I kept my daughter alive for four years under a broken NDIS system, but just days after she left my care, she died alone and in a pool of her own vomit
A four-year-old girl died alone and in a pool of her own vomit, after her family were left to care for her with little support, following a cut to her care funding under the National Disability Insurance Scheme.
Koa, or ‘Koko’ as her family affectionately called her, was diagnosed with a rare and incurable neurological condition called Lissencephaly when she was five weeks old.
She passed away in July, after she caught influenza. She choked on her own vomit while alone in a hospital ward and was pronounced dead a day later.
Koa’s genetic condition causes severe intellectual and developmental delays, often accompanied by epilepsy, cerebral palsy, and other neurological issues. Many with the diagnosis do not live past the age of 10.
Her mother, Aleisha Gibson, has accused the NDIS of failing her terminally-ill daughter after support for Koa was limited to a nurse just three hours a week.
Mrs Gibson said the government service failed to acknowledge the extent of Koa’s disabilities, with one paediatrician telling her that if Koa was not deserving of a full-time professional carer, ‘no other child’ in Australia was.
‘From the moment we started asking for help, there was pushback, it didn’t matter how much evidence we provided of her disabilities, how many supporting letters, or what we told them Koa needed to live,’ Mrs Gibson told Daily Mail.
Between the ages of two and three years, Koa’s condition worsened and the full extent of her associated disabilities were revealed as she underwent precocious puberty – the rapid, early onset of puberty.
Aleisha Gibson (centre) is pictured with her middle daughter Koa, (left) and eldest daughter
Koa (pictured with Mrs Gibson) suffered from Lissencephaly, cerebral palsy and several other medical issues, and experienced early onset puberty at just two-years-old
Her body doubled in size in three months, meaning she required a higher level of care than what was provided in her 12-month plan with the NDIS.
Symptoms of cerebral palsy, scoliosis, and respiratory issues became clear to her mother and doctors – but not to the ‘button pushers’ at the NDIS, Mrs Gibson said.
‘We must have had about 15 to 20 letters from professionals providing supporting evidence that Koa was not receiving adequate help and she needed more,’ she said.
‘She went from needing one person to carry her to three to four, a push chair needed to be a standard wheelchair… her ‘plan’ did not suit her, they were evaluating her as a two-year-old when it should have been as if she was six or seven.’
On May 19, the NDIS changed how funding is provided to recipients.
Now, when a plan is reassessed, participants receive funding in three-month blocks rather than accessing their 12 months of funding all at once.
Koa’s 150-hour allocation for nursing equated to less than three hours per week.
‘It didn’t matter how much we begged, [the NDIS] still ignored even supporting evidence and we were overruled,’ Mrs Gibson said.
However, when an accelerated puberty exposed the additional illnesses, Mrs Gibson (pictured with Koa) said an adequate extension of NDIS assistance was not offered
Mrs Gibson sent outlined Koa’s additional disabilities as they became evident in urgent letters to the NDIS, including the email pictured above
‘She was on oxygen 24/7, a BIPAP ventilator, suffered eight hour-long seizures each day and needed up to 60 medications a day.’
Mrs Gibson said her mental health suffered while caring for Koa on her own.
‘I was doing a doctor’s, a nurse’s, an ICU worker’s job in my home by myself. My mental health was at rock bottom, I wanted to die,’ she said.
‘The NDIS didn’t care, I put in a letter that I wanted to die, and nothing changed.’
Mrs Gibson begged the NDIS to release the rest of Koa’s funds ahead of winter, knowing it was the most dangerous season for at-risk patients.
She tried to negotiate, asking if all of Koa’s funding could be released in the place of 24/7 nursing, which she was in the process of trying to secure.
Despite other cases of leniency, the NDIS refused. Then, Mrs Gibson became unwell.
‘In June, I caught influenza as Koa’s primary caregiver, and I knew I was going to kill her. I had nurses volunteer their time because they knew if Koa would catch it she would die…’ she recalled.
‘The NDIS didn’t leave me any space to get sick, they don’t account for life.’
The Gibson family in happier times (Pictured L-R: Sky, Ben Gibson, Koa, Mrs Gibson and Ava)
Koa did catch her mother’s flu and was rushed to hospital on July 7, where one nurse is typically in charge of four cases.
On July 10, she vomited medication into her respiration mask – a known risk with her condition which requires immediate suctioning.
Alone on the ward, Koa began to drown in her own vomit. The little girl was pronounced dead the following day.
Mrs Gibson said the loss was difficult to overcome, but the indignity Koa and family had suffered was entirely unjust.
‘When someone passes, it’s outside anyone’s control, but the NDIS could have made my life easier, it could have granted me quality time,’ she said.
‘We live in a first world country, we should be looking after Australians. Just because they’re disabled does not meant they are less than.’
Mrs Gibson said she cried for hours after losing Koa, her eldest daughter.
‘I wanted to die at the hands of our own government, I can only imagine what it’s like in the shoes of a disabled person,’ she said.
Ms Gibson said Koa’s passing was inevitable, but wished her daughter’s care under the NDIS had been more dignified (the Gibson family are pictured)
‘Koa’s gone, but I want accountability from the NDIS, whether it’s lifting funding blocks for other Australians like me.
‘They need to get in touch with the actual disability community.
‘The disabled community is only ever asking for enough to stay alive.’
She said even the most removed roles in the NDIS should be required to have contact with the real people impacted by their policies.
An NDIS spokesman said the service extended their condolences to the Gibson family.
‘We express our deepest condolences to the family and friends of Koa Gibson,’ he told Daily Mail in a statement.
‘The NDIS provides disability-related supports. It was designed to complement not replace mainstream services the states and territories provide such as the health system, who the NDIS works with, and is best placed to provide medical and palliative care.
‘This is to ensure the best services are provided to meet the disability and health needs related to each person’s individual circumstances and that participants access the right mix of disability and health care supports.
‘The NDIS has and always will assess all relevant information received from participants and allied health teams when making decisions in line with the NDIS Act.’
