We first met Lusi Faiva in August when she gave evidence at the Royal Commission of Inquiry into abuse in state care.

Lusi (who’s 54 now) was institutionalised at the age of two, after being diagnosed with cerebral palsy. She spent five years at the Kimberley Centre, a specialist hospital in Levin for people with intellectual disabilities (although not intellectually disabled herself). Throughout that time, she didn’t see her mother or any other family.

What shone through in Lusi’s story was her determination to be independent, to be able to live her life fully and on her own terms. She’s done everything she can to achieve that freedom — she found a job she loves, and she’s lived on her own since she was 22.

That’s definite progress from the days when disabled people were shut away in institutions that didn’t see them as individuals who were capable or even deserving of leading fulfilling lives.

But we shouldn’t be too quick to pat ourselves on the back for that. For, as Lusi tells Teuila Fuata‘i in this piece, our system of support for disabled people still has a way to go before it truly supports people like Lusi to live full lives.

 

I moved into my Mt Roskill flat when I was 22. It was the first time I’d had a real say in how I lived, or a place I could truly call my own. It felt like a dream come true.

When you’ve spent five years of your childhood in an institution where your disability determines how people treat you, you come to appreciate how precious freedom is. You yearn for it, and you do everything you can to fight for it.

Even after I was released into the world and went to live with my mother and her family, I was constantly looking for a way to be in the world as myself. To be free to make my choices and to live my life as fully as I could.

But it wasn’t easy or smooth — and it still isn’t. I think there’s an attitude that disabled people should be grateful for what we get, that we should be satisfied with what the system offers us, because it’s better than it was in the bad old days when we were all institutionalised.

My first real experience of flatting was in Royal Oak, in a shared house run by a disability support organisation (CCS Disability Action). The house was damp and had black mould on the ceiling, and there were four of us living there — three women and one man who’d been lumped together under the “disability” umbrella.

I don’t think anyone had given any thought to how we’d get on together — it was probably seen as irrelevant, unimportant. The other flatmates were all Pākehā in their early 20s. I was 21. The male flatmate was particularly difficult. He used to bring strange women home, punch the walls, and leave dirty stuff around the house. He was violent and abusive, and if we refused to do what he said, he’d hit us. Once, he even made us clean his room.

I knew I had to move out — and, luckily, with the help of my occupational therapist, I was able to find a flat through Housing New Zealand. It was comfortable and dry, and it had been modified just for me. I could use the bathroom and kitchen, and there was ramp access for my wheelchair.

It seems so basic, but in almost every way, having a safe and comfortable home changed my life. I didn’t have to live in fear of being abused, and for the first time, I felt a sense of freedom.

For instance, when I was living at the Royal Oak house, all four of us flatmates were put in a work scheme run by CCS Disability Services. On weekdays, a van would pick us up and take us to a matchstick factory on Mount St in the city.

Our job was to pack the sticks into boxes, and even though it was full-time work, we were only paid about $25 every two weeks. When I eventually got moved off the factory floor and into the office to help with admin, I remember feeling so lucky.

I hated the whole thing, but there was no option to do something else.

I wanted to protect myself from that, so when I got my Mt Roskill flat, I enrolled myself at Unitec to sit School Certificate. I’d gone to high school at Mt Roskill Grammar, but I was in the special unit for kids with disabilities, and we weren’t given a chance to sit School C. It was as if there was no point in us getting qualifications.

After I passed School C, I went on to study computer programming and Shakespeare at Unitec. I played sport, and competed internationally in Boccia, a para-athlete ball sport that’s similar to lawn bowls and petanque. I also joined a performing arts workshop for people with disabilities — and that workshop led to the establishment of Touch Compass, a disablity-led performing arts organisation where I work today as a member of the artistic panel.

Looking back, I can see that a lot of the good things in my life, including the relationships I have now, wouldn’t have been possible without the changes that came with having my own flat. Even today, I do all my day-to-day work for Touch Compass from my home office which is set up in my living room.

I’ve fought hard to live independently, to live fully as myself, and with dignity. But even after all these years, I can’t honestly say the battle has been won. I’m still fighting.

It’s an inescapable truth that my independence as a disabled person depends on the support system for disabled people working as it should.

And too often, it just doesn’t.

***

A typical weekday for me starts at about 7.30am, when one of my two main support people comes to help me start my day. She helps me to get out of bed, and to shower and get dressed. I can’t safely get out of bed and into my chair without her help. She also makes breakfast and lunch, and helps me with my daily medication. And she does the laundry and the cleaning that I can’t do.

She’s usually there for about two hours, and then I’m on my own until around 6pm, when my second support worker comes to help me wrap up my day. She makes dinner, does the dishes and cleans up, and then she helps me to get changed and ready for bed. Before she leaves, she helps me out of my chair and into my bed.

Then in the weekends, I have two other regular support workers, who also fill in when my main support workers are away.

All four support workers have been trained in my care. They’re all employed by Geneva Healthcare, which is funded by the government to provide my home support service. I’ve worked with one of them for 30 years, and another one has been with me for 10 years.

So far, so good. This is how it’s meant to be.

But at least once a month, sometimes more often, there’ll be an issue with someone failing to turn up. Or turning up too early in the morning (around 5.30am) so they can rush off to another client. Or not turning up till well after lunch to get me up for the day. Or, turning up at 5pm and wanting me to be in bed around 6pm because they’re expected somewhere else.

Often, I’m not told when someone’s not coming. Or I’ll end up with a random worker I don’t know and who hasn’t been trained in my care.

I know that no system is perfect. Things go wrong. But there’s a difference between one-off mistakes and a pattern of failure. And for those of us who can’t live without this support, those failures aren’t just an inconvenience.

When someone doesn’t turn up, and there’s no backup, and no response from the organisation you depend on, you’re vulnerable. You’re left feeling alone and helpless — and you’re not safe.

The last time this happened to me was the Saturday evening of Labour Weekend. My rostered support person didn’t turn up, so I texted her to find out what had happened. She told me it was her day off. So I called Geneva’s afterhours service, and when I finally got through to someone, I was told me they’d contact the rostered worker and get back to me. A couple of hours later, I got a text saying they’d left a message for the worker. Then nothing. I kept calling, but after three hours, I gave up.

I couldn’t get hold of anyone else, so I ended up having to sleep in my chair.

The next morning, when my regular support worker arrived and saw me in my chair, she called the office and told them that she would’ve come if they’d let her know what was happening.

It always takes a long time for me to communicate by phone. I have to use the Relay communication service, which means I type in what I need to say, and then it’s turned into an automated voice for the other person on the line. Because of this, my file with Geneva says text and email is my preferred method of communication. But often, the afterhours service doesn’t respond to texts and emails, so I always call them directly.

Although there’ve been many incidents like this, I’ve filed formal complaints only twice with Geneva. Once was in 2016, when they sent a male support worker to my house even though I’d specified it was inappropriate because I get help with showering and dressing.

On that occasion, when I texted Geneva to say they’d sent a male and it wasn’t okay, they replied that I should just let him in. I just texted back: “No.” My regular support workers have keypad access to my house, but he kept knocking loudly on the door asking me to let him in, even after I told him to leave. Eventually, Geneva found a female support worker who was in the area. I don’t remember exactly when she got to me, but I was distraught and crying by the time she arrived.

The other time was in 2019. There’d been several occasions towards the end of that year where no one turned up and I wasn’t told. But the worst was when my support workers failed to come two days in a row, and I ended up falling and hurting myself because I tried to get out of bed to go to the bathroom.

It was a Sunday morning and I had plans to go out. When no one arrived, I called Geneva. They said they were trying to find someone, so I waited. By mid-afternoon, I was still in bed and realised no one was coming. When the evening person also didn’t turn up, I tried to get out of bed to go to the bathroom. I fell, twisted my ankle and hurt my leg.

It still makes me cry when I think about it. I was just trying to get to the toilet after being in bed for nearly 20 hours. Instead, I had to call the ambulance. They found me on the ground and wanted to take me to hospital. I was so angry and hurt and humiliated. They cleaned me up, and then I told them to put me right back in bed. I didn’t want to be anywhere else but home.

The next morning, the support worker failed to turn up again. I didn’t have any will or patience to deal with Geneva, and I was scared of hurting myself again and being stranded. So I ended up asking my cousin Aniva for help. She works in aged care support. But she had to find someone to look after her one-year-old daughter, and then get across Auckland from Manukau.

So I put in a formal complaint. Geneva investigated itself, and sent me a log of what happened. And they apologised.

They said things like: “We view this as an opportunity for improvement”, and “We appreciate the significant distress this issue created for your and sincerely apologise”. They said that my complaint had been “escalated to our National Client Services Manager”, and that someone would be in touch to offer and explain their “online client portal, My Homecare”, an online platform that “allows clients to have access and visibility to their care schedule”.

The whole process was like a slap in the face. I mean, it’s total bullshit to get a complaints process that gives me a log of Geneva’s records while I’m on the ground in my bedroom hurt and calling an ambulance. And then to have an “online client portal” held up as a way of improving things — how is that taking responsibility for the bad communication and services?

I hate having to lay out why support services are important to me. Why I need help moving from my bed to my chair, with going to the toilet, with getting dressed, with showering, and with making food. And how it’s not just unsafe when I don’t get access to those things, but also a breach of my rights. Even more, it takes away from who I am as a person.

So much of my life, and the contribution I get to make through work, the communities I’m part of, and the relationships I have with friends and family, depend on having regular and reliable home support. It’s why speaking up about bad services and attitudes is important — even though there isn’t a heap of alternative options out there.

And yes, I can continue to follow up with Geneva, and I can look at laying a complaint with the Health and Disability Commissioner or the Human Rights Commission. But I’m also exhausted.

My living situation and support needs have been the same for 32 years. I shouldn’t have to continually outline the very real consequences of when those aren’t met.

And both those complaints to Geneva left me feeling totally discouraged — and that’s with help from family and friends who wrote letters to support me. Yes, things improved briefly, but, right now, the way things are going feels dangerously close to four years ago.

This isn’t happening only to me, and it isn’t happening only with Geneva. I know other people with disabilities who’ve had similar failures with home support. It’s happening in different parts of the country and with different providers.

It makes me think that those in charge of disability and care services have no real understanding of what’s going on — and what it means for people like me to be stranded in our beds or chairs, without access to food and water and the bathroom.

I understand that disability services and support are under-resourced and under the pump. But does that mean we should just accept this state of affairs? Do we have to keep accepting less?

If we didn’t know it already, the inquiry into abuse in state care has made it very clear that institutional care was harmful to a great number of us. It consigned too many of us to lives of misery.

But is this the best we can do?

 

Lusi Faiva (Sāmoan) is a performing artist and founding member of Touch Compass, a disability-led professional performing arts organisation. She was born in Wellington and lives in Auckland.

As told to Teuila Fuata’i, and made possible by the Public Interest Journalism Fund.

© E-Tangata, 2022