Hello 2018!

Well I see that it’s been since October since I’ve written. Woops, sorry! Life has been hectic and I’ve got a spare moment so I thought I’d sit down and catch up with what’s been going on in the world of Beth.

I know the blog is called autistic children, but our girl isn’t a child anymore! She’ll be 19 in March and she’s no longer at school. In fact she’s currently doing nothing! School sent a referral last year to the NDIA to get Beth on to the NDIS. Probably mid year if not earlier. I called them in September to explain that I hadn’t had a call to have our assessment meeting and was told that they had no information there at all. They sent me our more forms which I filled in, including a doctors report. I called them and called them and by the time December came they said that there was a 4 month backlog and we wouldn’t even be getting our meeting until term 1 this year. So Paul messaged our local politician who called them, who called us. The call I got this week was to approve us to go to the next level which is approving us for an assessment meeting. The problem is that I need to know what level of autism she is. This is apparently on the diagnosis paperwork that I have no bloody idea where it is, and she was diagnosed 16 years ago! I asked via a facebook help status and have been told that this level will be on the paperwork that the school sends to the NDIA to get the ball rolling. So… I’ve spoken with my contact at Beth’s school who will check it all out on Monday and let me know.

For my overseas readers I’ll explain. There is a new wiz bang organisation system called the National Disability Insurance Agency. They’ve taken over funding for people with a disability. The scheme is called the National Disability Insurance Scheme. Hence the confusion between NDIA and NDIS. It’s said to be wonderful for our people as it will cover things such as respite, day programs, some transport, even accommodation and other long term goals. It’s just come out though in our area so it cuts out any other funding that Beth would have been eligible for. Her school is in a different zone than we are which means that the other students there are still using the old funding system. So the school haven’t dealt with anything yet to do with the NDIA. We were hoping to have our assessment meeting at the school to try to help their coordinator to get her head around how the whole system works too. It seems to be very unorganised at the moment and I’ve heard some horror stories. You can self manage the funds, or have the NDIA manage them, or appoint a 3rd party to manage them. One of the issues I believe there is, is that the assessment isn’t done with the school, as other funding was done in the past. As a school does many funding applications they know the right wording, and they have somebody to help them navigate and get the best funding for each individual child. And it takes any emotion out of it. The new system is based on parent answers. Parents who naturally want to show their child in the best light they can. Who may think of something that their child has done ‘wrong’ and not want to share that, even though it may be one of the things that decides how much funding they get.  And, some parents with children with special needs, have got special needs themselves. Not to mention the amount of people who have English as their second language, so there are barriers there also. Hell, I’m finding it daunting enough and I sort of get how the systems work. So there will be many kids left high and dry with no chance of funding. Then there are ones like us who are told that there is nothing happening for the first term of the year. If we’d have done the assessments earlier, when Beth was still at school, (if the system was out then) it wouldn’t have been an issue because she would have been at school during the day. As it is she’s home with me now. Of course she loves that! And I’m lucky that currently I have a job that I can work from home with. Many parents aren’t so lucky though and I really feel for them! Anyway, that’s our big debacle…

In other news, Beth graduated and did a lovely speech, surprising others I think as she does keep to herself. For some reason she punctuated it with sniffs and throat clearing though, I think she’s got so used to pretending she’s sick when at school that she just went with that! I was pleased as money was a bit tight and I was loath to spend another fortune on a dress that would never be worn again. Lucky, she fits into some of my clothes now! So she wore a dress that I’ve only worn once or twice and of course looked gorgeous!

Beth also completed a creative writing class at Your DNA, the media studies school that she was at one day a week. We booked her in there 2 days a week this year too but have unfortunately had to put it on hold until we can get this funding thing sorted. Here she is at the class book launch. She looks pretty professional doesn’t she?!

So for this year we’re still both doing piano and gym. She loves gym. Piano -  not so much, but too bad, it’s what we do! I’ve got a few plans up my sleeve. One of which I’ve talked about before; opening a gym for teenagers and adults with a disability. My business partner Eloise and I are assessing what different options we have at the moment, and what path we are going to take to start the business and do some training. It’s a very exciting venture! The plan will be that once we open up our own business, Beth can work with us part time. Until then, I’m looking into what work she can perhaps do with animals, depending again of course on when we get the funding thing going.

I promise to write more this year. Last year was a bit of a yucky year for me, 2018 is going to be a fabulous one! I have big plans! School is back next week, so I’m sure a few of you are excited. I’m not looking forward to it, I’ve really enjoyed my kids this summer so don’t want to go back to a routine. Though I don’t have to do school runs any more so that’s very exciting! Speak soon! xxx

About Sarah

Mother of an autistic child wanting to write about my personal experiences
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2 Responses to Hello 2018!

  1. JO Van Dort says:

    Great photos Sarah. I had Daniel’s meeting on Monday 22nd. Preparation is key for anyone. Beth you are truly an amazing, courageous human and your mother aint so bad either. This blog has helped me more than any other blog or support group and really gave me a positive view of Autism and the joys to be had.I read it in secret for many years and finally contacted Sarah. The rest is history as they say. I encorage any of you who know of people who require a realistic look at life on the Autism Spectrum to drop by and just read some of the stories.
    Look forward to catching up this year XO Love you and what you do.

  2. Sarah says:

    thankyou Jo. Sorry I only just saw this! Love you too, going to write an update now xxx

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