Published in the Illawarra Mercury, 1 November 2006, p. 22. Passages omitted in the published version are indicated by square brackets.
Elizabeth, at age 12, weighed less than 5kg and was in an institution because her family did not offer protection. Sofia undertook to improve Elizabeth's life, and was able to find a caring family for her to live with.
Some people with disabilities are extremely capable and well able to assert their rights. But others, especially those like Elizabeth with serious intellectual disabilities, are highly vulnerable to abuse, neglect, imprisonment and homelessness.
Unfortunately, services for people with disabilities are less than perfect. Therefore, the most vulnerable and voiceless of these people need someone else to speak for them. That is the role of advocates, mostly funded by the federal government.
Some advocates are paid to speak on behalf of individual clients. Others try to address the systemic factors that lead to problems. Then there is citizen advocacy.
Illawarra Citizen Advocacy is funded to seek out the most vulnerable people with intellectual disabilities. The needs of these individuals, called proteges, are carefully analysed and then a suitable member of the community is sought to be the protege's advocate on an unpaid basis, as long as necessary, sometimes for life.
Sofia was a citizen advocate for Elizabeth.
The relationships set up by the programme are highly effective in ensuring proper treatment in accommodation, health, legal and other areas. Their stories are incredibly moving.
Illawarra has one of the world's most successful citizen advocacy programmes. Over 70 relationships are currently supported, meaning that 70 vulnerable people with intellectual disabilities have advocates who are highly knowledgeable about their needs. Vigorous advocacy is provided at a fraction of the cost of paid advocacy.
All this is at risk due to a review of advocacy services in Australia by the federal Department of Families, Community Services and Indigenous Affairs. The department's plan is to impose a one-size-fits-all model, irrespective of the impact on quality advocacy. Citizen advocacy doesn't fit the model.
No one expects to have brain surgery or radiotherapy carried out by a general practitioner. In medicine, specialisation is unquestioned as a way of improving the quality of care.
But in advocacy, the department will expect all services to provide all types of advocacy: individual, systemic and citizen advocacy. Specialisation will be phased out, and along with it the immense skills of experienced advocates.
[The spurious rationale for this levelling process is equity: Anthony Bartolo, manager of the advocacy review, says that everyone has to have access to advocacy, and that high quality advocacy for some people is unfair to those who can't have it.]
[This is like saying that there should be no funding for brain surgeons, because not everyone needs brain surgery, and not everyone who does has access to the most talented surgeon. Instead, by Bartolo's logic, all specialists should be replaced by GPs.]
One of the proposed advocacy innovations is a national hotline, so callers from all across the country can request help. But what about the homeless disabled person, or the one in prison being abused by guards? What about the people, like Elizabeth, with disabilities so severe they cannot speak?
[The hotline is most likely to be used by those who are relatively articulate, whereas those who are voiceless will remain so.
Indeed,] the entire advocacy review seems designed to reduce forms of advocacy that are preventive and ongoing, replacing them with a band-aid approach. Those whose problems are invisible will remain out of sight.
[The review, rather than evaluating outcomes and rewarding proven performers, is imposing a lowest common denominator.]
Advocacy services are going to be put out to tender. The result is that many current services are afraid they will lose funding if they protest. Ironically, those who are paid to encourage speaking out are being muzzled.
Some people in the advocacy sector believe the government is trying to silence anyone who might criticise government.
Those who will pay the price are the most vulnerable people in the community.
Brian Martin is a social scientist at the University of Wollongong and on the board of Illawarra Citizen Advocacy.