From: Rima Canawati <rima.qanawati@gmail.com>
Date: Sun, Feb 16, 2014 at 11:33 AM
Subject: FW: [IDA_CRPD_Forum] Secretive workshop to develop WHO recommendations on competence assessments for adolescents
To: cbm-regional-advisory-committee-emr@googlegroups.com
From: IDA_CRPD_Forum@yahoogroups.com [mailto:IDA_CRPD_Forum@yahoogroups.com] On Behalf Of e.kofmel@autisticminority.org
Sent: Saturday, February 15, 2014 7:58 PM
To: IDA_CRPD_Forum@yahoogroups.com
Subject: [IDA_CRPD_Forum] Secretive workshop to develop WHO recommendations on competence assessments for adolescents
Dear all,
I am concerned and wonder what others might think about a secretive workshop that is set to develop WHO "recommendations for the assessment of adolescents' competence in clinical care". The workshop will take place 17-19 June 2014 at the Brocher Foundation in Geneva and according to the announcement "[t]hese recommendations will be widely disseminated by the World Health Organization in European countries and other parts of the world". Civil society is not to be consulted.
Here's the link:
Full workshop description: "The assessment of competence among adolescents, whether in the context of clinical care or research is difficult: it depends heavily on the legal, family, religious and cultural context, the complexity of situations posing ethical dilemnas as well as the bio-psychosocial development of the adolescent. As in many countries, it is accepted that even mino[r] adolescents have the competence to make autonomus decision as long as they can be considered as competent, it is the responsibility of the health care provider to assess his young patient's competence and to what extent, in any given situation, the patient can make informed decision about his/her health. There are currently no formal recommendations and guidelines that guide the health care professional as how to assess the competence of a young person in a given situation. The objective of the workshop is to develop a set of recommendations which will assist health professionals in evaluating the competence of their adolescent patients within various clinical settings. These recommendations will be widely disseminated by the World Health Organization in European countries and other parts of the world. Although the focus of the meeting is clinical care, most recommendations will be applicable to the assessment of competence in the area of human research on/with adolescents"
One of the co-organizers listed on the Brocher website is the chair of the Committee on the Rights of the Child (CRC), Dr Jean Zermatten. A few days ago, I wrote to him and another co-organizer, an American professor who consults for the WHO, asking for clarification:
---------- Forwarded message ----------
From: Erich Kofmel <e.kofmel@autisticminority.org>
Date: 12 February 2014 13:04
Subject: Brocher workshop "Development of Recommendations for the Assessment of Adolescents' Competence in Clinical Care"
To: jean.zermatten@childsrights.org, rblum@jhsph.edu
Dear Prof Blum,
dear Dr Zermatten
We recently came across the announcement of the workshop you will be co-organizing at the Brocher Foundation in Geneva in June 2014, "Development of Recommendations for the Assessment of Adolescents' Competence in Clinical Care".
Our NGO, Autistic Minority International, based in Geneva, seeks to advance autism self-advocacy at and through the UN, WHO, and human rights treaty bodies, including the self-advocacy of autistic children in care and support settings. For this reason, the Brocher workshop seems of great relevance to us.
We are however concerned about your statement that "These recommendations will be widely disseminated by the World Health Organization in European countries and other parts of the world" as we can see no path outlined for civil society input in the development of the recommendations. The workshop seems somewhat secretive, but with far reaching consequences for children who may all too easily be deemed "not competent" because of their autism, even though they would be perfectly capable of advocating for themselves if given the necessary assistance and reasonable accommodations. This is particularly of concern to those autistic children in long-term care.
We would greatly appreciate the possibility to participate in this workshop, but can't find any information on how we might do so. Can you please assist?
Alternatively, please let us know how civil society might contribute to the development of these recommendations *prior* to them being circulated by the World Health Organization.
Thanks for your understanding. We look forward to hearing from you.
Sincerely,
Erich Kofmel, President
Autistic Minority International
e.kofmel@autisticminority.org
www.autisticminority.org
While I did not receive any reply from Dr Zermatten, the American professor forwarded my e-mail to a professor at the University of Lausanne who apparently is the main organizer. He replied today:
---------- Forwarded message ----------
From: Michaud Pierre-Andre <Pierre-Andre.Michaud@chuv.ch>
Date: 15 February 2014 16:19
Subject: Autistic Minority International: answer
To: "e.kofmel@autisticminority.org" <e.kofmel@autisticminority.org>
Mr. President,
I would like to thank you for your interest in our meeting. I am myself the initiator of the meeting, as part of a mandate given to my institution (see below) by the World Health Organization. The question of the participation of the civil society in any of the activities pertaining to children and young people is indeed important. However, the meeting as it is planed gathers a limited number of highly skilled professionals from various fields, including lawyers, physicians, developmental psychologists, sociologists, and the number has been limited to 20. Also, we don't see why we should invite a representative from the field of Autism, and not from the field of diabetes, cystic fibrosis, neuromuscular disorders etc. Also, our focus is not that much on children with developmental disabilities, but much more in the field of sexual and reproductive health of adolescents who don't suffer from any chronic disorder.
What I suggest is that you contact me after the meeting, some time in July. I will be happy to give you a feedback of the meeting and get your impression.
On a more personal tone, I would like to say that I can easily understand your interest for the rights of children/adolescents with Autism and ASD, as I am currently in charge of the selection of a Professor who will be the director, in our Faculty & University Hospital, of the first autism center to be created (to my knowledge) in Switzerland. Within this process, I have had numerous and excellent exchanges with "Autisme Suisse Romande".
With best regards
Prof. Pierre-André Michaud, MD
Vice Dean for Curricular Affairs
Faculty of Biology and Medicine
Chief
Unité multidisciplinaire de santé des adolescents
CHUV
1011 Lausanne
TEL: 41(0)21 314 37 60 FAX: 41(0)21 314 37 69
e-mail: Pierre-Andre.Michaud@chuv.ch
Have a look at our websites:
www.umsa.ch
www.euteach.com
Not satisfied with this evasive response, I wrote back:
---------- Forwarded message ----------
From: Erich Kofmel <e.kofmel@autisticminority.org>
Date: 15 February 2014 18:01
Subject: Re: Autistic Minority International: answer
To: Michaud Pierre-Andre <Pierre-Andre.Michaud@chuv.ch>
Cc: jean.zermatten@childsrights.org, rblum@jhsph.edu
Dear Prof Michaud
Thank you for your e-mail.
Unfortunately, it confirms our impression that your planned WHO recommendations pay insufficient attention to those children/adolescents that (as you say) "suffer from any chronic disorder". Why exclude anyone?
Children with disabilities and other chronic conditions are just as competent to be heard in matters of their own care as others. Any recommendations should stress this and highlight the many ways in which such children/adolescents can be assisted in expressing their wishes and preferences (for example, through the use of assistive devices).
Sexual and reproductive health is just as important to adolescents with disabilities (even autistics) as to others. Excluding them is wrong and short-sighted.
This is precisely why it is so important that WHO recommendations that will affect so many not be developed without the widest possible input from civil society.
Regarding the planned autism centre at your university, we would equally advise you to seek input not just from parents' organizations such as Autisme Suisse Romande, but also from autistic self-advocacy groups. For us, unlike for most parents of autistic children, autism is not something to be cured, it is our identity and deserves support and acceptance as a neurological difference that is just as valid.
Thanks for your understanding.
Sincerely,
Erich Kofmel, President
Autistic Minority International
e.kofmel@autisticminority.org
www.autisticminority.or
If you share our concerns about these planned WHO recommendations and the lack of civil society input, please contact the co-organizers of the workshop and demand to be heard.
Here's their e-mail addresses:
Prof Pierre-André Michaud (Lausanne): Pierre-Andre.Michaud@chuv.ch
Prof Robert W. Blum (Johns Hopkins): rblum@jhsph.edu
Dr Jean Zermatten (CRC): jean.zermatten@childsrights.org
Prof Lazare Benaroyo (Lausanne): Lazare.Benaroyo@unil.ch
Alternatively, please use whatever WHO connections you may have to ensure that civil society gets a say in this.
Thanks,
Erich
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