Tetraplegic Tracey Penney made headlines this summer when she and her whānau were forced to live in their van for three months while on a Housing New Zealand waiting list for a modified rental.
A tetraplegic since the age of three, Tracey told The Hui about her treatment by the organisation that's supposed to make her life easier as a victim of a serious injury.
"I'll be honest - where ACC is concerned, being under them has been more hell than anything in my life."
When Tracey was a month off her third birthday she was run over during a family outing. It was left to her Mum, Anne Penney, to be Tracey's primary caregiver.
She says in the beginning she had no idea what help her and Tracey were entitled to, and it's been an uphill battle to get Tracey the care she needs.
"I don't have time for paper work back then - my time was precious for Tracey," says Anne.
The Penney whānau say Tracey's life has been a revolving door of case managers, case reviews and changing legislation. She lives from one assessment to the next. Help from ACC has been given, then taken away. For example, in 2016 Tracey had three case co-ordinators.
ACC says staff changes can mean a change of co-ordinator, but because Tracey is a serious injury client, her level of service remains uninterrupted.
Because Tracey's accident was in 1991 she was, at that time, under the 1982 Act. She then automatically transitioned to the 1992 Act, then the 1998 Act and is now under the current 2001 Act.
Anne received a lump sum of $27,000 paid into a trust, but Anne - a solo mum - got no extra help to look after Tracey, let alone her three other daughters.
"Mum sacrificed everything. Mum gave up work when I had my accident, she focused on me and my sisters missed out on a mother," Tracey says.
ACC says the number of approved hours changes all the time in response to Tracey's changing circumstances and periods of ill health.
ACC has provided attendant care hours for Tracey on and off over the years, but it's her partner Apera Wilson who holds down things at home, whilst looking after Tracey and their four-year-old daughter Wikitoria.
Apera gave up his job in insulation eight years ago to help care for Tracey. It's an around-the-clock job, but ACC only pays him for 40 hours a week, at $16 an hour - almost the minimum wage.
"Just because we're family or the partner we become natural supports and we only get allocated so many hours, at such a low pay rate. But if somebody else from an agency come in, they get a higher rate and longer hours," says Anne.
Tracey says it's the impact her injury has had on her Mum, partner and daughter that affects her the most.
Tracey is paralysed from her chest down, but she also has a multitude of medical conditions not related to her injuries.
She's completely dependent on her partner Apera to perform the most basic of bodily functions for her, like going to the bathroom.
Tracey also has a pressure sore that she's suffered with for eight years. It's caused an infection in her pelvis.
"Even if my bowels were working because of my pelvic infection I can't sit on the toilet, it creates too much pain for me. It creates more pressure to the wound, so I have to be on my bed."
Tracey gets frequent urinary tract infections and leaking, changing bedding and clothing is frequent. They need replacing all the time, but despite numerous appeals to ACC, it says there's no provision for it.
"I've tried on many occasions, pretty much with every case manager to push for some kind of assistance for clothing. It's not in the policy, she's not entitled to it," says Anne.
Tracey currently receives another 29 hours of paid support a week, but she receives no extra help for the care of four-year-old Wikitoria.
Because of her extensive medical history, Tracey's day-to-day life is a struggle.
"There's always a person that I want to be, and a person that I have to be because I can't control my life - that's out of my control," Tracey says.
If Tracey had been injured as a working adult she would be entitled to 80 percent of her earnings. But as three-year-old child she was assessed as a non-worker and only gets $500 a week from ACC.
"I understand ACC is not made for kids, but kids have accidents like adults. ACC has made her life a misery," Anne says.
Tracey's main criticism with ACC is that it doesn't listen to the needs of those they're supposed to help, and she wants to do what she can do to change things for the clients they serve.
"It's sad to see that those that sit in a position to say yes or no they don't have a disability to understand how real the struggle can be," she says.
The Hui
