Parent to Parent New Zealand

parent to parent MAGAZINE • SUMMER 2014

glen goes flatting

choices in community living is offering independent living

enabling good lives How enabling good lives is working for the andrell family

Parent to Parent 30th Anniversary photos A new book to show how Indidualused Funding can enable your family member to live independently Family Leadership Alliance starts projects to change attitudes across the country

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.

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From the Chief Executive Welcome to the first Parent to Parent magazine for the year. 2013 was a very significant year for Parent to Parent New Zealand as we celebrated our 30th anniversary.

To celebrate this we co-hosted, with Imagine Better, the “More to Life than Services” conference which was followed by a reunion. The conference was an overwhelming success.

Most of the presenters were disabled people and family members and feedback from participants indicted that it was a most valuable experience giving practical advice on building good and meaningful lives.

Parent to Parent’s 30th reunion was a highlight. This celebration has given us the opportunity to reflect and learn from our very honourable history; it has renewed our inspiration and given us the opportunity to acknowledge the enormous contribution of so many.

PO Box 234 Waikato Mail Centre Hamilton 3240

Following this time of celebration and acknowledgment we began 2014 with renewed energy and anticipation for a better future for families.

national@parent2parent.org.nz

It will be another big year for Parent to Parent and for the sector with the Enabling Good Lives work in transforming the system; so that people with disabilities and their families have control of their lives making it easier for them to create good lives for themselves.

0508 236 236 +64 7 853 8491

parent2parent.org.nz

facebook.com/parent2parentnz

twitter.com/parent2parentnz

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

As you will see later in this magazine, Imagine Better, SAMS and Parent to Parent have developed a family leadership alliance and are working together to offer training and development for families throughout the country. This work has been made possible by funding obtained from the Ministry of Social Development’s ‘Think Differently’ fund.

This is an exciting opportunity for Parent to Parent to work alongside two like-minded organisations, and make a real difference in the lives of families right across New Zealand.

Keep an eye on our events diary for details of programmes coming to your region.

I hope you enjoy reading the summer edition of Parent to Parent magazine.

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.

Anne Wilkinson Chief Executive Parent to Parent New Zealand

parent to parent MAGAZINE • SUMMER 2014

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Parent to Parent celebrated 30 years with a reunion in Auckland in November 2013. See the photos and highlights of the day.

Choice in Community Living is a new model offering alternatives to residential services, and choice and control over where people with disabilities choose to live. Glen Terry is now flatting with his best mate, and loving every minute of it.

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The Andrell Family of Christchurch are participating in the Enabling Good Lives demonstration, and now have great hopes for a good, everyday life for their two daughters.

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A new resource from the Paradigm Initiative is helping families to imagine better for their family member’s good life, and gives practical advice and learned experience for families thinking about helping their family member with a disability into an independent living situation.

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choices in community living

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enabling good lives - the progress so far

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boccia - an all inclusive sport

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family leadership alliance - a collaborative approach to social change

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sibsupport nz - 19 years and still helping 100s of siblings nationwide

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second generation - a workshop for adult siblings

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book review

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parent to parent events diary

parent to parent

30TH REUNION In November 2013, Parent to Parent celebrated its 30th anniversary with a Reunion at the Waipuna Hotel and Conference Centre

The Reunion was a fantastic day where members and staff from then and now gathered to share their memories of our organisation. The event was opened with a performance by the Otahuhu College Kapa Haka group, and featured presentations from Hon. Chester Burrows MP, Cr. Sharon Stewart, and JB Munro (QSO).

Each of the Parent to Parent regional groups prepared displays of the history of their regions, and the Parent to Parent life members were presented with a gift.

A highlight of the day was the presentation of an appreciation award to JB Munro - in 1983 when JB was National Director of IHC, he provided Parent to Parent with its first grant of $5,000 to launch our service in regions outside of Auckland.

Without his belief in Parent to Parent, we would most certainly not be where we are today. JB also helped to cut the beautiful reunion cake that was donated by Auckland Cake Art. The day finished with an afternoon tea, next to the sparkling Panmure Basin with live music played on the hotel terrace.

Copies of the commemoration book are available online, or by contacting Parent to Parent New Zealand.

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(Left to right) Anne Wilkinson, Shirley Wass, Sally Duncan and Nick Wilkinson (MC) give a presentation on 30 years of Parent to Parent

JB Munro and Board Member Peter Campbell cut the beautiful cake that was donated by the Auckland Cake Art

JB Munro (QSO) gave a presentation from his perspective as the National Director of IHC in 1983 when Parent to Parent NZ was first formed.

JB provided Parent to Parent NZ with its first grant and was presented with an award acknowledging his support for the organisation.

The Otahuhu College Kapa Haka group performed some items, and provided a rousing start to the day.

After lunch, all the attendees congregated in front of the sparkling Panmure Basin for a photo

GLEN GOES FLATTING

how choices in community living funding is enabling independent living When Glen left home in 2013, it was both exciting and terrifying for me as a mother. Glen has been very fortunate that he has had positive experiences in schools he attended in Tokoroa and Hamilton, which gave him a smooth transition into adult life. Glen happily attends Transition to Employment at Community Living, and has a couple of volunteering jobs, which keeps him very busy; he is a people person and thrives on the company and says his aim is to help people.

Glen has a rich social and sporting life; he plays Football and Ten Pin with Special Olympics and Basketball during the winter, and is a Guitar player with Starjam. Glen loves movies, music and hanging out with his friends. Recently he has become an active member of People First, and is becoming a strong self-advocate who makes many of the major decisions in his life independently.

For a couple of years before Glen left home, he had been saying that he wanted to go flatting with his best friend Alex, and Alex’s family were getting the same message; we knew this would happen when the time was right. I heard about the Choice in Community Living funding stream which sounded like it was just what Glen needed-we arranged for an assessment through Disability Support Link who then allocated the funding.

Alex’s family and our family decided that we would look into fund managers, who take the funds and then manage the recruitment process and HR functions of Glen and Alex’s staff. We decided on Community Living (not to be confused

with the name of the fund) to be our provider, and this has been an excellent arrangement.

Glen and Alex wrote a job description with the support of our fund manager Alicia, and then interviewed the applicants. Two young women were selected, and they have been wonderful. Some of our funding was used to provide professional development for our staff, around developing an enabling, rather than disabling, relationship with the boys.

This has given the staff parameters to work within which encourages independence.

Both our family, and Alex’s family, wanted Glen and Alex’s flatting experience to be as close to regular flatting as possible; over time we have adjusted the times the staff need to be there and when they are not. We are currently trialling no staff in the mornings to get the boys up and out of the house in time for work. We are waiting to see how this goes.

We have never had staff staying overnight; someone comes in the afternoon to oversee the cooking of the evening meal, and to support Glen and Alex maintain their busy lives. Regular

“Flatting is awesome. I get to flat with my best mate, and we have family barbeques.

We have to do our own housework and washing too. We take turns at cooking, but we help each other out because we are mates”

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flat meetings with a staff member are held to sort out the cleaning rosters, grocery shop and budget; most of the time however, they are just on their own and getting on with it.

About the same time as hearing about Choices in Community Living, we heard of the Accessible Housing Trust who build community housing for people with disabilities. We were lucky that three new houses were due to be completed in Hamilton – we put the boys’ names down and they were selected to rent one of the three bedroom houses.

The house is new, insulated, beautifully decorated, and better than anything we could have found on the open market that was within the budget of the WINZ accommodation supplement. Accessible Housing has been wonderful to work with, and have been understanding and supportive of our situation.

Glen and Alex have a real home, with lovely furniture and everything they need coming from extended family and friends. Both the families have tried to step back and allow the boys to find their feet, and sort out any issues that arise themselves. The boys haven’t had anything major occur to date, but we are aware that one day something will come up, and they will be able to manage any issues independently.

The boys had a house warming afternoon, and lots of their friends and family came along and had a great time. The boys also host their families to barbeques – with us bringing most of the food. This process has been much the same for Glen’s older sister who has been in several flats, except Glen’s flat is tidier!

Choices in Community Living is a very flexible funding source which allows people to choose how they want to live their lives. Glen and Alex were both used to a lot of autonomy while living at home, and this is something that both families wanted the boys to have when they left home.

Glen says “Flatting is awesome. I get to flat with my best mate, and we have family barbeques. We have to do our own housework and washing too. We take turns at cooking, but we help each other out because we are mates”.

- Linda Terry Glen (left) and Alex love to host family barbeques at their new flat.

Choices in Community Living is an alternative to residential services that offers more choice and control over where people with disabilities live, who they live with, and how they are supported.

The scheme is currently available in Auckland and Waikato regions. Your local Needs Assessment Service Co-ordination (NASC) agencies have identified staff who can discuss the scheme and provide advice on what funding is available.

Visit www.health.govt.nz for contact information, or contact Parent to Parent.

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CHOICES IN COMMUNITY LIVING an alternative to residential services in the waikato & auckland regions The new model for supporting people with disabilities is currently being demonstrated in selected regions around New Zealand. This has come about after the social services select committee heard from disabled people, their families and whanau, and service providers that they were generally unhappy with how services were being delivered.

Government has consequently responded by demonstrating a new model for disability support. The new model is made up of three parts - one being Choice in Community Living, which is being trialled by up to 150 people in the Auckland and Waikato regions.

Choice in Community Living is an alternative to residential services, that offers people with disabilities more choice and control over where they live, who they live with, and how they are supported.

The scheme is for people who currently live in a residential service and want to move into a home they rent or own, or live in their parent’s home and have disability support needs similar to people who live in residential service.

People must be eligible for disability support services funded by the Ministry of Health before they can access Choice in Community Living.

How does it work?

People access Choice in Community Living through the Taikura Needs Assessment Service Co-ordination (NASC) agency based in Auckland, or the Disability Support Link NASC based in the Waikato. Once assessed as being eligible, people are provided with information on funding they can access from the Ministry of Health, and a list of support agencies to choose from in their area. Eight approved providers are available to support people as part of Choice in Community Living.

Their role is to assist the person with a disability, along with family, whanau and friends to develop a plan on how they can use their funding and support to move into independent living. Once the plan is completed, it is submitted to the NASC. The support agencies are: CCS Disability Action, Community Living Ltd, IDEA Services Ltd, Iris Ltd, Renaissance 2001 Ltd, Spectrum Care Trust and Te Roopu Taurima o Manukau Trust.

How is it going so far?

As at January 2014, 34 people have taken up Choices in Community Living, with 90 more in transition towards it.

Choice in Community Living is proving to be popular with younger people, with just under a third of all people taking it up aged between 16 and 25 years. About two thirds of people who have taken up Choice in Community Living were previously living with residential services, and the remainder were living in the community.

Where do I find out more?

If you would like to find out more about Choice in Community Living you can contact the people below, or visit www.health.govt.nz Auckland: Taikura NASC - Liz Tohu elizabeth.tohu@taikura.org.nz 027 588 3342

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Waikato: DSL NASC - Nellie Harris nellie.harris@waikatodhb.health.nz 07 839 1441

ENABLING GOOD LIVES the andrell family’s journey so far

Before we found out about Enabling Good Lives (EGL) my husband Kerry and I felt like we were getting nowhere. Two of our daughters Keriann and Shannen have very high needs. They’re 18 and 20 and will soon be leaving school. We were worried about what might be next because we felt that the options out there just weren’t right for our daughters.

Kerry and I went along to one of the first meetings for families about the EGL demonstration in Christchurch and we were excited about the chance to make the lives for our daughters that we have always dreamed of. EGL gives us more control over the future and we have a navigator, Hannah, who supports us in planning a good life for Keriann and Shannen.

Having a navigator helps you re-look at things and refocus.

It’s given us new energy and we’ve started to dream again.

We’re still in the early stages of planning for the future but we’re already trying out different ideas and making changes.

At the end of last year we tried out a different kind of respite for our daughters. Keriann and Shannen went to Hanmer and spent time with a friend and three paid carers, instead of going into centre-based respite care. They went to the hot pools, rode in a wagon behind Clydesdale horses and relaxed in the sun. Not only did this help Kerry and I to get a physical break but we got a mental break too because we knew who they were with and what they were doing. We got regular text updates and photos as well. They came back so happy.

We’re also looking at the possibility of Keriann and Shannen staying at home with carers for some respite while we head away for a break. They’ll be able to have their friends over and do things around Christchurch together .

touch with their community. They really enjoy making bathbombs in particular which would be great to sell at markets.

Together, we’ve started to plan for the long-term too. One of the other things our navigator is helping with is setting up a Circle of Support for Keriann and Shannen. We’re thinking about who will be there to make sure they’re having a good life when we are no longer around. Kerry and I want the peace of mind that when we go they are fully set up and can have a good lifestyle.

Another part of our long term planning is finding an accessible home where Keriann and Shannen can live independently with care and be able to invite their friends around. We want them to be able to have a home and live their day-to-day lives like every other Kiwi does.

We’ve still got a long way to go with our planning, but with EGL we feel the most supported that we ever have. We really feel like we can make the life for our daughters that we have always wanted them to have.

- Irene Andrell

We really want to tap into what’s available in the community around us and another plan we have for the future is to establish a microenterprise based on Keriann and Shannen’s interests in crafts and gardening. A business would provide Keriann and Shannen with some income and give them opportunities to keep in

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ENABLING GOOD LIVES an update on the christchurch demonstration

Enabling Good Lives (EGL) Christchurch has transitioned its first participants over to personal budgets that combine resources from the Ministries of Health, Social Development and Education which can be utilised much more flexibly within agreed guidelines.

It is just the beginning of a one person, one plan, one system approach initially for up to 50 school leavers/young adults with high and very high needs. Enabling Good Lives is underpinned by principles including self-determination, easy to use and mainstream first.

Disabled persons and families are represented in the governance of Enabling Good Lives and lead a local group which advises the Enabling Good Lives Team.

It is early days but participants are excited and energised by the opportunities that Enabling Good Lives offers with independent facilitation through skilled Enabling Good Lives navigators enabling them to dare to dream about different futures which are more in line with the rest of

society, (something to do, somewhere to live, someone to love).

Enabling Good Lives is also working closely with providers who can also be freed up to offer more flexible and personalised supports directly to individuals. This is the very start of the Enabling Good Lives journey which is seeking to demonstrate that this type of approach can lead to better outcomes with similar resources and is sustainable and scalable.

There are bureaucratic, cultural and system challenges to overcome, but Enabling Good Lives is underway.

- Gordon Boxall, Director Enabling Good Lives

A new way of funding disability support is being used for people taking part in the Christchurch Enabling Good Lives demonstration. This method of funding 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 choice over who supports them and when they receive support.

A full step-by-step guide to the Enabling Good Lives funding pathway is available in the February Enabling Good Lives Christchurch Newsletter on the Office for Disability Issues website under ‘Christchurch Demonstration’ at www.odi.govt.nz/eglives.

For more information regarding the funding pathway, contact Richard Buchanan, Manager of Provider Relationships and Personalised Funding. Email richard@eglives.co.nz

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BOCCIA

a strategic and exciting sport that is truly inclusive for all A cross between Lawn Bowls and Petanque, Boccia (pronounced Boch - ha) is a non-contact sport that is played on a smooth rectangular court and can be played as individuals, in pairs, or in teams of three.

Boccia can be played as a social sport or can be taken to the very highest level of achievement as an event at the Paralympic games.

Boccia is a truly inclusive sport for all. It is a very skillful, strategic and exciting sport in which men and women of all ages can compete and play together - with or without a disability. Although all people of all abilities can play, participants are required to be seated while competing.

For those who dream if reaching the pinnacle of the sport and who want to compete at the Paralympic Games, Boccia is a sport that requires a significant amount of skill and strategy.

The top athletes in the world work hard to perfect their game, and display a high degree of muscle control, accuracy, concentration, and tactical awareness.

Whether you participate for pure enjoyment, social interaction, the thrill of a challenge, or you have ambitions of becoming a Paralympic Games champion, Boccia may well be the sport for you.

Boccia NZ was set up in 1999 as is a registered charitable non-profit organisation.

Boccia NZ offers support to local clubs, community engagement, and athlete development and high performance.

For more information on Boccia visit the website or email boccia@boccia.org.nz

www.boccia.org.nz

Boccia can be played recreationally in someone’s garage, or competitively at the local hall or gymnasium - making it easy to get a local group started.

Different levels of events take place all year round to cater for the range of goals - whether you want to socialise with friends, develop new skills or compete to the highest level of competition.

At the social level, Boccia is a fantastic sporting opportunity that is suitable to people of any age, gender or ability.

However, to gain the benefits of competitive pathways available and compete at national or international levels, athletes must display movement difficulties in all four limbs - this may be a result of a number of conditions such as (but not limited to) cerebral palsy, acquired brain injury or stroke, spina bifida, muscular dystrophy, multiple sclerosis and motor neuron disease.

- Luke Morris, Director of Boccia

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FAMILY LEADERSHIP ALLIANCE parent to parent is working with other leaders in the sector to change attitudes

The Think Differently fund from Ministry of Social Development is a social change campaign to encourage and support a shift in attitude toward people with disabilities.

Parent to Parent is working with Imagine Better and Standards and Monitoring Service (SAMS) - the ‘Family Leadership Alliance’ on a major project in 2014 from the Cape to Bluff.

As independent organisations, Parent to Parent, Imagine Better and SAMS decided to focus on a collaborative initiative under the banner of the Family Leadership Alliance and applied to the Think Differently fund in 2013. Funding was approved, and the Alliance is now in the process of working together to roll out a nationwide programme.

The objective of the programme is to provide people with disabilities, their families and communities with informed, forward thinking, pro-active and practical suggestions about how they and their whanau may be contributing citizens within inclusive communities.

The Alliance seeks to ensure that people with disabilities and their families have access to information, concepts, models, networks and resources that ensure they are well positioned to live the life they choose.

The project is a tiered approach to create a fundamental social change. It aims to create opportunities for people and families in civic and leadership roles and enable participation in community life.

We aim to support social inclusion and active citizenship via a ‘kitchen table’ strategy. This strategy aims to build a highly influential, efficient, skilled and informed network of family leaders throughout New Zealand through community conversations.

Parent to Parent has taken the lead role in two aspects of the project; Cultivating optimistic expectations: This aspect of the project is about creating a positive experience for families early in their journey into the world of disability, so that they may build their skills, contacts, resources and vision required for families and whanau of disabled people to live a life of choice and aspiration.

To enable this to happen, Parent to Parent are hosting a series of workshops around New Zealand; the first being a series of nine Personal Support courses. This course is designed especially for families who are at the beginning of their journey, and explores stress management, building support networks, increasing family resilience and grief. Families leave this course with hope for the future, and with new contacts in their community.

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Another workshop we are offering is the Second Generation workshop, which is designed for adult siblings of disabled people and their parents. Second Generation aims to empower adult siblings of disabled people (and their families) to deal with the complex welfare, legal and financial issues they will face if they choose to take a more significant role in their in their brother or sister’s life.

The workshop explores the key components of a good life - how are their siblings going to live, what contribution can they make to the community, and what relationships are they going to have. The workshop also facilitates intergenerational conversations between parents and siblings to plan for the sibling’s good life.

Second Generation is being held in Nelson from 14 - 16 March 2014, and Invercargill from 18 - 20 September 2014.

The next aspect of the project that Parent to Parent is taking the lead role in, involves the sharing of resources, messages and promotion.

In this part of the project, Parent to Parent, SAMS and Imagine Better will be developing a series of web-based tools and mobile technologies that will give families access to ideas, messages and practical tools they can use in the every day lives of their families. The web tools are being developed and will be available for families later in the year.

These two aspects that Parent to Parent are leading are just two of a number of exciting ventures that are being undertaken by the alliance, that will hopefully make a huge difference in the lives of people with disabilities, their families and whanau, and their community.

For information about whats happening in your part of the country visit

www.parent2parent.org.nz www.sams.org.nz www.imaginebetter.co.nz www.thinkdifferently.org.nz

A YOUNG ADULTS GUIDE TO FLATTING a new publication by the paradigm initiative that will enable families to imagine better for their family member The Paradigm Initiative with support from Parent to Parent New Zealand has developed a resource that follows four accounts of young people that have diverse needs, who are living great but ordinary lives in their community.

Young Adult’s Guide to Flatting is a publication that aims to create opportunities for families to imagine better for their family member with a disability’s future. The book is resource which shows the potential of the Ministry of Health funded Disability Support Services ‘New Model’ and individualised funding.

Lorna Sullivan says in the forward of the book “...for if we can imagine better, we can become better and seek out those who will walk with us toward what we know is possible, and away from what the doubters and naysayers whose own fears and apprehensions would stand in the way of what is both possible and achievable in the lives of others”.

The book tells the four personal accounts of courageous young people, who all have diverse needs and are living great but ordinary lives in the community. Their families have also shown great courage in following through with a clear plan

based around a long held vision of a fully inclusive life for their son or daughter. Crafting a good and ordinary lift takes a lot of thinking, talking, visioning, planning and acting.

Along with these personal accounts, the book also provides practical advice on planning, circles of support, individualised funding, budgeting, and learnings and suggestions for parents.

Copies of ‘A Young Adults Guide to Flatting’ is available from Parent to Parent at no cost.

For more information on the Paradigm Initiative visit www.paradigminitiative.co.nz To obtain a copy of the book contact Parent to Parent on 0508 236 236 or email national@parent2parent.org.nz

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SIBSUPPORT NZ

parent to parent’s sibsupport programme is now in its 19th year of operation The First SibSupport programme was held in the Waikato in 1995, and has grown into a national programme with over 400 children attending programmes last year. The first programme for 2014 was the Waikato SibCamp held at Narrows Park in February.

The SibSupport programme is especially for siblings who have a brother or sister with a disability, but do not have a disability themselves. The programmes are delivered in a weekend camp or in a one day workshop.

Children that grow up in a family with a brother or sister that has a disability, can often be unintentionally pushed to the side when their sibling requires a lot of attention and care. The SibSupport programme is designed as something special, just for them, where they aren’t sharing the attention with their sibling.

The programmes are an opportunity for the children to build their own support networks. This is achieved by making friends with other children who have a mutual understanding of what growing up in a family with a brother or sister that has a disability is like.

The weekend camps are a mix of workshop sessions where the children can talk openly about any frustrations or challenges they are having with their sibling, and outdoor adventure activities. The workshop sessions are facilitated by specially trained staff who also have a sibling with a disability.

Here is what some of the parents said after the Waikato SibCamp:

I think this is a valuable experience as our children without disabilities have very few resources available to them. These camps acknowledge their challenges and feelings.

What a positive experience to validate them!

Thank you for having this option open to these children. It does make a difference to have something that is completely hers and that she doesn’t have to share with her brother. She had a great time.

The one day workshops have a balance of games and activities, and time for sharing and discussion.

The Waikato region had their SibCamp over the weekend of 14 - 16 February at the Narrows Park Christian Camp.

30 children from all over the Waikato came together and participated in water slides, paint ball, downhill trolleys and burma trail and lots of time swimming in the pool - perfect for a hot Waikato summer.

The children were split into three groups based on their age, and each group had a sibling leader assigned to them. Our sibling leaders have all attended camps and leaders training they are the ‘big brother’ or ‘big sister’ figures at the camps.

The kids at the Waikato camp had a fantastic time, made lots of new friends, and are looking forward to the next SibCamp.

If you have a child aged 8 - 18 that has a brother or sister with a disability or health impairment and would like them to attend a SibSupport programme, contact Parent to Parent.

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Parent to Parent has two more camps planned in early 2014 • wellington 28 feb - 2 mar • Auckland 28 - 30 mar There will be more camps and workshops later in the year in other parts of the country.

SibCamp Waikato is made possible thanks to funding from Life Unlimited www.life.nzl.org

Highlights from the February Waikato SibCamp

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SECOND GENERATION

a workshop for adult siblings of disabled people and their parents or whanau The sibling relationship is likely to be the longest and most stable in a disabled person’s life. The Second Generation workshop aims to support this relationship. It empowers adult siblings of disabled people and their parents to deal with the complex welfare, legal and financial issues they will face if they choose to take a more significant role in their brother or sister’s life.

The workshop brings together adult siblings and their parents to work together to build a vision for the future good life of their disabled family member. It is about planning a good life for that person and what is going to happen once the parents are unable to support them anymore.

Key components of a good life are explored - what contribution can they make to the community and what relationships they are going to have.

Parents of disabled people often don’t want to burden their siblings, and can often delay the sharing of the responsibility.

As families get older and siblings are not a part of the disabled person’s life, the support networks for the person narrow, and can cause them to become isolated.

More often than not, siblings really want to take an active part in the their brother or sister’s life and don’t feel burdened at all. This workshop acts as a catalyst for constructive discourse between sibling and parent, and initiates an all-inclusive family plan for the disabled person’s good life.

Brothers Tim (left) and Alex Sneddon will be speaking at the Nelson workshop in March. Tim and Alex will share the inspiring story of how their family has supported Alex to live in his own home, and hold down numerous part time jobs.

This workshop helps to focus on the person, who they are, and what they can do - not just the disability. Realising the gifts and strengths of the person, helps families to assist their family member create and achieve their goals, and widen their network of supporters.

Participants of the Second Generation workshop go away with the hope that there are possibilities for their sibling’s future and facilitates support networks and sharing of creative solutions between the generations.

Workshops are being held in 2014:

Nelson 14-16 March Invercargill 14-14 September The workshop, meals and accommodation are provided. Register online today at www.parent2parent.org.nz or phone 0508 236 236 option 2 16

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Gray Ruffell is an accomplished educator, public speaker and independent marriage celebrant. Gray presents his ‘Community Investigation’ workshops all over New Zealand. Gray will be speaking at the Nelson workshop about community inclusion and his own experiences that lead him to the success he enjoys today.

trainers & facilitators wanted

leisure participation study

Parent to Parent New Zealand’s family education programmes are delivered right across the country through a network of skilled trainers.

The primary goal of this PhD research is to identify the participation levels, activity patterns and barriers to participation of children with movement difficulties in leisure activities in New Zealand.

We are looking for experienced facilitators who would like to join our existing team of trainers and deliver Parent to Parent’s education programmes.

Trainers are contracted on a one-off basis as and when programmes are planned.

Full training in Parent to Parent’s material will be provided.

If you are interested you can apply online at

www.parent2parent.org.nz Alternatively, send your CV and cover letter to: Parent to Parent NZ PO Box 234 Waikato Mail Centre Hamilton 3240 matthewp@parent2parent.org.nz

recruitment closes 5pm 11 April 2014

Leisure activities include out of school activities such as sports, hobbies, play, recreation, social activities and other cultural activities.

We wish to recruit children of age 6-12 years who have movement difficulties (problems with mobility, dexterity or agility) and who are able to understand simple questions. survey questionnaires will be mailed to your address. Children will be required to complete 2 questionnaires (parents can assist) which will take 1 hour, and parents/guardians will be required to complete 2 questionnaires which may take 30 minutes.

Contact Parimala kanpa507@student.otago.ac.nz p 03 479 5422 m 0210 241 6166 school of psychology 325 great king street Dunedin recruitment closes 31 May 2014 this project has been reviewed and approved by the University

Training in Parent to Parent’s education materials is being held in Wellington on 10 - 11 May 2014.

of Otago Human Ethics Committee. Ref:12/314 children with non-verbal communication are also invited to participate.

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BOOK REVIEW

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.

Take the time: Mindfulness for Kids Maud Roegiers & Julia Frank-McNeil “Take the Time encourages children and parents to find space in their lives to slow down and become deliberate with their day-to-day actions and thought. Both parent and child can learn to “experience the experience” rather than rushing from one thing to another. This pensive and peaceful little book touches the meaning of mindfulness: to savour life through full awareness of oneself and one’s surroundings by taking the time to do so.” - Book Jacket.

Translation of: Prendre ke temps.

Mindfulness is a wonderful way to slow down and focus on the present, especially when the busyness and fast pace of life is getting a bit much. This applies to children as much as it does adults.

This is a lovely little book to help young children untangle their thoughts and take time to enjoy being in the moment as well as learning to do things that calm and soothe them. With few words and gentle pictures in soft colours this book helps the child focus on just one sensation or type of activity at a time.

This is a great introduction to the practice of mindfulness for children and adults, a good book for parents and children to use together.

ID 30444 New Free Book 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.

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.”

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.

The IHC library is accessible in person on level 14, Willibank House, 57 Willis Street, Wellington.

By email librarian@ihc.org.nz or free phone 0800 442 442.

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.

To search the entire online catalogue of the IHC Library, visit

www.IHC.org.nz 18

PARENT TO PARENT SUMMER 2014

EVENTS DIARY

Parent to Parent events in your region March

May

Fri 14 - Sun 16 Second Generation Workshop - Nelson

Sat 3 - Sun 4 Support Parent Training Course - Christchurch

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.

Are you are the parent/carer of a child that has a disability or health impairment and would like to support other parents through the Parent to Parent network? This two day course covers active listening, navigating health, disability and education services among other topics.

Fri 28 - Sun 30 SibCamp Auckland - Waiwera Lodge A camp for siblings who have a brother or sister with a disability aged 8 - 18. A mix of workshop sessions and adventure activities.

April Sat 5 Personal Support Course - Christchurch A course designed for families that looks at stress management, grief, family resilience and growing your support networks. Lunch is provided.

Sat 12 Personal Support Course - Auckland A course designed for families that looks at stress management, grief, family resilience and growing your support networks. Lunch is provided.

Sat 12 - Sun 13 Support Parent Training Course - Palmerston Nth Are you are the parent/carer of a child that has a disability or health impairment and would like to support other parents through the Parent to Parent network? This two day course covers active listening, navigating health, disability and education services among other topics.

May Sat 3 - Sun 4 Support Parent Training Course - Christchurch Are you are the parent/carer of a child that has a disability or health impairment and would like to support other parents through the Parent to Parent network? This two day course covers active listening, navigating health, disability and education services among other topics.

Sat 17 Personal Support Course - Nelson A course designed for families that looks at stress management, grief, family resilience and growing your support networks. Lunch is provided.

June Sat 14 Personal Support Course - New Plymouth A course designed for families that looks at stress management, grief, family resilience and growing your support networks. Lunch is provided.

September Fri 12 - Sun 14 Second Generation Workshop - 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.

Parent to Parent hosts events in most regions of New Zealand throughout the year. Visit the events calendar on our website to keep up with events in your region.

You can register your interest online for any Parent to Parent’s event.

www.parent2parent.org.nz

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visual communication tools break everyday tasks into easy to follow steps.

get toothpaste

shave neck

turn kettle on

put seat down

flush toilet

wash hands

visual communication tools focus the attention on the tool, taking pressure off the person. the tools are moisture proof and can be placed where used

to purchase visual communication tools or to view the range visit parent2parent.org.nz