Minister for Disability Reform Jenny Macklin listened to Maureen Slapp's tale at the forum. Picture: MELANIE RUSSELL
Maureen Slapp cared for her husband Bill from the time he became a quadriplegic until his death last month, 33 years later.
She quickly grew skilled in how to properly place Bill's limbs so he wouldn't become uncomfortable in the night - even small details could result in a serious complication.
"Every disability that is complex has its own group of skills," Mrs Slapp said.
"If you don't fold the plastic edge [of a bed sheet] right, it creates an area where it can break down the skin by morning, and it may never recover."
Mrs Slapp shared her experiences with Minister for Disability Reform Jenny Macklin at Dapto yesterday, as part of a community forum on the government's National Disability Insurance Scheme.
Mrs Slapp told the minister the government needed to invest in bettering the skills of carers - including TAFE-trained nurses who, she said, had arrived to care for her husband with limited knowledge of his needs.
"We found that the level of skill was so basic," said Mrs Slapp, of Woonona.
"You've got to develop better basic skills before they start [the Disability Insurance Scheme].
Yesterday's meeting, hosted by area MPs Sharon Bird and Stephen Jones at Dapto Ribbonwood Centre, drew a packed audience of carers, parents and service providers, offering feedback and front-line stories for the minister to consider as the scheme takes shape.
The minister told the audience she hoped to take legislation to Parliament by year's end, and offered details of an early rollout taking place in Newcastle, where workers were taking stock of existing services.
From the audience, former Greenacres CEO Neil Preston told the minister the Productivity Commission had its recommendations about the scheme "95 per cent right", but suggested people with a disability should not move from the care sector to the aged-care sector once they turned 65.
"You shouldn't go into the age system unless it's got the same quality of care, and now it doesn't have the same quality of care," he said, to applause from the audience.
The minister said workforce training was among the reasons the scheme would take time to roll out across Australia.
She welcomed the feedback from the Illawarra, one of many sites being canvassed by the government nationally.
"What was so impressive about the people that came along today was so many of them were extremely well-informed," she told the Mercury.