Secondary Progressive Multiple Sclerosis and Autism support needs (Participant experience)

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Submission 2723

Submission on the NDIS Amendment Bill

Name:

I am a: Disabled person  Family member / supporter ☐ Clinician ☐ Other: ___________________

I ask that the government withdraw this bill for the following reasons.

  1. My connection to this issue I have been diagnosed with Secondary Progressive Multiple Sclerosis. My ability to

walk, drive, work are limited. I am also becoming more limited with the use of my

hands. My daughter is also on NDIS has been diagnosed with Autism and ADHD and

anxiety contraindicated with a disabled mother. I am support worker for both of us as

NDIS did not confirm a requirement for help.

  1. My overall view of this Bill I have many concerns about this bill. Although I had multiple reports from Physios,

OT’s and my Neurologist the help I received was minimal and I was told by the NDIA

consultant that with Physio my symptoms will improve and I will need less help. This

was in spite of all the reports in front of them telling them the opposite. In the last

year, all of my symptoms have worsened as expected and I will be submitting more

reports to a department with less funding and less understanding and therefore

providing even less help, though the cost of this department is exorbitant.

They also do not seem to understand the extreme mental health harm done by the

co-morbidities of AuDHD and having a disabled mother as the only support.

  1. My main concerns Choose what applies to you:

 Communication and accessibility

 Administrative burden

 Loss or reduction of supports

 Community participation

 Other: The Unqualified Staff of NDIA and underdeveloped AI

Submission 2723

 Communication and Accessibility is already a complicated resource

between LAC’s who keep leaving and new people in NDIS to speak to every

call. To have this limited and closed down removes even the most basic

support provided at this time.  I have spent over 4 hours on each phone call to each group as they back and

forth trying to work out who is responsible and if any help can be offered. All of

this investigative report would be shut down by limited AI. The number of

specialists reports I have provided only to find they were not added to my

request or investigation have been numerous. I then also discovered the

representatives could not read or understand them so used AI to summarise,

missing huge insight into needs and requirements. This bill will only cement

this inadequacy in.  I have already had to do reviews and more reports to again demonstrate my

inability to drive as they did not get that from the first 4 reports. I ended up

with two NDIS reports on the same day one denying and one approving two

weeks apart with no explanation why. This will become normal under this

legislation.  I have been giving no community supports, which leaves me locked in the

house. My highly anxious daughter was given small community support with a

stranger an hour a week ignoring the fact we live in a regional area with

limited community supports to begin with. The nuances lacked by current

reviews will only increase under the new legislation.  The person who did my first NDIS assessment had never done one before

and they stated my MS would get better with Physio. This made the person

from MS QLD gasp. My MS is permanent, progressive and will never improve,

but the NDIA representative did not read that in the reports and has no

understanding of the illness they are creating support for. Now as the AI will

be trained on what is done to date all of the faults and lack of understanding

will be included and made worse if this legislation passes.

  1. What I want the committee to understand and my position Adding AI to a broken system will not fix the system. The legislations seem to

acknowledge the broken system and is stating the only way to fix it is to reduced it so

enough people will not have the physical or emotional ability or the support to deal

with it. The legislation is obviously to shut it down as the Minister would be able to do

this anytime it becomes inconvenient to the current government’s sales pitch.

Submission 2723

I have already requested VDA and set up my will to try and support my daughter as it

is quite clear the government finds disabled people inconvenient.

I ask the committee to consider my lived experience when reviewing this Bill and as

stated I ask that the government withdraw this bill.