Smith died in hospital on April 6 from septic shock, multiple organ failure, severe ulcerated and infected tissue and malnourishment which developed at her Kensington Gardens home.
Smith had been assigned a single paid carer by NDIS-administered non-government organisation Integrity Care SA, but SA police said the 54-year-old woman with cerebral palsy spent 24-hours a day for more than a year sitting in a chair, with little food in the house.
Smith was previously under the care of state-run Disability SA, but was transferred to the federal NDIS in 2018, with SA agencies no longer having responsibility for her.
Police have declared her “disgusting and degrading” death a major crime and launched a manslaughter investigation, while state and federal inquiries are about to begin.
On Tuesday, Human Services Minister Michelle Lensink said Smith’s paid carer had worked for years for Integrity Care SA without the proper State Government screening checks and approval – despite unproven allegations of theft and being stopped from working with Domiciliary Care in 2013.
Integrity Care SA sacked the paid carer only after police publicly revealed the death on May 15, despite not telling the NDIS about it as required.
A State Government-appointed taskforce set up to examine gaps between state and federal care is due to meet today, while the the federal government yesterday appointed former Federal Court judge Alan Robertson to conduct an independent investigation into the adequacy of NDIS supports and services provided to Smith.
Cassie Day, founder of South Australian NDIS support coordinator The Carer’s Place, said a key issue which needed to be addressed was why Smith was only allocated one paid care worker.
“I can’t see that one person can be responsible for the care of someone like Ann-Marie without having sick leave, without having annual leave, without having anybody else going into her home,” Day told InDaily.
“To have one carer and no one else involved, raises huge red flags for me. And I don’t believe that it is just the carer that is at fault here.
“This organisation … have a significant responsibility … and I was sickened when I saw their statement separating themselves from the carer. They have a huge responsibility and for the NDIS to give them a $12,600 fine for breaching not reporting her death is an absolute joke.”
Human Services Department acting chief Lois Boswell on Monday told a Parliamentary committee that it was “horrendous and unthinkable” that Integrity Care SA rostered a single paid carer for Smith’s full-time needs.
“The circumstances of this are the first we’ve ever heard; where one person was the only one providing care to someone who needed it seven days a week,” she said.
“Any responsible provider would know that doesn’t appear to be possible.
“There has clearly been safeguarding failures for Ann-Marie, and these may have occurred over a number of years.”
Maurice Corcoran, the former Principal Community Visitor of SA’s Community Visitor Scheme, said he, like other disability advocates, was “really puzzled that she only had one support worker.”
“If she was required six hours a day, for seven days a week, it’s highly unusual to only have one support worker … and not good practise.
“At the very least, there should have been a team of at least two or three people who were familiar with her care needs and could cover for sick days and holidays.”
Day said that while people with cerebral palsy had different needs, someone with severe mobility complications would most likely require constant care.
“Someone with complex care needs would require a team of between eight and 10 people … on a rotating roster and that are also able to fulfil last minute cancellations or gaps of if someone is sick,” she said.
“We (The Carers Place) have a number of clients with complex needs … and there will be a team and that team will be trained on how to care specifically for that person.
“There should be care plans in place … to help carers do their job properly. That includes things like medication, that includes handling, personal care routine and hygiene and all of those sorts of things.”
Day said Smith’s death highlighted the “massive multi-system failure” within the disability sector – particularly relating to the NDIS’s escalating risk provisions.
Smith said her team received at least one complaint, including abuse and neglect, insufficient support and risk of homelessness, every couple of weeks.
She said trying to escalate concerns of risk with the NDIA was “exhausting and dangerous”.
“It’s not until you jump up and down, and scream and yell, and get MPs and ministers involved that anything happens,” Day said.
“I’m dealing with one now and it took eight weeks to get an NDIA complex planner involved.”
Day said her most recent case involved a girl who had been placed in a care facility after her parents were no longer able to provide her the level of support required.
While under the care of the South Australian facility, the girl’s parents were allegedly advised not to see their child for the first six months of her placement “to help her settle into her new home”.
“She was pining for her mother and her father and no one contacted them – no one told them,” Day said.
“It got to the point that this young lady was removed from care by her parents and I called them (the NDIA) and said: ‘This girl is in crisis. She’s in extreme danger. She’s hurting her family, she’s hurting herself, stripping herself off and running around, what can you do?’
“She ended up in hospital for six weeks. The actions ended up with her having such a meltdown and violent episode that she ended up sectioned and in hospital for six weeks, and we are dealing with the fallout of that right now – that is just one.”
Disability Advocacy and Complaints Service of South Australia acting program manager Maggie Rutjens told InDaily that Smith may have chosen to have one carer under her NDIS plan, but it would be “unusual” for someone with a severe disability.
“There are different circumstances and ways a person’s NDIS money can be managed,” Rutjens said.
“People who self-manage, sometimes do that in order to be very selective about the support workers that they hire … but I don’t suspect that that’s the case in this instance because the support worker belonged to an established, larger disability service provider who had multiple contacts with other agencies.
“That can reflect poor safeguarding, because if only one person is trained in how to look after Ann, and that one person is away, then you’re subjecting someone like Ann to the risk where a person might not have any knowledge of the person’s care needs.”
For Day and families and carers of people with disabilities, learning of her neglect and death was like watching “our biggest fear playing out in front of us, in real life”.
“We all have the huge fears as we get older and we have children we care for: what’s going to happen to them when I pass away? Or when I can’t care for them anymore? What’s going to happen?” she said.
“And as much as people, like our organisation, say, ‘let’s setup plans, let’s put emergency management plans in place.’ How do we trust that that’s going to actually happen and our loved ones will be taken care of?
“How can we pass over the reins to anyone else? How can we trust anyone when people – and the systems we have in place – just don’t support that transitions from being an informal carer … and handing that over to a system that is clearly inadequate?”
A spokesperson for the NDIS Commission said, “all NDIS providers and workers have clear obligations under the NDIS Code of Conduct. Providers are required to be registered with the NDIS Commission, they must also meet the Conditions of Registration.”
“The NDIS Commission requires all providers to manage the risk of support delivery to NDIS participants, relative to the types of supports being provided,” the spokesperson said.
“The NDIS Commission has broad powers to take compliance and enforcement action when NDIS providers are found not to have met their obligations under the NDIS Act 2013.”
The spokesperson said it used complaints and regulatory intelligence from a range of sources and anyone could make a complaint to the NDIS Commission about NDIS supports and services, including raising concerns about the wellbeing of an NDIS participant.
However, Opposition Human Services spokeswoman Nat Cook said Smith’s original NDIS plan should have reflected her needs through a range of workers to provide care, support, advocacy and oversight.
“It is absolutely impossible for one person to provide comprehensive care and support for hygiene, nutrition, household tasks, social contact and more every day of the week for 365 days a year,” Cook said.
“Support for people with complex needs must occur across the whole day not in one block. It is impossible for one person to do this.”
“Multiple people needed to be supporting Ann-Marie. It was contingent on the provider and the NDIS to review and oversee the care needs in person. Who else went into this home?”
Cook said Smith had been further let down by a state government decision not to broaden the Community Visitor Scheme despite sector appeals and a report recommending states include home visits as part of independent monitoring of clients and NDIS-administered agencies.
But Human Services Minister Michelle Lensink said it was “clear Labor does not understand the NDIS or the CVS (Community Visitor Scheme) and how it operated under them.”
“The former state Labor Government signed the NDIS bilateral agreement with the Commonwealth and could have considered any potential systemic gaps or issues for clients before they entered into that agreement – but did not,” she said.
Lensink said that while the scheme was still in place, it had never had a role in visiting people in their private homes.
“The CVS continues to visit people living with disability in State Government operated facilities and has the power to visit any NDIS client under guardianship in non-government organisations,” Lensink said.
“The role of the CVS continues to evolve and in October last year, the Marshall Liberal Government expanded the CVS role to include our most vulnerable South Australians who are under the guardianship of the Public Advocate.
“There have been no legislative changes to exclude people from the scheme.”
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