Bonus questions for politicians

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Are the current speech and language therapy provisions adequate for children with Down syndrome?

Toni Severin (ACT): “I’m not 100% sure, and I’ve got to be honest with that, but I know in general, there is a shortage to get kids in, and it doesn’t matter if you have Down syndrome or are just having problems with speech. It’s just having enough people out there, which is a huge thing that we’re missing is a lot of qualified people.”

Jan Logie (Greens): “I think there should be the appropriate services for every kid in terms of being able to fully participate – so I think that means no!”

Maureen Pugh (National): “I have to be honest because I don’t know what the service looks like right now. I think the people with the best knowledge about these things are the people that work in it and use it. If we were going to make any decisions about that we would rely on the conversations happening between the users and the providers. I know that there is huge demand and probably not enough resource across all speech therapy, not just in the Down syndrome sector. We all know that more would be better, but we’ve got to be able to find better ways of providing services that don’t just keep requiring more and more money to be thrown at it when we can possibly find other ways. I will be guided by the advice of people involved in that. It’s a responsibility that we hold as policy makers to make sure that we’re not simply announcing funding for these things but we’re actually supporting the sectors to resource it.”

Priyanca Radhakrishnan (Labour): “I know that children with Down syndrome can benefit greatly from speech therapy in terms of addressing communication and swallowing delay and difficulties as well. I understand that it’s currently recognised as a skills shortage in New Zealand and that Government is working to encourage skilled SLTs from overseas to work here. The child development services provided through Whaikaha are going through an improvement programme at the moment, looking at what new funding models might be developed and what service pathways may be needed to be able to meet that demand. The shift toward Enabling Good Lives and the increased flexibility of services, will enhance the use of personal budgets for children to be able to access SLT. There is acknowledgement that things are tough in that space and demand has increased but there’s a range of things we’re doing to address it.”

How do you feel about the removal of the $5 co-payment for prescriptions?

Toni Severin (ACT): “It doesn’t add up. We do know that people are struggling to fill prescriptions. But we also know that there’s a lot of people that then pick and choose what prescriptions they do fill in general. So, it will help some but it’s about targeting the right people.”

Jan Logie (Greens): “While I’m really excited about removing prescription fees, I’m concerned there hasn’t been anything put in place to protect people’s access to Disability Allowance, Child Disability Allowance and Temporary Accommodation Service as a result of these add-ons with Work and Income, because it may mean that in effect for people and families that are impacted by our disabling society or have health needs, that it’s government giving with one hand and taking with another.”

Maureen Pugh (National): “We didn’t support it for a range of reasons. It’s not targeted, so it means that everybody has the benefit of prescription charges taken off. But the reality is that there are places now that don’t charge those $5 fees anyway. Community card holders and people who are high use, so that use $100 or more, don’t pay after that. When you’re on a high, high lot of medication, it doesn’t take long for that $100 to ramp up. But there are people who don’t mind paying that because the medication in this country, most of it is still available free of charge. We just thought that people who possibly still can afford to pay for it should be paying for it. And those in need should be the people who have that subsidy applied [to them].”

Priyanca Radhakrishnan (Labour): “That is an initiative in Budget ’23 that I’m really excited about. It sounds like a small initiative, but it’s pretty powerful. We know that in the last year 135,000 adults didn’t pick up their prescription because of the payment. This is an initiative that helps people stay healthier, then also that further downstream helps prevent additional costs to our health system, and it levels the playing field for community pharmacies as well. For disabled people, we know that because it’s often per medication rather than per script [that the $5 co-pay is applied to] it’s a cumulative saving. I am aware that through the Disability Allowance, some would have been able to access funding to cover prescription costs but that’s not everybody within the disability community. So, I do think it’s one that will particularly benefit disabled people if they are needing to access more medications.”

What should be top of mind for the Down syndrome community when it comes to the 2023 Election?

Toni Severin (ACT): “My biggest thing is for people to vote on the principles and values around the parties that they align with, and their beliefs as well. And, you know, we all want the party vote, so I’d like them to give it to ACT. But the biggest thing of all, for any group, is not go for what we call the lolly scramble policies, where different political parties will throw out titbits to try to attract you. Because, in general, what’s good for New Zealand is good for everybody.”

Jan Logie (Greens): “For me it’s about voting for a party that you believe is going to work to create the inclusive society where everyone in the whānau has the chance to thrive. Looking at what different policies there are and how they will work towards that end. I’m still a Green in terms of where we are at in the world with climate change and climate action. I don’t think we can separate those things. If we’re to be able to be settled and have hope, it’s about doing all of those things.”

Maureen Pugh (National): “My first reaction is to be really supportive of my own party of course, it is that time! But I think if anyone has any knowledge of the social investment approach that was developed by Bill English when he was Prime Minister… that is the National Party’s philosophy that we live by. We need to invest in social support, and we need to do it up front in a really considered way. So, we see that when we talk about social investment for our young people who are finding themselves in trouble. We’ve announced military-style academies because a lot of these kids now are leaving school unable to read and write. We need intensive wrap-around care for them, so they come out being able to make meaningful contributions to society in terms of their own families, their workplace because they need to be in work, and also their community. So, when people are voting they need to look behind the short-term lolly-scrambles that happen and look at the long-term, not only for individuals and communities, but New Zealand as a whole. More than any other time in history we can look at this at how we are pulling apart at the seams at the moment. There has never been a more important time to think about how we stitch ourselves back together as communities and as a nation. And hopefully when people are making their choices, they share that philosophy.” 

Priyanca Radhakrishnan (Labour): “At the start of this conversation Sarah you mentioned Easy Read voting guides, to enable people to participate and exercise their democratic right to vote, and I think that’s exactly what everyone should be mindful of, or aware of, that they have a right to vote and that this is how our democracy is strengthened. The other things I would say is that we’ve taken a number of steps towards ensuring disability communities have greater choice and control over their decision making but there’s still so much more we need to do in that space and working towards a society that is inclusive. There is political will to do that and I would encourage everyone to bear that in mind as they vote.”

Priyanca Radhakrishnan, Minister for Disability Issues, Labour Party By Sarah Paterson-Hamlin

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Radhakrishnan hosting Star Jam in the halls of Parliament

The Minister first came to Parliament in 2017, having been a member of the Labour Party since 2006. She was born in Chennai, India and went to school in Singapore before moving to Aotearoa New Zealand. She is also Minister for the Community and Voluntary Sector and for Diversity, Inclusion, and Ethnic Communities. She is Associate Minister for Social Development and Employment, and Workplace Relations and Safety.

In her role as Minister for Disability Issues, Radhakrishnan has been trying to meet with as many disability organisations as she can since taking on the role in February.

“One of the things I’ve really learned is just how diverse the disability communities are.”

So, for example, today I was out on [Auckland’s] North Shore to meet with I.Lead – a youth-focused group for young disabled people around leadership… after that I went to Creative Abilities which is also out on the North Shore which supports people particularly with high and complex needs, again, met with them to find out a little bit more about what they do but also some of the challenges for some disabled people there and also their families who are often the primary caregivers for them.”

Immediately before our interview, she had been at Hearing House which operates out of her Maungakiekie electorate.

“I got to witness the switching on of a cochlear implant for a one-year-old – which was really sweet!”

Though Radhakrishnan clearly enjoys these visits, they aren’t just for fun.

“A lot of what we’re wanting to do and working towards is a society that is inclusive and is accessible – knowing what the main barriers are and working across Government to remove them. That’s what I get to do as a Minister, and I love it – love being able to go out and hear from people directly.

“As long as I am the Minister this will be something I continue to do. One side of the Ministerial role is the engagement, and the other side is what we do with what we hear, and that’s what happens with the days that I’m in Parliament in sitting weeks. I’m talking with the Ministry Whaikaha and officials there about the work they’re doing to transform the disability support services system. I’m also giving feedback in terms of what I’m hearing; pressing issues, conversations that then need to be had, either with my Ministerial counterparts or with the Ministry or with other agencies and the portfolios they have as well. So far, I’d say so good – 

…people have been incredibly generous with their time and sharing what life is like for them, which is incredibly valuable.”

The Minister was proud of the Budget that the Labour Government released this winter, highlighting several aspects that foregrounded the needs of disabled people, including $863 million going towards the disability support services system, making Total Mobility half-price fares permanent, funding for specialist services for disabled people experiencing family and sexual violence, and contestable funding that allows organisations such as refuges to become more accessible “so if a disabled person decides a specialist service is the way to go or a mainstream service, they should be able to have choice around that service provision.”

One of the more complex challenges featured in this Budget, was the scrapping of the minimum wage exemption for disabled people. Radhakrishnan explained that this existed because of an outdated viewpoint that disabled people’s time was less valuable.

Radhakrishnan at a D Sport (Disabilty Sport) event in Wellington

“We’ve wanted to address that in a way that makes things fairer and ensures that disabled people can get at least minimum wage for the work that they’re doing, but to do it in a way that doesn’t then compromise opportunities for employment… The exemption that we’ve worked through is basically a top-up for employers, but the outcome is that it is fairer for employees.”

It’s impossible to view this most recent Budget however, explains Radhakrishnan, without seeing it in the wider context of the impact of the new Ministry Whaikaha, the first of its kind in the world, and the shift in mindset this represents.

“We’ve moved from a health model of looking at disabled people as needing to ‘fix’ the disability, to a social model understanding that people are further disabled by the society they live in and the barriers that are presented to them. The Ministry was set up to ensure that disability support services continue to be delivered and to transform that system based on the Enabling Good Lives principles. Their other purpose is to influence systemic change in government and across government agencies, to remove those barriers that exist in society that are disabling and disempower disabled people.”

The Ministry has been co-designed with disabled people and focuses on aspirations as well as need. Radhakrishnan describes its establishment as “transformational – because we’re moving from a system that is less flexible, which is government telling disabled people what they need, to something that really puts disabled people central to their own lives.”

She described the establishment through Ministry Whaikaha of Regional Leadership Networks, which ensure disabled people co-design the rollout of Enabling Good Lives nationally based on their knowledge of what some of the local issues in different parts of the country are.

“If you’ve got an ECE [Early Childhood Education] centre for example in that area of the regional network, that needs to be accessible for disabled people, this group will be able to work with them to help realise that.”

The past two Budgets have provided funding to roll the Enabling Good Lives (EGL) approach out beyond the three pilot sites where it is available currently.

“The evaluation from that’s been great. I’ve met with people who’ve gone through EGL in some of the pilot sites, and it’s clear to me, hearing their stories, the difference that the flexibility and shift in mindset makes. And then also their confidence, for example some being able to work as a result of it which they couldn’t do previously – it’s pretty powerful.”

Beyond the work that Whaikaha is doing in terms of support services, the Minister outlined the other key aspect of its creation which is something called “systems stewardship”. This is Whaikaha’s role of influencing change where decisions are being made across Government so that we move towards being a more inclusive nation.

“So much of what we’re hearing needs to change sits outside the Ministry’s issues portfolio specifically, when you look at transport, education, housing, access to healthcare, all of that sits with other government agencies. So, my expectation would be that Whaikaha works with other government agencies who affect change in those areas that are topical and most important for disabled people.”

Part of this will be Whaikaha’s role in leading the Government’s responses to the recommendations from the UN Convention on the Rights of People with Disabilities, working across all Government agencies to action change. As the first Ministry of its kind, Whaikaha also has a role to play in providing thought leadership on a global scale.

“We don’t want [Ministry Whaikaha] to be a tick box exercise. We want it to be something that really holds the government to account and creates progress across various areas.”

Beyond Whaikaha, the Minister also discussed the current Labour Government’s record on accessible housing.

“The need for more accessible housing gets raised with me a lot. It was only in 2019 under a Labour Government that Kāinga Ora adopted an accessibility policy that meant they now have a 15% target of all new builds to be built according to the Universal Design Standard. So we’ve been on a pretty ambitious plan to increase housing stock, but also now increase housing stock that is accessible which is something that we desperately need to do. We’ve just delivered 12,000 public homes which has meant we’ve been building more than any government since the 1950s. Kāinga Ora is on track now, mid this year, to meet that target of 15% accessible homes when it comes to their new builds. 

“So that’s an example of work we’ve undertaken as a Government to make sure that we’re progressing the needs of our disabled people and disability community but there’s always so much more work to be done.”

Maureen Pugh, Spokesperson for Disability Issues, National Party By Sarah Paterson-Hamlin

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Pugh during the height of the pandemic

 

Maureen Pugh has had one of the bumpier rides to being a Member of Parliament. Two elections in a row, in 2014 and in 2017, despite what initial results indicated, she ended up just missing out on being a List Member for National. But then in 2016 and again in 2018, she did end up as an MP when she replaced MPs who were leaving. This led Pugh to describe herself as the ‘yo-yo MP’! But in 2020, she had a much higher list ranking, and came into Parliament without any further yo-yos.
Today, she is the National Party’s spokesperson for disability and carers, and also holds the community and voluntary sector portfolio. Putting disability and carers together in the same portfolio is something that was only introduced in the National Party in January of this year when Pugh took over the role.
“From a National Party point of view, the two roles are intertwined and inextricably so.”
Being relatively new to the role, Pugh works closely with her predecessor, who has a close connection to the Down syndrome community.
“My colleague, Penny Simmonds, she herself has a Down syndrome daughter, and so we still work very closely together… I think between the two of us, we will be able to make some really good, positive inroads.”
Pugh describes the disability and carers portfolio as “a much bigger portfolio than I thought it was going to be, because

there are so many strains to it, from intellectual or mental disability through to physical disability, and even temporary disability through accidents for example… We’re talking over 20% of the population of our country.

So it’s not insignificant in terms of the people that it impacts, especially when you consider the flow-on effects within a family or within a wider whānau group.”
Prior to her time in Parliament, Pugh was a Councillor and then the Mayor of Westland. Through that role in local government, she came into contact with people in her community with Down syndrome and other disabilities. Discovering the work of nation-wide networks such the New Zealand Down Syndrome Association has been an exciting learning curve for her in more recent months. Pugh’s earliest memories of disability were of her intellectually disabled uncle, and her grandfather who became paraplegic in a mining accident before she was born. He later learned to drive with a special all-in-one clutch, brake, and accelerator.
“I’ve still got that mechanism that he had to be attached to cars!”
Regarding more recent developments, Pugh agrees with Chris Ford’s assessment that the 2023 Budget released this winter by the Government “only does just enough but no more for disabled people.” Although she appreciates any government faces a gap between what they’d like to do and what they’re able to do because of financial constraints, she spoke to some of the other options available.
“I’ve had some very good conversations with people about some of the non-financial support and changes that could be made, simply around committing to not increasing barriers when anything is being decided. We’d like to make sure we’ve got that target of 15% accessible homes which looks like it might be getting to the target, but that’s not all there is to it. There’s very simple things, like a brand new pedestrian crossing being installed right behind the beehive. But when the light goes green, there’s no sound telling people that you can cross the street… These are the sorts of things I’m talking about.”
As Kim points out in her President’s Pen this season, the Down syndrome community has not been immune from disagreement regarding COVID-19 vaccinations. This is something Pugh has also had a journey with, being described by media as a “vaccine holdout” after being one of the last MPs to get her vaccine, several months after they became available.
She discussed her initial decision not to get vaccinated and then her ultimate reversal of that decision in order to be able to do her job.
“I think the division that has happened in this country as a consequence of the mandates and still happens has been heart-breaking. And I saw many cases in public meetings that I’ve been to where families have been divided, because of the fear that was created around COVID. And I think ruling by fear is a cruel way to manage anything… It has been a very divisive time in New Zealand’s history.”
The National Party has released their ‘Welfare that Works’ policy, which includes Job Coaches, intensive support for Jobseekers, and sanctions. This last aspect of the plan in particular has drawn significant criticism from disability advocates such as Jonathan Mosen, the Workbridge CEO, who describes it as unfair “to sanction disabled people for other people’s misconceptions.”
Pugh has a more optimistic view, responding that it would defy common sense for disabled people to experience these sanctions “and I doubt very much whether we’re going to do away with common sense.”
This existing lack of common sense within the Ministry of Social Development is something she particularly took away from the experience of being on the select committee for the Accessibility for New Zealanders Bill.
“We had a young man come in and talk about having to get a doctor’s opinion every year [for Disability Allowance]. He says, I’m an amputee, my leg isn’t going to grow!”
When it comes to this Government’s removal of the minimum wage exemptions for disabled people, Pugh was disappointed in the move. She spoke warmly of visiting Kilmarnock Enterprises in Christchurch.
“They are not there to exploit or to make profit, or, you know, unreasonable profit, because everything comes back in to supporting the people. And so, when you do away with [minimum wage] exemptions then you put those places at risk. So, we’ve been very supportive of places like that, those social enterprises that support people.
“I’m very keen to make sure that [social enterprises] are recognised for the work that they do and the work that the employees do, like the Down syndrome people that work there, is also valued. But we also need to understand that they will never have the same production as someone who is able-bodied or able-minded would be able to contribute. So, it’s fair reward for fair effort. And I think we do a real disservice to places like that in terms of the social interaction that happens and the learning that goes on.”
In New Zealand’s MMP electoral system, any National-led Government is likely to need the support of the ACT Party, just as any Labour-led government would need the support of the Greens and potentially Te Pāti Māori. With ACT having discussed reducing or eliminating a number of Ministries, it was important to seek clarification from Pugh on this issue.
“If you’re talking about wasted expenditure then that’s very much where we will go, but reducing funding and support for those in need… we are actually looking to increase support. What that looks like is yet undecided.”

 

Pugh with former National PM, Bill English

 

“I’m absolutely adamant that there will be no reduction in funding for the disability sector.”

Pugh was part of the select committee that oversaw the Accessibility for New Zealanders Bill. While she and the National Party ultimately opposed that legislation, she describes it as a helpful process to have been a part of for her role in shaping National Party policy on disabilities and carers.
“We had a huge number of submitters come along, and a lot of that information has helped inform me of not only the challenges but the solutions that people have got in the disability and carers space.
“I try to step back and look at the whole picture and how we as a National Party look at the whole social investment approach investing early and up-front for long-term benefit. But of course, that’s an expensive first hit, and until we know what commitments the current Government is lining up for the next few years, we don’t know what the financial situation is going to be, so it would be irresponsible of us to make a commitment now and then find we have to walk it back because there’s simply no money left.
“The commitment that I have made is that we will continue to have those conversations across the different ministries, because we can’t make a decision in a siloed way… we all need to be cognisant of each other’s portfolios.”

Toni Severin, Disability Issues Spokesperson, ACT Party By Sarah Paterson-Hamlin

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Severin, the Prime Minister, and Grant Robertson at an event to celebrate the Special Olympians

Toni Severin is a List MP for the ACT Party with the Disability Issues, Corrections, and ACC portfolios within her party. She is nearing the end of her first term in Parliament and lives in Christchurch East with her husband.
Severin describes that the day to day of this role involves shadowing the Government’s work as it relates to her portfolios, sitting in on select committees, answering questions from people who get in touch with her, and helping where she can.
“I also write what we call parliamentary written questions. So, if somebody [else in the ACT Party] sends me something, and I think, well, this is a little bit odd, I can see if there’s answers that we can get from the Minister for Disabilities.”
Although contact with NZDSA was new for her, Severin does have personal experience when it comes to the Down syndrome community.
“I do have a godson with Down syndrome. I haven’t seen him as much as I’d like to in the last three years, and it’s just amazing how quickly he has grown from a little boy to now a teenager. My husband had an aunt with Down syndrome. [ACT List MP] Simon Court, his youngest, Louis, has Down syndrome. So, our whole caucus is quite familiar with children and adults with Down syndrome.”
Severin also has lived experience of a learning disability, having been diagnosed with dyslexia at the age of 21. Identifying learning disabilities within the education system is one area where she sees the biggest need for change In Aotearoa.
“There are great teachers out there that identify [learning disabilities]. But also, with all the teachers that I have spoken to, or even the trainee teachers, a lot of them don’t get any training on it. I’m also a big mover to really look at how they’re teaching reading. And that’s what Speld and Mike Stiles is trying to push with a petition. This has been left too long, and we’re now reaping the consequences, because if you haven’t been picked up, if you’re now an adult, where are you? Are you gainfully employed or are you struggling or are you in prison?”
When asked about her opinion on the Government’s Budget that was released this winter, Severin’s main concern was how the new Ministry Whaikaha was spending.

“We would like to know what the Ministry Whaikaha are actually doing with the money and budget.”

To my mind, what Whaikaha should ideally be working out is what are the needs, because we know they are very vast. But we still need to know what is happening with all that money that has been given.”
One of ACT’s policies is disestablishing the Human Rights Commission. I asked Severin what this might mean for people with conditions such as Down syndrome, when the Commission works in areas such as accessible housing, employment rights for disabled people, and inclusive education.
“I’d hope that Whaikaha would be the one-stop-shop and take on that role. They should be the ones that should have a little bit more power around housing design, as well as employment, but also listen to all groups, because I know some groups have been shut out.”
The ACT Party is founded on principles of reducing the size and scope of Government, so would a Government with ACT as a coalition member consider disestablishing Ministry Whaikaha or reducing its scope?
“We would like to know what they’re doing, and what their basis is because at the moment, they’re a year old, and I know that they’re still establishing themselves. If anything, we just don’t want it to be a tokenism ministry, we want it to actually work for the disability communities, and listen to all because you know, [some groups have] bigger representation, have ‘the ear’ as I have understood, for many years.

“We need to be all inclusive, and some groups might not like each other. But we have to include everybody, because we need to hear everybody’s voice.”

Member Severin was cautiously positive on the principles of Enabling Good Lives that underpin the Ministry Whaikaha, stating that she sees “most of that as being pretty good.” However, she pointed out that it was still early days.
“We also know that one size does not fit all. So, we have to make sure that Enabling Good Lives is actually working for those different areas.”
The unemployment gap for people with a disability is a significant one, and it is even more serious for people with Down syndrome and similar conditions. ACT has a welfare policy to introduce Electronic Income Management. This is where people receiving a benefit have their spending controlled via the use of an electronic card. Their website states, “it is not the recipient’s money. It is taxpayer money and has always been given under a range of conditions such as seeking work.”
I asked Severin what this might mean for people who face serious barriers to employment, such as those with Down syndrome, and whether this would represent a restriction of freedoms and choices that Enabling Good Lives seeks to move away from.

Severin (front) at an ACT Party planning day

“It’s not so much for the disability community, it’s more for the more able-bodied people, especially around those that are not necessarily taking employment when they could, those that you know, are short money all the time, constantly going back to WINZ asking for top-ups because they can’t afford the power etc. because we know that the disability community’s needs are different, so it’s more around, you know, the unemployed, those on the child support benefits and all that sort of stuff.”
A few hours after our interview, Severin called me to let me know she’d taken the query back to her colleagues and confirmed that the policy was not aimed at disabled people.
We also discussed education, and ACT’s plan for a Teaching Excellence Award scheme. Given recent calls from teachers’ unions for funding for classroom support rather than their own pay necessarily, I asked if a Teacher Aide Excellence Award might also be on the cards. While it isn’t currently, Member Severin did write it down enthusiastically to take to her team.
As one of very few MPs with a known learning disability, Member Severin had these words of inspiration for Chat 21 readers.
“Well, one thing I’ve learned is that we’re all able, and we’ve all got abilities, and it’s just a matter of recognising our abilities, and being able to use them to our full potential. It’s identifying our superpowers and using them, and not to give up. I think you need to find what you love – the passion.”

Jan Logie, Disability Spokesperson, Green Party By Sarah Paterson-Hamlin

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Jan Logie has been a Member of Parliament for the Greens since 2011. Originally from Invercargill, she studied at the University of Otago and now lives in Porirua. As well as being party spokesperson for disability, she also holds the ACC, Child Poverty Reduction, Children, Public Services, Te Tiriti o Waitangi, Women, and Workplace Relations and Safety portfolios.
Logie explains that all her portfolios connect, and that she tries to incorporate the interests of disabled people in everything she and her colleagues do. “We work with disability organisations, firstly through the Inclusive Greens within the Green Party – which is super helpful for guiding me in my work, because

…the way I try and approach the work is consistently ‘nothing about us without us.’

For me, as someone who doesn’t identify as having a disability, it means that I’m trying to ground everything I do with people who have lived experience.”
She also spends as much time as she can working with organisations such as Access Matters and People First, for example when it comes to the Accessibility legislation that is currently going through Parliament.
“My very first term in politics I did a tour around the country with a colleague around economics and politics and how do we change so the systems work for all of us? People First had a speaker at every single one of these events about the rubbish reality of working a full-time job and still having to deal with Work and Income – the lack of respect.
When I go around the country and touch base with communities, I’ve been trying to go out and meet with different disability organisations and providers to try and get that sense of the national voice as well as local issues and realities.”
Highlights for Logie from the recent Budget include the removal of the minimum wage exemption and extensions to Total Mobility. She was, however, concerned that the new Ministry Whaikaha wasn’t receiving the funding it needed to achieve its remit.
“I really want to acknowledge that from a government’s perspective it’s a really critically important piece of work and it is complex, but I worry that we’re not yet seeing the kind of drive to get the changes in place and deal with some of those gnarly issues.”
She’d also hoped to see more in the way of increases to benefits for those living with disability.
“We have so much evidence in terms of the impact of poverty and how entrenched that is for disabled people and families impacted by disability, that I am really gutted that we haven’t yet seen anything specifically to address those levels of poverty for disabled people.”
Within her ACC portfolio, Logie is keen for reform. She points out that when ACC was initially established, it was set up as a first stage, with the idea that ultimately all situations where rehabilitation, social support, income compensation and other things would be covered, not just when a specific accident was the root cause.
“We know the boundaries of the scheme are imbedding inequities by the cause of disability and also that disabled people are struggling to access the scheme for genuine accidents. The number of stories I’ve seen where people’s injuries have been overlooked because of assumptions and biases within the health system, or they’re told – far too often on dodgy medical grounds – that it’s somehow connected to your condition. Which I do not believe is consistent with how the scheme was intended or the public good, let alone the rights of the people involved.”
Logie has spoken passionately in the past about the need to enforce the rights of disabled people and has several ideas as to how this could be progressed.
“I support the need for there to be more social marketing to address discrimination. I think there’s a lot of work to do as a country in terms of getting our heads around the value of diversity in lots of different ways.
Recognising people with Down syndrome might also be Māori or Pasifika or women or queer and there’s intersection. As a country I think we’re coming to that point where we’re getting ready to have those conversations.

 

Logie accepting the Access for All petition at Parliament

 

“Looking at the Accessibility legislation that’s going through parliament at the moment, [the Greens] are supporting the call for standards to be able to be set and legally enforceable, because even where we’ve got them they are unenforceable. Our schools are supposed to be inclusive by legislation for example, and yet…
“The ERO report on the inclusiveness of our education showed that it’s not necessarily about the amount of money that the schools have because poorer schools are showing that they are often more inclusive – I feel like that needs to be repeated often. There was that recommendation for an independent oversight, and I think that’s really important, because this has just drifted for decades.
“Our building code is the same. Accessibility standards are not being met because there is no consequence. And I get that you don’t necessarily jump to consequences before you’ve done the education, but we’ve been having this conversation for a very, very long time, and when some are doing it and others are not, that really starts to look like a conscious choice, and that sits very badly with me.”
The Greens are predominantly known for being an environmentalist party, so I asked Logie how environmentalism supported people with Down syndrome.
“This is a little bit of a weird answer – but I think in terms of us and environmentalism, it’s about recognising that the world is an ecosystem and humans are part of that, and an ecosystem needs diversity. So that means that when we’re looking at communities and people, that’s also part of our thinking – how do we support this diversity to thrive – as opposed to shutting things down or having a one-size-fits-all.
“So, I think our environmentalism is part of why we’re so passionate about this work [in the disabilities sector]. We want everyone to be a part of this work towards a future where we’re living in balance, avoiding catastrophe. Then it’s the smaller things like making sure there are walks in nature and people can get into wild spaces that are accessible to a range of people’s needs and that the information about that is in a format that people find understandable. It’s about that integration of it all.”
When it comes to the new Ministry Whaikaha, Logie was hopeful, and keen to see it develop further.
“I think it’s a really crucial important step. I’m really hopeful about it. My concern is whether it is independent enough. I have so much respect for the CE [Paula Tesoriero, former Disability Rights Commissioner] and have great experiences of being at the other end of her advocacy when she was at the Human Rights Commission. That work of being that person to champion change across the public sector from the inside is useful, but I do worry a bit in terms of the roll out of Enabling Good Lives and the role of system change and monitoring. How do you monitor yourself?”
Logie described her ideal election result as being a strong Green Party with around 15-20 MPs supporting a Labour-led Government. If that happened, she had high hopes for what her Party could deliver for people with Down syndrome.

“Inclusion and equity are at the heart of Green Party values and kaupapa. Government has a huge amount of work to do to remove the barriers to living a full life that are currently in place. That is something that is central to our thinking.”

Te Pāti Māori By Sarah Paterson-Hamlin

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We had hoped to bring you an interview with the disabilities portfolio holder from all five of the current parliamentary political parties. Unfortunately, Te Pāti Māori did not respond to our invitations, and as they are the smallest parliamentary party with only two MPs, they do not have allocated portfolios in the same way as the larger parties.
In lieu of an interview, we have pulled together some of Te Pāti Māori’s policies currently available for Election 2023 that relate to disability and located quotations from their two MPs and co-leaders.

Income and welfare policies

  • Double baseline benefit levels,
  • individualise benefits,
  • remove financial penalties, sanctions, and work-test obligations, including repeated proof of disability or sickness.
    “The evidence is overwhelming that incomes are inadequate for many people, both those receiving a benefit and those in low-paid work. Current levels of support fail to cover even basic costs for many people, let alone allowing them to meaningfully participate in their communities.”

Education policies

  • Fund free digital devices and free internet for all children from Yr4 – Yr13
  • Remove the power of schools to expel any student younger than the school leaving age of 16
  • Establish a Māori-led taskforce with the mandate to transform how Māori students with disabilities and learning differences are taught and supported.

“Excluding children from school does irreparable harm – 51 per cent of all prisoners were kicked out of their schools as children. The education system must be responsive to the needs of all students, not throw up its hands and leave young people to fend for themselves.”
“The education system has completely failed to support tamariki who learn differently and have extra accessibility. Four in ten disabled Māori adults had no formal educational qualifications – almost double the proportion of non-disabled Māori.
We know that there needs to be greater resource for funding support teachers and appropriate facilities and ensuring professional development for educators.”
Co-leader quotes
Rawiri Waititi, Parliamentary debate, June 2022: “Around 26 percent of Māori identify as disabled, 40 percent of the Māori adults with disabilities have no formal education qualification, almost double the proportion of non-disabled Māori. We need to massively overhaul funding for support teachers, appropriate facilities, and professional development for all teachers.”
Debbie Ngarewa-Packer on steps of parliament to disability rights advocates, March 2021: “We saw the pain that the whānau went through to just give her [Ngarewa-Packer’s niece) the beauty of freedom and dignity…To all of those of you here today that teach us in every way, what discrimination takes away, and the opportunities they don’t afford for the absolute magic you have within you.”

Shona & Roderick: a lifelong relationship By Sarah Paterson-Hamlin

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Siblings together

We’ll probably never know for sure, but Shona suspects that her little brother, Roderick, might be the oldest person with Down syndrome in Aotearoa. Shona was two when Roderick was born, and the two have now been blessed with 75 years (and counting) of a loving sibling relationship which has helped shape the lives of many other families as well as their own, through the pioneering work of Hōhepa, which came about because of Roderick’s birth.

Shona and Roderick Stronach were born in the 1940s, and spent their early years with their parents and older twin sisters, Marian and Marjorie, on the wild and rugged Highcliff area of the Otago Peninsula, where the family had a clifftop farm. Shona only has vague memories of Roderick crawling along the passageways of that home, as both were still quite small when the family relocated to the gentler vicinity of Tomohawk Lagoon. 

“We bordered that lagoon and we had a wonderful life,” Shona recalls. “And of course there are a lot of stories about Roderick’s adventures there! He was a great one to run away. Once, we couldn’t find him and our mother found him right down the bottom of the next-door paddock – he was under the legs of a bull!”

It was a large family home, and Shona and Roderick spent much of their time playing together there. 

“We had this big veranda and we had this four-wheel jigger thing that I used to push him in. We created ghost trains and things like that,” Shona laughed as she recalled these early years together. “I was obviously a fairly helpful caregiver in terms of entertainment! Those were lovely memories.”

Shona can’t recall any negative attitudes towards Roderick – only the care of the neighbours. She also can’t remember her parents discussing the fact that Roderick had Down syndrome with her, or that she had much consciousness of it at all until the age of about 12.

“I do remember at early adolescence being self-conscious and realising he was different, and having to really grow to accommodate that over, maybe two or three years coming to terms with it.”

From his youngest years, Roderick possessed a friendly, warm, and radiant nature. “At family picnics you’d look around and say ‘Where’s Roderick?’ and he’d be off with the next group saying “I know you!” That’s lasted his lifetime those words – ‘I know you!’ – and that lovely friendliness and warmth.”

At that time, integrated or mainstream schooling weren’t options for Roderick, and so from the ages of seven to about ten, he attended Sarah Cohen School in Dunedin, a school established for pupils with special needs in 1926 that is still going strong today. Roderick was not academic, and though he learned some letters there he never became fully literate. 

In the background of the family’s lives, since the time of Roderick’s birth, their aunt, Marjorie Allan, had been pursuing ambitious goals that were inspired by her new nephew. At the time, Marjorie was overseas in London studying the work of Rudolph Steiner. When Roderick came along, she decided to move into training for therapeutic education and social therapy for people with intellectual disabilities based on Rudolph Steiner.  

Waipatiki picnic

“When Roderick was born she came back to meet him, then she returned to Europe and trained in the various Rudolph Steiner curative and therapeutic homes and schools where that work was developed and gathered up as much experience as she could. And then in 1956 she came back and toured New Zealand and lectured about the work, needing funds of course. When she was in Hawke’s Bay, a farmer called Lew Harris who had an intellectually disabled daughter, came forward and really wanted to help with the work, and was a really generous benefactor and donor.”

Thanks to Lew Harris (later Sir Harris), in 1957 the very first Hōhepa building was erected in Poraiti in the Hawke’s Bay, and became a residential school, initially for only nine children. One year later, a ten-year-old Roderick joined Hōhepa. After a short time in the school, he moved on to the newly acquired farm property in Clive, where he was to spend the next six decades of his life. 

Two years after Roderick made the move to Hawke’s Bay, Shona and her mother followed, their father having passed away. 

“My mother, Mary Stronach, took on the management and care of the house with the children and that freed up my aunt to concentrate on the valuable teaching and therapeutic work. My mother had a very important role holding the whole management together in terms of practicalities. She was good value! I went to Napier Girls High School but I lived there [at Hōhepa]. So it was an interesting time!” 

By this stage there were about 24 children, living in dormitories of six to eight, each cared for by women known as ‘dormitory mothers’. Though he was now living at the farm in Clive, Shona and her mother were thrilled to be reunited with both Roderick and Marjorie.

“You have your own life too by that age, so it was an interesting transition, but I was always very grateful for what I learned and received through Hōhepa. As a teenager you don’t always recognise it at the time! But I mean really it was wonderful. I got a chance to be one of the dormitory mothers on the weekend and I began to take responsibility which is good for teenagers.”

Once at the farm, Roderick initially lived at the main house and underwent some transitional schooling, alongside craft work, music, and therapies. At the beginning of his teens, he went to live at Anyon House, one of several small houses for around half a dozen residents at a time. At about this time, his mother and aunt purchased a beach house at Waipatiki that was to become a second home for the family.

“We’d all be there for weekends or holidays and my sisters would come down too. So this beach at Waipatiki was very special and a lot of the people who worked at Hōhepa shared that as well.”

Over the next sixty years, Roderick moved through various stages of life at the farm, always directed by his preferences and aspirations.

“He moved himself through his life stages at the farm, he was a farmer and a gardener, and used to get the milk and work the cows. Then he moved into the workshops and did woodwork and then there was the copper workshop. Each time he would let people know he wanted to move on.”

Highcliff farm

As he got older, Roderick struggled with the noise of the copper workshops, having never liked loud sounds. He chose to move on to the candle workshop, before eventually selecting what he termed ‘Quiet Care’ – the retirement home section of the Hōhepa community where he still lives. Though he has many interests, two in particular stand out to Shona that he’s been able to enjoy more, once moving into retirement.

“He carries an enormous interest of the officialdom of all the meetings that he’d been to with my aunt and the Trust Board and conferences. That was in him, and he’d take his bundles of papers and do his office work. In 2018, he was given honorary life membership to the Hōhepa Homes Trust Board.”

The other great love of Roderick’s life has been classical music – unsurprising when considering both his mother and aunt began their careers as music teachers before the Hōhepa journey began.

“He always wanted to be a conductor, if there were any musicians around or bands at the fair or anything, he would be up there conducting and he was good too. Music was one of his real loves and he still has that.”

Now an “elderly and distinguished gentleman”, for the past year or so, Roderick has been unable to weight bear, and prefers to spend most of his time in his room. “But he’s still very present. I was there last week and we had such a good time – the cat had got up on the arm of his chair and was determined to interject in our conversations. It was lovely, Roderick was right on the ball. But then the next day he was just so tired.”

Although less physically capable, Roderick’s mind is unaffected by dementia, and he retains the ability to “just radiate” that Shona recalls characterising him from his infancy.

“He never had any shyness. He would just go up to people. His “I know you”, that was to strangers, but people he knew he would say ‘Are you happy?’ He’s 75 and that’s the main thing that he says now – ‘Are you happy?’. It was like, when you reach out to somebody you’re telling them that you recognise them. So that’s followed him all his life. He has a lot of humour and I think I played up a lot with that too in terms of the fun and the games and the songs, you know. Even now he’s not so capable but he can come up with some incredible humour. He’s got a twinkle in his eye behind what he’s saying.”

Recent chat

Shona lives in Christchurch now, but the siblings have never stopped seeing each other multiple times a year, and their bond is indelibly strong. “When we’re together there’s no barriers between us, we’ve got a good rapport.” 

Just as Roderick’s arrival started her mother and aunt on an extraordinary journey that would ultimately found the beloved Hōhepa organisation, so too was Roderick always a part of Shona’s life pathways.

“As a 5-year-old I announced I wanted to be a children’s nurse when I grew up. And that resolve followed and shaped my career decisions throughout my life. I trained as a nurse and stayed close to the work with children. I lived up in Hawke’s Bay for ten years and for a good six of those I was working as a community nurse at Hōhepa.  I think the care model which surrounded Roderick very much influenced the course of my life.”

Today, Hōhepa has branches in Canterbury, Auckland, and Wellington, as well as the original community in the Hawke’s Bay incorporating both the original school community at Poraiti, and the 50-acre Clive farming and workshop community where Roderick lives. 

“Some might say that Hōhepa is an institution but it’s not. It’s a community of people and wonderful people that come and go from all over the world… The essence of Hōhepa is community and it still is, it’s not institutionalising. I know Hōhepa’s had to work very creatively to retain community but also to be out in the wider community. It has widened its web but it hasn’t lost its community sense.”

It’s a community – and now series of communities – that have made an immense difference to so many lives: residents, students, staff, volunteers, and Trustees, and without Roderick Stronach, who knows if it would have ever come to pass? Shona speaks with an incredible warmth, respect, and love for her mother and aunt, and for the many others who have worked to continue their legacy at Hōhepa. But most of all, her affection shines through when she speaks about her brother.

“I hope I’ve given you a reasonable picture of somebody who is very special.”

 

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Heart kids

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About 50% of new-borns with Down syndrome have congenital heart disease. Often, this means surgery while still a baby, but the prognosis in New Zealand is excellent, and the overall risks of this surgery are no different from the general population according to research released last year in the Journal of Congenital Cardiology.  We spoke with Ashley Mills, the Hospital Family Support Co-ordinator for Heart Kids NZ, a fantastic charity that supports whānau throughout the country who have children with congenital and acquired childhood heart conditions, to find out more about their work and heart conditions. Their website is www.heartkids.org.nz  Many NZDSA members know first-hand the amazing work that Heart Kids NZ undertakes every day to ease a challenging journey. 

Where can babies receive heart surgery in New Zealand?
Starship Hospital is the only place in Aotearoa that does cardiac surgery on babies.

What professionals are usually involved in a paediatric heart surgery?
Paediatric cardiologists, surgeons, nurses, anaesthetists, radiologists and possibly some others depending on the circumstances.

Is there more than one kind of heart surgery?
Yes, there are lots of different types. There is open-heart surgery, where the chest is opened and the patient goes onto bypass, and there are other types of heart surgery and cardiac procedures that don’t require open-heart that can be done by cardiac catheterisation.

Your baby having surgery is of course a scary and stressful time for whānau – how do Heart Kids work with families around this time?
We connect with families in the community and/or the hospital, we are there to listen, to inform, to support, to walk alongside them whatever their needs are at the time.
This may mean a home visit before the surgery to help families prepare – with information, practical, emotional, and at times financial support. Or it could be a phone call, or it may mean visits from a hospital Family Support Taituarā (FST) on the wards in Starship who will connect, provide emotional and practical support, provide information, and be a friendly face who can listen and spend time if needed. We take into consideration the whole family as well, siblings for example. We can assist to refer to other agencies or support if this is required.

What can a family expect in the weeks following a surgery?
It really differs from family to family. Some are in hospital for many weeks or months before they can go home or transfer to a hospital closer to home, others will make a quick recovery and be home within days or weeks. Emotionally, we continue to support them during this time, and when they are home in the community Heart Kids NZ FSTs engage and offer support and connection in the local community. 

In hospital after open-heart surgery, there is a pathway: time in PICU immediately after surgery where they will be constantly monitored, the parent cannot stay overnight, then, when ready and stable, they are moved to Ward23 B to the intensive observation room (IOA) and the parent will still sleep elsewhere. Many medical procedures will happen over this time, baby may do well one day then have a setback another, re-establishing feeding can be problematic and take time, sometimes another surgery is needed, other times they progress straightforwardly, move to a single room where the parent can room in and then baby will eventually recover and go home. Families from out of town will sometimes be without their other children or have limited support from a second parent during this time, depending on their circumstances, and COVID-19, so are often quite alone which can be stressful and exhausting. Once they do go home the situation will vary, some can get back to a “normal” life pretty much straight away and others will have longer-term things that need managing.
There will be follow-up appointments, periods of rest and possible isolation, but depending on the surgery and procedure timing will be different for every family. 

What can they expect longer-term – do most babies make a full recovery?
Again it really differs from child to child, depending on the Congential Heart Defect (CHD), what surgeons are able to do and a whole raft of other factors. CHD can never be “fixed” but after some repair surgery e.g. coartation of the aorta or a VSD or ASD closure, many will live a full and normal life with only occasional cardiac check-ups needed or even be eventually discharged from Cardiology services if it’s deemed they no longer require follow up.
Many others will need continual regular monitoring. They may require further surgeries as they get older, others may have frequent check-ups, regular Cardiac Catheter procedures and other interventions to tweak previous surgery or deal with ongoing changes caused by the CHD such as valves repaired or replaced, arteries ballooned, or pacemakers put in.  This may require further trips to Auckland. Some will go years before needing follow up and never need any other intervention. Feeding and trying to gain weight can be an ongoing issue when home awaiting the next surgery. Cardiac babies may get complications if they get something like a cold so this can impact on the family and how isolated they may need to be. I can say that many of them, despite their condition, live life to the fullest and have resilience and attitude that sees them get the most from life!

What is some good advice for parents expecting heart surgery for their little one?
Ask all the questions that you need answers to in order to make yourself feel comfortable – this will vary from parent to parent. Be prepared that things will change and change again, that it’s not always possible to have all the answers beforehand, plans and schedules can change, and taking it day by day is the only way to do it.
Be reassured that we have amazing, dedicated, world-class surgeons in Starship Hospital, and that everyone involved in the team will do their absolute best for your baby.
Ask your friends and whānau for support – and accept it – it can be a long road ahead for some and having support in place can ease some of the stress.

Do you have a number one recommendation for something to bring into the hospital?
Something of comfort for your child like a favourite toy or blanket (or device they can look at in bed to distract).

What other types of support can Heart Kids provide?
All kinds of things! We offer camps, forums, connections in the community with other heart families, education, advocacy, bereavement support, and antenatal support. Our website is a great place for families to find more information, resources, connections, news and heart stories from across Aotearoa:
www.heartkids.org.nz 

 

Reference:
Delany, D.R., Gaydos, S.S., Romeo, D.A. et al. Down syndrome and congenital heart disease: perioperative planning and management. J Congenit Heart Dis 5, 7 (2021).