MHE-event Mapping Exclusion at European Parliament

I have been to Brussels on 13-14 November 2012, for the launch-event of the report Mapping Exclusion by Mental Health Europe, MHE ( www.mhe-sme.org). The event took place in the European Parliament. I was invited as a representative for the European Network of Users and Survivors of Psychiatry, ENUSP (www.enusp.org)

Because of the European railway-strike I travelled to Brussels on Tuesday 13 November 2012, the day before the actual meeting. MHE took care of my accommodation. In the evening I met a friend who lives in Brussels, and we went to parking 58, to enjoy the view over the city of Brussels. That was nice, and afterwards I had a good rest.

At Wednesday 14 November 2012 at 9 AM right after breakfast, I first had an appointment with Tamas Verdes, a Hungarian film maker of a human rights-organization (HCLU, Hungarian Civil Liberties Union, http://tasz.hu/en ). MHE had arranged our contact. Tamas Verdes was making a documentary on the Right to live in the Community / de-institutionalization (art. 19 of UN CRPD) and he wanted to interview me as a user/survivor. We sat at the Place de Liberty (Vrijheidsplaats), located next to our hotel: Hotel du Congres. The interview went fine, and I mainly talked about my personal experiences.

Then the film makers and me sat in the lobby for a while, and after lunch, we went to the European Parliament in several taxis with the board members of Mental Health Europe, who had had a board meeting in the hotel during the morning.

At the European Parliament, we first had to register and go through security (which was no problem) and then we had a guide who took us to the right place. The guide was absolutely necessary, because it was even hard to find the 5th floor with the elevator, and the corridors and stairs were absolutely a maze. We arrived in a kind of lobby with a meeting room, where we had coffee and pastries.

At 14.00 everyone went inside the conference room because the meeting started. Stephanie had reserved a very good central seat for me next to her.

The opening was done by Member of European Parliament (MEP) Cecilia Wikstrom who welcomed us and introduced the program of the afternoon to us.
She told that no more European Structural Funds can be used for renovation or building of institutions, because institutions go against the UN CRPD. All persons have the right to live in the community (art 19, UN CRPD), to choose where they live, with who they live, and persons cannot be forced to live in a special facility.
In some countries (Sweden, Norway, UK) big institutions are being dismantled, and were initially replaced by smaller Group Homes, which are basically smaller institutions, where people cannot decide who they live with, and are still bound to set times of attention, which leaves them no choice but to be dependent. No matter how nice they look – institutions are not a home.
Alternatives to institutions are needed. Personal assistance is the only way to enable independent living. It’s necessary to organize a developed model, which isn’t charity but a human right.
Children need a family, but when there is a disability often the family needs support, but generally very often only choice is institutionalization, and the parent and child gets separated. This is not good. Children need a home to grow up together with a family.

Bob Grove (MHE) chaired the first session: the launch of the report Mapping Exclusion, by Mental Health Europe. He introduced the various speakers to us. He also underlined that the country-data in the MHE report needs to be checked, and if someone finds any mistake, he/she is asked to notify Mental Health Europe, because the research was limited to the member-organizations, but if anything is wrong or missing, they are willing to learn about it.

The first speaker was Lieve Fransen, Director for Social Policies, DG EMPL (DG means Directorate-General of the European Commission).
She first spoke about the UK, where they had had 40 years to learn what abuses take place in smaller Group Homes, that was equally bad as the big institutions, and they needed to be closed down. It’s important to listen to the users and to give them a voice.
The DG EMPL aims to be an active agent and to stimulate appropriate support. They are aware of the risks of institutionalization: poor daily living conditions, exclusive education, stigma, and lack of control of users over their own lives.
In terms of the economic crisis, persons with Mental Health problems and Intellectual Disability are the worst off, due to budget cuts and stricter criteria for receiving care.
It’s necessary to prevent the need for institutionalization. It’s better to anticipate and Prepare, rather than to Repair. This is integrated into the criteria for the European Social Funding. Criteria are based on:
• Enhancing rehabilitation (affordable, accessible and quality of care),
• Improving Quality of Life and education, based on a Life Long Learning,
• the UN CRPD,
• and thematic policy-lines, such as Poverty Reduction Strategies (residential care becomes community care

For effective implementation the mainstream focus is on families and communities, with themes as employment, social care, education, housing, all coherently coordinated on a local, regional, national and international level. EU has several instruments to stimulate this, such as:
• European Disability Strategy (2010-2020)
http://eur-lex.europa.eu/LexUriServ/LexUriServ.do?uri=COM:2010:0636:FIN:EN:PDF
• EU Employment and Social Policy
http://europa.eu/legislation_summaries/employment_and_social_policy/index_en.htm
• The European Union has ratified the UN Convention on the Rights of Persons with Disabilities (UN CRPD)
http://www.un.org/disabilities/
• European Pact for Mental Health and Wellbeing
http://ec.europa.eu/health/mental_health/docs/mhpact_en.pdf
• The Social Business Initiative of the European Commission
http://ec.europa.eu/internal_market/social_business/docs/201205-sbi-leaflet_en.pdf
• European Structural Funds (incl. European Social Fund)
http://ec.europa.eu/regional_policy/sources/docoffic/official/regulation/newregl0713_en.htm

The aspect of monitoring still needs attention, she concluded. Although the European Semester Poverty Monitor will also give some insights.

Then Agnes Turnpenny, researcher, introduced MHE’s report Mapping Exclusion. The research had been done from November 2011 to September 2012, and lead to a mile-stone document for mental Health Europe.
32 countries participated, and provided data on 5 key elements:
• Long-term/residential care
• Personal budgets
• Current mental health and reform strategy
• Involuntary treatment
• Guardianship and legal capacity
The MHE report Mapping Exclusion is a snapshot of the European situation, it may be a bit narrow viewed and contain possible errors. If you see anything that needs adjustment, please send feedback to Mental Health Europe (www.mhe-sme.org).

The MHE report shows that :
• Institutionalization, such as in psychiatric hospitals and social care institutions, is still widespread across Europe. Most admissions are short term/acute (with various length) but up to 40% of the persons in institutions live there for longer than 5 years.
• At least 125.000 persons in 14 countries live in social care institutions (however the data is still depending on interpretation whether Group Homes are counted as institution).
• In most countries institutionalization is the major dominating form of ‘care’. (and European Structural Funds are quite commonly abused for investment in infrastructure of institutions)
• Also in most countries there are plenary substitute decision making regimes.
• Involuntary treatment is common in institutions and growing in the community.

The summary of the report Mapping Exclusion will be translated in 22 languages.

Then Jan Jarab, European representative of the regional desk of UN OHCHR, told us that the UN CRPD implies that the issues of persons with disabilities are gaining increasing attention and are becoming a priority in European policies.

Jan Jarab mentioned a lot of reference documents, such as:
• Forgotten Europeans, Forgotten Rights , the human rights of persons placed in institutions:
http://www.unicef.org/ceecis/Forgotten_Europeans_Final_webversion.pdf
• ECCL-report “wasted opportunity – wasted time, wasted money, wasted lives” about European Structural Funds being used to maintain social exclusion in Central and Eastern Europe.
http://www.community-living.info/documents/ECCL-StructuralFundsReport-final-WEB.pdf
• Report of the Ad Hoc Expert Group on the Transition from Institutional to Community-based Care
http://ec.europa.eu/social/main.jsp?langId=en&catId=89&newsId=614&furtherNews=yes
• Getting a life – Living Independently and Being Included in the Community
http://www.europe.ohchr.org/Documents/Publications/Getting_a_Life.pdf

You can choose to be the solution, or become part of the problem. So it is necessary to put regulations of de-institutionalization in the criteria of European Structural Funds. Member States and the EU would violate the UN CRPD article 19 if they would fund institutions and segregated living. The UN CRPD is the first UN treaty that was ratified by the European Union as a whole, so this should be given adequate substance.

In many countries the choice is either residential care or nothing. Community-based care needs to be put in place. The European Commission needs to show leadership and invest in sustainable support, because the budgets cuts may lead to a wave of RE-institutionalization of the most vulnerable.

Also coherent jurisprudence is being developed, such as the UN CRPD Committee’s Concluding Observations on country reviews (http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session6.aspx )

The UN CRPD Committee concluded on 2 European countries so far:
On Spain ( http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session6.aspx )
• (point 33,34): regarding art 12 of UNCRPD, Legal Capacity: The CRPD Committee recommends that Spain reviews their laws and abolish those that allow for guardianship and substitute decision making, and replace these by laws based on supported decision making, which respects the person’s autonomy, will and preferences .
• (point 34,35): regarding art 14 of UNCRPD, Right to Liberty: The CRPD Committee concludes that the Spanish legal system constituted a trend of institutionalization of persons with Mental Health-/ Intellectual Disabilities and only has ex-facto safeguards.
o The Committee takes note of the legal regime allowing the institutionalization of persons with disabilities, including persons with intellectual and psychosocial disabilities (“mental illness”). It is concerned at the reported trend of resorting to urgent measures of institutionalization which contain only ex post facto safeguards for the affected individuals. It is equally concerned at the reported abuse of persons with disabilities who are institutionalized in residential centres or psychiatric hospitals.
o It recommends that Spain reviews its laws that allow for the deprivation of liberty on the basis of disability, including mental, psychosocial or intellectual disabilities; repeal provisions that authorize involuntary internment linked to an apparent or diagnosed disability; and adopt measures to ensure that health-care services, including all mental-health-care services, are based on the informed consent of the person concerned.
• (point 39 - 42): regarding art. 19 of UNCRPD , Living in the Community:
o The CRPD Committee is concerned at the lack of resources and services to guarantee the right to live independently and to be included in the community, in particular in rural areas. It is further concerned that the choice of residence of persons with disabilities is limited by the availability of the necessary services, and that those living in residential institutions are reported to have no alternative to institutionalization. Finally, the Committee is concerned about linking eligibility of social services to a specific grade of disability.
o (point 40) The Committee encourages the State party to ensure that an adequate level of funding is made available to effectively enable persons with disabilities: to enjoy the freedom to choose their residence on an equal basis with others; to access a full range of in-home, residential and other community services for daily life, including personal assistance; and to so enjoy reasonable accommodation so as to better integrate into their communities.
o (point 42) The Committee encourages the State party to expand resources for personal assistants to all persons with disabilities in accordance with their requirements.
CRPD Concluding Observations on Spain: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session6.aspx


On Hungary (http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session8.aspx )
• (point 26): regarding art 12 of UN CRPD, Legal Capacity: The CRPD Committee recommends that Hungary use effectively the current review process of its Civil Code and related laws to take immediate steps to derogate guardianship in order to move from substitute decision-making to supported decision-making, which respects the person’s autonomy, will and preferences and is in full conformity with article 12 of the Convention, including with respect to the individual's right, on their own, to give and withdraw informed consent for medical treatment, to access justice, to vote, to marry, to work, and to choose their place of residence. The Committee further recommends to provide training, in consultation and cooperation with persons with disabilities and their representative organizations, at the national, regional and local levels for all actors, including civil servants, judges, and social workers on the recognition of the legal capacity of persons with disabilities and on mechanisms of supported decision-making.
• (point 27,28): regarding art 14 of UN CRPD, Right to Liberty: The CRPD Committee is
o concerned about the situation faced by persons under guardianship, where the decision of institutional care is made by the guardian instead of the person him/herself, and guardians are authorised to give consent to mental health care services on behalf of their ward. The Committee further regrets that disability, in some cases, can be the ground for detention.
o The Committee recommends that the State party review provisions in legislation that allow for the deprivation of liberty on the basis of disability, including mental, psychosocial or intellectual disabilities, and adopt measures to ensure that health care services, including all mental health care services, are based on the free and informed consent of the person concerned.
• (point 33,34,35): regarding art 19 of UN CRPD, Right to live in the Community:
o The CRPD Committee takes note that the State party has recognized the necessity for the replacement of large social institutions for persons with disabilities in community-based settings (deinstitutionalisation). The Committee, however, notes with concern that the State party has set a 30 year timeframe for its plan for deinstitutionalisation. It is furthermore concerned that the State party dedicated disproportionally large resources, including regional EU funds, to reconstruction of large institutions, which will lead to continued segregation in comparison to sufficient resources dedicated to setting up of community-based support service networks. The Committee is concerned that the State party fails to provide sufficient and adequate support services in local communities that would enable persons with disabilities to live independently outside the residential institutions settings.
o The Committee calls upon the State party to ensure that an adequate level of funding is made available to effectively enable persons with disabilities to: enjoy the freedom to choose their residence on an equal basis with others; access a full range of in-home, residential and other community services for daily life, including personal assistance; and enjoy reasonable accommodation with a view to supporting their inclusion in their local communities.
o The CRPD Committee further calls upon the State party to re-examine the allocation of funds, including the regional funds obtained from the EU, dedicated to the provision of support services for persons with disabilities, and the structure and functioning of the small community living centres, and ensure the full compliance with the provisions of article 19 of the Convention.
• It’s for the first time a UN document directly links to European Funding (point 34,35).
CRPD Concluding Observations on Hungary: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Session8.aspx

See all of the UN CRPD Committee’s work on country reviews grouped in the CRPD-sessions at: http://www.ohchr.org/EN/HRBodies/CRPD/Pages/Sessions.aspx

Also in European Court on Human Rights jurisprudence is being developed, in the line of the UN Convention on the Right of Persons with Disabilities, which is a challenge, because the European Court has a very narrow legal text to work with (the European Convention leaves hardly any room)
• 33 years ago the case of Winterwerp v Netherlands (http://www.bailii.org/eu/cases/ECHR/1979/4.html ) lead the basis for current mental health care system, by claiming that admission cannot be done at random or based on a hunch, but needed to be based on a diagnosis by a doctor. Since then mental health care was perceived as mainly a medical domain, hardly accessible for lawyers.
• Last month a new decision was made by the European Court of Human Rights, in the case of Pleso v Hungary (http://www.law.harvard.edu/news/2012/11/related-content/case_of_pleso_v_hungary.pdf ) which means that a diagnosis on itself cannot be the reason for institutionalization, and persons “have the right to be ill” and have a choice, while taking balance with society into account. This is a real step forward.

Another positive thing that happened very recently is that Hungary is no longer criminalizing homelessness, because it was found unconstitutional.
We don’t know when the European Union, as a ratifying party, will be reviewed by the UN CRPD Committee.

It was a pity hat Jan Jarab had to leave directly after his interesting speech.
During the meeting some more of the European officials had to go. We just have to accept that they are very busy, but it feels like the meeting is left with a gap then. Anyway, we continued.

Then Jurgen Scheftlein, of DG Sanco - Health and Consumers (DG means Directorate-General of the European Commission) spoke about some examples joint actions between States and EU Health program, and thematic events to build awareness. There is an outstanding invitation to Member States to come up with social models.

Then there was room for Questions and Answers on this first session. There were a few questions, mainly about how to monitor the use of European Funding (reporting, checking, quality frameworks, standards and criteria, abuse, whose responsibility, research tools?). And there were Questions on the ways of sanctioning after abuse of European Funding.


Then the second session started about: Using Structural Funds to support Independent Living of persons with disabilities. This session was chaired by Ines Bullic (ENUIL – ECCL)

First we heard a personal testimony of Linda and her father Bjorn Osterholm from Finland. Linda lives with an intellectual disability and was given no other choice but to live in an institution 170 kilometres away from her father, despite the fact that she owns her own house. Living in a group home or institution isn’t pleasant for Linda, because it is chaotic and restless there, and she has no relations. She has only her own room and the rest is shared. Activities are only there during the day, so the evenings are really only watching tv, because there is nobody to take her out or do something. Visits to and from her family are very hard, due to the distance. She has no individual life there, only a group life.

Then Judith Klein of OSI (Open Society Institute Mental Health Initiative) spoke a bit more about the proven misuse of tax money of European Social Funds in some Central-European countries, to facilitate social exclusion, which is illegal.
OSI has launched a petition to the European Parliament to stop the misuse of European Funds for renovation or building institutions. The UN CRPD creates a moment for concrete action and political pressure, and there is a broad support for de-institutionalization at the EU-level.

Also she mentioned another OSI report as a reference:
• The European Union and the Right to Community Living
http://www.unhcr.org/refworld/type,REGIONALREPORT,,,4fbcc96d2,0.html

THE PETITION of OSI regarding: Stopping misuse of European Funding for facilitating exclusion, and instead , support inclusion: https://www.soros.org/sites/default/files/petition-eu-parliament-20121018.pdf

Then Kapka Panayotova, from ENIL-ECCL Bulgaria, told about experiences with deinstitutionalization in Bulgaria, where large child-institutions were dismantled. As a default-solution, children were put in smaller group homes. Then some qualitative research was done, amongst a very diverse group of stakeholders, including some children who spend their lives in institutions. It appeared that the children didn’t like the new smaller house, because they had no relationships there, and they missed the old place/ the old people around them.
But the staff, the owners, government and developers were positive, because they could now get a better image and make a 40-70% profit by getting many European funds for regional developments (rural development, human resources development, deinstitutionalization projects). But the children gained nothing in their quality of life, and were basically re-institutionalized under the name of de-institutionalization. This lesson needs to be learned.

The fact that the children missed the old institution struck me, and I don’t mean to judge their experiences, but it brought back memories.
It’s really weird, but even when I was secluded full time for months and months at the child ward, I cried and felt abandoned when I was transferred to an adult ward. And I was treated the same there, and I also cried when I was transferred again. Afterwards I’m really glad I got away from that place, but back then it was still my life, the place where I knew how to survive. Even a rotten place can feel some kind of safe. And back then, I couldn’t see a life for me outside of the walls, it was said to be impossible because of the way that I was, and I believed that. I had no hope, and others had no hope for me. I remember that regarding the cells, I felt more safe in the seclusion cell where I spent most time in, although I didn’t like it there. After time it still becomes a kind of weird comfort zone. Afterwards I’m so glad I got out of there, but back then being transferred felt like loss and abandonment. It’s really a strange mechanism.
So that’s why the remark of the lady from Bulgaria struck me so much. I didn’t mention this in the meeting. I just continued listening to the research results. It’s a weird mechanism, that should be taken into account, but I don’t mean to diminish the research results, because I do believe that in Bulgaria, the Group Homes may be of very poor quality, leading to deep suffering of the children. It just adds up, the re-institutionalizing of children under the name of de-institutionalization is a real tragedy, in many ways.
The Bulgarian experience with de-institutionalization shows that leadership, monitoring and investments in support and community care are needed, to achieve the goals of community living.

As a last speaker, Cecilia Blanck of JAG Sweden shared with us a research done by JAG Sweden on the cost-effectiveness of personal assistance versus institutional care and so-called “patch-work care” (when several carers on several themes are involved in someone’s life). It must be said that comparing the costs also highly depends on the definitions and scope.
But the research showed clearly that the same budget as for institutionalization (2401 euro a week) could be used for personal assistance for persons with severe disabilities enabling them to live in the community and get individual attention instead of “group attention”. By personal assistance the personal quality of care is being increased as well as the quality of life, by enabling much more flexibility and possibilities for individual needs.
In plain words: it’s more efficient to arrange personal assistance, and offer care and support at the place where the user is, instead of placing the user inside care.
• JAG-report: The price of Freedom of Choice, Self-Determination and Integrity
http://w1.jag.se/kunskap/The%20price%20of.pdf

The general conclusion of the seminar was that de-institutionalization about ambition to care for human rights, and how to translate that into action. If we want to end exclusion, and no more people living in institutions. Then service becomes an issue, and living independently can no longer be connected to houses. Care has to be everywhere, otherwise the user can’t leave the house.

Then a discussion took place on several themes, such as how to change a mindset of a community, and relations with democracy, which cannot really be exported, but needs to grow and be learned by a community. Physical structures (institutions) however contribute to the level of discrimination, stigma and lack of value.

Then I raised two questions,
1. There should be another type of evidence in our evidence-based world, because social models have other values than the old-fashioned mostly materialistic interventions, such as medicin and technology. Can the EU use its tools to steer onto social models, including by requesting other types of evidence?
I didn’t really get a direct answer, but in following questions this remark echoed, such as when persons expressed a need for new indicators and criteria, and a definition of ‘mental illness’.

My second question was:
2. Community Treatment-Orders (CTO: forced outpatient treatment) is a threat to the success of de-institutionalization, because it leads to stigma when these human rights violation occur outside in the open, on the streets, by public officials. Community Treatment Orders are often linked to de-institutionalization, but need to be condemned. Can the EU secure that no European Funds will be used for this false-de-institutionalization.
Again I didn’t get a direct answer, but they will ask and it felt like my remark had come through. It was mentioned that for the next term of European Structural Funds the UN CRPD will no longer be mentioned in the criteria, but as participants we assumed that it would be still be an implicit criterion, because it is a binding treaty.
Also the next FRA-report was announced and said to have more data on this.
(FRA, European Fundamental Rights Agency http://fra.europa.eu/en )

It had been a very intensive meeting, and the things I had heard about de-institutionalization and development of European policies sounded quite positive to me.

After the meeting I talked to a few people, and some persons came to thank me for my contributions and participation. That was really great. And then we moved to the lobby to do some after-talk.

I was really pleased when someone (anonymous) said that the contribution of the Netherlands (by GGZ Nederland) into the European MHE-report was quite “slimy”, and that there are not enough data to draw a conclusion, so the country is left grey in colour-coding. Somehow I find it supportive when other organizations recognize the short-comings and “slimy-ness” of my country. It’s obvious on this European map of Mental Health Europe, (find an image of the MHE-map below this article). Untransparency (a grey code) isn’t a good sign. I guess we all know that. To me it’s confirmative evidence. (Also on the map of ratifications of the UN CRPD the Netherlands is behind compared to the rest of Europe, who all ratified the UN CRPD. (http://www.un.org/disabilities/documents/maps/enablemap.jpg ).
To me it was positive that MHE had found out about the Dutch slimy-ness and gave it code grey. Also many countries have code red, which also isn’t good.

When I had to go, I was lucky that someone else was also leaving, who knew the way out of the Parliament building (she had done more projects there), and we chatted about child rights on our way out. I was really positively loaded. Everything had gone very well that day.

After the meeting I was picked up by a friend, who drove me back to the Netherlands by car. I really felt good for all I did today. I had a good interview, and a good participation at the event at European Parliament, and I had the opportunity to raise fundamental questions on the system, and to promote a social approach. I was proud to have been to the European Parliament, and shake things up a little, including with my colourful Mohawk in the grey-suit world. And I had had a taxi-ride. I felt absolutely great, like a star. It kicked ass to have done this all :)