Lists of ‘eligible supports’ could be a backwards step for the NDIS and people with disability

What should or shouldn’t be funded by the National Disability Insurance Scheme?

You might think having a list of things that are “in” or “out” seems like a pragmatic way to contain the costs of the NDIS. But a lengthy government proposed list of exclusions could force people with disability to use more costly services.

It might also exclude people from mainstream services and force them into institutionalised settings such as group homes and respite centres. This is contrary to the intent of the NDIS – to promote the participation and inclusion of people with disability in the community – and Australia’s Disability Strategy.

The government has released draft lists of what NDIS participants can and cannot spend their funding on and opened them for a brief period of public consultation. The interim lists form part of the NDIS reform bill currently before parliament.

While more clarity and guidance on supports may be helpful for NDIS participants, there are risks these lists will lead to worse outcomes. Prescriptive lists can also stymie independence and innovation.

‘Daily living’ items can be better value

Items currently on the “out list” include household appliances, hair salon appointments, rent and utilities. But banning mainstream items and services may lead to poorer outcomes, not just for the person with disability but for the sustainability of the NDIS.

Some of the ruled out items could offer better value for money and better outcomes than those ruled in. As NDIS expert Sam Paior recently told us in the Summer Foundation’s Reasonable & Necessary podcast:

[…] if you’re a participant that can’t wash their own hair but can wash your own body, do you really want a support worker in the shower with you to wash your hair? Why wouldn’t you go to your local hairdresser [where a shampoo might cost as little as $35] instead of having a support worker that costs $70 an hour, in your home looking at you naked in the shower.

There are also times when so-called “daily living” items can reduce downstream costs. For example, subsidising rent in a homeshare arrangement can enable a person to remain in their own home and reduce reliance on paid support.

Just like the government and the general public, most NDIS participants want to see NDIS funding well spent. As an NDIS participant we surveyed as part of our research said:

I had a lot of pressure to get cleaners rather than a robovac to let me do it when I wanted. Same with food prep […] a Thermomix changed my life and made me safe while cooking as the auto function shuts down at the end of each step rather than me forgetting the stovetop is on.

Do the lists tally with the NDIS review?

The NDIS review said the government needs to give clarity to participants about how they can use their funding. It also said operational procedures should be public and the National Disability Insurance Agency (NDIA) accountable by including them in legislation.

But an extensive list of what can and cannot be funded was not recommended. Rather, the review recommended introducing a support needs assessment for a reasonable and necessary budget that could be spent flexibly, with minimal exceptions.

The recently released NDIS Provider and Worker Registration Taskforce advice emphasised the importance of NDIS participants having control over their purchases. This is critical to a human rights-based approach and upholds the rights of people with disabilities to autonomy and self-determination set down by the United Nations.

This advice is consistent with contemporary best practice in disability support, commonly described as “self-directed support” which aims to put people with disability in control of their own lives. It shifts decision-making power from government and service providers to the person with disability.

Read more: Tiered NDIS provider registration and a say on supports. Are we finally listening to people with disability?

Where the NDIS bill is at and what happens next?

The bill to reform and get the NDIS “back on track” is being debated in the Senate this week and the government has put forward further amendments.

These include a process for participants to seek an exemption to purchase supports that are on the “out list” if they are of equal or lesser cost and can provide better outcomes for the participant.

While this is a step in the right direction, a requirement to seek approval for every purchase is likely to be administratively burdensome for participants and the NDIA. A better approach would be to broadly define what may constitute a disability-related support, and then have an “out” list of supports that are illegal, harmful or not beneficial.

There is a short window of time for the disability community to ensure their concerns are heard, with the public consultation process closing August 18.

The government needs to listen carefully to the disability community about the potential unintended consequences of a rigid approach to NDIS supports, and the potential for these lists to drive up costs for the scheme.