LIFE is an unending struggle for families with autistic children, a group of Knox parents told federal politicians last week. And their difficulties are compounded by the lack of support from governments at all levels.
Speaking about the pressure that envelopes them, one mother said parents with autistic children were constantly at breaking point.
The parents were guests at a forum with La Trobe federal MP Laura Smyth and the parliamentary secretary for disabilities Senator Jan McLucas at Coonara Community House last week to discuss the National Disability Insurance Scheme.
One parent, Cheryl Stephens of Rowville, a single mother of twins — one with autism and the other with attention deficit hyperactivity disorder — said she often felt "crippled" by the pressure she was under, particularly when it came to money. "All you feel is anxiety; it's constant," Ms Stephens said. "But you have to act fine for the kids."
The parents said they believed that the NDIS would be life-changing if properly implemented.
The Gillard government's proposed NDIS aims to create equal lifetime access to a pool of money for people with a disability.
Rowville resident Louise Anderson, who has a severely autistic and epileptic 13-year-old son, said parents with autistic children were constantly at breaking point.
"I describe it like a bucket of water: you throw everything it — your child, your extended family, work — then one more drip, and it tips over."
She said many families were isolated because their lives were dedicated to the child. "It's relentless, it's exhausting and it's over-whelming. We're too exhausted to do anything else."
Ms Anderson said it seemed support such as respite care was only available in a crisis. "Why do we have to get to crisis to get help?"
Ms Stephens said the NDIS would enable her and her twin daughters to feel "properly supported and energised".
"It's just knowing that help will be there in the future, because it's not going to get any easier. When they are teenagers, we're going to need more support from agencies," she said.
Parents at the forum questioned the lack of programs that offered before and after school care or holiday programs for autistic children in high school, as well as a lack of funding for peer support groups.
Ms Smyth told the parents it was important for politicians to hear first-hand experiences of local people with disability, their families and carers.