Last week the Waitangi Tribunal heard in detail how ACC home support has consistently failed Māori whānau – but with the Māori Health Authority set to start operating in July, there’s hope significant change could be on the horizon.

When I was at high school, back in the 90s, there was a canteen serving pies, sausage rolls, chips and ice blocks. But unless you got to the queue before the roller door went up at lunch time, you’d miss out. There was never enough food. If you were on the opposite side of the school when the bell rang, forget it.

After a while, some of the kids started lining up on behalf of others, ordering in bulk and keeping the change. If you didn’t have money, you had two choices: hit someone up for a bite of their pie and be called a scab, or go hungry. Actually, there was a third option: you could just get out of there.

Listening to the evidence in stage two of the Waitangi Tribunal’s Health Services and Outcomes Inquiry (Wai 2575), it struck me that ACC operates its funding a bit like a ’90s high school canteen.

Let’s say you have an accident. You visit your GP. Assessments are made. Different medical practitioners may be involved. If you’re eligible, and things work out the way they’re meant to in theory, you’ll be referred to a local health provider for support. These providers are the intermediaries between you and the canteen. They receive funding from ACC to deliver the services you need. There’s a whole raft of things you might be entitled to, from occupational therapists to accessibility ramps to home support. The local health providers, which includes Māori providers, are an integral part of your wellness and recovery. They’re meant to work for, and with you.

But the substance of the Waitangi claim by Lady Tureiti Moxon (Ngāti Pauhauwera, Ngāti Kahungunu) in relation to home support, delivered during many hours stretching across multiple days, is that the ACC system operates in a way that most certainly does not work for Māori.

“If I’d known that I could ask for a Māori home support organisation or  a Māori carer to come and help, I would’ve gone with that option. If I  could’ve asked for a Māori carer, I would have done it.”

– Brief of evidence presented in Wai 2910

One of the significant systemic failings identified in Moxon’s claim is that many whānau simply do not know that Māori health providers exist or if they do, how to access them. In her opening submission, Roimata Smail, the barrister representing Moxon on behalf of Hamilton’s Te Kōhao Health – Moxon is its tumuaki/managing director – said that if a Māori person needs home support, you would expect them to be quickly and seamlessly referred to a Māori provider in their community. But in practice, that’s not the case. “In stage one of the inquiry the Crown suggested this is a matter of Māori choice,” Smail told the tribunal. “But this claim demonstrates that it’s not a matter of choice at all.”

Why does it matter? What difference does a Māori health provider make over any other kind of provider?

Michael Stewart (Te Aupōuri, Te Rarawa, Ngāti Ruanui me Te Āti Awa) gave evidence to the tribunal from his bed at home in Hamilton where he’s been confined – literally – since 2014. His lack of mobility isn’t a choice, it’s an outcome of a system that has repeatedly refused to grant him an electric wheelchair.

“I thought community OTs [occupational therapists] are supposed to help us with things that might make our lives easier, but they seemed more interested in finding ways to say ‘no’. At our last place where lots of people with disabilities lived, the other residents would tell me about the things they were getting. I would ask my OT for the same and they would say ‘no’ and tell me those other people were paying for theirs.”

To move around inside his whare, Michael has to rely on a homemade trolley with a box on top of it. At one point, after persistent requests, he was sent a manual wheelchair. Linda Stewart (Tūwharetoa, Ngāi Tamarangi), his partner of 30 years, assembled it for him in the garage. When it was ready, two of his mokopuna wheeled him outside. The sun was shining. But when they tried to bring him back inside, they couldn’t get the wheelchair over the lip of the garage. Michael was stranded. Eventually, some people passing by in the street stopped to help. Today, Michael doesn’t leave the house except in an ambulance.

Michael qualified for home support after Linda was injured and couldn’t manage on her own. They were referred to a mainstream provider, but the service was inconsistent and unreliable. A carer would turn up one week then fail to show up the next. Communication was poor. Sometimes, a carer would only stay 20 or 30 minutes before asking for their 60-minute timesheet to be signed. In the few months they were receiving home support, Michael says he must have had about seven or eight caregivers. “It seemed like I had that many caregivers come in, take one look at me and say ‘I’ll see you tomorrow’ and then I never saw that person again.”

He also had to deal with the caregivers’ reactions to his condition. “Growing up and having to go through a lot of Pākehā systems, they look at you and first go: you’re Māori, and secondly, you’re a fat Māori.” Linda talked about the impact of this stigma in her own evidence. “It was sad to see the reactions of those carers. Their facial expressions before they even came in. It was sad, I didn’t like that for him.”

Michael and Linda were almost ready to throw in home support altogether when Te Kōhao intervened. From that day on, things changed. Te Kōhao looked beyond the timesheets to understand what Michael actually needed to be well – then they set about activating the system to ensure he received it. The level and quality of care improved overnight.

It wasn’t just the big things, like reliability and communication and practical support, it was the small things, like remembering the names of their moko. Linda described the care from Te Kōhao as a “breakthrough”.

“It’s up to us to nurture them, to give them what they need and deserve. It’s not part of the standard contract. We are not just listening to what an assessor has said and going in and doing it blindly. We are going in and spending the time we need to building that relationship, making them feel comfortable and forming trust. ”

– Brief of evidence, Valerie Rippey, Te Kōhao Health

Given their unique position between ACC and the injured, kaiāwhina or caregivers are probably better positioned than anyone to identify the areas where the system is failing Māori. Pou hauora/health manager at Te Kōhao, Valerie Rippey (Tainui, Ngāti te Ikanahu) told the tribunal that one of the first issues is getting Māori to accept the help they’re entitled to. Many whānau are already in quite a deteriorated state by the time they come into care because they have tried to make do for so long on their own.

Assuring them that they are entitled to support, and building their confidence to know that the service actually will support them as opposed to judge or punish them, can be a challenge. Rippey told the tribunal: “I would say 90% of Europeans that come into our service know it is their right to be serviced. Māori kuia do not have that perception, they believe there is someone else who needs help more than them.”

Due to the intimacy of the caregiver-whānau relationship, culturally appropriate support is critical. “For our Māori koro to have a non-Māori come into their home to shower them, nine times out of ten they are not going to accept their help,” said Rippey. Building trust and rapport from the very start, often through whakapapa, is something the Māori health providers do naturally. Kaiāwhina routinely do unpaid work simply because it’s needed – everything from defrosting freezers to staying late to ensure tasks are finished. One of the kaiāwhina from Te Kōhao, Rebecca Te Kanawa (Tainui, Ngāti Tamatera), told the tribunal that the culture of going above and beyond for whānau is normal for her. “It’s just who I am.”

If care lapses, which it often does because ACC funding tends to be short term, it’s up to the whānau to seek a renewal from their GP – sometimes as often as every six weeks. Many whānau, however, aren’t able to. Rippey said most Māori are not going to make a big fuss over themselves, so advocacy to help whānau remove the barriers and access the support they’re entitled to is another hidden part of the role.

In addition, the referral process is managed by others, usually non-Māori practitioners, using tools and assessments that do not capture the unique cultural needs of Māori whānau. Māori health providers, such as Te Kōhao, have no say at all in relation to referrals or assessments.

Whenever support is withheld, issues compound and the risks increase. Whānau become more vulnerable to sickness or re-injury – to say nothing of the loss of dignity that whānau can feel when they are not able to manage tasks that able-bodied people might regard as simple and easy. Rippey told the tribunal that one of their koro cried in gratitude when a kaiāwhina cleaned out his freezer which had become so full of frost he couldn’t fit any kai inside it.

Sometimes, restoring a person’s independence – and mana – is as simple as installing a handrail in the bathroom or providing a commode. It’s also saving money in the long run. Rippey told the tribunal: “If someone is having difficulty lifting their leg up to get into a bath because there is no shower, they are likely going to stay on ACC longer because that person actually can’t get in and out of the shower safely. I will go back to Geneva and say, ‘I need you to go back to ACC and tell them that we need to look at the shower, it is unsafe, can we get a stool in there for them please?'”

Rippey said the vast majority of Te Kōhao Health’s kaiāwhina (75% of whom are Māori) do the work because they love it, not for the money. “They love working with our kaumātua. They love the outcomes when they see a nan engaging and not isolated.”

“Māori primary health organisations and providers are innovative and have achieved impressive improvements in Māori health outcomes despite the limitations of the primary health care system…. these organisations should be considered benchmarks for the approaches and performance of the rest of the sector.”

– Hauora: Report on Stage one of the Health Services and Outcomes Kaupapa Inquiry

If Māori Health providers are the benchmark, as described in the Hauora report, it is difficult to understand why providers such as Te Kōhao receive so few referrals from ACC.

Te Kōhao has over 8,000 people connected to their services, but cares for only 11 whānau through ACC home support. Of those, only five are Māori, and two are historical referrals dating back to 2003 and 2007. “In my rough estimation,” Rippey shared in her evidence, “15% of people who come to see our doctors have an injury which entitles them to assistance from ACC. That is over 500 people might potentially be in our service but are not.”

Statistically, Moxon told the tribunal, Māori have the most accidents, yet are under-represented in the utilisation of ACC funded services. The term “underutilisation”, she said, “makes it sound like it’s the fault of Māori that they don’t access ACC. But there are lots and lots of stories about how people have been fighting ACC for years and years and are traumatised by it. Many Māori are not receiving care until they are absolutely incapacitated.”

Rippey highlighted the issue from the caregiver’s perspective. “Whānau will say, I didn’t know I was entitled to that; I didn’t know that place was available. A lot of people are not confident and struggle with the amount of paperwork that you have to fill in and sign and the fine print and all that. I believe that’s why a lot of them don’t bother.”

The story of how the Crown has created barriers and structures that prevent Māori accessing appropriate Māori care is complex. In 2003, Te Kōhao Health was directly contracted by ACC to provide care. But in 2012, for reasons that remain unclear, ACC decided to put limitations around who they’d fund to provide services.

Going back to the high school canteen analogy, the new “limited supplier model” basically means that only those approved by ACC are allowed to approach the window and receive funding to provide care. Te Kōhao is not one of them. Instead, ACC contracts just a handful of national providers, none of which, Moxon’s claim said, are Māori.

To stay in the picture, Te Kōhao had to negotiate with part-Australian owned, Auckland-based Geneva Healthcare under a subcontracting agreement. They were meant to receive around 100 home support referrals per year, but in practice, it doesn’t happen. Moxon also discussed “top slicing” in her evidence, which is the portion of funding that is kept by the organisation who receives and passes on the referral – like the kids who kept the change as a fee for lining up at the canteen on behalf of their mates.

To compete with the big national providers, on two separate occasions, Te Kōhao tried to become approved as a supplier for ACC. The first bid didn’t go ahead, but the second, in 2018, looked more promising. This collective tender included eight Māori health providers from all across the country working in partnership with Geneva Healthcare. But not only was the tender rejected, it was ranked 14th out of 15 of all tenders submitted. Worse, on the criteria of “cultural responsiveness”, the collective achieved a score of only 5.2 out of 10.

Moxon said in her evidence that it was impossible to believe. Once again, Geneva Healthcare was successful with its individual proposal.

“ACC are only looking at the data, but by doing that, they are making mistakes. People are not going to get better while they are only looking at clinical data and clinical outcomes. In my opinion, most of our whānau have social needs, and if you address the social needs, you will address the clinical needs at the same time.”

– Brief of evidence, Valerie Rippey

A lack of funding prevents Māori health providers from investing in additional frontline skills and services. This capability-lack then becomes a reason local Māori health providers are not successful competing against the big national suppliers for large contracts. The system sets up the barriers, and then uses those barriers as justification to deny funding and prevent growth. “We are trying to stay in a realm that doesn’t acknowledge us,” Moxon said to the tribunal. “And yet grows fat on the backs of people’s misery and poverty.”

Rippey described the current system as a “circus,” but with the Māori Health Authority set to start operating in July, she feels optimistic about the future – especially if the Māori Health Authority will be given power to administer ACC funding at the source. “I believe Te Kōhao Health should be given the autonomy and proper funding so we can look after our ourselves, and show everyone how we do a damn better job than what the system currently offers. If every Māori person in our area who needed personal care or home help were referred to Te Kōhao Health, the organisation would be the same as it is now, only we’d have to employ more staff. Our processes would be the same. The kaupapa doesn’t change.”

This hope for the future is the reason Michael Stewart decided to share his story. He wanted others to know that there are options out there for Māori, and to ask, and keep on asking. No one should be stranded.

“I’m telling my story because I hope that this can help other people,” he told the tribunal. “That’s the main difference I hope I can make.”

This is Public Interest Journalism funded through NZ On Air.

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