Ann Marie Smith and NDIS Participant Safety: It’s Time To Action Change

The case of Ann Marie Smith – and more broadly NDIS Participant Safety – continues to make news headlines around the country and shine light on one of the darkest parts of the disability sector. A case so horrific that it terrifies others due to how perfectly replicable it is. How easily a system designed to protect vulnerable Australians like Ann Marie Smith failed her for so long.

And yet we are still left with questions that have no answers.

Why did Ann Marie’s carer, the person trusted to provide her with the daily support she required, sit by day in and day out watching her suffer and do nothing to help?

Her carer has since been charged with manslaughter, but it’s difficult to understand how they could let another human being live in conditions that police have described as nothing short of degrading.

How could the organisation engaged to provide her disability supports not have appropriate systems in place to safeguard the wellbeing of participants, such as processes to conduct basic employment clearances and supervise workers, when they are a registered NDIS Provider?

Ann Marie’s disability support provider has shown a complete lack of disregard for her wellbeing and safety and since news of her tragic – yet preventable – death hit news headlines, their actions have only appeared to be trying to cover themselves.

It has been reported that 33 submissions for required employment clearances were lodged in the aftermath of Ann-Marie’s death from her disability support provider. That means 33 workers have potentially been supporting other people with disability or older people, without being screened to undertake such work.

Furthermore, it was not Ann Marie Smith’s disability support provider who reported her death to the NDIS Quality and Safeguards Commission; a requirement that all registered NDIS providers are supposed to undertake within 24 hours of a person passing away. The provider has since been issued with a $12,600 infringement notice for this failure.

$12,600. Frankly, I’m extremely disappointed.

There are 525,600 minutes in one year. Even if you allocated $1 per minute in infringement fines for the pain and suffering Ann-Marie experienced, this infringement notice would only cover just shy of 9 days of Ann-Marie’s life. What about the other 356 days?

What about the other reported compliance issues relating to participant safety that also warranted a compliance notice from the NDIS Quality and Safeguards Commission? In August 2020, Ann-Marie’s disability support provider had its NDIS registration status revoked and was issued a banning order. Whilst this action is warranted, correct and a step in the right direction, why it took 4 months for this to occur remains unanswered. That’s another 4 months of other NDIS Participants’ safety being put at risk.

The Safeguarding Task Force, which was established on 21 May in response to Ann-Marie’s death, released their final report on 31 July.

The final report found the following fourteen Safeguarding Gaps:

1. Potentially vulnerable participants are not routinely identified and assigned ongoing support coordination in their NDIS Plan;
2. The support coordinator can be from the same agency that provides other core services for the individual, creating a conflict of interest;
3. Participants are not routinely linked to community activities, so they are often isolated;
4. Participants are not identified as potentially vulnerable by the NDIA and prioritised by LAC [Local Area Coordinators] when carrying out the community connection role;
5. NDIS plans do not routinely include strategies to minimise participant risk, for example, coordination of health care (including dental, sexual and mental health), technology to aid independence and safety, capacity building for asserting rights, and recognition of cultural matters;
6. Participants and their families are unclear about how to raise matters of concern with the Commission and the Commission does not routinely undertake proactive inspections to vet the performance of service providers;
7. The NDIS Quality and Safeguards Commission does not adequately consider the risk factors associated with the use of unregistered providers of personal support, particularly for potentially vulnerable participants;
8. The Commission does not explicitly require of all providers of personal support that there be at least two support workers for that individual (not necessarily at the same time) and that workers in participants’ homes have regular supervision;
9. Regular health checks are not routinely made available to all vulnerable NDIS participants and their NDIS plan does not routinely include coordination of their health care;
10. There is currently no State agency to report abuse and neglect of vulnerable adults under 65 years of age;
11. The DHS Screening Unit is not quickly and fully provided with relevant information by the Commission, the NDIA and some State agencies, compromising the availability of information on an individual worker that might affect their suitability to work with people with disabilities;
12. The commencement of the NDIS Quality and Safeguards Commissions on 1 July 2018 in South Australia has created issues with the scope of the Community Visitor Scheme;
13. State and local government agencies have not yet invested sufficiently in achieving the goals of the Disability Inclusion Act 2018; and
14. State has not invested in individual advocacy to assist people with disabilities to navigate the service system and the community.

Fourteen may not sound like a big number but when you actually sit and review these safeguarding gaps and start to link them together, then apply them to vulnerable people like Ann Marie Smith, it paints a picture of the significantly flawed current systems we have in place designed to protect people with disability. This report highlights safeguarding gaps at both a State and Federal Government level and notes that there is no magic wand approach to addressing these gaps: there is no single approach that can be taken that will address all the issues identified.

The safeguarding gaps represent a set of systemic issues that range from lack of processes to identify and provide ongoing support to vulnerable NDIS participants, the complex nature of the current NDIS Quality and Safeguards Commission’s complaints process (potentially resulting in complaints or warnings being missed), the lack of overall oversight on providers from the NDIS Quality and Safeguards Commission and a lack of processes to ensure vulnerable people with disability receive regular health checks.

In response to the identified fourteen safeguarding gaps, the Safeguarding Task Force has made seven recommendations:

1. The State Government communicate matters raised in the report to the Commonwealth Government, with special reference to the identified safeguarding gaps 1-9, with the intention of seeking a response on how these gaps must be addressed as soon as possible;
2. The State Government address the need for vulnerable NDIS participants to have regular health checks and include communicating to the Commonwealth Department of Health (in response to safeguarding gap 9);;
3. The State Government extend the scope of the [South Australian] Adult Safeguarding Unit to include younger adults at risk of abuse prior to 2022, starting with people with disability (in response to safeguarding gap 10);
4. DHS revisit the [South Australian] information sharing guidelines as they impact on the screening on workers, and in particular, the availability of relevant information from the Commonwealth (in response to safeguarding gap 11);
5. The State Government reaffirm the value of a community visitor scheme as an additional safeguard for potentially vulnerable participants and work with the Commonwealth to establish a complementary scheme (in response to safeguarding gap 12);
6. State and Local Government agencies provide better access and inclusion for people with disability so they can fully participate in society and the community (in response to safeguarding gap 13); and
7. The State Government invest in individual advocacy to assist individuals with accessing what they need from the NDIS and the community (in response to safeguarding gap 14).

While the findings of this report are difficult to digest, it sheds light on the issues people with disability experience everyday and offers recommended actions that both State and Federal Governments need to take to begin addressing these.

The recommendations have also set out clear actions required by the State Government, providing some transparency of the issues within the state system and how they could begin to be addressed.

The report concludes that essentially, due to the insurance-based nature of the NDIS, in practice it does not take responsibility for participant safety – and that “the risk and responsibility is deemed to lie with the individual participant”. It also states that ““the best safeguard for any potentially vulnerable individual is to have a number of people in their lives, who make sure the person is not left to their own devices when things go wrong.”

That doesn’t sit well with me.

Essentially, the report is stating that in the current system, both Federal and State, a vulnerable person is responsible for their own safety and well-being – and needs a large a number of people in their support network to help keep them safe.

I’m sure I don’t need to spell out how far from reality that situation can be for many people with disability.

And yet, despite the report’s findings, there is no clear plan of action from here. In particular, given the NDIA and the NDIS Quality and Safeguards Commission are both Federal Government agencies, I would have expected at least some further action to have been taken by this point in time. The largest two organisations in the country responsible for disability support funding and the protection of people with disability have taken no visible action to change the systemic issues that caused Ann Marie’s death.

I understand the time-pressures, KPI’s, immense workloads and sometimes difficult working conditions that the people working for these agencies experience everyday they go to work. But it’s the Frameworks and top-level policies and processes that dictate how these agencies are run; how these workers are required to do their job. Change needs to come from the top before it can impact the everyday lives of people with disability.

Essentially, the burden of action now lies with the Commonwealth Government to address the issues presented and create change.

I do acknowledge the Commonwealth Government has recently accepted all of the 29 recommendations made by the Tune Review, relating to amending current legislation to support introduction of a Participant Service Guarantee as well as a number of operational reforms. The Review itself acknowledged actions the Commonwealth Government and the NDIA have already taken to improve the experience of NDIS Participants.

I also understand the time-pressures, KPI’s, immense workloads and sometimes difficult working conditions that the people working for the NDIA and NDIS Commission experience everyday they go to work. But it’s the Frameworks and top-level policies and processes that dictate how these agencies are run; how these workers are required to do their job. Change needs to come from the top before it can impact the everyday lives of people with disability. And further visible change is greatly needed to assure Australians that meaningful action within the sector is being taken.

Martin Luther King Jr said: “Darkness cannot drive out darkness: only light can do that”. My only hope is that the Commonwealth and State Governments work together to bring some light to a sector that is slowly fading into darkness.