EDF General Assembly on Legal Capacity - Dublin - Reisverslag uit Dublin, Ierland van Jolijn Santegoeds - WaarBenJij.nu EDF General Assembly on Legal Capacity - Dublin - Reisverslag uit Dublin, Ierland van Jolijn Santegoeds - WaarBenJij.nu

EDF General Assembly on Legal Capacity - Dublin

Door: Jolijn Santegoeds

Blijf op de hoogte en volg Jolijn

30 Mei 2016 | Ierland, Dublin

On Friday 20 May 2016 I went to Dublin to participate on behalf of ENUSP, the European Network of (Ex) Users and Survivors of Psychiatry, http://www.enusp.org , at the General Assembly and Board meeting of EDF, the European Disability Forum, http://www.edf-feph.org/ .

I started my day with a flight from Eindhoven Airport, nicely close to my home. At the gate I met Wim, a velotypist whom I had met at earlier meetings, and he was also going to EDFs GA, so we travelled along together. That was very nice. After arrival at Dublin Airport, we walked straight to the Radisson Blu Hotel across the road, where we were welcomed by Virginie of EDF. Soon several others arrived, and we had a nice chat and a lunch together.

At 4 PM the EDF Board meeting started. I was replacing another Board member on behalf of ENUSP, so I was technically an Observer.
First we were welcomed by Yannis Vardakastanis and Catherine Naughton, and the agenda was approved. Then we discussed the draft mid-term activity report of 2016, which highlighted several of EDFs recent activities, such as on the European Accessibility Act, the follow up actions in regards of the UN CRPD Concluding Observations to the EU, European networking and international capacity building activities, and last but not least, a new EDF website design which is more accessible. Also some upcoming activities were reported on, such as the High Level Group meeting on 9 June, the EC Work Forum on the implementation of the UN CRPD on 10 June, and the upcoming Conference of State Parties to the UN CRPD from 14-16 June.
After the activity report, we were informed about the stage of preparation of the next EDF General Assembly in 2017, which is still in development. And then some other business were discussed, including some brief initial ideas for the upcoming 20th anniversary of EDF in 2017.
The Board meeting closed just after 6 PM, and we were invited to join the celebration of European Air Passengers Rights legislation in an event at the Dublin Airport, terminal 2.

So, at 7 PM, I went back to Dublin Airport, to join the celebration of 10 years of European passengers rights: Regulation (EC) No 1107/2006 of the European Parliament and of the Council of 5 July 2006 concerning the rights of disabled persons and persons with reduced mobility when travelling by air.
There were several speakers, including Airport officials and persons with disabilities, who shared their experiences. The regulation 1107 has resulted in significant improvements at many places, including at Dublin Airport, which excels at this point, but still, much needs to be done as well, since wheelchair-users and persons with reduced mobility still face a number of barriers when they want to travel by air. It was an interesting event, with nice snacks included.

After the Airport event, most EDF-participants took the bus to the Ballsbridge Hotel, where the EDF General Assembly would take place for the next 2 days. At the hotel I met Stephanie, my ENUSP-colleague, and we had a very nice evening together. I was great to see her again. It was a nice day.

On Saturday 21 May 2016 the General Assembly (GA) of EDF started. There were over 200 participants coming from all over Europe, and mainly persons with disabilities themselves, all advocating for rights and improvements at all levels, and all cooperating side by side to realize the UN CRPD. It’s a nice atmosphere.

At 9 AM the EDF-GA started with a Thematic Conference on Legal Capacity, co-organized by the European Disability Forum (EDF), the Disability Federation Ireland (DFI) and the National University of Ireland (NUI Galway).

The opening session started with a welcome by John Patrick Clarke and Yannis Vardakastanis on behalf of EDF, who explained that article 12 is the backbone of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), which also affects all other articles. Article 12 gives all persons with all types of disabilities the right to legal capacity, which is somewhat a legal earthquake to some. For the full implementation of the UN CRPD across Europe it is important to not only focus on social and economic rights, but to also include the political and legal environment. The CRPD brings a wind of change that needs to be mainstreamed as part and parcel of the human rights movement.

Then Senator John Dolan, also CEO of the Disability Federation Ireland (DFI) spoke: CRPD rights are human rights. These are not new rights, but apparently, persons with disabilities fall between the cracks of our system, and the UN CRPD is needed to remedy that. It is sad to realize that 60 years after the Universal Declaration of Human Rights, there is still so much work to do to make human rights really universal and for all. Europe can play a role there. Of course there is a lot of critique on the EU and its bureaucracy, but the EU also has value and is important in the current complex world. Regulation 1107 is an example showing what effect the EU can have.

Mr. Finian McGrath, Minister of State with responsibility for Disability issues, spoke about his task to deliver the implementation of the CRPD in Ireland. There are gaps in the provision of services, and also in the legal frames when it comes to legal capacity. Ireland wants to ratify the UN CRPD, but not without amending existing legislation to meet all requirements and conditions. A roadmap for ratification was made in 2015. Also the existing mental health legislation needs to be changed. Mr. Finian McGrath expressed his commitment to work hard for the rights of persons with disabilities, and to build an inclusive Ireland, and an inclusive Europe.

Session 1 on the Global context and international legal and policy framework, started with an introduction by Klaus Lachwitz of EDF, who explained that article 12 recognizes legal capacity for all persons on an equal basis in all aspects of life. This means everybody is in, and nobody is left out. Yet even today in Europe, there are still many countries with guardianship-regimes, large scale institutionalization and even forced treatments, especially for persons with psychosocial and intellectual disabilities. In the drafting of the UN Convention on the Rights of Persons with Disabilities (CRPD), hundreds of persons with disabilities shared their stories, and their stories showed that the core element was exclusion, from societies and from laws. The CRPD requires to shift to inclusion.

Then there were two presentations by self-advocates on the importance of CRPD article 12,supported decision making and its challenges.

The first presentation was a co-presentation by Claire Hendrick and Sarah Lennon of Inclusion Ireland. Claire shared her experiences of deprivation of legal capacity. She was put under “ward of court”, a guardianship regime, after her mother had passed away which had made her homeless. While she was grieving, she was assessed as “unable to care for herself”, and based on her intellectual disability, she was placed under “ward of court-regime”. She was not allowed to make any decisions about herself, and had to ask permission for everything. She wanted to buy a home with the heritage, and had to go through a long re-assessment procedure and prove her abilities. Luckily she had support for her wishes, and now she has her own home, and gets support when she needs it. Her family is just 20 minutes away, and she is about to graduate. She feels much more human than before when she had no decision-making power over her own life. Claire sees a positive future for herself now. “Life is a challenge, we keep learning and moving on”.

The second speaker was Roisin deBurca of Down Syndrome Ireland. She spoke about her very impressive curriculum as a student. She grew up in Galway, and went to a regular school with her brothers and sisters. She worked very hard, and passed all the subjects. She then wanted to study at the Business Academy, and while working hard for it, she became the youngest student with Down Syndrome, and was awarded Student of the Year in 2009. She also has a lot of hobbies next to her study. She explained that she wants a job and live independently, and that her parents always wanted the same for her as for her brothers and sisters. She is very happy that her family and teachers support her. She needs support in several ways. For example in decision-making, she needs to understand all information, and it takes preparation to take decisions, often family, parents and professionals help her with this. And also Down Syndrome Ireland helps.
It was a very impressive story.

The third speaker of this session was prof. Gerard Quinn, director of the Centre for Disability Law and Policy, NUI Galway, who spoke about the international legal and policy framework.
The model of “equality of opportunities” (dating from 1990) is not the same as the social model, because it blends the civil rights and social rights, and adds a capacity-criterion that the person needs to understand what it means to be human. But if rationality is a condition for human rights, we are back in nazi-times, devaluing persons with several types of disabilities. The criteria for rationality and cognition exclude persons with disabilities, and need to be changed. Article 12 requires us to redefine what it means to be human. In our nature, we all need support. It is a philosophical challenge. We need to look at excluded persons and analyse the repression. What if a non reason-based and non cognition-based definition of human being was in place, which does not imply a test on whether the person is human, based on a certain IQ or “appreciation of risks”, to have rights and liberty, which is a terribly outdated approach. Many decisions are taken on an emotional basis, such as marriage. The overall human rights philosophy is based on social inclusion and equality, and any exclusion or reduction of rights based on capacity is in contrast with this core philosophy.
So, clearly, a paradigm shift is needed, doing away with the tests and measurements, and putting the focus on support, including communication techniques and the variety of ways of peering to get to the soul. In supported decision making, the focus is on the preparation of decision making. And to clarify: States have the duty to provide access to support, but State officials do not have to perform the support itself. Service providers role may be to expand the social circle. Article 12 is part of a bigger discourse, and reforms at many levels are needed.

Afterwards, an interesting critical question was raised, on potential risks of moving away from rationality in regards to religion-dominated communities. Gerard Quinn answered that there is a difference between rationality as a principle of justification (reason) and rationality-tests to narrow down what is human. The latter is injustice, which is also shown by the experiences of persons with disabilities.

After a coffee break, Session 2 started with presentations of national legal reforms and lived experiences of supported decision making mechanisms from 3 EU-countries: Ireland, Lithuania and Slovakia.

Ireland was up first.
Dr. Eilionoir Flynn, deputy director of the Centre for Disability Law and Policy of NUI Galway, spoke about the new Irish Assisted Decision Making Law. The old Irish guardianship-system, with status-based court orders on “wardship” and “ward of court”, is now being replaced with decision support services in the new law. The old system of capacity-testing was mainly aimed at exclusion, and there was no support offered to pass the test. The new law is aimed at providing support and assistance, and is based on the presumption of capacity. It ranks a number of options, such as Assisted decision making agreements, Co-decision-making agreements, Decision-making representatives, and Decision making Orders (court orders) including Power of Attorney (for financial and health care decisions), and Advance Directives (for physical and mental health decisions). A big disappointment is that the Advance Directives will not be legally binding if the person is involuntarily detained, and the new law still maintains definitions and criteria for mental capacity assessment, which will result in some people being denied their right to legal capacity and denied support in decision making. Despite that, the new law contains several guiding principles that are to be called progressive, such as the presumption of capacity, focus on support and accessible information, allowed to make ‘unwise’ decisions, the will and preferences of the person are guiding (as far as practicable), and another key is to talk to others who know the person very well to identify “best interpretation of the will and wishes of the person”, instead of the paternalistic idea of “best interest”. Unfortunately, the bill misses provisions for those who do not have natural support, and it doesn’t cover “all areas of life”, and as said, it still has parts of mental capacity testing and substitute decision making. But nevertheless it is a step forwards. In the next 3 years, all persons will be discharged from plenary guardianship in Ireland (3000 persons will be discharged from “ward of court”).

Then Fiona Walsh, Recovery Expert by Experience spoke on their involvement in the Irish law reform. During the project on capacity-legislation, the Capacity Coalition was formed, which formed a key lobby to politicians. She spoke about what had worked, and what hadn’t worked well. She highlighted some challenges and barriers, such as encountering a very strong psychiatric lobby, which had been involved at an earlier stage, so the Capacity Coalition came in relatively late, which proved to be a disadvantage. Other barriers were a lack of time and funding, not having a media strategy and poor use of Social Media, too late in engaging with the Departments and Ministries and challenges to find broader support in the Ministries and Departments, and the fact that the main amendments on legal capacity and advance directives were not accepted. What worked well, was to have a strong chair, to include a diversity of views and to develop consensus, to engage with a small number of key politicians, and to provide context to the issues with examples and lived experiences, as well as to make references to UN standards and other expert materials. Yet new challenges are ahead, with a newly elected Irish government…

Then an example from Lithuania followed.
Dovile Juodkaite, president of the Lithuanian Disability Forum (LFN) spoke about the legal capacity law reform in Lithuania. The old Lithuanian law is an “incapacity law”. The reform of it was pushed by NGOs and DPOs, which were consulted, but their views were not taken in. The new law still allows for deprivation of legal capacity based on mental disability, as a last resort and for shortest time possible and so on. Under the new law more attention is given to support, including Assisted Decision Making and Advance Directives (regarding future incapacity) which will be registered. Unfortunately, the new law still allows courts to restrict legal capacity or to declare someone incapable in certain areas of life. A commission for periodic review of capacity-assessment is also added in the new law. Yet the outcome of the assessment is not used to ensure support, but instead to deprive legal capacity.
It is very unfortunate that the new Lithuanian law fails to comply with the UN CRPD. The CRPD Concluding Observations clearly mention to repeal all laws, policies and practices that permit the denial and restriction of legal capacity and to replace regimes of substitute decision making by supported decision making.

A reflection was made regarding the similarities in the challenges in various countries. It seems that in many countries, also in the Irish context, people are detained by mental health laws and have no access to article 12 rights. And then governments make attempts to make new mental health laws to seek compliance with the UN CRPD, but there is no option to talk about article 12 and involuntary treatment… which is obviously a problem.

The third example came from Slovakia.
Zuzana Stravrovska, Commissioner for People with Disabilities, spoke about the reforms in Slovakia. In the old system, Slovak courts issued a thousand decisions on deprivation of legal capacity per year, and only 60 decisions on partial restrictions of legal capacity. She gave the example of Anna, who was not even informed about the restriction of her legal capacity. This has now changed, since the court procedures in Slovakia are reformed. Courts cannot order full deprivation of legal capacity (plenary guardianship) anymore, and can only restrict legal capacity partially or restore competence to perform legal acts. Court must hear every person. Each person gets a Process guardian, who gives information about rights and obligations in the judicial proceeding. The health condition will be assessed by an expert opinion or her own doctor and the medical reports. The court decides if restrictions of legal capacity are necessary, and the judgement must now also be delivered to the person concerned. Restricted legal capacity means that a guardian acts on the persons behalf.
Supported decision making does not yet exist in Slovakia.

The last speaker was Robert Drahovsky of the Association for Help to People with Intellectual Disabilities, and also president of Self Advocates in Slovakia. He explained that many persons with intellectual disabilities in Slovakia are living with family or in big institutions, which is claimed to be for their safety. There is a widespread fear that persons with intellectual disabilities could make a so-called bad decision, and then the right to make any decision is restricted. Guardianship is also called legal death. What is needed is supported decision making, and guardianship needs to be stopped. The suggested tools are: supported decision making where others help the person to make a decision, voluntary assignment of representatives, and voluntary assignment of a guardian for financial or property management, following the will and preferences of the person.

Then there was time for questions and answers, and Ana Pelaez made some very interesting remarks. She referred to the General Comment on CRPD article 12, which also offers more guidance to the connection of article 12 to other articles. She also raised her concerns on article 12 in relation to women, and emphasized that the practice of forced sterilization of women who are labelled “incapable” is still ongoing in most European countries, except Sweden. Article 12 is a way to full inclusion, connected to the right to participate, which is covering the full practice of all areas of life.

Then it was my turn to speak, and I agreed with Ana Pelaez on her last point of legal capacity being a full practice in real life, much more than a procedural decision-making moment. I then explained that I represented the European Network of (Ex) Users and Survivors of Psychiatry (ENUSP), and that I have experienced deprivation of liberty and legal capacity myself, being long term solitary confined in mental health care, where my opinion about my own treatment was not listened to. I had no right to say no. I was subjected to horrible forced psychiatric treatments and degrading interventions, and my voice was not listened to. Even when I had a medical injury, my voice was disregarded, and I was seriously neglected. Anything I said was disregarded. It was horrible. And even now, after getting out and while I am recovered, my opinion about the treatment back then is still not listened to. There is no access to justice, despite the fact that it is now 22 years later, my voice about that horrible treatment is still disregarded. This is a real life problem concerning legal capacity, and many persons with psychosocial disabilities suffer from this huge problem in their life, that their voice is not listened to, and their opinion not taken serious.
I then continued to share some good practices that have been identified by ENUSP, such as the Personal Ombudsman in Sweden, who will take as long as it takes to make a connection with a person who is in distress, and who offers help in any area of life, to support the person as a kind of mediator. Also the Soteria model is known, as well as Open Dialogue. And in the Netherlands I have designed a model based on using Family Group Conferencing for supported decision making to prevent and overcome crisis situations in the field of mental health. Family Group Conferencing (FGC) is basically a voluntary consultation process, where you invite your own circle of important people to think along with you to overcome a certain challenge, and to find solutions that fit you and your circle. These are some promising practices to realize supported decision making, and ENUSP is happy to answer any questions you may have about these models.

Donata Vivanti strongly stated that every parent knows that every child with disability, or every person with disability can express whether they agree or not. The “best interpretation of the will and preferences” is practicable and it is making it more clear who decides, because in the current situations there can be a fight over what is “the best interest”, as professionals may favour “protection” while putting the person aside as a non-person.

A remark from a Belgian representative was about the Belgian law reform on incapacity law, which was done rather quickly, and has a diversified approach. But now they face that lawyers and judges are not aware of the human rights based approach, and practices have not changed. How to change judges and train them on human rights perspectives?

Eilionoir Flynn responded by explaining that in the new model, instead of an assessment of mental capacity, the focus is on finding out what the wishes are, and not denying these by arguments of “best interest”, but to support what people want, and the only limit is the law. This is also found in the General Comment on CRPD article 12. If communication is impossible, then the will and preferences of the person have to be guessed, but at least we acknowledge that it is a guess, and not a certainty, and we can deal with that accordingly.

This was the end of the Thematic event on legal capacity. It had been a very interesting morning.

After a nice lunch, the second part of the General Assembly started, which was the Business Session of the AGA. We discussed the EDF Workplan, EDFs priorities for the European Commission, the European Accessibility Act and the European Pillar of Social Rights, and EDFs financial report. This was not a very special or exiting meeting, but mainly just a practical briefing, which was still somewhat interesting.
For the Workplan, I raised my concern that persons with psychosocial disabilities are not specifically included in the SDGs, and the SDGs mainly seem to promote treatments for so-called non-communicable diseases, yet the problems of legal capacity and liberty for persons with psychosocial disabilities are not specifically addressed in the SDGs, while the Guidelines on Article 14 (liberty) which are issued to the EU, very clearly call for action, so it could be a European dimension to make sure that persons with psychosocial disabilities are not forgotten.
I also mentioned my concerns about the declarations on the CRPD which are issued by several European countries (including Poland, Estonia, France, Netherlands and also Norway), such as for example on CRPD article 15, where several States basically claim an exception that lowers the rights of persons with psychosocial disabilities based on the definition of the Council of Europe of “persons not able to consent”. Since the prohibition of torture is an absolute right, there can be no exception, and since references are made to the Council of Europe-standards in this regards, this should be addressed as a European issue as well.

At several points we had to vote, and afterwards, I found out that my hair had made them doubt while counting the votes (they saw something red peeping through, but that was my hair. lol). The business session ended around 6 PM.

At 7.30 we were expected in the restaurant of the hotel for a nice dinner. I sat with Stephanie of ENUSP, next to Nienke and Jenny from the Dutch organization Iederin, and many other nice people. It was very nice. During the day and the evening, a lot of references were made to Frank, who obviously had been a great hero in the European Disability movement, and he was remembered at this occasion. I haven’t known him, but considering the tribute that EDF members gave him, he was surely deeply loved and a very important person for everyone.
Then a 12-person youth band performed traditional Irish music. They were young and very good, and they eventually got quite some people on the dance floor, all trying to manage the traditional folk-dancing, which was really fun to do. And then slowly the evening programme came to an end. I surely enjoyed it.
Afterwards, Stephanie and I went to the hotel bar for a final drink, and had some more interesting chats, and then eventually we chatted till very, very late (oops). So then it was best to get some sleep and to postpone my blog, and so I did.

On Sunday 22 May 2016, the last day of the EDF General Assembly took place. It was again a Business Session, and only a half day. We spoke about the Sustainable Development Goals (SDGs) and the European and Global dimension, the CRPD country reviews and the upcoming General Comments on Article 6 (Women with Disabilities) and Article 24 (Education). Then some ideas were shared on the upcoming 20th anniversary of EDF in 2017, and the participants brainstormed about possible actions to celebrate that occasion.

Around 1 PM the EDF meeting ended, and most people left the hotel. Originally, Stephanie and I had planned to go into Dublin for a short sightseeing walk, but we had gotten another idea, and we stayed with John in the lobby of the hotel, working on the script of a video message of ENUSP to the Council of Europe, summarizing our input for the Council of Europe’s draft Disability Strategy 2017-2023.
You can find the video here: https://www.youtube.com/watch?v=UIJpFjLbuqI&feature=youtu.be

Eventually, when we were done shooting the video, Stephanie and I appeared to have just missed the coach to Dublin Airport, which goes once per hour, so we decided to get a taxi to the Airport together. And then we said goodbye. I really wished we could have had more time together, it had been great.
Eventually, my flight was delayed (like many others), and the trains as well, amounting to over an hour of delay in total, and eventually I missed the last bus connection to go home, but I was lucky enough to find someone to bring me home by car. And then I was exhausted.

I really had a nice weekend, even though we didn’t leave the hotel, and saw nothing of Dublin itself. It was great to meet with Stephanie and John, and so many others. I liked the Thematic conference on article 12, and even though it was mainly focussed on persons with intellectual disabilities and less on psychosocial disabilities, it was a very relevant and informative thematic conference. And EDF itself is inspiring as well. So I enjoyed the EDF General Assembly in Dublin. It was a good experience.

  • 31 Mei 2016 - 15:42

    Sean Crudden:

    Thanks for a very full description of the conference in Dublin. I knew nothing about it but I feel clued in now! I think the SDG's provide a vehicle for discussing the future. But I am not sure where we come into it. I contributed to some of the UN discussion this past year or two but I have sort of lost track now. Anyway, thanks again, Jolijn.

  • 31 Mei 2016 - 19:45

    Timo Kallioaho:

    Hi Jolijn,

    It was interesting to read what you told about the EDF Genereal Assembly.

    I once wrote to you an E-mail message regarding to the 5th European Conference on Mental Health 2016 in Prague. I wrote that E-mail especially to you because you will be one of the keynote speakers there. I'm also VERY interested to come there an participate at that cinference. I have spoken several times with Mr Lauri Kuosmanen (from Finland) by phone. He belongs to the Organizing Committee and he has told me that his organization (EVIPRO) could pay my flight tickets and accommodation.

    What would you think, could it be possible for me to come to Prague as a Finnish representative of ENUSP?

    I would be happy if you could answer this message.

    Take care of yourself and a happy summer.

    Wishes Timo Kallioaho

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