National Disability Insurance Scheme – Frank and Jacob’s Story

Mr CLARE (Blaxland) (10:06): Today I want to talk about Frank and Jacob. Frank is Jacob’s dad. He’s the father of three boys, and Jacob is the youngest. He’s 10 years old and he has Angelman syndrome. Angelman syndrome is a genetic disorder. It’s caused by the partial deletion of chromosome 15, and kids with Angelman syndrome need constant care. They can’t talk or they have minimal speech. They often can’t walk. They have problems staying asleep. Jacob will wake up four times during the night. They have constant seizures, and there’s no cure, not yet. So looking after a little boy like Jacob is very hard, and it got harder two years ago when Jacob’s mum, Joanne, died from a brain tumour. Jacob lost his mum; Frank lost the love of his life and his partner in looking after their special little boy. It got harder again this year when Jacob’s NDIS funding got cut by about 23 per cent. Frank rang my office in a panic. We rang the NDIS, we got a review done and we got the funding restored. That was good news. But it happened again last month. This time the funding for Jacob got cut by 50 per cent. Frank rang the office again. We rang the NDIS. We got some funding restored, but not all of it. Frank’s now getting about 30 per cent less funding looking after Jacob than he was this time last year, and looking after Jacob is getting harder, not easier.

As he gets older and bigger and stronger, he needs more care, not less. Frank needs more help, not less. He’s raising three boys and doing two jobs. He’s got a lawn mowing business and a pest control business. These cuts mean that he can’t get carer on the weekend to give him some time off to look after his other two little boys, and they need their dad as well. When Frank asked for the funding back, someone at the NDIS told him to quit his jobs and go on the carer pension. Really? Is that what we are telling people now? Apart from the fact that you can’t live in Sydney and pay a mortgage and look after three kids on a carer pension, this is what the NDIS was about: looking after boys like Jacob and their dad and their family. And we’re not doing that at the moment. We’re not looking after them properly. So I urge the minister, I urge the government, please review Jacob’s case again and please restore the cuts. We’ve seen so much waste in the last few weeks again of taxpayers’ money by this government. Surely there’s a bit of extra money to make sure that little boys like Jacob are properly looked after.