Before I begin, I want to point out that my support provider was witness to a document I signed, regarding DHHS and my personal information. Any information about me should be not be disclosed to any parties, except on my approval.
Here is a letter I received in response to a blog post I had made on 8 April, which was posed as an open letter to the NDIS. In the blog post, I talked about my urgent need to get out of my current living situation.
This response has failed to outline any possible solutions, instead focusing on the cost benefit issues by sticking to out-dated disability policy. The response I have received regarding my condition, my disability, and the inadequacy of the supports I receive right now, does not factor in my particular circumstances whatsoever; nor does it properly address the issues I had written about in the post it’s supposedly in response to. This is simply a generalised, standardised response, completely devoid of compassion and empathy.
Here is the letter below. I will let you take a look at it for yourself:
Dear [Dr] Gibilisco,
Thank you for your email of 8 April 2018 to the Minister for Social Services, the Hon Dan Tehan MP, regarding your transition to the National Disability Insurance Scheme (NDIS). The Minister has asked me to reply to you on his behalf.
I appreciate the time you have taken to provide feedback about your transition to the NDIS and your dissatisfaction with the delay between meeting access to receiving an NDIS plan.
I understand that your region of Victoria is not due to commence any NDIS planning until September 2018. This is due to the bi-lateral agreements made by each jurisdiction and the Commonwealth government. Bi-lateral agreements outlines the phasing in arrangements for each jurisdiction and when each area can access the NDIS. While this will take some time, by 2020 the NDIS will be fully accessible Australia-wide.
I have been advised the Victorian Department of Health and Human Services (DHHS) are currently meeting your support needs. The National Disability Insurance Agency (NDIA) will continue to work with DHHS to assist with resolving your concerns in the most appropriate way.
I can confirm DHHS have committed to support you during your transition to the NDIS and have indicated the responsibility for supporting you remains with the state at this time.
Thank you bringing your concerns to the Minister’s attention.
This brings me to another possible social dilemma concerning the NDIS; when will it be rolled out? Will it be rolled out prior to the next Federal Election, or will I have to wait even longer?
An Update on My Current Situation: What is Happening at Present
There is a failure to regard my humanity, and it is so prevalent in this place. I am not a shared support accommodation customer. I have Friedreich Ataxia, which I reiterate, is purely a physical disability.
My physical abilities are deteriorating, but my environment remains the same: shouldn’t the progression of my disability mean that I become a priority?
On a more hopeful note, I have finished writing my new book, and it will be available soon. It outlines the last six and a half years of my life in shared support accommodation, taking a social political perspective to the struggles I have had to face here.
This was all done with the help of my brilliant and lovely academic support worker, Christina Irugalbandara.
Hi Peter, I am soooooo hearing you and I fully understand your reasoning. I have also experienced the runaround, lack of accountability and absence of compassion and empathy from organisations that are supposed to help. I have not found any answers so far to finding a powerful advocate, but I am convinced it is a human right / legal issue. If OK with you, I’d like to stay in touch re: this issue. You are not alone and we need to join forces and fight for our rights. Please use my private email if possible from now on.
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