Independent Assessments
Submission 357
Dear Mr Shorten,
thank you for the opportunity to comment on my experience with an NDIS family.
I am a carer in emergencies for my friend whose 18 year old son has been diagnosed with “Pathological Demand Avoidance” autism, basically means his life is limited and he is in a palliative care stage. He is non verbal and has regressed to a two year old. He rarely sleeps, recently went three days without sleep, followed by just cat naps.
his Father works rotating day and night shifts, which confuses the son who has now started to attack him; they can no longer be in the same room.
The 19-year-old daughter attends University when she can, sometimes having to miss lectures to help her mother. The daughter deserves her own life, not tied to her brother as a carer and back up for her parents. She never complains.
My friend, the mother and main carer, dedicates her day and night to keeping her family safe, watching over her son. They live behind locked doors. The mother is sleep deprived.
We were all hopeful that NDIS would offer some support and at least improve their life but it has come as a disappointment. The amount of money received has allowed a carer, chosen & trained by the mother, to come in a few times a week to help, but when the money runs out, that’s it until she reapplies. Way underfunded.
the Situation has now become URGENT, with my friend needing surgery to remove a lump, possibly cancerous. This should have happened six months ago as advised by her doctor.
the Problem is - who can care for the son 24 hours a day whilst she is in hospital and then recovering?
dis are now saying ‘oh sorry you’ve been under funded we must have missed you.’ This has been going on for years.
this Is a struggling family needing urgent help. The Mother needs an Urgent operation. The Daughter Needs A Life Of Her Own Not As A Carer For Her Brother And Mum’s Back Up.
the Father ostracized By His Son Just Trying To Keep A Job To Support his Family. Placing the son into Care Is not a solution as he Would Not Cope With Strangers And Injure himself; as experienced In a Hospital situation. More support for The Family At Home Is needed In order to keep their son and themselves safe.
Thank You For Your Time.
i’Ve just touched On A Few Things Here.