Don Farrell (SA, Australian Labor Party, Shadow Special Minister of State) Share this | Hansard source

Mr President, as I think this is the first time I've had an opportunity to congratulate you on your recent appointment, I wish you all the very best in the role.

I rise to speak on the National Disability Insurance Scheme Amendment (Improving Supports for At Risk Participants) Bill 2021. This bill is in response to the very tragic death of Ms Ann-Marie Smith in April last year, which all South Australians will be aware of. As all in this chamber will recall, Ann-Marie Smith was a 50-year-old Adelaide NDIS participant who died on 6 April of severe septic shock, multiple organ failure, severe pressure sores, malnutrition and issues connected with her cerebral palsy after being confined to a cane chair, 24 hours a day, for more than 12 months. Ann-Marie Smith's NDIS package included six hours of support per day. Reports are that she only received two hours of care per day and had not been seen outside her house in years.

Her death shocked Australians, and rightfully so. Australians were left wondering how this could happen and where the system failed her so terribly. Following pressure from the community as well as Labor's shadow minister—and South Australian shadow minister—the Morrison government were forced to undertake a review into the circumstances of Ann-Marie's death.

While Labor had being calling for an independent inquiry into the NDIS safeguarding, the government had tasked Federal Court Justice Alan Robertson with reviewing the adequacy of the regulations of the supports and services provided to Ms Ann-Marie Smith. This review did not have statutory powers and submissions were not made public. In addition, there was no wider sector or parliamentary engagement communicated by the government into the Robertson review, evidence-gathering process and the development of the bill. The review held a number of meetings in Adelaide on 20 and 21 July 2020 with those who provided a submission or an outline of what they wished to say.

When released, the report stated that it does not identify any failings in how the NDIS Quality and Safeguards Commission carried out its functions around Ann-Marie Smith's death. The review found that there was no wrongdoing when the commission, which is set up to protect NDIS participants, issued, firstly, a fine of $12,600, for failing to notify the commission of Annie's death within 24 hours, a month and a half after she died. As far as we know, this is the only fine the commission has issued against a provider since it was set up in 2018. Secondly, there was a banning order on the provider Integrity Care four months after she died. We know now that this was the only infringement the commission had ever issued, in two years of operation. A year later there have been only a handful more.

In the course of the review, Mr Robertson did take the opportunity to consider wider issues of safeguarding of people with disability who are particularly vulnerable. The report highlights buck-passing between the NDIA and the NDIS Quality and Safeguards Commission. The problem is that the NDIS commission only regulates providers and that the NDIA is set up to administer the scheme to participants. Robertson says that the two agencies are not sharing information and people could easily fall through the cracks of patchy oversight.

The Robertson review and some of the recommendations appear to have merit, including those around greater communications between the NDIA and the NDIS Quality and Safeguards Commission. Between Robertson's recommendation and this bill, there has been no meaningful consultation with disability stakeholders as to whether, in their lived experience, these reforms will be effective, in practice, or whether more or other recommendations from the review should have been legislated.

In the absence of proper and meaningful engagement, the bill was sent to the Senate inquiry for review. The inquiry raised a number of issues with the bill. The first of these was a lack of consultation with people with disability as part of the drafting of the bill. People with disability and stakeholders, including DROs and the state and territory governments, were not included at any stage in the process to draft the legislation.

The absence of direct consultation with people with disability is concerning, because the displacement of people with disability from involvement in decisions about their lives directly contradicts the core person centred principle of the NDIS. It's part of the reason why people such as Ann-Marie Smith are frequently put in situations that place them at risk.

In addition, there were concerns raised about the information sharing positions and the unintended risk this posed to participants who would have the information shared without consent. In its current form the bill does not have a requirement for the NDIA or the commission to seek the consent of a participant or notify them that their personal information has been recorded, shared and used for the purposes of safeguarding. The threshold for recording, sharing and using participant information for the purposes of this bill has also been lowered. Stakeholders were concerned about the situation where the commission and the NDIA staff are able to make critical decisions about people's lives and their information without clear processes for ensuring that the privacy rights of the individual whose information is being shared is being protected. Both the issues around the consultation and privacy are significant.

While the report recommended passing the bill, Labor senators noted the unresolved concern of the stakeholders. These concerns are the subject of some sensible amendments put forward to this bill today and which I hope will have the support of all in this chamber. Fundamentally, Labor welcomes the Morrison government's decision to act on the recommendations of the Robertson's review, even if it's taken 12 months since former Judge Alan Robertson handed down his report and 16 months after Ann-Marie Smith passed away. However, Labor also notes the lack of consultation and continuing failure of the Morrison government to consult people with disability on changes which directly impact their lives. That being said, Labor believes everything possible should be done to protect people with disability from neglect and abuse.

While the bill does not address gaping holes in the NDIS safeguarding, such as the lack of proactive checking on service providers and an ineffective and understaffed NDIS commission, it is supported. The concerns of stakeholders and the people with disability in relation to privacy and information sharing have not gone unheard. Labor recognises the right to privacy is just as important as the need to protect. That's why Labor will join with the Greens in moving amendments in the Senate to ensure that there is a proper process for the disclosure of participant information.

In addition, Labor, along with the Greens, will be moving amendments to ensure that all of these concerns are able to be looked at in detail as part of the review of the NDIS safeguarding expected later this year, which will involve close consultation with stakeholders and people with disability. These amendments will seek to ensure that if the government fails to conduct a review the bill will cease to operate. These are important amendments, and I hope that all senators will give consideration to supporting them.

Ann-Marie Smith's terrible demise was nothing short of a tragedy; she should be alive and thriving. Instead she was neglected, abandoned and died. And devastatingly we know that this is not an isolated case. We have a duty of care to ensure that vulnerable people receive the care and support they need, and we must do all we can to prevent tragedies like this ever occurring again. As such, Labor supports the bill.