MY NDIS EXPERIENCE THUS FAR.......WITH SOME TIPS IF NOT DONE YOURS YET

NDIS stands for National Disability Insurance Scheme (In Australia)

The NDIS is a national scheme to provide targeted support and better coordination and access to services for people with disability. It’s a single national system, which means regardless of what kind of disability you have and where you live, you will be able to equally access existing services.
The choice and control the NDIS offers means you can work with your own carers or with registered external carers and supports. You and your family will have more control over choosing the services that work best for you and get the support you need".

This is an example of what it aims to do...
​.It's not about paying for holidays or studying, it's about making life easier and better in order for you to get to those things so that you can accomplish them. 

​Let me start off by saying that I have no expectations, I'm not a person who has an expectation of it being my right for government assistance because I have a disability. I'm very grateful for any financial and physical assistance I receive. I've been getting a small amount of about $5,200 p/a for the last few years. I would require about $105,000 per year realistically. I'm very lucky I have Mum's help, some superannuation that I started at 21 yrs. old, and I've worked it all out so it costs the least amount, and I have very little help.

I've been accepted for the NDIS package, whatever that may be. I wanted to write about it as it was such an interesting experience. This is how all the events have gone so far.

04.05.2017 - I received a phone call one morning, just as I was about to transfer from the bed to my wheelchair. It was a young guy on the phone wanting to discuss my condition. I had no idea who or what this was, or what was going on. I managed to get from him that he was really in a call centre, and he was calling re me being referred to NDIS, and wanted to discuss my disability. He advised me that all he had was that I had a vision problem, there was no information or where that info had come from? I started to tell him that it wasn't just an eye site problem, there was much more, and began to list the disabilities.

He as a very friendly and nice guy, who cut me off after I'd listed the my main disease NMO and Osteoporosis, and ALL the issues that they had caused He cut me off after about 15 minutes and said that was enough, I'd probably qualify, even though that wasn't his call to make. I then asked what the next step was, to which he replied, " it'd go to some people and they decide if I was eligible". The call ended.

10.05.2017 - About 6 days later I received a letter in the mail from NDIS advising me I'd be getting a call to discuss my condition, as well as advising of the next steps, including the use of the NDIS website....Lol.......governments huh!

11.05.2017 - A day later another letter arrived saying that my NDIS request was successful. YEYYYY!!! Wow that was fast! The way that they've been rolling out the NDIS plans is via councils at different times. I suppose so that they can handle the quantity of people that need assistance, and the councils have time to organise their affairs in relation to care. Keeping in mind it's only for people under 65 years of age. It will be available in my area I November 2017, NOW, so they were getting prepared earlier, impressive. .

There was a note on the May 11th letter saying that a NDIS team member would call me shortly to take me through the next steps, and how to develop my PLAN.

02.10.2017 -  I received a call from someone at NDIS saying he'd like to set up a time for us to have a meeting to "brainstorm" my "goals" and work out my "plan". We discussed it a little so I knew what the expectations were, and locked in a date. I had been doing heaps of reading about what to expect, what to prepare and take with me. I felt prepared, excited and a little nervous. 

16.10.2017 - Off I went to the meeting. I got to the building they are using in my area, not too far from me, went up in the lift to level 1, and found the office. No problem, until then....The door had a security key pad on it, the glass had a huge NDIS banner in white on the glass placed horizontally right in my line of site. So, there I was knocking on the glass door, not able to see a thing, for at least 2 minutes! Eventually a nice woman came to open the door, and showed me to the meeting room. In came a nice pleasant chap by the name of Carl. He was going to be the person to brainstorm with me and work out my goals. He apologised for the office being so hot however the air conditioning wasn't working well. LOL....my disease hates heat! We chatted about stuff and then started to get down to business.

He started to explain what we would be doing and pulled out this tiny tablet size computer. He had a pen and paper handy as well so that he could take notes. After about 5 minutes into the process I started asking myself if I was cognitively challenged that morning. Was one coffee not enough to get the synapses fired up in the brain, were the drugs making me stupid, OR was this little man just stupid and had no idea what he was talking about, or could he talk at all???? I fast concluded it wasn't me! He pulled his little laptop closer to him, and started to go through the questionnaire. A standard format for everyone??? Everyone has different disabilities?? I thought to myself "ok I'll run with it". Some of the questions were very general, and most had drop down boxes to choose from?? What?? There was very little space for freehand writing, and as I noticed, he wasn't doing much of that. 

I had brought in a very comprehensive document which was the old assessment format, which I'd updated late last year. So, I had all the information I needed. I'd also sent the twit a copy 2 weeks before, which he hadn't even read! He didn't even know about the disease I had, NOR DID HE HAVE ANY INFORMATION THAT HAD BEEN PASSED ON IN THE PHONE CALL BACK ON 10.05.2017!!! By now I'm starting to really think "ooohhh ohhhhh", and start to worry. So, I started to take control. I turned to tablet around so I could see it and soon established that there were heading/categories. I also started to read the questions myself as he couldn't even read properly, or pronounce words properly. No wonder I was getting lost!! It was hilarious from then on as he kept turning it away from me, as clients aren't supposed to look at the questions, and I kept turning it back to me. Eventually the twit gave in, and I had control of the situation. 

To give you an idea of the HEADINGS, these are most of them. 
- DAILY LIVING.
- HOME.
- HEALTH & WELLBEING
- LIFELONG LEARNING
- WORK.
- SOCIAL & COMMUNITY PARTICIPATION
- RELATIONSHIPS.
- CHOICE & CONTROL.

PLUS WITH EVERY TOPIC THERE WERE THESE QUESTIONS - 
Where do you see yourself in the short term (next year) and long term (the next 3 to 5 years). Mmmmm......I'm not sure where my diseases will take me in 5 years, or where I'll be living etc. WTF???

I gave him so much information in the 2 hour meeting, and felt great, although uneasy as well, because I lacked confidence in his abilities. The next step was to write a report for his manager, who would check it, then send it off to the NDIA for approval and to decide how much funding I'd get. 

I needed to go the toilet and asked where the disabled toilet was. There were 2 other ladies standing at the door as I was leaving. No one knew where the key was for the toilet so I was unable to empty my catheter!!!!!!!! They deal with people who are disabled, and the toilet was out of bounds!!!! I said, "not to worry I'd go in the bushes downstairs". Which I did!!!

02.11.2017 - I just rolled in the door at 4.42 pm after being at the hospital all day for my 6 monthly Rituximab infusion, and receive a call from Carl. His manager has questions about costs and details for the current package and government funded equipment, and then all the paid services, equipment I've paid for, ongoing costs etc. I'VE ALREADY GIVEN HIM THIS IN WRITING AND DURING OUR DISCUSSION. He tells me he's cut and pasted stuff from my document but needs more information??? I'm tired and cranky, told him so he emailed me THE EXACT FORMAT SO THAT I COULD FILL IT IN.....THEN HE COULD CUT AND PASTE IT INTO HIS REPORT!!! Is this guy in grade one??? WTF??? It's been 3 weeks since the meeting and it hasn't gone to the NDIA for approval???? They only do 2 clients interviews a day. 

I sat down today, gathered all the information and more, and replied to his email. I also stated I'd like to see the final document as I'd like to check it as I don't have a great deal of confidence in his work. I know that sounds harsh however I know it won't even register with him, and am sure he'll do it. I feel like I've stepped into my Mum's shoes as sh's a teacher...lol.

Oh dear......WATCH THIS SPACE! IT'S GOING TO BE VERY INTERESTING.
 

If you want to know more about the process as you haven't done it yet, here are a few useful documents to look at, as well as the link to the NDIS site. 

GOVERNMENT NDIS SITE - CLICK HERE

BELOW - This form is used in conjunction with every topic listed above. 

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