ANNUAL
REPORT
2015-2016
Walking the journey with families/whanau From the time a baby is conceived, a family maps the future for that child.
or have a million questions afterwards and not have anyone to ask.
Parents, siblings, step-parents, grandparents, relatives and friends welcome the newborn into the whanau and walk with them – nurturing the toddler years, into school, through adolescence, career choices and out the other end as an independent adult.
We provide up-to-date, evidence-based information tailor-made to that child’s condition/s in plain language, and in other languages. We provide information on over 3600 conditions, and it’s free for parents, family, early education, schools, workplaces and anyone living, studying or working with someone with a disability.
However, sometimes in their ideal timeline the unexpected happens, either through illness, an accident, or diagnoses of a disability/medical condition; seen physically, in behaviour, or hidden in the brain. Families can find themselves in disbelief, lost in unfamiliar territory. It can happen to any family at any time – suddenly faced with rethinking their ‘ideal’ scenario. But for 33 years Parent to Parent has been opening doors to show families that their lives can still be great and full of hope – just different. The not-for-profit was started in New Zealand by parents of children with disabilities and health professionals to help families feel enabled, confident and positive to embark on their new journey. Parent to Parent continues to walk with them, through the ups and downs of life. There are a number of organisations directly supporting children and adults with disabilities, but Parent to Parent supports their wrap-around family; the people they live with, who love them and know their needs best. By supporting families we acknowledge the importance of their holistic wellbeing as a family, as individuals, and as carers and advocates in the lives of people with disabilities. Free information It is common for parents to feel incapable of absorbing complex verbal information at a diagnosis,
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Our library also offers a free service via website or phone. Down the track we also provide information on specific issues surrounding that condition/s, or hundreds of topics such as getting respite support, managing stress, travelling with a person with a disability, or how to help their young adult plan an independent life. No question is too small we won’t respond, or so complex we can’t. This service is unique to Parent to Parent in New Zealand. Vital connections Parent to Parent then connects them with one of its 600+ trained Support Parents nationwide – someone who has a child with the same condition/s, ideally local. Support Parents are further enough along the journey to feel confident to give back to new parents. They have lived experience and can offer that invaluable “we’ve been there too” understanding. Many have adult children who are leading good, full lives. For rare conditions, Parent to Parent may source a parent from overseas. This service is also unique to Parent to Parent in New Zealand.
CONTENTS 4
The year in review
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Key partner relationships
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Regional work
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Services, workshops and courses
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Statistics
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Performane report
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Supporters
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National president and chief executive report The 2015-2016 year in review The past year has been challenging, exciting, and tinged with disappointment with the resignations of our long-standing Chief Executive Anne Wilkinson and National Operations Manager Robyn Smith. Anne has been part of Parent to Parent for 25 years, initially as the Waikato Group Coordinator, then as National Services Coordinator, responsible for ensuring our services developed and maintained relevance in meeting the needs of the parents we serve. There were numerous achievements during this time, but one we know Anne reflects on fondly is the national introduction nationally of the SibSupport programmes, enabling the siblings of children with a disability to meet, share their experiences and develop support skills. In 2003 she became the organisation’s second Chief Executive after founding CEO Shirley Waas. Robyn Smith joined Anne soon after, and assumed the primary responsibilities of ensuring the now fast-growing and diverse service range maintained a high level of quality and integrity. Such was the high regard in which the organisation came to be held – with its unique position of supporting parents – that there were constant requests for sector
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representation on service development, consultation and advisory forums within the Ministries of Health, Social Development and Education. The parent voice was being heard through Parent to Parent. Testament to the work of Anne and Robyn in positioning the organisation as integral to the sector is the fact that their departure has not slowed down the requests we receive to participate in and contribute to leading sector initiatives. Additionally strong relationships have been formed with like-minded organisations working to provide new and innovative services which support and grow the capacity of parents to respond positively to the challenges their families face. We continue to be part of the Family/Whanau Leadership Alliance with talk of it extending to include others and broaden its influence base. We are working closely with the Ministry of Education, developing and discussing involvement in the delivery of a Disputes Resolution Process; a response to families with children with a disability needing support through the education process. We have retained Anne’s expertise through the 2016 change period and she continues to represent the organisation with her ongoing involvement in the Disability Caucus, Enabling Good Lives
working group, and Good Start to Life Sector Reference Group. Our relationship with historical partners SAMS and Life Unlimited also continues, as we jointly delivery the Ministry of Health-funded contracts for the Altogether Autism and Care Matters services, and discuss other forms of collaboration. Substantial growth in an organisation inevitably leads to a need to look at things differently. To support that process, in early 2016 the Board contracted Consultant Noel Cunneen, who has previous management experience in the health and disability sectors. He was to work with management to embed the new structure following the 2015 review, and to review current systems to better reflect the growth and more diverse services being offered. The Board responded to the unexpected dual resignations by contracting Noel as short-term Chief Executive with the dual function of leading the organisation while completing the review work. Following the short-term the Board then asked Noel to remain as the Chief Executive for a further 12 months. He accepted the challenge backed by the full confidence and support of the Board and staff. The Board has embraced his strategy to see Parent to Parent transition into a new era. The first task was to re-establish the management team. In June, Julie Barnett and Guy Ockenden joined the organisation as Executive Manager and National Operations Manager respectively. Julie is an experienced manager within the DHB and NGOs looking to further develop her general management experience, while bringing with her Chartered Accountant status. Guy’s most recent role was as Chief Executive of NZ Riding for the Disabled for 11 years. His experience in managing regional branches and significant fundraising
programmes is already proving of benefit to Parent to Parent. They join Sue Pairaudeau, Business Development Manager, constituting a very formidable and experienced management group. The Board are confident this new management team will direct the required changes, plus enhance Parent to Parent’s status in the sector, building on the excellent work of the past management. Already there have been discussions around potentially exciting initiatives to occur on the back end of the launch of our new logo and associated branding. The challenges of maintaining a strong financial position, especially given a very difficult year with the most significant deficit on record, are very real. The Board and management recognise the importance of generating income through a wider range of fundraising and sponsorship avenues, and decreasing the reliance on Ministry contracted income which accounts for over 60% of revenue. At the same time we need prepare ourselves for a new contract environment following a review process within the Ministry of Health, so our current highly valued services are retained and new complementary services resourced. Management and staff have accepted the Board’s challenge, and look forward to a very exciting period ahead. The Board and management acknowledge that the staff have been absolutely professional, hard-working and responded positively to what could easily have been a very unsettling period given the magnitude of the changes. This is a group of people who very much care about what they do and the quality of the support they provide. In addition to a strong, committed staff group we recognise also the need to provide a safe and quality working environment. As part of the
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challenge in front of us we need to enhance our technology to provide an efficient and effective workplace. One which will also improve the access families have to our services. We need to revisit the development that was initiated a few years ago to provide learning and training opportunities through media which maximise access, with a particular focus on an online delivery capability and electronic communication. We continue to receive very positive feedback to the workshop and training we deliver. There are opportunities to extend the reach of these courses, but we should never (and will not) compromise the service which provides oneto-one support from a Support Parent who has lived experience – our most important role. This unique service continues to be the most effective and authentic support available, according to feedback from families. This year 354 families benefited from being connected with a Support Parent. The challenge is to stay current and move with the times, while not leaving people behind. Sincere thanks to all Support Parents for giving their time and energy to support other families. Parent to Parent would not be able to support the hundreds of families nationwide without our Support Parents and other volunteers. Acknowledging those who have contributed significantly over an extended period to the work of Parent to Parent is hugely important, and best done through bestowing Life Membership. In 2016 this status was awarded to
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J B Munro, and Anne Wilkinson, fittingly at her farewell. The contribution of Board Members must also be acknowledged. It has been a very busy year providing governance during the current changes with members being called on often for their support and time. They have unhesitatingly done so in a way which illustrates their commitment to and belief in our work. We know they will continue to do so as the work to achieve the relatively new and innovative organisational goals to ensure the organisation is ‘fit for purpose’ picks up momentum again after a disrupted period. We invite discussion from within the sector and from without re potential partnership and sponsorship to assist the development of our capacity to deliver services to parents. Parent to Parent enjoys strong relationships with other family and disabled persons’ organisations and thank them for the value and support they bring to our work. We need to widen the net and engage more and different types of organisations and businesses in the support of that work. Finally it is our pleasure to be involved in an organisation with people who put the organisation and the important work we do, first. We look forward to an exciting and rewarding year ahead.
Noel Cunneen, Chief Executive Helen Johnson, National President
Key partner relationships We work with other services and programmes like Imagine Better, Life Unlimited, Ideas Services (formerly IHC), SAMS (Standards and Monitoring Services), Think Differently, and Enabling Good Lives.
Together towards tomorrow
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Connecting carers with peers.
For over three decades Parent to Parent New Zealand and SAMS have supported families to have key roles in developing resources and supports.
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Equipping carers with skills to make the best use of opportunities.
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Creating and supporting the development of local carer leadership groups.
We are both well-positioned as credible, independent family led national organisations with a very similar values base. We have developed different approaches to achieving similar objectives. Historically, SAMS has focused on family members being the key to evaluation processes and developing family leadership, and Parent to Parent had a focus on developing a national information and support network.
We don’t underestimate the challenge of this – diverse communities, an evolving maze of options, and families who are sometimes exhausted by their day-to-day responsibilities. However, we are up for this challenge and are pleased to be working together.
In 2009, SAMS and Parent to Parent became founding members of the “coalition”. Together, we worked to make sure disabled people and families are the key people to influence Government policy. Parent to Parent has established a diverse and comprehensive national network. This uniquely equips Parent to Parent to offer families information, connection with peers, local support and forums for development. When combined, Parent to Parent and SAMS offer families an array of options for information, connection and influencing.
Mark Benjamin Chief Executive SAMS (Standards and Monitoring Services)
In 2015 Care Matters was formed. Care Matters is a service jointly delivered by SAMS and the Parent to Parent network. There are four main areas of focus: •
Making sure carers get clear and accurate information
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A place to share and get support, have some validation, hear what other people go through, but also to learn practical ways of dealing with the stresses and challenges of being a parent of a child with special needs.
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work
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Regional
So great to meet other parents in similar situations.
We’re nationwide The face of Parent to Parent in communities is our regional team in 11 regional offices servicing the country. This is a group of motivated and passionate people giving of themselves and their expertise to provide support to families/ whanau of people living with disabilities and health impairments. The past six months has seen a few changes to the make-up of regional personnel – we farewelled Karen and Nicola, and welcomed Suzie and Trudi. The multifarious roles of the Regional Team respond to the needs of the parents and families that come to them. Apart from being the direct, face-to-face contact – the local go-to person – the team also provides a number of services to people in their area. This includes courses and activities like Renew workshops, Support Parent training, Sibling Support programmes and coffee groups. In the past year the Parent to Parent team supported 375 new families by providing 406 Support Parent requests and a staggering 3845 information requests serving a wide rage of ethnic groups – up nearly 500 from the previous year. Working together with the Support and Information team, the Regional Team is truly reaching into the wider New Zealand community. What remains clear is that the need for our services continues to grow.
Working with our partners Altogether Autism and Care Matters, we are providing a synergistic approach to assisting families nationwide. Our team wants to grow to provide an even greater level of support for more people. To do this we plan to continue to build and empower our strong volunteer base to reach into more communities, especially where geographical isolation makes connecting with others in the same or similar situation that much more difficult. This growth in services will be supported by an ever-increasing use of social media platforms to connect, inform and support.
Guy Ockenden National Operations Manager
THE TEAM
Northland
Auckland
Janette Allen
Elaine Gutteridge
Waikato
Lynne Hansen
Carol Maynard
Christine Slade
Coastal Bay of Plenty
Central Lakes
Breanna Turner
Manawatu
Debra Broughton
Wellington
Sue Trueman
Sharyn Heathcote
Nelson
Greater Canterbury
Suzie Haynes
Trudi Meyer Laura Lightfoot Andrew Oswin
Otago
Sheryl Davies
Southland
MaryAnn Hughes
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Services, workshops & courses Free information It is common for parents to feel incapable of absorbing complex verbal information at a diagnosis, or have a million questions afterwards and not have anyone to ask. We provide up-to-date, evidence-based information tailor-made to that child’s condition/s in plain language, and in other languages. We provide information on over 3600 conditions, and it’s free for parents, family, early education, schools, workplaces and anyone living, studying or working with someone with a disability. Our library also offers a free service via website or phone. Down the track we also provide information on specific issues surrounding that condition/s, or hundreds of topics such as getting respite support, managing stress, travelling with a person with a disability, or how to help their young adult plan an independent life. No question is too small we won’t respond, or so complex we can’t. This service is unique to Parent to Parent in New Zealand.
Vital connections Parent to Parent then connects them with one of its 600+ trained Support Parents nationwide – someone who has a child with the same condition/s, ideally local. Support Parents are further enough along the journey to feel confident to give back to new parents. They have lived experience and can offer
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that invaluable “we’ve been there too” understanding. Many have adult children who are leading good, full lives. For rare conditions, Parent to Parent may source a parent from overseas. This service is also unique to Parent to Parent in New Zealand. Feedback from families demonstrates that this service is most effective. By supporting parents through their challenges, they are better equipped to focus on the gifts, skills and strengths of their child, and not let the disability block the pathway to a bright future.
A new world Our Renew workshop for parents new to the world of disability aims to give them hope; to not allow the disability get in the way of a great future and life for their child and family. The feedback we get is incredible – parents come away buzzing with the mindset that they really can get through tough times, think big, have hope and create meaningful everyday lives for everyone in the family.
Potential Our IEP (Individual Education Plan) workshops aim to help parents/caregivers work with schools and external providers to ensure their child gets the supports they need to fulfill their potential while at school.
Camps and courses We run camps and programmes for the brothers and sisters aged 8-18 of kids with disabilities. All SibSupport programme leaders have siblings with disabilities, and have been there too. SibSupport acknowledges the extra effort their “different� home life demands, and that they are often their disabled sibling’s biggest fan and hero. It gives them the chance to talk about issues such as feeling left out at home or bullying at school. The relationship between siblings is vital for happy families, and they will have the longest life relationship as parents age and eventually pass away. With a maturity beyond their years and the gift of empathy, it is no surprise that many gravitate towards employment in the health and disability sector.
The services, developed by carers for carers, assist people who support people with disabilities nationwide. The Carer Matching Service and Care Matters both aim to ensure carers are connected, informed and able to access relief care. Care Matters, delivered by SAMS and Parent to Parent, is a learning and wellbeing service providing face-to-face events, web-based resources and a freephone service. The Care Matters freephone 0508 236 236 operated by Parent to Parent, connects callers to its existing network of local knowledge and support, and its facilitators keen to ensure face-to-face learning opportunities relevant to local interests and needs.
Our work never ends Altogether Autism With Life Unlimited we jointly run Altogether Autism services from our national and 11 regional offices. It provides specialist information and access to professionals, as well as workshops for educators, health professionals and support people working with people on the autism spectrum. It is based on theoretical, academic and clinical knowledge and delivered by specialist facilitators.
While our Second Generation workshop helps facilitate the process where aged parents pass the baton of care/advocacy on to younger family members, we are then there to support the new carers.
Care Matters Two new national services to support family carers were launched this year by the Ministry of Health for delivery by SAMS (Standards and Monitoring Services), Parent to Parent, and Carers New Zealand.
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Statistics
Total Information requests Parent to Parent Altogether Autism Families National requests Regional requests Support Parent connections National connections Regional connections Families Website Session Page views
3845 788 3057 1197 2921 925 406 251 155 354
18,810 48, 823
Facebook* Total likes Total new likes
1877 370
Twitter Total followers
522
*This data is for the Parent to Parent national page only. Regional groups are operating individual pages independent of the national page.
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Very, very impressed, really relevant, very appropriate and well researched information. I have recommended you to two sets of parents already.
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Thank you, the information was amazing. We broke down in tears when we saw it all and we appreciated all the work that had gone into putting it together. By far the best information we have received in the time that we have been looking.
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I went to a SibShop and it was amazing and helpful. You open up about things you wouldn’t normally.
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An appreciation of the value of networking, friendships and the power of listening.
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I liked the Sibshop because i got to share my brother’s and sister’s abilities.
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Performance report for the year ended 30 June 2016
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Parent to Parent NZ acknowledges the support of the following organisations that provided funding in the 2015/16 year Lotteries Gallagher Charitable Trust Blue Sky Lion Foundation StarBuddy Charitable Trust COGS - DIA South Taranaki Dragon Community Trust Trust Waikato Eastern & Central Community Trust Four Winds Foundation COGS - North Taranaki Todd Foundation The Southern Trust Catholic Care Life Unlimited 32
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I truly enjoyed the weekend - the atmosphere was supportive and I learned a lot. Would love to be part of your organisation in the future.
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Was good to look at getting balance back into our lives and for our son as I feel we have isolated ourselves over the years without even knowing.
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Really found it great to meet others. Parent to Parent is a unique organisation.
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national president helen johnson national board martin gallagher, jim craig, peter campbell, andrea lee, susan warrington patron rob hamill life members ray murray, linda davies, russell wilkinson, janice gordon, shirley wass, sally duncan, gwen sadler, christine zander, ian evans, helen henderson, heather alford, tariana turia, Anne Wilkinson.
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PARENT TO PARENT NEW ZEALAND INC PO BOX 234 HAMILTON 3204 +64 7 853 8491 PARENTTOPARENT.ORG.NZ
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