Without warning the service then cancelled Ms Cassin's carer allowance, despite the fact that James was still reliant on his mother for care and living at home. When Ms Cassin questioned why her payment had been cancelled, she was told she had to get a medical form signed from James's doctor confirming his diagnosis. "It’s just a battle a parent with a child with a disability doesn’t need. Having to continually get our GP to confirm a diagnosis that is never going to change is such a waste of time," Ms Cassin said. So she got a letter from her doctor confirming James "still had" Down Syndrome; but her frustration didn't end there. She was then asked to change her carer's payment to reflect she was the carer of an adult and not a child - which required her to speak with Centrelink about the care she gave James, and again, provide the doctor's note.

Then, she didn't hear back for over a month. After a number of phone calls back and forth with the service to check on the status of her claim, she was eventually told there had been an IT problem and a delay in reinstating her payment. Over three months later, Ms Cassin was eventually backpaid the amount she was owed - but she said she was ultimately left frustrated with her experience. Ms Cassin said it was the second time she been asked to confirm her son "still had" Down Syndrome since she first supplied Centrelink with his diagnosis when he was born. "If I remember rightly, Centerlink phoned me for a review when James was five or six," she said.

"We have enough on our plates dealing with allied health appointments, behavioural issues, extra time it takes in supporting our child with school work - et cetera. "There should be no need for a review or additional confirmation once a diagnosis is confirmed at birth." By telling her story, Ms Cassin said she hoped it would be something for Centrelink to consider in the future. Credit:Erin Jonasson Ms Cassin said her experience with the system highlighted the need for a permanent disability registery. "If I could speak to Michael Keenan I would actually beg him to implement a standard list of permanent disabilities like Down Syndrome that will never change or go away," she said.

"Once the initial diagnosis letter is supplied at birth this automatically puts a trigger in place that no further confirmation of diagnosis is required, no reviews are needed, claims for carer allowance, transfers from child to adult, disability pensions [and so on] just automatically happen so parents do not have to continually supply information that only proves nothing has changed since birth and the initial diagnosis." In response to Ms Cassin’s case, Department of Human Services general manager Hank Jongen said the service was striving to make the process as simple as possible, but there were restrictions due to the legislation. “We understand the important role of carers and do everything we can to support them,” he said. “When a carer allowance child turns 16, we are required under legislation to transition the carer onto a new payment category – ‘carer allowance caring for an adult 16-years and over’. “To do this, the carer needs to supply a new medical report about the child’s condition.