Sense Review 2011 Highlights from a year of challenge and achievement Creative Times I am aware that 2011 was a tough time for many. Still, in reading our review you would hardly know the financial challenges existed. Deafblind people, staff, families and supporters have all gone the extra mile. We found creative ways to do things differently. Our generous supporters continue to give us time and money. Families organised some fantastic events and our staff worked hard to ensure that deafblind people continue to receive the best possible support we can give. There are many wonderful moments and it was brilliant to see the publication of ‘Our Journey’ in December 2011. The book, full of courageous family stories was a great reminder of the importance of Sense’s work. We had some fun with the CEO’s competition around the theme of bridges. There are definitely many talented people and artists amongst us. There were art exhibitions, drumathons and some fantastic creative expression was evident at the October members’ day. Our Review can only give you a flavour of our work. But I hope you enjoy reading about the creativity of the deafblind people we support, our talented staff and the supporters who help us make it all possible. Gill Morbey Chief Executive The right to play your part A new Sense report, Belonging and Participation, has highlighted how deafblind people want to take part in society – and what is stopping them. Everyone has the right to be a valued citizen and to choose, as far as possible, how they want to live. But this is often tough for deafblind people. Quite apart from the challenges of living with a dual-sensory loss, many people face societal barriers in their lives – including a lack of understanding and poor support services. In 2011 - as part of a Sense-wide drive to promote greater involvement – we consulted 150 deafblind people and their families to find out how they would like to participate more fully in society. Our Belonging and Participation report describes the activities that help deafblind people to feel that they belong - including going shopping, getting out and about, and seeing their family. It also highlights the barriers that many experience, including a lack of communication support and poor transport. These findings, and possible ways ahead, were discussed by a group of over 100 deafblind people, families and staff at our Belonging and Participation Day in October. The day brought different people together in a way that was inclusive, stimulating and fun. ‘We all came together like one complete unit – it was brilliant,’ said Annette Bodsworth who has Usher syndrome. `I felt as if I participated, and I felt like I belonged – I felt safe and at ease with people, and I haven’t felt like that for a long, long time.’ Fabulous Family Days All across the country in 2011, Sense’s Family Days welcomed children and young people with multi-sensory impairments, their families and friends. Whole days of fun were on offer, with volunteers or support workers on hand to ensure that parents could relax, take a break and link up with other families. In May for example, deafblind youngsters and their siblings had a great time at Cattle Country adventure playground in Gloucester – meeting the farm animals, going on rides, being serenaded by a brass band and trying out their photography skills. Sense Family Days are a key part of Sense’s Children’s Specialist Services – and as part of our core offer, we aim to ensure that all families have the chance to attend at least one event each year. 21st Century CHARGE In March, Sense held a major international conference about CHARGE syndrome. This provided an incredible opportunity for people with CHARGE, their families, practitioners and some of the top professionals in the field to come together to share experiences, support each other and hear about the latest research and information. CHARGE syndrome is an extremely challenging condition that affects people from birth that brings a range of physical difficulties, including vision and hearing impairments. While the children and their siblings enjoyed two days of fun at our leisure club – thanks to an army of volunteers – their families packed out talks and workshops. Together with the professionals they shared and developed our knowledge of this complex and challenging disability. This was a conference with a real buzz, where people came together and shared – often emotionally – the challenges they face, and the excitement at being part of a community which is beginning to understand what CHARGE means. A new deal for children and families Sense’s Children's Specialist Services introduced a new core offer for children with multi-sensory impairments in 2011. Sense has wide experience of working with children with multi-sensory impairments and their families. But that doesn’t mean that we are complacent about the service we offer. New research commissioned by Sense - Creating Opportunities, Achieving Expectations - has estimated that there are at least 4,000 children who are deafblind in the UK. And we recognise that, in the past, we were able to give more help in some areas than others. In order to meet challenges like these, the Sense Children’s Specialist Services team has now grown to over 30 staff – specialist advisory teachers, children’s therapists and Children and Family Support Workers - and we now offer a `core offer of support’. This includes that each family will have their own indentified case worker, and will be supported during key transition periods in a child’s life. Since this initiative was launched we now receive 10 -15 new contacts each month from the families of deafblind children. Our journey At the end of 2011 Sense published a powerful new book containing the personal stories of deafblind people, their families and carers. Our Journey is a compelling account of the experiences of families involved with Sense and Sense Scotland over five decades. Honestly and courageously, the families detail the highs and lows of their lives. The demands of supporting a deafblind person, the struggles to find the right help, but also their joys and achievements are described in their own heartfelt words. This publication was only possible because of the dedication and drive of the families involved. Join the forum As part of our drive to help deafblind people to come together and feel less isolated, Sense supports 16 forums for deafblind people across the country – and we are planning to set up even more. Forums offer deafblind people the chance to meet up regularly in their local area, to socialise, make friends, share concerns and swap information. A small number of forums are just for people who use a Sense service. Others are for people who have been deafblind all their lives or for people who have lost their sight and hearing later in life. There are currently forums in Birmingham, East Anglia, Lincolnshire, Leicestershire, Kent, the north of England, Nottingham and Carrickfergus, Northern Ireland – with plans for new groups in Wales, Northern Ireland, South East England and the East Midlands. Holiday heaven in 2011 It was another inspiring year for Holidays team. In the spring, 18 people with acquired deafblindness enjoyed a week away in one of three classic British seaside resorts: Llandudno, Weston-super-Mare and Bognor Regis. `I enjoyed everything so much.’ said one holidaymaker, `it was lovely to be away and looked after.’ Then in the summer, 112 deafblind children, young people and adults went on 26 holidays supported by an amazing team of 31 holiday leaders and 148 volunteers. There was something for everyone – days on the beach, horseriding, go-carting, sailing, rollercoaster rides, visits to the zoo, pottery…you name it! Holidays also give families and carers a much-needed rest – with 96% of parents/carers saying the week gave them a valuable break. “Thank you so much,’ said one parent, `I don't think I could have continued for another week, I was just so tired.” New frontiers in art Three fascinating new art exhibitions in 2011 demonstrated that deafblind people bring a richly different perspective to art. In March, deafblind people from Providence Court in Exeter exhibited their vibrant work at four locations across the city. In Deafblind Awareness Week in June, deafblind artists created an intriguing, colourful environment from paintings, mosaics, sculpture and photography at the artsdepot in north London. Gillian Fellows won the Goldhay Arts Competition for adults with learning difficulties with her photograph My friends. In December, Ian Traherne and Lloyd McCulloch, who both have Usher syndrome, exhibited their work at the Reading Room gallery in London. Live adventurously `We need to be braver in supporting deafblind people to take risks, to exercise the kind of choices that others take for granted’ said Gill Morbey, CEO at the beginning of Sense’s 2011 Annual Lecture: An Adventure of the Senses. Living adventurously and achieving our dreams were two of the key themes of the lecture – with speakers Benedict Allen, the acclaimed author, explorer, TV filmmaker and presenter, and Dr Joe Gibson, Sense Scotland Outdoor Activities Co-ordinator approaching this in different, but complimentary ways. Benedict had crossed the Amazon single-handed; Joe supports deafblind people to take on challenging outdoor activities - both have crossed new frontiers. Factfile In 2011 269 deafblind adults living in Sense houses were given specialist support. 29 adults living in their own homes were offered 24 hour staff support through our supported living service. 255 deafblind people were offered stimulating and educational activities at our resource centres, and in the local community. 212 children and adults were provided with regular one-to-one community support services, including Intervenor Services for children and adults with congenital deafblindness, and Communicator-Guide Services for adults with acquired deafblindness. Deafblind people make the case Walk with Me, Talk with Me Social care in Britain - which is facing the biggest upheaval in living memory – is vital to ensure that deafblind people can retain their independence and enjoy a reasonable quality of life. Sense’s Walk with Me, Talk with Me campaign aims to ensure that those making the decisions in government understand the reality of deafblind people’s lives and the impact of poor social care. We have already had some success – the Law Commission has recommended that deafblind people should still have a right to a specialist assessment; and the Dilnot report recognised that social care is about more than hands-on care. But the Government still needs to act on these recommendations – and we will be keeping up the pressure. PIP mobility success – but the pressure continues Sense has been campaigning hard to ensure that the new Personal Allowance Payment (PIP), which will replace Disability Living Allowance (DLA) from 2013, recognises the needs of deafblind people. After a year of concerted pressure by Sense and other organisations, the Government decided to reverse previous plans to remove the mobility part of PIP for people in residential care – which would have severely restricted some deafblind people’s ability to take part in community life. Sense supported a group of deafblind people and families to take part in testing the proposed assessment process for PIP. This raised serious concerns about its suitability for deafblind people – and a series of key recommendations have been made to the Government. The Hardest Hit Concerns about proposed government changes and cuts to funding and services found powerful expression in May - as thousands of disabled people and a coalition of UK charities marched past the Houses of Parliament on the Hardest Hit march. After the demonstration, protesters met with their MPs to lobby them about cuts to vital benefits and services. In October, marches also took place in other cities, with further action planned for 2012. 10th birthday for the Deafblind Guidance To mark the tenth birthday of the Deafblind Guidance in March, ten deafblind people went to Downing Street and left a cake for the Prime Minister - before heading for a celebration party at the House of Commons. Later in the month young people and families met with MPs to explain the challenges they still face, The Guidance places a duty on local authorities to assess the specialist needs of deafblind people and to provide appropriate support. Pushing for education choice With the Government planning major changes to education provision in the UK, Sense has been lobbying hard to ensure that the educational needs of deafblind children and young people are fully taken into account. When a new special educational needs and disability Green Paper was launched in 2011, Sense worked closely with parents to look at these proposals – and engaged with the Government to make sure that the testing stage of the reforms reflects the needs of deafblind children and young people. Also, with the introduction of new models of school – including new Academies, Free Schools and Studio Schools - Sense’s challenge is to make sure that parents, deafblind children and young people genuinely have a choice about the school they would like to attend, how they learn and that the necessary specialist support is in place. Sense International Sense International supports the development of services for deafblind people in some of the most deprived parts of the world – East Africa, India, Romania and parts of Latin America. 2011 was another busy year: Friendship by touch “My name is Alice Nabbanja and I am the Community-Based Rehabilitation (CBR) Officer for Sense International (Uganda). The deafblind people I work with identify me by my long earrings. My job involves all sorts of different things. I work with partner organistions to provide rehabilitation services for deafblind people and their families. And I train volunteers to support deafblind people to learn all sorts of new skills, like bathing, eating independently and looking after the home. For many of the deafblind children we help this is their first real experience of communication and friendship. Hakim Mawejje was 11 when I first met him. He had never worn proper clothes and was kept near the latrine, probably to hide him from people. It was ‘friendship at first touch’ when we met - possibly because I allowed him to explore my body, comparing it with his. When he touched my nose, he let out a huge laugh, the first time anyone had heard him laughing.” Vital early help for children in Romania Sense International (Romania) SI(R) has been celebrating five years since the Early Intervention Programme – which screens new-born babies for sensory impairments – was launched. By 2011, almost 37,000 newborn babies had had their hearing screened at birth as a result of our involvement. SI(R) now focuses on ensuring that the babies who are identified with sensory impairments can begin a rehabilitation programme at Early Intervention Centres we have established in Bucharest, Oradea and Timisoara. At these centres children get the chance to go to school, learn vital life skills and grow in confidence. Behind the statistics - lives change From its small early beginnings in 1997, Sense International (India) SI(I) now works in collaboration with 40 partners across 19 states. Along with our partners, it is making a real difference to the lives of more than 37,000 deafblind people. Behind each statistic someone’s life has been changed: Mahadev was only seven when he lost his sight and hearing due to an accident. A bright and humorous child, he increasingly withdrew into himself as his parents searched desperately for a suitable school. Thankfully he was found by SI(I) outreach workers and started to receive home-based intervention services from trained special educators. He’s now making outstanding progress: he speaks eloquently by finger-spelling, runs happily to school with his brothers and sisters and plays again with his friends in the neighbourhood. Recognition In September, Sense International (India) was declared the joint winner of the Regional Award (West) for medium-sized organisations at the India NGO Awards. This recognised SI(I)’s professional management, innovation in local resource mobilisation, and the effectiveness of its work. Thank you Jeremy, welcome Sunil After a long and distinguished career as Chairman of Sense International (SI) Jeremy Charles stepped down in 2011. Jeremy supported SI for ten years and gave a huge amount of time and energy to supporting our work. As well as being a dedicated Chairman he engaged in numerous fundraising activities, including arduous treks in Chile, Peru and Wales. Replacing Jeremy in the Chair is Sunil Sheth, who has been a Trustee of SI since October 2004. He is a partner at London solicitors Fladgate LLP where he leads the firm's India team and has been a member of an Advisory Panel to the Bank of England. “I am excited about the opportunities that lie ahead,” he says, “and look forward to developing and expanding our activities with our partners overseas.“ Thanks to our amazing supporters Sense is hugely grateful to the individuals and organisations that choose to support us. Their generosity, loyalty and innovation never fail to astound. By taking on physical challenges, hosting special events and making regular donations our supporter allow us to continue to offer vital support services to deafblind people and their families. Best foot forward From running and swimming, to climbing and fly fishing, our supporters will go to any lengths to raise money for Sense: -• Over hundreds upon hundreds of people took to the streets all over the country to run for Sense and took part in anything from 10k race to full marathons. We were there to support our runners every step of the way from the Great North Run, Coventry Half Marathon and Virgin London Marathon to name but a few. -• Pupils from over 167 primary schools across the UK took part in the first-ever national Drumathon to raise funds for our work during Deafblind Awareness Week. At 12 o’clock on Friday 1 July, a crescendo of drums, cymbals and – well, anything you can imagine really – grew to an incredible cacophony to raise £27,000. -• Andy Ratclffe committed himself to a three-mile run every day for a year to raise money for Sense and raise awareness of volunteering for Sense. -• Our fabulous supporters aren’t afraid to get wet for Sense either, whether that is swimming in open water by taking part in one of the Great North Swims, in Windermere, Manchester or London or at our annual fly fishing event where keen anglers both novices and enthusiasts joined well known faces Chris Tarrant and Paul Whitehouse for a day of fishing and fundraising. You need friends Sense enjoyed a hugely successful partnership with Lombard as their charity of the year 2010/11 and raised an amazing £130,000. Lombard staff threw themselves into all sorts of events - the Three Peaks Challenge, Ridgewalk, Sense in the City Quiz and the Battleshops challenge to name a few. Sense was delighted to develop new relationships with Truck East, Anthony Collins Solicitors and recruitment consultancy Eden Brown. We worked closely with their staff teams as they organised fun days, ran in marathons and took part in custard pie and fake tan forfeits. We were also thrilled to team up with Iron Mountain, the information management company who aim to raise £100,000 for deafblind people this year. To start things with a splash their employees dressed as Smurfs and won Sense’s annual Docklands Dragon Boat Race. Float like a butterfly Nearly 1,200 supporters and their families took part in our summer 2011 appeal by sending us a message on the back of a butterfly. Our appeal, which introduced a little boy called Hassan, who attends the Sparkles pre-school group at Sense’s Anne Wall Centre in Barnet raised over £53,000. Very special gifts Last year we received more gifts in wills than ever before thanks to the extraordinary generosity of hundreds of our supporters, totaling an incredible £2.4m. Gifts such as this, no matter how great or small, enable us to provide support to more deafblind people than ever before. Sense International has a ball On 4 March, Sense International hosted a hugely successful Gala Fundraising ball at the lavish Grand Connaught Rooms in Covent Garden, London, which generated £80,000 in proceeds. Hosted by Sense ambassador BBC newsreader Louise Minchin, guests were treated to a menu created and cooked by MasterChef winner Dhruv Baker and enjoyed the mesmerising talents of a Bollywood dance troupe and an African drum band, Siyaya before generously supporting Sense International, prompted by Auctioneer Sir Jeffrey Archer. Sense Trading 2011 was a tough year for Sense shops, as it was for everyone in the retail sector. However we achieved good sales growth and our profits did not fall. The biggest challenge facing the charity retail sector is the diminishing supply of stock - which Sense is tackling by developing many new ways of appealing for and collecting donations. Fortunately this lack of stock is balanced by increased demand for good clothes and bric-a-brac in these hard times. Three shops were opened - with Darth Vader actor Dave Prowse slicing the ribbon with his light sabre at West Wickham, Kent. Battle Shops was once again a big hit with shoppers and supporters as Shell staff fought it out to achieve the highest sales across four Sense shops. Staff and supporters worked incredibly hard to ensure Sense shops once again stayed at the top of the charity retail sector - so a massive thank you to all. Our finances Sense 2010/11 was a challenging year for all in the charitable sector, but once again the staff, volunteers and supporters of Sense worked tirelessly and found innovative solutions to each issue as it arose, meaning we achieved our income target. Total income for England, Wales and Northern Ireland reached £58.3m, an increase of £0.8m over 2009/10. Fees and statutory grants, our main source of income, fell from £39.7m last year to £39m in 2010/11. This 1.76% reduction reflects the funding environment in which we work and demonstrates the effort Sense has put into reducing costs to support our statutory funders as they work to reduced income. Thanks to our incredibly generous supporters who ran marathons, climbed mountains, responded to appeals and remembered us in their wills, Sense saw fundraised income go up by £0.4m to £8.1m. We also managed to reduce our fundraising costs by £0.7m, so overall we were able to increase our work by £1.1m due to the efforts of all involved in our Fundraising. Alongside this, we were able to maintain our net income from shops at £1.1m, which is a considerable achievement in the current trading climate. Set with fundraising this gave us a combined income of £18.3. As a result, we were able to increase our services to deafblind people during the year as well as continue our campaigning, public awareness and staff development programmes. We spent £41.4m providing services for children, adults and older people - up from £41.2 last year - whilst our investment in campaigning, public awareness and staff development rose to £2.7m from last year’s £2m. Expenditure £m Adults 37.4 Children 2.7 Older people 1.3 Campaigning, publicity, quality improvements 2.4 Fundraising costs 2.8 Shops costs 9.1 Planned future expenditure 2.6 Total 58.3 Income Fees and Allowances 38.4 Statutory Grants 0.6 Fundraising and legacies 8.1 Shops 10.2 Other 1 Total 58.3 Sense International Sense International continued with the plan to rationalise service provision and support functions - and this helped income grow and costs reduce. The plan to grow fundraised income also saw Sense International place considerable effort into planning and providing for future investment. Overall income grew from £1.4m to £1.8m, whilst in-year expenditure fell from £1.422m to £1.387m Expenditure £’000 Cost of generating voluntary funds 76 Fundraising Costs 240 Charitable Activities 1068 Governance 3 Planned future expenditure 419 Total 1,806 Income Voluntary Income 685 Activities for generating funds 425 Incoming resources from charitable activities 694 Other 2 Total 1,420 Research for life Sense has set up a co-ordinated, scientifically rigorous research programme that will evaluate the impact of deafblindness across the whole of the lifespan. A wide range of projects include the Rubella Immunisation Project (Prenatal), The Joint Attention Project (Infancy), The Impact of Diagnosis of Usher on Life Planning and Usher Pregnancy and Parenting (Adolescence) and Screening for Dual Sensory Loss in Residential Homes (Old Age). Once these projects have been completed the researchers will share their findings with the widest possible audience of other researchers and Sense will establish a peer-reviewed journal, The Journal of Dual Sensory Impairment which will present findings from UK based and international research groups With thanks We were sad to lose a number of friends in 2011 who made a great contribution to Sense. These included: Peter Hills, Carol Pollington, Tony Kirk and Tamsin Wengraf-Townsend. Celebrating the ordinary Some of the things that deafblind people and Sense are involved with are high profile and get national media coverage. But away from the limelight, there are many, many everyday achievements that we also celebrate. Here are just a few of them: -• When Angela Perrow from Bradford was diagnosed with Usher syndrome she often felt very isolated so – with a bit of help from Sense - she set up a local support group. Last autumn they all went away for their first holiday together in the Lake District. -• Sarah O’Regan, who lives in a Sense house in Kettering, works as a volunteer one day a week in a Sense shop in the town and has developed a great rapport with the staff and customers. -• Our first-ever Building Bridges competition, organised by our Chief Executive, asked service users and staff to take a journey to a bridge and create a piece to sum up their experiences. Here are the winners from the Bourne and Glenside Resource Centres. -• The Hearing and Sight Impaired group, which is a branch of Sense for people with acquired deafblindness have kept up a busy social calendar over the year including visits to the Tower of London and Westminster Abbey. -• Sarah, Selina, Charlene and Leo had a super party to celebrate the wedding of Prince William and Kate Middleton in April. -• Six teenagers from the GOT (Get out there!) group in Cornwall took to the ice rink in their wheelchairs at the Eden Project - helped by a group of volunteers who guided them across the ice. -• Michael Clarke, who celebrated his 70th birthday in Devember, is one of Sense’s oldest residents. He marked the day by going out to lunch with friends and then having a small party in the evening. Other formats If you would like a copy of this booklet in another format – such as Braille, audio CD or large print – please contact us. Sense 101 Pentonville Road London N1 9LG Tel: 0845 127 0060 Fax: 0845 127 0061 Minicom: 0845 127 0062 E-mail: info@sense.org.uk Website: www@sense.org.uk Registered Charity Number: 289868 Company Limited by Guarantee. Registered in England and Wales. Company Number: 1825301 Patron: Her Royal Highness the Princess Royal