By Erin Snelgrove
It would seem everyone’s an advocate these days; you might participate in Earth Hour to pledge support for the environment, march in opposition to war, or lobby your child to do their homework – the possibilities are endless! However, a new Melbourne based company, providing independent fee-for-service patient advocacy is raising eyebrows. In an Australian first, the company is emulating common practice in the United States and Europe, offering the services of an independent professional engaged and paid for by a client to help achieve a particular health outcome.
Australia has more than 600,000 community organisations ranging from animal welfare societies to large organisations like Mission Australia, all of whom advocate on behalf of some person/s or issue and work to give the community a voice, let people know there are alternatives, generate debate, raise awareness and influence future agendas and policy.
These non-government organisations (NGO’s) play a vital role in advocating for the community, playing a central role in the democratic representation of our interests; and at the core of their work is the provision of professional, specialized and experienced advocacy services. Importantly, these organisations are funded through a mix often comprised of government funding and private donations – they do not charge for their services and as such offer an equity in their accessibility.
Steve Hambleton, president of the Australian Medical Association (AMA) has raised concerns that the introduction of private advocates charging individuals for services that should be undertaken by a family member, friend or carer, and that issues around communication between a patient and their caregiver should instead be addressed with more resources. But is that realistic?
Have you ever felt like you needed some support in negotiating the medical system; negotiating with health insurance companies, organising second opinions or resolving conflicting opinions – maybe you just needed someone to come with you to an appointment? Demand sees the new company, Patient Advocate, planning expansion into New South Wales and Queensland in its first year of operation. Lawyer Claire Crocker, owner of Patient Advocate, maintains that ‘’people are not people any more, they are a patient to be moved through, you might have a relationship with a clinic these days, but not one doctor, so the burden is really on the patient to ensure there is continuity in their care.’’
The dilemma has caused us to consider how advocacy, in its many guises, works to represent the best interests of those advocated for because, at the heart of it all, is an individual.
Self advocacy is undertaken by a person or group of people on behalf of themselves. If it is a group of people self advocating they typically share the same characteristics, interests, or needs.
Imagine an Australia where car-related injuries and fatalities are considered an unavoidable part of everyday life… Advocacy for seat belt legislation was initiated in the late 1960s by Australia emergency doctors who noted that seatbelt wearers were less likely to be seriously injured in collisions.
Compulsory seatbelt laws, accompanied by a community education campaign, were introduced in Victoria in 1970, followed by the rest of Australia and then other countries during the 1970s and 1980s – a move that has resulted in dramatic reductions in death and injuries caused by car accidents.
Speed, drink-driving and other car-safety messages have had similar results in recent years.
Individual Advocacy is when an advocate concentrates their efforts solely on advocating for one or two people. The advocate could be a staff member of an organisation, a carer, family member, friend or volunteer. This type of advocacy is focused on the specific needs or situation surrounding the individual or person with a disability.
Nola is a young, Indigenous single mother of a two year old daughter. She became homeless when she left a violent relationship, and has been homeless for three years. Nola’s family has a history of homelessness: her mother lost her public housing property as a result of anti-social behaviour and debt. Nola left school at 14. She speaks English as a third language, and her literacy is poor.
Nola was referred to a tenancy support and social housing program for women escaping domestic violence. She was referred to a program to help her address past family violence and sexual assault issues. She attended literacy classes and is now able to read to her daughter. She also learnt how to cook healthy, tasty meals for herself and her child.
Nola appreciated the ?exibility of the service: she was able to ring the program and change appointments if she had cultural obligations including sorry camps or funerals.
Systemic Advocacy is primarily concerned with influencing and changing the system (such as legislation, policy and practices) in ways that will benefit people as a group. Systemic advocates will encourage overall changes to the law, service policies, government, and community attitudes.
This form of advocacy does not usually involve individual advocacy as it can cause a conflict of interest around the resources that are being generated and the purpose of the advocacy in general.
For almost two years, Graeme Innes AM urged RailCorp NSW to get serious about its obligations towards Sydney’s rail passengers with disability by ensuring that its trains provide audible ‘next stop’ announcements.
The Public Interest Advocacy Centre (PIAC) represented Mr Innes. After mediation with RailCorp failed, Mr Innes sued the state-owned rail corporation in the Federal Magistrates Court, alleging its failure to provide audible announcements breached Federal Disability Discrimination law.
In a landmark decision delivered this morning (1 February 2013), the Federal Magistrates Court sided with Mr Innes. Federal Magistrate Kenneth Raphael ordered RailCorp to pay $10,000 in compensation to Mr Innes. Magistrate Raphael said Mr Innes had suffered indirect discrimination, and RailCorp had been ‘reactive and haphazard’ in its response to Mr Innes’ complaints.
PIAC Chief Executive, Edward Santow, said court action was taken to ensure RailCorp complied with its obligations under the Disability Standards for Accessible Public Transport 2002. He said Mr Innes, who is blind, is entitled to use public transport services without discrimination. ‘Audible train announcements are crucial because they allow passengers with vision impairment to know they are getting off at the right station,’ Mr Santow said.
Mr Innes, who is the Disability Discrimination Commissioner, took the case in his private capacity. ‘All I wanted was for RailCorp to do what they do for everyone who is able to read print. That is, tell me where I am,’ he said.
Each state and territory in Australia has an independent statutory body charged with promoting the rights and protects the interests of people with impaired decision making ability through guardianship, advocacy and education as the legally appointed substitute. In NSW, under the Guardianship Act 1987, the Guardianship Tribunal or the Supreme Court can appoint the NSW Public Guardian or the NSW Trustee and Guardian to take action and make decisions as guardians, legally the same as if the person under guardianship had made them themselves.
Working with people with disability such as dementia, intellectual disability, brain injury or mental illness, the NSW Public Guardian is only appointed when there is no other person able to take on the role, and advocate at individual and systemic levels on behalf of people with impaired decision-making capacity.
Liam was in his early 30’s and an inpatient in a psychiatric hospital when he first came under guardianship in 2005. He has a range of cognitive difficulties including alcohol related brain injury, chronic disorganised schizophrenia and polysubstance abuse. He had several admissions to psychiatric units and had been homeless over the years.
Liam was transferred to another mental health unit in the Illawarra region in 2007. In 2010 staff began to develop a graduated discharge plan for Liam involving increasing periods of trial leave at a group home managed by the hospital. However, Liam became very unwell and was physically intimidating to others. The trials have shown that Liam cannot manage in the community without an individualised model of support.
Liam’s status has changed from involuntary to voluntary, but there are no plans for his discharge in the foreseeable future, due to a lack of suitable accommodation options.
We’re hopeful the Ombudsman’s inquiry will shine a light on the lack of community accommodation for people like Liam. Article 19 of the UN Convention on the Rights of Persons with Disabilities states that people with disability have the “right to live in the community, with choices, full inclusion, participation and enjoyment equal to others”.
There are many more people just like Liam who remain in hospital.