Talking Sense - Summer 2015

Celebrating Sense’s 60th birthday

the magazine about deafblindness

Young campaigners have their say

talking

Breaking down barriers for football fans

sense Summer 2015

Welcome

Previous Talking Sense articles are available on Sense’s website www.sense.org.uk

So much has changed – and remains the same

The views expressed in Talking Sense are not necessarily those of Sense.

Talking Sense is happy to consider articles for publication but reserves the right to edit material where necessary.

Editorial team: Colin Anderson and Stephen Hunt Front cover: Ian Huggett at the 60th birthday party at Manor House Design: www.martinlore.co.uk Volume 60, No 2 Summer 2015 ISSN 1367 4604 Registered charity no. 289868

Please let us have your news and views for the next Talking Sense by October 2015.

Tel: 0845 127 0060 Fax: 0845 127 0061 Text: 0845 127 0062 colin.anderson@sense.org.uk

Sixty years is a long time. When Sense started in 1955 Winston Churchill was still the prime minister, the average house cost just over £2,000 and fish fingers were introduced to Britain for the first time!

The world has changed enormously since then, and so has Sense.

The original family members of the Rubella Group met around Peggy Freeman’s kitchen table, had assets equivalent to £48 and shared much-needed information about their children through a hand printed newsletter – the predecessor of Talking Sense. Today Sense offers a wide range of services in England, Scotland, Northern Ireland and Wales – and supports the development of services for deafblind people in some of the poorest parts of the world.

These 60 years have seen dramatic changes to our world – the closure of the long-stay hospitals, the growing numbers of children surviving difficult births and the lightning spread of technology and the internet, to name a few.

Some things haven’t really changed though. At the kernel of Sense’s work, our mission and values live on as strongly as they ever did. Parents still fight a passionate battle to give their child the best chance possible; adults still want opportunities to play a full part in the world and older people still have a right to companionship and support.

As Gill Morbey writes on page seven, Sense is fighting as strongly as ever for these values – and there is little doubt that they will underpin our collective endeavour for the next 60 years.

Colin Anderson Editor of Talking Sense * If you would like Talking Sense emailed to you as a PDF file (which saves Sense money) please email: libby.hawkins@sense.org.uk

1955

Two young mums – Peggy Freeman and Margaret Brock – catch rubella while pregnant and their children are born deafblind. Desperate for support and information they contact ten other families with rubella children and The Rubella Group is born.

Contents

Summer 2015

In this issue

Our 60th Birthday

24 A choir of many voices: There

have been so many individuals and voices in the Sense story – children who have grown up, families who have come through, staff who have given their all and volunteers and supporters who have played their part. Each has a voice and a story to tell …

News

Briefings

4 News Sense responds to government action; Gill Morbey wins Anne Sullivan Macey Award; when childcare fails; hospital care under scrutiny; new sensory backpack; Usher mentor update.

16 Campaigns The 60:60 vision campaign; new right to accessible health information; play report; Young Campaigners’ weekend.

7 Gill Morbey CEO

20 Technology Where have we come from, where are we going?

8 Out and about How people celebrated Sense’s 60th birthday across the nation.

Features

10 Finding Grace A conversation with parent Rebecca Murunga and deafblind activist Emma Wambui.

24 60 Voices What does Sense mean to you and how has it helped?

13 Fundraising The Sense International Ball; the Community Fundraising Team; balloon faces; challenges.

22 Sense in context

34 Arts and wellbeing Walking group; poems of the river; PhotoVoice project.

36 Football focus Lord Faulkner’s campaign to make football stadiums accessible to all; life as a visually impaired Celtic supporter.

40 Membership Matters Holiday Plus; mySense announcement; National Branches Meeting; Acquired Deafblind Network conference; how does Continuing Healthcare work?; Lando’s world; Sense Awards.

30 Sense Trading From a sale to a Sense service.

32 Bethany’s progress How a nervous young woman has really grown in confidence.

In Montgomery, Alabama, Rosa Parks refuses to give up her seat to make room for a white passenger and is arrested – leading to the Montgomery Bus Boycott, an important milestone in the Civil Rights Movement.

1955

Summer2015 Talking Sense 3

News

Sense scrutinises new government agenda

W

ith three months since the election, the formation of the new government and its first budget, Sense has been watching closely to see how the changing political landscape will affect deafblind people.

“We have a government which believes in reducing the role of the state and in families supporting themselves,” said Sue Brown, Head of Public Policy. “There are opportunities as well as threats in this agenda and now is a good time for deafblind people and families to make sure their MP knows what they want from them.”

The government’s aim to reduce unemployment among disabled people also gives Sense the opportunity to talk about what is needed to achieve that goal – and how we can make sure that people with sensory impairments are included. On the other hand, the recent budget included a cut in Employment Support Allowance for some people, and Sense will be working with other disability charities to oppose this cut.

Sense is also concerned that social care was not mentioned in George Osborne’s budget. “Cuts in local authorities over the last five years have put the social care system in crisis,” said Sue Brown, “with many people not getting even the basics they need.”

Sense is aware that many MPs are worried about local services, and the government is beginning to recognise that the current funding is unsustainable. Many have argued that now is not the time to introduce a new capped model of social care – the priority has to be plugging the gap in the current system.

The Comprehensive Spending Review in November will be the next opportunity for government to act on funding. Sense will be looking to the government to show leadership, hold off cutting local government spending, and put significant funding into social care.

“It’s not all about money,” said Sue Brown, “and Sense will continue to work on both practice and funding issues.

But underfunding is a significant issue and it is hard for local authorities to deliver good practice when they are struggling to balance the books. We must hope that November sees some investment in the vital services deafblind children and adults need to lead a good life.”

Well done Gill!

Gillian Morbey, Sense’s Chief Executive has been awarded the prestigious Perkins International Anne Sullivan Macey Award.

President and CEO at Perkins, Dave Power said: “Colleagues know Gillian for her authenticity, her natural rapport with deafblind people and her apparently instinctive ability

1959

to see into the heart of people and situations.”

Gill is also Chief Executive of Sense International and President of Deafblind International, and received the award at the 16th World Conference of Deafblind International (DbI) in Bucharest.

The Rubella Group starts to campaign for help, and health visitors and welfare clinics start to receive training in the needs of deafblind children.

4 Talking Sense Summer 2015

News

Help when childcare fails parents

A

new guide by legal experts Irwin Mitchell and charities Contact a Family, Every Disabled Child Matters and the Family and Childcare Trust will aim to help parents with disabled children seek redress if the childcare system fails them.

The guide, Helping you access free childcare for your 2, 3 and 4 year old, will make it easier for parents with disabled children to understand their rights around the government’s free early education offer – and help them challenge decisions made by local authorities and childcare providers that result in their child being denied access to free childcare.

You can find the guide at: www.cafamily. org.uk/news-and-media/legal-resourcewill-prevent-families-missing-out-on-earlyyears-education A coalition of charities, including Sense, is also appealing to families with disabled children under five years old to take part in a short survey about their access to the free early education offer. The findings will be used to build up a national picture of the barriers faced by these families and can be found at: www.surveymonkey.com/r/ EarlyEducationChildcare

Individual children’s needs missed by NHS A new survey by The Care Quality Commission has revealed that less than half of parents and carers of children with a physical or learning disability, or a mental health issue, felt that staff knew how to care for their child’s individual needs.

The Commission surveyed almost 19,000 children and young people who stayed in hospital overnight, or were seen as a day patients, in 137 NHS Trusts. While most children and young people said they were happy with the care received, children with special needs reported poorer experiences of care.

“A hospital experience is traumatic for any child but it is even more so for those with special needs,” said Jolanta Lasota, CEO at Ambitious about Autism. “Parents and carers know their child better than anyone else so it is disappointing to see they don’t feel the understanding is there from those who look after their children.”

To read the full report visit: www.cqc.org.uk/content/childrens-survey-findsgood-care-highlights-inequalities

Super new sensory backpack A new sensory backpack for children with visual impairments was launched in August by the V&A Museum in partnership with Sense.

The ‘Curious Ceramics’ backpack has been designed by multi-sensory artist Abigail Hirsch and is full of sensory activities that can be enjoyed by all families. These include a musical rain stick, a magnetic drawing board and ceramic touch objects from China to the Netherlands.

At the launch, children and families were able to explore the pack’s contents in the Ceramics galleries with V&A staff, before watching a new pop-up performance from No Nonsense Theatre with British Sign Language interpretation.

British Minister of Transport, Ernest Marples, opens the first section of the M1 Motorway between Watford and Crick.

1959

Summer2015 Talking Sense 5

News

Need someone to talk to?

Get in touch with Sense’s Usher Peer Mentor Scheme!

A little personal support can make a huge difference.

“Mentors are many things – a positive role model, an adviser, an experienced friend. Somebody from outside a person’s immediate circle, taking a special interest can make an enormous difference.”

‘Excellence in schools’ 1997.

Living with Usher can be challenging. It takes most people a while to adjust as sight and hearing continue to change over time. Many people say that they go through times when they feel lonely, down and lacking in confidence. When that happens, a little personal support can make a huge difference. It can help to know that the person they are talking to really understands what it is like to live with Usher.

The Sense Usher Peer Mentor Scheme was launched in November 2013. Uniquely, it is run by people with Usher

Worcester welcomes new Sense shop Sense opened a new shop in Worcester in June, which will be selling clothes, accessories, brica-brac, books, music and DVDs. “The opening was a huge success and the local community has been very welcoming,” said Emily Scott, manager of the shop.

1965

for people with Usher. We aim to provide one-to-one support to people over 18 years old with Usher Syndrome, or family members, in England, Wales and Northern Ireland.

As someone who has taken part in the scheme said: “It’s the shared experience that is really important. It gives you an immediate understanding of what someone is going through.”

The scheme is managed by a committee of eight people who either have Usher or who are family members of someone with Usher. A volunteer co-ordinator who administers the scheme on a day-to-day basis also has Usher.

In some cases it is not possible to match up mentors and mentees who live in the same geographical area.

In these cases, people will need to be flexible about the communication methods they use – for example, by communicating by phone or email.

Mentors are volunteers who either have Usher themselves, or are a family member of someone with Usher. All mentors take part in a one day training course organised by Sense. We currently have a pool of 12 mentors, ready and willing to provide support where it is needed.

If you would like support from a mentor, or are interested in becoming a mentor please contact Ann Copson, the Scheme Co-ordinator on ann.copson@ sense.org.uk or by text on 07437 017069.

Darryl Neville, Head of Retail, Emily Scott, Ellie Kistruck, Assistant Shop Manager, Simon Bailey, Area Manager and Adrian Darkin, Director of Trading, at the opening.

A pre-school group for deafblind children is launched in Birmingham by Jessica Hills – who goes on to become an inspirational Chair of Sense for many years.

6 Talking Sense Summer 2015

Chief Executive

Young fun in Warwickshire A new ‘Get Out There’ (GOT) group for youngsters with sensory impairments and additional disabilities has opened in Warwickshire. The group offers opportunities for young people aged 6–25 to get out and about, try something new and have fun – everything from kayaking to visiting farms and baking.

If you would like to join the Warwickshire group, or volunteer, please contact Lucy Howard on 07825 380931 or email lucy.howard@sense.org.uk

It’s wonderful to be celebrating 60 years of Sense!

Celebrating our history – and looking to the future

I

t’s wonderful to be celebrating 60 years of Sense. There is a continuity to Sense that you would be hard pressed to find elsewhere. Some of the current Sense staff knew the ‘founding mums’. I am proud to say I knew Peggy Freeman, Margaret Brock, Jessica Hills (founding Chair) and many others. Indeed, Sense still provides support for Peggy’s daughter. This history ensures our ‘corporate knowledge’ and values stay alive and help us to hold on to those original dreams.

Many families, friends and a small but growing team of staff supported those early days. These hugely committed pioneers were courageous; they didn’t follow change, they led it. They challenged policy and questioned statutory services. It’s wonderful to hear some of those pioneers in the 60 Voices campaign.

Those early days were unbelievably challenging and I had always thought life would get easier. Sadly, as I write today, I think we have just as many difficulties. Life is always changing and we expect challenges along the way. However, with care funding continuing to reduce, and the cuts in welfare spending, some of our beneficiaries are facing really critical life situations. It’s important that we protect our current services but we must also respond to these challenges by doing things differently.

If we look ahead I think the role of local authorities in social care will be profoundly different. Charities have a history of being creative (just consider our beginnings) but we will need to be even more innovative.

Technology is discussed in this edition and undoubtedly it’s going to play an increasingly important part in our future.

One thing is for sure: no matter how proud we are of our past, and how creatively we are planning our future, at the end of the day it’s down to remarkable people continuing to do amazing things.

Gill Morbey, CEO

Thunderbirds, the classic family puppet sci-fi show debuts on ITV.

1965

Summer2015 Talking Sense 7

Deafblind Awareness Week

Icing on the cake!

The garden was looking lovely. The flowers, shrubs and plants were blooming and among them nestled colourful tactile sculptures and mosaics. Large paper flowers and decorations featuring Sense’s ‘I’ statements had also been placed imaginatively in the fauna.

The tombola and craft stalls were gaily festooned with flags and the stall holders excitedly awaited their first customers. Meanwhile in the marquee, trestle of tables heaved under a wonderful display of cakes, sandwiches and drinks. Even the sun had decided to shine!

The first guests soon started to arrive for this special celebration garden party – deafblind people, friends, staff and volunteers from the Market Deeping area and beyond.

In fact there were two things to celebrate: the opening of the new performance and arts space at Manor House, Market Deeping and Sense’s 60th anniversary.

As people arrived many tried their luck at the tombola before heading for the tea tent and then joining their friends at one of the tables dotted around the garden. There was music, some dancing, a lot of chatting and signing, a percussive music session and much more.

Then, special guest Ian Huggett, Deafblind Person of the Year, officially opened the performance and arts space in the garden.

With a flourish he cut the ribbon, everyone applauded and cheered and the celebrations continued!

1970

A walk on the quay side Roger Mulholland led from the front in this year’s Deafblind Awareness Week by organising a sensory walk along the river and quay in Exeter on 23 June.

His goal was to raise awareness of what it is like to live with sight and hearing impairments and help spread the word about Sense.

He was joined by deafblind people and local Sense staff, and other walkers were given the chance to wear a blindfold and ear defenders to explore the challenges faced by people with sensory impairments every day. Councillor Olwen Margaret Foggin, the Mayor of Exeter, also joined the walkers to lend her support.

Artwork from local deafblind makers was also displayed at the Transit Shed on the quay, with volunteers on hand to provide information about local services for people with sensory impairments.

The Education Act paves the way for special units for deafblind children to be set up, mainly in residential schools.

8 Talking Sense Summer 2015

Deafblind Awareness Week

Sun sizzles on summer fete Over 100 people attended the TouchBase South East summer fete on Friday 26 June as part of a double celebration to mark Sense’s 60th anniversary and Deafblind Awareness Week.

With both the sun and BBQ sizzling, deafblind people, families and staff enjoyed a range of stalls, fun games and competitions – there was even an opportunity to ‘splat the rat’! Kevin (pictured left) drove a hard bargain on the white elephant stall, making sure that every item raised as much money as possible.

Everyone who came along also had the opportunity to look round the PhotoVoice exhibition, which showcased some of the amazing pictures taken by people who use the centre (you can find out more about the PhotoVoice project on page 35).

The day ended with a raffle, with one lucky winner scooping four of the prizes!

Tactile art builds bridges In June, the Sense Supported Living house at Tullibardine Road, Sheffield was a hive of activity getting ready for Deafblind Awareness Week.

Our goal is to constantly find new ways to raise awareness and understanding of deafblindness in the local community.

This year we forged new links with Sheffield Norton Brownies and Guides by organising a tactile arts competition for children and adults. The artwork was later judged by the individuals we support, Chris, Will, Steven and Annie.

The whole team of staff and individuals took part in asking local businesses and shops to donate prizes for the competition – which in turn raised awareness

of deafblindness and Sense in the community. The response was fantastic – resulting in ten prizes and enough for everyone involved to receive a little gift.

Thanks to everyone for their commitment and dedication to making the competition a successful event.

Katarzyna Szurko (Deputy Manager at Tullibardine Road)

Annie Blanchard was one of the judges

One of the winners

The United Kingdom switches to decimal currency from the old pounds, shillings and pence.

1970

Summer 2015 Talking Sense 9

Sense International

Two voices, one dream Emma Wambui and Rebecca Murunga have personal experience of the challenges faced by people with disabilities in Kenya. In their role as Sense International Ambassadors, they are using their knowledge and passion to increase support for deafblind people and their families – and create change across the country.

1974

The first Sense holiday takes place, led by the Brown family – parents of a deafblind young man.

10 Talking Sense Summer 2015

Sense International APPEAL Fundraising news

Emma lives in Nakuru County, around three hours north-west of the Kenyan capital, Nairobi. She lost her sight and hearing in 2008 – and it changed her world completely.

“What does it feel like to be a deafblind person in Kenya? It’s crazy. I immediately lost my two senses; they almost went away at the same time. My parents were totally confused; totally, totally confused.

My friends could not understand me anymore and I had to look for new friends and explain to them how to treat me.”

The challenges Emma faces – those of isolation, loneliness and communicating with family and friends – are similar all over the world.

But life in Kenya can pose other, terrifying risks.

“There is a big issue of rape cases in Kenya. And the people who are being targeted are persons with disabilities – especially the deafblind and people with mental health problems. It almost happened to me one day but I thank God because I was rescued by a good Samaritan. It’s so risky in Kenya.”

It is estimated that 17,000 people who are deafblind live in Kenya.

Families of deafblind children face specific practical and emotional problems – and disability is still stigmatised.

Rebecca’s daughter Abigail is 19 and is deafblind. “Whenever I move around with my daughter, everything

Life in Kenya can pose terrifying risks.

stops; everyone is staring at her,” she says. “Of course, there is sympathy but you don’t really want it. I want to take Abigail with me wherever I go but it is a challenge.”

One of the biggest issues that Rebecca faces is identifying and getting the support Abigail needs.

This was particularly the case when Abigail was younger.

“There are times when I don’t really understand what Abigail wants because her communication hasn’t developed – because we had no support when she was little. Although she is 19, she struggles with simple daily activities; at home, Abigail spends a lot of time lying in bed, covering herself up.”

Sense International – a turning point “Sense International understood Abigail, they knew how to reach out to her, and they had programmes that could help her,” says Rebecca, who is now coordinator of the Parents of Deafblind Organisation in Burgomo County. “They embraced our parents’ organisation and brought us together, which has helped us to deal with the challenges we are facing and learn from each other. At times you realise that your situation is probably better than you feel. And because of that you gather the courage to continue.”

Emma first got involved with Sense International through the Nairobi Support For Women programme. “If I didn’t meet Sense International, I don’t even want to imagine where I’d be…” she says. “Life felt hopeless but

when I came into contact with them, that’s when I decided no, I have to live a positive life.”

This support gave Emma the confidence to forge a career in community development.

“The platform I was given, the support, talking to my parents, talking to the people around me – it was life-changing. Meeting the team and other deafblind people in Nairobi gave me that courage.”

Campaigning for change

Rebecca and Emma are heavily involved in advocacy and raising awareness of disability – and both are passionate about improving life for deafblind people in their country.

“We’ve trained in advocacy and the rights of deafblind people,” says Rebecca. “We’ve then been able to meet different government organisations and explain how they can help the lives of deafblind people to be better and a little easier.”

Abba wins the Eurovision Song Contest with ‘Waterloo’.

1974

Summer 2015 Talking Sense 11

Sense International “Currently, we have a bill going through the County Assembly: the Nakuru County Persons with a Disability Bill,” says Emma. “It is a huge document that covers many important issues; health, for example, because there is a lack of trained doctors and nurses who know how to treat and communicate with deafblind people. The Bill also includes education, accessibility, access to information and employment. I hope it will be made law this year.”

For Rebecca, education is an issue close to her heart. “Education and schooling is very, very important. We worked with the Kenya Institute of Curriculum Development to develop a new curriculum programme that is now being used across Kenya.

Teachers have been trained to

support children who are deafblind, and there is now an outline that all teachers use. Abigail is following this new curriculum and she is enjoying it very well!”

Emma and Rebecca are positive about the future, but acknowledge that there is still much that needs to change. “I know there are so many other deafblind people out there.

People who are hoping and praying and crying for someone to come and give them hope and a reason to live, a reason to smile,” says Emma. “This is why Sense International’s work is so important; it gives people in Kenya hope.”

To find out more about Sense International’s work in Kenya visit www.senseinternational.org.uk/ our-work/kenya

Add your support!

Between 10 June and 10 September the UK government will double every pound that you donate to our Finding Grace appeal. This means that if you help us to raise our target of £330,000 they will give us another £330,000 – making £660,000 in total.

To support the vital appeal and to make early screening for deafblindness a reality in East Africa you can donate online at www.senseinternational. org.uk/donate-finding-graceappeal – or text FIND to 70007 to donate £3.

Early intervention is vital

Sense International’s Finding Grace campaign aims to screen 300,000 infants in Kenya and Uganda to ensure that deafblind children are identified and receive the support they need in the crucial early years of development. Rebecca explains the difference

1980

early support will make: “Early intervention is so important. When Abigail was young I didn’t know about what help could be given to her. If I did, Abigail would be doing so much more than she’s able to do now.

“The Finding Grace appeal will go a long way in helping deafblind children to be more independent, understand how to live with deafblindness and be part of the community. Because once a child gets that early intervention, they will be able to go to school, they will be able to graduate on to vocational school, they’ll be able to acquire a skill.

“I really long that other families are able to get services early enough so that they don’t have to go through what we have gone through. Once there is an early intervention programme, then it won’t be as bad as it is right now in Kenya.”

Thanks to the Magpie Appeal on ITV, Sense is able to open Manor House near Peterborough – the first UK centre of its kind for young adults, providing housing, training and education.

12 Talking Sense Summer 2015

Fundraising news Sense International ambassadors address the audience

Guests get in touch with their childhood

The Sense International Chair, Sunil Sheth, and Her Royal Highness The Princess Royal Guests enjoying pre-drinks at the Ball

Sense International turns 21 with the Coming of Age Ball S

ense International hosted a Coming of Age Ball to celebrate its 21st birthday on 24 June 2015.

The event, which was attended by our Patron Her Royal Highness The Princess Royal, was a celebration of Sense International’s work and the vast difference it has made to the lives of thousands of deafblind children and adults across four continents.

In keeping with the ‘Coming of Age’ theme, the Ball recreated a number of childhood memories, including pick ‘n’ mix sweets and sensory boxes – where guests had to guess a ‘day out from childhood’ just by using their sense of touch. The Ball was hosted by Valerie Singleton OBE, one of the first Blue Peter presenters, and featured an evening performance by Charlotte Jaconelli, of Britain’s Got Talent fame. A live auction was conducted by Charles Hanson, from Bargain Hunt.

While guests were there to have fun, they also came along to support Sense International and raise money for the Finding Grace appeal, which aims to screen 300,000 infants in Kenya and Uganda.

Between 10 June and 10 September the UK government will match donations from individuals to the appeal pound for pound. The evening was underpinned by a single, vitally important message: the earlier we are able to find deafblind children in East Africa, the better their future.

We are delighted that the Ball has so far raised over £200,000 in total, with a significant portion of these donations contributing to the Finding Grace appeal. This one night of fun and generosity means a brighter future for thousands of East Africa’s deafblind children.

The NASA space probe Voyager I sends the first high resolution images of Saturn back to scientists on Earth.

1980

Summer2015 Talking Sense 13

Fundraising news

Intrepid climbers summit Snowdon to raise money for Sense

Running and challenge events – take part in an exhilarating event to raise vital funds

F

or the last couple of years, our National Events Team has seen a huge increase in the number of people who are taking part in their own running or challenge event to raise money for Sense. Last year alone, these people raised over £95,000!

Open running and challenge events like these are a really great way to fundraise because you are free to set your own fundraising target. Plus, we don’t have to pay for the cost of places, which means more of the money you raise goes towards our work.

1983

There are hundreds of open events in the UK and beyond that you can get involved in. Here are a few to whet your appetite: • Tough Mudder – various locations and dates • National 3 Peaks Challenge – various dates • Bath Half Marathon – March 2016 • Coast to Coast Cycle – various dates • Great Yorkshire Run (10k) – September 2015 • Tokyo Marathon – February 2016

To find out how to register for these events, or any other challenge, contact our National Events Team on 0300 330 9257 or email events@sense.org.uk Anyone who fundraises for Sense will receive our fantastic welcome pack, filled with lots of advice on training and fundraising, plus those all-important sponsorship forms. You will also be sent a free official Sense t-shirt or running vest to wear during your challenge.

Don’t hesitate – get in touch today!

Sense begins to provide services to people with acquired deafblindness, including Usher syndrome.

14 Talking Sense Summer 2015

Fundraising news

Balloon faces

Hello,

bring people together we are the Community for Deafblind Fundraising Team!

Awareness Week 2015 orking in Community Fundraising is hugely varied.

W

O

ur summer appeal to supporters starred three-yearold twins Ted and Ernie – and showed how messy play at the Woodside Centre in Bristol has helped Ernie to learn to communicate.

The stars of our appeal also helped us launch the ‘Play’ campaign during Deafblind Awareness Week. The Case for Play report calls for parents of deafblind and disabled children to be given more support to access better play opportunities for their children.

To engage as many people as possible during Deafblind Awareness Week, we asked everyone to create a balloon face to help make the case for play. Deafblind people and their families, supporters, members, volunteers, Sense shops and staff across Sense used their arts and crafts skills to make a wonderful array of smiling faces.

Supporters have so far generously given over £32,000 to our summer appeal, which has helped get the Play campaign off to a great start.

We would like to thank everyone who created a balloon face and helped promote Deafblind Awareness Week 2015. You can read more about the year-long Play campaign on page 17.

We work with supporters on a wide range of fundraising activities – from coffee mornings to skydives, dress-down days to university groups, and supermarket collections to school events.

We provide fundraising support and guidance to groups and individuals, and supply the materials they need to make their activity a success. The more orange and purple Sense-branded items the better!

Our team is expanding: we will soon have Community Fundraisers in the North (Wakefield), the West (Birmingham) and the South East (London). We are always looking for members and volunteers to help deliver our message – if you are able to help collect a cheque or talk about Sense’s work please let us know.

Get in touch Phone: 0300 330 9257 (voice) or 0300 330 9252 (text) Email: community.team@sense.org.uk Post: Sense, 101 Pentonville Road, London, N1 9LG If you would like to learn more about the Community Fundraising activities we support visit www.sense.org.uk/ content/fundraise-your-local-community

Senior Community Fundraising Manager David Steele (left) and Community Fundraising Manager Carl Williams (centre), with celebrity chef Sophie Michell at the Stratford Upon Avon Food Festival.

Nintendo’s Family Computer, also known as the Famicom, goes on sale in Japan.

1983

Summer2015 Talking Sense 15

Campaigns briefing The 60:60 Vision Campaign A lot has changed in the 60 years since Sense was founded – and there will be many more changes in the next 60 years. How do you want the world to be for deafblind people in 2075?

Perhaps, like the young people in Sense’s Being Me group, you’d like young deafblind people to have opportunities to make friends? Maybe, like Daniel, you’d like deafblind people to be able to work as easily as anyone else.

Perhaps, like some young campaigners, you’d like there to be a deafblind prime minister? Whatever your vision of the future, we’d like to hear it.

We will use your visions to engage policy makers, to help them understand the lives and expectations of deafblind

people, and show them where their policies need to take us.

Your vision of the future could be mundane or wild, realistic or impossible sounding. Accuracy doesn’t matter!

This is about starting a conversation about the future, being creative and opening up new possibilities.

Do get involved! You could Tweet us using the #6060vision hashtag or send us a postcard or email.

Maybe you’d like to make a short video or audio clip, or perhaps write a story about a deafblind person set in 2075. You could even express your creativity with art.

For more information, or to send your visions of the future, go to www.sense.org.uk/content/6060-visioncampaign, email campaigns.info@sense.org.uk, or call the Public Policy team on 0300 330 9258.

New right to accessible health and social care information

Sensory impaired patients now have the right to receive healthcare information in the way that is right for them.

The government has now approved The Accessible Information Standard. This instructs health and social care providers to offer information in accessible formats and communication support for appointments where appropriate.

Anyone who has information or

1985

communication needs caused by a sensory loss, disability or impairment is covered by this. So if you need information such as appointment letters in your format of choice, or an interpreter for a health or social care appointment, this must be provided for you.

The Standard applies to all providers of NHS and publicly funded social care – including hospitals, GPs, social care services, pharmacies and others. Services must be following the Standard by 31 July 2016.

How does the Standard work?

Providers must: • Identify, record and meet communication or information needs • Highlight these needs so that anyone accessing the person’s

record (e.g. a practice nurse) will immediately be aware • Share the information with other professionals where appropriate.

For example, a GP should tell the hospital if they refer a patient so that an interpreter or information in the appropriate format can be arranged.

What do I need to do?

If you have communication or information needs highlight these when you next visit your health or social care provider – and ask them to record this in compliance with the Standard. Be aware that services have a year to become fully compliant so may not have mechanisms in place immediately.

For more information visit: www. sense.org.uk/content/accessibleinformation-standard-england or contact Sarah White on sarah.white@sense.org.uk or 020 7014 9373

The first Sense home – where a group of deafblind adults are supported to live together – opens in Market Deeping, Peterborough.

16 Talking Sense Summer 2015

Campaigns briefing

Making the case for play Deafblind Awareness Week marked the launch of our brand new ‘Play’ campaign – with supporters, families, celebrities and MPs making the case for play. opportunities early in life,” says Richard Kramer, Deputy CEO of Sense.

Play is a vital part of a child’s development – it helps them to learn, to understand and to grow.

Watch out!

On 1 October, UK Older People’s Day, look out for a new animated video of older people talking about friendship on Sense’s Twitter page: @Sensetweets

The year-long Play campaign will investigate the barriers to play faced by children who are deafblind and have complex needs – as well as what we can do to break down those barriers.

A new Sense report – The Case for Play – explains why play is so important. It calls for the parents of deafblind and disabled children to be given more support to access better play opportunities.

Why play?

Play gives children the freedom to pretend, create, explore and have fun.

It helps both their education and social development as they learn how to express emotion, engage with others and build a sense of belonging and independence.

Play is especially important to support the development of children who are deafblind – and yet many experience barriers to this.

“Playing in childhood helps us to become who we are as adults. It is vital that children who are deafblind or have complex disabilities are not held back in their development by a lack of play

Isaac Three-and-a-half-year-old Isaac is being helped to develop and communicate through play. He has CHARGE syndrome and a cortical vision impairment, as well as significant hearing loss. He enjoys sensory experiences so Sarah, his Children and Family Support Worker, focuses on using specialist toys where touch is important.

“Once Sarah got involved everything started to get easier for us,” says Kelly, Isaac’s mum. “She brought a game with her, which is about developing the senses using touch and music. Being introduced to that type of play gave me a chance to bond with Isaac, rather than worry how he is doing.”

The Case for Play report calls on local authorities to improve play opportunities for children who are deafblind and have complex needs – and sets out a number of practical recommendations that can be used by families and professionals.

The report is just the start of the campaign. In the autumn, we are launching an inquiry into play that will gather evidence from families, practitioners and other charities on the barriers to play – and the potential opportunities.

For more information visit www.sense.org.uk/play or email campaigns@sense.org.uk

The first episode of EastEnders is broadcast on BBC One.

1985

Summer2015 Talking Sense 17

Campaigns briefing

We’ll show you what we can do!

Six young people, all keen to share their experiences and express their views, came together in June at the new Young Campaigners Group. Svetlana Kotova, Policy and Campaigns Adviser, describes how they identified the challenges they face in the here and now – and how they would like to change things in the future.

One topic that definitely got people going was public transport.

Ellen

E

ach person had their own unique story to tell, and everyone received communication support in the way that suited them – but it soon became clear that there were many things each member of the group had in common.

They spoke about the barriers that they face in their everyday lives and, with the support of the Public Policy Team, explored

1989

what the solutions might be and how we might campaign for them.

One topic that definitely got people going was public transport – or rather the lack of public transport that is accessible to them. “Public transport is a big barrier to me,” said Sonal Somaria. “I travel to school by taxi and I need to become more independent and use public transport.”

After years of Sense campaigns, the government publishes the first guidelines on the education of deafblind children.

18 Talking Sense Summer 2015

Campaigns briefing

Caroline and Beth

Sonal and Simon

We spoke a lot about attitudes and awareness.

The young people talked about the difficulties they can experience at every stage of their journeys and how the needs of people with sensory impairments are often overlooked. For example, it can be difficult to use ticket machines, communicate with the staff or see the bus number. “The main problem is getting on and getting off the buses,” said Bethany Fanthom. “We don’t know which bus this is and the bus drivers don’t always tell you when to get off.”

Some young people spoke about difficulties they have with getting a priority seat. “I have poor balance and need a seat,” said Ellen Watson. “I get nervous about taking a bus during the rush hour.

It is a direct barrier that is stopping me doing what I want to do and getting where I want to be.” One of the problems can be that it may not be immediately apparent to staff or other passengers that someone has a sensory impairment, whereas a physical disability is more easily picked up.

The young people were clear that accessibility to public transport was one of the things they wanted to campaign about and the Public Policy Team will be working with existing campaigns to make this happen.

We also spoke a lot about attitudes and awareness – how difficult it is sometimes to live with a hidden disability and how important it is for others not to make assumptions. “You can’t expect every person to be aware of every single condition,” said Molly O’Brien. “When you tell people what the condition is they don’t know how to react. People need to be willing to ask questions and learn.”

Ellen also had a lot of experience of this issue: “I am often told I am not blind, and sometimes I wonder how the blind person should look like. When I put on my dark glasses and use a cane I joke that now I

look like a proper blind person.”

The young people also talked about other people’s low expectations and the negative impact the general image of disability has on their lives. Some said they felt patronised when other people expressed surprise that they go to university or have a job. “It’s about making people recognise that we are just as capable, and sometimes even more capable, than others,” said Ellen. “We are not poor vulnerable people dependent on support from the government.”

We also spoke about access to public services and how difficult it can be to get a job.

All the young people thought that it was important for them to get more involved in campaigning and to speak out. This would not only help to improve the lives of deafblind people but give them a chance to challenge negative assumptions about their abilities. “We need to speak up for ourselves, so others will see what we are capable of,” said Ellen.

At the end of the weekend, some people said that they felt they now knew more about campaigning and had picked up some useful tips and solutions; others felt encouraged to be more independent and speak up for themselves. “I learnt that I can campaign even though I can’t see and hear,” said Sonal. “I want to make the world a better place.”

If you would like to find out more about the Young Campaigners Group and what it is up to, visit www.sense.org.uk/content/senseyoung-campaigners-group-0 To see a video of the Young Campaigners’ weekend visit www.sense.org.uk/youngcampigners

The Tiananmen Square protests take place in Beijing.

1989

Summer2015 Talking Sense 19

Technology

Voices on technology We asked you to tell us how technology has changed your life – and what you hope the future will bring. Donna Corrigan, Sense Technology Coordinator, received some powerful replies.

Where have we come from?

“When I arrived at Sense (13 years ago) technology was not easy to use and very expensive. Mobile technology, although available, did not have the level of accessibility we now take for granted. Mobile phones today are more powerful than the computers I used 13 years ago and far more intuitive.”

“When I started using computers (around 1990) programmes had to be specially written for use by blind people. We had Wordwise and Talking Wordwise for BBC computers, for example. Then screen reader software came along, enabling most mainstream software to be used but the screen reader had to be purchased separately. Now we are seeing screen readers built in to operating systems, meaning that we can get at least a basic level of access, without making special purchases.”

1990

“It has been incredible watching the advancements in the equipment we have used over the years. Some things are simple everyday gadgets like hot water dispensers. They are much better and more reliable than a few years ago and are great for making a mug of tea or coffee without worrying about burning ourselves or making a mess.”

How has technology helped you?

“Technology has a massive, positive impact on my life. It enables me to live independently, work, study, find information, shop, keep in touch with people and so much more. If it wasn’t for online grocery shopping, I would have starved to death many times over.”

“Technology is fabulous and I couldn’t live without it! It is a life changer! It gives me such a boost to my confidence and enables me to have a pretty good independent life.

I can cook by myself, read my mail, use the mobile and landline, and go out to visit places with only an occasional need for assistance.”

Sense is established in Northern Ireland.

20 Talking Sense Summer 2015

Inspired?

You can get help from Online Today, a project funded by the Big Lottery Fund: www.sense. org.uk/content/online-today or email: technology@Sense. org.uk Alternatively contact our Information and Advice line: Tel: 0300 330 9256 or 020 7520 0972, Textphone: 0300 330 9256 or 020 7520 0972, Fax: 0300 330 9251

Technology

Gestures and speech recognition are now being used

What would you like to happen in the future?

“The future of technology for people with disabilities still has a long way to go. Gestures and speech recognition are now being used, although the use of brain and nerve impulses to control technology (although experiments have shown this works) remain firmly in the fiction of Star Trek.”

“There is a need for more tactile refreshable feedback mechanisms.

The move towards the single solution of a flat screen for everything is not good.”

“I hope that in the future more developers will take accessibility seriously, so that all websites and software are fully accessible.”

“I hope that in future technology will be able to replace interpreters and guides for people like me, giving me far more flexibility and spontaneity.”

Sense’s 60:60 Vision campaign Sense’s 60:60 Vision campaign is asking deafblind people and their families to tell us what they want the world to be like in 60 years time. Many of the suggestions so far have been technological, including: • Robots to enable communication between people who use different forms of communication • Technology that automatically adjusts lighting levels around the user, even outdoors • Quick and simple 3D printed maps.

With thanks to Chris Fox, Liz Ball and Shaun McGarry for their comments.

STAR PRODUCT! Next Generation Text Service (NGTS) by Janet Caldwell (Sense Digital Champion for Online Today) “I would recommend BT’s marvellous device, which makes it possible for deaf people to use the phone. I am quite severely deaf, and had avoided telephoning for years, relying on emails and text – but there are times when a phone call is best.

The service has been around for a while now, for people to use at home, or in the office – but in one place. Our friends at BT have developed a stunning update, which enables it to be used on the move: even on a smartphone – for example, with no other assistance, no cables, no chunky equipment, just a device with a WiFi connection!”

To read the full article visit: http://blog.sense.org.uk/technology/2015/06/ 26/new-generation-textfarewell-to-telephone-hang-ups/ To read more about NGTS visit: www.NGTS.org.uk

Nelson Mandela is released from Victor Verster Prison, South Africa, after 27 years behind bars.

1990

Summer2015 Talking Sense 21

60th Anniversary

Sense – part of a social revolution

Sense is a unique organisation. It serves people with some of the most challenging disabilities, has always worked closely with families, and has its own particular history and culture, writes Colin Anderson.

But it has also been shaped by, and reflected, broader changes and developments in society – such as changing attitudes towards disability and the growth of the voluntary sector.

1991

The Glasgow Family Resource Centre opens.

22 Talking Sense Summer 2015

W

hen we still hear, in 2015, about families struggling to get the right support for their child, or an older person not coping, it can sometimes feel like nothing has changed. But if we look back it is amazing how far society has come in the last 150 years.

The voluntary sector has it roots in the 19th century. The NSPCC for example, was set up in 1884 and its approach then is still highly relevant today. It identified a social problem (in this case, child abuse), looked for viable ways to help the victims, then campaigned for the government to adopt these methods – because only the state had the resources to deal with this on a national scale.

In the 20th century this state social provision and spending gradually grew in areas such as housing, health and education. At the same time, a succession of new voluntary organisations grew up, especially in the 50s and 60s, often started by women who responded to gaps in provision.

Sense – or the Rubella group as it was first known – was one of these.

It was founded in 1955 by Peggy Freeman and Margaret Brock as a self-help and support group for families whose children had been born deafblind as a result of their mothers catching rubella in pregnancy.

Attitudes to disability had also gradually been changing over the century, partly as result of men returning from the First and Second World Wars with physical disabilities and mental trauma. Some of these men were in the vanguard of

60th Anniversary campaigning against poor access and inequality and a ‘social’ rather than a ‘medical’ model of disability emerged. Eventually, in 1995, the Disability Discrimination Act was passed.

Those early Sense parents also had a battle on their hands. There was almost no help for them and little understanding of the impact of deafblindness. One of their first priorities was to share information about their children’s needs so they set up a newsletter, still going strong as Talking Sense.

They also began campaigning, establishing allies, holding conferences, offering training and winning over hearts and minds.

In the 50s their children had been described as ‘ineducable’ but very gradually they won the argument.

The 1970 Education Act – which paved the way for special units to be set up – was the first breakthrough.

The 1981 Education Act was another important step as it introduced the concept of disabled children having ‘special needs’ and the right to an assessment and statement.

B

y this time, those original children from the Rubella Group were growing up and, just like today, their parents were concerned about what would happen to them when they left school and where they could live in the future.

Thanks to a successful appeal by the Magpie children’s programme in 1974, our first residential and education centre opened in 1980 for 12 deafblind adults at Market Deeping near Peterborough.

This reflected a sea change in society. For many years, people with all sorts of mental, physical and learning disabilities had been placed outside society – often in large, bleak Victorian institutions. One young deafblind man, for example, was kept sedated and tied to a chair because the hospital staff didn’t know how to cope with him. This man has now lived happily in supported Sense accommodation for many years.

Public opinion increasingly turned against these longstay institutions.

As public opinion increasingly turned against these long-stay institutions the policy of community care was introduced and Sense responded. Our first group home in Market Deeping was followed by others in Edgbaston and by the end of 1999, Sense had 73 group homes throughout the UK, providing supported housing and further education.

Another significant change was that fewer and fewer children were being born with rubella damage as result of immunisation. However, developments in medical science meant that increasing numbers of children were surviving difficult births, syndromes and medical conditions so that today Sense supports many children who are multi-sensory impaired, often with considerable physical and learning

disabilities as well.

In fact, Sense has broadened its scope and activities in numerous ways since we began. In 1983 we started working with people with acquired deafblindness, including those with Usher syndrome and – as people are now living longer – we have developed creative ways to help older people with dual sensory impairments to keep their independence and stay in touch.

W

e’ve also greatly extended our geographical range: Sense Scotland launched in 1985, Sense Northern Ireland in 1990, and Sense Cymru in 1993.

Sense International began its work in 1993 and now helps to develop services for deafblind people in Bangladesh, India, Kenya, Peru, Romania, Tanzania and Uganda.

Today, Sense’s activities are still enormously affected by broader forces and changes in society. New technology for example, is offering unforeseen opportunities for people to communicate and participate.

And the new social care legislation has the potential – if properly funded – to improve the co-ordination of care for families, which has been a perennial problem.

Whatever happens in the next 60 years however, it is fairly safe to say that our world – and Sense’s – will have developed in all sorts of ways that we would never have expected!

Tim Berners-Lee announces the World Wide Web project and the first website, ‘info.cern.ch’ is created.

1991

Summer2015 Talking Sense 23

Sense’s 60th birthday

“I like my intervenors because they like playing. We run around in the garden and make costumes.”

Sam Cowell

Voices To help us celebrate Sense’s 60th anniversary we have been gathering together a myriad of voices from the people who matter – the individuals and families we serve, and the staff and volunteers who give so much.

You will be able to read these voices in full on our website as the year progresses at www.sense.org.uk/60voices In the meantime, here is a taster…

1992

The first intervenor service begins in Lincolnshire, providing weekly support to families at home.

24 Talking Sense Summer 2015

“I am really proud when I see the lady I support being recognised for her art, or another person feeling safe and confident to give swimming a go. It’s just amazing.”

Allie Giles, a Sense Intervenor

“We heard about Sense 47 years ago and we would not have managed without them. They helped us through the bad times and there certainly were some. I look back now and think how did we ever get to here and Janet so happy?”

Brenda Carter, mother of Janet

Sense’s 60th birthday

“I cover a large area and there can be a big length of time between when I see people again. I feel privileged to see the positive changes in people during these periods of time.”

Chris Fuggle, Behaviour Support Manager

“To my mind, Sense has achieved its special nature by the passionate involvement of families working together with those professionals who empathised with their situation, and who set out to create an organisation that could achieve anything it wanted – whilst remaining itself a family, no matter how big it might become.”

Rodney Clark, former CEO of Sense

“One special memory I have is supporting a person who had been on a mental health section and came to Sense as a last resort. His behaviour was difficult at first and two-to-one support was needed. But he has achieved so much over the years with the support of the staff and is now living semiindependently with one-to-one support.”

Sue Riley, Assessor and Internal Quality Assurer

“I am a deafblind mum of one and although I’ve only been involved with Sense a relatively short time I have already seen positive changes due to my involvement in the organisation – not least I now use a Sense Communicator Guide who works very well with me and my eight-year-old daughter Mary-Elizabeth.”

Janice Tillet

“Sense is a place we can go and not feel judged, where my husband and I can talk to people who understand how we feel. I think we would all be lost without it.”

Jo, Imogen’s mum

“Sense has given me a feeling of belonging – which is so right. When you’ve grown up not knowing what is wrong with you, struggling, having a few shaky moments, it’s so nice.”

Sheila White has had a communicator guide for six years

“Sense is a charity that has stood up for me ever since I was diagnosed when I was 16. It is my first port of call when things are starting to go wrong and I’m very grateful to have it there as my back-up. Happy Birthday Sense!”

Ellen Watson

Betty Boothroyd becomes the first woman elected Speaker of the British House of Commons.

1992

Summer2015 Talking Sense 25

Sense’s 60th birthday

“I like going to Sense and seeing friends there and the children. I think it’s great that it is Sense’s birthday. I think we should have a party to celebrate 60 years – maybe from morning til late!”

Caroline Potter

“I got involved in Sense about two years ago – and their support has had a profound impact on my life.

I have seen things that I had no idea existed or were available to people like me. The support I have received has been immensely rewarding in every way.”

Marcus Inniss, Sense Ambassador

“We’re so thankful, that we had support from Sense right from the beginning. Amelie’s come so far since that early intervention.”

James, Amelie’s dad

“My late mother Gertie Witt was one of the founder members of Sense and she would be very pleased and proud. I understand what the parents of deafblind children have to cope with, because she had to fight for a decent education for me.”

Sheila Anderson, Sense’s longest serving member of staff

“I like the support they have given me with my sight loss and have helped me to tackle problems like moving to independent living.”

Joe Coffin

1994

“I’m glad that Sense has been able to help me with my problems, such as work experience, doing some of the hard work for me.

Happy Birthday Sense – you’re 60!

Wahey!”

Sonal Somaria

“Before we discovered Sense, it was so hard. Matthew was so shy – he wouldn’t communicate in any way. He so bubbly now, it’s wonderful to see.”

Helen, Matthew’s mum

“We were first introduced to Sense in 1988. For the first time we met families we could identify with, who understood and empathised about the problems we were all experiencing in getting the right kind of support for our deafblind children.”

Sue Turner, mother of two sons who are deafblind, and a Sense Trustee

Sense International is set up to support the development of services for deafblind people in some of the poorest parts of the world.

26 Talking Sense Summer 2015

Sense’s 60th birthday

“It’s special to see children who had such a dreadful start to life through catastrophic health problems, not only surviving, but succeeding in so many ways.”

Jenny Fletcher, Deputy Head of Children’s Specialist Services

“There’s a lady that comes into the shop in Selly Oak and I love to watch her communicate – she’s taught me a bit of signing! It’s just knowing you’re doing something to help.”

Katherine Kelly, Shop Manager, Yardley

“I hope Sense will remain a forward-thinking and innovative organisation delivering services and needs to a variety of people for many years to come. They have been a very successful organisation for the last 60 years and I wish them every success for the future.”

Ian Capon

“Sense helps me very well. Staff are nice, do things. Make friends here.

Happy I am.”

Kevin at Touchbase SE

“Like everyone who works here, I want to make sure everyone is supported in the right way and they can make the most of their lives. My brother is supported by Sense, so it’s personal to me: I want to give the same level of support that I expect for my brother.”

John Kirkham, Assistant Day Service Manager, TouchBase South East

“One of the best times was when I met older people with Usher. It was an amazing experience to communicate and laugh and feel on par with them. One person told me that they were so grateful to meet me and talk to someone.”

Samantha Browne, who has Usher

“Lucy has been part of Sense for 30 years – half of Sense’s existence! Sense is a rich resource for everything: advice, meeting other families, comradeship and expertise. Nothing compares.”

Michael Adeyeye, dad of 35-year-old Lucy

“It’s about building trust, building confidence and celebrating results.

It makes me proud to work with a charity that makes a difference.”

Jon Fearn, Community Services Activity Instructor and Co-ordinator

The Channel Tunnel, which took 15,000 workers over seven years to complete, opens between England and France.

1994

Summer2015 Talking Sense 27

Sense’s 60th birthday

“I’ve just come back from the DBI (Deafblind International) World Conference in Bucharest, Romania with Sense. I enjoyed it very much!”

Steve Thacker

“The best phone call we ever made was to ring Sense for their help. Our son Chris had a very rare neurological condition and he was deafblind. He got tremendous practical and emotional support and it restored fun and laughter to his life.”

Ann and John Chapman “It is so therapeutic for our family and our marriage to have true respite to recharge. Thank you so much.”

A Sense family

“When I was at school I didn’t have any friends, I didn’t have much confidence, I used to stay at home. The first time I got in contact with Sense they took me out and I made friends and I gained in confidence – it just gave me a new life.”

Bethany Fantom

“Sense reduces my feeling of isolation and it’s nice to be with other people in a similar situation.”

Kathy Rawlins

“People often see Isaac’s disability before his personality. At Sense it’s different. He’s not a diagnosis, he’s just Isaac – the cuddly, fun-loving boy I love.”

Kelly, Isaac’s mum

1999

“One really special moment was when I visited Emmanescu, a kindergarten for deaf children in Romania, and met some of the parents with Rodney Clark and Richard Hawkes. We explained about the small but passionate group of Sense parents who first came together over a kitchen table in 1955.

When we came back 30 minutes later we were amazed and delighted that the parents had decided to form the first ever Parents and User Association in Romania – what a moment to be part of.”

Liz Duncan, Head of Acquired Deafblind Services

Sense organises its first mass lobby of Parliament – Yes to Access – where over 200 deafblind people and their supporters argue for more support.

28 Talking Sense Summer 2015

Sense’s 60th birthday

“I enjoy meeting other people at the forum and listening to how they cope with their sight and hearing loss, and learning about the equipment they use.”

Stan Turnbull

“I started as a support worker in a residential service. I saw the post advertised, went for an interview and met several deafblind people.

I enjoyed sitting on the sofa talking to them and just felt at home.

I got the job and from then on I was hooked!”

Josie Bell, Family and Branches Liaison Officer

“What is Sense? – campaigning, supportive, technical advice, social aspects, feelings of inclusion, part of a ‘family’, friendly and sincere staff – but there are many others.”

Mark Pampel

“My job makes me proud. I have a disability myself and do not have a lot of confidence in myself – but working with the deafblind people and for Sense for 25 years has helped me build my confidence.”

Louise Davies, Receptionist at Sense, Birkdale

“Volunteering with Sense has been one of the most challenging and rewarding experiences. It has provided me with invaluable skills such as determination, motivation and a higher appreciation for all the work carers do.”

From one of our wonderful volunteers

“The forum is brilliant. We have companionship, share information and support each other, everyone looks forward to our monthly meetings. It’s a very happy group.”

Pat Cree

“One of my standout memories was seeing one person’s progress at swimming. They went from not even wanting to go to the pool, to not wanting to get changed to now going twice a week and loving it! There was a lot of work involved but it was amazing to see.”

Cheryl Marr, Residential Care Manager

The Euro currency is launched but the UK government decides not to join.

1999

Summer2015 Talking Sense 29

Sense trading

Flying on a magic carrier bag Louis Syed-Anderson – aged 15 and a budding photographer – recently spent time with Sense Trading.

His brief was to create a photo story that shows how the goods donated to our shops are magically converted into vital services for deafblind people.

1

2

Step

A donation is made

A volunteer sorts out goods in our warehouse

Mark Cocksedge

Step

Step

5

Step

Putting the stock out in the shops

2001

6

Money in the till!

The Deafblind Guidance, which requires local authorities to assess deafblind people’s needs and provide appropriate services, is introduced.

30 Talking Sense Summer 2015

Sense trading “Joining Sense for work experience I was intrigued to see how this complex journey – from the goods that people often donate in carrier bags to raising money – actually works.

First stop was the huge Sense warehouse and distribution centre in Crayford to see a vast array of donated items filling the shelves.

From Beatles’ records to rare matchboxes worth £800, the Online Selling Team said how ‘gems’ are regularly donated to the Sense shops.

The team are responsible for selling high value items that can raise good

Step

money online. The warehouse is also responsible for distributing donations to the 95 Sense shops nationwide.

That afternoon I joined Dave, one of the van drivers who deliver goods to Sense’s shops. Each location we visited was full of volunteers doing everything from steaming and pricing, to helping and chatting to customers. Clothes will spend two weeks on the shop floor to attract customers before being re-distributed around the UK. On my second day I met Tessa O’Brien at the new Sense shop

3

Step

Some of the goods are sold by the Online Team

Donate your goods To find out how to donate to a Sense shop please visit www.sense.org.uk/shopdonate or call 01322 554999

4

Volunteers sort and clean some of the goods

7

John Angerson

Step

It made me realise how all this effort is so worthwhile because it means that every sale – small or large – helps Sense to support more deafblind people.

at Barkingside and the tills were ringing. As the sales came in, it made me realise how all this effort is so worthwhile because it means that every sale – small or large – helps Sense to support more deafblind people.”

Support for a deafblind child and their family

2,977 victims are killed in the September 11 attacks at the World Trade Center in New York City.

2001

Summer 2015 Talking Sense 31

Bethany blooms

I am now more outgoing and confident in talking to people.

Helping out at the Deaf Club

Bethany blooms from a shy teenager to a young woman with plans

I

t hasn’t been an easy journey for Bethany Fanthom, 22. She has Usher syndrome and for a long time felt that she just didn’t fit in. “I didn’t enjoy school because it was rubbish to be honest,” she says.

“The teacher didn’t really believe I was deafblind. One time I went to

2003

the toilet and the lights went off, it was dark and the teacher was saying ‘What are you doing?’ I don’t know what happened. I think the children had been playing a joke on me.”

“When I was at school I didn’t have any friends and I didn’t have much confidence. I used to stay at home

Sense plays a key role in the Early Support Pilot Programme, a government initiative to improve services for families with disabled children under three.

32 Talking Sense Summer 2015

Feature and I was really bored.”

Her mum, Julie, was very worried about her. “A few years ago my beautiful, clever daughter was isolated and shy with no confidence and seriously depressed,” she says.

“She felt ostracised from the deaf community because of her poor vision.”

She got in touch with Sense around this time and was introduced to Diane Cardwell who became her Communicator Guide. At first she was so shy that she didn’t sign or talk to anyone except her family but gradually – with Diane’s encouragement and support – her confidence grew. “The first time I got in contact with Sense they took me out and I made friends and gained confidence,” says Beth,” it just gave me a new life.”

Another important stepping stone was that Sense organised for Beth to go on some cake making courses – and it turns out that she is a very talented baker. “I loved the course,” she says. “I made a wedding cake with flowers on it, I made a cake for my friend for her baby shower and another one for a volunteers’ Christmas party. I’d really like to work in a cake shop.”

These achievements have given her a foundation to build upon. “I volunteer at the Sandwell Deaf Club now,” she says. “At first I was a bit shy and didn’t know what to say. Then as we got to know each other I got more confident. I felt better and started loving going out, enjoying myself.”

“For the Deaf Club I make cakes at home and take them to the club, make coffee, give out food and

Bethany in Blackpool biscuits. I am now more outgoing and confident in talking to people.” She also volunteers on family weekends with deafblind children.

Another key moment was in March when she went to the Houses of Parliament and spoke to Kate Green, Shadow Minister for Disabled People to explain the barriers that deafblind people face. “She was a little nervous at first,” says Diane, “but she explained herself well and became confident once she started.”

This got Beth interested in campaigning and in June she attended Sense’s first Young Campaigners Weekend (see page 18). She wasn’t shy at all about putting her views forward. She met other deafblind young people and socialised in the evenings, chatting away using hand-on-hand signing with another deafblind young woman and communicating to other young people through the interpreters.

Those who know her are thrilled by the progress she has made. “The difference between Bethany before Sense and now is as different as night and day,” says her mum. “She

The cakes she made for the Christmas party is happy and confident and can stand up for herself and ask for what she wants. I have been given my daughter back – she is now a strong, confident, independent woman who succeeds in all she does.”

Bethany has also started to use her white cane with confidence and recently took a very significant step.

“Yesterday morning I went out for the first time without my Mum,” she says, “I took my stick and went and bought milk.”

She’s very excited about being trained in how to use the cane and is hoping to be offered a guide dog in the future, Then hopefully she will have luck in finding a nice little flat near her family and start her own cake making business ... she’s got everything to play for!

The Human Genome Project is completed, with 99% of the human genome sequenced to 99.99% accuracy.

2003

Summer2015 Talking Sense 33

Arts and wellbeing

Walking group making great strides

A

new walking group for older people with sensory impairments has been set up in the London Borough of Hounslow, thanks to support from the Public Health Small Grants scheme.

The walking group has taken advantage of the wonderful early summer weather, getting older people from the borough active by taking a weekly stroll around Lampton Park. The group has been set up to improve social inclusion, and is ably supported by enthusiastic volunteers from Get Active Hounslow (coordinated by St Mary’s University) and Sense staff.

Our sensory landscape Arts take centre stage during Deafblind Awareness Week

D

eafblind Awareness Week in June saw the launch of a number of innovative arts projects, showcasing the creative work of deafblind people from across the country.

Sense took over the Ayscoughfee Hall Museum in Lincolnshire for the Poems of the River exhibition. The event celebrated the achievements of people from Glenside Resource Centre, who took part in a six-month project with poet Laila Sumpton to create poems, stories, photographs and artwork inspired by the river.

Participants also worked alongside sound artist Daz Disley to compose sound pieces of creatures found by the river banks – from eels and ducks to herons and rabbits.

2005

Our Fill in the Gaps campaign raises awareness of the needs of older people and how they can be supported.

34 Talking Sense Summer 2015

In another exciting project, sound artist Matt Lewis worked for six months with over 80 people to create an immersive sound installation called No Such Thing As Empty Space.

The project, which was supported by Arts Council England, involved people from the Hampton Resource Centre in Peterborough, Keech in Luton and the GOT group in Cornwall, who took part in creative sessions featuring music making, improvisation, field recordings and composing.

The field recordings were collected in many locations, from airports and stations to cathedrals and swimming pools, and experimental music produced by the participants was used for the installation. The resulting sensory soundscape has toured Peterborough and beyond: you can still catch the show in Milton Keynes in September.

Arts and wellbeing

Capturing the moment Ten people from the TouchBase South East centre in Barnet recently took part in an exciting photography project, run with the support of creative charity PhotoVoice. The sensory project has given deafblind people the opportunity to express themselves from behind the camera lens and share – through their photos – what is important to them.

T

he group of ten spent six weeks with Becky Warnock and Tom Elkins from PhotoVoice, learning photography skills and exploring light, objects and their personal interests. The sessions were fun, fully inclusive and packed with specialist technology; one person, who is unable to use his hands, was given a special switch that he could bite on to take a picture.

At the heart of the project was a desire to give each person the chance to express themselves, and really show off their personality. One member of the group, Marcus, chose cars, taking a stunning picture of his reflection in a Bentley (pictured below).

“People were making personal statements through their photos,” says Lorna Maass, who supported the project.

“Everyone was different, and each person showed a different side to their personality. Most importantly, they were leading and making the choices.”

The project has helped staff at TouchBase to learn new things about the people who took part – and they have

also seen a change in the way the group interact and a massive improvement in people’s self-confidence.

“One lady I work with always had to be prompted,” says Lorna. “Before this project, I worried that maybe I was prompting her too much but from what I’ve seen through PhotoVoice she is capable of doing much, much more.”

The group held an exhibition of their photographs at the TouchBase centre during Deafblind Awareness Week on 24 and 26 June. The exhibition not only gave the group a chance to share their voice, but also offered a unique insight into how the world can be perceived with different senses.

Kara Jarrold, Head of Arts and Wellbeing at Sense, says: “Through our arts programme we seek to constantly challenge forms for making and presenting art. The PhotoVoice project creates new and exciting opportunities for the people we support to break down the barriers to expressing themselves and connect with the world around them.”

To find out more about the project visit www.photovoice.org/sense

Hazel (right) working on her shape project with Becky

The IRA issues a statement formally ordering an end to the armed campaign it has pursued since 1969.

2005

Summer2015 Talking Sense 35

Football focus

The roar of all the crowd

Lord Faulkner, a Labour peer in the House of Lords, spoke to Colin Anderson recently about his Private Member’s Bill which is aiming to ensure that football clubs treat their disabled fans right.

L

Lord Faulkner

2008

ord Faulkner has been a passionate football fan all his life. Although, as he admits regretfully, never a successful player, he qualified as a referee and has supported a number of teams depending on where he has lived – Watford, Oxford United and most recently Worcester City where he is a season ticket holder.

He also takes a keen interest in disability issues and was part of the government’s Football Task Force in 1998, which produced recommendations about disabled access to football grounds. He is also Vice President of Level Playing Field, (formerly the National Association for Disabled Supporters), and plays an active role in many other bodies

and organisations.

Some football clubs, such as Southampton, have actively addressed the need to make their stadiums more accessible he says – and community projects for young disabled players are common. But many other clubs seem to do as little as they can get away with – and attitudes to disabled fans can be negative. “It is because a lot of the Football Task Force’s recommendations still haven’t been implemented that I’m determined to take this Private Member’s Bill through Parliament to give some statutory backing to what we want to do,” he says.

The nub of his Accessible Sports Ground Bill is that local authorities may refuse to give a

Sense hosts the Deafblind International Co-Creating Communication with Persons with Congenital Deafblindness Conference in Leeds.

36 Talking Sense Summer 2015

Football focus football ground a safety certificate if it fails to meet the requirements of the Accessible Stadia Guidelines, as published by The Football Stadia Improvement Fund and The Football Licensing Authority.

It is something we have to do as a society.

Patchy progress Generally, disabled access to public buildings and services has greatly improved in the last 30 years although there is still much to be done.

“Even though you have ancient buildings that are not naturally disabled friendly,” he says, “there is a legal requirement to provide accessible toilets, step-free access, space for wheelchairs and so on and people have had to get on with it – whether you are running a hotel or a restaurant – and quite right too. It adds to the cost of the business but I think that most people take the view that it is something we have to do as a society.”

“The best example in recent times was the 2012 Olympics where disabled people were involved in the planning of all the spectator venues from the beginning and every venue complied fully with what was required. The new Wembley is very good too.”

Sadly he also hears about many football clubs not getting it right: “There are some very bad examples of how people are treated. The worst, simply because it is the richest club, is undoubtedly Manchester United who fall well short of what they should do. One thing they can’t do is to plead poverty; they may have to give up some seats, and lose some revenue, but that is part of their responsibility as members of the wider community.”

He describes horrific examples of people who have been turned away from Old Trafford. One young man was given the suggestion that he might support Stockport County. Other people have had walking sticks confiscated on the grounds that they could be offensive weapons, although it was essential for their mobility.

The attitudes of some fans can also be worrying.

“It isn’t acceptable for away fans to be put in with the home fans; there have been reports of some very unpleasant behaviour being directed at away disabled supporters. There is a degree of intolerance of disabled fans which I find depressing and disturbing.”

Making progress Other sports seem to be taking a more positive attitude. “Recently for example, rugby league have asked Level Playing Field to audit their Super League clubs and to come up with recommendations of what they need to do to meet the standards,” he says.

How has the football world reacted to his Bill?

“They are watching quite anxiously I think,” he says. “A very senior official from the Football League told me privately that he welcomed the Bill because ‘our clubs need to be given a nudge.’”

His Bill was passed by the House of Lords on 17 July and he hopes that the government will now support it – and there will be sufficient time in the Commons to pass it.

“What I hope,” he says, “is that, in 20 years, it will be possible for disabled people to take a decision at relatively short notice that they’ve decided to go to a football match – without the hassle of being put onto long waiting lists or told there aren’t any tickets available, to be welcomed to the ground and for them to have a great time.”

Further information Accessible Stadia Guidelines: www.levelplayingfield.org.uk/sites/ default/files/contentfiles/accessible_ stadia.pdf

Barack Obama is elected the 44th President of the United States, the first African-American to hold this position.

2008

Summer 2015 Talking Sense 37

Football focus

It’s a

Bhoys thing

V

isually impaired Celtic fan Jim Lewis describes what ‘The Bhoys’ mean to him – and how his whole life has been intertwined with the club.

It’s approaching 40 degrees Celsius and sweat is running into my eyes. I feel thirsty and a little lightheaded. I’m so nervous I can hardly speak.

I’ve spent more getting here for a single day than most people spend on a fortnight’s holiday. But at this moment there’s nowhere I’d rather be.

I’m in the Olympic Stadium in Seville on the evening of 21 May 2003. My beloved Celtic FC are about to kick off in their first European final in 33 years – the UEFA Cup Final against FC Porto. This will always be a lifetime highlight for Celtic fans of my generation who can’t

2010

remember our club’s greatest sides from the late 1960s and early 1970s. This is literally our moment in the sun.

Being a Celtic fan has been an important part of my life since childhood. When I was ten I started attending games with my dad and twin brother Alan. We are both severely visually impaired. On a clear day I can see large objects such as lamp posts but can’t make out any detail. I also have mild to moderate hearing loss in one ear.

When we started going to matches we would just buy tickets and stand on the terracing. This didn’t work for me and my brother because we didn’t have much idea what was going on and at this stage my dad couldn’t commentate.

We then found out that there was specific

Sense International (Romania) celebrates ten years of improving the lives of deafblind people, including 27,000 babies receiving vision and hearing assessments.

38 Talking Sense Summer 2015

Football focus provision for visually impaired (VI) fans, and started sitting with them in the main stand. This meant we could get commentary on games and also get to know other VI fans. I have attended games at Celtic Park ever since, and as a teenager also travelled to many away games.

There are now 40 VI season ticket holders.

Most of them live in Glasgow and the west of Scotland and a few like me live in England. We have a dedicated commentary service and my dad is one of the commentators. VI fans listen to the commentary using a headset and receiver. I switch between this and listening to the radio to get the latest scores from other games.

I’ve been asked by non VI fans why I bother attending games? People often think that VI people will be interested in music, audio books and possibly even TV, but seem surprised when they meet someone like me who is football and sports mad.

A close friend and former flatmate in Dundee confided that he was stunned that we chatted about Dundee United’s 1994 Scottish Cup win when we first met. He had assumed when he saw me that I wouldn’t be interested. I understand why people think this way, but they are confusing the reasons why people actively support a team.

I live in London and have to travel approximately 900 miles to get to and back from each Celtic home game I attend. I don’t do this to go to any old football match. I could get tickets for games in London if I wanted. I do it because of my identification with the club – and actively supporting them means I have an extra reason to travel back to see family and friends.

In a football-obsessed city like Glasgow it would be surprising if VI people didn’t become interested in the game. It would be easier of course for every fan, VI or not, to just buy a subscription to Sky Sports and watch action replays of key moments in the comfort of their own home. But the actual match day

experience remains extremely important for active supporters.

In my experience, provision for VI fans at football stadiums is fairly good. In Scotland, supporters tend to join together in associations and get to know each other; in London, fans tend to go to matches more as individuals and to contact the clubs themselves about any issues.

Through attending matches you build up a lifetime of memories.

I think both approaches have their benefits.

One improvement would be that there is greater flexibility in where VI fans sit. At the moment, to get a discounted ticket a VI fan has to sit in a specific section for disabled fans – which discourages those who would rather sit with friends.

One solution would be to introduce a sliding scale of prices for VI and other disabled fans depending on where in the stadium they wanted to sit. The argument against this is that stewards in the disability section have specific disability awareness training – but surely this could be offered to all stewards as part of basic requirements for stewarding professional matches?

Being a Celtic fan is an important part of my life. Some of my happiest moments have been spent supporting the team. Through actually attending matches you build up a lifetime of memories and feel a surge of anticipation about the next match you will be going to. My visual impairment obviously affects how I follow matches but the identification with the team and pride in supporting them is the same as for any other fan.

Burmese opposition politician Aung San Suu Kyi is released after being under house arrest since 1989.

2010

Summer 2015 Talking Sense 39

keeping mySense members in touch

Membership Matters

Holiday plus

W

elcome to the latest edition of Membership Matters! Unfortunately the regular editor Libby Hawkins is away at the moment so I have taken up the reins for this issue.

We all wish her a speedy recovery and look forward to seeing her back soon.

Eve and Julie Melvyn and Meryl If you have news or views you would like to share, or if there is something you would like to see in the next issue, n early June, a group of six older deafblind people please get in touch. enjoyed a Sense Holiday Plus break in Teignmouth, Devon, supported by seven volunteers and two Colin Anderson leaders. The group stayed at the Cliffden Hotel close colin.anderson@sense.org.uk to the beautiful Devonshire coast. visit They spent the week going for days out in the local area, To find out more about free mySense membership, er, emb including a ride on a steam train, getting close to some se-m e-sen www.sense.org.uk/content/becom furry animals at the farm, a trip out bowling and visiting a email mysense@sense.org.uk or call 0300 330 9256 stately home. In the evenings, the group enjoyed the hotel entertainments including tactile dominoes, bingo and dancing!

Here’s what they had to say:

I

Save the date!

mySense 2015: Saturday 7 November 2015, Birmingham The annual mySense event is a fantastic opportunity for people to share experiences and information – and a great chance to socialise. The theme of the 2015 conference is ‘friendship’.

Over the summer, information will be made available to you on our webpage www.sense.org.uk/ content/mysense-annual-event so please check back to see details of how to book your place and the programme.

2012

“Everybody got on so well – such a happy holiday” “We did a lot, we ate a lot, we laughed a lot” “I found it to be a great experience and a new challenge for me” Volunteer “The biggest impact the week had on me was feeling I had been involved in something very special” Volunteer

If you’d like to find out more about our Holiday Plus breaks for older deafblind people please email holidays@sense. org.uk, phone 0300 330 9250 or text 0300 330 9252

Peggy Freeman MBE, one of the parents who co-founded The Rubella Group in 1955, dies aged 94.

40 Talking Sense Summer 2015

Membership Matters

Strong roots, strong branches Oliver Walder from the Kent Branch describes the National Branches Meeting which took place in May. Sense branches are about friendship; supporting one another, sharing successes and showing that together our voice is stronger.

S

ense branches are about friendship; supporting one another, sharing successes and showing that together our voice is stronger. The overarching purpose of the branches is to establish a support network for families in the local area, which empowers us to negotiate with local authorities for our rights, including our children, and to raise funds and run local events.

As Sense has developed so have we, and there are now about a dozen branches. So it is fitting that, in Sense’s 60th anniversary year, we met up to look back on how far we have come since establishing the first branch in the 80s.

The meeting gives us time to reflect on how the demographics and objectives of the branches have developed. We now broadly represent three different groups of people: the elderly acquired deafblindness groups, branches with young families, and established branches with older children.

We each operate in different ways: the Cornwall branch has a close relationship with the GOT (Get Out There) group that gives young people with sight and/ or hearing loss and additional needs the chance to have fun like other teenagers.

Meanwhile the Leicester group runs as more of a social club, and the other branches plan annual family events and barbeques to appeal to current and potential members.

The range of conditions of deafblindness within a branch is always very diverse – which means that members come to understand and appreciate the varying stresses for each person – and this helps to build our bond of support.

At the meeting, Dominique Muller, Sense’s Trusts Manager, used a practical demonstration to show us how to identify and approach a trust when seeking funding. This was an eye opening and practical way to learn. We also discussed our branch voting rules, Sense’s progress in the last year, and how to connect Sense members with the branches in order to increase our membership and volunteers.

At these meetings, we mostly spend our time exchanging news and discussing the specific matters that affect us, our families and our branches and so we have a tough time sticking to the agenda! This means that when it is time to wrap up, we are still chattering outside – and this meeting was no different!

The 2012 Summer Olympics are held in London.

2012

Summer 2015 Talking Sense 41

Membership Matters

What stays in my mind is the interest, support and respect shown towards Usher people.

2013

In the last issue of Talking Sense, Emma Boswell, National Usher Coordinator and Chair of the Usher Network, described the stimulating ‘Life, Love and Laughter’ conference that took place in Belfast in November 2014.

To give it its full name this was the Usher Pre-conference meeting at the Acquired Deafblind Network (ADbN) conference.

Sounds posh – but what was it like for people affected by Usher who were attending a conference like this for the first time – and what did they get out of it? Ann Copson and parent Chloe gave Emma their impressions:

Supporting deafblind people to participate in arts and wellbeing activities becomes a priority for Sense – with a myriad of stimulating activities taking place across the country.

42 Talking Sense Summer 2015

Membership Matters Ann Copson

W

here to begin? I had never been to a Sense conference before and hadn’t even had much involvement with Sense.

But my interest was fired by Megan Mann, a Sense worker.

She asked if I would agree to be included in her short video called ‘Usher: an emotional journey’ to be presented at the Usher Preconference.

My interest was awakened and I obtained a grant from the Chris Chapman Fund to enable me to attend.

Then followed two exhausting but fascinating days of presentations, discussions and encounters with people from different parts of the world who all had an interest in and experience of Usher.

Presentations that stood out for me were Nadja Hoegner talking about humour in people with Usher: her research shows that apparently Usher folk don’t laugh as much as others – extraordinary!

Megan’s video presentation (to which I contributed) gratifyingly provoked much reaction and discussion.

Mark Dunning and his daughter Bella of the Usher Coalition in the United States gave us a transatlantic perspective.

Professors Andrew Webster and Maria Bitner-Glindzizc updated us on current medical thinking and research, and willingly gave us a valuable opportunity to get answers to our questions about Usher.

More than anything else though,

what stays in my mind is the interest, support and respect shown towards Usher people. Speaking as someone with Usher, I was conscious that there was a wish to understand and address the challenges we face. At the same time there was a recognition that people with Usher are not merely ‘the sum total of their eyes and ears’, but like anyone else, have a life to lead and a story to tell.

Did the Usher pre-conference meet my expectations? Definitely.

I enjoyed meeting different people from different countries and feeling part of a global network. Would I do it again? Absolutely!

Chloe – a parent

I

have a daughter aged five who has Usher syndrome (type 1B), and attended the Usher Network Pre-conference for the first time.

I was keen build my knowledge of the things we could and should be doing as a family to support our daughter. I found the Preconference helpful in building my network of contacts in the professional community, but perhaps the most useful aspect was that it gave me the opportunity to meet people from within the Usher community.

Spending time with them helped increase my awareness of the challenges faced by those with Usher syndrome, and I came away with a better sense of the kind of strategies we could consider putting in place for our daughter as she gets older.

As fully hearing/sighted parents it is hard for us to anticipate the changes

ahead and to envisage how these might affect her. Also, with a rare and potentially isolating condition like Usher syndrome, it isn’t often that you get the chance to meet another family or individual affected by the syndrome.

So this conference is one of the few chances to get the insight we were looking for by speaking to people who have trodden the path before her.

I was really inspired by the commitment of the professionals who presented their work at the Pre-conference, and how dedicated they are to understand and improve the lives of people affected by Usher syndrome. Hearing about their work has enabled me to think about future challenges more confidently, with the knowledge that there are professionals who are pioneering best practice and developing support systems that will have a real impact on people’s lives.

I think in order to get the most out of the conference it is useful to study the agenda and speaker list beforehand, to identify if there is anyone in particular you want to speak to.

Once at the event I think you need to be prepared to go up and get involved with anyone and everyone – it might feel daunting at first, especially if you have different communication methods, but the only way is to roll up your sleeves and get stuck in – there will be communication support workers who can help if you need. Listening to the stories around me really helped me to feel more confident about the path ahead for my daughter, and to get a better sense of the community which we are all a part of.

Researchers from Oregon Health & Science University in the United States describe the first creation of human embryonic stem cells by cloning.

2013

Summer 2015 Talking Sense 43

Membership Matters Get the legal lowdown

Mythbusters Continuing Healthcare (CHC) I haven’t heard of Continuing Healthcare – what is it?

You have a right to an assessment carried out by a specialist in deafblindness.

NHS Continuing Healthcare is the name given to a package of care which is arranged and funded solely by the NHS for individuals outside of hospital who have ongoing healthcare needs. You can receive Continuing Healthcare in any setting, including your own home or a care home. If you live in your own home and you qualify for Continuing Healthcare, the NHS will arrange and fund an appropriate care package to meet your assessed healthcare and social care needs.

Services provided by the NHS are free, whereas you may have to pay for services arranged by social services. Accordingly, the outcome of any decision as to who has overall responsibility for your care can have significant financial consequences.

Therefore, it can be a sensitive area.

I have Usher Syndrome – will I be eligible for NHS Continuing Healthcare?

To be eligible for NHS Continuing Healthcare you must have substantial and ongoing care needs. You must have been assessed as having a ‘primary health need’, which means that your main or primary need for care must relate to your health. So having Usher syndrome would not, in itself, make you eligible for Continuing Healthcare. You would need to

2014

demonstrate that your primary need is a healthcare need.

Eligibility for NHS Continuing Healthcare does not depend on: • A specific health condition, illness or diagnosis • Who provides the care • Where the care is provided.

If you want more information about qualifying for CHC funding please contact the information and advice service.

I think I may be eligible for CHC funding, but my social worker has not mentioned it. What can I do?

There are certain circumstances when CHC funding should be considered, including when you are having an assessment of your health and social care needs. The first step is to have an assessment with a health or social care professional using a screening tool called the Checklist Tool.

The Checklist Tool is usually completed when a nurse, doctor, other qualified healthcare professional or social worker is assessing or reviewing your health or social care needs. If you think you may be eligible then make sure you request this initial screening. If this screening suggests that you may be eligible for CHC funding, a full up-to-date assessment of your needs will be arranged, using a tool called the Decision Support Tool.

Social prescribing groups, where isolated disabled people come together to try new activities and find support, are developed by Sense.

44 Talking Sense Summer 2015

Membership Matters I am deafblind. I have been told that because I will probably qualify for CHC funding and I am going to have a CHC assessment, I don’t need/won’t qualify for a deafblind specialist assessment. Is this right?

I have been told that I qualify for CHC funding. The CCG have drawn up a care and support plan, but the plan does not meet my needs associated with my deafblindness.

What can I do?

No. If you are deafblind then you have a right to an assessment carried out by a specialist in deafblindness. It is really important that you get a specialist assessment because without one your needs associated with your deafblindness may not be identified. If you are still refused a deafblind specialist assessment after requesting one please contact the Legal Support Service at Sense for advice.

If you are deafblind then you should have received an assessment from a specialist in deafblindness. If your specialist assessment identified needs which are not met by the care and support plan which has been drawn up by the CCG then the CCG may be acting unlawfully.

The CCG should involve a specialist in deafblindness when drawing up the care and support plan. If they refuse to involve a specialist and you think that the plan does not properly meet your needs then please contact the Legal Support Service for advice.

What happens after the CHC assessment?

You can receive continuing healthcare in any setting, including your own home.

The multi-disciplinary team will make a recommendation to the Clinical Commissioning Group (CCG) about your eligibility for NHS Continuing Healthcare.

If you qualify for CHC funding then the CCG is responsible for arranging your care and support plan. If you do not qualify for CHC funding then you may still qualify for care and support provided by the local authority. If you are not eligible for NHS Continuing Healthcare but you still have healthcare needs, the NHS may still pay for part of the support that you need. This is sometimes called a joint package of care.

I have been told that my Education Health and Care (EHC) Plan cannot be issued because Health has not yet decided whether I qualify for CHC funding. Is this right?

If the local authority agrees that an EHC plan is necessary, then the EHC Plan must be issued within 20 weeks of the original request for an EHC needs assessment, unless exceptional circumstances apply. If the issue of your EHC Plan is delayed because the CCG is not ready, please contact the Legal Support Service for advice.

The Rosetta spacecraft’s Philae probe successfully lands on Comet 67P, the first time in history that a spacecraft has landed on such an object.

2014

Summer2015 Talking Sense 45

Membership Matters

Lando’s world

By our columnist Lando Hilton

Finding real treasures in Turkey I’d been wondering how much the holiday would be affected by my eyesight limitations. Then, on the flight to Istanbul, the answer presented itself. While reading a book about neuroscience, I came across James Holman – the nineteenth-century ‘Blind Traveller’.

Holman had no vision whatsoever, yet managed more than 400,000 kilometres of solo travel, which he wrote about extensively. He also became the first blind person to circumnavigate the globe. His trick was to use echolocation.

“What’s the point in travelling if you can’t see?” he was asked, no doubt by someone stupid.

I pondered this question throughout my time in Turkey. On each excursion, I tried to assess how much my (remaining) vision was being used compared to my other four senses.

Some experiences didn’t need eyesight at all. It was my tastebuds that relished the Turkish coffee, the baklava, the shish kebabs. It was my sense of smell that enjoyed the

2015

sweet aromas of the Spice Bazaar, and the not-so-sweet aroma of feet at the Blue Mosque, where visitors were required to remove their shoes.

There were occasions when eyesight was indeed beneficial, but it wasn’t the ONLY sense being engaged. Take Troy, for instance, the great-city-turnedarchaeological-site.

Here, visual input alone wouldn’t have given me much – just the image of crumbling walls and fallen columns. The most important thing about Troy was the history behind it. To the eye, a heap of rubble is just a heap of rubble. It’s the mind that appreciates that this pile of stones might once have been King Priam’s palace, home to Helen, Paris, et al. (It’s even more meaningful if you’ve suffered through Homer’s Iliad, as I have.)

Elsewhere, at the Topkapi Palace, I declined to visit the treasure chamber, even though I could have seen its contents. The weather was too hot to stand in that great long queue – and what would I get out of viewing the treasures? The sight of jewels would be aesthetically pleasing for a few seconds, and that would be it. The real ‘treasures’ I’d acquired from this palace were the stories we were told about the sultans, their concubines, and the guarding eunuchs.

I’m not saying my poor eyesight didn’t make things difficult. I had to be ultra-careful not to trip over, especially at historic sites where the ground was uneven. If dinner was from a buffet, my dad had to get my food for me, as I can’t carry loaded plates through a crowd without a Fall of Troy-scale disaster.

Still, as James Holman found all those years ago, travel is a multi-sensory experience and I’d encourage everyone to go, sighted or not.

Next stop: Guernsey!

After three years of lobbying by Sense in partnership with deafblind people and families, the Social Care Act becomes law – and includes recognition of the particular needs of deafblind people.

46 Talking Sense Summer 2015

Membership Matters

Sense Awards 2015!

Nominations for the Sense Awards 2015 are now open!

The Sense Awards celebrate the achievements of deafblind people and those who support them.

Do you know someone who’s done something amazing? Let’s recognise and celebrate the achievements of 2015!

You can nominate an individual, project, or team in the following categories:

Deafblind Person of the Year Is a deafblind person you know excelling in a particular area, are they overcoming obstacles, or perhaps have seen successes in campaigning, fundraising, awareness-raising, or volunteering?

Young Deafblind Person of the Year Do you know a deafblind person under the age of 25 who has been particularly creative, overcome adversity with courage, or made a positive impact in their community, family or friends?

Carer of the Year Do you know a person with caring responsibilities or a family member who is remarkable? Have they supported you or someone you know to do something new or exciting?

Blogger of the Year Blogging or sharing your story and your thoughts is a way to connect with, comfort, and inspire others. Do you know someone who has made a difference by sharing their story – whatever the medium?

Change Maker of the Year Are you in touch with professionals or organisations who have spearheaded good practice, been innovative in their approach or perhaps supported positive change for a deafblind person or family member?

Powerful Partnership of the Year An opportunity to celebrate organisations that have supported our work through fundraising or gifts in kind, who have worked with us to promote a cause or strengthened the support Sense has been able to offer deafblind people.

Good Service Award What organisations do you know that have been innovative in their work to accommodate deafblind people? Perhaps they have changed the way they work to enable a deafblind person to access facilities, provided training for staff, or even modified a building.

Sense Award for Creativity Do you know someone whose creativity and commitment has produced something wonderful?

Perhaps they have taken centre stage, produced a work of art, or been innovative in their thinking?

Sense Arts Partnership Award The benefits of being creative and expressing yourself can be monumental. Do you know an organisation that has worked creatively alongside Sense for the benefit of those we support?

To submit your nomination(s) please visit the Sense website at www.sense.org.uk/awards Nominations close in October.

If you have any questions or would like to make your nomination by post, please contact the Conference and Events team at awards@sense. org.uk or 020 7014 9328 (voice and text) or you can write to us at Sense Awards, 101 Pentonville Road, London N1 9LG.

Sense celebrates its 60th birthday!!

2015

Summer 2015 Talking Sense 47

Beautiful golf course, great company – brilliant result!

E

ngland football legends Ray Clemence and Luther Blissett joined staff from NEC Display Solutions in July to enjoy a day of golf and dining at Buckinghamshire Golf Club – and raise vital funds for Sense International.

This is the second year that staff from NEC Display Solutions have participated in the golf day, raising £21,000 for Sense International’s ‘Finding Grace’campaign. The appeal aims to raise money for a pioneering programme to screen 300,000 infants in Kenya and Uganda for deafblindness. Between 10 June and 10 September 2015 the UK government will match donations to the campaign pound-for-pound.

Sense, and Sense International 101 Pentonville Road London N1 9LG tel: 0300 330 9250 fax: 0300 330 9251 email: info@sense.org.uk web: www.sense.org.uk Chief Executive: Gill Morbey

NEC Display Solutions is a manufacturer of computer monitors and large-screen public-information displays. Simon Jackson, Vice President at NEC Display Solutions, said: “I am touched by how staff at NEC have taken the Sense charity to heart and are challenging themselves personally to raise funds for this great cause.”

Ray Clemence takes a swing

To find out how you can offer your support to Sense’s Finding Grace appeal please visit: www.senseinternational.org.uk/ findinggrace

Luther Blissett with Simon Jackson from NEC

Sense Cymru Tˆy Penderyn 26 High Street Merthyr Tydfil CF47 8DP Ffôn/tel: 0300 330 9280 Ffacs/fax: 0300 330 9281 Testun/text: 0300 330 9282 email: cymruenquiries@ sense.org.uk

Sense Northern Ireland Sense Family Centre The Manor House 51 Mallusk Road Mallusk County Antrim BT37 9AA tel/text: 028 9083 3430 fax: 028 9084 4232 email: nienquiries@ sense.org.uk

Sense Scotland 43 Middlesex Street Kinning Park Glasgow G41 1EE tel: 0141 429 0294 fax: 0141 429 0295 textphone: 0141 418 7170 email: info@ sensescotland.org.uk web: www.sensescotland.org.uk Chief Executive: Andy Kerr

Registered charity number 289868