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Newsletter

No. 2, February 2010



Table of Contents

Welcome

The year ahead ...................................................................................................................................................3

Before the courts

ECHR news: European Court of Human Rights hears first case by institutionalised resident of social care institution ..................................................................................................................................4

ECHR news: Amicus brief on rights violations arising out of institutionalisation and deprivationof legal capacity .........................................................................................................................................7

Bulgaria: Doychin has waited too long..................................................................................................................9

Bulgaria: The right to education for children with disabilities: moving in the right direction? ....................................13

Czech Republic: Constitutional Court finds deprivation of legal capacity “constitutionally problematic” ...................16

Estonia: Tallinn Circuit Court takes a stance against deprivation of legal capacity ..................................................19

United States: Litigating institutionalisation: Interview with Ira Burnim, Legal Director of the BazelonCenter for Mental Health Law ...................................................................................................................22

Policy and Advocacy

UN: Russia must reform legal capacity laws ........................................................................................................25

UN: Committee on the Rights of Persons with Disabilities “Day of general discussion” on legal capacity .................28

Africa: Implementing the UN Convention on the Rights of Persons with Disabilities: opportunities and challenges ....32

Czech Republic: Legal capacity from the Czech and European perspective ...........................................................38

WHO : Bet ter health for better lives.....................................................................................................................40

European Union: Fundamental Rights Agency starts to address rights of persons with mental health problemsand intellectual disabilities ........................................................................................................................42

Hungary: Overcoming obstacles to implementation ............................................................................................43

Projects

Russia: First session on human rights and guardianship in Russia hosted by mental health professionals ..................46

People

Gábor Gombos honoured .................................................................................................................................47

MDAC people ..................................................................................................................................................48



The year ahead

2010 promises to be MDAC’s busiest year so far. Together with our NGOpartners, we will continue our strategic litigation and advocacy work inBulgaria, the Czech Republic, Hungary, Russia and Estonia. This year,MDAC is stepping up our focus on implementing the UN Convention onthe Rights of Persons with Disabilities (CRPD). A project funded by theUK Government will start in April 2010 to research how governments inEurope are setting up independent bodies to monitor the implementationof the CRPD. In addition, funding from the Zennström Philanthropieswill enable us to deepen our focus on legal capacity, one of the keyissues of the CRPD. Zennström Philanthropies is also supporting a newproject on assessing the ways in which inspectorates are monitoring

mental health and social care institutions, and MDAC will be able toassist them to strengthen their competencies in this area.

We are also developing an educational training package on key CRPD issues which we will use to developthe advocacy skills and technical knowledge of civil society organisations. We also have some additionalfunding from the Open Society Institute to develop the capacity of litigators taking cases under the OptionalProtocol to the CRPD, as well as to attend the sessions of the UN Committee on the Rights of Persons withDisabilities. Furthermore, we are developing our Africa programming. The projects, focusing on legalcapacity and democratic participation rights, are being developed in conjunction with local NGOs andother experts. We will keep you posted about these project developments. Please contact us if you’d likeany more information, and please become a fan on our Facebook page.

Best wishes,

Oliver LewisExecutive Director

welcome

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Mental Disability Advocacy Center (MDAC) • Budapest, HungaryTel: +36 1 413 27 30 • Fax: +36 1 413 27 39 • Email: [email protected] • Website: www.mdac.info

http://www.mdac.info/en/implementing-un-convention-rights-persons-disabili

http://www.facebook.com/group.php?v=wall&viewas=0&ref=share&gid=4912386101

http://www.facebook.com/group.php?v=wall&viewas=0&ref=share&gid=4912386101

http://www.mdac.info/en/implementing-un-convention-rights-persons-disabili



ECHR news

European Court of Human Rights hears first caseby institutionalised resident of social care institution

Brought jointly by the Mental Disability Advocacy Center (MDAC) and itspartner organisation, the Bulgarian Helsinki Committee, the two casesbefore the European Court of Human Rights, Stanev v. Bulgaria and Mitev v. Bulgaria, are the first cases to be considered by the Court concerningallegations of human rights violations arising from deprivation of legalcapacity and confinement in a social care institution.

The two applicants have entirely separate cases but there arecommonalities which allowed the Court to hear the cases together.Both applicants were involuntarily deprived of their legal capacityon the basis of psychiatric diagnoses, in proceedings initiated bytheir respective relatives, and subsequently placed into social care

institutions without the applicants’ consent. Mr Mitev was confinedin the Pravda Home for Adults with Mental Disorders, a remotely

located and dilapidated institution, for five and a half years until he died inSeptember 2008. Mr Stanev has been detained in the Pastra Home for Adults

with Mental Disorders, an institution whose living conditions have been deemedto amount to inhuman and degrading treatment by the European Committee for the Prevention of Torture,for seven years and still counting. Given the continuing nature of the violations, a request was made in both

cases to obtain priority treatment before the Cour t, requests which were granted. At the joint hearing on 10 November 2009, MDAC lawyers made the following arguments on behalf of theapplicants:

• The applicants were deprived of their liberty by being forcibly placed into social care institutions onthe request of their respective guardians. They have never consented to their detention, and at nostage have the applicants been able to enjoy the basic safeguards against arbitrary deprivation of liberty, which are provided in Bulgarian law and the European Convention on Human Rights (ECHR,

Articles 5(1), 5(4), 5(5)).

• Neither have they been able to access a court in order to have the deprivation of legal capacityreviewed despite numerous efforts involving the Municipality and the Prosecutor’s Office. Given

that mental ill health fluctuates, automatic or regular reviews should be guaranteed under the lawto ensure that disproportionate measures do not continue unnecessarily (Article 6 of the ECHR).

• Due to the deprivation of legal capacity of the applicants and their detention in institutions, theyhave been denied their right to make the most basic choices including determining where theylive and with whom, their capacity to work, to form relationships, to par ticipate in community life,the list goes on – all of which directly infringe their individual right to personal development andright to establish and maintain relations with other human beings and the outside world (Article8 of the ECHR).

• Both applicants have been subjected to prison-like regimes in the institutions where they areconfined. They have no privacy, are not permitted to have personal possessions, and the

Rusi Stanev, resident of PastraHome for Adults with MentalDisorders

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before the courts

http://www.bghelsinki.org/index.php?lg=en

http://www.echr.coe.int/ECHR/FR/Header/Pending+Cases/Pending+cases/Calendar+of+scheduled+hearings/



http://www.nytimes.com/2009/01/05/world/europe/05bulgaria.html?_r=2

http://www.cpt.coe.int/documents/bgr/2004-23-inf-eng.htm

http://cmiskp.echr.coe.int/tkp197/view.asp?item=1&portal=hbkm&action=html&highlight=stanev&sessionid=40646566&skin=hudoc-pr-en

http://cmiskp.echr.coe.int/tkp197/view.asp?item=1&portal=hbkm&action=html&highlight=stanev&sessionid=40646566&skin=hudoc-pr-en

http://www.cpt.coe.int/documents/bgr/2004-23-inf-eng.htm

http://www.nytimes.com/2009/01/05/world/europe/05bulgaria.html?_r=2







n e w s l e t t e r 2 before the courts

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environment and effects of institutionalisation are conducive to them losing their individualityaltogether (Articles 3 and 8 of the ECHR). In par ticular, the government had given undertakings to

close the Pastra institution several years ago due to its unsuitability for human habitation, however it remains operational today.

• Without their legal capacity, Mr Stanev and Mr Mitev have been denied the means to an effectiveremedy regarding all of the mentioned violations of their rights enshrined in Articles 3, 5, 6, and 8of the ECHR (Article 13 of the ECHR).

At the hearing, the Bulgarian government relied on their initial defence that the applications were manifestlyill-founded and should therefore be deemed inadmissible. They argued that the applicants were not deprivedof their liberty by being placed into the social care institutions, but that their placements were carried out ona contractual basis with the consent of their respective guardians and that they were not detained under themental health law. They claimed that neither applicant was eligible for a review of their legal capacity because,

since their incapacity proceedings, their mental health statuses had remained unchanged. Furthermore, theystated that neither applicant had a place to live outside of the institutions and thus being in the social careinstitutions was in their best interests. The applicants strongly contested these assertions.

These cases illustrate the precarious situation of institutionalised persons deprived of their legal capacity. Theyexperience a complete loss of their rights, amounting to their “civil death”, including the right to seek remedies.The cases illustrate the contradictions and abuse of guardianship systems which permit arbitrary and indefinitedetention, in the form of institutionalisation, without any form of scrutiny by the courts and which is deemed tobe “voluntary” because the guardian has consented to it.

The cases further highlight the defects of guardianship systems which allow guardian appointments to estrangedfamily members who want to socially exclude their relatives, or directors of the very social care institutions inwhich the person under guardianship has been detained: both scenarios result in a manifest conflict of interest.Whilst Bulgarian law purports to prohibit people from being guardians if their interests contradict with thoseof the person concerned, there is no mechanism with which to judge or enforce this criteria. Furthermore, thecases highlight the harmful effects of institutionalisation including the loss of social skills due to the absence of any form of rehabilitation or therapy directed at returning to community settings.

It should be mentioned that the European Court of Human Rights rarely holds hearings. In 2008, there were28 hearings (involving 31 cases) before the Court, whilst 1,881 judgments were delivered out of a total 32,045applications processed. In 2009, 25 hearings took place before the Court involving 36 applications. In Mr Stanev’s case, a special request was made for a hearing which was subsequently granted by the President of theCourt. It was argued that the Court had not previously treated issues specifically concerning indefinite detentionand institutionalisation of people with mental disabilities in social care institutions. Given the widespread practiceof such institutionalisation in many parts of Europe, there is a pressing need to interpret whether ECHR provisions

also apply in the social care context to ensure respect for an individual’s liberty and security.

Similarly, the violation of rights which arise from guardianship measures has only been partially considered bythe Court, which has not had the opportunity to comment on the lack of safeguards in guardianship regimesor on practices which infringe the protective purpose of guardianship itself. The applicants argued in their submissions that the European Court of Human Rights is the only judicial body before which Mr Stanev haslegal standing, because his status under partial guardianship denies him access to Bulgarian courts. In theapplicant’s eyes, participation in a hearing before the Court was the concrete manifestation of the individualright of petition, which is the cornerstone of the European Convention on Human Rights.

Mr Stanev’s participation before the European Court was the first time in the history of the Court that a residentof a social care institution was an applicant in a case before it. More impor tantly, attendance at his own hearing




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at Europe’s highest human rights court was inexpressibly meaningfulfor Mr Stanev. It was the first time that Mr Stanev had left Bulgaria, and

the first time in seven years that he left the immediate surroundingsof the institution where he is confined. It must be stressed though,that gaining permission from the guardianship office of the localmunicipality for Mr Stanev to attend his own court hearing wasno simple task. His lawyer struggled with the municipality untildays before the hearing to ensure that Mr Stanev was allowedto travel to Strasbourg. The guardianship authority had evengone to the lengths of obtaining a medical expertise whichadvised against Mr Stanev’s travel and attendance at his ownhearing on the basis of his fragile mental health. Such effortsto obstruct his attendance were fortunately overcome andwere proved to be erroneously based. During the few days

spent in Strasbourg, Mr Stanev progressively opened up andthrived in his environment back in the community. One cannothelp but ponder how naturally he would flourish by a return to community

living, for good. Mr Stanev wishes to return to life in the community and hopes totake steps in this direction should the European Court award him compensation for the human

rights violations he has suffered.

MDAC does not yet know when the European Court of Human Rights will issue its judgments in these cases,and will alert its network at the earliest opportunity. The Court’s webcast of the hearing can be viewed here.To read more about Mr Stanev and other institutionalised residents in Bulgaria and the region, read thejournalistic investigation entitled “Dumping Grounds for People” by Yana Buhrer Tavanier which is availableon-line at http://dumpinggroundsforpeople.wordpress.com/.

MDAC’s work in Bulgaria is supported by a grant from the Trust for Civil Society in Central and EasternEurope, a grant from the Open Society Institute–Budapest, and a grant from MDAC-UK.

http://www.echr.coe.int/ECHR/EN/Header/Press/Multimedia/Webcasts+of+public+hearings/webcastEN_media?&p_url=20091110-1/en/

http://dumpinggroundsforpeople.wordpress.com/


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In its Kedzior amicus, MDAC argued that the legal capacity laws which do not allow for a tailor-madeapproach to an individual’s needs and aspirations, fail to provide protection, and rather facilitate abuse,

neglect and exclusion of persons subject to the measure. Such guardianship systems have been supersededby a new paradigm introduced by the UN Convention on the Rights of Persons with Disabilities and therecognition of universal legal capacity as a prerequisite for the full participation in society on an equalbasis with others. Furthermore, it was argued that a finding of incapacity does not negate a person’s rightto liberty or to independent living. It is essential for European Convention purposes, that a mental capacityassessment is not mistaken for, or conflated into, an assessment for the purposes of detaining someone ina mental health institution.

The amicus argued that objective medical evidence of the existence of a mental health diagnosis does notestablish functional incapacity nor can it form the basis of detention. Moreover, Article 5(4) of the ECHRrequires that a court examine the lawfulness of detention measures, and that by virtue of the position of inferiority and powerlessness which is typical of patients confined in such situations, increased vigilance is

required of States. This requirement imposes upon States a number of positive obligations in relation todetainees whose capacity is impaired, including a system of periodic and automatic review of detention bya court, accessibility of court proceedings to detained persons, and the implementation of the principle of “reasonable accommodation” as defined in the CRPD, to ensure that obstacles are removed which wouldotherwise make it particularly difficult for a person with disabilities to access and enjoy rights on an equalbasis with others. This also applies to exercising the right to a fair trial. Being excluded from participating inone’s guardianship proceedings, denied the opportunity to present and challenge evidence, and to be heardin person or by a legal representative infringes upon the rights enshrined in Article 6 of the ECHR.

Deprivation of legal capacity results in removing one’s autonomy and decision-making power and willinvariably constitutes an interference with that person’s private life and may amount to an interference with hisor her family life, home and correspondence. Article 8(1) of the ECHR places significant positive obligationson States to secure for such persons – to the maximum extent possible – effective respect for their integrity. Theamicus argued that measures which strip individuals of all decision-making powers serve no legitimate aimand are not proportionate, thereby breaching Article 8 of the ECHR. In addition, confinement in a social careinstitution against an individual’s will must be regarded as an interference with the right to respect for privatelife under Article 8 and the right to liberty of movement and freedom to choose one’s place of residence under

Article 2 of Protocol No. 4 to the ECHR.

Click here to read the third party intervention. Click here to read a Polish translation of the intervention, kindlyprovided by the Polish NGO the Helsinki Foundation for Human Rights, an organisation which is representingthe applicant before the European litigation.

MDAC’s strategic litigation is supported by grants from the Open Society Institute–Budapest,

and by the Sigrid Rausing Trust.

http://www.mdac.info/en/webfm_send/17

http://www.hfhr.org.pl/precedens/aktualnosci/mental-disability-advocacy-center-mdac-zlozylo-opinie-przyjaciela-sadu-w-sprawie-kedzior-przeciwko-polsce.html

http://www.hfhr.org.pl/precedens/aktualnosci/mental-disability-advocacy-center-mdac-zlozylo-opinie-przyjaciela-sadu-w-sprawie-kedzior-przeciwko-polsce.html





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Bulgaria

Doychin has waited too long

By Yana Buhrer Tavanier*

If on a sunny autumn af ternoon you happen to walk around Ovcha Kupel, oneof the suburbs of Bulgaria’s capital Sofia, you could meet Doychin.

When the weather is nice, he goes out, buys a cola with the money hisparents have given him, and engages in conversations with the youngpeople on the street.

The people in the neighbourhood know him and are not abusive, but theyare not particularly friendly either. However, if Doychin walks the streetsin the centre of Sofia, people move aside, away from him, as if he werevery, very dangerous.

Doychin considers everyone who says “hi” to him to be a true friend, and isready to do whatever someone tells him so they can have a laugh together.

Sometimes people film Doychin doing whatever ridiculous things they makehim say or do, and the derogatory footage is uploaded and shared on the

internet, for the fun of everyone.

When the weather is not that great, Doychin stays at home, sitting behind the computer or in front of theTV, and, out of sheer boredom, constantly eating. As a result, he weighs 140 kg even if he is of normalheight – “we simply can’t stop him from eating”, says his mother, Tatyana Bineva.

This is what days’, months’ life looks like for a 21 year old with an intellectual disability living in Bulgariansociety.

Doychin is labelled as ‘100% disabled’, and has no right to work, to get any sor t of job, anywhere. “We thinkthat our son could be very good at simple jobs, but if an employer decides to hire him, that must be doneillegally”, says Tatyana Bineva. The paradox is that Doychin has a vocational qualification diploma as an

upholsterer delivered by the special school from which he graduated – a certificate he can never use givenhis official label as unable to work.

Doychin cannot read or write with ease. His parents tried to place him in a public school when he waseight, but he was immediately transferred to a special one, where he stayed until the 8th grade. “Doychinstarted to learn how to read and write in the last years of his schooling, that’s when learning becameeasier for him, and he star ted showing an interest in school. But, according to the norms of the BulgarianMinistry of Education, the state should provide education to all children till 16 years of age, no matter what their specific needs and stage of development might be”, Tatyana explains. “Doychin is 21 now, buthis intellectual level is that of a child of 10-12 years old. Shouldn’t 10-12 year olds be at school?” sheasks rhetorically.

Doychin Binev, a Bulgariancitizen who was denied equaleducational opportunities




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Unlike for other children, the Bulgarian education system provides no opportunities for children and youngadults with intellectual disabilities to continue learning beyond their 16 years or upon completing the eighth

grade. Furthermore, unlike children in mainstream schools, children attending special schools are notpermitted to repeat a year. They are passed through the system without regard for reaching educationalstandards.

Strategic precedent

Tatyana Bineva is one of the parents of children with special educational needs who last year lodged acomplaint against the Ministry of Education with the Commission for the Protection against Discrimination,Bulgaria’s equality body which has powers to adjudicate in individual or collective cases, and whosedecisions are legally binding. The Bulgarian Helsinki Committee (BHC), an influential human rights NGO,took up this case as their legal representative within their joint project with MDAC.

“Our children do not have the opportunity to choose whether tostudy in a school of general education, or in a special school,whether to be integrated with the other kids with the necessarysupported environment, or to be isolated in special schools”,the parents wrote in their complaint to the Commission. Theyadded, “it’s a well known fact that the education of fered inspecial schools is not at the required level”. In fact, the statedecides for these children what they are going to study. For them, education is only vocational, and the professions arestrictly and concretely defined. And given the mandatoryage ceiling for kids in special schools, 16 years of age,after which their education is ceased, children withintellectual disabilities are clearly disadvantaged intheir educational opportunities.

In the beginning of November 2009, the Commision for the Protection against Discrimination concluded that the Minister of Education committed direct

discrimination, based on disability, by not undertaking special measures to ensure effectiveand equal access to education for children with special educational needs.

The Commission determined that the Minister:

• violated the International Covenant on Economic, Social and Cultural Rights, the Convention on theRights of the Child, and the European Social Charter;

• failed to implement the decision by the European Committee for Social Rights in MDAC V. Bulgaria case in which the Committee found Bulgaria in violation of Ar ticle 17 (right to education) and ArticleE (right to non-discrimination) of the Revised European Social Charter with respect to institutionalisedchildren with disabilities;

• has not undertaken special measures to equalise the opportunities for the adaptation and socialintegration of these children, in accordance with the special protection people with disabilities aredue by the Constitution.

The Commission found that children are subject to segregation and isolation in special schools, and thatthe Ministry has deprived them of a suppor ted environment in which their individual abilities are taken into

http://kzd-nondiscrimination.com/start/index.php?lang=en


http://www.mdac.info/en/node/171







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consideration, and an individual school plan is created accordingly. The education that these childrenhave received automatically puts them in an unequal position compared with the rest of the students, nor

does it guarantee further integration into social life. That is why the Commission for the Protection againstDiscrimination recommended that the Minister initiate legislative changes which guarantee appropriateand quality education for each child catered to their individual needs and abilities, and regardless of their age.

The Bulgarian Helsinki Committee and the Mental Disability Advocacy Center welcome this decision as astrategic precedent; it attacks key structural deficits of the education system and adopts a more inclusiveapproach.

“Society is not ready”

Eighty five percent. This is how many Bulgarians generally disapprove of inclusive education of children withintellectual disabilities and children with multiple disabilities. This is according to data from a 2007 sociological survey by Alfa Research conducted for Save the Children UK. At present, we have no evidence to believe thatthe situation has changed for the better. In the survey, the question was posed: “Which groups of childrenwith disabilities would you approve to be in your child’s class?” Just five percent accepted to have a child withmultiple disabilities in their child’s class, and only four percent could accept that a child with an intellectualdisability be taught with their own children.

When talking about inclusive education in Bulgaria, one can very of ten hear the excuse that “our society isnot ready”.

“Our society is not ready”, was repeated by some individuals in the beginning of November inSofia, when the Mental Disability Advocacy Center and the Bulgarian Helsinki Committee hosteda roundtable one year after Europe’s highest social rights body found that Bulgaria had violatedinternational law by discriminating against children with disabilities in not providing them with aneducation. On this occasion, MDAC and BHC issued a report that analyses progress one year on –according to which, out of eleven recommendations flowing from the judicial decision, the Bulgariangovernment has partially achieved only four, while it has failed to achieve the other seven.

Bulgarian society is not ready for many things. For the rights of people with disabilities. Gay couples.Immigrants. People living with HIV/AIDS. But is this a valid argument? Human rights cannot wait at thedoorstep for a society to get ready. Human rights are not a luxurious coat for the back of some societies,they are every society’s backbone.

“The outcome of this case will not directly affect Doychin. Our idea wasn’t to benefit personally.

In any case, for Doychin it is too late”, Tatyana Bineva says. “We started it out of sheer principle,because we couldn’t bear this situation anymore. We hope that this decision will help many other children in the future”.

Bulgaria’s Doychins have waited long enough. For some it is too late, but for others, future generations, thisdecision can make a world of difference.

*Yana Buhrer Tavanier is a freelance journalist from Sofia, Bulgaria. Previously, she was editor of ‘Social Issues’ of the Bulgarian weekly “Capital” (2003-2008). Yana is a representative of theBulgarian Activist Alliance – an informal group of activists, working in the human rights field. As afellow of the Balkan Fellowship for Journalistic Excellence in 2009, Yana investigated human rightsabuses and inhuman and degrading treatment in institutions for adults with intellectual disabilities or

http://cie-bg.eu/userfiles/file/Report_Qualitative_Final_BG.pdf







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mental illnesses in Bulgaria, Romania and Serbia, see http://dumpinggroundsforpeople.wordpress.com. In November 2009, this investigation was awarded with the third prize in the Balkan Awards

for Journalistic Excellence. On 1 December 2009, Yana joined the team of the Bulgarian HelsinkiCommittee as Campaign Manager.

MDAC’s work in Bulgaria is supported by a grant from the Trust for Civil Society in Central and Eastern

Europe, and a grant from the Open Society Institute–Budapest.








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Bulgaria

The right to education for children with disabilities:moving in the right direction?

Following on from the 2008 roundtable event on the decision of the Eu-ropean Committee of Social Rights (ECSR) against Bulgaria on inclusiveeducation, the roundtable event on 3 November 2009 in Sofia, Bulgaria,aimed to evaluate the progress of the Bulgarian government in imple-

menting the ECSR decision and making inclusive education a reality for children with disabilities.

The roundtable event was opened by Thomas Hammarberg, theCouncil of Europe Commissioner for Human Rights. The Commissioner highlighted that the right to education is a universal right as is theright to development and the right not to be discriminated against.

He expressed concern that governmental budgets with respect toeducation and health were being slashed due to the economic recession

to the detriment of children. He emphasised that the maximum possibleresources must be utilised for inclusive education despite economic hardship,

and that the term ‘inclusive education’ must be developed and understood to

ensure that society adjusts to the needs of the individual. A particular issue raised by the Commissioner was that there are low numbers of children with intellectualdisabilities in schools, and that those schools are not properly adapted to their needs; teaching materialshave not been adjusted and teachers have not been trained. This remains a major area of reform, hesaid, and the attitudes of politicians in Bulgaria need to change. The Commissioner highlighted thecrucial role of the media in fostering a positive attitude to children with disabilities, which is not currentlybeing fulfilled in Europe in any meaningful way. He expressed disappointment in this respect and statedhe would like to see the media living up to this challenge. Furthermore, the Commissioner declaredthat there needs to be a change of attitude in the schools themselves, and that there will be a positiveimpact on society when everybody is given the chance to attend school together. The Commissioner has strongly advocated for both children’s rights and disability rights in his mandate, and has publishedseveral viewpoints on these issues.

The morning session in Bulgaria’s capital focused on the launch of the Progress Report produced by MDACand its partner organisation, the Bulgarien Helsinki Committee (BHC). The Progress Report measuresthe Bulgarian government’s action taken against eleven recommendations created by MDAC and BHCin October 2008 following the ECSR’s decision in MDAC v. Bulgaria. The Committee found Bulgaria inviolation of Ar ticle 17 (right to education) and Ar ticle E (right to non-discrimination) of the Revised EuropeanSocial Charter with respect to institutionalised children with disabilities. The Progress Report shows thatout of the eleven recommendations, four have been partially implemented by the government and sevenhave not been implemented at all. Despite good intentions made publicly by Bulgarian governmentrepresentatives, little progress has actually been made. Of particular concern are:

Thomas Hammarberg,the Council of Europe

Commissioner for

Human Rights

http://www.mdac.info/images/page_image/2008-10-29_MDAC_roundtable_summary.pdf

http://www.coe.int/t/dghl/monitoring/socialcharter/ecsr/ecsrdefault_EN.asp


http://www.coe.int/t/commissioner/default_en.asp


http://www.coe.int/t/commissioner/Viewpoints/previous2009_en.asp

http://www.mdac.info/2009-11-17%20Progress%20report.pdf


http://www.mdac.info/images/page_image/MDAC_v_Bulgaria_summary_and_recommendations.pdf



http://www.mdac.info/images/page_image/MDAC_v_Bulgaria_summary_and_recommendations.pdf


http://www.mdac.info/2009-11-17%20Progress%20report.pdf

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• Children living in Homes for Mentally Disabled Children (HMDC) with medium or profoundintellectual disabilities continue to be discriminated against in their right to education by being

deprived of education in a mainstream school. Their only options remain attending specialschools or schooling within the HMDC.

• HMDC children are not allowed to repeat a school year and their schooling comes to a mandatoryend at Grade 8, compared with children in mainstream schools who are allowed to repeat a year if they need to and who have the opportunity to complete high school and continue to further studies. Thus, the law prescribes an inferior standard of education to this group of children andprovides no adjustments tailored to their individual learning needs with respect to the duration of their education.

• Allocation of resources and funding to schools and resource centres, including provision of teaching and educational materials, favours the integration of children with sensory or physical

disabilities in mainstream schools. Children with intellectual disabilities are still subject to resourceallocations which target their attendance in special schools, thereby denying them equal accessto mainstream schools.

Anely Chobanova, Member of the Commission for Protection against Discrimination, Bulgaria’s equalitybody, reported on a recent decision in a case which BHC brought on behalf of several mothers of children withintellectual disabilities, which found discrimination due to the lack of educational oppor tunities provided tothem. The Commission has submit ted recommendations to the government accordingly. Svetlana Lomeva,Deputy Minister of the Ministry of Labour and Social Policy spoke of the trend towards the closure of specialschools in order to put children into mainstream education. She accepted the need for data to be collectedin order to measure any progress made and assured roundtable participants that the government wasconsidering amending Regulation No 1/2009 which was a subject of much criticism in the MDAC and BHCProgress Report.

Ms Nadya Shabani, Chairperson of the State Agency for Child Protection, argued that amendmentswere not necessary, but rather that proper implementation of the legislation was imperative. Dr Krassimir Kanev commented on the data discrepancies between the two government officials, and they respondedby saying that there was as yet no unified information system, which they accepted was essential.

The afternoon session focused on the human aspect of inclusive education, with examples of the impactof lack of progress on this issue and discussion on how the government can move forward with its aims.Participants heard from one of the mothers who had taken the case against the Ministr y of Education toBulgaria’s equality body. Her son Doychin had access to education only up to the age of 16 years. Sincethen he has had trouble finding a job, and has stayed at home for the last two years. He is only ableto attend a day centre twice a week due to its limited capacity. There were also presentations from the

mother of an adopted Bulgarian girl who formerly resided in a children’s institution, and an internationalexpert on ‘early intervention’ for children with disabilities. Ingrig Körner , President of Inclusion Europe,insisted that every child should be included in mainstream schools, regardless of disability. She claimsthat diversity is the solution, not the problem, because diversity enriches schools and society as a whole.Unless there is full inclusion it cannot be defined as ‘inclusion’ at all. Iva Boneva, Director of the Centre for Inclusive Education, conveyed the importance of implementation of inclusive education and statedthat the team who works with the child must be properly trained and must identify the skills as well as thedeficiencies of the child.

As the event drew to a close, participants discussed what recommendations could be made to theBulgarian government concerning inclusive education, to ensure that newly-elected officials finally deliver


http://www.mdac.info/en/doychin-has-waited-too-long

http://www.sacp.government.bg/



http://www.inclusion-europe.org/


http://www.cie-bg.eu/cgi-bin/index.pl





http://www.inclusion-europe.org/



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on this issue. As one child was quoted in a presentation: ‘if we don’t all learn together, how shall we livetogether afterwards?’

To read a more comprehensive summary of the roundtable presentations and discussions, click here.

To view a video on inclusive education screened at the event, click here.

This event was supported by grants from the Trust for Civil Society in Central and Eastern Europe,the Open Society Institute–Budapest and MDAC-UK.


http://www.youtube.com/watch?v=JHE4Q8ABxSI

http://www.youtube.com/watch?v=JHE4Q8ABxSI





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Czech Republic

Constitutional Court finds deprivation of legal capacity “constitutionally problematic”

For the first time, the Constitutional Court of the Czech Republic expressed its concerns towards the processof deprivation of legal capacity and the placement of people under total or plenary guardianship. Accordingto the Court, this “constitutionally problematic” instrument is a “relic of the old regime” and is incompatiblewith the current democratic system on which the Czech Republic is based.

The case¹ which led to the Constitutional Cour t’s comments concerned a woman with a mild intellectualdisability who was deprived by a court of her legal capacity in 1982. Although she had functional capacityto carry out many daily tasks of a more complex nature, the courts repeatedly refused to restore her fulllegal capacity and she remained under plenary guardianship. In 2007, the courts partially restored her legal capacity, however only to the extent that she was permitted to independently handle a small amountof money.

On 18 August 2009, the Constitutional Cour t found that the decisions of the Supreme Court, Regional courtand District court violated the rights of the applicant guaranteed by Articles 5 (the right to be recognised asa person before the law) and 10/1 (the right to family and private life) of the Charter of Fundamental Rightsand Basic Freedoms, which forms part of the Czech Constitution.² In its reasoning, the Court emphasised

the importance of the principle of legality in the decisions taken by the authorities and concluded that theprevious courts did not act in accordance with the law. The Constitutional Court interpreted the constitutionalprovision that every person has the capacity to have rights to guarantee a legal personality for everyone,finding that the lower courts failed to provide logical and proportionate reasoning for denying the applicantof her legal capacity, and thus her legal personality. The decision withholding her legal capacity musttherefore, the Constitutional Court found, be considered unlawful.

The Constitutional Court criticised the fact that courts often fail to examine all the evidence relevant tolegal capacity cases. In this case, neither the individual whose legal capacity and fundamental rightswere at stake, nor her friends or relatives were heard. In one of its older decisions, the ConstitutionalCourt stated that it is general courts’ practice that decisions on legal capacity are virtually solelybased on expert opinions.³ MDAC and Liga recognise that expert opinions are not comprehensive;they are most often limited to examining a diagnosis and do not consider the functional capacity of theconcerned individual, nor their personal or family situations. In the present case, the courts made adetermination of the individual’s legal capacity only on the basis that she had an intellectual disability.

According to the Constitutional Court, a mental health problem or intellectual disability cannot be thesole criterion to justify the deprivation or limitation of legal capacity. The Court elaborated that in everyindividual case, the specific interest that is purpor ted to be protected by this limitation must be identified.When a person is able to fully function and participate in society without posing a threat to another constitutionally protected value, the courts cannot decide to limit their capacity solely on the groundsof illness or disability.




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Highlighting the obsolete nature of plenary guardianship, the Constitutional Court pointed out that themeasure has been abolished in Germany, Austria and France. Of great significance is the Constitutional

Court’s call directed at general courts: “Do not deprive people of their legal capacity!”, the judges say. Although, the Czech judiciary does not operate by the doctr ine of precedent (meaning that lower courts arenot legally bound to follow and apply a higher court’s decision), the lower courts nevertheless have a duty tofollow the Constitutional Court’s judgment owing to its profound moral and legal authority. This milestonejudgment demonstrates the increasing awareness among legal practitioners and academics that plenaryguardianship is a disproportionate measure which fails to serve a legitimate aim.

MDAC has repeatedly pointed out the flawed practice carr ied out by courts in assessment of legal capacity. According to statistics provided by Ministry of Interior on 9 November 2010, there are currently more than25,000 people under plenary guardianship and 4,500 people under partial guardianship in the CzechRepublic. The numbers indicate grossly disproportionate use between the two measures. Given that partialguardianship is less restrictive of one’s rights than plenary guardianship, one would expect the ratio to

be the reverse, assuming that the law and the courts consider the exercise of one’s rights to be the norm.However, in reality, the courts generally deprive people of legal capacity, as it is easier and more convenientto do so. Only rarely – in around 15% of cases according to statistics of the Ministry of Interior – do courtsopt for partial limitation of legal capacity.

Why? There are various reasons. The process of imposing a limitation of one’s capacity is a more intricateand time-consuming process; the courts must give precise definition of the scope of the limitations whichrequires assessment of an individual’s competencies in various spheres of life. This also means that theindividual must be heard by the court. This itself can pose several challenges for a cour t: judges are notoften at ease communicating with persons with disabilities and judges know that persons with disabilitieswould very likely oppose incapacitation proceedings.

Full deprivation of legal capacity has also become the normbecause there are currently no other options for the protection of the rights and interests of persons with mental health disabilitiesor intellectual disabilities, such as supported decision-making,and the courts assume that plenary guardianship will protect avulnerable person more effectively. Furthermore, a paternalisticapproach to persons with disabilities, dating from the earlytwentieth century,4 remains rooted in the Czech judiciaryand legal systems, which continue to objectify persons withdisabilities rather than acknowledging them and promotingthem as subjects of rights. For example, the Civil Code andCode of Civil Procedure in operation today were draftedand passed more than 40 years ago, and the outmoded

laws influence outmoded practices and societal attitudes.

The situation is, however, changing in the CzechRepublic. The country ratified the United Nations Convention

on the Rights of Persons with Disabilities in September 2009, and Ar ticle12 of that Convention is of direct relevance to the legal capacity law reforms. A

new Civil Code was drafted in 2009 and will likely be passed af ter the next general election.MDAC and its partner organisation, the League of Human Rights (Liga), have been leading the legal

capacity law reform advocacy, and the draft law has incorporated the shift of paradigm from substituteddecision-making, represented by the guardianship system, to supported decision-making. According tothe draft Civil Code, plenary guardianship will no longer feature in the Czech legal sys tem and the Code

http://www.llp.cz/en/









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will provide various alternatives for support to people with mental health disabilities and intellectualdisabilities, and people belonging to other so-called vulnerable groups.

MDAC’s work in the Czech Republic is supported by a grant from the Trust for Civil Society inCentral and Eastern Europe, and a grant from the Open Society Institute–Budapest.

ENDNOTES

1 The decision is available in Czech here.

2 Art. 5: “All people are free, have equal dignity, and enjoy equality of rights. Their fundamental rights and basicfreedoms are inherent, inalienable, non-prescriptible, and not subject to repeal.”

Art. 10(1): “Everyone has the right to demand that his human dignity, personal honour, and good reputation be

respected, and that his name be protected.”3 Decision of the Constitutional Court No. II.ÚS 2630/07 from 13 December 2007. The decision is available in

Czech here.

4 Til 1950, the Austrian Civil Code (ABGB) was in force in the Czech Republic (a remnant from the Austro-Hungarian empire). Back in 1916, we can find the first code on legal capacity which comprised mainly proceduralrules, but also established deprivation of legal capacity.

http://nalus.usoud.cz/Search/ResultDetail.aspx?id=63411&pos=1&cnt=1&typ=result







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Estonia

Tallinn Circuit Court takes a stance against deprivationof legal capacity

There has been an increased risk of persons being subjected to legal incapacity proceedings in Estonia giventhat first instance courts are legally obliged to check whether parties to civil proceedings possess proceduralcapacity, i.e. the capacity to take part in legal proceedings.

Since 1 January 2006,¹ a civil court may initiate a procedure to appoint a guardian to an individual who is aparty to a civil dispute in court when they are not, in the courts’ estimation, sufficiently capable to representthemselves in court.

In practice, this provision of the Estonian Code of Civil Procedure permit ting the appointment of a guardianby courts adjudicating over civil proceedings does not lead to greater protection of an individual’s interestsas a party in civil proceedings, contrary to its original intention. In most cases in which a person is appointeda legal guardian, it is their relative who is given this role; without any legal education or knowledge asconcerns court procedures, these appointed guardians are not trained to ensure that the adult’s interestswill be represented in the court proceedings. Rather than considering the use of a less restrictive measuresuch as proposing that the person has a state-paid legal representative, the provision requires courts tosystematically order a psychiatric assessment to determine the need for depriving the adult in question of

their legal capacity.These psychiatric assessments in practice determine whether a court will deprive the adult of their legalcapacity or not. However, the psychiatric assessments do not evaluate an understanding of legal proceedings,and the resulting reports do not meet the court’s initial concern, namely that the adult will be properlyrepresented in the civil proceedings.

Misguided application of this provision results in the restriction of a person’s procedural rights without reasonable justification. Theadditional time and resources expended to conduct legal capacityproceedings often outweigh the actual need when less restrictivemeasures or solutions can be easily implemented. Further, the extracosts of holding legal capacity proceedings are incorporated intothe original civil case. Of greatest significance however, is that adeprivation of legal capacity (and the resultant appointment of aguardian) reaches well beyond the civil proceedings, affectingthe adult in all personal, family and financial matters.

Some recent cases indicate that the use of this legal provisionresults in prolonged legal proceedings without legitimatecause:

Two years ago, a client withdrew a civil claim before theHarju County Court and informed the court about this action in writing.²




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As there was no communication from the court, she assumed that her case was closed. However, in July2009, two years after she had had any contact with the court, she received in the post a ruling stating

that the court had initiated a procedure to appoint her a guardian. The court ordered that she undergo apsychiatric assessment, an order which she complied with. The psychiatric report stated that the woman wasin a good state of mental health and reported that there were no grounds to refer this case to a psychiatrist.Eventually, another judge of the same court terminated this case in a written procedure stating that nogrounds existed to appoint her a guardian.

In another case before the Harju County Court two years ago,³ a man was a party in civil proceedingsabout debt payments and had agreed to a payment schedule with the other party. He had told the courtthat among the reasons for him being in debt was that he had suffered from depression. For two years after he made the agreement, the man diligently made his monthly payments and believed that the court casehad been terminated. In July 2009, he received a notification from the court that it had decided to initiatea procedure to appoint him a guardian. According to the psychiatric assessment which he underwent, he

was fully responsible for his actions and was evaluated as having competence to participate in the civilproceedings. Based on this assessment, an opinion submitted by the local government in his support, and awritten submission on his own behalf, the Harju County Court terminated the proceedings.

In a further case, the lawyer for MDAC’s partner organisation, the Estonian Patients Advocacy Association,represented an elderly woman who was a plaintiff in civil proceedings concerning a property matter. 4 Thecourt doubted the woman’s competence despite the fact that she had legal representation and she wassubjected to a psychiatric assessment ordered by the court in view of being appointed a legal guardian.During the psychiatric assessment, the woman explained to the psychiatrist that she could not let out her summer house because it had no electricity. Among other observations, the psychiatrist qualified this line of reasoning as “paralogical”, that is, it violated principles of valid reasoning. The psychiatrist recommendedthat a legal guardian be appointed. However, the court questioned the validity of the psychiatric expertise,and considered the client’s argument to be fully reasonable despite the fact that it was not supported byevidence. On 12 November 2009, the Tallinn Circuit Court concluded that “a psychiatrist does not have thecompetence to assess whether an individual may retain legal standing in a civil court procedure.”

In this case, the Tallinn Circuit Court also stated in its decision that “the fact that the person is not able toindependently cope in civil proceedings cannot serve as a reason to appoint a legal guardian. The need torestrict procedural legal capacity arises only in the case where there is evident risk that the person is not ableto effectively protect their rights and liberties. In this case, it is not possible to unambiguously establish thatthis risk exists.”

Whilst MDAC disagrees that there is a ‘need’ to deprive a person of legal capacity even if they are unableto protect their rights and interest, the Tallinn Circuit Court is right to call for an end to guardianship beingused when the State should instead provide civil legal aid to the many people – the vast majority who have no

disabilities – who would benefit from legal representation in court proceedings.

Referring to Article 24 of the Estonian Constitution which states that everyone is entitled to participate athis/her court hearing, and to Ar ticle 13 of the UN Convention on the Rights of Persons with Disabilities(CPRD) which provides for access to justice, the Tallinn Circuit Court held that “access to the administrationof justice must also be granted to disabled persons”, and that relevant procedural and age-specificadjustments must be provided. Furthermore, the Court held that in accordance with Article 12 of theCRPD on equal recognition before the law and the right to legal capacity, States Parties must takeappropriate measures to provide access by persons with disabilities to the support they may require inexercising their legal capacity.

http://www.epey.ee/

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Given that Estonia has yet to ratify the CRPD, the Tallinn Circuit Court decision is a creative and unprecedentedarticulation of the procedural rights of persons with disabilities. It is hoped that the Code of Civil Procedure

will be amended in response to the call by this court for reasonable accommodation to ensure that the lawno longer supports the obsolete vision of persons with disabilities as objects of treatment, and rather lends itssupport to them, as the CRPD does, as subjects of rights.

MDAC’s work in Estonia is funded by a grant from the Open Society Institute–Budapest.

ENDNOTES

1 This provision of the Code of Civil Procedure is in force since 1 January 2006. See section 204(2) of Code of Civil Procedure which states that, “If the court has doubts regarding the active civil procedural legal capacity of a participant in a proceeding who is a natural person, the court may demand that the person provide a doctor’sopinion to such effect, or to order an examination. If the person refuses to comply with the court’s orders or thedocuments submitted fail to remove the doubts of the court, the court shall initiate proceedings for appointinga guardian for the participant in the proceeding. If initiation of a proceeding for appointment of a guardian for a plaintiff is not permissible for the plaintiff of other petitioner or appellant, the court shall refuse to hear thepetition or appeal.”

2 Civil case no 2-09-28965, Harju County Court , 14 September 2009.

3 Civil case no 2-08-60487, Tallinn Circuit Court, 12 November 2009.

4 Civil case no 2-09-31593, Harju County Court, 26 November 2009. This follows an earlier case decided bythe Tallinn Circuit Court in 2009 in which the court stated that a psychiatric evaluation alone is not sufficient toconclude that a person lacks active legal capacity in civil proceedings, see Civil case no 2-06-38639, decision of

21 January 2009.




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United States

Litigating institutionalisation:Interview with Ira Burnim, Legal Director of theBazelon Center for Mental Health Law

In September 2009, an important decision was handed down by a U.S.Federal Court which reinforced the right to live in the community for

thousands of adults with mental illnesses living in private ‘adult homes’paid by the State of New York. The 2009 decision in Disability AdvocatesInc v. Paterson (known as “DAI”), applied the U.S. Supreme Court’slandmark Olmstead decision from ten years ago which affirmedthat states are required to place persons with mental disabilities incommunity settings rather than in institutions. Both Olmstead and DAIwere litigated by the Bazelon Center. In November, MDAC hosteda litigation strategy meeting with several leading disability lawyersincluding Ira Burnim, Legal Director of Bazelon Center and member of MDAC’s Legal Advisory Network. MDAC took the opportunityto interview him on their latest victory before the courts for thisedition of the newsletter.

1. What is the Bazelon Center?

Much like MDAC, the Bazelon Center engages in legal advocacy for people with mentaldisabilities. Our focus is the U.S. We bring strategic litigation, lobby the U.S. Congress andfederal agencies (ministries), and give advice to both advocates and public officials throughoutthe country. We get involved in U.S. Supreme Court and other appellate cases, advising lawyerson strategy and organising amicus curiae or „friend of the court” briefs. More information isavailable at www.bazelon.org.

2. What did the Supreme Court decide in the Olmstead case?

In 1999, the U.S. Supreme Court ruled that unnecessary institutionalisation is a form of discrimination outlawed by the American with Disabilities Act. (Olmstead v. L.C., 527 U.S. 581(1999)). The Court wrote that “unjustified isolation... is properly regarded as discriminationbased on disability.” It recognised that institutionalisation “severely diminishes” people’slives and that institutionalising people “who can handle and benefit from community settingsperpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” It noted that regulations adopted by the U.S. Department of Justice to implement the Americans with Disabilities Act require that when government providesservices to people with disabilities, it must do so “in the most integrated setting appropriate

Ira Burnim,Legal Director of the

Bazelon Center for Mental Health Law

http://www.bazelon.org./

http://www.bazelon.org/incourt/docket/olmstead.html

http://www.bazelon.org/incourt/docket/olmstead.html

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to their needs.” The regulations define the “most integrated setting” as “a setting that enablesindividuals with disabilities to interact with non-disabled persons to the fullest extent possible.”

3. Has the Olmstead judgment been implemented everywhere ?

The Olmstead judgment applies throughout the U.S., however implementation of the decisionhas been uneven at best. We have been lobbying our national government to secure better implementation, and we have also been bringing lawsuits against state governments. We recentlywon a significant victory in a suit against the State of New York, DAI v. Paterson.

4. What did you hope to achieve in the NY case?

Three things. First, we hoped to help a large group of people with psychiatric disabilities wholived in institutions similar to the social care homes in Central and Eastern Europe. Second, wehoped to demonstrate that people severely disabled by psychiatric illnesses can live on their ownand be full members of their community if given appropriate services and supports. Finally, wehoped to get favourable answers to some legal questions unanswered by the Olmstead decision.

Fortunately, we have had success so far. After a lengthy trial, the judge found that virtually allpeople with mental illness, including virtually all of the 4,500 residents of the 25 social care homesat issue, could live in their own apartments in New York City if they had access to needed servicesand supports. The judge ordered the State of New York to offer the residents what is called in theU.S. “supported housing.” Essentially, “supported housing” is an apartment in a neighbourhoodselected by the resident. The government pays private agencies to lease such apartments and tomake sure that the people with serious mental illness who live in them get the services and supportsthey need to be successful tenants and members of their community. The government pays mostof the rent. The tenants pay 30% of their government pension toward rent. The judge also resolvedsome important legal issues in our favour.

5. What were some of the challenges of taking the NY case?

We had to get access to the social care homes. We had to put together a team of lawyers andexperts. We had to thoroughly investigate the facts. We star ted our work in 2003. It was not until2009 that we had a trial, which lasted 20 days, and got a decision, which is 210 pages long.

Maybe the biggest challenge we faced were attitudes about people with disabilities. We were not

sure how the judge would react to our case. Happily, he responded well to our experts, to thesocial care home residents who testified, and to the other evidence we presented. He becamepersuaded that there was no need for our clients to be segregated in social care homes and thatNew York could provide “supported housing” to our clients with the money it was spending onthe social care homes.

6. Is the case over?

No. The judge will soon issue an order setting forth the details of what New York must do tocorrect its needless institutionalisation of our clients. I have spent much of the last month workingon briefs addressing that matter. Also, the State of New York will probably appeal the decision,

http://www.bazelon.org/incourt/docket/dai.html

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and it is hard to predict what the appeals court will do. Fortunately, when the case reaches theappeals court, we will have the U.S. government on our side. The U.S. Depar tment of Justice was

recently given permission to participate in the case, and it plans to defend the judge’s decision inthe appeals court.

7. What will the Bazelon Center do to ensure the judgment is enforced?

We will be carefully monitoring what the State of New York does, and how our clients are treated. If there are problems, we will raise them before the judge. We may hire present and former residentsof the social care homes to help us with monitoring. We find that, in deinstitutionalisation cases, atleast half the work is ensuring that the judgment is actually implemented.

8. You recently attended an MDAC litigation strategy meeting in Budapest. What do youthink are the learning points for Europe in challenging institutionalisation through thecourtroom?

I thought the strategy meeting was terrific and was impressed with MDAC’s staff and cooperatingattorneys, and the richness of the discussion. Maybe the biggest learning point is that challenginginstitutionalisation in the courtroom can be a productive strategy. Another point is that suchchallenges are not simply about the law. They are about the people themselves, and their strengths, capacities, and aspirations. It’s important to educate the judge about the people onwhose behalf the case is brought and how institutionalisation has diminished their lives. It’s alsoimportant to inform the judge how their lives could be different and better i f they were supportedin the community, and also to assure the judge that we know how to support in communitiespeople with even the most severe disabilities. In short, put a “human face” on the matter andshow the judge there is a better way.



United Nations

UN: Russia must reform legal capacity laws

Last October, the UN Human Rights Committee (HRC) reviewed, among others, the periodic reports of Croatia and Russia, two of the countries in which MDAC has worked. While there are some differencesin the mental disability laws and policies of these countries, they share the same fundamental problemstypical of the entire region, including, most notably, high rates and inadequately reviewed use of involuntaryhospitalisation and treatment (involving disproportionate use of physical restraint), excessive reliance oninstitutionalisation (often leading to life-long confinement in institutions), and unjustified blanket deprivation

of legal capacity accompanied by full (plenary) guardianship.It is the latter issue that MDAC chose to make the focus of its shadow reports to the Committee, first andforemost because, in the form it exists in Russia and Croatia, legal incapacitation amounts to egregiousdiscrimination on grounds of disability and leads to a sweeping and lasting withdrawal of many fundamentalrights entrenched in the International Covenant on Civil and Political Rights (ICCPR).

While often failing to deliver its ostensible goal of protecting the interests of persons with disabilities andassisting them in the exercise of their rights, the measure results in taking away the person’s decision-makingpowers in respect of all important aspects of their life, including such matters as managing their propertyand finances, consenting to or refusing medical treatment, choosing a place of residence, establishing afamily and raising children, and voting and taking part in political affairs. It is worth recalling that Article12 of the UN Convention on the Rights of Persons with Disabilities (CRPD) places special emphasis on the

rights of persons with disabilities to enjoy legal capacity on an equal basis with others (Ar ticle 12). MDAC’sprogramming encourages other United Nations treaty bodies take heed of the disability-specific treaty andsynthesise its provisions into global human rights jurisprudence.

There were further reasons for highlighting the issue of legal capacity. One of them is that the foundationsof the guardianship system are defined in the law, so the bulk of violations can be revealed throughan analysis of the relevant legislation. There is no systematic and comprehensive monitoring of mentalhealth or social care institutions in Russia and Croatia, and particularly with respect to Russia, MDAC haspreviously faced insurmountable difficulties in gaining access to such institutions merely to hand out leafletscontaining human rights information. Furthermore, reform of legal capacity and guardianship legislation isthe focus of MDAC’s current project in Russia.

Achieving the HRC’s pronouncement on the non-compliance of the country’s laws on legal capacity with theICCPR feeds into MDAC’s advocacy activities, adding to the already existing pressure on the Russian policy-makers to reform guardianship which was created by a judgment of the European Human Rights Court in2008 and the Russian Contitutional Court in 2009.

It should be said that engaging with the UN treaty bodies is a relatively new form of advocacy for MDAC,having previously submitted only one shadow report to the HRC and one shadow report to the Committeeon the Rights of the Child.¹ Our own lack of experience was compounded by the Committee’s lack of anymeaningful record of addressing the human rights of persons with (mental) disabilities. During its interactionwith the Committee, MDAC faced challenges in getting mental disability issues onto the Committee’sagenda. In one of the NGO briefings in which MDAC presented during the Committee’s session in Geneva,one of the Committee members noted that the Committee did not yet have an established position on the

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policy and advocacy

http://www2.ohchr.org/english/bodies/hrc/index.htm

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human rights implications of guardianship. As MDAC pointed out to the Commit tee, State parties’ periodicreports do not contain significant reference to ICCPR implementation specifically in the field of mental

health, even in the context of such obvious ICCPR issues as deprivation of liberty in the form of detentionin psychiatric institutions. Russia’s latest repor t is a case in point: while the state report was enthusiasticallypraised by several members of the Committee for being detailed and comprehensive, a mention (let aloneany data) on Russia’s compliance with the ICCPR in the application of its mental health laws and policieswas conspicuous by its absence.

Consequently, in its advocacy aimed at the HRC, MDAC’s task is two-fold: besides the obvious one of raisingconcerns regarding systematic violations of the civil and political rights of persons with mental disabilities,we also need to raise the Committee’s awareness on the relevance of the ICCPR to the established mentalhealth laws and practices such as guardianship, and involuntary hospitalisation and treatment, and to makean explicit link with the disability-specific treaty. Again, legal capacity offers a particularly propitious startingpoint by involving a striking array of rights issues.

MDAC’s shadow reports argued that depriving someone of their legal capacity constitutes disproportionateand objectively unjustifiable interference with a host of rights guaranteed by the ICCPR, including the rightto an effective remedy (Article 2); freedom from cruel, inhuman and degrading treatment (Article 7); theright to liberty as a result of detention in a mental health or social care institution by the guardian (Article9); freedom of movement and deciding on place of residence (Article 12); the r ight to a fair tr ial (Ar ticle 14);the right to equal recognition as a person before the law (Ar ticle 16); the right to marry and found a family(Article 23); and the right to take part in public affairs and to vote (Article 25). The shadow reports alsoargued that all these violations amounted to unlawful discrimination on grounds of disability in violation of

Article 26 of the Covenant.

In its Concluding Observation on Russia, the HRC expressed concern about the lack of adequate safeguards,the disproportionate nature of restrictions on human rights caused by deprivation of legal capacity, andthe significant number of persons who are subjected to this measure in Russia. The HRC placed particular emphasis on the fact that people deprived of legal capacity in Russia do not have legal remedies to challengeviolations of their rights, including ill-treatment or abuse by guardians or staff of mental health and socialcare institutions. The practice of depriving a person of legal capacity on the basis of the mere existence of apsychiatric diagnosis was criticised. In short, the Committee’s recommendations cover most major deficienciesof Russia’s law and policies related to legal capacity and guardianship, namely:

• any measures restricting a person’s legal capacity on account of a disability should be necessary,proportionate and based on the person’s individual circumstances;

• such measures should be attended by effective procedural safeguards which include prompt accessto an effective judicial review of guardianship;

• persons deprived of their legal capacity should retain access to effective legal remedies againstviolations of their rights;

• persons with disabilities should be provided with less restrictive alternatives to detention in mentalhealth institutions and forced mental health treatment;

• there should be independent inspections of mental health institutions to prevent ill-treatment.

With respect to Croatia, however, although MDAC raised the same issues concerning guardianship in itsshadow report on Croatia as it did in its report on Russia, the Committee failed to incorporate these concerns

http://www2.ohchr.org/english/bodies/hrc/docs/co/CCPR.C.RUS.CO.6.pdf

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into its Concluding Observations. It is MDAC’s experience that to combat inconsistency within the Committee’soutput, increased engagement is necessary with Committee members. In this respect, MDAC is grateful for the

advice and guidance of Freedom House, an independent watchdog organisation that supports the expansionof freedom around the world, and the CCPR Centre, a Swiss-based NGO working to promote the participationof NGOs in the work of the HRC by raising awareness and strengthening NGOs’ capacities and by providingtechnical and legal support at all stages of the reporting process. In particular, the CCPR Centre assistedMDAC in its strategies as to how to engage with the HRC to take forth our concerns.

Despite the shortcoming in Croatia’s Concluding Observations, the HRC did highlight one of MDAC’sconcerns and was strong in condemning Croatia’s use of cage beds in children’s social care institutions.Cage beds come in different forms, they can be constructed of metal bars or of a metal frame and netting.The purpose is to confine someone on a bed: all four sides and often the top of the bed is covered withmetal bars or netting. Both types are referred to as cage beds in this report since the effect of enclosinga person within the confines of the bed is the same. The Committee recalled that this practice constitutes

inhuman and degrading treatment in violat ion of Ar ticles 7, 9, and 10 of the Covenant and urged Croatiato take immediate measures to abolish their use in psychiatric and related institutions. Cage beds arefamiliar to the Committee: in 2003 they condemned their use in Slovakia (para 13) and in 2007 in theCzech Republic (para 13).

Read MDAC’s shadow report on Russian here.

Read MDAC’s shadow report on Croatia here.

MDAC’s work in Russia is supported by a grant from the Civil Rights Defenders (formerly SwedishHelsinki Committee) and by a grant from the UK Government’s Strategic Programme Fund.

ENDNOTE

¹ In 2007, MDAC submitted a shadow report on the Czech Republic to the Human Rights Committee on theCzech Republic (resulting in paras 13, 14 of the Concluding Observations), and in 2008, submitted a shadowReport on Bulgaria to the Committee on the Right of the Child (resulting in paras 25, 28, 29, 36, 40, 44, 58 of the Concluding Observations). In 2003, submissions were also made to the HRC with respect to Estonia andSlovakia which resulted in para 10 of the Concluding Observations on Estonia, and para 13 of the ConcludingObservations on Slovakia.

http://www.freedomhouse.org/template.cfm?page=1

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http://www2.ohchr.org/english/bodies/hrc/docs/co/CCPR.C.HRV.CO.2.doc

http://www.mdac.info/documents/118_MDAC_Cage_Bed_Report.pdf

http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/CCPR.CO.78.SVK.En?Opendocument

http://daccess-dds-ny.un.org/doc/UNDOC/GEN/G07/434/39/PDF/G0743439.pdf?OpenElement



http://www.mdac.info/en/MEDIA+RELEASE+01.08.2007




http://www2.ohchr.org/english/bodies/crc/docs/co/CRC.C.BGR.CO.2.pdf

http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/CCPR.CO.77.EST.En?Opendocument





http://www.unhchr.ch/tbs/doc.nsf/(Symbol)/CCPR.CO.77.EST.En?Opendocument

http://www2.ohchr.org/english/bodies/crc/docs/co/CRC.C.BGR.CO.2.pdf




http://www.mdac.info/en/MEDIA+RELEASE+01.08.2007





http://www.mdac.info/documents/118_MDAC_Cage_Bed_Report.pdf

http://www2.ohchr.org/english/bodies/hrc/docs/co/CCPR.C.HRV.CO.2.doc


http://www.freedomhouse.org/template.cfm?page=1




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UN Committee on the Rights of Persons with Disabilities

“Day of general discussion” on legal capacity

The Convention on the Rights of Persons with Disabilities (CRPD) was adopted on 13 December 2006 by theUN General Assembly. The Convention and its Optional Protocol entered into force on 3 May 2008. So far,the Convention has acquired 144 signatories and 76 states parties.

The Committee on the Rights of Persons with Disabilities, the body of independent experts established by theCRPD and responsible for reviewing progress made by states parties in implementing the CRPD, devoted its2009 Day of general discussion on Article 12 of the Convention, which concerns the right to equal recognition

before the law and the right to legal capacity.The purpose of the days of General Discussion is to foster a deeper understanding of the contents and implications of the Convention asthey relate to specific articles or topics. Representatives of Governments,United Nations human rights mechanisms, United Nations bodiesand specialised agencies, non-governmental organisations, nationalhuman rights institutions as well as individual exper ts and children werewelcome to take part. In reality, only a small number of statesattended the meeting and most of the participants came from civilsociety. MDAC was represented by Executive Director, Oliver Lewis,and Senior Advocacy Officer, Gabor Gombos. Oliver blogged theday, which you can read here.

The 2009 Day of general discussion was intended to providestates and other actors with more comprehensive guidance asto their obligations to promote and protect the right to equalrecognition before the law as outlined in Article 12 of theConvention. Given the complexity of the concepts and issues

involved, the Committee divided the full day programme into twoworking groups on the following topics, one on legislative reform and one on

practical measures to implement Article 12.

Preparations for the Day of general discussion

Civil society and individual experts had been encouraged to submit their reasoned views as well as concreterecommendations for the Committee on the themes of the Discussion prior to the meeting. Among the four written submissions, MDAC’s joint paper with the Hungarian Association for Persons with Intellectual Disabilitiesattracted much interest as it reported a concrete case study of Hungary. Hungary has been among the fewcountries which have carried out legislative reform to comply with the CRPD on the recognition of universal legalcapacity of all persons with disabilities in conjunction with the right to access support for decision making.

From the lessons civil society have learned in the Hungarian exercise, MDAC and the Hungarian Associationfor Persons with Intellectual Disabilities made the following recommendations which were submitted to theUN in advance and which can be found on the webpage of the Office of the UN High Commissioner for Human Rights:

http://www.mdac.info/en/21-october-legal-capacity-day-un



http://www.mdac.info/en/21-october-legal-capacity-day-un




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• The CRPD is an international human rights treaty as well as a developmental instrument, and anawareness of the hybrid nature of the Convention is crucial for States Parties when they implement

Article 12. The effective implementation of the right to equal recognition before the law requires thatsocial developmental interventions complement the appropriate legislative and policy measures.Without addressing the developmental dimension of the CRPD, persons with disabilities who arecurrently not only perceived as incapable, but who may also be deprived of their legal capacity,cannot be brought to the forefront of the paradigmatic changes envisaged under Article 12. Examplesof developmental interventions which may be necessary include: establishing infrastructures andinstitutions which promote and co-ordinate supported decision-making and the access to supportnetworks by persons with disabilities; technical and financial assistance extended to peer supportand self-advocacy groups and organisations; creation of fora for mutual learning on various waysto achieve an effective implementation of equality before the law; awareness raising of variousgroups including persons with disabilities, their families, professionals working with persons withdisabilities; and mobilisation of community resources towards the implementation of the aspirations

of the Convention.• We suggest the Committee recommend that States Parties, as part of the implementation,

immediately abolish every law, legal institution and intervention which may result in disability baseddeprivation of a person’s legal capacity including the capacity to act. Legal disqualification toenter into contracts, the institution of plenary guardianship and the procedure of disability basedcompulsory commitment exemplify such like laws, legal institutions and interventions. In parallelto abolishing laws, States Parties should enact enabling legislation on alternatives to substituteddecision making. These alternatives should not affect the person’s legal capacity but respect therights, will and preferences of the person, be free of conflict of interest and undue influence, butproportional and tailored to the person’s circumstances, as required by the Convention. Equallyimportantly, along with the law reform measures, the State should reallocate financial and other community resources in a manner that is consistent with the shift of the legal paradigm fromsubstituted towards supported decision-making.

• Article 12(3) obligates States Parties to “take appropriate measures to provide access by persons withdisabilities to the support they may require in exercising their legal capacity”. We suggest that theCommittee encourages States Parties to give due consideration to the accessibility of such support.

Accessibility requires the removal of existing attitudinal barriers that may prevent persons withdisabilities, who are still stereotypically seen as incapable, from effectively accessing support to maketheir own decisions. Negative attitudes of families, public administration, judiciary and society atlarge may hinder any effective implementation of Article 12. The necessary attitude changes cannotbe achieved without the application of measures of social development. Positive portrayal of personswith disabilities as capable people in the media; self-advocates as role models for others; participationof self-advocates as trainers in the training of professionals are all examples for measures which can

make access to supported decision-making a reality.

• When adopting and implementing measures necessary for the exercise of legal capacity, specialfocus should be given to those persons with disabilities who, due to their long-term social isolation,do not have the social networks that would enable them to access supported decision making.Persons who have been living in institutions should be of particular focus. Temporary measures maybe needed to be established which do not necessarily meet all the principles of supported decision-making (such as trust based relationships), but which assist persons with disabilities in their right toexercise legal capacity. The need for such temporary measures should not justify the deprivation of legal capacity. One example for such a temporary measure can be a court-appointed “professionalsupporter” whose duties would include assisting the person with disability to make a legally bindingdecision. An equally important duty is to assist the person with a disability to build up his/her support




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network through an active facilitation of social interactions between the person with disability andindividuals from the community.

• We suggest the Committee remind States Parties to comply with their treaty obligations to activelyinvolve and closely consult with persons with disabilities in the implementation of the right to equalrecognition before the law. This involvement and consultation should be extended to persons withdisabilities who are currently under guardianship and/or live in institutions. Capacity-building isrequired to ensure meaningful involvement of these groups. Provision of access by persons withdisabilities and their organisations to such capacity-building should be seen as part of the StatesParties’ obligations to comply with the Convention. Such involvement is necessary from the earlieststages of legislative and policy planning up til practical implementation and through to themonitoring of the process.

The World Network of Users and Survivors of Psychiatry (WNUSP) made a submission on the comparison

between the new paradigm of suppor ted decision making and the old paradigm of substituted decision-making.While on the level of rhetoric everybody agrees that CRPD calls for a paradigm shift in terms of recognisingpersonal autonomy on an equal basis with others, many States are uncertain about their obligations under

Article 12. WNUSP’s submission aimed at clarifying the differences between the two approaches towardslegal capacity. The lack of clarity in understanding what Article 12 demands is documented by another submission written by the National Association of Community Legal Centres, Disability Discrimination Legal Centre, Australia. The other WNUSP document contains specific recommendations on the implementationof Ar ticle 12 from the viewpoint of persons with psycho-social (mental health) disabilities.

The Day of general discussion

This was the first event which was billed as a space to openly discuss issues around legal capacity of personswith disabilities with members of the Committee. The organisational and logistical hiccoughs contributedto the day not achieving, in MDAC’s opinion, its aims. A more substantial involvement of civil society at theorganisational stage also may improve the quality of the next Day of general discussion.

After the official opening speeches by Committee members which demonstrated the lack of clarity inunderstanding the CRPD mandate on legal capacity, Professor Amita Dhanda delivered her keynotepresentation. Amita has been contracted by the Office of the UN High Commissioner on Human Rights todevelop a module on the right to legal capacity. In her presentation, Amita emphasised the need for opendiscourse on legal capacity, a discourse which values listening to the various views, especially the ones basedon experiential expertise by experts with disabilities. She used the examples of India and Hungary to illustratethe need and also the challenges of such discourses.

The morning session ended with a panel on the legal contents of legal capacity. MDAC presented theHungary experience, Tina Minkowitz from WNUSP summarised their submission, while David Webb,a survivor researcher and scholar from Australia spoke about how supported decision making can bebeneficial in relation to the prevention of suicide. The afternoon panel concentrated on the practicalmeasures of implementation. Michael Bach from the Canadian Association for Community Living, one of the pioneering NGOs in the field of supported decision making gave an easy to understand and highlyeducative presentation on how support works in practice for people with intellectual disabilities.

MDAC was disappointed that the “Day of general discussion” offered little opportunity for any actual discussion.


http://www2.ohchr.org/SPdocs/CRPD/DGD21102009/Article12NatlAssoCommLegal.doc


http://www2.ohchr.org/SPdocs/CRPD/DGD21102009/WNUSP_Legal_Capacity.doc

http://www2.ohchr.org/SPdocs/CRPD/DGD21102009/WNUSP_Legal_Capacity.doc







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Expected follow-up

The Committee will likely issue a General Recommendation on Article 12 during their next session. In draftingthe recommendations they will make use of the outcome of the Day of general discussion, including thewritten submissions.

Independent to the Committee, the Office of the High Commissioner will soon circulate for public consultationa module on legal capacity written by Amita Dhanda. It is hoped that the OHCHR module and the Commit tee’sGeneral Recommendations will help States Parties in their implementation of the mandated paradigm shift toensure that all persons with disabilities will be able to be agents of their own lives.

MDAC’s international advocacy work is funded by a grant by the Open Society Institute–Budapest

and by the Sigrid Rausing Trust.




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Africa

Implementing the UN Convention on the Rights of Persons with Disabilities: opportunities and challenges

By Eyong Mbuen, MDAC Policy and Advocacy Officer

In Africa, natural disasters, malnutrition and diseases, road traffic

and industrial accidents, environmental hazards and conflicts are themain causes of disability. Despite the increasing number of children,adults, and elderly people with disabilities both in urban and ruralareas, people with disabilities remain the most disadvantaged andvulnerable ‘group’ in societies with restricted access to opportunities,social services and weak legal frameworks to promote and protecttheir basic rights and needs.

A house headed by a person with a disability stands a greater risk of being plagued by intergenerational poverty: the head of the family is

unable to adequately provide for the basic needs such as the educationand health care of children, both preconditions to securing a prosperous

future. While developing countries are home to an estimated eighty percent

of the 650 million persons with disabilities in the world, World Bank statisticsshow that twenty percent of the world’s poorest people are disabled. Since

marginalisation of persons with disabilities has been the norm in Africa (as it has around the globe), peoplewith disabilities have suffered and continue to suffer more than others, because they are excluded fromschools, employment and political participation. It is noticed that even the Poverty Reduction StrategyPapers prepared by most Afr ican states,¹ usually fail to, or at best inadequately include the rights or needsof persons with disabilities.

UN Convention in Africa

The recognition of disability rights as human rights came with the adoption and entry into force of the UN

Convention on the Rights of Persons with Disabilities (CRPD) in May 2008. The CRPD not only gave hopeto over 80 million people with disabilities in Africa,² but it has equally provided them with a human rightsand developmental tool to combat the environmental, physical, legal, social and attitudinal barriers tothe enjoyment of their human rights. It is hoped that the implementation of the CRPD and the protectionof the rights therein will limit marginalisation and reinforce equal opportunities in the areas of educationand employment and also guarantee equality before the law.

As on other continents, the CRPD will also work to raise awareness in Africa amongst persons withdisabilities of their rights and provide guidance on how to invoke them and seek justice. The CRPD will alsoguide governments on how to legislate disability-friendly laws and policies, and African states may benefitfrom more focused technical and financial support to implement the Convention through internationalcooperation. Of primary importance is that the CRPD ensures that people with disabilities are equal

Eyong Mbuen,MDAC Policy and

Advocacy Officer

http://www.mdac.info/en/eyong-mbuen

http://www.mdac.info/en/eyong-mbuen




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members of a participatory democracy, as many people with mental disabilities are excluded even fromvoting due to colonial laws which prohibit persons of “unsound mind” from voting. Legal capacity, an

important issue in MDAC’s programming in Europe, is of equal importance in Africa. Of great significanceis the obligation under Article 31 of the CRPD which requires states to collect data and statistics on disability,a practice which is rarely carried out in Africa and has made it difficult, therefore, to assess progress, or regress, against measurable standards.

However, despite all the hopes that the CRPD has brought to people with disabilities in Africa, it is of primaryimportance that the CRPD is effectively implemented so that these rights become a reality. Africa confrontsserious challenges in this pursuit due to the prevailing social, economic, political and legal environment inmost African states.

Disability workshop

From the 21 to the 23 September 2009, I participated in an annual disability workshop on Human RightsMonitoring and the UN Convention on the Rights of Persons with Disabilities organised by the Secretariat of the African Decade of Persons with Disabilities (SADPD) in Cape Town, South Africa. Participants, from over eleven African countries, included experts on disability issues from civil society, academia, governments andthe UN. Most of the participants at the annual disability workshop came from countries that have ratifiedthe CRPD. Among the issues discussed at the workshop were the challenges faced by African states inimplementing the CRPD.

So what are these challenges, and are they surmountable? Participants agreed that the CRPD is the mostimportant move towards the promotion and protection of the rights of persons with disabilities on thecontinent thus far. In Africa today, over 80 million persons with disabilities experience human rights violations,marginalisation and stigma, and in particular persons with mental health and intellectual disabilities havebeen rendered the most vulnerable and voiceless group among persons with disabilities – this is also evidentfrom the larger number of NGOs for people with sensory and physical disabilities, and the greater amountof donor funding and governmental attention for these issues.

Some communities still associate disabilit y with a curse, a manifestation of sins, and witchcraft, particularlywith respect to mental health or intellectual disabili ties. While disability is considered as a disgrace to mostfamilies, the common response to disability has been pity and charity, and it has been treated as a purelymedical issue. As a result, persons with disabilities in Africa, as in most parts of the world, suffer fromenvironmental, physical, legal and social barriers, which inhibit them from achieving their full potential onan equal basis with others. A reflection on the implementation of the CRPD in Africa identified challengesat the procedural, structural, and substantive levels. This shows that implementation of the CRPD is ashared challenge.

Procedural challenges

At the procedural level, there is a need for increased ratification of the CRPD by African states. By 3 May2008, the date upon which the CRPD entered into force, seven African countries had ratified it.³ To date, 13additional countries have ratified the CRPD raising the total to 21 African states.4 Considering that the CRPDhas been in force for the last 20 months and has achieved 20 African ratifications may sound encouraging,however, the African continent consists of 54 countries, therefore the ratification gap remains a primarychallenge to the implementation of the CRPD on the African continent.




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It has become evident that for those countries which had pre-existing disability-specific legislation (suchas South Africa, Uganda, Kenya and Tanzania), the ratification process was a smoother ride, despite the

governments recognising that legislation would need to be reviewed for CRPD compliance. For other countries without current disability specific legislation, there is a need for an immediate in-depth examinationof the CRPD and a review of how the CRPD can be integrated into domestic law, and a strategic decisionabout whether law reform should happen before ratification – which would delay ratification for severalyears – or after ratification – which would open states to be exposed to international criticism, but wouldalso open them up for international assistance.

At MDAC, we encourage states to ratify as soon as they can, not least to express the people’s will that theyshould join the international community of countries which purport to respect, protect and fulfil the rights of persons with disabilities, but because domestic and international NGOs will be able to more effectively assistthe governments to implement the Convention.

Structural challenges

Some of the key structural challenges to the implementation of the CRPD, which are common to all Africancountries, are:

• The lack of technical capacity of persons with disabilities, disabled peoples’ organisations (DPOs)and government officials. The majority of persons with disabilities in Africa have little or noawareness about the CRPD, let alone their basic rights. Most of them have benefited from little tono education, and there is little occasion for them to become aware of their rights. In addition, theCRPD has not been disseminated widely, nor is it available in accessible formats. In general, thecapacity of DPOs in most African countries is comparatively weak, and coupled with the lack of a unified voice, their contribution towards the implementation of the CRPD is strongly hampered.Likewise, most government officials have little CRPD know-how.

• There is a shor tage of human and financial resources. Resources are needed not only to pro-mote the CRPD amongst the public, including dissemination in different languages and for-mats, but also to devise or amend current legislation, provide training to government decision-makers, local municipalities healthcare professionals, teachers, the judiciary and many other stakeholders. The deficiency of resources constitutes one of the principal stumbling blocks tothe implementation of the CRPD across Africa affecting all stakeholders, both those in civilsociety and those wi thin the government.

• The lack of political will by most states remains one of the greatest challenges to the implementationof the CRPD. Ratification of the CRPD does not always follow with concerted political action for

implementation. In certain decentralised states, it may arise that responsibilities are continuallyshifted between the local and central government, with the result that no single entity is responsibleor held accountable for CRPD implementation. There is a real risk that the CRPD will remain strongon paper but that there will be no change in practice. In other cases, where governments haveshown their intention to implement the CRPD, either through signing or ratifying the CRPD, thismomentum may be obstructed by the election of a new government and the introduction of newpolitical priorities.

• It is indisputable that disability results from the interaction of persons with impairments andattitudinal and environmental barriers which are unfriendly to their full and effective participationin society on an equal basis with others. Combating negative atti tudes and stereotypes constitutesa global challenge to the implementation of the CRPD. In Africa, this poses a major obstacle




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because discrimination has been heavily integrated into the culture and society, hindering theinteraction of persons with disabilities with the public and the government, which affects their

interaction in virtually all spheres of life. The area of employment provides a useful examplebecause persons with disabilities face serious hurdles in accessing employment opportunities asthe society refuses to value their competences and skills. Therefore, the concept of reasonableaccommodation is yet to be accepted and introduced in most of the continent. In some countries,it is only the government which provides a limited amount of employment opportunities for personswith disabilities.

Substantive challenges

Looking at the substantive challenges to the implementation of the CRPD in Africa, few of the Africancountries that have ratified the Convention have set up national focal points for governments to coordinate

implementation of the Convention in accordance with Article 33(1) of the CRPD. Among the peopleparticipating at the workshop, people from just three countries testified to having a coordinating body, whilein three other countries, the establishment of such a body is ongoing.

Governments are slow to establish or designate a framework of independent mechanisms to promote, protectthe rights of people with disabilities and monitor the implementation of the Convention as required under

Article 33(2).

Some of the other challenges to the implementation of the CRPD in Africa concern the likelihood thatstates enter reservations to the Convention. Some states perceive certain provisions of the CRPD to bemore difficult to implement than others and there is a risk that states will view the CRPD as a negotiabledocument. It is evident that if the CRPD is perceived as a document up for barter, it is the rights of personswith mental health and intellectual disabilities which will be most af fected, not just because the recognitionof their rights as human rights has been slow, but also because wide scale misunderstanding and ignorancehas led most communities to consider their problems solely as a medical issue. Therefore, implementationof a provision such as recognition of legal capacity under Ar ticle 12 of the CRPD, or detention in hospitalsunder Article 14, which relate particularly to persons with mental health and intellectual disabilities, willrequire a complete change in mindsets.

Concerning economic, social and cultural rights, as provided in Article 4(2) of the CRPD, the issue of “progressive realisation” also constitutes a challenge to the implementation of the CRPD in Africa. Africais comparatively poor. Some states will interpret “progressive realisation” as a pretext for idle or evenretrogressive policies. As noted above, Article 31 of the CRPD addresses this issue by providing the obligationupon States Parties to gather and make available data and statistics relating to persons with disabilitieswithin their countries. These statistics and data will assist the governments, NGOs and the UN Committee

on the Rights of Persons with Disabilities to measure the progressive realisation of the economic, social andcultural aspects of the CRPD provisions.

Another substantive challenge to the implementation of the CRPD in Africa is how to maintain and ensureinternational cooperation in accordance with Article 32 of the CRPD. The CRPD envisages the importanceof international cooperation between and among states to support national efforts towards the realisationof the objectives of the CRPD, without allowing states to skip their obligations under the CRPD for want of international cooperation. While there is need for genuine international cooperation to advance the rights of people with disabilities, there is a possibility that some African states will turn to overly rely on internationalcooperation and make progress conditional upon international assistance.




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African human rights mechanisms and their role in CRPDimplementation

The African Commission on Human and People’s Rights (hereinafter “African Commission”) is theenforcement mechanism established by the African Charter on Human and Peoples’ Rights with a humanrights mandate of promotion, protection and interpretation of the African Charter. The African Commissionhas done little with regard to the rights of persons with disabilities. Some of the reasons for this are a lackof resources, lack of opportunities, and because to date it has not addressed disability issues in any greatdetail. The African Commission’s complaint mechanism has been under-utilised; it has ruled on only onedisability rights case, Purohit and Moore v. The Gambia.5 It is regrettable that the African Commission hasnot yet sought to play a central role in advancing the implementation of the CRPD in Africa. But in CRPDterms, it is still early days.

The African Union proclaimed 1999 to 2009 as the “African decade of persons with disabilities” and the

Secretariat of the African Decade of Persons with Disabilities (SADPD) was established as the implementingbody for this initiative. At the end of the ten years, the SADPD was operational in only 21 of the 54 Africanstates. With the extension of the decade from 2010 to 2019, there is need for an expansion of the work of theSADPD into more African states, particularly given that the SADPD also has the mandate to lobby states toratify and implement the CRPD.

It is worthy to note that the strict limitation of access by individuals to the African Court of Human andPeoples’ Rights poses a great challenge for people wanting to utilise regional mechanisms to raise disabilityrights issues. The 1998 Protocol to the African Charter on Human and Peoples’ Rights (which establishedthe African Court of Human Rights) restricts the rights of individuals and NGOs to bring cases to the Court.So does the 2008 Protocol (which merges the African Court of Human and Peoples’ Rights and the Courtof Justice of the African Union to establish the African Court of Justice and Human Rights), unless the StateParty has made a declaration accepting the jurisdiction of the Courts to receive complaints from individualsclaiming to be victims of rights violations. Such provisions represent obstacles for victims of rights violationsin seeking adequate and efficient redress, and this will mean that the Geneva-based UN Committee on theRights of Persons with Disabilities may have more cases from Africa than Europe or the Americas due to thedifficulty of accessing its regional mechanisms to protect individual rights.

There are some discussions taking place about the merits of coming up with an Africa-specific disabilityrights text. The proponents say that there is a need to ‘Africanise’ the CRPD, which would better enhance theimplementation of the CRPD. Opponents say that African governments and African NGOs played a centralrole in developing the CRPD, and a regional sister treaty would not enhance the CRPD’s implementation, buthinder it. It may be too early to tell whether there is need for an African regional legal framework to provideadditional protection to the rights of persons with disabilities in Africa. MDAC considers the debate somewhatof a distraction from the real work of implementing the CRPD.

As well as utilising the CRPD and the domestic and international mechanisms which it creates, efforts shouldbe taken to utilise existing instruments, such as the African Charter on Human and Peoples’ Rights, the

African Women’s Protocol and the African Child Char ter. Also there is the possibility to take up disability rightsviolation cases to the African Commission after exhausting all domestic remedies, considering that access tothe African Commission is open to everyone and there is no victim requirement. Furthermore, African statesshould give individuals access to the African Court of Human and Peoples Rights (and the future AfricanCourt of Justice and Human Rights when it comes into force) by making the declaration accepting the court’sjurisdiction to receive complaints from individuals and NGOs, and to swiftly ratify the recent 2008 Protocolthat merges the two courts so that the merged court can become operational.




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These challenges can be overcome

Despite all the challenges highlighted here, strong possibilities for efficient CRPD implementation in Africacould exist if more is done to strengthen the capacity of DPOs and persons with disabilities to invoke their rights in practice. There is an indispensable need to strengthen the SADPD with both human and financialresources which will enable it to expand its mandate and engage with more African countries.

Governments need to make efforts to raise awareness amongst their civil servants, and they need to rollout disability rights training programs for community leaders, civil society organisations and an array of professionals to provide them with an understanding of the principles and rights enshrined in the CRPD.This will create a basis for implementation of the CRPD in Africa. In addition, there is need for a genuineand collaborative form of international cooperation to provide a carrot for governments to implement theCRPD, and capacity-building for the creation of vibrant civil societies which can provide the stick in holdinggovernments to account.

ENDNOTES

¹ This paper is prepared by member countries to the World Bank and IMF through a participator y processinvolving domestic stakeholders and development par tners such as the World Bank and IMF. The paper describes the countr y’s structural, social policies, and macroeconomic programs aimed at promoting growthwhile reducing poverty.

² AK Dube, “The Convention: A New Dawn for Disabled Persons in Africa”. International Rehabilitation Review.Summer 2009 Vol. 58, No 1.

³ These are Egypt, Gabon, Guinea, Mali, Namibia, South Africa and Tunisia.

4 The additional countries are Burkina Faso, Kenya, Uganda, Niger, Malawi, Tanzania, Rwanda, Sudan, Lesotho,Seychelles, Morocco, Zambia, and Mauritius (which ratified the Convention on 8 January 2010).

5 Comm. No. 241/2001, African Commission on Human and Peoples’ Rights (2003).




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Czech Republic

Legal capacity from the Czech and European perspective

On 22 October 2009, MDAC and its Czech partner organisation, the League of Human Rights (Liga), held aconference in Brno to explore capacity assessments in the Czech Republic and other European countries. Thegoal of the conference was to provide an overview on different tools that can be used in order to decide onfunctional capacity. Participants from various fields introduced different approaches of assessing capacity andrelated processes and compared them to Czech practice.

The lack of standardised capacity assessment methods in the Czech Republic often leads to a subjectiveview presented by the assessing psychiatrist. Appropriate capacity assessment by medical experts is essentialbecause for the most part, it is often the only evidence courts take into account in legal capacity (guardianship)proceedings. In practice, medical experts conflate their examination of a person’s functional capacity withmental illness, without further examining the specific social circumstances in which an individual makesdecisions. The individual concerned is thus considered ‘incapable’ to make their own decisions solely basedon their diagnosis of a mental illness. MDAC focuses much of its litigation and advocacy efforts on exposingand addressing the practices of medical exper ts who make these recommendations, and courts which continueto rely on this sort partial ‘evidence’.

The keynote speaker at the conference was Dr Georg Hoyer, Professor of Social Medicine at Tr ømso University,Norway, and from October to December on sabbatical and appointed as Senior Fellow at MDAC in Budapest.

Georg gave a presentation about different tests used for capacity assessment across the world. He firstoutlined the conceptual framework of capacity assessment. He explained what legal capacity is and how itcan be distinguished from functional capacity, which some people call ‘competence’. Then he introduceddifferent layers in which functional capacit y can be examined, noting that an integral part of the assessment isconsidering the broader circumstances in which the assessment is done. Georg identified various assessmenttools and concluded that although the importance of using a good instrument for functional capacityassessment is essential, such assessments cannot take place without a broad overview of all the factors thatinfluence one’s decisions.

MDAC’s Czech Legal Monitors, Zuzana Durajová and Maroš Matiaško, gave presentations about capacityassessment from the perspective of the European Court of Human Rights. They analysed several judgmentsand compared them with current practice in the Czech Republic. They mentioned different kinds of legal

tests for capacity assessments, and highlighted that an approach which conflates functional capacity witha mental illness diagnosis – a so-called ‘status test’ – has repeatedly been found not to comply with theEuropean Convention on Human Rights, such as in the cases of Winterwerp v. Netherlands, X v. Croatia and Shtukaturov v. Russia. However, in Czech legislation this approach remains in use. For example, theright to vote as well as parental rights are automatically restricted if a person is deprived of their legalcapacity, without any form of functional assessment being carried out which would focus on the issuesof voting or parenting. The Czech legal monitors expressed the need to advocate for change in differentareas of legislation.

Lucie Rybová from the Czech Association for Mental Health talked about the legal protection of persons inpsychiatric hospitals and social care institutions. She stressed that the standard of the protection is inadequate,given the scope of the limitation of rights of people in such institutions. Institutionalised people are often


http://www2.uit.no/www/inenglish








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prohibited from accessing justice, they are not legally able to file complaints against the institution or itsemployees. Even if such procedures do exist, they are ineffective in providing adequate protection of rights of

institutionalised individuals.

The last speaker, Petra Zdražilová from the Ombudsman’s office described the monitoring process in psychiatrichospitals and social care institutions. She specified the areas which the monitoring covers, e.g. respect for privacy, use of restraints, education, and sexual and reproductive rights. She also mentioned the challengesof seeking change through monitoring owing to the weak legal powers of the Ombudsman. Change withininstitutions is often slow and difficult. She said that the Ombudsman is a proponent of closing institutions andis in favour of building community-based services.

The conference revealed gaps in the Czech legislature and practice which are inconsistent with principlesembedded in the UN Convention on Rights of Persons with Disabilities which the Czech Republic ratifiedone month before the conference in September 2009. The lack of systematic and objective tests for

functional capacity assessments coupled with ineffective monitoring of places of detention show that theprotection of the rights of people with mental disabilities is still unsatisfactory, and these weaknesses callfor significant legislative reform, endeavours which MDAC and Liga’s ongoing advocacy and strategiclitigation are trying to address.

MDAC’s work in the Czech Republic is supported by a grant from the Trust for Civil Society inCentral and Eastern Europe, and a grant from the Open Society Institute–Budapest.




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WHO

Better health for better lives

On 15-16 December 2009, the World Health Organization (WHO) Regional Office for Europe, in collaborationwith the Children’s High Level Group (CHLG), held a meeting in London as part of the ongoing consultationconcerning the development of a European declaration on children with intellectual disabilities and their families entitled “Better Health for Better Lives”.

What is the declaration about?

The WHO has launched this initiative, in cooperation with the governments of the member states of theEurope region, to agree to a set of priorities and recommended actions in order to improve the health andwell-being of children and young people with intellectual disabilities. The drafting of the declaration hasbeen supported by a steering group comprising self-advocates, family members, academics, clinicians,service providers, and other relevant stakeholders from non-governmental and government sectors, andinternational organisations.

The Declaration contains ten priority areas which are considered to be matters of urgency:

1. Protection of children and young people with intellectual disabilities from harm and abuse.

2. Transfer of care from institutions to the community.

3. Enabling children to grow up in families.

4. Identification of the needs of each child and young person.

5. Ensuring that good quality health care is available.

6. Safeguarding the health and well-being of family and family carers.

7. Enabling children with intellectual disabilities to speak up for themselves, be listened to, and makea contribution within their communities.

8. Building the capacity and reinforcing the commitment of the workforce.

9. Collecting essential information and assure quality.10. Investing equitably.

These priorities are followed by a set of actions that are recommended to facilitate their implementation.The declaration is to be opened for signature in June 2010 by representatives of European governmentsat a political event at a location yet to be decided. By their signature, the governments will also agreeto adopt their own action plan to improve the health and well-being of children and young people withintellectual disabilities in their respective countries. By signing the declaration, states commit themselvesto ensure that children with disabilities are equal citizens with the same rights to health and social care,education, protection and support as non-disabled children and with equal opportunities to live stimulatingand fulfilling lives in the community with their families and alongside their non-disabled peers.

http://www.euro.who.int/


http://www.lumos.org.uk/

http://www.lumos.org.uk/





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It is expected that a final version of the declaration will be available towards the end of January 2010, after which a similar meeting will be held for state representatives in April with the final signing of the document in

summer 2010.

What is MDAC’s viewpoint on the draft declaration?

MDAC was grateful to have been invited to the meeting which was held in an open manner within a constructiveworking environment which facilitated maximum consultation with the NGO participants. MDAC providedseveral suggestions about how to improve the wording of the text to ensure that human rights play a centralrole, and sent its textual recommendations to the WHO. MDAC will not be endorsing the text until a finalversion has been published. At this stage MDAC has several concerns and suggestions:

• Declaration at the cost of implementation? MDAC remains skeptical about how a non-legally

binding political declaration can in of itself result in improvement for people who are currentlyvictims of human rights violations by states failing to stamp out discrimination, neglect and abuseoccurring in both residential institutions and in various community settings. There is a risk thatby signing up to this non-binding document, governments will be able to claim that they aretaking ‘action’, and will report on this as part of their obligations to effectively implement theright to health, as set out in binding international human rights law such as the United NationsConvention on the Rights of Persons with Disabilities, the United Nations Convention on theRights of the Child, the United Nations Covenant on Economic, Social and Cultural Rights, andthe European Social Charter. The age of declarations and political niceties is over and the focusmust be on implementation of human rights standards. MDAC encourages the WHO to monitor and report publically on state (in)actions.

• Holistic approach to health? The WHO is seeking to improve health of children who are oftenhoused in institutions which are the responsibility of ministries other than the ministries of healthwhich are the WHO counterparts, and that it is important for the WHO to engage cross sectorally.MDAC asks the WHO to engage also with ministries of social care, and ministries of education.MDAC also urges the WHO to coordinate its actions with the government disability rights focal pointsin those countries which have ratified the UN Convention on the Rights of Persons with Disabilities(see Article 33(1) of the Convention). MDAC recommends to work in tandem and cooperation withother relevant UN agencies such as UNICEF, UNESCO and UNDP, all of which are carrying outdisability-related programming.

• Why exclude adults? MDAC remains concerned that the declaration focuses on children. Thesituation for people with intellectual disabilities who are over eighteen years old remains dire –and often worse than for children – in many countries. MDAC’s position is that a holistic approach

needs to be taken by healthcare and other authorities to ensure that the right to health is providedwhereby a range of services, goods and facilities are available, accessible, acceptable and of good quality. This should apply to adults as it should for children. In many European countries,eighteen year olds with intellectual disabilities are moved from a children’s institution to adultinstitutions where they remain extremely vulnerable to physical, sexual and psycho-social traumaand abuse. They are also denied community living and often deprived of their legal capacity,denying them the opportunity to make decisions which other non-disabled adults take for granted.

Any European declaration which fails to address these issues will be failing the very children whoserights it seeks to be serving.




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European Union

Fundamental Rights Agency starts to address rights of persons with mental health problems and intellectualdisabilities

MDAC attended a consultation meeting organised by the European Union’s Fundamental Rights Agency (FRA)at its headquarters in Vienna. Around thirty NGO and academic participants had been invited to provideinput to the FRA’s project on the rights of persons with mental health problems and intellectual disabilities.

Fralex and the social research will be tendered out during 2010. During the meeting, MDAC urged the Agency to tackle an area which is central to the UN Convention on the Rights of Persons with Disabilitiesand one which governments across the European Union are systematically failing to address: namely thecontinued institutionalisation of hundreds of thousands of children and adults with disabilities.

http://fra.europa.eu/fraWebsite/home/home_en.htm

http://fra.europa.eu/fraWebsite/home/home_en.htm




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Hungary

Overcoming obstacles to implementation

As explained in our September 2009 newsletter , the Hungarian Parliament adopted the new Civil Code whichconsiderably changed the status of persons with disabilities in the field of legal capacity and which introducedsupported decision making. Since then, the President sent the bill back to Parliament, which made some minor amendments and voted on the bill again in November 2009.

Curiously, the Convention on the Rights of Persons with Disabilities (CRPD) did not play centre-stage in thegovernment’s reasoning on the Civil Code reform. This could be the reason why the government has never adopted an overall commitment to assure compliance of national legislation with international standards,

but opted instead for a sectoral approach, proceeding step-by-step in those areas where changes weremost called for.

While a general recognition of legal capacity of persons with mental disabilities is the first step to their equal participation in society, the abolition of other restrictive and discriminative legal provisions isequally indispensable. Through MDAC’s experiences with its own clients and through the implementationof advocacy activities, several obstacles have been identified in policy and in practice which continue tosegregate persons with disabilities and leave open the possibility for abuse of their rights. MDAC, together with organisations of persons with disabilities, is implementing a project in Hungary to advocate for thegovernment to tackle these hurdles, which we explain in this article.

Definition of disability

MDAC, as an organisation working for persons with psycho-social and intellectual disabilities, is well aware thatpersons with such problems are often forgotten, even compared to other groups of persons with disabilities.Central to this difficulty is that the main law on disability rights in Hungary, the “Law on the Rights and EqualOpportunities of Persons with Disabilities” (hereinafter “Disability Law”), is based on the medical modelof disability. The national legislation reflects the approach that disability is based on the person’s physicalor medical condition or impairment and does not question how society creates obstacles for persons withdisabilities. It views impairement as a problem that needs to be fixed by medical treatment or rehabilitation, or dealt with by excluding people with disabilities from society in large and remote residential institutions.

As such, the provisions of the Disability Law incorporate strong medical restrictions on those protected by it.Section 4 of the Disability Law defines a person living with a disability as “anyone who is, to a significant extent

or entirely, not in possession of sensory, in particular sight, hearing, locomotor, or intellectual functions,or who is substantially restricted in communication and is thereby placed at a permanent disadvantageregarding active participation in the life of society”. This definition does not refer to mental health or psycho-social problems at all, and thus excludes persons with these types of disabilities. Contrary to thisapproach, the CRPD, which is legally binding in Hungary, is clear that disability is a social construction,reiterating that “disability results from the interaction between persons with impairments and at titudinal andenvironmental barriers that hinders their full and effective participation in society on an equal basis withothers”, including persons with psycho-social disabilities.

In this sense, Hungarian law allows for discrimination and exclusion in decision-making organs for personswith psycho-social disabilities, and the law promoting equal opportunities, independent living and activeparticipation of persons with disabilities offers no protection of the rights of such persons.

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http://www.un.org/esa/socdev/enable/rights/convtexte.htm






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MDAC has long advocated for the abandonment of this definition for an inclusive and modern approachwhich encompasses the social approach to disability. Through this advocacy, we managed to gain the

support of several disabled persons organisations. The National Disability Council, a governmental organof political representatives and organisations of persons with disabilities, has been designated to take thelead and draft a proposal for a legislative amendment in this direction. However, although the need for legislative change is undisputed amongst the relevant stakeholders, it is linked with questions of a moresensitive political nature which makes achievement of this goal considerably more difficult.

Right to live in the community

The developments in the Civil Code, and in particular its provisions on legal capacity, have usefully calledinto question a number of legal provisions in the field of social and health care that deny the right to self-determination, autonomy, liberty and life in the community from persons with disabilities. MDAC’s main area

of concern in this field has been the lack of governmental commitment to establish and facilitate community-based social and health care services. The current policy and budgetary planning are clearly in favour of in-patient care, i.e. care dispensed within hospitals or institutions.

This policy continues to exclude and institutionalise persons with disabilities far from their home environmentand out of reach of any meaningful interaction with the community. As an example, the largest social careinstitution in Hungary has 750 beds. Its size is not the only alarming feature; it is destined for residents of Budapest, yet it is located on the Austrian border some 330 kilometres away from Budapest, making itimpossible for residents to continue to interact with their communities.

In autumn 2009, MDAC joined a coalition of civil society organisations that sent an open letter addressedto the Minister of Social Af fairs and asked why political commitments are not reflected in executive decisionsand why financial support continues to be distributed to large social care institutions – clearly in breachof European Union and international standards and obligations. For example, the government adopted aNational Disability Programme in 2006 with a strong emphasis on de-institutionalisation, but no measurablesteps have yet been taken to achieve this. As a result of this letter, MDAC was invited as an external expertto support the work of the Ministry of Social Affairs on de-institutionalisation and in November 2009 startedto participate in consultations with the Ministry.

Supported decision-making

The Civil Code introduced supported decision-making anda new approach to guardianship, heralding in importantchanges to legal capacity in Hungary. Like all pieces of

legislation which revolutionise systems of thinking as wellas policies and state and private institutions, the practicaleffects of such change will only appear when there is backingat the grassroots level to facilitate the implementation of theselegal instruments. MDAC advocates for the establishmentof professional bodies that would provide advice for supportpersons and could serve as an occasion to exchange experiencesand share knowledge about the practical aspects of the new laws.

The establishment of an institutional framework to support thesenew measures cannot be seen solely as a legislative or intellectualexercise. It must also be part of a wider change in a societal approach




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towards persons with disabilities, requiring the abolition of outdated and biased views. Therefore, MDACsupports wide-scale social dialogue relying on the experience and expertise in supported decision-making

which has already accumulated by grass-roots organisations.

At the same time, MDAC is engaged in cooperation with the Ministry of Social Affairs to frame themain guidelines of measures in the support of persons with disabilities, including implementation of themechanism of supported decision-making, such as the role of support persons, guardians, and judges inguardianship proceedings.

A way forward

Given the sweeping nature of law reform called for by international law, MDAC cannot and does not actalone. We rely on the help and expertise of our partner organisations which are in day-to-day contact

with persons with disabilities. In a way, the hardest part has arrived. Implementation of legal reform willnot happen by itself, and guidance by civil society organisations is imperative to ensure that nothing islost in the translation from rhetoric to reality. MDAC also envisages that during 2010 we will contributenot only to legislative changes but also to building the capacity of local disability organisations.

MDAC’s work in Hungary is supported by a grant from the EEA/EFTA Financial Mechanism, the HungarianEnvironmental Partnership Foundation and its partners. The work is also supported by a grant from the Trustfor Civil Society in Central and Eastern Europe.



Russia

First session on human rights and guardianship in Russiahosted by mental health professionals

The 2nd Eastern European Psychiatric Congress with the title “Collaboration for Mental Health” took placein Moscow on 27-30 October 2009. The congress brought together mental health professionals fromdifferent countries in Central and Eastern Europe to discuss cross-disciplinary issues, and for the first timein a mental health congress in Russia an entire plenary session on guardianship and human rights wasorganised. The session was co-sponsored by the Independent Psychiatric Association of Russia (IPAR) and

the Russian Psychiatric Society.

As par t of MDAC’s advocacy in Russia, MDAC legal monitor, Dimitri Bartenev, contributed to the congressdiscussion and made two presentations entitled “The system of legal incapacity and guardianship inRussia in the view of international standards”, and “Reforming the institution of legal incapacity in EasternEuropean countries”. The presentations described recent international developments in the area of human rights of people with mental disabilities, covering both soft law and legally-binding instruments.It was argued that interpretation of human rights treaties by international judicial bodies, in par ticular bythe European Court of Human Rights, has provided detailed guidance on what should be the minimumhuman rights standards in this area. Fur ther, a new paradigm for approaching legal capacity has beenestablished by the UN Convention on the Rights of People with Disabilities.

Although Russia has signed but not yet ratified the Convention, the call for a tailor-made approach toguardianship enshrined in this Convention is equally mandated by recent judgment against Russia of theEuropean Court of Human Rights in the Shtukaturov case and by the International Covenant of Civil andPolitical Rights (ICCPR) which is legally binding on Russia. In its Concluding Observations on Russia’s periodic report in October 2009, the ICCPR monitoring body, UN Human Rights Commit tee, made it clear that under the ICCPR, Russia is obliged to reform its outdated guardianship system to bring it in compliancewith human rights standards.

Recent legislative developments in other post-socialist countries with similar legal systems are of a particular importance for Russia in view of the debate initiated by MDAC on the need for guardianship reform. Newlegislative arrangements providing alternatives to plenary guardianship in three Central and Eastern Europeancountries (Estonia, the Czech Republic and Hungary) were discussed. It was agreed that the experiencesof those countries could be beneficial for Russian lawmakers, especially with regard to introducing new

instruments, such as advanced decisions, partial guardianship and supported decision-making as alternativesto current total guardianship measures.

The participants of the session stressed the need for reforming the outdated system of guardianship in Russia.MDAC believes that this event has triggered a discussion between mental health professionals and humanrights advocates in Russia to help improve lives of individuals deprived of their legal capacity. MDAC will beholding more roundtables in 2010 to focus on legislative steps required to ratify the UN Convention on theRights of Disabilities, and a separate roundtable on how to reform legal capacity laws.

MDAC’s work in Russia is supported by a grant from the Swedish Helsinki Committee and a grant from theUnited Kingdom Government’s Strategic Programme Fund.

projects

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http://www.npar.ru/




http://www.mdac.info/en/un-russia-must-reform-legal-capacity-laws









http://www.npar.ru/



Gábor Gombos Honoured

On 3 December 2009, the International Day of Persons with Disabilities,MDAC’s Senior Advocacy Officer Gábor Gombos was awarded theKnight’s Cross of the Order of Merit of the Republic of Hungary.

The Order Merit of the Republic of Hungary is one of the highest decorationsbestowed by the State. The different grades of the merit are presented topersons who have exemplary achievements in the field of culture, science,and art, or to those who have made considerable achievements in their

own field or profession. It is awarded by the President, on proposal fromthe Prime Minister or other Ministers, for promoting values of the Hungarian

state and upholding universal human values. Gábor was nominated for thisaward by Dr László Herczog, Minister of Social Affairs and Labour, in recognition

of his work in the field of human rights of persons with disabilities.

A former theoretical physicist and survivor of psychiatry, Gábor has become a world-renowned advocate for the rights of persons with psycho-social (mental health)disabilities. At MDAC, Gábor takes par t in international and domestic level advocacy,and has been one of the key actors in developing the United Nations Conventionon the Rights of Persons with Disabilities (CRPD) and ensuring its implementation inHungary. In particular, his work in Hungary gave momentum to the drafting of a new

Civil Code which incorporates many of the advances of the CRPD.

In his acceptance speech, Gábor said: “Persons with disabilities have been excludedfrom effective and equal participation across the globe. Legal incapacitation,deprivation of the right to vote, and segregation into custodial institutions are some of the ways how societiesexclude the world’s largest minority. The United Nations Convention on the Rights of Persons with Disabilitiescalls for a rethinking of social contracts which have failed to include people with disabilities. A meaningfulimplementation of the Convention will transform communities towards truer and more inclusive democracieswhere people with disabilities will contribute to the well-being of societies, through their being and doing,on an equal basis with others.”

Gábor concluded with a call for action: “When physical, environmental, attitudinal barriers and legal

disqualifications are removed; and support, reasonable accommodation and capacity-building are provided,people with and without disabilities can join their efforts to tackle local and global challenges, to make thisplanet a more just place for all.”

Gábor has chaired Hungary’s only network of user organisations (Hungarian Mental Health Interest Forum),and the European Network of (ex-)Users and Survivors of Psychiatry. Gábor also had the honour of beingselected to profile in the project Speak Truth to Power as one of the 51 leading human rights defendersaround the globe. He is a Fellow of Ashoka: the Global Association of Leading Social Entrepreneurs.

In 2008, Gábor spent six months working in India, where he worked to promote self-advocacy and grassrootsinvolvement in the implementation of UN Convention on the Rights of Persons with Disabilities across thecountry and across various sectors. Read his blog on his experiences in India here.

Gábor Gombos,MDAC’s Senior

Advocacy Officer

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people

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http://www.enusp.org/

http://www.speaktruth.org/defend/profiles/profile_46.asp

http://www.ashoka.org/node/2889

http://gabor-in-india.blogspot.com/

http://gabor-in-india.blogspot.com/

http://www.ashoka.org/node/2889

http://www.speaktruth.org/defend/profiles/profile_46.asp

http://www.enusp.org/



http://www.keh.hu/admin/data/file/2877_image0021.jpg



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Mental Disability Advocacy Center (MDAC) • Tel: +36 1 413 27 30 • Fax: +36 1 413 27 39Email: [email protected] • Website: www.mdac.info

mdac people

Board of TrusteesPeter Bartlett (Canada and UK) ChairClemens Huitink (the Netherlands) Treasurer

Robert Kushen (USA) Secretary Ivan Fiser (Serbia and UK)Milena Georgieva (Bulgaria)

Anna Lawson (UK)

StaffOliver Lewis Executive Director

Noémi Kiry Ambrus Senior Operations AdvisorNgila Bevan Legal Officer for the CRPDEszter Csilléry Office AdministratorIbolya Fabula Finance OfficerGábor Gombos Senior Advocacy Officer

Anna Hornyik Office Administrator

Victoria Lee Legal OfficerEyong Mbuen Policy and Advocacy OfficerSherzodbek Sharipov Junior Policy and Advocacy Officer

Vladislav Shayman Legal OfficerNatalia Simon Advocacy AssistantJitka Sinecká Policy and Advocacy OfficerKathryn Vandever Policy and Advocacy Officer

Legal monitors Aneta Genova Legal Monitor (Bulgaria) – hosted by the Bulgarian Helsinki CommitteeMaroš Matiaško and Zuzana Durajová Legal Monitors (Czech Republic) – hosted by the League of Human RightsEve Pilt Legal Monitor (Estonia) – hosted by the Estonian Patients Advocacy AssociationBoglárka Benkó Legal Monitor (Hungary) – hosted by MDAC

Dmitri Bartenev Senior Legal Monitor (Russia)

External consultantsScott Elliott Web Site ConsultantIstván Fenyvesi Publications Consultant Sarolta Kozma AccountantSándor Miklós Legal CounselGyörgy Péchy and Bognár Norbert IT ConsultantsPhotographs by www.radkin.com

Legal advisory network Peter Bartlett, Chair (UK and Canada)Paul Bowen (UK)Ira Burmin (USA)

Luke Clements (UK)Olivier De Schutter (Belgium)Yonko Grozev (Bulgaria)Lilla Farkas (Hungary)

Aart Hendriks (The Netherlands)Lovorka Kusan (Croatia)Robert Kushen (USA)

Anna Lawson (UK) Vesselina Vandova (Bulgaria)

This list is accurate as of 1 April 2010.These people also contributed to the issue: Yuri Marchenko, MDAC Legal Officer until 2009.



Contact us:

Mental Disability Advocacy Center

Telephone: +36 1 413 27 30

Fax: +36 1 413 27 39

Email: [email protected]

Website: www.mdac.info

MDAC’s Newsletters

are available online

at: www.mdac.info

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