NDIS – an idea to improve your process

Dear NDIS,

Thank you for my new plan, and the funding you have given me to support my disabilities. However, I am confused by your decisions. I applied for a review of my plan because my circumstances had changed – my disabilities have increased (ie, now I need to use a wheelchair whereas before I didn’t). I was hoping to get some additional support for the areas where I am now struggling.

I understand that in order for you to be confident that these new disabilities are real, you require me to be assessed by an occupational therapist (OT) and by doctors, and for reports to be written about me and my functional capacity.

I must admit I have been shocked at the amount of time and cost involved to do these assessments. I would estimate that over the past year, since I first applied for the review, that the appointments and reading/editing of reports (a separate and very long report for each thing I request you fund) have used up an entire half of my available energy. That’s a LOT. It has been an exhausting and draining process. But I have persisted with it in the hope that eventually I will be set up for this new disability and I can stop focusing on it and instead can focus on getting on with my life.

I have also been a bit shocked that such a large amount of my previous plan had to be spent on the various professionals who have assessed me and written all the reports. I don’t dispute that their time is valuable and should be paid for. But perhaps a condensing of reports would be more efficient, and not requiring quite so much paperwork. It would be less for you to read, as well as taking up less of my time and costing less in OT fees. More of my plan could be spent on stuff that actually supports me.

Given that you spent so much on my OT, I am rather surprised with my new plan that you disregarded her recommendations. What was the point in having her write all those reports if they weren’t going to be heeded? Was this not, perhaps, a waste of taxpayers’ money? And my time? Did you folk at NDIS actually read the reports? Because the plan you gave me doesn’t seem to reflect anything in the reports about my specific circumstances. It seems rather… generic.

I was surprised to see that in some areas where I am struggling the most you actually cut my funding, rather than increasing it, despite my disability increasing. Does this mean you felt my previous plan was too generous? Does this mean you don’t believe my increased disability needs support? If the report from the OT is not enough to convince you, what would it take? And… why did you require those reports in the first place?

Could I suggest a more efficient system?

You could require a single functional assessment from an OT, which outlines my disabilities and functional capacity. This could be entered into your system and never need to be written about again. Each time a new disability/functional limitation is encountered, it could be added to your database, along with details about how this affects a person.

Let’s give an example of Deafness. Deafness affects different people in different ways, and no two Deaf people are the same. But there are some broad categories that inform the types of support needed. For example, Deaf people who use Auslan and did not have access to language as young children usually have difficulty with English. A Deaf person with a large amount of difficulty with English and little childhood language access usually finds it very hard to access information in today’s world. For example, such a person might struggle to do a Google search because they cannot read and interpret the results. They might struggle with everyday tasks such as cooking and health management because they have never received adequate education in Auslan in these areas. They might have difficulty understanding subtitles on TV. This could affect their behaviour, making ‘social appropriateness’ difficult when it comes to interacting with the hearing world. Such a person needs significant support to catch up on missed learning areas and help them access and function in our society. Providing an interpreter for social and work occasions doesn’t even come close to providing the type of help people in this situation need.

The average OT that I have met has only a superficial understanding of Deafness, and thus does not realise that they need to enquire about these types of barriers. We Deaf people have been advocating for each other and teaching OTs about our needs, and getting them written into the reports. But it’s an exhausting and draining process, and different Deaf people have different levels of access to advocacy, and varying skills when it comes to self-advocacy, so there are plenty of Deaf people who need additional support to access the world but are not getting it, because they don’t know how to ask for it and their OTs don’t realise it is needed.

For every disability, for every subtle way it affects people that is brought to the attention of the NDIS, this could be entered into a database, so that forevermore, NDIS staff and OTs have access to this information.

It would not be difficult to create a program that OTs and NDIS planners can use which accesses this information and helps inform the types of support. For example, enter ‘Deaf’ and up comes a question about the level of skill with the English language. Depending on the skill level entered, a range of supports are listed, which an OT can select from (and add to if a required support is not listed).

That way, every bit of advocacy that has ever been done for any Deaf person who struggles with English would all be right there in the database, along with explanations and justifications for those who are not familiar with why a certain support relates to a certain disability. As the database expands, we would no longer need to advocate for ourselves.

My new disability, which requires me to use a wheelchair, is orthostatic intolerance (OI) – it means an inability to tolerate being upright. When I stand up, blood is not maintained in my brain, and I feel faint and sick and cannot think. This appears to be a fairly obscure disability, since the wheelchair companies I dealt with did not seem to have encountered my needs before, and thus didn’t know now to accomodate them. My OT, likewise, did not understand. I had to do a lot of educating of the professionals around me, and a lot of correcting of their reports, and a lot of rejecting of their proposed wheelchairs that didn’t meet my needs. My disability is actually a standard thing, well established medically, and the symptoms are outlined in numerous places all over the internet. I assume I am not the first person who has been funded by NDIS for OI. But it would be really good if the information from those who have gone before me was captured and able to be utilised for me. If I am truly the first, then the condition I have described and the ramifications it has on my everyday life should be utilised so that the next person who applies with OI does not have to go through the enormous draining process I have gone through to educate the professionals.

NDIS, by capturing this information, and using it to refine and gradually standardise supports for various disabilities and circumstances, you could make life so much easier for all of us, and so much cheaper for taxpayers too! OTs would only ever need to write a report for a new circumstance that has not yet been encountered in your database.

To assess me, the OT and I could sit down together at a computer, enter the disabilities, and then choose which supports are appropriate for me. A standard amount could be given by NDIS for each of these supports, and if a greater amount is needed, the OT would write a short explanation of why. If NDIS accepts it, that new circumstance with the greater level of support would, of course, then be entered into the database.

Think how much more efficient it would be! Not only that, but once entering our circumstances into the system, we would be given a list of supports we can expect to receive, just like we can receive a tax estimate once we have entered our financial details at tax time. I hope you will consider my suggestion.

In the meantime, I await my appeal and hope that my next plan will be better tailored to my circumstances.

Yours in hope,
Asphyxia

PS. If you like my suggestion, feel free to let NDIS know. Maybe with enough numbers they will listen. You could send an email to feedback@ndis.gov.au and say, ‘I support Asphyxia’s idea of creating a database of disabilities and supports, to reduce costs, reports and the need for self-advocacy.’ Or just email them the image attached to this post. Please share this post with others who may be interested in supporting the concept.