European Commission's Workforum on UN CRPD - Reisverslag uit Brussel, België van Jolijn Santegoeds - European Commission's Workforum on UN CRPD - Reisverslag uit Brussel, België van Jolijn Santegoeds -

European Commission's Workforum on UN CRPD

Door: Jolijn

Blijf op de hoogte en volg Jolijn

09 Juni 2017 | België, Brussel

Again this report comes much later than usual. Again I had a very intense time, because received the final decision of the Dutch court on my personal case against forced psychiatry (deprivation of liberty and planned severe abuse). This means I will have to go to the European Court of Human Rights, because the Netherlands fails to investigate ill-treatment and torture on children and adults with psychosocial disabilities (also see my personal testimony: )
And of course the rejection by the Dutch court is painful. But I have been able to balance well. I was somewhat prepared for this outcome, since earlier this year I had already received a very painful letter stating that the official advisory views to the court on my case hadn’t changed (also see: ). I will do my best to challenge this further.

So due to this development in my personal case, there has been some delay in writing this report on the European Commission’s Work Forum on the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD). But here it is, finally:

EC Work Forum on UN CRPD

On Thursday evening 18 May 2017, I travelled to Brussels by high speed train. I was personally invited to participate at the European Commission’s Work Forum on the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD) on 19 May 2017, (also see: ) and everything was arranged for by the European Commission, so I had no expenses.
Upon my arrival in Brussels, I first visited some dear friends with whom I had a really nice evening. (Lol, I got a manicure before going to my 4.5 star hotel! What a luxury for an ex-homeless person! It was fun :). After a good rest and a delicious breakfast, I checked-out from the Sofitel Europe, and went to the Albert Borschette Conference Centre next door.

On Friday 19 May 2017, the European Commission’s Work Forum on the implementation of the UN Convention on the Rights of Persons with Disabilities (UN CRPD) started. It was nice to see many familiar people from the European disability movement.

At 9 AM the conference was opened by Emmanuelle Grange, Head of unit Disability and Inclusion, DG Employment, Social Affairs and Inclusion at the European Commission. Then, also Antonella Gatt, Technical attache of the Permanent Representation of Malta to the EU, and Pat Clarke, vice-president of the European Disability Forum (EDF) spoke a word of welcome.

The first session was on: How to asses disability on a human rights base.
Catalina Devandas, UN Special Rapporteur on the Rights of Persons with Disabilities was the first speaker, and elaborated on Disability assessment from a Human rights perspective. It was very interesting. Current disability assessments generally assess impairment or functional limitations, but none is objectively assessing the actual barriers at the individual level as experienced, at the level of support needs. In other words, the current assessment models are mainly medical model oriented, and do not include assessing the actual interaction of the person in life, and the attitudinal and environmental barriers. A CRPD compliant disability assessment model still needs to be developed, and should comply with human rights standards, and not be used to restrict rights, nor be used as a condition to provide access to mainstream universal services, benefits or protection. So it is necessary to rethink about assessments, and develop a tool in line with its purpose, which is not an easy task. Several UN experts are working on a report specifically addressing the issue of social protection and disability.

Anna Lawson, Professor, School of Law University of Leeds, spoke about the impact of the definition of disability in legislation. In many social protection laws, disability assessments are a gateway to entitlement for services and benefits. In Europe, for example, a “capacity-approach” is used to assess work-capacity in percentages, generally based on labelling the person (based on personal characteristics), and additional conditions. These assessments generally focus on what you can NOT do, and not on what you CAN do.

Gunta Anca, Vice-President of the European Disability Forum (EDF) shared her personal experiences describing how any step in her life (such as decisions on education, living arrangements and so on) led to the answer: “ask your doctor”. She explained the importance of having a voice of her own in decisions about her life, such as which education and so on. She explained that under the medical model, she was seen as fully incapable. The social-welfare model then envisioned her in a segregated life in special schools and special houses. The social model is about inclusion, and is about removing barriers. For example, with an electric wheelchair and accessible elevators, she experiences no disability and can participate like any other (but when there are only stairs she feels very disabled again). It was a very powerful and vivid speech.

Greet van Gool, Policy advisor of the Belgian Federal Public Service Social Security, then spoke about the Belgian situation and the recognition of disability benefits. The Belgian system is complex (federal, regional, community level, each with diverse regulations and systems). Assessment is based on the medical model (ICD/ICF), and is done by a doctor. Disability benefits used to be spent on the basis of the degree of independence, but this didn’t stimulate people to invest in progress (which would then lead to income cuts). Since 2003, the new system works with various pillars, such as incapacity, participation and “which efforts are being made”. Yet, since the CRPD Committee in 2014 also criticized the “special support-model”, this is now being changed.

An interesting debate followed with questions from the floor, mainly about the complexity of CRPD compliant disability assessments and social systems, and about power-dynamics. It was really interesting.

Then, after a coffee break, the second session started on: What is done to turn CRPD recommendations into reality - follow-up.

Damjan Tatic, Vice-chairperson of the Committee on the Rights of Persons with Disabilities, explained how the Concluding Observations are followed up by the UN CRPD Committee. The UN CRPD Committee uses certain criteria to identify their recommendations and questions for follow-up, such as whether a particular issue is a major obstacle for human rights, implementability, whether it is feasible and measurable, and whether there is a policy to overcome the issue. He illustrated this with information on specific countries.

Pal Szekeres, Ministerial Commissioner of the Hungarian Ministry of Human Capacities, Department for Disability Affairs spoke about Hungary moving towards the 2nd dialogue with the UN CRPD Committee. He stated that he personally saw the difference in the number of accessible toilets in Budapest, and he mentioned an Hungarian Action Plan, with 11 recommendations for persons with psychosocial disabilities (360 pages). And Hungary would now use the new UN reporting guidelines (LOIPR). It was a bit of a dry speech.
By now, I have seen MDAC’s current activity against horrible neglect, seclusion and restraints in Tophaz institution in Hungary, and I am sad that this issue was not addressed by the Ministerial Commissioner.

Fatima Gracia Salazar,Technical assistant of CERMI Spain, spoke about Spain moving towards the 2nd dialogue with the UN CRPD Committee, and highlighted the campaign against forced sterilization. Last week in Madrid I had seen the deeply moving photo exposition of CERMI Women’s Foundation, comprising a series of powerful images to expose and combat forced sterilization of women with disabilities. Please take a moment to see the exposition:

Sara Brunet, Senior lawyer of British National Human Rights Institution and Chair of ENNHRI’s CRPD Working group, then spoke about the role of Human Rights Institutions in the follow-up of the Concluding Observations. (also see: )

This session on NHRI’s triggered me to raise a question from my personal view, in the capacity of a Dutch DPO leader, since I am having issues with the Dutch NHRI (College voor de Rechten van de Mens). So during the debate time, I raised a question, and I asked: “What if an NHRI doesn’t have the right mind set on certain issues? What if the NHRI uses a medical model approach? How is the A-status for NHRI’s decided on? What can we do?”
Damjan Tatic, and Sara Brunet explained to me that all NHRI’s should comply to the Paris Principles, and any complaints should be framed in the scope of the Paris Principles. It can be good to enter into a dialogue, perhaps with help of other persons. In most situations the status of NHRI’s refers to the degree of resources and staffing.
I remembered my earlier visit to the ICC (International Coordinating Committee of National Institutions for the Promotion And Protection of Human Rights) in Geneva, who had also explained to reference to the Paris Principles in detail to me (also see: )
So I know what I have to do…

Then it was lunch time, and I had a short side-meeting with small group of EDF-members present, to prepare our strategy for input during the plenary session of the Council of Europe’s Committee on Bioethics on 7 June in Strasbourg, on the “Draft Additional Protocol to the Oviedo Convention on Human Rights and Biomedicine concerning the protection of human rights and dignity of persons with mental disorders with regard to involuntary placement and treatment”, also see: . We decided to align our work via email.

After lunch, the third session started, which was about: Article 11 – Protection of persons with disabilities in humanitarian situations in Europe.

The session started with a powerful short video of Nujeen Mustafa, a young girl who fled Syria in a wheelchair and who is advocating for the rights of refugees with disabilities to the EU, see:

Then Diane Kingston, Deputy Director of CBM’s International Advocacy and Alliances (IAA) department, spoke in a video message about the views of the UN CRPD Committee. She spoke about that post-war Europe is changing in geopolitical sense (rights are eroding, right wing is spreading, and many people are pushed to the margins, especially migrants and refugees with disabilities who are the most isolated at the margins of society). The CRPD Committee has issued several recommendations on this, for example to address multiple discrimination (Germany), ensuring access to facilities (Italy) and to ensure support and reasonable accommodation for persons with disabilities in line with the UN CRPD, also in any detention center (Slovenia)

Then Isabela Atanasiu, legal officier of Asylum Unit, DG Migration and Home Affairs of the European Commission, explained more on the EU actions for the protection of persons with disabilities in humanitarian situations, and spoke about EU law, studies and current actions. Persons with “special support needs” are identified on the basis of narratives and personal interviews, and this does not detect all persons with support needs. And then there is the issue of availability of support, and the EU provides support, mainly by clarifying legislative frameworks, sending money and mobilizing advise. I heard something about guidelines “persons with mental disorder need a curator or guardian”. This is surely a point of attention.

Shantha Rau Barriga, Director of Disability Rights, Human Rights Watch, spoke about the findings of Human Rights Watch regarding refugees with disabilities, who are generally invisible without registration and ID, excluded from food, water, shelter, sanitation and education, left behind in attacks, and risk starvation or abuse. Families of persons with disabilities are often struggling, since they don’t want to leave their loved relatives behind, so they are forced to take many risks. Many refugees struggle with psychosocial disabilities, including (severe) post-traumatic stress. It was heartbreaking to hear the testimonies on the video. Shantha highlighted the report of Human Rights Watch on Greece: Refugees with disabilities overlooked, underserved, also see And announced a follow up campaign to pressure the EU to identify refugees with disabilities and ensure access to support and services. Also see:
I fully agree with Nujeen Mustafa: Refugees with disabilities deserve better!

The final speaker was Emanuel Darmanin, Focal Point Office manager of the Office of the Maltese Parliament Secretary for Rights of Persons with Disability and Active ageing, who spoke on the situation of migrants and refugees with a disability, also stressing the need to provide support, including psychosocial support.

At the end of the session, there was an interesting debate, such as on a broader lack of EU standards on support for persons with disabilities, and on possibilities: what can be done.

Of course I think about the immense need of psychosocial support for refugees, yet of course, the worst nightmare would be if medical-model psychiatry would jump in and start pushing their psychiatric drugs and repressive systems. This should definitely be prevented (but unfortunately we see some first signs). We must ACT NOW! Refugees have already been through many horrors, and if nothing is done, they may end up in the horrible European psychiatric systems. So we must make sure there are alternatives put in place. We should look at the possibilities: In fact, we may as well see the refugee crisis as a “blank canvas” to draw a new system of support, without having to fight old models first, so this may give new opportunities.
I had an interesting brainstorm on various ideas with persons of Mental Health Europe, European Disability Forum and Human Rights Watch. We all agreed that the topic of psychosocial support to refugees is an issue that we have to address further.

It had been a very interesting Work Forum, with very useful information and food for thought and action. I was really happy that I had been invited to join this meeting. It was inspiring and motivating. I returned home with new hope for Europe (since the EU for once didn’t seem that bad), as if a new warm breeze came up.

Europe “yes we care”

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rondreizen en ontdekken hoe mensen met psychiatrische problemen overal (over)leven en kijken waarmee we elkaar kunnen helpen.

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