We applied for Qld's Helping Children with Autism package for our other child and are still waiting. I applied when I got to Qld some months back and despite queries, it's still in the queue. Nothing I can do, really, except wait. Our eldest is not eligible for Qld funding as he is under NDIS. With the new dates we will lose NDIS if we don't get back to SA by the end of the year. This is massive for us and something that we are seriously going over and over because I love the house I'm in now and enjoying the town and things are just starting to smooth out and hum over....and now this.
As a Qldr yourself you will probably know that they are also getting rid of the EDCP programme in Qld but with the new deadline of 2020, it's envisaged the Qld govt will negotiate with the feds to ensure funding for this continues via NDIS. But in the meantime, parents are going stupid with worry trying to work out what is going on because a few mums have taken it upon themselves to assume that the govt will do nothing and whipping up a frenzy with Facebook pages and petitions...all without facts. Plus, as you will probably have picked up, Qld parents are stressing themselves out listening to all sorts of stories and doomsday predictions which is just ridiculous as NDIS in of itself is very easy to manage. But the hysteria is unreal. I've had to step right back from forums because the bullsheet is just too infuriating. People are just spinning stories with no truth in them, winding everyone up. I have enough to stretch my nerves without that! Lol.
Meanwhile, I have absolutely no idea what to do about my eldest child. And it's hurting. We are waiting for entry into EDCP again (have to go through the whole rigmarole of sitting out the weeks and weeks it takes in Qld to get an enrolment approved) because despite visiting several schools, none are equipped to educate a child like mine. And I'm not alone. There are other parents out there who are in the same position so I'm not writing woe-is-me although I admit I'm crying a lot more in the shower these days You know, it's funny, I'm not a religious person but I find myself mentally asking Lord, what is it you're trying to teach me? As though this entire run is somehow a lesson in something. That's the feeling I have and it's what keeps me afloat I think. xx
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13-04-2016 10:50 #21
13-04-2016 16:37 #22
There has been a huge uproar about ECDP. We were going to ECDP at another school until we moved.
The local primary school runs ECDP and I've called every week. Emailed and also emailed the principal. I'm disgusted to say that this HOSES at that school is pathetic and can't return phonecall. Certainly left a bad taste in my mouth so I enrolled my DD in daycare that day. I may try again this term.
It would be sad to see it go. ..because it's an education department thing the NDIS can't replace it.
I really feel for you. I don't think schools will also be equipped to teach my daughter. Which is a legitimate worry and I'd probably cry in the shower too. When I have issues with delays in funding I contact my local mp and write to local education minister. That seems to get things moving.
29-04-2016 20:57 #23
Hey @Mrs Tickle, I've just caught up with this thread. Just wondering how you're travelling?
And can I say
A) I love Hendricks gin like I love my own mother.
B) I just think you're fabulous. Do you blog? Because I would check daily, nay, hourly, to see if you'd updated that mofo. Your writing style is effing amazing. I'm so jealous. You are totally SA's loss x
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03-05-2016 00:30 #24
Hi Harvs, we're presently seriously running through worst case scenarios for selling everything up, buying a caravan and taking to the road for a year or five. I'm seriously stunned at your kind words. Thank you. I blush. And no, I don't blog. Never really thought about it either. I mean, what would I write about?
TamTam, I met with my local MP regarding EDCP. I rang up to inquire as to what was going to happen and he offered to debrief me after he got back from sitting at parliament. True to his word, he rang me, we met and I was told the following:
- The 2020 timeline stands. EDCP will continue as is until then. (Erm...yeah).
- EDCP will be placed at state school sites to be run as an additional grade. Just wondering what they'll call it - Special Grade (aka "the specials") has a certain ring to it.
- Hours of attendance would be uniform as it would be similar to attending school.
- Additional support staff would be provided and the quota of children attending would be increased.
Personally, this sounds like a glorified version of Prep and the current situation for early childhood learning (eg. Prep, Year 1) from what I've seen is a disaster. That's not including NAPALM...I mean NAPLAN. (Sorry, got my acronyms mixed up there). I also poked him about the current situation regarding the EDCP site our town has that is only being utilised a few hours a week and he's asked me to provide a synopsis so I'm meeting with the spec ed teacher to get one done and then I'll meet with him again. I do know that nothing formal has been announced so it's likely that teaching staff won't know what's going on just yet.
I have had my EDCP interview and have submitted the required evidence. I have to go through the verification process from scratch because the last school did not start it. Unbelievable and just plain sloppy but, alas, starting to realise this is commonplace. Hopefully I will get some news this or next week and then have him at EDCP and a kindy concurrently. But it's finding the right kindy!!!! Don't give up hope, though. There are thousands of us who are in limbo as well and facing the very real likelihood of having to home school. Which means buying a caravan and hitting the road because I'll go mad if I have to do it sitting in suburbia.
03-05-2016 06:56 #25
So the ECDP saga continues! It's just crazy.
Funny you mention packing up and going off in a caravan....
It's totally not the same thing. ..but I'm going to tell you anyway. This family in Canada who have a daughter with the same syndrome as my daughter pretty much did. The dad was a film maker. .. and they decided to quit their life and go live in Switzerland for a year. No 'school'... just do life together. He documented it. They decided this would be better fit their daughter than therapies and interventions. It's a beautiful film. ..in french. Called Alphee of the stars (I think).
My DH and I often joke about doing it. Yanno if we were rich! Lol
06-05-2016 11:14 #26
It's kinda the same thing, Tamtam.
Some would call it running away (I've had a few mention that to me) and I understand why they might see it that way but for us, it's about cutting out all the distractions and expenses to focus on our kids and us as a family.
Granted, it will cost some coin to get established - eg. purchasing the van, selling our car to obtain a diesel 4WD, making sure there's some funds in savings etc not to mention the stuff you need on the road. But once this has been achieved that's it. True, there are ongoing maintenance costs but nowhere near the levels that the constant churn of rent, utilities, childcare etc that we have now.
I guess if we waited until we were financially rich we'd never get it done because we are simply trapped in the low socio-economic hamster wheel of welfare, bits of work and nowhere and, as it is now, we don't stand a chance of getting out of that unless we make some dramatic changes. With good planning I know those changes will have a wonderful, life affirming effect on us all.
It's either that or die. And I don't mean kill myself I mean die inside and just give up....like I see a lot of parents here do. The deadness in their eyes and the resignation that life is **** is just excruciating to watch. I don't want to turn into that. When I woke up this morning, the first thing that flooded the waking funnels of my brain was a quote by Anais Nin. She said,
I've been wrapped up in that bud for years. I know now with the absolute certainty of a sunrise that if I don't do this, I will wither on the vine.
06-05-2016 11:24 #27Senior Member
- Join Date
- Sep 2005
Do it girl. I know a girl here who is a single mum. She is waiting for am ortho operation in public system. They postponed it a couple of months. She thought stuff it. Packed up her rental. Put stuff in storage . Took off and is currently on trip around Aus. Doesn't regret it. Do it! You can always come back to your life if you hate it.
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06-05-2016 19:29 #28
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