parent to parent MAGAZINE â&#x20AC;˘ WINTER 2014
Why the role of the sibling is important to the whole family
enabling good waikato lives Enabling good lives gets the go ahead in the Waikato
Mission Statement Empowering families and whanau of people with disabilities through support and information
Our Services Our services to families include: • Contact with a parent who has a child with a similar condition • Written information on a condition or need • Sibling Support programme • Seminars and training workshops • Advocacy support • A range of family support programmes • Video conferencing services • altogether autism - specialist autism information service
Contact us Parent to Parent operates a network of 11 regional offices throughout New Zealand.
PO Box 234 Waikato Mail Centre Hamilton 3240
0508 236 236 +64 7 853 8491
BOARD MEMBERS: Helen Johnson (P), Martin Gallagher (VP), Susan Warrington, Peter Campbell, Andrea Lee, Jim Craig. Patron: Rob Hamill Life Members: Heather Alford, Linda Davies, Sally Duncan, Ian Evans, Janice Gordon, Helen Henderson, Ray Murray, Gwen Sadler, Russell Wilkinson, Christine Zander. The views expressed in this publication are not necessarily those of Parent to Parent New Zealand Inc.
From the Chief Executive Welcome to the winter edition of Parent to Parent magazine. In this issue we share snaps from the national office official opening, and look at the valuable contribution of the Sibling Support programme. The highlight of the year so far has been the official opening of Parent to Parent National Office’s new premises by the Minister of Disability Issues Hon. Turiana Turia. We were honoured and privileged to have Minister Turia come to Hamilton for this event. It is under her leadership that the disability sector is going through significant transformation, that will empower people with disabilities and their families in a way that has not previously been possible in New Zealand. Minister Turia retires later this year and we thank her for her leadership and advocacy and for Enabling Good Lives, which is already making the lives of people with disabilities and their families in the demonstration areas so much better. In this magazine we have featured the valuable work of Parent to Parent’s sibling programme, SibSupportNZ. The chance to connect with others who understand continues to be an important part of the lives of the young people who attend. It is so rewarding to see the children continuing on to become sibling leaders, and some moving on to become facilitators, which ensures that the programme is a safe and appropriate environment for the siblings. June 15 to 21 is volunteer week and an opportunity to publicaly acknowledge the work of over 500 volunteers who play a critical role in the support we are able to provide as an organisation. Our sincere thanks to all Support Parents, sibling leaders and volunteers who support our staff at our national office, and regional offices across New Zealand. Parent to Parent Magazine is now available in digital issues, and at the back cover you will find a tear off slip where you can opt to receive your next issue digitally. Please take a few moments to fill in the free post slip, or respond at our website www.parent2parent.org.nz Anne Wilkinson Chief Executive Parent to Parent New Zealand
parent to parent MAGAZINE â&#x20AC;˘ AUTUMN 2014
Parent to Parent New Zealand hosted the official opening of the new National Office in Hamilton in March. The Hon. Tariana Turia unveiling the plaque as one of her last official duties as minister for Disability Issues.
The sibling relationship is one that will often be the longest lasting in a disabled personâ&#x20AC;&#x2122;s life. The sibling support programme was created to nurture and develop this relationship.
Sibling facilitators are a fundamental part of the sibling support programme, for whom without the programme would not be as successful as it is. Nick Wilkinson gives his perspective on being a facilitator, and the benefit of the Sibling Support programme.
Following the success of the Enabling Good Lives demonstration in Christchurch, government has approved funding to provide the Enabling Good Lives support model in the Waikato.
Empowered women in the Bay of Plenty
13 Technology 14
official opening parent to parent’s new national office In March, Parent to Parent New Zealand celebrated at the official opening of the new National Office in Hamilton. The celebration was attended by a number of political officials from local and national government, as well as the Parent to Parent national board and other members from the Waikato disability sector. The Hon. Tariana Turia (minister for Disability Issues) officiated her last official duty as Minister for Disability Issues by unveiling of the plaque that marked the occasion; the Minister announced her retirement from politics some weeks before the opening ceremony. In the past, most Non-Government Organisations (NGOs) were based in Wellington to remain close to the seat of government. Thanks to modern technology and modern communication methods, NGOs are now able to establish themselves in other centres around New Zealand. Her Worship Mayor Julie Hardaker spoke highly of Parent to Parent for choosing Hamilton as its base of operations. Parent to Parent’s patron Rob Hamil spoke of how he came to learn of Parent to Parent’s service through experiences raising a child with a health impairment, and how valuable the service was to him and his family. Parent to Parent’s National Office is now based in the AMI Building in the centre of Hamilton’s central business district, which was coincidentally the same building that Parent to Parent was based from in the early 1990s. The office space is the base of operations for the 15 national office employees, and the office for Parent to Parent Waikato. The building is one of many circa 1960 buildings in central Hamilton that have been refurbished to a high standard by property developers Stark Properties. The move to the new premise was made due to rising operational costs at Parent to Parent’s previous location in Liverpool Street. Parent to Parent Chief Executive, Anne Wilkinson, says she is extremely happy with the new office space. “Over the past 30 years, Parent to Parent has developed from an operation run from someone’s spare bedroom to a national organisation supporting thousands of families each year. This new office space will provide a comfortable and productive modern office space for Parent to Parent staff, who work very hard to deliver our services” Mrs Wilkinson says. “The office is on level three of the AMI Building at 420 Anglesea Street, Hamilton Central. We would love our members and Support Parents to pop up and take a look if they are in the area”.
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Anjum Rahman and Hon. Tariana Turia (Minister for Disability Issues) Parent to Parent staff Rae Guard and TeReo Hughes
Rob Hamil (Patron) and Susan Warrington (board member) Martin Gallagher (board member) and Mayor Julie Hardaker Tim McIndoe (MP Hamilton West), Martin Gallagher (Vice President), Claudette Hauiti (National List MP), HMayor Julie Hardaker, Helen Johnson (President Parent to Parent), David Bennett (MP Hamilton East).
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WHY SUPPORTING SIBLINGS CAN BENEFIT THE ENTIRE FAMILY When a child is born with or diagnosed with a disability, the whole family is impacted. Although parents are the primary caregivers for a child with a disability, the siblings are also greatly impacted. The presence of a brother or sister with a disability is considered stressful, as research and lived experience can tell us, but this can also have many positive effects on both the sibling with and without a disability. Children who have a sibling with a disability are often well behaved, responsible and compassionate. They often have to grow up quickly, learning that ‘life is not fair’ before other children of their age, and become aware of the realities of financial hardship, fear, and recognition that their parents can’t ‘make things better’ far earlier than expected. In general, young children have more concern for themselves than the world around them - they have little understanding about how things affect others. Once they attend school, children begin to see and understand how others see and experience things, and their sibling’s differences become more apparent. When siblings become adolescents, they may be embarrassed by their brother or sister, and then feel guilt for this embarrassment. Siblings may also feel burdened by
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responsibilities (such as completing additional chores), but also feeling they must protect their sibling from the teasing and criticism of others. The sibling relationship is unique. Unlike the parents, siblings of children with disabilities don’t usually have a concept of life without living with someone who has a disability. The relationship is often longest lasting, because it continues past the death of the parents; siblings share a history between them that is more similar than they will experience with anyone else. The acceptance of the sibling with a disability by the sibling without a disability is imperative in the overall development and self esteem of both children. Siblings are the first people we learn to fight, compromise, and makeup with. Non-disabled siblings are often fearful
The Johnson family have been a part of SibSupport for a number of years
Siblings at the 2013 Nelson SibCamp enjoying some recreation time
of adding to the family stress level, and hold their feelings inside. Open discussion of these feelings helps prevent siblings holding in feelings until they fester into explosive anger, depression or physical complaints. Siblings will ask questions that will become more detailed as they grow older, and they may have a strong need to have as much information as they can about the disability, which can endure their entire lifetime. It is important for them have answers to these questions, and they need to be told specifically about the limitations and strengths the disability can cause. Having the information puts fears into perspective – in most cases, the fear of the unknown is worse than the reality of the truth. Without knowledge, non-disabled children may feel that parents are not protecting their sibling, that others may hurt them, be fearful of medical professionals and have difficulty trusting others. The Parent to Parent SibSupport programme is designed to help equip siblings to deal with the good and the challenging aspects of growing up with a brother or sister with a disability. The social aspects of the programme provide siblings with an opportunity to expand their support network by meeting and making friends with other children who have similar home situations. Meeting other children who share these similarities not only helps to remove the “I’m the only one in the world” feelings, but puts their home life into context, and gives a feeling of normality to their living situation. The programme’s main feature is the SibShop; this is a workshop where siblings are encouraged to openly voice any feelings, frustrations or questions in a safe and confidential environment. SibShops are facilitated by specially trained facilitators who are also siblings of people with disabilities, and can address any issues from participants from the perspective of someone who has lived a similar experience. In order to ensure that siblings feel completely safe to speak openly, the SibShops are closed to anyone other than the siblings and the facilitators. Siblings attend the SibShops in groups according to their age bracket, and the facilitators engage and encourage siblings to participate in the sessions using a series of activities and games applicable to their age. Every group is different, and the
facilitators are skilled in ensuring that the participants only share what they are comfortable with, and no expectations are imposed. Many of the children come back to the programme on an annual basis, and some progress through to becoming a sibling leader and even facilitators. The sibling leaders are an important aspect of the SibSupport programme as they provide a ‘big brother or sister’ mentor role, and help the members of the group to establish friendships and bonds that will last well beyond the duration of their time in the SibSupport programme. The sibling leaders join in all aspects of SibSupport with their groups; becoming a Sibling Leader is the natural progression for children who outgrow the SibSupport programme, but want to remain involved. SibSupport is a programme that recognises the importance of the sibling’s role in the good life of their disabled family member, and equips siblings to grow up with a positive view of the future of their family. SibSupport introduces siblings with a disabled brother or sister to groups of children with similar experiences , and helps siblings to view their situation from a much more realistic perspective. This perspective allows siblings better function within their family, and provides the unique support for their brother or sister, that only a sibling can provide.
parent to parent holds regular sibsupport programmes nationwide. 2014/15 programmes are planned for auckland, waikato, Taranaki, manawatu, gisborne/hawkes bay & canterbury. check with your regional co-ordinator for dates and for other upcoming programmes, or visit parent2parent.org.nz sibsupport programmes are provided at no cost to families. some travel assistance may also be available.
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the sibling support programme from the perspective of a sibling facilitator Nick Wilkinson is one of Parent to Parent’s most experienced sibling facilitators, and has been involved with the programme since 1995. Nick has helped to develop the programme, trained a number of sibling facilitators and most of the sibling leaders currently involved with the programme today. Nick gives his perspective on the sibling support programme and facilitation. Wikipedia defines a facilitator as ‘someone who helps a group of people understand their common objectives and assists them to plan to achieve them without taking a particular position in the discussion’. This sounds simple enough but I’ve been involved in facilitating many diverse groups of individuals for my years with Parent to Parent. Be it a group of 8 year old children or people in their 60’s, what I have come to learn is although people may have similar objectives, their objectives are not always the same. Every individual in a group is unique and every group is diverse and has different needs or expectations.
Being a sibling of someone with a disability and having the job that I have is a privilege for which I am very grateful. I am also lucky to live in a country where programmes such as SibSupport and Second Generation are available with no charge to people who want to access these services. If you or anyone you know would benefit these programmes, or to learn more about them, contact Parent to Parent. - Nick Wilkinson
To me, facilitation is a combination of ensuring everyone gets their say, validating people’s input, guiding the communication of ideas in a common direction and most importantly, not hearing, but actually listening and taking on board what people have to say. There is a diverse age, socio-economic and cultural backgrounds represented within the Parent to Parent programmes I facilitate, from SibSupport to Second Generation. While it’s important to have a basic understanding and knowledge of the participants, it’s also important to dismiss any preconceived notions, biases or assumption. While I do arm myself with tools and activities that I feel will benefit the group, it’s important to be adaptable. Each activity is simply an instrument to encourage an open and frank conversation. If I go into a workshop with several activities and at the end of the session I have only done one, then that is a successful workshop where the tool for promoting conversation and the exchange of ideas has worked. Working specifically with people who have a sibling with a disability at different stages in life is a humbling experience. I have meet many people over the years from a wide range of ages. I have heard stories of inspiration, confusion and despair. What these programmes give people is particular tools, validation of their feelings and most importantly a chance to talk to other people who know what they are going though.
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Nick (left) with sibling leaders Keegan Wall and Jacob Linn at the 2013 Nelson SibCamp
C U S TOMI S E D A U T IS M S P E C T R U M T R A IN IN G Altogether Autism provides evidence based, tailor made information packs through specially trained researchers and information officers who are advised by a team of professionals (including clinical psychologists, paediatricians, applied behaviour analysts, psychiatrists, speech and language therapists, occupational therapists, Ministry of Education and others) with expertise and experience in autism. Prism Professional Development series has been developed by Altogether Autism specifically for professionals working with autism spectrum disorders. The information presented in this series is provided by experts working in the field, and presented by trained facilitators who have an in depth knowledge of the autism spectrum and associated issues.
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Prism Professional Development series is completely customisable to your organisation’s requirements.
Choose the time frame your organisation would like the material delivered. Prism Professional Development series can be delivered in half day, full day, or multi-day courses. Choose the location you want your courses delivered. Prism Professional Development series can be delivered in your workplace for your staff exclusively, or in a shared centralised venue.
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enabling good waikato lives government allocates funding to extend the enabling good lives approach
The government has allocated $3.82 million to extend Enabling Good Lives support approach to the Waikato region from 2014 to 2017. Enabling Good Lives Waikato is going to be designed and hopefully implemented by the end of 2014. Enabling Good Lives is a partnership between the disability sector and government agencies, aimed at long term transformation of how disabled people and families are supported to live everyday lives. The primary focus of Enabling Good Lives is to enable disabled people and their families to have greater choice and control over the supports they receive and the lives they lead. In 2012 a group of providers, disabled people and their families and whanau were consulted about how the Enabling Good Lives approach could be applied in the Waikato; from this, a leadership group was established. The leadership group represents three forums, represented by: • Four people with disabilities, representing people with disabilities • Three family members of people with disabilities, representing the famlilies, and • Three representatives from providers in the Waikato The leadership group meets with representatives from the ministries of health, social development and education. The leadership group have worked together to design a plan of how Enabling Good Lives could be implemented in the Waikato region, taking into account lessons learned from the Christchurch demonstration and Waikato region specific circumstances. People in the Waikato region have been participating in the Choices in Community Living scheme for a number of
months now, which is a Ministry of Health initiative that operates in a similar manner to that of Enabling Good Lives. Because of the synergies between Enabling Good Lives and Choices in Community Living, an option may be to merge these two schemes together. Once the plan has been designed and agreed upon by the leadership group, it will be forwarded to the ministerial committee for sign off. It is hoped that Enabling Good Lives Waikato can be implemented in time for Christmas 2014. What is Enabling Good Lives? Enabling Good Lives is a new way of funding disability support, which offers disabled people more control over the money allocated to them, and more choice over the supports they receive. Under Enabling Good Lives a disabled person will be allocated a personal budget that is made up of contributions from the Ministry of Health’s Disability Support Services (DSS), Ministry of Social Development and/or Ministry of Education, depending on their eligibility. The disabled person has choice and control over how they use their personal budget to assist them to achieve their goals and aspirations in having a good, everyday life. They also have a choice over who supports them, and when they receive support. Enabling Good Lives is currently being demonstrated in Christchurch, and funding for the Waikato will commence in July 2014.
A brochure detailing the Enabling Good Life support system has been produced by the Office for Disability Issues, available from Parent to Parent.
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You can also view an electronic version of the brochure, and the latest newsletters at parent2parent.org.nz/Enabling-Good-Lives
a group to help women find their inner strength Parent to Parent Coastal Bay of Plenty have started a group aimed at empowering women. With activities like yoga and running, the group is aimed at helping women to find their inner strength and move forward Sometimes the only way to move forward is with one step at a time. The Empowered Women’s classes are about doing just that, helping women to find inner strength and resolve to keep moving forwards, while supporting those around them. Parent to Parent Coastal Bay of Plenty have started an Empowered Women’s Group which includes a weekly running group and Yoga class, with plans to expand to morning teas with guest speakers talking about topics such as managing stress and nutrition. The group’s members are all linked by a closed Facebook group where members share inspirational quotes, ideas, and support one another. Yoga classes are offered because Yoga teaches inner strength, breathing, relaxation techniques to let go of anxiety and stress, improve sleep, and improve inner well being. Classes are held every Tuesday at 9:20am at Yoga Ananda Studio, Village on 17, Tauranga. A running group has been established, as studies show that people who exercise regularly benefit with a positive boost in mood, and lower rates of depression. Regular exercise has been proven to: Reduce stress, ward off anxiety and feelings of depression, boost self-esteem, improve sleep, strengthen heart, increase energy levels, lower blood pressure, reduces body fat and helps us look fit and healthy. Parent to Parent have been fortunate enough to have the expert services of a personal instructor to help members of the group who are keen to learn how to excercise correctly. A basic beginner’s class meets every Wednesday at 1.00 pm from the Parent to Parent Offices, Village on 17, Tauranga. This class is for absolute beginners who have not done any recent regular exercise, and can commit to a nine week training schedule. This 20 minute class is a mix of walking and jogging with other women of all ages and sizes. Maureen, the personal instructor, gives advice and tips while guiding you very gently to be able to run at your own pace. If you are interested in finding out more or joining the Empowered Women classes, contact Parent to Parent Coastal Bay of Plenty. Phone 0508 236 236 www.facebook.com/parent2parent.cbop
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The IHC Library of New Zealand The IHC Library is a very well resourced treasure trove for anyone living in New Zealand wanting information about intellectual disability. We have resources for every level of interest and ability, as well as books and DVDs for children.
Parenting a child with development delay Maud Roegiers & Julia Frank-McNeil “Parenting a Child with Developmental Delay provides an explanation of developmental delay - including assessment, symptoms and prognosis - and what this term means for children. It stresses the importance of focusing on the child as a whole person, including their personality, lifespan development, emotional well-being and life experiences, and not just the child’s condition. The strain placed on the family as a whole that living with a child with developmental delay can cause is addressed and case studies throughout provide ‘real’ examples of children and parents/carers living with a diagnosis.” - PUBLISHER’S WEBSITE This book is a fairly easy read as the authors have steered clear of using a lot of jargon or medical language. While it is not a very in-depth book, it does provide reassurance and encouragement for parents who are looking for answers as to why their child is not meeting the typical developmental milestones and how they can help their child to reach their full potential. The introduction says this book is “concerned with the special needs of children, particularly fostered and adopted children...” However the stories and strategies are just as applicable in any family situation and I am sure that readers will appreciate the input and experiences of other parents. ID 29966
New Free Book
The IHC library is accessible in person on level 14, Willibank House, 57 Willis Street, Wellington.
IHC, with funding from the Freemason’s Charity, offers a free book to families who have a child with an intellectual disability aged 0 - 24 years.
By email email@example.com or free phone 0800 442 442.
This scheme now includes a sixth book, “Believing in Better: steps to an ordinary life for your family member with an intellectual disability: a workbook.”
When you request an item we courier it out to you free of charge. The only cost to the borrower is returning items to the library. If you need more time we can renew items.
This New Zealand book, published in 2010, is for families of teens and young adults 13-24 years of age. More information and a request form are available online at www.ihc.org.nz or phone 0800 442 442.
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To search the entire online catalogue of the IHC Library, visit
Technology Corner New technological advances at Parent to Parent
Flex eLearn - Parent to Parent’s online learning system We are now in the final weeks until the first release of Parent to Parent’s online learning system - Flex eLearn. The first course to be made available online will be the Support Parent Training Course. After thorough internal testing and trials, the Flex eLearn system was introduced to 18 of our nationwide trainers. The trainers have given their feedback, and the course is now in the final stages of development. The first eLearning intake will be in July, and the learners will be from the Waikato, Auckland and Northland. Support Worker eLearning A Parent to Parent/Imagine Better joint venture
Find My Friends Available from the App Store Free Find my friends is a great app that enables you to monitor the location of your friends who have a smart phone with location systems enabled. Although developed as a social tool, parents can use this as a tool to monitor the movements of their child from their phone or PC. The app requires that both you and the person you wish to ‘follow’ have the app downloaded, and then you need to add the person you wish to follow as a friend - they then need to authorise you to follow them.
Parent to Parent are in the process of developing an eLearning system for support workers who are supporting people with disabilities through individualised funding. The programme is aimed at developing person-centred approaches to supporting people with disabilities achieve their goals.
The app will display the location of the people you are following on a map. You can view their location from an iPad or PC with the app installed.
Parent to Parent and Imagine Better will be developing new, and where applicable purchasing ready-made, courses that will be accessed from the Parent to Parent website. There will be 10 modules in total.
To find out more search for ‘Find my friends’ in the App Store or Google Play store.
While this app is for iPhone only, a similar version is available for Android from the Google Play store.
The pilot scheme is set to start in a few weeks, with 23 support workers and family carers enrolled in the course. The University of Waikato is assisting with the development of evaluation systems to ensure that the accreditation process is sound. parent2parent.org.nz receives another overhaul Parent to Parent has been lucky to receive an in-kind donation from HyperCube web developers in Hamilton, who have done a wonderful job updating the look and functionality of the Parent to Parent website. The updated site features the capacity to host a number of secure login functions, which will be utilised by our eLearning programmes. The site also has a multi-function online forum as well as an electronic library. Keep an eye on the site, as we continue to release the new features which will mean better accessibility for the families we support.
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Parent to Parent events in your region June Fri 11 Altogether Autism Network Meeting Village on 17 Tauranga 10am - 12pm Find out about the Altogether Autism service, and your local coordinator. Feedback gaps and issues, raise awareness of autism spectrum disorders and meet others. Open to anyone with an interest in autism. Fri 11 Altogether Autism Network Meeting
Tue 24 Altogether Autism Network Meeting Community House Rotorya 10am - 12pm Find out about the Altogether Autism service, and your local coordinator. Feedback gaps and issues, raise awareness of autism spectrum disorders and meet others. Open to anyone with an interest in autism.
CCS Disability Action Oamaru 12 - 1:30pm
Fri 18 - Sun 20 Second Generation Workshop Ibis Hotel Hamilton
Find out about the Altogether Autism service, and your local coordinator. Feedback gaps and issues, raise awareness of autism spectrum disorders and meet others. Open to anyone with an interest in autism.
A workshop for adult siblings of disabled people and their parents, enabling families to plan for the future good life of their family member. Workshop, accommodation and meals provided at no cost.
Tue 17 Coffee Morning Dunedin
Sat 26 Personal Support Course
For parents of children 0 - 10
CCS Disability Action Dunedin 9:30am - 4pm
An informal meeting for parents of children with disabilities aged 0 - 10 years. The Hub 158 Oxford Street Dunedin. Young children very welcome. RSVP to Parent to Parent Otago 0508 236 236.
A course designed for families that looks at stress management, grief, family resilience and growing your support networks. Lunch is provided. This course made possible by thinkdifferently.org.nz
THU 19 Sex and Puberty in Adolecents with a Disability
Mon 28 Puberty Education
Community House Invercargill 7:30pm
Community House Rotorua 10am - 12pm
RSVP: Louise Pearman (Family Planning) Phone 03 477 5850 Ext 3 firstname.lastname@example.org
A workshop for parents and caregivers of children with a disability to explore the effects that puberty on young people with a disability. All welcome. RSVP to Parent to Parent Central Lakes 0508 236 236.
Sat 21 Personal Support Course Parent to Parent Lower Hutt 10am - 4pm A 6 hour course for families that covers grief, stress, building your support networks and family resilience. Join other parents for a supportive day. This course made possible by thinkdifferently.org.nz
September Fri 12 - Sun 14 Second Generation Workshop Kelvin Hotel Invercargill A workshop for adult siblings of disabled people and their parents, enabling families to plan for the future good life of their family member. Workshop, accommodation and meals provided at no cost.
For a full up to date list of Parent to Parent events, or to register for any of our events online, visit www.parent2parent.org.nz and click â&#x20AC;&#x2DC;eventsâ&#x20AC;&#x2122;. 14
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parent to parent MAGAZINE
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Parent to Parent Magazine is published quarterly with a circulation of 1,200 families & organisations. Parent to Parent magazine is now available as both paper and online editions. Parent to Parent Magazine paper edition is free to families, and for a $20 annual subscription for businesses/organisations. Online edition is available free to organisations. complete the form below or at parent2parent.org.nz to start your subscription today.
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