“Taking away the basic human rights of people living with disability and making choices on their behalf is a serious matter and it is often done without consistent scaffolding state to state and safeguards to ensure it supports instead of controls and dehumanises”, said Mr River Night today.
“Interestingly most people have no idea how the Guardianship and Administration role is regulated and delivered. I was fortunate enough to work in several statutory roles within the Guardianship agency in Queensland through the Office of Public Guardian and along side administrators and the Queensland Civil and Administrative Tribunal, that makes Guardianship and Administration orders in Queensland, including work as a senior Guardian. This model in Queensland is often used as an example for other states to work towards as the model of best practice. They may all argue about that though and I saw that working around the country over the last 30 years. It allows me to discuss the process nationally as the systems and processes are very similar and unfortunately experience the same policy and legislative constraints that can undermine good supports to people that need it the most.
“The Royal Commission Report has created an opportunity to talk about and raise uncomfortable truths and an area of disability support that is often shunned.
“While we recognise how hard this role is for Guardians and Administrators and we see a good system with procedures possible, it is still done at arm’s length and has removed the human from a very human experience when it comes to making choices about our own life.
“People don’t like talking about this area of the disability sector because it soon becomes a mine field for personal values and good intentions which have led the way for many of the worst human rights atrocities in human history. We have a ‘duty of care to protect’ is the phrase often used to justify abuse of powers and destruction of the basic human rights of people living with disability.
“A clear picture created by the Royal Commission is a country where each state does the same things differently, uses different terms of reference and processes and demonstrates a variety of good and poor practice in the realm of Guardianship and Administration. If you are going to take away the rights of a person with a disability, does it matter what climate you are in or what longitude and latitude your case is. We have a commitment to international rights so why can’t we, as a country, make up our mind how to do this without each state wanting to be special and then create a lack of consistency. We are inconsistently approaching the same matter but consistent failing to safeguard people in all states. We just fail at this in unique ways state to state at times.
“This inconsistency about capacity assessment, orders and ability to consent also means that legislation makes it criminal for adults and those that work with them to make decision about the basic parts of life, such as sex, relationships and identity. In some cases, the fact that a person has an intellectual disability of some kind could put them in hot water and not allow them to legally consent to marriage, contracts and intimacy. Service providers are then so scared and unsure that they opt to discourage any expression of sexuality or seeking of relationships ’just in case’ it goes badly and ‘something’ happens and they are accused of not demonstrating their ‘duty of care’. As a young person I knew once said ‘this just sucks for everyone involved’.
“A 35yo man I worked with years ago once summed it up by saying ‘my guardian and my service provider are happy if I ask them to help me decide about going to a day program to do colouring in and make biscuits, but if I mention I want to go on a date, stay over at a friend’s house or god forbid buy condoms they freak out’.
“The Royal Commission report has recommended a name change to use words like ‘support’ instead of ‘assist’ and ‘substitute’ instead of more formal terms. The response to this in the sector is mixed.
“When people with disability have the right to make a choice formally taken from them, this is a serious matter and very scary. Making it sound warmer and fuzzier doesn’t soften the fact that you are taking my right way from me to be self-determined and make my own decision. I am not sure I want that sounding any less formal and scary than it is. I want you reminded you are not supporting me, you are acting as a formal delegate and officially making my decisions and breaching my human rights with government approval. If you ‘restrain me physically’ while you inject me with medication in a hospital, it won’t feel any nicer if you describe it as ‘supporting me to receive health care’. I think I prefer we keep it sounding as scary as we can personally to remind all involved this last resort methodology is what it is, said Mr Night.
A key point in volume 4 of the Royal Commission Report section 2, page 89, regarding the current implementation of disability rights it says,
Under current Commonwealth, state and territory laws, there is limited legal
protection of the rights recognised in the [Convention on the Rights of
Persons with Disabilities] (CRPD) and a lack of effective remedies when rights are breached.
When the laws in our country can’t protect us can we at least not try and make it ‘sound better’. Do we want to change the term ‘Police Officer’ to ‘Community Supporter’. When you arrest me or give me directives, I don’t feel any more or less intimidated because you have a different name. You still have a gun and the power to take away my rights. Regardless of if the action is justified or best practice lets call it what it is so its easier to ensure it is given the weight it should.
“The Royal Commission has talked about models for supporting decision making. Yes, this is the model we already should be using and it is always talked about as best practice. The problem is no one is making sure it is done. Again, a lack of safeguarding and practical checks and balances. But who is going to do this support? The appointed Guardian from a Government Agency that has no time or capacity to do this. Should it be the service provider that delivers services that require decisions? Do I ask the plumber giving me a quote to do my plumbing job, for support to decide to use them instead of another plumber? That’s stupid, isn’t it? Doesn’t that mean a total conflict of interest? Does it need to be a third party agency totally separate that just does that role? Isn’t that the point of having the Government Guardian and Administration delegates? Maybe we should increase their scope and funding a little to allow time to do those things independently or like most things Government do, will it cost 10 times what it would cost if we just got a non-government agency to do it instead. Maybe the solution is to replace the millions stripped from advocate groups when NDIS rolled out 10 years ago and fund them to do the role of advocacy and support for life decisions, independent of service providers that may or may not be shonky and Government departments that cost too much anyway to do the same role.
“If a person has a significant intellectual disability, cannot talk or communicate in a significant way and does not appear to have the ability to understand what is being said, the decision is them made on that person’s behalf without ‘support’. Who then checks that this is the best decision? A Guardian that has no time to visit and get to the know the person to see if this is the best fit for them on a personal level, a service provider that promises they wont influence decisions in their own favour, a family member that may prefer to be in the role of ‘mum or dad’ instead of the person that has to make hard decisions, or an advocate that can focus totally on the person with good boundaries and human rights at their core?
“Administration for financial decisions in my experience usually means the person never has savings and money available because the administrative staff give out the persons money when ever asked. I worked with a young man that always managed to talk his administration into giving him hundreds of dollars extra every year at Christmas for buying Christmas presents for his family, yet he had never purchased his family a Christmas present for them and spent it on alcohol and drugs. If bills are paid the left-over money is rarely, sensibly saved and is usually just given out to be spent on smokes or alcohol resulting in a person that needs support being regularly faced with financial problems. Support is not about the bare minimum by agencies that don’t have time or resources to help a person that needs to develop financial skills. At the same time do people have the basic human right to make bad financial decisions. Yes, they do. The current administrative system may help to an extent to check core bills are paid but they do not have the resources to do more than that which is a wasted opportunity and creates a financial limbo.
“The word Guardian creates a sense of ownership and responsibility for the wellbeing of another. This is far from the reality of the role of appointed Guardians sadly. The role is to make formal decisions on behalf of a person when a tribunal formally decides that a person does not have capacity to make certain decisions based on medical advice. As a formal decision maker, the role has to remain objective and independent while providing decisions that have subjective and life changing impacts for the person living with disability, their family and stakeholders in their life. While they make these decisions, they have no power of coercion in that they can’t force people to do what they want anyway. They make a decision about where person should live but they can’t force them. They can be passive aggressive and say they won’t sign the lease but still there is no big stick they can use beyond what they will and wont sign. A lot of the time service providers and the community don’t understand how the role works and may not even be aware a person has an appointed Guardian so the guardian can’t deliver the function a lot of the time until invited or some one reports a problem.
“In the Guardianship legislation it emphasises that people must be supported to make decisions and that all stakeholders should be engaged when a Guardian is providing a decision. The reality is that unless the person is generally onboard with the decision it is hard to deliver the role anyway given the total lack of powers to force people into compliance. Of course, those people with significant intellectual disabilities may be unable to fight against a decision so it tends to be a simpler process when the person lacks an understanding of their human rights. That is a double-edged sword and very concerning.
“The obsession with independence and objective decision making about extremely personal parts of a person’s life means that Guardians often can’t do case work and get involved in the day-to-day delivery of supports. They stay distanced and with case loads that are unmanageable they don’t have time.
“The discussion of informal supports for decision making were also raised and while this is preferred there is no informal way to formally remove a person’s human rights, so it becomes mute as a matter where different opinions are raised.
“If a person living with a disability that is deemed unable to make decisions has only service providers in their life predominantly, a Guardian appointed to make decisions on their behalf who can’t visit them much more than once a year and who cannot do case work and personal support, who is the safeguard?
“Guardians are the last resort, and the tribunal will look at all other options first. It ideally will be someone in the person’s life that knows them unless there is some sort of issues or controversy. Unfortunately, even family members who are appointed struggle. While a family member may be appointed to make decisions about where a person lives this can often be over stepped and the person with a disability finds that at the age of 35yo their parent is telling them what they have to wear, where they can go and what they can do which is far from the powers and limits of what the Guardian is appointed to do but how is this challenged and monitored? This is often a hard role for family also who may prefer to play the role of family instead of statutory agent. We then see fantastic family members not appointed when they should be also which is a shame as they often end up doing the work anyway.
“The disability sector is calling for a consistent system and this cant be delivered by bureaucrats and lawyers alone. It must be created by people with disability. There are people that do not have others in their lives to support them making decisions or to make decisions on their behalf so there will be a need for formal appointment and independent roles at times. How this is delivered in line with human rights to ensure the human part of this role is not disregarded is key.