Life Unlimited - Infolink, Autumn 2017

INFOLINK

CONNECTING YOU WITH DISABILITY INFORMATION

AUTUMN

2017

WELCOME This year we’re excited about providing new ways for people with disabilities to access high-quality, personalised information so they can make informed choices on how they live their life.

In this issue of Infolink we talk with Life Unlimited information advisor April Johnson about the reasons why we've developed an online information resource in conjunction with a personalised information service.

We also speak to regular Infolink contributor and Life Unlimited community liaison John McIntosh about some of his extraordinary life achievements.

You can read extended versions of our Infolink articles on our website, and make sure to visit our new Online Information Hub at www. lifeunlimited.net.nz/hub

IN THIS ISSUE

WAIKATO SPORT PROGRAMME TO CONTINUE IN 2017

Hamilton-based Life Unlimited will run Sport Waikato’s popular Sport Opportunity After School programme in 2017.

The programme provides sporting opportunities for children and young people with disabilities between the ages of 5 and 21.

Well-known wheelchair sportsperson Maioro Barton will continue to lead the programme as part of Life Unlimited’s community services team.

Life Unlimited chief executive Mark Brown said the programme aligned with his organisation’s strategic direction of enabling people to live the life they choose.

“We already provide a range of services in Waikato which foster community participation and enable inclusion outcomes for all.

“Our programmes, such as Best Buddies, The Social Club, Life Fit and the Waiata Group, provide opportunities for people with disabilities to meet and make new friends and be involved in the community.

“We see the addition of Sport Opportunity After School to our activities as a ‘natural fit’,” said Brown.

AFTER SCHOOL SPORTS PROGRAMME CONTINUES

Black Fern Honey Hireme, who was recently promoted to community support manager at Life Unlimited, will oversee the programme and given her sporting background, is likely to participate as well.

ONLINE INFORMATION HUB GOES LIVE

“I find this programme inspiring. It’s a good way for kids to be exposed to different sports. It’s delivered by a range of clubs and the people really get involved with the children.

REVISED DISABILITY STRATEGY

“What I really like is the children themselves, both with physical and intellectual disabilities, are very caring of each other, they embrace and help each other and celebrate success in a unique way.

2017 ALTOGETHER AUTISM CONFERENCE WHAT'S ON

PUBLISHED BY

“It’s not about winning or losing, it’s about participating. They have a real sense of achievement,” said Hireme.

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Maioro Barton and Honey Hireme will run the Sport Opportunity After School programme. Pictured with Life Unlimited chief executive Mark Brown.

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ONLINE INFORMATION HUB GOES LIVE Life Unlimited has unveiled a new way for people to get the information they need to live the life they choose.

specific to them, and they don’t want to have to go to a lot of different places to get it.”

That’s why Life Unlimited has developed a personalised information service alongside the Online Information Hub to help people who may have more specialised requests for information.

That means anyone can contact the organisation with any disability-related question they have, and Life Unlimited will do all the running around to find an answer.

The Online Information Hub pulls together information on a range of topics like living options, finding financial support, wellbeing, and work and study. And it’s been developed for people with disabilities as well as their family and carers - whether they care for children, teens or adults.

“What’s different about our information service is that it’s personalised and people can access it from lots of different points - from a Māori disability officer, over the phone, through an online enquiry or in person at one of our equipment stores.

“People have told us the service we’re developing fits in with what they want and what they need.”

The project was coordinated by Information advisor information advisor April Johnson, but April Johnson she says many people have shaped the final outcome.

Visit www.lifeunlimited.net.nz/disability-information to access the Online Information Hub or to make a request for personalised information.

From the outset, the online resource was developed in consultation with a focus group of disabled people and their families. A reference group reviewed the information every step of the way to ensure quality.

Johnson says the impact of access to good information is “huge”.

“It makes a rocky road so much easier. But it has to be correct information - useful information - that is easy to understand.

“Many people we talked to also told us they don’t want to know what they don’t need to know. They want information that’s

DISABILITY STRATEGY REVISED FOR 2016-26

JOHN MCINTOSH

Education: We get an excellent education and achieve our potential throughout our lives.

Employment and economic security: We have security in our economic situation and can achieve our full potential.

The New Zealand Disability Strategy will guide the work of Government agencies on disability issues from 2016 to 2026.

Health and wellbeing: We have the highest attainable standards of health and wellbeing.

It can also be used by individuals or organisations who want to make the best decisions on things that are important to people with disabilities.

The vision behind the strategy is New Zealand as a non-disabling society where disabled people have an equal opportunity to achieve their goals and aspirations, and all of New Zealand works together to make this happen.

The strategy highlights a number of outcome areas that encapsulate the vision behind the strategy and provide an aspirational description of what things should look like for disabled people in the future.

Rights, protection and justice: Our rights are protected, we feel safe, understood and are treated fairly and equitably by the justice system.

Community liaison, John McIntosh

The strategy is guided by three sets of principles: the principles of Te Tiriti o Waitangi; the principles of the Convention on the Rights of Persons with Disabilities; and ensuring disabled people are involved in decision-making that impacts them.

Most importantly, the disability strategy was developed in consultation with a large number of disabled people and is written from that perspective.

Accessibility: We access all places, services and information with ease and dignity.

Attitudes: We are treated with dignity and respect.

Choice and control: We have choice and control over our lives.

Leadership: We have great opportunities to demonstrate our leadership.

The challenge in 2017 is to develop an Outcomes Framework to measure the progress of the Disability Strategy. This will be developed in consultation with the public.

You can read the entire strategy at the Office for Disability Issues website and keep up to date on the consultation schedule for the Outcomes Framework: www.odi.govt.nz.

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HUMOUR, INVENTION AND REBELLION Life Unlimited community liaison John McIntosh talks with Infolink about some of his achievements.

After the plaster cast was removed, John was told he would have to wear a heavy metal and canvas brace around his torso for years.

“When I was 15 or 16, I thought I’m not going to get a girlfriend strapped up like that. So I made the decision to get rid of it. I took it off and never wore it again, and in fact - this is not an advisable thing to say - I threw it off the bridge into the river. I didn’t want to ever see it again.”

In the 1960s and 70s ‘dine and dance’ venues offered a glimmer of sophistication in towns up and down New Zealand.

And, if you were a frequent patron of ‘dine and dance’ evenings at the Hillcrest Lodge Restaurant in Hamilton in the 70s, chances are you would have seen John McIntosh behind the drums four nights a week in the Max Cleaver Trio.

Drums were an unlikely choice of instrument for a young man like John. He was born with scoliosis - a severe curvature of the spine.

Typical symptoms include limited mobility and heart and lung difficulties – the type of symptoms that make lugging around a drum kit challenging.

But, John explains, he was a drummer almost from the day he was born.

Encased in plaster from neck to ankle from infancy until the age of three, John spent a lot of time in pain. A love of music provided much-needed relief.

“The only way my mother could keep me occupied was to prop me up in front of the radio. She noticed I really loved music. As I got older, she’d give me spoons and a couple of pans and I’d bang and crash away.”

John’s parents were his greatest advocates early on. “When I was almost five and it was time to go to school, the doctor said ‘put him in an institution and come back and get him when he’s 18.’

“But my parents said no. He’s going to a normal school; he’s going to live a normal life - which was pretty impossible back in those days. Schools were not set up for children with disabilities.

“I went to an ordinary state school with no provision for disabled children, so I had to make the best of what was available. And I guess part of that - and it’s unique to people with disabilities - is you have to find different ways of doing things. We don’t stick to the normal, because we can’t do normal. So we become inventive. And I certainly did that.”

John also credits his sense of humour for getting through almost every challenge. But there’s a pinch of rebellion too.

John and wife of 43 years Marilyn enjoy travelling throughout New Zealand.

John started work at the milk treatment station in Hamilton after high school. They provided him with a scholarship to Massey University and he eventually became responsible for the laboratory there. It’s also where he met his wife of 43 years, Marilyn.

At the time, disabled people were not encouraged to have a family. “Back in the day, disabled people when they married were expected to marry other disabled people and not have children.”

Son, Glenn, arrived five years later.

A downturn in agriculture prompted the start of John's long career working and advocating in the disability sector.

“I thought this is my opportunity to try something completely different.”

John registered at Workbridge, a newly established employment organisation for people with disabilities. They offered him a job with the organisation on the spot.

He was asked to join Life Unlimited in 2003 as business manager.

“I thought, why not. It looked like a good organisation, I liked the people, I liked the philosophy,” says John.

John now works with Life Unlimited as community liaison in addition to being involved with a number of other disability organisations and committees.

John cites his involvement in pioneering individualised funding as one of the highlights of his time working in the sector.

“Individualised funding allows people with disabilities to have control over their own future and funding to determine their own support needs. At the time it was revolutionary.”

But John believes there’s still room for improvement.

“I still think there are not enough people with disabilities in prominent roles in New Zealand, such as chief executives, members of parliament and other high-profile positions."

John McIntosh engages in his passion for music behind the drums.

And the drums? John admits he doesn’t play as much these days.

But his passion for music, which led him to tour with the likes of Suzanne Prentice, Jodie Vaughan, Gray Bartlett and Hamilton rock and roll legends The Satellites, is still very much alive.

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ALTOGETHER AUTISM CONFERENCE 2017

WHAT'S ON

The Altogether Autism Conference takes place on 19-20 July 2017 at the Holiday Inn Auckland Airport Hotel. It provides a unique opportunity for people on the autism spectrum, their family and whānau, researchers and clinicians to come together and discuss best practice, hear lived experiences and share learnings.

3 March - World Hearing Day

This year the conference will focus on supporting and empowering people on the spectrum to make successful transitions as they navigate new challenges on the journey through life.

12 March - Water Sports Day - Raglan Experience the thrill of waka ama and paddle boarding at Kopua Domain, 9.30am-1pm. Visit www.halbergallsports.co.nz

The conference will feature a range of speakers drawing on lived experience as well as professional expertise, and provide opportunities to participate in workshops.

18 March - Renew workshop - Rotorua A day of self reflection that will leave you energised, with new family connections, new ideas, hopes and aspirations. Contact Breanna from Parent to Parent at centrallakes@parent2parent. org.nz

Emeritus Professor Rita Jordan from the University of Birmingham has been confirmed as a keynote speaker at the conference. Prof Jordan has been at the forefront of autism education, developing a number of programmes in autism studies Prof Rita Jordan at the University of Birmingham since 1993. from the University She received an OBE in 2007 for services to of Birmingham special education, and was awarded with a lifetime achievement award from UK organisation National Autistic Society in 2014.

Also speaking is Jason Edgecombe, founder and mentor at Breaking the Label, a Tauranga-based organisation which offers peer mentoring to young people on the spectrum.

The Altogether Autism conference is a great opportunity to gain a wealth of knowledge, exchange ideas and engage in debate. It also provides an opportunity to network with other professionals, colleagues, parents and friends to update your knowledge and learn from your peers.

Importantly, organisers are working with the Altogether Autism consumer reference group to ensure the conference will be an inclusive and autism-friendly environment.

TRANSFORMING LIVES

11 March - Breaking the Sounds of Silence - Auckland A forum for the adult cochlear implant community and health professionals, to be held at the University of Auckland Tamaki Campus. Visit www.pindrop.org.nz

18 March - TriAbility Triathlon - Hutt Valley An inclusive multisport event for people of all abilities at William Jones Park from 9.30am. Visit www.sportwainuiomata.com to register.

1-2 April - New Zealand Low Point Wheelchair Rugby National Championships - Te Awamutu Free entry for spectators at Te Awamutu Events Centre. Contact davidk@sportwaikato.org.nz 6 and 7 April - Mind Over Manner workshops - Wellington A choice of two interactive workshops about sensory processing and cognitive differences aimed at parents, carers and professionals who work with people who think differently. Visit www.mindovermanner.co.nz 7-9 April - SibCamp - Waikato SibCamps provide a chance for 8 to 18-year-olds, who have a sibling with a disability, to have a fun weekend just for them, and to make friends with siblings in similar situations. Contact Ruth from Parent to Parent at rutht@parent2parent.org.nz 19-20 July - Altogether Autism Conference - Auckland Visit www.altogetherautism.org.nz/conference Puneeta lives in a village in Uttar Pradesh, one of the largest and most populated regions of India. It is home to the poorest people in India, many of whom rely on agriculture for their livelihood.

A large number of these people are subsistence farmers living with a disability, who find access to their fields very difficult.

Four years ago cbm started an organic farming project in Uttar Pradesh which encouraged sustainable economic development and assisted farmers to lift themselves out of the cycle of poverty.

As part of this project Puneeta was given advice on how to apply for Government funding to finance her special wheelchair tricycle. She was also given advice on how to start beekeeping and supplied with modified beehives which she could access from her customised tricycle.

With the support of cbm, Puneeta's beehives now generate 84 litres of organic honey each year that she can sell at the local market.

Read the full story about how cbm’s project in Uttar Pradesh has changed Puneeta’s life on www.lifeunlimited.net.nz/news