Report of EDF board meeting 2016 Amsterdam

This report comes a bit later than usual, because my mind was occupied with some other things. But nevertheless, here is my report of EDFs latest board meeting.

Last week, on 12 and 13 March 2016 I participated on behalf of the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP, http://www.enusp.org ) in the board meeting of the European Disability Forum (EDF, http://www.edf-feph.org ) which took place at the Hilton Hotel at Schiphol Airport in Amsterdam.

I arrived on Friday 11 March in the evening and I met some other participants in the lobby before going to bed. The next day the meeting started at 9 AM with a Thematic Conference on the Dutch situation: “From global to local - Building inclusive local communities with an EU perspective” , with several speakers, such as the Dutch State Secretary of the Ministry on Health, Wellfare and Sports, Martin van Rijn, the head of the Disability Unit of the European Commission, Emmanuelle Grange, and several representatives of Dutch DPO’s (Disabled People’s Organizations) and Dutch municipalities.
But unfortunately, I overslept big time, due to a restless night in a fully darkened room, and an accidentally silenced phone. When I checked the clock it was shockingly 11.45, almost noon. I was in shock and rushed to get to the meeting as fast as I could. By the time I arrived it was about lunch time , 12.30. I had missed the entire morning session, and I felt very bad about that, but I couldn’t help it. It just happened. I tried to make the best of the rest of the day.
During lunch time, other participants told me about the speech of Martin van Rijn, and told me it was typically a speech of a state representative, claiming that the Dutch are implementing the CRPD fully and rapidly (and not mentioning the delay of 10 years, nor the 8 interpretative declarations (some of which are merely reservations) which the Dutch government applies to the ratification of the UN Convention on the Rights of Persons with Disabilities). It was clear that I hadn’t been missing anything really special, but still, I felt really bad about missing the morning session.

After the lunch, which was my breakfast, there was a session of Dialogue Circles on various topics. I choose to join the dialogue circle on Deinstitutionalisation and making independent living work at the local level. With a group of about 12 participants, we discussed how to promote independent living, community based services and deinstitutionalization. We tried to identify good practices and solutions to the barriers faced by persons with disabilities across Europe. It was a very interesting discussion about many aspects and preconditions for independent living, including removing barriers in law, promoting a clear understanding of independent living, the need to not just close institutions but to provide alternative services in the community, the need to ban outpatient forced treatments and not to force people to live someone else’s life, the tendency of governments to still choose for seemingly cheap but bot the best solutions, the impact of the economic crisis, the decentralization of management and different service levels in cities and rural areas, increasing expectations of volunteering citizens and worries about sustainability for the future, fear, rejection and abuse in the community towards persons with disabilities, the idea that independent living and personal assistance would be more expensive than institutionalization, and so on.

A very interesting remark was made on shifting the paradigm and mind-set on support services for independent living: Moving away from the approach where all services are based on the assessment of predefined thresholds and rigid, bureaucratic status-based selection criteria for provision of support and services. – towards an approach based on enabling inclusion, with a focus on the person’s actual needs to live in the community on an equal basis with others. The provision of personal assistance and support based on needs, rather than status, would make services available to anyone who needs them, which can help to stop the culture of us (disabled) versus them (non-disabled) and can help to stop the political fighting over the resources for independent living. Since every human being has support needs during certain part(s) of their lives, accessibility of communities and availability of services (personal assistance, specific supports) are eventually beneficial to the entire community.
I liked this remark.

After the Dialogue Circle there was some time to visit the market stalls of various Dutch organizations or EDF-member organizations on the theme local inclusion.

At 15.00 the plenary session started again, and the summaries of the 4 Dialogue Tables were presented, which formed the basis for a statement by EDF on the role of municipalities, which can be found here:
https://gallery.mailchimp.com/865a5bbea1086c57a41cc876d/files/EDF_Board_Resolution_on_the_local_implementation_of_CRPD_March_2016.pdf


Then, after a coffee break, at 16.00 the actual board meeting of EDF started.
After the adoption of the agenda and several reports of 2015, there was a session on the overview of plans for 2016, presented by Catherine Naughton, director of EDF, and a 30 page document was provided with the description of planned EDF activities. The EDF Overview of 2016 looked very well organized, but I noticed that there were hardly any activities that prioritized the issues of persons with psychosocial disabilities, and the agenda was fully focussed on the EU-level and its current legislative proposals such as the European Disability Strategy, the European Accessibility Act and the European equality-legislation (which are of course very important). But we know that CRPD article 12 and 14 are not dealt with by the EU, but by the Council of Europe, and there appeared nothing planned on EDF advocacy towards the Council of Europe in 2016. So I raised my hand and asked why this was. It appeared that over the years there has been a long fight for EDF to be recognized by the Council of Europe. EDF wants to be in a full role with a right to vote, but the Council of Europe only accepts them as an Observer so far. EDF pays the fee, but that cannot be paid with EU funds. There have been a lot of changes of the organization and structure of the Council of Europe, and they face shortage of staff, and as is said the next 4 years the CoE plans to focus only on human rights broadly. However, there is a CoE Special Group on Disability who directly report to the GA of the Council of Europe, and EDF is trying to make pressure on national representatives in the CoE Special Group on Disability to push for participation of DPOs. Currently, CoE Member States are still fully in control, so EDF will keep on lobbying to the Ambassadors of the Member States, to push for participation of DPOs, as well as actively supporting the lobby against the proposed Draft Additional Protocol to the Oviedo Convention as was strongly requested by several EDF member organizations (ENUSP, MHE).

I was happy to hear that behind the scenes, EDF is actively taking the opportunities to advocate for DPO participation at the Council of Europe, so it is not that our issues are excluded, but it is just a complex situation at this point, and it’s being worked on.
It was also great that Pirko mentioned that she had a contact within the Council of Europe, who had actively approached her for making a connection to the disability movement, and she could put us into contact with this person, which is of course a great offer.
In addition, the theme of the upcoming General Assembly (AGA) of EDF in May 2016 in Dublin is planned to be on article 12, so this will also be an opportunity to focus more on the issues of persons with psychosocial disabilities and to define more concrete actions on this topic.
So this is all positive. There is room and support for persons with psychosocial disabilities within EDF, and even though the EDF agenda of 2016 may be filled with other important actualities that have less focus on persons with psychosocial disabilities (especially because the main focus is currently on the EU-level), to me it is clear that this is a good strategic choice for this moment, especially since the Concluding Observations of the EU review by the UN CRPD Committee need to be effectuated on the EU level now, in order to be fruitful for Europe. And of course, also EDF cannot do everything at once. So considering all of this, I am at peace with the strategic choices of EDF and the plans for 2016. I think it’s based on well-considered choices.

Another remark was made that this year’s Conference of State Parties (COSP) to the CRPD in June 2016 in New York will also have a sub-theme on persons with intellectual and psychosocial disabilities, which is surely interesting and would make it important for representatives of user/survivor organizations to participate in the COSP 2016 (and resources for global representation would be needed, which is always very challenging).
See the announcement of the Conference of State Parties to the CRPD, June 2016 here: https://www.un.org/development/desa/disabilities/conference-of-states-parties-to-the-convention-on-the-rights-of-persons-with-disabilities-2/9thsession.html

EDF is closely following the work of various commissioners (European Commission) who are preparing reports on behalf of their DG’s on the actions for follow up to the Concluding Observations of the EU review by the UN CRPD Committee. Some of these draft reports have already been sent to EDF members for consultation upon request of the particular commissioner. The realization of EU actions as follow up to the CRPD Concluding Observations on the EU is of course a very important topic for EDF, and therefore a key theme for EDF activities in 2016. Logically.

The final session of the day was on EDF initiatives on refugees and migrants with disabilities, with an external speaker, Kirsten Lange of UNHCR (the UN Refugee Agency, http://www.unhcr.org/ ). She briefly spoke about the current situation of refugees and migrants in general. In 2014 there was a route where people walked into Europe, and in 2015 these routes were blocked by fences. Now there is an increasing number of people stuck in Greece. The role of UNHCR is to support governments, and to coordinate work with partner organizations such as UNICEF. UNHCR hasn’t been active in Europe before. Now they are helping with the response-plan. UNHCR normally only helps refugees, but in the current flow to Europe there is a mixed migration context of refugees and migrants, which are not clearly distinguished, and in general, most persons want to reach West Europe, and do not want to show their identitity until they reach their destination. This results in an onward movement. In the crowdiness, families get separated. The EU has now started the hotspot-approach with registration and relocation, but the hotspot approach is not really operative so far. UNHCR has created support hubs for children and families along the route, the so-called Blue-spots, which are designed to support children and families by providing basic services and protection, such as a safe place to sleep, food and medical or social support. The UNHCR has several guidance documents, but these are not disability-sensitive. So Kirsten Lange opened the floor for input from the experience of EDF members. This generated a lot of response.

The first remark was about a dramatic part of the history of France, where during the war the persons in the hospitals were abandoned, because they could not migrate. They were left, and many died. And 15% is the average number of persons with disabilities globally, so probably 15% of the refugees equals the number of refugees with disabilities. It is unclear what happens to them. They could be left behind. Also along the route it happens that families abandon people who cannot transfer. There are no data of the number of persons with disabilities in camps. And as a side-note, about 90-95% of the persons in camps get no assistance.
From Italy, we heard that about 20% of the arrivals are unaccompanied minors. At Lampedusa, basically all female refugees, all women and girls, are pregnant due to rape. This is horrifying. Also from Greece came a similar testimony, about women, boys and girl being raped. The camps are full and there is no support. The social work and the police cannot handle this.. It seems that the number of women and girls travelling to Europe is increasing significantly.
From Germany we heard about the 100.000 volunteers who supported the arrival of 1 million refugees and migrants. If these volunteers notice that someone has a disability, the volunteers will try to help, and doctors may help without being paid. But other parts of the community are more negative to this support, and similarly, this issue is now dividing Europe.
From Turkey, sharing a 910 km border with Syria, we heard about the Turkish policy of an open door for all people with or without papers since 2011. Now after 4 years it is clear that the refugees can’t go back home soon, so since 1 year efforts are made to realize education, employment and social aid. But there are more than 2.800.000 refugees and migrants in Turkey, of which 500.000 in Istanbul alone, and this number is bigger than most European cities. In Kilis, a village near the Syrian border, the population more than doubled from 100.000 to over 225.000 now. There are also all kinds of social problems, for example many people begging on the streets. A small rehabilitation centre near the border just launched a computer course in Arabic for persons with disabilities and persons who cannot meet their needs on their own. And there will be a new national committee for Refugees with Disabilities, EDF and UNHCR are invited to give input.

A question was raised on the EU policy of sending persons back: Is it in line with human rights to replace persons without the consent of the person?

Kirsten Lange of UNHCR was given the floor to respond to this all. She was happy with the information, and acknowledged that persons with disabilities who are left behind at war is a gap, and the lack of statistics on persons with disabilities is another gap. There is an upcoming World Humanitarian Summit where a charter will be made to strengthen the inclusion of persons with disabilities in humanitarian action. A report of Amnesty in Kurdistan found 1% of persons with disabilities amongst refugees, which could indeed mean that persons with disabilities do not arrive. Also access is not the same as support. The number of minor unaccompanied children grows, but they disappear. Sexual abuse for food seems to happen, and clearly, protection is needed.

Regarding the question whether it is in line with human rights to send someone back, there is the issue of non-refoulement, which means a person should not be send back if the person will face danger such as prosecution.

If persons take the risk of travelling, they probably have a good reason for that. All persons are equal, human rights are for all. Eventually we need peace. Let’s not be part of xenophobia.

It had been a very heavy session for me. It was quite tough, to hear the sad situation of refugees and migrants, and to think about sexual abuse and forced removals, it brought back some vivid memories of some personal traumas of being sexually violated in a psychiatric institution at age 16, and running away from the institution, but being brought back by the police who followed orders without listening to my story. I was so powerless. It hurts so much to hear about the female migrants, women and girls, who are in a somehow similar position, being sexually abused, unable to escape, not getting support… It moved me deeply.

After this first day of the meeting, I really needed a moment in my room to calm down. It had been a lot to take in, and I had to separate my personal feelings from the factual things. I felt hurt and forgotten, but I realized that this feeling was enhanced by the pain that had been brought up by the session on migrants. I felt the abuse. It was very disturbing.

The first day of EDFs Board meeting had ended just after 19.00, and then we had a free evening. Most of us decided to get something to eat at Schiphol Plaza, instead of at the Hilton hotel. Me too, after taking a break in my room. I had a nice, relaxed evening, talking to some other participants downstairs and in front of the hotel, and then I decided to go to bed rather on time (midnight), to make sure that I would wake up on time the next morning (with an extra wake-up call).
I made it. The next day I woke up on time, and enjoyed the variety of the breakfast.

On Sunday 13 March 2016, EDFs Board meeting continued from 9 AM onwards.
As a very first thing, the EDF Oracle Award was given to the winner: Caroline Hurley (UK), who developed a mobile application to facilitate contact with caregivers, interpreters and assistants, also see EDFs press release: http://www.edf-feph.org/Page_Generale.asp?DocID=13855&thebloc=34423

After this pleasant start of the day, the EDF Board meeting continued with the financial report, followed by the procedure for the introduction of new EDF members, and an update on the Public Procurement Directive.

After the coffee break, the EDF advisory group on Independent Living & Community Based Services presented a brief definition of independent living, to be adopted by the EDF board members, which was done with a few small changes and additions (including : based on free and informed consent).

The last part of the Board meeting comprised a presentation of the draft programme of EDFs AGA in Dublin, and any other business, which were the resolutions of the Thematic Conference and the role of municipalities. Also a position of EDF on Brexit was adopted: EDF believes in a strong EU, which includes the UK, also see: https://gallery.mailchimp.com/865a5bbea1086c57a41cc876d/files/EDF_Board_Resolution_on_BREXIT_March_2016.pdf

At 13.00 the Board meeting ended, and there was a delicious lunch waiting for us outside the conference room, which offered a nice atmosphere for some final chats and goodbyes. After the lunch, I also left.

On my way back in the train to Eindhoven, I read an article by another author on the project with Family Group Conferencing (FGC) in mental health care (Eindhoven Model) and I was sad, because it didn’t reflect any CRPD-awareness, but rather the old paradigm, while I had tried really hard to make this project into a good CRPD-compliant practice, which seemingly has failed somehow (which I concluded earlier also, considering the final report). I still believe in the model of FGC, but I guess I have learned that it is hard to start something new. By now, I am contemplating about ways to restart an FGC project controlled by users, it could be anywhere where the options are. I don’t want to give up on this idea. But nevertheless it is a painful situation for me as the “spiritual mother of the Dutch FGC-project”. So this was one of the things that seriously occupied my mind directly after the EDF meeting, resulting in delay of this report. But I am ready again, ready to keep on searching for ways to change the situation for persons with psychosocial disabilities.