The Bendigo Advertiser story 'Nowhere to sleep' about angry mother 'Christine' and the fears for her disabled son who was forced to sleep on a police station floor due to a lack of emergency accommodation hit a nerve with the O'Sullivan family in Eaglehawk.
Carolyn and Michael O'Sullivan have an adult disabled daughter with serious behavioural issues.
They know all about the lack of services and have campaigned for years for change.
Their efforts fall on deaf ears, but still they try.
The Bendigo Advertiser publishes Carolyn O'Sullivan's heartfelt letter in response to Christine's story to highlight the plight faced by all families living with adult disabled children...
I empathise with Christine and her plight.
Our family have been in a similar situation for many years.
Many do not believe that there is nowhere for our adult, disabled children to go when they are aggressive or impossible to manage.
Unfortunately, it is true.
In fact, there is nowhere to go, just so that our family can have a break. Yes, there is respite in this region, suitable to some. After training staff and setting up four different out of home programs (all of which fell through due to staff leaving, lack of support etc) none lasted longer than six months.
Our 19-year-old daughter is loved, well cared for, and part of a wonderful family, however, she is aggressive, self abuse, non-verbal, doubly incontinent and prone to some of the most challenging behaviours possible.
She has had all the therapies known to man, but has a regressive form of autism, so she is getting worse, despite all of our efforts to help her.
I gave up my nursing career to care for her 24/7 when she was 13.
At this time we were forced to withdraw her from special school due to her severe and challenging behaviour, as well as the school's inability to appropriately prevent or respond to this behaviour.
Since then, we have had many days and nights like Christine's. But, when we have contacted DHS or service providers, crying out for help (which is not easy to do, believe me), we have been told that we should ask my parents to care for her. That is the first option. My parents are elderly!
A year ago, after cleaning faeces off the floor for the 14th time in one day, we called DHS, in tears and decided to relinquish care of our daughter.
This was the hardest day of my life.
Three days later, DHS called back after several meetings about our plight. We were told, sorry, there is nowhere to relinquish her. Nowhere from Bendigo to Melbourne. It is so devastating to have to be in this position, but so much worse, when you are told that there is nothing anyone can do.
Other options are then offered, such as a derelict house, a motel room, and a caravan park. None, obviously, were close to suitable.
Our child ended up staying put, at home, and we were just forced to just cope.
Our daughter has been on the list for supported accommodation for three and a half years (she is a high priority). I wonder how bad it really has to get? There cannot really be a higher priority than her.
We are suffering.
Our sons have no semblance of a normal life, though we hide this from them as best we can.
Financially, it has destroyed us. Living on one part-time wage, due to her high level of care is crippling. And forget about taking a holiday. Who would look after her now?
Not many people believe us, they really cannot fathom that we are telling the truth. That hurts too, in a whole different way.
I do not feel that the current supported accommodation model is working, obviously, and I am not alone. Many are being let down by this system.
Not every disabled individual can fit the mould of a home in the suburbs with disability workers looking after them. Those who do, are very lucky. It is too expensive to house individuals such as our daughter who requires 2:1 care. She would cost upwards of $450,000 per year in this type of care ($86 per hour). It is no wonder, therefore, that she is still on the waiting list.
There are thousands like her in this state.
We need purpose built facilities, like villages, or nursing homes (but not for the elderly) with nursing staff, disability workers, even doctors/specialist available on call.
Do not confuse 'facilities' with 'institutions' as I am not about promoting the return of non-inclusive-type accommodation.
I am referring to the need for places that can suit the needs of a wide variety of disabled individuals, including those with highly complex needs, such as my daughter, and Christine's son.
Importantly, we need staff who are highly trained, not just in the field of disability and behavioural intervention, but in medical/nursing practice.
I am a Division 1 Nurse, and find it frustrating trying to explain the medication she is on, to DHS and to people caring for her, who have no idea what it's for, the side effects to look for, and so forth. This alone can be a nightmare for us.
Unless we look at the failing model and try to do something about it, this country is facing a problem that is not going away.
Parents and carers are burned out, and tired of being paid a measly $124 per fortnight (carer's allowance) to care for our children, night and day.
When we are beyond caring for our loved ones, we do not want to call the police, they have enough to do, and our children are terrified in this situation, which causes grief for everyone involved.
Being shackled in the back of a divvy van is no way to care for people who are disabled, who rely on the right kind of approach to avoid/reduce escalation of untoward behaviour.
This problem is not going away, so we need a taskforce to deal with it.
Safe, supportive, supported accommodation is the right of every disabled individual, and it is about time the community recognised what is going on in this sector and began to come up with a model that works.
When large supported accommodation facilities were closed in the 1990s I was working with the Homeless People's program.
Only around 25 per cent of these people were rehomed using this model (small houses in suburbs). The rest were left to their own devices. Most ended up on the streets. To some of these people, we closed the only home they had ever known.
I plead with this community and to those in the position to make change... open your eyes. See what is really going on without the desire to gain votes or favour with your local member of parliament, councillor, or state leader.
Do something because it is ethically the right thing to do.