run the hospitals? They can't look after a building insulation scheme or the schools buildings thing. They can't look after our daughter."
The person asking the question is an 80yr old acquaintance. He and his wife still care for their profoundly physically and mentally disabled daughter at home. There is nowhere else for Kaye to go. They get a little respite now and then. When they do get respite they have learned, the hard way, that they need to be at least out of the state and preferably out of the country or their daughter can be returned early because people do not understand her special needs. Kaye is liable to choke if fed incorrectly and, despite their age, her parents are seen as able to cope.
Over the years they have amassed the skills and the physical equipment to care for her. Eleven years ago when her father injured his shoulder shifting her they were finally given a little assistance and their daughter was given a place in a day-care programme four days a week. It gives them a chance to do essentials without having to constantly watch her.
I have known them for twenty-seven years, from the time Kaye left school. They consider themselves fortunate because she attended a special school and was able to stay there until she was twenty. After that there was nothing for her.
They are wonderful parents. Kaye gets included in everything. She is kept spotlessly neat and clean but the effort is beginning to show. They know they cannot keep it up much longer. Still the authorities say there is nowhere for her. The waiting lists are years long. They have told her parents that her brother may need to take responsibility for her. He lives elsewhere and has a family of his own. Caring for his sister would mean giving up his job. The authorities have just shrugged and said, "If that is what it takes."
The Prime Minister has grandiose plans for taking over the hospital system from the states - in return for having control of more of the GST revenue. In principle it sounds a good thing - one service right across the country, all nicely streamlined. The reality is probably something rather different - a top heavy administrative nightmare with money eased out of the hospital system for any other politically popular agenda that will see the government of the day re-elected.
There is no political mileage to be made out of caring for the severely and profoundly disabled. It is not something any government really wants to spend money on. They were happy to close the institutions which once cared for some of these people. Yes, it is true that they were not good places either - but they were more open to public scrutiny in their latter years. In-community housing all too often means that families will try to continue to care for their children rather than risk the care (or lack of it) provided in such places away from public scrutiny.
If the federal government does take over the hospital system then there will be even less resources for people like Kaye and her family. They will be a little further away from public scrutiny. Canberra is a little further away from public scrutiny.