Empowering Through Dance: Jolt's Move Training Program

Jolt’s Move program helps people become dance teachers and also leaders who promote inclusion and empowerment. With three parts - Move Beginner Tutor Training, Move Connect, and Move Outreach - trainees are ready for any teaching or leadership role.

As they become dance instructors and leaders, they can break down barriers, challenge stereotypes, and make our world more inclusive. The Move program doesn't just help trainees but also touches the lives of people with different abilities. Making a world where everyone can dance and thrive, no matter who they are.

The IHC Foundation is proud to support this inspirational programme and its talented teachers.

Gene team finds the answer to a 21-year-old puzzle

The Sterne family has spent much of the past 21 years wondering whatever happened to Luke. Now, thanks to genetic researchers, they have the answer.

Nicola Sterne was 33 when Luke was born in 2000, the Sterne’s second child. Nicola says she recalls feeling there was something wrong.

“He was induced. It was a horrific time.” She says an explanation from a doctor at National Women’s didn’t help. “She said, ‘He has an even chromosome translocation and we don’t know how that is going to manifest itself’.

“So, I went home with this baby and literally went through six weeks of hell.” Luke wasn’t able to feed. “He wasn’t strong enough to swallow the formula. He was shaking because he was so malnourished,” Nicola says.

Luke was sent to Starship Hospital where he was given the immediate help he needed. But as for what was actually wrong, no one knew.

Then fast-forward to 2016, and Luke was recruited into a study being carried out by Minds for Minds genetic researchers at the University of Auckland’s School of Biological Sciences and Centre for Brain Research to find the genes and genetic variations responsible for rare conditions.

“It was so important for my other children to know,” Nicola says. And two years later they did, receiving a call from their clinical geneticist. “She said, well, it’s good news. He has a syndrome – DYRK1A, a gene involved in brain development. Changes in the DRYK1A gene have been linked to intellectual disabilities, microcephaly, speech and language impairment, seizures and autism.

“It was a bit of sad day because you know there is actually something wrong,” Nicola says. But it also provided some answers and certainty for the family.

Despite not knowing what had caused Luke’s disability, Nicola and husband Richard had a third child, Kyle. “I definitely felt I was taking a risk having another child.” Her third child Kyle was not affected.

What they now know is that the genetic change in the DYRK1A gene was not inherited in Luke’s case. “It’s called a first-generation mutation. It’s random,” Nicola says.

Nicola says Luke is limited in what he can do. “He can’t shower himself. He is allowed to go to a day programme, but only for two days. He loves the Sky Tower, he loves walking – he can walk 10 kilometres easily. He had a fantastic twenty-first.”

University of Auckland researcher Dr Jessie Jacobsen leads the research project alongside Associate Professor Klaus Lehnert and Professor Russell Snell, and PhD student Chris Samson. They worked with colleagues at Massachusetts General Hospital and Harvard Medical School in Boston to resolve the complexities of the specific type of genetic rearrangement (a balanced rearrangement) observed in Luke’s DNA.

She says a balanced chromosomal rearrangement is a bit like rearranged chapters in books. “A balanced rearrangement is when you have whole chapters missing from one book (chromosome), but they reappear in another book (chromosome). As we don’t lose many of the words, just rearrange them, we often call this a balanced structural variant.”

Her research has been funded by the IHC Foundation. In the pilot project, from 2016–2018, the team conducted research with 20 families and was able to find the genes and mutations responsible for rare conditions in 14 children.

A second project, now nearly completed, had three goals. First, to provide answers for families to help manage their condition. Second, the results from these families could significantly contribute to evidence to support the use of this technology into mainstream clinical use. Third, the gathering and cataloguing of naturally occurring genetic variation in the population will allow for a more efficient approach to identify those genes that cause rare disorders.

“We are very grateful to the IHC Foundation for their help to help these families,” Jessie says.

Photo caption: The Sterne family is relieved to have some answers (from left) Patricia Alston (Luke’s grandma), Nicola, Kyle, Luke, Sophie, and Richard holding Kais.

Go to the theatre without leaving home

Just pull the curtains and your lounge becomes a stage. Tear an old white sheet into moonbeams. Then find a soft, fluffy jumper to be The Badger.

Now you are ready to hear, see, touch, taste and smell ‘The Badger Story’. This is new digital multi-sensory theatre delivered online by the Glass Ceiling Arts Collective to people with profound and multiple learning disabilities.

It’s a COVID-inspired, in-home theatre experience for families who are asked to supply their own props from the kitchen cupboard, supermarket or two-dollar shop. It was developed with funding from the IHC Foundation.

The process of gathering the props is part of the whole experience. The Badger Story comes with instructions about how to get the best experience for participants as they use all their senses and involve all the family.

“For me, going out into the forest and finding leaves and playing with grass is an exciting thing in itself. Even my son, who has autism, it was an exciting process for him,” says author Charlotte Nightingale. Charlotte, a teacher and actor, is Co-Founder and Artistic Director of the Glass Ceiling Arts Collective.

The crew ventured into the trees near Charlotte’s home with a binaural microphone specially imported from Canada to record 3-D stereo audio for more lifelike sounds, such as a bee buzzing around your head.

The Badger Story is an excerpt from Charlotte Nightingale’s play, ‘The Incredible and Glorious World According to The Fitzroys’, which won Best Performance (Ensemble) at Auckland Fringe last year. It is the story of a teenager with autism who found the outside world tricky, so he created an incredible world at home with his family. The Badger narrative is about navigating friendship. It is performed by an inclusive cast – of people and live action, animated characters and puppets. The giant badger was made by Tusk Puppets in Christchurch and Deaf actor Courtney Nairn is the screen goddess.

Co-founder and General Manager of Glass Ceiling Michael Eaglesome says The Badger Story was born out of COVID. He says those with high health needs were even more vulnerable during lockdown. Even at the best of times, going out to the theatre is beyond the reach of many people with multiple disabilities. The Badger Story brings theatre into their world.

He sees the theatre experience as evolving as families get involved. “If any of your IHC members/whanau are particularly keen to embrace The Badger Story and give detailed feedback, we'd be really interested to hear from them.”

Disabled people are dying too young

People with intellectual disabilities in New Zealand are dying too young and we don’t know why.

This is the key finding of new research, ‘Counting for Something’, which is the second report to come out this year critical of a lack of information about the deaths of these disabled New Zealanders.

The report says life expectancy for New Zealanders with intellectual disabilities is between 18 and 23 years less than the general population.

In her report, disability researcher Sharon Brandford describes a piecemeal and uncoordinated approach by the Ministry of Health and various mortality review bodies and suggests they work together to avoid premature deaths.

Results of an investigation by the Chief Ombudsman, released in July, identified significant gaps in the Ministry of Health’s collection and use of information about the deaths of people with intellectual disabilities in full-time residential care.

He found that the Ministry of Health had not adequately dealt with deaths reported to it by disability service providers, despite knowing through its own research that people with intellectual disabilities were high users of health services but still had poor health.

Ms Brandford, who has over 35 years’ experience in the intellectual disability support sector, backed his call for New Zealand to develop an independent national death review system.

She says she felt energised by the Chief Ombudsman’s investigation. Her purpose in preparing her report was to increase visibility and response to early deaths, and not just for those in full-time care. Her work has been funded by the IHC Foundation.

“We’ve known about the poor health outcomes for years now. The agencies responsible for recording and investigating deaths must be supported to identify ways to improve life expectancy.

“Bereaved families and friends want these premature deaths to count for something.” 

She says overseas research shows that people with intellectual disabilities too often die from conditions that can be treated and would not normally be fatal, or from conditions that are not recognised and poorly treated.  

“New Zealanders with disabilities want and expect health services to treat them right when they are unwell. Like everyone else, they want to get on with living good and long lives.”

She believes more progress will be made if New Zealand health and disability sectors created a culture of openness rather than blame.

Ms Brandford organised a workshop with relevant agencies, including the Ministry of Health, to discuss her findings in mid-November and explore how to make people with intellectual disabilities more visible in health records and public health data; to better inform families, friends and carers of their options for investigation of a worrying death; and to support the Ministry of Health to lead a coordinated response to improve life expectancy with urgency.

The IHC Foundation says it is pleased to contribute to this important debate – “in the hope that we will finally see concerted action to address the unacceptable fact that people with intellectual disability are dying younger than other New Zealanders”.

IHC Director of Advocacy Trish Grant says the Government now has an opportunity to make this group of New Zealanders count for something after decades of “death by indifference”.

“IHC calls on the new Minister for Health, Andrew Little, to ensure health ‘justice’. This will require his officials in the Ministry of Health to lead the collaborative work required to stop people with intellectual disability dying too early. These are avoidable deaths in many cases,” she says.

Dr Garth Bennie, Chief Executive of the New Zealand Disability Support Network says this is an extremely timely piece of research highlighting the lack of progress in an area that should be receiving the utmost urgency. “A comprehensive and accessible report, ‘Counting for Something’, provides a clear pathway for substantial change that leaves no doubt about who should be doing what from this point forward.”

Caption: A black granite memorial wall, on a hill in rural Waikato, bears the names of 457 people, some of the deceased residents of the former Tokanui Psychiatric Hospital. The memorial was set up in 2016 to remember those patients with mental illness and intellectual disabilities who were buried between 1914 and 1964. Engraved are the lines, “For those we knew, and those unknown, they shall not be forgotten - in memory of the people buried in this field”.

Libby’s courage takes her through to the finals

Courageous young Whanganui actor Libby Hunsdale has reached the finals of this year’s Attitude Awards. The star of the new feature film Poppy has been named one of the finalists in the Attitude Youth Courage Award.

The award is for a young person with a disability whose courage and determination demonstrates the power of the human spirit, and the quest of young people with disabilities to lead full lives.

Libby, 18, has Down syndrome and was born with a learning disability. She attends Whanganui Girls’ College where she has a long and proud list of awards won for her achievements and leadership. Libby is one of very few ORS-funded students to have gained NCEA Levels 1 and 2, including literacy and numeracy. She is now planning to try for Level 3 to gain access to university.

Libby has overcome great grief and loss. Her mother developed brain cancer and died in 2015, only a year after Libby’s stepfather died of a heart attack. Libby’s maternal grandparents became her carers on her mother’s death and her grandfather, Ormie Andrews, shared his love of theatre and acting. Her grandfather died in 2018 and she feels his loss deeply. His example gave her the courage to audition for Poppy and she won the lead role over a large field of candidates.

Poppy producer Robin Laing says Libby showed incredible courage in taking on the role. “We know Libby embodies the spirit of this award. Her courage has been shown in her overcoming personal loss and throwing herself into auditioning for, and successfully gaining, the role of Poppy. She not only brought her talent and courage to the set every day, she came back from the lockdown hiatus to the final week of the shoot more prepared and confident than ever,” Robin says.

The Attitude Awards are a nationally televised event celebrating the achievements and successes of New Zealanders living with disabilities. Libby was nominated by IHC.

The 2020 black-tie event will be held on 2 December in Auckland, to recognise people from the sector, including employers, employees and entrepreneurs, as well as, athletes, young people, and game-changers in the sector.

Poppy, produced by Robin Laing and Alex Cole-Baker, is the debut feature for Raumati writer-director Linda Niccol and is based on her short story Poppy. The film is scheduled for release towards the end of the year.

Photograph: Ness Patea.

Gallery gives wall space to lockdown stories

Palmerston North’s Te Manawa gallery is sharing artists’ work that emerged during their Covid-19 isolation bubbles.

Common … Pause is a digitally projected exhibition created as a response to the lockdown. The exhibition opened with blank walls and artists were invited to add their work. It evolved as other artists joined in.

The exhibition plays with ideas of inclusion, connectivity and isolation, which came from New Zealanders sharing a common experience as their ordinary lives were placed on pause.

NOA Open Studio, an arts group based at Palmerston North’s Te Manawa, was the catalyst for the project and its participants were the first to add their lockdown experiences. The stories are shared through images, movies, words and sound.

NOA Open Studio spokeswoman Mirjam De Oude likened the exhibition to a science experiment, because their stories were the unknown and exciting element of the project.

Te Manawa People and Partnerships leader Janet Ellery said Common … Pause was a project born out of unprecedented times and would reflect some discomfort and extremes of the experience.

“It is a bit scary doing something when you don’t know exactly what it will look like, but that is also exciting. We hope people will come and pause, reflect and find some common ground.”

Common… Pause will be on at Te Manawa gallery until Friday 28 August. It is the latest event in the ‘We are all artists’ project funded by the IHC Foundation.

Read more about the exhibition.

Real world experiences move to a virtual world

Organisations offering activities for young people with disabilities switched gears when COVID-19 forced the cancellation of their usual programmes. Real world experiences moved to a virtual world.

Recreate NZ General Manager Brent Jenkin says its activities have transferred to the digital platforms Zoom, You Tube, Facebook and Mailchimp while New Zealand moves through the alert levels. The organisation is now providing on-line meetups, sessions and workshops in Auckland, Waikato, Bay of Plenty and Canterbury.

“This is helping our young people to keep in touch with their friends and keep their ‘out-of-home’ social connections, engage with their Recreate NZ community, and participate in meaningful activities while giving parents much needed time-out/respite.

“Recreate is offering 12–15, one-hour sessions a week to groups averaging 20–25 participants. Our weekly national Zoom get together gets 75-plus attendees,” he says. “Large groups meet and then break out into smaller groups in different zoom break-out rooms to engage in activities.”

The digital activities have included information sessions about the virus and hygiene, tuition on how to use Zoom along with sessions on all kinds of skills and subjects ranging from cooking, careers and exercise, to creating Star Wars characters for the ‘May the 4th’ celebration.

Recreate NZ’s programmes are cancelled until the end of Term 2, and this will be reviewed once New Zealand is down to Alert Level 1.

Skillwise, another organisation supported by the IHC Foundation, which provides services for 220 intellectually disabled adults, has maintained connections on Facebook.

“Social media has enabled us to connect and engage with the people we support in ways we haven’t done before, says Skillwise Fundraising Coordinator Fiona Dunkley. “We have set up a closed Facebook page which is working really well with a lot of activity from people sharing what they have been doing and generally keeping in touch, face-to-face via their screens.”

Aside from regular calls from staff, the organisation has created weekly visual timetables for online activities for the people they support, which include some live streaming and a range of fun and educational videos.

“Technology has been our friend during the last few weeks, Fiona says. “We moved our organisation to cloud-based systems over the last few years that have enabled all staff to work easily from home.”

Photo caption: Recreate NZ staff get ready for their first mass Zoom meeting, which attracted more than 80 people.

Young athlete Rohan dressed up for the challenge

Seven-year-old Rohan Hubbard knew she wasn’t at the sports centre just to play around. She was there in her red team t-shirt to learn sports skills.

Rohan, from Karori, was one of 12 children taking part in a Special Olympics Young Athletes sport and play programme, which was held at the ASB Sports Centre in Wellington in December.

Mum Bernadette Hubbard says as soon as Rohan saw her produce the red t-shirt each week, she knew what it was for and tried very hard to meet the new challenges of the programme. “I noticed with Rohan that she really wanted to do the activities well,” she says.

“Rohan tries 500 times harder than the average neurotypical child to do things. She is so determined to succeed and to perfect things that she needs to do. She practises things methodically so that she can do them for herself.”

Bernadette says Rohan has been involved in early intervention programmes since she was nine months old. “The Special Olympics Young Athletes programme is a type of early intervention. I know what a massive difference early intervention makes for a child’s physical development as well as social development.”

Special Olympics New Zealand trialled the six-week programme for children between the ages of four and seven with intellectual disabilities. The idea was to introduce basic sport skills, such as such as running, kicking, throwing, balancing and jumping – and in a setting that involved families and carers too.

If the results follow overseas research, these children will develop motor skills twice as fast as children who don’t take part.

David Hibberd, from Special Olympics New Zealand, says all the young athletes developed their skills from week to week. “It was great to see the interaction from the parents and guardians as well.”

He says an evaluation of the programme is under way, including planning how to make the programme available across the country. “We are talking about running something in Auckland in the very near future. We are looking forward to moving the programme forward into other areas in New Zealand.”

The IHC Foundation contributed $8700 towards the Young Athletes pilot project.

'Poppy' lead role goes to young Whanganui student

Libby Hunsdale is spending her summer preparing for her role in new feature film Poppy.

Young Whanganui actor Libby Hunsdale is to play a role close to her heart in the feature film Poppy, being made on the Kāpiti Coast north of Wellington.

Poppy is a story about falling in love, learning to drive and entering the local car burnout competition, and Libby is getting primed for her role with some hands-on experience at Whanganui’s Midtown Motors.

Midtown Motors owners Raj Patel and Janine Chalk were happy to let Libby shadow their apprentice Jon Morrison before she heads south for filming. Libby’s grandfather, well-known local stock-car driver Ormie Andrews, had a long association with the garage. He was a member of the Wanganui Warriors Superstock Team.

Libby, 18, a student at Whanganui Girls’ College, was cast for the leading role of Poppy after a nationwide search. She lives with her grandmother Barbara Andrews, who saw an article in a Sunday newspaper saying the film makers were looking for a girl with Down syndrome who was ready to tackle anything. Libby impressed writer/director Linda Niccol (Second- Hand Wedding) with her vivacious personality and ability to deliver a performance. “Libby is a real find. She embodies the spirit of Poppy. She’s a true performer,” Linda says.

Poppy is the story of a young woman with Down syndrome who wants the same opportunities as others her age. She takes matters into her own hands when her over-protective brother holds her back from achieving her ambition to become a motor mechanic.

Libby says she’s over the moon to be cast and she already feels a connection with the character. “What I love about Poppy is that she’s ambitious and wants a career. I do too. Poppy doesn’t care about what people think of her and the fact she has Down syndrome. I really relate to Poppy. We could be sisters.”

Barbara says Libby has studied drama and dance and has been in shows. “But the camera is something different,” she says.

The IHC Foundation has contributed $25,000 to provide acting coaching for Libby. This will involve performance-related workshops, rehearsals with other key actors and one-on-one coaching with Miranda Harcourt. Miranda has worked as an acting coach all over the world, with stars including Nicole Kidman, Reese Witherspoon​ and Kiwi actor and comedian Rhys Darby. 

Miranda Harcourt says Poppy is a story firmly centred in the world of self-determination. “She is a wonderful character leading a unique and wonderful story.”

The Poppy Pictures production is being supported by the New Zealand Film Commission, with funding from the 125 Fund created to celebrate the anniversary of women’s suffrage. It is also supported by NZ on Air alongside private supporters and sponsors. TVNZ will screen the film in New Zealand.

The story of Poppy includes learning to drive and working in a garage, and Libby will be preparing for her role over summer. This activity, as well as drama coaching will be supported by a grant from the IHC Foundation.

The Poppy Pictures production is being funded by The New Zealand Film Commission and New Zealand on Air alongside private supporters and sponsors. TVNZ will screen the film in New Zealand.

Welcome sign rolled out in Auckland for chamber quartet

Four concerts in four weeks from one end of the country might not look that ‘relaxed’. But the musicians and audiences taking part in Chamber Music New Zealand’s relaxed and accessible concerts had a ball.

The 2019 Relaxed Concert Series ran from 5 September to 4 October and visited Napier, New Plymouth, Christchurch and Auckland. They combine performance with workshops and everyone is encouraged to get involved – to sing, dance and move to the music.

The concerts were led this year by community musician Julian Raphael with Wellington-based improvising chamber quartet The Noveltones, featuring Blair Latham (bass clarinet), Tristan Carter (violin), Jasmine Lovell-Smith (soprano saxophone) and Tom Callwood (double bass).

In Auckland for the last concert of the series, the musicians worked with adults at the Ranfurly Centre in Epsom. It was a return visit to Ranfurly and the concert was keenly anticipated by concert-goers, who had made a welcome sign for the musicians.