I have identical twin boys. They are five years old, have a rare genetic condition, and can’t walk or talk. They are fully dependent on someone for every moment of their lives: eating, nappy changing, brushing their teeth, getting dressed…
My boys need so much special-needs equipment: bath chairs, feeding chairs (with head supports), (cut-out) play tables, standing frames, walkers.. and soon wheelchairs. Each item costs thousands of dollars. They also need huge amounts of therapy and do physio, OT, speech and hydrotherapy every week.
That is what early intervention is all about. We tried to send them to a special-needs school but it was so dreadfully underfunded, lacking the essential resources to help them reach their potential, that we took them out. It was devastating.
It is a full-time job taking care of them. Thankfully I can get the support I need privately as my parents have the financial means to support them. If not, I would not have been able to work and I wonder if my marriage would have survived.
I have been shocked at how little support there is in Australia for kids with disabilities. This country, our politicians, should be ashamed of themselves.
I used to feel like a proud Australian; now I feel like I live in a uncaring country that discards its most weak and vulnerable.
An NDIS is essential and way past needed.
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