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I had a major stroke while 38 weeks pregnant on the 15th October 2015. My family were given 5 days to say goodbye to me as I wasn't expected to survive. The stroke has left me severely disabled and in a wheelchair unable to eat or speak properly and visually impaired with a constant buzzing in my ear. They cut the baby out 2 days later on the 17th October. Thankfully she was totally healthy.
My son then turned 15 on the 28th October.
Please be patient with my reply as I use 1 eye to type to stop the double vision but I can’t stop the bouncing so I’m very slow pressing buttons between bounces and I make lots of mistakes with my 1 unsteady hand so have to keep deleting. Between that and my vision impairment it takes me longer to reply. Sorry.
Here are the details of what has happened to me so far with my NDIS journey:
- In October 2018, I requested through my former LAC to begin the Unscheduled Review Process
- My LAC contacted me in November 2018 after her return from annual leave to sit down and discuss my current plan, my needs and support me with getting the evidence to support my S48 – Change of Circumstances review.
- After all my providers provided the documents I provided my LAC with my signed S48 Review Request via email on 26/02/2019
- As a new Plan Review process was due to commence at the beginning of March, I agreed to wait to submit my request through the new process as it was advised there would be a quicker turn around on the response.
- On 04/03/2019 – My Plan review request was submitted
- On 06/03/2019 – I advised my LAC that I had received a phone call from someone at the NDIS stating that my S48 would be declined – and I could either bring my scheduled review date forward or wait until my plan expired and that it would be best to retract my form but the request for an electric wheelchair would still be put through and also that I could request a new LAC if I wasn’t happy with the one I have but I am extremely happy with everything my LAC has tried to do for me. She comes out to my house whenever I ask her to for meetings, as I can’t talk on a phone and I’m visually impaired. She has always answered my emails aswell, knowing that is my preferred way to communicate and not once complaining about it.
- On 07/03/2019 –
The very next day. I received another phone call stating that they had considered my information further and that the S48 was approved. I then received a letter in the post stating that my S48 – unscheduled review had been approved and i would receive a phone call from the NDIA
- The National Call centre advised me in a phone call that an LAC would be conducting this meeting. At that time, I had been advised LAC’s do not conduct the meetings (this changed in April)
- I contacted the enquiries line several times through people calling for me while I was present and also via email, of which i CC’d my LAC in, with no action taken regarding my approved unscheduled review.
- On 09/04/2019 a Scheduled Review had now been triggered (not my S48) and so my LAC conducted a meeting with me in my home on 11/04/2019
- The plan recommendations and information obtained from this meeting was submitted on 18/04/2019 to the NDIS, referencing the above, requesting an early plan approval.
- In the meantime I have worked to organise advocacy for both housing and NDIS and been in touch with my local MP at Miranda Elani who confirms I am still on the top priority list.
- On 03/05/2019 I received a phone call from my LAC to advise that information had been received that my plan will not be approved until 2 weeks prior to my current plan expiry date due.
As I am 43 not 83 with a 3 year old daughter now, I find this unacceptable as she is now copying me, so my rehab has a trickle on effect especially with my speech, people are starting to notice and comment about my daughters speech aswell and since I had to cancel all my services last year due to owing money because of insufficient funds in my rehab part. I really feel my hands are tied and I have no option left but to ring Julie Adams (contacted her but I’m not in her electorate) from Scott Morrison’s office and to contact the media. The frustrating thing is I have plenty of money left, but it’s in the wrong area that I can’t use but I don’t have enough for what i do need.
I am not the only but feel like if I can get my story out there I will be the voice for many. XXXOOO
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