26 Mar It’s home, not a “housing solution”
As parents we want what is best for our kids. We do the best we can with what we know. When we know better, we do better…. or something like that.
My daughter moved out of home last year. At 18.
It terrified me, and her, and her support team.
I wanted it. Her little sister needed it. Most importantly: Siobhan craved it and made it happen (and yes, she has pre-approved this).
From the time she was about 4 years old, I knew deep down, in places that parents do not like to admit, that Siobhan’s reality if something happened to me was, most likely, an aged care facility. Take a moment, and let that sink in. From the age of four! Aged care facility.
Back then, I believe the youngest person living in aged care was nine. Siobhan’s physical disability, communication difficulties, wheelchair, communication device, and personal care including tube feeding had made getting support practically impossible. All the group homes I was aware of at that point in time weren’t wheelchair accessible.
This was all I knew of “the system” and if it had to pick up the pieces to support Siobhan – an aged care facility was the only logical conclusion. With over 6000 young people currently living in aged care, and 50 young people still entering aged care each year, the numbers support my conclusion.
Siobhan’s home is a private rental. She has been there 6 months and is thriving. She looks healthier than she ever has, is happy and has matured in ways that were unexpected and that I am truly proud of. She is supported by her own team of staff who genuinely put her needs front and centre. All the time.
NDIS. Choice and control. These are the systems and mantras that have made Siobhan’s goal a reality. That is why stories like this one from ABC reporter Jane Norman (25/03/2019) infuriate me as they dictate the narrative for the wider community. “We are doing good – we are getting young people out of aged care facilities” and, while we are patting ourselves on the back, we are moving people into equally problematic living situations that they do not want or choose – moving back home with their parents, or into supported living units or group homes.
The article talks about some of the problems young people face living in aged care facilities
“days were dictated by a schedule, her access to vital rehabilitation restricted and at one point
staff took away the board she needed to communicate”.
This is not unique to aged care facilities. It is part of the reason for the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Off the top of my head I know 4 people who would say EXACTLY the same things about the Disability Group Home that they are living in. When you need support and do not have control over your staff, or they are not suitably trained, it doesn’t matter where you live.
It has just been announced that the Government is committed to reducing the number of young people living in aged care. That is fantastic news for those who want to move out. But let’s stop patting ourselves on the back, get serious, and start talking about real, individual, solutions.
Having a home is a basic human right. There is not a one-size fits all model, and there is not a hierarchy of homes – group homes (shared accommodation), supported living units, (serviced apartments), remaining with parents (millennials?) may all be a desired outcome for different people. We need to add other typical home experiences to this list: Living alone, living with a lover, living with your partner and family – all with NDIS-funded Reasonable and Necessary supports in place.
The NDIS is all about helping people with disability to live their best lives. Home – not housing, home – is a huge part of that. If we get that right, the whole family unit can thrive.
We know better. Let’s make sure we do better.
….. Caroline Daley