Carers speak up about what needs to change

In a series of nationwide meetings, family carers are being encouraged to talk about the pressures of supporting disabled family members and what would make a difference to them.

Carers NZ Chief Executive Laurie Hilsgen says there are more than one million family carers in New Zealand whose work is largely hidden.

“Family-whānau and aiga carers have had few opportunities to connect and share since the COVID-19 pandemic. Service disruptions and worker shortages have placed more pressure on families to step up and they have provided more care and support than usual since 2020,” she says.

“We are aware through our research that the wellbeing of family carers is the lowest Carers NZ has seen it in 25 years. More than 70 percent says they are isolated and lonely, more than two-thirds are experiencing anxiety and depression and there is a pervasive sense of hopelessness emerging in our 0800 helpline dealings with carers in the disability space.

“We aim to listen, identify regional issues, and help to resolve these – and also to provide information that ensures families are aware of available support and how to access it.”

Aside from the hui, Carers NZ will be commissioning Synergia to rerun its 2022 State of Caring research. The first State of Caring report was based on survey feedback from 1650 carers of all ages; the report made 12 recommendations for increased support, but Laurie says carers are still waiting for real progress in areas such as improved financial recognition and respite.

She is hopeful that Disability Issues Minister Penny Simmonds, who advocated for carers as National Party spokesperson before the election, will support change. “We look forward to working with her and others in the new government to ensure family carers are recognised and protected.”

Laurie says the purpose of the hui around New Zealand is to listen to family carers of all ethnicities and ages, rural and urban, to get a sense of their wellbeing, their concerns and to hear their calls to action for better support. It is also an opportunity to share information and to clear up confusion surrounding what support is available from government agencies such as Whaikaha – Ministry of Disabled People.

“In terms of Whaikaha, we think it needs to listen more to family-whānau. Whaikaha needs to provide clearer guidelines about how flexible funding can be used and also to promote this help, including options about how family carers can be paid. People aren’t always aware of what is allowed or available.”

Laurie is expecting the hui to reinforce what is already known – that carers struggle to take breaks from their caring role, they need better access to good quality and reliable services, and more attention needs to be paid to carers’ own wellbeing.

The Kōreroero – Community Conversations hui will run until the end of 2024 to encourage carers to come out and say what’s on their minds. The hui are being funded by Carers NZ and the IHC Foundation.

Laurie says initial carer gatherings have been held in Southland and Napier. “We have got a lot more to go and some will be in partnership with other organisations, including IHC.” Meetings will target communities that other consultations don’t reach.

“There are quite a few places that don’t get included in government consultations like the West Coast, South Canterbury and other rural areas.”

Between February and April, hui will be held in Northland, Waikato, Canterbury, South Canterbury and Wellington. Meetings will be held in other regions through the year. For more information about the Kōreroero – Community Conversations, email centre@carers.net.nz

Caption: The wellbeing of family carers is the lowest seen by Carers NZ in 25 years. Stock image.

Roving coach to boost riding skills

Riding for the Disabled Coach Sharon Aldersley is saddling up for her role as Roving Coach. This year she will share her expertise with 20 Riding for the Disabled groups throughout the country, thanks to a grant from the IHC Foundation.

The IHC Foundation has contributed $50,000 to fund one year of visits, and this will be matched for a second year by New Zealand Riding for the Disabled (NZRDA). By the end of two years, Sharon will have visited around 50 groups and been in contact with more than 1000 riders.

“The groups have been asking for hands-on training specific to their riders and their ride teams for a while now,” says NZRDA Chief Executive Donna Kennedy. Donna says Sharon, a trained physiotherapist and qualified NZRDA coach, has been working with the Tauranga RDA since 2009.

The national organisation has already drawn on her expertise as a national coach with some funding from Sport New Zealand to pilot the initial concept. The IHC Foundation funding will see the role fully rolled out across the country.

Sharon will tailor her coaching to what each group needs, and she will be working mainly with the organisations’ coaches, many of whom are newer coaches who are working through their NZRDA coaching qualifications.

“What they really miss is someone hands-on with them, their volunteers and their riders,” Donna says. “She will be adapting the programme to what that group needs.”

The organisation has 180 coaches, 3000 volunteers and about 3200 riders. Many of the groups serve rural and remote locations. Sharon will focus on riders with the highest and most complex needs. The majority of riders have an intellectual disability or multiple disabilities. Sharon will educate coaches so they can continue to mentor and upskill their volunteers. She will be starting her sessions with Te Aroha RDA, Central Taranaki RDA, Hāwera RDA and Whanganui RDA.

NZRDA says riding can help disabled people with physical and social skills. It can also assist with reading, counting, identifying colours, concentration and following instructions.

IHC Foundation Executive Director Larna Harding says the Foundation has received applications from several Riding for the Disabled Associations over the past few years. “Trustees have always held high regard for the programme and supported some individual groups with smaller grants, however they wanted to contribute in a way that would benefit all clubs nationally and have an ongoing impact.”

Caption: New Roving Coach for New Zealand Riding for the Disabled Sharon Aldersley will share her expertise with groups throughout the country.

Autism Clinic trials new Aotearoa-style support

Autistic children and their whānau attending Victoria University’s Autism Clinic may feel more at home with a new style of support on offer this year.

Autism Clinic Lead Dr Hannah Waddington and the clinic’s Māori and autistic advisory groups have co-designed Raupī te Raupō, a New Zealand-appropriate programme aimed at supporting children and their families to flourish. The programme is being piloted this year with a $41,000 grant from the IHC Foundation. It is thought to be the first programme in the world to be developed alongside autistic adults and indigenous peoples.

The Autism Clinic—Te Rāngai Takiwātanga was established in 2017 in partnership with the IHC Foundation and Autism New Zealand to evaluate best-practice early supports for young autistic children in New Zealand.

The clinic focuses on upskilling the adults around the child to enable better support and to improve their quality of life. The clinic also works with therapists and other health and education professionals.

One of the first programmes delivered through the clinic was the Early Start Denver Model (ESDM), developed in the United States. Around 200 children have gone through the ESDM programme at the clinic and Hannah says families have been positive about the results. “The training has made our therapists better therapists.”

She says, however, that whānau, particularly whānau Māori, have reported that ESDM is not culturally responsive or well suited to an Aotearoa New Zealand context. At the same time autistic members of the clinic’s advisory group have stressed the need for a neurodiversity-affirming programme of support, developed alongside autistic people. “At the moment there is no such programme worldwide, as all established programmes have been developed without significant input from autistic adults.”

Raupī te Raupō has been created by Hannah, colleagues Dr Jessica Tupou and Carla Wallace-Watkin from Victoria University; Lee Patrick, an autistic Research and Advocacy Advisor from Autism NZ, and with input from the two advisory groups. The Māori advisory rōpū includes, a psychologist, kōhanga reo teachers and several whānau members. The autistic advisory group includes advocates/researchers, a parent, and a part-time user of augmentative and alternative communication.

Hannah says the programme is flexible. “We want to support the child to be happy in their own unique skills.” Families have the ability to choose the areas they want to focus on. “Families really liked the ability to choose their topics.”

Four therapists, including one Māori therapist, will be trained to deliver Raupī te Raupō. The funding provided by the IHC Foundation will provide weekly sessions over nine-weeks for 22 autistic children this year. The sessions include practical sessions at home and discussion sessions over Zoom. Hannah says a donation from a private funder has since boosted the number of children to receive support to 35. The children will be drawn from the clinic’s waiting list. At present families can self-refer to the clinic but may wait up to six months for their child to be seen.

The autism clinic team will continue to evaluate the effectiveness of Raupī te Raupō through research and will adapt the programme according to feedback from participating families.

“Our criteria for this programme is that the child is under five and autistic or showing signs of autism.” To find out more about Raupī te Raupō email autism-clinic@vuw.ac.nz or phone 0220106855.

Caption: A child enjoys some learning and play at the Autism Clinic in Petone. The clinic is now offering Raupī te Raupō, a New Zealand-appropriate programme for children and whānau.

New central city gig for training café

Air New Zealand has offered a new café space at its Auckland head office to the operators of Flourish, a training café for people with intellectual disabilities.

Flourish opened at Takapuna on Auckland’s North Shore in August last year. It is an initiative of Project Employ and is supported by the IHC Foundation.

Founder Sarah Dann-Hoare says the approach came from the airline, keen to demonstrate its commitment to diversity and inclusion. “Air New Zealand proposed that we open a café in their head office at Fanshawe Street.”

She says Air New Zealand is designing the space from scratch and the café, which will service 600 employees, will be a five-day operation from 7.30am to 3pm on weekdays. The café will employ a barista and café assistants.

The roles of café assistants have been offered to three Project Employ graduates. Damian and Phoebe will work there as paid interns, and Emily, who already has a permanent contract at Flourish Café, will divide her time between the Takapuna and Fanshawe Street cafés. “Once we are set up we can open up the training side of it to people over the bridge.”

In time, trainees will share their time between the Takapuna and city cafés. Sarah says two groups of trainees have now graduated from Flourish.

The first four graduates have found work – three of them are working in other cafés and one is working in retail. Five of those who graduated in July are currently looking for work. Six new trainees started in August.

Project Employ now offers a supported employment service to its trainees. The team works with them during their six-months of training to manage their transition to paid work.

“This is a new decision based on feedback from trainees, their families and local business owners,” Sarah says. “We are evolving based on what is needed, and that is for us to offer our trainees the whole package.”

In the year since Flourish opened, Sarah says the café project has developed. They have recently begun working with training specialist ServiceIQ to do a “hospo-savvy” course covering food safety and customer service. This will have NZQA accreditation.

Flourish is also attracting attention elsewhere in the city. Sarah says the Auckland University of Technology patisserie school asked if one of their students, Danika Jones, could do a two-week placement at Flourish just to observe her and guide her in a new workplace”. In turn, Danika shared her cake-making skills. “It’s really great that the community is using us in this way.” Danika has decided to stay on at Flourish Café as a volunteer baker one day a week.

Sarah says she and her team have been surprised at the difference they have seen in the trainees’ selfconfidence.

“Not only do they now have friends, they are getting to know the customers really well too. Their lives, their worlds, are getting so much bigger.”

Caption: Daniika Jones, Auckland University of Technology patisserie student, and David Spencer, Project Employ trainee, measure the ingredients for some cake-baking.

Coffee parties come with a cool story and a great taste

Tupperware parties have disappeared from the scene in New Zealand, but a newcomer has arrived to be the next cool thing.

Coffee parties are filling the gap, offering specialty single-origin Pluma coffee.

The ethically sourced Pluma coffee, first imported to New Zealand from Mexico by The Lucy Foundation in 2017, is available to Hamilton coffee drinkers at markets and through parties and to everyone else online.

What makes the coffee even more desirable is that people with disabilities are involved at every stage of its production in Mexico and its sale in New Zealand, and they are all paid a living wage.

The Lucy Foundation, the brainchild of Dr Robbie Francis Watene and named ‘Lucy’ after her prosthetic leg, has helped to reinvigorate the production of an heirloom variety of coffee at Pluma Hidalgo, a small mountain community in the south of Oaxaca, Mexico.

“Five core disabled people are paid to hand-process the coffee for the New Zealand market,” Robbie says. They have been part of the operation from the start. “We work with 30 people consistently there.”

But the whole community is involved, and coffee crops have been improved with the use of organic fertilisers, pest control and workshops. Once the coffee harvest is over, the local team runs a café employing the same people.

“They are showing the community what disability leadership is without stating it,” Robbie says.

In New Zealand, two people are employed to run The Lucy Foundation’s Seed Training Programme, to upskill people with intellectual disabilities to work in the coffee industry. “The rest of us are volunteers.” Robbie works as a disability researcher at the Donald Beasley Institute.

“We worked on the smell of an oily rag for many, many years,” she says. “We wanted to show that you could have a whole value chain that was responsive to disability rights.”

Robbie says they now have a proven model and have shown what is possible. “We are in our second year of having sufficient funding for New Zealand operations to deliver our objectives.”

In August, six trainees graduated from the Seed Training Programme, which was granted $40,000 this year by the IHC Foundation, and six more graduates started in September. “We are giving them real hands-on work in a real business. They are paid the living wage for that work. It’s only fair and right that they are compensated fairly for that work. A lot of them haven’t been paid before.”

Robbie says they cannot force employers to think inclusively, but they can demonstrate it.

She says Pluma coffee is a highly rated premium coffee. “We made the decision that we wanted a very good product. We wanted to move away from the charity model.”

Marketing the product and helping to run the Seed Training Programme since November last year is Nicola Rosser. Nicola has a lived experience of disability and has worked in the disability sector. She also runs her own personal coaching business, My Road.

While her colleague Seth Newman works with four trainees in packaging and dispatching the coffee, Nicola works with two trainees on sales.

Nicola says she realised that they needed to do something pretty creative and pretty quickly to sell the coffee and it also had to be something that the trainees would be comfortable doing.

“We have been to schools. We have been to a car yard, some team meetings. For me, the coffee party is learning about the process, about where the coffee comes from.”

Nicola has developed an easy-to-read resource about the coffee process.

“The story and the taste test of coffee draws people in, and we have bags of coffee for people to take away.”

They have a stall at the St Andrew’s Artisan Market once a month on Saturdays and aim to do two coffee parties a month. “The difference between a market and a coffee party is that you have people coming and going and you don’t have time to tell your story.”

The Lucy Foundation has recently received a grant from the Frozen Funds Charitable Trust to allow Nicola to work one-on-one as a job coach for Seed graduates.

While the Lucy Foundation does not pay for fair trade or organics certification for its Pluma coffee, Robbie says they can guarantee its quality and ethical production because they know everyone involved in the process. “We can identify disability leadership at every step of the process.

“It’s definitely the hard path. We have not taken the easy path. What it will look like in the future will be up to the people we work with. The more coffee we sell, the less we will have to rely on charitable funding.”

Caption: The whole community at Pluma Hidalgo is involved in reviving the production of Pluma heirloom coffee with the use of organic fertilisers, pest control and workshops.

IHC Foundation targets funds to greatest need

Since it launched in 2009, the IHC Foundation Charitable Trust has paid out nearly $7.7 million for projects to improve the lives of people with intellectual disabilities.

The IHC Foundation was set up with an endowment of $18 million from IHC; 14 years later the investment portfolio is worth more than $30 million.

Using the income from its investments, trustees have funded projects across the sector as diverse as employment initiatives, connecting families to services, sport, the arts, and research into applying modern genetic techniques to the diagnosis of rare disorders. They have also devoted funds to safeguarding vulnerable people through personal advocacy support.

The Foundation focuses on projects that help people to reach their potential, build skills and health and well-being, and develop self-esteem and leadership.

Bevan Wallace, who took over as IHC Foundation Chair last year, says trustees are keen on projects that offer opportunities for young people to develop life skills. For example, they have supported the Duke of Edinburgh’s Hillary Award and Outward Bound to expand their programmes to include disabled young people.

The Foundation has also funded the Christchurch integrated dance group, Jolt, to develop its Move tutor training programme led by dancers with intellectual disabilities. And the decision to fund acting coaching for Libby Hunsdale, the young star of the movie Poppy, was in line with the trustees’ desire to encourage role models.

Extra funding was provided during the pandemic to help organisations maintain their links with the people they supported.

Bevan says the trustees were proud to support an initiative that partnered Autism New Zealand and Victoria University of Wellington in a play-based therapy programme called the Early Start Denver Model. This collaboration led to the relocation of the Wellington Autism Clinic from the university to the community at the Autism Resource Centre in Petone.

Since 2009 the Foundation has funded advocacy work by Rare Disorders NZ for a better recognition and funding of these conditions. This helped to persuade the Government last year to develop a national strategy for rare disorders.

Bevan says one of the most enjoyable evenings he had last year was attending a film premiere of a production by Te Whare Ako and Silver Noodle Soup Film and Theatre Company at Mana College in Porirua. The production was The World Premiere of our Very Cool Film. Thirty-five students participated in two inclusive filmmaking projects funded by the IHC Foundation.

“It was a red-carpet function. They had fellow students as the paparazzi taking photos. Their parents were there. Their teachers were there,” Bevan says. “The evening was more than just a celebration of the individuals who each walked the red carpet and were interviewed and photographed. The evening demonstrated true camaraderie among the students that had no doubt been forged in part by participation in the project.”

Last year the Foundation paid out $788,935 in grants. Forty-one applications were received and 29 projects were successful. These included two Auckland cafés that each received $40,000 to train young people with intellectual disabilities and support them into paid employment. A $38,000 grant went to Special Olympics New Zealand for its Young Athletes programme in Auckland.

“It gives me heart that we can allocate additional resources into the sector,” Bevan says. There has been a recent change in investment approach for the board of trustees. Last year the Foundation entrusted the management of its portfolio to three asset managers, which will relieve its trustees from having to make day-to-day investment decisions. “That has freed us up to concentrate on strategic issues and focus on grants,” Bevan says.

Another major change is the departure of Executive Director Jan Dowland, after 14 years. Jan has worked in the health and disability sector for more than 40 years in research, policy, management and consultancy roles. She is a former Chief Executive of IHC.

“We are incredibly indebted to Jan for her guidance and foresight,” Bevan says. He credits Jan with encouraging sector partnerships and coaching applicants in how to refocus their projects in order to be successful in obtaining grants.

Jan says it has been a great pleasure to see the Foundation develop from inception to now. “The generosity of IHC NZ Inc in making the bold decision to establish and endow an independent grant-making entity is to be applauded.

“We have been able to apply funds beyond the immediate ‘IHC family’ to benefit many thousands of people with intellectual disability and their whānau. Our approach to grant-making has gradually shifted as we think more strategically about where we can make the biggest impact, focusing on particular areas of neglect and areas of greatest need.”

Larna Harding is succeeding Jan as Executive Director. Larna started her career in the banking sector, joining the IHC Programmes team as a part-time administrator in 2008. Larna began providing administration support to the Foundation in 2016. She has a good understanding of the challenges faced by the disability sector and of the work of other disability organisations and government agencies.

“I have been fortunate to have spent the last seven years working closely with Jan Dowland and the IHC Foundation trustees and to have the benefit of their extensive experience of governance and the administration of charitable trusts.”

Larna has also developed an extensive network within the sector. “I consider it a privilege to work for a foundation that is committed to making a meaningful contribution to the sector and, most importantly, the lives of people with intellectual disability, their families and the people and organisations who support them.”

Caption: Mana College student Hinerangi Collins-Mohi has her moment on the red carpet with the paparazzi at the premiere of the Te Whare Ako and Silver Noodle Soup production.

Students follow another path to success

Students who might finish secondary school with no formal qualifications are now leaving with awards that recognise their skills and community connections.

At present students with intellectual disabilities are taking advantage of an alternative pathway to success by enrolling in the Duke of Edinburgh’s Hillary Award.

The award encourages young people to develop skills that help them and their communities. Students can progress through three levels – Bronze, Silver and Gold – designing their own challenges based on their interests and ambitions. Participants take part in physical challenges, volunteer in the community, work with social enterprises and gain skills that can lead to employment opportunities.

The Duke of Edinburgh’s Hillary Award celebrates its 60th anniversary in New Zealand this year and while it has always been available to disabled students, it has started developing a programme that enables more young people to use the framework more effectively.

In 2021 the IHC Foundation gave a $20,000 grant to the Duke of Edinburgh’s Hillary Award to expand this adapted programme for young people with intellectual disabilities. A second grant of $20,000 was made in 2022.

To deliver the adapted programme, the Duke of Edinburgh programme partners with schools and disability support organisations. There are around 20 schools and organisations that cater purely for intellectually disabled students throughout the country.

The Duke of Edinburgh Award Coordinator at Mana College, Cam Fraser, says, “The Duke of Edinburgh’s Hillary Award has been a game-changer in terms of offering qualifications that our disabled students might not otherwise gain. Many of our rangatahi will leave school without even NCEA level 1, which sadly will close many doors for them. The award shows to others what they are capable of, and it is something they can continue to work at as they move into their next phase of life.”

In 2021 YES Disability Resource Centre became a partner of the Duke of Edinburgh’s Hillary Award. YES Disability launched the award in Auckland for young people with disabilities, to help them on their personal journeys of self-discovery, responsibility and commitment.

In 2022 YES Disability supported seven participants through various levels of the award, with four certificates gained.

Louisa Kelly, Programme Coordinator for Manaaki Ability Trust, has run the award for the past four years. Louisa, an award-holder herself, knows the value of the programme. “These guys could really benefit from this – a programme that acknowledges and understands their thirst for life.”

Louisa advocates for learning beyond the classroom: “Academic studies have often limited student success, but the award shows that there much more to life.”

The Duke of Edinburgh’s Hillary Award Chief Executive Emma Brown says: “Through the generous support of organisations such as the IHC Foundation, more and more young people with intellectual disabilities have been able to discover their infinite potential through the award. We have been honoured to be able to work on this programme with a range of incredible organisations across Aotearoa, and we look forward to continuing to build upon it in the years to come.”

Prince Philip launched the Duke of Edinburgh’s Award scheme in 1956. Seven years later the award was launched in New Zealand. With the death of Prince Philip, Prince Edward, the present Duke of Edinburgh, is now patron of the Duke of Edinburgh’s Award and the Duke of Edinburgh’s International Award.

Caption: A team from Manaaki Ability Trust practise the hill climb and fitness training for their Bronze Adventurous Journey over the Orongorongo Track, with an overnighter at Turere Lodge. (From left) Karen Cabezas, Lacey Collier, Conor McCarthy, Louisa Kelly, Patrick Whittaker, Emma Kelleher, Lucas Whittaker Tovey, Stephen Bell-Cummings, Sheldon Valster, Michael Langley and Johnny Fidow Mose.

IHC boosts support for families in the north

IHC is expanding its Family-Whānau Liaison team in Northland and Auckland to make sure more families caring for people with intellectual disabilities can get the help they are missing out on.

IHC has employed Family Liaisons since 2018 to link families to information and services, local support groups and other families. The team has concentrated on building trust with families and relationships with local support organisations.

But as the number of referrals to the team have grown, the demands have stretched the four staff who cover Northland, Auckland, Horowhenua and Christchurch. And in each area the challenges are unique. In Whāngārei services are limited and overloaded and families struggle to trust and navigate the disability support system. The average age of those being referred is 13. In Auckland, the wide range of ethnicities requires tailored approaches for an older demographic, with an average age of 29.

Frequently the team has to navigate other issues too affecting family wellbeing – poverty, unemployment, rental costs, no transport, the rising cost of living and unforeseen traumatic events in community (COVID, storms, and violence).

A priority for the team is to connect with families who have children who have been newly diagnosed with intellectual disability. But there are many children who are undiagnosed. Often the first step for the liaison team is to support a family to get a diagnosis, which unlocks the funding that provides disability support services.

Family Liaisons hold regular ‘Wellness workshops’ to give family carers a breather.

Two new Family Liaison roles have been created this year to ease some of the pressure in the north – a second team member for Northland, based in Kaikohe, and another one for Auckland, based in the south-east.

Meanwhile, IHC has asked some specialists to measure the impact of our Family-Whānau Liaison work in changing lives. ImpactLab has been talking to IHC Family Liaison Jim Callaghan in Whāngārei about the work he does.

National Fundraising Manager Greg Millar says the cost of the assessment has been covered by IHC donors Glenn and Sonja Hawkins and it is an opportunity to examine the growth and impact of the work.

“It will be looking at the effectiveness of this one position in Whāngārei. It looks at what the potential consequences would be if that Family-Whānau Liaison wasn’t there.

Greg says, for example, it can look at the impact on parents when a child has to be kept home from school.

“What would happen if that family didn’t get a diagnosis for their child and if the child didn’t get the support from the Ministry of Education?” he says.

“These families are often very resilient, but there are critical moments when they need support. It’s about that person – Jim – being there at the right time. It’s not about walking hand in hand with that family for the rest of their lives. It’s about helping that family find their own solutions.”

Greg says ImpactLab will look at the social value of the investment in the liaison’s work. “For every dollar invested, this is the potential return.”

The Family Liaisons are funded by the IHC Foundation and by Foundation North.

Caption: A group of Whāngārei mothers and carers recently met Whāngārei MP Dr Emily Henderson to discuss the pressure on disability services in the north. (From left) Cassy George, Hope Bucknell, Tareen Ellis, Kristy Kewene, Jim Callaghan, Emily Henderson (MP for Whāngārei), Trudy Paul and Kerri Angus.

The experts were in the room

The families who make up the New Zealand Williams Syndrome Association met for their summer camp in Whanganui in January – and there was a lot to catch up on.

It was the first time the families had been able to get together in four years. They usually meet every second year, but the pandemic intervened.

It was just ‘the experts in the room’ this time. Usually, the association invites a local or overseas expert working or doing research with Williams syndrome, and this year that wasn’t possible.

“We are working with the experts in the room,” says New Zealand Williams Syndrome Association National Coordinator Christina Stilwell. “I always feel we have a lot of wisdom already.”

Christina says it has been hard trying to arrange a camp with COVID-19 in the mix. “This is our third attempt. It is four years since we last met. Because the ‘Williamses’ are so social it is actually quite a massive thing not to be able to meet.

“Because it has been such a long time, we really needed a time to catch up with each other. Our focus this time is just reconnecting and hearing each other’s stories,” she says.

Christina says most families with Williams syndrome share similar experiences. “They know the genetics; they know the health issues and they can talk about what it was like for them. It’s not an expert who can tell us this.”

Six newly diagnosed families joined in the fun. Around 120 adults and children – 27 with Williams syndrome – got together at Whanganui Collegiate School for a range of family activities, including the usual highlight – the talent quest ‘Williams Got Talent’.

Bob Hastie entertained the audience on the Collegiate’s drum kit after the talent quest organiser, music teacher Stu Green and others, assured the school of Bob’s skill on the drums – and the fact that he had already brought his own drumsticks. The drums were in good hands.

The camp was supported by the IHC Foundation.

Caption: Campers have a blast aboard the Tot Town Railway at Kowhai Park, Whanganui. Reagan Todd and Bob Hastie are in the foreground.

Jolt is out to shake expectations

The word ‘jolt’ can mean shocking someone or something into change. And change is something that drives Christchurch-based dance company Jolt.

“We need to challenge this whole deficit view of disability,” says Artistic Director Lyn Cotton. “We need to see people as individuals with their own unique way of moving and thinking.”

Jolt is an inclusive dance company made up of people with intellectual disabilities. It was founded by Lyn in 2001.

“I’d been relief teaching at a school for people with learning disabilities in London. I’m a trained secondary English and drama teacher with no training or background in teaching people with high needs, but I fell in love with the work. There was a dance class some of the senior students would go to, run by a guy called Wolfgang Stange.”

Wolfgang Stange is the director of the Amici Dance Theatre Company, a physically integrated dance company in the UK that includes performers with physical and intellectual disabilities.

“I had no background in dance either, but I sat in this dance class and within five minutes I knew. This is what I want to do. There was so much freedom and humanity and joy.”

Lyn spent two years with Stange’s performance company before returning to New Zealand to found Jolt.

Jolt has more than 160 dancers aged between five and 60-plus and presents a weekly Zoom session on IHC Media to an audience across the country.

In 2013, Lyn and Jolt colleague Renée Ryan started up the Move programme, in which people with intellectual disabilities learn to develop choreography and lesson plans and teach weekly classes for people with complex disabilities, as well as lead workshops in mainstream schools and rest homes.

“I knew we couldn’t call ourselves a properly inclusive dance company if there were no pathways for our dancers to be teachers, to be leaders. If we’re going to have change, we need these people to be leaders not followers.”

The training given in the Move programme is based on the individual, with the dancers being at the heart of it, and there’s a strong community focus. Through the workshops in mainstream schools and rest homes, the programme brings together diverse communities with the aim of changing the nature of relationships.

“It’s about gifting the mainstream community with the joy and freedom of engagement with the disability community. To strip away the competitiveness, the desire to fit in, the peer pressure, that ability to just be yourself.

 “I had this big vision that the mainstream school kids would go away from these sessions saying, ‘Oh wow, people with Down syndrome can do anything! But the reality is after five minutes in the class, the kids forget about disability altogether. One of the teachers in our first session remarked: ‘It creates a sense of belonging for everybody’ and it does. It flips everything on its head. It makes the kids think a bit differently.”

The IHC Foundation contributed $17,800 towards the Move tutor and community programme.

Project Employ has a new strategy to reach employers

Sarah Dann-Hoare is out to convince employers that young disabled people make great employees.

 She has set up a training café to give young people a start in the workforce. Flourish Café opened in Takapuna in August – an initiative by Project Employ with support from the IHC Foundation.

 Sarah is one of the founders of Project Employ, an organisation committed to finding jobs for young people. In 2017 she won an AMP Dare to Dream award and used the money to make 10 short films featuring interviews with disabled young people working in New Zealand workplaces and with their families and employers to show that employing young disabled people does work.

 Sarah used to be a special education teacher at Wairau Valley Special School on Auckland’s North Shore. She worked with a transition class of 17- to 21-year-olds on a work-ready programme.

 “We created a range of work experience opportunities. It was all about the work ethic and employability skills.”

She says the programme was getting to be well known in the area. But she found it was getting harder to reach out to businesses. There was resistance to taking on disabled young people and concerns from employers about health and safety.

 So Sarah started researching training cafés operating in the United States and the United Kingdom and in August set up her own training café. Flourish Café opened with five trainees, who each work four shifts of four hours a week. 

 There are two trainees on each shift working with a café manager, a barista and job coaches. Sarah is one of the job coaches. Trainees rotate through the various tasks, including running the dishwasher, operating the till, clearing tables, warming food, doing coffee runs and helping prepare catering orders.

 She says even though the trainees are working in a café, most of the skills – timekeeping, teamwork and customer service – are transferable.

 “One of the things we focus on more than anything is anxiety. As much as you practise, there are some things you can’t prepare them for, such as if something goes wrong or a customer leaves without ordering and the trainee thinks it’s something that they have done and gets upset.”

 The training lasts six months, although Sarah says there is no set finish date. In December, Sarah will be working on interview skills with the trainees. “During January they will start leaving us and starting with their new employers.”

 Project Employ partners with employment advisory service PolyEmp and Autism New Zealand to find jobs for the trainees.

 Project Employ takes trainees who live in Auckland, are aged between 18 and 28, identify as having an intellectual disability and want to gain future paid employment.

 There is growing demand, Sarah says, and schools are showing interest. Applications have already closed for the January 2023 intake of trainees. Sarah is planning to increase the number of trainees to eight.

 Caption: The Flourish Café team, from left, Achinna Medis (café manager); Zahira Champion (barista); Hannah Sykes (job coach); Terence Harpur (Project Employ board member); Quinn Simpson (trainee); Sarah Dann-Hoare (Project Employ director/job coach); Ariel Knight (trainee); Billy Lupton (trainee); Alexandrea Heels (job coach) and Jonathan Squirrell (trainee).

Tom puts out the call for a café stop

Tom Russell has just finished a day’s work at the Te Tuhi Training Café in Pakuranga, working at the till, taking orders and baking a batch of almond friands.

He loves it. He loves it so much he wants other people with disabilities to come to the café and ask him or the trainers about whether it’s something they would like to do “because it’s a very good opportunity”.

Two years ago, Tom lost his job at Altus Enterprises in Auckland when the lockdowns did away with the need to refurbish Air New Zealand’s headphones. He had worked there for five years.

It turned out the pandemic provided the opportunity for Pakuranga’s contemporary art gallery Te Tuhi, Rescare Homes Trust and the University of Auckland’s School of Psychology to do something they had all been wanting to do – start a training café for people with intellectual disabilities.

Te Tuhi Executive Director Hiraani Himona says training cafés work well overseas but have been slow to take off in New Zealand. Te Tuhi launched at the worst possible time with repeated closures and low customer traffic to the gallery. But she is positive about the project. “It’s been a joy,” she says. “It’s hard, but this is what an art gallery should be doing. It’s filled our foyer space with activity and life and joy.”

She thinks many Aucklanders might see Pakuranga as being too far to go for coffee but, like Tom, she would love to see more of them in the café. The café is not making money and relying on grants and other funding to pay the staff – a cook and a barista – and the trainees. Te Tuhi received a recent grant from the IHC Foundation.

“I would love some more customers. We are 20 minutes by car [from central Auckland] and there is loads of parking.” The café is open six days a week from 9am to 2pm.

Each partner plays a specific role. Rescare selects and oversees the trainees and covers pastoral care. Te Tuhi runs the café and employs the trainers and trainees. The university’s School of Psychology staff have developed the training manual and troubleshoot where necessary, working out how to adapt training if someone is having trouble.

Dr Katrina Phillips, senior lecturer in the School of Psychology, says the project, Nga Mātauranga ōu Mahi, provides benefits all round – for the trainees, the community and for the university students involved in developing and studying the project.

“We used the idea or term ako – that idea of learning from each other. It’s the idea that everyone has something to give,” Katrina says.

Tom was one of the first trainees when the café opened in July 2020. He’s been working there ever since. He does some baking but prefers the customer-facing roles.

“I am more confident, absolutely. I like the customers to feel good about what we do.”

Today was the second time he had made almond friands. “It took a while to remember how to do it again,” Tom says.

He’s comfortable on the till. “I am really good at my counting and maths.”

His skills have led to other work too. Tom is employed at the Better Way container café at Drury on Fridays.

He says he is thinking about long-term goals now – perhaps trying some other kind of employment and a future with his girlfriend. “I really want to be living independently with my partner. That is my long-term plan. She is my blessing and my heart.”

Photo caption: Rachel Martin and Falefatu Carreras are building their skills at Te Tuhi. Rachel is aiming to be a barista.

Whitney tracks the missing pieces

Scientist Dr Whitney Whitford is skilled at finding missing pieces of DNA.

Her complicated version of a jigsaw puzzle involves things called copy number variants (CNVs). They are responsible for the duplications and deletions of genes or parts of genes that cause neurodevelopmental disorders.

As a PhD student at the University of Auckland Whitney developed a filtering and annotation system – called a ‘bioinformatic pipeline’ – to find and track CNVs in individuals with neurodevelopmental conditions.

Her doctoral research resulted in diagnoses for two families and life-saving treatment for a seven-year-old boy.

Whitney says one of the families participating in her research had two brothers, both with the same disorder. They had inherited genetic variants from both parents that prevented vitamin B being transported into their brain cells. The vitamin B deficiency had caused lesions in part of their brains causing seizures. The older brother died, but the younger brother survived after treatment-

She says the cause was very difficult to find, but the treatment was straightforward, using biotin and thiamine supplements. “It’s just understanding the genetic basis of what caused this condition. Our research was translated to the clinic and contributed to saving the remaining brother’s life.”

In 2019, funded through an IHC Foundation post-doctoral fellowship, Whitney took her skills and her computer pipeline to join the team at the university’s School of Biological Sciences on their project to find the causes of rare genetic conditions. Whitney’s role was to liaise with the families involved in the study and their clinicians, extracting DNA, and processing and analysing data.

Whitney says being able to deliver a diagnosis for 10 families was a great result. “Obviously we would always like more. We would like to be able to give every family an answer,” she says.

“We are as good as the best in the world.” But she also says, “We are not here for the glory. I know that our research can have such a profound effect on people’s lives.”

This project provided a platform for Whitney to obtain a three-year postdoctoral fellowship from the Neurological Foundation of New Zealand to continue her research career and she is now investigating the genetic basis of Charcot-Marie-Tooth disease in New Zealand. This is a group of disorders that cause nerve damage, resulting in smaller, weaker muscles and sometimes loss of sensation and voluntary movement. In New Zealand, the underlying genetic cause has only been identified in 40 percent of cases.

Whitney will be using genetic sequencing to identify DNA variations that cause the disorder. She says while she may not be actively researching neurodevelopmental conditions for the next three years, she will still be part of the team. We are still connected.”

Photo caption: Julia Koblitz on Unsplash.

Dr Whitney Whitford.

New technology closer to causes of genetic disorders

Eight families have diagnoses for rare genetic disorders thanks to the latest work by a team of researchers at the University of Auckland.

The DNA of 25 people with undiagnosed intellectual disability from 19 families was studied using advanced genome sequencing and analytical methods. The project aimed to uncover the genetic causes of neurodevelopmental conditions and improve the health of these individuals. The study was funded by the IHC Foundation.

Genome sequencing is a laboratory method of studying the genetic makeup of cells. The human genome contains a person’s complete set of genetic instructions.

As well as finding answers for eight families (12 individuals), the team believes it has broken new ground in a further four cases by identifying potentially novel genes or translocations involved in developmental delay. A translocation happens when a chromosome breaks, and the fragmented pieces reattach to different chromosomes.

No genetic diagnosis was found for seven of the 19 families, but analysis will continue in the hope of finding an answer for them.

The researchers from the University of Auckland’s School of Biological Sciences: Dr Jessie Jacobsen, Professor Russell Snell, Associate Professor Klaus Lehnert and Dr Whitney Whitford and PhD student Chris Samson, use whole genome sequencing to find a variety of genetic variations, including those that are complex – such as changes in the DNA that involve combinations of deletions, duplications, or translocations of genetic material. The team worked with colleagues at Harvard Medical School and Massachusetts General Hospital in the United States to sequence and analyse the complex cases.

Whitney, who participated in the project on a post-doctoral fellowship funded by the IHC Foundation, developed a ‘bioinformatic pipeline’ (software to process the DNA sequences) to detect large deletions and duplications of DNA. She worked alongside Chris to validate and confirm the cases with deletions, duplications or translocations of genetic material.

Everyone inherits genetic variations that cause no difficulties. But when they do cause problems, the results can be devastating for the individuals and for the families affected.

Jessie is thrilled that the study provides a potential answer for more than 50 percent of the families. “The research funded by the Foundation has been a huge success. Compared to much of the international literature, it’s a lovely statistic.”

Jessie says in two or three cases they discovered a new role being played by structural variants, where they don’t disrupt the gene itself but instead disrupt the non-coding regions nearby that interact with the key gene involved in the condition.

“Importantly, these results are contributing to the translation of this technology for routine use. Currently, we are applying to funding bodies to support the trial of this sequencing technology in the clinic, together with clinicians from Auckland District Health Board and Diagnostic Genetics at Auckland City Hospital.”

In 2015 the IHC Foundation funded the team’s pilot research project using genome sequencing to find the causes of rare, undiagnosed neurodevelopmental disorders. This early study found the genes and mutations responsible for rare conditions in 14 children. Following the success of the pilot, the Foundation funded the study in 2019 that has looked at even more complex variations.

New sequencing technology makes it possible to rapidly study large amounts of DNA at once. This has dramatically cut the cost of genetic detective work.

In 2001, it took years and cost $US95 million to sequence the whole human genome. Now it takes only days to sequence a person’s DNA and by 2021 the cost had been slashed to $US450, according to the US National Human Genome Research Institute. [PH1] 

“Now you can sequence the genome by chopping it up into small bits and sequencing them at the same time,” Jessie says. In New Zealand dollars the cost of sequencing the whole human genome is now around $1500 and the cheaper alternative of sequencing the human exome is $450. The exome is the protein-coding region that, while representing less than 2 percent of the genome, contains around 85 percent of known disease-related variants.

Jessie says cost-effective sequencing makes it possible to make the move from the research laboratories into clinics as part of normal diagnostic testing. She says finding genetic answers for families has been a real privilege and hopes this will tailor long-term management for those families involved.

Photo caption: Researchers from the University of Auckland’s School of Biological Sciences (from left) Dr Jessie Jacobsen, Dr Whitney Whitford, Associate Professor Klaus Lehnert and Professor Russell Snell.

Young adventurers dare to dream

On a summer day in January, Caitlin Fleming built a large sandcastle on the beach in the remote Te Kainga Bay in Queen Charlotte Sound. She sat in it, looked out across the sea and told a story – “it’s about a beautiful Queen Elizabeth”.

 For Caitlin and the other young people taking part in the Outward Bound Youth Horizons course, this was a chance to create and to dream. They spent five days at Anakiwa in Queen Charlotte Sound pushing boundaries and making friends. On their second day they learned to sail a cutter and landed in Te Kainga Bay to spend the night sleeping under the stars.

 The IHC Foundation provided $30,000 in funding so the 11 students and school leavers with an intellectual or developmental disability could attend the course.

 Without any distractions – phones and laptops had to be left behind – they focused on the challenges of being close to nature. They took part in adventure tramping, camping, sea journeys, rock climbing and a high ropes challenge.

 Working with three Outward Bound instructors and two support workers, the group learned to work as a team to solve problems, to make decisions and to support each other in the various challenges.

 Caitlin, from Christchurch, is the second person in her family to do an Outward Bound course and, at age 20, she is younger than her dad Lindsay was, at 21. Caitlin is proud that she is carrying on the family tradition. Her younger sister Ashleigh plans to go to Outward Bound later this year.

 But Caitlin didn’t get any inside tips from her dad. “It’s about your discovery and your self-discovery.

It’s your story, not someone else’s story,” he says. “I am really proud of what she has achieved.”

 Nathan Carter, from Darfield in Canterbury, is a champion runner in mainstream cross-country and road race events. This summer he found new skills in the high ropes challenge. Going to Outward Bound was part of his Duke of Edinburgh Gold Award, which he plans to complete this year.

 Nathan, 19, left Darfield High School last year and is working hard towards independence and employment. He got his full driver’s licence when he was 18 and drives his own car. He is doing work experience at the Rolleston Salvation Army store and stacking shelves at a New World supermarket.

On top of that he is living away from home one day a week to get ready to go flatting.

 For a young autistic man who finds trying new things a challenge, Nathan has been testing his limits. Following Outward Bound he went on a sea adventure with the Spirit of Adventure in February.

 “The overwhelming thing about that was that there were 30 young people. That many people can be a bit of a challenge for him,” says his mum, Bridget Carter. “He is definitely a lot more confident being on his own,” she says. “He is autistic and proud. He is very happy in his own skin.”

 Nathan doesn’t find communicating easy but came back from Outward Bound very clear about one thing. “I want to do it again please.”

Photo caption: Caitlin Fleming and Samuel Pethig tackle the low ropes.

This is a success story worth sharing

Project SEARCH in Canterbury is finding great jobs for disabled school leavers. The challenge now is to share that success with many more young people.

“Interns are out there working in good jobs and above minimum wage and proving what they can do,” says Project SEARCH tutor Linda Leishman, who is guiding her fourth set of interns this year.

Project SEARCH is hosted by the Canterbury District Health Board (CDHB). Interns spend a year at Burwood Hospital learning about the work environment in a classroom setting, while doing real work at the same time throughout the hospital.

CCS Disability Action is driving the project and Riccarton High School is the managing school. The IHC Foundation contributed $128,250 to pay for the programme coordinator.

Of the seven interns who graduated in 2021, four have been offered contracts. Three graduates are now employed full time by CDHB. Carl Te Tone Huia is working in the Christchurch Hospital Supplies Department, Wiremu Manahi-Holm is working as an orderly, and James Duthie is an administration officer in Clinical Records. Jacob Levington is working part-time as a grocery assistant at PAK’nSAVE Northlands and can move to full time as soon as he is ready.

Project SEARCH is now trialling a new role of Job Developer to encourage more employers to take on graduates and to help reduce the gap between interns finishing the programme and getting a job. Courtney Murray has been employed to get the word out.

“It’s my job to help them find jobs for themselves and for them to keep the power in their hands,” Courtney says. “When I am interracting with our graduates, I try to keep them in the lead.”

She is proud of the success rate for the 2021 interns. “They are all working meaningful hours in mainstream positions on secure contracts, and they are all being paid minimum wage or higher for their time and service,” she says.

“Most of our success for the 2021 class is through CDHB, with graduates being hired into the departments where they completed their third rotation during their Project SEARCH year.”

For the first six months of the year, Courtney works with the graduates from the previous intake, and then her focus shifts to the present intake. She wants to build connections with employers and is keen to have conversations with any employer wanting to know more about Project SEARCH.

Eight interns graduated in 2019 and 2020, and eight more are enrolled in the 2022 intake. The numbers are small because the programme struggles to get students/interns with Ongoing Resourcing Scheme (ORS) funding from the small population base in Canterbury.

“We are only able to take applications from ORS-funded young people at school, so we can capture that ORS funding. At any given time, there might be only 40–50 ORS-funded students. It’s a finite pool that we are drawing from,” Linda says. “There are lots of young people who come out of school who don’t have ORS funding who would benefit from Project SEARCH.”

Project SEARCH is open to students between the ages of 18 and 21 who are in their last year of school and qualify for ORS funding.

For more information, please contact Courtney at Courtney.Murray@cdhb.health.nz

Photo caption: (Back row from left) Laura Robertson, Wiremu Manahi-Holm, Carl Te Tone Huia, James Duthie, (front row from left) Gabriel Beyrer, Jacob Levington and Bella Lammers.

Supporters see what the fun is all about

Sailability Tauranga sponsors were recently given a front row view of its sailing programme for disabled sailors.

Supporters, including IHC Foundation Trustee Shelley Payne, were taken out on launches to observe the sailors up close and then had a chance to meet them over lunch. 

There were three sailing sessions on the day and Shelley says there was a real mix of disability service providers involved, including IHC company IDEA Services. 

“There is such a variety of people coming – quite disabled people coming in wheelchairs and being lifted into a boat, with support people; people sailing on their own without support people.”

Up to 145 sailors with disabilities are now involved and Sailability Tauranga has increased its fleet to cope with the demand. It now has seven Hansa sailing dinghies and one cutter and can offer sailing opportunities to between 30 and 40 people each sailing day. Among participants are 10 schools which bring teenagers from special education units. The programme is fully booked with a waiting list. 

Sailability Tauranga offers its programme in Tauranga and across the Western Bay of Plenty and is seeing increasing numbers of sailors developing the skills and confidence to sail single-handed or showing an intention to learn to race. More than 90 percent of participants have intellectual disabilities and 56 volunteers are committed to giving people with disabilities the opportunity to sail. 

The IHC Foundation recently approved a $10,000 grant towards Sailability Tauranga operations this year.

Lily takes the lead

Actor Lily Harper, riding the wave of success in her first leading role, did it all again in a Wellington season of Up Down Girl at Circa Theatre.  

Up Down Girl is about a young woman with Down syndrome getting ready to leave home for the first time and her mother’s hilarious perspective on bringing her up.  

Its first season at Palmerston North’s Globe Theatre last year sold out. “I felt great about that and I wanted to show the world that people with Down syndrome can do the same things that they can,” Lily says.  

Lily, from Palmerston North, has a passion  for performance and she believes it’s possible to change attitudes – “When you do something that you believe in, when you do a show and want to show people what you are capable of”.  

“This is a message for everyone who was born different. Parents will be interested in this play because it’s a play about parents and a child.”

She works hard to live in the character of 19-year-old Mattie, who likes to escape into a world of fantasy and superheroes rather than concentrate on packing her bags. Lily and stage mum Trudy Pearson dominate the show. They have developed a strong relationship, and each has been nominated for Best Female Actor in the Regional Theatre Awards. Lily has also been nominated for Emerging Performer.  

Producer/Director Nathan Mudge says Lily immerses herself in her character – to the extent of calling Trudy ‘Mum’ on and off stage – and this provides depth and understanding to the performance. “The work that Lily does on stage is absolutely stunning because she will listen to songs that remind her of her character or watch DVDs that remind her of her character.”  

Up Down Girl was originally written as Up Down Boy by British writer Sue Shields. Nathan adapted the play for a New Zealand context and interlaced it with songs, dances and drama skits.  

Up Down Girl played at Circa Theatre during the May school holidays and sold out the entire season. The performance was supported by the IHC Foundation.   

Photo caption: Lily Harper as superhero Mattie in the leading role of Up Down Girl.

Read the Dominion Post review.

Grants look forward to future partnerships

Two long-established organisations that are going out of their way to include young people with intellectual disabilities have attracted partnership funding from the IHC Foundation.

Recent grants to Outward Bound and the Duke of Edinburgh’s Hillary Award acknowledge their strong values of inclusion and their ability to respond to people with intellectual disabilities, says IHC Foundation Executive Director Jan Dowland.

She says both programmes fit with the foundation’s strategy to put greater emphasis on the development of people as leaders.

Outward Bound received $30,000 for its Youth Horizons programme, a new adapted course for young people with intellectual disabilities and neurodevelopmental conditions. This paid for scholarships for 11 high-school students aged between 15 and 20 years to attend the 2021 Outward Bound Horizons course in Marlborough Sounds.

“In January, 11 enthusiastic secondary school students, with an intellectual or developmental disability, stepped foot on the shores of Anakiwa and came together to form Blake Watch,” says Karla Paotonu, Funding Development Manager.

“Thanks to the generous grant from the IHC Foundation, students were able to experience tramping, camping, sea journeys, water challenges, rock climbing and high ropes over five incredible days. Working in a supportive environment, accompanied by three Outward Bound instructors and two support workers, these students developed teamwork, problem-solving, communication and decision-making skills. They were also able to explore and build confidence in their abilities.”

Participant Harry Baylis, 16, enjoyed the challenge. “I had a great time doing things I hadn’t done before and being away without my Mum. I worked out how to walk across a log over water. I would have never done this before.”

The Duke of Edinburgh’s Hillary Award received $20,000 to expand its programme to young people from 14 to 24 years with intellectual disabilities in Auckland. This builds on a recent pilot programme in Wellington and the launch of the ‘Dukies Awards’.

The Dukies is the Special Olympics Duke of Edinburgh club and in November last year it celebrated the success of 27 individuals who had completed sections of the Duke of Edinburgh award. The special guest speaker was a 2020 winner of the gold award, Hamish Gilbert from Havelock North.

Karen Ross, National Director of the Duke of Edinburgh’s Hillary Award, says the goals are to create a community where people with intellectual disabilities can flourish and for the award to be part of a journey that any young New Zealander can do. “We are equipping all rangatahi in New Zealand, irrespective of ability.”

She says the grant will provide the opportunity to establish a base in Auckland, working with schools, community service providers and agencies, and hopes to establish a ‘Dukies’ style delivery for young people with intellectual disabilities. They are hoping to be up and running in May.

Photo caption: The Youth Horizons Blake Watch explores the Marlborough Sounds.

Observers back the benefits of music therapy

A Victoria University researcher has used a team of observers to evaluate the impact of music therapy on children with autism in her latest research project.

Findings from the study back the view held by many music therapists and families that music therapy provides a range of benefits for children with autism spectrum conditions.

Six years ago, with funding from the IHC Foundation, Associate Professor Daphne Rickson set out to find a way to provide evidence about the benefits of music therapy because standard research methods, such as randomised controlled trials, didn’t suit the way music therapists work.

Music therapists employ flexible approaches that allow them to respond to the individual needs of their participants ‘in the moment’ and outcomes are not easy to measure for funders of services who want to see evidence-based practice.

Daphne designed a research project that used a ‘mixed-methods’ approach. The data gathered was submitted to ‘evaluators’ for appraisal.

The idea of using observers came from her earlier research which found that people who witness music therapy can develop understanding and appreciation for music therapy.

Her latest project involved 10 music therapists each working for up to one year with a child with autism who had not had music therapy before. At the end of that year they produced their case material (descriptions, photographs, videos), for autism experts to evaluate.   

“The evaluators suggested that music therapy supported children to manage cognitive tasks, such as listening, attending, waiting, initiating, taking turns, and negotiating or following instructions,” Daphne says, in a paper in the latest New Zealand Journal of Music Therapy.

“They also believed it helped them to manage and express their emotions in safer ways, with several of the evaluators proposing that children became less anxious in this setting. Music seemed to support sensory regulation, both stimulating and calming children’s senses, because they had more control over their environment, making it feel safer for them.”

“This piece of work is looking at what these experts saw,” Daphne says. “It’s a matter of them seeing with their own eyes.

“I was truly surprised how passionate they were; how positive they were and how moved they were. One person with a lived experience of autism said, ‘I wish my mother had known about these things’.”

Daphne’s research has already attracted a book contract.