‘It takes a tragedy for something to actually happen’
Disabled people have to navigate a world that is often not built to suit their needs. In Auckland, hundreds of people need an accessible state house, but are left waiting for either the home or the modifications they require. Josephine Franks reports.
Fennel is growing wild out the back of Pearl Schomburg’s home, tufts of fuzzy green untamed after months with no gardener. There used to be a makeshift stack of beer crates to get up to the raised beds, until Schomburg fell through them and ended up in hospital. The accident could have killed her, she says, because her rheumatoid arthritis has ‘‘attacked’’ an old whiplash injury, eroding the bone. It means a bad fall could sever her spinal cord.
But when she first asked for stairs, she was told no: ‘‘Housing New Zealand said there was no reason for me to go up there’’, she says. After the accident, steps were installed so Schomburg could access both halves of her garden.
The neat little Ka¯ inga Ora house is at the end of a cul-de-sac in the Auckland suburb of Pt Chevalier. It’s been Schomburg’s home for almost 20 years, and she plans to stay there until she’s ‘‘carried out in a box’’. But she can’t use parts of the house because they’re not modified for her.
Schomburg has multiple autoimmune and chronic conditions, ‘‘a bit of a complicated health scenario’’. Her tendons break easily, and she needs a couple of surgeries a year – often sustaining surgery injuries along the way.
She’s had both feet reconstructed, a knee replacement, both shoulders removed, and eight operations on her right hand.
Schomburg has very little strength and grip. She demonstrates the mobility in her right arm and shoulder: it gets to waist height and stops. Her left hand she can reach overhead, ‘‘but it has no strength’’.
Most of her kitchen is useless to her. She can only reach things if they’re at the front of the cupboard and not too low.
It wouldn’t take much to make the kitchen accessible. Replace the cupboards for drawers and everything would be in reach. A single-drawer dishwasher, which Schomburg says she’s been promised since she moved in, would mean she wouldn’t have to stack dirty dishes until a support worker can do the washing up.
‘‘You have this constantly overwhelming sense of losing your independence and having to rely on other people,’’ she says.
Getting seemingly simple modifications is a ‘‘nightmare’’, Schomburg says. Funding is available to her through ACC, Auckland District
Health Board and Ka¯ inga Ora, but ‘‘in terms of actually practically getting it organised, it’s impossible’’, she says.
‘‘I don’t know if you’ve tried to get three different government agencies working on the same project, but I’m just a little old nana, and I’ve been trying all this time to organise it and it just doesn’t work.’’
She got funding for a few things, including bathroom handrails and a bidet system for the toilet, but it’s been piecemeal and arduous.
She asked for a step to get outside, and was told she had to choose which door she wanted it fitted to: the ranch slider or the door to the laundry. She chose the slider and makes do with a plastic bath stool at the other door, but has slipped off it a few times and worries about a more serious injury.
‘‘It takes a tragedy for something to actually happen,’’ she says.
There are other little things: turning on the taps, flushing the toilet and opening the shower door require more strength than she has, the light switches are too high to use comfortably.
When she could no longer reach the shoulderheight lever to turn her shower on, builders came and drilled a hole through the plastic, tying a piece of string around it which she had to tug to turn the water on and adjust the temperature.
‘‘Little, little things like that can be such a frustration. When they do these maintenance issues … they’re not thinking about people with disabilities.’’
Dr Huhana Hickey (Tainui, Whakato¯ hea) – a lawyer, disability advocate and Ka¯ inga Ora tenant – knows how hard disabled people have to fight for modifications. ‘‘Nightmare’’ is the word she uses, too. The process is fraught with delays, barriers and bureaucracy, she says, and it’s reactive rather than proactive.
Hickey has multiple sclerosis, uses a power chair, and is losing more mobility. She says you would think you could pre-empt modifications, ‘‘so
that you’re ready to go when you lose more mobility’’.
However, she says, it’s never done that way. ‘‘They have to wait until you lose it and then you can’t manage before they will approve. So it’s frustrating.’’
With an ‘‘awesome’’ occupational therapist and the skills to articulate her needs, Hickey has received most of the modifications she has asked for. But not everyone can navigate these complex systems.
‘‘You’ve got to put a lot of energy in if you want to get anything,’’ she says.
‘‘When a diagnosis happens, you don’t get information, you don’t know what to do. You don’t know what’s out there, you have to find it out.
‘‘And that’s the problem – a lot of people have never asked for modifications, because they didn’t know they could.’’
Schomburg echoes those sentiments: ‘‘You don’t know what you need until it’s presented to you and it can have such a massive impact on your life.
‘‘There’s nobody coming towards you saying ‘Hey, do you think this could be helpful?’.’’
Sometimes even the people who are paid to help don’t know what’s best, she says. One time she was presented with a tool that was supposed to help her open pill bottles, but it turned out to be a novelty beer bottle-opener.
Even being articulate won’t magic up more houses. Hickey’s bathroom isn’t fully accessible, and the building is too old to get a modification approved. She’s been told she’ll be transferred, ‘‘but there’s no houses’’.
In Auckland at the end of June 2021, there were 336 people on the housing register in need of a modified house, figures released under the Official Information Act show. Throughout the rest of New Zealand, that number was 681.
There were a further 198 people on the transfer register waiting for a house that met their needs in Auckland, and 261 in the rest of the country.
Ka¯ inga Ora says it does not know how many of its properties are suitable for disabled people. The state housing agency says it has not historically tracked the number of houses that meet universal design standards, but started tracking this on July 1, 2021, with data available ‘‘in future reporting periods’’.
Universal design is the gold standard for accessibility. With features including wider doorways, step-free access and slipresistant flooring, it means spaces can be used by people of all ages, sizes and abilities, and further modifications are easy to work in.
Ka¯ inga Ora has set a target for 15 per cent of its new builds to meet universal design standards. That’s ‘‘far too low’’ in the eyes of Disability Rights Commissioner Paula Tesoriero. She says the target should be 100 per cent. An estimated 14 per cent of the population has a physical impairment that limits their everyday activities, while about 1-2 per cent of the nation’s houses are accessible. In the 2018 general social survey, 20 per cent of disabled people said moving around their home was a problem, and one in 10 said their home was unsuitable. Universal design isn’t just good for disabled people, Tesoriero says – it benefits families and an ageing population as well. She wants to see Ka¯ inga Ora ‘‘leading the charge’’ on accessible building. ‘‘When the target is so low, in my mind, it doesn’t really encourage innovative thinking about how you might remove those barriers.’’ Associate Housing Minister Poto Williams says Ka¯ inga Ora’s 15 per cent target was reached through ‘‘extensive consultation with its stakeholders, including disability advocates’’. The agency is looking to increase the target ‘‘over time’’, she says.
Ka¯ inga Ora does not determine specific modifications for people with disabilities, but is working with the Ministry of Health, ACC and Ministry of Social Development to review existing housing modification processes, she says. Building to universal design doesn’t need to be more expensive, Lifemark’s general manager Geoff Penrose says. Lifemark is a division of CCS Disability Action that provides advice around making buildings accessible for people with disabilities. When universal design is incorporated at the design stage, it might account for 1 per cent of the total build cost, sometimes less.
That’s a lot less than retrofitting. A study by BRANZ, an independent research company, showed it is 10 times cheaper to equip a house with universal design features when it is being built than to add them later.
Hickey was recently taken on a tour of some Ka¯ inga Ora new builds. ‘‘They were very proud of these beautiful accessible units,’’ she says. ‘‘[But] they couldn’t get me through the door.’’
She eventually got inside, after getting out of her chair so it could be manoeuvred through the entrance.
‘‘I looked in at the bedroom and said, ‘So you’re just aiming for a little old lady and a walker’,’’ – there was no space for a partner, a wheelchair, a service dog or the extra equipment disabled people often need, she says.
It was a similar story when she was invited to look at a potential house to move to. It was two storeys, with a similar single bedroom downstairs, the bathroom and showers upstairs with no lift, ‘‘and a really rickety wooden ramp to go in’’, she says.
‘‘That was a brand-new build. They consider that to be accessible. So the definition of access is also a little missing.’’
Hickey was the first openly disabled Housing New Zealand board member, serving from 2018 to 2019, but she was not reappointed when the ministry transformed into Ka¯ inga Ora.
Disabled people’s voices need to be centred, she says. ‘‘They clearly don’t understand access.’’
And that isn’t just about being able to roll into every room in the house. ‘‘Access for me is being able to go and visit my family, or being able to go and get to the doctor via the train,’’ Hickey says.
Hickey has two nieces in Auckland, one of whom has disabled children. She can’t visit them because their houses are too far away or not accessible.
‘‘We should have a multi-generational house, but we can’t, because there are none.’’
Ma¯ ori and Pacific people experience higher rates of disability and are also more likely to live in state housing, exacerbating accessibility issues. Wha¯ nau should be supported by the state to live close by or in the same house, Hickey says.
For some disabled people, the lack of accessible public housing or rentals leaves them with no choice but to move into emergency accommodation.
That’s an ‘‘absolute failure’’, Tesoriero says. ‘‘In recent years, New Zealand has been talking about a housing crisis affecting a wide range of people, but for disabled people, the housing situation has been at crisis levels for a very long time.
‘‘While we are not as a nation addressing these issues, then it sends a message that we don’t understand the need.
‘‘It sends a message that we don’t care.’’
‘‘When the target is so low, in my mind, it doesn’t really encourage innovative thinking about how you might remove those barriers.’’ Paula Tesoriero, right Disability Rights Commissioner
‘‘They have to wait until you lose it and then you can’t manage before they will approve. So it’s frustrating.’’ Dr Huhana Hickey, above PHOTO: RYAN ANDERSON / STUFF