Getting Out There, 28 July 2020

2020-21

What makes a Good life

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2020-21

What Makes a Good Life?

What makes a Good life

Published by NZME Northland in conjunction with the Tiaho Trust.

3

Contents 4-5

Information & Services

34-35

NorthAble

6-7

Tiaho Trust

36-37

Parent to Parent

8-9

Alzheimers Northland

38-39

Parkinsons Northland

10-11

Arthritis Northland

40-41

Stroke Foundation

12-13

Blind Low Vision

42

14-15

Brain Injury Association

Volunteering Northland

43

Citizen's Advice Bureau

44

TLC4U2

45

Forget Me Not

46-47

Spectrum Care

48

BlomďŹ eld School

49

Special Olympics Whangarei

50-51

NorthTec

52-53

2020-2021 Calendar of Events

54-55

No Problem, You're Welcome

16-17

CCS Disability Action

18-19

Deaf Aotearoa

20-21

Northland Down Syndrome Support Group

22-23

Epilepsy NZ

24-25

Huntington's Disease Association

26-27

Muscular Dystrophy

28

Parafed Northland

30-31

MND New Zealand

32-33

Northland MS Society

WHEN:

Thursday 3rd December 2020 10am - 2pm WHERE:

Cameron Street Mall, Whangarei

For more information: 0800 430 3406

Information & Services

June 2020 Edition 12

Relating to disability in Northland Linking people, families and carers living with a disability to information, advice and support in their community.

Visit www.tiaho.org.nz/support find out more about what services these organisations provide in Northland.

In Northland, there are a range of organisations providing a Disability Information Advisory Service.

These are known as the ‘Northland DIAS Collective’.

Tiaho Trust supports these organisations by helping to improve the access to and utilization of their information and services in Northland for you and your families/whanau. Tiaho Trust is your first point of call if you are unsure who to contact or have any questions, call us on: FREEPHONE: 0800 430 3406.

The DIAS Collective provides various services about a specific disability, or disability in general, such as: • • • • •

Advice and information Advocacy Community education and awareness Support groups and networking Home visits

• • • • •

Access to health professionals Referrals and assessments Equipment Seminars/workshops Resources

Together, Tiaho Trust and the DIAS Collective, empower the Northland community by promoting the disabled community as valued citizens who contribute, participate and add to the diversity of New Zealand society.

For DIAS contact details please refer overleaf

Information & Services

Relating to disability in Northland

A Tiaho Trust Project

Your A - Z directory of disability support providers: Alzheimer’s

www.tiaho.org.nz/alzheimers 148 Corks Road, PO Box 7027, Tikipunga, Whangarei 0144 Whangarei (09) 438 7771 Dargaville 022 691 6068 Kerikeri (09) 407 3010 Kaitaia (09) 408 1123 northland@alzheimers.org.nz www.alzheimersnorthland.org.nz

Arthritis New Zealand

www.tiaho.org.nz/arthritis Unit B, 383 Khyber Pass Road, Newton, Auckland Freephone: 0800 663 463 info@arthritis.org.nz www.arthritis.org.nz

Blind Low Vision NZ

www.tiaho.org.nz/blind_foundation 277 Kamo Road, Whangarei Phone: (09) 437 1199 Freephone: 0800 243 333 info@blindlowvision.org.nz www.blindlowvision.org.nz

Brain Injury Association

www.tiaho.org.nz/brain_injury 98 Cairnfeild Road, Otangarei PO Box 4001, Kamo, Whangarei Phone: (09) 459 5013 northland@brain-injury.org.nz www.brain-injury.org.nz

CCS Disability Action

www.tiaho.org.nz/ccs 291 Kamo Road, Whangarei PO Box 8035, Kensington, Whangarei Phone: (09) 437 1899 Fax: (09) 437 0209 Freephone: 0800 227 2255 Northland@ccsDisabilityAction.org.nz www.ccsDisabilityAction.org.nz

Deaf Aotearoa Northland

www.tiaho.org.nz/deaf_aotearoa 1A Deveron Street Phone: 0800 332 322 national@deaf.org.nz www.deaf.org.nz

Down Syndrome Support Group

www.tiaho.org.nz/down_syndrome Kara Road, RD 9, Whangarei Phone: (09) 434 6723 Freephone: 0800 693 724 national.coordinator@nzdsa.org.nz www.nzdsa.org.nz

Epilepsy Northland

www.tiaho.org.nz/epilepsy Civic Arcade, Level 1, 37-41 Bank Street, Whangarei PO Box 1074, Waikato Mail Centre, Hamilton 3240 Phone: (09) 438 5498 Freephone: 0800 374 537 northland@epilepsy.org.nz www.epilepsy.org.nz

Huntington’s

www.tiaho.org.nz/huntingtons PO Box 16181, Sandringham Auckland 1351 Phone: (09) 815 9703 Freephone: 0800 432 825 huntingtonsakld@xtra.co.nz www.hdauckland.org.nz

Motor Neurone Disease

www.tiaho.org.nz/mnda Yarnton House, 14 Erson Ave, Royal Oak, Auckland PO Box 24036, Auckland 1345 Phone: (09) 624 2148 Mobile: 027 202 8166 teamldr@mnda.org.nz www.mnda.org.nz

Multiple Sclerosis Northland

www.tiaho.org.nz/ms Suite 6, 71 Bank Street, Whangarei Phone: (09) 438 3945 Mobile: 027 539 9883 nthlndms@xtra.co.nz www.msnz.org.nz

Muscular Dystrophy Assoc NZ

www.tiaho.org.nz/muscular P.O.Box 300429, Albany Phone: 09 415 5682 Mob: 021 704 227 info@mda.org.nz www.mda.org.nz

NorthAble

www.tiaho.org.nz/northable 40 John Street, Whangarei Freephone: 0508 637 200 drc@northable.org.nz www.northable.org.nz Equipment Showroom: (09) 430 3469 73, John Street www.equipmentplus.org.nz LYNKZ Community Participation Programme 40 John Street, Whangarei Freephone: 0508 637 200

Parent to Parent Northland

www.tiaho.org.nz/parent2parent Mob: 027 808 3942 Freephone: 0508 236 236 northland@parent2parent.org.nz www.parent2parent.org.nz

Parkinson’s Northland

www.tiaho.org.nz/parkinsons PO Box 641, Whangarei 0141 Phone: (09) 437 6876 Freephone: 0800 473 4636 northland@parkinsons.org.nz Whangarei/North vicki.sadgrove@parkinsons.org.nz Whangarei/South barbara.leslie@parkinsons.org.nz www.parkinsons.org.nz

Stroke Foundation

www.tiaho.org.nz/stroke Whangarei & Districts Freephone: 0800 459 954 northland@stroke.org.nz Mid North/Far North Freephone: 0800 566 383 far.north@stroke.org.nz www.stroke.org.nz

Disability A Matter of Perception

6

Tiaho Trust

E

ach year Tiaho Trust produce this magazine ‘Getting Out There’ to highlight what disability services are available throughout Northland. Not only do we profile 15 disability support organisations but we also provide stories about people who use their services. We have been producing the magazine for the last twelve years. If you’re organisation wants be in next year’s publication please contact us.

This year our magazine is focusing on the question of “What makes a good life?” for people with a disability in Northland. Having a good life is something everyone strives for, disabled people included. Sometimes disabled people need some support and acceptance to achieve a good life and the articles in this magazine provide an insight into that.

This year’s Getting Out There will showcase how the Northland DIAS Collective contributes to disabled people having good lives in Northland.

This year’s production of the magazine has been historic because it was compiled in the midst of the unprecedented lockdown in New Zealand due the Covid 19 virus pandemic. The interviews for personal profile were conducted over the phone.

Drafts, proofs and photos were coordinated via email. It was all produced remotely.

Tiaho Trust provides a free independent advocacy service to disabled people or their family members. If disabled people or their family members feel like you’re being treated unfairly because of your disability or you feel

you aren’t getting the supports or services you are entitled to, contact Tiaho Trust.

We were scheduled to run self-advocacy workshops in the Mid and Far North and in Whangarei in the near future. They aim to give disabled people and their families resources and skills to be able to advocate for themselves to ensure they are accessing all the supports they are entitled too. However due to the impact of the Covid 19 virus and uncertainty at the time of published this magazine we have postponed them to early next year.

Tiaho Trust endeavours to make our community more inclusive and user friendly to disabled people by providing their “No Problem, You’re Welcome” Disability Awareness Customer Service Training to a variety of organisations. We utilise facilitators with lived experience of disabilities to deliver this training using examples their own lives to educates organisations on how to deliver excellent customer service to the large market segment in our community.

We can also provide training for Health Professionals which in 2019 was endorsed by theRoyal New Zealand College of General Practitioners (RNZCGP). Training can be tailor made on request.

Tiaho Trust is a disabled led organisation that is proactive in providing advice, education and training to develop communities that are inclusive of disabled people and who value their contribution to the community of Northland.

Our aim is to provide an environment where we are responsive, that people feel included, and supportive of people with intellectual disabilities to feel empowered with the choices they make in their lives.

Our Services are centered on the person and their whānau and families.

Tiaho Trust Ground Floor Tai Tokerau Maori Trust Board Building 3 - 5 Hunt Street / PO Box 374 Whangarei Phone 09 430 3406 Freephone 0800 430 3406 Email info@tiaho.org.nz Web www.tiaho.org.nz Fb Tiaho Trust Disability A Matter of Perception

These include: Supported Living: We support people in their daily living, to participate in their community and take control of their own life and make their own decision. Stuart Jenkins states “

Or call Sally Hume Area manager on 09 407 -2008 or 09 479 2000

Disability A Matter of Perception

7

David Senior

D

avid Senior is a well known community leader in Kaitaia. He is well known because he is involved with community organisations. He is actually involved in quite a few of them, both past and present. Currently he is on eight boards and committees. An impressive amount. They are The Far North Regional Museum Trust, Kaitaia Budgeting Services, Northland Kindergarten Association, Far North Disability Resource Centre, Far North District Council Disability Advisory Group, Te Hiku Sports Hub Incorporated, Elevate (Christian Disability Trust) and last but certainly not least Tiaho Trust. David has been on our Board of Trustees for the last fifteen years. All of the Trustees on the Tiaho Board have an impairment of some kind, it’s our Kaupapa.

David is blind. He was born in Cambridge with Congenital Glaucoma. While he was deemed as being legally blind, he still had partial vision in one eye. David’s parents were dairy farmers and when David was eight years old, David boarded at the Homai School. Homai School was (and still is) a residential school for low vision, blind and deaf blind children. One of the reason’s David started school late was because he contracted Polio and needed time to recover.

While at the boarding school, he would mix with other children who were blind and often think “how do they do it” and “how horrible it would be”.

He was learning how to read using books

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with large text until the age of 13 when he had an accident at the school. When David tells the story of the accident it’s hard not to be astonished at irony of it and how it happened at a school for the blind.

Being one of 27 Junior boys at the boarding school and only 6 showers they would always race to be the first (guess this was to get a hot shower versus a cold shower). There were metal pegs on the side of the wall where you could hang your personal items. On this occasion David did win the race, but when he enthusiastically bent down one of the metal hooks jabbed into his left eye, his good eye. It caused

irreversible damage to his optic nerve.

He remembers going home for the Easter holidays on a bus and waking up in the morning telling his parents that his sight was more blurred than usual. They told him that unfortunately this would get worse until he lost all sight in that eye as well, leaving him completely blind. This twist of fate sounds diabolical, but David is philosophical about his blindness. At the time he struggled emotionally but found strength and comfort when he discovered Christianity. He realised he was in the same position as the rest of the blind students and that he would need to learn new mobility skills using a cane and braille.

David has lived in Kaitaia for the last 27 years. What he really enjoys is getting involved locally in the community at a Governance level. He likes the mental stimulation. He feels he is not only accepted as part of the community but valued by his community. He says “to be valued you have to contribute, and you have to earn it. If you want people to value you, you need to be seen out there dealing with all issues the good, bad and ugly. It’s about having that visibility in the community”.

What makes a good life according to David is to be valued by his community.

To be committed to his community. His Christian faith. His family (wife four children and four grandchildren) are more important to him than any material things.

He’s also proud to be on the Tiaho Trust Board and loves what we are doing for the community.

than 250 people to work alongside families and the people that need our support.

If you love people and supporting people to reach their potential, then you should consider working with IDEA Services. Our Support workers are well supported with training and development opportunities that lead to a formal qualification.

Contact us on careers.ihc.org.nz

Or call Sally Hume Area manager on 09 407 -2008 or 09 479 2000

Disability A Matter of Perception

8

Alzheimers Northland

T

he journey of a person with dementia can be much improved if the primary caregiver is able to have good support and regular breaks.

Kevin Salmon, of Alzheimers Northland, says well rested caregivers makes the whole journey different for all concerned.

“We see so many times that caregivers will try and soldier on for as long as possible at the expense of their own health.

“In many cases, these are the spouses who take their marriage vows to care for each other ‘in sickness and in health’ very seriously and we totally understand that.

“But caring for someone with dementia is relentless and exhausting. It’s a marathon over many years. It’s not being disloyal and there is no need to feel guilty about asking for help and taking a break every now again,’’ he says.

Alzheimer’s Northland provides a vital service for both clients and carers.

“When we talk about our clients, it is both the person with alzheimers and their carer.

Both need support,” he says.

The organisation has a purpose-built facility on Corks Road in Tikipunga, Whangarei.

The building has been designed around the needs of clients with dementia – it’s fully fenced, built on flat land to minimise hazards and fully secure.

There is a large communal area within the centre, a TV lounge and also a quiet room for clients who need a rest or one-on-one sessions with staff.

Usually, a day programme runs Monday to Friday from 10am to 3pm and is available to people in the Whangarei district who have been diagnosed with dementia and are funded by the Whangarei District Health Board. Clients can attend several times per week depending on their needs or the needs of their carers.

The day programme, or “Alz Club”, is specially designed for people with dementia.

Staff set up programmed activities that are modified and adapted to suit all levels of abilities.

Cognitive activities are a key focus within the programme, consisting of word games, board games, cards and puzzles. They also have regular creative writing sessions and reminiscing therapy.

There are many physical and social activities incorporated into each day as well as community activities.

Physical activities include mini golf, pool, bowls or even balloon volleyball and there is also a wide range of social activities including sing-alongs, music therapy, themed days and baking/cooking.

Kevin says carers can have confidence that their loved one will be well cared for and they can go and have some time for themselves.

“We have found that people who take advantage of our services find their relationships are better and they can cope

better and their health bounces back.’’

Another option is respite care, where the client goes into a specialist facility for a couple of weeks at a time.

“The common arrangement is six weeks at home and two weeks in care. There are different options available depending on the level of care needed.

“This gives the carer a chance to recharge their batteries so they are ready for the next time.’’

When it is no longer safe for the client to remain at home, permanent care can also be arranged.

Kevin says the youngest client they have helped was diagnosed in their late 50s, and dementia’s progress can take many forms and evolve over many years.

While the organisation’s regular programmes are currently unable to operate, there is a lot still going on behind the scenes, with regular phone support helping to make life for carers and clients a little easier.

Resources are also available on the Alzheimers Northland website, www.alzheimersnorthland.org.nz

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What Makes a Good Life?

9

Alzheimers Northland Sally & Peter Lawton

I

t started about six years ago when Sally Lawton’s husband, Peter, couldn’t recall places he had visited.

“He’d say he’d never been to really familiar places like Tutukaka or Mangonui so I knew something was wrong,’’ she says.

It took a while before her fit and active husband was diagnosed with Alzheimer’s disease, as initially he performed well in tests, she says.

But further testing a few months later showed his abilities had dropped.

“Dementia patients can have good days and bad days. They can plateau out for a while and then deteriorate suddenly.

“Even now my husband looks fine and is still fit, but he can no longer be safe at home.’’

Sally says she persisted for many years as his caregiver and eventually wore herself out.

“We both got chest infections, and this seemed to make Peter’s symptoms worse as well. He was convinced there were people in the house.’’

It became clear that he needed to go into permanent care once he was released from hospital.

“I felt so guilty at first as we have always been so close, but now I know he is safe and the support I have received from Alzheimer’s Northland over the years has been amazing.’’

Sally advises other people who are facing the same journey to take advantage of

respite care services.

She joined the carer support group and Peter attended the day centre twice a week.

Sally says the support group has been invaluable, with an opportunity to share ideas and advice.

“It’s a very good service,’’ she says.

Sally says she would set Peter tasks such as vacuuming or sweeping paths as well as regular walks.

“He always loved gardening and keeping our property immaculate, so he enjoyed these activities.’’

“You need a lot of patience when you are

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caring for someone with his disease. You need to repeat things a lot.

“Routine is very important and they need a lot of sleep,’’ she says.

Now in the Kamo Home, Peter is well cared for and she knows he is safe.

“The staff there are just amazing, and they are part of our family now,’’ she says. “I look forward to my visits with him a couple of times a week, and we’ll spend several hours together. And he still has his beautiful manners,’’ she says.

For Sally, a good life is knowing her loved one is well cared for and safe.

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is a purpose-built cottage, offering respite care and Early Childhood Education for children who have a disability and/or are medically fragile and/or are technology dependent within Northland.

19 Morningside Road, Morningside Whangarei, 0110 Ph: 09 4597383 Mobile: 0212341294 Email: info@kindhands.co.nz

Disability A Matter of Perception

10

Arthritis

A leading cause of disability

A

rthritis is a painful and debilitating condition for anyone but for those who are trying to earn a living the difficulties can be even greater.

They may have problems getting time off work to go to specialist appointments.

Workers may have to use up all their sick leave or take leave without pay when coping with a ‘flare’. Sometimes it’s the physical demands of the work itself (standing or lifting) that are difficult. Or it may be the negative perceptions of work colleagues that add to the stress.

On the other hand, flexible hours, modified equipment, understanding colleagues and managers who take a positive lead can go a long way towards making sure that workplaces are accessible and welcoming for people with arthritis.

At least 670,000 New Zealanders are affected by arthritis and 49 percent of those are of working age.

Musculoskeletal disorders like arthritis

are among the leading causes of disability and represent a huge financial burden to the New Zealand health system and the economy.

Arthritis New Zealand provides information and support for people with all forms of arthritis, at any age. While there is no cure, most people can live fulfilling and productive lives with early intervention, good treatment and selfmanagement tools.

We also advocate for all those affected by arthritis, including families, and provide training for health professionals through workshops and seminars.

Arthritis educators are available on 0800 663 463 during business hours to give advice on treatments, pain management, employment issues and access to other support services.

There is an active arthritis support group in Whangarei and water-based exercise classes are run independently at the Aquatic Centre.

Contact Arthritis New Zealand Phone 0800 663 463 Website www.arthritis.org.nz Visit our Facebook page Email info@arthritis.org.nz

What Makes a Good Life?

11

Noreen Moorhouse

N

oreen Moorhouse, of Otangarei, has plenty of experience with living with arthritis.

She was first diagnosed when she was 19 years old and pregnant with her first child.

She is now almost 90.

And now she has three forms of arthritis: osteoarthritis, gout and polymyalgia. All involve living with pain and inflammation.

Noreen says she has learned over the years to go with the flow in managing her symptoms.

“I wake up and think, what can I get done today. Some days it’s not possible to do much, but I think it’s important to always try and do something.’’

Osteoarthritis is the most common form of arthritis, affecting millions of people worldwide. The protective cartilage that cushions the ends of bones in joints is damaged and commonly affects hands, knees, hips and spine.

For Noreen, the disease started in her knee and over the years this progressed to both knees so that she needed to use walking sticks from quite a young age.

Despite being told she needed knee replacements in her late 40s, she finally got the operations in her late 60s.

She has also had an operation to insert plates to correct arthritic damage to her spine.

Noreen says any form of arthritis involves pain management, and there can be some relief using diet or medication.

“Living with constant pain is the hardest

for people to accept and so mental health support is vital,’’ she says.

Her most useful appliance is an electric can opener and when her daughter arrives with groceries, she always loosens the lids on jars and pops them in the fridge.

“These are the sort of concessions that need to be made. And if I get stuck opening something I can always ask one of my lovely neighbours,’’ she says.

Noreen says the monthly arthritis support group she belongs to has been invaluable and is attended by people from all walks of life.

She has enjoyed being part of a network of people who meet to chat and “have a laughing moan”.

“It does cheer you up and we can share our experiences and any helpful advice.”

Noreen says group members have formed a buddy system where they provide support for each other to attend medical or specialist appointments.

“It’s so helpful to have someone beside you who understands what you are going through and can help you get answers to your questions.’’

For Noreen, a good life is making the most of what can be done each day.

“If you can do it, do it because the less you do, the less you can do.’’

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Disability A Matter of Perception

12

Welcome to the

Blind Low Vision NZ

Life without limits Kahore e Mutunga ki te Ora

B

lind Low Vision NZ is here to help.

If you, a family member or friend, is blind or experiencing sight loss, we can provide the support needed to help you face your future with confidence.

To become a client, you can register online or over the phone. Once you’re set up, you’ll be able to get a wide range of support.

These supports may include: Library: We have collections and services available through the Blind Low Vision NZ library, including the BookLink digital lending and reading service, as well as how to join.

Getting Around: We’re here to help you stay independent when getting around,

whether with a cane or guide dog, on public or private transport.

Daily Life: We can help you adjust to sight loss, be independent, make the most of technology, and live a life without limits.

Cultural support: We have cultural support for Māori and Pacific clients and their whanau, family and friends.

Deafblind services: If you’re experiencing dual sensory loss, we’re here to help support you - wherever in New Zealand you are.

Children and Youth: We offer a range of support for children who are blind or low vision and seek to empower our young clients to live independently and fulfil their potential. And if you’re the parent of a child who is blind or low vision, we’re here to help you too.

Businesses and Professionals: We offer a range of services to help businesses and educational institutions. If you employ or teach a person who is blind or has low vision or want to improve your accessibility, we can help.

We look forward to meeting you and helping with your vision needs.

You will find us at: 277 Kamo Road, Whangarei Phone 09 437 1199 Office hours Monday, Tuesday, Thursday and Friday 9am to 2pm.

If you have any questions, call our team on 0800 24 33 33 or email generalenquiries@blindlowvision.org.nz.

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What Makes a Good Life?

13

A life of music but not colour

I

magine if you couldn’t picture the colour of daffodils or the colour of the ocean.

Kerry Greenfield, 55, is totally blind.

She has an eye condition called RFL or retrolental fibroplasia. She was born prematurely and given too much oxygen which caused her blindness.

“I am totally blind, but have light

perception, which comes in handy, as I can tell if I am in a built-up or open area, by the light and sound changes.

“I am unable to imagine colours though, as I think a person would need to have had sight in the past, in order to be able to understand exactly what colours are.”

While she can’t imagine colours, her life

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is joyful and music plays a big part in that.

She plays the electric accordion and in nonpandemic times you can often find Kerry busking in Whangarei.

“The thing I like about music is the fact that I can listen to whatever style matches the mood I am in at the time.

“Also, I’m always happy to hear when people around me enjoy the music I play while I’m busking or playing at resthomes.”

Kerry has recorded two albums and plans to record a gospel album this year.

A hobby she has is knitting – she’s knitted a lot over the years – scarfs, hats and cardigans.

“I am able to read the knitting patterns in braille and can usually follow them. Some I braille myself. Others I have obtained from email lists.”

She encourages people living with sight loss to give Blind Low Vision NZ a call for support.

“Ask them whatever questions you have.

Blind Low Vision NZ have a wide range of services which can help.”

Most recently Kerry has used their adaptive technology support service to help her set up her iPhone 8 and use Dropbox on her PC. If you or someone you know could benefit from Blind Low Vision NZ’s vision rehabilitation services, call 0800 24 33 33 or email info@blindlowvision.org.nz

EYE CENTRE WE ALS O CONSU LT IN KERIKE RI

PRIMECARE Eye Specialists:

David Dalziel and Andrew Watts Phone: 09-972 7022 12 Kensington Ave, Whangarei Email: pceyes@xtra.co.nz Website: www.bit.do/EyeCentre

Help is only a phone call away 0800 11 0030

Disability A Matter of Perception

14

The Brain Injury Association

B

rain Injury….is often called the “silent epidemic” and referred to as a “hidden injury” as more often than not there are no outwardly visible changes to a person after a brain injury.

It is reported that a person receives a brain injury every 15 minutes. Brain Injury is the leading cause of death and disability in NZ. A brain injury can have life changing results for both the injured person and their family / whanau.

The causes of brain injury are many and varied, most are due to falls 38%, followed by crashes and assaults. It can be very difficult to predict what the long-term outlook might be as every person; every injury and every recovery is different. People with brain injuries are often seen as lazy or hard to get along with by family and friends.

Their personality may have changed, they can no longer process information quickly and make poor decisions. Fatigue affects over 70% of people with brain injury and would be the leading reason why people struggle to work and enjoy leisure activities.

The Brain Injury Association Northland provides a safe, barrier free service to support and assist people understand and navigate through the confusing aftermath of an injury, this includes both the individual with the injury, as well as the family and supporters.

Increasing understanding will directly prevent unnecessary injuries and minimise the extent of an injury where protection and good sense prevail.

When people understand the fear can be diminished. Education brings understanding and enables people living with brain injury

to better communicate who they are with the world around them.

Currently the organisation has one Liaison Officer – Vikki Herdman. We cover from Wellsford to Cape Reinga. There are monthly support groups in several areas in Northland. We support clients to attend appointments and liaise with services they require.

We are also very involved with injury prevention and road safety education.

There are 1440 minutes in a day…

But it only takes one for something life changing to happen.

Contact details: Address 98 Cairnfield Road, Whangarei Postal Po Box 4001, Kamo.

Phone 09 459 5013 Email northland@brain-injury.org.nz Web www.brain-injury.org.nz

Change nothing & nothing changes!

Not much in life stays the same… apart from the need to pay taxes of course! But change can be good, especially when it brings new skills and experience.

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What Makes a Good Life?

15

Monique Bradley

I

was 18, had graduated high school as a prefect in year 13, started university where I was lucky enough to receive a scholarship, completed my first year where I was focused on getting as many good grades as possible and spent most of my spare time outside surrounded by horses.

It was in January during Uni break when life as I knew it came to a rather quick halt. I had been cantering down the beach when my horse broke both her front legs, rolling on me. Thanks to the Northland Rescue Helicopter I made it to Whangarei Hospital quickly where they found that I had sustained a brain bleed and fractured spine… an unlucky yet very lucky outcome as I know things could have been much worse.

I am fortunate to have no recollection off the accident itself or the couple of days after it. My first memories are a bit like a foggy dream, waking up in hospital and asking my mum where I was (something that took a good amount of time for me to fully comprehend) and if I came off a horse.

Previously, simple tasks such as walking around, thinking or staying awake for 15 minutes were now a struggle and the next month saw me move from the Hospital to ABI Rehabilitation in Auckland. I lived and took part in appointments with their nurses, Occupational Therapist, Speech and Language Therapist and Physiotherapist undergoing a series of tests proving that I was able to function well enough to return home. On returning home I had an unsuccessful attempt at returning to

university, after which I spent a lot of time in bed, frustrated, confused and struggled to make appropriate choices for myself which eventually led to quite the mental health battle which was all part of my recovery 6 months post-accident I managed to slowly return to riding, this was something I put lots of thought into but simply couldn’t give up- you only get to live once so you might as well do what you love. My horses have been a huge part of my rehab and recovery, so I have no doubts about

making this decision.

Completing University also became achievable with the help of the amazing staff and some much-appreciated disability support. I would catch a taxi to and from Uni as I was unable to drive due to the injury, used a writer in lectures and sat exams in a room aloneoften wearing ear plugs and sunglasses.

Fatigue seemed to rule my life, the worse the fatigue, the worse the cognitive, behavioral, mood and visual effects were.

Fatigue has definitely haunted me; however, I feel like a key part in my recovery has been learning how to manage this. It is still with me now but to a much lesser degree.

Thanks to all those who have supported me through the recovery I can now work 4 days a week teaching, ride and enjoy life while keeping the fatigue in check. I have enjoyed giving back and supporting the Northland Rescue Helicopter 2019 appeal and The Northland Brain Injury Association.

The Northland Brain Injury Association have had my back if I needed support throughout the whole journey as they do with many others as they support, educate, provide assistance plus so much more. They are there for all Brain injured individuals, whanau and the general public who require support to understand or would simply like to find out more about Brain injuries. I look forward to continuing to help these services that support those in need. I would like to share my experience and be a support person to any others that have sustained and are living with the effects of a TBI.

AGE CONCERN KAITAIA & DISTRICT Working together to promote quality of life for older people, kuia and kaumatua We offer a free confidential service

We work with older people, their family/whanau and their carers so that they can receive the information, support and advocacy they need to be happy, healthy and safe.

See Fraud Hurts documentary online - go to www.cffc.org.nz/building-wealthy-lives/frauds-and-scams/ Age Concern Kaitaia & District – Elder Abuse Response Service – for all of Northland Far North District Office: 16 Commerce Street, Kaitaia Tel: 09 408 2997 • ageconcernkta@xtra.co.nz

Whangarei District Office: 98 Cairnfield Road, Otangarei Tel: 09 459 1928 or 027 598 5376

Kaipara District Office: 61 Victoria Street, Dargaville Tel: 027 598 5376

Disability A Matter of Perception

16

CCS Disability Action About Us Mo Matou

C

CS Disability Action is the largest pan-disability support and advocacy organisation in New Zealand. We have a long, proud history of working in partnership with disabled people, families and whānau to provide dedicated and flexible support services.

As well as creating individually tailored supports, we work in communities to identify and remove barriers so that all people can lead positive and connected lives. We also advocate for local and national policies that ensure that disabled people’s rights are upheld.

What we offer Our model is based on putting people first and finding ways to support the choices they want to make and the lives that they want for themselves.

At CCS Disability Action, we believe that all people have the right to be included in their communities and enjoy the same rights and opportunities that every New Zealander might expect.

These services include: • A range of respite options designed to provide a break for families and a positive and rewarding experience for your child.

• Community Support Coordinators who provide advocacy and support to remove any barriers to accessing the quality education of your choice.

• A dedicated youth team who can

community-based support and support people to transition from residential care into their own home.

• A Karanga Maha group who support people of Māori and Pacific Island descent to engage with their own cultural identities and develop personal leadership.

• Administering the mobility parking service in Northland, supporting people to park in accessible spaces in the community.

•

• •

•

offer tailored support with education, employment and can connect you with friends, youth groups and your community.

Support to access paid and sustainable employment by providing individualised support for potential employees and employers.

Ongoing vocational support service to assist disabled people to participate in training, work or community activities.

Providing ongoing support, information and options for young people preparing to leave school for further study or employment.

Working in partnership with disabled people to support them to lead independent lives. We provide

CCS Disability Action Northland Address 291 Kamo Road, Whangarei Phone (09) 437 1899 Freephone 08000 227 2255 Email Northland@ccsDisabilityAction.org.nz Web www.ccsDisabilityAction.org.nz

Know now Download the NZ Herald app.

nzherald.co.nz

What Makes a Good Life?

17

Sue’s story

S

ue lives in Whangarei and has been supported by CCS Disability Action for many years.

“CCS Disability Action have been my rock with anything I’ve needed over the years.

I have Asperger’s and I find it hard to do things with new people, because people often don’t understand me, and I find that I don’t understand them. To find people who I connect with makes an incredible difference,” she explains.

Sue’s daughter Dani was born with a serious health condition that affected her for her entire life.

“I was really blessed to be her mum,” said Sue. Tragically, Sue lost her beloved daughter, when she was just 24 years old.

Sue typically retreats when things are tough but knows that isolation causes her to spiral into anxiety and depression. Kevin was there to listen as she began the difficult process of healing.

“There’s not a day that doesn’t go by that I don’t want to be with Dani. I’d give anything to go back. But I can’t do that.

And now there are other things in my life that make me happy.”

Sue is now supported by Coordinator Marilyn.

“When I came on board Sue had been referred to Sailability, which creates opportunities for disabled people to try sailing, but she had no way of travelling to get to the yacht club in the Bay of Islands.

I organised for a Support Worker to travel with Sue to get there. Honestly, she hasn’t

looked back since!”

Sailing was something Sue enjoyed as a child and as soon as she was back on the water she was absolutely hooked.

“We explored the Bay of Islands and Chris Sharp – who is a former Paralympian – made me feel welcome. It was awesome.”

Sue began attending every week refamiliarising herself with the craft.

When Chris suggested Sue join him and two others to complete in the 2020 Hansa Class National Regatta in Lower Hutt, she was up for the challenge.

Their expectations for a place were low, given the group’s lack of experience. “It was my first ever competition. In the end I was part of a pair that won the 303 Doubles and I won the Ability Class. It felt really awesome.”

Sue’s love of sailing has had a profound impact on her life and how she sees herself. “Sailing has shown me that I can do anything I want to do,” she says.

Unfortunately, just as Sue’s world was beginning to expand, it became very small when the Level 4, COVID-19 lockdown

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was announced.

“I had just found my ‘normal’ and Coronavirus happened. It did make me feel very uncertain and anxious,” she explains.

Sue felt that regular contact during the pandemic was essential, to ensure she did not become isolated again.

Sue and Marilyn continued to meet regularly throughout lockdown enabling Sue to keep her eye on the future – and have a much-needed laugh too.

“Sue’s a phenomenal person – so I’m really pleased to have been able to play a part in her journey,” says Marilyn.

Sue has also appreciated the opportunity to continue to connect. “Meeting up with Marilyn has helped me so much during this time. It is a little hard to think about what the future might look like, but I do know that nothing will keep me away from sailing.”

09 430 3505

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Disability A Matter of Perception

Deaf Aotearoa

Youth Engaging with Deaf youth and promoting positive Deaf identity and leadership in young Deaf people.

Hauora A service focused on improving lives and supporting independence, including coordinating access to other services and assistive technology.

Employment A specialist employment service for deaf and hard of hearing people, offering a transition service for school leavers, preemployment support, job-seeking, and supporting employers of Deaf staff.

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First Signs Connecting families who have a deaf or hard of hearing child aged 0-5, with New Zealand Sign Language, the Deaf community and Deaf culture.

NZSL Promotion This includes Adult Community Education for the Deaf community, tailored Deaf Awareness and NZSL courses for businesses and organisations. NZSL is also particularly promoted during New Zealand Sign Language Week.

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eaf Aotearoa is the Disabled Persons’ Organisation representing the voice of Deaf people, and the national service provider for Deaf people in New Zealand. It is also the New Zealandrepresentative member organisation of the World Federation of the Deaf.

Deaf Aotearoa’s services are available from 13 offices nationwide, including Northland. These services include:

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NZSL Week New Zealand Sign Language Week is held each year in May. However, due to the Covid-19 crisis this year’s NZSL Week is being postponed and will now be celebrated from 21st – 27th September 2020. This week in September is also the International Week of the Deaf and the 23rd September is the United Nations International Day of Sign Languages. iSign iSign is a nationwide New Zealand Sign Language interpreter booking service.

Deaf Aotearoa also works to advocate for the Deaf community, engaging with government departments and other agencies to improve access for Deaf people.

deaf.org.nz

Deaf Aotearoa Address 1A Deveron Street, Whangarei Phone 437 2022, Glennis 021 641 178 Web www.deaf.org.nz Email national@deaf.org.nz Open Monday to Thursday 9am-4pm and Friday by appointment

How can we help you?

See pages 46 & 47 for details

What Makes a Good Life?

19

Alana Best

W

hat makes a good life for Deaf people? Access to good communication.

My name s Alana Best and I am profoundly Deaf. I am a NZ Sign Language Tutor for Deaf Education (NZ) and studying post-diploma to be a teacher.

Since the invention of the internet and the cell phone (first texting and then the face to face access) technology has become a must have for the Deaf community and has made an enormous difference to the lives of Deaf. We can keep in contact with each other and are able to access information regardless where we are and who we are talking to. Internet enables us to book an appointment, call our doctors and families, friends and to use interpreters online to communicate with someone else and be able to order online without frustrations.

As time goes on, we have new apps, new websites, and new ways of doing things online, this makes our day to day living and communication easier with far more positive outcomes. I use different video calling apps to teach sign language to my students and their teachers who live in isolated areas but also the internet was invaluable during lockdown.

This year, New Zealand entered its first ever national lockdown where everyone had to stay at home and businesses shifted to online access only. The impact of this is profound for everyone and the Deaf community is not immune from this, however we simply moved online to continue our community networking

and were able to access all the most important announcements and information via interpreters and subtitling on National TV. We were not left not knowing or understanding what was happening.

‘During this time Deaf clubs nationally set up club nights by using Zoom. Zoom is a video conference online platform. For a couple of Deaf clubs, they successfully held club nights with up to 100 people online so they could still socialise as usual. (Zoom can have up to 10,000 people at one time.)

Coronavirus (COVID-19) took hold of the world with many countries in lockdowns and this brought about global conversations and discussions right throughout the world.

Due to technology we were able to be part of this world awareness and gain new knowledge to better prepare ourselves. We were not severely isolated as has often been

the case in the past because we have the internet and reliable technology.

Deaf Aotearoa closely monitored what was going on and strived to keep all the important updates translated to New Zealand Sign Language therefore offering information equally to us, the same as all other NZ citizens. Because of this, we kept positive and diligent in keeping our community safe. They also provide equipment subsidies for such things as baby monitors, doorbells and fire detectors.

New Zealand Sign Language Week (held annually in May each year) has been postponed until September this year.

We will be able to provide our NZ Sign Language taster classes and celebrate our NZ Sign Language alongside International Week of the Deaf. This year has brought us closer with our international communities so it will be extra special this year. If you have not registered yet, please do now as the Taster classes will book out very fast.

How does it work?

For interpreter bookings and queries: 0800 934 683 FREE TXT: 3359 bookings@isign.co.nz www.isign.co.nz

iSign interpreting services are provided in every setting, including: • health • disability support services • government agencies, eg: Work & Income, ACC • schools • legal appointments • work places • conferences • social events, eg: family reunions, churches, funerals, tangi and weddings.

Disability A Matter of Perception

20

Northland Down Syndrome Support Group Charitable Trust

N

orthland Down Syndrome Support Group is a charitable trust for people with Down syndrome, their whanau and their teachers. Run by parents of children with Down syndrome of all ages, we support, connect, advise, advocate, provide resources and have fun! We have a range of services and regular get-togethers:

Whanau with a recent diagnosis of Down syndrome A diagnosis of Down syndrome - whether during pregnancy or at birth - can be a shock. We are available to chat to if you have had a recent diagnosis. We are non-judgemental, supportive listeners.

We can help you begin to understand the implications that having a child with Down

syndrome may have for your family and put you in touch with other whanau if you wish.

School-age children with Down syndrome Our whanau with children aged 0 - 16 years old meet up at WAGS (Whangarei Academy of Gymnastics) at 11am on the third Sunday of each month. Supported by a qualified coach, all the children - siblings included play safely on the gym equipment, having fun, being physical and making friends.

Bring lunch, chat to other parents/carers, and enjoy playing with your kids too.

Youth Group Our older teens and adults with Down syndrome meet up every fortnight to go

bowling, do arts and crafts, go out for a meal, and many other activities - a great opportunity to develop independence, meet up with friends and have fun!

Schools – Teachers, Teacher Aides/ESWs and SENCOs/LSCOs To support schools working with learners with Down syndrome, we provide professional development days, individualised support and advice in-school (including the development of learning programmes tailored to a student’s needs), networking opportunities for teachers of children with Down syndrome to share good practice, and IEP support. We also have a wide range of educational books, reading programmes, and numeracy (Numicon) resources to loan.

We work with all levels of education – from ECE to tertiary/apprenticeship.

We are affiliated with the New Zealand Down Syndrome Association and proud to be supported by COGS and the Lottery Community Grants Board.

General enquiries 0210 814 3744 Email ksadgrove@xtra.co.nz Schools enquiries 021 0822 4584 Email NorthlandDSSG@gmail.com Web www.NorthlandDSSG.org Facebook Northland Down Syndrome Support Group

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What Makes a Good Life?

21

GreatM8’s

– a social group for young people living with a disability and or a health condition

T

he group started in February 2013 and has been meeting fortnightly for 7 years. It stemmed from a small group of like-minded parents from the Down Syndrome Support Group, seeing the need for their young people to meet and socialise and saying “let’s do this”.

Social isolation can lead to depression in these young people, so it is very important to have these connections and friendships.

The group is all about having fun and hanging out with your mates. Some of the activities the young people partake in are:

10 pin bowling (a big favourite), glow in the dark mini golf, movies, eating out together, arts n crafts, games nights, airbrushing at the Northland Arts Centre and many more........

One of our recent favourite nights for the GreatM8’s group was a St Patricks themed dinner, which was hosted by the Whangarei Hatea Lions Club. The Lions organised games and fun activities for everyone, including the parents. We are truly grateful for the support that they have provided the GreatM8’s and a fun night was had by all.

The group doesn’t just benefit the young people; it is there for the parents that come along too. They also get to socialise and meet other parents.

The young people have their own Facebook page where they can keep in touch and up to date with what the next fortnight’s activity is. Due to recent events and people being in lockdown, the group have moved to having weekly video chats to keep in touch with each other.

At different stages of life the answer for “what makes a good life” can be different.

But I reckon to have friends around you who can understand the way you do things would make your life better.

“Spending time with my family” “Having all my favourite things around me” ‘Being able to try new things, see new places” My life is good because I hang out with my friends and whanau. Dinners with them, 10 Pin bowling, movies – as quoted by Rory Guiney

Proud supporters

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Disability A Matter of Perception

22

What Makes a Good Life!

I

t isn’t easy to be objective when life and every day issues can be so demanding and overwhelming.

For a person with Epilepsy sorting through every day issues can be exhausting, leaving little time or energy for others matters.

But if you pause and reflect, there are people and things we can be grateful for in life. These are the things that can give you a sense of perspective, a sense of balance, as well as a hope for the future.

So, what is this essence of wellbeing that makes for a good life? That shelters us from this ever-changing environment.

In terms of wellbeing, the ultimate reality for some is Wairua (spiritual). The very source of existence for wellbeing and life.

Wairua is intrinsically linked to every aspect of our lives. It gives one a sense of balance and wholeness. Wairua causes us to perceive things through our senses, sight, hearing, smell. We become intuitive, having the understanding as to what our needs are for wellbeing, without others telling us what they think it is.

For a person living with the condition of Epilepsy, wellness and balance in every aspect of Lifestyle is important when we consider the way Epilepsy and treatment affects Health wellbeing and daily life.

Just as important is the quality of our relationships as whanau and with the wider community. Everyone copes differently and may have varying levels of need, including

whanau or caregivers.

Working with a holistic approach is paramount in addressing the wider impact that Epilepsy can have on relationships within whanau extended whanau friends and the wider community.

People living with Epilepsy, Whanau, Friends, and Caregivers can all feel stress at times. Stress is a normal part of life, however long term stress can have a significant impact for people living with Epilepsy, leading to increased anxiety and depression. Stress can trigger Seizures.

Epilepsy may affect physical aspects such as Sleep, Exercise, Nutrition.

Sleep and Epilepsy are closely connected. Having the right amount of sleep can affect the timing, number and severity of Seizures. Inadequate sleep is a common seizure trigger for many people with Epilepsy.

Studies show eating whole foods low in sugar, limiting alcohol and processed foods have a positive impact on seizure control, depression and anxiety.

Gathering Kai moana or kai whenua can have a significant positive impact on physical and whanau wellbeing.

Exercise has proven health benefits in reducing stress levels, improving mood, sleep and overall Health. Just Taking a breath of fresh air, going for a brisk walk can boost endorphins, (the good hormones) that improve mood and lower stress and mild depression.

If it’s important to you, you’ll find it in northeradvocate.co.nz

The combination of Exercise, Solitude, Quiet and beauty of the natural world can be calming and restorative. Taking Time, spending time in Nature embracing the natural elements through our senses brings us out of ourselves. Going for a walk on the beach can help reduce feelings of anxiety and stress. Staring at the ocean can change our brain waves into a mild resting state.

So this is what makes for a Good Life!

The very presence of being! So let’s get back to the basics and acknowledge that God given gift of wairua, that we can experience and exercise the innate resources within us that bring balance and maturity in discerning and making the right choices and decisions to achieve and maintain our own health and wellbeing.

Address Level one upstairs Civic Arcade, 37 Bank Street Whangarei 0110 Postal P.O Box 1074, Waikato Mail Centre Hamilton 3240 Phone/Fax (09) 438 5498 0800 374 537 Hours 8.30am – 4.30pm Monday - Friday Email northland@epilepsy.org.nz Web www.epilepsy.org.nz

What Makes a Good Life?

23

Epilepsy Support Group

S

o, “What makes a Good Life for you?”

What better opportunity than to share this question with our Whangarei Epilepsy Support Group who meet on the first Tuesday of every month at the Epilepsy temporary rooms in the Civic Arcade.

In answer to my question I am met with a barrage of answers from the Support Group members. Positivity, warmth, humour, fun, laughter, balance and stability. Just being healthy and happy and being able to lead a stress-free life, to have a positive meaningful influence in with our children/grandchildren.

For many of our Support Group, keeping active with social connections and relationships are important. For some it may include going to the RSA, others it may be attending the Literacy Group, or free Healthy Lifestyle Courses. Keeping the balance and social connection is a priority for many who participate in sharing at Support Group.

It gives them a sense of I am not alone, “there are others going through the same challenges as me”.

So, what are these challenges and coping strategies that are needed to keep life as normal as possible. For some it may be memory loss. There may be many reasons for this, including types of seizures, the effects of medication, age.

This may mean having a To Do List, being organised and planning for the day with reminders and appointments. “Even then I sometimes forget to write down things to remind myself”, says Bev. “If I am asked in a conversation, do you remember? I say No,

remind me!” These memory problems can sometimes have an impact on your partner in a conversation as I often forget and tend to repeat myself and he’s heard it all before.

Developing coping strategies can be ongoing for not just the person with Epilepsy but for the partner as well as whanau/family.

Strategies like stepping back and finding that space to reflect and think in a way that respects and restores the confidence of the person with Epilepsy.

Staying safe while being physically active is always a priority. Most activities are safe for people with Epilepsy even if their seizures aren’t fully controlled. When going for walks, exercising with a buddy can be helpful, being mindful of busy foot traffic,

bikes or scooters on footpaths. Wearing a Medic Alert Bracelet is also helpful.

“Just waking up and being happy and feeling secure. Enjoying quality whanau time. You can expect to have good days and not so good days and knowing that what you are going through, is common and natural”, says Ashley.

Changes that seem challenging or impossible now will eventually become second nature Take on small changes one at a time and keep moving forward. In saying that don’t hesitate to ask for help.

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Disability A Matter of Perception

24

Huntington’s Disease Association

T

he Huntington’s Disease Association (Auckland) Inc is currently working with 900+ people living with symptoms, or at risk of developing symptoms, of Huntington’s Disease in the Auckland and Northland regions. With the hard work and dedication of the Manager, Jo Dysart and Cheenee Mandawe (Support worker), they support the carers, family members, GP’s, medical specialists and other agencies to support people with Huntington’s.

the clients, strategising and solution focused problem solving, either working individually with clients or in groups.

Family Liaison Service Our professional staff are Huntington’s Disease (HD) specialists who help families and professionals respond to the unique challenges of HD. The clients of the Individual and Family Services programme are the person living with HD, their caregivers and family members including people at risk.

What is Huntington’s disease?

Huntington’s disease is a hereditary neurodegenerative disorder caused by and expunction in the IT-15, or Huntington’s gene on chromosome 4.

Each child of an affected parent has a 50% chance of developing the disease.

Most people with HD develop symptoms in their forties and fifties although around 10% of patients have onset of symptoms before age 20 and 10% have onset after age 60.

Support Service The staff provide services which include: • Assessing people’s needs through one to one consultation’s • Educating clients about HD • Giving information about community services • Finding sources of support • Facilitating appropriate referrals and then following up.

The service can involve setting goals with

Education and Awareness For over 30 years we have been providing information about Huntington’s Disease to those living with HD, their carer’s as well as the support agencies and medical professionals. Information ranges from symptomology of HD to how to manage the symptoms.

Who Gets It? Huntington’s is a genetic disorder. About one in every 10,000 people has HD. It is not discriminative can affect both sexes and any race. Primarily, HD affects adults.

Symptoms usually appear between the ages of 30 and 45 but there is Juvenile HD which appears in children and late onset HD in adults in their 60s.

What are the Symptoms?

There are three main types of symptoms in Huntington’s disease: physical symptoms including involuntary movements and diminished coordination; emotional symptoms including depression, irritability and obsessiveness; and cognitive symptoms, including loss of ability to recall information, loss of attention and difficulty with decision making.

Liaison We are privileged to work alongside clinical experts and DHB’s offering a inter-disciplinary team approach to the individuals and family/whanau affected by HD. Along with this we have tight links with the Auckland University Centre for Brain Research and our Patron Sir Richard Faull. We therefore have ongoing updates on clinical research and research to help develop treatments and one day, a cure.

Contact Details Address PO Box 1618, Sandringham Auckland 1351 Phone 09 815 9703 Mobile 027 432 8255 Email huntingtonsakld@xtra.co.nz Web hdauckland.com

Need a lift?

Get on board the Total Mobility scheme We make it easier for people who can’t drive to get out and about in Whangarei.

Find out if you’re eligible to receive a 50% subsidy (up to a max of $30) on door-to-door transport with one of our approved operators.

Find out more 0800 002 004 or nrc.govt.nz/totalmobility

What Makes a Good Life?

25

THE HD BIG DAY OUT

E

very year, the Huntington’s Disease Association holds The HD Big Day Out, an annual event in the public that provides for the HD community. It is a time for them to spend a day out with their family, friends and whanau while being surrounded by people who also share something in common. The previous HD Big Day Out in May 2019 was held at the Auckland Zoo, where those that attended were given free entrance to the animal attractions and then they all came together in the domes to have afternoon tea and hear from our patron, Sir Richard Faull, who spoke about the latest updates in HD research. We also had an announcement from Cat Martin, the Executive Director of HDYO, who flew in from Scotland to announce the first International HD Youth Congress, and we also had a

special performance from the TawagAwit Glen Eden choir. We had a great turn out and it seemed to be a fun day for all.

Within the HD community, we have many families with young children. The HD Big Day Out provides a day where these families can go out and do something fun together without the worry of spending.

In other cases, some of our people do not have others consistently in their life, so we always encourage everyone in the HD community to attend so they feel welcomed and feel a part of something.

The HDA believes that this is what makes a good life - a sense of community and belonging. Despite the struggles our people face, this event is a reminder that there are people who share something in common and that they are not alone.

B BUS BETTER B WITH W Visit BeeCard.co.nz for more details

Our HD Big Day Out has always been one of the highlights of our community.

We get a lot of positive feedback from the families that attend, saying that it was nice to take a trip out and spend some time not worrying over things. It is also a day that many of our people remember for a very long time. That is why we always strive to organise one at least once a year. Such events like these would not be possible without the generosity of the community and the funders. It is thanks to them and everyone involved that we are able to provide a space of belonging where people can feel a part of something and positive memories can be made.

GETTING STARTED Order online and have your Bee Card posted to you, pick one up from the Rose Street bus terminal or from the regional council’s Water Street offices.

You’ll need to top up your card to get started.

WITH BEE CARD YOU CAN Register to: • Check your balance, top up and set up Auto Top Up online • Protect your balance if your card’s lost or stolen • Load concessions - no need to show ID

Disability A Matter of Perception

26

Muscular Dystrophy About Us The Muscular Dystrophy Association of New Zealand Inc. (MDANZ) began in the late 1950s as a support group for families affected by muscular dystrophy. Since then, MDANZ has broadened its scope to include many other neuromuscular conditions.

We have four regional branches Northern, Central, Canterbury and Southern - that are supported by the national office based in Auckland. MDANZ supports individuals, families and whanau by providing specialist information, practical resources, personalised support and Fieldworker services, social networks, campaigns for public awareness and advocacy. And through our research trust, we work to improve care standards and facilitate access to potential treatments for neuromuscular conditions.

Our organisation is a registered charity and we rely almost entirely on voluntary donations from the general public, trusts and other businesses/organisations to continue our work.

What are Neuromuscular Conditions?

Neuromuscular condition is a broad umbrella term that describes a variety of muscle disorders. The conditions covered

by MDANZ are rare and mostly genetic.

Progressive muscle wasting leads to loss of mobility and independence, and there are often major impacts on organ systems, which can result in early loss of life.

Symptoms can appear at birth or for others

isolation by linking people to others with shared experience.

Community education may include talking with teachers, health professionals or disability support staff to improve their understanding of progressive neuromuscular conditions, which enables them to provide even better services and supports for our members.

not until much later in life. These conditions can be unpredictable and there are limited treatment options.

Fieldwork Service Our fieldworkers work in the community to provide personalised support and education, in the area of rare neuromuscular conditions covered

by MDANZ. Personalised support may include supporting through diagnosis, walking alongside during times of grief and change, offering information and advice about conditions, facilitating service access through referrals or advocacy, or reducing

ENROL NOW FOR SEMESTER 2 Up to 40 NorthTec programmes are now currently fees-free in 2020.

They’re available to all learners for the rest of this year – so there’s never been a better time to retrain, upskill, or follow your dreams.

Build yourself a better future by studying fees-free with NorthTec and get your career on track.

Visit our website and check out your options: www.northtec.ac.nz/feesfree

p: 0800 162 100 e: study@northtec.ac.nz www.northtec.ac.nz *Terms & Conditions apply

National Contact Details MDANZ National Branch 0800 800 337 Email info@mda.org.nz Website www.mda.org.nz Facebook www.facebook.com/ MDANationalOffice Northern Branch Contact Fieldworker Northern Branch Rachel Woodworth Phone 0800 636 787 | 021 704 227 Hours of work Mon, Tues & Thurs 9.00am - 5.30pm/Friday 9am –3.30pm Email rachel@mdn.org.nz

What Makes a Good Life?

27

Adrienne’s Story

A

drienne was born on 7 May 1954.

Growing up in Papatoetoe, Adrienne attended Papatoetoe High School gaining University Entrance (accredited) and then took a one year Senior Business Course at, what was then, Manukau Technical Institute. In 1971, her first job was a secretary to the General Manager of the Valuation Department & her pay was the princely sum of $20 per week!

Adrienne then had a number of secretarial/administration jobs interspersed with time off for her 2 small sons; now 41 & 38. The older of the two lives in Ireland & has two children of his own so she is a proud Grandma! Adrienne has been fortunate and has had several trips to Ireland though unfortunately plans to go again this year have had to be postponed due to COVID-19.

Adrienne’s children were 5 & 4 when her marriage broke up and was by herself for a number of years. She worked part time as a Parish Secretary for her local church, a job that fitted in nicely with the boys schooling.

She then met and subsequently married John 22 years ago. In 1997 a change of scenery saw them move to Whangarei.

In 2001 Adrienne was diagnosed with Myotonic Dystrophy. She had started stumbling and sometimes falling but thought the problem was her knees as it seemed that they would collapse. Following a referral to a neurologist, a series of tests confirmed her initial diagnosis.

Although Adrienne was told, at the time

that it was “progressive but not significantly so”; she thought then that what doctors called “significant” and what she called “significant” were probably two different things. Time has proved this to be true!

She has since had two unfortunate falls resulting in broken bones & hospitalisation.

She now mobilises using a wheelchair and is increasingly dependent upon John which she struggles with at times and wishes there was a treatment; ideally a cure!

Adrienne studied further through the Open Polytechnic of New Zealand and graduated four years later with a Bachelor of Business. Adrienne now works in a voluntary capacity as a Financial Mentor (Budget Adviser) two days a week; probably the best job she has ever had.

What makes a good life for Adrienne? well apart from working with clients, socialising with work colleagues, in her spare time she likes to keep occupied at home reading, doing adult colouring & playing word games on her tablet. She enjoys knitting and has knitted two scarfs for her son’s partner in Ireland for Christmas.

• Scooters • Mobility aids • Bathroom aids • Competitive pricing

For all your Mobility & Daily Living Aid Requirements 84D Kerikeri Road, Kerikeri Across from the trade entrance of Bunnings Ph: 09 407 6701 or 027 4468545 email: kerimobility@yahoo.co.nz www.kerimobility.co.nz

Disability A Matter of Perception

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How Parafed Northland is Growing Inclusive Sport in Northland

W

hat could be better than sailing in the beautiful Bay of Islands on a Sunday morning or catching up with friends and family while discovering the local cycle and walkways in your local area?

Parafed Northland is here to give inclusive sport and recreation opportunities to those with physical disabilities who enjoy being active and getting involved in sport and recreation in beautiful Northland.

Part of Parafed’s work is to link with local sporting clubs and schools. Recently they collaborated with Touch NZ, The Halberg

Foundation and Kiwi Sport which enabled them to facilitate Wheelchair Turbo Touch into many Northland Schools. “Because of this we were able to connect with over 1000 students across Northland and show how easy it is to provide adaptable and inclusive sports,” said Sharon Carroll, the Community Sports and Events Coordinator.

One of the highlights of the year is the annual water sports day held at the beautiful Kowharewa Bay in Tutukaka. Here you can try paddle boarding, surf skiing, kayaking and waka ama, all facilitated by experienced

instructors. Not keen to make a splash?

Then there is always some beach cricket, a yummy sausage sizzle or you can just relax with family and friends while you enjoy this beautiful sheltered spot.

Parafed has been a long-time supporter of the Te Raki Northland Wheelchair Basketball Team also, which is growing in numbers as people get involved in this fast paced, fun sport. Don’t have a sports chair? That is okay, they can loan you one!

This team is like a family, who enjoy weekly local training with opportunities for away tournaments, which connect with other teams throughout the North Island.

Parafed is committed to opening doors to create new opportunities in various sports such as para cycling, wheelchair turbo touch, golf, swimming, wheelchair basketball, water based sports, walk/push/ move social groups, sailing and precision ball sports such as boccia.

Parafed Northland provides opportunities for people living with physical disabilities to gain new skills, improve wellbeing, have fun, and connect with others.

To find out more about what Parafed Northland have on offer or to get involved you can visit our website www.parafednorthland.com or email us admin@parafednorthland.co.nz or call Sharon on 027 705 9520.

PARAFED NORTHLAND IS A NON-PROFIT ORGANISATION THAT PROVIDES SPORT AND RECREATION OPPORTUNITIES FOR NORTHLANDERS LIVING WITH A PHYSICAL DISABILITY.

WWW.PARAFEDNORTHLAND.COM

HEADS UP ON BANK

Since its inception in 2013, Heads Up on Bank has proven that it is possible to look great without compromising your health.

Heads Up on Bank was built on a strong ethos of holistic health and environmental awareness. We strive to choose the products we use and sell very carefully. They are all cruelty-free and as natural as possible (organic wherever we can), while maintaining a professional result.

At Heads Up on Bank we are lucky to have a very experienced team, including hair stylists, beautician, and a naturopath/ nutritionist, ready and able to assist you with your hair, beauty or health-related problems. We really value our clients, who become friends, and offer birthday treats, a loyalty program and great monthly specials and package deals.

Whether it’s our natural products, friendly team, or great value for money, there’s a reason for everyone to come.

We welcome you calling in for a free consultation and discussing how we can achieve your dream look the natural way.

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Disability A Matter of Perception

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MND New Zealand Kia ora and Welcome

W

e are here to help and support people with Motor Neurone Disease (MND) and those who care for them.

MND New Zealand works with people living with MND to enable them to have the best quality of life possible. We help people with MND access medical expertise, support services and equipment that they may need.

Sally is the Support Team person for Northland. She is available to provide free, personalised support and advocacy for people with MND. Sally offers education, up-to-date information and practical strategies for people with MND, their whanau and the health professionals caring for them.

MND New Zealand is the only national organisation focused on MND. We concentrate on three key activities; • Providing support to people living with MND and those who care for them

• Providing community education and awareness • Promoting, identifying and developing research opportunities within New Zealand and internationally. Including the New Zealand MND Registry.

In June 2019 MND New Zealand was selected to be the official charity of Emirates Team New Zealand for the 36th America’s Cup. Fulton Hogan, foundation corporate sponsor to MND New Zealand have committed to a three-year partnership to provide funding to assist in the provision of practical support for people living with MND, their families, whānau, and carers. This funding is provided via grants distributed by the Fulton Hogan MND New Zealand Support Fund.

To provide a quality national service, increase community awareness and support research development, MND New Zealand raises funds throughout the year with events

Sally King MND Support Person – I truly appreciate it when I am invited to walk alongside folk for a while. Whakawhetai ki a koe.

Work days Monday - Thursday Phone 027 202 8166 or 09 280 3196 Web www.mnd.org.nz Fb www.facebook.com/mndanz Northland: sally.king@mnd.org.nz 027 202 8166

Take yourself places other wheelchairs can’t go The 6x6 Explorer wheelchair is an all-terrain off-road electric wheelchair made for the outdoors.

Ideal for farms, bush, on the beach, ifestyle blocks, hunting and fishing. This ultimate 6-wheel-drive outdoor electric wheelchair will take you places other wheel chairs and mobility scooters will not go.

Phone: 09 409 4973 | www.kemcare.co.nz

such as Awareness month held in June and Walk 2 D’feet.

Due to the uncertainties we are all facing this year our fundraising activities may look a little different. Our website welcomes you to participate in Virtual fundraising events and challenges. (Check it out!)

MND New Zealand welcomes your support by way of donations, participation in our fundraising activities, increasing awareness and above all understanding of people living with MND. To contact the Northland Support Team member email; sally.king@mnd.org.nz or call 027 202 8166. www.mnd.org.nz

What Makes a Good Life?

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Keep on Keeping on with MND

B

eing told that you have Motor Neuron Disease (MND) is a devastating blow for almost everyone. Many are shocked and saddened; some cannot believe it, and many ask themselves “Why me?” However, most people feel it is important to find some way of accepting and adjusting to the diagnosis, if they possibly can, both for their own peace of mind, and for the sake of their families.

A comment from Kevin on the MND website says; “MND is extremely scary and confusing. You need professional support as early as possible to get all your choices in order. It helps to have difficult conversations early, so you can get on with enjoying life.”

MND can mean a loss of independence.

People need to dig deep to find the positives. Sian, Kevin’s wife says “There are silver linings. We chat in the shower. I help him go to the loo. We got out to lunch and I feed him. This is us. It is our normal. In some ways, we are happier than ever.”

Many people continue working, volunteering and being active in their own communities for as long as they can. They keep on doing all the things that they have always done. We all need a sense of purpose, so, to keep on keeping on is hugely valuable to feel good about yourself and to face the challenges of MND. Equipment, technology and above all the

support of other people can be vital to enable people to continue doing all that they love to do. As the daughter of someone with MND says, “Mum now communicates with her eyes. The technology that allows her to type by moving her eyes is fabulous. I feel like she is still with me when she sends an email. I know it’s taken her a lot of time and energy to write it using just movements of her eyes, but I appreciate it so very much.”

A common thread through what people with MND say is, “You just have to get on with it in your own way. There is no right or wrong way. Just do what is right for you.”

Michael Hopper uses his trusty steed to explore the beach and bush around Matapouri. Supplied by Kemcare Ltd

The 6 x 6 Explorer, all-terrain off-road electric wheelchair enables him to access tracks, beaches, rocks and farmland around Whangarei

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Disability A Matter of Perception

32

Northland MS Society

N

orthland Multiple Sclerosis Society offers a wide variety of services to people with MS, family/whanau members and carers. The Northland area extends from Wellsford, coast to coast to Cape Reinga.

The service provides information, education and support, encouraging a proactive approach to managing this disease. If you have MS the Society provides for you and your family and/or carers: • A MS Field Worker who is a NZ Registered Nurse.

• Home visiting service. Support and information to you and your family about your condition or in your role as a caregiver.

• Educates you, your family and other health professionals about MS and related disorders.

• Advocates for you with other support agencies and health professionals and informs you of services available in the community.

• Provides education material and books, both available from the MS office.

• Library Books covering all aspects of MS are available to take out on loan • Holds monthly support groups for those with MS. • Offers a weekly Pilates exercise class • Bi-monthly newsletter which includes useful information on research and development of MS and advice on staying well.

What is Multiple Sclerosis (MS)?

Multiple Sclerosis is one of the most common diseases of the central nervous system. A fatty substance called the myelin sheath covers the fibres of the nervous system. The myelin protects the nerves and helps the messages move between the brain and the rest of the body.

In MS, the myelin sheath covering the nerves in the brain and spinal cord become scarred in scattered patches. This is multiple scarring, or sclerosis. Essentially this distorts or prevents the flow of messages from the brain and the spinal cord to other parts of the body.

The distortions to the messages travelling through the nervous system cause a range of problems for the people with MS. Although it is important to note that there is no typical set of MS symptoms, the following are common (in varying combinations or severity): • Loss of balance or coordination.

• Tremor and weakness.

• Blurred or double vision, eye pain (usually only affecting one).

• Difficulty with legs, arms and hand movements.

• Bladder and bowel problems.

• Numbness and pain.

• Problems with thinking and remembering.

• Sexual problems.

• Fatigue.

What Causes MS? At this time the cause of MS is still unknown. However, research suggests it is likely to be a combination of the following: a reaction to a virus, possibly years

after infection; exposure to an unknown environmental agent before puberty; an auto-immune reaction in which the body attacks its own tissue for an unknown reason; or a genetic susceptibility to the above triggers.

How is MS Treated?

While MS still cannot be cured, much can be done to help manage the condition.

There are MS-specific treatments available.

These directly target the immune system.

A Neurologist determines whether these are relevant for each person. Generally the person with MS works with their GP on the day to day management of the condition.

As the Office Manager is only available 14 hours per week (Monday and Tuesday from 9am - 2.30pm / Wednesday 9am to 12pm), an answer phone is in place to take messages, which are responded to as soon as possible.

Urgent contact can be made to the Field Workers mobile phone.

Contact Details: Level one upstairs Civic Arcade 37 Bank Street Whangarei 0110 Phone/Fax: (09) 438 3945 Mobile: 027 539 9883 Email: nthldms@xtra.co.nz Web: www.msnz.org.nz Facebook: Northland Multiple Sclerosis Society

WHEN:

Thursday 3rd December 2020 10am - 2pm WHERE:

Cameron Street Mall, Whangarei

For more information: 0800 430 3406

What Makes a Good Life?

33

Gael Nankivell

M

y personal take on this theme for 2020 would be to ask: What makes my life good? There are some basics to address before I can see how I’m doing with this!

Firstly, acceptance: I was diagnosed with Multiple Sclerosis twenty years ago and so I needed to accept that MS was going to be a part of my life for the rest of my life, though hopefully not the centre of it. Then the need was to be accepted by others: Family, friends, community and society in general.

Respect: I’m the same person on the inside, but now, after twenty years, I’m a little different. I need a walking stick and at airports I will use a wheelchair. I might need some help sometimes or I might need a

few moments to get my thoughts together, or make my legs work; the same, but outwardly different.

Support: We all need that at times, and my support comes from my husband, sons, my wider family and friends, and my friends from within the MS community. Of course there are also medical professionals and disability groups.

A sense of wellbeing: What have I achieved in life? Sometimes we think we need to leave a legacy behind and we ask what we have done to change the world.

No, I’m not famous or rich but I count myself lucky to be a Mum and having had the privilege of raising two boys who have grown into wonderful men. They are my legacy and I am immensely proud of that

achievement. How do we get self-worth though? What is my purpose in life? I will always be a mother, a wife to my very patient and caring husband, a person who loves to garden (yes I do garden but with varying results), to be outdoors, to read good books and eat dark chocolate. I can say I am happy to be me!

Fun and laughter: Laughter truly is the best medicine! We all need more of that. So what makes a good life? I would suggest all of the above.

Gael Nankivell

PAK’nSAVE Whangarei are proud to support The Northland Multiple Sclerosis Society.

WHANGAREI Walton St, Whangarei, 0110 Phone 09 438 1488

WE’RE LOCALS SUPPORTING LOCALS

Disability A Matter of Perception

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NorthAble DIAS – Disability Information Advisory Service NorthAble provide free information and advice to people with a disability, their families, whanau, aiga, caregivers, providers and the general public. We are here to assist and answer any of your questions.

You can like our facebook page, head to our website, and check out www.firstport. co.nz to access helpful information, news, and events, or sign up to our weekly electronic newsletter by sending us an email - dias@northable.org.nz NASC – Needs Assessment Service Coordination Talk to our NorthAble Needs Assessment Service Coordination Team (NASC) if you or someone you care for is aged 0 – 65 and requires long term support due to a physical, intellectual, neurological, sensory disability or autism.

You can check your eligibility, make a referral online, or give us a call to find out more.

EQ+ - NorthAble Equipment Plus EQ+ is Northland’s largest supplier of Rehab, Aged Care and Disability equipment/ products that support people who are experiencing a temporary or permanent impairment.

You may have experienced an accident or injury, be waiting for, or recovering from surgery, or simply aging gracefully and finding some of those everyday tasks and activities more difficult. Whatever

your situation, we have a large range of equipment to assist you available for sale and hire.

We also specialise in providing free and informative equipment presentations and training to community groups and organisations, health groups and professionals, and the wider sector.

With an office in Whangarei, a mobile van service, and an Equipment agency at Far-North Pharmacy in Kaitaia, NorthAble provides disability support and information throughout Northland.

Check out our website www.equipmentplus.org.nz/ LYNKZ NorthAble LYNKZ is a community-based service that works with its clients to improve their life skills and increase employment awareness and opportunities.

Our LYNKZ programme is available to individuals aged between 16 and 64, who have a cognitive, physical, sensory disability, or a combination. We provide daily activities from Monday to Thursday with everything from cooking classes to trips to the zoo or beach. Our aim is to provide opportunities for all of our clients to become more confident while learning valuable skills as they engage in the community. Like and follow NorthAble LYNKZ on Facebook.

VHN NorthAble provides a Very High Needs (VHN) service funded by MSD, for clients who have Ongoing Resourcing Scheme

(ORS) funding as defined by Ministry of Education. Our VHN coordinator works directly with you and your family/whanau or support people to tailor make support plans based on individual goals & objectives to engage in everyday social activities and participate in the local community.

Navigation Service NorthAble Navigation Service (NNS) aims at enabling individuals with disabilities and their family/whãnau to create a positive future for themselves. NNS facilitates interventions and support around opportunities for self-determination for families to build and maintain resilience.

To find out more about these services, the eligibility criteria, and referral process, visit our website.

Transition NorthAble has recently been awarded a contract for Transition Services. If you have ORS funding and are leaving school in the next 2 years call us to find out more about this service.”

NorthAble Disability Services: 40 John St, Whangarei NorthAble Equipment Plus: 73 John St, Whangarei Ph: 0508 637 200 or 09 430 0988 Email: drc@northable.org.nz Website: www.northable.org.nz and www.equipmentplus.org.nz

What Makes a Good Life?

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Harley and Rhonda

R

honda West had no experience of the disability sector before her grandson Harley Tupe-Rakena came to live with her in 2016, and she soon realised there would be a lot to learn. Harley (now 8) has Hemimegalencephaly, and the two halves of his brain are not connected. For Harley this condition means that he has physical paralysis of his left side, difficulty swallowing and an intellectual disability. Harley uses a wheelchair for mobility and is non-verbal, but is learning to communicate using lanyard cards and a computer device.

In the beginning, Rhonda struggled to come to terms with all the different people and agencies she was now dealing with

to support Harley - “I was being asked all these questions and what Harley’s needs were, and I didn’t even understand them myself”. Things started to become easier when the NASC Facilitator made a referral to CCS Supported Lifestyles and a CCS Coordinator supported her to talk to agencies like WINZ and Ministry of Education, but getting regular support for Harley was still an issue.

In July 2019, Rhonda reached crisis point – “I had been holding myself strong, I didn’t want anyone to think I couldn’t do this, but once I hit that crisis point I was really honest about how I felt; I opened up to my NASC Facilitator and she was a huge support,

providing ways forward to get Harley the care he needed but also kind words which made all the difference.”

One of the supports that NASC helped Harley to access was regular respite at Kind Hands which Rhonda says Harley loves “it gives him a chance to hang out with his peers, as well as giving me a chance to get into my garden and recharge my batteries; respite had been offered to me several times before and I had always been protective and not wanted Harley to go, looking back, if I had accepted the help earlier it may never have reached crisis point”.

Rhonda continues to maintain regular contact with the team at NorthAble –“As well as my NASC facilitator they contact me from time to time, for example during the Covid-19 lockdown I received several calls checking in on Harley and me, it was so great to know someone was out there thinking of us”.

When asked what advice she would give to anyone in her situation, Rhonda stated “Let people know how things really are for you; there is a lot of help out there, but no one can help you with problems that they don’t know exist. Also, trust your gut instinct and don’t be afraid to question things people tell you; we were told that Harley would never have any mobility or be able to eat any solid food, but now he spends several hours each day in a walking frame and can take steps in this and eats three meals a day”.

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Disability A Matter of Perception

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Parent to Parent Northland

E

very year hundreds of Northland whanau face the unique challenges of caring for a loved one with disabilities and health impairments. Parent to Parent has been supporting these families for the past 35 years with its three core services: 1. Information and support on over 3600 different conditions 2. Parent support and networking 3. Supporting the siblings of children with disabilities.

No other organisation in New Zealand offers these services, and they are free and confidential.

Northland Regional Coordinator Don Martin, has continued to build on his work towards ensuring that Parent to Parent Northland keeps developing in the whole region.

Don says “I want to engage with more communities in Te Tai Tokerau. To me it is important to respond to peoples’ needs by being a resource working within their own processes and wairua. The last few years have been the beginning of a fantastic journey, where every day is a new learning opportunity. E mihi atu ki a koutou katoa i arahi i ahau. Thank you to everyone who has guided me. This year we kick off the inaugural seven-day Voyage for Siblings which is very exciting; way too exciting to expand here so I welcome anyone to contact me and find out more about this amazing opportunity for siblings aged 13-18 yrs.”

Don wants to ensure parents, whanau and their supporting professionals who can benefit from these services, know about

them and feel welcome to make contact for more information.

Information Information on over 3600 common to very rare conditions; posted/emailed information that is easy to understand, tailor-made for a child’s specific condition/s, and in most languages.

Parent Support Connecting with another parent who has ‘been there’ – a trained Support Parent who has a child with the same/similar condition or experienced similar issues. Support Parents are further enough along the track to feel confident to complete intensive training and ‘give back’ to new parents.

SibSupport Camps and programmes for the brothers and sisters of children with disabilities.

All programme leaders have siblings with disabilities, and have been there too.

SibSupport acknowledges the extra effort their ‘different’ home life demands, and gives them the chance to talk about issues such as feeling left out at home or bullying at school.

Our workshops are community driven and include: • Renew – for parents new to the world of disability • Support Parents – intensive training (and refresher courses) for volunteer parents wanting to support others • SibCamps/SibShops/SibDays – for the brothers/sisters aged 8-18 of people with disabilities • Championing Your Needs – for families

Lifelong support for Kiwi families caring for kids with disabilities ! Chat with others who have ‘been there’ ! Information on 3600+ disabilities/conditions ! SibSupport for the brothers and sisters (aged 8-18) of .people with disabilities ! Workshops, family activity days, coffee groups, camps and more ! Unique and FREE services for family/whānau and professionals Connect with Parent to Parent Northland Mob. 027 808 3942 Toll free 0508 236 236 E. northland@parent2parent.org.nz W. www.parent2parent.org.nz

and professionals to learn how to be heard and advocate for a child’s educational and living needs • Navigating the System – for parents wanting clarity around support and resources available and how to access these providing an opportunity to hear from, and meet local service providers and agencies.

• Anxiety Workshop - for parents who want to better understand feelings of anxiousness and the effect it can have between yourself and your children.

• Second Generation – for adult siblings and parents/whanau for a ‘whole family’ approach to lifelong care for their family member with a disability.

Other support services include: • Altogether Autism delivered in partnership with Life Unlimited.

• Care Matters delivered in partnership with SAMS (Standards and Monitoring Service) and Carers NZ. • Prism is autism spectrum disorder (ASD) training for professionals, tailored to suit the organisation and presented by facilitators with significant knowledge of ASD and associated issues.

Don Martin - Regional Coordinator Mobile 027 808 3942 Freephone 0508 236 236 northland@parent2parent.org.nz www.parent2parent.org.nz www.facebook.com/ parenttoparentnorthland

What Makes a Good Life?

37

What do people do to relieve stress?

Don asked this question of several parents supported by Parent to Parent.

S

tress seems to be on the rise with many changing pressures in society.

Most recent change is the new way of life forced upon us by new terminologies such as Covid-19, lockdown and social distancing. We have changed working hours and no longer do families have the core 40-hour week between Monday and Friday.

Housing is becoming increasingly harder and families are often working two, three, four-plus jobs.

Matthew Peppercorn of TASK Mental Wellness presented a series of anxiety workshops in Northland last year explaining

For me it’s about keeping a balanced life and I like the Te Whare Tapa Wha and the Mental Health Foundation’s 5 Ways to Wellbeing models for this.

Time with family and friends, physical exercise, meditation and a role where I can contribute to society tick all these boxes for me.

- Jane

One of my go to stress relievers is music! Whether that’s playing the guitar, or putting some music on and having a dance in the living room with my tamariki.

- Emily

that we actually need a bit of stress in our lives. Matthew said “Small amounts (of stress) give us the energy to get up in the morning and a bit more (stress) takes us from being too laid back to being active.

However too much produces fatigue, exhaustion, anxiety, depression and breakdowns.”

Matthews spoke of wellness and breathing as being important and getting oxygen into the brain deep down. This is supported by Nigel Latta who said “Mindfulness is the single most powerful thing you can do to deal with stress and

To relieve stress, I plonk my kids in front of a movie and use the time to do something for myself that I love – reading, crafting, or just sitting outside with a cuppa and watching the clouds... whatever helps me clear the Brain Weasels out for a while - Louise

A technique that I am using at present is mindfulness. Bringing the stress levels down by bringing our minds back to the here and now long breaths, taking notice of what we can feel, see and hear.

- Breanna

anxiety and depression.” (Newstalk ZB, 23/08/2018).

What happens when a family has a child with a disability, health issue or autism and sometimes all three? There are many families with one active parent. How do the words of Matthew and Nigel stack up with reality and what parents do?

To find out Don spoke to parents that Parent to Parent support to find out what they did to relieve stress and this is what they said.

I enjoy keeping active with like minded wahine, and then baking with my tamariki.

- Blanche

Staying active was initially for my physical health but now I exercise is to keep my mind nice and healthy too, - Te Reo

One thing is apparent. Everyone is different with one commonality and that is each parent did something special for themselves. To look after others firstly you must look after yourself. You deserve it.

The Wilson Home Trust.

Supporting physically disabled children, young people and their families is our top priority

The Wilson Home Trust supports children and young adults with physical disabilities up to the age of 22, and their whanau who live in the Upper North Island - from Turangi in the South to Cape Reinga in the North.

We do this in a range of ways including: • Financial Grant funding • Information & Support • Hydrotherapy sessions • School holiday programmes • Equipment demonstrations In Northland we have a part time contractor Don Martin who represents the Wilson Home Trust. Don spends a lot of time travelling around the region talking to individuals, groups and organisations about the Wilson Home Trust and how we can provide support to our beneficiary families.

Our Auckland based team are also available to provide information and support.

Contact us today 0800 948 787 or email info@wilsonhometrust.org.nz

Information is also available on the website www.wilsonhometrust.org.nz and facebook page www.facebook.com/wilsonhometrust1

Disability A Matter of Perception

38

Parkinsons Northland

P

arkinson’s derives its name from Dr James Parkinson, who discovered the condition in the late 18th century.

Over 11,500 New Zealanders live with Parkinson’s. Parkinson’s is a progressive neurodegenerative condition. The most common physical symptoms are tremor, stiffness, rigidity and slowness of movement. Other symptoms include depression, anxiety or apathy, disturbance of normal sleep, constipation, and trouble swallowing or speaking. The average age at diagnosis is 59.

When you have Parkinson’s, your body’s ability to regulate dopamine is affected.

This, in turn, means that your movement becomes slow and rigid over time.

At present Northland has 355 members registered with Parkinson’s Northland and this number is continually rising yearly.

Although Parkinson’s currently has no cure, its management has been improved

by modern technologies to enable Parkinsonians to lead useful and sustaining lives. One of the greatest aids is physical exercise and Parkinson’s NZ, Northland Service Centre provides home visits from a Parkinson’s Nurse and a range of activities throughout the North.

• Whangarei, weekly walking group, hydrotherapy, physiotherapy, voice exercises, Movement for PD and ballroom dance, Counterpunch groups.

• Kerikeri, weekly Tai Chi, Counterpunch and Movement for PD groups.

• Carers Groups in Whangarei & Kerikeri.

Support Groups are held monthly in Whangarei, Waipu and Kerikeri. Bimonthly meetings are held in Dargaville and Kaitaia. All of these meetings have a range of activities both educational and social in nature.

Upbeat Meetings are held throughout the year for people diagnosed before the age of

60 and are under 65.

The Northland Service Area extends from Te Hana south across to Kaipara and up to North Cape.

We have two qualified Parkinson’s Nurses who share visiting clients in their own homes to monitor their condition and advise on management to enable quality of life. They collaborate with health authorities, give-inservice lectures to rest homes and promote awareness within the community.

Vicki Sadgrove covers central Whangarei, Onerahi, Tutukaka Coast, and all points north. Barbara Leslie covers the southern areas Whangarei south from junction SH14 to Te Hana and West & East coasts.

“The secret of being Happy is accepting where you are in life and making the most out of every day”

Parkinson’s New Zealand Free phone: 0800 473 4636 info@parkinsons.org.nz www.parkinsons.org.nz

PARKINSON’S NZ: THE NEED 2,700 people are diagnosed with Parkinson’s in New Zealand every year.

First established over 55 years ago, Parkinson’s New Zealand is the only NZ organisation providing education, information and support services to people living with end affected by Parkinson’s ond Parkinsonism conditions.

Our Mission: “To provide support, education and high - quality information to people with Parkinson’s end Parkinsonism conditions, their carers, whanau and health professionals.”

To get in touch with u & , please call 0800 473 4636 or visit www.parkinsons.org.nz to download a referral form and send it through to clinical@parkinsons.org.nz.

2019

2019

PEOPLE ATTENDED EXERCISE CLASSES

HOME VISITS BY REGISTERED NURSES

4,718 4,836

2019

910

REFERRALS TOWARDS OUR SERVICES

2019

2019

PEOPLE ATTENDED SUPPORT GROUPS

REFERRALS TO OTHER HEALTH PROFESSIONALS

4,374 1,372

What Makes a Good Life?

39

David Cairns

F

or retired vet David Cairns, of Whangarei, Parkinson’s disease means living his life at a different pace.

David at first attributed his early symptoms of the disease to growing older.

“I noticed I was getting a bit slower. That was really the first sign, and my handwriting, which has always been terrible, got worse.’’

Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.

As a busy vet and equine specialist, David says he always prided himself on his strength and co-ordination.

“I could type at 30 words a minute, but that soon went. Everything just got slower,’’ he says.

Always keen on tramping and climbing, David says trying to maintain fitness is now his daily focus. “There is a lot of research to show exercise is hugely beneficial, as good as any medicine,’’ he says.

David starts each day with a walk, and he prefers to tackle hilly country.

“I find walking up and down hills easier than flat ground which seems to accentuate my lack of coordination and I bumble along.’’

Good nutrition is also important, and he follows a diet somewhere between low carb and the Mediterranean diet. Vitamins and minerals are also part of his regime, especially magnesium, which is particularly

good for stopping muscle cramps, as well as vitamins B1 and B3.

David says he has tried drugs traditionally prescribed for Parkinson’s patients but he found they did not work for him.

“However, what I have learnt from this disease is that it affects everyone differently and some people get good results from taking drugs. It’s important to work out whatever works for you,’’ he says.

David says while the challenge of losing some functionality is frustrating and can be embarrassing, it’s important to overcome that and continue to get out and about.

“Eating can be a bit of a messy exercise, but I have a good circle of friends who understand.”

He says another feature of the disease is muscle stiffness causing an expressionless face and being slow to respond.

“There is still plenty going on inside. We can follow everything and there is nothing wrong with our brains, but it’s hard to keep up with the quick repartee and banter of a group, so it’s easy to feel left out.

People shouldn’t hesitate to strike up a conversation and be patient for a response.

“The public are generally all very good and are always offering to help me. My experience has been very positive,’’ he says.

So what makes a good life for David is regular exercise. When you have Parkinson’s, your body’s ability to regulate dopamine is affected. This means that movement can become slow and rigid over time. Research has shown that people with Parkinson’s who exercise regularly, every week, have an improved quality of life and can experience better balance, coordination, agility, cognition, dual tasking skills and strength.

If you’re keen to exercise you can make it fun. You can also join team Parkinson’s NZ and ‘Get Going for Parkinson’s’ by running, walking, swimming, cycling, or sailing – the choices are endless - and do good by raising funds and awareness for families living with Parkinson’s at the same time.

Get in touch and we will send you a pack that includes training tips from legendary New Zealand Olympian runner and Parkinson’s New Zealand Ambassador, the late Sir Peter Snell. www.parkinsons.org.nz

Disability A Matter of Perception

40

Supporting life after stroke in Northland

A

stroke is a brain attack where blood supply to the brain is stopped by either a bleed or a blockage. A stroke can happen to anybody and can be devastating for many people and dramatically change their life. The effect is certainly wider than just the person who had it.

Supporting life after stroke is the role of the Stroke Foundation’s Community Stroke Advisor service.

This free service is available throughout Northland to work with stroke survivors and those around them, providing experience, support and hope that is designed to achieve the best possible outcome after stroke.

Community Stroke Advisors, Lynelle Ngakuru (Far and Mid North) and Geno Milnes (Whangarei and Kaipara areas), work closely with those who have been affected by stroke, making hospital and home visits, supporting families/whanau and caregivers,

advising on accessing care relief services and support.

Lynelle and Geno’s, general focus is on rehabilitating the stroke survivor back into the community and assisting family/whanau and caregivers to not only understand a stroke, but to adjust to their changed circumstances.

The Stroke Foundation provides free information about stroke and managing life afterwards through Community Stroke Advisors and via the Stroke Foundation’s website. The book “Life After Stroke” provides good information and is readily available in hospitals and from Community Stroke Advisors.

Community Stroke Advisors know about, and link clients to local support groups and recreational activities. These include exercise groups, sports clubs, accessible gyms, art and craft groups, therapies, caregiver, partner or family support groups and younger stroke survivor groups.

OUR MISSION:

We work to prevent stroke, improve outcomes, and save lives

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Stroke support organisations in Northland are located in Kaikohe, Kerikeri, Whangarei and Dargaville and can be contacted through a Community Stroke Advisor. These groups provide support to people with stroke, and those around them. They enable people to share experiences, understand more about stroke, meet new people and participate in social activities and special events.

Other groups include the Word Masters Whangarei Aphasia Gavel Club which is designed to assist those people who have a communication difficulty as a result of a stroke or traumatic brain injury and a stroke hydrotherapy group assisted by the Stroke Foundation and run weekly at the Whangarei Aquatic Centre with Physiotherapist Isobel Finlayson’s support.

Community Stroke Advisors in Northland Lynelle Ngakuru – Far and Mid North (Cape Reinga to Kawakawa) Freephone: 0800 566 383 Email: far.north@stroke.org.nz Geno Milnes – Northland (Kawakawa to Wellsford) Freephone: 0800 459 954 Email: northland@stroke.org.nz Web: www.stroke.org.nz

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What Makes a Good Life?

41

Stewart Hohepa When Stewart Hohepa felt dizzy and started walking into walls three years ago, he had no idea how much his life was about to change.

Just 44, he was busy and active, working full time as a self-employed painter with a staff of six. He was also passionate about his work as a pastor for the Pentecostal Church in Kaikohe where he conducted a youth group, bible studies and visitations.

He loved to travel on missionary work to the Pacific Islands.

His wife, Anita, says that Stewart’s life was always “busy busy”.

Three weeks later he had driven to Otara for a youth service and made it through half of the service before he had to stop.

Stewart unfortunately had a major stroke.

Anita says “it was touch and go for some time, but he was fortunate that a relative who was training to be a nurse was at the church that evening so was able to offer help”.

He had a second brain bleed that night, which caused more damage and left him partially paralysed on the right side.

“I was still up in Kaikohe and got phone calls that were increasingly urgent telling me to get down there.”

Stewart was in hospital for 12 weeks, which was a tremendous strain on his family, especially 10-year-old daughter Sydney-Rose.

Now 47, Stewart has had to get used to a different pace of life.

Anita says he hated it at first, but he never acted out or got depressed.

Their strong faith has helped a lot with coping with their new circumstances.

“It’s different but in some ways it is better.

Something like that really makes you take a look at your life and take stock,’’ she says.

“Before, Stewart never seemed to be home and now we are together much more as a family.’’

Church activities are still an important part of their family life and Stewart continues to work as a pastor.

But his business had to close down and Anita also closed down her café business that she ran in rooms attached to their house.

“The people from the Stroke Foundation used to meet at the coffee shop and then come next door to help Stewart.

“But there was no way we could keep the businesses going.’’

The coffee shop has now been turned into a part-time activity room filled with bric a brac and old tools from Stewart’s painting days. ‘’He loves pottering around in there and his face lights up when people come in,’’ says Anita.

Gardening is also a favourite activity as well as reading, singing and recordings.

Foot pedals are helping with building up leg strength.

This year swimming at Paihia was a highlight. Always keen on fishing and eeling, Stewart had missed the water.

“He was in the water for about three hours. He wouldn’t get out,’’ Anita says.

For Stewart, a good life is keeping active, being involved in church life and living for each day.

at any sign of stroke

CALL 111

Support us at: stroke.org.nz

#ThinkFAST #ActFast

Disability A Matter of Perception

42

A growing partnership

Sowing the seeds of growth through volunteering

J

ordan MacDonald probably didn’t expect running a native plant nursery would lead to learning a new language.

Jordan is an environmental educator and Manager at He Kākano Community Nursery. And Sweetie Loeak, who mostly communicates through New Zealand Sign Language, is her “very hard-working and most regular volunteer”.

Sweetie has been volunteering at He Kākano, the native plant nursery for the Mountains to Sea Conservation Trust, since 2018 when she first registered with Volunteering Northland. Sweetie, who started off using the services of a sign

interpreter in her role, quickly established herself as a valuable team member and went on to teach Jordan basic Sign Language. Jordan followed up the learning processes with an 8 week sign language class. Although Jordan remains modest about her ability, she appears quite fluent when signing and having a laugh with Sweetie at the nursery.

Sweetie has lived in New Zealand for 5 years. She has an adult daughter in Auckland and is in regular contact with her extended family in mainland USA, Hawaii, Marshall Islands and Guam. Alongside her hobbies of jewellery making and coffee,

Sweetie Loeak and Jordan MacDonald bagging seedlings in the central Whangarei nursery, signing the word “tree”

Sweetie cherishes her friendships within the deaf community, and loves volunteering as it provides her with regular contact with the wider community.

Sweetie’s particular joy volunteering at He Kākano is in seeing the fruits of her labour; watching the native plants grow from seeds she has collected and planted, to witnessing the riparian planting projects all around Whangarei. Her other favourite activities include seed collecting trips and of course the Christmas party and other celebrations they have as a team.

Mountains to Sea Conservation Trust are always looking for extra helpers on Fridays at He Kākano. The work is in a fun, friendly and safe environment. Mountains to Sea also have plenty of community planting days during the winter season and share their seedlings with other community groups.

As for Sweetie, you can also find her gardening on a monthly basis at North Haven Hospice in Tikipunga, as well as joining in the regular volunteer days supporting the restoration efforts on Matakohe/Limestone Island.

All these organisations deeply value the volunteers that work with them. If you would like to volunteer and are not sure where to start call in to the friendly team at Volunteering Northland now based in the Civic Arcade on Bank St. They can guide you through the hundreds of opportunities to see where you can make a difference.

What Makes a Good Life?

Citizens Advice Bureau Whangarei

W

e’re still here! That’s been the motto of Citizens Advice Bureau nationally over and beyond lockdown, a variation on the usual We’re Here message, which points to all the different ways people can access our service – freephone, face to face, email, and live chat from the website cab.org.nz.

We are definitely still here, in Whangarei, despite the fire in the Municipal Building and Covid-19 machinations. We learned a lot from the fire about working remotely, and with the flash new Voice Over Internet Provider phone system we upgraded to, Covid-19 was a walk in the park technologically speaking.

When people leave a message on our 438 8046 number we get an email with a sound recording of it attached. The national 0800 367 222 number, free for cellphones, is strapped to the nearest open office so you will get to a local person here both ways, between 9am and 4pm.

We are here now on the second floor of the beautiful Old Public Trust Building at 69 Bank Street, next door to our usual home at 71.

The entrance is between the Thai Chef restaurant and Shosha retail outlet. It is inaccessible to wheelchair users as there are six steps from Bank St to the lift, and for this we apologise. We are open to arranging to meet you at any location that suits, with laptop in hand, to talk over any issues.

We still run our fortnightly Free Legal Advice Clinics, and have made provision for the duty lawyer to ring any clients who do not wish to come to the bureau. You get about 15 minutes of free advice from the duty lawyers, but they cannot act for you in court or in any other matter.

We like to think we do a similar job – at least we should know whether you are really going to need to contract a lawyer, or whether you can work through whatever process it is with a little support from one of our volunteers. We will also send you a link to, or post to you, the relevant page of information from our truly fabulous website. Having our basic information on the subject allows you to make better use of any time with a lawyer later.

We are here online too, being one of only a few bureaux nationally who handle the live chat enquiries from the website. Since Covid this service has more than doubled in popularity as a way of getting the advice people need for urgent employment, tenancy and parenting rights issues.

We are here for benefit rights enquiries too, with our part-time beneficiary support worker ready to navigate the complexity of the welfare system and ensure people are getting everything they are legally entitled to receive in this turbulent time.

During lockdown our volunteers helped the Ministry for Social Development contact a group of over-70 year olds who live alone and who do not have an electronic contact. We are happy to report that most of them, as one volunteer said, “had just returned from a long walk and were about to get on with the bottling”. There were many who were grateful for the contact and some we could arrange help for.

It’s what we do, so don’t suffer from lack of knowledge about your rights, or from an inability to articulate your circumstances, because that’s our reason for existing. Our second reason to exist is to ensure that central government knows about any systemic barriers, which we do through our policy people in Wellington who contribute to legislation.

Our latest report to government was about the number of people who do not have the use of a computer, or know how to use one, or have access to the internet. It’s called digital exclusion, and was presented a few months before Covid. A useful piece of research, as it turns out!

We train our volunteers to be more than a listening ear - although that always helps. Our job is to make sure you understand the options available to you, whatever your current circumstance. No strings, free, confidential, independent advice. Not sure? Ask us.

43

Disability A Matter of Perception

44

TLC4U2 In Home Care Provider

T

LC4U2 – tender loving care for you too provides quality care services from Cape Reinga to Auckland and beyond. tlc4u2 provides ACC funded care for clients who have sustained an injury, whether it’s assisting taking a client to an appointment or 24/7 care for clients who have traumatic brain injuries or spinal cord injuries.

With their locally based team, tlc4u2 provides 24-hour support to ensure you receive the level of support and care you need that is delivered with compassion and understanding. tlc4u2 works alongside clients and families to individualise care

needs and incorporate a holistic approach.

Having forged close relationships with allied health services (hospice, social workers, district nursing, home based support services, GP’s) tlc4u2 has access to health care resources to ensure high quality delivery of services. tlc4u2 also offers a broad range of privately funded home-based care options assisting clients with post-operative, rehabilitative, respite, palliative, and overnight care. Identifying the appropriate level of care with the goal of maintaining and enhancing lifestyles to promote independence is what tender loving care is all about.

Should you require some tender loving care for yourself or a family member, whether ACC or privately funded give tlc4u2 a call and one of our lovely coordinators will arrange a no obligation visit to see how we can assist.

Some comments from our clients: “Very easy to talk with. I never felt a nuisance and am very appreciative of the help I have received. Took away so much stress I felt.”

“If I was feeling unwell my home help supporter was always considerate. Very very hardworking lady.”

“The caregiver is great which reflects on your company. I consider myself fortunate to have met a clean efficient caring support worker”.

tlc4u2 specialises in providing live-in care in your own home, enhancing your life style and independence.

IN HOME CARE PROVIDER

• • • •

ACC funded Care Private Care Respite Care Palliative Care

• Overnight care • Post/Pre Op Care • Long Term Care

For further information contact P 0800852482 W www.tlc4u2.co.nz

What Makes a Good Life?

45

Forget Me Not

T

he Northland Disabled Charitable Trust is a non- profit organisation and has been operating the Forget Me Not Adult Day Centre in Tikipunga, Whangarei since 1994. The Centre is a day care service and is available to adults of all ages including those who are young with disabilities, the elderly and frail, those with memory loss, head injuries and/ or other disabilities. The Centre provides quality day care that enhances the welfare not only of the clients but also of the carers and families who look after their loved ones at home on a 24 hour a day basis. The Centre has capacity for 40 client visits per day. The Staff are qualified in their respective fields, and are experienced and caring. Entry criteria is based on you visiting and having a look around to decide if you would like to attend.

There is no huge protocols for attendance other than enjoying and benefiting from attending.

The programme is structured with a variety of activities that provide motivation, education, rehabilitation and fun. A cooked lunch is provided daily for clients and ‘take home’ meals service is available for clients who require an evening meal. Clients are transported to and from the Centre by the Trust vans.

To achieve the best quality service to our community the Trust relies heavily on philanthropic funding and sponsorship to keep the service sustainable.

Frozen Meals At Forget Me Not we have identified a need for supply of meals that are easily heated at home.

These delicious meals are not restricted to clients only, but are available for any of the elderly and disabled people in our local community who can no longer cook meals themselves at home.

The meals are cooked in our WDC A certified kitchen by our chefs and are freshly frozen. Moulied meals are available if needed on request.

Forget Me Not was an essential service during the recent COVID 19 shutdown supplying hundreds of meals to the elderly disadvantaged and those with disabilities in the Whangarei Community. These meals were delivered to the person’s doorstep.

In response Forget Me Not has had many letters of gratitude from those who would not have been able to cope in the isolation of their homes during this time.

Forget Me Not 110 Boundary Road, Tikipunga WHANGAREI 0112 Phone: 09 4371144 manager@forgetmenot.org.nz www.adultdaycentre.co.nz

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Disability A Matter of Perception

46

Welcome to Spectrum Care – how can we help?

W

e’re an independent charitable trust that provides support for children, young people and adults with disabilities and their whanau.

Our services include 24-hour support for people living in residential homes, and a wide range of flexible respite support options in the Northland, Auckland, Waikato, Bay of Plenty and Wellington regions.

We also provide in-home ‘buddy’ support, post-school ‘transitions’ and goaloriented ‘aspirations’ support, along with a range of school holiday, after-school and weekend respite programmes.

Our independent living support is specifically focused on empowering people towards living their lives of choice – lives like any other – in the community, and we also provide support for people towards achieving their employment goals.

Flexible respite support, tailored to your needs Our flexible support options can be structured to suit each whanau’s unique needs.

These supports can be fully funded through your whanau member’s needs assessment or ‘NASC’ funding, partially funded through Carer Support payments and ‘topped up’, or privately funded on a fee-for-service basis.

Our aim is to ensure disabled people and their whanau have choice, control and flexibility in the supports they receive, are at the centre of their support provision and have the opportunity to co-create their own support services.

We also use a ‘one team’ approach to build trust and familiarity, and work with people and whanau to develop individualised support options that are easy to use and access.

Talk to us today about our flexible support options and to discuss your specific needs.

Contact us today to find out more! www.spectrumcare.org.nz info@spectrumcare.org.nz

How can we help you?

We offer a wide array of flexible support options in the Northland, Auckland, Waikato, Bay of Plenty and Wellington regions, which can be structured to suit each family’s unique needs.

Our aim is to ensure people have choice, control and flexibility in the supports they receive and have the opportunity to co-create their own support options. We also offer a navigator service 0508 NAVIG8 aimed at helping families new to disability support.

Contact us today to find out more! www.spectrumcare.org.nz info@spectrumcare.org.nz I 09 634 3790 I 0508 NAVIG8 (0508 628 448)

Disability A Matter of Perception

48

What’s going on at Blomfield Specialist School?

L

earning, laughter and lives well lived –that’s what is happening for Blomfield Students!

Blomfield School holds a special place in the hearts of many Northerners. We are a ‘one of a kind’ school up here , offering a personally driven programme of support that helps to activate the right kind of learning for each individual student .

Personalised Learning Plans (PLPs) are co -constructed with our students and whanau to create a big, bold plan for whole of life learning. Some students make leaps and bound –some chip away making small but treasured progress-it doesn’t matter – we start where the student is at.

Here are some Fun Facts about Blomfield: Did you know...

• We have a heated indoor swimming pool at our Central Campus?

• We are one of the closest school to the central business district in Whangarei?

• We have a visiting Music Therapist and Drumming Practitioner weekly?

• We have a dedicated Team Leader Maori?

• We have seven ‘satellite ‘classes at Morningside School, Manaia View School and Kamo High?

• We have over 100 passionate, experienced and skilled staff?

• We provide Outreach Teachers to provide ORS Specialist Teacher time to students in mainstream schools or on Correspondence?

• We have a dedicated Literacy Coach and a Maths Coach who are experts in delivering these programmes to students with learning support needs?

• We have satellite units at Kaitaia Primary and Kaitaia College?

• We have Kapa Haka sessions weekly?

Blomfield Specialist School Free phone: 09 438 2105 admin@blomfield.school.nz www.blomfield.school.nz

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• We have a dedicated Student Transport Coordinator?

• We employ our own specialists?

We have two Speech Language Therapists, one Occupational Therapist, one Physiotherapist and we have Behaviour Support by registered Psychologists going into classrooms three days a week!

• We have an expanded MultiSensory Room with State of the Art equipment?

• We have a full time Work Experience Job Coach for our senior students?

• We have a dedicated Hard Materials Technology Teacher and workroom?

• We have two highly skilled Food Technology Teachers?

The list goes on – this is how we can ensure that we have a way for all students to tap into and engage in learning –so that they can learn, laugh and live their best lives.

Come and see us and let us change your thinking.

Helping protect Kiwis since 1950

What Makes a Good Life?

49

Special Olympics Whangarei Sporting Opportunities for Athletes with an Intellectual Disability Since 1984 when then Mayor Joyce Ryan collected together a committee of interested locals, Special Olympics has been providing sports training competition and socialising opportunities for intellectually challenged athletes in Whangarei.

Today a group of committed volunteers help to provide activities in Whangarei and Dargaville for a round 60 persons with an Intellectual impairment who would normally be sidelined in mainstream competitive sports.

Special Olympics Whangarei is part of a nation wide network of 44 similar clubs administrated over all from Wellington, in turn affiliated to Special Olympics International, a world-wide organisation of some 5 million athletes. Our folk are in good company.

We are multisport. Join us, and you can train and compete in any, or all, of: athletics, equestrian, football, indoor Bowls, swimming and Tenpin bowling. Some of our people take part in more than one activity each week. A handful participate in 3 or 4.

We cater for athletes almost from 8 to 80. Some of our current Athletes began as primary school pupils at Blomfield School back in the 1980’s. One reasonable subscription covers everything. All prospective athletes need is a doctor’s verification of intellectual impairment and a current medical certificate.

While we are primarily a sporting club we are committed to providing opportunities

for our people to widen their horizons, use initiative, to learn to speak out, express their opinions and take control.

Our motto is, By the athletes, for the athletes. We are encouraging a few athletes to act as athlete coaches with support, and suggesting that our volunteers stand back and mentor rather than being in charge.

Should you wish to join us as a volunteer, because you will be working with vulnerable people you will need a current police clearance, which we can arrange.

Interested parents, athletes, prospective volunteers, or volunteer drivers please contact our chairperson: Martin Barrie 021 118 2422

Sporting and recreation opportunities for persons with an Intellectual impairment We are multisport athletics: equestrian, football, indoor bowls, swimming and tenpin bowling Athletes from 8 to 80 years old Developing self esteem — encouraging initiative Activities developed by the athletes, for the athletes

DOUG THE DIGGER

loves working in the Community assisting people with disabilities Proud patron of

Special Olympics Whangarei For all enquires contact Martin Barrie Phone: 021 118 2422 – Like us on Facebook.

Whangarei

Disability A Matter of Perception

50

Care for a great career?

I

f you’re interested in working with people who face challenges in life, NorthTec has several study options which might interest you.

You can train or upskill for a career in the caring professions by studying some of our most popular programmes, which prepare you for employment here in Te Tai Tokerau.

Our three-year nursing degree will enable you to go into work in a wide variety of health settings, from hospital-based nursing to work in the community. You can chose to go into work helping and supporting people with mental or physical health issues.

Many people choose to study nursing at NorthTec due to their own experiences, or that of their whānau and friends. You’ll study with people of all ages, from all backgrounds and walks of life, who are brought together in the classroom by their caring nature and their desire to give something back to the community.

You can apply directly to join the Bachelor of Nursing programme. However, if you’ve been out of study for a while, or have left

school without gaining University Entrance (UE), you can start with a lower-grade qualification which can then lead you to being accepted for the degree.

The Level 4 New Zealand Certificate in Study and Career Preparation is offered

by NorthTec with a focus on health, social services or environmental science. Taught in Kaitaia, Kerikeri and Whangārei, it’s a great introduction to any of these degree programmes and will help you brush up your study skills and build your confidence in your academic abilities.

You might also be interested in studying health and wellbeing. The New Zealand Certificate in Health and Wellbeing

(Mental Health and Addictions) is a Level 4 qualification which you can study in Whangārei, Kerikeri or Kaitaia.

It’s something of a voyage of discovery, as you learn about yourself in the course of learning how to help others. Again, many students on this programme draw on their own personal and family experiences while studying how they can best provide professional support to people.

Along with the Certificate in Study and Career Preparation, this programme can also offer a stepping stone to NorthTec’s Bachelor of Applied Social Work. The social work degree is a four-year programme which prepares you for a career working with some of New Zealand’s most vulnerable people.

Again, you’ll discover yourself as you explore how to support people living under challenging circumstances, and work to improve the lives of individuals, whānau and communities.

Study from home with NorthTec

I

f you prefer to upskill from home, NorthTec can help with our range of TANZ eCampus online study options.

These can be studied any time, anywhere, and you’ll still receive the support of our experienced and caring tutors. They’re fully online and we offer a wide range of qualifications, the most

popular being in the areas of business, administration and information technology.

For more information or to enrol go to https://www.northtec.ac.nz/programmes/ ecampus.

For creative types, NorthTec also offers fully online programmes in applied writing. You can learn how to write as a

professional, from developing an idea to publishing your work. Go to https://www. northtec.ac.nz/programmes/appliedwriting for full details.

What Makes a Good Life?

Learning disorder becomes a teaching tool for Georgia

D

egree student Georgia Miller never realised she was dyslexic until she came to study at NorthTec. Georgia, now 24, who grew up in Kerikeri, completed a Bachelor of Sport and Recreation1 at NorthTec in 2017. She then went on to study teacher training at Waikato University, and is now in her second year as a PE teacher.

She loves her job, loves teaching at Whangarei Girls’ High School, and has a particular passion for hockey.

However, Georgia credits her success to the support she received at NorthTec, especially the expert assistance provided by Academic Advisor, Iris Hutchinson.

When she reached her second year of studies at tertiary level, Georgia began to struggle academically. She said: “I was actually about to give up. I understood everything but with my writing, it didn’t come out how I wanted it. Iris asked if I was dyslexic – I replied that no, I can’t be if I’m going to be a teacher.”

As a result of their conversation, Georgia decided to take a test for dyslexia, which identified that she did have the learning disorder, which is characterised by difficulties in reading and writing.

She said: “Iris totally is the reason why I passed and kept going. I looked at it as a disability, but she said it was just another 1

way of thinking. At first it was a shock and then it was relief, due to the help and support which is what got me through.

“I would go to Iris and she would help me with different techniques and different ways of writing my work. She was just amazing. I was able to take the techniques on afterwards and it was them that got me though my teacher training.”

Now, as a fully-fledged teacher, Georgia says her attitude towards her dyslexia has changed. She tells her students she is dyslexic, and that she may make mistakes.

This in turn enables them to open up to her and not feel afraid of making mistakes or taking risks with their learning.

She said: “So it has turned out to be a good thing in my life. Iris was absolutely amazing, and NorthTec is amazing for people that need that close relationship with their tutors. If you’re scared of jumping out of high school, or if you struggle with writing, NorthTec is the best.”

Huria Bruce-Iri, NorthTec’s Manager Student Services, said: “Any student who is struggling for any reason can contact our team of Navigators for help. They will direct them to our Advisors, who can help with academic matters and disability issues, as well as financial issues. Providing support and assistance to our students who require it is a key feature of life at NorthTec.”

This is an AUT degree, taught and delivered in Northland by NorthTec

ENROL NOW FOR SEMESTER 2 Up to 40 NorthTec programmes are now currently fees-free in 2020.

They’re available to all learners for the rest of this year – so there’s never been a better time to retrain, upskill, or follow your dreams.

Build yourself a better future by studying fees-free with NorthTec and get your career on track.

Visit our website and check out your options: www.northtec.ac.nz/feesfree

p: 0800 162 100 e: study@northtec.ac.nz www.northtec.ac.nz *Terms & Conditions apply

51

Disability A Matter of Perception

52

2020-2021

AUGUST 2020

CALENDAR OF EVENTS

1st – 31st

Heart Kids Month www.heartkids.org.nz

28th

Cancer Society Daffodil Day

SEPTEMBER 2020 1st -30th

World Alzheimer’s Month

1st – 30th

Remember September – Students Against Drunk Driving www.sadd.org.nz September Month - Cerebral Palsy www.cerebralpalsy.org.nz/

1st -30th

Muscular Dystrophy Awareness Campaign

1st -30th

Charcot Marie Tooth (CMT) Awareness Month (part of MDA)

7th

Duchenne Muscular Dystrophy Awareness Day

15th – 21st

Multiple Sclerosis Awareness week www.msnz.org.nz

22nd or 23rd

Alzheimer’s Memory Walk – Dargaville, Kerikeri and Whangarei -Round the loop www.alzheimers.org.nz

21st

World Alzheimer’s Day www.alzheimers.org.nz

21st - 28th

Arthritis Awareness Week www.arthritis.org.nz

21st – 27th

Week of the Deaf and NZSL Week www.deaf.org.nz

22nd

Walk 2 D’Feet MND www.mnd.org.nz

23rd

United Nations International Day of Sign Languages

30th

Limb Girdle Muscular Dystrophy Awareness Day

30th

World Deaf Day www.nfd.org.nz

OCTOBER 2020 1st

International Day of Older Person www.ageconcern.org.nz

2nd

Tiaho Trust/Age Concern Kaitaia Seniors Expo

2nd to 8th

Stroke Awareness Week www.stroke.org.nz

10th Annually

World Mental Health Day www.mentalhealth.org.nz

12th

World Arthritis Day

15th – 17th

Blind Week Street Collection

25th

World Sight Day

27th

Brain Injury Northland Blast Fundraiser Dinner (possibly to be postponed)

25th-27th

Alzheimer’s Conference, Auckland www.alzheimers.org.nz

NOVEMBER 2020 To be advised

MS Walk the Loop

DECEMBER 2020 3rd Annually

International Day of People with Disabilities - Tiaho Trust celebration – Cameron Street Mall 10am – 2pm

10th Annually

World Human Rights Day www.amnesty.org.nz

JANUARY 2021 4th

World Braille Day

FEBRUARY 2021 4th

Annual International Epilepsy Day www.epilepsy.org Ruakaka Surf Day (Date to be announced)

28th

Rare Disease Day

MARCH 2021 1st – 31st

Neurological Awareness Month

1s t- 31st

Cerebral Palsy Awareness Month

What Makes a Good Life?

2020-2021

21st Annually

CALENDAR OF EVENTS Down Syndrome Awareness Day www.nzdsa.org.nz

24th-25th

Blind Foundation Guide Dog Red Puppy Appeal

26th

Epilepsy Awareness “Purple Day” www.purpleday.org

APRIL 2021 2nd Annually

World Autism Awareness Day www.autismnz.org.nz

2nd -7th

Parkinson's Society Awareness and Appeal Week www.parkinsons.org.nz

11th Annually

World Parkinson’s Day www.parkinsons.org.nz

MAY 2021 1st – 31st

Multiple Sclerosis Awareness Month

1st -31st

Huntington’s Awareness Month

1st – 31st

Bake a Difference Campaign (Muscular Dystrophy NZ)

9th May

World Lupus Day

30th

World Multiple Sclerosis Awareness Day www.worldmsday.org

JUNE 2021 1st - 30th

Heart Kids Month

1st -30th

MND Awareness Month

20th

FSH

21st

Global ALS/MND Awareness day www.mnda.org.nz

JULY 2021 1st – 7th

Neurological Foundation Appeal Week

27th

Myotonic Dystrophy Awareness Day

Parkinson’s Northland SUPPORT GROUPS Kerikeri- 3rd Thursday monthly Kaitaia – 3rd Tuesday every 2nd month Whangarei – 1st Friday monthly Dargaville – 1st Thursday every 2nd month Waipu – 3rd Friday monthly

Brain Injury Association Northland SUPPORT GROUPS Kerikeri – 1st Thursday monthly Dargaville – 2nd Thursday monthly Kaitaia – 3rd Thursday monthly Whangarei – The last Thursday monthly

Weekly Exercise Groups: Walking, Singing/voice training, Hydrotherapy, Physiotherapy, Ballroom Dance, Movement for PD and Tai Chi (Kerikeri) Alzheimer’s Northland Support Groups Whangarei – 1st Wednesday of the month And 2nd Thursday of the month Ngunguru – 3rd Tuesday of the month Onerahi – 1st Tuesday of the month Kerikeri – 1st Wednesday of the month Kaitaia – 2nd Wednesday of the month Mangawhai - 2nd Wednesday of the month Dargaville – 2nd Wednesday of the month Bream Bay -1st Wednesday of the month

Stroke Foundation Northland Support Groups Whangarei – Every Tuesday Hydrotherapy Classes Every 3rd Wednesday Stroke Club Every Friday Toastmaster Gavel Club Group Young Stroke Survivors Group Dargaville – 1st Monday of the month Stroke Survivors Kaikohe – 1st Monday of the month Stroke Survivors

Arthritis 20+ Northland Support Groups Whangarei - 1st Saturday of the month Every Thursday exercise class

Multiple Sclerosis Northland Support Group Whangarei – Last Thursday of the month Mid North/Kerikeri – 2nd Thursday Bi Monthly

“GETTING OUT THERE” EXPO 2021 – 20th August 2021 – Forum North

53

“No Problem, You’re Welcome”

C U S TO M E R S E R V I C E S K I L L S T R A I N I N G I N D I S A B I L I T Y AWA R E N E S S “No Problem, You’re Welcome” is a training workshop and video which focuses on how to provide excellent customer service to people with disabilities when they enter your place of business or health services.

Did you know that 24 percent of New Zealanders are considered to have a disability?

That potentially represents one quarter of your customer/client base – are your staff equipped with the right customer service skills to ensure a positive customer experience for everyone?

Who is the workshop for?

This two hour customer service skills training workshop is ideal for retailers, health service providers, Government , Non-Government Organisations (NGOs) and other businesses or organisations to improve the level of disability awareness with their frontline staff. We tailor-make the training to suit the provider.

These include: • Health Service Providers

• Disability Services

• Non-Government Organisations (NGOs) • Retail Stores/Restaurants • Local/Regional Councils

• Gyms, Pools and Fitness Centres

• Government Departments

• Legal and Accounting Professionals

If you want to ensure your team is providing excellent customer service to 100% of the people who come through your door, contact Tiaho Trust for information and pricing options. Email Arlene Carter : arlene@tiaho.org.nz Tiaho Trust I Ph 09 430 3406 | Fax 09 438 1679 | Web: www.tiaho.org.nz

About the “No Problem, You’re Welcome” workshop Tiaho Trust represents the disabled community here in Northland. Our aim in producing this workshop was to provide understanding for service staff in how to engage with disabled people as consumers, including older people as they become less mobile or develop physical impairments as they age.

The “No Problem You’re Welcome” training workshop uses real examples of people’s experiences as consumers with a disability.

This is a short and cost-effective means of providing professional development for staff that can have 5 -!#2!8'52+ 01-!+!)% !305'+ 12 +"% '*-+13%.(- %:0%.!%2'% ;!+" 91*. $.12+<!2% 0%.-122%<7 52& "%<0 Each of our workshop facilitators are people with a disability. They offer real insights in how to be 4%++%. -%.)!'% 0.1)!&%.-7 &.5;!2# 12 8.-+"52& %:0%.!%2'%- +1 52-;%. /*%-+!12-6 ,9 +"% %2& 1$ +"% '1*.-%7 91* ;!<< )!%; &!-54!<!+9 $.13 5 &!$$%.%2+ 0%.-0%'+!)% 52& 4% '128&%2+ !2 providing excellent customer service to disabled people in the same way as for all your customers.

Regional Business Partners 50% training voucher This workshop comes under the NZTE Capability Development Vouchers scheme. You can apply for this through Northland Inc. and the Northland Chamber of Commerce Regional Business Partnership.

“Having made the “No problem, you’re welcome’ sessions available to all of our operational staff, it was exceptionally well received. Facilitators, Wally and Kim really brought the content to life making the learning fun and memorable. Comments such as “I’d never really thought about that…” were a sure sign that new ways of thinking and acting will result from the workshops.”

Michael Boyd, Manager - Learning & Development, Far North District Council

“Jonny and his team at Tiaho Trust have been providing Disability Responsiveness Training to our 2nd year nursing students at NorthTec for the past 5 years now. The session provided to us has been tailored to suit the learning needs of the students and meet our objectives. Facilitators are knowledgeable, entertaining and connect with the class ensuring a sense of whanaungatanga and a safe learning space. Feedback from the students is always positive and they particularly appreciate learning from people who are ‘living the experience’ and feel the information and strategies provided will enhance their ability to work with people who have disabilities.”

Linda Christian RN, MN, Senior Nursing Lecturer, NorthTec

Tiaho Trust PO Box 374, WHANGAREI Ph 09 430 3406 | Fax 09 438 1679 Web: www.tiaho.org.nz

EQ+ EQUIP · ENABLE · EMPOWER

The EQ+ brand is so much more than equipment and disability information services. "*, /-1)* 5!,*&2!2% *1 1). (),*13&.,0 42'!2% ,15)*!12, /2' %1!2% *#/* &$*./ 3!5&+ Mobility & Daily Living Equipment for Sale & Hire • • • • • • •

Scooters / Power Chairs / Ramps E-Bikes Walkers / Wheelchairs Crutches / Walking Sticks Kitchen / Daily living Equipment Adjustable Beds / Lift Chairs Bathroom / Toilet Equipment / Safety Rails • And so much more.

Mobile Van Services Our mobile van service travels throughout Northland on a monthly basis. We are also happy to provide in-home demonstrations with some of our equipment (fees & conditions may apply).

Community Group Equipment Presentations We provide free and informative equipment presentations and training to community groups and organisations, health groups and professionals.

0508 637 200 09 430 3469 73 John Street, Whangarei equipment@northable.org.nz

equipmentplus.org.nz

Equipment Agency at Far North Pharmacy 53 Commerce Street, Kaitaia • 09 408 0851