My sister Allison is dying. She is dying at the age of 40 in an aged care home, because the Queensland Government’s disability system is broken.

I always thought that we lived in a country where, no matter what went wrong – if I lost my health, house or job – there would always be a basic level of support; a net to catch me if I fell. I assumed that the systems we have in place, such as health care and disability services, were amongst the greatest successes of a modern democracy.

I was wrong.

My sister Allison is dying, and there is nothing I can do about it but write this letter.

Allison is disabled. She is 40 years old, and she has lived in an aged care home for the last two years. In that time, her neurologist has reported a deterioration in her condition which has nothing to do with the brain damage she suffered as a child. He says that it is at least in part because of the lack of stimulation in her environment.

I have watched my sister gradually lose the ability to move her hands, lift her head, stand and walk to the bathroom.

We have made noise. Youngcare, the national organisation working to get young people out of nursing homes, has advocated with us to the Queensland department of disability services. Our friends and family have written letters to the Minister. Madonna King wrote an editorial about Allison in the Courier Mail, which received over 200 email responses from people around the state, voicing their support and sharing their own stories of loved ones in situations like Allison’s.

My mother cared for Allison as long as she could. She is a war widow; my father was a veteran of the Vietnam and Malaysia conflicts who died of heart disease related to his service more than ten years ago. My family works in public service – teaching, nursing, caring professions. If we could look after Allison, then we would. But her needs require professional support.

So, naively, ignorantly, we looked to the system, the safety net, the social services which we have faithfully paid our taxes towards, the great success of modern democracy.

The system failed. There were literally no places for Allison in disability care. She went into aged care as they waited for someone to die in a disability home and free up a space.

Three months ago we heard that there might be an opening for Allison in a disability home equipped to care for her. But she is still in her aged care home because there are not enough carers at the centre to look after her.

Whilst we have waited, winter has approached, and Allison has contracted pneumonia twice in two weeks because she is so immobile – and that is because she is left in bed or in her chair, with no stimulation.

It is not the aged care workers’ fault. They do their best. But my sister needs to be in a disability home, where there are activities, stimulation. She needs to be somewhere where the focus is on life, and not the other thing.

I am afraid now that, even if the department does find the funding for the carers to help Allison live in a disability home, it will be too late.

What makes a life worth saving? Some might think that it is time to let her die. I feel certain that this is what the government is waiting for. I really don’t think they have KPIs for keeping young people alive in aged care. In fact, one fewer is one fewer in aged care.

I have thought about this for a long time and here is my answer. Allison is loved. We can see her in her eyes, and when she tries to talk and say “mum.” We read poetry and stories to her, some of which she wrote herself many years ago. She runs her fingers across the pages and we know she is reading the words with us.

What makes a life worth saving? Love. It is more than many able-bodies people could claim – that they are loved and loved well.

Please, Premier Newman. Don’t let my sister live, or die, like this.

Since I wrote this, I have had lovely people ask how they might help. There are a few things I can think of:

  • write to the Minister for Disability Services in Qld, Tracy Davis MP,
  • write to the Qld Premier, Campbell Newman,
  • write to your own local member or state Minister, deploring the fact that there are more than 7,000 young people in aged care homes around Australia
  • consider supporting Youngcare Australia, which is a not-for-profit organisation committed to helping get young people out of aged care homes and into age-appropriate disability care

Thank you :-).