InTouch
AUTUMN 2017
The magazine for families and supporters of United Response
The healing power of art How art is being used to help people with mental health needs express themselves
Out and about Giving young people the skills and confidence to travel independently
ALSO INSIDE
The work of United Response job coaches
A peek inside our Autism Hub in York
We’d love you to join our fundraising family!
Fundraising Pack
Join our fundraising family
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Fundraising can make the difference to your loved one that can’t be delivered through statutory funding. You could fundraise for United Response as a whole, a particular project, a specific service or area. We’ve created a new and improved fundraising pack to help you on your fundraising journey. Including lots of ideas and handy tips to make your fundraising a success, whatever you choose to do! Download your pack online now! www.unitedresponse.org.uk/ fundraisingpack
For more advice and support contact the fundraising team: fundraising@unitedresponse.org.uk
CONTENTS
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NEWS
There’s lots going on at United Response - from Special Olympic stars to Shakespearian actors, we’ve got them all! Read all about it here.
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YOUNG PEOPLE
A guide to travel training and the difference it can make to young people’s sense of independence.
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EMPLOYMENT
Job coaches are helping people who never thought they would work take their first steps in the right direction. We look at how their input is making a difference across the country.
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YOUR STORIES
What’s it like to grow up as the sibling of someone with a learning disability? One sister shares her honest and moving story.
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COMPLEX NEEDS
Managing the health needs of people with complex needs is being made easier in the North East with the introduction of One Page Health Profiles.
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MENTAL HEALTH
We visit our mental health service in Bognor to see how they’re using art therapeutically for people with mental health needs.
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AUTISM
Our Autism Hub in York is giving people with autism a specialised support environment to learn and make friends. Read all about what they’re up to.
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PROBLEM
What can you do to increase the social circle of the people you love? There’s no easy answer, but try some of our suggestions and let us know if they make a difference!
Editorial Welcome to a packed issue of In Touch. It’s been a busy year so far with plenty going on both within and outside the organisation. Theresa May and her Government kept us on our toes by calling a snap general election. This saw our UR Consultants, along with the press and campaigns team, produce an Easy News Manifesto Special in record time and relaunch our Every Vote Counts campaign to help get everyone involved and voting by removing the jargon and spin of the main political parties’ manifestos. We have information on how you can sign up to receive our award winning accessible news magazine, in time for the next issue, on page 6. We have continued to champion the importance of unlocking the employment potential of the people we support. Find out more about the work of our job coaches on page 10. In June we also held a working lunch event, celebrating the positive work of our specialist supported employment service in Trafford that was attended by Mayor of Great Manchester, Andy Burnham (see page 7). In the next issue, I look forward to outlining what we achieved by engaging with the Government at their party conference in October. On page 18 you can read about the therapeutic benefits of art and how finding a creative outlet has helped
improve mental wellbeing. We recognise the importance of being part of the wider community and we work in a number of ways to increase people’s confidence to engage in it. On page 9 you can read how our Richmond Outreach Team supported Eddie to travel with confidence around his local area. Then learn more about the innovative work of the Autism Hub in York on page 16/17, which is creating successful outcomes for each person involved. As you can see on the page opposite we have a new fundraising pack to help inspire people to join our fundraising family. I am already part of the fundraising family, as I cycled 100 miles through the streets of London and the hills of Surrey in the Prudential RideLondon in July, raising nearly £3,000 for United Response. I can highly recommend the event and if anyone is interested in joining me next year please contact the fundraising team (fundraising@ unitedresponse.org.uk) and secure a place for 2018. In the meantime, I hope you enjoy this issue of In Touch.
Tim Cooper Chief Executive
UNITED RESPONSE NEWS - THE FUN STUFF
Special Olympians in our Three people we support have won medals in this year’s Special Olympics! Congratulations to Sarah Davies, Cameron Long and William Scrope, who celebrated wins in bowling, tennis and swimming. The Special Olympics, which took place in Sheffield between 7-12 August, saw 2,600 athletes compete in the country’s largest disability multi-sport event this year. This is the 10th year the
games have been held in the UK. We caught up with one of the sporting champions, 24-year-old Sarah, who is supported in Ellesmere Port. Asked how she feels about her success, Sarah said “I want to be famous and inspire others to do well”. She took part in several events, coming fourth in the individual ten pin bowling, winning bronze in the team event, and gold in the doubles. Sarah is an experienced bowler, having gone to her local bowling club for the past 5-6 years. This is the third Special Olympics she’s taken part in. Sarah plans to continue her bowling in the future, and has Special Olympians (from left to right): Sarah, Cameron and William.
Macbeth wows audience in Devon ROC Creative, a dedicated arts project based in Paignton and part of United Response, put on an exceptional performance of Macbeth in May, via their two in-house theatre companies, Mardi Da! and Icicles. The show aimed to marry modern day stories to some of the themes from the famous play, proving that Shakespeare is still as relevant today as he was in the past. Debbie Perry, one of our staff at ROC Creative, tells us more: “This performance gave our actors the opportunity to perform Shakespeare using the original language and to work alongside Theatre Hub’s accomplished Shakespearean actors. The performance was a great success and far exceeded the audience’s expectations in terms of understanding and portrayal of the story, focus and professionalism. It was further enhanced by original
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recordings and live music by our resident Sound Alchemy group and props produced by the art groups. “It was obvious from the feedback that followed what an impact the experience had on those who took part. Pride, increased confidence and an enormous sense of achievement was realised by all. Mardi Da! And Icicles theatre groups will be taking the production out to local schools and other venues.”
IN TOUCH - AUTUMN 2017
midst! a busy schedule ahead of her. “She loves attending all these games, she’s really good at keeping busy,” says Carol Shepherd, Sarah’s support worker. “She’s got a gold Duke of Edinburgh at the end of this month as well, she’s got to trek up Snowdon for that!” At just 24 years of age, we expect she has many more years of sporting success to come!
Big Picnic in Bognor Regis
Our third annual picnic saw people in the community come together to enjoy cakes, games and music, while learning about local mental health services. There were stalls selling fabulous homemade crafts and fresh vegetables grown on our own allotment. There was also an art exhibition, showcasing work created at our art group for people with mental health needs. To top it all off, we were delighted to be joined by the Mayor of Bognor Regis.
Trish Fuller Trish is mum to 42-year-old Trevor, who is supported by United Response in West Sussex. What three words describe Trevor? Lovely, nice and friendly. How old was Trevor when he first started experiencing mental health issues? He was 20 when he was diagnosed with schizophrenia. It was a very difficult time. We didn’t know what to do. We knew something was wrong but we weren’t sure what it was so kept going to the doctor. But as he was an adult, he had to go himself. It took him walking out in front of a car going 50mph without even being aware of anything for him to get help. What have you found most difficult, as a mum, about having a son with mental health needs? Now, nothing – I don’t even think about it anymore. He’s so happy and well-looked after and his medication makes him ok. But at the start, it was very traumatic. We just didn’t understand anything about it. What are your happiest memories of Trevor? I have loads of happy memories. We go out every week, often to Brighton where we go to the arcades and get lunch together. We always have a good time. If you could go back in time, what advice would you give your younger self? I’d tell myself to go out and get as much knowledge as possible. When he went to hospital we had a really good doctor explain to us that having
schizophrenia was like having an extra chemical in the brain which makes everything you look at distorted, like looking through a funny mirror. And that makes things look scary, which is why it makes the person distressed. What makes the difference between good and bad support? There was a period a long time ago where Trevor temporarily ended up in a terrible place where the nurses pinned people down on the floor – it was like something out of a horror film. I kicked up a stink and got him straight out. Where he is now is an example of good support. They are always there for him, whether it’s helping him manage his money or go shopping, or arranging his annual holiday. How has United Response made a difference to Trevor’s life? It’s changed his life 100%. He looks after himself. But his support staff are there to give him gentle reminders. What might people be surprised to learn about Trevor? That he hasn’t got a bad bone in his body. There’s still a lot of misconception about people with schizophrenia being violent. If you were Prime Minister, what’s the first thing you’d do? I’d make sure support is always available near to where people’s families and friends are, so they don’t get sent away.
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UNITED RESPONSE NEWS - THE SERIOUS STUFF
Sometimes the smallest things make the biggest difference.
In this section, we share inspiring breakthroughs of people we support, and in this issue, the heartwarming story of Sally Hawker, supported at the Boot Shop in Easingwold. 49-year-old Sally Hawker is a very giggly, bubbly and fun woman who takes part in a weekly cooking group at the Boot Shop. For some time, she aced making sandwiches but lacked the confidence to try other things. Opening a tin was something that she felt particularly nervous about, for fear she wouldn’t be able to do it. Team manager Brian Timmins worked with Sally, who has a learning disability, by using graded support to develop a scheme to collaborate together to carry out the task. They started off by doing it in tandem – Sally would turn the top bit while Brian turned the bottom part of the tin, and he would say “your turn” and then “my turn,” chatting the whole way
through to make her feel at ease. They would carry on doing this together and each time, Brian would reduce the support until he was just holding the tin for security and Sally was opening it on her own. In about five weeks, Sally has gone from too worried and frightened of failing to use a tin opener, to completing the task with a big smile! This has really increased her self-esteem, and makes her feel better about trying out other new tasks. “Graded support is part of the Active Support model” says service manager Julia Richardson. “It’s about breaking it down and celebrating each step. This builds confidence and creates transferable skills. We often celebrate the big things that people do, yet it is often the smaller things that give people more control and are a real achievement. We don’t make a big fuss over them – but we should.”
Has your relative had a breakthrough recently that you’d like to share? Send it to anna.carter@ unitedresponse.org.uk 6
Is your relative news-savvy? The latest online issue of Easy News, our bimonthly accessible newspaper produced by people we support, is available now from www.unitedresponse.org.uk/ easy-news Easy News takes the most prominent headlines dominating the media outlets and translates them into jargon-free and easy to understand stories, helping people with learning disabilities to have a better understanding of politics, and national and world events. This issue includes the latest on Grenfell Tower, Brexit and the acid attacks in London. If your relative hasn’t yet read this awardwinning publication, they can sign up to receive it at: www.unitedresponse.org.uk/ easy-news
Your feedback matters United Response encourages feedback on everything we do, and we are always trying to improve the way we do things. If you have a comment, concern or complaint, you can tell us in the following ways: • • • • •
a one-to-one meeting/phone call with a staff member of your choice to the Chief Executive of United Response to your local Social Services, Health Authority, Local Government Ombudsman to the Care Quality Commission to the Supporting People Administrative Authority
And remember, you can always call our Head Office on 020 8246 5200 or our Chief Executive Hotline on 020 8254 3135.
IN TOUCH - AUTUMN 2017
Disability employment event a success United Response hosted an event on Friday 16th June to celebrate the positive work that is being carried out in Greater Manchester to help unlock the employment potential of the 65,000 people with learning disabilities living in the area. Hosted in Trafford, where our specialist Supported Employment service has
been working successfully for the last 14 years, the event was attended by the Mayor of Greater Manchester, Andy Burnham, as well as Kate Green MP, and representatives from the Department of Work and Pensions, The Work Company, Pluss, Shaw Trust, Remploy and the Centre for Social Justice. United Response’s Chief Executive, Tim Cooper, believes the event was a vital step in our long-standing quest to create a fairer playing field for disabled people in the employment market: “We need to be ambitious for people with a learning disability by starting with a presumption of their employability and then actively advertising the success of specialist supported employment services. This event has brought together the decision-makers from across Greater Manchester to address what practical actions will finally start to close the employment gap.”
Every Vote Counts campaign This election saw a huge turn-out of previously disenfranchised voters in the under 25 age bracket. We did our bit to empower another under-represented group to vote - people with learning disabilities - with the relaunch of our Every Vote Counts campaign.
The accessible campaign aimed to help people with learning disabilities understand politics and how it affects them, get registered to vote and understand the role of MPs and political parties. It also came with a supporter’s booklet to show staff how to get people thinking about voting and present information in an unbiased way. If your relative found our campaign useful, we’d love to hear about it!
Email everyvotecounts@ unitedresponse.org.uk with your experience.
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CHANGING LIVES FOR YOUNG PEOPLE
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Be creative Remembering where we are on a bus or train can be challenging. Use pictures or photographs to help your relative locate where they are and where they need to get off. You can also play eye spy, using local landmarks, allocating a clear action: such as ringing the bell when you see the church.
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T
he word ‘independence’ means many things for many people. When asking young people we support what it means to them, “travelling to and from se. places on my own” was a common respon
Travel training is a massive step towards supporting young people to be included and progress towards their life goals. It means they can go out in their community, attend local activities and find employment. Independence also has a positive impact on confidence and selfesteem. Learning to travel independently can be a massive step for anyone. It can be fun and exciting but it is not without its challenges. Some families we spoke to, although positive about travel training, are understandably worried about safety and potential risks on public transport. Safety is our top priority when it comes to travel training. At United Response we take positive risks to ensure that when encouraging independence we are always balancing what is important to and important for that person so we don’t curtail new activities.
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For anyone learning to travel independently or for anyone (including families) supporting someone to do so then please read a summary of our guide below to help you on your journey. Good luck!
Staying safe is the top priority. Write a list of ‘Do’s’ and Don’ts’ for when they are travelling. For example: Do they know where to get help if they need it? Don’t leave belongings unattended.
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Have an individualised plan This is about ensuring the trainer and your relative know their individual needs and goals. The individual plan should include a communication profile, positive risk assessment and a skills assessment as well as a travel plan (where you want to go and the steps to get you there).
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Take your time There’s no rush. Design your plan with key milestones but go at a pace you’re comfy with.
Use a Learning Log Review, learn and try again! Travel training is a process, not a one-off event. They will learn new things every time – try and capture what’s working and not working.
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Get a travel pass If carrying money around is something they don’t want to do then look at a local travel pass which they can just show the driver.
Travel training guide
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Keep safe
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Always have a plan B in place Sometimes buses do get diverted or just by accident we end up in the wrong place. Don’t panic! Before they set off, think about what they would do if they ended up at the wrong location. Would they be able to call someone? Or ask for help?
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Use technology There are so many apps and devices now to help you get out and about. Check out our top picks on the right...
IN TOUCH - AUTUMN 2017
Changing Places Toilet Finder The Changing Places Toilet Finder app, which can be used on Android devices and is free, lists all of the accessible toilets in the UK. Find out how far you are from one, how to get there, opening hours, how to open the door, whether it is normally locked and information regarding hoists and slings. For iOS and Android users, a similar alternative available is Toilet Finder.
Eddie is a bright and articulate young man who has a keen interest in politics and current affairs. He loves to take part in many activities in his local community and is employed at a local hospital. Eddie also has autism and found it challenging using public transport. He would often become anxious at the prospect of travelling alone as he did not know the different bus and train routes, what to do in an emergency situation or how other people would act around him. Because of these challenges, Eddie’s choice of activities in the community and his travel to work were limited by when he could travel with family, or when he could use his support hours. Eddie met the outreach team in Richmond who assessed his anxieties and discussed his goals with him. Together they were able to make a plan that would cover certain bus and train routes and would have staggered levels of support until Eddie felt confident enough to travel independently. On public transport there can be random events which cause
Uber taxis app The Uber taxi app allows you to select a suita ble vehicle. It gives you information about your vehicle, its arrival time and even the name of your driver. You can also view your route and estimate the fare before you travel. There are also options to share journey details, including the specific route and estimated time of arrival, with frien ds or family. Skype, Snapchat, WhatsApp, Facebook and Facebook Messenger They’re some of the most popular available and most well-known. However, I feel they’re worth mentioning. Using these apps can help people keep in touch or arrange to meet with friends and family. Snapchat also has a feature which allows you to take a selfie without holding your phone by using a gesture or voice control.
diversions or alterations to a journey. This was factored into Eddies travel training to allow him to experience the type of disruptions that may occur. Once the outreach team were sure that Eddie had gained enough experience in a range of situations, and Eddie felt confident enough in his own abilities, his travel training was complete. Since Eddie’s travel training he has grown in both confidence and self-esteem and is proud of what he has achieved. He is able to travel independently to work at a local hospital every week using the bus, and travel to and from activities in his community when he chooses.
Safeplaces App This free app automatically locates the nearest member registered Safe Place and directs you there step by step.
independently so that he can explore more, and further his love of politics by visiting the Houses of Parliament whenever he chooses. Eddie realises that this is another challenge to overcome but shares our view that anything is possible with the right support. The independence Eddie has achieved allows him to use his support hours to build his skills in other areas such as cooking and cleaning and to do activities he did not previously have time for.
When Eddie now uses public transport he likes to read the newspaper and keep up to date with what is happening in the political world. He is able to do this as he feels far more relaxed and comfortable on public transport and knows that if something goes wrong he is able to stay calm and make the appropriate adjustment to his journey. Eddie has learnt to use his local transport links, however he is ambitious and aims to travel throughout central London
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GETTING PEOPLE INTO WORK
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ne of United Response’s corporate priorities is to support people with disabilities and mental health needs to get into the workplace. But for a great deal of people we support, the first steps towards finding paid employment are actually the most daunting.
For many, the topic of work has never been discussed before. Can they work? Do they want to? Where do they start? What if it all goes wrong? For many of the family members reading this magazine, those same questions may have made the concept of their loved one having a job seem nothing more than wishful thinking. But it doesn’t have to be. Helen Lawrence has been working as a job coach with United Response for the last two years, after starting out as a support worker at our Community Network, a drop in centre in Folkestone. It is her belief that whilst finding paid work is always the ultimate end goal, the other benefits of work – even when voluntary – should never be downplayed. “Being included and having a reason to get up in the morning – that’s the motivation that makes working worthwhile for most of the people we support,” she explains. “These are people who have spent so much of their lives feeling excluded from doing the things everyone else does. To be out there in the community, doing something of value to people – that what it’s all about.”
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Much of Helen’s role involves using her initiative and imagination to carve out potential job opportunities from existing things going on in the community. Many of the people she works with have complex needs or have not had much – if any – experience in employment. Her aim in such cases is not to push something as daunting as a paid position in an external business, but rather to find opportunities within environments they are already comfortable in, where there are plenty of familiar faces to offer them support.
MAKING THE IMPOSSIBLE SEEM POSSIBLE One person who has found this approach beneficial is 40 year-old Ashley Wood. “Ashley had always been anxious about the idea of working,” says Helen. “She used to say things like ‘I could never do it!’ and ‘I wouldn’t be able to’. So I had a think and asked if she’d like to help me co-ordinate the monthly days out we run for the Community Network. She was interested, so now it is her job to research the trip and how much it will cost, look into minibus hire and fuel, organise the marketing posters, take bookings and answer any queries. On the day of the trips, she helps me with health and safety checks and handles the cash. It’s given her a huge confidence boost as now she knows she CAN do it.” Ashley’s favourite thing about her job is talking to the people who go about what parts they most enjoyed and what they want to do – market research to help inform future trips. “Doing this makes me feel important,” she says. “I’ve done things I never thought I could do and I want to do more now.”
All about
Job coac
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If you’d have asked me before if my daughter would ever be able to work, I’d probably have said ‘no’. But now she does. PARENT
IN TOUCH - AUTUMN 2017 Ashley’s mum, Carol, has also seen a big change in her daughter. “If you’d have asked me before if she’d ever be able to work, I’d probably have said ‘no’. She couldn’t go out on her own. But now she does. She’s not so anxious and getting work experience has given her so much confidence.” Helen is currently working on finding positions for up to 7 people at her most recent venture, the Donation Station. The pop-up enterprise runs out of an empty shop a few doors away from the Community Network. It works by taking in donations of
and then selling them back with a suggested ‘donation price’. “What’s great about the Donation Station is the way it is so communityfocused – helping the people we support who work there to meet new people, form connections and feel that sense of belonging they so want – while also teaching customer service and cash handling skills to those who have extra barriers to overcome, such as physical or communication difficulties. The money left after overheads goes straight back into future community events.” Maurice Chambers, works at the Donation Station each week.
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For more information about how United Response supports people into work, visit our website: unwanted items from the public, www.unitedresponse.org.uk
“Working here is good and I smile loads,” he says. “I like meeting different people. I’m happy.” As well as Helen, there are other Job Coaches employed in residential services by United Response, working in Nottingham, North Derbyshire and in North Somerset. Head of Employment, Ali Bishop, explains why having them in place can make such a difference to the people we support: “We recognised two years ago that although our support staff wanted to be able to support people more with employment, they were so tied-up in the day-to-day elements of support work that they didn’t always get the time to focus on it. We wanted to be able to offer them local experts, recruited from within and trained up, who were accessible and visible and most of all, positively reinforcing the concept that working was an option for people we support. Volunteering and ad hoc work experience are all vital first steps in the journey to work, and they can be the gateway into paid employment further down the line.” And it isn’t just people with learning disabilities who are benefiting from the extra support provided by our
job coaches. Finding and keeping meaningful employment can be just as intimidating and difficult for those with mental health needs, as Job Coach Rebecca Moore explains: “One of the people I’ve been most proud about helping find a job is David,” she says. “When he started being supported by United Response 7 years ago, his main ambition was to get a job. He’d worked before but had sadly lost his job due to a mental health breakdown. It is really, really important to him to be able to financially support himself and his wife without having to rely solely on benefits. But despite getting lots of different jobs over the years, in the NHS and banking, he was going from one zero-hour contract to another. Last year, we found him a two hour a week cleaning role in our area office, which helped him get used to the routine of having a regular job again. But we knew he needed something more substantial in the long-term.” David’s support package was two hours a week, which he used to get help carrying out job searches, submitting CVs and filling out applications. But if he got an interview that fell outside his commissioned hours, his support worker could not always go with him. And this is where Rebecca’s role really helped. “I got to know David so he felt comfortable with me,” she says. “We practiced interview skills and when he received a letter inviting him for an interview at Nottinghamshire County Council, he asked if I’d go along. I did, and he was so much less anxious and confident. And as a result, we were thrilled to find he got offered a job as a cleaner for 14 hours a week.” Now David’s self-esteem is growing by the day. His mental health has improved and he’s looking forward to developing his skills and moving onto full-time work in the future.
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YOUR STORIES
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rowing up in a large family can bring up all sorts of sibling rivalries. But when one of your siblings has a disability, the normal childhood screeches of ‘that’s not fair!’ are soon silenced by a more muted sense of stoicism. For sharing in the responsibility for caring for a brother or sister – often whilst still just a child yourself – can put a huge weight on little shoulders, no matter how much love ties them together. Here, we share a moving story about the highs and lows of growing up with a disabled sibling, from Sarah Ingram, whose muchcherished younger brother Andrew has been supported by United Response in Crawley for over 30 years.
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A sister’s story “Andrew has given us many gifts,” says Sarah, “And one of those is making us the close family we are today. He is gentle, sensitive and loving and, although he has Asperger’s and can find physical contact difficult, he loves to be given a hug by one of the family or to hold hands when out and about - testament to our closeness, I suppose.” Andrew was born when Sarah was just two years old. One of four children, she was the younger sister of two older brothers. She was five when she started to notice that Andrew wasn’t like everyone else. He didn’t talk, and didn’t walk until
he was about three and used to flap his hands a lot. “I still remember when the penny really dropped,” recalls Sarah. “We were at school (he was in the nursery class), and I was watching him in the playground through my classroom window. He was standing there on his own, oblivious as the other children ran around, laughing and playing. That memory has stayed with me all my life.” As realisation dawned, things at home began to change for Sarah and her two older brothers. They began to
IN TOUCH - AUTUMN 2017 feel an unspoken sense of responsibility towards Andrew, to the point where they rarely quarrelled for fear of upsetting him. A strong sense of protectiveness seeped into all aspects of her life as she grew up, as the need to fight off prejudice or ignorance from her contemporaries became fiercer. “People treated me differently because of Andrew.“ says Sarah. “It was difficult having friends over to our house. I had to grow up a lot faster. Back then you just didn’t see people like my brother out and about so people didn’t understand. Then, when I was 14, we had a debate in Biology as to whether pregnancies where the embryo was shown to have a disability should be terminated. That was tough – and even when I explained, no allowance was made as to how I would feel about the debate being held. I couldn’t find the words to explain there is a real value in a diverse society, that the act of caring for people with disabilities is part of what makes us human and some of the most exciting achievements and discoveries have been made by people who would not be classified as “normal” or motivated by the desire to help people overcome their limitations.”
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Andrew has given us many gifts. And one of those is making us the close family we are today. Sarah
As the years went on, and with little outside support available, Sarah’s mum became very inventive in finding new ways of helping Andrew develop. He suffered with bad anxiety, so she found a box in which he could ‘put’ all the things that were worrying or frightening him, and shut the lid to keep them locked away. She installed a rope ladder on a door frame so he could sit and swing, encouraged his pleasure in running (he took part in regional events) and took him to museums to nurture his growing passion for cars, transport and technology. “He was also a brilliant speller while I had dyslexia so he was able to help with my homework,” remembers Sarah. But despite the family’s dedication to their son, the pressure of caring for him began to take its toll. “I was the last of my siblings to move out when I was about 21,” says Sarah. “Over the next few years, it became harder for my parents – my mother particularly – and Andrew had started to notice. As his siblings, it was something we’d always worried about – what would happen to him when our parents became too old
or poorly to cope.” However, after much heart searching, Andrew was found a place in a supported living home run by United Response in Crawley, where he’s lived for the last 30 years. For Sarah, life started to go down a more traditional route – forging a career in public relations, getting married and becoming a mother herself. But no matter how much her own world grew, she and her two older brothers made sure there was always a place for Andrew right at the heart of it. For as she became a mother, so too did he become an uncle – and a much loved one at that. “He was very anxious about what he was expected to do when he found out I was having a baby,” says Sarah, “My mum explained it to him very creatively. She sat down with him and worked out a contract – he promised to be nice to her (his niece) and play with her and in return, when she got older she would look out for him! He liked this. When he first met my daughter he very formally introduced himself to her and shook her little hand. And from that day, while he may not always have been able to join in their games, he’s been a lovely uncle to all of my children.” Sadly, life hasn’t always been full of such happy times. When Andrew was 35, he lost his eldest brother, Roger, in a tragic car accident, and in recent years, his father also passed away. Dealing with grief is destabilising for anyone, but for Andrew, such huge changes have been especially hard to adjust to. “For Andrew, losing our brother so unexpectedly was like a break of trust – he’d always seen it as our role to look after him, and by dying my brother had broken that rule,” says Sarah. “United Response were an amazing support at this time. Andrew’s service manager came with him to the funeral and sat with him throughout the service - he even came back to the house afterwards and helped with the washing up. And when my father was ill, staff helped Andrew prepare and when he died, Mary Yeoman at Crawley again brought Andrew up to the funeral, stayed with him and then took him back. There are no words to say how grateful my family and I are for the way United Response has been there for Andrew. I’m not sure how we would have managed without them.”
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SPECIALIST AREA: COMPLEX NEEDS
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One Page Health Profiles
nited Response has a long history of supporting people with complex needs. Many of the people United Response support have chronic health conditions or physical disabilities alongside their learning disability diagnosis. Innovative techniques and tools have helped us empower people to be engaged in the day-to-day aspects of their life, but it is just as important in cases where health conditions are a factor to make sure we know what to do to keep them healthy and safe.
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In the last six months, we’ve been developing a new way of helping our staff support people to manage the health conditions of the people they support, called One Page Health Profiles. Currently being trialed in the North East, they aim to do two very important things: Give staff a medical summary at their fingertips about the most common health conditions experienced by the people they support and to prompt staff to consider how that health condition impacts each individual. Make sure people can have their health monitored and supported in a way that works with, and not against, the other things that are important for them to lead fulfilling lives. So what does this mean in practice? We caught up with Julia Casserly, our Divisional Director in the North East, to find out more
about the concept of One Page Health Profiles came from, and how she hopes they can make a difference: “Statistics show that people with complex needs face health inequalities compared to the rest of the population,” explains Julia, “We did some research in conjunction with the Tizard Centre and other service providers to find out how people were supported with their health – looking at everything from diet and exercise, to attendance at screening tests. What we found there was that there was a significant gap in opportunity for people with complex needs. We came up with the One Page Health Profiles as a way of trying to bridge that gap.” One Page Health Profiles aim to give staff the need-to-know medical information relating to the person they support’s health condition – including things
IN TOUCH - AUTUMN 2017
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Statistics show that people with complex needs face health inequalities compared to the rest of the population
like causes, symptoms and complications – alongside the more tailored aspects of how their condition affects them personally, and preferred ways of support. For example, a One Page Health Profile for someone with diabetes might define what diet choices work well for that person, where they prefer to have their blood glucose monitored and what specific signs and symptoms show their illness is not being controlled effectively. One person who has already felt the value of One Page Health profiles is team manager, Michael Green, from County Durham. He supports Neil, in his early thirties, who has complex needs and autism and lives with type 1 diabetes. “For support staff, there is a lot of paperwork that goes with each person we support – support plans, documents from external people involved in that person’s care, all kinds of things.” He explains: “So to have one document that spells out everything staff need to know about how to manage someone’s health condition is so useful – especially for instances when someone new comes in and needs to get up to
speed straight away. For Neil, we used the idea of the One Page Health Profiles to go one step further and created ‘Neil’s Care Plan for Insulin’, which explains in six easy steps exactly what staff need to do to support him safely. There are even pictures to show them exactly where to find everything. “In Neil’s case, the increased confidence and knowledge staff feel since using the One Page Health Profiles has contributed to his blood sugar levels being reduced. We have fortnightly meetings with the council and his parents and everyone is really pleased with how it’s going.” One Page Health Profiles have the potential to empower people we support and staff, who we hope will feel better equipped to advocate on their behalf when there are aspects of their health or their treatment plan that may need adapting. “We know doctors are the experts when it comes to diagnosing and understanding physical health issues,” says Julia, “But staff are also experts in a different way – they are the ones who go home after the doctor’s appointment and see how the person they support is affected by the decisions being made. They can see if a medication is causing side effects that are limiting that person’s enjoyment of life – and now they can feel empowered to speak up about asking for alternative options. It’s about working together with external people so we get a rounded picture of what each person we support needs – for happy health, and equally importantly, for a happy life.”
John Ockenden, from our Practice Development Team, talks about SPELL training for staff SPELL is an approach to supporting people with autism. It stands for Structure, Positive approaches and expectations, Empathy, Low Arousal and Links and it’s been developed by Professor Julie Beadle-Brown from the Tizard Centre at the University of Kent in Canterbury, and the National Autistic Society*. People on the autistic spectrum find many aspects of life really difficult: the SPELL framework helps staff focus on the vital things they need to get right if they are to help people reach their potential. This summer we’re sending six key personnel on a three day workshop at the Tizard Centre, where they will learn about how to implement SPELL in services. After that they will deliver training to staff teams in their locality: all six are experienced trainers who have themselves supported people on the autistic spectrum so they are well placed to help their colleagues implement the approach on an individual basis. They will also work together to develop the implementation of the SPELL framework everywhere it’s needed across the organisation. *More details about the SPELL framework can be found at www.autism.org.uk/spell
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UNDERSTANDING AUTISM
A budding hub of
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obert beams with pride as he makes his own sandwich, something that he’s never done before at home. He is in the kitchen at the Autism Hub in York, taking part in an activity where you bring in your packed lunch unmade. Next door, Phillip is focusing on a beautiful bookshelf he is making in the woodwork session, while Rachel tends to the vegetables in the large sensory garden. For the past few years, these people, who all have a dual diagnosis of autism and a learning disability, have been attending the innovative United Response service, the only specialised autism support in York of its kind. “Traditionally, people with autism attended whatever day provision was available, which worked to varying degrees,” says service manager Joe Smart. “Here we can really focus and shape the support to the person’s interests, challenges and sensory sensitivities. We steer away from grading autism as it’s so individualised, but instead look at the unique ways that autism affects each person and come up with creative ways for people to manage it themselves.” Since it’s genesis a year ago, the Hub has quickly grown to become a thriving centre of activity, attended by a total of 15 people, who are of very mixed ages and abilities. People go up to four times a week, and at any one time, some eight participants are present, with one staff member to every two people. This is relatively high compared to similar set-ups, where the ratio can be oneto-ten.
threatening or lead to sensory overload for someone with autism, so more muted, low-arousal colours such as pale pastel blues and greens have been used instead. There are no pictures hanging up, and the space is consciously peaceful and clutter-free.
Through activities such as gardening, baking, art and keep-fit, independent living skills are taught in a way that is fun and meaningful to the individual. In the group music sessions for example, people get to practise things like sharing instruments, turn taking and being part of a team. These are all transferable skills that carry over into all aspects of a person’s life.
Staff are constantly aware of even the subtlest factors, such as whether the person likes eye contact, or if they need their name stated before being addressed. Everything is done at the individual’s pace and it’s all about building predicted routine. Makaton, picture symbols and objects of reference are all utilised, and outcomes are measured using the “Spectrum Star,” created especially for autism. There are nine different points, including socially appropriate behaviour, health and wellbeing, and social interaction.
Every detail has been considered to make the space as autism-friendly as possible, from the “quiet room” and sensory equipment, to the layout of the tables and the paint on the walls. Colours like red can be perceived as
It was York council’s wider autism strategy that originally triggered the need for the Hub, and so they approached United Response to set it up. The future focus is on transition and employment, and linking with local schools
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IN TOUCH - AUTUMN 2017
potential and businesses. The Hub is run with involvement from the Tizard Centre – experts in autism, who have come in and trained staff in areas such as communication and active support, as well as carrying out observations, assessments of the space and providing input on how to make it work most effectively. As Joe tells us, “people have a safe, calm, predictable environment here with no pressure on them; if they get it wrong, it’s ok. A lot of people who attend have a history of ‘failure’ where the focus has tended to be on what’s gone wrong. We’re trying to focus on things going right, even if it’s just congratulating someone on participating in an activity. People experience ‘success’ every time they attend, and they decide what success means to them, rather than that being dictated by what we, or society, sees as meaningful or successful.”
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We steer away from grading autism as it’s so individualised, but instead look at the unique ways that autism affects each person and come up with creative ways for people to manage it themselves.
Rachel Rachel’s Level 1 certificate in Independent Working, which she has just received at the Hub, is proudly displayed on her bedroom wall. Rachel, who is in her early 30s, always had very high anxiety carrying out activities on her own and would constantly check she was doing things right. For the past month, she has been receiving one star on her chart for five minutes of independent work, and after ten such occasions, has been awarded the certificate. She is now working towards her Level 2 award, for ten minutes of working alone on ten occasions. Hub staff came up with the idea, which has really translated to Rachel’s life at home, as her mum can now have time to herself and Rachel has the new-found confidence to take on activities without having to constantly check she is doing a good job.
Phillip Phillip is a fun loving, smiley 38-year-old man who has been attending the Hub four days a week for the past nine months. As well as having a learning disability and autism, Phillip also has Down’s syndrome and schizophrenia. Before the Hub, Phillip would stay in bed until late morning, and he lacked motivation and confidence. But now he is up and ready to face the day on his own initiative; he has lost three stone in weight and does things he never did before, such as using his own iPad and getting a taxi independently to attend the Hub. “He’s just more in control and really confident in everything he does now,” says his supported living key worker Maria Reid. “We have really seen an improvement in how he engages, as well as his tolerance of people, and his sense of belonging. The Hub has given him a purpose and brought stability to his life.”
Joe Smart, service manager
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OVERCOMING BARRIERS WITH PEOPLE WITH MENTAL HEALTH NEEDS
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ying awake and struggling with sleep is something that Tony Lock is no stranger to, and many with mental health needs can relate to this all too familiar scenario. “Waking up in the early hours, my mind used to be all jumbled up,” he says. “I’d get paranoid and start over-thinking.”
But now, with the help of a United Response art group, Tony finally has a creative outlet for his early morning anxiety. “These days when I’m up at 4am, I no longer feel lonely and unsettled; I just get the pen out and start drawing. I’ve got my sketchpad and I get straight to it. It’s made a huge difference to my mental health.” The therapeutic benefits of art have long been documented, with creativity being known to improve mood, reduce depression and deepen connection with others. It has been proven to stimulate the
Express you
The healing power of brain and boost self-esteem, and there have been studies that show that creating and viewing artistic work can increase the ‘feel good’ neurotransmitter dopamine. Indeed, there are many examples from around United Response that demonstrate the power of creativity - from Postcards from the Edges to the annual exhibitions in Kent, which have been proudly displaying the work of the talented people we support. Now a new exhibition in Bognor Regis has been added to this growing hub of artistic expression, showcasing the work of people supported by our mental health outreach service there. Tony is one of a group of people supported at the service, who have seen firsthand the benefit art can have on wellbeing. For nearly a year, they have been unleashing their creativity at the twice-weekly sessions, using mediums as diverse as mosaic, patchwork, poetry and photography.
Service manager Vicky ArnellSmith says that the group has seen individuals who were previously difficult to engage become highly involved. “Art is a fantastic emotional outlet,” she explains. “It can take people’s minds off things and distract their thoughts away from the anxiety.” Robin Cooper, who has been using bright felt-tip pens to colour in a beautiful biro picture he originally drew as a teenager, agrees: “When you draw, it’s like something comes out of you; it’s very therapeutic and helps get rid of the negativity.” Having lived with mental health needs for most of his life, Steve Ryman says that the poetry he’s been working on at the service is an effective way of getting his emotions out on paper. “Being able to let what I’m feeling inside come out, rather than bottling it all up, that’s really helped me to relax. I forget for a time that I have a mental illness.” Community artist and former
ART AROUND
UNITED RESPONSE Just some of the projects that have been using art to engage people we support… Postcards from the Edges is a major creative project started in 2013, where people have been invited to submit a postcard expressing anything they like, from their hopes and fears, to frustration with stereotypes around disabilities and mental health needs. The project has resulted in over 500 submissions, a series of exhibitions around the country and a book. The Community Network in Cheriton is behind the annual Exhibition of Unusual Art, now in its tenth
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year. It brings together the work of a wide range of local residents, including people we support. “It means so much to them,” says community development co-ordinator Corrina Hearmon. “People are seen as artists, and not for their disability.” Spectrum: Art Line is the latest exhibition showcasing the work of talented artist Simon Partridge, who lives with schizophrenia and has been supported by United Response for over 20 years. “Art is extremely important to me,” he says. “It allows me to say things I wouldn’t be able to communicate otherwise.”
IN TOUCH - AUTUMN 2017
urself:
by Ben Harrison
f art
Our Housing expert, Ben Harrison, on taking fire safety seriously. Ensuring that the people we support have a safe, comfortable home is a key priority for the housing team. The recent events at Grenfell Tower in London provided a stark reminder about how important it is that we keep both the physical environment and our safety procedures under regular review.
support worker Victoria Hulatt, who facilitates the sessions, stresses that it’s a group that doesn’t focus on labels. “It’s not about what’s wrong with you; it’s about what you can actually do. That in itself is incredibly healing.” Another crucial benefit of the sessions is that they offer a peer support network, something that is vital considering that having mental health needs can render a person extremely socially isolated. “When you’re in a group with other people in the same boat as you, it just helps to know you’re not alone,” says Mark Whitlock, who has been living with depression for ten years. It’s the first time he has had the chance to be artistic since he left school, over forty years ago. “Everyone in the group is my friend,” adds Sophie Mayes, who has a diagnosis of generalised anxiety disorder. “I never had friends before coming here. I used to just sit indoors and
worry about things all the time and not do anything. Getting creative has helped me unwind and not think about my troubles so much. I’d be totally lost without this place.” For Steve, it’s one of the few spaces where he doesn’t feel scared. “I don’t feel safe at home or that comfortable walking around town on my own, but this is somewhere I can come and be surrounded by people that know what you’re going through, and don’t judge you for it.” Tony agrees: “It keeps you off the streets and gets you out the house. It’s something to wake up for and look forward to. A lot of the time when I’ve done a drawing, I don’t think it’s that good, but then Victoria is really encouraging and says it’s brilliant. Doing art makes all the difference to my life and gives me a great sense of achievement.”
We have asked landlords of the housing that people we support live in to confirm that they have had a recent property fire risk assessment (PFRA), carried out by a qualified and experienced fire safety consultant, and for a copy of the assessment to be given to us. When United Response is the landlord, we use a fire safety contractor called Millwood Servicing Ltd to carry out PFRAs and we always ensure that all recommendations that emerge from the PFRA that need to be implemented are done as a matter of priority. We review each PFRA every three years unless there is a significant change to either the building or the people who live there, in which case we review it sooner. We work with partner landlords to ensure that they do the same and will take appropriate action to ensure that people are safe. I hope this offers you reassurance that we do take this important issue very seriously. If there are any housing issues that you are particularly interested in and would like to know more about, I’d be happy to cover them in future columns so please get in touch at ben.harrison@ unitedresponse.org.uk
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PROBLEM UNITED RESPONSE NEWS - THE FUN STUFF
My son is in his late thirties and lives a very solitary life. He lives on his own, and although that’s a big achievement for him, it feels like being more independent has actually left him feeling a little lonely. He lives down a fairly quiet street and doesn’t really know his neighbours. He’s only lived there for a few months. We visit every week but I so want him to fill his days with more than just watching TV. How can I help him increase his social life? Paula, Manchester
This is a common problem for all of those involved in the lives of people with disabilities – staff and families alike. Moving to a new area can be difficult for anyone, but for people with learning disabilities, forming friendships with new people can be especially challenging. Research shows that loneliness and social isolation both damage people’s health. Not having others involved in our lives and not being involved in the lives of others is harmful whether people complain they are lonely or not. There are lots of reasons why people with disabilities can find it harder than others to make and sustain relationships. There may be communication difficulties, they may have to overcome prejudice and stigma, they may be used to being segregated...the list goes on. There are also lots of reasons why other people may find it difficult to develop relationships with someone with a disability – from fears about how to behave around them, to not knowing how to communicate or simply being wary because of the way they may look or act differently.
other people are doing and offer practical help – you could support him to take out the bins or take in parcels. He could be encouraged to care about the place he lives by sweeping up leaves or picking up litter and smiling and saying hello to people who pass him.
2. Join what’s already there Find out what’s already going on to bring people together – coffee mornings, community centres, faith groups etc. Talk to the people who organise these things and see if they think it is something your son could join in with.
3. Start something new Create an event that you can ask lots of people to get involved in. Make sure there are lots of roles so there can be small jobs for everyone – don’t do all the organising yourself. If you’d like to know more about what you could do to support your family member to make new community connections, ask for a copy of our leaflet, ‘Working with Communities’ by emailing ollie.rowan@unitedresponse. org.uk. It includes our ‘Fifty things you can do right now’ guide, helping you to think differently about what you could do to get more involved with the community and the people who live in it. If you’d prefer to view it online, go to www.unitedresponse.org.uk/communities
But there is stuff that we have tried that might help. We’ve found it isn’t always an easy-fix, but with the right mindset, it can make a difference. Why not give some of these ideas a go?
1. Be a good neighbour Instigate conversations with the neighbours with your son present and talk positively about him, and what he can do and what his interests are. Keep an eye out for what
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Working with
Working with Communities Creating opportu nities for the peo ple we suppor
t
Our vision is a society where all people are equal partic ipants and have to the same right access as everyone else. s and opportunities
This means peopl e enjoying the things of life, good and communities in having roles in their which they are recognised and valued for what they have to offer. People we suppo rt can’t enjoy such a life if it’s spent only in services. We need to ensur that the work e we do providing a service doesn’t conta in people’s lives there. Making new friend s and building relationships in a community or local neighbourhood is people now than more difficult for many it used to be. Our parents and grandparents gathered together more often, halls, in faith group for example at dance Today fewer peopl s or at football matches. and while many e meet in faith groups, still enjoy dancin football, a lot g and of people only watch it at home on televis ion. We now spend more of our leisure time internet or watch indoors, absorbed in the ing television. go out, it’s often When we do only to do the shopping. In many places , industries once generations of employed local people who built associations together around sport and other leisure activities. Today, family and working life is very differe nt. People are living longer and many more of us are living alone.
Time and time again people we support tell us that deve loping relationships is what’s important to themmost
Communi