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.

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.

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.

Job hunt starts for first Project Search interns

The moment of truth is getting closer for eight young Canterbury people with learning disabilities, who are learning skills designed to land them jobs.

The interns are part of Project SEARCH, hosted by Canterbury District Health Board. They are spending the year at Burwood Hospital learning about the work environment in a classroom setting, while doing real work at the same time throughout the hospital.

The interns have just started their third ‘rotation’. Each rotation gives them an opportunity to try something new. The work can include setting up clinics at the start of the day, delivering linen, assisting orderlies, helping out in food services and helping the maintenance and engineering teams. As the end of the year gets closer, approaches are now being made to employers to give these young people a job.

The Canterbury DHB scheme is the first in Australasia, although there are more than 600 programmes operating mainly in the United States and Europe. Project SEARCH is open to students between the ages of 18 and 21, who are in their last year of school and qualify for Ongoing Resourcing Scheme (ORS) funding. Selection is now under way for interns to participate in 2020.

The IHC Foundation is contributing $128,250 towards Project Search, which is paying for the programme coordinator. CCS Disability Action is driving the project and Riccarton High School is the managing school.

The Project SEARCH goals are to find each intern at least 16 hours’ employment a week for a year after completing the programme, to encourage other employers to run their own Project SEARCH programmes and to break down barriers for young people with disabilities who want to enter the workforce.

“At the Canterbury DHB, we believe our workforce should reflect the communities we serve – and one in four New Zealanders have disabilities,” says Michael Frampton, Chief People Officer for the DHB. “We’re committed to building and supporting a diverse workforce that accepts people for who they are and celebrates their differences.”

See the interview with Michael in the latest Education Gazette: Tukutuku Kōrero:

Relaxed Chamber Music concerts are back

Chamber Music New Zealand's award-winning series of relaxed and accessible concerts kick off next week in Napier.

Designed especially for diverse audiences, The Relaxed Concert Series then continues in New Plymouth, Christchurch and Auckland and runs from 5 September to 4 October.

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

Audiences are encouraged to learn songs before the concerts and move around and express themselves during performances.

The concerts are sponsored by the IHC Foundation.

New autism clinic provides access to the latest therapies

Pre-schoolers with autism now have access to the latest research and therapies through a new clinic at Victoria University of Wellington. 

The Autism Clinic - Te Rāngai Takiwātanga has been established in partnership with the IHC Foundation and Autism New Zealand to evaluate best-practice early interventions for young children with autism in New Zealand. 

The clinic is run by Dr Hannah Waddington in the School of Education and works with children under the age of five and all those involved in their lives – families and whānau, caregivers and teachers – on strategies to help learning and skill development. The clinic also works with therapists and other health professionals. 

The clinic aims to bridge the gap between research into early intervention therapies, such as the Early Start Denver Model (ESDM), and the practical use of this research. The clinic offers parent coaching playgroups, one-on-one therapy and workshops. 

Dr Larah van der Meer, who is Research and Advocacy Advisor for Autism New Zealand, says autism can now be reliably diagnosed by two years of age, and early detection of autism is critical as it provides access to early intervention, improving a child’s development and quality of life, and decreasing family stress.

Read more about the Autism Clinic

Detecting autism accurate for under-twos