What would Grandma say?

For $22 billion annually, you might expect a whole lot more from the Agency in terms of its research and how participants, families and the public are involved in such research. The Agency should also have a far more ambitious research agenda, with goals to progressively eliminate or at least ameliorate various forms of disability and chronic illnesses from the human condition. But alas, the day-to-day operational NDIS Rules prevent me from exercising a sufficient risk appetite, to chance any real change in my condition, or anyone else trying to do the same thing. This becomes clear when considering the NDIS Rules, specifically Supports for participants. The conservative and risk-averse nature of the NDIS Agency is underlined by Rules 3.2 and 3.3, which state:

Effective and beneficial and current good practice

3.2 In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to consider the available evidence of the effectiveness of the support for others in like circumstances. That evidence may include:

(a) published and refereed literature and any consensus of expert opinion;

(b) the lived experience of the participant or their carers; or

(c) anything the Agency has learnt through delivery of the NDIS.

3.3 In deciding whether the support will be, or is likely to be, effective and beneficial for a participant, having regard to current good practice, the CEO is to take into account, and if necessary seek, expert opinion.

Some will claim this is due caution and exercise of the precautionary principle. However, it does show who is in charge when it comes to dispensing money: the NDIS Agency and its Chief Executive Officer (CEO). A participant or family who wanted to test a new therapy or product would likely be defeated by this rule; this is particularly when Rule 3.2 (a) seeks not just expert opinion but "any consensus of expert opinion". People will also be declined because of the need to show the effectiveness of a support to others "in like circumstances". If you are trying something truly different and innovative, then there will not be a comparator.

So, there it is - no venture into stem cell research or therapy, no electronic implants and robotics except so far as they might be cost-effective and a disability aid, while not replacing or duplicating an existing or alternative service of lower cost. Cost is such an overriding concern, it has its own Part in the Rules: Risk is always to be avoided according to Part 5 of the Rules, which states:

Part 5 General criteria for supports, and supports that will not be funded or provided

General criteria for supports

5.1 A support will not be provided or funded under the NDIS if: