Workshops build awareness of Fragile X

Fragile X school workshops send a positive message that people with the condition can achieve if they are given the right support and opportunities.

Since 2015 Fragile X New Zealand has received three grants from the IHC Foundation to run its ‘No Longer Fragile’ workshops in schools. 

The workshops – usually held five or six times a year nationwide – are run in schools where there are children affected by Fragile X syndrome.  The workshops are delivered free and their aim is to build inclusive communities.

Fragile X Executive Director Andrea Lee says despite Fragile X being the leading inherited cause of intellectual disability internationally, and easily diagnosed by a blood test, the genetic condition is not well known in New Zealand.

Andrea says her 13-year-old son was diagnosed at the age of three. “It was life-changing for us because we suddenly had access to information that explained many things we had struggled to understand about Andre. And it made a big difference to know a little of how he might be experiencing the world, about his sensory sensitivities and high anxiety.”

She says the condition has been widely studied and a lot is known about the neurobiology of the condition. “We understand what is happening in the brain and the impact that has on learning.” This information is shared through one-hour workshops in pre-schools, primary schools and high schools. 

“Instead of everyone having to research every time a child with Fragile X comes along, we go out to them and we individualise the information to the child, working together with the whanau and school community.” 

The request for a workshop usually comes from the family and after preliminary discussions with the family an approach is then made to the school. The aim is to build a partnership between the family and the school. “Hopefully, it supports and deepens the relationship the family already has with the school.”

Andrea says it’s about letting people see the world through the eyes of someone with Fragile X and to say “these are the things that will help the child or young person to be successful in your community”. 

“One of our aims is to show people they are not dealing with children who are choosing to behave badly.” Andrea says if a child is highly anxious they are unable to process what is being said.  However if the child can be supported to self-regulate then they can learn.

“What we are trying to say to people is when a child or an adult is in that state, that is compromising how they function. We are keen to send a positive message that people with Fragile X are really capable people, given the right support and opportunities to learn and develop skills.”

There is a high demand for the ‘No Longer Fragile’ workshops, but they are limited by cost and by the availability of those who are trained to deliver them. Andrea says there are already four lined up for 2018 with people who were on waiting lists from last year. 

Her son, Andre, now in Year 7 at an inclusive mainstream school, has made big progress. “We have been able to share with the school how he learns – what we call the Fragile X learning style. For example, we know that he learns visually and simultaneously, not sequentially. It has changed the way he has been taught to read.” She says students like Andre learn better if they can see the whole picture, rather than the learning being broken down into parts.  We know that visual applications work very well for helping students to learn to spell for example and he is very motivated by the use of technology.

Now you see me – young artists explore identity

The artists’ faces were everywhere – in photographs, in painted portraits and in amazing combinations of the two. And in front of the portraits were the artists themselves proudly exhibiting their work to the public – joyful and confident.

Between May and September 2017, 11 young people from IDEA Services in Henderson, Auckland, spent time learning about digital photography and then applying that knowledge to develop self-portraits. At the end of the course they held a six-week public exhibition at Zeal West – an organisation committed to developing creativity in young people.

The IHC Foundation contributed nearly $12,000 towards the 20-week course in photography and art. The project explored identity, focusing on what people and places mean to the participants.

In the first 10 weeks, the students were shown how to hold and shoot using digital SLR cameras, they learned about composition and lighting, and how to edit. A drone was used to capture aerial landscape shots of places they identified with. In the second part of the course, the images were manipulated to capture the personalities behind the images.

 Zeal West Programme Coordinator Naomi Reese says the idea is to nurture self-expression and to create a sense of belonging. The students – all between the ages of 20 and 26 – were all at different levels, but “their level of engagement is incredible and their level of patience with each other. For a number of them this would have been the first time they had handled a proper camera.” 

Photography Tutor Anieszka Banks says the students were focused and committed. Over the 20 weeks each of the students made remarkable progress in confidence but also in ability – from not being able to hold a camera or paint brush to being completely confident and using both unassisted. 

“The students loved working with the drone, which was dubbed the ‘flying camera’. “We integrated it into the lessons in a few different ways. I had a stack of coloured cards and I got the class to hide them throughout the park. Then we led JP (John Puleitu, the manager of Zeal West) on a treasure-hunt style adventure through the park with the drone. We watched the footage back on the projector to see him find each thing that we had hidden. 

“We also used the drone to take photographs of us as a group in different patterns and formations. This way the students got to see the link between how things on the ground level and how they looked from a bird’s-eye view.”

The youth organisation Zeal Education Trust has been working with young people in New Zealand for the past 18 years. It says it is committed to positively influencing young people through creativity. Zeal also engages with up to 500,000 young people online through its Live for Tomorrow programme, tackling issues such as mental health, identity, bullying, self-harm, alcohol and suicide.

The IHC Foundation has been supporting the Zeal Education Trust since 2014 and has funded barista training, music-making, photography and art initiatives in Auckland, Hamilton and Wellington. IHC Foundation Chair Sir Roderick Deane says Zeal makes a point of including young people with intellectual disabilities in its programmes. “This goes a long way to create a real sense of belonging and confidence.”

 [Caption: Mitchell Richards, 24, with his exhibition of self-portraits at Zeal West in Henderson.]

The other mothers knew what was going on

Doctors told Denise Bray that her 18-month-old daughter was vomiting because she had a virus. But it was the mothers of other children with Williams syndrome who told her what was really going on. 

Denise says it was the family’s first time at a New Zealand Williams Syndrome Association family camp. “My daughter was 18 months. She was just on solids and she was vomiting all the time and about three mothers said: ‘She’ll have Celiac Disease – get her tested’.”

So Denise did get her tested and the doctors confirmed it. “They said she had severe allergies and she was probably allergic to several things, but she definitely had Celiac Disease.”

No one understands what it’s like to raise a child with an intellectual disability better than other families struggling with the same issues. Intellectual disabilities, such as William syndrome, aren’t always well understood at the local medical centre and it’s often other parents who can throw the lifebelt at the right time.

“Because it’s quite a rare condition, the doctors in New Zealand often don’t know much in terms of day-to-day support. You get it from other parents,” Denise says. “Sometimes other parents can give you that invaluable advice as to what they have done.”

The IHC Foundation makes it a priority to fund organisations that support families. Top of its list of five priorities for funding are projects that build family networks and support access to information.

The Foundation has contributed funds towards the New Zealand Williams Syndrome Association’s biennial conference since 2012. The conference alternates between the South Island and North Island to make it as easy as possible for families to attend. As many 30 families come to the camps to participate in educational and support forums and to hear visiting experts provide updates on the latest research, treatment and support strategies. The association has between 80 and 90 members.

“Conferences for parents/caregivers and people with disabilities can make a huge impact through the sharing of information, resources, strategies and experiences,” says IHC Foundation Chair Sir Roderick Deane.

The association’s most recent conference, in Rotorua last year, featured Dr Melanie Porter, a Senior Clinical Neuropsychologist and Director of Director Centre for Research in Atypical Neurodevelopment at Macquarie University in Sydney. She is a specialist in Williams syndrome, Down syndrome and autism – and her research now includes New Zealanders as well.

To its previous conference, in 2015, the association invited American Developmental Psychologist and author Dr Karen Levine. She camped on site and spoke to families about how to coach children out of the phobias and anxieties they often experience – how to deal with the noise of thunder or even the lawnmower.

New Zealand Williams Syndrome Association Camp is a lifeline

Rett New Zealand brings in the experts

Rett New Zealand conferences make it possible for families to hear directly from international experts about  the latest developments in understanding Rett syndrome.

Since 2012 the IHC Foundation has contributed funds towards the Rett New Zealand Trust’s biennial conferences, which regularly feature American Rett education specialist Susan Norwell along with local medical specialists. 

Rett syndrome is a neurodevelopmental disorder that almost exclusively affects girls and has a profound effect on their ability to communicate. Susan Norwell has introduced New Zealand families to eye-gaze technology that allows them to communicate with their eyes.

Rett New Zealand conferences allow families to network with other families and professionals. They offer individual consultations between families and local and international experts, lectures on genetics, discussion groups and practical sessions on caring for someone with Rett syndrome. 

For the 2018 conference in Auckland in May, Susan Norwell was invited to talk to parents and teachers about supporting girls to learn to read and write through eye-pointing technology. 

Rett New Zealand Trust Chair Dugald MacBrayne says some girls with Rett syndrome can speak, but most cannot. “The ultimate cruelty is that some speak and then lose the ability to do so. Susan Norwell is a specialist in communicating with non-verbal children.” He says the eye-gaze technology has opened new horizons for the girls and their families.

Auckland Paediatrician Dr Rosie Marks, who works at Starship Hospital’s Developmental Paediatrics Service, also made time for individual appointments during the conference.

Dugald says about 40 families attend the conferences. Some bring their daughters, but not all the girls can travel. “It’s a huge networking opportunity for parents. It also allows people from Southland, Northland, all over the country, to meet people with the same problems and who think the same way.”

Dugald says it’s costly for parents to travel to Auckland, but the Rett New Zealand conference itself is free, thanks to support from the IHC Foundation, the Deane Endowment Trust and other sponsors.

Study to explore benefits of music therapy for ASD

Dr Daphne Rickson from Victoria University’s New Zealand School of Music

A Victoria University of Wellington academic has been awarded nearly $100,000 in funding to research the effectiveness of music therapy for children with Autism Spectrum Disorder (ASD).

The New Zealand IHC Foundation funded-project, led by Dr Daphne Rickson from Victoria’s New Zealand School of Music, explores the potential of music therapy for 10 New Zealand children with ASD.

Dr Rickson says there is a need in New Zealand and internationally for studies that provide hard evidence about the impact music therapy can have on the development of a child’s interpersonal communication skills. These skills include attention, imitation, initiation, turn-taking and/or emotional expression.

“We know that music therapy is beneficial for children with ASD, but the nature of the therapy makes it difficult to provide evidence of this. By working alongside music therapists, we will develop a strong set of data that includes written reports and video, which can be further analysed to determine how effective music therapy can be,” says Dr Rickson.

“The most important part of this research is that we want more children with autism to receive music therapy. This research project will provide more evidence to argue the case for its place in the treatment of children with ASD.”

Read more about the project on Victoria University’s website here.

The IHC Foundation has also funded the NZSM’s ACTIVE MUSIC research project which you can read about here.

Gene researchers seek causes of rare disorders

Families may be closer to discovering the genetic causes of intellectual disabilities affecting their children thanks to a University of Auckland research project being funded by the IHC Foundation.

A research team, led by Professor Russell Snell, Dr Jessie Jacobsen and Associate Professor Klaus Lehnert, of the School of Biological Sciences, is using the latest genome sequencing technology to look for a genetic diagnosis for children with undiagnosed, rare neurodevelopment disorders.

Twenty families from throughout New Zealand are participating in the two-year pilot study to discover the genes responsible for disorders that can’t be explained through standard tests. The IHC Foundation is meeting the $147,000 cost of collecting and reading the DNA.

“Sequencing is reading the DNA that is in all of our cells,” Russell says. “The great advantage of the new method is that you are reading all the pieces of DNA in one step. The magic is taking all of these small pieces and comparing them to a standard.”

A genome is the complete set of genetic instructions or genes contained in each cell. In humans, each genome contains all of the information needed to allow us to grow and develop.

“We get the DNA from either blood samples or saliva samples. We collect DNA from the parents, where available, along with the affected individuals,” he says.

The participants with intellectual disabilities are mainly children.

Only the individuals will have Whole Genome Screening, which looks at the complete set of DNA at a single time. “In the parents we sequence all the exome – the protein-coding regions. It’s approximately half the cost of sequencing the genome,” Russell says.

The exome in humans is about 1 percent of the total genome, but is thought to harbour about 85 percent of DNA variations that cause disease.

“The rationale behind that is that we expect to see variations in affected individuals. Some of the variations might be in the protein coding, but some of them might exist elsewhere.

“If we had more money we would sequence the whole genome in all individuals, but this group of cases will tell us how successful this more limited approach is,” he says. “For the current work the funding has come from the IHC Foundation, which is extremely generous. We are always looking for more funding as we have vastly more requests than we can support.”

The direct cost of sequencing is now as low as an overnight stay in hospital, but it’s not yet part of a routine approach to treatment. Russell says the aim is to build a case for making genome screening part of routine clinical practice for undiagnosed conditions and conditions likely to be inherited.

“Traditional gene-screening approaches, where you only select one gene at a time for analysis, are appropriate only for well-known conditions.

“The majority of conditions are rare and cannot be identified through this slow and expensive process. This leaves the patients and their families without a way to assess the risk of future pregnancies and can lead them on lengthy and costly diagnostic odysseys,”he says.

“Fundamentally, understanding the genetic basis of a condition is a very important first step towards the identification or development of a treatment.”

He says that a diagnosis can often help focus treatments.

Being able to put a name to a condition and to be able to describe causation can give families comfort and remove the worry that some environmental factor has caused a condition.

“Some families are interested in having more children, and finding a cause can mean they can make choices about having more children.

“We are working hand in hand with clinical geneticists across the country and we are building the evidence for the routine application of these technologies. Our hope is that as soon as a child presents with a developmental condition, the first port of call is that they will have their DNA sequenced if they choose.

“All the variations that we discover in our research lab are re-checked by the formal diagnostics laboratory and the results, if the patient or parents would like them back, are delivered through the formal genetics service,” Russell says.

The team believes that the new, cost-efficient genome-wide sequencing can dramatically increase the rate of genetic diagnoses in rare conditions.

In the course of this research project, the team is expecting to find the gene mutations responsible for neuro-developmental disorders in more than 10 of the 20 participating families. Russell says they can make that prediction based on past experience.

“There are some conditions where intervening early with a therapy can prevent longer-term damage.” Already the team has been able to identify two cases where early intervention has proved to be beneficial. “If the conditions were recognised from birth, the benefit of treatment could have been even greater,” he says.

“As a group we are quite good at identifying causal DNA variants now, and at least as efficient as the best groups in the world. This is because we are a research group. We spend more time on each case than a diagnostic laboratory can currently. However, with the experience being gained through our work and internationally, the process is becoming increasingly efficient.”

Williams Syndrome Association camp is a lifeline

IHC Web Specialist Mao Vaireka had a special reason to attend a two-day camp over Easter for people who have Williams Syndrome.

Mao’s daughter Tatiana, now aged 12, was diagnosed with this rare, non-hereditary genetic condition when she was a year old. The syndrome affects only one in 10,000 births. This compares with Down Syndrome which, according to United States statistics, affects one in 690 births.

Mao and his partner Kylie, with Tatiana and her young sister Lania aged five have been attending the camps, held every two years at different parts of the country, since Tatiana was three years old.

The camps are sponsored by the New Zealand Williams Syndrome Association and some funding for this year’s event was donated by the IHC Foundation.

This year Mao and his family travelled to Brightwater, near Nelson, to join 30 other families for what Mao describes as a lifeline of support.

“We get to share our experiences about Tatiana’s schooling and life stages with families who have younger children. We also learn a lot from the families who have teenagers with the syndrome, which is a great help for Tatiana,” says Mao.

“It’s also helpful to share our experience with families of younger children who are newly diagnosed, so they can see that they are not alone,” says Mao.

Mao says that children with Williams Syndrome can have developmental delays in walking and talking and a calcium allergy that affects their nutrition intake. In more severe cases there can be heart problems.

At the camp there was plenty of expert advice to hand. Noted Williams Syndrome expert Dr Antonio Chasouris, author of Williams Syndrome, A Handbook for Parents and Professionals, who is based in Invercargill, presented his latest research.

“It was really great for us all that he made himself so accessible to families over the two days,” says Mao.

An occupational therapist helped parents identify characteristics around developmental delays and explained therapies to improve coordination. There was a transition session for teenagers moving into adult life, a music workshop and shared meals.

Siblings weren’t forgotten, with a confidence-building course for them, and volleyball and outdoor activities for all.

“If it wasn’t for the camp, we wouldn’t know there were other families in New Zealand to share our experiences with. It would be overwhelming.

“Getting together like this helps Tatiana and our family understand her condition and learn how to cope. There’s endless information about Williams Syndrome on the web, but there’s nothing like spending time with families in the same boat as ourselves,” says Mao.

For further information: www.williams-syndrome.org.nz

New play-based therapy explored for Kiwi kids

Victoria University researchers are offering a new play-based autism therapy to help the development of pre-school children.

For the first time in New Zealand, the team will offer a therapy developed in the United States, called the Early Start Denver Model (ESDM). IHC Foundation has contributed $42,600 towards the cost.

Project leader Dr Larah van der Meer and PhD researcher Hannah Waddington say the international clinical trials of the ESDM model of family-based preschool therapy are showing very positive results for children – including improved intelligence scores, greater improvement in cognitive and language abilities and fewer autistic symptoms. In some cases it led to a change in diagnosis.

Researchers (from left) Hannah Waddington, Larah van der Meer and Jessica Tupou.

The Victoria University team will include four trained therapists to work with the children and their families to develop language and communication, social interaction, imitation, cognition and daily living skills. Initially the project will recruit eight to 10 children and their parents.

One of the team members will be PhD student Jessica Tupou, who will not only offer the ESDM therapy but conduct research into its impact. She will also be working with a number of early childhood education providers in the Hutt Valley and training teachers in the therapy.

The team is now looking for Wellington region families to participate in the early-intervention therapy and associated research. See the brochure.

For more information see http://www.victoria.ac.nz/news/victorious/2017/autumn-2017/fun-and-games

Jolt Dance – Move Tutor Training Scheme

The Move Tutor Training Scheme has been running for four years and the IHC Foundation has been delighted to support this innovative programme since it began.

Move provides a pathway for people with disabilities to become leaders in dance disability. The programme supports trainees to confidently plan and lead a 45 minute class by
challenging them to make independent decisions and be creative.

Recently Move has extended the classes to include sessions with mainstream teachers, dancers, aides and coordinators.

Integrating the sessions into the Move scheme allowed the trainees to work alongside mainstream teachers, dancers, aides and coordinators. In turn the participants from the mainstream were able to engage and learn in a diverse environment.

The integration of Move into the mainstream community challenges perspectives about disability and has promoted the growth of dance in the disability community.

Open studio brings museum to life

A group of artists has taken up residence in the foyer of Te Manawa museum in Palmerston North to share their creativity with each other and with visitors and tourists alike.

They are part of NOA Open Studio, which opened towards the end of 2016 with funding from the IHC Foundation. It is one way in which the museum, art gallery and science centre is bringing the life of the community inside the building.

Chief Executive Andy Lowe says Te Manawa has a concept called ‘museum without boundaries’. “It’s about mixing it up and breaking down the barriers. We want to bring people who are often invisible and make them visible in our environment,” he says.

He says the IHC Foundation funding had “put wings on an idea” by enabling Te Manawa to really explore what it means to be inclusive.

NOA Arts Facilitator Aroha Lowe, his wife, has had a long involvement with outsider artists, with artists who have disabilities, with the elderly and with children. She says NOA is about sharing and inhabiting public space to create art together.

“The right of citizenship means that we can move through public spaces. We are part of things that go on. Te Manawa is funded by the ratepayer and anyone can come here, but some people have been under-represented,” she says.

“I was raised by my father who was disabled. He was seriously injured in a traffic accident when I was three – hit by a vehicle when he was walking across a crossing in Auckland. My mother had died of cancer just months before this. So, my father, post-coma, had to learn to talk and walk again.

“He was my hero, in that everyday, just-my-Dad kind of way, and I learned a great deal from him about bravery as he struggled through what was largely difficult terrain for a disabled father. We used to visit galleries, museums, shops etc before there were wheelchairs and other supports available,” she says.

“He would love Te Manawa. There are chairs just inside the door – wheelchairs available. The floor is level, the spaces accessible; the toilets too, of course. Staff are friendly and welcoming of those of us with disabilities.”

Artist and DJ Anaru Davis is a regular at NOA Open Studio, which operates from the foyer of Te Manawa museum in Palmerston North

Aroha says NOA stands for Notes Of Art. Noa is also a Māori word that can mean open, safe or free from restriction. “In Te Ao Māori, through powhiri, karanga, karakia and whaikorero, we use ritual to establish safety, to allow for each other’s difference and to find common ground,” she says.

The sessions are mixed ability and for all ages. “It’s about whoever is here on the day. People come in with clear ideas and it might be a very solitary experience. Other people come in and see who’s here and it might be a very organic thing,” she says. Also welcome are tourists, kids with their grandmas or caregivers, known and emerging artists, and visitors waiting for exhibition queues to clear.

Sailability sets sights on new jetty

When the north-westerly winds are blowing, the sailors from Sailability Wellington head for the shelter of Porirua harbour. No one wants to miss a day’s sailing.

Sailability Wellington, an organisation that makes it possible for people with disabilities to sail, now operates from three bases in Wellington – Seaview Marina, Evans Bay Yacht & Motor Boat Club and, for the past year, from the float plane jetty on Porirua harbour.

The organisation’s 62 volunteers support more than 200 sailors, but there are more than 80 on the waiting list. To meet demand, particularly in the Porirua-Kapiti region, Club Captain Don Manning is working hard to boost its capacity even further. He is fundraising to build a new jetty at Porirua, next to the Titahi Bay Boating Club, because the existing jetty can be used only at high tide. A new jetty will cost $150,000 and give them access to deeper water and longer sailing hours – and a calmer sailing option when the winds are too high for comfort on Wellington harbour. The jetty will also be available to local sailors.

“We would love to see it in for February next year because there is a Sea Scout jamboree being held on Porirua harbour.”

Don says that for the past 15 years his organisation has made it possible for sailors with disabilities to leave their limitations on shore. Once they get on board the emphasis is on what they can do – helming a yacht solo or taking part in a regatta. In an average year, each participant will get around 30 days of sailing. A number of sailors who volunteer with Sailability Wellington also have disabilities.

“Some people are scared of the water and we help them overcome it,” he says.

“When they sail solo for the first time, we have their parents and caregivers on the wharf and generally they cry. The mothers and grandmothers and fathers, who have all got tears in their eyes, are looking at us saying, ‘I am amazed that you would trust our son or daughter or granddaughter with an expensive boat’.”

The yachts are all modified for extra stability, with lead in the keel, but it makes them much heavier to handle than other yachts. In 2015 the IHC Foundation contributed $25,000 to purchase a sea crane and sling, buy a container to store boats, and cover engineering and other costs associated with the jetty project. In 2016 the Foundation granted another $25,000 to increase the number of volunteers and Club Captain hours.

Don says the Sailability Wellington Trust is bigger than the average yacht club. It owns 23 modified yachts, two safety boats, three shipping containers for storage, VHF radios and 100 life jackets – all funded by subscriptions, donations and fundraising.

IHC Foundation Chair Sir Roderick Deane says the Foundation is delighted to support the excellent work done by Sailability to enable people with intellectual disabilities to experience and enjoy sailing.

YouthLaw report challenges the barriers

YouthLaw released its report Challenging the Barriers: Ensuring Access to Education for Children with Special Educational Needs in September 2016. The report was funded by the IHC Foundation and Prader-Willi Association and highlights issues identified as barriers that children with disabilities face in mainstream education in New Zealand.

“If we want young people to be engaged members of our communities, we need to provide them with a meaningful education,” says YouthLaw General Manager Vanushi Walters. In line with the findings of the report YouthLaw calls for Government to make comprehensive changes to the structure, funding and accountability of the special education sector.

“Greater funding and support is required for children, young people and the schools who work hard to support them.”

The full report is available at: http://www.youthlaw.co.nz/resources/

Interact 2015 – disability festival attracts crowds

In 2015, the IHC Foundation provided funding to Interacting Theatre to run InterACT2015 – a three-day disability arts festival showcasing performances, classes and workshops in Auckland.

The festival was held for the fifth year running at the Corbans Estate Arts Centre in Henderson in October. It attracted 200 performers, 3750 visitors and reflected the diversity and multi-cultural flavour of Auckland.

Interacting Trust Chair Rod Wills said the free workshops and classes held each day of the festival were full. Workshops were held in drumming, dance, community circus, hip-hop, group singing, Zumba and face painting. Formal classes with art educators were held twice a day.

Interacting community film-maker Hank Snell made a 10-minute documentary during the festival, assisted by festival participants.

The Gala Night performance featured the Variety Voices Choir, singer Caitlin Smith, Johnny Mateson and Confusion, Mutes from Mars, and the new show Once Upon A Court Case by Interacting Disability Theatre.

Rod Wills said organisers assessed the impact of the festival by counting the numbers of people at the site over the three days, but the reality was that many people were involved across the disability sector and in the wider community for months in preparation for the event. He said the festival had become a regular part of the year’s arts activities and coming back to the community arts centre was like a homecoming each year for many participants.

The following film was made by participants of the three-day event.

Touch Compass pushes the boundaries

Two dance works exploring limitations, scale and physical boundaries, were staged in 2015 by a dance company devoted to giving disabled people the chance to dance at a professional level.

Touch Compass is an inclusive national dance company based in Auckland. In August 2015 it staged a multi-media show, Acquisitions, in Hamilton and Wellington. The production was made of up of two performance works, Undertide and Watching Windows, alongside a series of short films. Three of the seven dancers who performed the works have disabilities.

Undertide examines how human beings experience living within a body – from the inside out. Watching Windows explores humanity as seen through little windows. In each work, the dancers used boxes as props – dancing inside them and around them.

Touch Compass Artistic Director Catherine Chappell says the intent is always to stick to the choreography of the works, but the works were slightly modified to suit the dancers’ particular physicalities. “Different bodies can do totally unique movements,” she says. This was true for any dance company, because there are always particular qualities that a dancer brings to the work. “But it’s more pronounced with our company.”

Catherine says the dancers are challenged to push beyond what they believe are their own capabilities. “That is our whole ethos in Touch Compass. When someone comes in, they have to work really, really hard.” The company works hard to find strategies, such as visual cues, to help dancers recall their moves.

She says Touch Compass is one of the few dance companies in the country offering a career path to dancers with disabilities. It sets out to challenge and change views on what dance is and who can do it.

“I actually get very frustrated that we can’t reach more people and we can’t do more shows,” Catherine says. “I think people who come to see us, their attitudes change. You just want to be able to reach more people and touch more people.”

The company is also evolving in the way it thinks about itself. Catherine says they have stopped using the terms mixed abilities and integrated dance and instead uses ‘inclusive’ to describe their practice. “Eventually we won’t need labels.”

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Studio2 / The Margaret Freeman Gallery take art into the community

2015 was a great year for Studio2/the Margaret Freeman Gallery. Our art space is firmly established in the centre of town. But rather than keep artwork within the confines of the gallery we branched out. We felt strongly that everyone should have access to art. We have focused on getting our artists' work into the community where everyone can enjoy it. Art adds vibrancy to local communities.

'On the Buses', the entry from Studio2, was judged runner-up in the best film and visual art section of the 2015 Dunedin Fringe Festival. Our exhibition involved digitally reproducing Studio2 artists' work on the back of city passenger buses for the duration of the Fringe Festival.

Studio2 artists, with assistance from Studio2 programme facilitators and volunteers painted two Chorus Boxes. We now have three shop fronts around Dunedin that we use for pop up window exhibitions. We conducted a survey of the people in the vicinity of the South Dunedin shop window and we delighted with the responses we got. People much preferred to see Studio2 artists work in the windows to the empty shop. Our artists also enjoyed seeing their work exhibited in the community in places where everyone can see it.

We hosted numerous exhibitions, including openings, to which the artists' family and friends were invited. And to top off a great year, Studio2 artist Andrew Keogh was a regional finalist in the 2015 IHC Art Awards.

Travel Safe Guide - a guide to being out and about

Funded by the IHC Foundation, the Travel Safe Guide - A guide to being out and about for people with intellectual disability, was produced for IHC's service company IDEA Services in 2015.

"We received a huge amount of positive feedback about this project", says Dr Annick Janson. The downloadable hard copies are personal workbooks in which people can enter information about their surroundings, streets and public transport stations, along with more personalised information. IDEA Services distributed this resource nationwide after a  successful pilot was carried out in the Waikato, King Country region.

The video below is companion to the hard copy resource available at: http://www.ihc.org.nz/resources/travel-safe-guide.

Chamber Music New Zealand - Concerts create some good vibrations

Music makers and their audiences made some rare connections at two accessible concerts run by Chamber Music New Zealand this year. They did it without a concert hall, or evening dress, or any of the other trappings of classical music.

The impact of the music took people by surprise. Rebekah Corlett – mother of Sophia, a seven-year-old with autism – found herself at a school concert with a difference in Porirua. “There was a classical guitarist, flautist and saxophonist ... led by a rather rock ‘n’ roll-looking singer with a guitar and dreadlocks,” she later blogged.

“Sophia walked calmly over to me and sat on my knee. She never does that. She took my hand that was tapping my knee to the rhythm of the song, placed it on her chest, and looked me right in the eyes as if to say, ‘I like this’. So I continued to follow the rhythm, this time with my hand on her chest. “It was a moment – a rare but real interaction with my daughter. What a gift,” Rebekah says.

The concerts and preliminary workshops were held in Christchurch and Porirua, both involving people with intellectual disabilities as performers and audience participants. They were staged as part of Chamber Music New Zealand’s Accessible Concert Programme led by community musician Julian Raphael.

Julian and the Menagerie South Ensemble – Tessa Petersen (violin), John Van Buskirk (piano) and Mark Walton (clarinet) – worked with Hohepa residents and staff in Christchurch in April/May. The programme was made up of 10 sessions and a final concert and involved 70 adults over three days.

“That was a wonderful week. I look on it as one of the turning points of my career,” Julian said. “I could see that the music was working in a pertinent way. There was a very, very strong meaningful responsiveness to the music.”

Then in September, at Mahinawa Specialist School in Porirua, Julian aimed for a similar connection with a younger student audience. He led a programme of 12 sessions and concert with Trio Amistad – Simon Brew (saxophone), Rebecca Steel (flute) and Jane Curry (classical guitar).

Trio Amistad’s Simon Brew found the experience inspiring. He said his highpoint came in one of the vocal workshops run at Mahinawa ahead of the concert at the Pataka Performing Arts Space.

“It was the moment when we had stopped the singing and Julian and I were doing some improvising. Julian realised that it was going well and he selected a song that was calming. “The communication and interweaving of the vocals with my improvised saxophone lines was at times meditative and at other times downright raucous. This was something I was not expecting at all; a feeling that you can’t just create, but one that happens in concert, but only a few times in one’s career.

Mahinawa caters for students from new entrant to 21-year-olds. School music therapist Megan Berentson-Glass said the music sessions and concert, attended by around 100 people, had provided the opportunity for everyone to join together in one place for the first time.

“Some of our students find new settings and large numbers of people overwhelming, so the workshops provided opportunities for them to participate in this project even if they were unable to attend the concert on the day. In fact, we skyped in from the concert on the day, and the students who remained at school were able to watch the concert and play along at school, so everybody was included."

Chamber Music New Zealand Education and Outreach Coordinator Sue Jane said they were thrilled with the positive feedback. “These experiences have reinforced Chamber Music New Zealand’s commitment to our accessible programmes.”

IHC Foundation Chair Sir Roderick Deane said the Foundation was delighted to support Chamber Music New Zealand’s initiatives to bring music to people with intellectual disabilities.

Read more

Youngsters perform alongside top string quartet - Hawke's Bay Opera House 2014

A concert to clap and sing along to - New Plymouth Theatre Royal 2013

The June interview: changing perceptions of chamber music. - Arts Access Aotearoa

Disabled refugees tell their stories

Research stresses that, beyond marginalisation, disabled refugees are invisible to disability services and to the rest of society, compounding an already difficult resettlement experience in New Zealand. Stories from families that have navigated disability services are the only source of meaningful help we can provide to them.

This project compiles and distributes an audio-visual repository of oral stories to add to the limited knowledge about disability services among disabled refugees and their families. The digital stories collected will be available to refugee families through multiple sources to increase their chances of contributing meaningfully to their new society by advocating for their rights, working or furthering their education. Some stories are filmed in their native languages.

A Professional Development programme is planned to update those working with disabled refugees about the suggestions made by disabled refugees and their families to improve intervention impact.

The Big Event

The Big Event took place on 5th & 6th April 2013, having been made possible through the very generous assistance of the IHC Foundation.

We can truly say that it was the biggest expo of its kind in New Zealand. Ninety exhibition stands plus a huge Youth Section showed new products and services, as well as offering visitors new experiences. A fully curated Art Exhibition called “Perspectives” was a great draw card with all the exhibits being produced by artists with disabilities. The Sensory Space gave people the chance to experience their senses and the Innovation Corner showed examples of adaptations to make life easier. An entertainment programme added a great sense of joy to the atmosphere. Quite apart from the benefits for the general public, the benefits of networking and collaborating for the providers and exhibitors were immeasurable.

There were many families that attended and many people with intellectual disabilities took advantage of the expo. Comments on the value of being able to meet such a lot of service providers under the same roof and at the same time were common.

The grant enabled us to meet some of the expenses in the Youth Section for which a number of high cost pieces of equipment were hired. This enabled young people to experience new activities in a safe, fun way, While extending them physically and intellectually. l have attached copies of some of the accounts.

Overall, we feel we achieved our objectives in promoting the concept of inclusion and were able to demonstrate the benefits of working collaboratively. The support of the IHC Foundation was hugely valued and we were very pleased to be able to recognise it at both the opening and closing events, as well as with the banners that were displayed in the foyer. We also ensured the logo was printed on the visitor handout.

With our thanks and appreciation, Yours sincerely

Chris M Ross Chairman