Joint Standing Committee on the National Disability Insurance Scheme

PO box 6100 Parliament House Canberra ACT 2600

Wednesday, 1 March 2023

Dear Member of the Joint Standing Committee on the National Disability Insurance Scheme,

I thank you for taking the time to understand the experiences of people that use and are effected by the NDIS.

I am a mother of 4 children, Small business owner, Community volunteer, Wife and full time Carer. As you can probably expect I am very busy and always trying to juggle many, many aspects of life all at once.

My 18 year old daughter (oldest child) has a significant disability that is degenerative in nature. Currently her disability does not have a name as we believe she is the only person in the world with this condition. Her disability is rarer than rare! Therefore, not even Doctors presume to know about her condition and where it may lead or when/how degeneration will occur.

So far there are many parts of the disability that are evident which include;

• Legally blind (less than 5% vision)
• Hearing impaired (Bilateral Cochlear implants)
• Spinocerebellar ataxia (the Cerebella that controls movement of our bodies is degenerating)
• Incontinence
• Gastroenterology problems (still investigating)
• Irregular heart rhythms
• Mild intellectual disability
• Involves mitochondria (‘battery’ part of cells, so she wears out very quickly)

Due to the combination of difficulties that are involved in this disability, it becomes quite complex and time consuming to find ways to help her get on in life. And no one has the experience or information or support that helps easily. There is a lot of learning on the job, with a lot of trial and error.

We are very grateful for the assistance that NDIS provides and without it my Daughters life and the rest of the families would be very dismal indeed. So when I highlight the issues we have faced we have also had some good experiences with many of our providers and support staff. With out them our lives would be very, very different.

Since coming onto the NDIS in 2019, we have had a lot of extreme experiences with the NDIS. I have virtually no issue with providers we choose, and if we do, being self-managed gives us the leverage to ensure they sort out any problems and we can change provider if we are still unhappy. Putting that ability in our hands has greatly improved services.

Where we do have constant issue is with the NDIA themselves. Other than the great planner we had for our original plan back in 2019 we have had nothing but mind blowing, disgusting service from direct interactions with NDIS staff. Which as resulted in 7 plans to date, AAT appeal, Ministerial complaints, and a whole lot of stress and tears from me, and countless hours of lost income. Even as I sit here today writing this submission (when I should be working), I am battered, and have been crying my eyes out just this morning by the way NDIA staff have treated us.

Complaint Regarding NDIS Planning Process

I know NDIA staff have the capability to rectify problems, but the culture of NDIA has resulted in breaches of procedures and Disability Act. Other than the first Planner, not one time have I had NDIA staff do what they say they are going to do or afford us our rights within the Scheme.

I will take you through the timeline that has led us to this point;

• September 2019: After a very good face-to-face planning meeting and the planner taking the time to clarify any question she had and ensure the picture was clear, we started on our very first NDIS plan. I very much appreciated the Planner taking the time to phone me and explain why she had arrived at the funding provided and give me a clear understanding of what the funding was for, so we were empowered to use the money correctly.

• July-August 2020: We spent much time and earnestly prepared documents for our pending end of plan review, ensuring all NDIA rules and procedures were follow and answered. Due to Covid-19 restrictions we had our plan review over the phone. I thought the meeting went well, the planner did not seam to have any questions that were left un answered. When the Plan came through, I wondered if it was a mistake, the plan did not at all reflect planning conversations or documented required supports. I could not make any sense of the funding amounts against the supports requested. So, I reached out to the planner for an explanation of what the funds were for. Clearly, she had denied a lot of supports and I was completely unsure what she had denied. Therefore, I had no idea what I was able to use the money for and what we could not. The planner refused to engage in any conversation or correspondence about the plan and decision.

Due to the extremely inadequate funding, we had to submit for a review of reviewable decision.

August 2020 - February 2021: Again, we diligently tried to figure out what the planner may have denied and how to improve the supporting evidence documents. But without any guidance or clue of how or why the decision was arrived upon, myself, Support Co-ordinator, and all Therapy staff were blindly trying to add/edit evidence documents.

When it came time for the RORD (Review of a Reviewable Decision) meeting, the planner told us straight up; No, to 2 supports requested, saying “You are not going to get them so don’t even try.” When his explanation of the decisions came through in writing. He stated that we withdrew from those 2 requested supports. This shows an underhanded, misrepresenting, lying culture in the NDIA.

Further to those 2 support requests, there were many inaccurate statements in his written decision explanation. I have gone through his decision and have written a document that highlights many breaches of the Disability Act and his completely misunderstanding of basic supporting evidence documents. It is too long and extensive to point out everything in this letter. I can provide it to the Standing Committee if required.

However, it is worth noting the attacking comments he made which again shows the misrepresenting and lack of understanding culture in the NDIA. One of our requests was for 30 hours per week of support worker funding to allow me to meet my other responsibilities. He notes in his decision he acknowledges the need for 1:1 support for 24 hours a day for my daughter and then proceeds to write; “The funding provided is not designed to fulfil the entire responsibility that the informal supports have in regards to providing care to Now I don’t know what calculator he is using to work out how many hours per week 1:1, 24 hours per day, 7 days per week is but 30 hours of the 168 hours per week would have never covered the ‘entire responsibility’ of care to NDIA funded supports. He instead provides 15 hours per week of funding for a support worker. With no explanation of how that was Reasonable and Necessary in line with disability and supports requirements.

Multiple times throughout the decision explanation he states our requests are not reasonable and necessary without any further explanation as to why or how our evidence does not support the Reasonable and Necessary requirements. There seems to be a culture of using “Reasonable and Necessary” to blankly deny any request they like without then needing to give supporting evidence to why.

In this decision he got basic facts incorrect. We included an Assistive Technology request, where the Occupational therapist lays out in very clear detail why the item was requested and why no other

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method/therapy/support/assistive technology would take its place. She lists all the other assistive technology we have borrowed and tried. He goes on to say why we have not tried to do things with other assistive technology that they are incapable of doing. We have no idea where he got the idea that they could do any such thing that he suggested. Or he asked why we could not use the “Borrowed for trial” items instead of being funded one for use.

He writes that he is unsure why our very old, irreparable device (as stated in our evidence) can’t be used and why it would need replacing with the requested device.

Consistently throughout his written explanation of decision, it is evident that he has either not read supporting evidence or not understood anything about the assistive technology. And therefore, discounted the Therapist clear and expansive written evidence, for his own ill guide opinion.

At no time was any clarification or request for more information sort by the Planner.

February 2021 – December 2021: Due to a completely insufficient Plan funds, we proceed to AAT appeal. Again, we comb through written evidence trying to further explain requests. The stress of me filling holes in my daughter supports due to insufficient funding is high. The stress of going over and over the documents again is high. The cost of Therapist and Support Co-ordinators time to do this is also consuming the funding we have been provided. So many supports were unable to proceed with, as it was being spent on the appeal preparation.

The stress of the Support Co-ordinator not being able to help us with the appeal and I have to now find an advocate and get them up to speed with every aspect of the appeal and requests for supports. Again, I lose valuable working time and income.

During our appeal, we went through about 4 advocates as they changed jobs. So all my work of getting them up to speed was constantly being repeated. In the end I was the only one in appeal mediation that did know our situation. So, I was then having to directly advocate for my daughter in the meetings. So that meant it came down to me negotiating and rebutting against the NDIA’s lawyer. How unfair is that! We tried multiple time to have an Advocate lawyer, but there was insufficient funding to those agencies for us to be able to have one.

The culture of these appeals has shown me that constantly the NDIA want to make it hard for us and hope that we all give up in our requests. This has been evident in my experience and discussions with other people’s experiences mirroring my experience. It appears that NDIA are trying to save money by denying and see if we fight back with appeals. Even in the AAT appeal there was a lot of stalling on the NDIA side and constantly last minute statements of position that did not then give us time to respond or prepare for the meeting. Despite this David and Goliath battle I could not give up. We could not proceed on the funding we were provided to care for my Daughter and attend to her needs.

It reached a point where the Lawyer for the NDIA screwed in the thumb tacks and really pressured me to stop appealing for supports. It seems that once I pasted that point without giving up, the NDIA actually came to the table properly. At the end of this ordeal, the NDIA agreed in mediation meetings, to almost all of our supports requested. We walked away satisfied that we could then provide for my daughters needs with the funding.

December 2021-December 2022: We quite successfully proceeded through this year with the plan that resulted from the AAT mediation meetings. However at the end of this plan we knew a significant change in life circumstances was occurring for my daughter with her finishing year 12 at school. Life would be significant different after that. So, we began preparing early for a full end of plan review.

We had a date booked for a Review meeting at the 7th December 2022. We were on track to meet the required submission of supporting evidence time frames. However, around 6-10 weeks away from our review, our Support Co-ordinator was experiencing health problems and unable work to full capacity. This meant that our

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documents were not quite ready. 3 weeks out from our review date, the Support Co-ordinator got a diagnosis that he had fractured his back and needed to reduce his working capacity even further. I immediately called the NDIA to postpone our Review meeting as the documentation was not ready for submission to the NDIA. The result of that phone call was that our Planning meeting was to be postponed and we would be contacted to schedule an new date. I did request to set a date in that phone call but was told we could not.

On the 6th December 2022 I received a message to say we would have a plan review the meeting (as originally scheduled) on the 7th December 2022. Immediately I phoned NDIA to ask what was going on as it was meant to be delayed and I was waiting for a new meeting appointment. The NDIA staff member said she would have to get her supervisor to approve a change of Plan meeting date as it was within 24 hours of the meeting. I asked her to look at the notes and see that I was not cancelling within 24 hours, it was supposed to be changed 3 weeks ago. She chuckled at me and said Oh you called 3 days ago. I said no that was incorrect it was 3 weeks ago, then she found the correct date of my previous call. At the end of the call, she said we would not have a plan review the next day, she would message the planner to make sure she knew, and it would be rectified.

On the 7th December 2022, the planner called to complete a review. I patiently explained the last few weeks situation and why we are not going to do a plan review today with no supporting evidence submitted. I requested she let the plan run its course to the end and be rolled over until a review was scheduled and complete. She flatly refused. She continued to carry out a plan review without any supporting evidence. She did say she would keep the existing plan the same and we could request another review later. I said I did not want that to happen. It meant that if she did a review today, we could not have a normal scheduled plan review, we would have to submit for a Change-of-Circumstance review or a RORD (Review of reviewable decision). This would mean we were now time limited to appeal within 3 months, and we would then need to change our documents. Which would use more of our funds. I tried again to request she does perform a review today, that but let our current plan run its course and roll over until the review was undertaken properly. She refused. I had no choice but to accept her starting a new plan that day. Of which she said would be like for like plan.

However, when the plan came out, the funds had been cut, management of some aspects were changed, and some items stated for a reduced amount to that required. I emailed her back and asked her to check it again as she had said like for like plan. She refused again and said I was to accept it or she would do a full review with no supporting evidence the next days.

Of course, this left me furious and confused. I had been lied to and bullied again by NDIA staff. I have had previous contact with Bill Shorten’s office, so I contacted them for help. The result was that that planner would be removed from ever working with us again, and we allocated a new planner. Who then fixed a couple of things that were unworkable in the plan, and we would later set a date for a plan review when documents were ready.

At this point our Support Co-ordinator got to the point where he had to quit his job. The Company did not want to keep any of his client as they did not then have the capacity to help us. We were to transition to a new Support Co-ordination company. Then a couple of weeks later that Company pulled out of taking on all of the cases and we had to start again finding a new Support Co-ordination provider. This was 2 days before Christmas. So we had to leave it till the Christmas break was over to onboard with a new Support Co-ordinator.

Long story short, 2 weeks ago, we finally have a new Support co-ordinator who has completed the documents and we are now ready for a proper review. As requested by the new NDIS planner, I contacted him to set a review date. Yesterday he emailed me saying there are too many supporting evidence documents and he does not have the time to do a review with us, we will have to put in for a Change-of-Circumstances. Again, I am absolutely floored!!!! That means we would have 6 calendar days to submit the forms and have documents changed to support why circumstances have changed!!!!!! Talk about waste of NDIS funds!!!! I don’t believe NDIA would accept the Change-of-Circumstance review as we would have to prove change of circumstances

from 7th December 2022 (start date of current plan). My daughter had a change of circumstances in November

The only waste of money that I have seen over the last 5 years has been by the NDIS directly. Their disregard of professional opinions for their own or the sake of saving a few dollars out of some ones plan is resulting in far grater cost. They lack time to afford a review its proper course. The finite nature of a review leaves no room (or is it care from Planners?) to fix innocent mistakes, cost so much time and money in further reviews. I also believe the lack of face-to-face meetings exasperates misunderstanding. Other than our first ever plan review, no planner has met my Daughter, where they would very quickly see we are not lying in our documentation. I have explicitly requested a face-to-face meeting and am constantly denied.

I am furious, broken and destroyed. Here I am again just asking for what we are within our right to do, have a plan review. We were within our rights to change a plan meeting date, we are within our right to have an end of plan review. We have done everything possible to follow processes and meet requirements. The NDIS staff continue, to bully, change their minds, disregard procedures. The NDIS culture of tick the box for me in my job, meet my KPI’s and look good to the boss, must change!!!! This is every moment, of every day, of people’s lives they are destroying. I am just so sick of fighting for basic request and needs. I am exhausted, have total distrust in any NDIA/S staff. I am battered and bruised, and drowning. FIX IT PLEASE!!!!!

Regards,

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