Again learned a lot.

I am really happy to be participating at this course, because I’m learning so much here. Before this course I really couldn’t understand why the system was not making sense (psychiatrists saying cells are treatment, lawyers allowing for such practices and so on). I really saw no logic in it, and it hurts so many people, that had taken away all my trust as well. But now I learned which litigation cases have led to this situation. So at least now I understand where it comes from. And now I see that the CRPD will really bring change, because now new jurisprudence is being made, based on the new standards (CRPD standards). And it feels good to understand the world a bit more. It is really empowering. I will use this information in the next meeting with the Ministry of Health (at the 9th of August, about my alternative model in the context of the new draft law on “forced treatments”). I feel empowered. It is really good.

Anyway, this is what happened yesterday, Friday 20 July 2012.
I overslept despite 3 alarms I had set, and I missed the first session at the summerschool, which was the debriefing of the site visit to the Ray of Hope-institution. I walked in at the end of the session, just in time for the practicalities about the reporting assignment. But I missed the discussion, which I really regretted. So I asked around to be updated, and I found out that there had been some discussion about alternatives (will it be good to just move the people out of the institution, or are they then at risk of being treated in the same way, in smaller settings, or even at home?) and about the post at the MDAC-facebook (is it fair to draw conclusions based on a 2 hour visit, and to state that parents ‘dumped’ their kids there? It is more complicated that that, and ‘dumping’ doesn’t sound very friendly). I regret that I missed that discussion, but my body claimed the sleep it needed after the intense day of the site visit and talking to persons with psychosocial disabilities.

The second session was done by Oliver Lewis, about The Right to Live in the Community First we discussed and addressed which articles of the UN CRPD were relevant and what it means.
The preamble (n) mentions the importance of individual autonomy, independence and the freedom to make own choices. Also art. 3 (general principles) mentions autonomy, freedom of choices and independence of persons. The text of Art 19. Living independently and being included in the community says that “States Parties shall take effective and appropriate measures to facilitate full enjoyment of this right and full inclusion and participation in the community, including to ensure”… followed by a list of things (a t/m c). So the UN CRPD doesn’t give a definition of ‘living independently and/or being included in the community’. But art. 19 (b) shows that living independently, and full inclusion and participation in the community are opposite to isolation and segregation from the community.
Isolation and segregation can happen anywhere, also in the community, for example when there are no provisions for participation by persons with disabilities (for example blind persons, persons with autism, persons in wheelchairs can still be isolated and segregated while being present in the community). This is a failure to provide reasonable accommodation, which is discrimination (see art. 2 and 5).
It is positive that the UN CRPD does not mention anything on institutions or de-institutionalization, but instead focuses on capacity, participation and inclusion. Dismantling institutions may smell like a risk, but there is also huge risk linked to institutionalization. Segregation of persons with disabilities leads to their broader marginalisation (facing dehumanization, helplessness, powerlessness, incapability’s and exclusion) and this ultimately advances discrimination and abuse against them.

Art. 16 Freedom from exploitation, violence and abuse comprises a continuous obligation (not progressive realization) where State Parties shall take all appropriate measures to protect persons from all forms of exploitation, violence and abuse.

Oliver showed us a book of Erving Goffman, 1963: Stigma: Notes on the Management of Spoiled Identity. This book addresses the concept of “total institutions”. Goffman defines total institutions as social arrangements that regulate according to one rational plan and under one roof, all spheres of individuals' lives—working, playing, eating and sleeping. A principal social arrangement in a present community is that the human being tends to work, play and sleep in different places with different persons under different authorities and without any overarching plan. As Goffman states, the main characteristic of total institutions can be described as a disruption of the barriers usually separating these three spheres of life. Firstly, all aspects of life are conducted in the same place and under the same central authority. Secondly, each phase of the participant's daily activity is conducted in the immediate attendance of a large group of others, all of whom are treated similarly and required to do the same things jointly. Therefore, any autonomy or freedom to pursue one's own interests, make one's own choices or associate with the persons of one's own choosing is denied. Thirdly, all phases of the daily activities are closely planned, with one activity leading into the next at a prearranged time. This succession of activities is inflexibly imposed upon inmates from above. Finally, the different forced activities are brought together into an overall plan, presumably designated for accomplishing the objections of the institution.

In the era of deinstitutionalization, governments tend to avoid using the word institution, and instead replace it with other words like “living centres” and so on. The international laws and policies (such as CRC, CRPD, OHCHR) are all stating that persons should live in the community.
The general obligation under art. 4.1.b. says that “all appropriate measures shall be taken to modify or abolish existing laws, regulations, customs and practices that constitute discrimination against persons with disabilities.” Article 4.1.a says that measures should be taken to implement the rights of the UN CRPD.

Article 26 Habilitation and rehabilitation mentions that the focus should be based on an assessment of individual needs and strengths, supporting participation and inclusion, and start at the earliest possible stage, to attain and maintain independence (so it is about advancing capabilities).
Furthermore is relevant: Art 28 which mentions adequate standard of living and social protection (incl. adequate housing), Art 23 about Respect for home and family, art 27 Work and Employment, art 24 on Education art 25 on Health (incl. free, informed consent on services) and of course art. 12 Equality before the law.
So article 19 “living in the community” is interconnected to many other articles.

Although I had some flashbacks during the day because of the visit to the institution, I managed to stay quite focussed so that didn’t really prevent me from getting the information. In fact, everybody was quite tired and full of information, so there wasn’t so much of a lively discussion anymore.

After the lunch Lycette Nelson told us about Litigating the Right to Live in the Community. She told us about the case of Olmstead vs. US, which had 2 main important outcomes, which are: 1. institutionalization gives stigma as it is based on an assumption that a person is incapable or unworthy to live in the community. 2. confinement diminishes all daily activities (the person had to give up all liberty for receiving mental health care services, which is unlike medical care services). With reasonable accommodation this could have been avoided. The Olmstead-case enforces that segregation is discrimination, and services have to be provided in the most integrated way. This means that alternatives in the form of community based treatments need to be available, such as for example a contract-based case manager instead of a guardian, or assertive community treatment (ACT) instead of institutionalization.

The CRPD mentions that reasonable accommodation should be provided without an undue burden, which means that this should not be provided at the cost of other persons’ services, but be balanced (and institutionalization is often more expensive than community based services, for example separate schools are more expensive than additional resources in general schools). But the rights springing from article 19 are Civil-Political rights and not subject to progressive realization, because they are based in equality and non-discrimination (art 2 and 5). The case of Olmstead states that the loss of rights in mental health institutions is unequal compared to others).

Then there is also the case of Stanev vs Bulgaria (2012- European Court of Human Rights). Stanev was placed in a remote, neglected social care home in Bulgaria by his guardian, and according to national Bulgarian law: If the guardian agrees, the institutionalization is considered “voluntary”. The European Court found this a liberty-issue, stating that having a guardian doesn’t mean an inability to consent, and there was no consent. A need for assistance does not justify deprivation of liberty, and the person should have as much capacity as possible, which means services should be maximally in line with the person’s wishes. If there is no consent, it is a suspected case of deprivation of liberty. For mental health care there are laws in Bulgaria, but for social care homes there were no laws. So in any proceedings a judge needs to assess what kind of services are needed. So there is a right to comparison, which means there are experts needed to assess a person’s needs and who have an overview of services.

In the discussion came up that ‘reasonable accommodation’ should be interpreted as “accommodation”, which gives a stronger reflection of the equality principles (non-exclusive) and the obligatory realization (civil-political rights are not subject to progressive realization). Bulgaria also pleaded that they were poor, but that is no excuse to do nothing. We know that saddening institutions like the Ray of Hope cost 25.000 euro a year per person (so in 3 years you could everyone a house). It is a relocation of budget. Immediate care is obliged under the right to Health.

There are parts of the African Charter on Human and People’s Rights (art 16) and parts in the European Social Charter (art 15) that can be used.

As a follow up on the case of Stanev vs Bulgaria, MDAC is now working on the case of Cervenka and on the case of Stankov. This is strategic litigation by which they hope to ensure the duty of States to prevent institutionalization and put other services in place.
MDAC is also working on the issue of compensation for people who lost lives and opportunities by the mental health care system, which would probably be a very strong motivation for governments to make a change.

The final session of the day was used for Preparation for Moot Court. We got some instructions on the fictional case of “Alma” and then worked in smaller groups to prepare for the Moot Court, which will be next week at the end of the course.

After that we had dinner on a boat called Columbus on the Danube. It was really nice and delicious, and in the end we were sitting in one big circle and it was really a great atmosphere. I really enjoyed this social event.

**
Today, Saturday 21 July 2012, we had a day off (no organized social events), and we went into town with exactly half of the class (10 persons). First we went to a big indoor market, and then did some sightseeing. The weather was beautiful, and it was really nice to be all together. I needed to get myself some toothpaste and postcards, so I left the group when they went to the Castle up the hill (in Buda) because I had already been there at Wednesday. I bought my stuff and then I decided to go to the skatepark that I pass by every day. I didn’t bring my skates with me to Budapest (I really regretted that today), but I just liked to be there, and I took some nice pictures. At some point there came a freshly married couple, who asked some inline skaters to jump over them. I really loved that, partly because it resembled to the skate area where I always used to hang out: the City Square in Eindhoven, where many freshly married couples came out of the City hall, and many of them also liked to take pictures with skaters in it. It was really nice to witness this ‘tradition’ in Budapest city. It still makes me smile.
After that I went back to the Residence centre, actually it was still quite early in the evening, but my feet hurt from walking, and I needed to do some homework.

Tomorrow we will go on a boat trip to Szentendre, which is said to be a beautiful town. I’m looking forward to that :)