How our society cares for and responds to people with disability in our community is in focus. (Image source: UNDP Europe)

By Jack Paech

In February of this year, a video surfaced of distraught nine-year-old Quaden Bayles crying in the car with his Mother after being bullied by classmates for having achondroplasia – a rare form of dwarfism. In the video – which went viral before being hastily deleted – Quaden is mid-breakdown, shaking through tears and making comments such as, “I want to die right now. I want to kill myself.”

Do you need support?

This confronting video of the young boy with a disability is emblematic of a wider issue: how we respond to disabled people. Members of the Bayles family were also among 36 witnesses to a recent string of hearings held by the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability.

But vulnerable members of our society don’t just face discrimination and vilification as they attempt to navigate the outside world. As the royal commission reveals, people relying on the aged and disability care systems can be mistreated by the same people being paid to facilitate their needs and help them engage with the local community.

The issue of who should be held accountable for malpractice in the aged and disability care sectors is far-reaching. Federal and state governments have been repeatedly lambasted during the COVID-19 pandemic for not taking the appropriate measures to protect vulnerable people – with 1401 deaths across Australia traced back to government-subsidised care facilities at the time of writing.

Though the disability sector has safeguards and committees in place to scrutinise cases of malpractice, the validity of such safeguards has been called into question over the last few months, and the Morrison government have borne the brunt of this criticism.

“Just one fine has been issued and only one provider banned by the disability watchdog despite more than 8000 complaints being lodged in the past two years,” writes Rob Harris for the Sydney Morning Herald.

The sole fine – which amounted to $12,000 dollars – was passed down to ironically-named Integrity Care after client Anne Marie Smith died in what the media called “a shocking case of neglect”.

Ms Smith was taken to hospital with severe pressure sores and rotting flesh, which led to her immediately being placed in palliative care upon her arrival. She died of septic shock and organ failure. Detectives say she had been sitting in the same chair for over a year before being taken to the Royal Adelaide Hospital.

Ann Marie Smith’s tragic passing is an extreme example of neglect at the hands of an agency which was supposed to provide care and support.

She was let down by the system, Integrity Care and her ‘carer’, who is facing a charge of manslaughter, and who has been bailed to reface court in April next year.

However, this deeply disturbing incident has galvanised the discourse surrounding the quality of care work, whilst also emphasising the need for integrity, honesty and moral fibre in an industry whose very existence is predicated on those characteristics.

In the wake of Ms Smith’s death, suggestions of ways the industry can safeguard the most vulnerable in our community and repair its reputation offered up have included more regulation of care organisations’ processes, closer checking of care workers’ activities and assigning more than one carer to a client.

According to Meg Paech, the general manager of Yellow Door, a private home care organisation based in South Australia, careful talent selection and quality training are also vital.

“The single biggest quality that I think a care worker must have is empathy,” says Meg.

“A worker needs to be kind, thoughtful, sensible and reliable – clients really do rely on the support and so it’s essential workers turn up when they say they will.

“Like every other job, too, an attitude to continuous improvement, learning from mistakes and wanting to do better are excellent qualities.”

The crux of personal support work, as reflected in the NDIS’ (National Disability Insurance Scheme) mission statement, is about facilitating a sense of independence for vulnerable people – to “help a person in their daily life and help them participate in the community and reach their goals”.

This ethos is shared by the many institutions dotted across the country that provide support for people with disabilities, in part because the NDIS supplies audio-visual training packages for new employees.

Yellow Door Care sticks loyally to the tenets of the NDIS, prioritising selflessness and perceptiveness in their employees and in the way they operate.

“People with disabilities should get the care and support they want; not what others think is best for them,” Meg says.

“The training videos seek to reinforce this principle so that workers are conditioned to listen more closely to the wants and needs of the clients.”

As the industry works to repair its reputation and reassure the public, there are many positive stories within the sector that revolve around support agencies and the profound relationships between support workers and their clients. Sadly, it’s too late for Anne Marie Smith. But there are passionate people within the industry working to ensure clients live with dignity, can achieve their potential and participate to the fullest degree in their community: all opportunities Ms Smith wasn’t afforded.

Sandra Hanley is a lecturer of allied health at TAFE SA. Sandra has a disabled son herself, which puts her in the unique position of being involved in disability care from an educational perspective while also having personal stakes in the improvement of how people perceive and interact with disability. Over the last year, Sandra has become an advocate for home care, as she has seen her son – who has Prader-Willi Syndrome – thrive under these conditions, especially compared to when he lived in a group home.

Prader-Willi Syndrome is a genetic disorder marked by constant hunger, low muscle tone, hormonal deficiencies and a range of intellectual issues like speech and language issues and an inability to follow instructions, as Sandra explains.

“It’s just not comparable,” she says.

“His quality of life is so much better than it was when he was in community living. The quality of carer now has improved immensely. We’ve been able to match carers with his interests; we weren’t able to do that in group care.”

When in home care, people with disabilities can be supported to take care of themselves and engage with the community, as their carers are able to focus on their needs without having to juggle a group of people at once.

“Seeing my son take his own health seriously since moving back into the home environment has been really rewarding,” says Sandra.

“He’s taking ownership over his own health and wellbeing. It’s been good to see him do activities in the community with little support.”

Sandra and her son’s carers work closely together to ensure that he is able to keep connected with others and look after himself and his house. One of his carers, Ashleigh Warren, has been working with him for most of this year and has grown very close to her client as she helps him with a range of tasks – from grocery shopping to helping him tend to his garden.

“I’ve seen him go from being fairly shy and reserved in his day to day life to being comfortable with people he recognises and knows,” she says.

“On our first few visits to the op shop together, he wouldn’t answer questions directly from staff, preferring for me to talk to them while he stood back and watched. Now, he walks up to them to start conversations and talks to them about his week, his football team, or if he’s looking for anything in particular that day.”

This can be one of the most important aspects of one-on-one care: helping people form profound connections with other members of their community, which has the additional benefit of nurturing a greater understanding of disability in members of the public, through positive, first-hand experiences.

“I think helping the client find their autonomy helps give others an understanding that disability is not something to be scared of just because they may not know how to interact with them, or might be scared of offending them,” Ashleigh continues.

“I like to talk about my work and experiences with friends and family, too, to give them an understanding of the different ways the people I work with are impacted by their disability.”

The idea of facilitating the social lives of disabled people is enabled by home care because this form of care work allows the personal support worker to really get to know their client, to shape how they express empathy in a way that directly aligns with the personality of the person they are looking after. In this sense, home care is the perfect environment for developing meaningful relationships, and for building bridges between people that – on the surface – initially seem to have very little in common.

“It [being a support worker] gives me a chance to slow down my thinking, just focus on what we’re doing in the moment if just for a day, and see the world from another perspective,” says Ashleigh.

It’s here where we begin to see how these relationships can be fulfilling for everyone who participates in them. The person-to-person care that this system provides is one that allows kindness and understanding to flourish, and provides a foundation for society at large to create environments where people with disability feel accepted for who they are. But it’s just that – a foundation.

“The challenge is having other people and services understand how they can support somebody who needs a little bit of extra support,” says Sandra.

So, it begins with the personal care assistant: it begins with them helping their client brush their teeth in the morning; it begins with them helping their client navigate the towering aisles of the shopping centre; it begins with freedom, independence, and quality care.

But the torch must be carried by everyone else: it must be carried through a desire to learn; it must be carried through a shift in perspective; it must be carried through acceptance.

“It all builds towards acceptance,” says Sandra.

“I want everyone to learn respect.

“They don’t need people to feel sorry for them, but they must be treated with empathy.”

Originally published in The Junction.