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.

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.

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.

Taimahi took a coffee cart and ran with it

Taimahi Trust has come a long way from a coffee cart with four guys on the side of the road to a group of micro-enterprises providing great food and eco-products to Whangārei and beyond.

Taimahi still operates its mobile coffee cart but has added a drive-thru hāngī every Friday night in Whangārei. Its retail store provides affordable fresh fruit and vegetables in partnership with the Foodtogether national collective. Its online store, Earth & Honey, sells eco-friendly beeswax food wraps and sustainable, organic products. Taimahi is also developing an organic herb garden in its hothouses for use in its commercial kitchen and for sale through its Foodtogether Fresh store and online.

The vision of Taimahi founders Rachel and Alison Faithfull was always greater than a single coffee cart – it’s about independence not dependence. Both women have a business background and sons with Down syndrome and see the potential of micro-enterprises in providing meaningful and ongoing employment.

“That coffee cart started this whole thing off. I bought it to give Nathan a job – because for him there were no jobs,” Rachel says.

That was in 2017. In 2019 Rachel and Alison started Taimahi to develop the abilities they know their sons, and other people with intellectual disabilities, have. The IHC Foundation contributed $5000 towards a new $7000 coffee machine and after that there was no stopping them.

“This coffee machine has enabled real barista training for Nathan and for others who would never have had the opportunity to develop this capability. And our customers love the coffee they make.”

In September 2020, Taimahi Trust received $995,000 from the Provincial Growth Fund to train 30 people aged 18–25 with intellectual disabilities and high social needs to work in horticulture, hospitality and retail. Trainees do an initial training programme that focuses on employability, for example, personal hygiene and how to catch the bus. There is an automatic progression from trainee to intern.

Rachel says Taimahi is getting support from the Ministry of Social Development to pay wages, and its aim is to be a self-sufficient social enterprise.

“Our approach is work-based. Our people learn by seeing, then doing and receiving feedback to help improve and master their work. This is, for most of our team, the first time they have had real workplace expectations placed on them.”

She says families are reporting a huge growth in confidence and relationships as trainees discover their identities through working, having their talents and skills recognised and working with others.

“Customers and visitors to the Trust say there is a feeling about Taimahi that is hard to describe. It’s a feeling of positive energy they say. It’s all about building capability to make better decisions.

“There is no shortage of ideas when you take an entrepreneurial view.”