Gillard hears the truth

1.50pm Feb 10: There may be a gag order on ministers talking to editors but there was no suppressing the truth as parents spoke with the Prime Minister Julia Gillard this morning in Croydon about the harsh realities of caring for their disabled children and their fears for the future.

Ms Gillard visited the Croydon-based disability service organisation FRANS this morning to speak about her government’s intention to launch a national Disability Insurance Scheme by mid 2013 and to hear the views of parents first-hand.

“We are interested in your feedback,” Ms Gillard told the dozen parents and board members from FRANS. “We want to establish a Commonwealth agency in cooperation with the state governments that link with local services (such as FRANS), to provide complete services.”

Currently, parents of disabled children must endure multiple assessments for multiple agencies, which they say is tiring, demoralising and ineffective. There is no national standardised assessment for people with a disability and Ms Gillard says this must be addressed.

“We are aware that parents and carers are on the hunt for services, and doing it themselves and that it drives people nuts,” she candidly admitted. “There needs to be a huge shift from where we are now and my purpose (in being at FRANS) is to listen to people’s experiences.”

The federal government is promising to establish a Disability Insurance Scheme, which the opposition leader, Tony Abbott has said is only on his wish list.

Parents spoke about the lack of social housing, insufficient respite care and access to work for disabled people who want to be a part of the community.The mother of an 18 year-old intellectually disabled son said that the strength of FRANS was that it offered practical solutions.

“Most of the children are capable of achieving, but it takes 50 to 100 times longer to achieve their goals, such as public transport, cooking and cleaning. What would happen if we weren’t here (as parents?). That’s the number one fear of every parent of a disabled child. Who would care for them?We want our son to part of a functioning community and that takes money for organisations such as FRANS. Not money for bureaucrats.”

24 year-old Tara Elliffe has Down’s Syndrome, holds a part-time job in Burwood and enjoys a social life with friends. Her mother attributes Tara’s development to FRANS but also says that there is a lack of social housing.

“There is so much high rise development happening. Why can’t one or two units be set aside by the government for social housing. There’s a need for supported housing. It’s very important,” she said.

Minister for Families and Community Services, Jenny Macklin said that up to 80,000 new houses or units would be built for social housing by mid 2012.

“There is a massive demand,” Ms Macklin said.

The biggest impact came from mother of two young autistic children aged nine and seven, Sandra Casinader who broke down in tears as she described to the prime minister what her life was like.

“I am only at the beginning of this journey and it’s such a tortuous journey to access anything – even nappies for a size 10 boy. I had to give up my career (as a banker) and this could happen to anyone. I am now ‘in this sector’,” Sandra said.

Others called for the reform that was promised 40 years ago. “I am hopeful that the Gillard Government will leave a legacy that is the Disability Insurance Scheme and not leave us in this ad hoc, soul sapping situation. Please give us a beacon.”