Big gap in support funding between disabled people on Ministry of Health and ACC

Friday, 5 August 2022

Over the next five days, Stuff series ACCountable will look at different people’s experiences with ACC, consider how ACC can be improved and what an equitable system would look like for injured and disabled Kiwis.

For the first instalment, OLIVIA SHIVAS speaks to two young women with similar complex disabilities. One has 24/7 care under ACC, the other is funded by the Ministry of Health and has trained herself not to use the toilet when she is home alone.

“I am home alone every afternoon for four or five hours. Too bad if I get hungry, need the toilet or the house burns down. I’m stuck,” says Maqymseahe Ninces​. “I have trained myself not to need the toilet.”

Ninces is a 28-year-old woman living in Auckland. She had brain damage at birth which has caused cerebral palsy. She says it “significantly impairs” her posture, body movement, co-ordination, swallowing and speech.

“To have the most normal life, and to be flexible like anybody else, I realistically require 24/7 care,” she says.

Under her 2021-2022 budget, she has enough funding to pay her caregivers at minimum wage for 87 hours a week, however she often pays staff above minimum-wage rates because she bases it on qualifications and experience.

Since October 2020, Ninces has been requesting more hours and funding, which she receives from the Ministry of Health through a needs assessment service.

As part of the needs assessment process, she explained that she needed the extra support due to a fall which resulted in injuries and bruising.

“I have been told [that in order] to get 24/7 care, I would have to go into a residential facility, or go into a shared flatting situation. Both of these situations mean that I would lose control over my care.”

Alicia Kapa is 23 years old and lives in Auckland. She has cerebral palsy which was caused by a lack of oxygen at birth.

“I have trouble with fine and gross motor skills, so I need help with all daily tasks,” she says.

Her mother had a normal pregnancy, but when Kapa was born, complications began and there were no obstetricians available. While waiting for a specialist to arrive, Kapa, whose birth was natural, wasn’t breathing.

She was given adrenalin to get her heart started again, but by then 15 minutes had elapsed since her delivery.

She was diagnosed with cerebral palsy at 5 days old after a brain scan confirmed the brain damage was a result of oxygen deprivation at birth.

The family put in a claim to ACC for medical misadventure as they felt the midwife was negligent because of the lack of urgency in getting a specialist there.

Kapa’s birth was eventually deemed an accident due to a medical mishap which has a less than 1 per cent chance of occurring, a decision which meant her support would be funded under ACC.

“I’m fully covered by ACC and I have 24/7 care now. I’m living on my own,” she says.

As far as money goes, neither Kapa nor her family receive anything directly from ACC, her mum, Joanna Kapa, says.

Apart from a quarterly payment of just over $1000, which is called an independent living allowance, and a loss of income allowance, “everything else we get is paid for by ACC”.

That includes all of her equipment, 24/7 carers, physiotherapy, Botox treatments, consumables and anything else that a physiotherapist or occupational therapist deems necessary for her needs to be met. ACC pays the supplier directly.

“The big difference between being ACC-funded and not being covered, is that if Alicia needs something and an assessment is done to show the need, it is supplied,” Joanna Kapa says.

But it’s not just the difference in the number of hours of care that Ninces and Kapa get which illustrate the inequities between disabled people funded by MOH and ACC, but the process involved to access mobility equipment as well.

Under the Ministry of Health, if Ninces needs new mobility equipment, she requests it herself through her district health board or applies for it through her disability support funding.

“It comes down to how much you need something, and whether you can wait on the public waiting list,” she says.

In January 2022, Ninces requested a shower chair from the district nurse because she was sitting on the floor to shower. She was told she was already on the waiting list for an occupational therapy assessment; she’s been on the waiting list since April 2021.

Whereas if Kapa needs new mobility equipment, the process goes through her ACC case manager who then requests an occupational therapist to visit Kapa to complete an assessment.

From there, the OT writes a report about what Kapa needs and why she needs it. That application is then sent to her case manager who approves it.

The equipment gets ordered and delivered to her. In total, it takes up to four months for the equipment to arrive.

Same condition, two different support situations

Despite having very similar disabilities and support care needs, Ninces’ and Kapa’s support looks very different under the Ministry of Health and ACC. This comes down to how their disability was acquired.

“My brain damage is most likely the result of a lack of oxygen,” says Ninces.

“My parents speculate that if the midwifery team had consulted doctors as per my parents’ requests, I would not have been without oxygen as long as I was,” she says.

Although Ninces’ parents were denied access to an obstetrician on the day of her birth, there was no way for the family to prove that earlier medical intervention may have prevented her brain damage.

As a result, Ninces’ cerebral palsy is not able to be attributed to an accident, therefore is not covered by ACC.

“If a family suspects that anything is wrong with their child, it is important that they request medical notes before they consult with a doctor,” she says.

Dr Rakesh Patel, an Auckland-based paediatric neurologist, says medical information needs to be recorded “better and objectively” at a child’s birth.

“So if you’ve got a difficult birth, let’s say, and the chances are that whoever is managing that birth is really, really busy, then putting that on to paper afterwards can be difficult. So a lot of the nuances of what happened will be missed.”

In the case of cerebral palsy, families will usually become concerned when an infant doesn't meet the walking milestone. They’ll raise it with their Plunket nurse or GP, and then be referred to paediatrics or neurology.

“What we will do is go through history really carefully,” says Patel.

“We often take a very careful pregnancy and birth history because we’re suspicious that something may have happened in that period and that along with a good, thorough examination, we make the diagnosis of CP, but often leave the cause undetermined until we do further investigations. And that major investigation is the brain scans and MRI – head and spine is important.”

The MRI will help indicate if there has been an injury by showing if the structure of the brain has been put together normally. “If it’s put together abnormally, then the question of a genetic cause arises,” says Patel.

Acquired cerebral palsy may happen when the placenta fails for some reason, and the process of birth can be quite traumatic.

“So just before you were born, you’re not getting enough oxygen to your brain, or just as you’re born, again, poor oxygenation,” says Patel. “And then after you're born we have low glucoses and that can be poorly recognised and can be acted upon too late. So you get an acquired injury through that.”

He says if families suspect a child’s disability was acquired through an accident, parents can put together an ACC review to find out if there was any indication that the disability was injury-related.

“You need to just empower them and say, look, there is this mechanism where ACC will review what's happened. And then they can look at, should this be ACC-funded or not? Part of that is ensuring that this is not a genetic thing.”

He said there is a dichotomy in the care around New Zealand which makes a “massive difference to the outcomes” of disabled people with similar disabilities and needs.

“What’s provided by the DHB should be equivalent to what’s provided through ACC, and that’s really important. So that’s the inequity, right? That needs to be addressed.”

ACC aware of the inequities

In 2021, ACC produced an Aide Memoire titled “ACC’s delivery to priority populations: Part 4 – Disabled people”. In the document, it states there are inequities in support and funding for disabled people.

“There are also inequities between the level of support provided via ACC to people who become disabled as a result of injury, and the level of support provided through other parts of the system to other disabled people.”

Rehabilitation is provided to ACC claimants on an “entitlement basis”, whereas Ministry of Health-funded services for disabled people are “rationed”.

It also states that compensatory entitlements available to some ACC claimants are “more generous” than benefits and entitlements provided by the Ministry of Social Development.

What’s the solution?

Susan St John, associate professor of economics at Auckland University, says New Zealand should be moving towards an “integrated treatment rehabilitation system” where the type of assistance that a person gets is driven by the degree of need, “not the origin of the disability”.

But even if ACC legislation changed to cover non-accident disabilities, it wouldn’t help the current disabled community – only future cases.

“So even if we have marginal changes in ACC … it’s just wrong to leave those that are currently suffering in the system completely unaided; their problems are unaddressed.”

There has been discussion from time to time on how it would cover sickness and disabilities, but it’s always “floundered”, she says.

“One other way of approaching it might be to say, look, we just need to fix up our welfare system. The Supported Living Payment, which is a hard thing to get on with a particular degree of disability to get there, should be much more generous. It should be individual, it should be something that doesn’t have to classify you as some part of the welfare system … we could do a lot better with the welfare system.

“The unification of the treatment of disability regardless of cause is certainly something that could be achieved, perhaps more readily than trying to extend a whole ACC system.

“We need to take a broad view of ACC, New Zealand Super, benefit systems, because they’re all so totally different and the anomalies between them are so great, and look at a unified treatment and rehabilitation system.”

Government urged to address inequities

Disability Rights Commissioner Paula Tesoriero says the level of funding and support for disabled people should respond to people's needs rather than how they acquired their impairment.

“Most of the system at the moment is all set up around diagnosis, set up around whether you tick this box or that box, it’s the cause of impairment that drives whether you are in the MOH system or whether you’re in the ACC system,” she says.

“And it shouldn't be the case that, you know, one group of people receive a greater level of support than another just because of the cause of the impairment.

“It’s inequitable and unfair that two people in what sounds like a very similar situation … are receiving very different levels of care, despite both needing a similar level of care. It’s not acceptable.”

One of the main foundations of how ACC works today is The Woodhouse Report, which was created in 1967. The report recommended a “no-fault” accident compensation programme covering injuries.

“It is unacceptable to still be in a position this many years on where the inequities created in a system … have a real impact on disabled people's lives, and for that not to be addressed by now,” she said.

“I really urge the Government to look at ways to address those inequities.”

System ‘needs fixing’

“I think the ACC system and Ministry of Health system needs to be turned into one system, so everybody is entitled to the same support, regardless of why they have a disability,” Ninces says.

“I think there is a lot of choice in disability support organisations and agencies, which can be good, because no one solution will fit everybody. However, it is frustrating because each family has to work it out for themselves.”

Kapa agrees, adding that the system needs to be more equal, no matter the disability or how it was acquired.

“I think what needs to be fixed with the funding system is making it fair. Everyone with a disability that affects their lives and people who care for them should get the same funding.

“A lot of people have similar conditions but their funding can be so different depending on what caused the accident which I don’t think is fair.”