Guardianship powers are removing rights of people with disability

Posted 1 year ago by Alex Jacobs
Kaye Eastman guided public hearing 30 as the Senior Counsel Assisting. [Source: Disability Royal Commission]
Kaye Eastman guided public hearing 30 as the Senior Counsel Assisting. [Source: Disability Royal Commission]

The Royal Commission into Violence, Abuse Neglect and Exploitation of People with Disability has finished sitting for its 30th public hearing, having met to discuss concerns around guardianship, and substituted and supported decision-making.

It examined the personal experiences of people with disability who have been placed under guardianship or administration orders for healthcare, financial and other day-to-day matters.

An estimated 50,000 Australians are currently under state control, meaning they do not have any legal capacity to make decisions about their own lives.

Witnesses with disability spoke of their loss of autonomy, the trauma caused by guardianship decisions and the need for supported decision-making processes.

Independence lost to guardianship

The Royal Commission began with impactful evidence from *Anthony, a 27-year-old Aboriginal man speaking for himself and his mother, *Killara.

Killara was a member of the Stolen Generation, was a child diagnosed with epilepsy, and lives with a cognitive impairment. Anthony was a state ward until he turned 18 and had minimal contact with his mother growing up.

Anthony explained to the Royal Commission how he reconnected with his mother at the age of 19 after driving past her on the street in Perth, and he went about the process of becoming a carer for her.

While setting up supports for his mother, an unknown person made an application for her guardianship, which was approved in 2015.

He found out during the public hearing that one of his mother’s social workers had initiated the application that led to the State Public Advocate being appointed as her guardian for all decision-making purposes.

The Public Advocate placed Killara in an unnamed facility where she lived until this year. Anthony says it was a confronting place to visit.

“I think first I was shocked,” explains Anthony, “The facility was locked. You had to get a code to get in.

“It was very horrific the things I have seen there. Mum, she’d say a lot of things to me. She was the only Aboriginal lady there too.”

The loss of independence and wellbeing were recurring themes during Killara’s time under guardianship. Anthony says she became dependent on carers for personal care despite her completing those tasks herself when living with him.

“I would sit there trying to have a yarn with my mum, talk to my mum, and she could not respond. She would sit there and stare at me,” says Anthony.

Anthony, who is now Killara’s medical guardian, learnt that the Public Advocate guardian had prescribed her monthly anti-psychotic injections for a five-year period even though the medication was not needed.

Her health was also neglected during that time period – there were physical signs of untreated diabetes, an untreated hepatitis C infection that led to cirrhosis of the liver, and her teeth have since been removed due to a lack of dental care.

As her new medical guardian, Anthony says he always gives Killara options so she can have control over her health – this includes taking her to a dedicated Aboriginal health clinic.

“I would always get mum to speak to the Aboriginal staff members at the Aboriginal medical service, not me be in the room, because woman’s business is woman’s business. Men shouldn’t be in there,” explains Anthony.

“My mum was able to talk openly to the female staff, express her concerns or anything regarding her health. I would always empower my mum to speak. If she ever needed someone to speak for her then I was able to speak.”

State Trustee silenced people with disability

Uli Cartwright, 27, was placed on an administration order by the Victorian Civil and Administrative Tribunal (VCAT) in 2015, meaning the State Trustee was in charge of managing his finances.

Born three weeks premature, Mr Cartwright lived in the hospital until his third birthday, before he moved in with a foster family.

He lives with a chronic lung condition, an intellectual disability and several physical medical conditions. He uses a percutaneous endoscopic gastrostomy (PEG) feeding tube and has managed his medical needs independently.

In 2013, Mr Cartwright moved into a group home under the support of a disability service provider, contributing to household bills and shared food expenses while receiving the disability support pension (DSP).

Mr Cartwright acknowledges that he “didn’t pay his chemist bill frequently” as a teenager and may have spent too much money on video games and DVDs.

But he says his support worker never held an official conversation about concerns over his finances and the administration order was placed without his knowledge or input.

“I don’t recall ever being told about the hearing and I did not attend the hearing,” says Mr Cartwright.

“I was never given the opportunity to have my voice heard. I didn’t have support to represent my interests and decisions were made for me by others who supposedly knew what was best for me without so much as hearing my voice.

“I did not lack the skills to articulate and express my own views. Instead the whole process I was silenced.”

The State Trustee deposited money into his bank account for three years and he had to request additional funds well in advance for education or potential holidays.

“I can’t even go to the bank and ask to withdraw money because if it’s over the limit, there is no money there,” says Mr Cartwright.

“You get given a card that State Trustee transfers money on a day that is predetermined, and if it’s a dollar or two out of your agreed spending range you have to get an invoice and it takes two weeks.

“You can’t do anything. You just stop existing in an odd way because you can still live, you still have freedoms, but you don’t have freedoms.”

Mr Cartwright’s administration order was renewed on an interim basis on March 2019, as the VCAT ruled he still needed an administrator due to his disability.

Mr Cartwright had to participate in a financial independence program, the first time in three years that he had been afforded an opportunity to show he could manage his finances independently.

His administration order was removed in September 2019 after he clearly demonstrated he could make his own financial decisions.

Mr Cartwright says he would have never been put under the State Trustee if he did not have an intellectual disability.

“If I didn’t have a disability I could have blown all my Centrelink payments the same day I got paid, I could have spent it on whatever I wanted,” says Mr Cartwright.

“The difference between me and someone who has the freedom to make really bad financial decisions is that I have an intellectual disability and somehow that automatically meant that I wasn’t capable of any financial decisions at all.”

He says it’s frustrating that people with disability are at risk of being controlled because service providers focus on making their work easier by placing administration orders on clients.

Rights for older people with disability

The Royal Commission also looked at the rights of older people with disability, hearing from Older Persons Advocacy Network (OPAN) Chief Executive Officer (CEO), Craig Gear.

Mr Gear spoke of the importance of enshrining decision-making rights for older people with disability in law, as a follow-up to the United Nations’ Convention on the Rights of People with Disabilities.

He says that Australia’s Charter of Aged Care Rights, as part of the Aged Care Act 1997, is not enforceable when it comes to guardianship or power of attorney.

“When I have discussions with aged care workers and providers they say it’s [the Charter] nice to have but it’s just a piece of paper,” says Mr Gear.

“Older peoples’ criticism is that it’s just a piece of paper and not enforceable. We need enforceable mechanisms and recourse if rights are breached.

“There needs to be legislated rights and legislated consequences and compensation if those rights are breached.”

Mr Gear wants to move away from a protectionist model, in which the individual is shielded or hidden away from decision-making, to a supportive decision-making model.

“We think this is the framework that should be a mainstay of the system in all aspects despite or even when there are substitute decision-making parameters or orders for a public guardian are in place,” explains Mr Gear.

“This is the framework that all older people and all people with a disability, should be able to access.”

Mr Gear also reflected on the way people with disability and older people with dementia are spoken to and acknowledged his own past behaviours as a nurse were not inclusive of supportive decision-making.

“Even in basic activities of daily living, we take away the right of that person to be in charge… No one would come and talk to me in that manner… but when someone is living with disability or is a person with dementia we do take away that right,” says Mr Gear.

He believes it’s important for all people with disability to forward plan for supportive decision-making, and can use a supported decision-making toolkit or an Advance Care Directive. These tools can protect people with disability and outline who can assist with ensuring personal choices on ageing are followed.

*Some names have been changed during the Royal Commission to protect witnesses’ anonymity.

The Royal Commission will hold the 31st public hearing from 12-16 December, focusing on a ‘Vision for an inclusive Australia’.