My Recent Experiences With The National Disability Insurance Scheme

I am writing about my recent experiences with NDIS, the difficulties in getting my disabilities recognised, the unprofessionalism of staff, and the risk of harm as a result of their decisions.

I was granted access based on my diagnosis of Autism, my other disabilities weren’t recognised at the time however I wasn’t made aware of this, I was just told that I’d met the eligibility requirements. I went into my planning meeting with the understanding that my physical disabilities had been accepted too and answered all the questions based on my whole person function, not just autism specific. It was months later that I was informed that only autism had been recognised.

At this point I began a review process to have hEDS, PTSD, and POTS added to my disabilities. After requesting the review I discovered that the review meeting the LAC had arranged was in fact not a review meeting, as he had not read any of the evidence provided, and that he just wanted to have a chat. This was finally fixed and my review submitted. On the day of the meeting we did not have the LAC we were expecting, the one we had told me that NDIS wouldn’t recognise my physical disabilities as NDIS never covers them. When I told her I knew of people who had them listed she told me that I was being lied to or I was lying to her. From her the meeting rapidly went downhill as she rebutted everything I said with “but that’s not autism” or “what would that even look like at your age” or “that’s not a disability thing that’s medical”, she did not record my answers correctly and informed me that my funding would not reflect what I had hoped for.

When I got the new plan my funding had been cut by nearly 40% and I didn’t have access to all my needed therapies, greatly increasing my risk of harm and rapid deterioration. When I emailed the LAC to query everything (the grounds of EDS rejection, how they made the decision to cut funding, why certain things weren’t included in plan etc) this was the response that came through, a response clearly not intended to be sent to me and that was incredibly hurtful.

RE: plan has been approved

[SEC=UNOFFICIAL]

Hi

I’m forwarding this email that I just received from just wondering if I can handball her as she is driving me crazy. I will email her back with some advice on how to obtain more evidence, but as you can see she is not listening to the previous information I have given her. I will let her know she can contact the agency to request a review as she is obviously not happy about the review decision, and go from there. Just wanted to keep you in the loop with this one.

Kind regards,

Local Area Coordinator

RE: plan has bee approved [SEC=UNOFFICIAL]

HI

| apologise for you receiving the previous email, | want to just say that this whole process has been very frustrating for both of us.

| can only include ASD supports in your current plan based on the evidence in front of me. | am happy to go forward to request a review on your behalf and would also like to ask if you would prefer my program manager to support you. Please let me know if this is what you would prefer.

Kind Regards

Local Area Coordinator

• NDIS had cut my funding for a support coordinator, so I was left struggling to understand and manage the cuts to funding on my own. The LAC had told me to ask her any questions, but very clearly this was not what she really meant. Not only were none of my physical disabilities recognised, LAC stated that it’s because they’re medical in nature, but I lost a substantial amount of funding because they disagreed that my autism needed the original funded amount and did not record my answer’s accurately.

• NDIS eligibility clearly states that permanent medical conditions, that result in permanent impaired functioning and disability, will be eligible. They also cut my funding for psychology, telling me to get a mental health care plan.. when I pointed out that a MHCP is fit mental illness (and that better access website clearly states the conditions covered) and autism is not recognised the LAC rolled her eyes and told me that hundreds of people get a MHCP for autism and that it didn’t matter what was covered. With both the medical eligibility and MHCP my LAC told me that this was not true and I was not getting correct information or I was lying.

• I am now at increased risk of deterioration and harm, meaning that my functioning will continue to decline until I can no longer remain independent. My LAC was of no assistance with what evidence she sent to the assessor’s or explaining the reason it was rejected (considering medical was not correct like she claimed), it’s reached the point that I’m doubting she even sent the evidence and made the decision that hEDS and the others would not be included herself. I have no confidence that this plan was written with the intent to support me, or ensure my safety and independence, after reading this email the LAC accidentally sent me. If anything I feel like she has gone out of her way to find ways to cut my funding as she has found me frustrating to deal with, she does not appear to have any understanding of how detrimental her decisions have been or any understanding of autism. For her to state that the review has been frustrating for her completely dismisses the fact that I have sat through NDIS scrutinising my life and disabilities and then deciding to slash my funding and take my ability to be independent and safe in my life away from me. I’m now trying to prepare a review, and change in services due to funding cuts, without any support coordination and with a LAC who I have very little faith in her understanding of disability and knowledge of NDIS given how she has approached my review and how she has communicated with (and about) me.

• This whole process has had significant affects on my mental health. Being at the mercy of someone else deciding whether you are “worthy” of accessing support, and then having those same people demonstrate their lack of knowledge and professional, is degrading. Knowing that these decisions are going to result in me declining in my functioning and losing independence, is greatly impacting mental health and my trust in a system that is supposedly there to help.

• NDIS needs to be ensuring that LACs are highly trained professionals, ideally allied health professionals, with a comprehensive understanding of functional impairments and disabilities. At the moment LACs seem to be the stumbling block for people accessing the funding and supports that they require, NDIS is failing us when we need it most. These hurdles to prove your disability are making it impossible for some to access support, the lack of knowledge amongst NDIS staff means that people aren’t getting adequate funding, and people are falling through the cracks.