Section 2 |
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Citizen Advocacy Programmes build long-lasting, one-to-one relationships between ordinary citizens (citizen advocates), who are unpaid and independent, and people with intellectual disability (proteges). Citizen advocates are asked to make a commitment to represent their protege’s rights and interests as if they were their own; their loyalty is to their protege. A citizen advocate may assume one or more advocacy roles, some of which may last for life.
Having people who know and care about us, and speak out on our behalf when necessary, enhances and provides security to our lives. Citizen Advocacy protects people with disability by connecting them in one-to-one, freely given relationships with competent, concerned citizens.
Although contemporary society continues to look to professionals for answers, Citizen Advocacy asks ordinary citizens to become involved in the lives of people with intellectual disability. Many people possess a variety of talents through their experience in family, work, church and community associations and it is this experience which often makes a real difference in the life of a person with disability.
Citizen Advocacy is not a ‘service’. Rather, it is an invitation to people leading full lives in our communities to get to know people who have intellectual disability who have been or who are at risk of being excluded from their community. Citizen advocates voluntarily enter a relationship which is independent of the Citizen Advocacy office and the human service system.
Since many people with intellectual disability are isolated, alone and hidden, it is important for the Citizen Advocacy Programme to actively seek out these individuals. The Citizen Advocacy staff look for people in need of protection and representation according to guidelines that have been established by the Programme. They meet the person with intellectual disability to discover their needs and interests and then seek out a suitable potential citizen advocate with the necessary skills and interests to meet the needs of the protege. The potential citizen advocate then meets with staff a number of times to understand the Citizen Advocacy principles and concepts and a good understanding of the life experience and advocacy needs of the protege. Only when the potential citizen advocate agrees to take the responsibility of representing the best interests of the protege, is the match made.
The Citizen Advocacy staff then support and offer encouragement to the relationship. Over time a Citizen Advocacy Programme should support a growing number of relationships.
‘A valued citizen who is unpaid and independent of human services, creates a relationship with a person who has intellectual and/or multiple disability, and chooses to understand and to meet some of that person's needs, and to represent that person's interests as if they were the advocate's own. The advocate is recruited, oriented, matched and supported by a Citizen Advocacy office which is independent of service providers’.
Immediately prior to the 20 year celebration and Citizen Advocacy World Congress in Lincoln, Nebraska, in October 1990, a group of world leaders in Citizen Advocacy met to work on a revised definition of Citizen Advocacy. This definition is not one that would ordinarily be used to explain Citizen Advocacy for the first time, but it is a statement that defines the elements of Citizen Advocacy. The definition reached by consensus is as follows:
‘Citizen Advocacy is a means to promote, protect, and defend the welfare and interests of, and justice for, persons who are impaired in competence, or diminished in status, or seriously physically or socially isolated, through one-to-one (or near one-to-one) unpaid voluntary commitments made to them by people of relevant competencies.
Citizen advocates strive to represent the interests of a person as if they were the advocate’s own; therefore, the advocates are supported, and usually recruited, by a Citizen Advocacy office with paid staff that is so funded and governed as to be essentially free from conflicts of interest.
In consultation with this Citizen Advocacy office, advocates choose from among a wide range of functions and roles. Some of these commitments may last for life’.
In a paper called ‘A Brief Reflection on Where We Stand and Where We Are Going in Human Services’ (published ‘Institutions Etc.’ 1983,6(3), 20-23) Dr Wolf Wolfensberger wrote:
‘...Citizen Advocacy is a helping form in which an unpaid, competent volunteer citizen, with the support of an independent Citizen Advocacy office, represents the interests of usually no more than one impaired person as if these interests were his/her own.
A citizen advocate can fill any of several advocacy roles, some of which may last for life. Some examples are: friend, guide, adoptive parent, guardian, trustee, problem-solver.
The Citizen Advocacy office recruits and matches potential advocates with people in need (called proteges), and afterwards provides training, guidance, support and follow-up to the advocates as they pursue their advocacy endeavours.
Citizen Advocacy was developed in recognition of the fact that people with handicaps require protection and advocacy for at least three reasons: (a) many people with handicaps are limited in their ability to deal with the practical affairs of everyday life; (b) anyone who is handicapped in our culture, or who is held in low esteem by society, is very likely to experience devaluing responses from other people; and (c) people with handicaps often need freely given rather than paid personal relationships because of the rejection they have experienced - to the degree that no one may have related to them for years except paid workers.
Citizen Advocacy is one of the most culturally normative service forms there is, in that it strives to embed people into natural relationships....’
We believe that every person’s life has inherent value and worth.
We believe that people with disabilities have been segregated, isolated, and very often, abused, neglected, or at least disadvantaged.
We believe that many people with disabilities are in very difficult, oppressive situations; many are poor, and could be described as ‘living on the edge.’
We believe that all people need friendship, love and compassion.
We believe that all people, especially children, need a home and family.
We believe that all people need something meaningful to do with their lives.
We believe that all people should be treated with dignity and respect.
We believe that all people have something to contribute to humanity in general, and specifically to others.
We believe that a sense of justice and compassion can lead people to stand by, for, and with people who are vulnerable, oppressed, or disadvantaged.
We believe that defence of life should always be the highest priority amongst people who see absolute value in every person.
We believe that competent, resourceful people need to be a voice for and with people who are vulnerable.
We believe that ordinary citizens can and will respond to the needs and interests of their neighbours with disability; people who do respond often get back more than what they give.
We believe that one person can make a difference!
Citizen Advocacy was developed in recognition of the fact that people with disability require protection and advocacy.
Citizen Advocacy Programmes aim to recruit, orient and support citizen advocates to represent the interests of people with disability on a one-to-one basis. While this may appear to be simple it is difficult to do well. Citizen Advocacy is one of the few advocacy forms which has specific guidelines in the ‘Standards of Citizen Advocacy Program Evaluation’ (CAPE). The principles, as listed in CAPE, provide clear boundaries for the practice, but within these boundaries there is much room for immense creativity for the Board and staff. Good practice relies on the understanding of the principles and doing enough of the right things at the right time.
A Citizen Advocacy Programme offers seven potential strengths:
1. Citizen Advocacy is separate from direct services and from a ‘casework’ or ‘paid protective service worker’ approach.2. Citizen Advocacy offers reasonable probabilities for continuity of protection and advocacy, due to back-up of voluntary citizen advocates by paid staff.
3. Built-in conflicts of interest are as low as any organised helping form can make them.
4. There is a highly individualised range of advocacy options to meet both the practical and emotional needs.
5. Most needs can be met through informal relationships. The options exist for citizen advocates to assume formal roles (eg. guardianship) when needed.
6. There is a reasonable chance that necessary long-term relationships can exist either formally or informally.
7. The cost of Citizen Advocacy is low, especially in comparison to other approaches
There are some built-in limitations to Citizen Advocacy that must be kept in mind:
1. Since the time available to recruit citizen advocates is limited, Citizen Advocacy will probably never be able to meet all of the advocacy and protection needs of people with disability.2. Citizen Advocacy office should not control or direct established advocate-protege relationships any more than would be expected in our society for other freely given relationships.
3. Citizen Advocacy cannot replace other forms of advocacy. For example, systems (or class) advocacy is focussed on changing larger system forces which impact on the quality of life for people with disability as a group. Systems advocacy focuses on patterns of problems (eg. exclusion of a class of children with disability from public education), while Citizen Advocacy focuses on individual people’s changing needs over time.
4. It is difficult to get funding that is sufficient, reliable and free from conflict of interest.
5. Sometimes opposition to Citizen Advocacy Programmes increases as advocates become more effective and successful at representing protege’s interests.
6. Experience has shown Boards and staff face many internal and external pressures to move away from the basic values and principles of Citizen Advocacy in favour of other principles and strategies. When followed these lead to short term rewards but result in long term loss of many of the potential strengths of Citizen Advocacy.
People with disability have many unmet needs. Citizen Advocacy is one form of advocacy but cannot respond to all needs of all people. Citizen Advocacy needs to be done well to be effective and the challenge to do it well is to constantly strive to adhere to the fundamental principles of the concept:
1. Each citizen advocate gives their time freely to one person and is not responsible to any agency - even the Citizen Advocacy office. Their loyalty is to their protege.2. The Citizen Advocacy Programme office should operate independently, free from conflict of interest.
3. Advocates and advocate-protege relationships are backed up by a paid staff and by volunteer advocate-associates who should support - not supplant - advocate efforts.
4. A number of advocates are supported and challenged to assume and develop a variety of kinds of relationships suited to a range of individual protege needs.
5. The Citizen Advocacy office should strive to present highly positive images and messages about people with disability to the public and within all the Programme says and does.
6. The Citizen Advocacy office should have available sufficient staff to effectively perform a balance of key activities.
7. The Citizen Advocacy office should have a strong foundation of community level support which guides and takes responsibility for the efforts of the Citizen Advocacy Programme.
Most of the compromises made with the essential principles of Citizen Advocacy result from a failure on the part of Board members and staff to believe that citizens can vigorously advocate for people with disability.
Perhaps one of the greatest challenges facing the implementers of Citizen Advocacy is to keep faith with the principles that many competent citizens in the community will voluntarily and freely choose to accept the personal involvement and sacrifice involved in advocacy.
There are many single, or multiple roles, a person may assume as a citizen advocate, such as adviser, protector, ally, and:
• Spokesperson - willing to vigorously represent the protege’s interests in situations where his/her rights are at risk of being compromised.
• Guide - assist with practical problem-solving such as transport, child care, laundry, shopping, budgeting, housing etc.
• Nominee - to be registered at Centrelink in order to make inquires about pension payments to the protege.
• Guardian - assumes the Guardianship Tribunal-appointed responsibility of making decisions for the protege in one or all life situations.
• Adoptive parent - assumes the legal parental responsibility for a child with disability.
• Companion - willing to ‘be with’ a protege who gives little positive feedback or seems to have little awareness. Spends time regularly with the person and is a concerned presence.
• Friend - genuinely cares for and has affection for a protege and shares of himself/herself in a mutual relationship.
• Co-advocate - shares the advocacy with another citizen advocate, usually in different roles.
• Mentor - assumes a role of a trusted teacher who takes a personal interest in advancing the social status and role of a protege.
• Crisis advocate - assisting, on a time-limited basis, with a specific problem or crisis as it arises in an emergency and/or critical situation.
• Monitor - an advocate reviews services being provided to the protege and holds the service provider accountable for the quality and availability of the needed services.
• Financial sponsor - willing to provide funds to assist a protege in financial crisis or to go guarantor for a specific need.
• Short-term advocate - willing to address issues on a time and/or task- limited basis eg. speaking up on behalf of a protege at a time of need.
Definition of Social Advocacy
Acting with minimised conflict of interest on behalf of the sincerely perceived interests of a person or group in order to enhance and defend the roles of ‘human being, growing and developing person, and citizen’, in a fashion which strives to be emphatic and vigorous and/or which is actually, or very likely to be, ‘costly’ to the advocate, for example in terms of: time and other resources, stress, bodily demands, social rejection and ridicule, self-esteem, socio-economic security, livelihood, physical safety or life.
Social advocacy defines the essential elements of all advocacy. There are many forms of advocacy, Citizen Advocacy being one, which draw their foundation from the elements of social advocacy.
Essential Elements of any Advocacy Form
1. Advocacy is on the side of disadvantaged/weak party, and mindful of parties that are even more disadvantaged.2. Advocacy is concerned with the genuine, major needs and welfare of the party at stake.
3. Advocacy is motivated primarily by a desire to do what needs to be done for the party at stake.
4. Advocacy engages in the vigorous defence and promotion of the welfare and interests of the party at stake.
5. Advocacy strives for the minimum possible conflict of interest.
6. Advocacy is likely to be costly to advocates, especially in terms of:
- emotional stress- bodily demands
- social rejection, ridicule
- self-esteem, self-certainty
- socio economic security, livelihood
- physical safety, and even life.
7. Advocacy has fidelity or ‘stick-to-it-ive-ness’, especially over the long run.
• Rosie is now twelve and has lived in a local institution since she was 18 months old. Rosie has not had the protection of her family for a number of years and was made a State Ward; her health was so poor she was likely to die; she weighed 4.9 kgs. Few people saw a future for her or really believed she needed one.
Fatima, a recently married university graduate, was asked to be Rosie’s citizen advocate to protect and improve her life. Fatima could not take Rosie home herself, but she set about finding someone who could. Fatima found Rosie a foster family and several months later, she moved out of the institution.
Now, after 2 months living with her foster family, Rosie has gained 2.5 kgs; she has her own room; her own clothes; her own possessions; her own home - and Fatima will continue to be her citizen advocate.
• The citizen advocate of a 12 year old boy is supporting his parents to make decisions and choices about his future education and employment needs. The advocate attends meetings at the education department and helps his parents to clarify and understand what is being suggested. The advocate also asks the questions that the parents are reluctant to address.
• When his mother passed away a 26 year old man had no one and no where to live. His citizen advocate found him a place to live and located his father who was thrilled to be a part of his life again. When we see this man now (he is about to turn 30) he tells us with pride that he has 18 people in his family.
• Red tape and a series of unfortunate circumstances landed Tom in a locked, psychiatric unit. Although the professionals agreed that it was an inappropriate place for this gentle young man to live, he remained there for three months. He had nowhere else to go.
Tom needed someone on his side immediately so Peter was asked to be his crisis advocate. Through Peter’s vigorous advocacy and representation, using the media and the Anti-Discrimination Board, Tom was released and now lives in his own unit, with support provided. The Programme is now seeking a citizen advocate to watch out for Tom’s long-term, stable future. In the meantime, Peter will continue to protect Tom.
• When her grandmother, the only family she had, passed away, this thirty-five year old woman, like so many others, was alone. She now has a citizen advocate who has come to care very much for her and will take her home to live when her own family members move out.
• Labelled as having a dual disability the future for a young woman was very grim. No place to call home except the psychiatric ward of the local hospital; her so called ‘friends’ would take her in, take her money and flush her medication down the toilet. This cycle continued until a citizen advocate stepped in and said ‘NO MORE’. It has been over two years now since this same woman (who had been abandoned by services) has had to spend time in the hospital and last month she fulfilled a long-time dream and was married.
• Institutionalised for most of her life a thirty year old woman moved into the community and was living alone in a unit, totally isolated and vulnerable, as she was unable to walk following a motor vehicle accident in which both her legs were broken. She was tormented, teased and the target of thieves which made her fearful for her life. When her citizen advocate met her he likened her deprivation to that of a prisoner of war. With his support she has moved to safe housing and her stolen possessions have been replaced. The citizen advocate is now challenging the Motor Accident Insurance Board for compensation and is committed to ensuring that she will never be victimised again.
• Ella monitored decisions made by others for Nadine, about events which would change the course of Nadine’s life forever. Ella ensured Nadine’s needs and best interests would be met during this time of change and disruption to her lifestyle. She also met Nadine’s solicitor and attended court with Nadine. Nadine now has a safer environment and is learning many new skills.
• Everyone in Allan’s life settled for far less than best for him. As well as having an intellectual and physical disability he is blind. The only people around were staff who struggled with life ever looking different for Allan. No one expected anything of him and his life was spent sitting ... and waiting. Peter has become involved in Allan’s life and is providing many and varied experiences for him. They share time together and Peter is assisting Allan to build and fulfil dreams. He is getting to know Allan as a man with potential and hope for the future.
"I guess everyone could do with an advocate! As I said, I am very lucky to have supportive family and friends. But there are people out there who are alone in the world and are very vulnerable. For people with an intellectual disability, having an advocate means independence, protection, advice, respect, love and friendship." - Linda Palmer, Protege
"Through my increasing involvement with Citizen Advocacy I have seen instances where people have done some extraordinary things, including saving people’s lives, rescuing them from abusive institutions, and just simply standing alongside and sharing the pain of a person for whom nothing seems as if it would work out in their life. I continue to stand in awe of the willingness of ordinary people to do extraordinary things and, what is more, to make very light of what they have done." - Peter Millier, Board member
"I was speaking to a new advocate recently whose protege has experienced a great deal of rejection and who is often neglected. He said that his protege asked him 'Why you ring me?' The advocate replied 'Because I like you'. The protege then asked 'But why?' It is obvious the protege has never had people around him before who like or love him. Now he does though....he has Bruno." - Julie Clarke, Coordinator
"Citizen Advocacy is an example of how ordinary people are asked to respond to people with a disability who are at risk of social isolation, and who need to have their interests represented. Citizen Advocacy is a community effort by a group of local citizens who are committed to the idea of acceptance and justice for people with a disability. They are people who believe that ordinary citizens can and will when they are asked to do so, respond to the needs of vulnerable people with a disability in their community." - Bob Lee, Coordinator
"The heart of Citizen Advocacy lies in its commitment to establishing and supporting personal one-to-one-relationships between a valued and unpaid citizen and a citizen who has an intellectual disability." - Sonia Bernardi, Former State Coordinator
"A Citizen Advocacy Office can assume that there will be an number of ordinary citizens, who will be motivated to act for a variety of reasons." - John O’Brien, Georgia Advocacy Office