"As the parent of a child with a disability, Ann Marie Smith's death keeps me up at night."

On Friday May 15 2020, South Australian Police declared that the “disgusting and degrading circumstances” that Kensington Park resident Ann Marie Smith died in were part of a major crime investigation.

Ann Marie was 54 years old, had cerebral palsy and lived alone, with the assistance of a paid support worker. She lived in a nice house, in a nice neighbourhood.

But Detective Superintendent Des Bray shared that Ann Marie had been “living her days and sleeping at night in the same woven cane chair in a lounge room for over a year with extremely poor personal hygiene”.

Watch: Vanessa Cranfield on parenting a child with a disability. Post continues below.

There was no fridge in her home, no nutritional food, and the cane chair had become her toilet.

A now-terminated employee of Integrity Care SA had been Ann Marie’s support worker.

On April 5 2020 the support worker, upon finding Ann Marie semi-conscious, called an ambulance and she was admitted to the Royal Adelaide Hospital.

Doctors conducted major surgery on her severe pressure sores and infected tissue, but Ann Marie died a day later of profound septic shock, multiple organ failure and malnutrition.

As more news was released across the weekend of her devastating death, my feed became filled with the picture of a younger Ann Marie.

She is seated on a cane chair and the figure of a woman is visible next to her. Perhaps it is her mother. I am struck by how evidently loved she is.

The delicate, gold necklace with a heart-shaped pendant, the pretty clip in her beautifully-curled hair, the relaxed pose of her hands in her lap as she gazes toward someone off-camera.

She was loved.

She was cared for.

She was part of a family.

This image of family, of love, and of care contrasts so starkly with that of a woman left to suffer unimaginable abuse and neglect at the hands of those paid to care for her.

And as the parent of a young son with a disability who is loved, who is valued and who will require paid support across his life to assist with daily tasks, these are images that keep me awake at night.

There are significant changes that need to happen at an organisational, state, and federal level to ensure that those who are alone, and those who require the assistance of paid support are not left to die without our knowledge.

But there are also changes that we can each make at an individual level. We all have the power to ensure that not another person in our community will suffer as Ann Marie did.

Listen to The Quicky, Mamamia's daily news podcast. Post continues below. 

The power for us all, together, to face and dismantle our segregation, our ableism, our othering. To know, to value, and to include all in our community, not because we are paid to, but because we believe that it is our diversity that makes us strong, and interesting, and brave.

Do you want to know what keeps the parents of children with a disability awake at night?

This.

Ann Marie Smith was left to die in a cane chair for a year.

Ann Marie Smith had cerebral palsy and a paid support worker who left her all day, every day, to slowly decay inside her home.

Ann Marie Smith died of severe septic shock, multiple organ failure and malnutrition.

Ann Marie Smith was 54 years old and lived less than 10 minutes from where I live.

If you want to know why we advocate so hard to have our children included at school, in sport, at parties, in art, everywhere in the community, this is why.

Because when we are gone, when siblings move away, who will care about our children?

Their community.

Their neighbours, the local people at the supermarket, at the coffee shop, in their sports club, at their art class.

The people who will notice when they haven’t been in for a week.

Or a month.

The people who care, not because they are paid to care, but because they are friends, allies.

For too long, children and adults with disability have been segregated into 'special' schools, 'special' homes.

Isolated and alone.

Without the community they deserve.

The community that is only made whole through the inclusion of all.

Because when the bright light of accountability is not shining on the people paid to support them, this is what can happen.

I wish this was an isolated incident.

It is not.

And this is what keeps us awake at night.

We say that it takes a village to raise a child.

Let’s ensure that the village raises EVERY child.

Rest In Peace Ann Marie.

You can read more from Michaela Banks at her blog, Give The Boy A Chance, right here.