A respite centre in Queanbeyan that supports young people with a terminal illness and their carers is waiting on the State and Federal governments to come to the table with the $1.5 million in promised funding needed to build the centre.
During last year’s Federal Government election and the recent Eden-Monaro by-election, politicians committed the required funds to build the purpose-built six-bedroom respite care facility in Queanbeyan.
Member for Monaro and NSW Deputy Premier John Barilaro promised half of the required funds ($750,000), while the newly elected member for Eden-Monaro, Kristy McBain, also reiterated her commitment to the project first made by former member Mike Kelly.
A board of directors from within the Queanbeyan community, led by chair Paul Walshe, has lobbied for the past three years for the facility, which has plans drawn. The development application has also been presented to the Queanbeyan-Palerang Regional Council.
Mr Walshe told Region Media that following the pre-election commitments, politicians had fallen silent and the last 12 months has been a frustrating process of letters and emails being ignored or, at best, having generic responses.
“Both federal and state governments have responsibilities here either by having carers under their portfolio, or having acknowledged the issue through the Royal Commission into Aged Care, where one of the recommendations has been to ask how we get young people out of respite care facilities,” Mr Walshe said.
“I can’t get the relevant ministers to the table or get them to answer my emails. The NSW Health Minister is very interested but others are just giving me the usual bureaucratic response.
“We just need to have the discussion to say that this is really relevant to our community because these young people are slipping through the cracks as most of them are not covered by the NDIS.
“The last 12 months have been very frustrating,” he said.
Mr Walshe said he has been in his own form of ‘campaign mode’ by writing to as many potential stakeholders as possible since the beginning of last year.
A petition for the respite care facility has been signed by more than 2000 people in the Queanbeyan and Canberra region, including the majority of Queanbeyan’s doctors.
Southern NSW Area Health had also told Mr Walshe a respite centre for younger people is desperately needed.
The Respite Care for Queanbeyan board of directors includes Yvonne Cuschieri, who founded the Eden-Monaro Cancer Support Group that first sent teenagers with cancer to a Canteen camp.
Now known as Rise Above, the group has supported more than 30,000 cancer patients and their families over the past three decades.
The journey for Yvonne and her husband Joe Cuschieri became more personal when they cared for their son Steven who developed a brain tumour in 2013. Subsequent surgery left him paralysed down his right-hand side.
Yvonne and Joe cared for their son for as long as they could but they struggled to get him in and out of bed over time.
They made the agonising decision to put their 53-year-old son into the Queanbeyan Nursing Home where he shared a room with two men, aged 92 and 88.
An unfortunate chain of events saw Steven fall while in respite care at the nursing home. He died from a brain haemorrhage within hours.
Mr Walshe said a 30-year lease has been signed for the site of the respite care centre on a 1500 square-metre on Ross Road in Queanbeyan where two basketball courts have mostly stood empty.
Plans include an outdoor area with a park behind the facility.
The facility will support carers and provide short-term professional residential care for people aged 18 to 59 years suffering from a terminal or chronic illness.
Mr Walshe and secretary of the board of directors Hugh Percy said the challenge now is to get confirmation of the financial model so they can develop their own ongoing funding model that they estimate will cost
“This centre would be the first of its kind in Australia. There’s nothing like this anywhere, apart from the facilities in Canberra for children with autism set up by the Ricky Stuart Foundation,” Mr Walshe said.
“Too many young people are going into nursing homes and aged care facilities – it’s criminal.”
He said the costing model for the respite centre will also take the pressure off the local health system.
“The cost of a bed in a hospital is $1400 a night, while we estimate the user-cost per night at the respite centre to be $500-600 during the week and no more than $800 on weekends.
“It’s time to think outside the square.”
Further details about the project can be found on the Respite Care for Queanbeyan website.