Monday, August 13, 2012
A shiver of fear passes through Rebecca Paton when she thinks about her young daughter growing up.
It's not because she's worried about underage drinking or teenage tantrums.
Her daughter Sarah is six years old and requires high-level care.
She's unable to communicate and needs someone to feed her, shower her and change her nappy.
The likelihood is she'll never be able to do any of these things herself.
But when she turns 18, most of the services available to help with her care will end.
"When I look to the future, I'm shit scared of her turning 18," Rebecca says.
The former science teacher and her husband Tim found out Sarah had a rare condition called pallister killian syndrome when she was eight months old.
There are only about a dozen other diagnosed cases in Australia.
Sarah goes to Ballarat Specialist School where she receives various therapies and is involved in stimulation classes such as music and cooking.
"At the moment... she does amazing things every day and when she turns 18, that's going to stop even though developmentally she'll be nowhere near an 18-year-old."
The family has access to occasional respite, including three hours a week provided by Ballarat City Council.
But Rebecca says when Sarah turns 18, most of this will cease and there are very few programs that cater for adults with Sarah's kind of disability.
Sarah's ongoing care will fall on the family.
But one of Rebecca's other worries is not being in a position to provide that care.
"I guess that's coupled with the fear that if that was to happen in the current situation there is no real option for that - I can't think of any government facility or any private facility that could adequately care for Sarah to a point that I would feel happy," she says.
"It's me and my husband and maybe Hannah one day, it's sort of all on us."
It's hard to say exactly how a National Disability Insurance Scheme will affect the Paton family's day-to-day life.
Rebecca, a science teacher, hopes it will improve funding and wait times for equipment and increase respite and care services, enabling her to go back to work.
She says politicians need to consider how they would want the system to run if they were disabled or had a family member with a disability.
"No one knows when they might become disabled.
"Everybody is a chromosome, a trip, a stroke, a car accident [away], even an illness can put you into that category and you can suddenly find yourself or a very dear loved one with a disability."
The Victorian Government has committed about $40 million to host the scheme trial next year in the Barwon region, which includes the Colac-Otway and Surf Coast shires.
The announcement was made after negotiations with the Federal Government came under intense public pressure.
While Rebecca is pleased that the Baillieu Government has now set aside money for the trial, she says she wished it had avoided political point-scoring.
"He put us through unnecessary stress, just because of politics.
"I'm relieved; it felt like we'd been successful and that families with disabilities were heard and we actually mattered for a change."