InTouch - Summer 2016 by United Response

InTouch

SUMMER 2016

The magazine for families and supporters of United Response

Family reunited after 74 years Bridging the disability employment gap

Kent service awarded â&#x20AC;&#x2DC;outstandingâ&#x20AC;&#x2122; CQC rating

CONTENTS

e c n e r e f f i d a e Mak with a cuppa

NEWS

Find out what’s going on around United Response.

YOUNG PEOPLE

The importance of planning early for young people’s futures.

EMPLOYMENT

People share their success stories.

A family reunited after 74 years.

Hold a tea morning with friends and raise money for people with disabilities and mental health needs. Register and get your free 4tea pack at:

www.unitedresponse.org.uk/4tea-morning

Have fun and raise money too! 1

Pick a date in 2016 July or August

Invite your friends

Put the kettle on

Ask them to make a donation

Can’t hold a 4tea morning? You can still make a donation to United Response and support people in the community. Donate online: www.unitedresponse.org.uk/4tea-morning

YOUR STORIES

COMPLEX NEEDS

One mum shares her story about how we are supporting her son to live a full and rewarding life.

AUTISM

How United Response uses different approaches when supporting people with autism.

MENTAL HEALTH

We talk to one man and his sister about how the right support makes it possible to live independently with schizophrenia.

OUR STAFF

Two of our brightest sparks tell us why they love working for United Response.

GETTING THINGS RIGHT

Our Maidstone service gets our first 5 star CQC rating!

ADVICE

4tea

For more information, call 0208 246 5200 5208 or email events@unitedresponse.org.uk

What to do if your relative experiences bullying.

Editorial School’s out for summer – and parliament is in recess. MPs have gone back to their constituencies and – Brexit notwithstanding – much of policy is on hold. But that doesn’t mean that the many issues that too many disabled people face every day have gone away. Nor does it mean that the work stops; we – alongside others in our sector – are still working hard to influence policy and campaigning to make things better for disabled people. Last autumn, our #makeworkareality fringe events sought to raise awareness of what needs to change to see more people with learning disabilities in paid jobs. Since then, we have been engaging directly with MPs to highlight the importance of closing not just the overall disability employment gap (which sees 47% of disabled people in work compared to 80% of the population as a whole) but also the lesser known and even larger gap which sees only 6.8% of people with learning disabilities (15% for people with autism) in paid work. This included supplying written evidence to the Work and Pensions Select Committee which resulted in us being asked to give oral evidence. Go to pages 10-11 to read how working has made a huge difference to two of the people we support. We’ve also been engaging with officials at Department of Work and Pensions and Department of Communities and Local Government to raise awareness of the importance of ensuring that supported housing remains exempt from the cap on housing benefit that will be applied to the social housing sector. The delay in creating a long term framework is the biggest problem, both creating a huge amount of uncertainty about existing services and preventing new housing being developed. This not

only prevents disabled people – who are already disproportionally affected by the shortage of housing - from getting the housing they need – but also undermines the delivery of the Transforming Care agenda in enabling people to move out of Assessment and Treatment Units and into the community. Alongside others, we are keen to work with Government to create a system that provides value for money and the flexibility to provide the housing that disabled people need to live as independently as possible. Elsewhere, we’ve been tackling some of the critical issues facing the social care sector as a whole - none bigger than the potential crisis created by the National Living Wage. Whilst we absolutely welcome the National Living Wage in rewarding our staff for the vital work they do, we in turn as a provider must be properly funded to be able to pay it. Over the last five years of cuts to local authorities’ finances, we have managed to adapt to these challenges through savings and efficiencies. But the cuts are set to continue. To lobby on this critical issue, we have joined with other organisations to create LD Voices, a unique and historic coalition of voluntary and private sector providers working together and representing 20% of national learning disability provision. We know that good social care is preventative and saves money. And so we are asking Government to act now to ensure that the sector receives the funding that it needs to be able to keep providing the vital and life changing care that the people we support rely on. We’ll continue to engage on all these issues throughout and beyond the summer.

Tim Cooper Chief Executive

UNITED RESPONSE NEWS - THE FUN STUFF

IN TOUCH - SUMMER 2016

Dan’s Marathon triumph! Dan Wren was one of 39,000 runners who crossed the finish line in this year’s London Marathon. What’s more remarkable is that he was one of only 32 blind or partially sighted people to achieve this incredible feat.

However, he needed a running buddy to support him, and that’s where Lindsey Simmonds stepped in. A keen runner herself, Lindsey works in the head office at United Response, and being asked to be Dan’s running buddy was just the challenge she was looking for.

“I’d been running for quite a few years and had got a bit bored with training on my own. Having a buddy motivates you to get out, as you don’t want to let that person down,” says Lindsey. Before the big day, the pair trained several times a week, running side

39-year-old Londoner Dan is a regular at United Response’s Garden Gnomes project and loves being busy. He is a very determined man with bundles of energy.

by side, connected by a rope. Using verbal commands to support Dan during their runs, Lindsey also came up with a training programme as well as advising Dan on his diet. “I can’t stress how grateful the whole family is to Lindsey for all her effort,” says Dan’s mum Sue. “She is so patient and made it fun for him.” “On the morning of the run I felt nervous but good inside,” Dan remembers. “During the race, the sound of the music and crowds kept me going, as well as having Lindsey by my side. I met my family afterwards, and they gave me a hug and said ‘well done!’ They were very proud of me.”

“Having a learning disability and macular dystrophy, which means he has very little vision, has never held him back,” says his mum Sue. “At the age of 19, he decided he wanted to run a Marathon.”

Running champions: Lindsey and Dan at the finish line

Welcome to our new ROC families! United Response’s mental health services on the south coast held their 8th Picnic in the Park event in August. The event aimed to remove the stigma associated with mental health, and to highlight the support available to people who may be finding it difficult to access the right support. Area manager Mary Doran said the day was a big success: “This event gave us the chance to link up with our partner organisations in the spirit of co-production and get people from all walks of life together to have fun in a relaxed environment.”

United Response is delighted to have joined forces with ROC, who have an excellent track record in providing person-centred support to people with learning disabilities in Devon and Cornwall.

ROC has a varied fundraising event programme, one of which is their annual 5K, this year held on a beautiful June summer’s evening at Lemon Quay in Truro. Over 500 runners took part, all with a mixture of abilities, looking very impressive at the start in their bright green ROC t-shirts. One runner was Gary Richards, Practice Lead from one of our Cornwall services, who came 2nd overall! Gary was part of the United Response team of six who ran - the others were Jane Griffiths, Sue Bartlett, Kim Griffiths, Henri Tucker and Ian Staley. Well done to you all!

Eileen and Duncan are parents of Anna, a 38-year-old woman whom United Response provides with 24 hour support in her own bungalow in Penzance. How would you describe Anna? Always laughing and very loving. She’s also very active and likes exploring her local community. Does Anna ever surprise you with things she does? Anna is non-verbal but continually surprises us. For example, Anna now tells us when she wants to go to bed by pulling back her bed covers, and when she wants a cup of tea she will go and stand by the kettle! What do you find most difficult about being the parent of a child with disabilities? I worry that she is being properly cared for and that she will continue to be cared for after we’ve gone. Changeovers in staff can also be difficult until Anna and the support worker learn to understand each other. What last made you smile? The other evening when we had a lovely spontaneous visit from Anna for a cuppa and giggles! What last made you really angry? We were angry about the unfair and incomplete financial assessment made by our local council, which as a result took 25% of Anna’s income to pay towards her care, vastly impoverishing her life. They administered this by cutting the payments to her provider. Another thing that makes us angry is the myth that the general public and some professionals have that Anna is a drain on resources, without recognising her value and contribution.

What are your happiest memories of Anna? Two that shine out are the day she was born and her 30th birthday when we went body boarding! If you could go back in time, what advice would you give your younger self? Firstly I would ask the health professionals to have made our lives a bit easier by helping us to fight for Anna’s right to care. And secondly I’d recognise the importance of having support from your family. What makes the difference between good and bad support? Having a support team that see and accept Anna for who she is, who don’t overlook her because of her inability to speak, who will watch and listen to Anna’s signs of communication, and who don’t come with pre-conceived ideas - these all make for great support! How has United Response’s support made a difference to Anna’s life? Their support has turned Anna’s life around. She is more settled - she will sit to eat and relax to watch TV, something she didn’t do before, and she can live in her own home. A lovely vision I have is of seeing two people walking down the road, who looked like two friends walking. Then I realised it was Anna and her support worker, and it made me smile.

UNITED RESPONSE NEWS - THE SERIOUS STUFF

IN TOUCH - SUMMER 2016

Have you received your 2016 Satisfaction Survey? Sometimes the smallest things make the biggest difference.

This is the third year running that we have undertaken a central satisfaction survey across the organisation asking for feedback from the people we support, their families, friends and professionals in their life. Each year we listen to comments about the format of the surveys and update them if anything needs changing or adding. We have piloted this year’s updated survey with our North East Quality Checkers to make sure it is fit for purpose.

In this new section, we share inspiring breakthrough stories of people we support, starting with Steven Robson who is supported in Newcastle…. Sitting at the beach on a hot summers’ day, Steven watched as support worker Sarah enjoyed a refreshing tub of strawberry ice cream. Noticing his curiosity, she offered him a spoon, inviting Steven to try some as she looked away, not wanting to put him under any undue pressure.

To Sarah’s surprise, Steven took the spoon and gingerly tasted the ice cream, as staff jumped up and eagerly ran off to grab some more of the plastic spoons to take home. You see, Steven had never tolerated cutlery in his mouth, following a horrendous incident at school when he was force fed with his hands held behind his back, until he almost choked. From then on he would only eat finger food in small chunks. “I was delighted when I found out about that day at the beach,” says Steven’s mother Mrs Robson. “He now sits with the other lads at the dining table, something that he would never do before. It’s taken a long time but he now sees that food is not so terrible.”

The surveys were sent out in July and we ds 2016 Family and Frien would really value Satisfaction Survey your feedback on the support we provide to your relative so that we can continue to improve the support we provide by addressing any concerns you may have. We also pass on compliments to the relevant front line staff! so that we can improve we provide right, and are getting the support how we support To make sure that we hear your views about it is important that we and where your on things where needed, are asking for your name to the and involve you. We your relative or friend any concerns and compliments so that we can pass on whole. the organisation as a relative or friend is supported your experience throughout from learn and staff team involved the support and don’t like about or friend what they like relative your asking in their life if they are We are also other people involved we will also be asking to the relevant they are getting and back all the responses feed will We are supported. concerns raised. We will happy about how they place to put right any steps they will put in our support improve to place service and ask what in put to United Response needs also look at what procedures organisation. throughout the whole couple of hours a week organisation from a of support across the community, in the family We deliver a wide range locations, out in the is carried out at shared may be applicable to to 24 hour care. This not all of the questions own home. Therefore, home or in the person’s indicate this. an option for you to you and we have included included or post in the FREEPOST envelope by the 24 August 2016 Highland House, 165 Floor, Please return the survey 4th Response, AHZ, Lu Large, United to: FREEPOST RTRX-TKBZ-A 1NE SW19 The Broadway, London Or you can fill the survey

in online at

United Response encourages feedback on everything we do, and 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:

• • •

“My son Sam likes the friends he’s made at the house,”says Judith. “The youngsters care for one another, support each other - they fight occasionally of course - but when one of them goes away they are missed terribly. Sam sees the staff as his friends as well as helpers, and as it’s a young staff team they are viewed as fun to be with! Sam’s home is an incredibly social one, always full of visitors. He’s built a life

Emer Morris (pictured far right), service manager of our Richmond services, was one of the nominees:

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

“I was delighted to be nominated for an award after three months

Strategy for the future We have created our new four year corporate strategy, and despite there being tough financial restraints with funding cuts and a challenging political environment, have stuck to our beliefs to create a strategy that will help us to continue to provide high quality, sustainable support.

And remember, you can always call our Head Office on 020 8246 5200 or our Chief Executive Hotline on 020 8254 3135.

UNITED RESPONSE CORPORATE STRATEGY

2016-2020 HOW WE WILL ACHIEVE

In addition, we’ve asked families to contribute to the conception of our new values. They are to be: • • • • •

creative, strong, honest, responsive and united.

for himself there and is part of a new community. With the difficulties in the care sector, awards like this are important to recognise the difficult but rewarding job support workers do.” Mum of Jack, agrees, “Good support workers are vitally important in the lives of our young people. These awards recognise the team’s hard work and commitment.”

Web feedback We want your opinions on our upcoming website changes. Join our parent consultation group here: http://tinyurl.com/urparents

We hope your family member will see and experience these values in their day-today support. If you United Response Values would like a copy, please email lu.large@ unitedresponse.org.uk WHAT IT FEELS LIKE FOR THE PEOPLE WE SUPPORT

WHAT IT FEELS LIKE FOR THE PEOPLE WE EMPLOY

WHAT IT FEELS LIKE TO THE OUTSIDE WORLD

We’re creative

I am supported to try out new ideas and my support workers have lots of ideas about how I can achieve my goals.

I am encouraged to be creative and entrepreneurial in the way I do my job, whether it’s directly supporting people or providing specialist services.

We have a reputation for innovative approaches and for finding new ways to do things, whether this is through how we support people or through our awareness campaigns.

We’re strong

I feel safe and secure and I know support will be there for me when I need it. My support workers aren’t afraid to take risks and to try new ways of supporting me to achieve what I want to in life.

I know that I work for a sustainable, financially sound and well run organisation. I have access to the tools and support I need to do my job well. I know I have the support of my manager in supporting people to achieve their goals and to challenge injustice.

We are sustainable not just in the short term but into the future. We manage our finances both by being as efficient as possible and by growing and diversifying our support. We are always striving with and for the people we support whether this is getting their support right or campaigning to make a difference.

We’re honest

My support workers are open and honest and put my needs first. If something can’t happen they tell me why.

My employer is open and honest with me and takes the time to explain any changes. My employer listens to my views.

We do what is right with and for the people we support. We aren’t afraid to raise difficult issues and to champion the rights of people we support. We balance the need to be pragmatic and sustainable while never losing sight of the reason we exist.

We’re responsive

My support is dedicated to me and adapts to my needs to enable me to achieve what I want to out of life – even when it’s difficult.

I know that my work matters and whatever my role, I go the extra mile on behalf of people we support and the wider organisation.

We respond to what the people we support tell us are the big issues facing them in their lives and work with others to change things for the better. We don’t give up, however tough the environment or however big the challenge. We have the systems we need to make sure that our delivery is consistently high quality, and measurable.

My employer works with me as a valued partner. I know I have support to work with others to achieve the very best for the people I support and the wider organisation.

We work in partnership with others whether that is people we support, families, commissioners or other like-minded organisations. We know our voice and our impact is stronger together and so we are United. We are United Response.

OUR VALUES

Has your relative had a breakthrough recently that you’d like to share? Send it to anna.nathanson@ unitedresponse.org.uk

We asked some of the parents from Richmond what they thought made the support their relatives received so good:

2016

Your feedback matters

•

of working at United Response; I put my heart and soul into my job and love it! I care about the people I support; they make me smile and make my job worthwhile. The support team are incredible and deserve an award too.”

United Response prides itself on having a workforce of support staff who are passionate about what they do. So we were chuffed to bits when three of our Richmond staff received nominations for the 2015 Dignity in Care Awards. These awards are particularly meaningful since the nominations come directly from the families and the people staff support.

.uk/r/familyandfriends

www.surveymonkey.co

•

London staff nominated for Dignity in Care Awards

OUR STRATEGY

We’re United

My support workers are on my side. They work with other people to help me get the best possible chances in all areas of my life.

It is never too early to start planning and thinking about the future.

CHANGING LIVES FOR YOUNG PEOPLE

Successful planning for a young person involves lots of people: family, friends, education and social workers. A good plan identifies the roles and responsibilities of these key people. Ensure that everyone involved in making the plan has an action to take forward that will support the young person.

Be SMART – Have a plan that is specific to the young person, where outcomes are measurable, attainable and relevant for the person. Have clear timescales in mind.

IN TOUCH - SUMMER 2016

Finally, be creative! Don’t limit opportunities; think outside the box and aim high.

Ensure the plan prepares the young person for adulthood. Plans should include action plans for: paid employment, independent living, relationships, community life, further education and health.

People we support in London are about to begin trialling a brand new kind of support plan – one which embraces the ease and accessibility of video and photo sharing to bring the details of someone’s world to life at the click of a button. RIX Wikis are the brainchild of RIX Research and Media, whose organisation specialises in making technology easier for people with disabilities.

No one wants to feel like their life is mapped out for them. For young people - especially those with disabilities - having the freedom and support to try new things can make the difference between and .

The aim of the new Wikis is to streamline the volume and multi-organisational paperwork that goes into one person’s support plan into one secure online platform, making it easier for everyone involved in someone’s support to find out what they need to know – quickly and in an engaging and memorable way. And because they’re password protected, the control of who gets to see each part of the plan remains completely in the hands of the individual, and the staff or family members they choose.

good support plan for any young person must first and foremost be aspirational and person centred. It must include not only their qualities and skills, but also the goals they’ve set their sights on for the future. For example, maybe they want to get on the career ladder, build their social network, or move out of the family home. A successful plan looks at these goals and asks: “How are we going to get there?” This is when the plan looks at the practical, step-by-step process of how to get from A to B and identifies the roles of key people in the young person’s life. Some things to think about before you start planning: How will the young person be at the centre of their plan? And who else could be involved?

Adam Sutherland, the Transition Service Manager at United Response’s London services, explains how he thinks Wikis could transform support plans for young disabled people. My Goals. This section identifies both the ‘here and now’ and future goals of the young person. This section starts with their aspirations and dreams. Working and Not Working. This section helps the young person and family focus on what does and doesn’t need to change in preparing for adulthood.

The Action Plan. This part outlines the practical, step-by-step process for achieving the goals. It includes thinking about who will be involved and what education and employment provision is available to the young person. Check Points. This is the process of reviewing the action plan. Checking progress regularly ensures that the young person is moving towards their dreams and aspirations.

“By the time someone comes to adult services, they’ll have amassed roomfuls of paperwork – much of it old and irrelevant to their current lives. This paperwork comes from many different people – doctors, social workers, commissioners, support providers, and schools – to name a few. Trying to make sense of all this information quickly when you begin supporting someone is long-winded and very time-consuming. By using Wikis, people can immediately bypass all of this and get straight to the information that matters to that person – what they like to do, how they want their support, how they communicate,

For some helpful tools and advice on preparing young people’s support plans, go to www.specialneedsjungle.com or www.councilfordisabledchildren.org.uk

who matters in their life, what medication they take…and all in their own words, or the words of the people who know them best. What makes this particularly brilliant when creating support plans that work for young people, is they are so easy to review regularly – and this is really useful when supporting people who are at a stage in life where their choices, support and lifestyles are likely to be changing all the time.” United Response is about to trial Wikis for 40 of the young people we support in London, with the aim of extending them to everyone after a two year pilot period if successful. Adam hopes they will be embraced by families and the people he supports as a natural step towards a more inclusive approach to information-sharing. “Expectations from families have changed a lot from ten years ago,” says Adam, “Before, young people’s plans might have been all about taking them to the pub, or bowling or to the cinema. Now, they still include those things, but have become much more ambitious – they are about finding people work, setting up social enterprises and helping increase people’s opportunities to interact with others more meaningfully.” Wikis give families, parents and siblings a powerful voice in their child’s lives, allowing them to play active roles in making sure the support they receive is working and giving them regular access into what their loved one has been up to, through the viewing of videos and photos taken in real-time. “One of the hardest things for parents can be learning to trust enough to take a step back when their children move into adult services,” says Adam, “I think Wikis could really help with this. They’ll be able to see with their own eyes what their son did at therapy that day, or how their daughter’s day out went – because it will already be online, as a video or photo, ready and waiting for them in one click.”

GETTING PEOPLE INTO WORK

IN TOUCH - SUMMER 2016

More than just a pay cheque

ob-hunting can be a soul-destroying exercise, one determined - or so it can feel - to leave even the most accomplished candidates feeling bruised and rejected. And it’s even harder for many people with learning disabilities. But there is hope. With the right access to supported employment services, disabled people can fight their way through the throng and emerge from the other side waving a pay check, instead of a white flag. Here, a United Response job coach, and a mum of someone we support, share their experiences of entering the job race - and coming out winning.

a paid job,” says Matthew, “But her enthusiasm for talking was proving to be a real hurdle. In interviews, she struggled to present herself in a professional way as her eagerness to get the position led her to cut in when the interviewer asked a question – and often with an irrelevant answer. She needed help with her interview technique.”

As 23-year-old checkout girl Laura Whitwell scans a bag of apples, she smiles and asks the stressed out mum in front of her if she wants help packing. Laura prides herself on her cheery disposition – and today, she has lots to smile about. After seven years of job-hunting she’s finally found her first paid job. As part of the Tesco team, she helps with stock rotation, tidying and serves customers at the busy tills. This is her favourite part of the job because talking to people is something she’s always been rather good at. Although that hasn’t always been seen as a strong point, as United Response Job Coach, Matthew Wignall explains: “When Laura first walked through our doors, she was desperate to get

Matthew started working with Laura 1-to-1, putting her through a six month schedule of mock interviews where she could practise learning how to listen patiently, and think carefully about her responses. It wasn’t an overnight success. Laura went to numerous real-life interviews during her training, and although none of them led to a job, they gave her and Matthew the chance to practise her skills. When he felt confident she was showing improvement, Matthew began to review what kinds of jobs Laura was applying for. Her CV included short-term placements at a nursery, which had fuelled a desire in Laura to work with children. “As much as Laura had enjoyed her work experience in this field, it was clear she just didn’t have the necessary qualifications to get a job working with young children,”

says Matthew, “I thought she might have a better chance of success if she made use of the customerservice skills she’d gained through her volunteering jobs at a charity shop and as a café assistant. So, when some seasonal vacancies came up at two of the supermarkets in the area, Laura decided to apply. Little did she expect she’d do so well in the interviews, that she’d be offered two jobs at once!” Laura and Matthew were over the moon that all their efforts had paid off. Laura took the role at Tesco and hit the ground running. She quickly talked her way onto the checkout tills, where she knew she’d be a natural. By the end of the two month placement, she’d impressed her bosses so much, that she finally got what she’d always wanted – her first offer of a permanent, paid job. “Getting this job has been such a huge confidence-boost for Laura and she feels really good about herself,” says Matthew, “She never gave up – and with the right support behind her, she got there in the end. I still see her every month or so – although now it’s just to buy a loaf of bread, not to offer jobhunting advice!”

Like many 24-year-olds, Ashley Martin was an avid gamer, holing himself up in his room for hours at a time. But unlike his peers, life outside those four walls was incredibly isolated. Ashley has a learning disability and ADHD, a side-effect of the latter included him experiencing intense bouts of anxiety when using public transport. “Ashley had always been really shy,” explains his mum, Judith. “He had absolutely no confidence and thought he was worthless. When he moved from child to adult services, he found himself with nothing to do. His dislike of public transport meant going into the main city centre was a nightmare. He was convinced everyone was laughing at him, and if we were waiting for a bus and it was busy, he’d beg me to hold back and wait for the next one – and then the next one - until I had to force him to get on.” Judith was worried about Ashley but didn’t know what to do to help. But then a letter from the Job Centre fell through their letterbox, inviting him in for a meeting to discuss accessing United Response’s supported employment service – in particular, our 180 scheme, which supports young people with learning disabilities, Autism and Asperger’s to find work. “When we walked through the door for that first meeting I was sceptical,” says Judith, “In my experience, people often say they can help, but nothing comes of it. But Kylie – the job coach – was so friendly and couldn’t do enough for Ashley. When he decided he was comfortable enough to go on his own to the meetings after just a few sessions, I was in shock! It usually took him years to trust someone!” Over the next three months, Kylie worked with Ashley to help him complete two units of the 180 programme, focusing on work readiness skills – such as completing a CV and interview skills. When considering work placements, Kylie knew the key factor would need to be proximity, so Ashley could travel to and from work independently.

“

I thought it would be impossible for Ashley to ever get a job...to see him so confident makes me so, so proud. Ashley’s mum

“That left us with only a handful of options,” says Kylie, “But there was a Pizza Hut nearby that he’d completed work experience with during college. I approached the manager and she was really engaged with the idea, and offered him a work trial. He impressed everyone so much that they offered him a paid job. He was thrilled!” Now Ashley helps prep food, wash dishes, cut the pizzas and get the bases ready. The systematic routine offered by the job, combined with the supportive team, have led to his confidence getting the boost he so desperately needed something his mum never thought she’d see. “From when Ashley was a little boy, I’ve been worrying about his future,” says Judith, “I thought it would be impossible for

him to ever get a job, and saw him wasting his life all alone. That thought scared me. It made me feel horrible – all I wanted was the best for him. Now, to see him so happy and confident makes me so, so proud. He still has his bad days at work, but overall, he wouldn’t want to be anywhere else. He’s even met up with a group of his co-workers in the local park – something he’d never have done six months ago.” Ashley has since been offered an increase in hours at Pizza Hut, which led to him making the big decision to come off Employment Support Allowance. “When I think of other parents who might be feeling like I always did – that their child won’t ever be able to get a job – I say ‘keep on fighting – there is light at the end of the tunnel and you will get there in the end’. Because of United Response’s support, I can finally see a future for Ashley.”

YOUR STORIES

Family reunited after 74 years in the dark

nited Response has always understood the hugely important role families play in the lives of people we support. But for many of the older generation we support – particularly those who grew up living in institutions – family ties were lost or severed a long, long time ago.

But what happens when the new generation decides to delve back into their family tree and discovers a past they knew nothing about? Here, we share the heart-warming story of how Maree, a 74-year-old woman we support in Kent, found herself welcomed into a long-lost family she never knew she had… In September 2014, the house Maree lives at received a call from someone called Claire from Pontypool, asking questions about Maree. Claire (who later turned out to be Maree’s niece) had started researching Maree, as an auntie had mentioned that John - her father - had a sister who was given away. Intrigued, Claire asked her mum whether she thought it would be ok for her to try and track her long-lost aunt down.

IN TOUCH - SUMMER 2016 “Mum told me that dad had always loved the idea of having a sibling, as he had grown up an only child,” says Claire. “I was lucky, as I already had a good amount of information to begin my search with, and the fact Maree hadn’t been adopted made it easier. I started by checking through birth and marriage certificates before I found who I thought was my dad’s possible sister, and then telephoned the house Maree lives at. I felt very nervous when I made that first call…what response would I get?”

Once everyone felt emotionally prepared, a Skype call was arranged so that the newly reunited family could see and speak to each other for the very first time. John and his wife then arranged a visit to Maree in December 2014.

Maree has been supported by United Response for over 25 years, and when Claire made that first tentative call, the support team were initially concerned it was a hoax, as service manager Heather Peachey explains:

Claire also remembers the day with a big smile: “It seemed unreal - such an exciting and happy day.”

“Staff had tried to find Maree’s family once before but had had no success. So they asked Claire for more information to make sure she was genuine. It turned out she knew a lot about Maree, and even sent a photo of Maree’s mother. And that’s when we realised it was true – Maree had a long-lost family!” When Claire broke the news to her dad, he was shocked. He had thought the rumours of having a sister were just hearsay. Breaking the news to Maree was another matter entirely. The last thing staff wanted to do was make her upset. She’d always told them she had no family, so how would they explain to her she was wrong? “We tested the water by asking Maree how she’d feel if she did have a family – would she be happy?” says Heather. “She said she would, so we showed her some photos of her brother, John. Maree has limited communication skills but understood immediately who John was and got really excited. She smiled and asked to see more photos of her family, even asking us to get them framed for her!”

“That first meeting was amazing,” recalls Heather. “Maree and John gave each other a huge hug and kiss. It felt very natural and was an emotional day for everyone - family and the United Response staff!”

The more Maree and John found out about each other, the more they surprised themselves with odd coincidences – one being that their birthdays were only one day apart. They decided to celebrate their new friendship by holding a joint birthday party in May 2015 – Maree’s first experience of having a traditional family birthday – complete with homemade cake from Claire. Since then, Maree has travelled to Wales to meet her niece and the rest of her family and in May this year, she became the special guest at her brother’s surprise 60th birthday party. In between visits the family stay in touch via weekly Skype calls. “For Maree, learning she has a brother has made her life complete,” says Heather. “Her reunion with her family has been an amazing, humbling experience. We didn’t know what Maree’s reaction would be when she heard about John. I’ve learnt to never underestimate someone with a learning disability.”

Claire’s advice to anyone who may want to make contact with a lost family member: “Don’t hang about thinking about it, go for it now. It is a gift when you find someone. Start by researching birth and marriage certificates and ask other family members. It is possible to find someone. It is heart-breaking to think that Maree had been on her own for so long. I think if my grandmother had had Maree today, things would have been very different. Maree wouldn’t have missed out on having a family for nearly her whole life and there would be far more lovely memories for everyone.”

SPECIALIST AREA: COMPLEX NEEDS

IN TOUCH - SUMMER 2016

“

Jacob has a great bunch of carers - we have developed a real bond and friendship

ulie Thorpe watches in amazement as her son Jacob gets up and puts the yogurt pot in the bin after finishing his snack. This might seem like a small, everyday thing to do, but for Jacob it is a huge achievement. In the past, he would knock the empty container on the floor to signify he’d finished.

“My life revolved around Jacob,” remembers Julie of bringing him up. “When he was little, he screamed day and night. When he got older, from the ages of 10-16, he was quite violent due to the frustration of not being able to express himself. He would chuck stuff at me, and run around the house smashing things and jumping all over the furniture. I had to do everything for Jacob; bathe him, feed him, clothe him, give him his medication. I was like his shadow and followed him everywhere because of his regular seizures. My husband was away a lot working and then we split up, so I brought Jacob up alone, along with four other children.” Now 23-years-old and supported 2-to-1 by United Response in his own house in North Shields, Jacob has come along in leaps and bounds. A naturally sociable, funny and friendly character, Jacob has complex needs, which means having a range of disabilities or conditions. It is an area that United Response specialises in. As well as being on the high end of the autistic spectrum, Jacob has a learning disability, epilepsy and brain damage, and a history of exhibiting challenging behaviour. He is verbal but has limited communication. When Jacob first started being supported, staff were so worried about increasing his chance

of having a seizure that they inadvertently became risk-adverse. This meant that he didn’t partake in many activities. But as they got to know Jacob better, they began to realise there were worthwhile benefits in taking reasonable risks. As a result, Jacob was able to take part in pursuits such as horse riding, using the hydro pool and going for walks, all of which he thoroughly enjoys. Jacob also loves visiting his family and being in the garden.

Staff came to see that supporting someone with such complex needs as Jacob’s is about learning how to take reasonable risks, not being driven by fear, and building a trusting relationship with the person they’re supporting. “We used ‘little and often’ when trying out new activities with Jacob, always going at his pace,” says service manager Mel Cruddis. “It was about trying again if something didn’t work the first time, and never giving up. One example is trampolining; at first it was just ten minutes; now it’s an hour. In terms of throwing away rubbish, we started by bringing the bin to him, before gradually moving it further away each time. It’s all about using Active Support and centering the support around the person.”

“

It must be very hard to hand a child over to be supported outside the family, and I see it as my job to instill confidence in Jacob’s mum and demonstrate over time that we are delivering very high quality support.

Structure, predictable activity and consistent support that listens to and responds to a person’s preferences are all key when working with people with complex needs. Routine is very important to Jacob because of his autism, and he needs constant engagement. Staff use countdowns a lot to let Jacob know when an activity is coming to an end, for example finishing using the toilet, or just letting go of objects. It goes without saying that staff need to be caring, compassionate and empathetic, as Mel explains: “They have to see Jacob for the person he is, not just his disabilities. They need to have a very calm approach and communicate using very short, simple sentences so that he understands. Tone of voice is very important too.” Finding out what the person is trying to communicate through their behaviour, rather than just dismissing the behaviour as ‘challenging’ is imperative. For instance, Jacob might shout or swear if he feels like he is not being understood, or when he is unhappy with a situation. Adapting the environment is also essential. “At first we had the wrong type of bed for example, and he kept banging his head on the slats,” says Mel.

Having open, clear and transparent communication with other external experts when managing Jacob’s complex support needs is key. Sharing information and using learning logs to try and capture if something has worked is also important; it’s about staff constantly keeping each other abreast of what works. Involving family is just as crucial, as they are the experts on their children. “Jacob has a great bunch of carers,” says Julie. “We have developed a real bond and friendship and I’ve really got to know and trust them; communication is so important.” Mel agrees. “It must be very hard to hand a child over to be supported outside the family, and I see it as my job to instill confidence in Jacob’s mum and demonstrate over time that we are delivering very high quality support.” So what is at the crux of United Response being so good at supporting people like Jacob who have complex needs? “Put simply, they provide me with the tools and resources to help me do my job,” says Mel. “The secret to all good support is getting to know the person very well. It’s all about Jacob, and that’s how it should be.”

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UNDERSTANDING AUTISM One of Shaun’s favourite pastimes is fishing

Shaun with mum, Donna

“ The staff don’t get tired like we do!

with my husband and me, as well as his younger sister Rhian, whom he has a lovely relationship with. We have a lot of happy memories of Shaun’s childhood: going on family holidays, for walks in the park; normal things.

t United Response, we specialise in supporting people with autism, with many of the people we support being on the spectrum. Some are able to live independent lives with a small amount of input, while others require on-going, specialist full-time support. One of these people is 31-year-old Shaun Davies, who for the past five years has been supported by United Response to live in a shared house with three men of a similar age who are also on the spectrum.

Here, his mum Donna shares their family story.…

“Shaun is a lively, sociable and caring young man, and his days are filled with activities such as bowling, cycling, swimming and fishing, which he loves. As well as attending a community service twice a week, he does courses in things like baking, and enjoys working with animals. What’s great is that he’s doing all this with people of his age, rather than with me and his dad. When Shaun was a child, there wasn’t much awareness or knowledge out there about autism, and getting the support we needed was a real battle. Every time we asked for help, the social workers would always tell us that they’d get back to us, and we had to remind them that we were still here. But from the very beginning, United Response involved us in everything. We work very closely together to share approaches and techniques to help keep things routine and familiar for Shaun when he goes between the service and family visits, and this has worked really well. Shaun has support with everything from personal care and getting around safely, to day-today living such as cooking dinner. We’re a very close family and up until the age of 26, Shaun lived

From the age of about two, I noticed that Shaun seemed to act a bit differently from other children, but the health professionals at the time weren’t very useful. It wasn’t until the age of ten that he was diagnosed with Fragile X with autistic tendencies. It was nice to get a label because then we could get help. We always had to be one step ahead of Shaun, predicting what he might do, and we had to avoid putting him in situations he would be unhappy in. He never liked crowds or loud noises, and when he was experiencing sensory overload, we would have to remove him from the situation that was causing him anxiety and make sure he was in a calm environment. Sometimes people out and about were rude – they didn’t seem to understand that some people are different. At times we would get a look, and the older generation seemed to be of the

“

Sometimes people out and about were rude - they didn’t seem to understand that some people are different.

mentality that “if you’re not ‘normal,’ you should be hidden away.” But I never confronted them, I would just smile and carry on.

like his parents do! We see him twothree times a week, he regularly stays for weekends and he’s always included in family holidays and events.

Shaun went to a special needs school, before going to college for three years and then a day care service. That helped him tremendously; he learnt independence and life skills, such as cooking, gardening, and animal care. He has so many more opportunities now that he’s living independently, and the staff don’t seem to get tired

The support of United Response has made a real difference to our own lives as well as Shaun’s. Before, we only had our family life; now we have our own lives as well. We know that he’s happy doing different things, enjoying life with us and without us. That’s good to know as we won’t be around forever. Having an autistic child can make

IN TOUCH - SUMMER 2016

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parents feel isolated and it can be hard to know where to turn for support. But I would say, “Keep positive. Ask for help. Hang in there, life gets better.” At the end of the day, those with autism are fun people. They just look at the world differently.”

Getting the support right for autistic people Working with people on the autistic spectrum can throw up all kinds of challenges for staff. Because people experience autism so differently, there are no standard set of rules to follow and it takes time, patience and lots of careful observation to really get to know how each person communicates and what particular things might trigger them to feel overwhelmed or upset. Our staff are trained in all aspects of autism, including in recognised techniques such as SPELL, STEPP and PECS, meaning that they are able to deliver support in a very person centred way. As well as employing local staff, we also provide national and regional back-up from senior managers and staff with a range of specialist skills. United Response is in the process of moulding our very own autism expert, in the shape of Tyne and Wear service manager, Carolyn Palmer. Carolyn has spent seven years working with people with learning disabilities and autism at two United Response services. Her passion to understand autism more deeply led to her being awarded a £5,000 grant through United Response’s Jim Mansell Award in 2015, which she’s using to help fund her way through a Masters in Autism.

“When it comes to staff training, United Response has got it spot on,” says Carolyn, “The in-house training is regular and strong and my whole team has had specialist external autism training. Once I’ve completed my degree, I want to train other staff across the organisation to understand the intricacies of what life is like for people on the autistic spectrum. I hope this will help us all to understand more about how they ‘see’ the world – including understanding what it is like to be skin, light or sound sensitive.” One of the areas Carolyn has worked hard to improve on in her services has been continuity of support when the people they support visit relatives. “Routine and predictability can be the key to a calm and happy house for people with autism,” says Carolyn, “We noticed that whenever the guys came back after a weekend with their parents, things would be unsettled and stressful. So I thought, why don’t we see if the families would benefit from going on the same training as our staff? So I talked with the Community Learning Disabilities Team and found free training for them to go on. Not only did it help them understand why we do things the way we do, it also had a positive effect on the house as a whole as their routine was maintained. I believe strongly that families are the best advocates for the people we support, so think it’s vital we can all work together.”

OVERCOMING BARRIERS WITH PEOPLE WITH MENTAL HEALTH NEEDS

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Postcards from the Edges This is an ongoing project which encourages people we support to express what’s important to them through artwork, poetry, photography, stories, collages or messages. These pieces have featured in UK-wide art exhibitions, online, in publications and in a coffee table book.

Amanda agrees that the support Simon receives has made an enormous difference. “I’ve seen a lot of changes in him since being supported by United Response over the past twenty years or so,” she says. “They’ve given him the time,

awfully dangerous?” I think schizophrenia continues to be incredibly misunderstood. It is still often associated with violence, yet someone with schizophrenia is more likely to be a victim. They have the same worries and fears as everyone else, but the world is often scarier to them than it is to you.

Approximately 1 in 100 people will experie nce schizophrenia in th eir lifetime.

a children

space, privacy and support, both mentally and with practical things, to be himself and have more independence. It’s exactly what he needs to live his life.” Service manager Steve Blake says: “At the beginning, when I told people what I did for a living, they would say; “Isn’t that

by Ben Harrison

Introducing a new column from our Housing expert Ben Harrison, who, in this issue, tells us about how United Response can help when it comes to renting to family members with disabilities…. Today’s competitive housing market means that people with disabilities and their families often struggle to find a suitable housing solution.

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companionship, understanding and a cool environment.”

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Mental Wealth A photography project resulting in an exhibition called Mental Wealth. The images communicated the reality of living with a mental health need, including hopes, fears and achievements.

all on her own

“For me, it is a dream come true,” says Simon of his support experience. “I couldn’t be without it. I am treated as a person – a valued person. I have everything I need: food, warmth,

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FRIENDS ARE REAL

Steve Blake, service manager

Today, with the right support, Simon is able to live a full and meaningful life, and shares a top-floor flat in a United Response Supported Living service with his partner Ginny, who also has mental health needs. Ginny does most of the cleaning and laundry while Simon does the shopping and cooking, as well as managing the bills. Staff support the couple emotionally and with practical aspects such as accompanying them to appointments. They have access to 24-hour care at the house if needed.

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You’re an idiot, you’re just lazy

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“Over the years, I’ve seen Simon transform from someone highly suspicious who thought the world was his enemy, to someone who is always looking to help and give someone a hand. He’s the kindest, most gracious man I’ve ever met.”

“Simon had a strong sense that the outside world was conspiring against him,” Steve recalls of the early days. “He felt like people were tying invisible ropes around his legs to trip him up, and he had build-ups where he had to scream. Over the years, I’ve seen him transform from someone highly suspicious who thought the world was his enemy, to someone who is always looking to help and give someone a hand. He’s the kindest, most gracious man I’ve ever met.”

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Simon values being able to lead an independent lifestyle.

“It was the 1970s and how they treated people with mental health needs was pretty archaic and they only had one drug,” recalls Amanda, who is three years younger than Simon. “There was an enormous stigma attached to mental health and a lot of prejudice. Nobody talked about it. There was this idea that, “you’re in the family, so you must be ‘crazy’ too,” – it was really unhelpful. Simon was in hospital initially and I remember us walking through the grounds with him telling me how terrible it was.”

When Simon came to be supported by United Response around two decades later, he was very isolated, spending much of his time alone in his room, and was understandably very wary of new staff. He would hold out his hand from behind the door to get his medication, and it took service manager Steve Blake three years to be allowed to enter Simon’s room.

TRUST

Simon leads an interesting and varied life, but what makes his story even more remarkable is that for nearly forty years he has lived with schizophrenia. The condition was first diagnosed when Simon was twenty, in

the second year of his English degree at Oxford University.

HELP

Simon Partridge pulls up in his car and his sister Amanda gets in. They drive to their favourite restaurant and enjoy a delicious meal and chat about what they’ve been up to, as they do regularly. Simon, 59, tells Amanda about his recent art exhibition, how his show on community radio is going, and shares some of the poetry he has just written.

Poems for... United Response launched a poetry exhibition to coincide with World Mental Health Day. It featured poems by people we support with mental health needs. We have published a book of all the poems, available online and print.

You becom

ne family’s story of how support for people with serious mental health conditions has changed over the decades.

United Response campaigns to combat stigma around mental health. Here’s a round up of our biggest projects:

for a walk When I go round at me. people look

20 years of support

IN TOUCH - SUMMER 2016

“Our Kent Mental Health service supports around 14 people and we also do outreach work.

“Over the years, the focus of our support has shifted from being task orientated - about making sure people took their medication and showered, had food and did their laundry and other practical tasks - to putting compassion first.

Some families have responded to this situation by taking out a mortgage and purchasing a property to rent to their son or daughter. However, even though benefit rules allow benefits to be paid in this situation, many housing benefit departments refuse to pay benefits when the landlord is a family member, which means that this option becomes unaffordable. We have worked with a number of families to solve this problem by leasing the property from them for an agreed fee and then letting it to their son or daughter. Because we are not related to the tenant, housing benefit can be claimed and rent paid to United Response, which allows us to pay the family what they need to cover the mortgage. For more information, please contact Ben.Harrison@unitedresponse.org.uk

It is very important to involve families in what we do wherever possible: they’re great allies, especially when dealing with local mental health teams. It also definitely benefits peoples’ moods and sense of wellbeing when families are involved.”

OUR STAFF

IN TOUCH - SUMMER 2016 around the neck and started yanking me over and I thought, ‘I can’t deal with this!’. But then one of the other staff explained that he was actually trying to give me one of his ‘hugs’ and I realised I needed to give myself more time to get to know the job and the people I was going to be supporting.” Like all new staff, Corrina spent her first few months on mandatory training, getting to grips with the practical demands of the role, such as manual handling, health and safety and food hygiene, alongside learning about United Response’s ethos – the why, what and how we do things, to ensure every support worker starts their shift with only one priority – to make sure the person they support is at the heart of everything they do. To help Corrina put her skills into practice, she spent her days shadowing more experienced members of staff – learning as she went.

years ago, Corrina Hearmon was stuck in a rut, chatting about the weather and pulling pints in her local pub. Today, she has a Masters in Analysis and Intervention in Intellectual and Developmental Disabilities and is a key part of United Response’s talented in-house training team. An expert in person-centred support, she challenges staff to think creatively, fine tune their support techniques and reignite their passion for the life-changing

work they do. So how does a bored barmaid from Kent become one of our brightest sparks? Corrina began her careerchange when she joined one of our 24 hour living services as a relief support worker back in 2004. With no previous experience, her first day in the house was also her first real experience of being around people with learning disabilities. She quickly came to realise life as a support worker was not always predictable… “I still remember my first few days and feeling completely overwhelmed,” recalls Corrina, “One of the people we support grabbed me

“The people I was supporting were very much part of the training team. They were encouraged to show me – in whatever way they could exactly how they wanted to be supported,” says Corrina, “One guy brought me his box of signs, so I could learn how to communicate with him. Another was asked before they went into the bathroom whether or not they wanted me to come with them or not. It was clear from the start that as an organisation, United Response put a lot of value on letting the people we support be the best experts on their support. As each day went on, I came to know more and more about what each person could and couldn’t do without support, which made

it easier for me to be useful without just doing things for people.” Corrina soon opted to become full-time, and became a valued member of the team supporting three men and one woman over 60. As age-related health conditions made it harder for them to navigate their home safely, Corrina took a role in organising a significant move to a more accessible house, leading to her promotion to team leader. It was during this period that she encountered her first interaction with the family of someone she supported. “As part of the move, we took over the support of a younger man who had some challenging behaviour,” says Corrina, “The other men I’d supported had come from institutions and had all been too old to have much family input. But now things were different. I got to see what we do from another perspective – through the eyes of two very anxious, and very strong parents who wanted – and needed – to know we were going to be there for their son. “They’d watched him be moved from pillar to post over the years and had spent their lives being sat down by ‘experts’ accusing their son of being violent. They had very natural concerns when we started supporting him – will he be safe? What are the staff like? Will they be able to handle his challenging behaviour or will he scare them off and be moved again? I was determined to let them know that my team and I would do everything possible to keep him with us. And we have. And his challenging behaviour has reduced because we put our efforts into finding out why he was being violent, rather

than simply reacting to it in the moment.” Corrina’s expertise in person centred approaches soon led to her being sought out as a staff trainer, and eventually, a Best Practice Champion. Now she splits her time between working at the Community Network – United Response’s drop in service in Cheriton – and acting as a professional problem-solver for staff who find themselves stuck in metaphorical support dead ends. “So often, all it takes to solve a problem is someone else to observe it who isn’t caught up in the day-to-day detail of running a service or providing support,” says Corrina. “I visited one service where the staff had concerns about a man who had recently moved to United Response from another support provider. He found mealtimes very stressful and would throw his plates and cutlery on the floor. The staff from his previous provider had reacted by only giving him plastic cutlery and plates – but our staff didn’t think this was the best solution. After four days of careful observation, we realised he only ever got angry when someone put his food too close to his cup. So simple, yet so easily overlooked as just ‘challenging behaviour’. “And that’s where United Response is excellent. They have that in-house expertise that allows staff to get advice when they need it. During my Masters, I’ve done placements in many other organisations and not one of them had the same values as United Response. Our training encourages staff to really care about people and to respect their choices. It’s never just a job.”

Having highly trained frontline staff who are on board with the ethos of United Response will always be one of our priorities as a support provider. But behind every great member of staff, there needs to be an equally inspiring manager. Support worker Barry Dean is one of United Response’s newer recruits, whose enthusiasm for what he does has already been reflected in his recent success as the first person in his region to complete his Care Certificate within 12 weeks. He tells us how the managerial style at United Response has helped him have the confidence to think innovatively with the people he supports: “I’ve always been someone who wants to go above and beyond what’s expected of me if it means I’m making a real difference to people’s lives,” says Barry. “But at my previous job, I never felt like I was treated with any respect when I suggested new ways of doing things. My opinions were ignored and I was left feeling undervalued and unconfident. At United Response, it’s been completely different. My manager has an open door policy and I can discuss any problems I have and make suggestions about how we do things, and I know she’ll listen and support me. Barry’s line manager, Diane Dawson, believes giving staff the freedom to think creatively is key to unlocking their true potential: “Barry recently came up with the idea of making mealtimes more appealing to someone we support who can only eat blended food. Everyone else was eating pizza, so he made her a personalised version using a mash potato base with pureed toppings laid on top. Such a small thing, but it shows how he’s always putting himself in the shoes of the person he’s supporting asking the question, ‘What would I want if this was my dinner?’ And that’s what makes a good support worker.”

GETTING THINGS RIGHT

IN TOUCH - SUMMER 2016

Excerpts from the CQC report:

Kent service recognised as ‘Outstanding’ What makes good support? It’s a question we often ask ourselves, in a bid to keep on growing and evolving as a support provider. One place where we are delighted to have been recognised for getting things right for the people we support is our residential care home in Maidstone. The service, called John Street, was recently awarded an “Outstanding” rating by the Care Quality Commission, the organisation that regulates social care services in England. It is home to five people we support with complex needs, learning disabilities and sensory impairments. The report highlighted the “different adaptations and creative design ideas” for residents with sensory impairments. So what makes things work so well at John Street? Team member Debbie showed us around: “As well as our specialist sensory room which provides stimulation, we have darker carpet in bedroom doorways and deliberately placed creaking floorboards with different noises and tones in each area of the house, so the people we support know whose room they are at. We have rails running along the walls with different designs outside each room so people can feel where they are too. We also have different carpet textures with specific bumps outside rooms so each person in a wheelchair can feel where they are in the house. If we are moving

people with a hoist we move our hands up and down people’s arms as a sign that they will be going up or down. We know the people we support really well, so we can communicate effectively with them. All of the staff use their own individual hands on greeting signs so the people they support know who is there. And if Jules, one of the women we support, wants you to go away, she’ll blow raspberries to tell you so!” Our success at John Street has come from our persistence in getting to know and understand each of the individuals we support, and from thinking creatively about how we can enable them to feel in control of their surroundings and their day-to-day lives, despite their limited communication levels and sensory impairments. Being officially recognised for our person centred approach is a proud moment for United Response and for the hard-working and passionate staff that work there – well done team!

22 Luke enjoys a sensory story session.

Out and about in Maidstone: Shared sensory story sessions at the library Helping people to engage in community activities is a big part of the way United Response supports people. Luke and his John Street housemates have been enjoying shared sensory story sessions at their local library. We joined in the fun for an afternoon session, where senior support workers Jenny and Nikki, who are trained Book Bag story tellers, brought two stories to life. The sessions are open to anyone and are one of the ways in which the team contribute to their wider

community. For this session, a young girl and her grandfather who were enjoying the library joined us. Each story comes in a bag with various objects and props, and for every page of the story there is something to hear, touch or smell – providing sensory stimulation for the group. For rain, support workers lightly splashed the group on the cheek, and when the wind picked up, a hat was placed on each person’s head which blew off. A pom-pom was used for rustling through thick weeds, and a whistle is blown when a football goal is scored. They even had a plastic frog that felt wet and slimy! Jenny said, “Luke really likes feeling the pages and smelling – this second story is good because we have a towel with talc on which smells nice! The story telling sessions are open to anyone and we like people to join in at the library - they are not only good fun but also a great way to promote disability awareness to the general public!”

Little and Often What should we do if a person doesn’t learn the skills they need to do things independently? Take Alex. He’s 32 but can’t cook his own meals or do his own laundry. It feels like we have a natural choice between keeping trying to teach Alex the skills he needs or just doing things for him. But if he hasn’t learnt things like this by now then still trying to teach him will probably be frustrating and unpleasant for everyone. So what usually happens is the other natural choice: we cook for Alex and we do his laundry for him, and in the meantime Alex waits doing nothing. Our approach is to put Alex’s skills and independence on one side and concentrate instead on finding ways for him just to join in, using an approach called ‘Little and Often’. In every activity there are parts that even people with really limited skills can do. Alex can hold a wooden spoon and stir, and he can put washing in the machine or a drawer or the basket. By making it as easy as possible for Alex to join in, with no stress about him learning things “properly”, we can make it a pleasant experience that he’ll want to do again. That way he’s doing things, not waiting all the time. Through “Little and Often” people like Alex become active, experienced and involved.

“

The staff team who support my daughter are great at focusing on little things to support her with. My daughter is able to be successful and you can see from her facial expressions how delighted she is with the little things she does: she is so happy and so are we with this sort of support Olwyn Danby, mother

PEER UNITED TO RESPONSE PEER ADVICE NEWS - THE FUN STUFF

Pam

When my daughter Anna was 11-13 years old, she went through a similar style of bullying. Because she has a learning disability, the other children sadly saw her as different to them. Anna didn’t say anything to me for over two years, continuing to go into school every day, as she likes routine. I had noticed that Anna had also become very quiet and withdrawn, and gradually she started talking to me about what was happening to her at school. I was furious and went into the school to talk to them about it. The school bought in an educational psychologist to talk to Anna but didn’t actually do anything to address the children that were bullying her! The school didn’t seem able to be able to deal with what was going on.

My advice would be – as soon as you notice a change in your child, talk and listen to them. Intervene early on at the school, to help minimise the long lasting damage this can do. Be assertive with the school. Help your son to be more confident, talk to him, get him involved in other activities, and most importantly let him know your home is somewhere that is safe and secure for him when the world is annoying him. Look for professional help too; it can sometimes take a little while to find at first but keep looking and you will find it. Now my daughter works 12 hours a week as a kitchen assistant in a team of six people, something I never thought I’d see her do.

United Response has produced an easy read leaflet called What to do if you feel bullied. It explains what bullying is, what makes something a hate crime, and who to call for help and advice. You can download it on our website: www.unitedresponse.org.uk/what-to-do-if-youfeel-bullied Previously, we have produced an anti-bullying training pack for schools in Manchester and Liverpool, called UR on Board. The pack included interactive games, video clips of people we support sharing their personal experiences of being bullied, and aimed to help young people understand more about what it means to have a learning disability.

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