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THE ROAD TO RECOVERY Outdoor adventure specialists Calvert Trust on their brain injury rehab programme
EARN WHILE YOU LEARN The benefits of apprenticeships
PUPPY POWER We meet the people behind the incredible dogs giving disabled people independence nationwide
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PUBLISHER Denise Connelly email@example.com EDITOR Lindsay Cochrane firstname.lastname@example.org STAFF WRITER Kirsty McKenzie email@example.com EDITORIAL CONTRIBUTORS Tim Rushby-Smith Alisdair Suttie DESIGN AND PRODUCTION Lucy Baillie firstname.lastname@example.org PRODUCTION ASSISTANT Lisa McCabe email@example.com SALES Marian Mathieson firstname.lastname@example.org ENABLE MAGAZINE www.enablemagazine.co.uk DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007
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Hello, and welcome to the latest issue of Enable Magazine! This issue is absolutely jam-packed with informative, interesting and thoughtprovoking articles – and I really hope you enjoy reading it as much as we’ve enjoyed putting it together. So what have we got lined up? This edition of Enable marks the changing of the seasons – after the doom, gloom and bleak weather of the winter months, spring is finally in sight. To celebrate, we’ve been taking a look at getting out in your garden and accessing the outdoors – it’s a lot easier than you’d think, and it’s got plenty of health benefits too! Find out more about accessible gardening options on page 11. Elsewhere, we’ve been looking into a controversial medical treatment that’s starting to grow in the USA – where parents choose to stunt their disabled child’s growth to make caring for them easier as they get older. One doctor who has been involved in the treatment, a family who have been through it, and a mum who’s against it, share their views. Check it out on page 31 – don’t forget to email email@example.com with your own opinion. Also this issue, we’ve been finding out more about the pressure couples face when raising a child with a learning disability, we’ve looked into living in a rural community when you have dementia, and the team at Calvert Trust Lake District have been telling us about their exciting new programme for people with acquired brain injuries. We’ve got all your favourites too, including our motoring review, the latest from columnist Tim Rushby-Smith, our diary page, the stories making the headlines and much more. And let’s not forget this issue’s gorgeous cover star! We are a nation of dog lovers – but did you know the difference our four-legged friends can make? We’ve been chatting with a Canine Partners puppy parent and the man who partnered up with one of her ‘graduates’ to find out more about the incredible difference dogs can make. Prepare to be amazed by just how special these talented pooches are. And that’s just the beginning! So grab yourself a cuppa, get comfy and enjoy. If there’s anything you’d like to see next issue? Let me know using the contact details to the left! Until next time,
THE INDEPENDENT LIVING GUIDE
This issue, we’re dedicating the middle section of the magazine to the topic of independent living. From products to accommodation, we’ve rounded up some of the best services to boost your independence. Check it out from page 35.
Lindsay Cochrane, Editor
27 SKILLS DEVELOPMENT FOR EMPLOYERS AND PAS Fancy hiring a personal assistant? There’s lots of support out there to help you get started.
51 THE JOURNEY TO DIAGNOSIS Two mums tell Enable about the lengthy path to diagnosis for their children – and the difference it’s made.
78 ACCESSIBLE APPRENTICESHIPS With National Apprenticeship Week kicking off in March, we’ve been finding out about getting involved.
©DC Publishing Ltd 2017. All rights reserved. No part of this publication may be reproduced or used in any way without prior written permission from the publisher. The views expressed in this magazine are not necessarily those of DC Publishing Ltd. The publisher takes no responsibility for claims made by advertisers within the publication. Every eﬀort has been made to ensure that information is accurate; while dates and prices are correct at time of going to print, DC Publishing Ltd takes no responsibility for omissions and errors.
23 LIVING ON THE EDGE What’s life like for people with dementia living in rural communities? We’ve been finding out.
17 Life 11 GREEN FINGERS Spring is on the horizon – meaning it’s the perfect time to get to grips with your garden. We find out more about how accessible gardening is. 17 LIFE AS A PUPPY PARENT Dogs are more than just adorable friends to have around the home. One woman tells us about her role in training up cute pups to become important assistant dogs. 54 SUPPORTING RECOVERY THROUGH OUTDOOR ADVENTURE The team at Calvert Trust’s Lake District centre tell us about their new outdoor activity programme for people with acquired brain injuries.
Sport 71 ON YOUR MARKS, GET SET... For sports fans, we’ve been finding out more about the smart prosthetics helping amputees go for gold.
31 THE RIGHT TO GROW UP In the USA, a handful of doctors are carrying out controversial treatments on young people with disabilities to stunt their growth, and make them easier to care for. We find out more. 56 THE FUTURE OF BRAIN INJURY REHABILITATION The Children’s Trust talk to us about progress that’s being made in acquired brain injury rehab for children.
20 PARENTS UNDER PRESSURE We take a look at the impact that raising a child with a learning disability can have on parental relationships. 66 FROM CARER TO PA Unpaid carers have many of the skills and qualities required to be a PA – so why not go for it and turn it into a job?
Families 51 THE JOURNEY TO DIAGNOSIS Two mums share how they dealt with a prolonged diagnosis process for their children.
Care 27 SKILLS DEVELOPMENT FOR EMPLOYERS AND PAS Fancy hiring your own personal assistants but want to make sure you get the right people for the role? We find out about training options.
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INDEPENDENT LIVING GUIDE From housing to telecare, products to support services, there’s lots out there to help you live as independent a life as possible – and we’ve rounded it all up in a special section from page 35 onwards. Supported by
This issue, you can win a three-night stay at the idylic Cotswold Charm Holiday Cottages! Find out how to enter on page 69.
Motoring 60 THE REVIEW This issue, we’ve been out on the road in the new Mini Countryman.
Employment and Education 75 THINK BIG When it comes to applying for jobs, don’t discount big name corporations. We find out about the benefits of working for larger companies when you have support needs. 78 ACCESSIBLE APPRENTICESHIPS Earning and learning at the same time? Sounds good to us! We’ve been finding out more about apprenticeship opportunities across the UK.
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THE LATEST CHARITY CALLS ON GOVERNMENT TO SCRAP DISABILITY BENEFIT CHANGES THE MS SOCIETY IS urging the government to rethink proposed changes to disability benefits, warning it won’t reduce the disability employment gap. The changes, which were put forward in the government’s Green Paper on work, health and disability in November, could see those in the support group of Employment and Support Allowance (ESA) and currently assessed as too unwell to work being forced to participate in ‘work-related activity’ or face having their benefits sanctioned. According to government stats, 92% of people with MS claiming ESA are in the support group. At present, they aren’t expected to carry out any workrelated activity.
Laura Wetherly, policy manager at the MS Society, says: “The government must recognise that many people with MS simply can’t work because of their condition and may not be able to return to work in the future. For these people, work has become impossible and in some cases could actually make their health worse.” The MS Society is calling on the government not to force people in the ESA support group to undertake compulsory activities as a condition of their benefit, and also to rethink plans to reduce support for new claimants to the work-related activity group by £30 a week. For more information about the MS Society’s MS: Enough campaign, visit www.mssociety.org.uk/ms-enough.
Children’s book with deaf heroine soars to top of Amazon chart THE NATIONAL DEAF CHILDREN’S Society has published a children’s story book featuring a deaf girl and her hearing friend – and it became an Amazon number one best seller in its first week on sale. Daisy and Ted’s Awesome Adventures was released to raise deaf awareness and tackle the lack of diversity in children’s book characters. Susan Daniels, chief executive of the National Deaf Children’s Society, said: “Most deaf children have hearing parents and go to a mainstream school where nobody else is deaf, which can be very isolating. Reading about someone like themselves will help them to feel included and understood – but ultimately, Daisy and Ted’s Awesome Adventures is a fun adventure story for
any child to enjoy.” Find out more about the book at www.ndcs.org.uk/daisyandted. All proceeds help the National Deaf Children’s Society to support the UK’s 45,000 deaf children and their families.
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OFFICIAL FUEL CONSUMPTION FIGURES FOR JEEP RENEGADE RANGE MPG (L/100KM): EXTRA URBAN 47.9 (5.9) – 70.6 (4.0), URBAN 32.5 (8.7) – 55.4 (5.1), COMBINED 40.9 (6.9) – 64.2 (4.4), CO 2 EMISSIONS: 160 – 115 G/KM. Fuel consumption and CO2 figures are obtained for comparative purposes in accordance with EC directives/regulations and may not be representative of real-life driving conditions. Factors such as driving style, weather and road
conditions may also have a significant effect on fuel consumption. Vehicle shown is Jeep Renegade 1.6 E-TorQ EVO Sport available with £395 Advance Payment with Alpine White paint included. Advance Payments are correct at time of going to press and subject to orders being placed by 31st March 2017. Not available in conjunction with any other offer. Terms & Conditions apply. Offer may be varied and withdrawn at any time. Jeep® is a registered trademark of FCA US LLC.
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Motability events confirmed for 2017 charge, with free parking, and will play host to Motability Scheme advisors who will be on hand to answer your questions, as well as representatives from Scheme partners like RAC, RSA and Kwik Fit. For more information, head to www.motability.co.uk/thebigevent.
DATES FOR YOUR DIARY The Big Event Manc hester 5 AND 6 MAY 2017 One Big Day Exeter 15 JUL 2017 One Big Day Harroga te 12 AUG 2017 One Big Day Peterbo rough 9 SEP 2017 One Big Day Edinburg h 23 SEP 2017
RISE IN NUMBER OF DISABLED PEOPLE IN WORK GOVERNMENT STATS RELEASED IN February showed that the number of disabled people in work has risen in the last year. The Department for Work and Pensions figures show that 292,000 more people are in work compared to last year – totalling over 3.5 million people, and an increased rate of 2.9%. The minister for disabled people, work and health Penny Mordaunt said: “It’s great that in the last year alone almost 300,000 disabled people have moved into work. Behind these
figures are thousands of individual stories of people who have seen their lives transformed, and of employers who understand the benefits of having a truly diverse workforce. “But there’s more to be done to close the disability employment gap. There’s a huge pool of talent out there, and we are helping employers to harness this through our Disability Confident scheme, ensuring that disabled people up and down the country are able to realise their potential.”
ONLINE DATING WEBSITE OKCUPID have finally removed an offensive question from their survey process, following a year-long campaign by learning disability charity Mencap. For almost a year, OkCupid refused to remove the question: “Would the world be a better place if people with low IQs were not allowed to reproduce?” After Mencap released a video to tie in with the #NotOkCupid campaign showing people with a learning disability reacting to the question, the worldwide dating site finally removed it. Mencap campaigns support officer Ciara Lawrence, who has a learning disability, said: “I was really happy when I heard that OkCupid’s CEO Elie Seidman had told journalists they would finally delete the question. But it was a bad and good moment – I am worried that, even now, OkCupid has never spoken directly to campaigners with a learning disability, answered our questions or said sorry for the harm this question has caused. “I hope that this is the first step on Mencap and OkCupid working together to make OkCupid open to people from all backgrounds, because everyone deserves the chance to find love, including people with a learning disability.”
PIC: © MOTABILITY; MENCAP
DISABLED PEOPLE AND THEIR families keen to get more information on their motoring options have plenty of choice this summer, with the Motability Scheme announcing a programme of five One Big Day events in the months ahead. The Scheme is celebrating 10 years of the One Big Day events, showcasing the UK’s largest display of vehicles for disabled people. This year’s series kicks off with The Big Event, a two-day show in Manchester on 5 and 6 May, with One Big Day in Edinburgh, the Scheme’s first Scottish event, rounding things off in September. The events are all run free of
Dating site scraps discriminatory question thanks to Mencap campaign
It’s not long before the weather will be warming up for springtime – so why not take advantage and get to grips with nature in your garden? We take a look at accessible options for hopeful horticulturists
PRETTY POTS PACKED with blooms, hanging baskets adorning homes up and down the street, borders bursting with fruit and veg – there’s something quite satisfying about having a gorgeous garden. If you’d like a bit more than a stretch of grass at your back door, spring is a great time to get into gardening. It’s the time of year when the plants and trees awake from their winter slumber and everything looks that little bit greener and fresher – so you’ll quickly see the fruits of your labour in your back yard! But how accessible is it? Gardening can be hard work. Hoeing and mowing, weeding and pruning, it can demand a lot of strength, and often takes a lot of time. If you have mobility issues, weakness in your hands, access requirements or tire easily, the idea of an afternoon deadheading roses can seem exhausting – but there’s lots out there to make the practice more accessible and enjoyable.
OVERCOMING OBSTACLES First of all, think about any access issues you might face. There’s a huge range of different tools available to make gardening an option for all. Look at the layout of your garden first. If you use a wheelchair, wheeling across the grass might not be straightforward, so think about ramps and widening paths. Look into raised beds to avoid bending, and don’t be afraid to ask for help too. There are lots of specialist tools on the market to make life easier. You can get tools with a softer grip, lightweight ones, long-handled tools if you have problems bending, grabbers to help you pick things up from the ground, knee pads and cushioned kneelers to help you get comfortable on the ground… The options are endless! Take a look at what’s on the market and get information on selecting the best tools for your needs at charity Thrive’s Carry On Gardening site (www.carryongardening.org.uk). Simon Gibbins from Lincoln saw access as a potential issue in his own garden and was inspired to do something about it. Once a keen gardener, his wife found bending to plant and tend to flowers almost impossible after an accident left her with a bad back. So Simon did his research and came across the practice of straw bale gardening. ALTERNATIVE OPTIONS “It was practised a little bit in America,” he explains. “I looked further into it, and they weren’t actually pushing it for people with bad backs, but it seemed perfect for that use. You don’t need soil. You can do it on concrete. Anywhere. It’s wheelchair-friendly. Every operation that’s involved in straw bale gardening,
you can do from the sitting position.” Straw bale gardening is exactly what it sounds like – you can plant flowers, plants, fruit and vegetables into a specially treated bale of straw and watch it flourish. Simon has now set up his own company, StrawBaleVeg, which sells all the equipment you need to get started as a straw bale gardener. “It’s not difficult, but it’s not straightforward,” Simon explains. “You get the straw bale and you have to condition it, or ‘mature’ it as I call it. That involves soaking it in water and then putting soil conditioner or organic compost into the bale to get the bale composting so that when you put your plants or seeds in, there’s something there to feed the plants on. You then have to ‘feed’ it daily before it’s ready to start planting in two weeks later.” Simon’s seen great success with the practice, and says just about anything can be planted in a bale, including potatoes, tomatoes and cucumbers. The beauty of bales is that you don’t need a lot of space to get started – or even a substantial garden. You could even set up a bale on a balcony!
HELPFUL PROJECTS And that is one barrier which many face when it comes to gardening – a lack of garden itself. There are, however, projects up and down the country, as well as allotments, to get you involved. Start by investigating allotments in your area. You could be allocated a patch in a community garden to call your own and do what you like with (within reason). Many are run by local authorities, but some individual allotment associations also exist. Get in touch with your local council to see what’s available near you and to find out how to apply. Find out about gardening groups in your area too – operating at community gardens and allotments, these group projects are a great way of meeting new people and refining your skills as a gardener too. If you live in a flat, you could also look into the possibility of window box gardening. All sorts can be grown either inside on a windowsill or outdoors. Herbs, flowers – anything that’s not going to grow too large is fair game. And best of all? You don’t have to dodge the rain to deal with it! THE BENEFITS Now you know how to get to grips with greenery, you might be wondering what
the benefits are of getting involved. Aside from the sense of satisfaction you get from seeing your hard work literally grow from nothing, gardening has proven to have real mental and physical benefits. As well as the physical benefits from being outdoors and active, scientists have found that spending time gardening can reduce your blood pressure, increase brain activity and improve your overall mood. Thrive fully understand the benefits of gardening, and have gardening projects across the country specifically aimed at people with disabilities. The charity uses the practice of social and therapeutic horticulture, working with plants to improve your mental health, communication skills and thinking. Thrive have four regional centres – Beech Hill near Reading, Battersea in London, Gateshead and Birmingham.
Most individuals are referred to Thrive by social services or their GP, but you can also apply to take part individually. They run community-based Sow and Grow projects too, and have details of around 900 gardening projects across the UK, so they can point you in the direction of similar schemes in your area. You can find out more about what they do at www.thrive.org.uk. Being able to look at what was once a bare patch of grass to see gorgeous geraniums, radiant rhododendrons and even a vibrant vegetable patch is pretty satisfying – and it doesn’t stop when the warmer months are over. There’s plenty to be done in your garden year-round! So what are you waiting for? Pull on your wellies, grab your secateurs and breathe in that fresh air. It’s not easy being green – but it’s definitely a lot of fun.
THE GARDENER’S CALENDAR What to do and when If you want to make sure you’re planting appropriately, we’ve taken a look at what you should be doing in your garden for the next few months.
StrawBaleVeg www.strawbaleveg.co.uk Thrive www.thrive.org.uk 0118 988 5688 Carry On Gardening www.carryongardening.org.uk Gardening for Disabled Trust www.gardeningfordisabledtrust.org.uk Royal Horticultural Society www.rhs.org.uk
Start feeding your lawn, and watch as the springtime blooms burst into life!
Regular lawn mowing is essential by May, and you can start thinking about trimming your hedges too. Remember to deadhead any flowers and shrubs that are past their best.
As the weather warms up, weeds will become more of a problem. Keep on top of your weeding from now on.
Keep watering your flowerbeds! This might need done daily if necessary. Keep an eye out for pests like caterpillars and greenfly, and get on top of harvesting any fruit and veg.
August is usually one of the hottest months, so watering is again essential, as is deadheading and weeding. This is your last chance to sow seeds too, so go for quick-maturing crops like lettuces and strawberry plants.
Making the impossible possible We look into the digital crystal ball to see how accessible tech is shaping the future for disabled people “IT’S A TINY, TINY human right,” Emma Lawton told the cameras during the filming of the remarkable BBC programme The Big Life Fix, “to be able to make that mark on a piece of paper. It’s your identity. And not to be able to do it is really upsetting.” The 33-year-old designer wanted to do what most of us can without thinking – she wanted to put pen to paper and write her own name. LIFE CHANGING Soon your clothes might be able to communicate Emma was just 29 years old when she was with your home – ‘speaking’ to your heater diagnosed with early-onset Parkinson’s disease. or popping on the kettle when you begin In the years that followed, the tremor in her to feel a chill. Researchers are also investigating right hand grew progressively worse, making opportunities in the microencapsulation of her everyday life as a professional graphic drugs. Medicine will be stored in the fabric designer an unbearable struggle. That was until of your clothes and then released directly she was introduced to inventor Haiyan Zhang onto the skin when biometric sensors detect during the filming of the BBC2 series. that you are becoming more stressed Haiyan created a wristband that would or restless. deliberately cause Emma’s arm to shake. The Developments in voice activation technology device worked by distracting Emma’s brain, and are already beginning to revolutionise life for remarkably, allowed her to write her name for people with disabilities. Eventually, talking the first time in years. Today both Haiyan and dashboards will let you know where you are Emma are hopeful that, with more trials, the and when to get out of your driverless vehicle, invention can go on to help millions of people. and it’ll soon be the standardised practice But it is not just Parkinson’s patients who that household appliances will respond to can benefit from technoligical developments. verbal prompts. The possibilities for merging And don’t think this clever technology technology, biology and the will only be available to those with human body are set to change OVER TO YOU millions in the bank – progress is the future for millions of What would you already available in the form of people with disabilities and like to see scientists apps that you can download to long-term illnesses. invent to help you your smartphones and tablets for with your day-to-day little to no fee. CLEVER CREATIONS needs? Email editor@ The technological world has so By 2050 it’s estimated that enablemagazine.co.uk much potential – and people with nanotechnology will exist to with your ideas! disabilities worldwide are waiting allow manufacturers to embed eagerly to see what comes next. function into articles of clothing.
THE BEST APPS VizWiz will help you find out your location and more about your surrounding area without having to ask for assistance. MoneyReader uses your phone’s camera to tell you what denomination of note you’re handing over. An essential if you are partially sighted and travelling alone. Talkitt is a nifty app which translates unintelligible pronunciation into understandable speech, allowing people to communicate using their own voice.
Life as a
PUPPY PARENT Dogs are more than just man’s best friend – for some, they’re a vital source of support and care. But who are the amazing people who help to train these special pooches? e c at to one u y arent to ﬁnd out more WHEN GUS, 74, first set eyes on Osborne, she knew he was special. But even she had no idea quite how life changing one pup could be. Before Osborne, Gus was a newly retired mum-of-two looking to give something back. When she saw an advert calling for ‘puppy parents’ at Canine Partners’ satellite training centre in Chelmsford, she knew it would be the perfect fit. Canine Partners is a UK charity which trains and provides assistance dogs for people with disabilities. These talented pups can carry out a variety of day-today tasks, giving their human partners a renewed independence and greater quality of life, as well as security and companionship. Puppy parents are needed to help train them basic skills before they go on to advanced Canine Partners training. “It meant I could have a dog around the house again while also indirectly helping someone who needed it. And I haven’t looked back,” says Gus. “It’s extremely special when you see this small, energetic, playful and soft being with that unique puppy smell, turn into a beautiful well-behaved and obedient dog.” TRAINING For 13 months Gus taught him all the basics he needed for his important job – from making sure he was well behaved on public transport to visiting busy spots like supermarkets, cafes, restaurants, shopping centres and parks. Osborne was even a regular visitor at Gus’ church
service on Sundays. As a puppy parent, Gus was also responsible for taking Osborne to puppy training classes, and hosted regular visits from trainer Emily Lawrence who guided her through the charity’s reward-based training. Then, when Osborne was 15 months old, he left Gus to begin his advanced training at Canine Partners’ training centre in West Sussex, where he developed the skills he had learned with his puppy parent. Though Gus was sad to see Osborne leave, she admits the hardest part was waiting to hear whether he had passed his assessment to become a fullyqualified assistance dog. “People say they would struggle to give the dog up when it’s time for them to move on to the next stage of training. But for some reason it’s not difficult for me,” says Gus. “You’ve got to think that there is somebody out there who needs some companionship or some help with their day-to-day lives. It drives me on.”
ABOUT PUPPY PARENTS We speak to Canine Partners to find out more about becoming a puppy parent.
ESSENTIAL SUPPORT Now aged six, Osborne is a fullyqualified assistance dog who provides essential care, opening doors and even fetching help in the case of an emergency for his new owner. Glyn, 71, has MS and his partner pup has provided him with some much-needed relief and support. “He has changed my life,” says Glyn. “The things he does for me save my energy for him. I laugh and cry every day with happiness. From when I wake in the morning, to when I go to bed, Osborne is there for me.” Glyn and Osborne even receive regular visits from Gus, and the three have become the best of friends. “I
became friends with Gus from the moment Osborne came into my life,” explains Glyn. “She has stayed in touch and when she visits, he always remembers her. “I thought it was important that Gus remained a part of Osborne’s life and I’m grateful to her for everything she has done to make Osborne the fantastic dog he is.” Since Osborne, Gus has gone on to look after five more puppies and is eagerly awaiting her sixth. The experience, she admits, has changed her life. “You don’t need to be an expert dog trainer. I was a complete novice when I started,” says Gus. “But it brings such a sense of achievement when I get to the end of my role as puppy parent and the dog eventually goes on to make such a huge difference to disabled people’s lives.”
FIND OUT MORE
For more information or to apply to be a puppy parent, call 08456 580 480, email firstname.lastname@example.org. uk or visit caninepartners. org.uk/get-involved/ volunteering/ puppy-parents.
WHAT IS A PUPPY PARENT?
Puppy socialisers are called puppy parents because they provide our puppies with the love, care and skills to get ready for ‘big school’ – just like any parent would for their child.
WHY BECOME A PUPPY PARENT?
Being a puppy parent is a highly rewarding, challenging but fun opportunity, as it enables you to learn fundamental puppy training skills, attend puppy classes in your local area and meet like-minded dog lovers. Best of all, you’ll play a vital part in transforming the life of another person.
WHO CAN BE A PUPPY PARENT?
All puppy parents must be aged 18 or over, be at home most of the day, and not work full-time. Parents should also have a secure, dog-friendly garden, have the stamina to manage an active puppy and be willing to take the puppy to different places for socialising and training.
WHAT SUPPORT WILL YOU RECEIVE? Puppy parents receive full ongoing support, both at their homes and at puppy training classes. Food, equipment, vet bills and temporary holiday care is also provided.
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With new research showing that one in three parents of a child with a learning disability are in ‘distressed relationships’, we take a look at why this is the case – and what support is out there 20
BECOMING A PARENT IS life changing. Everything you knew, or thought you knew, changes overnight. You go from being relatively carefree to having another life to worry about – it’s thrilling, exciting and terrifying all at once. But when your child has a disability, things can be even more complex – and it can have a
real impact on various different aspects of your life, including your relationships. Recent research from Relate, Relationships Scotland and Mencap has shown that one in three parents of a child with a learning disability are in distressed relationships – that’s compared to less than a quarter of other patients.
“What a distressed relationship means is quite a severe level of relationship problems, which has a clinically significant negative impact on the partners’ wellbeing,” explains Dr David Marjoribanks, senior policy and research officer with Relate. “People who are in distressed relationships are three times as likely to suffer depression and twoand-a-half times as likely to suffer an anxiety disorder.” DIFFICULTIES The study, which is part of wider research being carried out by Relate into the state of relationships in Britain today, showed that parents reported difficulty in finding childcare, increased money worries, were less likely to find time to spend together and feelings of isolation – all factors that have a negative impact on their relationships with their partner, family and friends. “What we found was quite a concerning, bleak picture of often unnecessary strains on their relationships,” explains Dr Marjoribanks. “All relationships come under strain but it was quite clear that parents who have a child with a learning disability seem to be coming under extra pressure on top of that.” Mum Donna Elston, from Worthing in West Sussex, understands this pressure. She and husband Daniel have two children – David, who is seven, and Jessica, who is five. David has autism and a learning disability, and was diagnosed at the age of three – and Donna admits that his needs have been difficult to handle at times. “Because Daniel works nights, and I’m with David most of the time, it can be quite hard and you start thinking things like, ‘He’s had an hour more sleep than me, I’ve been up all night!’” she admits. “It’s difficult. You do get sleep envy. It feels so unfair sometimes.” NOT ALONE Donna and Daniel aren’t alone in facing issues like this. The research has shown that only a quarter of couples find time for a regular ‘date night’, while parents of children with learning disabilities are 50% more likely to consider divorce. So why is this the case? According to Dr Marjoribanks, it is all down to support – or lack of. “There’s a number of different
“All relationships come under strain but it was quite clear that parents who have a child with a learning disability seem to be coming under extra pressure on top of that” Dr David Marjoribanks, Relate challenges, but the overwhelming picture that came out of the data was that the challenges are essentially the same ones that any parent faces,” he says. “If the right support is in place, there’s no reason to think why parents of a child with a learning disability can’t enjoy the same good quality relationships as others.” For Donna and Daniel, it took two years of fighting with social services to be assigned a disability social worker who helped them get support in place. Now, they get direct payments through their local authority which pay for respite support with a personal assistant – who is also one of David’s teachers. “They’re with him all the time at school, so they know his meltdowns and they know his triggers,” she says. “I’m happy because I know that he’s fine. We can go out on our anniversary. If there are things David doesn’t like to do, the rest of us can go out and do it.” One of the biggest challenges parents of children with learning disabilities face is that of isolation and loneliness – 22% of the parents surveyed said they often feel lonely, and one in six say they don’t have any close friends. “My daughter goes to mainstream and I don’t like doing the school run because I don’t know what to talk to people about,” Donna says. “I know how to talk about autism – I can go on all day about that! Through support groups and speaking to other people in similar situations, it led me to Facebook and finding people in the same situation. You think there’s no one else out there going through it.” GETTING HELP And that’s the important thing for parents to remember – they aren’t alone,
and support is out there. Relate, for instance, can offer relationship support for couples in a variety of situations, including online and telephone-based support, as well as face-to-face sessions. “We can help anyone at any stage in their relationship – we help more than a million people every year to strengthen and improve their relationship,” says Dr Marjoribanks. “For people who aren’t at that level of pressure just yet, there are things that parents can still do, short of coming to relationship support. It can be something like making time for each other, without going out for a fancy meal. Checking in regularly with each other. Being aware of each other’s emotions. “Mencap, who we partnered with, have a resource on their website called the Family Hub where parents can talk to other parents and share their experiences. That kind of peer support can be part of the important network of support as well.” And getting practical support too is crucial. Donna has experienced firsthand how important it is – and she’s keen that other families reach out and get what they’re entitled to, to help strengthen relationships and keep families together. “That’s the most important thing for a child with an additional need – a family,” she says. “Rows aren’t good. If we have a difference of opinion, we talk about it. We don’t shout. Because that doesn’t help anyone. As you grow with your child, you’re learning different things. The number of times I hear, ‘Will I ever get used to this? Will it ever get easier?’ It does get easier in a way. Given time, and as much help and support for your child as you can get, the battles are worth it.”
i INFORMATION AND SUPPORT
Relate www.relate.org.uk 0300 100 1234 Relationships Scotland www.relationships-scotland.org.uk 0345 119 2020 Mencap www.mencap.org.uk 0808 808 1111
LIVING ON THE EDGE:
HOW DO RURAL SETTINGS DEAL WITH DEMENTIA? Outside of big cities, are people with dementia receiving the right care and u ort ir ty c en ie inve tigate and ﬁnd ome ur ri ing re ult
TALKING ABOUT DEMENTIA CAN be hard. I know this because, like thousands of other families around the UK, I have first-hand experience of how this devastating disease can impact a family. My grandfather is 85 and has struggled with dementia for the past four years. He lives in a small fishing village outside of Dundee – big enough for him to get lost, but small enough for people to raise an eyebrow and talk about him when he goes out with masking tape around his old shoes, or fumbles for change in a badly sewn pocket. But behind the eye-rolls and the tuts, they’re always looking out for him. They know whether he was eating his Meals on Wheels and when he lets the cleaner in. They know when he buries his lemonade bottles in the garden – don’t ask – or when he’s forgotten his way home. We’ve considered moving him
closer to us, into a big city, but would this help his condition? Or, when it comes to dementia, does it really take a village? “Dementia can be a particularly difficult disease to deal with – in any kind of situation and setting,” admits Ian Weatherhead, a senior Admiral Nurse with Dementia UK. Ian has worked in nursing for over 40 years, providing support for families in areas from rural parts of north-west Scotland to London. “People will often try and hide things and may isolate themselves a bit more but generally people will be looking out for each other. If they don’t see you for a few days, they’ll be popping round to see you. Everybody knows everybody, and within the health setting they know what to look out for.” COMMUNITY SPIRIT Isabel Pritchard, who works with the Western Isles NHS Board in Benbecula, agrees that community spirit in small areas has huge advantages. “It’s more difficult for people to hide their symptoms if they live in a closer-knit community. People tend to know each other and their lifestyle and so can be more aware of any change.” She says that on Benbecula – which has a population of 1,249 – neighbours think nothing of knocking on people’s doors, checking in, helping with chores and driving people to appointments, even when the island is hit with 100mph winds. This culture of keeping tabs on neighbours means that it is far easier to pick up on subtle changes in an individual’s behaviour – and it helps to intervene quickly when there is a problem. Ian says: “With very early support and intervention from the point of diagnosis it is very easy to engage and include the person with dementia.” While diagnostic rates for dementia are improving, the disease remains untreatable. The most promising recent drugs, developed using theories about the disease on which the research community has fixed two decades of hope, have failed. But Ian is hopeful that while there is no cure, those who can remain in familiar environments have a far better chance of managing their illness for longer, continuing to feel like an important part of the community. “They may have lived in that one area
It’s estimated that, by 2025, over 1 MILLION Brits will be living with dementia for a long time and know it very well,” says Ian. “It can maintain them a bit longer because they still have that safety and structure around them.” He also credits the ‘creativity’ of social services in remote areas for helping to support those with the illness and their families. “The small communities that I have worked in have been incredibly creative as well as supportive,” he says. “GPs would think nothing of doing regular home visits and even weekly community rounds were commonplace. They are afforded more time to get to know patients better. And rather than building one individual resource centre for one particular purpose, they create half a dozen services in one environment. It can be much more realistic and cost effective. We could learn in cities from that kind of model in many ways.” DOWNSIDES Ian admits there are downsides to living in a small community. “Transport seems
to be one of the greatest problems that we see within a rural setting,” he explains. “If people are unable to drive or if they lose the ability to drive, that can quickly isolate people. You can’t just jump on a bus or grab a taxi.” Most concerning of all, according to Ian, is that community support is simply not sustainable. “The older communities seem to have an incredibly supportive network,” he says. “But we are seeing that change – over time younger people are moving into the cities from rural settings and we don’t see the same cohesiveness and closeness and support for each other that perhaps there once was.” In fact, those living in cities are 12 per cent more likely to develop dementia as a result of traffic fumes, according to a recent study of more than six million people. By 2025, the total number of individuals in the UK living with dementia will have exceeded a million for the first time – two for every doctor and nurse employed in the NHS. WHO CARES? The simple fact is that we are living for far longer but without the crucial communication links forged by previous generations. And without a cure, and with the number of patients rising, we really can’t afford to let go of the support from the community around us. “Right now we are wholly reliant on family members, neighbours and friends to provide the vast amount of caring,” says Ian. “They are saving us the best part of £30 billion a year on services by providing voluntary, free care. If those people were to turn around and say, ‘I can’t do this, I’m not going to do this any more,’ then our whole social and health care system would just collapse within a day. That’s how bad it is and I just don’t see that improving any time soon. “Look at the cutbacks that we are constantly seeing – the systems are stretched and struggling as they are. It’s only getting worse, not better. It will need something major.” i
To find out more about support services for people with dementia, head to the Dementia UK website at www.dementiauk.org
To improve all our health, NHSScotland is improving the way it uses information from GP patient records.
It helps me. GP, Lanark.
The way information from GP patient records is used to help plan health and care services in Scotland is improving. Being able to use this information will mean NHSScotland can improve the quality of care, better plan services for people with health needs and support research into new treatments.
You have a choice about your patient record being used in this way. To find out more go to spire.scot or call NHS inform on 0800 22 44 88.
SKILLS DEVELOPMENT FOR
EMPLOYERS AND PAS Becoming an individual employer can be hugely liberating – but how do you ma e ure t at ﬁr tly you re up to the job as an employer, and, secondly, that your staff are trained and ready for their new role? We look into the u ort t at out t ere
ONE OF THE GREAT THINGS about being an individual employer and recruiting your own personal assistants is how flexible it is – and how it centres around your needs. You get to choose who works for you, what sort of duties they’ll be carrying out and how often you see them. But for many, the problem lies in finding PAs with the right skills and experience to match up to their wants and needs. If you need someone with a particular background, or knowledge of a certain condition, it can make recruiting a much harder task. And what if you find someone you really like but they don’t quite have the skills you need?
VARIETY Fortunately, there’s support out there to ensure that the people you hire are up to the job. Skills for Care distribute money on behalf of the Department of Health to pay for training for PAs. The cash can be used in a variety of ways – it’s all about what’s best for you as an employer and the person you’ve hired. “The great thing about the funding is that it gives employers and PAs the opportunity to choose their own learning, so it can be tailored to the specific needs of the employer,” explains Jenna Wood at Skills for Care. Training can take place in the person’s
home, at local training centres or colleges, through private training companies, via local disability and care organisations or even online. In terms of training for PAs, Skills for Care have funded a range of courses, including moving and handling, first aid, health and safety, communication, including British Sign Language, condition-specific awareness for things like dementia and autism, as well as Diplomas in health and social care and Diplomas in leadership and management. TAILORED Kelly is a PA who supports Mrs Wright, who has dementia, to live in her own home. Mrs Wright uses her personal budget to employ a team of PAs to care for her day-to-day, with the support of her husband. He recently applied for funding to pay for training for Kelly and the rest of the team. “When Mr Wright employed me to care for his wife, I had no previous experience or qualifications,” Kelly explains. “However, he applied for funding from Skills for Care to pay for training with Bridgwater College. This allowed me and my colleagues to do “Training undertaken by employers training that was specifically tailored to can vary, but mostly centres around Mrs Wright’s care needs. being an employer and management “I was very nervous when I first of PAs as well as use of technology started training as it was out of my to manage payroll,” explains Jenna. comfort zone. However, applying for “Employers often accompany PAs to the funding meant the training training on health and safety, was personalised to Mrs care planning and risk Wright’s care needs and WHAT’S MORE… assessments too.” the tutors made me feel User-led organisations can The different courses very comfortable and also apply for funding via Skills funded recently have supported. The tutors for Care to deliver training ranged from being a would also come to to local PAs. Skills for Care good boss to mediation my place of work, usually launch this funding training, payroll which was brilliant as around March/April time, management to computer this meant we could subject to confirmation studies – there’s a real do training around our from the Department of Health. variety or things out there shifts and there was no which can help individuals need to find PAs to cover.” become better employers, and to Kelly recently passed her get a handle on how the system works. Level 3 Diploma in health and social care, and is now working towards her BENEFITS Level 4 qualification. In 2015-2016, Skills for Care funded over 800 qualifications and courses for EMPLOYER TRAINING employers and PAs. They can choose And it’s not just about making sure training to suit their situation, and what PAs are skilled – Skills for Care also they want to achieve. And best of all? distribute funding to pay for the training This training has a lasting impact. PAs of individual employers. If you’re new have more to put on their CV for future to the world of being an employer, you’ll roles, the care workforce is stronger have a lot to get your head around.
“The great thing about the funding is that it gives employers and PAs the opportunity to choose their own learning”
Jenna Wood, Skills for Care and employers learn new skills which can help them further down the line, whether that’s when it comes to hiring more care staff, or in terms of their own career. Funding for 2017-2018 is due to open for applications in April or May, subject to confirmation from the Department of Health – and it’s well worth looking into according to Mark, who supports his mother to employ a team of nine PAs. “Training is an invaluable component of the care team,” he says. “I know my mother, as a trained nursing sister and midwife, would think it is wonderful and she is the real beneficiary even if she is not always aware. As someone who supported and trained others she would be very proud, as well as grateful. The family feel very reassured by the support our training company provide, and so do the team.”
For more information on funding to train PAs or to upskill yourself as an individual employer, head to the Skills for Care website at www.skillsforcare.org.uk
The right to
GROW UP Being the parent of a disabled child can be incredibly hard. Maybe that’s not said enough. Of course you love your child, of course you want them to be well and happy. But how far would you go to make life easier for your child? Kirsty McKenzie investigates
TEN YEARS AGO, a couple from Seattle approached doctors with a simple but controversial request. Could their 10-year-old disabled daughter Ashley be given medication to stop her from growing any further? Their child had the mental capacity of an infant and couldn’t speak, eat, walk, sit or hold her head up without assistance. Her family nicknamed her Pillow Angel because of all the hours she spent propped up by cushions. They wanted Ashley to remain small enough to be held and lifted out of bed without much assistance. They also requested that their daughter have her breast nodules removed and be given a hysterectomy to spare her the discomfort of painful periods that can accompany high doses of oestrogen. The so-called “Ashley Treatment” went ahead. But following uproar from disability rights groups, the
Seattle Children’s Hospital admitted that they ought to have obtained a court order before allowing the child to be sterilised. Now, of the three interventions, only growth attenuation therapy – a high dose of hormones pushed into the body during early puberty to stunt the child’s growth – remains part of current approaches. ON THE RISE A decade on, and despite the controversy surrounding growth attenuation, the treatment is on the rise. In a recent survey by the Pediatric Endocrine Society, most of whose members are in the US, 32 of 284 respondents said they had
prescribed growth-stunting hormones to at least one disabled child. The number could well be higher, but many doctors feel forced to remain silent about implementing such a controversial practice. Dr Philip Zeitler, chairman of the Department of Endocrinology at the Children’s Hospital Colorado in Aurora, is one of a number of paediatric endocrinologists who “dares to be public”, and offers the therapy to families who are worried that the children are going to get bigger and heavier, to the point where they will be unable to care for them, undertake transfers or include them in family activities. “They are concerned about the
“It’s definitely easier to lift and manage a person who is smaller. But it doesn’t give you the extra hours of sleep at night that you need to get through the day” Claire Heller who is a vocal opponent of the therapy. Claire, whose daughter and stepdaughter are both in their twenties and have severe disabilities, believes a disabled person’s size has no bearing on the pleasure they feel or their quality of life. “It’s not possible to quantify someone’s life being better because they are small,” she argues. “My daughters get hugs and kisses every day, I hold their hands and speak to them lovingly. I believe this is appropriate and satisfying to most adults, don’t you?” RESPECT For Claire, limiting a child’s growth is invasive and unnecessary on a number of levels. “I could give you legal arguments, logical arguments, health arguments, moral arguments, but none of them satisfy and can be
Growth attenuation: the facts • Growth attenuation (GA) treatment was first prescribed in the 1950s and 60s to girls that were expected to grow extremely tall.
and the onset of periods in females that is then stopped through the medicating of progesterone.
• The hormone treatment involves the short term use of oestrogen to rapidly close the growth plates of the long bones in order to decrease the child’s stature.
• The therapy itself is inexpensive – about $20 a month – requiring only a generic medication, a routine ofﬁce visit, and a limited number of routine laboratory tests for monitoring.
• The side effects include breast development in boys and girls, lowering of anti-clotting factors
• Currently, the lasting impact of the treatment is unknown as there have not been enough children treated.
countered in some way,” says Claire. “In thinking about this over the years I have come to one conclusion as to why I am opposed to the treatment: respect. I have a deep and abiding respect for my daughter as a person in her own right. She is not an extension of me, even though our lives are forever and inextricably intertwined. Her disabilities do not give me permission to assume I know what she wants, nor do they give me the right to overextend my duties as a parent to invade her personhood in that way.” Susanna argues that it goes beyond that – for her family, this isn’t a matter of opting for an easier life for themselves and easing the strain on themselves as carers. It’s about being able to give their son the best possible care, support and quality of life. “With the treatment, he will not get so heavy that we need two adult men to lift him, or adequate hoists and elevators which we all tried before but are highly impractical and in real life hardly used by any caregivers,” she says. “[With Leo being smaller], we will get better caregiving support. The heavier my son gets, the less likely it is that we’ll be able to find a care service to support us. I phoned 100 agencies in the area where we live and there is nobody willing to help out – even though he is only nine years old. Everything gets messier.”
* NAMES CHANGED
combination of the child getting bigger and the family caregivers getting older, and what this will mean for the sustainability of family care,” says Dr Zeitler, who has overseen the growth attenuation therapy process for about 20 children. “One family told me that their son loves to sit in their laps, and they worry about the day that he will be so big that one of his few obvious joys will be unavailable to him.” Susanna’s son Leo* is currently going through the growth attenuation process. He is nine years old, quadriplegic, can’t walk, talk, move, eat or drink. For the family, who live in California, it was a matter of finding a solution that best met his support needs after a lot of research and trying different options. “Our decision to undergo the treatment is for the overall benefit of the family,” says his mum. “Our life has changed drastically, especially having to care for our child 24/7. As my son is growing, the most common question people ask is, ‘How will you ever manage in the future with his growing height and weight?’ This was, beside many other reasons, the main reason to go on the treatment.” This isn’t a decision they’ve taken lightly – and it’s not one which many understand. For some families, the therapy acts as a real lifeline, and takes away a lot of the fear for the future – but it remains a divisive subject amongst parents of disabled children, with some feeling it is a breach of their basic human rights. Mum Claire Heller is one parent
OVER TO YOU This is a divisive subject – but what are your views on growth attenuation therapy? You can join the conversation on social media – @EnableMagazine on Twitter – or email us at email@example.com We’ll be publishing your views next issue – so get in touch.
MISINFORMED Dr Zeitler is wary that the ‘uproar and sensitivities’ around the topic have led to misinformation – and he’s keen to point out that this absolutely isn’t an option, or even a consideration, for the vast majority of families. “There is not always recognition that this therapy is reserved for those children who are so severely and permanently disabled that they cannot provide any of their own care,” he says. He’s concerned that the backlash to the therapy, which is not carried out here in the UK, ‘reflects a misunderstanding of the nature of disabilities present in the children’. “This therapy is reserved for a very particular set of circumstances,” says Dr Zeitler. “It is not broadly advocated for cognitive or physical disabilities.” He would however like to see the stigma removed from the therapy so that both physicians and families can speak more openly on the topic, and so that the outcomes can be reported more widely.
“Providers must be able to share and collaborate to be sure that this therapy is truly in the children’s best interest, and this can’t happen if there are only anecdotal experiences.” Claire believes, however, that attitudes towards disability in modern society are partly to blame for the rise in families opting for the treatment. “Disability is not a problem to be
solved,” says Claire. “It’s definitely easier to lift and manage a person who is smaller. But it doesn’t give you the extra hours of sleep at night that you need to get through the day. It provides no solutions to inaccessible education and for society’s disdain for disabled people. None of this is solved – only size. Is that not an extreme price to make a child pay for a caregiver’s convenience?” Yet she is sympathetic to the families who have turned to such extreme measures. “The first years of dealing with a child with severe disabilities are overwhelming,” says Claire. “These parents love their children with all their heart. They want what they believe is best for their child. I can honestly say to these parents that, with time, they will view everything differently and there is nothing like the pride you have in seeing your grown-up daughter or son, regardless of the severity of their disabilities.”
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INDEPENDENT LIVING GUIDE From housing to motoring, everything you need to know about boosting your independence Supported by
HOUSING: KNOW YOUR OPTIONS
From adaptations to supported living, we take a look at what’s out there
THE KEYS TO INDEPENDENCE
We find out about the Motability Scheme, the affordable car leasing scheme for disabled people
TALKING ABOUT TELECARE
The clever services enabling people to live in their own homes
RAIL FA F FARES RES
Check to see if you qualify
0345 605 0525
or pick up a leaflet at any National Rail station
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INDEPENDENT LIVING GUIDE
Let’s talk about If you’re keen to stay in your own home and boost you freedom and independence, technology could be the answer. We take a look at the support that telecare can offer
WE LIVE IN A WORLD where our fridges can send reminders to our smartphones if we’re running low on milk and you can have your favourite songs blaring through your house by simply speaking to a small digital device – so it makes perfect sense that technology is starting to play a bigger part in the world of care too. Thanks to a range of clever gadgets and gizmos, more and more older and disabled people are able to live independently in their own homes, without the need for family, friends or personal assistants checking in on them throughout the day.
you themselves, or send an alert to a designated family contact nearby. Telecare can take a number of different forms. Personal alarms – either worn round the neck or wrist – are one of the simplest forms. They let you call for help literally at the push of a button if you find yourself stuck or you’ve had a fall. It’ll be connected wirelessly to a base unit, which will send the message to the service provider. Many operate a two-way system, so you’ll be able to speak with the contact centre – and if it’s a false alarm and you’ve bumped your button by accident, they’ll be pleased to hear you’re OK.
DISTANCE SUPPORT These smart devices come under the heading of telecare – support and assistance provided at a distance via the wonder of communication technology. Sensors, alarms and tracking technology are all used to monitor a person’s activity round the clock and flag up any worrying behaviour. The device will be connected to an external contact centre who will either come out and check on
SUPER SENSORS Other services use sensors around the home to monitor unusual activity. Bed and chair sensors monitor where you are in your home – if, for instance, you don’t get to bed around your usual time, that will get flagged up, or if you spend much longer in the one position than usual. With some systems, like Canary (www. canary.co.uk), sensors can be placed in different rooms too to see exactly where
you are. They might detect the front door opening and closing at unusual times, track if you’ve been to the kitchen yet, and look for changes in normal behavioural patterns. You can also get flood sensors which are good if you’re in danger of leaving water running, or you can get smoke and carbon monoxide detectors if you’ve lost your sense of smell or aren’t able to respond quickly to their alarm – some of which flash rather than make a noise if you have a hearing impairment. Telecare can take a variety of forms to meet different needs – and the services on offer are evolving every day. It can be a really positive step for those keen to maintain independence – and gives real peace of mind to those closest to you too.
There are 135 telecare centres accredited by the Telecare Services Association. Head to www.tsa-voice.org.uk to find a service near you, or speak with your local social services department for support.
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INDEPENDENT INDEPENDENT LIVING LIVINGGUIDE GUIDE
The keys to independence WHAT IS THE MOTABILITY SCHEME?
WHAT KIND OF CAR CAN YOU GET?
Motability is a UK-wide affordable car leasing scheme, open to people in receipt of certain welfare benefits. Through it, you can either lease a brand new car for three years at a time, a scooter or powered wheelchair.
There’s a huge range of makes and models available through the Scheme, from the compact Volkswagen up! to large SUVs like the Suzuki Vitara. You can even get a wheelchair accessible vehicle on the Scheme. Whatever your needs and preferences, there’s something to suit.
In the past, disabled people got transport support from the government in the form of a blue ‘invalid carriage’, which wasn’t able to carry passengers. Disabled people felt that they were at a disadvantage – traditionally on lower incomes, they couldn’t afford a car like 40% of the population at the time. In 1976, Lord Goodman and Lord Sterling came together to come up with the idea for the Motability Scheme – and the rest is history.
WHO QUALIFIES FOR IT? The Scheme is open to anyone who qualifies for the Higher Rate Mobility Component of Disability Living Allowance, the Enhanced Mobility Component of Personal Independence Payment or the War Pensioners’ Mobility Supplement.
WHAT’S THE COST? That depends on what model of car you go for. The cost is split into two components – your weekly rental, and an Advance Payment. The weekly rental is all or part of your qualifying benefit, while the Advance Payment is an additional cost which usually applies to higher spec models. Insurance, breakdown cover, servicing and maintenance are all included – all you need to think about is fuel.
CAN YOU GET YOUR CAR ADAPTED? If you need adaptations, you can absolutely get your Motability vehicle altered to suit your needs, whether that’s in the form of adaptive equipment or add-ons, or more heavy-duty physical changes to the car. A range of adaptations are available free of charge through the Scheme, but you might need to pay a little extra for others, depending on your requirements.
WHAT DO PEOPLE GET OUT OF IT? As well as getting access to a car, Motability customers credit the Scheme with giving them a sense of independence and freedom. If you live in a remote area and can’t get access to public transport, or buses and trains in your area aren’t accessible, a car is almost essential – but for many, it’s just not affordable. The Scheme gives you that option in a cost-effective way.
PICS: © MOTABILITY
HOW DID IT COME ABOUT?
Across the UK, thousands of people are getting a new sense of freedom, all thanks to the Motability Scheme. So how does it work? We answered the most frequently asked questions
HOW DO YOU FIND OUT MORE? Simply give Motability a call using the details to the right, or you can pop into your nearest Motability dealership for more information – you can find a full listing online. It’s that simple!
Head to www.motability.co.uk, or call 0300 456 4566.
Glasgow Centre for Inclusive Living is proud to announce the development of 2 new innovative sources of information on homes, equipment and adaptations for older and disabled people.
For accessible homes, please visit home2fit.org.uk For aids and equipment, please visit adapt2fit.org.uk For more information please contact Grant Carson on firstname.lastname@example.org or 0141 550 4455
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INDEPENDENT LIVING GUIDE
It’s been a year since Argos put added focus on the independent living marketplace – but what has the team learned in that time? e retail giant ﬁll u in on t e la t 12 months WHEN ARGOS DECIDED TO start stocking a variety of independent living products in stores nationwide and through their website, it was an important moment for the high street. Disability had gone mainstream, and Argos embracing this was the first sign that the retail world is steadily becoming more inclusive. It’s a move which has been a success for Argos, but also boosted the independence of thousands of consumers. A year since the range of independent living products has been expanded, Argos has been
“Pretty much every corner of the home is covered by Argos, from riser recliner chairs to adjustable beds and mattresses” delighted by the response from the public – and the range continues to evolve thanks to customer demand. Pretty much every corner of the home is now catered for, from riser recliner chairs in the living room to adjustable beds and mattresses in the bedroom. The range also includes products for the kitchen, such as gripping aids and perching stools. And it goes beyond household aids: mobility products, clever technology and handy buying guides, to ensure that customers are making informed choices, are all available. LOOK AND FEEL After receiving a positive response to the range, the team decided to work on the look and feel of some of their products. Last year, they introduced two riser
recliner chairs (the Bradley and the Paolo) which fit in with existing Argos furniture suites, so your specialist chair doesn’t have to stand out. Recently, two more models were introduced with a heating functionality too. The team has been listening to customer feedback as well, to make sure the right items are available. The foot warmer (catalogue number 545/9254) has been a huge success, with lots of positive feedback appearing on the Argos website. One customer got in touch to highlight a specific product that wasn’t on offer at Argos, so the Independent Living team managed to find a supplier and arranged to have the Bath Grab Support sent to him. It’s now a part of the Independent Living range and available for all customers; proof that speaking up definitely pays off and benefits everyone. SUCCESS The range has proved so popular that more of the items are available in stores on the high street now, instead of solely being available to order for delivery from the website. Wheelchairs in particular have benefited from being stocked in high street stores, so purchasing is even easier. Most items which aren’t available in-store can be ordered and delivered either to your home or your nearest branch. It’s been a year of learning about the independent living marketplace for Argos, and it’s a range that the business is keen to expand upon and grow further. And with such a huge range of products just a click or store visit away, it’s never been easier to take control of your independence. So what are you waiting for? Head online and check out the full range now!
Check out the Argos Independent Living range online today at www.argos.co.uk/independent-living
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The latest in
ATEL is one organisation going the extra mile to give people with disabilities as much freedom and independence as o i le. e ﬁnd out more a out one o their newest products WHEN IT COMES TO living independently, technology has come on leaps and bounds in recent years, giving individuals the freedom and choice they want in the home. Assistive technology company ATEL offers a range of solutions for people with learning disabilities, physical disabilities, complex needs and behavioural issues, working with individuals and housing providers to ensure that people with additional support needs can live as independently as possible. This year, they’ll be showcasing some fantastic new products and services at Naidex in Birmingham which, founder Matthew Warnes says, will change the face of assistive technology. KEEPING TRACK One of the most exciting products on show this year is GrandCare, the latest in smart home technology designed to reduce care costs. A medical device, it can help family members and carers to keep track of elderly parents’ or care
home residents’ movements remotely throughout the day. GrandCare can prompt users to take medication, to eat or drink, as well as monitoring what users are up to during the day thanks to a series of detectors or sensors around the home – so the system will know if they’ve taken their medication or returned to bed after a night time bathroom visit. Each ‘rule’ is fully customisable so can be tailored to an individual’s needs, with alerts set up to notify designated family members if something isn’t quite right. GrandCare enhances social inclusion, allowing individuals who aren’t tech savvy to communicate with family and friends, as well as care professionals, via a ‘Video Call’ button. Other features include ‘letters’, which is similar to an email facility, and a memory aid function. GrandCare has been have seen substantial cost designed to put the end-user savings, GrandCare’s at the heart of the device, GrandCare is scheduling system has and has been built to just one of the innovative proved to be effective in be approachable and products that ATEL will be helping pensioners to intuitive. showcasing at Naidex from both remember and 28-30 March this year. To find carry out tasks.” PEACE OF MIND out more, head along to the With a real The system also has event and meet the team understanding of an online care portal at stand A60 – register for the important role for carers or family your free tickets at technology can play in members to log in and www.naidex.co.uk. health and care, ATEL have monitor what’s going on, an array of solutions to meet no matter how far away different needs – so head along to they might be. This system is the this year’s Naidex to find out more. ideal solution for elderly individuals living in a rural location – GrandCare You can find out more about the system can also prevent hospital admissions by at www.grandcareuk.com. monitoring their health, blood pressure, weight and medication. “Our GrandCare system has been i MORE INFORMATION designed to bring family members To find out more about GrandCare and peace of mind when caring for elderly ATEL’s other exciting products, head to relatives,” explains Matthew. “Already www.adaptivetechnology.eu used widely in the USA, where they
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YOUR HOME PLAYS A key role in your independence. You’ve got to be able to move about freely, feel safe, comfortable and supported. It’s your base, your hub – the place where you get to kick back, relax and be yourself. But, sadly, not everyone is able to do this. Research carried out by Leonard Cheshire Disability found that, of those with a mobility impairment keen to move to an accessible home, 54% said they were difficult to find. Meanwhile, a Mencap report found that three quarters of people with a learning disability live with family or in a registered care home, with 70% saying they’d like to achieve greater independence. And increased independence is achievable for many. Independent living doesn’t have to mean living on your own – in fact, for many, getting access to the right support and services is exactly what they need to be able to live independently. MAKING CHANGES For some, the key to independence is an accessible home. If you’re a homeowner already, you might be able to make adaptations to your current situation or invest in some different products. The most commonly-needed adaptations in the home are grab rails, bath or shower seats, showers to replace baths and special toilet seats – and you might be entitled to funding from your local authority for this through Disabled Facilities Grants (www.gov.uk/disabledfacilities-grants). If you rent privately, your landlord is entitled to refuse to make adaptations to meet your needs, although they will be able to apply for funding if they decide to go ahead. However, if you’re a local authority or housing association tenant (and some housing associations specialise in accessible properties), your landlord
will have to make adaptations, or offer you alternative accommodaiton. Finding an accessible home can be tricky, but more new-builds are being built to the Lifetime Homes standards, which incorporate certain features that make them easy to adapt. You can also search for homes, to buy or rent, through the Accessible Property Register at www. accessible-propety.co.uk.
GETTING SUPPORT If you’re keen to stay in your own home, it might be that you need some extra support to help you through. By contacting your local authority, you’ll be able to get a needs assessment, and they’ll determine what sort of support you might benefit from. This might be in the form of telecare solutions, certain products or homecare support, where a
If you’re after a housing solution that meets your needs and helps you maintain as much independence as possible, there are plenty of options out there. We take a look at what’s available Supported by
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70% of people with a learning disability would like to be able to live more independently care worker or personal assistant will visit your home to help with tasks like washing and dressing. If you’re assigned a personal budget by your local authority, or you have the funds to finance it yourself, you can hire personal assistants yourself either directly as an individual employer or through a care agency. This gives you a bit more control over who is working with you, what sort of tasks they help you with and you have more consistency too. You can find out more about becoming an individual employer at www.skillsforcare.org.uk. Supported and assisted living schemes are a great option for those who want their independence but aren’t quite able to live completely alone. These projects are made up of individual flats or houses – so you have your own property and, quite often, your own responsibilities like paying your own bills, cooking and cleaning – but support staff are on hand round the clock to help out where required. You’ll also have a personalised care plan, targets and goals, and staff will work with you to make sure you’re living the life you choose. Contact your local authority for information on what’s available in your area. Whatever your needs, there will be a housing solution out there to help you live as independent, dignified and fulfilling a life as possible – all on your terms. Start doing your research now to see what you could do. i
For more information on housing, care and support options, contact your local social services department to arrange an assessment of need. Based on this, they’ll be able to recommend products and services to help you live as independent, safe and secure a life as possible.
GETTING THE RIGHT SUPPORT TWENTY-SEVEN-YEAR-OLD Andrew Parker from Birmingham is one person who knows just how transformative getting the right living situation can be. Andrew was socially isolated to the point of not leaving his parents’ home when he was referred to Sanctuary Supported Living’s (SSL) Sandybanks supported housing scheme in Birmingham. Since living there, he has drawn up a personalised support plan with staff, and received help developing daily living skills, including learning to cook and managing his finances. The support has given Andrew the confidence to venture out on his own, and he now makes frequent trips to the gym, takes part in drama groups and plays sports with friends. His biggest passion is singing in The Choir With No Name, which works with homeless and marginalised people, prompting Andrew to audition for Britain’s Got Talent on his own.
Andrew said: “When I first moved to Sandybanks, I couldn’t do much for myself and I didn’t like mixing with other people. “I can do so much more now – I can cook, play football, cricket and go to the disco, which I really enjoy as I love to dance. I love going to my sessions with the choir, and auditioning for Britain’s Got Talent was amazing.” Sandybanks local service manager Parveen Rashda said of Andrew’s success so far: “Andrew used to be really isolated, as his learning disabilities meant he lacked the confidence to go anywhere or do anything by himself. “Although he didn’t reach the judging stage of the competition, applying for a national contest would have been unthinkable before he came here.” Anyone with a learning disability who wishes to access SSL’s supported housing services in Birmingham can visit bit.ly/BirminghamSupport.
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Making it work for you When it comes to being independent, transport has a massive part to play. But buses, trains and taxis sometimes get a bad reputation with regard to access. However, there are support schemes out there to make getting from A to B easier for those with disabilities. We take a look at what’s available
Transport providers are upping their game in terms of staff training and understanding. Some bus companies are now operating a card scheme which give details of your disability – if, for example, you’re hard of hearing or need reminding when it’s coming up to your stop. First (www.firstgroup.com), for instance, have a Better Journey Card which has phrases like ‘please help me find a seat’ or ‘please face me and speak clearly, I lip read’, and Arriva services also have a similar scheme in place in the form of Assistance Cards (www. arrivabus.co.uk). Get in touch with your local provider to see what they have to offer. Physical access is improving on bus services too. Some providers, such as Lothian Buses in Edinburgh (www.lothianbuses.co.uk) and Brighton and Hove Buses (www.buses.co.uk) have accessible buses, with low entrances, dedicated wheelchair spaces and high visibility handrails on board. Most local bus operators will have details of what access features are available on their vehicles, and if you call ahead, they’ll be able to advise whether or not they can meet your needs. You might be eligible for discounted travel in your area too, depending on your impairment. Contact your local social services department to see what you’re entitled to.
On the nation’s railways, access is steadily improving. Most trains have dedicated wheelchair spaces, lots of stations are being renovated to incorporate access features like lifts and handrails, and many services now have onboard announcements and LED displays announcing what station you’re at and other useful information for passengers who have a visual or hearing impairment. On the National Rail website you can find details of who to contact for specialist assistance for different providers, from Arriva Trains in Wales to Virgin Trains on the East Coast. You can book assistance at the stations where you’ll be travelling directly with the provider – in most cases, it’s best to give 24 hours’ notice. Get the details online at www.nationalrail.co.uk. You can apply for discounted rail travel too in the form of a Disabled Person’s Railcard. This £20 card gives you and a carer a third off rail travel across the country – so it’s a really good investment. Find out more at www. disabledpersons-railcard.co.uk.
New legislation came into play earlier this year stating that taxi drivers with wheelchair accessible vehicles who refuse to pick up wheelchair-using passengers can face a fine of up to £1,000 – so you may have more rights as a taxi user now. Transport giants Uber, who have an app-based taxi service in most major British cities, are trialling a new service in some locations called UberWAV where you can request a wheelchair accessible vehicle. They also have training available for their partner-drivers in how best to assist passengers with disabilities – so understanding is going to be there. Find out more at accessibility.uber.com. Contact local providers too to ask about accessible cars in their fleet and for information on how to book.
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Here’s a look at some of the organisations who can offer advice and support when it comes to living independently GENERAL INFORMATION Disabled Living Foundaiton www.dlf.org.uk 020 7289 6111 The Disabled Living Foundation offer advice, information and training on all things independent living. Citizens Advice www.citizensadvice.org.uk Citizens Advice have offices across the country and a telephone-based advice service, as well as a website packed with information. Their advisers can help with anything from benefits information to housing. Independent Age www.independentage.org 0800 319 6789 This charity is all about helping older people remain independent, and to live life on their own terms. MOTORING AND MOBILITY Motability www.motability.co.uk 0300 456 4566 Motability is the UK’s affordable car leasing scheme for people with disabilities. You can find out more about it on page 38. Driving Mobility www.drivingmobility.org.uk Driving Mobility is a network of 16 independent organisations which offer information, advice and assessment for people who need to gain or retain independence through mobility. HOUSING Shelter www.shelter.org.uk 0808 800 4444 Shelter is a UK-wide charity supporting those struggling with bad housing
or homelessness. They have lots of information available on their website, detailing your rights and outlining your options. Accessible Property Register www.accessible-property.org.uk The Accessible Property Register showcases accessible properties for sale and to let, as well as holiday accommodation. CARE AND SUPPORT Care Choices www.carechoices.co.uk Care Choices is an online source of information and advice based around arranging care and support services. United Kingdom Homecare Association www.ukhca.co.uk 020 8661 8188 On the UKHCA site, you can search for support in your area, from nurses’ agencies to companies that can help with your housework.
FINANCE Money Advice Service www.moneyadviceservice.org.uk 0800 138 7777 Take control of your finances with advice from the Money Advice Service’s impartial expert advisers.
EMPLOYMENT Jobcentre Plus www.gov.uk/jobsearch You can search for jobs through the Jobcentre portal online, or head to your local branch. Most have a Disability Employment Adviser too, who can point you in the direction of local support organisations, like Remploy and Shaw Trust.
Money Advice Scotland www.moneyadvicescotland.org.uk 0141 572 0237 North of the border, Money Advice Scotland have some great services.
Evenbreak www.evenbreak.co.uk This specialist job board works with a range of big name employers keen to diversify their workforce and work with some of the best talent out there. Check it out for the latest vancancies and job tips.
PRODUCTS AskSARA www.asksara.dlf.org.uk DLF’s AskSARA site is packed with information on different products on the market. Rica www.rica.org.uk The Rica website has lots of consumer guides covering a range of products, all based on research with older and disabled people.
The journey to
DIAGNOSIS Life can be very challenging when your child has a disability – but what if their path to diagnosis is less than moot e ea to t o amilie o aited year to ﬁnd out eciﬁc detail o t eir c ildren condition
CLARE, PIPPA & ALIX CLARE MILLINGTON, from the Lake District, is mum to 17-year-old genetically identical twins Pippa and Alix. They were diagnosed with genetic disorder DDX3X in September 2015. I was made redundant as a teacher about a year ago, so I’m trying to get the twins through transition now from childhood services to adult services – it’s practically a full-time job in itself. The girls are genetically identical twins, but they are quite different in themselves. They both have a condition called DDX3X. That’s a relatively newlyrecognised condition, and it means they’ve got severe learning difficulties, vision impairment and sensory processing problems, and motor skills problems. Generally, they’re incredibly happy, loving, great kids – first and foremost. They got their genetic diagnosis in September 2015, about a month or so after the condition had first been written about. Obviously, we realised there were problems as they arose – from birth for Alix. The list of problems gradually expanded. The genetic diagnosis just made it all make sense, and it was helpful to understand physically what had caused the difficulties they face. In some ways, the diagnosis is just a name. But it’s just nice to know where you are. There are some older girls with the condition, that have been diagnosed. We don’t have that many ahead of them
to give us any clues as to how it might progress. You don’t feel quite as alone though. It also gives some clarity when filling in forms. We get direct payments, so we’ve had some wonderful helpers. One of the most useful things I could have had throughout the twins’ lives so far would have been a secretary to deal with the continual paperwork and appointments. I love
being with my kids. But you’re almost having to use your direct payments so someone can look after your children while you do the paperwork. One of the biggest things I’ve learned from the girls is patience. And just to appreciate different things in life. Those things are brilliant, in a way. They’re great fun. They can see the fun in everything.
MARIAN & JOSEPH
UNDIAGNOSED CHILDREN’S DAY
MARIAN TIPLER lives in Brighton with her partner Neil and son Joseph, who is now 18. Last year, Joseph was diagnosed with a rare genetic disorder called Temple-Baraitser Syndrome, caused by a ‘misspelling’ on the gene KCNH1. Joseph is officially the best boy in the world – that’s what we tell him. He’s 18 now, and goes to a special needs college in Brighton. He was undiagnosed until last summer. He is autistic. He’s got limited mobility. He can walk, but he can’t walk very far. He tires quite quickly. He has sensory processing difficulties, so he finds noisy or busy places very unsettling. He has a very sweet nature, and on the whole, he’s very healthy. I’d sort of got used to thinking that we wouldn’t get a diagnosis for Joseph. And in a lot of ways, I didn’t mind too much. It doesn’t make a difference to your child, but on the other hand, if you’re going to be told that your child isn’t going to live beyond 25, I’d rather not know. Our lives are completely different to how they would have been. I set up Extratime with another mum – we opened in 2003, and we run after school clubs and holiday play schemes that are fully inclusive. We opened it so that our children could go to the club, because they couldn’t go to mainstream clubs. We’ve met amazing people who we wouldn’t have met before. I think, through Joseph, I’ve learned to live in the moment and look at the small things and see how special they are. Joseph is non-verbal. He doesn’t sign. But he loves going out. He worked out all by himself that if he gives us his shoe, that means he wants to go outside. Then he learned it didn’t have to be his shoe – it could be somebody else’s shoe, or a coat, or a bag. And that, for us, was such an amazing thing.
Did you know that approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is likely to remain undiagnosed? Without a diagnosis, families have no idea what the future will hold. Life for the families of these children is extremely isolating and they often feel like they are the only ones in this situation. SWAN UK’s Big Ambition is that these families will have the support they need, when they need it, regardless of whether they have a diagnosis or not. However, many of the families who could benefit from SWAN UK’s support still don’t know the network exists. That’s why SWAN UK is on a mission to find all the families who need support, and to double their membership in 2017. This Undiagnosed Children’s Day on Friday 28 April, you can help SWAN UK meet this target. So what can you do?
Get involved online
There will be lots of activity on social media including Twitter Takeovers on the 28th, and an Instagram challenge in April. Get following and sharing to spread the word: facebook.com/SWANchildrenUK twitter.com/SWAN_UK instagram.com/swanchildrenuk And don’t forget to check out YouTube too: youtube.com/user/SWANchildrenUK
ABOUT SWAN UK
SWAN UK (syndromes without a name) is the only dedicated support network in the UK for families of children and young adults with undiagnosed genetic conditions, run by the charity Genetic Alliance UK. Joining is free for any family in the UK with a child (0-25) affected by an undiagnosed genetic condition. To join, head to undiagnosed.org.uk/join, email email@example.com or call 020 7831 0883.
Pass on information by requesting leaflets and registration forms to hand out Head to the SWAN UK website at www.undiagnosed.org.uk and get as much information as you can to share in your local community, from parenting groups to local cafes – spread the word far and wide!
To support SWAN UK’s work and to help families across the nation, donating couldn’t be easier. You can text SWAN11 £3 (or any amount up to £10) to 70070, or go online to undiagnosed.org.uk/donate to see the other ways you can donate.
Supporting recovery through
OUTDOOR ADVENTURE Last year, the Calvert Trust’s Lake District centre in Keswick launched a pioneering programme that combined occupational therapy with outdoor activities to produce a rehabilitation programme for clients with acquired brain injuries. e ﬁnd out more a out it ucce o ar
THERE IS LOTS OF evidence to show that getting outdoors is good for you – for your mental health, emotional wellbeing and the physical side too. The Calvert Trust has been embracing this for years with their three centres in England, providing fully accessible outdoor adventure activities for people with a range of different disabilities. But last year, the charity’s Lake District base decided to take this a step further – and the results so far have been fantastic. They teamed up with a rehabilitation and case management company from Cumbria to integrate occupational therapy into a week-long course at the centre. “We know anecdotally there’s a huge therapeutic benefit to residential trips – self confidence, outdoor activity, getting people to become active again,” explains Justin Farnan, business manager at Calvert Trust’s Lake District branch. “We did a bit more investigation, and we decided that we were going to launch a hybrid between outdoor activities and occupational therapy. We partnered up with a local organisation called Chance for Life, who are a case management company who, as part of their remit, deliver occupational therapy as part of their clients’ and other people’s clients’ recuperation. This is very specific about brain injury – either acquired brain
injury through accident or medical complications, or stroke.” GOALS Together, the organisations came up with a five-day residential programme which would give people with acquired brain injuries the chance to try a range of outdoor activities, build on their skills and work towards set individual goals too. Before the programme, an OT from Chance for Life will contact each client and talk either with them, a carer or family member or their case manager to discuss their abilities, limitations and what they’d like to get out of the experience. “That helps establish some goals and some priorities for the week,” explains Chance for Life OT Nicola Simpson. “Throughout the week, we work jointly with one instructor from the Calvert Trust and we are very much the team for the week, along with the client’s support workers who come with them.” The group arrive on the Monday and, after settling in and getting to know one another, each day follows a similar structure. They’ll get up in the morning, have breakfast together, then participate in an outdoor activity. This might be sailing, horse riding, cycling, rock climbing, abseiling – and everything is adaptable and accessible.
PICS: © CALVERT TRUST; JONATHAN MARCHANT
SKILLS After returning to the centre, the group will have a long lunch, where they’ll talk about what’s to follow in the afternoon. The afternoon group occupational therapy session, based in the centre, will be focused on a specific skill or challenge, such as memory, attention, meditation or even creative writing. Last year, Calvert Trust and Chance for Life ran three courses at the Lake District centre, and for 2017, they have five dates lined up so far. During the programme, the OT will monitor each participant’s progress and, at the end, they’ll get a report to take either to their case manager or hospital team at home so that it can be used for reference or as part of their continuing rehabilitation. Calvert Trust can currently part-fund participants, but they’re looking at ways of securing funding to make the courses accessible to everyone. “We subsidise it to the tune of about 30%,” Justin says. “That’s just underwriting the costs of running the centre. If somebody has had an insurance payout from a road accident, this is potentially part of their package. But if somebody has had a stroke, they’re not going to have any of that support.” “Going forward, we’re looking to do more researching into occupational
therapy and outdoor education,” adds Sarah Fisher, head of clinical services at Chance for Life. “A lot of OTs working in the outdoors know it works but they don’t know why. Being able to put the evidence behind that means that we’ll have much more chance of funding and we can grow that as an area of OT expertise as well.” RESULTS The outdoor activities lend themselves well to occupational therapy, letting OTs work on physical skills as well as developing confidence, self esteem and teamwork skills, all of which can help in the clients’ day-to-day lives back home and aid their rehabilitation. “If you’re looking at the outcomes that OTs are looking to get with brain injured patients and the outcomes of outdoor personal development training programmes, you’re looking at very similar skill development,” explains Sarah. “By combining the two, you get a very powerful programme. It’s that opportunity to do something and stretch people in ways they didn’t think they possibly could.” And the results so far have been impressive. From participants forming firm friendships and even holidaying together to complete changes in attitude,
it’s been great for the whole team to see a genuine difference in the people they’re working with after just five days. “One woman had been on a Calvert Trust course before,” says Nicola. “But she said the biggest thing she got out of the week was, when she went back to work, they said to her, ‘You’ve been to the Calvert Trust,’ and she said, ‘Yes, but this time it was different. It was for a course for people with acquired brain injury.’ And she said to me, ‘I’ve never been able to say out loud that I have a brain injury.’” “It genuinely makes people shift how they view their rehabilitation,” Justin adds. “On one of the courses, we had a lady who actually had a brain injury as a result of a climbing accident. She was very hesitant about coming and said she didn’t want to do anything to do with rock climbing or abseiling. We said that was fine, but when it came to the final full day, it was rock climbing and abseiling. She just cracked on and did it.”
FIND OUT MORE
Calvert Trust Lake District www.calvert-trust.org.uk/lake-district 01768 772 255
The future of
BRAIN INJURY REHABILITATION The Children’s Trust is a nationwide charity, supporting children with acquired brain injury. We found out more about what’s going on behind the scenes to improve their services and to ensure that every child they work with gets the best support possible EVERY YEAR, ALMOST 350,000 people are admitted to hospital with an acquired brain injury (ABI). From strokes to traumatic road accidents, brain tumours to infections, ABI can take a variety of different forms – and the impact can be wide ranging too. But when children are affected, it can be even more complex. Depending on what age the child is, and the stage they’re at in their development, a brain injury can have a huge impact on a child’s physical, cognitive and even emotional ability. Which is why The Children’s Trust exists. The charity, based in Tadworth, Surrey, offers residential and community-based rehabilitation services for children with a brain injury. After launching the country’s first paediatric brain injury rehabilitation service in 1985, the charity now works with children and families across the UK, offering a vast array of services to help those affected on the road to recovery.
THE FOREFRONT And it’s important for the organisation to be at the forefront of brain injury rehab and support, to give the children and young people they work with the best possible chance. Dr Lorna Wales is a researcher with the charity, undertaking research into acquired brain injury in children and young people. “We partner with the rehabilitation team to help them to understand about using research and accessing evidence” Dr Wales explains. “As a specialist centre, we have to be up to date with all of our interventions and our practices.” Dr Wales and the team look into current practices in The Trust’s rehabilitation services, conduct research with service users, and investigate rehabilitation and support services for children with a range of different disabilities. From treatments and interventions for children with other neurodisabilities such as cerebral palsy, they’re working with clinicians to see if
there’s any crossover in therapies such as constraint-induced movement therapy that could benefit their service users. EMOTIONAL IMPACT And it’s not just about physical recovery for these young people. The charity offers emotional support too, and does the best they can to make sure the children are fully informed and understand their situation. “We did a nice piece of work with the children about what information they needed after a brain injury,” Dr Wales says. “We all assumed they might want an app, but they actually said, no, we’d like a book, or a person to sit with us to explain brain injury. “The children’s emotional needs are just as important post-injury. A lot changes, and children often consider who they were before and after their brain injury. Their dreams and aspirations, and those of their family, have to change – and it’s often very difficult to come to terms with. And understanding child development within rehabilitation is an important part of that acceptance process.” Brain injury rehabilitation can make a vital and life changing difference not only to the child who sustained the injury, but also to the family. The team teach them to care for their child’s recently acquired additional needs, as well as rehabilitation techniques that they can continue at home to help their child continue to progress. i
FIND OUT MORE
To find out more about The Children’s Trust’s work, or to make a donation to support the thousands of children and families they work with each year, head to www.thechildrenstrust.org.uk
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MACK THE KNIFE Enable columnist Tim has ventured into a brave new world – of dog ownership. He shares how he’s getting on with his new furry friend AFTER MUCH CAREFUL CONSIDERATION, we recently decided to add a new member to our family. This is never an easy choice, especially as being a wheelchair user can make caring for another life even more challenging. It’s a pretty big responsibility to handle when day-today activities already have the potential to become complicated. I can deal with the food preparation side of things, and having two kids already means that I am used to negotiating toys and comfort blankets while trying to avoid little toes getting caught under my wheels, but carrying a bag of fresh poo around on my lap is less than appealing. It’s a dog. I’m talking about having a dog. You didn’t think...? Oh, never mind. NEW ADDITION So we have a dog. My first time as a dog owner, (I have always been a cat person) and I’m adjusting pretty well, I think. Our dog is called Mack, he is part Australian cattle dog, part kelpie and part something else, and he is a rescue dog. Getting a rescue dog was an important decision. This is largely because there are lots that desperately need a loving home, and because I have a few issues with the ethics of much of the puppy trade. There is another advantage in getting a rescue dog, as we were able to present the charity with a shopping list
of requirements, something that is pretty much impossible with a puppy. We needed a dog that was good with kids (and chickens), and had no issues with wheels (a lively bicycle chaser was out, obviously). Adjusting to dog ownership has been an interesting process. I have spent the last 12 years railing against dogs and their owners that leave poo everywhere, a particularly unpleasant business (if you’ll pardon the pun) for wheelchair users. Nothing like getting home to discover your hands (and thus the rest of your house) smells of dog poop. HELPERS But I have also met many disabled people who rely on their dogs, whether it’s for companionship, practical help or for life and death situations. Assistance dogs can open doors and even retrieve items from cupboards on command. I know blind people who have guide dogs and one friend whose dog stays with her to offer i
I have spent the last 12 years railing against dogs and their owners that leave poo everywhere support and assistance after she has had an epileptic seizure. In truth, I’m not going to hold my breath until our dog gets stuff down from the attic or changes a light bulb, but we are working things out together, Mack and me. He’s got over his initial wariness, and is learning to walk alongside the wheelchair without pulling me out of my seat. The kids love him, and are delighted to have a dog. I must confess that I’m enjoying it too. It’s just that, having no sensation in my feet, I’m wary of waking one morning to find that he’s eaten a few of my toes while I’ve been asleep...
Looking Up by Tim Rushby-Smith is published by Virgin Books
10 YEARS of the Motability Scheme’s One Big Day events o ﬁnd out at in tore at e ig vent in ay t i year e caug t u it organi er li on ea ley rom ota ility eration td
Congratulations on turning ten! What can people expect from The Big Event in 2017? It’s fantastic that our One Big Day events continue to attract so many visitors a decade after they began – and it’s really due to the fact that we offer something different. Our flagship show, The Big Event in Manchester is the ideal opportunity for disabled motorists to find out everything they could ever need to know about the Motability Scheme – all in one place. Visitors can find out which vehicles are available through the Scheme and take a test drive with our professional instructors to discover the ideal mobility solution for their needs. No need to book, just come along with your driving licence and you’re good to go. What makes The Big Event such a great day out? Visitors can find out which vehicle
best suits them, while enjoying a fun day out with family and friends. They can explore the UK’s largest display of vehicles available through the Motability Scheme, plus meet partners such as the RAC and Kwik Fit. Our planning focuses as much on the ‘fun’ as the ‘functional’. So there’s face painting, balloon modelling and magicians to keep youngsters entertained, plus the chance to meet our much-loved mascot Billy the Bear. There’s lots of free parking, which takes the stress out of travel, and visitors are welcomed with a choice of a free hot or cold drink when they get there. i
The Big Event will take place on Friday 5 and Saturday 6 May at Manchester’s EventCity. To find out more about this year’s event, visit motability.co.uk/thebigevent.
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MINI COUNTRYMAN The second generation MINI Countryman is a larger and much more rounded machine than the one it replaces. With Audi, BMW and Mercedes in its sights, the Brit crossover has plenty of appeal. But how does it measure up on the road? Alisdair Suttie found out
INSIDE Bigger is definitely better when it comes to sitting inside the new MINI Countryman. Longer overall by 20cm than its predecessor, a whole 5cm of this has been devoted to rear legroom, which makes the back seats a much more spacious and accommodating place for adults. Only two grown-ups will fit back there due to limited shoulder space, but three kids should squeeze in. There’s also a larger boot, which is now up to 450 litres. It’s not the longest load bay in the world but the upright styling of the MINI means fitting a folded wheelchair in there should be simple. You can also slide the 40-20-40 split rear bench back and forth to vary load and occupant space. Head to the front of the Countryman’s cabin and you find a driver’s seat with height adjustment and the base cushion at the right height to slip in and out of the car easily. The driving position is good and all-round vision is among the better in this compact crossover sector, though the thick rear pillar can make reversing tricky. As for the dash, it’s very similar to what we’ve become used to from the latest MINI models with the large central dial and a pod behind the steering wheel for speed, revs and fuel.
EQUIPMENT MINI has moved away from its sparse basic equipment offering, and the Countryman now comes with alloy wheels on all models. Each version also has cruise control, rear parking sensors and Bluetooth connection. There’s some form of satellite navigation for all versions, but we’d recommend upgrading to the 8.8-inch infotainment screen for clearer images and simple navigation. Most buyers will also want to tick the box for the Chili Pack that comes with keyless entry, climate control, multi-function steering wheel and LED headlights.
MOTABILITY CUSTOMERS DRIVING A defining feature of any MINI model is the way it drives, and this Countryman is no exception. It enjoys an agility that few rivals can match for the way it changes direction and steers with faithful precision round corners. It also has bags of grip to make sure there’s plenty in reserve if you have to change tack in a hurry. However, this does come at the expense of ride comfort and, while it’s impressive that MINI has made a tall-sided crossover that resists body lean so well, it does pick up on every dip and rip in the road’s surface. Stick with the smaller wheels in FIND YOUR place of the larger optional ones and IDEAL CAR it’s just about bearable. Rica, a consumer research As for the engines, there’s the charity working with older usual Cooper, Cooper S and Cooper and disabled people, has a unique online car search D and SD models, as well as the with key measurements Cooper S E with an 88bhp 1.5-litre and factsheets. Check it out petrol engine and electric motor. It’s online at www.rica.org.uk/ as brisk as the petrol-powered S, yet content/car-search. comes with all-wheel drive as standard so could be a good bet for those in town and country.
The MINI Countryman is available on the Motability Scheme, from £999 Advance Payment, plus your total weekly allowance. For more information, head to www.motability.co.uk or call 0300 456 4566.
SUMMARY If you can live with the firm ride, there’s no doubt the new MINI Countryman is one of the best looking and most fun to drive in the small crossover market.
PRODUCT ROUNDUP Some of the best independent living aids and products worth checking out
ARDOO 140 HOIST
A new range of easy fastening shirts hailed in America as a big breakthrough has now been brought to the UK by Spring Chicken. The magnetic fastenings, hidden behind decorative buttons, have been selected to be just the right strength for firm closure and easy opening. These shirts are perfect for smarter occasions for men and women. • Get it: Spring Chicken, £49.99 (www.springchicken.co.uk, 0800 980 3961)
The Ardoo 140 hoist is the lightest, most compact, folding portable disability hoist on the market. It’s erects and folds in seconds – no tools needed. Ideal for car transfers, it fits in the boot of your car and can even be brought on a plane. A simple hook on plate with knee pad converts the hoist to a standing aid for immediate use. Your perfect travel companion. • Get it: Ardoo Hoists, POA (www.ardoohoists.com)
SPLASHY The Splashy is a portable bath seat, making bathtime fun for kids with disabilities – and a lot easier for adults! This portable, lightweight seat is great for bathing, play and can be taken on holiday or for sleepovers. It doesn’t take up much space either, and it’s easy to lift and move – so your bathroom isn’t taken over by bulky equipment. • Get it: Firefly, £295 exc VAT (www.fireflyfriends.com/splashy)
MORE INFO Get up to speed with your rights as a consumer on the Rica website, www.rica. org.uk
TAP2TAG MEDICAL ALERT BAND This scannable wristband stores medical information that can be accessed by first responders in an emergency. Using a mobile phone, a passer-by or medic can find out important information (that you have chosen to disclose) including allergies, medications, known conditions and emergency contacts. It can also send a text to your next of kin when scanned. • Get it: Argos, £19.99 (www.argos.co.uk)
EASYS ADVANTAGE BUGGY The EASyS Advantage buggy doesn’t just look great, it’s practical too. Features include a sporty-looking footrest, increased storage space, a variety of colour options, and the ability for your child to lie flat at 180°. • Get it: Tendercare, POA (www.tendercareltd.com, 01903 726 161)
THE DIARY 16 MARCH
KIDZ TO ADULTZ MIDDLE Ricoh Arena, Coventry www.kidzexhibitions.co.uk One of the largest, free UK exhibitions, Kidz to Adultz is dedicated to children and young adults aged up to 25 with disabilities and additional support needs, their families, carers and the professionals who support them. Over 120 exhibitors will be in attendance in Coventry, offering advice and information on everything from education and sports to sensory and funding. Check out the free seminars for parents and professionals too. Register for your free tickets using the details above. 15-16 MARCH
Dorfman Theatre, London www.nationaltheatre.org.uk It is not often we see a cast made up of actors in their 70s and 80s, and it’s even less often that we see actors take to the stage without a script. Lost Without Words is a completely unique show that challenges a cast of older actors to perform without guidance and shares moving tales of age, life and love. Best of all, every night is a different show. Both the 15th and 16th offer audio described performances, and if you’d like to get familiar with the surroundings, you can also join the actors for a touch tour on the 16th before the evening show. 24-25 MARCH
TWELFTH NIGHT Olivier Theatre, London www.nationaltheatre.org.uk British actress Tamsin Greig turns Malvolio into Malvolia in a genderbending version of Shakespeare’s finest comedy. Get your tickets for the audio described performances on the 24th and 25th with the added option of a touch tour on the 25th. 28-30 MARCH
NAIDEX NATIONAL National Exhibition Centre (NEC), Birmingham www.naidex.co.uk As one of the largest disability, homecare and rehabilitation exhibitions of the year, this three-day event is a must-visit. With over 250 exhibitors showcasing the
PIC: © NAIDEX
LOST WITHOUT WORDS
latest products, information and services to promote independent living, along with a packed seminar programme for professionals and members of the public, this year’s Naidex is sure to be a hit.
skiing and snowboarding taster day for children and young people. Participants will get a one-to-one session with a qualified coach – there are 32 places available on a first come, first served basis.
THE CARE ROADSHOW Hampden Park Stadium, Glasgow www.careroadshows.co.uk The Care Roadshow comes to Glasgow in March, giving you the chance to chat to suppliers, industry experts and like-minded care professionals, and to discover innovative products and services. Best of all – it’s free, so there’s no excuse not to come along and join in. 29 APRIL
SNOWSPORTS DAY: MILTON KEYNES
EMAIL US Snozone, Milton If you have any events Keynes coming up in May or www.britishblind June, email us at sport.org.uk firstname.lastname@example.org British Blind Sport with the details for have teamed up with inclusion in next issue’s Snozone and Visually diary. Impaired Children Take Action (VICTA) to host this
Changing career always presents some daunting challenges, but if you’ve previously worked as an unpaid carer, chances are you’ve already picked up all sorts of valuable transferable skills that would be an asset to any workplace. But what does it take to make the leap and go from unpaid carer to employed PA? We found out
FROM CARER TO PA PERSONAL ASSISTANTS, WHETHER WORKING in care facilities or for individual employers, carry out vital work and those with experience of caring for a family member are in a good position to support others with specific needs in a variety of settings. And there couldn’t be a better time to get involved – currently there is a huge demand for paid carers in the UK. “There are lots of jobs available and not enough PAs to fill those roles,” explains Carol Reeves, project manager at Skills for Care, the employer-led workforce development body for adult social care in England. “Whether I’m out talking to employers or support organisations, they are all saying the same thing – they can’t find PAs. They are even recruiting people that they might not necessarily want to recruit but they feel they have to because there is not enough choice or enough people working in the sector.” Carol is keen to encourage people who already have experience in caring to make the switch and consider assisting as a career. “If you have already worked in a caring role, you are in a really good position to become a PA,” says Carol. “You’ve got the skills and the knowledge and you can work in a flexible way – why leave all that behind? It’s putting all those skills you have together and earning a living out of it.” PERSONAL QUALITIES One woman who has already made the change from carer to PA, Alison Page, agrees. “I think it’s key personal
qualities that are critical to being a good PA rather specialist knowledge,” says Alison. “A good PA must be willing to listen and learn from the person they are supporting and respond. Don’t underestimate the skills you have learned naturally through your role as a carer – you know far more than you may give yourself credit for.” Alison first turned to a career as a paid PA after discovering how much she enjoyed looking after her adult son. Before Alison became his carer, her son had been in a residential care home that was failing to meet all his needs. Alison took the decision to bring him home and provide round-the-clock care herself. “It was a very daunting prospect,” she says. “But I quickly realised how much job satisfaction I was getting from seeing the improvements it made to my son’s life. I ended up throwing myself into this new opportunity, and realised how much more enjoyable it was than the career I’d been working on for many years.” It wasn’t long before Alison decided to choose to resign from her day job
“Don’t underestimate the skills you have learned naturally through your role as a carer – you know far more than you may give yourself credit for” Alison Page
and begin to develop her skills as a PA through the free support available from her local authority. “I applied to become a member of the Support with Confidence scheme and there are also lots of training opportunities with Skills for Care,” says Alison. “There are so many resources to read and learn from online too – I find it’s essential to refresh my knowledge and keep up to date.” SUPPORT Excellent support is out there for those considering making the switch. Local authorities are a great first point of contact, so reach out to yours to see what training they can offer. Similarly, Skills for Care have local area teams across the country who can signpost you to relevant tools and the availability of funding for learning and development. And the training doesn’t stop once you’re employed – employers can access grants to cover the cost of training for you through Skills for Care’s individual
employer funding. While a lot of what you do requires flexibility and on the job training, you can always learn more through standard first aid and passenger assistance training. “Training isn’t absolutely needed and people can definitely just go straight into the role, but we would encourage training,” advises Carol. “It can really help to give people confidence to move on from a caring role to a more professional setting.” Once you feel comfortable enough to start applying for jobs you can either look independently or through an agency. Agencies handle things like payment, tax and insurance and offer the benefit of convenience – for example, if you need a day off, the agency will arrange cover for you. However, they will take a cut of your pay, and you may not always be sent to care for the same person. You can find a local agency at www.ukhca.co.uk. Alternatively, you can advertise your own services on
websites such as www.pacarers.com and www.simpleneeds.co.uk. Picking your own employer comes with benefits that include choosing someone that fits your experience and getting to know them. Plus, you can decide between the two of you what working times are best and what jobs they expect you to do. FINER DETAILS Pay can vary, from £7.20 an hour – national minimum wage – to £17 an hour in some areas. Most employers will ask to see your passport – and visa, if relevant – to check you are allowed to work in the UK. Be ready to provide valid documents and a Disclosure and Barring Service (DBS) clearance (a criminal record check) should employers ask. You should also ask for a contract setting out the terms agreed, such as working hours, which can be more than 48 hours a week if you agree to opt out of working time regulations and pay rates. You may also be eligible for statutory
maternity pay, sick pay, paid holidays, a workplace pension and redundancy pay. For example, most of those who work a five-day week must receive 28 days’ paid leave a year, including bank holidays. Since becoming a PA, Alison can’t believe how much her life has transformed. She now works for two people and runs her own business that provides PAs to adults. But she says none of it would have happened if it wasn’t for her son. “He has been a huge inspiration in encouraging me to take on this new challenge and change my career,” she says. “The skills I use now have very much been learned from caring for him. To anyone thinking of becoming a PA, I would say take the plunge. You can make a real difference to someone’s life.”
Skills for Care www.skillsforcare.org.uk
WIN A BREAK AT COTSWOLD CHARM HOLIDAY COTTAGES This issue, we’ve teamed up with Cotswold Charm Holiday Cottages to offer you a relaxing three-night stay in one of their accessible properties WITH SPRINGTIME ON THE horizon, the countryside is about to burst back into life – and fewer areas are prettier at this time of year than the Cotswolds. This issue, you could be enjoying the best of it! Situated in picturesque Chipping Campden, Cotswold Charm Holiday Cottages have a collection of gorgeous countryside escapes, including the accessible George Barn property for guests with access needs. The cottages are perfectly situated for exploring the best of the Cotswolds, with plenty of restaurants, old inns and specialist shops to explore in the village itself. During your stay, you can check out Chipping Campden’s historical attractions, like the Market Hall, built in 1627, the wool church of St James and extravagant 17th century monuments. It’s the ultimate escape from the hustle and bustle of everyday life. And we’re giving away a three-night stay for you to enjoy it all!
FIND OUT MORE
For more information on Cotswold Charm Holiday Cottages, and to book your next break, head to www.cotswoldcharm.com
One lucky Enable reader will win a threenight stay in George Barn, Cotswold Charm’s accessible four-bedroom cottage. With four ensuite rooms, including one accessible ground floor room, it sleeps up to eight people, and has fantastic facilities throughout. This brilliant prize is worth £1,000 during peak season – and the winner can opt to upgrade their stay to a week for just £320.
HOW TO ENTER
To enter, simply send us your name, address, daytime telephone number, email address and where you picked up your copy of Enable to: Cotswold Charm Competition, Enable Magazine, DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG. Alternatively, you can email your details to email@example.com All entries must be received by 28 April 2017.
TERMS AND CONDITIONS: The prize is a three-night stay at Cotswold Charm Holiday Cottages’ George Barn only, subject to availability. Terms and conditions apply. The winner can opt to upgrade their stay to a full week for an additional cost of £320. Transfers, transport, food, drink and entertainment are not included. No pets allowed, excluding service animals. Please discuss particular access needs at the time of booking. One entry per household. Entries from the UK only. The winner will be chosen at random. All entries must be received by 28 April 2017. The publisher’s decision is final.
C-Leg 4 The People’s Choice The world’s safest and most popular microprocessor knee is now available on the NHS. The C-Leg has stood the test of time and changed the lives of countless amputees by helping them to achieve increased mobility and independence. No other microprocessor knee is trusted by as many users worldwide. More than 60,000 fittings have been carried out since 1997, defining it as ‘The People’s Choice’. Ask your Prosthetist about the C-Leg 4 today or visit www.ottobock.co.uk for more information.
Ottobock · 01784 744 900 · www.ottobock.co.uk 070_EN_MA17_ADV.indd 70
PICS: JAMES MITCHELL AND BRITISH TRIATHLON
ON YOUR MARKS, GET SET... With the Paralympics not far behind us and the World Para Athletics Championships looming, accessible sport’s still a hot topic. We chat with Paralympic gold medallist Andy Lewis and his prosthetist Rachel Neilson a out o ro t etic device are c anging t e uture o ﬁtne
AS A TEENAGER, Andy Lewis had a dream. An athletic youngster, who ran crosscountry for his county, Andy left school with the ambition of joining the Parachute Regiment of the British Army. But just as he was about to undergo his entry assessments at Catterick, tragedy struck. Andy was involved in a road accident – hit by a 38-tonne lorry at the age of 16. The accident left him in hospital for more than four months as surgeons battled to save his leg. For a short time they succeeded, but at 22 Andy was faced with yet another blow. In December 2005, doctors advised that a through-the-knee amputation was his best option. “It’s hard to look back at that time and think about how it all felt,” he admits now. “I thought it was all over for me.” Ultimately, it was sport that saved him. He was spotted running by the Arctic One Foundation, who then gave Andy the opportunity to learn the basics of triathlon. “Sport gave me focus,” says Andy. “The sense of achievement it brings me is like nothing else.” MAKING HISTORY In 2016, 18 years after his accident, Andy earned his greatest achievement yet. Crossing the finish line in the men’s PT2 at the Rio Paralympics, Andy made history when he won gold in the first triathlon event
to appear at the Games. After the roar of the crowds died down, he snuck back to the Ottobock workshop in the Athletes’ Village to show the prosthetists his medal. “I wouldn’t be where I am today without them,” he says. “I owe them a lot.” Rachel Neilson, who works as a prosthetist and academy clinician for Ottobock, was part of the team that assisted Andy at the Rio Games. “It was an absolutely brilliant experience, but it can be a lot of pressure,” says Rachel. “These guys have been training for years and years so you’ve got to do your bit so they can be the best at their job.” For Andy, that meant a prosthesis that he could use while cycling, a blade for running and an assistant to help him transition in and out of the water. “In swimming, most people don’t use anything because it just gets in the way,” Rachel explains. “And for cycling, Andy actually used the same prosthetic he uses every day because it’s very free and gives him a really big range of motion. Then he has a running blade that is specifically designed for the range he uses and allows him to run at a really fast speed. A huge amount of effort goes into finding the right equipment. It takes a lot of fine-tuning.” ADAPTATIONS Despite having 13 years of experience, Rachel says she picked up a lot of tips and
tricks from the athletes themselves whilst out in Rio. “Something as simple as wrapping a piece of tape around the running blade can change the stiffness ever so subtly,” says Rachel. “You can always adapt that or add things on to get the response that you want. It can be quite a process – even when you have the right equipment – because everybody’s different.” But it’s these subtle differences – in need and want – that have helped to propel prosthetics forward in recent years. “There have been huge advances in the industry, even in the past five to 10 years, and I think we can expect a lot more,” says Rachel. “I hope that will open the sport up to a lot more people. People don’t just want to walk in a straight line – that’s not what life’s about, is it?” Last year, the government budget revealed that £500,000 will be spent on new children’s sports prosthetics, giving the chance for 500 child amputees to learn to run or swim. Before the financial boost, the NHS was only required to provide limbs to allow adults and children to walk, which meant it did not fund activity prosthetics like running blades. “My advice to parents would be to take advantage of this now,” says Andy. “Because you never know if the opportunity will still be there once the money runs out.” But Rachel emphasises that running
“There have been huge advances in the industry, even in the past five to 10 years. I hope that will open sport up to a lot more people” Rachel Neilson, Ottobock blades are not always necessary for the enjoyment or participation of sport. “You shouldn’t have to feel like you need something specific to start off with,” says Rachel. “You can learn to run on an everyday prosthetic – it’s not the same as a running blade but you can do it.”
PIC: WELOVEPORTRAITS; GETTY IMAGES
GIVE IT A GO Rachel advises building on muscle strength and working on balance before progressing to anything more advanced, and looking at sports and activities that don’t require prosthetics. “There are loads of options out there depending on what your ability is and what you fancy,” she explains. “There are plenty of things you can do without prosthetics as well. Sitting volleyball and wheelchair basketball are both great and there are loads of clubs up and down the country. Plus it’s available to able-bodied people as well, so you could take along a friend and have a go.” For those who are keen to access sport using a prosthetic, options i
and opportunities are only growing. “We really are starting to see big developments, not just with running blades, but in other sports too,” says Rachel. “We’re designing more and more for snowsports – so for skiing and snowboarding, and you can also use it for similar movements like waterskiing and wakeboarding. In all those sports you’ve got bent knees and ankles bent a little, and you have a bit of a bounce. Very different to walking, so they’ve been made to fulfil that one particular role.” First in line for the new snowsport prostheses will be Andy. “I’m always interested in trying out other sports,” he says. “Snowboarding is top of my list but I’m always open to new things – it’s all about finding what you love and getting involved. “Don’t get me wrong,” he adds. “I know that not everyone is going to be a Paralympian. But everyone deserves a chance to try something and find what they like.”
Find out more about Ottobock’s range of cutting-edge prosthetics at www.ottobock.co.uk
â€œMy team embrace that I see the world differently.â€?
Rachel - Modern Apprentice VisitScotland, Tourism Autistic
Help your child get a head start in their career with a Modern Apprenticeship. Find out more at apprenticeships.scot 074_EN_MA17_ADV.indd 74
Employment and Education
BIG Whether you’re starting out in your career or loo ing or a c ange e ﬁnd out a out t e eneﬁt o a lying or large organi ation
CONFIDENCE CAN BE A HUGE issue for disabled people looking for work. Often, they’ll see their disability as a hindrance, they’ll think employers will automatically disregard them because of their impairment and they worry about not getting access to the right type of support that’ll help them to do their job. Most of these fears are unfounded – and there’s legislation in place to make sure that employers don’t discriminate against you because of your disability. If you’re looking for work, and your confidence is holding you back, it’s worth investigating what big companies have to offer. While some fear that they’ll get lost in a big corporation, or that larger employers won’t have time for them, many workers find that big businesses are in fact incredibly supportive – with lots to offer staff with disabilities.
MAKING ADJUSTMENTS The biggest fear many have is that of access and adaptations – will this employer be able to meet my needs? Under the Equality Act 2010, all employers have a duty to provide reasonable adjustments – that could mean screen reader technology, interpreters, suitable seating, or physical adjustments to the workplace. This can seem like a lot to ask, but with the law on your side, and the Access to Work fund, a government fund which pays for such adjustments, there’s no reason for them
Large employers are more likely to be part of disability support networks
to say no. Larger companies often have a fast-track adjustment process too where, rather than waiting for medical evidence or assessments, they’ll work with employees directly to find solutions and get things done more quickly. Big companies are more likely to have more than one disabled member of staff – and, as a result, they’ve got a better understanding of disability and how best to support disabled people in the workplace. Some even have special networks for disabled staff members. EDF Energy, for instance, which employs over 13,000 people, has a disability and carers network. It’s great both for staff morale and the company’s understanding of the support that disabled people and those with caring responsibilities need.
Employment and Education
ACCREDITATION There’s lots of help out there for companies who employ or who are looking to employ disabled people, ensuring that their business is as inclusive as possible. The Business Disability Forum, for instance, is a great platform for companies to get support and direction when it comes to employing disabled people, making for an overall more inclusive business. BDF operates under the Disability Standard, a set of 10 areas in which businesses can measure and improve their progress to becoming truly disability-smart. The Disability Confident campaign is another accreditation scheme, this time run by the government. It encourages companies to recruit and retain disabled people and people with health conditions within their workforce. Better still, large employers are statistically more likely to get involved in these support schemes and membership organisations. If you look through the companies signing up, you’ll see big names like Barclays, BT, Lloyds TSB, the House of Commons and many more large organisations across the private, public and third sectors. And if you go for a job and find they aren’t involved? Speak with the HR department and let them know
they should be. Getting accreditation or signing up as a member is good business sense – it helps them become more inclusive, a better employer and enables them to work with the best talent out there. MOVING ON UP With big companies, there’s also more scope for progression. Large businesses are more likely to offer apprenticeships and graduate training schemes, so you’ll get formal training and maybe even work towards qualifications that will help you in your job, and put you in a good position for the future. There’s also more chance of promotion, or even switching to other departments – internal candidates always have a better chance. And with more roles, departments and expansion, if you do get tired of your current position, you don’t have to go through the upheaval of looking for a new job and starting over somewhere new. When it comes to the world of work, it definitely pays to think big – so put those fears aside and start applying now.
Check out these organisations for vacancies and information on disability-smart companies. Business Disability Forum www.businessdisabilityforum.org.uk Evenbreak www.evenbreak.co.uk Purple www.wearepurple.co.uk
ON THE JOB: JANE FORSTER, BARCLAYS AS WELL AS BEING one of the UK’s largest employers, Barclays is one of the most inclusive. As one of only four companies to have achieved Gold status in the Business Disability Forum’s Disability Standard, the bank is going the extra mile to ensure that disabled staff are listened to and supported. Jane Forster, 23, joined the company in 2013 as an apprentice cashier. After completing her apprenticeship in a year, and gaining an NVQ Level 2 in financial services, Jane now works as a community banking moment banker in a branch in Newcastle. “I help customers with their day-today banking needs,” Jane explains. “I open bank accounts, do loan applications, credit cards and insurance. I love working in a customer facing role – and Barclays are a really good
company to work for.” Jane, who has a visual impairment, applied for the apprenticeship because she recognised the benefits of being part of a large organisation. “It’s a reputable company and it appealed to me to work for a big company if I needed adjustments,” she says. “I haven’t needed a lot of support to be honest – but I’ve always known that if I need any support, if I asked, it would be there, and it would be there quickly.” One of the real bonuses for Jane is how much scope there is for progression. In the future, she’s keen to move out of working in the branch and get into a behind-the-scenes role supporting other staff. “From working alongside other departments, I would really welcome a
future career move and progression into the accessibility team, or diversity and inclusion,” she says. “I really love what I’m doing now, and I’ve been enjoying this role for a year, but I’m always looking at how I can progress and develop myself further. I definitely want to stay with Barclays and perhaps my next step will be into HR. There are just so many opportunities on offer with Barclays.” To find out more about career opportunities with Barclays, head to jobs.barclays.co.uk.
Apprenticeships can open up doors to hundreds of exciting career opportunities – but where to start? Ahead of National Apprenticeship Week (6-10 March), we take a look at what apprenticeships involve, what they can do for you, and just how accessible they can be
THINKING ABOUT TAKING THE next step on the career ladder? An apprenticeship might be for you. Not only will you start making money right away, you’ll also get the chance to work alongside experienced staff, gain the skills necessary for work, and study towards a qualification. While in the past apprenticeships were limited to trades like engineering and building, that’s no longer the case. From hospitality to admin – these days you can do an apprenticeship in just about any sector that takes your fancy, and it can be far more accessible than you’d think.
Employment and Education ACCESS FIRST As with any job, employers have a responsibility to make reasonable adjustments as outlined in the Equality Act 2010, as do the training providers they are working with. This means almost any apprenticeship can be made accessible thanks to small adjustments like a wheelchair ramp, screen reader technology or getting support in place like a support assistant or interpreter. The Access to Work scheme is there to help your employer pay for any adjustments that need to be made too, and colleges and training providers will be able to get support in place to help with the training side. Best of all, most apprenticeships require no prior knowledge or qualifications, so there’s nothing stopping you from kick-starting your dream career. Although some employers may ask for certain subjects at GCSE or even A-level, with over 80 apprenticeship sectors to choose from, there’s sure to be one that suits you and your skill set. Apprenticeships are open to anyone aged 16 or over, and may be structured differently depending on where you live. The ultimate goal is always to give someone a job that really contributes to the company, to train that person and build up their qualifications and skills. GET QUALIFIED Employers work alongside a training provider, like a local college, to help you get there. In your role as an apprentice, you’ll have certain responsibilities and tasks to complete but you will also receive plenty of support and training from your experienced colleagues. And that’s not all. The big benefit of an apprenticeship is that you can work towards a formal qualification thanks to coursework that relates back to your job. This coursework may be completed on the job, or as day release at a college or training centre. The training provider will let your employer know what tasks they have to do with you at work, and assess you as you go along. Don’t be put off by the idea of more studying – the coursework is designed to help boost your knowledge and develop your skills in your job. Different
Apprenticeships are available in over 80 different sectors, so there’s lots of choice
QUICKFIRE QUESTIONS WHAT KIND OF QUALIFICATIONS CAN YOU GET?
You can work towards an NVQ (National Vocational Qualification) SVQ (Scottish Vocational Qualification), HNC or HND (Higher National Certificate or Diploma), or certificates tailored to your chosen profession.
HOW DOES THE TRAINING SIDE OF THINGS WORK?
Your employer will team you up with a training provider, who’ll decide the best way to progress. Most training is done on the job, but you could go to day release courses, attend college for a block or on a weekly basis, do training online – your training provider and employer can come up with a plan that works best for you.
From hairdressing to healthcare, transport to tech, employers across the UK are recruiting for apprentices year-round. qualifications, levels, and routes of progression are offered – so if you successfully pass the first stage, you can go on to the next level and gain more qualifications and experience. Every apprentice who successfully completes their training will finish their apprenticeship with the appropriate qualification, such as a work-based National Vocational Qualification (NVQ) or Scottish Vocational Qualification (SVQ), a technical qualification like a BTEC or City and Guilds, or collegelevel qualifications such as an HNC or HND. What you get and how you get it depends on which country you live in and also your apprenticeship – different providers offer different qualifications.
EARN WHILE YOU LEARN Apprenticeships are paid too, with the average apprentice in the UK earning £200 a week. The current minimum wage rate for an apprentice is £3.40 per hour. This rate applies to apprentices under 19 and those aged 19 or over who are in their first year. You must be paid at least the minimum wage rate for your age if you’re an apprentice aged 19 or over and have completed your first year. This is just the minimum wage though, and some apprentices earn much more than this. After finishing, the majority of apprentices will remain in employment – with 64% staying with the same employer. Plus, stats show that employers think that qualified apprentices are 15% more employable than those with other qualifications thanks to their knowledge of working alongside industry professionals and having all the skills and contacts necessary to get a head start in their career. So what are you waiting for? Most vacancies are listed on the government’s apprenticeship website (www.findapprenticeship.service. gov.uk) so registering on the site is a good first step. You can also approach companies directly to ask if they have any opportunities. Before you apply, think hard about your abilities and skills and always be upfront with the employer and training provider about your needs and requirements. They’re there to make sure all your needs are met so you can progress and contribute to the best of you abilities. But remember – an employer can’t ask you about your disability until after the job offer has been made, unless they are enquiring about access requirements. Before this point, it’s entirely up to you whether or not you disclose your disability. Apprenticeships are a brilliant starting point to any career. It can help prepare you for even bigger and brighter things, and there couldn’t be a better time to get applying. Check out the organisations below for advice, information and inspiration and get going – it could be the best career decision you ever make. i
Get In, Go Far www.getingofar.gov.uk Modern Apprenticeships (Scotland) www.apprenticeships.scot
Real CareersStart StartHere Here Real Careers Real Careers Start Here These are exciting times at North Mid. We have reached the end of our five year major building and refurbishment programme. We are delighted to say that over 94% of our services are now delivered from new or newly refurbished buildings that are less than six years old. As well as modernising, we have continued to grow. We treat more patients and employ more staff than ever before. Over 3,000 staff now work at the hospital and well over 2,000 patients use our services every day. It has been a period of major transformation and we are delighted with the progress we have achieved.
View our Modern Apprenticeship Opportunities at
www.nhsggc.org.uk/MA View our Modern Apprenticeship Opportunities at View our Modern Apprenticeship Opportunities at
The Trust provides patient services to the population of Enfield and Haringey. The Trust services a diverse local community and employs a diverse workforce. We employ a range of disciplines and fully support and encourage flexible working practices. We are committed to the Two Ticks Disability Criteria and guarantee a positive approach is adopted by the Trust to support employees with a disability enabling them to remain a value member of the team. For further information about our current vacancies please visit our website www.northmid.nhs.uk – “Work With Us”.
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MAINSTREAM V. SEN Ambitious about Autism’s director of policy Elizabeth Archer tackles the topic of choosing the right school for your child DECIDING ON THE RIGHT school to send your child to can be a headache for any parent. Every family will have a preference of school based on a myriad of factors unique to them. For families with a child with SEND, after getting a diagnosis of autism, there is added complexity. Would my child be happier in a mainstream or special school? Where are they going to thrive and make the most progress? A diagnosis of autism can feel like a huge change, so remember a couple of key things: • Your child is still the same person. All that has changed is your understanding of how their mind works. • Your child’s autism doesn’t need ‘fixing’ – it’s a part of their personality. • Your child is unique. What works for another child with the same diagnosis may not work for them. I have seen countless families ask themselves whether a mainstream or a special school will be the right choice for their child. And there is no easy answer.
DECISIONS So how do you decide what would work for your child? Professionals such as educational psychologists will be contributing to your child’s assessment – so talk to them and ask questions. They won’t recommend a particular school, but they can talk about the kind of teaching and environment that could work for your child. Don’t underestimate how well you know your child. Ask yourself these really simple questions: in what kind of environment is my child happiest and calmest? In what kind of environment is my child unhappy? What is my child good at? What are my child’s aspirations and my aspirations for my child? The answers to these questions will give you some clues as to which school your child is most likely to thrive in. It won’t answer the question as to whether mainstream or special is better for you – because the physical and learning environment varies from school to school. It will, however, give you a good starting point with your local authority. For example: “My child is very
bright, but staying in noisy spaces too long can be difficult for them. They will need to access quiet areas regularly.” This can form a good basis for your discussions around schools that could best meet your child’s needs. TEAM WORK Visiting any schools you are considering, and talking to teachers and the SENCO, is a must. You and this school are going to be a team over the coming weeks and years – it’s important that you feel comfortable and listened to. No one knows how your child’s needs will change as they get older. Mainstream works well for some children, while for others a specialist environment is better. The question is not mainstream or special – but rather, which particular school best fits with my child’s unique needs and interests. i
FIND OUT MORE
If you need advice or support from other parents, visit www.ambitiousabout autism.org.uk/talk-about-autism.
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