My son has gained some wonderful experiences – community access that is suited to HIS interests instead of ‘the group’- and great new skills in independence as we work towards his goals. BUT, I (and other carer’s in my position) live in fear of the next round and the unpredictability of plans and funds.

NDIS was promoted as an ‘insurance model’ but it is not being delivered as that. All the worst parts of government funding are being put into action: having to prove we need something, having to prove we are being responsible with the money but then living in fear of either running out too soon or not using enough so we don’t get the same allocation for the next year.

Life has ups and downs, it is not a predictable project so sometimes we need more support and sometimes illness etc happens and we don’t access the services for a while. This does not mean we don’t need it next year!

It’s a dreadful situation to be in and I’ve even been given advice to use services that are terribly overpriced just so we can use up funding like we used to do in the civil service – “or you won’t get it next year.” How very wasteful.

I would love to have a calm knowledge that each year we could work towards his goals as we need to without the stress of having to do everything NOW and use up funds just because it’s there.