This is the unedited transcript of Episode 24.
So first and foremost, I would like to thank you for giving me this opportunity for us to have this conversation around autism and around disability in general as well. And also I would like to congratulate your office and your team for the new ministry. Thank you for giving or maybe somehow listening to my concerns as well, perhaps along the discussion. It’s been first two weeks as far as the ministry has been established. How was your first two weeks? Well, firstly, thank you very much, Luis, for the opportunity to just have a korero at all with you. It’s been amazing to think that we have the Ministry
for Disabled People that’s been launched a couple of weeks ago. The main thing for the first initial kind of few weeks was to make sure that the things that transferred over to the ministry, particularly from health or disability support services, embedded. Okay, people are getting their support and that nothing has changed in that space and people are feeling okay about that. Really important that people get the support that they need and the care that they need. And the other thing was really embedding enabling good lives, the pilots into the new ministry and the Office of Disability issues. So the first kind of little while is implementation and establishment. And it’s really just about bringing those
three processes together under the one roof and ensuring that they are working well, doing what they need to do, and that we will develop a plan of work and be much more concrete about how we continue going forward. So initially just kind of bedding everything in. So it’s been working really well so far. Okay, so what’s your motivation? I know coming into office, there’s a huge list of concerns, perhaps some challenges that other parents with disability or parents who are directly connected with a person with disability. What’s motivating you to go to the office? To your office? Yeah.
Well, firstly the opportunity to change the landscape, firstly of how government interacts with the community, but mostly how the rest of Alter or New Zealand are able to interact with the community. So what I mean by that is that we’ve got a real opportunity here to improve the outcomes for our disabled people wherever they interact with whatever services are out there, or really their expectations of how they live their lives. So later this month, we will be putting in place the accessibility legislation. We’ll be reading it that for the first time that’s really significant for us as a country. It’s a piece of work that we have worked on for the last five years.
And it came about because the Access Alliance, which is a group of disabled people, their carers, their parents and services, understood that in order for disabled people to have access to things like decent housing, income, education, transport and the like, they needed this legislation in place to make sure that everybody across the whole system is aware of their responsibilities. So that’s hugely exciting. But what is also really exciting is that this is the first ministry of its kind dedicated just to our people with disabilities anywhere in jurisdictions that we compare ourselves to. So that’s a huge opportunity for us.
We want to make sure we get this right. What motivates me is that I was at the beginning of the process working alongside the Excess Alliance as one of the MPs that supported the development of that. When we came to, government Minister Seppaloni, of course, had the role as part of her role and I worked with her around ensuring that the voice of the alliance was part of the discussion. And she picked up that work and has worked with disabled communities and with people with disabilities and with their parents and the leaders in the community to make sure that this piece of work has gone ahead.
And what I thought was going to be accessibility legislation has actually resulted in the ministry. And that’s hugely motivating for me. If I’m going to be drilling down to the specifics of autism, is it part of the disabled community? I’m a little bit confused before when we are trying to access support from different organizations. Is it part of the disability or is it a different thing? What is it? Well, it’s a really interesting question in that there will be aspects of support and care for people with autism that span a whole lot of government agencies. What the ministry’s role will be and what my role will be.
And what the new chief executive’s role will be, will be to ensure that wherever somebody interacts across government agencies, the expectation is that they get served appropriately and that we encourage the development of the staff within those agencies to understand and work appropriately with disabled people and the wider fan of. So whatever supports are needed for anyone who has autism that they will in time be able to access them, they will be able to also it’s our dream that they will be able to drive what is needed for them. For example, in education, there’s a huge opportunity for parents for young people with autism to actually drive what services they need. I know that one of the issues that has really exercised parents with autistic
children is the access to appropriate assessment and getting those assessments and diagnosis completed early so that you can get the support and services in place in time for your children. So that whatever developmental needs required are put in place as soon as possible because that has a huge impact on your children going forward. So the ministry’s role will be to support the Ministry of Education around ensuring that there is people trained, they understand the needs and there is somebody there that will be advocating for and promoting and pushing those services to be available to children at an early age, earlier than currently. And often parents are confused about where to go and what support.
So that is a big feature of what the ministry will do. It is about supporting not only government but other agencies to deliver the best services they can. So are we creating or making some legislation out of it? Or is it more of like, if there’s a problem that I will be experiencing in the future, I should be going to your office so that it can be looked at, there’s an end. And an end here. So, yes, legislation we are creating, yes, we are reforming the house system so access for services should be easier to obtain.
That’s the whole goal of why the reforms are in place. And yes, the Ministry of Education has always had at the heart of it that it is whatever child comes through the door, their needs should be met and we just really need to support them to do that a little bit better. I think we can all agree that there are opportunities for us to do that, but now is the time really to talk with the communities about what needs need to be met, what their expectations are, and for us to support that to happen. If you can appreciate, we are in an implementation stage and we are working alongside other ministries to make sure that they deliver what is required of them now, but what is going to be required of them into the future.
And that future part is the exciting part because we fully expect to work with parents. We fully expect to work with disabled people themselves. We fully expect to work with support people as well. But mostly for disabled people to tell us what needs they need to be met and how we should be delivering them and when we design new services. Having them at the absolute heart of that. They talk about the phrase nothing about us without us. But what we want to do is make sure that in practical terms that happens, that they lead those discussions and they are able to feel a real sense of confidence that they are going to be
able to live their lives as fully as possible according to their needs. And they are driving that, not the ministry and not anyone else that they drive those decisions. And one of the challenges that I’m aware of in terms of being able to support them as early as possible, because we know that if we have an early intervention that these kids can thrive, is the long waiting list for example, working with the Minister of Health. And then there’s this challenge of maybe one or two year waiting before a chat can be assessed or diagnosed, and before that or after that, that’s the only time that they can provide support for that chat. What are the plans?
Are we looking at proposing something with the windscreen of health in terms of working with them? So what the health reforms have given us the opportunity to do is really look at those areas where the delivery isn’t quite so good and needs improvement. And I think we’ve been very upfront with saying we can do better and we will do better. One of the things the minister has done has provided an extra five and a half thousand spaces within the health environment to deliver services. Part of what we need to do in conjunction with our disabled people is identify those areas of most need and be advocating to help to support that. We have. As a government had good track records. For example. In the mental health area. And now as an opportunity for us to say to House.
We know that clinical psychologists. For example. Which may be very useful in this space or other people. That there are needs for us to have more people trained and have them able to access the waiting list. Because that’s what we are developing. It has always been a point of tension being able to get access to the appropriate assessments early enough. So if we can be working with our disabled communities, with our disabled people, their parents, for example, have been saying, when we design services, this is what we need. And as a feature of that,
it means that we will need more people trained in this area to meet those needs. That’s our expectation of the health system that is far more responsive to our community’s needs. And that’s one of the things that we will be ensuring, that when I talk to the minister that I will be presenting to him the concerns of the community and where the most need and pressure is, like anything, these things, we will make them part of a wider work program. But to be able to discuss these with other ministers and say, hey, these are the areas that we know we need to make some improvements in. I know you agree with us. Let’s work together and make sure that these things happened as a matter
of comfort, I guess, for people who are listening or watching this. We recently had a discussion with the independent Monitoring Mechanism, who is our independent group who are looking at our obligations under the UN Charter, the UN Convention for the Rights of People with Disabilities. And we were able to secure several ministers to come to that particular discussion. And they all made commitments to ensure that they look at their processes, they look at their current policies and they look at their settings and how they can make improvements within their own ministries to ensure that the needs of disabled people are met. That will mean, yes, the concerns of the parents of autistic children are expressed and concerned. And I would certainly welcome
the opportunity for groups that have specific needs to be able to voice them as well and feel a sense of we will be able to change things because we know that our voice is being heard. Not just speaking to me, but speaking to not just speaking to government, but speaking to providers. Not just speaking to providers, but speaking to the general community too. This is a journey we all need to take together and it is a great chance for us to really elevate these issues and concerns. Thanks for that. And I know the journey is different with different families and fan outs and also speaking with experience in terms of education and education side. You did mention about that earlier. It’s so challenging and a little bit frustrating in terms of getting the right
support for them or for the autistic kids especially. Like for example, ongoing resourcing scheme. This is a problem where, as far as I’m aware, it’s only a 1% approval rate. And for the reason that it is being kept and the reason or something that I couldn’t understand is why autistic kids, those who have high needs or need to compete on that funding, where they need that funding, and then we’re trying to look at these kids to thrive in the environment that they need to thrive on. And why are we still cutting that, given that there’s a need and we all know that ours is working very well for kids who have the right aid. Yeah, definitely. I couldn’t agree with you more. I know that there is a real pressure. Point for many of our families wanting to have their children at school and be
able to access the support that they need to learn and thrive well. This is a key part of our program policy and our philosophy as a government that whomever comes through the door at any school or at any environment actually has the opportunity to thrive and do well as well as they can. The Oasis funding mechanism is problematic in that there is a limit and once you have reached that limit, it’s very difficult to get funding going forward. I know there is lots of work taking place to address that specific issue because it’s a thing that comes up quite often and also the idea of how you would set criteria for that funding to be accessed. I think that as part of not only our reviews in the House system. But this is actually an issue around education that they are looking at how we
do this differently and it may be that we change the mechanism. But it’s a conversation we need to have with the wider community about not only what do they see as frustrating and not working well. But what would good look like? What does good look like? We have to have that conversation. This is an opportunity for us to do that and to be supporting disabled people. To voice those concerns directly because we know that access to education is really important in terms of them being able to get good jobs and have good pay and your future life outcomes are very dependent on the support that you get to do education well or all those other things that you need to do well. Yeah, I’m pretty much aware about our long term plan in terms of having disabled people on the leadership roles. I’ve heard about that long term plan and if we are not going to address the foundational needs then there will be challenges in terms of us meeting that goal. Right? Absolutely.
So one of the first things that we’re doing is we’re wanting to, as I say, embed all the practices in the ministry that seems to be working well. We are looking at system transformation and that is part of our Enabling Good Lives program to establish that across the country. That is a feature of that will be something that will touch many people’s lives and it’s a feature of what we are doing in this implementation phase. What do we need to do? How do we set that up? What is the phasing that we need to put that in place? There is also around the Disability Support service some changes that are likely to be made there. But again, we’ve got to develop a bit of a work plan and that is probably after the initial embedding of the ministry is the next piece of work of what is going to be the plan going forward?
What are the things that we need to do and who will be sitting alongside the Ministry doing that work. So establishing the governance group will be really important. It’s important that as many views are represented in that governance group as possible and that they feel their role as such, that they are providing some really clear advocacy about what is needed. So it would be a great way to channel all of that into the Ministry so that when decisions are made, they are the decisions that actually meet the needs of our community. In terms of having the health New Zealand and Maori health split from the DHBs. Now they are two entities plus the Ministry of Disability. So we’re looking at working across both areas as well, is that correct?
Yeah, and I think that’s entirely appropriate. I mean, there is no doubt that our house system needs to change to meet needs and it hasn’t really been that successful. And there’s no doubt that our Maori House Authority will have some real impact on delivering good outcomes for Maori and for Pacific too. And it’s important that needs are met in a way that’s appropriate for them. So really looking forward to the Mardi House Authority, for example, making some decisions that are significant and important to them to ensure that their outcomes are as they should be. There’s equity in the system. Right? So equity is a big issue, I guess one of the core values that underpins a lot of this transformation work.
And we do it because we know there are people who are missing out. Yes. And in terms of about working, how about working with other not for profit agencies as well? Are we going to be continually working with them in terms of like, for example, I’ve learned about the transition activities or transition programs of the autism which they are only doing at certain locations, like they’re only doing it in Wellington and Oakland. Are we going to expand that in terms of transition to work for artistic people? Yes, in the sense that the role of the Ministry will be to encourage support, not necessarily do themselves, but encourage and support those programs. For example, if they are programs that come out
of the Ministry of Social Development, we want to make sure that the engagements with the Ministry, that the Ministry staff are well supported, well trained and continue to advocate. But more than that, their programs are in place for disabled people and it doesn’t matter who comes through the door that the service is equitable. However, in saying that one of the reasons we introducing accessibility legislation is that we know that some people need more support than others to be able to ensure work programs, access to employment. What are the barriers for that? That might be education, so that education is barrier free for disabled people.
All of these things are really important to us and we’ve put a line in the sand and said it is so important we are introducing legislation which will demonstrate our commitment to supporting other government agencies, NGOs and the like, to deliver services that are the most appropriate to disabled people. For us in New Zealand, it’s groundbreaking stuff to be saying. Regardless of who you are, you have the right to decent education, you have the right to decent income, you have the right to be able to enter parliament, you have the right to decent housing. And that’s our commitment to disabled people. That whomever you are, you will have these rights and we will support you to access them.
It’ll take us a little while to get through that, but what we’re saying here’s the line on the sand. At past this point, we will be working with disabled people to make sure that you’ll need them and met as best as possible. And as a government, we are committed to this. So how long are we looking at? I know it’s going to take a while, but are we looking at a specific timeline to have this legislation done? Yes. So the legislation will be about a year from start to finish, but then there’s some implementation time after that. Where overseas jurisdictions have had this in place, some things have happened more quickly than others. It’s given the opportunity for some
people, say, for example, work programs and opportunities for employment might have been easier to get off the blocks quite quickly, work with employers about how they work with disabled people. That has been something that’s been a bit of a feature for a while. So that might be an easy thing to an easy aspect to deal with. Perhaps it might take us a little bit longer to deal with some of the more entrenched issues and that might be around communication, that might be around things like access to justice or transport, all that kind of stuff. But it’s our commitment that we make and part of this is really also supporting the public of New Zealand and the people of Altered to get on board with this as well.
So what’s our initial plan of attack? I mean, we have this plan, long term plans like for setting up the initial steps have we taken? I’m just curious about the initial steps that we have taken in order for us to start the journey for this. Well, this is where I have to put a big thank you to Minister Seppaloni because she has done a lot of that work which is leading us to the first reading of the legislation. But she’s done a lot of work in the last five years. There’s a full disability issues to ensure that enabling good lives, for example, as a program has rolled out to three sites. Now, what our plan is to implement that across the country. We have to make sure we can do that in a way that’s safe and stable so that people will continue to have good services.
But we also have to do that in a way that people have choice about what services are and what delivery looks like for them. We’re not going to put a time frame on that, but we are planning to phase out some things initially and look at how we might roll that out across the country, looking at system transformation as well and how we transform our disability support service. That again is we will work out a bit of a plan and then phase the work that we do there. Then the legislation. As I say. That will be passed in about a year’s time and then we’ll start to look at implementing those things we can do
quickly and then phase out the things that might take a little bit more time and bring on those other agencies as well to support that. In terms of the MSD, you’re no longer part of the MSD, right? It’s totally separate. Absolutely. We are the first ministry of disabled people in comparable jurisdictions, just around disabled people and that’s a huge opportunity for us and there will be people across the world who will be looking to see how it goes. So organizing, getting on board our governance group and our governance arrangements is really important and it’s key for us to ensure that disabled people have a very strong, powerful voice in this. And I know that I have asked you too many questions about what your office will be
doing across different disability communities. So now the question would be what do you think parents like me can do to help your office, to help your team so that we can all succeed in your goals? Yeah, I love that question. None of us do this on our own and you as parents need to feel that not only your voice is heard, but that you are contributing to developing and doing some fantastic work. One of the things we will be doing fairly early on when our new permanent CEO comes on board, as we want to do a bit of a roadshow, go out to the communities and say we are here, we want you to come on board, we want you to support, but we want us to do this together.
So that’s my message is that we don’t do this on our own, we will do this together and we want you to feel like you have an opportunity to really shape and change how disabled community feel about the opportunities they have for themselves and their lives and their future. So any other final message that you want to share with parents carers or the wider disability community and the people of Alterawa? I think ultimately what I would like is that the person that’s sitting in this seat has come from the community and has the lived experience and is able to really advocate for themselves. And I think my job going forward is to help create an environment where anything is possible and that disabled people feel they have the voice and they have the control and they have the opportunity.
That’s I think the most important thing that any of us can do, we want to create the space where that’s possible. Right. But I’m hugely grateful to be given this opportunity, but I’d really like to pass this on to someone from the community. So, first things first, let’s try and get some more disabled people into Parliament. It would be good. It’s going to be an amazing outcome if that happens at some point. So one last question would be what’s autism in the eyes of Autumn? It’s a really interesting question. I mean, as a parent or as a person
with autism, I guess you’ve got two different perspectives, right, good point. Somebody from the outside, I guess it’s really just providing the space where that person feels acknowledged and honored and valued and that they are part of the. Wider hold, because that’s it for me. Thank you for your time. I really appreciate your time for giving us the time here and having this conversation. Thank you.