v

Summer 2019

Focus on friendship and young people Inclusive choreography

Finding Friendship

2

WelcomeContents

3

As we move into our teenage years, our friends become more and more important to most of us. It’s about forming our own identity away from the family, spreading our wings and becoming more independent.

But for young people with disabilities, this isn’t always so easy. As the young people you will meet in this issue of Talking Sense describe, fitting in with their peers and finding somewhere they can be themselves can be tough. Sometimes the nature of their disability will make connecting with others very challenging; but at other times the barriers can be man-made – such as prejudice and a lack of accessible amenities. And without extra support the young person can easily become isolated and lonely – especially once they have left school.

As you will read, Sense has responded to this in a number of ways: by offering ‘Get Out There’ clubs for young people (page 16), running our buddying scheme in London (page 22) and offering short breaks (page 34). Sense staff also go out of their way to support and enable friendships between the people we support (page 24).

These schemes give young people the chance to do all the regular teenage things: like hanging out together, trying new experiences and forming their own identity. Just like it should be.

Colin AndersonEditor of Talking Sense

Friends, fun – and independenceThe 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

Design: www.martinlore.co.ukFront cover: Charlotte and Ruby at the GOT day at Dairyland, Cornwall.

Volume 65, No 2 Summer 2019ISSN 1367 4604Registered charity no. 289868

Please let us have your news and views for the next Talking Sense by 1 November 2019.

Tel: 0300 330 9257Fax: 0300 330 9251Text: 0300 330 9252

colin.anderson@sense.org.uk

If you would like Talking Sense emailed to you as a PDF please email: supporterservices@sense.org.uk

Summer 2019 In this issue:

16 Young people take centre stage

The needs of young people with complex disabilities – especially for friendship and a sense of belonging – are often overlooked. Sense’s GOT clubs and Buddying Scheme aim to put that right.

News4 News

New government strategy to tackle disability barriers; GOT Cornwall’s 10th birthday; new funding from Sports England; Ridgewalk fundraising heroes.

6 Chief Executive Making connections; shortlist for the Sense Awards; new facilities at Sense College.

9 Fundraising newsTeegan says thank you; the magic of storytelling; Ronald’s new kitchen; soak up that summer raffle; Moments and Memories.

10 Sense Walks

Briefings12 Campaigns

Give it back to disabled children; the positive impact of social care; what Sense campaigns on and why; Carers Week.

14 Sense InternationalProgress in Kenya and Uganda; Deafblind Awareness Week; tenth anniversary of Sense International Peru.

16 Focus on young peopleA day out with the GOT (Get out there) club in Cornwall; other GOT clubs; the Buddying Scheme in East London.

24 Supporting friendship Asif and Ashton’s musical partnership; Allison and Kanhai, friends reunited.

27 Usher newsRaising awareness in Indonesia; Usher rehabilitation course.

28 Arts, Sports and Wellbeing Making yoga accessible; a new dance landscape.

33 Ruth’s birthday celebration

34 Jack and Jai’s holiday re-union

36 Out and aboutSaddle up; Quaker friends; London here we come; Michelle’s picture; Ricky’s job; splish splash splosh; my sensory space.

38 Information and adviceHow to set up a trust for your child; how can I get the maximum state pension?

54

NewsNews

New government plan to tackle barriers for disabled peopleAfter calling for this for many years, Sense has welcomed a new cross-governmental approach to disability to tackle the inequalities that disabled people face, as announced by Theresa May on 25 June.

Some of the key initiatives include: • The setting up of a new cross-

government team to work on disability issues.

• Consultations on higher accessibility standards for new housing, and also on work and health – including proposals around statutory sick pay and new measures to help employers better support disabled people and those with long-term health conditions in work.

• New ways of measuring how well companies deliver for disabled customers in essential markets, such as energy, broadband and water.

• A Green Paper on disability benefits.• Research into the experiences of

disabled people, including some work in partnership with the Office of National Statistics (ONS) to look at outcomes data.

Responding to the announcement, Richard Kramer, Sense’s Chief Executive said: “For too long now, disability policy has been focused on what benefits or services disabled people do or don’t access, rather than the lives they want, and have a right to lead. Equality for disabled people is everyone’s business and cuts across

all areas of policy and life, which is why we have been calling for and welcome this new cross government approach.”

“We know that today is just the beginning of the journey, but we look forward to working with the government as this work takes shape, and ensuring it is led by and centres around disabled people to truly deliver meaningful change.”

The Public Policy Team have been working with the new team ahead of this announcement and will continue to do so over the coming months.

See: www.gov.uk/government/news/pm-launches-new-drive- to-tackle-barriers-faced-by-disabled-people A tough,

amazing 52 miles In Sense’s tenth RidgeWalk in June, 78 intrepid walkers completed a gruelling 52 mile trek along the historic Ridgeway trail in Wiltshire and Oxfordshire to raise vital funds for Sense.

Walking through the day and night, our inspiring RidgeWalkers pushed themselves physically, emotionally and mentally. For each individual it was a very personal challenge, but they also worked as a team with full support from qualified expedition leaders.

“The RidgeWalk is tough, challenging and will push you to your limits,” said David Ash, who is the Head of Sense’s Operations in the Midlands (pictured). “But it will also give you lifelong memories and a renewed understanding of how lucky we are, how comfortable our lives.”

Inspired? Sign up for RidgeWalk 2020 before the end of August and use the code TSENSE50 to get 50% off your registration fee. Sign up at www.sense.org.uk/ridgewalk.

GOT a story to tellThe GOT (Get Out There) club in Cornwall, which is a community-based short break service that supports young disabled people, celebrated its 10-

year anniversary on 29 April. To mark the occasion, HRH The Princess Royal visited the group and was presented with a book of stories written by the

young people which describes their growth in independence.

“Equality for disabled people is everyone’s business”

Each person’s story reveals how much their life has been touched by the Sense GOT group. For some, it is the opportunity to experience new things and visit new places that keeps them coming back. For others, it is simply the chance to make friends. One thing is for certain – everyone has a story to tell.

To see a copy of the GOT book contact simon.allison@sense.org.uk

Our new gymnastic partnership

Sense has joined forces with British Gymnastics to increase the number of people with complex disabilities accessing gymnastics sessions.

The three-year collaboration will

help to provide crucial training opportunities to coaches and equip them with the skills and confidence needed to deliver gymnastic sessions to people with complex disabilities. Sense will also deliver online content to support face-to-face training for gymnastic clubs.

Research carried out by British Gymnastics found that 66% of coaches are keen to develop their skills in coaching participants with sensory impairments.

As part of the our ‘Sporting Sense’ project, launched in 2016, Sense worked successfully with British Gymnastics to offer gymnastics

programmes to people with complex disabilities and training opportunities for coaches. Our new partnership will build and expand on this work.

Callan Barber, Midlands Sport Coordinator, said, “We’re really looking forward to working with British Gymnastics over the coming year and beyond, to expand provision of gymnastics classes for people with complex disabilities. We want to ensure that gymnastics clubs provide participants with the best experience possible, and this comes from coaches having a better understanding of disability, and learning new methods of communication.”

Chief Executive

76

Chief Executive

“I’m very proud to hear stories about how people connect through the work of Sense”

Helping people connect is at the heart of what Sense does. Whether it’s the bringing an individual and their support worker together, helping someone to take part in community

life , or giving people the chance to meet up: every day at Sense, we witness these special connections being made, celebrated and strengthened.

This is what makes Sense’s work so special. From those everyday moments like sharing a joke, to rediscovering friendship with someone after a long gap, to those big milestones, like leaving the house for the first time to go to the shops. I’m very proud to hear stories about how people connect through the work of Sense.

Our campaigning work over the last few months has highlighed the importance of people coming together, combining compelling life stories with strong calls for change. This June we were part of Carers Week which focused on ‘Getting Carers

Connected’. We worked in partnership with seven different charities to recognise the efforts of the UK’s 8.8million carers – who, like many of you, provide support to their loved ones day-in, day-out. A third of unpaid carers feel lonely: it is clear much more needs to be done to support carers, but I’m proud of the range of the ways Sense supports and connects carers to each other.

We’ve also campaigned strongly with the group of organisations which make up the Disabled Children’s Partnership. The recent Give It Back campaign called on the Government to plug the £434 million funding gap in children’s social care. Over 12,000 people signed the open letter within the first 48 hours of the campaign: a testament to how, by raising awareness of the challenges faced by families like yourselves, we can really galvanise public support and pressure the government to take action.

Later in the year, we’ll be running our first campaign to encourage more members of the public to connect with Sense, so that we can raise awareness of families like yours, and the other people we support – so that even more people get behind Sense and support us to change the world for people with complex disabilities.

I’d also like to take a final moment to congratulate everyone who has been shortlisted for a Sense Award this year – you can read more about them on the next page. It’s a pleasure to hear about all of the exceptional nominations this year, and I’m looking forward to celebrating your achievements at our awards ceremony in September.

Richard Kramer CEO of Sense and Sense International

Making connections

New horizons for CollegeOn Tuesday 14 May I was delighted to join learners, parents, local councillors and staff to celebrate an exciting new chapter in the life of Sense College Aldeby.

The College first opened in 2014 with three learners, but by 2018 we were supporting 11 learners, and realised we were outgrowing our original building. So we put our heads together with the Sense Estates Team who came up with an innovative solution of adding two Jack Leg cabins to the existing site.

The new buildings means there is lots more space for learners – including teaching space, multipurpose areas for arts activities and multisensory focused projects, as well as facilities like accessible kitchens and toilets. It also means that there is extra space in the main building which we’ve used for a rebound therapy trampoline.

After the opening ceremony, the guests were invited to join a sensory session in the new cabin. Other learners gave tours of the sensory garden and demonstrated the new wheelchair accessible potting benches and flower planters, with help from the talking flowers!

2019 Sense Awards shortlist announced!After two months and a record number of over 150 nominations, the judging panel has had the tough job of choosing the 2019 Sense Awards shortlist.

With 16 categories, including some new ones, this year is set to be bigger and better than ever before and we can’t wait to recognise all the incredible individuals and organisations at this year’s award ceremony at Sense TouchBase Pears on 19 September.

The 2019 Sense Awards shortlist is as follows.

Campaigner of the Year: Holly Tuke, Keith Butler, Anya Sparks

Carer of the Year: Kirsty Davies, Kit Henderson, Collette Smith

Collaboration of the Year: J’re hair design/Jason Reddick, RBSA (Royal Birmingham Society of Artists), Disabled Children’s Partnership and The Sun

Diane Cardwell Award for Professional Excellence: Aimee Havens, Elaine Turner and Hastings Avenue, TouchBase South East

Individual Fundraiser of the Year: Chrissy Dance, Robert Smith, Mark Hamsher

Innovation of the Year: Wear Works, Brai Book, Justin Wiggan

Outstanding Contribution to International Development: Geoffrey Atieli, Florian Cyril Mshanga

Person of the Year: Martin Solomon, Aneeba Ahmed, Victoria Hilton

Sibling of the Year: Dean Newbronner, Nathaniel Greenhouse, Joshua Rolph-Wills

Team Fundraiser of the Year: Mondelez International Staff, Christine Brennan and Lindsay Cornish, Sam Litehrland and Terri Marie Yoxall

Volunteer of the Year: Chrissie Blake, Hussam Astwan, Simon Angell and Peter Brown

Young Person of the Year: Saihan Islam, Joshua Eccles, Abdullah Faisal

Quality Board Award: Yaxley Supported Living, Neale Avenue, Gillot Road, Shipdham Road in Dereham

Media of the Year: to be announced on the day

Parliamentarian: to be announced on the day

Peggy Freeman Award for Exceptional Contribution to Sense: to be announced on the day

This year’s media partner is national disability magazine, Able, who have kindly donated 25 free subscriptions to their magazine. We’ll enter everyone who has submitted a nomination into a prize draw and our 25 winners will be picked at random.

Pat Dyson opens the new extension.

9

Fundraising news

8

Fundraising news

Teegan says thank you!Thanks to the overwhelming generosity of Sense supporters, more children like Teegan will have the chance to experience a unique Sense Holiday next year!

At the time of counting, nearly six thousand supporters have responded to this year’s Sense Holiday Appeal, raising £186,083 in individual gifts and creating 46 new Direct Debits, with new donations and messages of support continuing to pour in, plus one cuddly toy giraffe – Teegan’s new favourite toy!

“To me, the wonderful thing about Sense Holidays,” says Valerie, Teegan’s Holiday Volunteer, “is that they give children like Teegan the freedom to experience all kinds of thrilling activities that they might not usually be able to take part in because of their disabilities. Now, with the incredible donations we have received, Sense can start organising this year’s holidays. I can’t wait to see the joy on the children’s faces when they get stuck into all the exciting activities on offer.”

Here’s a photo of Teegan saying a big thank you to kind supporters like you who gave to Sense’s 2019 Holiday Appeal.

Help Jessica experience the magic of storytelling

Jessica is a cheeky, bubbly four-year-old and her favourite story is called “Tortoise! Tortoise!”

She is deafblind and has a very rare condition called Tetrasomy 18p, which means that she has problems with her muscle tone and is developmentally about two years behind other children her age.

For any parent, playing with your child – whether it’s reading stories, playing with blocks, or simply playing outside– is a vital way of bonding. But for parents of a child who is deafblind or who has complex disabilities, it is vital to get expert advice on how to adapt activities to their child’s needs.

Jessica can’t see the pictures or hear the words that are read from her favourite book. But with the support of Nicky, her Sense

Children and Family Support Worker – who uses a small wooden tortoise, a balloon pump, an ice pack and a spray water bottle to bring the story to life – she can be guided through a sensory adventure of wind, snow and rain to help Tortoise come out of his shell!

There are many different sensory stories that can be brought to life with the help of Children and Family Support Workers like Nicky. By supporting our Summer Appeal 2019, you can help another child to experience these, and many other important opportunities to learn, play and develop.

To support our Summer Appeal 2019 please visit www.sense.org.uk/story or call our Supporter Services team on 0300 330 9257. Thank you!

Ronald’s kitchenRonald Harrison is one of the many generous supporters who left a gift in his Will to Sense. He chose to remember Sense because his niece, Janet, lives at our Sense Home Watergate, in Lincolnshire. Thanks to his generous gift we were able to have a new kitchen fitted at the home making it more suitable for the people who live there to enjoy cooking and baking. In particular, Janet loves to cook and bake so this seemed a fitting tribute. Ronald’s gift will have a huge impact for everyone who lives at the home.

Create a tribute to a loved one

At Sense, we know that when a friend or family member passes away it is a really difficult time. Over the past few years, we have found that more people are taking comfort in creating tributes to their loved ones and so we have

created Moments and Memories Funds. You can set up a Moments and Memories Fund on Sense’s website

where you can also share photos, stories, songs and favourite memories as well as lighting candles to mark special moments or anniversaries. These tribute funds also provide you with the opportunity to fundraise online in their memory as well as an easy way to pay in donations made at funerals.

There is no cost to set up a Moments and Memories Fund and no obligation to fundraise. We hope that the Moments and Memories Funds will provide a place for people to share happy memories in what can be a very difficult time.

To set up your own Moments and Memories Fund please visit www.sense.org.uk/support-us/fundraise/give-in-memory or alternatively contact the Community Fundraising Team on community.team@sense.org.uk.

P lay the Sense Raffle this summer to be the lucky winner of a whopping £4,000! Plus, there’s

an amazing second prize of £500, a third prize of £250, and ten runner up prizes of £50 up for grabs. Ten lucky supporters could also win their very own Teddy Sense! Not only that, return your tickets within 14 days and you could win a luxury wicker picnic basket in our Early Bird prize draw - perfect for enjoying a lazy summer’s day in the sunshine.

To enter the raffle, please call our Supporter Services team on 0300 330 9257. The raffle closes on the 12th September 2019 and the draw takes place on the 17th September 2019. Good luck!

In June, green fingered volunteers from Marks and Spencer got stuck in and cleared a space at Sense TouchBase Pears that will be used for new plants in a sensory garden. Thanks guys!

Help us show the impact of social care There has been a lot of negative publicity in recent years about failings in social care in Britain. At the beginning of June for example, a double bill of BBC Panorama programmes drew attention to the realities of the social care crisis – and featured disabled people and their families as they struggled to get the care and support they needed.

There is currently a £1.5 billion funding gap in social care, which is projected to reach £4.4 billion by 2023/4. Sense has been waiting for a number of years for the Government to find a solution to this crisis – and meanwhile more disabled people are reaching breaking point without the care and support they need.

We know that properly funded and well delivered social care can have an amazing impact on people’s lives. Social care should be about much more than providing basic help with tasks like washing and dressing. It is about supporting someone to live as independently as possible, to make choices and live a fulfilling life. Most importantly, best practice should put the individual at the centre of their care and enable each person to achieve their goals – whether it’s making a cup of tea or finding employment.

Sense will continue to raise awareness of the importance of solving the social care crisis. Our Policy Team work with many other charities who are campaigning about social care, and we are also meeting with MPs and Ministers in the Government to continue to raise the issue.

If you have a story you’d like to share about the difference social care has made to you and your family, please do get in touch with our Policy and Campaigns Team.

We’d also like to hear from you if you used to receive social care, or if you’ve had your support cut.

Email: campaigns@sense.org.uk, Telephone 0300 330 9258, Public Policy team, Sense, 101 Pentonville Road, London N1 9LG

Good social care can have an amazing impact on someone’s life

11

Campaigns

10

Deafblind Awareness Week: 24 – 30 June

Give it back to disabled childrenThe #GiveItBack campaign – which is calling on the Government to plug the £434 million annual funding gap in disabled children’s social care services – was launched in June by the Disabled Children’s Partnership, a coalition of over 60 charities, including Sense.

The campaign, which is being supported by The Sun newspaper, has highlighted that disabled children are being prevented from living their best lives, and families are being driven to breaking point. Too many disabled children are in unnecessary pain, missing school or college or experiencing poor mental health because they are not able to access appropriate services.

A survey by the Disabled Children’s Partnership found that only four per cent of parents and carers feel they get the the support they need to care safely for their disabled children. At Sense we see the daily impact of the lack of special services on the families we support.

Over 15,000 people have already signed a letter to the Government asking for the £434 million annual funding gap to be plugged. For more information, or to show your support by signing the letter, visit https://www.sense.org.uk/support-us/campaign/disabled-childrens-partnership/

Sense North Wales family branch took a scenic route and have raised £119 so far - and counting! Kay, who organised the walk, said “It was very heartwarming to have the support from the community”.

Walking the walkThere were more activities than ever during Deafblind Awareness Week this year, with Sense Walks taking place all across the country. Hundreds of people connected to Sense put in a brilliant effort and helped us to reach thousands of people in their local communities.

In Birmingham, children, families, volunteers and our Children and Young People Specialist Services Team came together for a sponsored 5k route around a packed Cannon Hill Park, in Birmingham, with sensory stations throughout – and Steve McCabe MP following the route with families. The walk ended with a picnic in the park and face painting for children and the event has already raised over £1,000 for Sense.

Students from Sense Centre Knapwell walked to the small town of St Ives, near Cambridge. Rachel used a BIGmack switch (a communication aid) and David used his head switch to shout, “It’s Deafblind Awareness Week, and we’re raising awareness of Sense. Woo hoo!”

Fifty feisty campaigners invaded Caerphilly Castle and marched around the grounds and town.

This year’s Barnet walk – which set out from TouchBase South East and headed down the High Street was bigger and better than ever!

Around 100 Superheroes from Peterborough took an awareness-raising stroll around Ferry Meadows.

Staff and volunteers from Sense’s shops around the UK really got behind Deafblind Awareness Week.

13

Your lettersCampaigns

12

Carers WeekIn Carers Week in June, Sense teamed up with a coalition of organisations to celebrate the amazing work that the 8.8million UK carers do – and to highlight the need for carers to receive more support as they care for their loved ones.

Activities across the week included the Parliamentary launch event where two Sense family carers, Janet and Inge, were able to share their experiences with MPs and Ministers.

There were also media appearances, a carers’ event at Sense TouchBase Pears. and information available in our Sense shops. It was a fantastic week, raising awareness for the important work that carers do and we were proud to be a part of it.

If you’d like more information about the Decisions to Make, Steps to Take toolkit that we have created to support families to plan for the future, please contact Sense Information and Advice team at info@sense.org.uk

Dear Talking Sense,From Mark Pampel

AI technology - accessing essential white goods and household appliances

Just a few years ago I remember attending a Sense event at the Institute of Physics which included a video showing how a deafblind child carefully uses his other senses to manage, and be able to locate, objects to use safely e.g. a heated lamp. He was able, by using his hands, to find and detect the safe position of the lamp to avoid being too close to the heat source despite being deafblind.

I fully empathise with this and now that I am an adult with no useful eyesight and hard of hearing I definitely require using my hands to reach out for, for example, tactile controls and switches with a raised hob to operate my cooker safely. My situation has not changed and I am able to use these essential items.

Unfortunately, now and certainly in the future, accessing essential new household equipment is changing drastically with the introduction of AI technology and this will be a major disadvantage to many people who are deafblind. We will all be expected to use smart gadgets to operate everything with the removal of tactile controls and switches e.g. kitchen items, even kettles

making it impossible for me to manage. Unless something is done to influence

the manufacturers of the needs of deafblind, elderly and vulnerable groups we will be left totally isolated.

To date, although being advised to contact the Pocklington Trust and RiDC I have been informed there is nothing else they can do to address this matter. Should this issue be highlighted in the next strategic plan for Sense? What do other Sense members think about our future?

Sarah White replies:

Thanks for writing to us Mark. This is definitely, an important issue for many people. It’s not an area that we are able to focus on at Sense at the moment, but I know that our friends at the Thomas Pocklington Trust do some great work on this in partnership with the Research Institute for Disabled Consumers (RiDC). This month they have published some research into this very subject, reviewing washing machines for accessibility features and recommending the best ones: www.pocklington-trust.org.uk/ ridc-top-ten-washing-machines/. Also available in Braille (phone 0208 9950 880) or as an audio recording over the phone (Dial 0330 223 53 55 and follow the instructions).

What we campaign on and why

Sarah White, Head of Policy and Campaigns, explains how Sense decides which issues it should campaign about.

Sense has a proud record of campaigning to make sure that society addresses the needs of people with complex disabilities, including deafblindness. This can mean many things, but has included supporting disabled people and their families to meet with MPs to share their experiences, campaigning on social care and influencing the development of legislation (e.g. the Children and Families Act or Care Act) to ensure that it meets the needs of people who we serve.

There are many things we could campaign on – and we always want to hear people’s ideas and feedback – but in order to be effective we do have to prioritise.

Here are the questions we ask:

– What is the problem and how many people does it affect? It’s important for us to know the scale of the problem. If it is something that only affects a small group of people this may not be the most impactful way to use our resources.

– Is this something we can change? Sometimes there are ways we can tackle a problem – for example, by asking the Government to invest more money in something or to change a law. At other times it’s not easy to see the solution – and if we don’t think we can bring about change then we are less likely to work on it.

– Is there anyone else already working on this? There are many different organisations who campaign on different topics. Sometimes there is strength in joining with them to raise the profile of an issue. At other times, it’s better to leave the topic to the organisation to work on rather than duplicating the great work they’re doing. We sometimes direct people to other organisations’ campaigns if we know they’re working on something important.

This year we will be concentrating on the following areas:

– Adult social care: continuing to call for the Government to invest more money in social care, and the importance of social care for disabled people. (see page 11)

– Children’s social care: campaigning for more investment in children’s social care, developing a piece of work on Sleep and supporting the #GiveItBack campaign. (see page 11)

– Education: raising the difficulties families are having with the Education Health and Care Plan (EHCP) process, as well as funding issues, and a piece of work on school transport.

– Welfare benefits: ensuring that the application and assessment processes for disability benefits are accessible and that people get the support they need.

– Loneliness: continuing to make sure that disabled people are considered in plans around tackling loneliness.

Whilst we know we can’t campaign on every issue, we are passionate about campaigning and the change it can bring about. That’s why we’ve written a guide for people who want to run their own campaigns. The guide is available from https://www.sense.org.uk/support-us/campaign/campaign-toolkit/

Sense has a proud record of campaigning to make sure that society addresses the needs of people with complex disabilities

YOUR LETTERS

Inge Ahmad, Janet Lee, Jess Phillips MP and Richard Kramer

14

Sense InternationalSense International

Great progress in Kenya and Uganda Alison Marshall, Sense International’s Director, and Harriet Smith the Programme Manager for East Africa, visited Kenya and Uganda recently and were impressed by the developments they saw.

Over the last three years, Sense International Kenya has been working with the Kenyan

Ministry of Health to set up the first ever sensory screening and early intervention service in the country. New units have been established in government- run health centres so it is easy for parents and carers to bring infants for eye and hearing tests, and therapy if needed.

At Waithaka Health Centre, Occupational Therapist Elly provides therapy and advice to children with multi-sensory impairment and their parents. When two-year-old Blessing first came to the unit in June 2018 she couldn’t lift her head and would only respond to loud noises. She now comes to the centre twice a week, has learned to sit up on her own, and her hearing has improved thanks to sensory stimulation. Her mother Mary is also able to look at videos on her tablet provided by Sense International which show her how to work with Blessing between sessions. “The videos at home help so much,” she says.

Sense International has also trained nurse Mark to bring mothers and babies from the Maternity Unit at Mbagathi Hospital for screening, averaging 15 a day. He goes through the risk factor questionnaire, and if a risk of visual or hearing impairment is identified he conducts a hearing and vision test. If an impairment is identified, then Mark refers the child to a specialist within the hospital for further testing.

On to UgandaWe then moved on to neighbouring Uganda where a new piece of legislation, which recognises deafblindness as a distinct disability for the first time, is awaiting sign off by the President. Chris Iga (Country Director Sense International Uganda) and Alice Nabbanja (Technical and Training Officer) took us to the Department of Disability and the Elderly to discuss next steps.

Following this, we took the Ugandan Commissioner for Special Educational Needs out to see how Sense International supports children with

deafblindness. We went to Kasangati Health Centre where Occupational Therapist, Rebecca, explained the screening and early intervention process. Next we visited four-year-old Shaila at home, who is deaf, blind in one eye, and needs an operation on her other eye. She doesn’t speak but is a bright girl and learning sign language fast. She enjoyed following Alice’s hands when she demonstrated the sign for bathing. This home-based learning is a vital step in the inclusive education programme as Sheila needs to be able to communicate first before joining her local school.

One of the schools supported by Sense International Uganda is Kasaasi Primary School, a model ‘inclusive’ school with ramps, railings and accessible toilets. The Deputy Head was pleased to welcome the Commissioner and explained how the school supports several learners with disabilities. Zara, who attends the school, is deaf with partial vision. She enjoys drawing and her class teacher showed the commissioner a picture she had drawn of her mother.

At the end of the visit we felt that the Commissioner had been impressed by Sense International’s work. He acknowledged the government’s responsibility to do more for children with disabilities and promised to raise awareness about deafblindness and champion inclusion within the Ministry of Education.

“She enjoyed following Alice’s hands when she demonstrated the sign for bathing.”

Worldwide celebration of Helen Keller Celebrations for Helen Keller Day took place around the world on 27 June, with Sense International teams raising awareness of deafblindness.

• In Romania, as part of the ‘When I grow up, I will be…’ project, children and young people had the chance to explore new things, express feelings and sense the world around them. Some of the younger children with multi-sensory impairment experienced horse therapy, as well as outdoor activities in the mountains, forests and at the seaside. Meanwhile, young people with multi-sensory impairment visited companies for work experience and to build their independence.

• In Uganda the team welcomed officials from the Ministry of Education, Ministry of Gender, Labour and Social Development – as well as other stakeholders – to an event to raise awareness of tactile communication. And in Tanzania over 50 national stakeholders, including key decision-makers from government, NGOs and UN bodies, attended an event to find out about tactile communication.

• Sense International India, in partnership with its regional centres, also hosted several awareness raising activities and for the fifth year in a row, ran ‘Messengers on Cycles’ – a charity cyclothon, with participants riding together to promote inclusion, education and support for children and adults with deafblindness.

• The Peru team held a photo exhibition called ‘Images of Deafblindness’ as well as opening several new educational programmes for young people with deafblindness.

Ten years of progress in PeruSense International Peru has achieved great things since it launched in June 2009.

Under the leadership of Ricardo Zevallos, Director of Sense International Peru, a key goal has been to develop inclusive education for children and young people with deafblindness. A key part of this has been training teachers and raising awareness about how they can support learners. Over the last decade the team has trained around 4,000 teachers, holding additional workshops for another 4,000 people around awareness of deafblindness, as well as developing online courses that can reach teachers and children living in the poorest and most remote communities.

The teams’ work has meant that deafblindness is now included in the education section of the national equal opportunities policy. Sense International Peru also worked in partnership with the Ministry of Education to train health professionals from Lima to identify and support children with deafblindness. At the same time a vocational training programme was set up to empower participants with skills such as baking. As well as learning the skills of the trade, the participants receive business planning training to help set up their own small enterprises.

Last but not least, Sense International Peru created a voluntary organization, Association of Friends of Deafblind, Deaf and Blind People (AMISSORCI), and published a political advocacy handbook for community-based organisations so that people with deafblindness and their families can campaign for their rights.

This is just a snapshot of some Sense International Peru’s achievements over the last decade. You can find out more at: https://senseinternational.org.uk/our-work/peru

15

17

Focus on young people

16

Focus on young people

“I can be myself here”

A s the young people bustle into the café, with big smiles on their faces, there’s lots of noise and excitement. “There’s Liam!” says Tommy and runs

up to join him. “Hello Ruby!” says Charlotte and gives her a big hug, “are you ok?” Just like any other bunch of teenagers hanging out together you might think – and in many ways that would be true.

Many teenagers would take this sort of interaction pretty much for granted. But for the young people here – who have a range of disabilities – this gathering is a precious space where they can meet their friends and be themselves.

They are all members of Sense’s Cornwall GOT (Get Out There) group which meets regularly to bring young people with a range of disabilities together for fun, friendship and stimulating new experiences. Today they have come to Dairyland near Newquay, which offers all

sorts of farm-related activities – from handling small animals to milking Clarabelle, the mechanical cow! And meanwhile their families have been able to take a much-needed short break from their caring responsibilities.

Since it was started by Simon Allison ten years ago, the GOT group, has enjoyed over 400 activities across Cornwall – as well as taking drama groups to Australia and Europe. In fact, this approach has been so successful that Sense has set up other GOT groups in Sandwell near Birmingham and Stockport – with another in the pipeline in Warwickshire.

Sense also runs a one-to-one buddying scheme in East London for young people in East London and you can read about this on page 22.

The importance of friendship Sense’s GOT clubs and Buddying Scheme bring a lot of pleasure to everyone involved, but they also have a very serious and important purpose. Research has shown that having fun and making friends are crucial parts of a young person’s life, happiness and wellbeing. In her 2016 paper ‘Friendship opportunities for disabled children and young people’, Dr Anita Franklin from Coventry University wrote:

‘Disabled children and young people highlight the importance of friendships in their lives, and research provides evidence of how friendship is central to our identity, sense of

belonging, understanding of relationships, enjoyment and well-being.

Opportunities to make friends and manage the difficulties of friendships is part of growing up and leads to increasing independence, strengthening our abilities to negotiate, make choices and exercise control in one’s own life. A consistent message from research is that creating accessible environments where children and young people can develop friendships and meet friends is a priority for disabled children and young people, especially outside school.’

Barriers to friendshipUnfortunately, research has also shown that many disabled children and young people find it very difficult to make friends and often have poor social lives. Rachel Perris, who is the mum of GOT member Ella says: “I don’t think there is often much allowance in the modern world for the needs of young disabled people. The young person can become quite withdrawn and isolated and lose a lot of confidence.”

There can be a number of factors involved – from the nature of a young person’s disability to barriers in society in general. If someone has complex disabilities, perhaps including sensory impairments, this will make

Scarlett loved the tractor ride

Sense’s GOT (Get Out There) groups give young people the chance to come together, make friends and be understood. Colin Anderson recently joined the lively GOT group in Cornwall to celebrate their tenth anniversary with a day out at the farm.

Charlotte (left):

“I find it really fun and it has made me more confident in myself to speak out and to make new friends. Some of my friends have the same disability as me so we understand each other. I enjoy hanging out with everyone.”

“Having fun and making friends are crucial parts of a young person’s life”

1918

Higher for Children strategy – with Sense overseeing the management of the group.

He’s also the coordinator of the Deafblind International Youth Network and some GOT young people have joined youth network activities in Switzerland, Denmark, Australia, Paris and Ireland.

Since then, he and assistant Heather Lawry have run over 400 GOT activities – everything from surfing to spray painting, bell ringing to bar-b-ques, both at the weekends and in the school holidays. One of the key reasons for the group’s success has been the support of 15 – 20 brilliant volunteers, many of whom have supported the group for many years. “There’s been a lot more continuity with the staff and volunteers at GOT than there often is with other services,” says Rachel, “and as the parent of a very vulnerable child that’s very important to me.”

The group caters for young people aged 11- 18 with a wide range of challenges, including sensory impairments with additional complex needs, restricted mobility, medical conditions, epilepsy, diabetes, autism and behavioural support needs.

Simon is proud that “we can support individuals with all sorts of needs – from someone with complex needs, who might need help to feed and go to the toilet, to someone who is going off to university. There are often friendships between people with different

support needs, and sometimes the more able kids will support others with more complex needs.”This is one of the great strengths of the GOT group. “In the group the young people understand each other. They are in tune with each other and there’s a lot

of awareness between them. And they don’t feel different, like they often can do. We offer activities where friendships can develop, where you are working together in a team – like surfing, or a treasure hunt where you are all in it together. They get a sense of accomplishment, that they’ve met a lot of challenges they never thought they could have.”

It is also important that the young people are fully involved in making choices about what they would like to do and there are regular planning meetings where everyone gets together to have their say.

Being yourselfOne of the most telling things that many of the parents say about the GOT group is that it has enabled their son or daughter to be themselves. “Charlotte is comfortable at the

communicating and interacting with the world and other people very challenging. And some young people with learning disabilities, including autism, may find that making relationships doesn’t come easily to them.

Some young people may also have behaviours that other social groups would not be able to cope with. “Some children, because of their behaviour needs, would struggle to go along to a mainstream groups, like Scouts”, says Claire Bodenham who runs the GOT group at Sandwell near Birmingham. “They would be disruptive to the other children – and the people who run them are not trained or prepared to manage certain behaviours.”

But at the GOT club, if they have behaviour that challenges others, they can still be embraced and have their own youth club, and do something which every other child can do – go to their regular club, make friends and socialise.”

There can also be lots of practical barriers to young people leading a sociable, connected life. If they attend a special school that draws students from a wider geographical area for example, they may not see their friends at the weekend or in the holidays

– and friendships can be broken or hard to sustain when people leave school. Life for a disabled young person in a mainstream school can also be difficult for a child who is seen to be different. “One of the questions Ella has always asked me,” says Rachel, “is why people don’t talk to her at school? It is easy for her to be ignored.”

Charlotte also doesn’t find it easy. “She can feel uncomfortable at school,” says Maria, her mum, “and there was some bullying in the past that wasn’t really dealt with. Charlotte notices that she is different and she finds that a struggle. She does enjoy her lessons, but finds the social side difficult. She doesn’t pick up on social cues and doesn’t join in much. She’d much rather stay at home, or go to the GOT group to be honest.”

These difficulties also have a big impact on families. As well as all the physical and mental demands of caring for the young person, families are usually the ones to support people to do things in the community - so these young people are teenagers but are almost always with their parents. “You worry, don’t you?” says Maria. “You want them to have friends and get out there, but us parents have to ‘make things happen’ more for our children socially, rather than them sorting it out themselves. It can be an enormous strain.”

GOT is bornIt was these challenges that inspired Simon Allison to set up the first GOT club ten years ago. He worked as an intervenor at Exeter School for the Deaf and became aware that many of the pupils were quite isolated at the weekends. So he set up a weekend social group and later was able to get funding from Cornwall Council as part of the government’s Aiming

Focus on young peopleFocus on young people

Ella:

Jake meets the white rabbit

Liam and Alfie on the tractor ride

“It was difficult to make friends at school. It’s really nice here and we go to different places. Now I’m a volunteer, my job is to take photos and I keep an eye on people to make sure they are ok.”

“She can feel uncomfortable at school”

“There are often friendships between people with different support needs”

2120

Following the success of the GOT group in Cornwall, Sense has set up other GOT groups in Sandwell in Birmingham and Stockport, with a new group in Warwickshire coming on stream soon.

The Sandwell group, which is run by Claire Bodenham, used to run on Thursday evenings but now meets on a Saturday following a consultation with parents. This works better for them, they say, because the young person will be less tired and stressed at the weekend – and it gives them more time to spend with siblings.

There are also groups for two age ranges: younger children aged 8 – 11 come along in the mornings, and young people aged 12 – 18 come along in the afternoon. The groups cater for children and young people with a wide range of disabilities, including: ADHD, Downs Syndrome, autism, CHARGE and Usher.

“Our aim is to really build up the children’s confidence, especially in a group setting, and help them to be independent,” says Claire. “We do all sorts of things: go to local parks and activity centres, do pizza making, cake making, kayaking, trampolining… We did pumpkin picking at a farm at Halloween and everyone got covered in mud! With the older ones it might be more about life skills – for example, safety sessions on things like stranger danger. The younger ones just like to get messy!”

The group gives the young people the chance to enjoy a bit of independence and

freedom. They enjoy having a bit of banter with each other and the staff, and they’ve made little friendship groups. “Being part of that, having a social life is so important for a teenager,” says Claire. It helps them to interact with people in the world and become an adult. When they come to the group they know they can see their friends. It’s something they know they are going to do regularly, socialising.” Some of the children do lack confidence and can get anxious and hide away when something is a bit overwhelming for them. Many can’t express themselves verbally so they might become aggressive or throw themselves to the floor. “This makes it difficult for them to go to a mainstream group, but this is their club,” says Claire. “If they have behaviour, they can still be embraced and have their own youth club, and not be asked to leave, which parents hold dear. Their child can do something which every other child can do – go to their regular club, make friends and socialise”.

The group also runs all sorts of social events, like Halloween and Christmas parties.

“It’s something the young people really look forward to. They talk about it for weeks and weeks beforehand. It’s absolutely essential for any young person as they get to their teens to have that sort of social interaction.”

If you would like to find out more about these groups please contact: ruth.bennett-anderson@sense.org.uk

GOT group”, says Maria, “she can just be herself there, there’s no expectations on them. She doesn’t do chatting usually, but she does there. I don’t know how, but it just works.”

That is certainly plain to see at the GOT get-together at Dairyland. Charlotte and her mates Ruby, Maddy and Siobhan bomb around, chatting, laughing and roughhousing in the adventure area. There is also a lot of kindness and support between them and some of the older ones keep an eye

out for the others. “Ruby has the same disability as me so we understand each other,” says Charlotte.

Eleven-year-old Tommy is another young person who has very much come out of his shell since joining the group. He has autism and sensory processing difficulties and used to be very self-conscious about this.

“Before, when we used to go anywhere”’ says mum Sally, “he was very reserved, trying to hold back all his feelings I suppose. But now he doesn’t care what people think so much. He carries his teddy and he can just be himself. Before, when we went out, he wouldn’t do the quirky little things he does, like flapping his hands – and then when we got home he’d just explode, because he’d held himself in so long. Now he is much more relaxed and confident.”

There’s certainly no stopping him at Dairyland: one minute he is charging around in a model car and the next he’s squirting water at his mates, before taking a tractor drive around the farm.

Meanwhile, the parents are taking a breather. “We can sit and have a cup of tea while they’re doing what they’re doing,” says Maria, “and talk about things and it takes a weight off our shoulders too. It’s nice to share things and say ‘it’s not just us’. Other parents often mean well, but they don’t really understand. But at the GOT group you don’t have to explain yourself.”

Long term benefitsWatching the young people having such as good time at Dairyland it is easy to see how much they enjoy days like this. But the scheme also has benefits that are longer term. Ella, for example, started the club when she was 11 years

old before joining the GOT to Act group, also run by Simon, that has put on plays and performances in some amazing places, including the Minack theatre, Australia and Belfast. Now 17, she has returned as one of three volunteer mentors

and is the group’s official photographer.

Charlotte has found school easier to cope with now that she has a firm friendship base. “Sometimes when she is feeling anxious at school she thinks, ‘But I’ve still got my friends at GOT group haven’t I?’”, says her mum. “She knows she’s got them

outside of school, so she feels less pressure in school.” And Tommy has learned to be comfortable with his ‘quirks’ (as he calls them) when he is out in the world. “Now he knows he’s not the only one to feel that way,” says Sally. “Before, Tommy never knew what friendship was, and to have so many friends here is so nice.”

Perhaps most encouragingly, many former GOT members are still in touch as adults. “We know that young people who attended the GOT group in the past have kept up the friendships they made in the group, and that is very rewarding, says Simon; “to see that it is having a long-term impact is brilliant.” To find out more about the GOT group in Cornwall please contact: simon.allison@sense.org.uk

Focus on young peopleFocus on young people

Getting out there grows!

Tommy:

“I like all the places we go, seeing all my friends.”

“Now he knows he’s not the only one to feel that way”

“This is their club.”

“Ruby has the same disability as me so we understand each other”

2322

Focus on young people

Sense’s Buddying Scheme in London aims to offer social opportunities and experiences to young people with disabilities who might otherwise be marginalised and

isolated. It brings together young people with volunteer buddies for both one-to-one and group activities. For many young disabled people their primary relationships may often have been with professional carers and their families – so to have a buddy who is just for them can bring a whole new dimension to the young person’s life.

Sense’s runs a range of buddying schemes, and is supporting around 65 young people in some of the most socially deprived and ethnically diverse parts of London. “Many of the families can be struggling in all sorts of ways” says Freesia Bassett who runs the buddying scheme for Hackney, Newham and Tower Hamlets.

Freesia’s group is currently made of 15 young people aged 14 – 25, along with their buddies and two members of staff, with a plan to support 30 young people each year. The young people have two sessions each month – one which is a one-to-one with their buddy, and the other is a group session where they can meet up and try different activities. These help the young people to get to know their local community and broaden their horizons.

The buddies, who are all volunteers, play a vital role. They come from a variety of backgrounds and their support means that the young people can try all sorts of new things, and make new connections, with a trusted and supportive

companion. Each volunteer is offered full support and training, and has full safeguarding checks before they are linked up with a young person who has interests in common with them. They sign up for a 12 month period and after that the volunteer may perhaps stay on, or perhaps keep in touch with the young person independently.

Research has shown, many young people with disabilities can experience feelings of low self-esteem and lack of confidence – and when Freesia first meets someone she often has to offer a lot of encouragement and reassurance.

“I find that when I first visit meet the young person and ask them what their interests are, it can be quite difficult, they don’t really know,” she says. “They may talk about shopping with their family for example, but the idea of going ice skating, doing a drama workshop or going to a club has never occurred to them. Social situations can be quite challenging for them, so to have a buddy there to support and encourage them and be that friendly face, is really helpful.”

Parents can also be wary. “I quite often meet parents who are very emotional and scared for the future of their young person,” she says. “For example, one of the young people who is 19 said she would like to do things without her mum (like most teenagers), and would like to go to Bubble Club which is an inclusive night club. Her mum was very anxious at first. So we took a lot of time to talk this over with her, explained how we train all our volunteers and reassured her about what the evening would involve and making sure it was safe. Her mum was quite tearful when her

daughter went off – ‘my little girl is going out clubbing’ she said – but her daughter returned having had a great time, and this has become a regular activity for her.”

“For these young people to be out and about doing things is a massive change for many of them,” says Freesia. “I don’t think that our volunteers always realise how much impact these two or three hours they give have on the life of the young person. It means that a young person who may have just been sitting at home, is getting out there and doing new things.”

A big thank you to charitable friends such as City Bridge Trust who are funding this important project in the boroughs of Tower Hamlets, Hackney and Newham.

For many young people with disabilities, quality one-on-one time can be hard to come by – which is where Sense’s Buddying Scheme comes in.

Jordan and Fai

Jordan and his buddy Fai have been getting together every couple of weeks since they met in February, when the group had a tennis session. They hit it off straightaway and since then they have done all sorts of things together and also with the group. They’ve been cycling, attended an autism-friendly film screening, travelled high across the Thames in a cable car and visited the City Farm. “We saw piglets feeding,” says Jordan, “and a goat jumped over a fence and escaped. We had to hide behind a bush!

“I get a bit fed up if I’m always at home,” he says. “Doing nothing, just going on my Play Station. I look forward to my Saturdays, going out, having a chat.”

It’s also been a new experience for Fai, who works as a software programmer during the week. “I always wanted to do some volunteering work and broaden my experience of life,” he says. “I’m quite a people person, and it’s something that makes me feel nice, helping people. We learn a lot from each other.”

Today Jordan and Fai are visiting Docklands to have a look around and do a bit of shopping. “I want to get a little present for my mum, to thank her for organising all this,” says Jordan. “She does a lot for me.”

2524

FriendshipFriendship

Kindred keyboard spiritsAsif and Ashton’s love of music brought them together, and now they are best mates.

A fter lunch, Asif and Ashton will often sit down together at the piano in the café

used by Sense Centre Streatley. Asif will pick out some tunes on the keyboard and sing along – Ten Green Bottles is a favourite – while Ashton looks on smiling.

They also start a call and response conversation of grunts and sounds that starts as musical, becomes banter and then descends into mutual hilarity, with them both guffawing and snorting with laughter. This shared sense of humour is one of the things that brings them together and they’ve been best friends for eight years now.

Asif and Ashton have different challenges, but work well as a team. Asif is blind and has autism, although his hearing and speech is good –and he also has an amazing memory for songs and tunes, amongst many other things. “He’ll remember someone from years’ ago by the sound of their voice, or even by their smell or the sound of their footsteps,” says

Karen Abrahams who is the Manager at Streatley. “Sometimes I’ll walk into a room and he’ll say ‘hello Karen, how are you?’ and I haven’t said a word.”

Ashton has cerebral palsy and severe epilepsy and is not able to speak, although he does make some sounds and vocalisations. “He very much likes music, especially certain songs,” says Karen, “and when he heard Asif playing for the first time he went over and sang and started to dance – and their friendship grew naturally from there.”

“They look out for each other,” she

says. “They think about each other when they are at home and their families are delighted about their friendship. When Ashton is away on holiday Asif asks when he will be back, and if Asif has been away Ashton can’t wait to come in and see him again. They clearly love each other as friends.”

Asif and Ashton don’t spend all their time together, and will attend different sessions throughout the week. This is partly because Asif has a strong sense of looking out for Ashton, but can become overloaded because of his autism and sometimes needs a break from their interaction. “It’s like any normal, healthy relationship,” says Karen, “you want to spend time with your friends but you also need time away from them.”

This might seem a very natural way for two people to be, but sadly

friendships like this are not that common amongst people with complex disabilities, especially if they have sight and hearing impairments. It can be hard enough for someone in this position to communicate with a sighted and hearing person, let alone someone who also has complex needs. This means that their strongest relationships will often be with the staff that support them, and with family members.

One of the ways that the staff at Streatley have tried to encourage friendships to develop is by individuals being in small consistent groups, where they have more time to get to know each other and build up trust. “For example, there are two young men in the education classroom,” says Karen,

“who have begun to link up and one of them signed ‘my friend’ recently.” Also, Asif and Ashton’s friendship has

offered a positive example and others have wanted to be part of it. “They are quite lively and it bounces off on the other students,” says Karen. “They see the friendship that they have and they want that for themselves too. It’s an instinctive thing.”

After the lunch break the two friends go on to their separate sessions, but meet up again later in the music room. Asif likes to choose music from the Echo device, and since Ashton is about to go home Asif says: “Alexa, Ashton is going home, play Twinkle Twinkle Little Star,” which is Ashton’s favourite tune. Then they hug before Ashton heads off.

They’ll meet up again tomorrow for more music, friendship and a lot of laughs.

To see a video of Asif and Ashton together visit:

https://blog.sense.org.uk/2019/06/great-tunes-bring-best-mates-together/#more-6842

About Sense Centre and College, Streatley

Sense Centre and College, Streatley offers a wide range of stimulating learning experiences to 26 individuals who have a wide range of physical and learning disabilities. It is based near Luton, and there are now plans to open an additional centre as the number of people attending has grown.

Six of the students are following educational programmes that will lead to qualifications in areas such as life skills, cookery, drama, English and maths. They also have enrichment activities such as travelling to a café for lunch, ordering what they want and going to the till to pay for it. 20 other individuals are following the Everyday Living Programme which offers all sorts of stimulating and sociable activities – both in the centre and out in the community.

“They are quite lively and it bounces off on the other students”

26

Friendship

Hello my old friendThanks to social media, old friends Allison and Kanhai were able to find each other again.

Allison and Kanhai have been friends for well over a decade now, and always

used live near to each other in Sense-supported houses. They both use British Sign Language to communicate and this shared language created a strong bond between them. They met up, ate together (especially lasagne!), had a laugh and on more than one occasion went on holiday together.

Unfortunately, Alison moved to a house further away from Kanhai and, with no fault on anyone’s part, they drifted apart. Slowly, the lunches happened less and less and conversations between them were increasingly rare. Until one day, it all stopped – which was a real shame for them. Friends don’t grow on trees, especially if you have vision and hearing impairments.

Meanwhile, separately, Alison and Kanhai’s support workers were starting to help each of them to use social media, including setting up their own Facebook pages. This had to be handled carefully so that Alison and Kanhai could be as independent as possible, but also be safe online and know where to turn if they needed help.

Soon after setting up their pages, they found each other again online

– and quickly learned how to send messages to one another before progressing onto video messaging. This meant that, even though there was

a distance between them, they could sign and chat to each other again – and their friendship bloomed again.

At the beginning of the year, Allison offered to cook for Kanhai and asked if he would like to come and visit her? Support and transport was arranged for Kanhai and finally in March, they sat down to a plate of Alison’s signature lasagne (of course) and a jolly good chat. Since then, they have met up regularly, going on pub trips, exploring the local area and making plans to visit Centre Parcs. And Kanhai has offered to cook for Allison when she comes to visit him (no pressure Kanhai!)

They are also both members of the Sense Service User Reference Group (SURG) now. This brings together people that Sense supports to discuss issues and concerns they may have, and what they would like to see happen in the future.

It just goes to show how useful social media can be. And regardless of what the future holds, Allison and Kanhai can rest assured that they can always stay in touch.

“Slowly, the conversations between them were increasingly rare.”

“It just goes to show how useful social media can be.”

27

Usher syndrome

Usher rehabilitation courseEarlier this year, a two day Rehabilitation and Socialisation course was held for people with Usher who were either newly diagnosed or who just wanted to refresh their skills.

The sessions included various topics including in-depth information about Usher syndrome, communication tactics, mobility training, access to information, the Care Act, learning to use Braille and social haptic communication. The group had an

opportunity to share their experiences with others and network.

If you want more information or are interested in attending a course in the near future, please do contact us at usher@sense.org.uk

Emma (centre) with some of the young people who attended the conference.

An eye opener in IndonesiaEmma Boswell, Sense’s Usher Service Manager, describes her visit to Indonesia in April to share her experience of deafblindness and Usher syndrome with Indonesian people with deafblindness, their families, interpreters, support workers and government officials in Jakarta and Yogyakarta.

“I delivered a rehabilitation and communication conference aimed at a group of people living across Indonesia with many types of deafblindness. This was quite challenging because the people at the conference had never met before and used a vast range of communication methods, but I was pleased how this went.

What I discovered was that many of the people living with deafblindness in Indonesia believe that they are the only

person in the world with this condition. The isolation faced by people is truly terrible because Indonesia is made up of 17,000 islands and has a total population of over 250 million people. There is no Government register of people with deafblindness in Indonesia – in fact the disability is not even recognised.

Access is difficult for many people in Indonesia as the environment is very challenging, especially the lack of

footpaths and open streams running through Jakarta.

People with deafblindness do not get access to communication guides and interpreters as they do here in the UK. There are no equivalent laws to the UK’s Care Act or Equality Act. Deafblindness is not recognised by the Government as a discrete disability.

Over 90 per cent of the population in Indonesia are Muslim, but access to

this and the other religions is not made accessible to deaf, blind and deafblind people. I also learned that Indonesia is a very tactile-adverse culture where touch and social haptics are not socially acceptable. This is an obvious barrier to the obvious communication needs of people with deafblindness..

I was also invited into the presidential palace in Jakarta to talk specifically about deafblindness to close advisors of president Joko Widodo.

There was heat, madness and long hours! …but the overall experience was an eye opener to the amount of work that needs to be done for the deafblind population of Indonesia.”

If you would like to hear more about the trip, please get in touch. emma.boswell@sense.org.uk

“There was heat, madness and long hours!”

28

Arts, Sports and Wellbeing Arts, Sports and Wellbeing

29

Making Sense of Yoga

You might think that yoga is only something that only very fit, flexible people can do. But in fact, it can be

highly beneficial to people who are facing all sorts of challenges – including complex disabilities. Regular yoga practice can improve your strength, balance and flexibility; encourage a feeling of calm and being ‘in the moment’ – and is sociable and makes you feel good.

Sense runs inclusive yoga classes across the country, in partnership with experienced yoga teachers, to people of all ages with sensory impairments and complex disabilities. Each class is adapted to the needs of the individuals attending and this has proved to be a very popular and beneficial activity.

Recently at TouchBase South East, Kevin, Nicola, Noreen, Oliwia, Marcos, Ali and Yashil and their support workers were joined by yoga teacher Richard, who has a lot of experience in running these sessions for Sense. As they sat in a circle each person was welcomed by the group to the session. Then Richard led a series of warm-up exercises which focused on the joints, including neck, shoulders, back, hips, wrists, ankles. He also encouraged each person to be aware of their breathing, and to make their breathing flow with the exercises.

After this, Richard guided the group in creating different yoga shapes or ‘poses,’ including forward bends, back bends, twists and balancing exercises. Kevin was able do some of these exercises standing up and the others did these sitting down, with the help of their support worker. Some of these were quite tricky and there were a few groans as well as laughter!

For the final part of the session Richard encouraged everyone to gently relax, to focus on their breathing and be aware of their thoughts and feelings. He then thanked everyone for sharing their practice with him, bringing his palms together and saying “Namaste” which is how yoga sessions are always brought to an end.

To find out moreSense is producing a resource – Making Sense of Yoga – which offers tips for practicing yoga teachers, who wish to make their classes more inclusive for participants with sensory impairments and complex disabilities. To find out more about this, and the inclusive yoga classes Sense runs, visit www.sense.org.uk/get-support/arts-sport-and-wellbeing or contact us at sense.active@sense.org.uk

“Regular yoga practice can improve your strength, balance and flexibility”

3130

Section headSection head Arts, Sport and WellbeingArts, Sport and Wellbeing

Sense Arts has been exploring imaginative ways of supporting people with complex disabilities to be dance leaders in the future. To develop this, a new partnership between Sense, pioneering disabled choreographer Lisa Simpson, and dancers from InterACTION are creating a new dance landscape.

O ne of the guiding principles of Lisa Simpson’s dance sessions is that there is equality between everyone taking part: between instructors and students,

disabled and non-disabled. A dance session is co-created between everyone who is taking part, where each person is part of a bigger whole.

Lisa, who has cerebral palsy and no verbal communication, is deeply committed to creating opportunities for people with disabilities to dance and choreograph. She first fell in love with dance in 1995 when she met dancer Adam Benjamin who recognised that, with the right support, she

had the potential to be a talented choreographer. Fast forward 25 years and Lisa is now Director of the Lisa Simpson Inclusive Dance Limited which runs workshops and courses around the UK. She has also developed the Simpson Board which has a wide range of symbols and directions which enable her to choreograph the dance of others.

“When I was at school I used to dream that I would physically be able to dance,” says Lisa. “The reason I set up a company was to help other disabled people who haven’t had the opportunity to discover their true potential. I find it very fulfilling.” She uses a transparent alphabet board to communicate by eye pointing at the letters she wants, which

her support worker Sharon then reads out.

Recently she and Adam ran workshops for people with complex disabilities at Sense TouchBase Pears in Birmingham, with support from Suzanne and Becca who are freelance dance

instructors who have worked with people from Sense for a number of years. Leading by example, the first thing Lisa does is to be helped out

of her wheelchair and onto the floor so that she can dance and interact closely with the other people on the course. She stretches and rolls across the floor, turning on her side and moving her leg to the music. Then she hooks her arm around Adam’s leg and they create shapes that move and change between them.

First to arrive for the session is Jessie. At first he doesn’t seem keen to join in, lying curled up on a cushion with his t-shirt pulled over his head. Adam mirrors this by lying on the cushion next to him and Lisa gently massages his feet. Suddenly Jessie pulls of his t-shirt and reaches out and takes Brian’s hand - then waves his arms excitedly as Brian pulls him around the room on the cushion.

Fozia has also joined the group and she laughs with excitement to see what is happening. She reaches out for the hand, and then the knee, of Becca and they develop a to-and-fro rocking movement between them, which Lisa responds to in her dance. The dancers have become like one organism – rolling, twisting, interacting, reflecting, and creating a new dance language.

“There was a lovely back and forwards in this session,” says Adam, “it’s really about creating physical movements in time and space. When you have a profound disability most choices about your own movement and everything around you is out of your hands – so being able to choose how you move is very liberating and empowering.”

After this, Caroline joins the dancers, who welcome her by tapping on the floor and snapping their fingers. “Yeah!” says Caroline and smiles. She seems very comfortable with taking part and this session has a quieter, more gentle feel to it. She strokes Adam’s neck and shoulders and then climbs onto his back. Adam sinks to the floor and they move slowly across the floor, with Caroline on his back as the group move around them, like a constantly evolving sculpture.

Then, after half an hour she decides to finish, and moves away from the others, who applaud her for making a choice and doing what she wants.

“These sessions have been a learning experience for all of us,” says Lisa, and Suzanne seconds this. “We have not worked in this way before,” she says. “It’s been a massive learning curve and given us lots to think about in terms of doing things in a different way in the future.”

She stretches and rolls across the floor

The dancers have become like one organism – rolling, interacting, and creating a new language

33

Celebration!

32

Celebration!

Happy Birthday Ruth!

The staff at TouchBase

South East had done a

brilliant job. The bunting

and streamers had all been put

out, the drinks were poured and

Fernando was strumming his

guitar. Everyone had made their

way out to the sensory garden

and it looked (and smelled)

lovely. Now all it needed was for

Ruth to cut her cake, everyone

to sing Happy Birthday and the

party could begin!

As the music kicked in

everyone got up to dance, and

Nicola, Mandy and Hazel started

a conga around the garden.

Marcos and Kevin were sporting

some very fancy hats and

Fernando got up to show some

very funky moves. Later Hazel

treated everyone to a karaoke

performance of her favourite

Spice girl songs and everyone

sang along. What a nice birthday!

Fernando throws some shapes

Jonathon and Kevin take to the floor

Kevin and Marcos chill out

Hazel enters Spice Girl heaven

That cake’s for me!

Nicola, Mandy and Hazel join the conga

35

Sense holidays

34

Sense holidays

Shaanvir Rehal, Sense’s Stories Advisor, describes how Jack volunteered to go on a Sense holiday – and made Jai’s day!

There is nothing quite like the great British countryside. Fresh air, green grass and generous

quantities of tea make the UK holiday experience something quite special. It is more than flip flops, food and factor 50. It’s a time to take a breather and focus on our physical, emotional and mental wellbeing.

But that’s where volunteer Jack is a bit special. He decided to use his holiday to focus on the

wellbeing of others – and he says that he wouldn’t trade the experience for all the tea in Yorkshire.

Deciding to support someone on holiday who is deafblind or has complex disabilities wasn’t something Jack took lightly – and he had his nervous moments before making his application. ‘What if I can’t do this, what if something goes wrong?’ he wondered, but his desire to help people held strong. Little did he know the true impact of his decision.

Jack studied history at university and works in a museum where he meets all sorts of visitors. He’s fascinated by the children’s natural curiosity when they visit and spends most of his time working with them. With children, he knows that actions speak louder than words.

This experience gave him a good foundation for developing relationships with the people who Sense supports – but the rest of it was all new to him as he had never worked with people who are deafblind or have complex disabilities before.

He sailed through the training that all Sense volunteers undertake, and had all his questions answered by the Sense Holiday’s and Short Breaks Team who were with him every step of the way.

Meanwhile, a young man called Jai was preparing to go on his first Sense Holiday. Jai, 12, is an incredible young man who has been supported by Sense ever since he was diagnosed with Alstrom syndrome in 2015. And with his love of football, police tv shows and spending time with the ‘guys’, Jack was a clear choice to be paired up with him.

Jai hasn’t had an easy time. He has Alstrom Syndrome which is one of the rarest genetic diseases in the world with a range of difficult symptoms, including: heart failure, light sensitivity, learning disabilities, hearing loss, obesity and Type 2 Diabetes.

It’s also been a tough journey for his mum, Pam, to raise him, and also care for her father. There are members of her close family and friends that she can rely on for support, but mostly she is running the show by herself.

Jack and Jai meet upNaturally, it takes a little while for people to feel

comfortable in each other’s company when they first meet up, but it didn’t take long when Jai and Jack met up on a Sense Holiday in 2016.

There are always lots of amazing activities to try, so the main challenge was trying to fit everything in! First off, was ice skating, with Jack calmly supporting Jai as he glided across the ice – with lots of football chat in-between.

One afternoon, while the rest of the group chilled out, Jai, Jack and two others decided to play mini golf. Jai immediately got into the swing of things (pun intended) and scored a hole-in-one. Jack’s competitive nature did not get the better of him as they both celebrated!

For Jai, the holiday offered a much-needed change from his usual life – which is often punctuated by hospital visits and health issues. For once, his only aim was to socialise and have fun – and to do that with a positive male role model like Jack was an added bonus.

It was also great for Jack who was spending his time in a caring environment where he could develop his communication skills, which was something he could then use in his personal and professional life.

As for Pam, she was finally able to sleep. These few days gave her time to recharge her batteries and take some time out for herself. Caring for Jai, while she wouldn’t change it for the world, is a full time job, which she balances with also caring for her father. Jai being on a Sense Holiday gives Pam time to see friends, watch a movie or have a lie in. Things most people take for granted, she only gets once a year. It’s like Christmas in the summertime.

A tough break – and welcome newsLife became more difficult two years ago when

Pam noticed Jai was more lethargic and rapidly losing weight. After more time in the hospital, Jai received his second diagnosis. It was Leukaemia. This was a very tough time for the family but Jai and Pam fought on side by side.

With everything that was going on, a holiday was the last thing on their minds. But fortunately for them, the wheels were again in motion and the letter that Jai was to go on another Sense Holiday gave both of them some much needed good news. And it was about to get better.

Pam was not convinced, with everything that had happened, that Jai would remember Jack. Even Jack was unsure that Jai would remember him but he signed up anyway with the hope that they would be paired once again. After all the training, he got the news that he was indeed supporting Jai once again. When they met, there was a moment’s hesitation but only a moment. It was like no time had passed between them!

“For once, his only aim was to socialise and have fun”

A close shave

Shaanvir Rehal, who wrote this piece, is always happy to go the extra mile for Sense. After meeting Jai and Pam he made an unusual offer – to allow Jai to shave his head to raise money for Sense. Jai jumped at the chance of course and Shaanvir raised £625!

Jack and Jai’s holiday re-union

37

Out and about

36

Out and about

Amongst friends

Joe Coffin, who is deafblind, spoke at a Quaker Disability Equality Group event, at the Friends House in London on Sunday 26 May. He talked about his disability and how his Quaker meetings had supported him, and what he was able to contribute. He was one of a panel of four Quakers with different disabilities. Their presentations sparked lively discussions from an audience of about 35 people.

Saddle up

Alex and Simon, who live in supported living accommodation in Yaxley, near Peterborough have started using a local accessible stables which offers inclusive riding for all. Alex loved to ride when he was younger but changes in his mobility needs had previously meant this was not able to do this safely. Simon already has riding lessons and jumped at the chance to spend more time in the saddle!

London here we come! A group of people from Hastings Avenue in Margate recently had a fantastic day in London. Staff had prepared them for the bustle of the city by showing them pictures and videos of the tube, but even so they were amazed at how busy it was, and couldn’t believe the smells, vibrations and crowds of people rushing around. After a peaceful picnic lunch by the Thames, the group headed to the London Eye. From their pod they said they could see for miles and that everything looked tiny - even Buckingham Palace and double decker buses!

A memorable picture Michelle Willis and her parents have been involved with Sense for a long time – 48 years in fact! During that time, Michelle has created many lovely paintings, including a picture which was all about the people who live in different Sense houses and how they are connected. Long-term Sense supporter Lord Clifford from Chudleigh in Devon had always liked the picture so Michelle was supported to produce a framed print of it for him – and to thank her, he invited her to tea at Ugbrooke House!

Perseverance pays off Ricky Kimbell attends Sense College in Peterborough and, after a lot of determination on his part, is delighted to have started work. “I have applied for many jobs, and was successful in getting the role of Technical Engineering Support Volunteer with RNIB, he says. “At this job, I do testing and refurbishment of plextalk PTN1 DAISY players. This involves replacing faulty parts like CD drives and power adapter sockets. I enjoy it because the staff there are very helpful. I find things very accessible and the job is quite easy to do. This is a role that I find

very interesting and I would like to have extra hours or work an extra day.”

A group of hardy sailors from Sense in Peterborough have been braving all sorts of weather in accessible sailing boats on Grafham Water. Some people enjoyed the windy weather, with Emma giving the adventure a 12 out of 10 for the adrenaline rush! Others weren’t so keen, including Nazid, who said, “Thank you for the opportunity - but I don’t want to do it again.” Watch this space for many more water adventures!

It’s ok to be differentAt an event at Rotherham Town Hall called ‘Building Stronger Communities Together – It’s OK to be different’, a group from Sense Centre Coleridge Road gave a performance to the Mayor and Mayoress

– as well as councillors, social workers and members of other community groups. Everyone had a fantastic time and the individuals did so well during their performances.

My sensory space Wiola, a support worker at Tullibardine Road, Sheffield, works with Chris who mostly interacts with the world around him by touch and smell as well as hand-under-hand signing. She had an idea to make something sensory for his bedroom, and got really creative. She gathered all sorts of things including toys, musical instruments, art and craft items and created a sensory wall where Chris can feel different shapes and textures. She also created sensory curtains made of paper, pompoms, dry fruit and little bells which Chris can touch, smell, listen when he interacts with them. “Chris gets different sensory experiences spending quality time in his bedroom,” says Wiola, “and has his own space and feels secure and safe.”

3938

Q: How can I protect my child’s financial security in the future?

A: At Sense we know that many families are worried about what the future holds for their child. One of the things to consider is financial security and you might be thinking about the best way you can provide for your child after you’re gone. Sense has recently developed a new factsheet about Trusts which are a way to safeguard your child’s finances, and can provide you with peace of mind.

Q: What is a Trust?

A: A Trust is a way of looking after assets (savings, property, investments or other possessions) for someone else without them having to worry about it.

Q: Why should I think about a Trust?

A: There are two main reasons not to leave money directly to your child:

1. Means tested benefitsLeaving a gift directly to your child may mean means-tested benefits and support packages funded by local authorities are cut. A new application for benefits or support packages will then have to be made and there is no guarantee they will receive the same support they were previously entitled to.

2. Mental capacity If your child doesn’t have mental capacity to manage their own money, leaving a gift to them directly will mean someone has to apply to the Court of Protection for a Deputy Order to be able to look after their finances.

How can I get my maximum state pension?A Sense member recently contacted the Information Team to ask for advice on how to ensure that people who are not working due to their sensory loss can get their maximum state pension?

They were concerned that people were not aware that they could end up with a shortfall in their pension, due to a lack of National Insurance (NI) contributions.

The State Pension is a regular payment from the government that most people can claim when they reach State Pension age. Not everyone gets the same amount, and how much you get depends on your NI record.

You could have a gap in your NI record if you were not working and either claiming certain benefits, or if you were not claiming benefits at all.

Generally, you build up your record by getting NI credits or paying NI contributions.

People who are claiming ESA (Employment Support Allowance) or receiving Carers’ Allowance can apply for NI credits to top up their contributions. Unfortunately people who are on PIP (Personal Independence Allowance) cannot. There is more information about which benefits allow you to apply for NI credits here: www.gov.uk/national-insurance-credits/eligibility

If you cannot apply for NI credits, then the way you can address any NI gap is to make voluntary contributions. You can log onto the Gov.UK website here: www.gov.uk/voluntary-national-insurance-contributions to find out if you have a gap in your NI record. On here you can also check if you are eligible to make voluntary contributions. There are eligibility rules on who can make these contributions as it is dependent on age, work situation and which country you live in.

Anyone who is aged 50 or over can also get free advice on their pension from Pensionswise: www.pensionwise.gov.uk/en and the www.pensionsadvisoryservice.org.uk/

By using a Trust you can provide for your child without making an outright gift to them. This ensures their means-tested benefits and support packages are not lost, money is able to be spent quickly for their benefit and your child does not need to manage the money themselves.

Q: How do I set up a Trust?

A: Trusts are a specialist area of law so it is important to take advice from a professional with specialist experience. Make sure to ask about their qualifications in Trusts and what experience they have of this type of work. You should also ask for an estimate or agree a fixed fee for the work.

Q: Where can I find out more?

A: To request a copy of Sense’s new factsheet about Trusts please contact Sense Information and Advice by calling 0300 330 9256, emailing info@sense.org.uk or visit www.sense.org.uk

Sense Wills and Trusts SeminarIf you would like to find out more about Trusts and how you can provide for your child in the future, Sense is holding its first Wills and Trusts Seminar this Autumn. Philip Warford from Renaissance Legal will provide advice on how Wills and Trusts can protect your child and answer any questions you may have. When: 29 October 2019 10am-1pm Where: Sense, 101 Pentonville Road, London N1 9LG Sign up by emailing supporterservices@sense.org.uk or calling 0300 330 9257

Ramsgate artists find inspiration

Artworks by Mark King, Lorraine Nnando

and Sarah Richardson who live at

Newington Road in Ramsgate have been

shortlisted to enter a completion which

is being run by the Turner Contemporary

Gallery in Margate.

They all attend a local community arts

groups called ‘Inspirations’ and have been

working hard to create self-reflective pieces.

The Turner received a total of 1332 entries all

together, and only 106 have been selected to

go through to the next stage. So Mark, Lorraine

and Sarah have done brilliantly – huge

congratulations to all three!

Here’s the link to the website so that

you can see their work.

https://portfolioartcompetition.com/ Click on ‘Gallery’, then ‘Community’.

“A Trust is a way of looking after assets for someone else without them having to worry about it”

What do you need to know?

Information and advice Information and advice

Join Team Sense in the 2020 Virgin Money London MarathonSunday: 26th April 2020

For more details visit: www.sense.org.uk/londonmarathon E: eventsteam@sense.org.ukT: 0300 330 9257