health & science

A humiliating and impenetrable system

Diane Moody has spent more than four years trying to navigate a system described as nearly “impenetrable” to get funding for her high-needs son. Teuila Fuatai reports on the layers of people and policies in the system she battled.  

Since her son Shane Chamberlain’s birth, Diane Moody has been told he’d be better off being looked after by other people.

Fifty-one years later - and four years after first taking on the Government over funding for Shane’s care - Moody smiles from the pair’s Auckland home knowing she’s done right by her son.

“It’s just us, our life,” the 76-year-old says the week after a Court of Appeal ruling found in her and Shane’s favour - rejecting the Government’s arguments in the case.

Shane, who is severely intellectually disabled and also has Williams Syndrome, requires 24-hour supervision, and help with basic tasks like dressing and eating. He is completely dependent on others - namely Moody - for his care and wellbeing.

“No idea what was to come”

The pair’s problematic interaction, and subsequent court battle with the Government, began in October 2013 - following the implementation of the Ministry of Health’s Family Funded Care policy.

Set up to enable funding for disabled children who live at home and are cared for by their parents, the policy was introduced in response to a 2012 Court of Appeal decision which found the Ministry’s then-family funding policy to be discriminatory.

Moody, who had followed the multi-year battle of the eight “Atkinson parents” over the years, says a phone call with the Taikura Trust - the agency responsible for assessing a person’s eligibility for disability funding and support services - about family funded care is how it all started.

“I had absolutely no idea what was to come,” Moody says while rolling her eyes.

I just couldn’t believe that they had somehow worked out a certain number of minutes to allocate to wiping Shane’s bottom.

- Diane Moody

“I just thought from how they were describing it, especially [then-Health Minister] Tony Ryall, that we’d get funding for 40 hours,” she said.

Over the next year, she dealt with upwards of 20 people from Taikura and the Ministry, trying to secure funding through the policy for Shane’s care. Dozens of frustrating emails, phone calls, unanswered queries and even a few in-person visits from “needs assessment” staff failed to do what Moody thought family funded care was set up for, she says.

Furthermore, a sample of the hundreds of pages of printed email communications between Moody, Jane Carrigan - a friend of Moody who eventually become Shane’s welfare guardian and legal advocate - and members of Taikura and the Ministry of Health paint a frustrating state of affairs.

At the heart of it all was the Needs Assessment and Service Coordination process - which people like Shane must complete if funding is to be assigned. And while Moody describes the “dance” of just securing an assessment appointment as “bad enough”, the resulting weekly funding allocation of 11 hours was “quite frankly offensive”.

“Yes, Shane is able to walk, and he can move around the house on his own - but I can’t leave him here by himself. He needs help eating, and has special behavioural needs, and constant supervision because he’s essentially got the mental capacity of a baby.”

“I put up with them [needs assessments] because we’ve always had to, but that was quite frankly offensive.”

Moody was also told that to receive the 11 hours, she would have to enter into an arrangement where she is Shane’s employee. Funding is then paid into Shane’s bank account, and transferred to Moody.

“It’s never, ever been about the money, but when they do it like that, when they make you become your child’s employee - who by the way can’t actually be an employer because he doesn’t have the mental capacity to do that - it just makes you want to drop the whole thing.

“And that’s if you even reach that point in the process, because just to get a needs assessment organised, and get the process going, it took me months,” Moody says shaking her head.

Reinforcements called in: Jane Carrigan

Moody, who appealed the initial 11 hours funding allocation, says she asked Carrigan to help deal with Taikura in August 2014 because she had become exasperated at the numerous people and processes she had been put through to receive a funding allocation “which didn’t reflect reality at all”.

Carrigan, who lived and worked in Auckland, says she initially thought Moody - a longtime friend - was being dramatic.

“But when I started putting together the chronology of events, and trying to deal with the Ministry, Taikura and any other service people that were thrown in, it became clear that wasn’t the case at all.”

Jane Carrigan in the basement "office" Diane Moody has set up for her over the course of her and Shane Chamberlain's case. Photo: Teuila Fuatai

As the pair requested a reassessment of Shane’s needs, with the aim of increasing his and Moody’s funding allocation, a plethora of “strange and ridiculous” requirements and details were revealed, she says.

On one occasion, when Moody requested Shane’s file from Taikura, the agency came back asking for written consent from him. An excerpt from the email - described with hearty laughter from Carrigan and Moody - reads:

“I am fully aware that you are the full time carer for Shane and what his disability is. For this reason, I have also made a phone call to the Privacy Commission to double check and they also advised that I need the correct documentation before I can release the information to you, as Shane is an adult.”

“I couldn’t believe it. Shane can’t read or write, let alone sign a document - yet they had gone and contacted the Privacy Commission to get advice on whether we could have his own file,” Carrigan says.  

“So we sent them a letter that Shane had scribbled all over, and they accepted it.

“The layers of bureaucracy, and the nonsense that happens is astounding - and it takes up so many of the resources that should actually be going towards funding care for people like Shane.”

As the pair continued to negotiate the reassessment process, and eventually go on to request a judicial review into the funding allocation decision, both point to the discovery of how needs assessments are translated into “funding hours” as a particular low point.

We have referred to our unease ... about the complexity of the statutory instruments governing funding eligibility for disability support services. They verge on the impenetrable.

- Court of Appeal

Evidence presented in the High Court judicial review case, initiated in 2015, shows that funding is based on the breakdown of various tasks involved in looking after Shane each day.

While the needs assessment process involves a person visiting Moody and Shane in their home to run through a form, no mention is made of the discrete time-allocations - which in the initial 2014 assessment assigns “four minutes per day for toileting support”.

“I was absolutely disgusted when I saw that stuff,” Moody says.

“I just couldn’t believe that they had somehow worked out a certain number of minutes to allocate to wiping Shane’s bottom. So then if he goes twice a day, that’s two minutes per visit? It’s just not right that they do things like that,” she says.

Legal battles: service can’t be quantified routinely and discretely

Initially, Moody and Carrigan experienced a setback at High Court level after it sided with the the Ministry of Health - the then-respondent - over the funding decision. But after successfully seeking leave to appeal that decision, the pair, and Shane, managed a significant victory in the Court of Appeal last week.

In the decision, a three-member bench ordered that the decision granting Shane 17 hours of weekly funded family care be set aside. Notably, since his initial 2014 needs assessment allocating 11 hours care, the amount of family funded care Shane and Moody have been allocated has changed about four times.

The court also ordered a reassessment of Shane’s funding application take place “in a manner that is consistent with the purposes of the New Zealand Public Health and Disability Act 2000”.

“The Ministry’s failure to take into account this intermittent type of personal care performed by Mrs Moody, whether during the day or at night, amounts to an error in assessing the scope of disability support services for which a family members is eligible for payment,” the decision says.

“That fact that service cannot be quantified discretely or routinely by use of the Ministry’s unit-based measurement model does not justify its exclusion. A formulaic approach to assessment is inconsistent with the spirit and purpose of the policy.”

Funding system: verges on the impenetrable

Moody, who is erring on the side of caution until the 20-day appeal period lapses, is adamant that something good come out of her and Shane’s ordeal.

“I just find the whole thing completely humiliating. 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. 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'."

Moody’s four-year battle with the system is also acknowledged in the court’s decision.

His quality of life here is better than it ever would have been in residential care.

- Diane Moody

“We have referred to our unease, which is shared by Palmer J [High Court case justice Matthew Palmer] about the complexity of the statutory instruments governing funding eligibility for disability support services. They verge on the impenetrable, especially for a lay person.

“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,” the decision says.

When Newsroom contacted the Ministry for comment, a spokesperson said it was “currently considering the judgment in this case and is unable to comment further”.

Questions to Minister of Health David Clark - the respondent in the appeal case - around whether changes would be made to the system to enable easier access also went unanswered.

Moody, who describes her routines and life with Shane as a “good even keel”, sums up what she believes most parents like her want:

“Shane is 51 and he hasn’t changed, and he isn’t going to change. His quality of life here is better than it ever would have been in residential care - in fact, I’m sure by now he’d be dead because there are some kids for which those places just don’t cater for, and what happens to them is awful.

“All I want is for people and the Government to recognise that, and treat us with a bit of respect.”

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