When police read out the details of Ann Marie Smith’s death at a press conference on May 15th, the words of South Australian Police’s Detective Superintendent, Des Bray, shed light on an existence that was far too tragic for the public to ignore.

With Ms Smith’s carer, Rosa Maione, the subject of a manslaughter investigation, attention now falls to her care provider, Integrity Care SA, and the system that failed her.

Western Australian disability advocate, Samantha Connor, has spent a lifetime dealing with care institutions and navigating disability services as a result of living with limb-girdle muscular dystrophy.

According to Ms Connor, the circumstances that resulted in Ann-Marie Smith’s death were tragic, but holding all of the appropriate parties responsible for these tragedies is notoriously difficult.

“In regards to Ann-Marie specifically, she was not just let down by the carer. It’s going to be interesting to see who is going to be charged in relation to the death, ” said Ms Connor.

“If you do something to somebody that causes them to die, then that’s very clear, but more needs to be done regarding people who fail to do things that they should be doing which then results in a person’s death.”

“My view is that we should have the same kind of mechanisms that we have with WorkSafe. If a tradesman falls off some faulty scaffolding and dies – then that business owner is going to go to jail for 5 years and get a very big fine.”

“We need to figure out what needs to be done to ensure that everyone is held accountable for the bad things that happen to disabled people. It might also stop some of these dodgy providers from doing dodgy things.”

Blissful Ignorance

The story of Ms Smith’s death was shocking to most, but for Samantha Connor and many other disability advocates, this tragic tale had a striking resemblance to many other instances where disabled people have suffered a horrendous fate.

In 2011, a 27-year-old woman with a range of severe disabilities by the name of Kyla Puhle was starved to death by her own parents who were acting as her family carers.

In circumstances that sound eerily similar to the plight of Ms Smith, Kyla Puhle’s parents also failed to provide her with basic care and kept her confined to a beanbag throughout the day and avoided outings.

At the time of her death, Kyla’s body only weighed 12 kilograms.

Unbelievably, Kyla’s mother, Angela Puhle, was not even jailed for the manslaughter of her daughter, with the judge declaring her ‘a loving and caring mother’ whose stress-coping mechanisms caused her to detach emotionally from her daughter’s situation.

While in 2007, Sharyn Ward was charged with murdering her seven-year-old autistic daughter, Shellay Ward, through a similar process of starvation and neglect.

“Shellay Ward wasn’t going to school and nobody noticed,” said Ms Connor.

“One of the most common themes in the tragedies that befall disabled people is that nobody cared enough to enquire.”

“There was another case last year where a gentleman with diabetes and a mental health condition moved on to the NDIS and off of his community care.”

“They closed his GP within weeks of him first attending, and he didn’t go to a new GP, therefore, he wasn’t getting his medication. He ended up dying, and this was called a natural death.”

“Nobody noticed all the newspapers building-up on his front porch while he sat inside dead because nobody cared. A lot of these issues just come down to people not giving a f**k.”

A History Devoid of Help

Despite living with limb-girdle muscular dystrophy and a form of autism, Samantha Connor’s interest in disability advocacy began at the age of 11 after witnessing the struggles of a close friend.

“Another kid who was a friend of mine was shot in the neck and became a quadriplegic which resulted in him being institutionalised, but it wasn’t the way his disability affected his life, it was the way he was treated.”

“His family encountered a number of financial issues from getting their son the appropriate care and that resulted in massive debt. His parents also spent years writing letters and making calls through all the appropriate channels but nothing was being done.”

Upon breaking down about her friend’s struggles while at work, a then 20-year-old Ms Connor was in complete shock when her boss – who was a member of the local parliament – made all of her friend’s issues go away with one phone call.

“That’s how I learned that people make rules and they are not always good rules,” said Ms Connor.

“Rules can be changed, but the only way to ensure that rules are appropriate is by listening to the people who these rules are going to affect the most.”

As an administrator for an NDIS grassroots discussion group with over 50,000 members, Ms Connor reports that the vast majority of members experience great difficulty when trying to navigate the NDIS.

She also believes that the levels of bureaucracy within the system make it easy for things to go unnoticed and it also makes it extremely difficult to hold anybody accountable when things go wrong.

The NDIS Quality and Safeguards Commission was set up at the beginning of last year to oversee and regulate care providers in the disability industry.

Figures released by the industry watchdog from between 1 July and 30 September last year revealed that the Commission had received  8,595 reports of serious incidents.

“There are three levels of safeguarding for people living with a disability, unfortunately, we continually see failures on all levels,” said Ms Connor.

“There’s developmental, which is the people who are supposed to be around you who will notice if you are hurt, missing, or if something is wrong. There’s Preventative, which are things like working with children cards and good policies and procedures that keep people safe.”

“And then there’s corrective safeguarding which gives people access to complaint mechanisms which should result in people receiving appropriate punishments.”

“The Safeguards Commission has a banned register, so they do have the power to ban and deregister providers, but they have not yet done that to Integrity Care despite what happened to Ann Marie Smith. There’s simply no accountability.”

Yesterday, Integrity Care SA was fined $12,600 dollars for failing to report Anne Marie Smith’s death.

Broader Issues

Both the carer, and to a lesser extent, the provider, have become the subject of blame in Ann Marie Smith’s case, but we as a society need to play a more proactive role in protecting vulnerable people like the elderly and those living with a disability.

Ms Smith’s neighbours revealed that they had not seen her in over a decade, but the daily sight of a carer’s car was enough to reassure them that everything was okay.

“Disabled people don’t have many friends,” said Ms Connor.

“When you’re segregated from people and put into isolated environments like many disabled people are, then you don’t have the same opportunity to make friends with people in the same way that other people do.”

“We are in the middle of a pandemic right now, but loneliness is a much bigger pandemic that has been destroying the lives of disabled people for as long as I can remember.”

Ms Connor recalled interviewing a woman whose sibling had been experiencing incredible hardship throughout their lifetime spent in institutions.

“The woman I interviewed sensed that her sister didn’t like her daily carer, so I told to follow them on an outing,” said Ms Connor.

Despite the horror that the disabled woman already had faced throughout her life, it was the sight of a carer pushing her sister’s wheelchair onto the beach to face the water and then turning her back on her, which broke her sister’s heart.

“The woman told me that her sister was just sitting there facing the sea while carer stood behind her playing on her phone and smoking for an hour. The woman said that the whole time her sister was trying to turn and look at the carer to get some attention.”

“This was a person who looked forward to their outing and was robbed of a human connection.”

While Ms Connor acknowledged a number of similarities between the issues facing the elderly and those living with a disability, she does see one clear distinction between both marginalized groups.

“To some degree, I think that disabled people are worse off than elderly people because, at the very least, people have a realisation that they will be an old person themselves,” said Ms Connor.

“People sympathise with that, and they also remind themselves that these people have done amazing things and lived rich lives, but it’s the opposite for disabled people.”

“Everyone knows we exist, but we just aren’t treated like humans.”

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