Once she got over the initial shock and horror of her brother David Harris’ death, Leanne Longfellow was desperate for answers. She’s spent the past three years fighting for a full investigation into the failures that led to the isolation and neglect Harris experienced in the final months of his life.
As revealed in a 2019 Crikey investigation, Harris died at the age of 55 shortly after his National Disability Insurance Scheme (NDIS) funding was cut off when his plan expired in April 2019. He had paranoid schizophrenia and relied on support funded through the NDIS to assist him with day-to-day tasks.
New information obtained by Longfellow under freedom of information (FOI) laws has revealed that the NDIS, instead of a third-party organisation, was responsible for contacting Harris to implement a new plan and funding due to the severity of his disabilities. It reached out to him only once — two days after his funding expired — and cancelled a call back with him. It’s likely he died shortly after.
By the time he was found dead on the kitchen floor of his Western Sydney home in July 2019, his body was so decomposed an autopsy couldn’t determine a time or cause of death. One disability support worker and Longfellow, who lives interstate and works as an education consultant as well as cares for her daughter with physical and intellectual disabilities, were the only ones to make inquiries into Harris’ wellbeing.
Longfellow is her brother’s only living relative, his next of kin and nominated carer. These final two titles should enable her access to her brother’s documents. But she’s spent the past three years fighting the NDIS for information, going back and forth with FOI requests, with many rejected or returned in heavily redacted format.
In 2020 Longfellow was told a coronial inquest would take place to investigate the circumstances leading to his death. The two-day inquest has since been cancelled.
“I’m still reeling from the shock of it all,” Longfellow told Crikey. She believes the NDIS is downplaying its role in her brother’s care, arguing a coronal inquest could highlight failures — a process that may help prevent further neglect of other people with disabilities.
New information into Harris’ final months
After two decades of community-based mental health and housing support, in 2016 Harris was transferred to the NDIS. For two years, he also had access to the Granville Community Rehabilitation Services where he saw a psychiatrist and registered nurses checked on him at home a few times a week, though he was discharged in 2018. Why he was discharged is unclear — his schizophrenia had continued to evolve.
Harris was one of the first people placed on the NDIS for psychosocial disabilities. He was expected to coordinate his own care, attend meetings and respond to calls and emails, which Longfellow believes is a failure of the NDIS as some people with mental illness may be incapable of organising appointments while in the grips of depression or psychosis. It’s this failure in the NDIS case management system Longfellow wanted a coroner to investigate.
While a review of the NDIS has been brought forward to take place this year, NDIS Minister Bill Shorten — who criticised the National Disability Insurance Agency (NDIA)’s care of Harris when Crikey’s investigation was released while he was in opposition — has yet to announce changes to case management of participants with psychosocial disabilities.
New documentation obtained under FOI show that concerns were raised in 2018 about Harris by his local area coordinator, who previously managed Harris’ NDIS plan. He had stopped working and wasn’t using all of his available NDIS funding and was restreamed in the “intensive” stream, a higher category of care under the NDIS.
This meant it was up to an NDIA planner, instead of a third-party local area coordinator contracted by the NDIS, to coordinate a new plan with Harris, beginning three months before its expiry. They never did.
A statement provided to the coroner on behalf of the NDIA shows there were no attempts by the NDIA to contact Harris until the day before his plan expired. Unable to reach him, the NDIA sent him a letter and contacted his support workers at Community Connections on April 9, asking them to visit him.
Longfellow said she had initially been led to believe by NDIA staff members during her initial queries that Harris’ phone was shut off. New evidence disputes this.
Harris later called the NDIA on April 17, when he was told his services providers could be reimbursed for their work when a new plan was arranged. He was told he would receive a call back from his NDIA planner. Due to an “administrative error”, the call-back request was closed the next day. Harris was never contacted.
Community Connections continued to contact Harris. They were able to leave a message, though sometimes his phone wouldn’t connect. Longfellow said Harris’ psychosis often became so severe he would live in a tent in his backyard and ignore his phone. Concerned, the organisation contacted the NDIS on April 26 about Harris, but NDIS staff refused to discuss Harris as the support worker wasn’t Harris’ designated plan coordinator.
So, without any contact from the NDIS about his new plan, Harris’ plan expired and his funding was cut off.
How could an inquest be cancelled?
The NDIA implemented a policy after Harris’ death ensuring funding and plans roll over when a new one hasn’t been made. New guidance implemented in April 2019 stipulates that a three-month interim plan also be introduced when three contact attempts had been made within six weeks of the plan review date and if the participant was unable to be contacted.
Deputy state coroner Erin Kennedy ruled that Harris’ death wasn’t associated with the fact he no longer had access to support, saying the NDIA’s decision to extend NDIS plans provided “a satisfactory response” and that “deficiencies and errors which impacted the service and expiration of Mr Harris’ NDIS plan have largely been recognised and addressed”.
This isn’t uncommon: most coronial inquiries result in dispensation.
But Longfellow disagrees that this is sufficient, arguing the documentation she eventually got from the NDIA shows it knew more than it originally let on.
When lodging FOI requests, Longfellow was told she wasn’t allowed to know all the details of Harris’ NDIS funding as disclosure of the material would “reveal methodologies the NDIA uses in determining levels of support provided to [NDIS] participants” and “compromise the financial suitability, integrity and longevity of the NDIS”. Her FOI requests were delayed with time extensions granted by the Office of the Australian Information Commissioner
“I have the legal right to access it and they redact things and they block me and they run me round and round in circles and just make it so hard to get any information,” Longfellow said.
“I’m just bewildered by the whole process.”
NDIS failing those with psychosocial disabilities
Longfellow last week met with Shorten and previously had emailed him about information being withheld. A minister cannot intervene in FOI requests.
“The previous government failed David Harris,” Shorten told Crikey.
“David and his sister Leanne were horrifically let down. They deserved much better.”
An extra $158 million over four years has been allocated in the budget to add 380 permanent staff to the NDIA.
But so far there have been no changes to how people with psychosocial disabilities are managed by the NDIS, or to address Harris’ failed callback. A mental health sector reference group communique, conducted last month, found there is a high level of confusion and misunderstanding around what the NDIA will fund for people with psychosocial disabilities, with the Mental Health Sector Reference Group seeking a meeting with Shorten to brief him on proposed reforms for NDIS participants with psychosocial disabilities.
Longfellow acknowledged that the limited scope of the coronial inquiry may have left her disappointed by its outcome. But, she said, she had hoped it might provide scrutiny over Harris’ circumstances.
“There are some very vocal critics of the NDIS for psychosocial disabilities because some people struggle to advocate for themselves and they need a community-led team rather than private companies,” she said.
“I felt it was all just very poor what happened.”
An NDIA spokesperson told Crikey it has passed its “deepest sympathies” to Harris’ family and friends and “acknowledges their ongoing grief”, but said it couldn’t discuss the matter further as the coronial inquiry is “continuing”. The NSW coroner told Crikey that while the two-day inquest has been vacated, “the matter is still open at this stage and will be reviewed by the coroner in due course”.
Since being contacted by Crikey, new NDIA CEO Rebecca Falkingham has agreed to a meeting with Longfellow.
The fact that Crikey reveals shortcomings like this with the NDIS, and on other occasions, on the behavior of The Public
Trustee, says plenty about the ‘culture’ (if you like) and priorities of this country. Personally, I think that it is a total disgrace.
No! It is calculated abuse.
Yes the Public Trustee here in Perth, had some concerning revelations recently. Nothing seems to have improved since the Crikey investigations.
NDIS can provide great support and services for people with a disability but the ongoing effort to engage with NDIS and providers, and gain those benefits, is beyond many people with psychosocial disabilities. I don’t know how anybody in that situation could sustain the required effort without a very active carer to advocate for them. The idea of a community-led support team is an excellent one. This is a huge gap in the support provided to people with psychosocial disabilities.
Like so many issues in Australia its a Haves and Have-Nots situation. If you live with a disability it pays to have an advocate on your side who is expert in submission/questionnaire writing. Clearly some people are accessing and enjoying great services. Others on the other hand are excluded. One thing is constant and assured though – the NDIS scheme provides lucrative business opportunities for savvy service providers at great expense to working taxpayers.
Sad. I assume these NDIAs are private contractors who are living off public money, ostensibly to do a job, but with a main agenda of maximising their profit while only doing the minimum required by the rules and to hell with the client. Typical neo liberal rubbish. End it now. Nationalise it properly.
You are absolutely, totally correct, Michael!!!
Neo-liberalism has proven itself (once again) to be a malignant blight on our society. It has always been thus.
Michael, the NDIA are the bureaucratic operating arm of the NDIS. The NDIS is effectively a board of directors. The contractors who do the work and provisioning are a mix of private companies, charities and the operations arms of various churches and the like. Some examples are the Multiple Sclerosis Society and the Muscular Dystrophy Assoc. Nearly all the providers of such things as mobility devices, living aids and so on, are private businesses.
NDIA and NDIS can be used interchangeably. Strictly speaking NDIS is the NDI Scheme and NDIA is the NDI Agency who administer it. LACs or Local Area Coordinators represent the NDIS to participants but are often employed by third parties, who you hope is a not for profit.
I would like to believe the change away from Lib/Nat party disinterested do-nothings, followed by an in-house audit will provide a heightened responsibility by all their employees, starting from the top.
Something that is probably a contributing factor to these kinds of completely preventable events occurring, is that the NDIS/NDIA are not medically trained. In Mr Harris’s case, perhaps a psychiatric nurse or a psychiatrist could have checked up on him reasonably frequently.
I’m in the NDIS system, and I’ve had NDIA people telling me that they have doctors who can assess my illnesses. One even told me that I could be cured of my incurable autoimmune conditions. Sometimes, if you don’t laugh, you cry. I told the person how stupid they were and informed them that the diagnosis of the conditions took a long time, and were done by a well respected immunologist. I’ll bet the individual who spoke that rubbish is still working in the system.
Centrelink can tell you there’s nothing wrong with you in the blink of an eye and with no medical or psychological qualifications what so ever. Its incredible!