REPORT ON MEETINGS:
INTERNATIONAL DISABILITY ALLIANCE
and UN PANEL OF EXPERTS

New York, February 2000

Karl Bach Jensen (Denmark) and Mary O'Hagan (New Zealand), members of the WNUSP interim committee, represented WNUSP at both meetings.

Overall, it was a successful series of meetings and some progress was made in getting support on the issue of forced treatment from the International Disability Alliance and the UN panel of experts.

Meeting of the International Disability Alliance (IDA)

The IDA was established in Capetown in 1999 and is an alliance of the major worldwide organisations run by and for people with disabilities. Members include Disabled Peoples' International, Inclusion International, World Blind Union, World Federation of the Deaf, World Federation of the Deafblind and World Network of Psychiatric Users and Survivors of Psychiatry.

IDA was set up to strengthen the voice of people with disabilities at the international level and to network and collaborate on common issues. Originally IDA was set up as an alliance between the presidents of the organizations. At this meeting the decision was made to formalize IDA as cooperation between the organizations, as not all of them, including WNUSP have presidents.

Most of the meeting dealt with strategies to highlight and improve the situation of people with disabilities through different UN bodies.

Although WNUSP isn't yet formally established as a worldwide organisation of national and local structures, we felt in good company. Some of the other disability organisations are very well established and their leaders were willing to listen and to accept our views. This was very different from dealing with professionals from NGOs in the mental health field.

Meeting of the UN Panel To Monitor the 'Standard Rules'

The panel is made up of representatives from the major international disability organisations such as World Blind Union, Disabled Persons International, World Federation of the Deaf, Rehabilitation International, Inclusion International and World Network of Users and Survivors of Psychiatry.

The role of the panel is to monitor the implementation of the UN Standard Rules for the Equalisation of Opportunities for Persons with Disabilities, by its member states. This document was published by the UN in 1993. It has the support of the international disability organisations but it is not binding on member states. The Rules recommends how member states should equalise opportunities for people with disabilities in the areas of:

In 1995 the Panel was established to monitor how member states are implementing the Rules. It is chaired by Bengt Lindqvist who is a Swedish Member of Parliament with a disability. Bengt has traveled extensively to promote the Rules to governments, advise them, and to liaise with the UN, its agencies and international non-government organisations.

The monitoring project has been under-funded and the panel has had to be selective about which of the Rules it monitors. In the past four years questionnaires have been sent, to member states asking them to report on their progress implementing the Rules on education, employment, medical care, rehabilitation and support services. This has been done with the assistance of other UN bodies such as International Labour Organisation and World Health Organisation. There has generally been a good response rate to the questionnaires but the results show that governments need to do a lot more to equalise the opportunities for people with disabilities, especially in some of the 'developing' countries.

The panel usually meets once a year to advise Bengt Lindqvist on his work. The initial monitoring period of three years was extended to six years by the UN.

The full minutes of the panel meeting are attached (see attachment: panelmin.rtf) During the week of the panel meeting Bengt Linqvist gave his second three year report and recommendations to the Commission on Social Development which was also meeting at the UN headquarters in New York. He requested that the UN extend the monitoring period for another three years. (a hard copy of the report can be ordered through Bengt's office un-spec.rapp@telia.com)

Bengt's report to the UN mentioned the urgent need for WNUSP to get financial support. Due to a miscommunication the report also praised the UN Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care gopher://gopher.un.org/00/ga/recs/46/119 These principles have been heavily criticised by the user/survivor movement for their endorsement of forced treatment. Karl Bach Jensen and Mary O'Hagan prepared a statement opposing this aspect of the UN principles. The statement was approved by the panel and attached to the minutes of the panel meeting (see Appendix 1).

There was also general discussion at the meeting about options for updating the Standard Rules to include the gaps identified. Karl and Mary prepared a statement for the panel on the gaps in the Standard Rules document in relation to people with psychiatric disabilities, including the lack of reference to forced treatment (see Appendix 2)). The panel decided that WNUSP and Inclusion International should finalize the statement into a draft letter for the UN Commission for Social Development. The letter is meant to deal with what must be done to improve the situation of persons with developmental and psychiatric disabilities.

The IDA members at the panel meeting agreed to add the following lines in their resolution to the UN Commission on Human Rights:

"IDA further supports the position of the World Network of Users and Survivors of Psychiatry that the UN Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care (A/RES/46/119 of 18 February 1992) be reviewed with particular reference to Principle 16 on involuntary admission and Principle 11, Paragraph 6 - 16 on consent to treatment: The involuntary admission and the waving of the right to informed consent being a violation of a persons human rights"

The rest of that resolution suggests the Commission to organize a seminar and to establish a working group on disability and human rights.

WNUSP meeting with Akito Ito on the UN Voluntary Fund

Akito Ito works for the Commission of Social Development at the UN, which administers the Voluntary Fund on Disability. We talked with Akito about the possibility that WNUSP could apply to the Fund for financial support. However we learned that the Fund does not support organisations in their operational costs but to do development work in developing and transitional countries. WNUSP will not be able to apply to this Fund for initial or operational costs but it may be a good source for project work we might want to do. Akito has a list of private foundations that could provide initial funding, which we are seeking from her.

WNUSP consultative status with UN

Karl and Mary collected an application for WNUSP to apply for consultative status with the UN so that we can have a formal process for bringing our concerns to the UN.

WNUSP meeting with Jerry Mindes, International Working Group on Disability and Development

The IWGDD is composed of international disability donor and development agencies as well as international disability organisations and is coordinated by Jerry Mindes. It meets twice a year to inform development and donor agencies on the needs and concerns of people with disabilities. This could be a good forum to WNUSP to get its issues across to influential people and agencies and to make contact with agencies that may be in a position to give us financial support. The last meeting was held in Geneva on 4 and 5 May but WNUSP had no funding to send a representative. We wrote a letter to IGWDD to be tabled and discussed at the meeting, introducing ourselves and asking for technical and financial support.

WNUSP constitution and plans

In between the meetings Mary and Karl also spend some time to discus how to go on with formalizing and building WNUSP as a worldwide federation of national and local user/survivor organizations.

"Principles for the Protection of Persons with Mental Illness and for the Improvement of Mental Health Care" adopted by the General Assembly in its resolution 46/119 of 17 December 1991.

The World Network of Users and Survivors of Psychiatry (WNUSP) supports most of the Principles but has grave concerns about Principle 16 - Involuntary Admission and Principle 11, paragraphs 6 to 16 - Consent to treatment.

According to Principle 16 a person may be involuntarily admitted to or retained as an involuntary patient in a mental health facility if a qualified mental health practitioner determines that he/she has a mental illness and considers:

• That, because of that mental illness, there is a serious likelihood of immediate harm to that person or to other persons;

• That, in the case of a person whose mental illness is severe and whose judgement is impaired, failure to admit or retain that person is likely to lead to a serious deterioration in his or her condition or will prevent the giving of appropriate treatment that can only be given by admission to a mental health facility…

According to Principle 11 treatment may be given without the patient's informed consent if the following conditions are satisfied:

1. the patient is held as an involuntary patient;
2. the patient lacks the capacity to give or withhold consent or, having regard to the safety of the patient or others, unreasonably withholds such consent;
3. an independent authority decides treatment is in best interest of the patient's health needs.

WNUSP believes that involuntary admission and the waiving of the right to informed consent, is in most instances a violation of a person's human rights. It can cause extreme distress and mistrust of services that should provide relief and safety for people. The treatments used can cause irreversible damage to brain and other parts of the body.

We also note that the Principles appear to legitimize treatment without the patient's consent, only if she/he is involuntarily admitted to a psychiatric facility. This principle has been contravened in various legislatures in recent years, with the introduction of compulsory treatment in the community - outside mental heath facilities.

WNUSP plans to analyze the Principles more fully in consultation with its membership. It should be noted that the Principles were developed without significant involvement by psychiatric users and survivors. We believe this reduces the credibility of the Principles and that a review of the Principles is urgently needed.

Mary O'Hagan and Karl Bach Jensen
Interim committee members, World Network of Users and Survivors of Psychaitry (WNUSP)
WNUSP representatives, International Disability Alliance.
New York, 9 February 2000

1. The Standard Rules on the Equalization of Opportunities for Person with Disabilities

The Standard Rules were developed with less involvement of people labeled with psychiatric disabilities than other disability groups. As a consequence the Rules do not fully reflect the concerns, rights and needs of users and survivors of psychiatry. For instance:

Rules 2 - Medical Care, and 15 - Legislation, do not address the rights of persons experiencing psychiatric/psychosocial disabilities to exercise their self-determination by refusing treatment or admission to a psychiatric facility.

Rules 4 - Support Services, 5 - Accessibility, 10 - Culture, and 11 - Recreation and Sports, refer to technological devices, interpreters and physical access but do not refer to the removal of the social barriers experienced by people with psychosocial disabilities.

Rule 8: Income Maintenance and Social Security, does not adequately address the problems of the transfer off and on income maintenance created by the episodic nature of /psychosocial disability.

WNUSP recommends that these gaps be addressed in any future review of the Standard Rules.

2. The World Network of Users and Survivors of Psychiatry - Development Issues

The World Network of Users and Survivors of Psychiatry (WNUSP) did not become involved in UN disability matters until the Panel of Experts to monitor the implementation of the Standard Rules was formed in 1995. WNUSP is less developed than the other international disability organizations on the panel. The network is currently developing into a legally incorporated organisation. But it urgently needs financial and technical assistance to achieve this, to strengthen it's involvement in any future monitoring of or amendments to the Standard Rules, and to be active in other UN matters. There is a particular need for WNUSP to expand its memberships to psychiatric users and survivors in more developing countries and countries in transition.

Mary O'Hagan and Karl Bach Jensen
Panel member and observer, Panel of Experts on the Standard Rules
Interim committee members, World Network of Users and Survivors of Psychaitry

New York, 9 February 2000