Good nights Canterbury - and better days

University of Canterbury researchers have taken a major step forward in treating sleep problems in children with Autism Spectrum Disorder and have now extended the project to include children with rare genetic neurodevelopmental disorders.

A high proportion of these children have difficulty with bedtime routines, problems settling to sleep, waking at night and waking too early.

"This is harmful to the child’s development in many areas of life and adds to the stress experienced by parents and siblings," says Associate Professor Laurie McLay, a principal investigator in the Good Nights Canterbury Autism and Sleep Project.

She says sleep problems can be related to a number of factors, including sleep/wake schedules, sleep hygiene, and other aspects of the sleep environment.

“There is often some kind of circadian component – some aspect of the sleep/wake cycle that will need to be adjusted.” The circadian rhythm is a 24-hour internal clock that cycles between sleepiness and alertness. “We start by looking at circadian components then we look at sleep hygiene (factors in the bedroom environment and bedtime routine) and other environmental factors that might be maintaining the sleep problem,” Laurie says.

"Our research has now shown that there is a range of strategies therapists can recommend to parents and children that are highly effective in helping children with ASD get a good night’s sleep, but they need to be tailored to each child. It is the individualisation that makes the big difference.”

Funded by the Health Research Council and the IHC Foundation, the project involved 41 families with a child aged 3 to 15 years who had received a clinical diagnosis of ASD and had at least one severe sleep problem. Two-thirds of the children were boys. The families came from throughout New Zealand, with those outside Christchurch taking part by email, phone and Zoom/Skype.

A sleep diary kept by parents, complemented by videos of parent-child interaction and a range of standardised questionnaires, helped researchers understand the child and their sleep problem.

Researchers analysed the child’s sleep/wake schedules, sleep hygiene, and environmental factors, including the interactions between the parents and child, that might have contributed to the sleep problem to create an individualised sleep treatment.

The study found that the severity of the sleep problem was reduced for the majority of the children. The benefits of treatment were maintained at both short-term and long-term follow-up (at 4–6 weeks and again at 12–14 weeks after treatment). As yet unpublished results also show that the improvement in the children’s sleep also let to reductions in their ASD symptoms and their behaviour and to some improvements in parents’ wellbeing.

The team is continuing its research and welcomes enquiries from parents interested in participating. Contact Laurie McLay or Karyn France.

The research has been published in the Journal of Autism and Developmental Disorders

Listen to the Radio New Zealand interview

Imogen’s kitchen rules

Imogen Dobbs is developing gourmet tastes and smart kitchen practices that are keeping her Mum, Penny, on her toes.

Imogen is a team member in Recreate NZ’s Our Harvest kitchen in Auckland, where she helps to process fruit and vegetables grown in Recreate’s two orchards at Kumeu and Karaka. The skills she has learned have led to a part-time job as a kitchen assistant at Gatting’s Catering in the city.

Brent Jenkin, General Manager at Recreate NZ, says its work experience programmes develop great work habits and transferable skills. The organisation offers pathways for learning and development for young people with intellectual disabilities like Imogen, working with the individual and the family to gradually introduce new challenges and goals.

“The programmes are tailored to respond to our young participants’ needs at each stage of their life, developing all the skills required to live as full and independently as possible.”

Programmes for the junior age group focus on social and behavioural skills and learning to do things in a group or team. Participants add more skills as they move through the youth and young adult age groups, including adventure activities that push boundaries and develop self-esteem and confidence.

“Learning and development culminates in our education steam, where participants learn all the activities of daily living in our life-skills programme and can be followed up with the Moxie work experience programmes,” Brent says.

Penny Dobbs says the programmes have been life-changing for Imogen. “They provide an opportunity for our young people to connect with peers in an environment where they are genuinely valued for their capabilities,” she says.

“Imogen’s experience with the Moxie Our Harvest group and the skills she has learnt opened a pathway to employment.

“Imogen loves the process of product-making and then the marketing and selling. Her communication skills have improved so much. She practises her sales pitch at home – and on our friends often – and has terrific product knowledge.”

Last year Recreate received a $45,000 grant from the IHC Foundation towards its life skills programme.

Photo caption: Imogen Dobbs (third from the left) with the Our Harvest team.

Mean As! project challenges us to live and let love

Seven disabled New Zealanders tell their stories of relationships and sexuality in new research by the Donald Beasley Institute in Dunedin.

These seven stories are the first unfiltered accounts by whaikaha (disabled) Māori and New Zealand men and women with learning disabilities. They challenge listeners to allow disabled people the same rights as other New Zealanders to live and love.

The ‘Mean As!’ research project, funded by the IHC Foundation, is an online library of written and recorded stories created by disabled people working together as storytellers and researchers, and beautifully illustrated by Otago artists.

The library also includes two project reports:

• A report written by four researchers with learning disabilities that describes the project in plain language and presents their ideas as a set of key messages.

• A report by academic members of the research team describing why the project and the way it was co-created is important and takes us beyond what we are used to hearing and doing.

The stories, sometimes presented as letters or poems or pūrākau (legend), uphold the mana and dignity of the storytellers and reflect their individuality.

“A lot has been written about the lives and sexuality of people with a learning disability – but not by us,” the researchers with learning disabilities said in their report. They said there was a little bit of every person with a learning disability in every story.

William Luskie, Vanessa Jane Murphy, Darryl White and Cheryl Wallace listened to stories that were sometimes difficult to hear and brought fresh ideas to a research space dominated by the voices and theorising of academics and other professionals.

“The project has gained a lot of interest and attention from researchers interested in sexuality and/or inclusive research,” says Donald Beasley Institute Director Brigit Mirfin-Veitch. “As a result, the research team are also currently writing a series of papers for peer-reviewed journals and a book chapter to further promote the research and its findings.”

This research project was named the “Mean As!” Project because it was what storyteller Tipa said about his pūrākau after listening to it for the very first time.

The actors who volunteered to record the stories came from the University of Otago School of Performing Arts, Arcade Theatre Company, personal connections and the Otago Actors Agency.

Read more.

Photo caption: Researchers (from left) William Luskie, Vanessa Jane Murphy, Cheryl Wallace and Darryl White.

First-time racer takes the trophy

First-time yacht racer Susan Morris from Northland swapped the joys of fishing and dolphin-watching to scoop the Ability Trophy in a national yachting regatta on Wellington harbour.

Susan came to Wellington ahead of the regatta for some pre-race coaching. It paid off for her and also for second-place winner Matthew Henderson from Lower Hutt.

Fourteen teams competed in the Ability Trophy for sailors with intellectual disabilities or acquired brain injury, who sailed with a companion crew.

The Sailability Wellington Trust hosted the 2020 Hansa Class National Championships at the end of February. The regatta was held at the Sailability Wellington’s Seaview base in Lower Hutt, in association with the Lowry Bay Yacht Club.

It was the biggest national regatta so far with 60 sailors from around the country and Australia participating in the championships.

The IHC Foundation contributed $10,000 to two pre-race coaching sessions. Fourteen Sailability coaches from throughout New Zealand joined in a two-day ‘coach the coaches’ session run by Tim Coltman of Sport New Zealand. The second session of pre-race training for sailors was led by World Sailing accredited coach John Sanderson of Sydney. It attracted 18 sailors, 16 of whom were people with intellectual disabilities.

Competitors raced in two classes of boat – the HANSA 303s and Liberties. 

“My 303 sailor and skipper Susan Morris was stunned by what happened, as that was her first yacht race ever,” says Chris Sharp, who crewed with the Ability Trophy winner. “She has been sailing with me for very non-competitive experiences. We often catch fish while we sail and play with the dolphins.  It couldn't get further away from racing, but with a bit of excellent coaching, this result really stumped her.”

Sailability Wellington spokesman Don Manning was thrilled with the sailors’ achievements. “The speed of the people with intellectual disabilities getting around the course was no different than any of the others,” he says.

Treaty of Waitangi now in easy-read format

The IHC Foundation has funded a new resource about the Treaty of Waitangi for people with intellectual disabilities.

‘The Easy Read Book About the Treaty of Waitangi’ is thought to be the first book specifically designed for people with intellectual disabilities to help them learn about and understand the treaty, including their rights and how to protest.

More than 96,000 New Zealanders have intellectual or learning disabilities. But there have been few – if any – resources about the treaty designed specifically for this community.

IDEA Services’ National Māori Advisory Group, Te Anga Pāua O Aotearoa, realised that while training resources had been developed to help support staff understand the treaty, similar resources were not available for people with intellectual disabilities.

They met with the Tangata Tiriti – Treaty People organisation and two years later Tangata Tiriti has produced a great resource that will be available to everyone with an intellectual disability.

The 3000 Easy Read books, which use simple language and images to convey the importance of the treaty, will be distributed to every public library in the country.

Copies will also be available through IDEA Services area offices and the IHC library.

The publication has been enthusiastically received by a sample group of people supported by IDEA Services.

The book was launched at Hui Te Rangiora Marae in Hamilton in February.

Advocates see gaps for adults at risk

A merger of two organisations working to protect the interests of adults with intellectual disabilities will provide stronger support for people at risk from abuse, harm and neglect. The merger will also build pressure for a mechanism to safeguard adults between the ages of 18 and 64.

In 2019 the Personal Advocacy Trust (PAT) and the Safeguarding Adults from Abuse (SAFA) collective joined forces to strengthen the advocacy and safeguarding services on offer to adults. The merged organisation is called the Personal Advocacy and Safeguarding Adults Trust (PASAT).

Since January 2019, PASAT has had enquiries or referrals from 50 adults at risk.

Erika Butters, PASAT National Advocacy Director, manages the advocacy side of the organisation, which now includes short-term advocacy and supported decision-making among the services it offers.

Sue Hobbs, Safeguarding Adults National Director, manages the safeguarding response, which now extends beyond Auckland, and has widened to include services alongside advice.

Erika says the new organisation will be able to gather evidence of support needs to take to Government. “The partnership has broadened the scope to do more, to help more. The trustees are not looking for business opportunities, they are recognising the need and responding to need,” she says.

Funding from the IHC Foundation supported the redevelopment of PAT and the subsequent merger of the organisation with SAFA.

This story was published in the IHC magazine Community Moves. Read more.