rest of the world. We work with the international community because changes trickle down to country level and can result in long-lasting change for peoples lives. In this biennial report we outline how we have contributed to advancing human rights. I would like to thank our small cadre of staff and volunteers, our Facebook fans and our Twitter followers, and our growing number of supporters. Looking to the future, our biggest challenge is to follow through on the cases we have won and make sure that rights become reality. We cannot do this alone, so please contact me to discuss how you can help. Oliver Lewis @olewis75  Strategic litigation We select individual cases that have the potential to force agovernment to implement or change alaw so that many more people benefit. Strategic litigation is aslow-burn activity which has to be conducted methodically and with persistence. MDAC has pride in our ability not only to protect and promote peoples rights, but how we have contributed to and in several fields led the transformation of the very framework in which the international legal community approaches questions of human rights in relation to mental health and intellectual disability. In 2011-12 many of the cases which we filed more than five years ago came to fruition. Among the successes were Stanev v. Bulgaria(social care can be unlawful detention), Ples v. Hungary (the need for mental health treatment cannot in itself justify detention), Bures v. Czech Republic (strapping someone to abed can amount to unlawful and inhuman treatment) and ZH v. Hungary (failing to accommodate aprisoners multiple disabilities constitutes torture, inhuman and degrading treatment). Its MDACs job to use the law as atool to help people regain their rights. The challenge that we now face at MDAC, as the law develops across Europe, is ensuring that judgments actually have result in concrete changes in the lives of our clients and for people with disabilities much more broadly. Each individual case we work with highlights institutional structures which require challenging to advance human rights compliance by states. As the law continues to develop, we will move our advocacy from the courts back to the countries concerned.  Successes European Court of Human Rights cases RusiStanev v. Bulgaria In January 2012 the Grand Chamber of the European Court of Human Rights delivered alandmark judgment in one of our cases, which potentially transforms the way in which social care is delivered for people with disabilities across Europe. MDAC and the Bulgarian HelsinkiCommittee represented Mr Stanev in his attempts to bring domestic proceedings and at the European Court. The London-based NGO Interights intervened as athird party in the case. The so-called toilets, also located in the yards, represented decrepit shelters with holes dug in the ground. The state of these facilities was execrable further, walking to them on the frozen, slippery ground was potentially dangerous, especially at night. Residents visibly used the surrounding outside areaas atoilet. Findings of the European Committee for the Prevention of Torture, describing Pastra social care institution Thanks to this judgment, European countries must end policies and practices that unnecessarily restrict the liberty of thousands of people with disabilities in the provision of social care. Lycette Nelson, Litigation Director At the end of 2012, RusiStanev was living in aprotected home, which still placed substantial restrictions on him. The Strasbourg court found that it was aviolation of his human rights for Mr Stanev not to have the power under Bulgarian law to initiate acourt proceeding to regain his legal capacity. Despite this, the Bulgarian government had not changed the law, and the Bulgarian prosecutor, who has authority to initiate aproceeding for Mr Stanev to regain his legal capacity, had refused to do so. MDAC continued to advocate for Mr Stanev to receive the services he needs to live in the community, and our lawyer continues to represent him.  Milan Skorav. the Czech Republic not a voluntary patient In the year 2000 the local government had Mr Skora, at that time 51 years old, placed under guardianship without even telling him. He was represented by an employee of the court, who never met him or took instructions from him. Five years later, after an argument with his girlfriend, he was taken to apsychiatric hospital. He didnt show any signs of mental illness, but was forcibly injected with psychiatric drugs which damaged his eyesight for ayear. On day five out of his twenty days in hospital, Mr Skoracontacted lawyers working for the Czech NGO the League of Human Rights and MDAC. The lawyer was not allowed to see him because his guardian did not give permission. ZH v. Hungary discrimination in prison Mr H is a25 year-old man who is deaf, does not use verbal communication, cannot read or write, and has an intellectual disability. His only means of communication is aspecific sign language and his mother is the only person who understands him. In 2011 he was arrested for theft and was interrogated in the absence of his mother. He was held in pre-trial detention for three months where his mother was only allowed to visit him every two weeks, so he was effectively denied the possibility of communicating with anyone. MDACs role in this case was to submit athird party intervention to the European Court of Human Rights. Ples v. Hungary detention in psychiatric institution for no reason In 2007 aHungarian court ordered Mr Ples to be detained in apsychiatric hospital without having any legal authority to do so, because Mr Ples had refused to undergo avoluntary psychiatric evaluation. As aresult he spent nearly one month in ahospital under acompulsory inpatient treatment order, including two weeks in alocked ward. Pending European Court of Human Rights cases Center for Legal Resources on behalf of Valentin Cmpeanu v. Romania – left to die in freezing conditions Mr Cmpeanu grew up in state care. He had an intellectual disability and was HIV-positive. When he turned 18 and could no longer stay in achildrens institution, he was moved to alarge institution for adults. There he was denied adequate healthcare and died in sub-zero temperatures. The Center for Legal Resources, aRomanian NGO, lodged an application to the European Court of Human Rights on his behalf because he did not have family or aguardian to vindicate his rights. MDACs amicus curiae brief laid out the international law regarding abuse in institutions, and access to justice. Laschaevsky v. Russia – deprived of liberty through operation of law Mr Laschaevsky is a38-year-old Russian man. He was deprived of his legal capacity in 1997. In 2009, the person who had been his guardian asked to be removed as his guardian, but no one was appointed to replace her. Lacking aguardian, Mr Laschaevsky was considered under Russian law to be helpless, that is, unable to care for himself. He was involuntarily admitted to apsychiatric hospital. By operation of law and without any involvement by acourt, the psychiatric hospital became his guardian. MDAC represented him in domestic proceedings to challenge his deprivation of liberty on purely social grounds. When these were unsuccessful, MDAC lodged an application at the European Court of Human Rights on his behalf in 2011 claiming violations of his right to liberty under Article 5 and his right to a private and family life under Article 8. Delovav. Russia plenary guardianship removed all decision-making powers Ms Delova, a51-year-old Russian woman, has an intellectual disability. Despite expert reports that she was able to manage her small income, she was placed under plenary guardianship, with all of her legal rights restricted, because Russian law did not allow any alternative to plenary guardianship. In addition to filing acase at the Russian Constitutional Court, Ms Delovafiled an application at the European Court of Human Rights asking for finding that her rights to private and family life were violated by full deprivation of her legal capacity. Lobastovav. Russia – director of institution appointed guardian instead of mother Successes Domestic cases In 2011-12 MDAC helped in twenty cases before domestic courts and administrative authorities. In the domestic cases highlighted below, we refer to the clients by their initials rather than by their full names to protect their confidentiality. Full names are given in the cases before the European Court of Human Rights because their names are public once cases have been filed unless an applicant has specifically requested that he or she remain anonymous. In the Russian Constitutional Court – lack of alternatives to plenary guardianship unconstitutional In June 2012 the Russian Constitutional Court quashed as unconstitutional the lack of alternatives to plenary guardianship. This case, supported by MDAC, challenges the complete restriction of rights of the estimated 300,000 people who are currently under guardianship in Russia, all stripped of their personhood and of their legal rights. The Constitutional Court ordered the Russian parliament to enact anew law which better respects peoples decision-making capacity. In the Slovak Constitutional Court -mental health condition alone insufficient to justify guardianship In November 2012 the Constitutional Court found in an MDAC-initiated case that guardianship cannot be imposed on someone simply on the basis of evidence of the persons mental health condition. Courts need to take into account other factors such as the persons family and social situation. The Court noted that the understanding of disability has evolved in law and that, while in the past decisions about deprivation of legal capacity were made with aview to protecting third parties and for the public interest, courts today must primarily consider the rights of the person concerned. In the Szentendre Town Court (Hungary) support network recognised by court Ms EM is awoman with apsycho-social disability. In 2009, after she had made complaints against the social care institution where she lives, the local government initiated her placement under guardianship. She does not want to be under guardianship because she has asupport network and is able to manage her own affairs. After several hearings in the case in early 2012, the judge ruled in her favour finding that Ms EMs ability to use the support she had precluded the necessity of any restriction on her legal capacity. Pending Domestic cases MDAC was assisting clients in the following cases which were pending at the end of 2012. Ms AV (Czech Republic) Adistrict court deprived Ms AV, a53-year-old woman with apsycho-social disability, from exercising her parental rights and denied her the opportunity of visiting her daughter. She is challenging the ruling because the district court did not allow her to introduce any evidence in support of her parenting abilities. Mr KD (Czech Republic) The applicant is a42-year-old man who suffers from arare disease called Wilsons disease, which causes both physical disabilities and, in some cases, the development of mental health problems. Mr KD was placed in apsychiatric hospital for an indefinite period after being found not guilty by reason of mental disability for sexual offenses. The hospital did not accommodate his disabilities, causing him physical pain, humiliation and adeterioration of his mental state. EP (Czech Republic) The applicant is a12 year old boy with autism who had been attending amainstream school with an assistant provided by the school. The school informed EPs parents that it could no longer provide the assistant and that the parents would have to pay for the assistant themselves. The parents cannot afford this. As a member of the Registry of the European Court of Human Rights I worked on some disability cases. The realisation of how difficult it is for people with disabilities to be granted access to justice, especially if they are under guardianship, struck me then, and strikes still strikes me now. One strategic case can change the lives of many. Ms ES (Czech Republic) The applicant is aRomawoman who has an intellectual disability. Her children were removed from her because of her disability, and proceedings to terminate her parental rights were commenced. Two of her children, who also have disabilities, were placed in institutions. She is claiming she was the victim of disability-based discrimination. Mr SV (Hungary) The applicant was deprived of his legal capacity in 2004 and this should have been reviewed after five years. His placement under guardianship has never been reviewed. Mr VK (Russia) The applicant is a man with an intellectual disability. He and his partner lived in an institution and had a daughter, who was automatically placed in an orphanage at birth. The applicant left the institution, set up a home independently and requested to have his daughter live with him, the request being supported by the social services. The orphanage, as the girls custodian, refused to hand her over to her father. A few days before the girls fifth birthday the Russian courts ordered that Mr VKs daughter should be handed back to him. The case is pending before the European Court of Human Rights, where Mr VK claims recognition of violation of his right to a family life, along with that of his daughter. Ms SL (Russia) The applicant, a 23-year-old woman with an intellectual disability, was placed under the guardianship of her mother. When she was 20 her mother placed her in a social care institution. Although she wanted her mother to be her guardian, Russian law mandates that the institution is the guardian for people placed in institutions and under guardianship, creating obvious conflicts of interest. Mr EV (Slovakia) The applicant had been under guardianship for six years before being placed in asocial care institution by his stepfather/guardian in 2011. He wants to restore his legal capacity and to challenge his detention in the institution. Ms BB (Slovakia) The applicant is a59-year old woman with disabilities who was denied support services by the local government to enable her to continue to live at home. Her case argues that the Slovak governments denial of support violates her right to live in the community, as set out in the UN Convention on the Rights of Persons with Disabilities. Ms EA(Portugal) The applicant is a14-year old Irish girl who is astrong swimmer. She also has Down syndrome. She and her parents were on holiday in Portugal and wanted to pay money to acompany which offered the opportunity for tourists to swim with dolphins. The company refused to allow her because of her disability. The case, before the Portuguese Equality Authority, challenges this direct discrimination.  Advocacy MDACs uses international law to remind governments that they should take certain actions. Working directly with governments, MDAC also encourages international human rights mechanisms to make progressive recommendations to governments. In particular we targeted the UN Committee on the Rights of Persons with Disabilities, the UN Human Rights Committee, and the UN Committee on Economic, Social and Cultural Rights. Coordinate Monitor Participate In April 2011 at the United Nations in Geneva, MDAC launched a60-page publication entitled, Building the Architecture for Change Guidelines on Article 33 of the UN Convention on the Rights of Persons with Disabilities (CRPD), which is available in several languages. Article 33 sets out the ways in which the Convention should be implemented and monitored, and places an emphasis on the duty to include people with disabilities and their representative organisations. Hungarian EU Presidency Hungary held the presidency of the EU Council during the first half of 2011. At an international conference in Budapest, MDAC produced apaper for the international community on, Disability rights in rhetoric and reality bringing the Hungarian EU Presidency home, highlighting the discrimination in the new Constitution and the high numbers of people placed under guardianship and institutionalised. Inclusive education for all children In collaboration with the European RomaRights Centre, the League for Human Rights and the Open Society Justice Initiative, in May 2011 MDAC sent asubmission to the UN Committee on the Rights of the Child (CRC) on inclusive education in the Czech Republic. As adirect result, for the first time in the Committees history, its concluding observations synthesised its recommendations with the standards on inclusive education in the UN Convention on the Rights of Persons with Disabilities. MDACs initiative was the first time in which the disability and ethnicity communities came together to speak with one voice on inclusive education for all children. Summer school MDACs annual two-week Mental Disability Law in Practice summer school fills a gap in global disability law education. Grounded in a human rights-based approach, the summer school is the only international course focused on creating legal and policy change for people with disabilities. The summer school provide participants with a unique opportunity to engage with experts from a wide range of complementary (and competing) disciplines including law, psychology, political philosophy and clinical sciences. Our 2011 and 2012 summer schools drew 41 participants from 28 countries and representing all continents. Participants came from a wide range of backgrounds including human rights activists, users and survivors of psychiatry, advocates working for human rights organisations, staff of a number of Ombudspersons offices, practising lawyers and PhD students. The course provided me with an invaluable opportunity to meet with others from around the world who are fighting for disability rights in one way or another in their own country. It allowed me to learn from some of the leading thinkers in this field. Piers Gooding, PhD candidate in Law, Monash University, Australia (participant, 2011) The practical approach of the summer schools was focused on developing participants knowledge of, and ability to use, international law including the UN Convention on the Rights of Persons with Disabilities and its Optional Protocol. Workshops included planning public advocacy back in participants countries, and undertaking strategic litigation as a key tool for effecting change for people with disabilities. Interactive sessions included a practical experience of monitoring a real institution for people with severe and multiple disabilities, interviewing people with intellectual disabilities and people with psycho-social disabilities, and mooting, in a mock court room. Research and advocacy in Africa Upon requests from various organisations in Africa, in 2009, MDAC decided to use some of its resources to investigate the human rights of people with psycho-social disabilities and people intellectual disabilities across the continent. The situation in Africa is different to MDACs traditional area of central and eastern Europe, but we learned that many of the solutions to the challenges were similar. African NGOs wanted us to help them with research and monitoring to issue reports about the situation there, they wanted to carry out advocacy, and they wanted to do strategic litigation. We worked hard to attract funds for to carry out work on the ground, starting with initial visits to engage partners in Kenya and Uganda during 2010. In 2011 we advised the Secretariat of the African Decade of Persons with Disabilities on a draft African Disability Protocol. We recommended pausing the drafting process to consult with and include disability experts in the working group on the rights of people with disabilities from the African Commission on Human and Peoples Rights. This proposal was accepted three new members joined the working group, including a person with disability, and the drafting process was on-going at the end of 2012. In August 2011, MDAC sent written comments to the Secretariat about another initiative, namely the development of anew continental plan of actionfor Africa, as aresult of the extension of the African Decade of Persons with Disabilities from 2009 to 2019. In September 2012 the Secretariat invited MDAC to provide comments on the draft Plan of Action, which we did, and the process was ongoing at year end. In January 2012, MDAC and Mental Health Worldwide supported local NGOs in Ghanaby urging the Ghanaian President to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD), and to pass the Mental Health Bill which had been sitting in Parliament for seven years. The Bill became law in March 2012 and the CRPD and its Optional Protocol were ratified in July 2012. Eighty percent of people with disabilities live in developing countries where people with disabilities are the poorest among the poor. Those with psycho-social or intellectual disabilities are among the most marginalised of all. Eyong Mbuen, MDAC Legal Officer In February 2012 we held atraining event for 12 practising lawyers from East Africa(Kenya, Tanzaniaand Uganda) in Kampala, Uganda. The theme of the training was on using the CRPD to represent people with disabilities in cases involving the rights to liberty and freedom from ill-treatment and the right to vote. For many of the participants this was the first time they developed strategies about how to use the CRPD in domestic courts. In the same month, we participated in aregional consultation for Africain Addis Ababa, Ethiopia, on preventing torture and protecting victims of torture. Our suggestions included arecommendation that laws about detention on the basis of adisability should be reviewed against CRPD standards, and this was included in the outcome document of the forum. MDAC contributed to building the capacity of several African organisations of people with psycho-social disabilities and people with intellectual disabilities addressing the right to legal capacity and the challenges to implementation in Africa. In March 2011 delivered training in Johannesburg, South Africa, at the Inclusion International and Inclusion Africaannual regional forum, which was attended by representatives of organisations from 13 African countries. In October 2011 we participated in aworkshop organised by the Pan-African Network of People with Psycho-Social Disabilities, which attracted member organisations from seven African countries. Kenya Through 2011 and 2012, MDAC hired researchers to gather evidence on decision-making for people with intellectual disabilities and people with psycho-social disabilities. We reviewed laws, and held interviews with people with disabilities and their families. The purpose was to issue areport to inform the on-going process of legal capacity law reform. Zambia In collaboration with local NGOs, we investigated the intersection between human rights, traditional healing and psycho-social disabilities. The purpose was to find out the extent of ill-treatment and abuse, and to identify ways in which ill-treatment in healthcare settings and in the community could be ended. Vialocal monitors we conducted over 80 interviews across Zambia, and visited traditional healing centres and mental health facilities. South Africa In collaboration with the University of Seattle, we welcomed law graduate AnupaIyer as aFellow for one year from September 2011. She led an exploratory investigation into violence and abuse against women with intellectual disabilities in the Western Cape, South Africa. Save the Vote The problem Its ashocking fact that people with intellectual disabilities and people with psycho-social disabilities, and those deemed mad, are denied their right to vote and stand for election in many countries. The Venice Commission, an influential constitutional law body affiliated to the Council of Europe, adopted adocument in October 2010 recommending that parliaments put in place legislation to allow judges to remove the right to vote of aperson with disability if the person lacks proper judgment. MDAC coordinated acampaign to reverse this outright discrimination. With the European Disability Forum, MDAC organised apublic discussion on 15 June 2011, in Venice, Italy, to scrutinise the legality and feasibility of the Commissions proposal. The next day, participants at the public discussion, along with Human Rights Watch, the International Disability Alliance and arange of other international non-governmental organisations issued astatement, which was distributed to members of the Venice Commission. Online campaign Worldwide, women and others have fought prejudices to secure their right to vote. If their struggle for universal suffrage tells us one thing, it is that we should count the vote of every person rather than exclude those belonging to acertain group. What hangs in the balance in this room is nothing smaller than the promise of democracy. Oliver Lewis, MDACs Executive Director, addressing a plenary session of the Venice Commission, 16 June 2011 Acampaign website www.savethevote.info went live right before the official launch event in New York on 8 September 2011, at the annual gathering on disability rights at the United Nations. The website contained campaign information and encouraged readers to take action by signing petitions, sending emails to the Venice Commission, and meeting members directly. UN Convention on the Rights of Persons with Disabilities Article 29 Participation in political and public life States Parties shall guarantee to persons with disabilities political rights and the opportunity to enjoy them on an equal basis with others, and shall undertake to (a) Ensure that persons with disabilities can effectively and fully participate in political and public life on an equal basis with others, directly or through freely chosen representatives, including the right and opportunity for persons with disabilities to vote and be elected. Offline campaign MDAC carried out several actions at the international level urging the Venice Commission to reverse the decision To get the issue on the agenda, we attended meetings at the UN Conference of States Parties to the CRPD in New York and briefed members of the UN Committee on the Rights of Persons with Disabilities in Geneva. briefed diplomats in Budapest urging them to contact their Venice Commission members intervened at the Organization for Security and Cooperation in Europe in Warsaw, with the European Disability Forum held aroundtable at the European Parliament in Brussels under the patronage of Andrew Duff MEP, and as aresult he initiated aWritten Declaration for the European Parliament calling on Member States to remove all legal limitations to the right of persons with disabilities to exercise their basic civic rights took our campaign to the Parliamentary Assembly of the Council of Europe in Strasbourg, and held an event with the UK member of the Venice Commission in London. Legal capacity MDAC was central in bringing to international attention one of the most acute human rights abuses in Europe today guardianship. We have researched, campaigned, litigated and advocated for over adecade on this issue, spearheading achange in rhetoric and law in many countries. Currently MDAC is engaged in providing technical assistance in eleven European jurisdictions undertaking law reform. Guardianship is akin to civil death, which strips aperson of their autonomy and dignity. As aresult, people with intellectual disabilities and people with psycho-social disabilities are denied the right to work (plunging already poor people into greater poverty), the right to marry, the right to decide on medical treatment, and crucially, the right to vote and stand for election akey element of democracy and European values. The implications of MDACs efforts are felt not just in Europe but around the world. At aglobal level, Inclusion International has greatly benefited from MDACs legal expertise and human rights approach to disability issues. Our members are able to draw on MDAC to help shape litigation strategies and policy advocacy. We use MDACs efforts and accomplishments as examples of success and build on these efforts to make change in countries globally. Connie Laurin-Bowie, Executive Director,Inclusion International In 2011-12 MDAC placed ahigh priority on providing policy and decision-makers and civil society organisations with knowledge on the right to legal capacity by organising capacity-building events. These events enabled people with disabilities and NGOs to find out new information and also to learn new advocacy skills to demand law reform. During this time MDAC organised and presented training events in Bulgaria, Czech Republic, Hungary, Latvia, Lithuania, Moldova, Portugal and the UK. We also trained judges from around Europe by acting as experts for the Academy of European Law in Trier, Germany. These Capacity-building activities enabled MDAC to address the meaning of Article 12 of the Convention on the Rights of Persons with Disabilities (CRPD), on the difference between aguardian and asupport person, and on what sorts of safeguards should exist. MDAC facilitated information exchange on promising approaches to implementing the UN Disability Convention, on ways of introducing supported decision-making and how to abolish substituted decision-making regimes. Guardianship is akin to civil death, stripping a person of their autonomy and dignity In 2011 and 2012 the Czech Republic, Latviaand Russiacompleted law reform. The Czech Republic abolished plenary guardianship and introduced alternatives including supported decision-making. Latviamanaged to abolish plenary guardianship, but failed to introduce supported decision-making. Russiaintroduced partial guardianship into law but did not abolish plenary guardianship or introduce alternatives to guardianship. MDAC urged international human rights mechanisms to push governments to reform their legal capacity systems. We took part in several sessions of the UN Committee on the Rights of Persons with Disabilities in Genevaand provided the Committee with information on the right to legal capacity for their periodic reviews of Spain (2011) and Hungary (2012). In both cases, the Committees concluding observations reflected MDACs submissions. These recommendations were used in our Hungarian advocacy work. With domestic NGOs we sent submissions addressing the right to legal capacity to the UN Human Rights Committee when it examined compliance the compliance of several with the International Covenant on Civil and Political Rights including Bosniaand Herzegovina, Bulgaria, Czech Republic, Lithuania, Portugal and Slovakia. In sum, legal capacity law and policy reforms are on the agendaacross Europe but the necessary legislative and policy steps to comply with the CRPD still lack clarity. There is ahuge need for information on advancing this crucial right for persons with intellectual disabilities and persons with psycho-social disabilities, including involving them in reform processes. Preventing torture Bringing disability torture to the worlds attention In November MDAC participated in the Global OPCAT Forum organised by the Association for the Prevention of Torture. MDACs Executive Director presented on apanel with Juan Mndez, UN Special Rapporteur on Torture, and highlighted the need for inspectorates to be more inclusive with regards to the variety of detention settings visited, and to involve users and survivors of mental health services who are experts by experience, as human rights monitors. In December, MDAC participated in the Regional Consultation for Europe on Prevention of Torture and Protection of Victims of Torture Especially Persons Deprived of their Liberty at the United Nations in Geneva. MDAC made anumber of interventions and pointed out that the UN Convention on the Rights of Persons with Disabilities should be respected in all places of detention. Convening action on detention and torture In November we brought together several experts in Strasbourg for aroundtable discussion on Evolving Standards in Preventing Torture and Ill-treatment against Persons withDisabilities. People working for UN and European bodies, as well as NGOs and academics took part. The objective was to increase cooperation among the participants, to underscore the importance of regular, independent and effective visits to psychiatric and social care institutions, and to discuss evolving international standards. The event was held jointly with the Human Rights Implementation Centre at the University of Bristol and the Centre for Disability Law and Policy at the NUIGalway School of Law, Ireland. Results were published in the International Journal of Human Rights in August 2012. As amember of the Committee on the Prevention of Torture Ibecame familiar with the work of the MDAC and its effects, and Ihave worked and collaborated with their staff, including work that has not been made public. The paths of MDAC and the CPT have crossed on several occasions, and when aCPT delegation has followed in the wake of the MDAC, Ihave seen with my own eyes the results of their work, not merely as regards policy, legislation and judicial practice, but even more importantly, achange of attitudes, observed on the spot in the homes visited. Astubborn paternalistic approach, with impunity for any ill-treatment, has been seen to develop towards arespectful approach, with proper individualised care. This is amajor achievement, no small feat. Ptur Hauksson (Icelandic Psychiatrist, and Member of the European Committee for the Prevention of Torture, 2000-2011) The result On 19 December 2011, following mounting pressure from the campaign, the Venice Commission amended its advice to governments. Universal suffrage is afundamental principle of the European Electoral Heritage. People with disabilities may not be discriminated against in this regard, in conformity with Article 29 of the Convention of the United Nations on the Rights of Persons with Disabilities and the case law of the European Court of Human Rights. Finances Besides core funding from the Open Society Foundations, MDAC is grateful to have received donations from avariety of trusts and foundations including the Sigrid Rausing Trust, Zennstrm Philanthropies, and the Trust for Civil Society in Central and Eastern Europe. In addition, MDAC received funds for its research from the EU Public Health Agency, the UK Foreign and Commonwealth Office, the Seattle University School of Law, the European Union Agency for Fundamental Rights (viathe European Human Consultancy) and the Dutch Embassy in Budapest. In December 2011 MDAC became apublic benefit organisation under Hungarian law, therefore apublic benefit report according to Hungarian requirements and an IFRS financial report are also produced each year. In 2012, anew financial system was introduced which enabled MDAC to modernise and restructure its budgeting and accounting procedures. Open Society Foundations as founder of MDAC conducted athorough audit and put the organisation to the top of the list of grantees regarding financial accountability. Due to the weakening of the Hungarian forint towards the last quarter of the year, MDAC was able to make acertain profit on currency transactions, resulting in asmall surplus by the end of the year. The same fluctuation resulted in financial loss at the end of 2012. Transparency and accountability are essential components for advancing human rights. We are committed to exemplifying the highest standards within our own governance structure  MDAC people, 2011-12 Board of Trustees Peter Bartlett (Chair until March 2011), Felicity Callard (Chair from March 2011), Gbor Liener (Treasurer), Robert Kushen (Secretary), Michael Bach, Ivan Fier, AnnaLawson MDAC-UK Trustees Samuel Coote (Chair), Andreas Rindler (Treasurer), Fiona Fraser (Secretary), Ivan Fier, Jennifer Randall Staff Kiry NomiAmbrus Fundraising Development Manager until February 2012 NgilaBevan Project Manager UN Litigation and Advocacy Manager until February 2012 gnes Csszr Programmes Assistant until July 2012 Eszter Csillry Financial and Executive Assistant until April 2011 SlavicaCubric Legal Officer from March until July 2012 IbolyaFabula Finance Officer until March 2011 Gbor Gombos Senior Advocacy Officer until December 2011 Sndor Gurbai Project Manager Legal Capacity Gbor Halmai Advocacy Officer Iqtadar Hasnain Fundraising Development Manager from June 2012 AnnaHornyik Finance Assistant from April 2011 Lajos Labossa Legal and Communications Assistant Oliver Lewis Executive Director ReimaAnaMaglajlic Research and Monitoring Director from September 2011 Eyong Mbuen Legal Officer BettiNagy Finance and Administration Director from April 2011 Lycette Nelson Litigation Director NatliaSimon Receptionist until December 2011 AndreaSpitlszky Legal Officer OrsolyaSveg Cleaner until March 2012 Kathryn Vandever Policy and Advocacy Officer until March 2011 NraVarga Cleaner from July 2012 Partner NGOs and lawyers MDAC works with awide array of partner organisations to achieve our joint goals. We also work with individual lawyers in various countries. Legal Monitors DmitriBartenev (Senior Legal Monitor Russia), ZuzanaDurajova(Legal Monitor Czech Republic), AnetaGenova(Legal Monitor Bulgaria), Maros Matiasko (Legal Monitor Slovakia), BarboraRittichova (Legal Monitor Czech Republic) Global partners Amnesty International, Association for the Prevention of Torture , Center for Reproductive Rights, Disability Rights International, Human Rights Watch, Inclusion International, International Disability Alliance, International Federation of ACAT, International Rehabilitation Council for Torture Victims, Open Society Foundations Human Rights Initiative, Open Society Foundations Public Health Program, Open Society Justice Initiative , Penal Reform International, World Network of Users and Survivors of Psychiatry Regional partners European Disability Forum, European Network of (ex-)Users and Survivors of Psychiatry, European Roma Rights Center, Human European Consultancy, Human Rights Student Initiative of the Central European University, Inclusion Europe, Mental Health Europe, Pan-African Network of People with Psycho-social Disabilities National partners Bulgaria Bulgarian Center for Not-For-Profit Law, Bulgarian Helsinki Committee Croatia Disability Ombudsman of Croatia, The SHINE Czech Republic Czech National Disability Council, Kolumbus, Instand, League of Human Rights, Public Defender of Rights (Ombudsman), QUIP Association for Change, SPMP/Inclusion Estonia Chancellor of Justice, Estonian Patient Advocacy Association Hungary Awakenings Foundation, Hungarian Association for Persons with Intellectual Disability (FOSZ), Hungarian Association of the Deaf and Hard of Hearing (SINOSZ), Hungarian Civil Liberties Union, Hungarian Helsinki Committee, Mental Health Interest Forum (PF), National Council of Disabled Peoples Organisations (FESZT), National Federation of Disabled Peoples Associations (MEOSZ), Office of the Commissioner for Fundamental Rights, The Hungarian Autistic Society, Voice of Soul Association Ireland Amnesty International Ireland Kenya The Kenyan Section of the International Commission of Jurists (ICJ Kenya) Kosovo Kosova Rehabilitation Centre for Torture Victims Latvia Resource Center for People with Mental Disability ZELDA Lithuania Global Initiative on Psychiatry, Human Rights Monitoring Institute Moldova UNDP Moldova, UN Resident Coordinator in Moldova Poland Helsinki Federation of Human Rights, Polish Association for People with Intellectual Disabilities Romania Center for Legal Resources Russia Independent Psychiatric Association of Russia, Perspektiva Slovakia Association for support of people with intellectual disabilities (ZPMP) Spain Spanish Committee of Representatives of Persons with Disabilities Uganda Mental Health Uganda United Kingdom Doughty Street Chambers, Mencap Northern Ireland Ukraine All-Ukrainian NGO Coalition for Persons with Intellectual Disability Zambia Mental Health Users Network of Zambia Academic partners Central European University, Centre for Disability Law and Policy – NUI Galway, Faculty of Social Work, University of Ljubljana, Institute of Psychiatry – Kings College London, University of Bristol Human Rights Implementation Centre Consultants Peter Bartlett, Jerome Bickenbach, Norbert Bognr, Zsfia Dek, Gavin Garman, Rob Gordon, Maths Jesperson, Ptur Hauksson, Mat Kinton, Stephen Klein, Allen Miligan, Anna Nilsson, Gerard Quinn, Jasna Russo, Richard Ruston, Mikls Sndor, Jolijn Santegoeds, Kay Sheldon, Rose Sibley, va Szeli Interns and volunteers MDAC is grateful to the following people who gave MDAC several months of their valuable time for free. 2011 Steven Allen, JoanaAlves, Helen Blaber, Brian Bwesigye, KaterynaDronova, AlexandraDubova, Sarah French, OanaGirlescu, Brandon Golob, Esther Kamau, AnnaMarupova, Sophie Pach, KrisztinaPalko, ArunsiriRuengpetch-Yarlett, Tesfahun Terrefe The challenges faced by people with disabilities back home in Kenya are huge. 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