Illawarra Citizen Advocacy was a world leader in recruiting and supporting citizens to advocate on behalf of people with intellectual disabilities. The decline of the programme provides some cautionary lessons.
Ken and Joanne, Illawarra Citizen Advocacy
Imagine someone arranges a meeting with you and says, “There’s a young man named Fred who lives in your neighbourhood. He has a serious intellectual disability and he is vulnerable to abuse. He needs someone who will ensure that he is safe — someone who will protect him as much as a relative or close friend. And he needs this person to stand by him for the indefinite future, maybe the rest of his life. I think you’re ideal to fill this role. Would you agree to be this person — to be Fred’s advocate?”
This is a very big request. It’s a huge request. Who would possibly agree?
I learned the answer to this question in 1996. The coordinators of Illawarra Citizen Advocacy, Julie Clarke and Joanne North, talked to me about their work and then asked whether I would be an advocate. For my own reasons, I declined. But I did agree to join the board of the programme, and then a year later became chair of the board for the next decade.
In the 1980s, in the Illawarra — the region including the city of Wollongong — a number of parents and others supporting people with intellectual disabilities had a dream. They shared stories, held meetings and lobbied to obtain funding for a programme practising citizen advocacy.
Jo and Kirsten, Illawarra Citizen Advocacy
To understand citizen advocacy, it’s first useful to describe advocacy, which can come in various types. A lawyer is an advocate for clients and environmentalists are advocates for nature. People with skills and connections can advocate on their own behalf, called self-advocacy. For example, people who cannot see can speak, write and campaign for better services and facilities to cater for the sight-impaired.
However, some people have little or no capacity to advocate, and this includes many with intellectual disabilities, sometimes combined with physical, mental health or other disabilities. The advocacy of concern here is on behalf of people with disabilities who have significant unmet needs. They might be neglected, at risk of abuse, friendless, homeless or not being given opportunities.
Several of the Illawarra residents who met in the 1980s were parents of children with intellectual disabilities. These parents were worried what would happen to their children after they, the parents, died or became incapacitated. Other parents needed help to be able to cope with the needs of their children.
One type of advocacy is called systems advocacy. This involves paid advocates — who might better be called organisers — helping to change systems that prevent full development. Education systems or transport systems may need different policies or technologies or understandings so they can cater for people with disabilities. Systems advocates often work with others to foster change, for example working with parents to open up education systems to serve their children. Systems advocacy has a multiplier effect, because a change in a system today benefits some individuals immediately and many more later on.
Another type of advocacy is called individual advocacy. A paid staff member advocates on behalf of various individuals, taking on clients one after the other, sometimes just for a single item of need, sometimes for repeated expression of voice for the same person.
Then there is citizen advocacy. The paid staff members, called coordinators, do not do advocacy themselves. Instead, they search for people with disabilities with significant unmet needs who might benefit from advocacy. When someone suitable is found, this person is recruited into the programme and called a protégé. Then the coordinator searches for a member of the community — an ordinary citizen like you or me — who would be willing to be an advocate for this protégé, usually for the indefinite future. It is an extraordinary thing to ask. I said no myself, but as a member of the board of Illawarra Citizen Advocacy, I discovered there are many who say yes.
Citizen advocacy relies on people — the advocates — who have no special training. The advocates can obtain advice and encouragement from the coordinator, but need to do the advocacy themselves. What they lack in training they make up for in learning about their protégé. Over the course of weeks and months, the advocate learns about the protégé’s life and needs and discovers what can be done to protect and enhance the protégé. In a sense, a citizen advocate is like a family member, developing the same sorts of insight and commitment that parents, siblings or children can develop about others in their families.
Sometimes the most important contribution of a citizen advocate is simply to be there. Some protégés are so isolated that there is no single person who stays in their life. Various service workers — some of them highly caring and skilled — may help the protégé, but often the workers come and go, not maintaining an ongoing relationship. The advocate comes into the protégé’s life and is there because they want to be there, not because of being paid to be there.
Peter and Rae, Citizen Advocacy South Australia, http://www.citizenadvocacysa.com.au/success_stories/peter-and-rae
Activities in Illawarra Citizen Advocacy
I attended monthly board meetings of Illawarra Citizen Advocacy. At each meeting Julie, the coordinator, told about what she and Joanne had been doing.
One key activity was recruiting protégés according to an agreed recruitment plan for the year. Julie and Joanne searched for people with intellectual disabilities, visiting schools, homeless shelters, homes for the aged and a range of other places and networks, looking especially for people in need who might not be known to or well served by welfare or other agencies. The stories of their searches, and of the individuals they recruited, showed the importance to seeking to find those who are most disadvantaged and in need of advocacy.
Another key activity was recruiting advocates. After a protégé had been recruited into the programme, Julie and Joanne assessed the protégé’s needs and built up a profile of the sort of person who would be most suited to be an advocate for this particular protégé. Then they started asking, via their networks and through cold calling. They took into account age, sex, location of residence and especially the sort of advocacy needed. Some protégés needed, most of all, a friend. Others needed a door-opener, who would expose them to new experiences. Others needed a protector, against abuse or destitution. Julie and Joanne were matchmakers, putting together two people who would be suited for each other.
Recruiting advocates was often very difficult. After all, not that many people are willing to make a strong commitment to protect and defend someone they have not even met. Julie would sometimes find an advocate on her first try, but more commonly she talked to a dozen people, or even several dozen, before finding the right person who was willing to be an advocate.
Next, the protégé and advocate were each prepared for their roles, and then the first meeting was arranged. A match was made. Every new match was a cause for celebration. On the board, we were buoyed by these heart-warming stories.
At the board meetings, Julie told about recruiting protégés and advocates and about making matches. She also told about ongoing relationships between protégés and advocates. Each month she or Joanne tried to contact each advocate, a process called follow-along, to see how the relationship was going, sometimes giving advice concerning challenges and sometimes encouraging advocates to be more vigorous in their efforts. The stories Julie told were both tragic and inspiring. They were tragic in revealing the despair and difficulties in the lives of many protégés and inspiring in telling of the efforts of the advocates. Sometimes advocates made a tremendous difference.
As I spent more time on the board, and took on some new roles, I learned more about citizen advocacy in Australia and elsewhere. There were perhaps a dozen active citizen advocacy programmes in Australia, most of them funded by the federal government via the Department of Family and Community Services (now the Department of Social Services). The programmes supported each other in various ways, and banded together in an association. I became the Illawarra programme’s representative on the Citizen Advocacy Association.
Michelle and Winnie, Citizen Advocacy Perth West, http://www.capw.org.au/stories/michelle-winnie/
Achievements of the programme
Gradually I came to realise that Illawarra Citizen Advocacy (ICA) was an outstanding programme. Julie and Joanne’s passion for helping those in need, and their description of how the programme operated, had been enough to get me to join the board. I soon discovered that their passion and commitment were having impressive results. ICA was creating matches at an impressive rate, more than a dozen each year. Some relationships didn’t last all that long, but others continued for years or even decades. Julie and Joanne were supporting more than 70 relationships, requiring a huge amount of follow-along and support in addition to their challenges in finding new protégés and advocates.
Not only did ICA support a large number of relationships, but many of these were ones that involved vigorous advocacy, in which advocates had to challenge services to act. Before I joined the board, three advocates, whose protégés resided in Cram House, a facility for severely disabled children, made a complaint to the relevant government department, leading to a major investigation that led to Cram House being closed down. Vigorous advocacy can be needed when problems are serious, and citizen advocates are well placed to undertake it, because they are independent citizens who are not paid or receiving benefits from their roles as advocates. Paid advocates, on the other hand, have to be careful because their jobs might be in jeopardy if they offend powerful service providers.
Every year, the ICA coordinators would plan their activities for the year. I joined some of these all-day meetings, which were carried out following a careful protocol. One of the priorities was seeking protégés who were either quite young or quite old. These age groups are often overlooked because the individuals lack the capacity to seek assistance themselves and they are less likely to be seen as an advocate’s friend. It is a useful reminder that the roles advocates are supposed to play depend on the needs of the protégé, not the expectations of the advocates.
A certain proportion of protégés were sought who were unable to communicate. Such individuals are often highly vulnerable because they cannot tell anyone about their needs. When communication is difficult or impossible, the relationship is even less likely to be one of friendship, which normally involves mutual interaction.
This brings up another distinction, between expressive and instrumental relationships. Expressive relationships involve emotional needs of the protégé, for example for companionship, advice and role modelling. Instrumental relationships, on the other hand, involve ensuring things are done for protégés, such as finding a suitable home, avoiding prison or being protected from abuse or neglect. No personal connection is needed, yet the advocacy is vitally important.
I discovered that ICA was doing outstanding work in some of the toughest challenges: recruiting protégés who were especially vulnerable, especially in the young and old age groups; recruiting protégés who were unable to reciprocate in a relationship; and, related to this, recruiting protégés who needed only instrumental advocacy. Julie and Joanne were being successful in finding such protégés and in finding individuals who could take on the incredible challenges of being their advocates.
In 2002, I embarked on a little research project, with Julie’s assistance. In her regular follow-along discussions with advocates, she asked how many hours they had spent during the previous month on behalf of their protégés. With this information, I was able to compare citizen advocacy and paid advocacy. A paid advocate, doing what is called individual advocacy, has only a limited number of hours per week to take actions on behalf of various clients. A citizen advocacy programme, by recruiting advocates, gradually creates a network of ongoing advocacy in the community, with the different citizen advocates spending far more hours in total than any individual could do.
There are other differences too. Paid advocates are trained and often quite skilled due to their ongoing work for different clients. Citizen advocates, in contrast, develop a deep understanding of their protégés over a period of months and years, and thus, despite lack of formal training, may be able to respond to their needs in a way impossible by any paid worker.
My conclusion in the small study was that a well-functioning citizen advocacy programme can compare favourably to paid advocacy in cost effectiveness as well as the quality of advocacy.
Heather and Lyn, Citizen Advocacy Sunbury & Districts, http://casunbury.net
My study was part of our efforts to defend citizen advocacy from hostile attitudes among some of the staff in funding bodies, who looked at just the number of advocacy actions by paid staff. So they looked at paid staff doing individual advocacy and saw figures of maybe three to five actions per working day: the paid advocate was seeing several clients daily, perhaps going to a meeting with them or visiting to ensure they are being looked after. The funders then looked at citizen advocacy programmes and said, well, you made twelve matches last year. That’s not very many actions. The funders did not take into account all the actions by the citizen advocates, who are unpaid.
This sort of bias in measurement seemed ridiculous to me, and I suspected there was something deeper, namely that funding bodies want to maintain control through close monitoring of the operations they fund. When they fund paid advocates, the monitoring is easier than with systems advocacy or citizen advocacy, in which members of the public are empowered. Who knows what they might do?
The Department of Family and Community Services organised a review of advocacy across Australia. The department’s lack of understanding of advocacy was apparent in the very title of the review, which referred to advocacy “services.” Advocacy is not a service like housing or education, but rather a voice on behalf of vulnerable people with unmet needs.
The review provided the pretext for the department’s agenda, which turned out to put the squeeze on systems advocacy and citizen advocacy, applying pressure on programmes to convert to paid advocacy. Some citizen advocacy programmes closed rather than switch. Illawarra Citizen Advocacy changed its name to Illawarra Advocacy and diverted one quarter of its funding to maintaining its citizen advocacy operations.
This was a hard choice. The alternative might have been to cease funding of citizen advocacy altogether. On the other hand, an effort might have been made to find an alternative way of maintaining support for the dozens of relationships that still existed.
Over the following few years, the parlous state of citizen advocacy in the Illawarra continued. The crunch came in 2014, when a decision was made in Illawarra Advocacy to remove the one quarter of its funding directed to citizen advocacy and use it instead for paid advocacy. A letter went out to advocates informing them of this development. The letter displayed a lack of understanding and respect for citizen advocacy in saying that protégés could seek help from the paid staff. This failed to grasp that the relationships between protégés and advocates are freely given and not an arrangement that can be transferred at someone else’s invitation. It would be like writing to family members who had stood by their children or siblings with disabilities and saying that now they could turn instead to paid staff.
Michelle and Zak, Citizen Advocacy of Atlanta and DeKalb, USA, http://www.citizenadvocacyatlantadekalb.org/relationship-stories/michelle-zak/
Illawarra Citizen Advocacy, when it was most active, was one of the world’s leading programmes, creating and supporting many dozens of relationships, including ones with vigorous advocacy on behalf of highly vulnerable people. Yet in the space of a few years, the understandings and commitment that had made this success possible dissipated. A combination of resistance to citizen advocacy by government bureaucrats and lack of understanding by newer staff and board members led to the drastic actions that undermined the programme.
The options for the future are not promising. Wolf Wolfensberger, whose ideas led to the initial setting up of citizen advocacy programmes in the US in the 1970s, recognised the way human services — hospitals, prisons, welfare — started out as idealistic attempts to improve people’s lives but then degenerated into operations to control people and serve the interests of the staff in the services.
Wolfensberger’s model for citizen advocacy was built on the insight that advocacy needed to be freely given: it was not paid or given course credit. This meant the advocates had the independence to speak out and challenge services that were failing to do the right thing. The advocates did not need to worry about losing jobs or connections: they were concerned only about the protégés.
Wolfensberger thought that finding protégés and advocates and making relationships between them needed to be done by paid staff, in order to attract and maintain people with suitable skills. But obtaining the money to support programmes was a challenge. Wolfensberger saw that funding needed to be diversified, so that if an advocate challenged a funding body, and the body withdrew funding in reprisal, the programme could continue. In the US, where citizen advocacy began, obtaining funding from several different sources has always been a challenging task, and citizen advocacy has never expanded to meet the huge level of unmet needs.
In Australia, obtaining funding from several different bodies turned out to be almost impossible: private funding is far less common than in the US. Australian citizen advocacy programmes were able to obtain government funding, and for a time there was a golden age of citizen advocacy (though it seemed difficult enough at the time). When attitudes within government departments hardened against systems and citizen advocacy, the programmes were highly vulnerable, and many of them made the switch to paid advocacy at the government’s behest.
Wolfensberger recognised that advocates needed to be unpaid, but did not foresee that having paid coordinates introduced a serious weakness in the model, one that would limit the expansion of citizen advocacy and eventually undermine most citizen advocacy in Australia. Perhaps it is time to consider a modification of the model, running all the operations of citizen advocacy on an unpaid basis. Not easy, but neither are the alternatives.
Acknowledgements I thank numerous individuals involved with Illawarra Citizen Advocacy for valuable comments and inspiration,.