NDIS is failing remote communities

14 November 2019

Malarndirri McCarthy speech to the Senate - National Disability Insurance Scheme Amendment Bill

I rise to speak on this important bill, the National Disability Insurance Scheme Amendment (Streamlined Governance) Bill 2019. This legislation amends the National Disability Insurance Scheme Act 2013 governance arrangements between the Commonwealth and states and territories regarding rule-making and decision-making under the NDIS Act. I'm pleased to see the government's amendment to the bill to ensure that the disability royal commission has the power to access information and data from the National Disability Insurance Agency and the NDIS Quality and Safeguards Commission. Labor is seeking a further amendment to defer consideration of the bill until after the findings and recommendations of the current review of the NDIS are publicly released.

On 12 August 2019, the government announced a review of the NDIS Act undertaken by David Tune AO, PSM. The Tune review is due to report at the end of 2019, with scope to consider governance arrangements through the terms of reference. These include opportunities to amend the NDIS Act to remove process impediments and increase the efficiency of the scheme's administration, implement a new NDIS participant service guarantee and any other matter relevant to the general operation of the NDIS Act in supporting positive participant and provider experiences.

This bill was referred to the Senate Community Affairs Committee, and a public hearing was held on 30 August. Disability groups that appeared at the public hearing on 30 August had the opportunity to provide feedback on the bill. They raised concerns the proposed consultation requirements would undermine the equal partnership of the Commonwealth, states and territories underpinning the NDIS. They also said that characterisation of states and territories as host jurisdictions in the bill misrepresents and underestimates the role of the jurisdictions under the current full-scheme arrangement.

Disability advocates also objected to the timing of the bill in relation to the Tune review, recommending that any governance changes should be postponed until the review is complete. If the government is serious about the current review, it should wait until the Tune review is complete before this bill is passed. The NDIS Act and rules should be considered alongside any findings that may impact governance arrangements and the broader policy context. This cavalier and ad hoc response to NDIS policy has resulted in people falling through the cracks as the NDIS is rolled out.

The government has ripped $4.6 billion out of the system, leaving people with disability and those who care for them without the support they need, all so they can prop up their budget, and it is at the expense of Australians with disability and their families and carers. We've seen examples of thisthe wheelchair-bound man who was told he wasn't disabled enough and the woman with spinal muscular atrophy who had to run a GoFundMe campaign so she could transport herself to university. There are also those people who are impacted by the coalition's cuts and maladministration who are out of sight and out of mind. There are families and children living in remote communities in the Northern Territory who, despite severe levels of disability and chronic need, have not been able to draw down one cent of their package. There is little to no assistance given to people in these circumstances to access their packageswho they need to call and how to organise the services they so desperately need. In many cases there is simply no service provider available.

The complexity, restrictions and bureaucracy around NDIS policies are excluding some of the most severely disadvantaged people from accessing the scheme. Managing the process online is a barrier to many in remote areas where digital access isn't guaranteed. There is a severe lack of providers in the bush, and the burden of care often falls on family members and loved ones. Self-managing an NDIS package is far from a simple process. Add to this the issue, as I said, with digital access. I remind the Senate that English is a second or third language in the Northern Territory, where we have over 100 Aboriginal languages, entrenched poverty and communities where no-one with a NDIS package is drawing down. Grandmothers and mothers and aunties in remote Indigenous communities are caring for loved ones with a disability with no NDIS support because of the barriers to self-management. The restricted practices also don't take into account issues around culture and remoteness. They certainly don't take into account the impacts of entrenched poverty.

In a remote Northern Territory community, a child with cerebral palsy was sleeping on the concrete floor. They did not have a bed, not because their family didn't think the child deserved a comfortable place to sleep but because they could not afford to buy the bed frame and mattress. A child with cerebral palsy needs a bed to sleep in; every child needs a bed to sleep in. But the NDIS would not let the family purchase a bed under their package. The package remains underspent.

A child who is PEG fed through a stomach tube was unable to claim their special formula through their NDIS package. This special formula is costly, and expensive to obtain out bush, and the family was finding it hugely challenging to meet the ongoing costs. A man with cerebral palsy was denied a $200 sunshade for his wheelchair. And the NDIS has no provision for cultural practices such as the use of traditional healers, or ngangkari healers. These healers often work side-by-side with traditional medical practitioners to improve outcomes for First Nations people.

We need cultural supports and brokers in remote communities to assist families and carers to self-manage their funds and to access their entitlements. This would not only assist those with disabilities living in remote regions; it would also result in local jobs in the bush. Come on! It's not hard. Meanwhile, the face of this federal government focuses on, and reflects, a meanness and a neglect when a child with cerebral palsy is sleeping on a concrete floor because his family couldn't afford a bed, which he would be and should be entitled to with his package. This shows how little regard this government has.

Labor will continue to stand up for people with disability and their families by making sure they are in control of their plan through quicker, simpler and easier processes. The NDIS is one of the most important social initiatives that this nation has taken. At full rollout, the scheme will be allocating and be responsible for $22 billion. Labor believes this government should be taking action on the issues that have been identified already by disability services, advocates, other people and families, and of course by NDIS participants, who are living with this government's lack of will or ability to take serious action.

It's clear to everyone that the Tune review will impact on this bill, and we should wait on its findings. That is why Labor is amending this bill to defer further consideration until after the findings and recommendations of the Tune review.