Four months after sharing their story, Bendigo family the McNeills are still no closer to securing government funding to help them keep their son.
Nine-year-old Alex requires constant care with a condition so challenging that no respite centre will take him. He has severe autism and a raft of other disorders including severe sensory processing disorder and obsessive compulsive disorder.
In October, Alex’s mother, Martina, took to the media to try to get numerous government departments to listen to the complex needs of her son.
Despite national interest and many phone calls since, no one was able to grant the family their wish: funding for an extension to build a separate wing for Alex to their house.
“Basically, we still have nothing that will help us with regular sleep and time for us to spend with Alex’s siblings,” Ms McNeill said.
“Alex still does not have an area he can play in where he won’t be affected by his sibling’s noise or where they will be safe from his once-again aggressive behaviour.
“We still have no further suggestions for addressing his behaviour with a view to integrating him into school or the community.”
WATCH: Alex at home in his bedroom. Video: A Better Life for Alex/Facebook
Alex’s National Disability Insurance Agency plan still remains under review and the family is waiting to hear whether a request for more support hours and the chance to get Alex into a program with Irabina Autism Services will be approved.
But what the family still needs is sleep, and a specially-designed place to keep Alex safe.
“We are at the point where I no longer have time to do anything in the house, with the other children, or on my business, due to Alex’s needs,” Ms McNeill said.
With all other options exhausted, the family has now come up with a new plan to fund at least the beginning of the extension themselves: the early release of Alex’s dad Rod’s superannuation.
But it won’t cover the full cost of an estimated $123,000 extension, nor will it leave the family with much when they can no longer work.
“We can’t retire,” Ms McNeill said.
“But it means we can get there quicker in providing a safe space for Alex.”
Glen Loddon Homes has signed on to carry out the extension, but before works can get started, the family needs help to get the property ready.
Part of the existing garage needs to come down and a concrete driveway needs to be removed.
Ms McNeill said the family would be grateful for any help they can get.
Anyone willing to help with the preliminary works can contact email@example.com and any businesses or individuals interested in helping with the extension can contact Glenn Wade at Glen Loddon Homes on 0409 962 376 or firstname.lastname@example.org