Like so many mothers who have a child with a permanent medical condition or disability, 84-year-old Augusta woman Barbara Barker’s entire life has been devoted to her son, Jeff.
 
Jeff, who turned 50 in 2020, was diagnosed with both Type I Diabetes and bipolar disorder as a teenager in the late 1980s, leading to a critical need for lifelong care, which Barbara provided alongside her husband, until he passed away in 2000. Jeff also needed medical and disability support, including services from the National Disability Insurance Scheme (NDIS).
 
Jeff always lived with his mum and he was always supported by his family. Barbara, who has lived in Western Australia her entire life, built Jeff a small apartment on her property for him to share with his partner of 10 years, who also has a severe mental illness and whom Jeff helped care for. Jeff’s sister Carolyn lived on the property next door with her own family. 
 
In March 2020, Jeff’s NDIS supports, which included carers coming to his home, suddenly stopped with no explanation. Despite Jeff’s family’s close proximity and desire to support him in every way, without the NDIS assistance his mental and physical health deteriorated and by June 2020 a chain reaction had been sparked that would see him dead within the year. 
 
Barbara and Carolyn were doing everything they could to ensure Jeff was taken care of but as his mental health got worse and he continuously fell into crisis, it became impossible. Carolyn was in regular contact with the NDIS to push for Jeff to have adequate support services. As the situation worsened, so desperate was she for help for Jeff, she pleaded in writing to Morrison Government Ministers Stuart Robert and Greg Hunt for assistance. No Government minister could be bothered helping.
 
On the advice of his doctors, in September 2020 Jeff moved 150km north to temporary accommodation in Bunbury where he could have better access to medical and NDIS support services. Although Jeff was now hours away, Barbara and Carolyn thought he was in the right place and they assumed the NDIS allocated support provider was doing the almost daily check-ups approved in his plan.
 
In April 2021, Jeff and his partner moved into their new home, an apartment in Bunbury with NDIS-funded carers and cleaners. But a visit to Augusta to see his mum in late April sent shockwaves through the Barker family — Jeff was thin, dishevelled and clearly very unwell. 
 
His family immediately contacted Jeff’s NDIS support coordinator begging that he be checked daily due to his family’s fears that he would die. Just 12 days later Jeff was found unconscious by a carer and, despite emergency services attending, he died in hospital soon after. He had not been checked on at home for days and no one is able to say when he lost consciousness. 
 
There is now a NDIS watchdog investigation and a coroner’s report pending. Jeff’s family does not want what happened to him to happen to anyone else on the NDIS. 
 
Jeff Barker is at least the fifth Australian to die on the NDIS due to neglect or maladministration in the past three years. 
 
In South Australia: Ann Marie Smith died of severe neglect after being abandoned in a cane chair for more than a year.
 
In NSW: David Harris died at home, after the NDIS cut off his supports because he did not attend a planning meeting, but was not found for months.
 
In Tasmania: Tim Rubenach died in severe pain while waiting for the NDIS to send him a new bed and a chair.
 
And in Queensland: 23-year-old Liam Danher died earlier this year from a seizure after months of fighting the National Disability Insurance Agency (NDIA), the government department in charge of the NDIS, for a seizure mat that his family say could have saved his life.
 
All of these deaths were preventable, all of these people were victims of bureaucratic red tape and a bad culture that has come to rule the NDIA. This is not the best practice and common sense that Australians expect from a government agency which holds so much responsibility.
 
All of these people were loved. All of these people and their families trusted the NDIS would provide support that would ensure their safety and survival. All of these people were let down by the Morrison Government. 
 
Carolyn said in an interview this week, “It is really hard to help Mum process this and to understand that she couldn't have done more to try and support her son. She's 84 and we needed to plan for as much independence for Jeff as we could.”
 
“We were led to believe that this was the best outcome, that … this would improve his outcomes, not end in this catastrophic way.”
 
For the past eight years, seven different Liberal ministers have been caretakers of the NDIS, the scheme Labor introduced in 2013. 
 
The NDIS needs new senior management. If we are to ensure that more people don’t die, we need to make bloody sure government agencies are fit for purpose. We need to make sure families like the Barkers and mum’s like Barbara don’t have to see their child’s life end the way Jeff’s did. They deserve dignity, not catastrophe.
 
This was first published in The West Australian on Wednesday, 30 June 2021.