PVINZ eVision Newsletter #105

We l co m e to eVision Newsletter #105

eVISION

NEWSLETTER

PVI.ORG.NZ

Paren t s of V i si on Impai red New Zeal an d In c Su ppor t ed by t he B li nd F ou nd at i on

FACEBOOK.COM/PVINZ

We also have a private group for the parents.

W E LC O M E TO eV I S I O N 105

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Welcome to eVision 105! We include in this newsletter a reminder about our annual conference from 26-28 October in Wellington where we do have some spaces still available.

THIS IS AN IMPORTANT TIME FOR PARENTS AND THEIR FAMILIES AS SIGNIFICANT CHANGES ARE HAPPENING… • The Enabling Good Lives programme in mid-central New Zealand is about to roll out on 1 October 2018.

• Tomorrow's Schools review is under way and it is apparent that our parents have not been well served by this educational experience. Disability support groups have been significantly marginalised with this regime.

• The Education Summit conversations initially started in Christchurch and Auckland have signalled an overwhelming movement for change.

DAV I D L E PO F S KY LA W Y E R , A C T I V I S T, A C A D E M I C

In 1979, David Lepofsky graduated with honours from Osgoode Hall Law School with a Bachelor of Laws. He obtained a Masters of Law from the Harvard Law School in 1982. Since his admission to the Ontario Bar in 1981, he has practised law in the Ontario Public Service in the areas of constitutional, civil, administrative and most recently, criminal law. Since 1991, he has also served as a parttime member of the University of Toronto Faculty of Law, where he teaches an advanced constitutional law seminar on freedom of expression and press.

Since the late 1970s, he has been active in a volunteer capacity, advocating for new laws to protect the rights of persons with disabilities in Canada. In 1980, he appeared before the Joint Committee of the Senate and the House of Commons on the Constitution of Canada, on behalf of the Canadian National Institute for the Blind for an amendment to the proposed Charter of Rights, to guarantee equality rights to persons with disabilities.

The efforts of a great many combined to lead Parliament to pass the disability amendment to the Charter.

From 1980 to 1982, he was on the leadership team of a broad disability coalition that successfully advocated for inclusion of protection against discrimination based on disability in the Ontario Human Rights Code.

From 1994 to 2005, he led the Ontarians with Disabilities Act Committee. That coalition successfully campaigned for 10 years to win passage of two new Ontario laws to make Ontario fully accessible to persons with disabilities, the Ontarians with

Disabilities Act 2001 and the Accessibility for Ontarians with Disabilities Act 2005. Since then, he has helped in efforts to get that law effectively implemented. As of late February, 2009, David became the chair of the Accessibility for Ontarians with Disabilities Act Alliance.

Awards include investiture in the Order of Canada (1995), the Order of Ontario (2007), and the Terry Fox Hall of Fame (2003), honorary doctorates from Queen's University and the University of Western Ontario, and awards from other organisations including: the City of Toronto, the Law Society of Upper Canada, the Ontario Bar Association Public Lawyers Section, the Advocates Society, the Ontario Crown Attorneys Association, the Ontario March of Dimes and Community Living Ontario.

He is the author of one law book, and the author or co-author of 30 law journal articles or book chapters on topics including constitutional law, criminal law, administrative law, human rights, and the rights of persons with disabilities. He has lectured on topics including these across Canada, and in the US, Israel, Ireland, Denmark and Belgium.

D AV I D W I L L B E R E T U R N I N G TO N E W Z E A LA N D 5 - 13 N O V E M B E R 2018. W A T C H O U T F O R A P A R E N T M E E T I N G TO B E A R R A N G E D.

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OUR KEY NOTE SPEAKERS WILL BE: We will be joined at conference by executives and staff from the Blind Foundation, BLENNZ and a number of our kindred consumer groups. We will create time and space and opportunity for breakout groups during the day on the Saturday.

SACHA O’DEA PROGRAMME LEAD, SYSTEM TRANSFORMATION Sacha O'Dea joined the Ministry of Health in March 2017 to lead the co-design process with the disability sector to begin a nationwide transformation of the disability support system.

Sacha has been involved in Enabling Good Lives since 2013 in her previous role as a general manager, Working Age Policy at the Ministry of Social Development. In 2014, Sacha led the government delegation for New Zealand's first examination of its progress in implementing the United Nations Convention for Rights of Persons with Disabilities. Sacha has had a number of policy and operational roles in public sector agencies including ACC, the Department of Labour and the Ministry of Housing.

PARENT STORY Always a highlight of the PVI conference... we are keeping this parent a secret.

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CATARACT KIDS AUSTRALIA Cataract Kids Australia was established in 2017, initially by parents of children with congenital cataracts. We also involve health professionals and researchers across Australia.

Megan Prictor (PhD, LLB (Hons)) is a parent of a child affected by congenital cataract. She has many years' professional experience in research in the field of evidence-based healthcare, consumer engagement in health, and most recently as an academic lawyer focusing on health, law and new technologies. Her son's prenatal diagnosis with bilateral cataract and her subsequent experience of the ups and downs of managing that condition, and connection with other families experiencing a range of difficulties, prompted her to establish Cataract Kids Australia in 2017.

Cataract Kids Australia is a charity aiming to improve the information and support provided to children affected by cataract and their families; to work with clinicians to optimise treatment outcomes; and to link with researchers to improve the integration of research into patient information and clinical care. Its website (cataractkids.org.au) and launch events held this year in Melbourne and Sydney demonstrate what Cataract Kids is all about—bringing together kids and their families, health professionals and researchers to make progress in improving diagnosis, treatment and support around this challenging condition.

CO N F E R E N C E 2018 TRANSITION AND RESOURCES THE PAT H WAY TO S U CC E S S

SONJA CARPENTER Sonja Carpenter was born in New Zealand to Dutch parents, and has lived and worked in New Zealand, Holland, Thailand, Laos, and Wales, mostly within the disability sector. In Thailand, she met her husband, Andy (a British OT), while working in a children’s home for children with disabilities. They married, adopted two daughters, now aged 26 and 31 (both with a disability) and also have two birth children (16 and 19).

The Carpenters currently live in Christchurch, New Zealand, where Sonja trained as a mature student to become a speech and language therapist, followed by her Masters (May 2009).

Since July 2008, Sonja works, as an SLT, in early intervention with children with multiple disabilities (including visual impairments), at the Champion Centre in Christchurch. Sonja and Andy’s 26-year-old daughter has a visual impairment.

Sonja’s role at the Champion Centre includes assessing children, within a multidisciplinary team, for any communication tools they may need (Augmentative Alternative Communication, AAC). This includes communication books and boards and/ or iPads with communication apps. Sonja has worked with children with a variety of visual challenges including cortical visual impairment (CVI).

Sonja will speak to her experience of working with these children and their families, in the context of exploring their communication development. Sonja is by no means a vision expert, but speaks from the experience and knowledge she has gleaned along the way from colleagues (at the Champion Centre and at BLENNZ) and from useful sites such as The Perkins School for the Blind (Christine Roman Lantzy).

TINA LINCOLN CARE MATTERS, LEARNING & WELLBEING Tina is the parent of three daughters including one who has unique needs and has a multitude of challenges. Tina dreams for her daughters and aspires for them all to have a purposeful and fulfilling life.

Tina’s personal experience has lead to 20 years’ experience in the disability sector. She has worked for SAMS for 12 years developing and delivering workshops sharing valuable information with the purpose of enhancing the lives of families/whanau whilst extending their thinking as to the possibilities for their child/adult.

Through lived experience Tina continues to learn from her daughter and shares how families can reflect on and learn from their own journey to create their own dream and turn it into a reality.

The success of Tina and her family have been acknowledged through her work on the Enabling Good Lives team and as a Co-facilitator for the Mid-Central Regional Leadership group.

She took up the invitation to be a parent member of the first phase co-design group for the system transformation of disability support because, as she states: "I am driven and passionate that all people should be treated equally and respectfully in everyday life experiences, including the wider community."

Tina lives in Feilding and enjoys her journey with her links to Te Ati Awa whanau.

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H A P P I N E S S I S A J O U R N E Y, B Y F AT H E R A L F R E D D'S O U ZA For a long time it seemed to me that life was about to begin, real life. But, there was always some obsacle in the way, something to be gotten through first, some unfinished business, time still to be served or a debt to be paid. Then life would begin. At last it dawned on me that there is no way to happiness. Happiness is the way.

So treasure every moment that you have and treasure it more because you share it with someone special, someone special enough to spend your time with. Make the most of your time. Don’t waste too much of your time studying, working, or stressing about something that seems important. Do what you want to do to be happy but also do what you can to make the people you care about happy. Remember that time waits for no

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one. So stop waiting until you take your last test, until you finish school, until you go back to school, until you have the perfect body, the perfect car, or whatever other perfect thing you desire.

Stop waiting until the weekend, when you can party or let loose, until summer, spring, fall or winter, until you find the right person and get married, until you die or until you're born again to decide that there is no better time than right now to be happy.

Happiness is a journey, not a destination. So work like you don’t need the money, love like you have never been hurt, and dance like no one’s watching.

OF

Reflections T H E LA S T 14 Y E A R S

Where have the years gone? I thought it was 16 years but Linda says it is 14 years I have been on the PVINZ board so I will go with that, and in this time I have always been known as the grumpy treasurer.

I have decided it is time to stand down and let new blood come onto the board.

I have tried to do this a few times but have always been encouraged to stay on for another term. In this time I have not missed a board meeting and only missed teleconference meetings three times as I was out of the country.

It has been a great time with me having to get out of my comfort zone and deal with advocacy cases at schools etc.

With my good mate Paul Manning getting sick and then passing on I was dropped into the deep end, but it was fun.

I got to go before a select committee at Parliament, and over a period of probably three years I was regularly down in Wellington attending meetings with the Ministry of Education on Special Education. I would look around the room and see all qualified people all around me and call myself the dumb farmer without a degree but I know I held my own and got listened to.

Hopefully, changed a few things for the better.

I was also privileged to be on the BLENNZ Board of Trustees for two terms.

I have met some wonderful people in my journey and thank them for their wonderful friendship and help, but as I said above it is time to stand back and let others take over.

New people who want to be members of the board see the list in this eVision of what areas are up for re-election. Yes there is a bit of time involved. Maybe 30 minutes a week answering email etc., 3-4 weekend meetings a year at various places and maybe a few teleconferences every other month, but many hands make light work.

Thank you all.

DON FAIRGRAY We say a huge thankyou to Don for his contribution to PVI. Not only has he advocated strongly for our parents and families, he has listened and mentored many of us through the hard times. When we worried about sustainability, and standing in for others, he was always there supporting and encouraging.

FINAL CONFERENCE CALL CO N F E R E N C E A N D AG M 2018

TRANSITION AND RESOURCES T H E PAT H WAY TO S U CC E S S

26-28 O CTO B E R EL W E S T P LA Z A H O T WELLINGTON

The PVINZ Conference will be held in Wellington: Friday 26 October (assemble), Saturday 27 October and Sunday 28 October 2018 VENUE: WEST PLAZA HOTEL, Wakefield Street CBD We are limited to 65 parent conference delegates, so it will be first in first served.

PVINZ WILL PAY FOR MEMBERS: • Return air fares in New Zealand.

• Accommodation share twin West Plaza Hotel, Friday and Saturday night.

• Breakfast Saturday, Sunday. Lunch Saturday. Banquet dinner Saturday night.

• Parent delegate reg fee $160 per couple.

• Parent delegate reg fee single $80.

• Single with own room a supplement of $40 per per day.

Friday night will be mix and mingle. The conference will start at 9am on the Saturday and conclude at 12pm on the Sunday.

For PVINZ members wishing to provide their own transport to attend only the Saturday programme, we will have limited space available.

For delegates attending from our partner organisations and professions we have a registration fee of $120 per person. If attending the dinner an additional $50 is required.

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Parents of Vision Impaired (NZ) Inc 2018 PVI CONFERENCE REGISTRATION FORM 26-28 October 2018 AT TENDING PARENT - CAREGIVER/S DETAILS. PLEASE PRINT OR TYPE Parent 1: (Last name)

(First name)

Parent 2: (Last name)

(First name)

Address:

Email Address: Telephone:

Day

Evening

Mobile

Air

Depart date

Depart time

Air return

Depart date

Depart time

By Car

Car park required?

Travel arrangements:

Yes

No

In order to secure cheaper air fares we need to register and book early.

ACCOMODATION is on a share twin basis Friday night meal is at your cost.

Yes Friday night accommodation

No

The accommodation bookings will be made by PVINZ Inc, so please do not call the hotel.

DAY PROGRAMME Saturday only

Yes

Yes

Saturday night accommodation

No

Friday + Saturday night accommodation Yes

No

No

CONFERENCE REGISTRATION COST is $80 per parent delegate.

SPECIAL REQUESTS: Diet: MOBILITY Issues: PARENT CONFIRMATION OF MEMBERSHIP: I confirm my child

(Name of child needed to confirm membership)

Has a serious vision impairment and that I am a registered parent / caregiver of Parents of Vision Impaired NZ Inc SIGNED: Please send this form to Parents of Vision Impaired NZ Inc , P O Box 513 Waikanae, 5025 or email to david@pvi.org.nz For delegats attending from our partner organisations and professions we have a registration fee of $120. Accommodation and travel is at your cost.

COST

SUMMARY Parent registration per couple: $160 per couple Parent registration share twin: $80 Parent single accommdation: $40 per night Delegates partner organisation: $120 Delegates partner organisation dinner: $50

TOTAL NUMBERS ARE LIMITED SO PLEASE REPLY AS SOON AS POSSIBLE. 9 P V I N Z #104

Deposit directly to our bank account ASB account # 123100 0115685 00.

National Office: Level 1, 11 Mahara Place, Waikanae 5025, New Zealand. P.O.Box 513 Waikanae.

National Executive Officer: David Heather Mobile: 0274 402 073 Telephone: 04 293 8236 Email: david@pvi.org.nz

WWW.PVI.ORG.NZ

BE A FUTURE BOARD MEMBER

Some thoughts about our annual meeting and participating as a future board member.

We will be staging our annual general meeting at our conference in Wellington on 27 October 2018. Now is the time to start thinking about your organisation and your part in its future. PVINZ had small beginnings to where we are today, and we have over the years kept to the same formula. We are there as the network for parents and families, connecting, supporting and advocating where needed. More importantly we have fun achieving these simple objectives. We have been extremely well served over the years by parent board members.

If you would like to stand for election as a board member here are a few comments about what is required.

• Board members usually serve a two-year term representing various regions of New Zealand and Tangata whenua.

• The board or national executive committee usually meets three time per year, mainly in Auckland and Wellington, as well as at conference AGM. • PVINZ pays for all air fares, transport, accommodation and meals to attend.

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• The board usually assembles on the Friday evening and disperse on the Sunday morning.

• The board operates with a number of smaller subcommittees so that the workload is spread and is interesting.

• The board operate its own Facebook page, and maintains and oversees the PVINZ Closed Parents Facebook page and the open website and open Facebook.

This year at the annual meeting we will be voting for board members for the following areas: • Upper North Island • Central North Island • Lower North Island • Upper South Island • Anywhere in New Zealand • Tangata Whenua Over the years we have established a reputation as a respected and high-profile parent advocacy group. As a result we have seen our advocacy result in changes and better resources for all our parents and whanau.

If you are interested please contact 04 293 8236 or 0274 402 073 or email david@pvi.org.nz

A N N U A L G E N E RA L M E E T I N G 28 O CTO B E R 2018 N O M I N AT I O N F O R M F O R E L E CT E D P O S I T I O N S 2018 — 2019

NOMINATED BOARD MEMBER NAME

NOMINEE SIGNATURE

NOMINATED BY

SECONDED BY

SIGNATURE

DATE

PLEASE RETURN COMPLETED FORM TO Parents of Vision Impaired NZ Inc. P.O Box 513 Waikanae 5250

david@pvi.org.nz

Send by 15 October 2018 NB: One Form Per Nomination

National Office: Level 1, 11 Mahara Place, Waikanae 5025, New Zealand.

P.O.Box 513 Waikanae

National Executive Officer: David Heather 0274 402 073 04 293 8236 david@pvi.org.nz

WWW.PVI.ORG.NZ

NOTICE OF THE ANNUAL GENERAL MEETING SUNDAY 28 OCTOBER 2018 / 10.30am West Plaza Hotel, 110 Wakefield St, WELLINGTON

CHAIRPERSON’S REPORT: Review of operations year end 30 June 2018 Financial accounts year end 30 June 2018 ELECTION OF OFFICERS: APPOINTMENT OF SCRUTINEERS

BOARD POSITION Upper North Island Central North Island Lower North Island Upper South Island Tangata Whenua All of New Zealand GENERAL BUSINESS: 1: Appointment of auditor 2: Subscriptions 3: Other business

CURRENT BOARD MEMBER Stacey Dodd Don Fairgray not seeking re-election Postion vacant Dr Adrian Secker not seeking re-election Position vacant Nikki Stokes

PROXY FORM

FOR THE ANNUAL GENERAL MEETING HELD ON SUNDAY 28 OCTOBER 2018 West Plaza Hotel: 110 Wakefield St, Wellington

PARENT/ CAREGIVER 1: I (Full name of member) PARENT CAREGIVER 2: I (Full name of member) OF (Address) Being registered parents/caregiver of Parents of Vision Impaired (NZ ) Inc and the parents, caregivers of (*Information required to confirm membership) HEREBY APPOINT Who is a registered member of Parents of Vision Impaired (NZ) Inc. and is attending the annual general meeting, or the chairperson of the meeting, to carry my proxy vote.

SIGNED .......................................................................DATE...............................................................................

Please ensure this form is returned to PVINZ Inc NZ, PO Box 513, Waikanae 5025, by 15 October 2018, or email to david@pvi.org.nz

National Office: Level 1, 11 Mahara Place, Waikanae 5025, New Zealand.

P.O.Box 513 Waikanae

National Executive Officer: David Heather 0274 402 073 04 293 8236 david@pvi.org.nz

WWW.PVI.ORG.NZ

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CO N TACT U S CHAIR, LOWER SOUTH ISLAND BOARD MEMBER Mrs Judith Hyslop 216 Helensburgh Road, Waikiri, Dunedin 9010 03 476 6666 027 896 5693 judithhyslop@xtra.co.nz

UPPER SOUTH ISLAND BOARD MEMBER Dr Adrian Secker 13 Brougham Street, Nelson 027 201 1028 adrian.secker@gmail.com

TREASURER, CENTRAL NORTH ISLAND BOARD MEMBER Don Fairgray 027 286 7798 don@pvi.org.nz or penmoraldeer@xtra.co.nz UPPER NORTH ISLAND BOARD MEMBER Ms Linda Moore-Carter 5 Oakway Drive, Schnapper Rock, Auckland 0632 027 320 2693 lmoorecarter@gmail.com UPPER NORTH ISLAND BOARD MEMBER Mrs Stacey Dodd mrsstaceydodd@hotmail.com 021 133 8949 LOWER NORTH ISLAND BOARD MEMBER Postion Vacant

PVI.ORG.NZ

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TANGATA WHENUA REPRESENTATIVE Mr Joe Graham 13 Blakewell Lane, Hamilton 027 612 1507 joe.graham@twoa.ac.nz ANYWHERE IN NEW ZEALAND BOARD MEMBER Ms Nikki Stokes 53a Queen Road, Bellevue, Tauranga 022 693 7653 nikki.stokes@icloud.com or nikkins.08@gmail.com EXECUTIVE OFFICER David Heather Level 1, 11 Mahara Place, Waikanae 5025 04 293 8236 (Home Phone) 04 293 6539 027 440 2073 david@pvi.org.nz

FACEBOOK.COM/PVINZ

We also have a private group for the parents.