Every now and then, my mum will mention something about my older sister.
Born a year and a half before me, Saleima had cerebral palsy and was severely disabled. Because of this, our family operated differently from a lot of others. As a kid, it was not something Ithought much about. After all, I was the addition, and whatever followed was normal life.
Long stints at Starship hospital because Saleima had another bout of pneumonia, and vans full of wheelchair-bound students in the drive - complete with one of her friends who cussed merrily in Samoan - all featured in my childhood routines.
When Saleima died at age 14, those routines changed dramatically. My family, which had built itself around her needs, had to learn to live without her. For my 13-year-old self, it was unfamiliar and unwelcome territory. Life without my most dependable buddy had simply never existed.
Invariably, memories of my life with Saleima differ from my parents. Notably, I was unaware of the battles they fought with public agencies over access to basic resources and services for her.
As an adult, it has been interesting to learn how those played out. The current case of Auckland mother Diane Moody, and her adult son Shane Chamberlain, has prompted a few conversations in our family about ongoing disability rights' problems.
Similar to Saleima, Shane is completely dependant on others for his care and wellbeing and requires 24-hour supervision. He lives at home with his mother, is severely intellectually disabled and has Williams Syndrome.
The pair made the news last year after an historic legal victory against the Ministry of Health. The February Court of Appeal ruling was the result of a four-year battle over funding Moody applied for under the Ministry's Family Funded Care policy. Implemented in 2012, the policy enabled funding for disabled children who lived at home and were cared for by their parents.
Shane Chamberlain with his mum Diane Moody at their family home in Auckland. Photo / Greg Bowker
Moody's case focused on the Ministry's decision to fund just 17 hours' care, despite Shane's high needs. When I spoke to Moody about it last year, she derided the Ministry's "ridiculous" needs assessment process that came up with the 17-hour allocation.
"They have these people come out to your home for these assessments so they can make decisions on you and your child's life - yet it's clear that they haven't made any time to read anything in Shane's file," she said. "Every time I have to go through the process of saying: 'Yes, Shane is still handicapped. Yes, he needs help getting dressed; Yes, he needs supervision because of his health needs; No, he can't drive, and so on'."
When I told my mum about it, she shook her head.
"It's just awful," she said. "Sometimes I'd tell them that 'yes, all of a sudden, Leima learnt to drive and she can walk and she can now do up her shoelaces'. Other times, I'd just sort of stare at them and stay silent. Same questions, every time. No regard for what the last person asked three months' back or whether the words coming out their mouth are sensible."
While that was more than 15 years' ago, the similarity to Moody's comments highlights the lack of progress around the treatment of disabled persons and their families in New Zealand. It seems we are still contending with the same backwards processes from last century.
For those who have lived through it, it is particularly staggering.
So, when Moody and Shane won in the Court of Appeal, my mum considered it a victory for the team.
She felt particularly vindicated with the bench's remarks about the Ministry's funding processes. "They verge on the impenetrable, especially for a lay person," the decision stated. "We hope that the Ministry is able to find an effective means of streamlining the regime, thereby rendering it accessible for the people who need it most and those who care for them."
Importantly, she understood Moody's determination to follow through the Court of Appeal case with one in the Employment Court, despite a recent Government announcement that changes to the Family Funded Care policy are set for 2020.
Under the current policy, Moody is an employee of Shane. She is asking the court to test the nature of that employment relationship, and declare whether it is Shane or the Ministry that is the true employer.
The Government has already said an employment relationship between family members would not be required under the reformed policy, however Moody does not want to rely on "promises" for change.
And her instinct to pursue a court ruling appears on target. A minute from the Employment Court, released last week, confirmed legislation for the announced changes is yet to be drafted. Significantly, the Government has also said no changes are planned for the needs assessment process - which is what determines funding hours for family members.
Speaking to TVNZ about the announced changes, Moody summarised the likely sentiment of many lifetime disability advocates: "When all the 'i's are dotted and the 't's are crossed, and it's all done properly, then it'll be good. But, let's not hold our breath just yet."
To that I'll add another comment from my mum: "We'll get there eventually, one day".
