Today marks the first anniversary of the deeply troubling death of Ann Marie Smith.
Her death has precipitated a coronial inquiry and manslaughter charges, together with a State Government taskforce that signalled a range of recommendations. One year on, can we be confident the wellbeing of people living with disability is better safeguarded?
Yesterday, Purple Orange released a podcast that suggests the answer is no. The podcast features Nat (not her real name), an NDIS participant with high support needs, unable to move her limbs.
Nat sleeps in her wheelchair most nights each week because she cannot get all the support she needs. This is despite a significant NDIS support budget, the involvement of several service provider agencies, and notifications and complaints to the NDIS Quality and Safeguards Commission. Nat is intelligent, articulate, determined, and connected, yet fearful of speaking up.
If someone like Nat were to become the next Ann Marie Smith, we would not be able to link it to the alleged actions of one support agency or worker. It would be no one’s fault and everyone’s fault.
Nat says there are others in similar situations, which is why she wants to speak up, but only on condition her name is changed and her voice disguised.
Listen to the podcast. It will move you, and you will want something to be done. But what?
First, the disability support industry needs more agencies who understand what it means to build trust, because trust is central to building sustainable, tailored support arrangements. While it is not always wise to place trust in one person when there is no-one else around, in Nat’s case she receives much of her support each week from people she has never met before, a procession of strangers-for-hire who do not get to know Nat or what she needs.
Also, Nat should be able to choose who helps her build her NDIS plan. Other than by phone, Nat has never met her NDIS planner, the person playing a central role in how the NDIS determines the extent of Nat’s support needs and the budget to pay for those supports.
It is hard to place trust in a planner’s judgment if they have never seen how you live.
Second, there must be more oversight and accountability of support agencies (and their staff) who claim they can support clients with high support needs. In Nat’s case, the disability support agencies seem unable to find and train support workers that meet Nat’s requirements, such as her basic wish for women workers to provide her with her most personal care.
Not difficult you would think, given the frontline human services industry tends to attract more women than men. Yet there are times her disability support agencies cannot even meet this.
One of the times we visited Nat, and with her permission, we witnessed a call Nat received from a disability support agency saying they could only send a man that day, and that if Nat wanted support, that was who she was going to get. This reflects a disability support sector where many agencies are struggling to make the transition to an NDIS world where people living with disability are their customers, and should be treated with the respect and responsiveness that relationship should command.
Also, Nat needs workers who are fluent in English. Because of this, at least one disability agency supervisor told Nat she was being racist. Apart from being untrue and offensive, given Nat’s personal and family circumstances have significant cultural diversity, it profoundly misses the point. Nat needs fluent English speakers because she cannot move her arms to gesture and point. She is entirely dependent on the spoken word to instruct her workers. If a worker misunderstands an instruction, this can have catastrophic consequences for Nat. As a result, Nat has become a frequent flyer with the SA Ambulance Service, calling for their assistance when her supports fail and her health is at immediate risk.
Nat has technical aspects to her support needs, and these are best trained in situ, overseen by Nat. But because most of Nat’s supports are provided by workers who are transient in her life, this training does not happen. Many of these support shifts are for Nat a high-risk exercise in self-preservation.
Third, it takes care and effort to build a successful and sustainable set of supports for someone with complex support needs. Key is someone working alongside the person, to build a picture of what the supports should look like, and to get them set up. In the NDIS, this is the Support Coordinator, but the role is not well-defined, practice is highly variable, and availability is not assured. Nat only gets support coordination for around an hour and twenty minutes a week. Not nearly enough, especially given her Support Coordinator is one of the few people she trusts.
Fourth, when things are not right, it is hard for people to speak up because the personal stakes are high, and for Nat this includes a fear she may lose service, or be labelled an ungrateful complainer. We need to invest in safer ways for people to raise their concerns. This includes increasing funding to independent individual advocacy in South Australia. We also need to understand the limits of what the Quality and Safeguards Commission can accomplish, and whether it is sufficient to provide a street-level, streetwise, safeguarding presence.
The sum of all this is Nat spends each day wrangling supports that are largely mediocre, seemingly uninterested and neglectful.
For Nat this is deeply stressful, and chronically exhausting.
Things need to improve for Nat. So, do we group people with complex support needs together in one residential building, served by a critical mass of trained staff? No, because that approach does not deliver a life of safeguarded choice and inclusion, which is what the NDIS is meant to be about.
Do we abandon the NDIS as a failure and try something else? Again no. The NDIS is important and is adding value to many. But it is uneven in its practice and outcomes and struggling to land a participant pathway that works well.
Yet there is reason to be hopeful. Nat’s situation can be greatly improved under the stewardship of the NDIA and the Quality and Safeguards Commission through practical measures that place her at the centre of good planning, good coordination, and in an auditable trusted relationship with a disability support provider that gets it. The state government can and should invest in individual independent advocacy.
And if after listening to the podcast you want to take action, start by looking around you, where you live, where you work, and the other places you spend time. Who there might be isolated, without people in their corner who have their back? For each of us, having kind people in our lives is the most powerful safeguard.
The action you can take starts with ‘hello’.
Robbi Williams is CEO of Purple Orange, an Adelaide disability support agency
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