NDIS plan – I have a private Case Co-ordinator to help

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I have posted before that my NDIS plan has been royally messed up.  Initially I thought having my plan approved would mean the cavalry had arrived, and life would get easier. Just in the nick of time too, as my plan was approved on the 4th of November 2016.

Except as of this moment, a full three months later,  I have received no assistance whatsoever.  It’s just a document with a bunch of promises and a whole lot of dollar amounts that I haven’t been able to access.

I have been trying, but my Local Area Co-ordinator (LAC) made herself very scarce and uncontactable and essentially left me to rot.

So I waited.  And I left more messages.  And got more and more frustrated.

A friend whom I met through this blog private messaged me and told me about a friend of hers who is a private Case Coordinator, someone who manages your NDIS plan and helps you implement it.

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Exactly who and what I need!

This function should have been performed by my LAC, but I now have no faith in her, and no trust in the system whatsoever.  So I have engaged a Case Coordinator, and finally I feel like I have someone on my side. That I will get some help.

There will still be a long wait, because now my NDIS plan needs to be reviewed, because it is woefully inadequate to my needs.  It will be around 8 weeks before they can even look at reviewing it.  No idea when the review might be complete.

My originally LAC very much underestimated what I needed, even though I gave her a very complete picture of my diagnoses, and how they impaired my daily life.

I feel she was negligent.  I’m told it’s a common story, because they have rolled out this wonderful system, but no one actually knows how to use it, or how it’s supposed to work in practice.  So perhaps she’s not negligent, just under trained. Someone up the chain IS negligent however.  Millions of dollars are being wasted because no one seems to understand this fantastic new system.

As I learn, I will post a series on how things should work, because after meeting with my Case coordinator I am starting to understand.

The main problem is that a lot is left up to the disabled person to arrange for themselves.  You need to ask for the assistance you need, but no one tells you what’s available.  I asked what was possible and was given blank looks.  Then you have to seek out NDIS approved service providers, if they’ve set you up as agency managed, which I was.  You’re supposed to have a choice about this, but I wasn’t given a choice.  So I’m left with having to use NDIS approved providers, but no way to find them.

There is an online database where you can find NDIS approved service providers, but everyone laughs and admits its hopeless and doesn’t work.   Most providers aren’t even listed, and you can’t search on a generic term like ‘gardener’ and get a list of gardeners.  No, you can only search by the service provider’s name.  Useful when you don’t know who they are.

There is a huge PDF document on the NDIA website which you can download, with the names of all the service providers in your state, but there is no information on what services they actually provide.  You can go through one by one and call them or check their website and see if they provide the services you need.  Very efficient.

So the process in itself isn’t easy.  But when you have a disability, that includes considerable cognitive impairment, it’s very difficult indeed.

Many disabled people have someone else who can manage this for them, a partner, a family member, a close friend.  I do not.

And I don’t think, despite me listing my diagnoses and issues, that my LAC really understood what my disabilities are.

If you spend any length of time with me, they become more clear. But my LAC was only here for 30-45 minutes.  I can’t remember what she looks like.  Couldn’t pick her out of a line up.

And that’s one of my problems, my memory. I have no working memory.  I constantly forget what I’m doing and I jump from thought to thought, thing to thing.

I can’t stay focussed on a task and forget what I’m doing half way through.  I certainly can’t multitask anymore.  If I put the washing machine on, I need to set a reminder on my watch in half an hour to remind me to go hang it out.

I’m easily interrupted.  A phone call, or if the kids talk to me about something, I have no idea what I was just doing and can’t get back into that headspace. Sometimes I get unreasonably angry at my kids, because they keep interrupting me and I can’t concentrate when they keep talking at me.

While they were on school holidays I achieved nothing, because of constant interruptions, and my inability to get back to what I was doing.  Things as simple as my daughter wanting to show me a piece of artwork.  Literally a minute.  I want to see her work, and I’m glad she wants to show me. But I then spend an hour or more getting my head back into what I was trying to do.

I write endless lists, but then I can’t follow that list.  It’s like a recipe, some days I just look at the instructions of a recipe that I’ve cooked a hundred times, and I can’t understand what I need to do next.  So I make toasted sandwiches for the kids.

I get confused easily.  I need things repeated, and reinforced, sometimes several times. I have to write things down in complete, thorough sentences (which takes time, because with Rheumatoid Arthritis I can’t write much and I sure can’t write or type fast).  But I need to do this, because I look back at dot points I’ve made and don’t understand what they mean.  Not enough information.  I have forgotten the conversation around them.

When I need to make a phone call, I rehearse the call and write down all the questions I need answered.  I hate the telephone (admittedly I always have) so I’d prefer email communication, because then I can refer back to it.  But emails are too easy to ignore and many people just don’t respond to emails. Sometimes I just have to call.

All of this gets much worse when I get tired, hence if you spent a few hours with me, or you see me at the end of the day when I’m exhausted you’ll see my thought processes start to break down.    You’ll see my concentration lapse. And you’ll get tired of repeating yourself and me asking the same questions over and over.

And all of this gets much worse as the prednisone dose gets lower. The headache is coming back. This constant, front of the head pressure, that turns to pain sometimes.  It’s not severe, but its aggravating and it’s enough to distract me and addle my brain.

Then there’s the constant tinnitus.  Always there. Sometimes it’s a ringing, sometimes it’s more a low buzz.  Sometimes its very loud, lately it has been softer, which is a huge relief.  But it never stops.  Tinnitus also makes it hard to concentrate.

And then there’s processing speed. I can only take in one instruction at a time.  One.  If people fire off three or four things I need to do, I get confused.  I’ll remember the first one and the last one but I won’t have any idea of what was said in the middle. And I’ll ask again, and then they’ll fire off the same list, just as fast. So I have to ask them to please slow down.

My LAC did this constantly…’you just do this and this and this and this. It’s simple’ .

She made me feel like I was a complete idiot.

I think she forgets she’s dealing with sick people. With disabled people.  I felt stupid, because I couldn’t understand her multistep directions. I actually asked her if we could start over, slowly, one step at a time.  I reminded her I’m in chronic pain, and I’m on opioid medications, both of with affect my cognitive abilities.  I’ve had multiple mini-strokes ( microvascular ischemic brain disease), and I have multiple lesions in my brain .  All of those things add up to cognitive decline, and I’m not used to it yet. I still think of myself as the highly organised, intelligent, capable person I used to be.  That isn’t really me anymore though.

The point is, my LAC got my plan approved and left me with no information on how to proceed.   When I finally got her to come back and explain things, she said we need to initiate a review, because the plan was inadequate.  And then she left me to figure that out again.  IF she’d done her job in the first place, I’d have help by now.  I’d have had an assessment with an OT, perhaps even some home modifications made.  Instead, I am now pursuing these services, and awaiting a review to add in the other services I need, that the NDIS was designed to provide, and waiting.

But now I have a case coordinator, she will ensure that this plan review is done properly.  She will ensure that all the things that should have been included in the original plan will be included in the review.  And with her help, I finally feel like I will wet some help.  Eventually.

In the meantime, I have a cleaner coming this week.  She will come every week for two hours a week, so at least that’s something.  I am grateful for that much.

I have tracked down an OT and will get an appointment with her in late March. She will assess me for a powered wheelchair and recommend home modifications.

And now I need to track down someone who can provide gardening services.  Off to google.  There is definitely a niche website waiting to be built – a national directory of NDIS providers. Perhaps that should be my next project.

But for now, I’m exhausted and I need a nap.

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