By Allan Pinches,
Consumer Consultant for Mental Health
(Extended version of an article which first appeared in the March 2004 issue
of New Paradigm, the journal published by Psychiatric Disability Services of Victoria (Vicserv) Inc.
As a Consumer Consultant who has been around PDRS and clinical services for a long time, and from my participation in many strategic and developmental planning processes, I want to share some suggested consumer-based considerations for employment related programs and services for people with psychiatric disabilities.
These suggested consumer-considerations seek to build upon the important place given to employment, prevocational and educational needs of consumers within the worldwide Principles of Psychosocial Rehabilitation. The suggestions would have applications for PDRS services or specialist agencies running employment related programs, or for employment related aspects of Key Support work.
These suggested consumer-considerations also seek to condition the responses of PDRS and other agencies to growing demand from consumers for improved access to employment, and other pathways toward fuller social and economic participation. There is also an attempt here to promote more positive outcomes for consumers within a changing social and political environment. I also set out number of reflections based on my own personal experiences, and link these with a wider context as I see it this stage.
Based on my research, developmental involvements and conceptual work in the mental health field, some suggested key consumer-considerations would be:
• The development of a co-ordinated consumer advocacy voice for employment development.
• Inclusion of a range of value-added elements for people with psychiatric disability in employment related programs, aimed at providing “real” work experience and “real” accredited education and training, aimed at increasing consumers’ chances of a “real” working future (to the extent that is possible for each person.)
• Providing a wider range of employment types and skill bases in projects, to help advance the employment and prevocational programs in PDRS settings. Many consumers have expressed disappointment that all too many local “work projects” seem stuck in “stock standard” default models such as certain types of "gardening/ mowing crew" or “cleaning service” projects. Many consumers have substantial work and educational backgrounds, and many have skills and talents, and often express the need for a broader range of employment access supports and pathways.
• Adaptability of the employment program or service to consumer participants’ varying and individualised needs, abilities, interests and aspirations, is an important element to be considered.
• Employment related services and programs would need to be designed and targeted in ways that take into account distinctly different configurations of needs of various groupings of mental health consumers, such as: young people’s needs compared to the needs of more long-term consumers who carry the burdens from formerly more “institutionalised” services; or particular needs of consumers from Aboriginal and Torres Strait Islander communities; or the many particular issues faced by consumers from Culturally and Linguistically Diverse (CALD) backgrounds.
• Understanding and responding to the lived experiences of consumers in the program design and implementation, can add some positive dynamics for effective programs.
• Personal development, psychosocial rehabilitation and key support work remain an integral requirement in the makeup of any employment or prevocational program for people with psychiatric disabilities. This has implications for service design, resourcing, and staffing profiles and levels.
• Encourage confidence building through “doing” and also by assisting the participants to develop strategies for negotiating through many of the barriers within job search, work, education and training processes.
• Program settings which assist consumers toward meaningful re-connection and re-claiming of roles within the wider community are important.
• Opportunities for peer support, social events and recreation are important, and help make employment related programs more personally achievable, empowering, and sustainable for individuals.
• Practical focus is essential -- but equally important are more subtle and personalised elements of fostering hope, giving encouragement, helping people “discover” their hidden strengths and start re-visioning their futures.
• Consumer participation in ongoing management, planning, administration and
developmental work towards the project for interested consumers -- both because of the intrinsic and well documented benefits of consumer participation, and also to provide opportunities for consumers to gain valuable experience in “entrepreneurial” development.
• Community linkages of various types for the project and its participants -- including councils, TAFE colleges and universities, community groups, local businesses/ employers, Commonwealth Rehabilitation Service, vocational guidance, specialist placement services, etc, -- providing employment, education and training opportunities and social connections for consumer participants.
• Vocational counselling and support in creative exploration of employment, training and education options, including assistance with job search activities and matching of skills and experience to work options.
• Possibility of developing Prevocational, Employment, Education and Community Linkage units within local PDRS service systems, providing a range of options, including dedicated programs and improved methods of and linkages and access to a range of employment and related options for consumers.
• Flexible modes for supporting consumers in mainstream workplaces or education facilities, including ways of respecting participants’ choices around issues of disclosure and privacy. Negotiation and discussion of such issues would be an important stage of the setup process.
• Defined pathways are needed for participants to “graduate” from all types of employment and prevocational programs and “move on” to further options.
• An “Exploring Options” approach, structured into these types of programs can develop in participants a long-lasting life development skill base, a forward looking approach to life, and ready method to pursue self-determined progress.
“Making It Real” – How These Approaches Can Promote Positive Consumer Experience and Outcomes:
From my personal experience as a consumer who was involved with Edith Pardy House's lawn mowing community voluntary work group and the Home Maintenance group, which were among some of the Richmond Fellowship of Victoria's early work projects for residential rehabilitation clients in the 1980s, I am well aware of many benefits that can flow to consumers from being involved with work related programs and activities.
There are many clear benefits, ranging from the positive health and wellbeing effects of physical activity; the rehabilitation value of maintaining work routines, purposeful activity, motivation, achievement, and learning; the self-esteem and optimism that can arise from doing something positive for oneself and others; and the enjoyment and challenges of working along side others; and the empowering and encouraging experience of re-connection and re-claiming a place within the wider community.
My involvements with these quite basic work tasks often did help to relieve the depression and boredom, or even sense of futility that can often be part of the experience of psychiatric disability.
It was a major plus factor that this work, which was mostly without any pay, was carried out for elderly or disabled people in the local Emerald Hill-Sandridge community who could not do these things for themselves, so there was a sense of making a valued contribution to the wider community.
This was usually very helpful to my self esteem as a consumer participant, and the connection with those people in the surrounding community was welcome but not always easy thing to do. The RFV had a number of fairly innovative work training and employment projects, by the standards of the time, in the 80s, which made quite a difference to a number of consumers before the funding for work projects stopped.
Other PDRS services over the past two decades have developed a range of employment related programs, some of them working to very sophisticated and diversified models, occupying varying degrees of priority within a service mix. Some services make employment a key focus, while others give it a much lower priority -- partly depending on factors like variations in local issues, areas of need, existing social infrastructure, available resources or organisational philosophies. A number of specialist community-based agencies to facilitate employment access for people with psychiatric disabilities and other disadvantaged and disabled groups were developed over the same period, and more recently the Job Network’s many community providers have been contracted to take over the role of the old CES.
Among my friends and fellow consumer activists I know quite a few people who have found work programs, in many forms, incredibly helpful and meaningful in their lives.
I know quite a number of people who are working part time in community sector/ disability caring jobs, as well as consumer consultancy. I know consumers who say they have benefited from Bromham Place Clubhouse and the Transitional Employment Program (TEP) of the Mental Illness Fellowship and had many new doors opened. I know people who have been able to successfully re-enter part or full time employment after undertaking the training programs offered by Work Link or Job Futures, to name just two prominent programs. I know people who have found their way back into employment through Work Supply Company and other similar supported employment programs. Some friends have mixed accounts of their experience Sheltered Workshop type employment facilities, notorious for their sub-minimum rates of pay, but some of these programs with added social and recreational elements were more positively, even warmly remembered.
I also know a few people living isolated lives “in the community” who say they miss the friends and social life they had in the old days of outpatient Industrial Therapy at Larundel Psychiatric Hospital.
I have certainly known quite a number of consumers whose lives were made richer and more interesting by being introduced to gardening and horticulture in various ways, and the “gardening gangs” were a source of personal pride and a small but appreciated bit of pocket money for some people. The new RFV “Sprouts” horticulture project for youth residential rehabilitation clients in the Northern area, has some of the strengths and value added elements I have featured in this article, and some of this material was originally developed by me as a Consumer Consultant, in response to and an extension of early versions of the project proposal.
I would like to add the observation that from my own experience and research, the relationship of consumer participants in some “work projects” to the daily realities of the work -- and probably like many employment and education options -- can be full of complexities and contradictions.
For a participant on a day by day basis, it is very easy for work projects to become a matter of sterile routine and repetition. It can take on a sense of not leading anywhere definite. A person can become disillusioned with low monetary rewards for quite hard and often dirty work. For a participant, especially when depressed, it is possible to fall into patterns that seem like soullessly “going through the motions.”
However, it is also paradoxically true, that these same daily rhythms and the slow circularity of the routines may actually be salutary in some ways, and can help some of us at times to postpone lingering suicidal thoughts, for just another day, with the idea of “we’ll see how things go in the next few days” and perhaps over time allowing some more hopeful cycles to set in, and maybe inching forward, painfully slowly, along the path of recovery. As I said, these are complex matters, and progress takes time.
I think this is why all of the value-added factors providing life-enhancement as well as employment and training structural elements that I have highlighted are so important, to help unlock many of the benefits consumer can get from a program. It takes time, patience, understanding and caring from service providers and friends of the consumer, to support them in this often difficult journey, with its slow progress, occasional reversals, fluctuating confidence and hopes, wonderful breakthroughs and new achievements, and satisfaction of successes when they occur, magnified in many ways by the sheer difficulty of their achievement.
In my own life, I had worked as a metropolitan newspaper journalist for six years up to the age of 23, when I had a serious breakdown which resulted in a several years “in the wilderness” of unemployment, loss and grief over the loss of a much- loved career and an overwhelming depression. Eventually I did find pathways to recovery, in many ways, with help from friends and caring workers, and my vocational efforts have taken me to some interesting places.
I have worked in a the Employ-Working Effectively Co-Operative’s community publishing group which was part of a unique hub of employment activism and community development in the 1980s, which included occasional paid assignments but was consistently rich in experience, mentorship and training.
At another time, I worked for a period as a Disability Awareness Worker for RESPOND – North West Region Council on Disability, in Broadmeadows, through the Community Employment Program (CEP).
I also took part in the Work and Education Program at Northern Metropolitan TAFE, Collingwood Campus, and discovered the untold potential benefits that can flow from even “basic introductory” courses in computers or office skills. The WEP included somewhat radical and empowering elements like community radio, video making, desktop publishing, B & W photography, and advanced “cold canvassing” job search techniques. Many of the participants were social activists, just as marginalised by their brilliant non-conformism as anything to do with long-term unemployment. Sadly, all of three of these programs are now defunct due to funding cuts.
I have been working a number of years part time as the Consumer Consultant for Northern Area Mental Health Service and do a lot of other semi-voluntary consumer advocacy in the mental health field. I have recently completed my Bachelor of Arts (Community Development) at Victoria University of Technology after nearly a decade of a patchwork-quilt pieces of study, very part time and with some long breaks, and thankfully always being welcomed back.
I can personally attest that graduated goal setting, with a progression of goals being pursued over time, of increasing levels of challenge, is a very good method for the more formal aspects of an employment or prevocational program -- but the non linear aspects of rehabilitation and recovery, well documented in the literature, and the aspects of programs aimed at assisting people in the realisation of their human potential, and assisting them to gain greater control over their lives and destinies, are also vital elements for employment related programs.
It is very important, in my view, for any work with individuals to resonate with their own personalised systems of meaning and purpose, and to assist them to make the link between the activities day by day and steady progress toward achieving their goals.
But not just goals-- also their hopes and dreams. Because in reality, without these seeming “wispy intangibles” drawing us forward, no-one would get very far in life’s endeavours.
To give a personal example, I think a large proportion of my progress towards work and study came from things I told my mother I was “going to” do, hoping to please her or at least not disappoint her too much. I think most other consumers would have similar reflections, and as often as not it might be about encouragement or a fresh approach to some issue from a caring support worker. This infers a “shared journey” of the consumer participant and worker, characterised by trust, respect of persons, honest communication, shared learning, constant exploration of potentials in every person and willingness to constructively seek to overcome difficulties.
“Wasn’t reform supposed to mean doing something good?” -- Consumers are among advocates for more people-focused responses to social needs:
I want to firmly state my belief that it is a far from safe assumption that net benefits would automatically flow to consumers from doing just any form of work, in and of itself.
The so-called work ethic can be oppressive and work can be alienating just as easily as it can be enabling and fulfilling – with much depending on the design and context of the work, the likely benefits, the degree of control people have over their lives and destinies, how the project might improve people's quality of life and future prospects. Matters of social context, the scope for personal autonomy, values and beliefs of choice, and questions of meaning and purpose are of great importance too, and to overlook these factors can be very damaging to people.
It is important to understand how consumers in many settings often speak about how the experience of mental illness has led them to embrace other, alternative systems of personal meaning -- often based on ideas of friendship, community, spiritual expression, creativity and other less materialistic values -- and assert that consumers already DO contribute to the community in a myriad of ways, not the least of which is in supporting fellow consumers.
Work projects which do not sufficiently recognise these systems of alternative meaning – some would say enhanced meaning -- and make claims too much along the lines that “work will set you free” could be somewhat alienating to some consumers and limit the readiness of engagement and potential benefits of projects. Such factors related to an individual’s values and approaches to life, far from being abstractions they may first appear, are often fundamentally and centrally linked with the person’s experience of diagnosed mental illness, and related matters of psychiatric disabilities and social marginalisation.
Mental health consumers are often offended by the notion of "mutual obligation" as espoused by the Federal Government in debates around welfare changes. Consumer advocates often argue that the policy, as implemented, is another example of how a society governed according to economic rationalist policies tends to “devalue” people who are limited in their capacity to undertake paid employment, consume goods and services and pay taxes.
Many community activists and other critics of the Federal Government’s implementation the welfare changes have argued that ‘mutual obligation” policies are “one sided” and place demands and coercive sanctions on welfare recipients and provide little genuine help for people with disabilities to access employment and training, or provide any meaningful initiatives towards breaking down related social and economic barriers.
The McClure report is probably correct, up to a point, in arguing that increased access to paid employment would offer the best chances for mental health consumers to secure an economic future for themselves, (to the extent people can manage), and to avoid poverty and other social difficulties.
The central idea of the McClure Report of a more “active” welfare system, geared up to promote access to employment, education and training and to provide more opportunities for people with disabilities and people experiencing social disadvantages seem acceptable and constructive enough in principle -- with the proviso that if we are to have “mutual obligation” policies they should be implemented in positive, supportive and compassionate ways -- rather than in ways experienced as “blaming the victims” in society, leaving poverty and inequality largely unrestrained, and making the lives of already disadvantaged people even harder.
It would probably be a good strategy for community action coalitions to be formed, in regions and states, to make representations to policy makers and governments to advocate for employment services and a welfare system characterised by principles of social justice, equal opportunity and fairer distribution of social resources -- including provision of adequate levels of income support, equity, fair access to welfare, removal of punitive breaching regimes and “poverty traps,” and recognition the diverse range of people’s needs and social contribution.
Of course it would also be very desirable for community level research and development projects to happen, involving a wide range of stakeholders, and plans made and funding applied for or raised for developing new and localised responses to employment and prevocational needs for people with psychiatric disabilities.
In recognition of the fact that the needs of consumers are complex and multi faceted, and community problems virtually never reducible to simple “blanket” solutions, there could be a whole series of interlinked community development based awareness raising and advocacy campaigns on many urgent issues running parallel to consumer employment needs in the mental health field, such as:
• Proper funding for PDRS, employment programs and other community services to better reflect community needs, and allow further developments.
• Improvements to the service system are needed, with greater integration of services, to make mental health clinical “treatment in the community” more of an actuality.
• Long term strategies including urgent provision of increased numbers of acute care psychiatric inpatient unit beds.
• Action to end the shortage of housing and support places and urgent need to tackle homelessness problems;
• Increased resources for consumer participation in the running of PDRS and clinical services.
• Burgeoning needs for more and improved carer and consumer respite care;
• More information, education and participation for carers, across all mental health services.
• Need to foster development of consumer based peer support options.
• Improved access to general health services, GPs, and health education programs, to counteract “disastrous” burden of disease levels in the mental health consumer population.
• Free access for mental health consumers to proper dental services is needed.
• Smoking cessation programs, based on an understanding of the lived experiences of consumers, could seriously tackle tobacco related poverty and the under-addressed general health crisis among people with mental illness.
• Supportive assistance to parents with mental illness and their children.
• New and innovative programs to for young adults with mental health issues.
• Helping agencies develop more supportive approaches on drug and alcohol problems experienced by consumers.
• Continuing education of the community and media about mental health issues and attempting to reduce “stigma.”
• And many other important issues about community “entitlements.”
Psychiatric Disability Rehabilitation and Support services, in collaboration with Vicserv, consumers, and a range of community stakeholders could make a determined and increased contribution to such efforts, which would greatly benefit consumers and the wider community.
An afterword for service development:
Some consumer-based programmatic considerations on employment related programs, expressed in the mode of strategic questions:
• Could qualitative research be carried out of PDRS service consumers’ needs and
aspirations regarding employment -- not just for work or earnings in the short term, but for a working life path and opportunities for training, education and employment? Could this be a job that Consumer Consultants could be employed to do? Or an outside consultancy?
• What steps could be taken to assist participants in preparing for a real working future for participants? What support and assistance would participants get for widely exploring their future options? How exhaustive would these methods for locating opportunities for participants be, and how long lasting and far reaching would the follow up be?
• What specific methods and processes would be used to assist participants to branch out/ move on from any given project? How would this be resourced? How would networking and community development type work feed into the day to day work of the project?
• Would there be adequate scope within any given project for vocational counselling, skill identification and assessment of transferability of skills, and development of personal learning and achievement plans?
• Are staffing levels for programs or projects adequate for the range of roles responsibilities that would be required to also target the broader psychosocial rehabilitation and support needs of consumer participants? This would be important, in the face of external relationships, reporting, accountability, and monitoring requirements for funding bodies, promotion, community development and education and the wide range of skill bases required are considered?
• Would the learning component, in the specific employment types be strongly enough emphasised? Would there be a range of value-adding program elements for consumer participants? Would participants be able to gain recognised qualifications by formal study and traineeships? How readily could they make the transition to other work and study types without losing adequate levels of support?
• How will the agency manage external community linkages, for example with colleges of TAFE or specialist agencies? How will services deal with the likelihood that at least some of these agency relationships may be more "high maintenance" than anticipated.? Would this affect staffing levels and profiles?
• Through what specific structures and methods would consumers be able to receive effective, tailored, and flexible support in various education facilities and workplaces they may progress into from a program? How could this be delivered in a way that consumers wouldn’t raise complications about “disclosure” issues or worries about possible stigma?
• What would a dedicated program of education participation support for people with mental health issues look like? How could this be developed? What would it take to mobilise the political/ bureaucratic/ community agency/ education provider support to make this possible? What actions and resources would need to be mobilised?
• What are the positive and negative implications re Centrelink (ie, Social Security) benefits of clients who take on work options and how accessible and able to be maintained are such supplements as Pensioner Education Supplement and Training Allowance? What are the implications of “poverty traps” caused by pension deductions due to earnings? How can these be alleviated?
• What elements of consumer participation in project management and control could be built in? Could any given project be developed along the lines of community entrepreneurialism? Would it be possible for participants to take part in formal small business courses? Could employment programs include a progression for participants to go on to create and run their own businesses, individually or in small groups? What practical steps would be needed? What capital, information and mentorship resources would be needed for such ventures to succeed?
• How would the psychosocial support and developmental needs of participants be met? Discussion topic: The personal employment barriers (as distinct from external structural/ societal ones) experienced by many consumers can be very complex and go beyond whether a person has "work skills." In what ways? Discussion topic: Qualitative life experiences are important, and many solutions/ possibilities for future action can emerge from within the participant's own inner resources, if properly nurtured. How can such an idea be translated into a lived reality?
• Would the project include a number of options providing flexibility over the type and level of engagement with the program? What would be the methods and criteria of selection? How would services handle issues of participants’ ongoing job performance?
• What would be the opportunities for participants to have social outings, organised sport or recreation and some fun? How could participants and staff to celebrate together their progress and achievements?
• Would consumer employees receive a fair and equitable wage, comparable (when adjusted with Centrelink pensions etc) to Award rates?
There are quite a number of programs which have built in at least some of the consumer considerations and value-added features I have outlined in this article, and no doubt many wonderful and innovative features I may not have included here. There would also be many services earnestly working on programmatic issues in similar terms to those I have expressed here, and many interesting and worthwhile developments -- hopefully in good and committed partnerships with consumers and with strong understanding of the lived experiences and needs of consumers. I hope that my article will help stimulate and inform further constructive discussion about these important issues.
© Allan Pinches 2004.
