On November 22-23, 2017, the Japan National Group of Mentally Disabled People (JNGMDP) hosted a TCI Asia plenary to discuss the current practice and the future of peer support in the region. The meeting was supported by the Open Society Foundation, International Disability Alliance, Japan Disability Forum and Bapu Trust for Research on Mind & Discourse. It included a peer exchange, a multi-stakeholder exchange with officers from Health and Social Affairs, mental health professionals, human rights lawyers, etc., and a workshop that combined the Open Dialogue method with the use of rhythm. Participants included representatives from nine Japanese provinces, members of JNGMDP and TCI Asia members from Indonesia, Sri Lanka, Pakistan, South Korea, Thailand, Taiwan, Hong Kong, China and India.
Peer support in Japan and Asia
Peer support is not new to Asia. In high income countries such as Hong Kong, Japan and China, peer support as understood in the west has been in existence at least for two decades. In other places such as Thailand, it is fast developing with western training programmes coming through, while in other places such as India, Indonesia and Philippines, indigenous models developed by persons with psychosocial disabilities exist. This development is throwing up some acute dilemmas of co-optation by the mental health system.
In Japan, the government is considering peer support as a way to decongest the institutions and provide community support. However, this has been more in terms of ensuring the stabilisation of medical treatment and associated decision making functions, working with families, psycho-education etc.
In low and middle income countries such as Indonesia, Pakistan and India, the experience of peer support is more about working with communities from the location of Disability Inclusive Development, going beyond medical role, and towards access to a variety of support systems for enabling living in communities.
In nearly all countries, use of art activities is a common feature of peer support programs. Music, dance, performance, theatre, etc. as well as participation in physical activities, exercise, running, Paralympics, gardening, etc. are being done in a way to bring people together. Funding support from social welfare is available in some countries for some of these activities.
Dilemmas and potential
Key questions were raised at the event about peer support: Is the outcome of the program strengthening mental health treatment or is it to mobilize and strengthen support in the community? Is a peer supporter more like a personal assistant or like a psychiatric nurse, social worker or attendant staff?
There must be discernment whether peer support is being used for recovery within a medical set up or for inclusion within a community set up. Are peer supporters working alongside communities, preparing the communities for inclusion? Or, are they working within the ‘clinic’ or ‘institution’ setting, alongside psychiatrists and mainstream service providers, ‘filling the treatment gap’ as lay counsellors and underpaid or unpaid volunteers? In high income countries of Asia, peer supporters seem to be ‘filling a gap’, and are not comfortable with being deskilled and their experience not being recognized or validated.
Several peer supporters reported being trained to give injections and medicines and to ensure compliance. Some were asked to share the information given in confidence within the trusting peer relationship with psychiatrists. These raise several ethical questions and questions about the respect and dignity of the peer worker in doing those things which they are exactly against. The Japan Peer Support Association is creating a code of ethics among peer supporters to say ‘no’ to doctors. A view was expressed that peer supporters should give some information about the side effects of drugs to the person with a disability.
In some places in Asia, support staff are paid but peer supporters are not. For many people, it is a part time or full job often without any payment. Others are working closer with communities and families and here, too, it may be voluntary or stipend-based. It is evident that where peer support is well established (e.g. Hong Kong), being a user has led to more co-optation by the system, not less.
However, unorganized peer support activities are welcomed as community development. It is happening in different low and middle income countries in Asia (India, Indonesia, Philippines, Thailand, Nepal, etc.). Peer support is a felt training need all over the region. Different small and big groups of persons with psychosocial disabilities are practising it. However, locally adapted, culturally appropriate peer support models, in compliance with the CRPD, need to be developed for sustaining the movement and expanding it through the region. There is a crying need for a regional training program and establishing peer partnerships throughout Asia.
Acknowledgement
TCI Asia would like to thank the Open Society Foundation, International Disability Alliance, Japan Disability Forum, Bapu Trust for Research on Mind & Discourse for financial support and facilitation; Ito Kasumi for tireless support work; and Shivani Gupta for overall coordination and support for this event.
TCI Asia (Transforming communities for Inclusion of persons with psychosocial disabilities, Asia) is a regional DPO of Asian persons with psychosocial disabilities. Our focus is on Article 19 (Living independently and being included in the community), expanding on the pedagogy and manifesting the practice of it in Asia. TCI Asia has 15 country members in Asia, with alliance of national groups of persons with psychosocial disabilities, as well as individuals; with supporting cross disability organizations and a number of technical support agencies. We are now making strong working linkages in the Pacific Islands countries. Our vision is “Full freedoms and enjoyment of all human rights, and the full inclusion of persons with psychosocial disabilities, in compliance with the CRPD”.
