To whom it may concern,

Our unfortunate journey with NDIS thus far has been characterised by frustration and despair in attempting to cope with NDIS while also coping with the urgent needs of my disabled wife. At this point, we have received nil assistance from NDIS after an application process that began around April 2022 when I first downloaded the application documents.

My wife has been diagnosed with early dementia at the age of 56. I am her NDIS nominee and sole carer. We live in regional Qld. The day to day problems encountered by my wife and I include: falls, intermittent complete physical incapacity, falls from bed, inability to swallow solid food, constipation, hallucinations, fatigue, some cognitive impairment. Incidentally, I am aged 70 and have also been diagnosed with a terminal illness that limits my physical capability.

To the Terms of reference: Re: TOR a. the capability and culture.. Our overall impression is that the NDIA has created a bureaucratic monster that is mostly concerned with the welfare and prosperity of those employed by or contracted by the system rather than the welfare and health of applicants.

Re: culture The language employed by NDIA is turgid, difficult to understand, and specific only to the NDIA. For example, I first downloaded the ‘Access’ forms (why not ‘Application’ form) around March or April 2022 but put it aside because I failed to understand the language, what was required, and who needed to fill out each section. I still struggle with the NDIS language. Surely the NDIS language is a barrier to access?

As the sole carer and husband of the NDIS client, it seems that the urgency of her needs is completely incompatible with the NDIA primary concern of ‘right’ (even if foreign to me) language, slow bureaucratic processes with lengthy times allowed by NDIA themselves for them to make their decisions, preoccupation with bureaucratic procedures and processes at the cost of delivering services to people in real immediate need, over assessment of needs that are in plain sight, and comfortable refusal of service if the right template is not used or on some other triviality. Just where does the immediate needs of the client as defined by the client in simple language get a look in? For example, our priority and urgent need while I have the capacity to care for my wife is simple equipment. Does she need a physiotherapy assessment for a recumbent exercise bicycle with guard rails to prevent falls as already sold to other NDIS participants? Really? Whose need does this serve? The physio gets a hefty fee, the bureaucracy makes work for itself, any putative legal liability is duck shoved to the physio, but my wife still does not have a needed item of equipment after all this time.Does my wife need another OT assessment for a low bed on the ‘right’ form when an assessment has already been done? Why did an OT need to make the assessment anyway because it’s not disputed that the large bruises on my wifes back are the result of falling out of bed. Similarly, does she need yet another OT assessment this time on the right form to justify the need for a wheelchair? A wheelie walker? A commode? What are we supposed to do while we wait for NDIS to satisfy its own bureaucratic needs that are completely irrelevant to my wife’s needs? Who benefits from

Re: the processes and procedures

The application process is slow, alien to everyday life, overly bureaucratic. This process is a massive imposition on many clients and carers at a time of life or in a situation that is already overwhelming.

When professional help was found to assist in filling out the documents, then the process still took months. Many allied health and medical staff of Qld Health played a part in assessing my wife, and writing reports that were included in the ‘Access’ request. This eventually led to the application being approved by NDIA, and several weeks went by before our ‘Planning’ meeting. Some weeks after that we were notified that our plan had been funded, at least in part. Unfortunately, the part that was funded included funds to employ workers, which is the least urgent part of our application, and the tools urgently needed to care for my wife (the ‘Assisted Technology’ of low bed, wheel chair, wheelie walker) was not funded pending yet further assessment!

At that point we were told to wait for contact from NDIA and Carers Qld. Unfortunately after two weeks this was still not forthcoming. Phone calls to these bodies went unanswered and messages left did not get a response. After two weeks I started visiting offices. This resulted in some activity and some communication but still no actual assistance in our home.

We then visited a local store for mobility equipment, with an OT as prescribed by NDIS, and chose suitable equipment. The quotation and OT reports were submitted to NDIA, in expectation that this would be sufficient to allow the equipment to be purchased. Over the next few weeks several inquiries to Carers Qld or NDIS revealed that this quote and associated OT report could not be found. The quote and report were resubmitted at least t hree times to NDIA before someone in Carers Qld found them on the NDIA web site. We are still waiting on approval from NDIA to purchase these items. Today I was informed by Carers Qld that the assessments submitted by the OT and other allied health professionals were not acceptable ‘because they are not on the correct template’.

While NDIA did fund the cost of leasing equipment, the equipment available for lease does not include any of the items chosen by my wife and the OT.

A separate attempt to purchase a commode chair on wheels from the incidental equipment purchase fund for items less than $1500 - necessary because both my wife and I had fallen the night before not for the first time while I was trying to get her from lounge chair to toilet and then bed - was rebuffed by the shop because they needed the funds to be paid into their account before the purchase could be made and then the item would take several weeks to be delivered from Sydney. The equipment was in the store but not available for purchase. The staff were contemptuous. We have a plan manager who was not contacted to find if the funds were available although their contact details were provided. In our regional centre, the equipment supplier has a monopoly having bought out the only other former supplier of equipment. Other NDIS clients report similar experiences with this shop.

I’ll stop here although I could write much more, none of it congratulatory to NDIS or the broader system it has created.

In a summary of the problems encountered so far, our overwhelming impression is that the NDIS legislation has spawned a universe of beneficiaries that only marginally included ‘participants’. Whatever assistance we have received so far has come from doctors and

• allied health staff at Qld Health, not from NDIS. NDIS has just added to our burden, not relieved it.

• I don’t have a complete solution, but part of the solution seems to be to devolve responsibility and budgets to the clients themselves where the client or nominee has capacity to administer that. Perhaps a system of vouchers for some clients? Light touch for some and more involvement for others?

• A second suggestion might be to identify where assessment adds value (rather than just shifts risk) when the clients needs are in plain sight.