The NDIA has forgotten its purpose to serve the most vulnerable, and it leaves families with an impossible choice
‘My son Oscar is the brightest, warmest orb of human light to walk the earth. He brings joy wherever he goes.’
Oscar has a rare genetic disorder – a partial duplication on chromosome 4. The impact of that has been significant, with a moderate intellectual disability topping the list. He has a profound speech disability, epilepsy, other physical and emotional issues that cause ongoing chronic health concerns, and cerebral palsy. He’s quite the package.
When his plan was coming up for renewal in early December last year, we wanted very little to change apart from some extra funding for more overnight respite as we ramp up plans for him to move into a supported living house with some friends. Instead of additional funds for overnight respite, we have found out all of his respite funding has been cut. Funding we had to develop skills to move out of home, cut, because we didn’t use it. No acknowledgement or allowance for unspent funds due to a global pandemic bringing everything either to a complete stop or a glacial pace at best.
What sort of civilised society leaves behind the people who need help the most? Or worse, makes them beg.
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