Image description: Áine(they/them) seated at the front of a room full of Manawanui staff with Simon assisting her, seated at her side holding a microphone.

At our recent Team Day, we were joined by Áine Kelly-Costello(they/them), a Manawanui customer. They shared their perspective on disability support and the role of Individualised Funding hosts. Their kōrero was thoughtful, grounded in lived experience, and offered valuable insights for our team.

Tēnā koutou. Nō Aerana, nō Kotirana ōku tūpuna me ōku mātua. I tipu ake au ki Aerana, ki Kānata, ki Aotearoa hoki. He Pākehā ahau, he tangata whaikaha ahau, ko Áine tōku ingoa. Nō reira tēnā rā tātou katoa.

I want to acknowledge Simon for the invitation to present to you today and acknowledge the time of reflection at Matariki.

I was born blind in Ireland in the 90s. I went to school and grew up in Ireland, Canada and from age 9, Aotearoa. With articulate advocates, my parent's income security and an interest in school on my side, I had the privilege of managing well in the education system. I point this out because systemic inequities mean that's still not the norm for many disabled people, and it makes it easier for me to talk to you today.

My kōrero is grounded in and deeply informed by the relationships I have in the disability community. This is intrinsic for me because these relationships are a way that I - we - practise care, practise looking out for each other in a world which is increasingly hostile towards our existence, let alone our thriving.

When preparing for this presentation, I reached out to find out what was on top for the disability community I am connected to, and I want to mihi to the twenty or so people who offered insights shaping what I share today.

I also mihi to my close disabled friends, we check in on each other often, we know we are there for each other when government or sometimes family isn't, and what I have learnt with and from them also deeply informs my presentation.

I want to offer some thoughts on the role of IF hosts, that I hope may be useful in your reflections and I love that you have the practice of coming together to take stock and reflect.

But first I'd like to step back to help position IF hosts within the complex, inequitable landscape of disability support.

So let's start there, thinking about "disability support", in lower case - about the care and support we informally offer to disabled people, and/or as disabled people. We do this within our whānau and our chosen families, often within our wider communities too. And we do so out of love.

There is a physicality to care and support, skills that are needed to uphold dignity. There are also the emotional and wairua(spiritual) parts of our wellbeing, our connection to community, fostering these things too are forms of care.

So, these kōrero we have about care and support sit much deeper than the demeaning narratives the Government have been putting forward or implying about care as a financial burden. At their core, care and support can be a recognition of interdependence, that we can and should all do what we can to nurture the relationships we have with each other. At its best, this is something beautiful.

Of course, our reality is more complex than that. Sometimes the match between our support needs and the people we can find who are willing to try and meet them, doesn't work out despite how much we'd like it to, even when there's good intention on both sides. So, the balance isn't there.

This is tied to the fact that all of us are reliant on a certain amount of income to survive, let alone to live comfortably. And the societal devaluing of care work means having access to that income is not remotely a given, not for whānau, nor support workers.

When the State tells us we as disabled people seem to be doing well because we have lots of what they call "natural supports", support of our whānau and friends and wider community, that's only true if the support arrangements feel dignified, comfortable and safe for us; and, if those carrying the bulk of that support work are in a good space with enough to live on themselves, and the resources to recharge. On the other hand, if any of us, disabled people or whānau or paid support workers, are living in poverty or are always on the edge of burn-out, the system takes us all down together. I'll repeat that: if any of us, disabled people or whānau or paid support workers, are living in poverty or are always on the edge of burn-out, the system takes us all down together.

I want to mihi to all the mostly women and femme carers and support workers who should have gotten better pay under the recently cancelled pay equity claim. I am glad that my IF does allow me to pay my support worker properly, more than the living wage, because the work she does to help me out with cleaning and getting to appointments is valued by me. As someone with long covid, it means I have more energy for talking to you today rather than spending it on vacuuming instead. As a blind person, I'm not stressed that I might unwittingly miss an ant infestation in the kitchen.

On the other hand - when our govt doesn't support the people who support us, the crappy pay and crappy work conditions enforced upon us by rules like not allowing support workers' meals to be funded or to use funding for respite that assists them to continue with their roles, then they struggle, and disabled people struggle. Specifically, the chances of disabled people being abused go up. The chances of disabled people not being able to find or retain reliable, trustworthy support workers go up. The chances of the wellbeing of those most reliant on this support deteriorating go up, a lot.

There are also a lot of disabled people attempting to survive outside of access to funded supports. Some of my best friends are disabled but aren't eligible for disability support from the government. Whether because they don't have a recognised diagnosis, because their conditions are deemed out of scope or they're deemed to have enough "natural supports". Some of my friends use disability support now that they have residency status but didn't dare try while on a student or work visa lest their residency chances be jeopardised. Because our immigration policy judges you based on how much the medical assessors decide you might cost the State. Some of them work their butts off and try and survive outside of the bureaucracy of income or disability support, and are at perpetual risk of burn-out, relapses or crashes as a result. They don't even qualify for Household Management because they supposedly earn too much.

So, this is the damage government policies intent on saving money do. They take us down together. They make us live precariously. Those who are comparatively lucky enough to access disability support as I am live in fear that, despite having done nothing wrong, we're one review away from losing funding. We live in fear of the consequences of being unable to compartmentalise our entire lives into boxes called " Personal Care", "Household Management" and "Respite". Fear that we'll have forgotten about, or indeed not understood, some new regulation or other, and that a claim won't go through. There is fear and   frustration, because in these policies, the devaluing of the dignity and self-determination of disabled people is clear to see. This is ableism.

As an IF host, the great majority of these systemic factors are well beyond your control. I'm very aware of that. But I've intentionally spent half of my time talking about them for a reason. We all have different types and degrees of privilege. I don't want to make assumptions or flatten your own identities and experiences. But it's important to be aware that many of the disabled people and whānau you will be interacting with are the ones on the sharp end of all the wellbeing statistics, are among those with the least privilege in many areas.

For instance, many will find the densely worded funding regulations that funding hosts are charged with administering gobbledygook. Many will find that trying to advocate for their needs in such inflexible systems, including to IF hosts, takes up all the energy they can summon. Many will find these advocacy processes and/or the service provision unsafe for them culturally but be unable or afraid to articulate that. Even for those of us who are Pākehā like me, most of us have grown up with at least some degree of shame around saying what our needs are out loud and asking for them.

So - interacting with an IF host staff member who is genuinely listening, as patiently as possible, and can help a disabled person to make the most out of their funding goes a long way. Part of this is being attentive to people's access needs. Some people will prefer only written communication and receiving a phone call will be stressful and overwhelming. Some people need plain language. Some people might need more time or assistance to make decisions. It's important to make sure that disabled people are well-supported to make informed decisions, so avoiding making assumptions about what would be in their best interest.

As things stand, our IF hosts are charged with making decisions about what we're eligible to use our funding for. I'm very aware hosts don't design the purchasing guidelines but do interpret them. Every interpretation decision is a choice: between falling into the narrowly prescriptive checkbox type mindset the guidelines encourage you towards, or the strength of conviction that disabled people and whānau are 99% of the time, making genuine requests for getting stuff that's more necessary or more expensive because we're disabled or caring, that will make our lives easier or better. Being a good ally to disabled people and whānau looks like trying to work with us, rather than against us, using your knowledge to help us find a way to get the most out of our funding, whatever that looks like for us.

This is what it means to uphold self-determination of disabled people and a person-centred approach. These, in conjunction with the importance of relationships and supports being easy to use, are among the principles that the Enabling Good Lives approach are based on. The idea of EGL had always been that the need was not only for more funding, but also for a mindset shift in how government, providers, hosts and all those working with disabled people around allocation and use of funding think about their roles.

A friend offered this example which I share with permission. There are a lot of folks in our community with particular dietary needs largely resulting from food-related eating disorders or health conditions which supermarkets don't cater to. Sometimes, the ready-made food from cafés or restaurants does work, where the ready-made food from supermarkets, doesn't. So, my friend was saying they had the experience of a host telling them the ready-made meals had to come from a supermarket even though the Purchasing Guidelines aren't actually that prescriptive, and even though the supermarket food didn't meet their needs. So, the importance of listening, and trying to work with, is clear.

I also want to turn to some boring but important points that stand between disabled people and a stress-free process for accessing funding, as highlighted to me by the community when I sought feedback in preparing to speak to you today.  If you need an AAC (augmentative and alternative communication) device to communicate with your support workers and uphold your obligations as an employer but you don't have access to one, it's hard to be a good employer. So, it's helpful if your host assists in advocating for you to get the funding you need for the AAC device. If you're a screen reader user and the IF host's portal for uploading your expenses is sort of usable but difficult and confusing, it's stressful to submit your claims. So, you want your host to both improve the user-friendliness of the portal but also ensure there is training on how to use it, specific to screen reader users. If you are reliant on assistance managing your funding via the Payroll service but you also need all the funding in your allocation, a $15 per fortnight fee is a barrier particularly if you are not submitting a timesheet every fortnight. So you want your host to do what they're able to recognise the acute need for the scarce funding you have and keep payroll fees to a minimum.

In conclusion, keeping open a line of trust with disabled people and whānau will always need a lot of intention and effort. It will take patience, arguably more than is fair, because of the inordinate stress that the rest of the funding system places on us. But I hope that being able to truly listen and do the best you can to assist within the systems we're all working in will also be the best part of your jobs.