Disability carers break culture of silence

Carers have spoken out about the needs of children with a disability at the Mad as Hell Disability Rocks Concert, held at the Seymour Centre in Chippendale.

Sunday’s concert served as a forum for discussing the needs of the disabled community and their carers with Labor’s Parliamentary Secretary for Disabilities, Bill Shorten, and his Opposition counterpart, Senator Mitch Fifield making policy announcements to the sell-out crowd.

Parents and carers of disabled children said the announcements were a step in the right direction but that the issue had been ignored by the media and parliament for too long.

Former Prime Minister Kevin Rudd initiated an investigation by the productivity commission last year to create a new lifetime care and support system for people with disabilities, with a National Disability Insurance Scheme (NDIS) one of the options to be investigated.

Founder of the Carers Alliance Party, Mary Lou Carter said the community was starting to realise there were startling deficiencies in the way services to the disabled community were assessed and funded and this would hopefully lead to support for a restructure.

“One of the problem is the people that are championing these cases are the carers and families themselves,” she said “who in most cases are the least equipped to do so in terms of time and resources.”

“Many politicians say they go into politics to help people,” she said.

“Well there are millions of Australians affected by disability who need that help. [And a] National Disability Insurance Scheme will certainly help them.”

The Carers Party have responded to what they say is chronic underfunding across rehabilitation, aged care, mental health and disability services by running almost a dozen candidates in the upcoming election, with most also caring for a disabled child.

NSW Senate candidate, Maree Buckwalter, who cares for her disabled child, Alex, said people with disabilities and carer-families need their voices to be heard in parliament if real change is to occur. She told City News she had to lobby extensively for day programme funding for her son’s mobility programme.

“I  petitioned the ombudsman and the minister,” she said “and this was for something he needed, not wanted, but needed.”

“We need a NDIS. And we need it to be set up properly.”

Expressions of interest in the disability inquiry have reached a record level with 1850 enquiries, 1000 more than the previous record of 857 expressions of interest into the inquiry into a paid parental leave scheme.

Recently elected 21-year-old South Australian MP, Kelly Vincent who represents the Dignity for Disability Party and who has cerebral palsy said not only the funding model but the attitudes around disabilities in relation to community support and self-determination needed to change.

“Disability services should not be a privilege in any way, they are a right,” she said.

“I did a radio interview the other day and somebody rang up and asked why they should have to pay for someone’s wheelchair.”

“I said to them, I’m happy to stop paying my taxes and my Medicare levy, but when you need to go to the doctor, don’t you come calling to me.”

“It’s really about getting disability on an equal playing field in terms of the way it is commissioned and considered.”

“There [also] has to be the recognition that people with a disability have the power to define themselves, they are the experts on their own situation.”

Co-founders of the Mad as Hell Campaign, Fiona Porter and Sue O’Reilly, both mothers of sons with disabilities, welcomed the growing recognition from politicians from all parties that there were some three million Australians suffering under the current fragmented and crisis-driven disability service system.

“While we accept that neither of the major parties can commit to the introduction of a National Disability Insurance Scheme before receiving the Productivity Commission’s report next July, it is essential that disability services be elevated from a junior parliamentary secretaryship into a stand-alone ministry,” they said.