Editors Note: This is republished from the author’s Facebook page, with their kind permission. It sets out their frustrations as to the rollout of the NDIS, the lack of information being provided by the NDIA and the lack of coordination with existing State programs.

 

I try very hard to make sure that I stay true to my vision that this adventure we are on is a family trip. We are not victims, we are not entitled to anything more and this is an opportunity to make the best possible community for both our kids.

I’m flawed, I indulge in too much junk food, too much tv/FB, purchase lots of Lego and read lots of literature to keep my brain churning more than it should.

I was asked this week as to how I had avoided becoming an angry person in the face of some of the events of the last five years. Before Eliza joined our family, I was angry, about so much, I can’t even pick one thing. Depending on who you were you might have known I was an angry person, you might have only seen the exhausted flat soul after the fire or you might have been around for the attempts to have fun that felt fake and contrived.

Eliza and the mother she needed me to be sorted that out for the most part. Jeremy still cops the remnants of that fire.

Last night I attended a forum on early intervention in Queensland. It made me angry. At first I felt disappointed, then ambivalent, sarcastic and finally enraged. I felt a sense of dread that I was going to explode and this was not the time and place.



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This fantastic opportunity was well organised by ECIA’s QLD chapter and they had pulled off a large and eclectic group together in one room. Thank you Katie.

The room was full of 200 people with competing interests, differing skill sets and varied communication styles. Sounds like a recipe for a challenging debate on the key issues and maybe even some ideas for a way forward particular to Queensland. No. Sorry no.

The ideals of early childhood intervention and the inter sectorial challenges of child centred practice, pre school education, respect for families, functional support and inclusion got boiled down to a government department/agency hot potato. Yep, hot potato that nobody could or would handle.

Queensland leadership of the challenges, the opportunities and the way forward was missing, absent and seemingly a mythical being not unlike that glitter pooping unicorn.

It is brilliant that ECDPs will continue till 2020. The tenacity of Karen Bennett is to thank for that.

  • We needed to understand issues beyond ECDP last night.
  • We needed to hear how will daycare centres and kindergartens support their children and families with no information on the future of Inclusion Support funding.
  • We needed clarity on access partners vs Local area coordinators vs planners.
  • We needed to be challenged to think beyond the mythical silver bullet of “therapy”.
  • We needed leadership to balance the interests of providers and their cost model with the needs of children and families
  • We needed to hear experiences of families already exercising choice and control and making the most of informal supports.
  • We needed to distinguish between the early intervention and disability streams and what that might look like in Queensland.
  • We needed transparency over the challenges to funding community awareness with the ILC area not getting any money in QLD till 2019 (ILC = information linkages and capacity building)
  • We asked for answers, we asked for clarity, we asked for Queensland specific transition plans.
  • We got answers about the National rollout, an education department email address, and a sense that the confusion was with us.

I want to be really clear. I am cautiously optimistic about the NDIS. I, like many others, hold on to the hope that it will represent something better. We know that every positive contribution we can make will pay dividends beyond our children. This is a huge positive change with opportunities for us as an inclusive society to do great things.

But for the love of all that is glittery, rainbow infested and unicorn like, we need someone to lead this. To champion the concepts, embrace Queensland’s quirks and flaws and rope in the cowboys who are trying to paint the unicorn in some other colour. No more hot potatoes, no more white hot anger for me and no more political footballs.

I don’t want to be angry, I want to be constructive and I want people to challenge their preconceptions that this is someone else’s problem. It’s not a problem, it’s an opportunity to do the right thing. How, who and when is hard to see through the steam coming out of my ears. The why is very clear. Why, because Eliza and her friends need us to.

 

Sue Tape is a Queensland mother of two. This post was recently posted on her Facebook page. Visit Sue’s Facebook page.

The original post on Sue’s Facebook page can be found here.

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