The NDIS and how that’s working for me

Whelp, the NDIS lady finally came over yesterday.   Two months after having my plan approved, with all this money sitting in a bank account and me having no idea how to access it, she came over to explain it all.

I have been trying to get her to explain it for all of those two months. She’s made three previous appointments, then broken them. This time she came, and she brought a service provider to do my house cleaning for me.  It looked promising.  But I’m still left a bit WTF about the whole NDIS thing.

I keep explaining to people I need things written down. I have a terrible memory, I mean really terrible. And I don’t understand information when people bark it at me in a great big glut.  You need to speak to me slowly, and break things down one point at a time. My brain doesn’t work the way it used to. This is a source of great upset to me, so by talking fast and looking annoyed at having to repeat yourself, you’re actually making me feel a whole lot worse about it all.  It’s very confronting to have to ask people to speak more slowly, and to repeat themselves, when once upon a time you were a bright, clever person.

You see I used to be a web developer. A computer programmer, coder.  Generally rather bright people, coders. At least in a mathematical way.  I was in charge of ‘Small Systems’ which meant maintaining eight disparate systems that performed various tasks at the Australian Quarantine Inspection Service. I was put in that job because I had a great memory. When a bug report came in on any of those systems, I would almost always know exactly which bit of code to check out, fix, text, update.  It was recognised as my talent.  I was an average coder, got the job done, but I never wrote earth shattering, clever code.  But I could keep lots of balls in the air at once, and work across several problems at once, and that was a pretty nifty trick that few could do as well as I could.

It was my skill. I was really good at it.  Note the heavy emphasis on WAS.  I now have trouble remembering what day it is.  Or what I had for breakfast. Or how to spell ‘cat’. And I can’t take in information quickly, it needs to be slow, and one thing at a time.  I write everything down. If it’s not in my phone, it doesn’t exist and it won’t happen.

You would think that an NDIS consultant, someone who deals with people with disabilities all day long, would understand that I’m not so quick anymore.  But no, she kept telling me ‘I’m sure I told you all of this already”.

I didn’t argue, because she may well have told me ALL of this already. But she didn’t write it down.  And despite my several emails and three previous appointments that she’s cancelled, she wasn’t able to answer my one simple question, how do I access this money that I can see sitting here?

Turns out I just have to ring people and they bill the NDIS for the service. There’s a list of service providers, from whom I can choose anyone.  I think.

We checked the portal and looked up a gardening service and then she says “Oh yeah, we don’t have any gardening services in this area.”

I reminded her that gardening was my top priority, because I cannot do the gardening work anymore, and there is funding in my plan for it, so what to do?

She turned to the cleaning service representative, who chimed in and said maybe the cleaner could push a mower around.

This is all sounding SO professional so far.

I had to disagree. I have a large yard, and it’s a hard yard to mow.  I can do it in 45 minutes, but most people can’t.  I paid someone to mow the lawn and she took almost two hours and charged me an obscene sum to do it.   So, no, the cleaner can’t just push a mower around. I I need proper gardening services, I need the yard cleaned up, weeded and then made accessible for power wheelchair, as documented in my plan.  No, the cleaner can’t do that.

She said not to worry, she’d look into it.  (The brush off).

She gave me the number of the bushfire service and told me THEY will come and do a clean-up, all I need to do is ring them and tell them I’m a person with a disability and they will help me out. She promised me that would happen before Christmas, but it didn’t.  Admitedly she didn’t specify WHICH Christmas.

Nevertheless I will ring them today and see what the real story is.  Stand by.

She then looked at the cleaning budget with the representative from the cleaning company.  They asked me how many hours of cleaning I’d like.  I said I didn’t know, I hadn’t thought about it. What was budgeted for? What was normal?

They both looked at eachother as if I was a very special sort of stupid.

I reminded them that I’m new at this.  I don’t know how it works. I don’t know what’s typical. I’ve never had a cleaner before, I don’t know what to expect. The lady from the cleaning company said that she suggested  a cleaner to come once a week for three hours.  Great.  So how many weeks will that last me, given the budget, I ask.

She does the math. Oh dear. Well, less than six months.  You’ll run out. We’ll need to adapt your plan.

Seriously. The plan hasn’t even begun to be implemented, and we’re already needing to adapt it.  Better yet I have to ask for it to be adapted.  Another phone call and a letter and a few forms to sign.  I have to tell them that the plan is inadequate because my condition has deterioriated, and then they’ll review it.  I’ll need medical documentation, and it will take 3-6 months.

Ok, fine. Another phone call, another doctor appointment and I’ve written down exactly what I need to say and do. And in the meantime I can start with the funds that are already there.

Next thing, home modifications. There are only two service providers available, and I’ve already had one lot assess my home and make some suggestions.  My provider said that was excellent.  I told her it wasn’t excellent at all, because the plan they came up with was totally wrong and didn’t serve the purpose for which it was designed – allow a power chair access inside and outside my house.

I showed her the plan.  She tut-tutted.  I’m not at all sure if she was tut-tutting me or the home maintenance company though.

So she told me to call the other people.  She said they are much, much better.  They will send out an OT and start from scratch.  Horrible waste of time, and doubled up of effort, but I will not use the first contractor.  What they did was ridiculous.  And hideously expensive.  Now I realise that the money isn’t coming out of my pocket, but it is coming out of someone’s pocket, namely the government.  And I can see exactly why the NDIS budget is blowing out. As always, there are limited ‘approved’ suppliers, and therefore they have the market cornered.  Which means they can charge top dollar for very average work.  Why I can’t hit the open market and get any qualified builder, plumber, whatever to do the work is beyond me.  THAT would create competition, jobs and efficiency.

Nope.  Have to use specific suppliers.  Protected industries, and as already seen with the gardening service, there may not be a provider in area, so what then?  I’m just outside the capital city of Australia.  If there is a lack of service providers here, imagine what rural areas are dealing with?

Additionally the paperwork and time that my plan has generated thus far is ridiculous.  And nothing has been done yet. And we have to start over with an amendment.  Maybe if it had been planned properly from the beginning, that would be more efficient?

Last issue, the ongoing saga of the power wheelchair.  It was applied for via EnableNSW, but because I transitioned to the NDIS, the chair application was supposed to have been transferred over. Except it seems to have disappeared.  I asked my provider about it, she said we’ll need to start from scratch with a new OT. I questioned that too, the work has already been done.  Why start over?

She said she’d chase it down.

She’s doing a lot of chasing down. Not much straight answering of questions.  I have total faith that it’ll work out.

I’ll email my old OT at the Queanbeyan Hospital and get her to look into it from her end.  There is nothing in my NDIS plan for the wheelchair, so I guess it will be another request for a variation.  It has been 9 months since I started the process of applying for a funded power chair. In the meantime I have bought myself a lightweight wheelchair with a power assist.  It was very expensive, but I need it now. I couldn’t wait.  That’s a solution for needing to go shopping, but it doesn’t help me get out of the house, because the power assist just isn’t powerful enough (regardless of what the youtube videos show).

So I don’t know if you’re getting my point, but this is all the most amazing amount of bureaucracy, paperwork, emails and phone calls, and I’m still not quite sure what happens next, or how long it will be before I get any actual help.  It was April last year when this process began. I cannot say I have received any assistance as yet.  They did send a cleaner once, after my elbow surgeries, but she didn’t actually clean anything, so I don’t really think that counts.

The cleaning company lady said she will come back next week with some forms for me to fill out.  And not to worry she’ll handle everything.  I reminded her though, that the gardening was far more critical to me, and again she just brushed over it.  She wants the cleaning contract. What does she care about my gardening needs?

I have $4000 budgeted for a year of home help.  That includes gardening and cleaning.  With a cleaner costing $43 per hour, that gives me 93 hours of cleaning.  At 3 hours a week that gives me 30 weeks of a cleaner, but no gardening.

She said again ‘Don’t worry, I’ll look into it”

I have heard an awful lot of ‘Don’t worry, I’ll look into it” since my plan was approved on the 4^th of November 2016.  Two months the money has been sitting there, and I haven’t known what to do next.

And I haven’t got any say in what the priorities are. Apparently what I consider the top priorities don’t gel with the cleaning company getting this contract and lot of work, so she’s just talking over the top of me.

So I will get onto their little portal and try to find an approved gardener.  Both of them admitted that the portal doesn’t actually work very well, and not all providers are listed. I asked how then was I supposed to find someone and they just said “We’re working on fixing the system”.

Well, of course. That’s fine. No probs at all.  It’s not urgent…

Obviously I’ll just take what I can get and be grateful for it, at least I will get some help.  At some point.  But at the least I’ll change the 3 hours a week to 2 hours a week, then I’ll have a cleaner for 46 weeks, rather than 30 weeks. See? I can do the math given time, and without people talking at me from both sides.

And I’ll start making phone calls. Trying to organise services.  I only got about three hours sleep last night, because my doctors in their wisdom refuse to prescribe me any more oxycodone.  So the pain was horrible last night. I did sleep through sheer exhaustion, but it’s the kind of sleep where your’re dreaming that two grizzly bears are gnawing on you and slowly ripping you apart. Very restful.

So if I seem cranky, that’s part of why.  And now I better start making phone calls. I have my phone numbers.  I have a basic script to follow, and prompts.  And hopefully I’ll get somewhere today.