Paris conference on CRPD article 12 - Day 1

This blog report on the “Paris conference” comes a little bit later than usual, because I was really exhausted after 7 days of meetings, and I needed to do some other tasks as well. But now here is my report of this interesting event, with a lot of information during the 3 days of the conference.

On Tuesday evening 27 October 2015 I travelled from Brussels to Paris for a 3 day international conference with a long title: “Guaranteeing persons in vulnerable situation the capacity to enjoy and exercise their civil and political rights / The United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) – focus on article 12: A legal turning point in care and support relationships?”

The conference took place from 28 to 30 October 2015 at INALCO University in Paris. I had been looking forward to this conference, because I liked the programme, which brought together a broad variety of speakers and audience, including law professors, UN experts, (ex-) users and survivors , family organizations, sociologists, philosophers, psychiatrists, caregivers, judges, guardians, students, national human rights defenders. The focus of the conference was on CRPD article 12 (legal capacity), what does it mean, and how can it be implemented in French law, policy and practice. There were several persons on the programme that I knew well (Gabor Gombos, Maths Jesperson, Amita Dhanda, Stephanie), and they all do great work in the advocacy for the rights of persons with psychosocial disabilities in line with the UN CRPD. It was really nice to see each other again.

DAY 1

On Wednesday morning 28 October 2015, before the conference started, all speakers were invited to have a lunch with the conference organizers starting at 11 AM. It was nice to meet the international experts, and to see the diversity of backgrounds at this multidisciplinary conference.

After lunch, at 2 PM the conference started with the Opening session.
First Patrick Gohet (French National Human Rights Defender) explained the work and structure of the relatively new French National Human Rights Institution. He also explained a bit about the French situation. The CRPD has been ratified by France in 2011, but the French National Human Rights Defenders have concerns: 1. The French government did not submit a report to the UN CRPD Committee, and omits their obligations to begin with. 2. The paradigm shift is not yet happening and the tradition and culture of “protection” is not replaced by a focus on autonomy. 3. The legal and institutional systems need to be changed from substitute to supported decision-making. And 4. It needs to be identified what is help and what is the role of persons in supported decision making.

Then Denys Robiliard (Member of French Parliament) spoke about challenges in the process of law making. Parliamentarians may not be experts on the CRPD, guardianship or mental health, so this can go wrong. The media enforces stigma and calls for the lock-up of persons with psychosocial disabilities, and many people are not concerned about the human rights of persons with mental/psychosocial disabilities, which needs to change. To identify the way forward, the input of experts is needed. He also mentioned that he had studied law, and that he had read the UN CRPD, the General Comments, and the Individual Complaint under the Optional Protocol of a person with autism in an institution in Lyon, France. It had become clear to him that the French laws do not comply with the UN CRPD. He was concerned that the state not yet understands that a NEW system is needed, and he was concerned about the abolition of guardianship, which could be a problem in France. CRPD article 12, 14, 15, 17 imply that states need to abolish laws on forced hospitalization and forced treatment, so the French laws don’t comply, and the 2007 Law on Guardianship and Protective Measures and the 2011 Law on Treatment Without Consent need to be changed. And all health care needs to be provided with consent, also psychiatry. The principle of forced interventions being a “last resort” needs to be reviewed in the light of the UN CRPD. He concluded by saying: Laws need to take us further to secure human rights.
This was an interesting start of the conference.

Then Mrs. Annelisa Cotone (policy officer, European Commission, DG for Employment, Social Affairs and Inclusion) explained the European context and mentioned the recent EU review process before the UN CRPD Committee, the reports produced by EU Fundamental Rights Agency, and the focus on non-discrimination in the labour market. She also mentioned that the EU has no power to legislate on legal capacity, and they can only support Member States in their search for alternatives and best practices, for which they have now made a website.
I had heard this presentation before (and the argument of “no EU-power to legislate” was really annoying me once more), so for me this certainly was not the most inspiring speech of the day. But it was good that the European Commission was represented, which showed European engagement in regards to developing national implementation of article 12.

The next speaker was Mr. Damian Tatic, UN CRPD Committee member, who participated by video-link. First, he congratulated us with being part of this conference on the most revolutionary part of the UN Convention on the Rights of Persons with Disabilities (UN CRPD). Then he elaborated on the United Nations mechanism, which consists of Constructive Dialogues, Concluding Observations, General Comments and the option for Individual Complaints under the Optional Protocol. In the light of article 12, he explained that in the so-called western world, as a general rule, all persons have rights and also have the capacity to exercise these rights, but in general, persons with psychosocial or intellectual disabilities are the exceptions, and can be subjected to guardianship and have their decision-making power taken away from them. They cannot choose where to live, to marry, to have children, to vote, or what treatment they are given. The CRPD calls for a change: guardianship needs to be abolished and the focus needs to shift to supporting persons to exercise their full rights. Persons with disabilities should not be forced to undergo treatment. And also in the case of crime, they should be treated equal as others, without discrimination. And persons with a high level of support needs need to be protected against manipulation, on which some good practices have been developed by Inclusion International and Inclusion Europe.

The second block gave an introduction to the social and legal issues involved in the implementation of article 12.
First there was a word from the organizers, Mr. Benoit Eyraud (sociologist, University of Lyon 2, Max Weber Center) and Mrs. Anne Saris,(professor of law, University of Quebec in Montreal). They presented a virtual situation of a person who is in a vulnerable situation, which showed how a person’s autonomy can be questioned when there is no support. We can all be vulnerable, especially in situations of poverty, at elderly age or otherwise vulnerable. This conference seeks to debate from a multidisciplinary angle with all stakeholders on the meaning of support. They gave an introduction to the social and legal issues involved in the implementation of article 12, and gave a good overview of the key questions faced by the various stakeholders in this debate. Reflecting on the virtual case: What to do? How to assess a personal need for help or support? Is it relevant to screen mental capacities? How? Is it possible? Were rights respected in this case? Was she abused? Safeguards?
800.000 persons in France are under guardianship and face involuntary treatment and involuntary institutionalization. They are exempted from the capacity to act. All people need to have the same rights, even if they have a disability. The rights of persons with psychosocial disabilities need to be respected, abuse needs to be prevented, their will needs to be respected. There needs to be support for the exercise of legal capacity and we need to look closely on how to realize that, to effectuate this turning point. How to ensure that we all have legal capacity, unbiased? What type of support can be universal? How to recognize all rights for all people?
I was quite impressed by this proper list of questions, which seemed to be an inventory reflecting the concerns of diverse stakeholders in the debate. To address these concerns out loud really opened up for a broad debate, not leaving out the most sensitive parts which cause discussion, but actually putting these on the agenda. I liked that approach. I had some eye contacts with my peers and allies in the room, and we knew we would challenge the old paradigm all together.

Then there was a very interesting session on “experience-based feedback to put article 12 on the agenda. Mr. Gabor Gombos (Ex-user, former member of the UN CRPD Committee and Adjunct Professor of Law, Galway and Nalsar University of Law) was the first speaker. He shared with us his personal life journey, which was actually a heartbreaking testimony of how he was confronted with the devastating effects of forced treatments on his mother at a young age. The forced ECT had caused memory loss and had completely changed her, almost unrecognizable. She eventually died by a secret drug trial in a psychiatric institution in Hungary. Gabor Gombos himself also experienced psychiatry in Hungary. His experiences eventually moved him to join an NGO which was pushing for alternatives to total institution based care, and from there he joined a fully user-driven organization in 1995.
Gabor Gombos explained how the debate on guardianship and legal capacity evolved. It was first thought that the abuse of the system was the problem. But it was then found by empirical research that actually the guardianship itself was the problem, which equals “civil death” since the person loses his/her agency over their own life. In many European countries persons under guardianship cannot file complaints, and only the guardian can do so, a Kafkaesque situation. Also in for example medical situations the expressions of a person under guardianship or are often put aside, such as not believing the symptoms of a stroke. Questioning or depriving a person’s legal capacity is only making the person more vulnerable, and a person’s legal capacity is basically put into question when a person is already vulnerable. So the wish to protect a person by guardianship, results in a situation where the person concerned only becomes more vulnerable and invisible, with no ability to exercise rights themselves, and facing more barriers in life and society.
The CRPD shifts the focus, away from the traditional models that talk about “impairment” of persons, to a human rights based model that focusses on eliminating barriers for the equal enjoyment of all rights by all persons with all types of disabilities, including mental health problems. The legal incapacitation of persons with psychosocial and/or intellectual disabilities is a barrier to the full enjoyment of human rights on an equal basis with others, and the mental health laws that allow for guardianship are a barrier too. The World Network of Users and Survivors of Psychiatry (WNUSP) and Inclusion International (self-advocates and family of persons with intellectual disabilities) started the debate by stating that guardianship is not a solution, and we need other practices. There has been a long debate over the principle of legal capacity and exceptions based on “mental capacity”, but such exceptions are found to be purely discriminatory based on prejudices. This was also discussed and agreed in the CRPD Committee’s General Comment on CRPD article 12, which had the intention to clarify that debate, and to make the change more clear. The question HOW to provide support still isn’t clear yet. One has to be creative and take individuals as individuals, and there is no one-size-fits-all recipe.

After the coffee break, there was another very interesting plenary presentation by Mrs. Amita Dhanda (professor of law at Nalsar University of Law, Hyderabad, India).
She first explained the old paradigm under which all persons are assumed to have a healthy mind and capacity to act. This is presumed, and needs no proof. On the other hand there are groups of persons that are presumed to have an “unsound mind”, such as persons with psychosocial or intellectual disabilities, which then need to prove their capacity or incapacity. Often “universal legal capacity” is wrongfully understood in such a way that all persons with all types of disabilities can have rights, but certain groups of persons are deprived of the right to act (such as they can inherit property, but are not allowed to manage it). Whether this exception of the right to act is based on functional tests (and when the outcome is undesirable the person gets deprived of rights) or on status-based deprivation, this is discriminatory.
CRPD article 12 emphasizes that all persons have legal capacity in all aspects of life, which reaffirms the universal presumption of a sound mind and legal capacity for all. The CRPD also does not put capacity as an opposite to support (many people have support, but still have capacity). Vulnerability is part of the human universalities, and a universal concept needs to be constructed. The CRPD is not exclusively giving rights to persons with disabilities, but offers a new model to deal with vulnerability in a human rights based way.
So far, in many countries the concepts of legal capacity (a core human right) and mental capacity (personal health status) have been conflated in laws under which the right to act depends on mental capacity. If this would be universal, then everybody would need to prove their capacity and everyone should be tested to see if they meet the criteria of sound mind, which is not doable nor socially acceptable. This needs to be turned around, into the universal presumption that all persons have capacity and all persons should get equal opportunities (so don’t say that a person cannot do it, and that someone else can do it for him/her, but provide support). It is known that the competence-tests have errors in fact, and that they will never be really reliable (persons may try to influence the results by the nature of their answers). And instead of clinging to the fiction of competence-assessments for deprivation of rights, it is better to cling to an empowering fiction of a world where all persons can develop themselves.
Mrs. Amita Dhanda continued by clarifying the difference between substitution and support. Quite often it is claimed that for some small groups of persons with psychosocial or intellectual disabilities substitution is also support, as if there is no need to change the laws which all countries have in place. But there is a need to differentiate between substitution and support. In the case of substitute decision-making, someone else acts instead of the person, and takes over. The person cannot develop if not in the picture. Support means assistance, which clearly includes the person, and does not take away the decision making power of the person. Delegating tasks to another person , who follows the directions of the main person (such as a tax advisor or a nanny) is not seen as substitute decision making. There are several existing legal arrangements for voluntarily delegating certain powers to others, such as the Power of Attorney, which unfortunately cannot be accessed by persons who are deprived of legal capacity. There is an obvious distinction between substitution and supported decision making.
She then reflected on law reform, and recommended to distinguishing between Old and Obsolete. Some ingredients of the old paradigm may be useful, such as on support and advance planning, and these progressive parts need to be looked at carefully. By active participation of persons with disabilities and their organizations in the reform processes, conflation of concepts can be prevented. “Old” means: dating from before the CRPD, and “Obsolete” means: out of sync with the values, principles and spirit of the CRPD. What is Old needs to be revised and strengthened, which will lower the resistance to changes and shows readiness and coherence of the paradigm-change, and what is Obsolete needs to be eliminated, because it is a barrier. There can be no paradigm shift with half measures. It is important to think clear and act correct. And to assure another way of thinking, it is needed to give a voice to the excluded population.

I really liked the presentations so far.

Then Mr. Paul Appelbaum (professor of psychiatry, Columbia University, New York, USA) spoke on “assessing the capacity to consent and decide: origin and relevance of specialized screening tools”. Frankly I had expected a high level of CRPD awareness, but I was wrong, and I found this presentation quite disappointing. Mr. Appelbaum spoke about the 3 elements of decision-making: information, competence and voluntariness. Information is needed to make any meaningful decision, such as who to marry, what to do with possessions, what treatment to receive. This is the basis of “informed consent”. Competence means to use the information and to make a choice. The issue of competence is important because our society values autonomy (in a democracy the citizens autonomy and freedom of choices is key, and persons are allowed to make their own decisions if they are capable to deal with the information, which is based on the idea that a person can define their own interest best and therefor can make choices to promote their own wellbeing). Mr. Appelbaum defined the concept of Competence by 3 characteristics. Competence is not a black and white issue, but is specific on which task, for example a person with Alzheimer’s disease may be unable to do the bills, but can still make decisions on friends or health. In some situations a person is fully incapable, such as when in coma or in a late stage of dementia. And some persons are partially incapable, such as by dyslexia. So there is general versus specific competence. Another aspect is the task-specific competence, such as relatively easy choices (taking anti-biotics) versus complex choices with many aspects (having heart-surgery). Also, there is the temporal specificity, since some health aspects may vary over time, for example persons with Alzheimer’s are generally brighter in the morning, and psychosis may vary too.
Mr. Appelbaum then claimed in defence to Amita’s presentation, that there are different terminologies used in different disciplines, but he also works from the general presumption of capacity, and he stressed that a “burden of proof” applies when someone is accused of being incapable. (He seemed to be conflating some concepts here).
Mr. Appelbaum elaborated further on the 4 components of so-called Competence:
1 the ability to demonstrate a choice, 2 demonstrating understanding of the nature of the choice, 3. demonstrating a correct appreciation of the situation, 4. demonstrating the ability to reason. In all western countries mainly all 4 aspects of Competence are implemented in the applicable standards on competence-assessment. The selection-threshold of (1) how much evidence to demonstrate a choice, (2) how much understanding of the nature of the choice, (3) how much appreciation of the situation and (4) how much ability to reason is needed, may vary in diverse situations, depending on the risk. In general there are 4 simple questions that compose the competence-assessment test:
(understanding) what did the doctor say?
(appreciation) what do you believe will happen?
(choice) can you tell me what is your decision?
(reasoning) how did you reach this decision? tell me so that I can understand your thinking.

Mr. Appelbaum continued: Since an unstructured way of assessing competence has a low credibility, a set of instruments has been developed, to ensure an evaluation of all relevant data, providing a structure, and documenting/tracking changes. The Mac Arthur Competence Assessment Tool for Treatment is such a tool, which Mr. Appelbaum called “quite reliable”. The tool can also help to identify areas of support to stimulate an increase of competence (by providing better to understand information, or inviting supports persons). Mr Appelbaum said that if a person lacks understanding, decisions have to be taken in another way, such as by advance directives, family members or courts. There is a ladder of preference for this: it is mostly preferable to know and follow the explicit wish of the patient, second is a substitute judgement based on the known values of the person and what he/she would have wanted. Third is the best medical interest, which is traditional, but questionable if the treatment is not beneficial.
Mr. Appelbaum then stated that according to him, individual decision making should be encouraged whenever possible, but that it would be unworkable if substitute decision making was no longer possible. He then shared a story about his mother, who had increasing symptoms of dementia and increasing supports needs, but she was unwilling to accept the care. Mr. Appelbaum wanted to protect his mother and went to court for a guardianship procedure, and now she is placed in a protected environment, and her son manages her affairs. She is still alive, she has not lost her place to sleep, she has not exhausted all of her resources. Mr. Appelbaum stressed he found this reasonable and right to do.

There was quite some discussion afterwards, and several critical questions were directed to Mr. Appelbaum, such as : What if a person refuses to do the capacity-test? Mr. Appelbaum answered that he would explain to the patient that the capacity would then be assessed otherwise, by talking to everyone else except the person concerned (which didn’t sound very compassionate to me).

Maths Jesperson mentioned that in Sweden all people have the right to vote since 1920, and there is no such thing as a test for legal capacity on the right to vote, so how can it be that this is such an issue in other countries? This illustrates that quite a lot of discussion points here are merely rooted in cultural and traditional practices of exclusion, and may not be relevant at all if you look at the actual implementation of inclusion.

Another bright question was from Eilionoir Flynn, who asked: Why not stick to the criteria of information and voluntariness, and leave out the assessment of mental capacity/competence? Since the goal is to protect the person, it may be good to focus only on voluntariness and information sharing, and to avoid the issue of competence/incompetence, since the latter obviously can be used to deprive persons of their rights.

Due to a lack of time the discussion ended before Mr. Appelbaum had the chance to respond to these questions. But it had been a very interesting session. I had the feeling that it had been a constructive day so far, as if the old paradigm was losing its grounds, and a new perspective started to stir the minds of the audience. It was a lot of information to take in.

The last session of the day was a roundtable discussion on Perspectives of mental health service users and professionals. The programme had already gotten quite some delay, and the next speakers were asked to keep it short.

Mr. Philippe Guerard (Advocacy France) gave his testimony as a person with psychosocial and other disabilities. He mentioned that he had needed support to overcome the stairs to reach the stage, and that this support doesn’t take away the disability, but it allows him to participate. He spoke about the horrible stigma he had endured during his youth due to the fact that he is paralyzed on one side of his body. He was taken out of his family, and had been placed in several institutions, where he was still mocked and abused , until he could no longer feel who he was. He knows the importance of support, which is why he eventually joined an organization to speak out for others who are harassed and abused. This was a huge step, because he was always raised with the idea that he had no ability or capacity to act. He emphasized that it is okay if people speak out on behalf of another, as long as the message is not deformed. His experiences illustrated how important it is to meet persons who treat you as equal, which made him aware of his rights, and interested in activism and politics. He said: Great things happen if you listen to people who are not heard before. He mentioned the French Mad Pride-event last year, where people could be proud of themselves and draw positive attention to mental health aspects, which helps to counter the negative stereotyping in the media. He spoke of the many barriers that he had managed to overcome, to live with the women of his choice, to have the guardianship lifted for a schizo-diagnosis, and to form a family and be a father for their son. It is the human support that is more valuable than the medical support.

Mr. Thierry Najman (psychiatrist, psychiatric hospital of Moisselles) was the next speaker. He was obviously a progressive psychiatrist with a high level of awareness. He started by saying that major historic events tend to change psychiatry. After the French revolution, psychiatry became a discipline, and in 1831 the first law speaks about asylums. Mr. Najman stated that we now live in the neo-alienist period. A couple of years ago the former French president Sarkozy held a speech in which he falsely claimed that the dangerousness of persons with psychiatric problems calls for more security measures. The numbers of persons in France under high security regimes have doubled since 2008, and also the number of persons subjected to involuntary hospitalization and involuntary treatments, and also involuntary treatments in the society are on the rise. But mental health is much more than only biological features, it is about human relations. Medicating and locking persons up is not good care and such practices are incompatible with articles 12, 14, 25 and many other rights. Psychiatry should focus on a meeting of minds, and human relations.

Then Mrs. Emily Pecqueur (French guardianship judge) explained the French court procedures on deprivation of legal capacity, and stated that there is no automatic protective measure on the basis of disability (no status based guardianship). The protective measures are only used “when considered needed”. Then a medical certificate needs to show an observed change in health status, a declaration of incapacity, and the interest of the person. The protective measures are an option amongst a variety of options. Currently there is in French the “tutelle” which seems comparable to full guardianship, and the “curatele”, which seems to be the partial guardianship. For both measures an independent decision is needed, and then courts receive the relevant information for the decision and weigh the pros and cons before taking a decision. On some issues substitute decision-making is impossible, such as on adoption or recognition of a child. Mrs. Pecqueur believed that this system was not so far away from the CRPD, and she seemed to believe it would not be possible to ban all forms of substitute decision making: what about persons who cannot speak? Or what about people who say contradictive things? Or what about people who make irresponsible choices, such as giving up their welfare pension because they think the money will then go to orphans in Africa – resulting in homelessness for the person concerned? These difficulties have to be prevented.

I could understand her concerns, and in my view it is mainly the proposed solution that needs to be discussed (substitution or support).

The last speaker of the day was Mr. Pierre Bouttier (Court-appointed representative). He was of opinion that guardianship is not substitute decision-making, but is based on the “best interpretation of one’s wishes”. In the guardianship mandate it is imperative that the decisions taken are related to the expressed will and the behaviour of the person concerned, which according to him was in line with the CRPD. He stated that article 12 can help to change the mind-set to do this better.

It was about 19.30 when the session ended, and after a nice reception with some bites and drinks, and then we, Stephany, Maths, Eilionoir, the Belgian girl and me, went to have a delicious French dinner in a nice place near the conference venue. We had a good time together, sharing our views on the interesting day of discussion.

Maths and I came back at the hotel past midnight and we spent quite some time talking to each other in front of the hotel. Then I still worked for several hours in my room, almost up to 4 AM, but it was already too late to finish my blog, and so I quit and went to sleep. I needed to get up early the next day. The next morning I really regretted that I had worked so long