our patron Deafblindness is one of the most isolating disabilities that anyone can experience. Learning to communicate, to move around safely and to live as independently as possible – all these things are hugely challenging for someone with little or no sight and hearing. It can also be extremely isolating for families and carers who are supporting a deafblind child or adult. All too often the support available is very limited and there may be few opportunities to meet other families who are in the same position. This is why the work of Sense – offering specialist advice and services to deafblind people, bringing families together and campaigning for change – is so important. Sense has over 50 years’ experience working with deafblind people and is a shining example of what can be achieved when people work together towards a common goal. This year I have been privileged to see this pioneering spirit in action once again. In January for example, I met Johanne, Richard and Matthew who are the proud residents of a new Sense house in Malvern; and in June I was delighted to officially open Northern Ireland’s only specialist nursery for deafblind children. These are just two examples of how Sense – with the help of so many in the community – makes a huge difference to the lives of deafblind people and their families. Thank you for your continued support.
HRH The Princess Royal
Sense
– the power to break down isolation
D
eafblind people face immense practical difficulties in their lives. Simple everyday things – like having a conversation, cooking a meal or travelling to the local shop – can be a huge challenge for people with little or no sight and hearing. Perhaps the most daunting aspect of deafblindness, however, is the personal isolation this can bring. Without specialist help deafblind children may withdraw into themselves, leaving parents feeling exhausted and cut-off. And too many older deafblind people still live lonely and isolated lives. This is why Sense’s work is so important. One of our key goals – ever since a group of families with rubella-damaged children met up over 50 years ago – is to bring people together, to develop a sense of belonging, and to break down that feeling of isolation and powerlessness. Today Sense has an international reputation for its work. It provides specialist services that are tailored to meet the needs of each deafblind person. It gives families the backing they need and it empowers deafblind people to live the lives they choose and to campaign on their own behalf.
a powerful impact I
n this review you will find stories of incredible achievement by deafblind people. Many of the deafblind people we work with have overcome formidable challenges to take their place in the world and choose how they wish to live. At Sense we feel privileged to support deafblind people, and to give them the backing they require to control their own destinies. You can read about some of the many schemes we have run this year to enable this to happen. Some involve people supporting each other, or families working together to share ideas and solutions. You will also read of the powerful contribution of Sense staff. Through experience, imagination, and determination, they continue to move our work forward. This endeavour has brought impressive results – new services, new initiatives and new knowledge. Sense now has over 2,000 staff working to support deafblind people and their families, and this represents a unique body of knowledge that is available to help improve the lives of deafblind people.
Tony Best, Chief Executive
We are also very conscious that much of this work is only possible because of the kindness and commitment of the people who support our work through donations. This is essential for our work to continue and we hope the stories of success in this review will help to show this generosity has been put to good use. We really are most grateful for your support. The review shows how deafblind people, staff and volunteers working together is such a potent combination. They have the power to change lives – and that is the impact you will read about in this Review.
Katia Herbst, Chairman
contents The power to change
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please contact us if
The power to choose
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Deafblind power
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A power of good
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50 powerful years
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All power to you
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• you would like this review in another format such as tape or Braille • you would like this translated into your first language • you would like to find out more about deafblindness or have a press enquiry.
Finance
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Sense services
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Call the Communications Team – 0845 127 0060 sense annual review 2006
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“
we’ve got to really trust people to let them look after Josh Shane, Joshua’s dad
”
made possible by… It is thanks to the generous support of different trusts, companies and individual donors that Sense can offer specialist intervention for deafblind children.
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sense annual review 2006
W
hen Joshua arrives at the Saturday club with Moira, his intervenor, he seems tense and tired. He hasn’t had a good night’s sleep and bites his wrist band with frustration. But tiredness isn’t the only challenge he faces. Because of a chromatic disorder Joshua was born with almost no sight, and finds it very difficult to make sense of the sounds around him. He can also only take in food through a tube into his stomach and spends much of his time restricted to his wheelchair. With these daunting problems it is vital that he receives as much care and stimulation as possible if he is not to withdraw into his own world. Moira gently strokes his hand, traces a feather across his cheek and then blows bubbles softly onto his arm – which is one of his favourite experiences. And gradually, slowly, he starts to relax and then breaks into a smile. “Good boy,” says Moira, “Well done!” “We’ve got to really trust people to let them look after Josh,” says Shane his dad. “Moira knows Joshua so well, she understands his moods and what will work for him. It’s the only service that meets Joshua’s needs. Sense is excellent.”
the power to
change Children who are born with vision and hearing impairments – and often other disabilities to cope with – face a tough start to life. Learning about the world around them, finding a way to communicate, and learning to trust those people around can be immensely difficult. It is vital that these children, and their families, get help as early as possible.
impacts
Sense’s Family Education and Advice Service offered vital guidance, information and support to 356 people last year. Ten young deafblind people came together at a weekend event to discuss the challenges they face. “It made me feel equal” said one participant.
Sense specialists have the expertise to provide early assessments of a child’s needs and to develop individual programmes that will help them to reach their potential. They also promote effective collaboration between all the professionals involved in a deafblind child’s care, and offer much-needed support to families.
child or adult can be extremely demanding, leaving many families feeling isolated and exhausted. Sense provides a wide range of activities – including our membership scheme, 14 local branches, family network, Saturday clubs and family days – which bring families together. These offer families a crucial opportunity to share information and experiences, to have a voice and to realise that they are not alone in the challenges they face.
Families are under enormous pressure. Caring for a deafblind sense annual review 2006
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the power to
choose
Sense believes strongly that each individual should be able to choose the help and support that is right for them. Our specialist services enable deafblind people to live as independently as possible, offering a range of housing, educational, employment and leisure opportunities that are built around each individual’s needs and preferences. Sense’s specialist staff work closely in partnership with each individual, often getting to know them extremely well. Over a period of time they learn about the things that matter to the individual – how they prefer to communicate, how they like to spend their time, where they like to go on holiday and so on. Some deafblind people will be able to express these wishes very clearly, and have strong ideas
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sense annual review 2006
about what they would like to do. With other deafblind people, staff will need to watch sensitively and patiently to understand how the individual prefers to live. Wherever possible, Sense aims to meet the needs and expectations of the deafblind people we serve – and to provide high-quality, tailored services and support to make their dreams a reality.
impacts
We enabled 315 deafblind people to live more independent lives in the 63 Sense-run houses and flats. We also provided 11 supported living services. Over 900 professionals and others concerned with deafblindness received training and consultancy services from us.
“
do you want an apple, Twist? I think he does Jo
”
made possible by… 26 different trusts donated a total £155,078 to enable Sense to set up the new residential service at Tanglewood.
W
e’re at the river now Jo,” explains Sophie as she leads Jo’s horse forward carefully. Jo is blind and today she is riding her favourite horse, Whinstone. She goes riding every week and it is the activity she looks forward to most. Jo lives at Tanglewood, Sense’s new supported residential home in Malvern – and when she moved there she was introduced to all sorts of different activities. “At the beginning we tried a range of things from swimming to cooking,” says Robbie, her Education Support Worker. “Then over time Jo told us what she liked doing and also what she didn’t. The team then developed a personal activity plan that she approved.” “It’s done a lot for Jo’s self esteem because when she first came to Tanglewood she was reluctant to try things like art and cooking. Gradually her confidence has grown and now she’s more independent and having a go at lots of new things.” Before leaving the stables, Jo gives Whinstone an apple and stops to give another horse, Twist, a treat as well. While stroking his nose she asks: “Do you want an apple, Twist? I think he does. Well then, I’ll see you all next week.”
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“
it’s important to stand up and have your say Desmond
”
made possible by… The See Me Hear Me campaign has been funded by £175,874 from the Big Lottery Fund, The Rank Foundation and the Persula Foundation.
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sense annual review 2006
I
don’t understand why the lighting at tube stations is all different!” signs Desmond. “Why is the lighting on the Charing Cross platforms good but the lighting at Piccadilly and Kings Cross really bad?” Then he leans forward intently as his interpreter relays the response from the Transport for London representative. Good news – all the London tube stations will be upgraded by 2012. Desmond is a See Me Hear Me campaigner who is meeting with representatives from five separate UK transport organisations. It’s an important opportunity for Desmond who is profoundly deaf, has tunnel vision and problems adjusting to light. Also, he’s moving back to London soon to take up a new job and will be travelling by bus and train every day. A seasoned traveller, he regularly uses overland services and says that usually lots of planning is required – especially when changing trains at large stations with several platforms such as Leeds. “Transport companies need to understand more about their deafblind passengers”, he says “I think it’s important to stand up and have your say and not just be a participant. That’s why I went to the transport event.”
deafblind
the powerr to
Quite apart from the tough personal challenges that deafblindness brings, many deafblind people find that society is rarely organised so they can fully participate in it. Experience shows however, that it is the involvement of deafblind people themselves that can really make changes happen.
impacts
As a result of See Me Hear Me, one deafblind campaigner persuaded her local authority to install three pedestrian crossings and a new pavement. As a result of a British Sign Language awareness project (part of a UK Council on Deafness consortium) ten deaf visually-impaired people are now able to provide training on the sign language used by deafblind people.
deafblind people to participate in debates at a local council level. “Too often, we have learned to feel helpless,” says Liz Ball who is the Project’s Co-ordinator, “We must put this behind us and learn to help others and ourselves. We have to be a force for change.”
See Me Hear Me is an innovative project to empower deafblind people to campaign, take action and bring about positive changes for themselves and others. The three-year initiative is providing deafblind people with training, advice and support in campaigning. A network of deafblind community advocates is being created who can effectively campaign on whatever issues interest them – such as making transport services accessible, or enabling sense annual review 2006
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a power of
good
As people are living longer, many more elderly people are having to cope with combined sight and hearing difficulties. Having a dual-sensory impairment makes it much harder for many older people to live independently and to enjoy the interests and social activities they used to. Many feel isolated and unwanted. Sense provides specialist support and information to enable older people to continue to live as independently as possible. Sense outreach workers are able to carry out specialist assessments of an older person’s needs, and to organise appropriate services and support for them. Communicator-guides for example, provide communication support, offer practical help at home, and enable a deafblind
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sense annual review 2006
person to get out and about – perhaps to go shopping or to visit the doctor’s. This year we organised two Holiday Plus breaks for ten older deafblind people – setting up an additional holiday when demand exceeded our initial expectations. These give older deafblind people – many of whom may be fairly isolated at home – the chance to socialise, to have fun and to try out all sorts of different activities.
impacts
The second of Sense’s 50th Anniversary lectures at the Royal Institution focused on the growing population of older people with dualsensory impairments. Our holiday team organised 31 holidays for 139 people, supported by over 200 volunteers and leaders.
“
I’m frustrated, with no one to talk to. But I can talk to you John Rowley
made possible by… Our holiday programme is funded through generous support from trusts, companies and individuals.
”
J
ohn is a proud, independent and sociable man. Although deaf and with very little sight, he worked as a machine operator for many years and still does all his own cleaning, washing and cooking. Recently though, his life has become much more restricted and he often feels frustrated and lonely. “All my friends are dead,” he says. “I’ve got no communication and I can’t go out alone”. What helps John to retain his independence, his self-respect and contact with the wider world is his Sense communicator-guide. Linda – who signs fluently – spends four hours with him each week, helping him with paperwork and post, and taking him shopping so he can choose exactly what he wants. “We have a laugh,” says John, “Linda takes me to the pub, shopping, for haircuts – it’s so nice to get out.” Recently John also went on a Sense holiday to Brighton. “It was great!” he says. “There were lots of other people who could sign with me and I enjoyed everything – the dancing, parties, going to the pub, playing the electric harp and bowling – holidays keep me going for a long time.”
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50 powerful years Sense celebrated its 50th anniversary last year with ‘Deafblind Horizons’ – a series of forward-looking and stimulating activities. These included regional events that celebrated the creativity of deafblind people, the launch of a new project to promote the use of technology for deafblind people, and hosting three lectures at the Royal Institution that explored the future for deafblind people. Sense also supported a wide range of events which have been enjoyed by hundreds of individuals this year. There have been so many family days, branch events, get-togethers, day clubs, meetings and fundraising pushes that it really is impossible to describe them all. The main thing is that as a result of all these activities, new friendships have been formed and many individuals have been helped to deal with the difficult challenges they face in their lives. They have been able to discuss them with their peers, to listen to other peoples’ experiences, to learn – and often have a lot of fun in the process.
impacts
A hugely successful 50th anniversary family conference in June 2005 brought 229 people together for discussion, support and celebration.
We have increased Sense membership by 16% – and the numbers of young members rose by 50%.
the power of technology Assistive Technology – everything from computers to colourcontrasted cutlery – has the potential to be enormously useful to deafblind people. And yet Sense research in 2005 showed that many deafblind people still have problems using it. Sense’s Technology Advisory Project provides the latest information to deafblind people about the technology they need, and is working with manufacturers to encourage them to develop products that are accessible to all.
impacts
The new technology information on Sense’s website received over 800 visitors each month.
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made possible by… Sense’s Technology Advisory Project is supported by the Department of Health.
campaign power Many of the barriers that deafblind people face are not caused by their disability but by the way that our society is organised. Public transport that is inaccessible, and products designed so that people with sensory impairments cannot use them – these are just two examples. Sense campaigns vigorously for a better deal for deafblind people. It pushes for the rights, services and adjustments that deafblind people need to live ordinary, independent, fulfilled lives. And increasingly it is empowering deafblind people to carry out this campaigning work for themselves – supporting them to lobby their MPs, local authorities and service providers to take their needs into account.
impacts
Sense’s Information Team received over 1,500 enquiries from callers asking about a wide range of topics, 58% more than last year. This led to 75 deafblind people getting a service from us for the first time. The National Collaborative Usher Study is making excellent progress towards adding substantially to our knowledge of the genetic make-up of Usher syndrome.
impacts
Thanks to Sense campaigning there has been an increase in the numbers of deafblind adults identified by local authorities – from 24 per 100,000 population in 2002 to 45 per 100,000 population in 2005.
requirement for deafblind people to be given information in the most appropriate way. Sense continues to promote good practice including through our website which has a section specifically for social services. This had 3,362 visits this year, 19% more than last year.
After campaigning by Sense and others, the Mental Capacity Act included the
information is power One of Sense’s priorities is to improve our specialist knowledge and skills, as well promoting a wider understanding of deafblindness. Our information team, new specialist library on deafblindness, research team, website and media coverage are all dedicated to providing the information that our different audiences require.
made possible by… The National Collaborative Usher Study has been funded over three years by £467,000 from The Big Lottery. sense annual review 2006
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all power to you 2005 was a massive year for Sense – the year we celebrated our 50th anniversary. Ever since Sense began, the backing of individuals, companies and trusts has been absolutely vital to our work. In fact without your support, Sense simply would not be able to offer services to deafblind people. We would like to say a huge thank you for your continued generosity and commitment.
Other Sense heroes included Alan Greatbatch who cycled an eye watering 42,000 miles across the USA to raise £10,000 (3), and John Crabtree, who undertook his fifth overseas trek through the windswept valleys of Peru – raising £131,698 and bringing the total amount of money he has raised for Sense to a whopping £2 million.
1
the future’s bright flying high Once again Sense’s supporters have been setting their sights high – puffing, pedalling, running and trekking to raise money for deafblind people. As part of our 50th birthday celebrations Sense released over 22,000 balloons in a Great Jubilee Balloon Race with the furthest landing in Portugal and raising £18,500 (1).
2
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The Flora London Marathon was an even greater success this year with over 400 runners dashing through the streets of London to raise over £600,000 (2). Among those running were the Pettifer Group who in celebration of their 50th year had 50 runners and Nick Rapley who ran his 10th marathon for Sense.
3 sense annual review 2006
In 2005 Sense was selected as the charity partner of Orange. This new partnership has so far generated over £8,000 through the fundraising activities of Orange’s generous employees – everything from cycle rides to book sales. Another first for Sense was the ICAP Charity Day where an industrious group of stockbrokers got together and raised £110,000 in one day of frantic trading (4).
4
with a little help from our friends The individuals who donate regularly to Sense are so important to us. We’d like to thank everyone who responded so generously to Sense appeals during the year, and all those who have made a commitment to give a regular gift each month. All together more than £1.76m was donated to Sense’s work for deafblind people by individual givers.
a special thanks to: • The Department of Health which is providing £61,600 over three years for our Technology Advisory Project to enable deafblind people to use the latest technology (5). • The Bridge House Trust have donated £105,000 to fund a new worker to support older deafblind people in London. • The Peter Harrison Foundation which donated £13,500 towards equipping our home for deafblind people in Ramsgate, and the Garfield Weston Foundation who gave £15,000 towards the renovation works at our Anne Wall Centre in Barnet – opened by our Patron (6).
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a lasting legacy During the year we were touched to hear from supporters who have taken the decision to remember Sense with a legacy. Legacies provide a quarter of Sense’s charitable income and help us to plan a brighter future for deafblind people (8).
do I get “what out of it? It’s hard to articulate. It’s been a huge part of my life a Sense supporter
6
”
when the selling gets tough… 2005/06 was a challenging year for Sense Trading. In fact it’s been a tough year for all charity retailers with only the innovative and go-getting retail chains doing well. To meet this challenge, Sense Trading has re-structured and staff and volunteers have responded brilliantly to this. There have also been some great successes in our niche areas of business – such as eBay and Book and Music. So, a difficult year – but one that has helped us make important changes to secure a strong profitable future for Sense’s shops (7).
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finance Thanks to the huge achievements of our staff and volunteers, and the generosity of our supporters, we increased our annual turnover by almost 8% to £48m. £33.5m of this was from fees and allowances which enabled us to provide residential and day care services in our homes and resource centres located throughout England, Wales and Northern Ireland. We achieved almost £5.4m from fundraising activities, an increase of over £330k on the previous year, and we increased our shop sales by £138k to reach over £6.9m. We spent £37.7m on charitable services, an increase of £3.5m on the previous year, and we have put aside a further £1.9m to pay for services we are planning in future years. Our fundraising strategies are delivering good results with the increase in fundraising income of over £330k, whilst the cost of raising it actually dropped by over £200k.
a word from our Trustees This information represents a brief summary of the financial performance for the Sense family (excluding Sense Scotland and Sense International) for the year ended 31 March 2006. The summary may not contain sufficient information to allow for a full understanding of the financial affairs of the organisation. For further information the fully consolidated Report and Accounts should be consulted. They are available free on request from Sense, 11–13 Clifton Terrace, Finsbury Park, London, N4 3SR. Telephone 0845 127 0060 (voice), 0845 127 0062 (text). The Report and Accounts have been independently audited by PricewaterhouseCoopers LLP and are unqualified. They were approved by the Trustees on 12 July 2006.
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Key people Patron: Her Royal Highness The Princess Royal Chairman: Dr Katia Herbst Vice Chairman: Dave Pearson Chief Executive: Dr Tony Best Director, Community Support and Information: Malcolm Matthews Director of Children and Adult Services: Ges Roulstone Regional Director: North: Bob Snow Regional Director: South East: Alan Avis Regional Director: West: Peter Cheer Regional Director: East: Kate Lockett Director of Finance: Derek Pernak Director of Fundraising: Jane Arnell Director of Trading: Adrian Barker Director of Human Resources: Pete McCollin
income £000 Fees from Sense services
33,550
Shops
6,966
Fundraising
5,396
Grants
1,248
Other
902
Total
48,062
expenditure £000 Sense services
37,725
Shops
6,402
Fundraising
1,954
Put aside for future use
1,981
Total
48,062
a special thanks to our corporate and trust supporters The Adnams Charity The Albert Hunt Trust The Andrew Mitchell Christian Charitable Trust Baron Davenport’s Charity Trust BBC Children In Need Appeal BHP Billiton Plc BUPA The Blair Foundation Carillion Plc The Casey Trust CHK Charities Limited The Childwick Trust Clifford Chance The Clore Duffield Foundation The Clothworkers’ Foundation The Confederation of British Industry The Connie and Albert Taylor Charitable Trust The Constance Green Foundation Conygar Investment Company plc Cooper Gay Charitable Trust The Cotton Trust The Elizabeth & Prince Zaiger Trust EnviroStream International Ltd Ernst & Young LLP The Eveson Charitable Trust The Fidelity UK Foundation First Great Western Four Acre Trust The Garfield Weston Foundation The Geoff and Fiona Squire Foundation The Harborne Parish Lands Charity Help a London Child The Homelands Charitable Trust IAB ICAP Plc The Inman Charity ITV London
John Crabtree The John Pinto Foundation Johnson Matthey Plc Land Securities Plc The Lennox & Wyfold Foundation The Lillie Johnson Charitable Trust The Link Asset and Securities Co. Ltd The Lord’s Taverners The Marit & Hans Rausing Charitable Foundation Marsh Ltd The Merchant Taylors' Company Charities Fund Michael Cornish Charitable Trust The Millichope Foundation The Misses C M Pearson & MV Williams Charitable Trust Orange Plc The Orr Mackintosh Foundation The Patrick Frost Foundation The Patrick Trust The Peacock Charitable Trust The Percy Bilton Charity The Persula Foundation The Peter Harrison Foundation The Pettifer Group Pitney Bowes Inc. The Princess Anne’s Charities Quay Properties R G Hills Charitable Trust The Rank Foundation Royal Mail Group Rubicon Retail Ltd Scrivens Ltd SFIA Educational Trust The Tanner Trust The Thompson Fund The Violet Helen Dixon Charitable Trust Vision Charity The Wolfson Foundation Wragge & Co LLP
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Represents the number of houses by location
Sense services 18
sense annual review 2006
At Sense we take pride in offering high quality, flexible services, using skilled staff and a dedicated network of volunteers – tailoring the support we offer to the needs of each individual. All our services enable deafblind people to join in the life of their local communities and enjoy local, mainstream amenities. Our services extend across the UK, responding to local needs as much as possible.
housing and support for deafblind people A range of accommodation choices in the community offer individuals the support they need to live as independently as possible and in the way that they choose.
day services
where to find us
These individually-tailored programmes give deafblind people the chance to develop their skills and abilities.
supported employment projects We offer skills training and work experience, providing a springboard for job opportunities in the community.
Sense
communicator-guide schemes
0845 127 0060 0845 127 0061 0845 127 0062 info@sense.org.uk www.sense.org.uk
Practical help such as shopping, dealing with mail and an escort for trips outside the home enable older people to continue to live independently in their own homes.
outreach services Specialist workers visit deafblind people and their families across the country to help them to find the information, services and support they need. They also have an advocacy role.
Sense Scotland
branches
0141 429 0294 0141 429 0295 0141 418 7170 info@sensescotland.org.uk
This network brings parents and deafblind people together to learn from and support each other, to campaign for local services and have fun.
holidays – and where we went this year Sense holidays give deafblind people the chance to get away from it all, taste new experiences and have a lot of fun! They also give families a much-needed break from the often-demanding work of supporting a deafblind person.
Sense Northern Ireland 028 9083 3430 028 9084 4232 028 9083 3430 senseni@sense.org.uk
family education and advisory service We work with deafblind children and their families to offer vital early assessments and individual programmes to help children develop their full potential.
Sense Cymru
other services provided across the UK
029 2045 7641 029 2049 9644 029 2046 4125 enquiries@sensecymru.org.uk
support for people with Usher syndrome The Usher Resources Team, and outreach workers across the UK, provide vital support, information and advice to people with Usher and their families.
training and consultancy Our experienced professionals offer specialist assessments, advice and training on all aspects of working with deafblind and multi-sensory impaired people.
membership Membership offers people a sense of belonging, the chance to be more actively involved in our work, plus the opportunity to receive our magazine, Talking Sense. sense annual review 2006
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your support for Sense can make an enormous difference to a deafblind person and their family
helped me communicate with my “Sense child – it gave me a lifeline ” Parent
please accept my gift of £25
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towards Sense’s work with deafblind people.
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given me the tools and confidence “ittohas be able to fight for my rights ” Deafblind person
our lives around – previously “itourchanged son did not get the life he really deserved as a human being ” Parent
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enabled me to meet people with “Sense deafness and blindness who were like me
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and who communicated like me – from this I got an awakening, I was able to engage and overcome isolation Deafblind person
”
Please return to: Sense, Freepost WC4236, Wakefield, West Yorkshire WF1 1BR
Sense 11–13 Clifton Terrace Finsbury Park London N4 3SR
thank you for your support! Occasionally Sense benefits from exchanging supporter information with other charities. If you would prefer not to hear from them, please tick this box: *In order for Sense to reclaim the tax you have paid, you must have paid income or capital gains tax in the UK equal to the amount that will be claimed (currently 28p for each £1 you give)
Registered Charity Number: 289868 Company Limited by Guarantee. Registered in England and Wales. Company Number: 1825301 Patron: Her Royal Highness the Princess Royal
0845 127 0060 0845 127 0061 0845 127 0062 info@sense.org.uk www@sense.org.uk
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