Another open letter to the NDIS

I am writing an open letter to the NDIS once more in the hopes that my current situation is alleviated. 

By way of introduction, I will start by saying that my 2018-2019 NDIS plan has been a successful one. That is to say, by self-managing my plan, I was given the opportunity to be more active in pushing to achieve my goals. In the course of doing so, I published a book, wrote various articles and posts online, participated in academic forums and events, and formed an incredible team of support workers. 

The issue then is, what is happening with my new support plan? I attended a planning back in April 2019 to finalise my new NDIS plan. It is now July, and my plan has still not been implemented. 

So then, what is the hold up? 

I wrote the following email to various people involved in the implementation of the NDIS on 22 June 2019, when I found that I could no longer pay my support workers through the NDIS portal.

“To whom it may concern,

I attended a plan review meeting on April 12 2019, to finalise my NDIS plan for 2019-2020. It has been two months since the meeting and I have not heard back from the NDIS regarding the status of my new plan. My old plan (2018-2019) has expired as of June 15 2019, and as a result I am unable to make payment requests and pay invoices. This means I have a lot of outstanding invoices from my carers.

Please inform me of what I may do, as I am a severely physically disabled individual with high support needs, who is dependent on the NDIS funds for my support and care.”

I was under the impression that I would at least be given an extension for my plan so that I may continue to pay my support workers while the new plan is formulated. However, my plan had expired and I was becoming very worried. I was given my planner, Ben’s, email address and I tried to get in touch with him. 

“Dear Ben,

I am very concerned as now I cannot use the portal to pay my support workers, this is not fair, is there something that can be done immediately?”

Soon after this, I was contacted by Ben. His email is as follows: 

“Hi Peter,

I am the Planner you met with for your plan review.

I received your email query about you being unable to submit your invoices.

For now please send the invoices to me, and I will send them to our provider payments team on your behalf.

You are unable to submit your invoices because your plan has expired. Please be assured that your supports will continue.

This morning I emailed  Sandra Knight to request your SIL Quote. Once the NDIA approves the Quote, your plan will be approved.

I apologise for not having been in contact with you earlier and sincerely apologise for any upset this situation has caused you.

My contact details are below and I am happy for you to get in touch with me to discuss the matter further.

Respectfully Yours,

Ben” 

Then on 27 June 2019, I sent Ben my outstanding invoices which needed to be paid. A week later when I checked, the invoices had still not been paid, and I was being sent more invoices on top of the already outstanding ones that I had. I sent Ben an email indicating this situation on July 5: 

“Hi Ben,

I am finding it very difficult at the moment to continue my work without the new NDIS plan.

My support workers are very compassionate people and I am very lucky to have them by my side. But the problem is, how long can they go unpaid? I have sent you their invoices from two weeks ago, and they are still awaiting payment. And I have more from this week that need to be paid as well.

It is close to 3 months since I attended the planning meeting with you, and since then there has been no update on the new plan. This is a major setback for me and the work that I do.”

When there had been no follow up to this email by the NDIA, I sent another a few days later. It reads as follows: 

“Hi Ben,

I am becoming very agitated about the delay in implementing the new NDIS plan, and the lack of communication from your end. It is, quite frankly, ridiculous that the new plan has been held up for 3 months. You do not need to keep up with my articles to know how difficult it is for me to function without my supports.

I believe that I am eligible for an extension of up to 3 months for my plan, until the SIL has been sorted, especially since I attended the planning meeting back in April. My support coordinator has advised that the NDIA should not just let plans expire this way. Please rectify this situation immediately.”

The last email above is the latest in the chain of emails I have sent regarding this issue. I am still awaiting communication about the status of the new NDIS plan, and the invoices which are yet to be paid. 

I find it ridiculous that I am being made to wait this long for my plan to become finalised and implemented. To my understanding, and according to Ben’s email, the plan is being held up due to the SIL quote. Now, I am no stranger to the troubles caused by the SIL system.

The SIL quote has been an ongoing issue for me. Last year, my service provider sent a SIL quote of around $350,000 to the NDIS, which was approved. This is ridiculous to me, considering the care I receive in this home is nowhere near the standard to what I should be receiving for that amount of money. It angers me even more when I consider how I was made to compromise my comfort and safety to receive less than half that amount in self-managed funds for my own supports. 

And to add insult to injury, to receive news that this is partially why my new plan is being delayed, only increases my agitation tenfold. 

I also want to highlight something Ben said in his email, once more. He states “This morning I emailed  Sandra Knight to request your SIL Quote. Once the NDIA approves the Quote, your plan will be approved.” This email is dated June 24. Why did he only email Sandra Knight that morning to request for the SIL quote when our planning meeting was conducted almost 3 months prior? 

Do you understand how much pressure this has put me under? Even without the plan, I still need my support workers coming in every day. I have written books, articles and countless blog posts on why this is the case: what I really need is 24 hour one on one support, however I have made a compromise and agreed to receive funding for 6 hours a day with an independent support worker. 

Without the new plan, I am becoming anxious and agitated. This is on top of the anxiety I already face living in this shared supported accommodation. It is especially difficult for me, knowing that this could possibly make me lose my academic support workers. 

My current academic support workers and I have built a strong support system that maintains the good things in life that I need to continue my work. It would be a devastating setback for me to have to find new support workers, because I would have to start from scratch— which is an impossibility for me today, due to my progressive disorder. 

Finally, I believe the work I have done has been an immense contribution to the NDIS. What I want is to continue making an impact with my knowledge and experience, and I believe my insight on these issues are very valuable and should not be overlooked. 

 

Thank you to the beautiful and talented Christina, who has inspired me with her academic help.

 

Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

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