Intergenerational Impact: Partnering for Progress

From the challenges of staying focused in the face of obstacles to the design of purple-haired avatars (read on for more on that!), a common thread was that as much as some things change, the need to ‘hang in there’ and unite to advocate on key issues remains critical.

In the words of Parent to Parent’s favourite whakataukī, or rallying cry: Ehara tāky toa i te toa takitahi, engari he toa takatini. My strength is not that of an individual, but that of the collective.

Parent to Parent’s Wellington SibCamp (June 2024), funded by IHC

The impetus to advocate

It was as a child that the segregation of disabled people within institutions caught the attention of Janine Stewart, IHC’s General Manager. On her daily walk to school past one of the first IHC hostels and a Special School, as they were known, she remembers the feeling that something did not sit well with her, “I always thought, ‘this is weird; I walk right through the middle of them, through a park, to go to another school on the other side.'”

These formative experiences set Janine on the path to her future, three-decade-long career at IHC. The social conscience of her parents, who fundraised for IHC, and the drive for deinstitutionalisation—which was gathering pace when she entered the workforce as a support worker—led her to IHC’s door. There, she became part of the push for disabled people to live in communities and families, not locked away.

Deinstitutionalisation was the key issue around which disability organisations came together 40-plus years ago when Parent to Parent was formed. The two organisations’ first collaboration was in 1983, when JB Munro, then National Director of IHC, persuaded IHC to help fund the promotion and establishment of Parent to Parent groups outside Auckland with a $5,000 grant.

The importance of resilience

On the day we spoke, Janine had just been told it was the exact day of her 30th IHC work anniversary. In the first years, her career overlapped with JB Munro’s, a hugely influential figure in the disability sector.

“You stay because there are so many amazing people—colleagues, families, and people with intellectual disabilities. And there are these moments of change when you go, wow! We’ve got disabled kids going to their local schools because we’ve lobbied hard for that. It will never be good enough, but we make these gains.

“Gradually, then suddenly, the voices of intellectually disabled people were being heard, their self-advocacy. People First had been part of our organisation before becoming independent. They’re celebrating their coming-of-age 21st Anniversary this year.

“Things shift and change, and we went through a major phase of supporting parents to step up, have a voice, and do the lobbying. Organisations such as Parent to Parent became vital in supporting family advocacy, so it was more than just paid professionals speaking out. The more advocacy from those directly impacted by policy, who will benefit from change, the better.”

This year, IHC turned 75. Older generations, both familial and organisational, have experienced how a strong vision—the focus and flexibility it lends—helps develop resilience. Since the 1950s, IHC has seen some hard-won progress towards its vision: Great lives for people with intellectual disabilities.

“The path forward is not always transparent or linear. Sometimes we need to pivot backwards; sometimes something completely novel is needed.” Janine stresses. “But we’re supposed to be making life better, easier—doing what we can to support intellectually disabled people and their whānau. If you stick with those core propositions, which route to take becomes clear.”

Finding impactful media and messages

Delivering on the core proposition involves getting key messages to key audiences. And perhaps no area of advocacy has seen as much change or need for flexibility as finding impactful channels across the current media landscape.

“The tools we used to have, i.e. the mainstream media, that were so important for advocacy are no longer there. Not the in-depth journalism or analysis. A story is very rarely followed unless it’s a catastrophic story. Back then, you’d be in The Dominion Post in the morning, then in the evening, and the story would advance. We don’t see that development anymore. Now, we’ve got closed Facebook pages where people are having discussions and debates and lots of new groups, but we have to work out how to join up to get attention and impact that isn’t based on drama. It’s a case of ‘we’ve never had more and never had less.'”

Janine is, however, confident we will find effective ways through, and an inventive recent IHC initiative is a perfect example.

“Pre-COVID, we were given a grant for an education project about understanding how to manage your money, particularly in supported living. We decided to do some co-design work with a group of young people and came up with the Stand Tall free budgeting game. The game has real stories about people’s lives, and the engagement has been fantastic. We’re taking it into schools and communities, its use is going up and up and new levels are now being added.

Get IHC’s Stand Tall free budgeting game.

“We learnt, through the co-design process, that the medium truly can be the message. It’s not just about the stories; it’s the way they’ve been captured—the avatars and the way the levels work. Our jaws just dropped at how this generation connects so experientially with media. It’s been amazing.

“From an advocacy perspective, it’s raised issues about access to tablets, data and data poverty issues. It’s made us rethink ways to support people. As a result, we’ve ended up recycling old tablets and computers for IHC to give to those in need.

“We would never have thought we would be involved with creating a purple-haired avatar or a game, ever. It’s well outside our technical expertise, but it’s not outside our storytelling and advocacy drive; it’s just a different vehicle.”

Keeping up forward momentum

SibLeader training for the by-siblings-for-siblings SibSupport Programme

In a similar, youth-centred and innovative vein, IHC has recently partnered with Parent to Parent to fund a new series of SibSupport NZ events, including SibLeader training and a new Sib event format, SibShopPlus, with NZDSA and Carers NZ. A fantastic way to mark the 30th Anniversary of Parent to Parent’s SibSupport NZ programme in 2025.

There will be more on this in the next part of the interview (the evening edition of The Parent to Parent Post, if you will), where we will go into greater depth on how we can raise awareness around the need, long-term impact, and popularity of SibSupport—a mutual focus.

While both our organisations are equally confident that we can find ways through current challenges, we also agree that the precise definition of priority issues and coordination around them has never been more necessary. Only then can we advocate for and deliver practical solutions. In the words of Janine:

“We outsee many other groups; we certainly outsee the politicians and the leaders. Realising that, in itself, is a huge strength. Often, we’re the memory, and we are the knowledge. We are a pivotal and integral part of ensuring the system keeps moving because if we were not here, it would go round and round in circles. Organisations like IHC and Parent to Parent don’t have enough resources to do things that aren’t vitally important—our focus has and always will be on long-term, intergenerational impact.”

Make our collective voice louder and stronger by contacting us with your top three, priority issues for advocacy in the disability sector here.