UNLIKE other friends their age, John and Cecily Donnelly won't get to retire.
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After 38 years of caring for their son Greg, who suffers from Down syndrome, the only thing that currently awaits the Donnellys after they become too frail to continue being responsible for Greg is uncertainty and anxiety about his future.
They are just two of the thousands of carers aged in their 70s and 80s in Canberra, according to Carers ACT.
The Donnellys, in their mid-70s, are among those who hope Prime Minister Julia Gillard's National Disability Insurance Scheme, a plan to inject an extra $6.5billion a year into disability care, may provide a better future for their child.
The spending would more than double disability support to $12.5 billion annually within seven years.
According to Labor power broker John Della Bosca it would be Ms Gillard's greatest legacy - bigger than the carbon tax, mining tax, raising superannuation contributions, the national school curriculum or hospital funding reform.
''It would be her crowning glory in history,'' Mr Della Bosca told the Sunday Canberra Times.
The former NSW MP, who heads the NDIS lobby campaign Every Australian Counts, noted the Productivity Commission's statement the scheme could be bolstered by skilled migrants.
Carers ACT chief executive Dee McGrath said Ms Gillard's support this week for pay rises for community sector workers would help fill the thousands of extra jobs the scheme would create.
At the moment administration workers often expected similar pay to skilled care staff.
''In Canberra we compete with the public service for staff,'' Ms McGrath said.
The Donnellys said three months ago they found Greg government-funded accommodation outside the family home but it fell through.
''His mother does his washing, ironing, cooking and cleaning and aged in her 70s she's waiting for the day she can put her feet up,'' Mr Donnelly said.
''It's a big job looking after him. Greg works and he needs his tax returns done and Centrelink paperwork kept in order.
''He has other family around but there's a limit to what they can do.''
Middle-aged carers Fiona and Greg Francis of Latham hoped the NDIS was delivered as scheduled.
Profoundly disabled daughter Amber, 12, is due to finish school in six years, a year before the entire scheme is supposed to be in place.
If nobody cared for her during the day her parents would have to give up work.