I am writing to you, as my local member of Parliament because I am angry. Actually, I'm more than just angry but I'll refrain from using the words that immediately come to mind.
Did you know that kids have strokes? Did you know that babies have strokes too? My son Maxwell had a massive stroke when he was 10 weeks old. He now has brain damage that affects two-thirds of his left hemisphere. He now has cerebral palsy, hemiplegia, sensory processing disorder, thrombocytopenia and acquired attentional deficits.
The current legislation pertaining to Carers Payment does not make any concessions for an infant with special needs. The 'Disability Care Load Assessment' (Child) assesses the functioning of a child not an infant. The stance taken by this Government is that 'all babies require full-time care'.
Mr Thomson, I want to ask you the following:
- do 'all babies' spend a week on life support, in a medically induced coma?
- do 'all babies' then spend a further 5 weeks in hospital, whilst the best Pediatric
Haematologists in Melbourne try to fix their blood?
- do 'all babies' require frequent blood tests?
- do 'all babies' need an intense schedule of Occupational Therapy, Physiotherapy and Neuro-
Developmental therapy, to achieve the tiniest of milestones?
- do 'all babies' spend hours doing therapy with their mother every single day?
I've fought a lot in the months following Max's stroke. I've fought for my son to receive
therapy, from a grossly under-resourced public health system. I was told that I would have to wait until my baby was 'more disabled before he would be entitled to Physiotherapy.
I had to fight for a place with the Early Childhood Intervention program. I was initially told to wait 1-2 years before he would get a place because older children have priority.
Now, I am fighting to change Section 197B of The Social Security Act, 1991, so parents of infants with special needs don't have to navigate this ridiculous system.
Quite frankly, Mr Thompson, I have better things to do than fight for legislative review but I'm angry. I have just lived through the most stressful year of my life and I've had to fight for every bit of help. Every day, I wake up and feel the pressure of being 100% responsible for my child's prognosis. Do you have any idea how that feels?
My son will grow up knowing that our Government offers more assistance to drug addicts, than babies who never had a chance to know what 'normal' is.
But he'll also grow up knowing that his mother did everything possible to help him reach his full potential.
Mr Thompson, my son is awesome but your system is sh*t.
Faith and Max
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