EDF General Assembly 2018 in Vilnius - Reisverslag uit Vilnius, Litouwen van Jolijn Santegoeds - WaarBenJij.nu EDF General Assembly 2018 in Vilnius - Reisverslag uit Vilnius, Litouwen van Jolijn Santegoeds - WaarBenJij.nu

EDF General Assembly 2018 in Vilnius

Door: Jolijn Santegoeds

Blijf op de hoogte en volg Jolijn

28 Mei 2018 | Litouwen, Vilnius

On Friday 25 May 2018 I travelled to Vilnius, Lithuania to join the Annual General Assembly (AGA) of the European Disability Forum (EDF, www.edf-feph.org ) on behalf of the European Network of (Ex-) Users and Survivors of Psychiatry (ENUSP, www.enusp.org ). I arrived in the afternoon, and Lina came to pick me up and accompanied me to the Radisson Blu Hotel.
At 16.30, a brief Board meeting started, which was held in advance of the AGA. We were informed of some changes to the programme of the AGA. Basically, the representatives of the Lithuanian governments (the Prime Minister and the Minister of Social Affairs and Labour) had informed the organizers that they would not come. Replacement had been sought, and a member of parliament would be willing to come and speak. At 17.30 the board meeting ended.

While I was waiting for my ENUSP-colleagues, Stephanie Wooley and Lina Ciuksiene, I enjoyed watching the skaters in the skate-park nearby. Around 19.30 Stephanie and Lina arrived and we went to have a nice Chinese dinner together. It was close to midnight when we came back at the hotel, and we went to rest.

On Saturday 26 May 2018, at 9 AM the EDF AGA started with a word of welcome by Dovile Juodkaite, president of the organizing host organization, the Lithuanian Disability Forum. Followed by 3 short video clips for the occasion of 100 years of independence of the Baltic states (Lithuania, Latvia and Estonia).
Then, we were welcomed by the Disability Advisor on behalf of the Prime Minister of Lithuania, Juozas Bernatavicius, who highlighted the importance of the UN Convention on the Rights of Persons with Disabilities to steer improvements in the lives of persons with disabilities.
He was followed by a Member of the Lithuanian Parliament, Justas Dziugelis, who stressed the importance of equality and unity to advance the rights of persons with disabilities.
Then Yannis Vardakastanis, EDF President concluded the opening session, by stressing the importance of the upcoming elections for the European Parliament next year, and called for persons with disabilities to run for election, which is a potential way to secure the attention for the rights of persons with disabilities in the EU.

Around 10 AM, the Thematic conference about the EU Web Accessibility Directive took place, followed by case presentations on the transposition of the Directive into national legislations, by Denmark, Spain, Slovenia, Lithuania.

It was quite interesting, but also quite technical due to the amount of technical details on the standardization of web-accessibility into European norms: EN- and ISO-norms (To summarize: W3C recommendation of 2008, with 3 WAI guidelines (WCAG, ATAG, UAAG ), and WCAG 2.0 with different levels (A, AA, and AAA) and their requirements and success criteria. Norms adopted in EN 301 549, ISO 40500, JIS 8341, UNE 139803 (and EN 301 549 v.1.1.2) , and version 2.0 of the W3C Recommendation (Web Standard) is currently in its test-phase. All these norms, standards and requirements have to implemented and transpositioned in national legislation. There is an EDF toolkit being developed for this.

Of course web-accessibility is an important topic (accessible information), but I also really agreed to some criticisms in the hallway, questioning why the accessibility of websites and apps is the focus, and not e.g. accessibility of education, work places and so on, which seem to be the ‘bigger issues’ in the lives of persons with disabilities..
Personally I would suggest that the campaign of European NGOs against the Council of Europe’s “Draft Additional protocol to the Oviedo Convention” would need serious attention in the plenary meetings, since forced treatments and institutionalization actually costs lives…

The campaign against the Oviedo Protocol is on the agenda of EDF (see http://www.edf-feph.org/newsroom/news/disability-organisations-urge-council-europe-withdraw-addition-protocol-oviedo )
Yet, overall, EDF seems to focus more on the activities of EU, than on the activities of the Council of Europe, which leads to the situation where I actually start to get the feeling like the burning issues of persons with psychosocial disabilities, and persons with intellectual disabilities, are quite marginalized within EDF (since these issues are mainly dealt with by the Council of Europe, and the EU has no official competence on health care, justice, and the European Conventions on Human Rights - which are in need of change in light of the UN CRPD). I really hope that the problem of the Draft Additional protocol to the Oviedo Convention will be addressed as a priority in the next meetings of EDF, so that all the members can get the knowledge to lobby on this theme, so we can stop the Draft together.

Forced treatments and forced institutionalization are in violation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD), and up to today, this causes huge suffering and tragedy in the lives of persons with disabilities and their families, by segregation, deprivation of legal capacity, arbitrary detention, and practices that amount to torture and ill-treatment (e.g. forced drugging, solitary confinement and restraints, to name a few), all with impunity, since the Council of Europe’s Draft Additional protocol to the Oviedo Convention allows for these practices to continue, despite it being an outright violation of the UN CRPD. We must absolutely stop this draft protocol, and prevent it from being adopted, as it would create conflicting standards for European Member States, and it would set the wrong norms for the human rights of persons with disabilities everywhere in Europe.

Mental Health Europe has launched a video, #WithdrawOviedo - Summary of contributions to the UN consultation on Human Rights and Mental Health, to strengthen the European campaign of NGOs against the Council of Europe’s Draft Additional protocol to the Oviedo Convention. You can see the 3-minute video via this link: https://youtu.be/cHMQq7eyvYE

For more information on the European Campaign of NGOs against the Council of Europe’s Draft Additional protocol to the Oviedo Convention, also see the statements on the websites of :
ENUSP : http://enusp.org/2018/04/18/enusp-started-campaign-against-the-draft-additional-protocol-to-the-oviedo-convention/
MHE : https://mhe-sme.org/statement-of-enusp-and-mental-health-europe-on-additional-protocol/
EDF : http://www.edf-feph.org/newsroom/news/disability-organisations-urge-council-europe-withdraw-addition-protocol-oviedo
(there are many more NGOs/DPOs involved in this campaign, e.g. also Autism Europe and Inclusion Europe)

Around 12 o clock, the AGA continued with a session on the input that has already been sent by EDF to the UN CRPD Committee, on CRPD article 4.3 and 33.3, on which the UN CRPD Committee is preparing a General Comment (to explain the scope and substance).

In the submission of EDF on CRPD article 4.3 and 33.3, on page 3, EDF recommends when defining the term “representative organisations” to include a paragraph which would allow for the inclusion of organisations composed and governed by persons with disabilities and family members, to ensure that organisations of parents or family members of persons with intellectual disabilities, autism, dementia and those in need of a high level of support, are fully included in the disability movement

ENUSP is of the opinion that family-representation should never replace the role of persons with disabilities themselves, and should not be considered as a ‘representative organizations” of actual persons with disabilities (or DPOs). It would be more appropriate to create an actual category, such as “family representative organizations of PWD”. Family organisations continue to be overly represented in most countries compared to organisations of PWD. As long as family-representatives continue to take this role of representing persons with disabilities, and other bodies and organizations accept this as “meaningful inclusion”, the persons with disabilities themselves are not actually missed. But when the family organizations are left out or put back in the support position they should be in, it becomes clear who is missing in this room.

The draft of EDF’s submission is already submitted to the UN CRPD Committee, (as a draft, since the AGA was coming up), and it is displayed on their website. In my opinion this position of EDF is harmful to the reputation of EDF. Even while the position is a draft, and the final EDF position may contain changes (also on this particular point on family-representation). Nonetheless, there is a risk that people may not realize that this is a draft position which can be changed, and/or they may not come back in a later stage to find a newer version of the EDF position. And I am worried that this draft position of EDF can cause distrust…
I personally really regret that I didn’t have the time to take a closer look at this position paper, and I wasn’t aware of this painful situation at an earlier stage. So now, in many ways, I feel embarrassed by this situation. (maybe this awkward situation could have been prevented?)

Anyway, before I could mention this, UN CRPD Committee member Stig Langvad (Denmark) gave a presentation on the development of the General Comment on CRPD article 4.3 and 33.3, and he stated that he himself disagreed with EDFs position on the role of family, and he was of opinion that the voice of persons with disabilities cannot be substituted by family members, because that would be a violation of the right to legal capacity. The focus should be on providing support to exercise legal capacity. Stig Langvad said he expected that the CRPD Committee would not deviate from the universal right to legal capacity, and that it is likely that family organizations may not be mentioned on the same level as organizations of persons with disabilities. (ENUSP applauded for this position).

In the plenary discussion with the EDF members, I then still made the above remarks on behalf of ENUSP, and stressed that ENUSP fully agrees with UN CRPD Committee member Stig Langvad.

Around 13.00 it was lunch time, during which the National Disability Councils voted amongst themselves to fill the vacancy in the EDF board. Thuridur Harpa Sigurthardottir of the Organisation of Disabled in Iceland was elected.

After the lunch break, at 14.30, there was a workshop on the European Structural Funds.
First it was explained that the UN Convention on the Rights of Persons with Disabilities (CRPD) serves as a frame for European Funds, so any practice that violates the UN CRPD cannot be funded with EU money. This is called the ex-ante conditionality for the use of European social and structural funds. This means that EU funds can no longer be used for involuntary treatments, institutionalization and segregation, and sanctions may apply in the case of violation. Monitoring the EU-money-flow is quite complex for NGOs, but it has a huge potential of pushing member states to change their practices (as they say “money talks”).

(for more information on the conditionality for European funds, you can read these older posts:
and: http://punkertje.waarbenjij.nu/reisverslag/4825744/european-commission-work-forum-crpd-implementation )

Mr. Marius Vascega, responsible for economic management, Representation of the European Commission Office in Lithuania, first delivered a statement on behalf of the government of Lithuania,
And after that, he spoke as himself on linkages between EU Funds and economic governance in Lithuania.
This was followed by reports from Greece, Italy, Latvia and Spain.
The session was concluded with the adoption of the EDF Resolution on the European Structural Funds.

At 16.30 there was another coffee break. I had suggested to have a meeting in the coffee break on the Council of Europe’s Draft Additional Protocol to the Oviedo Convention, and An-Sofie of EDF had organized this. We met with about 10 people in the hallway, to discuss further strategies and steps to be taken in the campaign of European NGO’s to stop the draft. It was a very interesting brainstorm session, which resulted in many concrete ideas.
We also heard that apparently, and sadly, Portugal is NOT against the Draft Additional Protocol (it seems that some ‘fake news’ had been circulating). So our compliments to Portugal made at the OHCHR in Geneva can be withdrawn…. (a real sad reality for us. We need countries to stand up for the UN Convention on the Rights of Persons with Disabilities).

At 17.00 the AGA continued (and the 10 experts of the “Oviedo campaign group” all were a bit late, since our discussion had lasted a bit longer)

There was a session on the European Pillar of Social Rights, which was proclaimed on 17 November 2017. With the Social Pillar, there is now a new tool called the Social Scoreboard to monitor the implementation of the social rights in the EU. (You can see the Social Scoreboards of the EU countries at the website of the European Commission: http://ec.europa.eu/eurostat/web/european-pillar-of-social-rights/indicators/social-scoreboard-indicators )

The final session of the day was on Trends in Disability Assessment and Determination in Europe , with case presentations of Lithuania, Portugal, Croatia and the European Deafblind Union (EDbU, who stressed that the recognition of deafblindness as a disability itself is flawed, because often the person is considered as primarily either deaf or blind, but not as deafblind, which causes a string of problems and barriers).
It was an interesting session, which caused a lot of response in the room , even though it had been a long day. I fully agree that the issues of disability assessments, and consequently the entitlement to support and incomes, is a very actual and important topic (e.g. considering the severe cuts in disability incomes and support, which happen across EU countries). This indeed deserves to be prioritized. The discussion on this topic wasn’t finished yet, but due to time constraints, it was then postponed to the next day.

At 18.00, day 1 of the AGA was closed, and all participants were invited to join the guided tour, arranged by EDF and LDF, at the Duke’s Palace, where we learned more about the history of Lithuania. Then there was a very delicious evening dinner buffet, with a very impressive and modern a capella choir, and Stephanie, Lina and I had a great and inspiring time together.

And on the “miracle spot” in front of the cathedral nearby, I made a wish that the Oviedo Protocol will be stopped.

Sunday 27 May was the second day of the EDF AGA. It started at 9 AM with the continuation of the discussion on Disability Assessment.
This was followed by an update on the developments around the proposed European Accessibility Act and complimentary accessibility legislation.

The meeting continued with the organizational matters of EDF: discussing the financial issues, the adoption of EDF corporate sponsorship guidelines, EDF final accounts of 2017 and EDF budget for 2019. Followed by the activity report 2017, membership issues, and update by EDF Youth Committee.

Under the final session (any other business) the 3-minute video was displayed plenary: #WithdrawOviedo - Summary of contributions to the UN consultation on Human Rights and Mental Health, to strengthen the European campaign of NGOs against the Council of Europe’s Draft Additional protocol to the Oviedo Convention. You can see the 3-minute video via this link: https://youtu.be/cHMQq7eyvYE

After the session, I had to arrange my room (there had been some mix up), but it got sorted out, and then I dropped my work-materials in my room. Stephanie had already left to get her flight back to France, and I went along with Lina and her friend Virginie, to Lina’s place, where she cooked us a very nice meal. Lina had invited some of the users/survivors which she is in contact with, and we arranged to meet during the afternoon and evening. Lina and I went for a walk, on the compounds of the psychiatric institution in Vilnius (we did the same in 2016), and then strolled through town, seeing the city and the people. It was a really nice day.

I was back at the hotel around 23.00, since I had an early flight on Monday morning, back to the Netherlands, to go home for a few hours, and then continue my trip, heading to Brussels for the European Commission Work Forum on the UN CRPD.

It had been a great experience in Vilnius.

  • 28 Mei 2018 - 15:20

    Sean Crudden:

    Thanks, Jolijn. Grand report!

  • 29 Mei 2018 - 22:53

    Jolijn Santegoeds:

    There was confusion about Portugal's position on the Draft Additional Protocol to the Oviedo Convention on involuntary treatment and placement of "persons with mental disorder unable to consent". The rumour was that they did not vote against it at the recent DH-BIO meeting on 24 May. But today I heard that they did inform OHCHR some time ago in writing that Portugal would not support the draft. So now we think they abstained from voting. And that is still positive.

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