A distraught mother is battling to keep her home and care for her son after the Accident Compensation Corporation slashed funding.
Sasha Barras’ son Ethan, 11, needs 24-hour care.
The fed-up former hairdresser’s lawyer has now lodged papers in the district court seeking a judicial review, challenging the legitimacy of the ACC needs assessment.
Barras is focusing on ACC’s obligations under The Human Rights Act 1993 and the United Nations Convention on the Rights of The Child.
It guarantees dignity and equity for children with disabilities. New Zealand was a signatory. Barras believes stonewalling by ACC means Ethan’s rights under this provision are not being met.
The court action comes as she nears 18 months of asking for an urgent review.
The last review failed to focus on Ethan’s physical problems caused by a botched surgery, she said.
“The cut in funding is devastating,” she said.
“The latest review was conducted differently from the prior two in that they focused almost exclusively on Ethan’s autism and behaviour and spent almost no time reviewing his physical needs.”
The cut leaves them just $519 a week to live on and Barras has drained the savings she set aside for a house deposit.
It is not possible to pay both the rent and the associated costs of caring for Ethan, she said.
The Ilam resident has appealed for ACC to urgently review their decision which she said makes no sense and contradicts their earlier findings.
Specialists, including Ethan’s paediatric surgeon, as well as the outcomes of two prior ACC reviews, show Ethan’s medical needs have increased.
“I just want Ethan to have a normal childhood, he deserves to be a child,” Barras said.
Born on October 13, 2013 in Nelson Hospital, Ethan was four weeks premature. He has undergone countless surgeries for bowel problems.
A special tube was inserted into his abdomen in 2020, but he suffered a bowel perforation when the tube was damaged while being changed.
A stoma bag was fitted but has never worked properly, Barras said.
Ethan is covered in faecal matter several times a day and suffers from post traumatic stress disorder.
“A stoma is involuntarily activated 24hrs per day, 365 days a year, not between 10am to 2pm daily like the ACC assessor indicated,” Barras said.
“Nathan was an amazing, very placid, happy little boy that has known nothing but pain and discomfort over the last few years.
“Ethan has never had a friend or been to a birthday party. He has never been able to start school.”
The initial needs assessment by ACC found Ethan needed the highest level of care. Medical supplies such as dressings were funded and a carer from
Nurse Maude came in regularly to help.
Barras and Ethan were getting help from a psychologist but that has been stopped too.
She will not stop fighting on her son’s behalf.
“I won’t give up, Ethan’s why I get up and fight for what’s right.”
ACC deputy chief executive service delivery Michael Frampton said it is happy to work with Ethan’s family to consider any new information.
“I’m very sorry to hear about Ethan’s situation and the impact this is having on him and his family,” he said.
“A 2023 reassessment found that while his overall needs remained high, his injury-related needs had reduced.
“They asked for this decision to be independently reviewed, and the reviewer considered that the decision was correct. The matter has been appealed to the district court.
“ACC cannot provide support for pre-existing and underlying health conditions, but we do take this into account because it can impact the type of support the client needs for their injury.
“In Ethan’s case, this meant funding additional behavioural support services.”
