Forum 2019 – Person-directed support

This workshop considered the opportunities for person-directed support, associated challenges and ways to overcome them. There was an emphasis on disability and mental health users’ access to the health and disability system.

Keynote speakers

Hon Jenny Salesa, Associate Minister of Health

Video: Hon Jenny Salesa - Forum 2019 - Person-directed support

[Hon Jenny Salesa presenting to an audience as part of the Person-directed support session of Forum 2019]/p>

I'd like to thank all of you for being here-- leaders from across the health sector, the health and disability system for being here this morning. And thank you for that introduction. And thank you also for your words. I look forward actually to hearing the words of our expert panel because you are the ones with lived experience in this space.

You all, as health leaders, have an important role to play in helping us shape the way that we design and deliver our health and disability services both now and in the future. And I thank each and every one of you for your time.

I notice that there are many of you around here who have much more experience than me. I noticed that a former cabinet minister is here, the Honorable Vui Mark Gosche, who also has a lot of experience looking after a loved one.

I was recently, as the introduction said, blessed-- and I say it's a blessing-- with the disability support services portfolio as associate minister of health when cabinet was reshuffled. Over the past few months, I have met with people with disabilities, families, carers, and providers from across Aotearoa, talking about how we can transform the disability system so that people can get the best outcomes so that they can lead the best lives that they choose.

This has also been an opportunity for me to visit Canterbury and Waikato, who are championing the person-directed support services through Enabling Good Lives. I've also had the opportunity to learn more about Mana Whaikaha, the prototype to transform the disability support services in MidCentral, which is also underpinned by the Enabling Good Lives approach.

And I'd like to talk and share some of what I heard from our folks with lived experience. For those of you who are not familiar with Enabling Good Lives, it is a partnership between the disability sector and the government to transform our disability support system. Enabling Good Lives is a very innovative approach, world-leading governance model where ministries and disabled people equally share risks and make decisions together.

And I was struck by your introduction when you said that there are some who are not very good at listening. I can say that I would hope to be one of those ministers that is much better at listening.

The idea is that we, government, and disabled people are all in the same waka-- that we're paddling in the same direction. This is especially important for disabled people, as they're the people most affected by the decisions affecting their lives. So it is only right that they're steering the waka together with us.

This collaborative approach was recognized as a significant shift for government services at the 2019 Spirit of Services Award with Enabling Good Lives winning the Leadership and Governance Award. The vision of this approach is that people and their families will have greater choice and control over their lives and supports and make more use of natural and universally-available support services.

Now, guiding this approach is a set of principles that were developed together with the disability community families in whanau. And they are self-determination, beginning early, person-centered, ordinary life outcomes, mainstream first, mana enhancing, easy to use, and relationship building.

The vision for Enabling Good Lives recognizes that disabled people should have equal opportunities to lifestyles that the majority of New Zealanders enjoy. Now, outcomes that people seek are different for each person. However, they are focused on enhancing their well-being, their whanau's well-being, and contributing to our communities, and building a better and more independent future.

I've been deeply moved by the people I've met when I went around talking and them sharing their stories with me about EGL. I met one woman, for instance, in Waikato with a physical disability whose life opened up when she had the opportunity to work with her connector who got to know her story.

By working with her connector, she was able to get the supports that suited her needs where she wanted to go in life. This lady now feels in control of her life. She is no longer depressed, and she works full time, and she has just bought her first house with her partner.

I've also met families whose relationships and dynamics were at breaking point, only to be transformed when they were given the opportunity to manage and to choose their own supports, such as managing a personalized budget and choosing how to spend and to get the best outcomes for them and their family.

One father talked to me about the ability to use their funding to purchase items and to do activities so that everyone in the family can join in. This particular family was a Pacific family. And they used some of the funding to purchase to enable them to go and swim together as family. Now, this is an activity that their son enjoys, but their son with disabilities have two siblings. And being able to take the whole family out for the whole family to enjoy an activity as simple as swimming was something that the family really were grateful for.

I'd also like to acknowledge the hard work of everyone who's been part of driving and championing Enabling Good Lives. As an advocate for systems change, I strongly believe that this is an example of how we can codesign and have and ensure people-directed government services in the future.

Now, this is not news to all of you, but as many of you know, the report that Heather Simpson is currently finalizing at the moment to come back to cabinet with what her recommendations would be, I encourage you to have some say and to be active in that. This is one of the best chances that we have in disability support services to ensure that our voices are heard and that they are addressed in the future.

My vision is that we have a health and disability system where people are able to access the supports and services that they need instead of being told what they can or cannot access. My challenge to you is how can you work together with all the other sectors across agencies, businesses, communities, and with people to ensure that our families with disabilities are able to access services that we give them the ability and the power to direct the support that they need to lead their best lives.

In closing, I want to thank each and every one of you for participating in this forum. And I'm really interested to seeing how we can all work together to ensure person-directed support in your organizations to ensure that we build a stronger, much healthier health and disability support system in the future.

[APPLAUSE]

Thank you.

Philip Patston, Managing Director of Diversity New Zealand

Video: Philip Patston - Forum 2019 - Person-directed support

[Philip Patston presenting to an audience as part of the Person-directed support session of Forum 2019]/p>

Kia ora koutou. Nga mihi nui.

It's good to be up here again for the third time in one and half days. But I'm feeling a bit bored. And so I am abandoning my PowerPoint. I'm going to lose, and try and keep to five minutes. And Tristan, you might want to throw something in there.

Yeah, sure.

It's like that. I've been noticing over the last day that we preach a lot about managed services, and Pacific-led services, even Rainbow-led services. And even though we are talking about person-directed support, I think what is not being said is that the leadership challenge for the future of this is that the actual system that provides that support is lead by people who use that support.

I think there is a danger that we're going to go down the enabling good lives pathway, but still end up with a system that is run by people that don't know what there is to have lived the experience of access needs. And even if they do, they may not actually need the support that they are providing.

And it's very different to have an active need and run an organization where you're able to do that without support, compared to having to use support as well as provide that support. I've done that myself for over 30 years. I used to be an entertainer. I performed internationally. And I used to have to get up at 3:00 AM to catch ridiculously early international flights. Support agencies couldn't find people that wanted to get up at 2:00 AM to arrive at my place at 3:00 AM so I could get the airport at 5:00 AM.

So I went in there, and said, you can't meet my needs. And they said, thank God. We can't. We're really glad you agree with that. And so I have had individualized funding since before individualized funding was a thing. And I have managed that support.

So I want us to be really clear that this is not just about disabled people leading their own support. This is about a fundamental change in the power held by people in the system. And it is going to require disabled people to step up and to take those leadership positions. And it's going to take non-disabled people to have the humility to step down.

And when I say humility, I don't mean shame and guilt. I don't want you to be reading Brené Brown books for the rest of July. And I don't want you to feel defensive. Because we're all part of this dystopian Orwellian groupthink. And it's nobody's fault. It's just how it's evolved. And we have a choice to devolve and re-evolve, but in a different way.

Just really quickly, I'd like to just make note of a few things. I want to talk about needs assessment. I don't need needs assessment. I'm 52 years old. I know what I need. The system needs needs assessment. It's not a service. It's imposed on people. Let's get rid of that, and use the millions of dollars a year that NASC costs to actually provide something useful. And yes, that might be a service that helps people who need help finding out what they need. But let's stop this yearly involuntary process from happening.

There's an old Australian guy who says that disabled people are the victim of the subtle bigotry of low expectations. The subtle bigotry of low expectations. It's very hard to fight that. Because from that comes words like "care," "looking after," "helping." I often say, often, helping is not helpful. Can you be useful, please?

Finally, we need to look at what is the leadership that we need into the future to make this change. Mark Wheatley talks about the notion of generosity in leadership. And when we think about what we've got now, we live pretty much in a world of scarcity. There's never enough. How do we move into generosity and a culture of abundance? How do we invite people to the table, and whose table is it, and who is doing the inviting? And if you're not invited, how do you respond to that? If you used to invite 10 people, and other people don't invite you, what does that mean?

Finding Peter Block says the answer to how is yes, that the question how will reveals our doubt about what matters. And what we need to be thinking about is what matters, and saying yes to making that happen.

Finally, just a few values from Peter Block around leadership. Love-- how much do we talk about love-- collaboration, faith in the supreme being which goes beyond religion and views, creativity, integrity, commitment, holding one's self committed, not holding somebody else committed and accountable, but holding that commitment and accountability for what we do. Thank you, kia ora.

[APPLAUSE]

Presenters

Dr Tristram Ingham, Vice Chair of the Muscular Dystrophy Association of New Zealand and Te Ao Mārama

Video: Dr Tristram Ingham - Forum 2019 - Person-directed support

[Dr Tristram Ingham presents to an audience as part of the Person-directed support session of Forum 2019]

[Dr Tristram Ingham's mihi]

Thank you, Minister, for your opening words and to Mark for your introduction and to the Ministry of Health with the invitation to speak here today. We've heard a lot over the last day and a half about how the health and disability system is inequitable and unsustainable, that it's a system under strain and a system that needs to change. And we hear the people in this room over these two days actually really effectively represent the majority of that system. And so this is really an opportunity for us to reshape that system and for person directed care or person directed support to be a key vehicle to drive that change.

I say ready or not, here it comes, because disabled people are finding our voices, and the level of advocacy impression in the community is rising, and the ministry central government is picking up on this, and legislative policy, regulatory changes are coming that will support this movement. So it's a time for organizations to get on board the walker, as the minister said, and really lead that change in parallel with us.

We've all seen this diagram before. People watching a game, looking over a fence. And the point of the diagram makes the point that we need to distribute resources and supports to allow each person to fulfill their true potential. Equity over equality. But it can be easy to overlook a key aspect of this graphic. Who built the stadium? Who would build a stadium that only 1/3 of the people can see the game?

And so really I think this is where it calls into question person directed support. It's really a vehicle for not only a human rights approach but actually just simply a quality framework. If we design the fence in partnership with the communities that we're serving, we can design a fence that doesn't require those supports, because those boxes-- we've built a whole industry around building boxes, moving them to the right place, lifting people on and off those boxes. And inevitably, the boxes aren't in the right place at the right time, we don't have enough boxes, and no one's really happy.

If we had started from a premise of the people who use the system, we're integrally involved in the designing of that system. We would design a system that not only met their needs better in the first place but would save us a lot of work. And I think that's a really critical image. When we're talking about these fences, we're talking about quality. We're talking about processes. We're talking about the complexity that the system has. We've heard over the last two days, the system is very complex. That complexity is the fence. It's that complexity we have to remove.

And I guess my question is, what actually drives quality and innovation in a system like ours? Take the metaphor of this communist architecture. In any monopoly or where a consumer or market economy doesn't drive that competitive change, a system inherently tends to become functional rather than inspired. So how do we get to a point where we subject our Uber drivers to more quality control and customer feedback than our health and disability service providers?

How does that happen, and how do we bust out of that? Because I'm going to challenge us with the notion that the system is performing exactly as it was designed. But it's because it's a system that was created and evolved by providers primarily to support the focus of their needs and their efficiencies. So why would we expect a different outcome? And so this is where I think person directed support is not only just a means but an opportunity to change our organization.

We need to identify levers. And finding levers in the system is a critical step and one that's been quite lacking at all levels. But with problems like this, there won't be a single solution. They require a concerted effort. We have to not only make the problem understood, and this forum, I think, represents the ministry during its part to try and engage with the sector in general to actually make some problem more understood and not bring a solution but to start the conversation and actually ask the sector for those solutions. So we're asking you to identify in your organization what are those levers? What can you do to break down those barriers?

I want to give you an example, an opportunity, in fact, around the implementation of this practice. And this is something I've been involved in through the DPO Coalition, the Disabled Persons Organization Coalition. So this is an example of government working with disabled people in a partnership relationship to implement the UN CRPD. So the UN Convention on the Rights of Persons with Disabilities. This convention is in effect in New Zealand. It is legally binding an international law on all state parties. So government. And all government funded organizations.

And its purpose is to ensure the full and equal enjoyment of human rights and fundamental freedoms by all persons with a disability. And in health, so specifically relevant to this sector, there is a whole article on the rights of disabled people. And that includes to the highest attainable standard of health with not only mainstream health services, but also disability specific health services and habilitation and rehabilitation programs. Programs that are close to home and that respect the inherent dignity of the individual.

There are a number of other articles in the convention that are also specifically relevant to our sector. That our services must be accessible, that our staff must be trained in how to work with people with disability, that our materials, our information forms, et cetera, need to be accessible and forms, and that other technologies that are available to support those interactions. Legislatively, regulatory, this is already in place. There is nothing that stops each one of our organizations from taking this forward tomorrow.

Article 4.3 of that same convention talks about the requirement and gives us a clue to the person-directed support element of this, that in the development and implementation of not only legislation and policies but in other decision making processes concerning issues relating to persons with a disability that the represented organizations or disabled people themselves must be closely consulted with and actively involved. So what does closely consult and actively involved mean for you, for your organization?

So I want to just leave you with a glimpse at what a checklist might be, because I'm sure if I ask, most of you would say you're committed to working in a genuine partnership with consumers, disabled people, tangata whaka. So what does that mean? What in your organization's governance structure do you have to actually support that top down leadership?

24% of the population have a disability. How is your workforce in terms of its disability makeup? After all, if we can't make health and disability services such that they can meet the reasonable accommodations of disabled people, how do we expect any other employer to do so?

In the commissioning of your services, how many of your services are actually co-designed, co-delivered, and co-evaluated with service users or disabled people? And just like the Uber driver, what do you have in the way of robust quality feedback mechanisms so that those consumers, those disabled people, can actually give you their feedback?

We know that organizations need help to be able to move forward to this kind of way of thinking, and so we're really encouraging significant community stakeholder partnerships. How many of your organizations have relationships with disabled persons organizations or Kaupap Māori providers or other NGOs to kind of fill the expertise gaps that you're having?

And just really finally, I think there's a number of key success attitudes that you've heard about from the previous speakers that are really going to underpin this. We need to recognize that consultation is no longer adequate. That we really need each organization to truly know its community and go beyond the usual suspects that you might have brought in on the promise of a petrol voucher or a morning tea for a consumer support group.

We really need to recognize and remunerate the lived experience skill set of the communities that we're talking about and really be open not only to the input and critique that may come, but actually to recognize that we don't, as providers, need to have all the solutions ourselves. We need to bring the problem to the table and come to the table as equals so that we can work on the solution together.

Kia ora koutou.

[APPLAUSE]

Marc Beecroft, Consumer advisory representative, Alcohol and Other Drugs

Video: Marc Beecroft - Forum 2019 - Person-directed support

[Marc Beecroft presents to an audience as part of the Person-directed support session of Forum 2019]

Kia ora kotou te whanau. Nice to be here. And nice meeting the panel members. I think I might just slip through to the last slide just for a laugh here. I usually do things backwards. So we'll see how we get on.

I thought I'd tell you a success story actually. So a lot of the work that I do outside my peer support workers help develop and support support groups. I like the word collaboration. I try to pull as many providers together as possible to contribute. You can see on this diagram, there's quite a few people actively involved in one of these groups that I do.

So the story that I'd like to tell you is, I've been doing this for about 12 years now. And this woman turns up every now and again. And she calls me baldy or roundy. She knows my name. But she doesn't use it that much. But she seems to get some kind of laugh out of calling me by these names. And it's all good. It's a kind of endearment.

And I hadn't seen her for about a year. And she said, I've just been to my doctor, or psychiatrist, or someone, and had a shot. And he suggested I go out and be more socially connected with people. So she said, I thought I'd turn up to your group.

And on this particular day every month, we have a jam session where people bring their guitars and bits and pieces. And rather than having the kind of therapy or chicken group, we just hang out and have pizza, coffees, and people can come and go as they please. And we have a jam session.

And I got out my little instruments. We play guitars. And I said, aw, you can play this if you want and join in. And she was really taken by this. And all of a sudden, she was trying to encourage other people. Come and sing. This is really cool. And she was really, really happy.

And I suppose the work that we do, these initiatives that we try, how do we know if they're successful. And for this particular case, the following month, she turned up again for the jam session. And she had her own maraca. And I thought that was really, really good.

And so that's just an idea of having an open door policy. And we don't know who's going to get what out of tuning up to a group on their own terms. But this was just a wonderful example.

So as you can see there, there's a lot of organizations involved-- kaupapa Māori services, clinical services, peer support services, educational services. And the key or the principle to making this successful is everyone just donates what they can. Someone might provide a worker for a couple of hours. Someone might fund a presenter to come along. That kind of stuff.

So once again, how do you know what you're doing is successful? Well, I got an invite to go to a place on the South Island, Kaikoura. They wanted to develop some peer support. So I said, how about trialing this model here. So I sent them some background information.

And when I tuned up there, there was quite a big group of people, people from the police, people from the provider arm, mental health and addiction, people from the working gangs.

After the earthquakes in Kaikoura, there was a lot of people working. Lots of drugs coming into town. So Skirt was the organization. They attended. We had the city council.

We would have had the Liberian, but she was at the vet getting her cat fixed. But it was a very communal type meeting. And we went through this process of talking about how it will be successful, what are some of the tasks that individuals will have to complete? And everyone got on board. And after three months, they went, yep. We're all go. We've got the dates.

And the bottom line here was there was meant to be a 0.5 FTA for our organization to coordinate facilitators prices. But she said, nah. You're doing such a great job. We don't need you. We're all committed. And we start off from such and such a date.

So if I think what's working and what's not, if someone can grab an idea that's being developed and think they can run with it, I go, someone believes in it. So it's still going, which is good. But what is missing in a lot of these initiatives is good strong leadership, coordination, and knowing the lay of the land, and being able to work when things get a bit quiet and problem solve.

Anyway, these are some good initiatives.

I suppose I'm going back about 10 years with this idea when it come up. I don't know if there's many people from the addiction and mental health sector here. Is there any voices out there?

Yep. A couple of fingers. Well, going back about 19 years ago there was a lot of strong interest in coexisting problems, CUP. So there was a big drive from the ministry that services needed to work more collaboratively in that mental health and addiction sector.

Once again, good set of principles. Here's the underpinning values. Here's some documents. Put it out to the wider community, and move forward.

But what we find is a lot of people don't read these documents. Everything sounds wonderful in principle. We talk about this as if its new, but service providers often say, we've been doing that for years.

And so when you take this argument, I'm probably new to this forum here today. But I hear we've got a new document. What is it? 300 pages.

Well, I tell you. There's going to be a lot of people that don't read that document. And I hear this word again. There's going to be a set of principles.

Now, I do like principles. I grab them. Like well this is how I'm going to use these principles. But the next tier down. How do we roll that out?

We talked earlier on. I heard the conversation. We need more leadership. We need to go back further than that. We need some infrastructure to grow people.

And the health and disability sector, the mental health, the addiction sector, the key workforce that's been used, especially in the addiction workforce, is the consumers. 30% of the workforce has come from a lived experience.

We know those that give get back. There's an energy that's positive that people can draw on. What's the hard message here in trying to grow that?

In the health and disability or health sector we hear this word restorative. Any person coming into our system should be able to learn some information to take back to their own environment for self care.

There's presenters that have come over here, international speakers that have talked about recovery. Every touch point of the organization and health system should spell hope. There's hope for me here.

Anyway, I can rave on quite a bit here. I usually like five minutes just to tell you who I am. But anyway, I hope you enjoyed the story. And thanks very much for the invite.

[APPLAUSE]

Mary Fisher, Paralympic swimming star and world record breaker

Video: Mary Fisher - Forum 2019 - Person-directed support

[Mary Fisher presents to an audience as part of the Person-directed support session of Forum 2019]

[Mary Fisher's mihi]

Thank you so much for inviting me along today. And it's been really interesting and wonderful for me as a person who's mostly working at ground level at the moment, in terms of disabled people's experiences, to hear about some of the policy and strategy and kind of networking change that we could have in a really positive way.

So I will talk a little about my experience, in terms of being someone who grew up in the early '90s in Upper Hutt and who was the first child of my parents, who had no experience in disability, really, but just thought, she's not doing the same things as the other children. Let's get her checked up. And they had a really good GP.

And I also want to make a strong point of my privilege, that I'm from a Pakeha middle-class family and that my parents had the time and energy of how their lives were when I was young to really focus on advocacy. And they had scientific background.

So when the doctors were like, yeah, OK. We found this rare genetic condition. It'll mean Mary has significant vision issues. We don't really know how much she'll be able to see, but she might have these other health problems. But we really just don't know.

So compared to a lot of other families who might have had negative experiences or had other things going on in their lives and might have very cottonmolled their children, I had the fortune that my parents just let me try all the different things.

And at the time I was starting education, the change was from all kids with a significant vision issue being sent to Homai in Auckland, no matter where they found I was from, in this very specialist narrow system, I was sent to my mainstream school, which I could walk independently to by the time I was seven. And it was just a few minutes down the road.

So I had all these things which enabled me to access other parts of society. I had very regular checkups with ophthalmologists. Yeah, across a quarter of a century, I have met a lot of them. Every few months, go and get a checkup.

And some of them are very much old deficit model, medical-based, biomedical approach we've talked a lot about and make me feel like I am a label and not listening to my other interests and assuming a lot of things, in terms of low expectations and what I'll be able to achieve academically.

Just because there hasn't been anyone visible in those types of positions that I might have wanted to go off and do, it doesn't mean that it's not possible. And also, some other wonderful experiences of health professionals having a really strong interest in my interests-- and I had about 10% of normal sight as a child.

And so I could read large print and kind of follow my friends around if they were wearing a bright color one day. And if the bright-colored blob shifted down a bit, I knew they were probably going down some steps. But yeah, all my friends were mostly non-disabled. And I did feel like a bit of an oddity.

And as a teenager, my eyesight got worse. And I learned to read Braille and learned to use a cane and a lot of things that meant, click, Mary has a visible disability, rather than just being a young person who walked into other people a bit more than others and didn't say the same colored netball poles on the court and stuff like that or had to hold something really close.

So there was a big change in my teenage life. And I think one of my coping mechanisms was to swim a lot. And so I went to two Paralympic Games. And I think especially from that experience, I gained a broad understanding of people pan disability, people's experiences all over the world.

So I got to recognize what we were lucky to have in New Zealand, but also the perception of us from people overseas, in terms of social justice and disability rights and environmentalism. And then I came home and was overwhelmed by not great experiences by people of my friends who are disabled and having really difficult experiences and mostly not individual people, but the systems that we talked about yesterday, like some things work.

And I've had largely positive experiences. But some things are really clunky. And so I think the big things for me are focusing on what people want. You might have two people with the same diagnosis. But actually, what they might holistically want out of their lives could be so different from each other.

And yeah, what does quality of life mean to someone? How can they do the best with what they have and have the right type of support? So yeah, I think those are the main things that I was keen to kind of share.

And it's accessible information. Yes, I still get sent print letters from the hospital that I cannot read myself. And it's an independence and autonomy thing. We do have the systems now that I could get those and read those independently. But I still have to get a flatmate sometimes when the system doesn't work quite right.

Yeah. So I think that will be good for me. Kia ora.

[APPLAUSE]

Graeme Norton, Chair, Health Consumer Councils of New Zealand

Video: Graeme Norton - Forum 2019 - Person-directed support

[Graeme Norton presents to an audience as part of the Person-directed support session of Forum 2019]

[Graeme North's mihi]

So yes, I'm the real Graeme Norton. I used the other one yesterday as a joke and he stole my jokes. I've been reflecting on the last day in a bit on what we've been listening to. And what's really good about being on this panel is that this might be the third time round that it's already changed from the first time round because the people who were on the panel have their lived experience of needing to cope with continuous change more than many of us might live in our lifetimes.

I think I won't talk about the social determinants model because I think Peter Crampton covered that this morning. But we are stuck a bit in a system that's top down, command and control. It's deficit based. It's clinically focused service delivery. And it's meets a whole lot of people have their own aspirations and abilities and understanding of what matters to them, who lead complex lives and make complex decisions.

So we have to figure out a system that actually balances things up so that the people who lead these complex lives actually participate in the decision making as to what those services will look like that will support them. I'm involved in cheering health consumer councils of New Zealand. That's really me on the end of a phone or sitting amongst boards or chief executives or EMTs figuring out how they might do consumer engagement better in their particular pitch.

But it keeps coming back to, each time we set one of these councils up, there is this stunning array of talent that is prepared to make a contribution to the way health works. But it's hanging on for grim death to its place in the system rather than being embraced by the system as the real super sub that never gets off the bench.

I think the other point I'd just make is, I like the shift in that model that Tristram showed about defense. I'd like to take it one step further and have the consumers helping to design what game gets played and actually playing in the game. So we don't just need to take the fence down. We need to invite people in to design what services look like and participate in those. And you might be highly surprised at what those services of the future actually look like when that really happens. Thanks very much.

[APPLAUSE]

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