Revisiting the 15 psychosocial rehabilitation principles: some consumer - focused pathways to the future.by Allan Pinches, from a featured address to the VICSERV conference on July 27, 2000.
When I first encountered the 15 internationally accepted principles of psychosocial rehabilitation, I was struck by the sense that these were worthy ideas but they were couched in rather coldly clinical language. Mental health consumers seemed to be depicted with a sense of "other-ness" and psychosocial rehabilitation seemed to be something done "to" people rather than with them.
Words such as so called "people with psychiatric disabilities" who need to learn "skills" to "improve their level of functioning" in a process of "growth from dependency to independence" and the need to watch for warning signs of "decompensation or dysfunction" have a bitter flavour for consumers. Such words tend to objectify consumers – even the word consumers does this – and creates a sense of "us and them." There seems to be little flavour in the document of consumers having a hand in its construction.
Of course the principles were first accepted in 1985, and were striving to create something that had never existed before and could even be said to have been quite radical for their times. They were a fresh breeze of change in the mental health system. Some key notions were things like the application of a social rather than medical model of psychiatric illness and disability, self determination of individuals according to differential needs, the notion of "de-professionalised" working methods of staff which avoided hiding behind professional barriers are still important principles in the field.
However, much water has flowed under the bridge and there have been many changes in thinking and practices in psychiatric disability support services, many brought about by the powerful emergence of the consumer movement.
It is acknowledged that there have been various adaptions made to the 1985 principles of psychosocial rehabilitation made by VICSERV and by local programs, and that some very good models of practice have emerged. However, I believe that in this new century in a new millenium it is time for a sweeping update of the principles of psychosocial rehabilitation and resulting practices, informed by dialogue between service providers and consumers.
We are living in times when service users and the burgeoning consumer movement in mental health services are demanding a greater say in the planning and development of both clinical and disability support services.
In this talk I am calling for high quality discussion between service providers and consumers about what we do in the sector, why we do it, and areas for positive change and innovation. I hope to tease out just some of the themes that might emerge from increased consumer participation in setting policy in this field.
As a long standing participant of psychosocial rehabilitation services, a consumer consultant and a board member of both the Richmond Fellowship of Victoria and Neami Inc, I want to put forward some possible touchstones for this much needed dialogue.
I will talk about five key headings for further development. These headings, which I will discuss in order are:
Consumer participation.
Consumer participation.
There is a quiet revolution well under way for consumer participation, led by a growing and active consumer movement and the work of consumer consultants in the clinical services all over the state. Really worthwhile initiatives are happening all over the place, such as the Eastern Regions Mental Health Association (ERMHA) highly successful "Bar-B-Ques for Consumer Participation," the building of Victorian Mental Illness Awareness Council consumer networks and quarterly forums, the Boomers consumer-run out of hours programs at the Boomerang club, and a current Richmond Fellowship consumer participation consultation which is asking consumers to identify what forms of consumer participation they want to be built into the whole organisation. The Norwood Association and ERMHA have already employed Consumer Liaison Workers to co-ordinate consumer participation activities and VICSERV is trying to get dedicated funding from the State Government for more such consumer positions. These are certainly exciting times.
In considering ways of enhancing the planning, development and running of PDS services, it seems that all roads lead inexorably back to consumer participation. Whether it be the development of new and innovative service models, training of staff, evaluation of services or ensuring that PDS services can successfully blend with the new Primary Care Partnerships, and to ensure that organisations can retain their credibility with funding bodies– consumer participation is an essential and indispensable element.
There is a need for formal and informal means of consumer participation to be embraced by services, including "participatory democracy" style methods, which should provide for consumers to be adequately supported and resourced. This kind of commitment should lead to more effective services which more fully fit the shape of service users’ wants and needs.
Empowerment of consumers
Empowerment of consumers is an essential concept to be grasped in princples and practice of psychosocial rehabilitation.
Empowerment involves the provision of knowledge, skills and resources to allow people who use PDS services to re-gain control over their lives and destinies. It is rooted in the understanding that the mental health issues of people cannot be understood in isolation from the social environments they experience. Empowering PDS services and staff treat people as whole human beings with "real lives" beyond their involvement in a program, and that support, caring, generating of options and reclaiming hope are all essential elements of psychosocial rehabilitation.
An excellent written resource is "A Working Definition of Empowerment" published on the Internet site of the National Empowerment Centre in America. This would richly inform discussions about updating and "consumerising" the PSR principles, and could almost replace them. The empowerment document is an attempt to give meaning to the word, which had been used in so many different and contradictory ways as to be almost meaningless.
According to the document, empowerment means: having decision making power; having access to information and resources; having a range of options; feeling that the individual can make a difference; learning to think critically and unlearn the conditioning; learning about expressing anger; not feeling alone; understanding that people have rights; effecting change in one’s life and community; learning skills the individual defines as important; being seen as competent; coming out of the closet; and growth and change which is never ending and self initiated.
There is a tendency in PDS services to make claims of being empowering to consumers and that "we’re the good guys" in comparison to clinical services. But anecdotal evidence from many consumers suggests that while there are some excellent services and practitioners in the field, there is still some paternalism, "us and them" mentality and stigma in PDS services, and that consumers often feel under-estimated by staff and thus let down.
There seems to be a real case for many PDS workers to further develop their capacity for self-reflective practices, closely informed by increased consumer participation, more deep dialogue with consumers, and attempting to implement more empowering methods.
Recovery Focus
Recovery from mental illness is a concept which has gained huge momentum from the consumer movement in the past decade, mainly from America in the work of consumer activists such as Patricia Deegan and Cheryl Gagney. Consumers and their supporters are pursuing more holistic and humane alternatives to the medical model of mental illness, which tends to reductionism and self-fulfilling prophecies of "chronic" this "treatment resistant" that. Institutionalisation and over-medication have been implicated for much of the disability seen in people, and as PDS services and other supports come into place, many consumers are doing much better in the community and taking self-initiated steps toward recovery and reclaiming control of their lives and destinies.
A study by Dr Barbara Tooth and some colleagues in Queensland asked consumers who considered themselves to be "in recovery" about factors which had helped and hindered them on their recovery journeys.
Mental health professionals were not rated as particularly helpful, and sometimes absolutely harmful to recovery – except for those who showed extraordinary humanity and caring, and were prepared to "go the extra mile" and show consumers something approaching genuine friendship. The message coming out this important qualitative research funded by a Federal Government grant, was that consumers are vindicated in saying: Just treat us as people, with care and compassion and we will get better."
As one work in progress, Neami Inc has done extensive work on blending the concept of recovery with psychosocial rehabilitation, and has generated a document, with considerable consumer input, which strives to bring the two together.
The working document from March 1999 says in part: "Recovery is a consumer-centred experience based, importantly, on a developed sense of self as the basis of coping and mastery of critical areas of life. It incorporates the realisation of capacity to act in one’s own interests, of goal setting and testing out strengths through personal action."
This would require many changes in service practices and cultures. The document continues: "We should be providing services that build a structure wherein consumers can safely explore options, experiment with choice making and risk taking and develop skills and confidence. We should be building bridges within mainstream community groups, playing an advocacy role, in addressing issues of access and participation."
Peer support and community building
Peer support among consumers is an area of growing interest in PDS services, both in terms of developing a supportive and caring community environment, and informal and formal avenues for peer support. There are some moves towards employment of consumers as peer support workers, as happens overseas, in clinical and PDS services. About half of the students in the Swinburne PDS workers’ course self-identify as having consumer experience.
Consumers have always said that peer support – or the plainer and maybe better word "friendship" – has often been more helpful in coping and learning and ultimately made a greater difference than staff efforts.
The now de-funded Vincent’s program in Albert Park, which provided consumer run peer counselling and innovative training programs for volunteers was a notable example. The Building Blocks program in Caboolture Queensland is also doing some exciting work in peer support, including a resource centre, a telephone "warm line," and groups called "recovery cells."
Community building is vital to PDS services, and the ideas of "therapeutic community" of caring and mutual support which were popular in the ‘60s and ‘70s but are no longer in vogue, do still have a lot to commend them in PDS services today, if they are practiced with genuineness and not artificiality.
There is a need for PDS workers to help foster a culture of peer support in services, encouraging consumers to affirm and value each other’s knowledge, skills and wisdom, and, importantly, help to break down the stigma that can unfortunately emerge even among consumers.
Building bridges into the wider community and advocacy
Many consumer advocates freely admit that the advent of PDS services in Victoria some 25 years ago has probably been the single biggest force for consumer rights and the growth of the consumer movement in Victoria to date.
The more holistic social rather than medical approach has been liberating to many people and PDS services have been a wonderful training ground for many active consumers and advocates.
However, there remains a lot that still needs to be done, in terms of educating the wider community about the facts about mental illness and reducing discrimination and stigma in the community. Sadly, whilst many PDS services acknowledge the need for this sort of awareness-raising community development work, shortage of resources often means this sort of work gets a low priority – "a nice idea, but we can’t afford it at present." It is heartening to see that the National Mental Health Strategy has released a well researched media kit on mental illness and suicide prevention, which seeks to spell out the facts and figures while dispelling the myths about mental illness. The kit is available on the Internet. It would be good to see PDS services following up this kind of effort at the local level.
PDS services can also do a great deal towards building bridges for consumers into the wider community, through advocacy and liaison to provide access and support for consumers to participate in other community services, such as Tafes, pre-vocational agencies, a range of community groups wanting volunteers, employment agencies, recreation and sporting groups, churches and the like.
One important approach that is being done successfully in some PDS services is the "exploring options" approach, where groups are run to provide intensive information to participants about community resources and they can creatively think about many different ways of seeking out new horizons. I think there is a need to take this a step further, to support participants in following through with new plans.
A dream of mine is for day programs to become more like multi-function "resource centres" for people to actively use, rather than perhaps being just a "nicer kind of institution" located in the community only in a minimal sense of the term. I dream of day programs which employ community development approaches, where participants can mutually support each other and share different strategies for coping with day to day issues or compare notes about their recovery journeys.
The PDS sector is just loaded with potential to help people turn around their lives
I have no doubt that the advent of PDS services has been the single greatest countervailing force to the medical model psychiatric stealers of our hopes, annihilators of our dreams, doomsayers of our futures. For that, I say to all PDS service providers, for your efforts, Thank You!
Now I leave you with the challenge for all of us, consumers and service providers to get talking about enhancing both the principles and practices of psychosocial rehabilitation, so we can work together in partnership towards all sorts of exciting positive changes and wonderful innovations for the future.
Thank you for listening, and I hope you enjoy the conference.
Back to Allan Pinches homepage: "Mental Health and Our Community."