Watch the Purchasing Guidelines community hui
You can now watch the recording of our Purchasing Guidelines hui on 24 April 2023 if you missed it.
Thanks to Disabled Persons Assembly external URL Chief Executive, Prudence Walker for facilitating, and thanks to Carers New Zealand external URL Chief Executive Laurie Hilsgen for volunteering as a panellist.
The recording has NZSL interpreters and captions are available. A transcript is available below the video and you can also download the Purchasing Guidelines transcript (DOCX 62KB) word document.
You can also watch the video directly on Youtube - Purchasing Guidelines hui Youtube external URL
Please note, we are still working on the responses to questions we didn’t have time to get to in the chat and will share these as soon as they are ready. Answers will be added to our Questions and answers webpage.
Kia ora everyone and welcome to this hui. I'm Prudence and I'm the Chief Executive of the Disabled Persons Assembly of New Zealand and I'll be your facilitator tonight.
I'd like to start off with a karakia. Tūtawa mai i runga, tūtawa mai i raro, tūtawa mai i roto, tūtawa mai i waho. Kia tau ai. Te mauri tū, te mauri ora, ki te katoa. Haumi e, hui e, tāiki e! Come forth from above, below, within, and from, the environment, vitality and well-being for all, strengthened in unity.
Kia ora, as I said, I'm Prudence and I'm the Chief Executive of the Disabled Persons Assembly of New Zealand. And it's my privilege to facilitate a number of these hui now. I'm just pausing for a moment to check that we're all okay with the sound as I see a question popping up in the chat.
So if somebody is hearing me, if they could just confirm in the chat. Yep. Okay, we've got confirmation of that. I'd just like to go through a little bit of housekeeping and then let you know what the agenda tonight will be, and how the series of events. So you probably will have had an announcement as you joined or shortly after that.
And as you've been informed leading up to this in your registration that the meeting will be recorded, and then also, sorry. You will have seen that message pop up. The agenda tonight will be that shortly, I will hand over to Amanda Bleckmann, who will lead our panel this evening and start off with some contextual introduction as to why we're having this hui and a bit of background on everything.
Then we have a panel of the people who are most informed about this from Whaikaha’s end, and they will introduce themselves as I hand over. So they will each talk through a little bit about the Purchase Guidelines. And then after that, many of you have sent in, with your registration, some questions that you have for Whaikaha and for the panel.
And so we will start off with some of those questions that we had received prior. But in starting the Q&A session, I'll also explain how if you have any questions that come up, how you can ask those. Now, in previous hui, we haven't been able to answer all of the questions in the hour that we have available. However, any questions submitted will be collected and they will be answered by Whaikaha and made available to people after the hui.
If we don't get to the questions you had today. So with that, I would like to hand over to Amanda.
Thank you, Prudence. Thank you, Prudence. E nga mana, e nga reo, rau rangatiratanga mā tēnā koutou katoa. Ko Amanda Bleckmann tōku ingoa. Kei Whaikaha - Ministry of Disabled People ahau e mahi ana. Talofa lava, kia orana, warm Pacific greetings, e ngā reo tēnā koutou, tēnā koutou, tēnā koutou katoa.
My name is Amanda Bleckmann. I am a Deputy Chief Executive at Whaikaha - Ministry of Disabled People. I'm pleased to join you all here today. I have blonde hair tied in a ponytail. I'm wearing clear glasses, pearl earrings, and I am wearing a black shirt. I'm sitting in front of the screen. When I'm standing, I'm 168 centimeters tall.
Before I begin, I'd like to say thank you to all of you for attending tonight and extend our collective thanks to the team that has put this hui together tonight.
Firstly, this is the first of many conversations. Whaikaha and the team here tonight are here to listen, we want to make things better for disabled people and their families. We won't always get it right, and we will keep working with the community, disabled people and their families. We will keep hosting forums like this, if this is what is helpful.
So I'm going to hand over now to the panel to introduce themselves, Loren.
Kia ora Amanda kia ora everybody. Ko Loren Savage tōku ingoa. My name is Loren Savage and I work at Whaikaha as a senior advisor. A visual description of me, I am a physically, visibly, physically disabled woman. I am wearing black glasses and a blue, white and black striped top with a very plain background.
I am a Pakeha woman and I have brown hair and I’m wearing a headset. It's an absolute honour to be here, to be supporting this kaupapa today, and I think it's really important that I mihi to the whānau and disabled people and members of our community that have been involved in this kaupapa.
Clearly, looking at the numbers of over 100 people in attendance, this evening. It is a really important one. So I'm looking forward to continuing this kōrero with you throughout the evening. I'd like to pass it over to my colleague, Vic. Kia ora. My colleague Vic, who's on mute.
Mute [laughter], kia ora, ko Vic Smith tōku ingoa. I'm Vic Smith, I'm the Lead Communications Advisor for Whaikaha and I lead the mahi for putting together the Purchasing Guidelines we are talking about tonight. Visually I'm a blonde woman in a beige top, probably not a great colour for me to be wearing on screen. My background is lit up.
I hope you don't see the beer fridge in the background, that’s embarrassing. And I'm very, very, very, very pleased to be here tonight. I worked in the establishment unit as the parent lead, I am a parent of a disabled child and a recipient of Individualised Funding and Carer Support. So thank you I will hand over to Laurie.
Thank you Vic. Kia ora everyone, hello, I see a lot of familiar names in the list of attendees.
I'm Laurie Hilsgen, I'm the Chief Executive of Carers New Zealand. I support two family members with disabilities and I have a disability myself. In terms of a visual description. I'm a mature Pakeha woman with greying blonde hair, wearing a purple and black striped dress.
And I'm here tonight primarily about concerns about Carer Support and Respite and the confusion and difficulties people are having in that space.
We're spending a lot of time doing advocacy around Carer Support. People need clearer guidelines and communications and myself and others in the NGO world are working together to get improvements there with Whaikaha and Te Whatu Ora. I just want to make it clear to you that I am here tonight as a volunteer and advocate, Whaikaha hasn't paid me to be here. Thank you.
Thanks Laurie. So I'm just going to start by saying that Whaikaha focuses on listening and partnering with disabled people and families so that you can inform policies and practices, so that you can make decisions yourself on the supports that will enable you to live your own good lives and enhancing mana and self-determination. At Whaikaha we have heard that you want more guidance around the Purchasing Guidelines and how you can spend the funding that's being allocated through individualised funding or personal budgets.
We want you to have a good experience when you engage with the system, whether that's with the NASCs, the hosts, or the EGL sites, or with any providers. I'm going to start with letting you know where the Purchasing Guidelines came from. The Purchasing Guidelines were originally developed for Enhanced Individualised Funding, which has been available in the Bay of Plenty since 2011.
Many of you will be aware that we introduced the Purchasing Guidelines into Individualised Funding and Carer Support at the time of the Covid lockdowns, and that was so that people could get a break or buy things that helped them when support workers weren’t able to get to disabled people and families. We heard loud and clear that this was a great benefit.
And so we worked really hard to make this flexibility permanent. However, this has also meant that people at times have been confused about how the Purchasing Guidelines apply in different situations and have had some inconsistent messages coming from different parts of the system. So when the rules were written or drafted back in 2011, they were to be applied at a much smaller scale in the Bay of Plenty, in a facilitated context in the Bay of Plenty, and in a context where it was easy to establish, or easier to establish a network of practice to maintain some consistency in how the principles and the Guidelines were being applied.
And this would allow some consistency in the interpretation of the principles while allowing maximum flexibility to do what's right for each person in their situation. So in moving from that smaller scale to the national scale that we have now, we've dropped off some of those features for success and we know that that's been compromising the experience for a number of you.
So we want and expect flexibility that's available through the Purchasing Guidelines to achieve better and tailored supports that are less intrusive and are more successful at supporting disabled people to be included, to participate in society, and to live independently. So it's not what something is, but what it's used for that makes it a disability support. And if we want people to experience ordinary life outcomes, we will favour ordinary life looking things to support disabled people.
So this focus on ordinary life approaches makes it much harder to distinguish between funding uses that are clearly disability support and uses that have slipped into paying day-to-day living costs, and costs that most New Zealanders might encounter. And so I know that maintaining the flexibility that has been gained is important to many of you. It's important to Whaikaha.
And so our shared challenge is how we best provide confidence that the funding is being used for the purposes set for it and providing further guidance on the purchase rules is important, but clearly it's not the only option and nor is it going to resolve all of the issues. So some of the changes you might be looking to see, are most achievable through system transformation.
I'm conscious that many of you are tired of waiting for system transformation. So whilst we talk a little bit about what opportunities that presents tonight, I want to focus on the foundations that we can lay, through working with what we have right now. So I'm just going to give you a little bit of background, or a little bit of information around what Whaikaha is currently working on.
Some of you will know that the government has made available $100 million over four years to support the initial expansion of the Enabling Good Lives (EGL) approach. There are a number of conditions that have been placed on Whaikaha accessing to that contingency, and they relate to things like having a new operating model and a plan for total transformation before the funding can be accessed.
So in short, we can expect that the drawdown of the contingency will allow us to make more broadly available, more of the kinds of support for personal budgeting available in the EGL sites.
My hope is that this will allow us to shift the balance away from monitoring and decision making after the fact, back towards things like planning up front and preventing issues by discussing things early, supporting people well and upskilling them when they first take on the management of flexible funding and flexible budgets and personal budgets. Connecting others that can support them to succeed and importantly, empowering more people to exercise choice and control over their support.
So I'm just going to talk about the purchase rules themselves. Whilst we are providing more guidance on the purchase rules, the fundamentals haven't changed and that is that any expenditure must be linked to the good life that you are creating through the purpose of the allocation. So either specific goals or plans agreed with your NASC, your host or EGL site, or in the absence of those, the purpose of the service specification, the allocation is made under.
Secondly, the expenditure must be disability related. It must address a gap in accessibility or meet another direct challenge related to your impairment or meet higher costs arising from mainstream options being less available or more expensive to you.
Thirdly, it must be cost effective, so it must be proportionate to the challenges you're seeking to overcome, including leaving you with sufficient funding to last until the end of the allocation and be priced moderately within the range of things that will work for you.
And it's also part of the rules that it mustn't be something that another agency will fund in a reasonable timeframe, or subject to another exclusion. So hopefully the guidance that we've released will help you explore each of these ideas. And of course, in taking a principle based approach, what works in one situation may not work in another. We are together continuing to learn how we can make this better work for people.
And so tonight we are happy to explore how the Purchasing Guidelines might apply more generally. This is not the forum to seek a review of any individual decision. And whilst we might talk about how we apply the rules generally, if you do have questions about your specific situation, you will need to follow this up with your host organisation or through the usual review channels.
So Prudence, I can see that we've got a whole range of questions coming in and I think we've got the first question.
Kia ora, just waiting for me to be back on screen. Okay, so we do have a number of questions, as I said, that have come in prior to us meeting tonight. And then I can see that there’s questions coming in also.
So keep your questions coming in the chat if you do have a question or feel free to raise your hand if you prefer to ask it yourself, but we're going to start with the pre-prepared questions that people have submitted. So the first question I have is: What can I expect from my host? and what does a coach do?
Kia ora Loren speaking. Thank you for that question that came in, and I think Amanda touched on it just before as well, that one of the really crucial roles of your coach and your host is helping you be aware of what you can and what you can’t purchase within the realm of what disability costs are. And I see that there are a few questions coming in around that we will get to at some stage, hopefully.
The IF hosts are there are to support, to make sure that you essentially use your funds and that your budgets align with your plan that you've agreed on. They are across this a lot more than what, individual situations, then what we are here at Whaikaha. So they are aware of your personal situation and the likes- they can also provide you with additional services such as payroll service, paying support workers on your behalf, deducting ACC levels, calculating sick leave and holiday pay, etc.
So I hope that helps in terms of the question that the person had. A coach, sorry just going to the second part of that question, a coach will help you with advice and guidance around how you can use your budget and how to set the budget based on the allocation that you have.
Because again, going back to what Amanda said, it is quite important that your, that your budget can last the allocated time so that you can carry on getting supports throughout that period.
They also have the option to offer suggestions and ideas in regards to employing support workers and what you need to think of when you are looking for particular support workers and becoming an employer.
Kia ora. Thanks for that Loren. Okay, so the next question that I've got is - Why are some regions funded through the DHB model still, and others Whaikaha?
When will there be one approach to disability funding for all?
Amanda speaking. So New Zealand has about five different disability support systems serving different groups of disabled people and their whānau. Some of the reasons for this are historic, some are legislative, and some have a stronger and weaker basis in reasons that matter today. So while there’s a debate about which system some communities of disabled people should be eligible for.
The general expectation on Whaikaha is that we are a lot further into successfully transforming the system we are responsible for, before opening the question of bringing other systems in more fully.
Loren speaking sorry Prudence, I think you've popped on mute again.
Thank you Loren. Thank you for that Amanda. Now the second question is, sorry, the next question is similar. So you may not have anything to add, but I'll ask it anyway in case you have something to add or somebody else does.
And that is - When is Whaikaha going to instigate an EGL approach to funding across New Zealand?
Kia ora Amanda speaking, I will add to that. So as I also said in my introduction, is that shortly Whaikaha will be presenting a Cabinet paper outlining our plan for how we will continue to transform the disability support system using an EGL approach.
This is, this is a small but crucial launchpad for the next phase of transformation and further changes, and the contingency I referenced earlier is only a first step in funding the transformed system. So we expect through that and depending on how it is used, it ought to roughly double the number of people accessing EGL personal budgets. Thanks Prudence.
Thank you for that Amanda. The next question, I have, and I'm not sure who’s best place to answer it, but just jump in if that is you. Why does IF not get paid directly to the clients or their agent like other support service funding?
Okay, I'm happy to answer that as well. So other support service largely is not paid directly to people.
However, some people on EGL personal budgets do have the option to directly manage that funding, and that is a direction that we wish to expand on. There can be a misunderstanding that without a host being involved, there is no monitoring of personal budgets. That isn't the case, EGL sites have a role in ensuring that personal budgets are used for the overall purpose the money is made available for.
There's a lot to learn there about taking an approach that makes greater use of upfront planning and support rather than relying on monitoring and making decisions at the time of purchase. So for now, IF host providers do have an important role in administering funds and supporting IF recipients to use their funding to best meet their individual circumstances.
And we will consider through system transformation what the right balance of roles is in supporting personal budgets and where those roles best sit. Thank you.
Thanks Amanda. So have the Purchasing Guidelines changed?
Kia ora Prudence, thank you, Loren here, jumping in here quickly, I think Amanda did reference it in her introduction, but acknowledging that some of these questions did come in beforehand as well, that essentially the Purchasing Guidelines themselves have not changed.
We've just updated the language and the guidelines around them and the rules that determine if you can use your funding on particular purchases easier to understand.
Now, I have just looked in the chat, some of the comments again around those specific queries of what you can and cannot purchase your budget on. I just want to go back to the point that I made before, and I get that people are joining in, and that is really a conversation that you have with your IF host or NASC, because what may be deemed as a- or what may be seen as a disability cost for someone and myself, maybe someone with a similar disability to me, might not be a disability cost for somebody else in our community, depending on their circumstances.
So I understand the frustration with not having exactly a ‘yes and no’ and ‘what's in and what's out’, but that is the value of having those hosts there to support you with those kōreros. Thank you.
Kia ora Loren. Yes, and of course these questions did come in before the introduction and everything, but just for clarification, even if we have covered them.
So can somebody talk a little bit more about how the guidelines were developed?
I can probably jump in on that one. So the guidelines themselves were already an existing framework which Amanda spoke to.
And what we did was we went into consultation with family, whānau representative groups, the ODI whānau group, Carer Support working group, some influencers, people will know them from I funds, administrators and other parents, parent groups that we spoke to, basically, and the hosts actually, so we had a meeting with them as well to hear about how we would be able to best support their staff to, know with the guidelines, because ultimately the goal that we had for the guidelines, you know, wasn't that there was going to be radical change, but we were hoping to simplify the language, make them more straightforward to use, and also provide real life examples of how those rules could be applied in actual real life scenarios that we've seen, that we hoped sort of illustrated for people, oh okay that's how that decision was made to use that funding.
It should also be noted that the guidelines aren't in isolation of themselves. We've updated the content on our website for Carer Support and Individualised Funding to make them a lot clearer as well. So we hope that when people are using the guidelines, as they are currently, they could also be taking a look at those two pages as well to see how they work in context of each other.
And we're also completely open to growing the examples that we're providing. We understand that we've only got three or four on each page and it probably is useful to have even more that could provide illustrative examples as to how the funding rules, as such, can be applied to your particular situation, for example. So, you know, one thing that's been interesting in the development of the guidelines is that in all the groups that we spoke to, we've never said that the current way they've written is set in stone.
The website itself is a living project. So feedback from tonight would be really helpful if there’s areas of the guidelines that people are still finding the language too grey and confusing. We're more than willing to sharpen up that language to make it easier for people because that was 100% our goal. To be really clear and simple and easy to use.
Thank you. Kia ora Vic. Now, I know that it's been mentioned in various answers so far, and particularly, Loren, you touched on it before, but I wonder if there is any expansion, somebody has asked, what can I use my IF for?
Okay hi, me again. Well, I guess depending on the allocation that you have had provided to you from the NASC and the conversations that you've had with your host, there’s an individual service plan that gets set up at the beginning of your use of your funding and by using and having those clear goals and outcomes as written as a plan with your host, then that is the way that it will help you understand better, hopefully through coaching and guidance with your host as to how you can use your funding.
You know, as Loren touched on, is often that we all talk, I know that I definitely use my disability forums. My son is actually autistic, so I use autism New Zealand’s forum a lot on Facebook. And I do use I funds to get help when I'm trying to find the right support for my son.
But, you know, clearly understanding that, you know, the old adage, you've met one autistic person, you've met one autistic person. So the support and guidance that I need in my whānau and for Luka is very different to someone else. So how you can use your Individualised Funding is very, very specific to your individual situation.
And that's where we would advise that you speak to your host about that, does that sound right Amanda?
So I know we have had - oh, sorry, Vic thank you for that. I know we have had, you know, a number of questions that still kind of probe more on the what can I use my IF funding for? And I don't know if your answer is any different in relation to those, but for example, there’s - I might just lump a few together and then maybe you could address them a bit together, because we've got a question about, can I use my funding for holidays and overseas travel?
And then similar to that, somebody has said, I want to go overseas for my respite. What can I claim under IF respite for this trip? And there's another one, but perhaps if we go to those two on the travel and everything to start with.
Hmm I might need help with that one, I know that overseas travel, the queries that we've been having, the hosts have been having, and the forums that have been online, have definitely spiked recently.
So there’s obviously, you know, post Covid, a lot of people thinking that overseas travel is the right use of their funding. Amanda do you have a build on overseas?
Thanks Vic. So I'm not going to comment on individual situations in this forum because every situation is unique.
And so I'm just, I'm going to talk about the way to work through the rules. So you really need to be thinking about, how does the purpose of what you want to fund line up with the purchase allocation?
So for example, is this paying for personal care while you're away? And the second is, what the additional cost that you incur as a result of the disability and the trips, or do you consider the entire trip is only required as a result of the need for respite?
And then thirdly, how is that means of supporting you on the trip proportionate to what you require? So put another way, why is this trip overall a cost effective use of respite funding compared to other uses? So you would be going through that. And then fourthly, is any of the support that you’re seeking available from another organisation or part of another organisation's responsibility to deliver?
So it's just working through those four rules. You might notice that most of these questions are questions you would ask yourself anyway, to make sure you are getting the most out of your support, and whilst they can sound like a lot, we tend to find that it's usually only one or two things that aren't obvious upfront, or that might require some thought.
And so in general it's likely that if the disabled person is traveling, then they might use their funding to cover the costs of the support being available and traveling with them, and that will depend on the purpose of the allocation. And then the other question was, I want to go overseas for my respite, what can I claim? Was that the other question Prudence?
Okay I’ll read that back, what can I claim under IF respite for this trip? So again, I can't determine how the rules would apply in an individual situation in this forum, and I'd encourage you to explore that with your host in the first instance. But what I can say is to meet rule one, you would have to be clear about how this would be creating a break for you or for the disabled person, you can be most confident that you’re meeting rule two when you are paying the cost of someone else providing the care you usually would.
If the cost of alternate support is met then to meet rule two, you would have to be clear that this trip is a holiday, on top of the family's holiday that you might usually take overall, to make it clear that the trip is needed for disability related reasons. Overseas trips might be more cost effective respite when they also create something for the disabled person, or because the break is more likely to be successful, but the generally higher costs of traveling overseas might limit how cost effective trips away overseas are.
So we would just encourage you to work through those purchase rules. I’m aware that overseas trips have been a trend in the use of respite funding and that this is an area where people have often been concerned about what they see as inconsistent approaches from the system.
So we absolutely agree. We have been doing some learning together. Overseas travel, this kind is one of the areas which if we get wrong has the potential to undermine the credibility of flexibility and funding generally. And we know that one of the reasons for the increase in trips away or overseas appears to be because of a large number of families have had unspent IF and Carer Support budgets as a result of the disruptions from COVID.
And we know that people will escalate to Whaikaha to seek the costs of an overseas trip as an in-kind contribution for support that they have delivered at no cost. So generally if that is a situation that you think you are headed towards. It's more appropriate to establish a paid family carer arrangement and then the income you receive can be spent as you would your other income. And large purchases that are recognition of work done rather than wages, will often be a struggle for the purchase rules because they will have tax implications.
Thanks for that, Amanda. Now another question about what funding can be used for, but this time it's saying can funding be used to pay for therapies?
Vic? Or do you want me to?
Yeah sorry, I’m just unmuting myself. Yeah, I'm not sure, sorry Amanda it’s not one of my areas.
Nope that’s okay. So again treatment and management of conditions is, generally speaking, is funded through Te Whatu Ora and the health system or through ACC if the need arises through a personal injury. There is some leeway to consider if a therapy is part of disability support and the main rule that you're likely going to have to think
about for therapies is rule four, and that is whether this is something that can be sought through another agency or from a specialist service such as behaviour support.
Can I hop in on that one Amanda? Specifically about Carer support because this has been discussed in the NGO Carer Support Solutions Group with Whaikaha and Te Whatu Ora, is that family/whānau carers have very low wellbeing and they often are doing a lot of physical support, like lifting and transferring and lifting of heavy things.
And so we've discussed that therapy should be included as a legitimate cost for Carer Support to support the physical and emotional wellbeing of carers, so that they can continue doing what they do. So is it a matter of different parts of the system looking at therapies in different ways? I think that's part of the confusion that people have.
Thanks Laurie. And again, which is why we are not saying yes or no and we want you to provide guidance around how to work through the rules.
Thanks for that team. We now are going to go to some of the questions that have come in since we have been online. And one I have here from Lynn asks, am I allowed to buy a smartwatch instead of having the awful falls down button which St John provides?
I hate the look of it and it is not something which I would normally buy, but I've been told I should have one because I am at a bad falls risk. So I guess I'm interested in the answer for this because I'm into technology and, you know, making sure that our support technology doesn't have to be, kind of the real medical type stuff.
So is there room for people who are IF funded for things such as smartwatches? If that's a need.
Yes, this would be, I mean, not that we can say yes or no on this sorry, but I think what the correct answer to that would be, because this has come up on other forums, that you know, for want of a better way of putting it, should we need to compromise our life, you know, the way we live our lives with compromise tools, if you like, because we’re disabled, you know, and no one is saying that.
So through the application of the rules, something like a smartwatch would be something that, you know, if you follow through, as Amanda was doing, in stepping through the one, two, three, four, you know, and it's something that you could tie specifically to your disability and also applying the EGL principles of mana enhancing you know, so if this person feels, doesn't want to have a big St Johns around the neck and would feel better and more confident being out in the community, and that would help with also ensuring that as they are fall risk they can get the support they need instantly through that device.
Then I think you would be able to apply the rules that are in the guidelines as you go getting that funding drawn down for that purchase.
I think Lynn's clapping.
Yeah, well I think it talks to, you know, one of the things that when we were writing the guidelines, came through, some of the feedback was that people felt that just because we say cost effective, for example, rule number three it says purchase something that is cost effective, that for some reason they’ll interpret that as us meaning the cheapest option and it’s definitely not what we're saying.
What we are saying is, you know, obviously when we are thinking about a purchase in particular, it should be something that has longevity to it. You know, obviously you know, the cheapest option could be something that falls apart three days down the track and doesn't do the task that you're asking it to do anyway. So just to be really clear, when you're looking at that particular rule, no one is saying, you know, you have to have, that disabled people only should have the cheapest option.
What we are saying is cost effective. So something that through the purchase of it and it's um, the way, you know, it's pricing and it's longevity of the purchase, is something that is worthwhile for you to have.
Thanks for that Vic. Mark and Denise ask, what funding stream can be used to enable a young person to be involved in community and family outings?
Well I use, I'm sorry personal experience here, but my son has Individualised Funding under personal care and one of the goals that we have for him is being able to participate as part of the community independently from the whānau. You know, it's very, he's 13, he's a teenager.
He doesn't want to hang out with mum all the time. So we use our personal care funding to actually hire, well he has a wonderful buddy, we don’t call them support workers in our house, she's a wonderful buddy that takes him out and helps him experience life.
And it's, you know, it's a fantastic use of our funding.
So in this whānau’s context, then how would they investigate more about what's going to work right for them?
Well, I think, you know, obviously it would, you know, it takes a bit of thinking about your individual situation and your individual disabled person and what they would like to be doing with their time, you know, being out in the community.
If we're thinking about, you know, if I think about my son, I think about the activities that he's particularly interested in doing, but also with that ultimate goal, as I mentioned before, being out and about in the community, enjoying the community. I don't think, we don't, you know, when you’re putting in your funding application, well when you’re talking about, I’d like my son to have, you know, six months worth of events, movie theatre tickets because he loves the movies and as being part of the community, you know, you go through it, step through the roles once again, and that helps you frame up in your mind, gives you heaps of ideas as well about how you can use your funding when you're really thinking about those goals and if, you know, being in the community.
So I think that you can most definitely use yours, as a really great use of the individuals funding. We use ours, particularly for the paying of the care worker, the support worker. But you know, other people have used it for swimming passes for the swimming pool, things like that have come up as well.
As long as it meets their ultimate goals for their individual disabled person.
Right thank you. So Rosemarie says, regarding Purchasing Guidelines under Carer Support. I asked the Ministry of Health and was told in 2020 that it didn't apply to those like us funded under a DHB as compared to those funded under a NASC like AccessAbility for example. Is this correct? And if not, how do you get past such blockages?
It's a good question, Amanda, is that one for you DHB versus other funding for Carer Support?
Yes so I'll answer that thank you. So at the moment we're talking about Purchasing Guidelines as they apply to Whaikaha as a funding stream and I can't speak for Te Whatu Ora, but we know that we continue to have conversations and Laurie you are part of those conversations and we know how important it is for people who have funding through Te Whatu Ora to have the flexibility that's been available through the Purchasing Guidelines.
I'll just comment on that. In an advocate sense, we are really disappointed with how slow that's moving with Te Whatu Ora. We're only a little country. We know that the uptake of Carer support since flexibility was introduced through Whaikaha means that a huge amount of what's allocated now does actually get used, which wasn't the case five or six years ago.
In the world of Te Whatu Ora, there are a lot of rules and it means only a small amount of the 100% of Carer Support that's allocated actually gets used, and that's not okay. It means a lot of family/whānau carers are not getting respite and breaks, so we're trying to lobby for improvements there. It's not something Whaikaha can drive, but we are trying to push for that.
It's not fair.
Kia ora Laurie. Now we only have time to answer a couple more questions, but like I said before, we will be taking the questions down that have come in and answers will be provided to those. I want to go just before the ones that I have from the chat. I just want to go to Peter because I know he's had his hand up for a while to ask a question verbally. Peter Joseph.
Yeah hello, can you hear me? Yes. Yeah thank you. Yeah just following on the theme from the chat as well and a lot of, you know, the general theme of my own question. I fully understand the intent of the guidelines. I get that, as written, they make perfect sense to me. They make perfect sense to my wife, and we can justify realistically anything that we need for our child.
However, once you hit the host, frankly, I would go as far as saying it feels like some of- they say it's the guidelines and they'll say things like, one Ipad every three years or they'll say, just it can be a new thing. Any given thing, and I’ll say well, where is that written please? And they say oh well you know it's not. That's where the wheels come off, you know because like you touched on what's the support for one person might not be justified for another person.
It's situationally dependent which is why you can't have a list of rules. What can you do to frankly prevent this gatekeeping that for whatever reason, the funding, the hosts, some feel they need to do? And you know, that's the heart of the problem for us, not the guidelines. You know, it exists to make our child's life better, not to put people in tears while they're pulling their hair out, trying to twist themselves in circles because someone is saying something they made up effectively from our point of view, what's you know, what’s the solution there?
Amanda is that to you or somebody else in your team?
Vic do you want to talk again about the individual service plan and purpose of the funding?
Yeah, sure. So I’d probably answer it in two steps. One, so the individual service plan that you do. Well, I kind of feel like also there’s multiple questions in there, you know, but the individual service plan that you write, you know, you talked at the beginning of your relationship with the host agency is something that you both should understand and agree on, is not to say that it's set in stone either.
So once you've done your individual service plan, you know, we know, I know I've been with mine for a couple of years now. Luka is changing. We need to make some changes to the original plan, and that’s something you're well within your, you know, you're powerless to do with your host as your child evolves.
When it comes to things like having a challenging situation with a host, what you can do, one avenue, obviously we say, look, you know as much as you can humanly possible with the level of energy you probably have, because if you're like me, you're exhausted, try and resolve it within your host relationship.
If you can't, you can actually escalate a complaint about any service provider, it doesn't have to be a host. It can be any service provider that you have through the Whaikaha complaints process, which is documented on our website and through the complaints process we take every single complaint seriously and we'll be following that up, which is a- which would be our communication with you as well as with the host agency, if that's the person that the complaint’s about.
So I would encourage anybody who's having ongoing aggressive challenges with their provider that that can't be resolved within your relationship, that you do let us know through a formal complaints process.
And you know, the other part you were saying about the, where are the rules written about the ‘only can have one Ipad every 12 months’, or one piece of technical. That wasn't part of the guidelines specifically because I believe that would be at, my understanding, at the host level. Was that right Amanda?
Sorry say that again.
I mean I know this has come up in the um, some of the chats and it's come up on some of the forums and Facebook as well, that people are coming up against only being able to buy a certain thing every 12 months or 18 months.
No. No there are no rules like that. And I did see in one of the- I was just looking at the comments, so there are rules and that's the four purchase rules and then there's the guidelines and it's the guidelines that we've updated to try and provide examples and more clarity.
Thank you for that. I'm aware of the time and I know that there's many questions that haven't been answered, but the chat will be open for a little bit longer after we are offline.
So keep putting your questions in and Whaikaha will address those. So I'd just like to thank the panel. I see some comments around some people who would like a little more clarity, and not to dismiss those, but perhaps that clarity will be best come in written form when those further questions are answered. But Amanda, I'd just like to ask you or anybody else in the team, whether you have any closing comments before I finish us off with a karakia.
I’ll just jump in and say what we have done with other huis is we've made sure that we've followed up on our website with questions and answers that were unable to be answered on the evening.
So myself and the team will be working very hard after this to document as many of your questions into as many of the answers as possible, and we'll make them live on the Whaikaha website.
Thank you. Any last comments Amanda?
Oh just, we hope that this has been helpful and if people would like us to continue to have sessions, online sessions then please let us know.
With that I’d like to close us on a Karakia. Te whakaeatanga e. Te whakaeatanga e. Tēnei te Kaupapa ka ea. Tēnei te wānanga ka ea. Te mauri o te Kaupapa ka whakamoea. Te mauri o te wānanga ka whakamoea. Koa ki runga, koa ki raro. Haumi e, hui e, tāiki e. Thank you everybody for attending.