ISSUE 2 2017 •
D I S A B I L I T Y
www.novadisability.co.uk
I’M COPING
DON’T WORRY ABOUT ME
I’M OK
LIFE IS GOOD
HELP
EVERYTHING’S FINE
I’M GETTING BY
IT’S NO BIG DEAL
I’M ALL RIGHT
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Acquiring a disability can have a huge impact on your mental health – find out more about how to overcome it
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WELCOME
Hello, and welcome to the second issue of NOVA Disability! Last February, our first outing was a roaring success – so this year, we had to come back with more. NOVA is a magazine designed specifically for people who are new to disability. Whether you’ve acquired a disability yourself, or someone close to you has, we’ve covered some of the topics that’ll be of concern to you as you venture into this new chapter in your life.
PUBLISHER
Denise Connelly denise@dcpublishing.co.uk
EDITOR
Lindsay Cochrane lindsay.cochrane@dcpublishing.co.uk
STAFF WRITER
Kirsty McKenzie kirsty.mckenzie@dcpublishing.co.uk
DESIGN AND PRODUCTION Lucy Baillie
lucy.baillie@dcpublishing.co.uk
PRODUCTION ASSISTANT Lisa McCabe
lisa.mccabe@dcpublishing.co.uk
SALES
Because disability can be scary. For many of us, it’s the complete unknown. Navigating the medical world, applying for benefits for the first time, handling all the emotional highs and lows that come with it – and there’s no definitive ‘how to’ guide to help you manage it all. Which is why we’ve tried to tackle the issues which we’ve found many people struggle with when disability enters their life. From managing money to getting on in the workplace, maintaining relationships to having a social life – we’ve gathered together information from the experts to help you assess your options, decide what’s best for you and move forward in your life. Whatever your aims, there will be a way of doing it. It might need adapting or scaling down or adjusting slightly – but it’s still within your reach. It might not happen tomorrow. It might not even happen next year. But you’ll get there. Support is available. And I know that asking for it can be difficult – when I was diagnosed with Crohn’s disease at 18, I totally shut myself off – but, honestly, it’s worth getting. Whether it’s practical or emotional, there’s someone out there who can help you. So, when you’re ready, start doing your research and see what’s out there. Disability isn’t the end of the world. It’s just different. I hope that the information we’ve brought together here is useful for you, and that you make contact with some of the handy organisations we’ve listed. Even though it’s difficult, nothing is impossible. Good luck.
Marian Mathieson marian.mathieson@dcpublishing.co.uk
NOVA DISABILITY
www.novadisability.co.uk Lindsay Cochrane, Editor Brought to you by the team behind
enable Forget can’t - think can!
magazine
DC Publishing Ltd 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007 ©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.
DON’T MISS...
17 THE MOTABILITY SCHEME
Find out about the affordable car leasing scheme giving thousands of disabled people a renewed sense of independence.
25 IT’S GOOD TO TALK
For many, adapting to the physical side of their disability is easy compared to the mental impact – we take a look at support services.
44 THE CAREER SWAP
If your impairment means you can’t return to your old line of work, what are your options? We find out what’s out there.
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CONTENTS
What’s Inside 18
REAL LIFE
6 LIFE AFTER THE FORCES
Former Army Reservist George Pas tells us about his very active recovery.
28 BECOMING A CARER
Mum Dawn talks about adjusting to life as a carer after her two kids were born with severe disabilities.
46 GOING THE EXTRA MILE
Amputee Catherine Rutley-Frayne tells us about her fundraising mission.
13 LIFESTYLE
21 GET ACTIVE
Thought sport was out of the question? Think again! Two women tell us about the positive role keeping active plays in their lives.
30 IN SICKNESS AND IN HEALTH?
Despite the popular wedding vow, couples where one person acquires a disability are more likely to split. So how do you overcome it? Relate relationship counsellor Denise Knowles offers some advice.
33 ACCESSIBLE ADVENTURES
Exploring the world is easier than ever before for people with disabilities. We share some tips for getting that dream break.
34 THAT’S ENTERTAINMENT
Blogger Emma Muldoon offers some insider insight on making the most of entertainment and social options.
39 PRODUCT ROUNDUP
We take a look at some handy gadgets, gizmos and products to help you maintain your independence.
CARE
10 SOCIAL CARE: UNDERSTANDING YOUR OPTIONS
If your disability means you need a bit of help with the day-to-day, it’s worth investigating social care support.
17 THE MOTABILITY SCHEME
We find out about the UK-wide affordable car leasing scheme.
FINANCE
13 MANAGING YOUR MONEY WORRIES
18 THE KEYS TO INDEPENDENCE
Being disabled is expensive – but fortunately, there’s advice and services out there to help you through.
How do you get back on the road after accident, injury or diagnosis? We asked the experts.
SUPPORT
WORK
A roundup of useful organisations, from employment to housing.
When you have a disability, it’s important to understand your rights in the workplace. We’ve got the lowdown.
8 THE SUPPORT NETWORK 25 IT’S GOOD TO TALK
30
MOTORING
Often, the emotional impact of disability is harder to manage than the physical. We find out more about how to conquer feelings of worry, anxiety and depression.
42 BACK TO WORK
44 THE CAREER SWAP
Can’t return to your old job? We’ve got some hints and tips on what to do next, with two people sharing their own career change stories.
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SUPPORT REAL LIFE
Life after the Forces W
When Reservist George Pas was injured in a motorbike accident in 2011, he was determined to keep active – and with a little help, he’s doing just that. The military man tells us about his road to recovery
hen George Pas left school, he knew the path for him – the Territorial Army. Now known as the Army Reserves, he spent 14 years serving, completing deployments in Afghanistan, Ukraine, America and Cyprus. He earned a Lord Lieutenant’s Certificate of Commendation for Meritorious Voluntary Service, and a Colonel in Chief’s commendation. But, in 2011, a motorbike accident resulted in a T3 spinal cord injury, leaving George paralysed from the chest down – all two months before he was due to head out to Afghanistan for his third tour. “I believe that everything happens for a reason,” George says. “The fact that I had a motorcycle accident so close to going back to Afghanistan – maybe I wasn’t supposed to come back from Afghanistan.”
RECOVERY
Following his accident, George threw himself into his recovery. To go from being so active to relying heavily on others was a lot for him to take in – but he was determined to be as independent and active as possible. Which is why he started fundraising to get himself an off-road mobility vehicle, in the form of an Overlander. The specialist wheelchair would mean that George could get back to where he was happiest, going on outdoor adventures in the woods and on the beach with his wife, three kids,
family and friends. “I did a tandem skydive 10 months after I came out of hospital to raise money,” he says. “People were like, ‘What if something goes wrong?’ Hello, I’m paralysed from the chest down. What more could go wrong?” He also completed a fundraising abseil, before approaching a number of Service charities for support. Many stepped in, including ABF The Soldiers’ Charity. And he’s been grateful ever since. “I do fundraising, even collections, to give back. I believe that should happen,” he says. “With The Soldiers’ Charity for instance, I take my Overlander to events, like the Yeovilton Air Day. I try speak to people and they put money in the pot. By being there, they can see where their money is going.”
SUPPORT
He’s also using the web to reach out and offer support to other spinal cord injured people. Along with a friend, he manages a Facebook group called the SCI Owners Club, where people from as far away as Inverness to India stop by, share their experiences and ask questions. They’ve also got the SCI Owners Club, Partners
and Family group to help those closest to those affected by spinal injury. “I think if you keep busy and challenge yourself, it stops you from falling into an ever-increasing downwards spiral that will only end up in depression,” he says. “No matter how bleak you think things are, life’s still life. You’ve just got to find different ways to live it.”
FIND OUT MORE ABF The Soldiers’ Charity offers support to British Army soldiers, veterans and their immediate families, providing grants for individuals and funding to specialist charities both at home and abroad. To find out more about their work, head to www.soldierscharity.org.
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soldierscharity.org
ABF The Soldiers’ Charity, the British Army’s National Charity since 1944. We help thousands of soldiers, former soldiers and their families each year. It is thanks to the continued support of people like you that we are able to be there, year after year, for all those who need us.
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Text ARMY8 to 70004 and send us a £3 donation. Increase your donation by texting ARMY8 £5 or ARMY8 £10.* Thank you for your kind support.
*Text costs your donation amount plus network charge. ABF The Soldiers’ Charity receives 100% of your donation. Obtain bill payer’s permission. Customer care 020 7901 8900
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SUPPORT
THE SUPPORT NETWORK
Check out these useful organisations for help, support and advice in a variety of areas of life
RIGHTS
Disability Rights UK www.disabilityrightsuk.org General enquiries: 020 7250 8181 With a range of fact sheets and advice lines, DRUK help you get a better understanding of what you’re entitled to in terms of welfare support, housing, in the world of work and beyond.
Equality and Human Rights Commission www.equalityhumanrights.com 0808 800 0082 EHRC is an independent commission designed to help protect the human rights of people in Britain. If you feel you’ve been discriminated against in any way, they might be able to help.
FAMILIES
Contact a Family www.cafamily.org.uk 0808 808 3555 Contact a Family is a national charity for families with disabled children, providing advice, information and support to those who need it.
Family Fund www.familyfund.org.uk 01904 550 055 Last year, Family Fund provided over £36m in grants for families raising disabled or seriously ill children, used to pay for items like specialist equipment, short breaks, computers, furniture and more.
HOUSING
Shelter www.shelter.org.uk 0808 800 4444 Shelter is the country’s leading housing charity, offering support and information to those struggling with bad housing or homelessness. They have lots of info for disabled homeowners and tenants online.
Disabled Facilities Grants www.gov.uk/disabled-facilities-grants
Access to Work www.gov.uk/access-to-work
The government funding scheme for housing adaptations, Disabled Facilities Grants are governed by individual local authorities. Contact yours to find out more, or get the lowdown online.
This government fund helps to pay for adaptations in the workplace. Your employer applies for it on your behalf, and can pay for anything from specialist equipment to interpreters. You can find out more on page 42 too.
MOTORING
Motability www.motability.co.uk 0300 456 4566 The Motability Scheme is the UK’s affordable car leasing scheme for disabled people. You can find out more on page 17, or head online now.
Blue Badge Scheme www.gov.uk/apply-blue-badge Blue badges give disabled people who meet certain critera access to prioritised parking spaces and, in some cases, free on-street parking. It’s administered by your local authority, so head online to get the best contact.
INDEPENDENT LIVING
Disabled Living Foundation www.dlf.org.uk 0300 999 0004
DLF’s website is jam-packed with information on the topic of independent living, from handy product guides to supplier lists.
EMPLOYMENT
Business Disability Forum www.businessdisabilityforum.org.uk The Business Disability Forum is a member organisation that helps businesses become more disability-friendly, both for customers and members of staff with disabilities. BDF’s member organisations are all positive about disability – so if you’re looking for recruiters who can support you, browse the member list now.
FINANCE
Entitled To www.entitledto.co.uk The Entitled To website helps you figure out if you’re missing out on any financial support you should be receiving. Just pop in your details and it’ll kick up grants and benefits you might not have heard of.
Money Advice Service www.moneyadviceservice.org.uk 0800 138 7777 The Money Advice Service offer free, impartial advice on all things finance, from mortgages to benefits. Their trained advisers have lots of information to get you clued up.
MENTAL HEALTH
Mind www.mind.org.uk 0300 123 3393
Mind provide support for those experiencing mental health problems, including face-to-face support sessions and helplines. Look out for groups in your local area.
Samaritans www.samaritans.org 116 123 If you’re struggling emotionally, Samaritans offer space to talk, off the record, about what’s on your mind. Whether you’re at breaking point or having a down day, their call handlers are always willing and able to listen.
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SOCIAL CARE UNDERSTANDING YOUR OPTIONS If your disability means that you need some extra help to carry out day-to-day tasks and activities, and you don’t have a member of family or a friend who can help out, it might be worth investigating your options in social care. But what does that involve? NOVA takes a look at some of the different services that are out there
PRODUCTS
Your assessment of need may conclude that while you might not need help from another human being, you could benefit from some products, gadgets and gizmos at home to make things easier and to boost your independence. Everything from grabbers to gripping aids, ergonomic beds to riser-recliner chairs, there’s a wealth of items on the market to help make life easier. The Disabled Living Foundation’s AskSARA site (asksara.dlf.org.uk) is packed with information on different items for use around the home, so have a look at what’s out there. Your local authority may be able to provide
a number of independent living aids at no cost too, so get a needs assessment organised and have a chat with your OT about what could work best before investing in anything yourself.
TELECARE
Telecare services connect your home to an external call centre, so if something goes wrong, someone will be alerted, whether that’s staff at the telecare provider’s centre or a member of your family. It’s a service that works – 1.7 million people rely on telecare to help them stay safe in their own homes. Telecare systems can take a variety of different forms. From pendant alarms
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CARE
CARE FAQS What is social care?
Social care services, or care and support services, are designed to help people who need practical support because of illness, disability or old age. Services can range from having a personal assistant at home to setting up an alarm system. It’s all about helping people with disabilities to live as independently as possible.
Who pays for it?
Local authorities are responsible for providing social care services, but they are means tested. They’ll assess your needs and finances, and may agree to pay for some or all of the support that you need. You may also be eligible for funding from the NHS if, for instance, you require nursing care.
Who provides social care?
Sometimes, support will come from your local authority directly or they may fund services from an independent company or charity who specialise in social care support. You can also pay for care from a private organisation like this yourself.
What’s a personal budget?
Instead of receiving services provided by the council, you may opt to take
that you wear round your neck or wrist to sensors around the home monitoring your activity that family members can check online, there’s a number of options to suit your level of need. You can find out more about the different types of services available on the market at the Telecare Services Association website, www.tsa-voice.org.uk.
PERSONAL ASSISTANTS
Personal assistants, or PAs, are care workers who come into your home to help with everyday activities like washing and dressing, using the toilet, doing laundry, accessing the community and more. A PA’s work is very much based on your needs, so you might get help once a week, a few times a day, or even on a full-time basis. You can access a PA via your local authority, through a private agency or you can become an individual employer and use your care budget to hire your own PA – you can find out more about the ins and outs of hiring a PA yourself through Skills for Care (www.skillsforcare.org.uk).
A total of 1.3 million older and disabled adults in England alone receive social care support HOME ADAPTATIONS
Your local authority might fund adaptations to your home to make it more accessible. Adaptations can include everything from wet rooms to stair lifts, adapted kitchens to widened doorways and ramps – anything to make moving around your home a little easier. Disabled Facilities Grants (www.gov.uk/disabledfacilities-grants) can be applied for to help make these changes.
RESIDENTIAL CARE
It might be that you’re no longer able to stay in your own home because of access, care needs or simply personal preference. If this is the case, you can start investigating residential care, which can take a few different forms depending on your level of need. In a supported
control of your own care, which will see you receive the funding allocated as a Direct Payment. You’ll get to choose how to spend it – within the guidelines of your care plan. You can say who supports you, when and how. A personal health budget might also be available to you from your local NHS trust. An assessment of need is carried out by a representative from your local authority, such as an occupational therapist, to see how you get on with everyday activities like getting out and about, looking after yourself and household tasks. They’ll come up with a care plan, setting out what your needs are and how they can be met with different services. You’ll have the opportunity to be involved in the plan, and say what your priorities are too.
How do you know if the services being provided are any good?
In England, the Care Quality Commission (www.cqc.org.uk) is the independent regulator for all health and social care services, so you’ll be able to check out reports on providers. In Scotland, it’s down to The Care Inspectorate (www.careinspectorate.com), and the Care and Social Services Inspectorate in Wales (www.cssiw.org.uk).
living arrangement, you’ll often live in your own self-contained flat and staff are on hand to help with any specific needs you might have. You’re responsible for your own bills and cost of living, unlike in traditional residential care homes, where food, heating and general support are all included in your package. If your needs are more complex, you may require nursing care, which can also be provided in a residential nursing home setting.
REMEMBER
When it comes to getting help, the most important thing is that you go for something that meets your needs and helps you to maintain as much independence as possible in a way that you feel comfortable, supported and safe. When speaking with providers, always make sure that your needs are at the centre of any plans being made.
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FINANCE
Beating your
Money worries Money is the first thing many people stress about when they acquire a disability. So what support is out there? We caught up with the Money Advice Service to find out
I
t’s not the news you want to hear after a life-changing diagnosis, but having a disability is expensive. According to research carried out by Scope, life costs £550 more each month if you’re disabled. Costly equipment, specialist services, transport – many people are paying over the odds for everyday essentials. And if your disability means you have to be out of work for a while, or can’t return to work at all, it becomes even more difficult. But you don’t need to struggle alone. There’s specialist funding, welfare benefits, grants, discounts and more to help you manage your finances and avoid falling into debt. “Who to turn to when it comes to finances is one of the first questions people have when they acquire a disability,” explains Money Advice Service money expert Nick Hill. “You really do need to seek help because it is so complicated.”
SUPPORT ORGANISATIONS
Independent organisations like the Money Advice Service, Citizens Advice, the Older People’s Advocacy Alliance, Disability Rights UK and charities such as Scope are a good first point of call if you’re in need of financial advice. They’ll be able to explain what your rights are, who you can go to for support and what’s
available in terms of practical support such as welfare benefits. Personal Independent Payment (PIP) is open to those both in and out of work and helps to pay for the extra costs of having a disability, while Employment and Support Allowance (ESA) is for those unable to work because of their disability. You could be eligible for tax credits to boost your income, VAT relief on certain products, a discount on your TV licence, Housing Benefit, Attendance Allowance, help with travel costs with bus or rail cards, or you could qualify for support through the Motability Scheme (see page 17) – in other words, there’s lots out there. You
Life costs £550 more each month if you’re disabled, thanks to costly equipment and specialist services
can check your eligibility at www.entitledto.co.uk, or search for grants at www.turn2us.org.uk. “It can be quite overwhelming, and you’ve got to make sure that you get what you’re entitled to,” Nick points out. “That can either support you getting back to work or staying out of work and maintaining your independence.”
MAKING PAYMENTS
Making payments on your regular bills can be a real worry, but Nick advises speaking to those you owe money to, from mortgage providers to gas and electricity suppliers, to explain your situation rather than taking out expensive payday loans and high interest credit cards to cover costs. You might find they are more sympathetic than you’d expect, and come up with a solution until you’ve got your finances under control. Investigate any insurance policies
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FINANCE
HOUSING HELP
If your home no longer meets your needs, here’s what you need to start thinking about…
MAKING ADAPTATIONS
Depending on the current layout, you might be able to make adaptations to your home. From installing handrails and ramps to lowering surfaces, getting a wet room or stair lifts and lifts, there’s lots that can be done. You might be eligible for funding from your local authority too in the form of a Disabled Facilities Grant (www.gov.uk/disabledfacilities-grants).
PERFECT PRODUCTS
you might have too – it could be that you have a policy you’re unaware of that can help make these payments in special circumstances. “It might be that you have income protection insurance, you might have short-term income payment protection, you might even have mortgage payment protection insurance, critical illness,” Nick says. “It’s worth checking out your policies. Speak to your mortgage provider; it might be that when you applied they insisted that you got some form of insurance and you might have cover you don’t expect.”
WHAT ABOUT WORK?
For those whose disability means they’re having to take time off work, there’s plenty to investigate. “You may be entitled to SSP – statutory sick pay,” Nick explains. “That’s for up to 28 weeks if you’re eligible. That would pay £88.45 a week. However, if you’re in the agriculture profession it could well be more. Some employers have a more generous sick pay scheme too. It all depends on the company.” Some employers offer ‘disability leave’, which is not counted as sick leave and can go on longer than 28 weeks. Look into your workplace pension too to see if it offers specialist ill-health benefits – you may be able to retire earlier. “It might be that your employer encourages you to go down the redundancy route, because for whatever reason they don’t think it’s best for you
to stay around,” Nick says. “You shouldn’t be pushed into doing such a thing – there are various laws which can help protect you.” If you are offered redundancy, do think about it carefully. While the pay-out might be attractive to help you get by in the short term, it could affect your chances of returning to that company or even the same industry in future. The Money Advice Service website has pages of content (www. moneyadviceservice.org.uk/en/categories/ care-and-disability) specifically covering disability issues, and they link out to other trusted services too – so get online and start researching, or give the advice line a call on 0800 138 7777. Whatever your circumstances, it’s worth reaching out and making sure you’re getting all the support you’re entitled to – and that all the organisations you’re dealing with understand your situation to avoid receiving hefty fines.
You don’t necessarily need to go at your current residence with a massive hammer and start knocking down walls. There’s an array of different products on the market which can boost your independence – and help you stay in your own home. Monitoring devices, communication aids, adapted kitchen aids – there’s lots out there. Check out the Disabled Living Foundation website at www.dlf.org.uk for ideas.
MOVING ON
If there’s nothing that can be done to adapt your home, it could be time to consider moving. More and more modern properties are being built with access in mind. You can search for accessible properties for sale and to let through the Accessible Property Register (www.accessibleproperty.org.uk), or you can seek out housing associations who specialise in accessible properties. If you have a disability and rent your home from your local authority or a housing association, remember they have a duty to adapt your property to meet your needs, or find you one that does – so speak up.
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ADVERTISING FEATURE
Make the most of ‘The Big Event’ with the Motability Scheme
T
he Big Event is returning to Manchester’s EventCity in 2017. Taking place in the city where it all started 10 years ago on Friday 5 and Saturday 6 May 2017, the two-day flagship event is the perfect opportunity for disabled motorists and their families to explore their motoring options. Here are our top tips to make sure you get the most from your visit: 1. Be sure to check out motability.co.uk/ thebigevent before visiting so you can find out all of the makes and models that we be on display and download the event floor plan in advance. The Big Event 2017 will showcase over 100 cars, from 27 manufacturers as well as Wheelchair Accessible Vehicles, adaptations, scooters and powered wheelchairs, all available to lease on the Motability Scheme. 2. Don’t forget to bring your driving licence with you. You can book a test drive on the day in a standard or adapted car with one of the friendly instructors.
3. Bring along a list of any questions you have about the Motability Scheme. Scheme partners Kwik Fit, RAC and RSA Motability will be on hand to answer any questions as well as a team of friendly Motability Scheme, DMUK and Driving Mobility Centres advisors. 4. Book a mobility scooter or wheelchair in advance, for free. There will be a limited number of scooters and manual wheelchairs available to borrow – book online from Monday 27 March 2017. 5. Bring the whole family along! There’s something for everyone at The Big Event. As well as the largest display of vehicles for disabled people, kids can meet the Scheme mascot Billy the Bear and enjoy free face painting and balloon modelling. 6. Be sure to redeem your token handed to you on arrival for a free cup of tea, coffee or a soft drink! 7. Stay up to date with all the latest news and photos from The Big Event by liking the Motability Events Facebook page at facebook.com/MotabilityEvents.
Find out more about The Big Event at www.motability.co.uk/thebigevent For more information on leasing a car, scooter or powered wheelchair through the Motability Scheme, visit motability.co.uk or call 0800 953 7000.
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MOTORING
The Motability Scheme Frequently Asked Questions
Car tax, petrol, insurance – owning a car can be pretty pricey. But that’s where the Motability Scheme comes in. We take a look at how the affordable car leasing scheme works WHAT IS THE MOTABILITY SCHEME?
Motability is a government-backed scheme which allows you to lease a brand new car – road tax, servicing and insurance included – every three years using qualifying welfare benefits.
WHO IS ELIGIBLE?
If you receive either the Higher Rate Mobility Component of Disability Living Allowance, Enhanced Rate of the Mobility Component of Personal Independence Payment, War Pensioners’ Mobility Supplement or Armed Forces Independence Payment you are entitled to sign up for the Scheme.
PICS: © MOTABILITY
HOW DOES THE SCHEME WORK?
Motability work alongside major car manufacturers to offer you the best prices around. Depending on which vehicle you choose, you will exchange all or most of the higher rate mobility component of your weekly disability allowance for the course of your three-year lease. Car payments are made up of two parts – your weekly rental, which comes from your qualifying benefit, and a one-off Advance Payment on higher spec models to make up the extra cost.
Advance Payments are usually around £500, with approximately two-thirds of Motability customers opting to go down this route. Best of all, when you lease a car through the Scheme, insurance, breakdown cover, servicing and maintenance, tyre and windscreen replacement are all included, so all you need to budget for is fuel.
WHICH CAR SHOULD I PICK?
Whether you are looking for a big family car to hold all of your equipment (and kids!), a ‘drive from’ car or a wheelchair accessible vehicle, there is something for everyone through Motability. On their website, they even have a car search tool so you can take time deciding what car is the best fit for you and your needs. Certain adaptations can also be made to your vehicle through Motability – for instance, left-foot accelerators will be covered by your package. Simply make an appointment at your nearest Driving Mobility Centre to get assessed and see what is available for you. Alternatively, you can head to an exhibition like One Big Day where Motability representatives and manufacturers will be happy to chat to you and answer any questions you may have.
DATES FOR YOUR DIARY
To find out more about the Scheme, you can pop into your loc al Motability dealer, or head to one of the Motability events tak ing place nationwide this year. 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
MORE INFO To find out more, head to www.motability.co.uk or call 0300 456 4566
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MOTORING SUPPORT
REMEMBER
If you’re new to disability and your mobility is affected, don’t forget to apply for a blue badge if you’re eligible. This entitles you to priority parking spots, and even free parking in some locations.
The keys to
Independence F
How do you get back on the road after becoming disabled? One specialist driving instructor goes through the process
rom the daily commute to weekend adventures on winding country roads, a lot of us wouldn’t be without our cars. But what if hopping behind the wheel isn’t as easy as it once was? Whether you’ve had a stroke, received a new diagnosis, had an amputation, or sustained a brain or spinal cord injury, one of the biggest worries many people have is – will I be able to drive again?
POSSIBLE
The good news for many is that – yes, it’s still possible. “You’ve got to meet the legal requirements with eyesight and so on,” explains Chris Kingsley, a driving instructor at QEF Mobility Services, which offers a range of different services, from its disability driving school for those starting from scratch to mobility assessments for people going back to driving. “If you use modifications to a vehicle to be able to drive, there is a restriction code they put on the back of the licence. But other that that, it’s an option for most people.” If you’ve already passed your test, you won’t need to re-sit it – once you pass your test, you’re set for life. However,
you have to tell the DVLA if you have a driving licence and develop a ‘notifiable’ medical condition or disability (such as epilepsy, a stroke, certain neurological and mental health conditions, physical disabilities and visual impairments) or if a condition or disability worsens.
ASSESSMENT
The DVLA might decide that you need to undergo an assessment to see whether or not you’re still fit to drive. These generally take place at Driving Mobility Centres, which you can find located across the country. “When you turn up for an assessment, we have no expectations whatsoever,” says Chris, who carries out assessments as well as being a driving instructor. “If you need modifications, we wouldn’t expect you to be able to drive with them straight away. We’ll give you some tuition. Then, when you’re ready to drive independently with the controls and you’re safe, you’ll have another
drive through to make sure everything’s fine.” From hand controls to modified pedals, adapted seating to wider mirrors, there’s a myriad of products and adaptaitons out there to make driving more accessible and comfortable – many are available on the Motability Scheme too. It’s best to go to a Driving Mobility Centre, like QEF’s Mobility Services, to get assessed and see what works best for you before purchasing. “Our aim is to help you to regain your mobility if you’ve lost it or help you to continue to be mobile,” says Chris. “The idea here is independent mobility – if it can’t be completely independent, it’s about making it easier for the person who’s helping you.”
There are an estimated 1.9 million licensed disabled drivers in the UK
USEFUL RESOURCES QEF Mobility Services www.qef.org.uk/our-services/qef-mobility-services 020 8770 1151
Driving Mobility www.drivingmobility.org.uk 0800 559 3636
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LIFESTYLE
Active GET
From joining the gym to signing up for a triathlon, there are lots of options out there to help you stay fit, healthy and active, whatever your ability. But where to start, and more importantly, how do you find the confidence? We chat to two fitness fanatics about overcoming obstacles and moving in the right direction
I
’m home – now what?” That was the first thing Amanda Worne thought when she discharged herself from hospital five months after a tragic cycling accident saw her break 11 bones, including three vertebrae. She had been training for a half Iron Man event when she hit a lamp post while out on her bike, and permanently damaged her spinal cord. Doctors told her she would never walk again. “But it was very important to me to get back to sport,” explains Amanda. “I needed something that would make me feel normal, something that still made me feel part of society, because I was struggling to feel that. But I felt like there was nothing out there.”
Prior to her accident, the busy mum of four had been a keen sports enthusiast – she was part of a local running club and regularly took part in triathlons. But she struggled to reconnect with sport after her accident, even after her friends raised money to buy her a hand bike. “It was lovely – I was still able to go out with my running buddies and be in that social situation, but it didn’t fulfil my running desire in the same way as before,” Amanda admits. “Although adaptations are available, your brain doesn’t just forget that your legs used to work. Using my arms didn’t make me feel like it did when I was out running – I just wasn’t getting complete satisfaction. But I wasn’t going to give up.”
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LIFESTYLE RECOMMENDATION
After a friend recommended she try horse riding, Amanda went on the internet and started searching for classes in her area. Today, she is an avid horse rider and has plans to enter local dressage competitions with her muchloved horse, Bird. “I love being on the horse – it makes me feel normal,” says Amanda. “I feel exactly the same as any other person. I’m not in an adapted piece of equipment. I have the saddle, and I hold the reigns. “That’s what’s so great about sport,” she adds. “It’s just whatever you want it to be. You never know, you could discover you have this amazing talent and then find yourself in the Paralympics. Don’t think that because one door has shut that you’re stuck – when one door closes, many more will open. You just have to be willing to move forward.” Amanda also credits sport with helping her to stay mentally and physically fit. “It keeps my digestive system ticking over and looks after my circulation which is essential,” says Amanda. “But the mental side is just as important – you can feel quite isolated in a wheelchair. But sport has helped me meet some lovely friends, it’s brought my confidence up. I feel strong now – not just on the outside, it’s given me inner strength.” But Amanda admits it’s all about baby steps. “Don’t ever think it’s too late to start – this is the time in your life when it’s the most important,” she explains. “If you’re worried about not being fit enough, start with something easy. Before I felt confident, my little boy would go on his skateboard, I’d be in the wheelchair and we’d just go around the
“I love being on the horse – it makes me feel normal. I’m not in an adapted piece of equipment. I have the saddle, and I hold the reigns” Amanda Worne
block. Then when I had the handcycle I would pull him around. It’s about building up your confidence with your family and friends, and then you can join a group afterwards.”
STARTING POINT
If you’re stuck on how to find support from different sporting organisations, Amanda recommends contacting the EFDS or even taking a look online to see what’s happening nearby. “And if you can’t get onto the internet, don’t be afraid to ask someone to do it for you. It is all about making it work for you,” she points out. “You can wait all day for something that might never happen. So take charge of what you can take control of. “That’s what’s hard about a disability – you lose so much control. And that’s why sport is so important – it can help give you it back. I go out, I control how fast I go, I choose the route. There are other parts of my life where I’ll never have that. But sport gives me control over things again.” Former T35 sprinter and Paralympian Sophia Warner agrees. “It can be a challenge to find something out there for you and your needs. It can be really hard, and you may have to rely on other people or look for adaptations, but to some extent, I would say it always comes down to yourself.” It was Sophie’s can-do attitude that motivated her to launch the Superhero Series, a mass participation event aimed at encouraging those with disabilities to get into sport. The triathlon allows disabled and non-disabled people to participate either individually or in a team and to pick and choose the activity they want to take part in. “The whole creation of the Series comes purely from the frustrations I had
taking part in mass participation events,” explains Sophie, who has cerebral palsy that affects all four of her limbs. “I just think it is a crying shame when there are so many mass participation events out there for able-bodied people but there’s nothing that people with a disability can do comfortably and fully be themselves. I just want them to enjoy sport for fun – it doesn’t have to be competitive. It can just be a challenge they can set themselves, a chance to do something new and have some fun. That’s what it is all about.”
USEFUL ORGANISATIONS WheelPower www.wheelpower.org.uk WheelPower organise and support wheelchair sports at all levels UK-wide, putting on events for juniors and seniors, and for rehabilitation purposes. Parasport www.parasport.org.uk Use the Parasport site to search for clubs suited to your disability in your local area. Disability Snowsport UK www.disabilitysnowsport.org.uk DSUK offer opportunities for disabled people to take part in snowsports. English Federation of Disability Sport www.efds.co.uk The English Federation of Disability Sport work to increase opportunities for disabled people in sport and physical activity across England. Superhero Series www.superheroseries.co.uk The first Superhero Series triathlon event is taking place at Dorney Lake on 19 August. You can participate as part of a team, or fly solo.
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SUPPORT
It’s good to
TALK
When you develop a physical disability, the mental and emotional hurdles that follow can be overwhelming. We find out more about the support that’s out there to help you come to terms with your new way of life
I’M COPING
DON’T WORRY ABOUT ME
I’M OK
LIFE IS GOOD
HELP
EVERYTHING’S FINE
I’M GETTING BY
IT’S NO BIG DEAL
I’M ALL RIGHT
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SUPPORT
T
he first thing I thought about when I got my diagnosis wasn’t even, ‘I have cancer’, but, ‘What’s going to happen with my son?’” Single mum Florencia Pistritto was just 29 when she was diagnosed with bone cancer and was immediately struck with how her condition would impact her young son Marco, who has autism. “I told my oncologist, ‘I can’t die, I have a child with special needs.’ It was very shocking and very scary,” she explains. Florencia was told by doctors that she would have to have five chemotherapy sessions to shrink the tumour, and surgery to remove her tibia, knee and part of the femur in her leg and replace it with a titanium prosthesis. “[Hearing the news] was like losing part of your body,” says Florencia. “I had never had surgery in my life so I had a lot of questions. I was wondering how my leg would be afterwards, if I would be able to walk, how I would look after Marco. It was so much to take in.”
STRUGGLE
As well as dealing with the aggressive treatment and her caring role, Florencia lost her job and struggled to find others in a similar situation because her rare form of osteosarcoma bone cancer is more commonly found in children as opposed to adults. “I have a lot of insecurities, I’m very selfconscious about the leg,” says Florencia. “I feel I am still grieving for my leg. It turns your life upside down. People think you’re OK after treatment and it’s not like that. “I survived but I’m paying a high price for it. I have a prosthetic leg, hearing problems and chemotherapy brain.” For many people like Florencia, the physical impact of a long-term illness or disability doesn’t show the whole picture. In fact, while physical difficulties can improve over time as strength progresses and scars heal, the unseen mental effects of a condition can live on for far longer. Different medicines, strange equipment, additional problems to worry about – sometimes it can feel like you’re having to discover a whole new way of living. And that can take its toll not only on your body, but on your mind too.
IMPACT
“The impact of a disability can be huge,” says Chris O’Sullivan, spokesperson for the Mental Health Foundation. Chris himself identifies as disabled and believes the mental repercussions of a psychical illness or disability isn’t spoken about enough.
“What a lot of people don’t understand is the mental stress and challenges that being disabled can bring. It all makes it far more likely that a person will face a mental health problem” “What a lot of people don’t understand is the mental stress and challenges that being disabled can bring – from facing discrimination to inequality and new barriers. It all makes it far more likely that a person will develop a mental health problem. The things that are asked of them might just overcome their ability to cope.” The struggle to balance your mental health needs, especially when you are spending so much time thinking about your psychical condition, can make everything feel that bit more overwhelming, sometimes culminating in stress, anxiety or even depression. “It can be hard if you’re receiving lots of treatment for a particular condition,” adds Chris. “You might try to minimise what’s happening in your head because of the challenging treatment you are going through physically.” Chris also understands that some people are unwilling to open up about their problems due to the negativity and misunderstanding that continues to surround the topic of mental health. “The majority of medical professionals will understand that you are experiencing a big change in your life,” says Chris. “But being disabled doesn’t bar from the sense of stigma around mental health. Often we see that people who are struggling with stress feel they can’t come forward because they are ashamed or they fear the reaction people will have.”
SPEAK OUT
But speaking out might be easier than you’d think. You may already be in touch with lots of health services and have developed a strong relationship with your doctors. If not, there are still plenty of organisations you can turn too. Helplines like the Samaritans, Anxiety UK and Mind give you the opportunity to chat openly to someone about any problems you are facing and can help you consider your next step.
“The value of being able to release something you kept in your head to someone you trust is massive in terms of helping you move forward,” says Chris. “That might be a health professional, it might be a social worker, it might be a friend, or it might be a helpline. There is always someone that you can turn to.” Small changes can also make dramatic improvements to your mood and the way you feel. Mediation, yoga, or a new sport or social activity are all great ways to boost positivity and reset your brain. “One of the things I often say to people is that depression and anxiety rob you of the ability to stay connected to the things that keep you well.” To counteract that, Chris advises getting outdoors, trying to get more sleep and exploring different calming techniques. “Start to think about going for walks and take a look at your sleeping pattern. Start considering meditation – we’ve seen evidence that all those things can help people with mental health problems feel much better. It’s never too late to start.” For others, seeking professional support like counselling, medication or therapy can also provide huge relief. “The balance that works varies in each individual, so it’s not a case of saying that everyone needs therapy or medication or self help – it can be a mixture of all of these things,” Chris says. “It’s important to know everyone is different.” Although there are hundreds of options available, the most important thing is that you seek advice as soon as possible – and get talking. “The sooner you get help the easier it is,” says Chris. “Understanding that you have the right to seek help is critical. And anyone with an ongoing health problem deserves to have their mental health safeguarded and addressed at the first sign of a problem. You don’t have to do it alone.”
USEFUL CONTACTS Macmillan Cancer Support www.macmillan.org.uk 0808 808 0000 Mental Health Foundation www.mentalhealth.org.uk Mind www.mind.org.uk 0300 123 3393 Samaritans 116 123
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SUPPORT REAL LIFE
BECOMING A CARER Becoming a parent for the first time is daunting for anyone. But when your child is born with severe disabilities, your whole life can be turned upside down. One woman shares with NOVA about her journey as a new mum and a carer
H
“I had to learn to be a carer from the moment I could stand up from my C-section”
UNCERTAINTY
COPING
“The first thing you feel is the shock that you have become a mother in completely different circumstances to you were expecting,” says Dawn. “For both my son
and daughter, we were given the absolute worst case scenarios but no one could tell us anything for certain. We were just left with lots of labels of what could happen.” Thankfully, the twins defied the odds and survived. But now, at age six, they continue to rely on round the clock care. “I was aware from day one that I was a carer,” Dawn says. “I don’t remember the experience of being a new mum. I had to learn to be a carer from the moment I could stand up from my C-section. I had to learn how to feed them through their nasal gastric tubes. I couldn’t hold my daughter for three weeks. I didn’t get to have that physical contact and that broke me.”
On top of all the emotions, Dawn says one of the hardest things was coping financially. As a full-time carer, she was forced to give up her business and the
family’s income was cut in half – and their debts mounted. Her own health has suffered too – right now, Dawn is awaiting a diagnosis of chronic fatigue syndrome and regularly receives counselling and osteopath treatment. “Everyone is pretty much in agreement that I have trauma from the birth – I have PTSD, of which fatigue can be a symptom,” she says honestly. “The cost to me has been massive. But I would never swap my kids for anything. They are incredible – just look how far they’ve come.” Carers across the country report feelings of anxiety, stress and pressure just like Dawn – but you don’t have to go through it alone. Look into local carers organisations and groups for support and information on what’s available in your area, from benefits to short breaks. Carers UK’s Adviceline (0808 808 7777) is a great resource, or you can head to the website, www.carersuk.org. Reach out and get the support you deserve.
PIC: ©CHRIS STEELE-PERKINS
“
earing the news was like a moment of grief,” says Dawn. “People say that you can’t call it grief – that you can’t grieve something you’ve never had – but you can. As a mother, you can. You grieve when you wonder what your child could have been and you grieve for the fact that your child will grow up in a society that is not very disability-friendly.” Dawn was 38, and just 26 weeks pregnant, when she gave birth to her twins Ethan and Grace. They were so small that Dawn could fit them in her hand and together they weighed less than three pounds. One day after the twins were born, Dawn and her husband were told that Ethan had had a stroke in the womb and it was likely he might never walk, talk or see. A week later they were told that Grace had contracted necrotising enterocolitis and only had 48 hours to live.
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SUPPORT
Sickness and in Health? In
When you acquire a disability, it’s not just you who feels the impact – those around you have a lot to come to terms with, understand and adapt to as well. And it’s often those closest to us who struggle most. We find out more about how to overcome the challenges that come with disability to help your relationship go the distance
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LIFESTYLE FINANCE
W
hen you meet The One, you’ve often got a pretty clear picture of how it’s going to go. They’ll be by your side through thick and thin. You might travel the world together. Get married. Have kids. Or get a dog. They’ll be there for you through the good times and the bad. They’re your best friend. You’re a team. But sometimes life likes to throw a curveball your way to test this. And becoming disabled is possibly one of the biggest challenges out there – both for the person who becomes disabled and their partner. Despite the classic wedding vow of ‘in sickness and in health’, stats have shown that couples where one person experiences the onset of disability or a serious illness are more likely to divorce. But why is this the case?
CHANGING DYNAMIC
First off, disability can change the dynamic of a relationship. Some people go from being a partnership, to carer and cared for person – and this isn’t always a situation that people are comfortable with and adapt to easily. “That is the biggest issue that comes through the door,” says Denise Knowles, a relationship counsellor with Relate, the UK’s largest provider of relationship support. “People say, ‘I don’t want to be his or her carer.’ They can’t go from dealing with them hygienically in intimate ways to making love to them. For the carer, it’s particularly difficult, but for the person with the disability, they often lose their confidence, their dignity is often disrupted. Their pride. They can feel very much of a lesser person than they need to.” The mental and emotional impact of becoming disabled can be a lot to deal with for both parties too. For some, a diagnosis is a relief and they quickly adapt to their new way of life. For others, it feels like the end of the world. It can be tempting to shut yourself off, to distance yourself from others so as not to become a burden. And if you’re in a relationship, it can be really tough for your other half to watch that happen. Often, they’ll be the closest person to you – and overnight that can change. Moods change, rows happen and the cracks start to show. “I think a lot of people, when they get a diagnosis of a disability or they become disabled through an accident, they immediately go to the worst case scenario,” says Denise. “They think, ‘This is it. Life’s never going to be the same
about it, means no surprises further down the line, and that open communication makes for a much stronger relationship.
OPEN UP
Seeking professional help is another option. While not for everyone, relationship counselling can give you the opportunity to explore what’s changed in your life, and what’s changed between you and your partner. You can attend as a couple or individually, and it’s all confidential. “It’s about giving couples, or individuals, the opportunity and the space to explore and express what’s going on; to actually feel that they can be supported,” Denise explains. “They’re not going to be judged if they say, ‘I actually hate him or her at the moment.’ It’s just a space for people to be able to
“It’s about giving yourself some time in those initial stages to recognise that things are going to be different”
Denise Knowles, Relate
again.’ And many people feel like they didn’t sign up for this.”
WORKING AT IT
However, it doesn’t have to mean the end of the road. While many couples do feel the strain, you don’t have to give up at the first hurdle. Denise says that there are steps you can take to give your relationship a chance – but it might take a lot of work from both parties. “It sounds like an old cliché, but you have to give it some time,” Denise advises. “You kind of go through a mourning process. First and foremost, you’ve got the absolute shock of finding out that this is the case. “People can go into denial about it as well. As symptoms progress, they come out of that shock and denial stage and they can get quite angry; they can get upset with each other. They’ll row. Their expectations, their dreams have been shattered or completely disrupted. It’s about giving yourself some time in those initial stages to recognise that things are going to be different.” Denise also advises getting informed – and making sure those around you are clued up too. Contact charities in your area, particularly charities who specialise in your condition, for information and support. Having the facts and knowing what to expect, as well as talking openly
discuss what’s going on, to understand all of that.” Relate offer counselling services that cover a variety of bases, including family counselling, sex therapy, and relationship counselling, both for new and long-term relationships. They’ve got telephone and web-based services if you want to talk and can help you find face-to-face counselling in your area too. Because talking is the first step towards mending any issues that arise – and while you might have a lot of really challenging times ahead, it’s always easier to tackle them as a team rather than alone. “It’s about recognising that this is something that will impact on the whole system, not just the one person,” Denise says. “If that one person believes that they have to deal with it on their own, that’s where the isolation comes. It’s about recognising that you’re not alone and there are lots of ways that you can improve the situation. It’s not what you wanted, you wouldn’t wish it on anybody else, but there are people out there who can help you.”
GET SUPPORT Relate www.relate.org.uk 0300 100 1234
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LIFESTYLE FINANCE
Disability can present a few obstacles when it comes to travelling – but there are ways to make sure your trip goes smoothly, whether you’re staycationing or going further afield. NOVA has the lowdown
Accessible ADVENTURES T
he highlight of the year for most people is the moment when they finally book that long-awaited break. Sand between your toes and pina-coladas in the sun – it’s impossible to be stressed on holiday. Or is it? For those new to disability, the idea of going on holiday can seem like a monumental task, full of hurdles and disappointment. But it doesn’t have to be that way. From accessible transport to wheelchair-friendly tourist attractions and accommodation, travel doesn’t have to be a daydream.
USE A DISABILITY-FRIENDLY TRAVEL AGENT
Take the stress out of sightseeing by arranging all your travel and accommodation needs through a specialist company. Specialist tour operators are all too aware of the challenges faced by disabled travellers and will help resolve common issues that standard travel agents might never consider. Best of all, most are run by experienced disabled travellers who have tried and tested the itineraries they offer. Check out Sage Traveling (www.sagetraveling.com), Limitless Travel (limitlesstravel.org) or Disabled Holidays (www.disabledholidays.com) for more.
PLAN AHEAD
It might not be spontaneous, but calling ahead to let services know of any access requirements you have will save some major headaches. Most airlines have a specialist assistance department – they’ll manage your journey from the drop-off point at your departure airport, and deal with your baggage through all the connections, right the way to your arrival at your destination airport. Staying closer to the ground? Use the web or call in advance to find out about access at bus stops and train stations. Rail users can check out the National Rail website (www.nationalrail.co.uk) for accessibility info to help you get from A to B.
MAKE BOOKING EASIER
For those who struggle with websites or phone calls, Skyscanner has launched a Facebook Messenger bot allowing users to search for flights conversationally online. The flight search bot will respond to any queries a traveller may have, from flight times to prices. Messenger users can then follow a link to the site to book their chosen travel itinerary. The Skyscanner bot can be found by visiting m.me/Skyscanner.
LOOK OUT FOR DISCOUNTS
In the UK, the Disabled Persons Railcard (www.disabledpersonsrailcard.co.uk) costs £20 for a year, and you and a friend get a third off rail travel across Britain. Local bus services also provide discounts for disabled people and their carers so always ask, and if you have a visual impairment, you’ll be entitled to free or discounted travel nationwide.
GET INSURED
If you’re travelling overseas, travel insurance is crucial in case you end up needing medical care. Make sure you get a policy that covers your disability or any health conditions you might have – specialist providers like InsuranceWith (www.insurancewith.com) and Fish Insurance (www.fishinsurance. co.uk) are a good starting point.
Specialist tour operators are aware of the challenges faced by disabled travellers and will resolve common issues that standard travel agents won’t consider
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That’s
Entertainment By Emma Muldoon from www.simplyemma.co.uk
Dealing with a disability can feel isolating, but thanks to a huge array of events, venues and opportunities, it’s easier than ever to discover new entertainment options and get socialising. We hear from one woman about how her disability taught her to move out of her comfort zone and get social
B
eing told you have a disability can be overwhelming, not to mention frightening, but it doesn’t have to be. I learned to embrace my disability from the age of seven years old when I was diagnosed with the progressive muscle-wasting condition, Limb-Girdle Muscular Dystrophy. From then on, I was determined not to let my disability stop me from doing what I wanted to do in life. After school, I went on to study at university, found employment, learned how to drive a fully adapted car, found love and so much more. I believe it’s important to keep doing all the social things I love as well. Some of my main passions are going to gigs – sometimes twice a month,
which has given me the opportunity to experience first-hand how music venues are becoming more accessible for people with disabilities through better awareness and training. But the biggest change for me was growing to love extreme sports. Until last year, I never would have thought I could possibly try extreme sports due to the nature of my disability. I require 24/7 assistance with almost everything, from personal care and meal preparation to even scratching my nose. So I was surprised to learn of so many accessible activities for people with a range of disabilities. After discovering what was possible, I made it my goal to try as many sports and activities as I could. The first being accessible skiing
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LIFESTYLE with the help of Disability Snowsport UK (www.disabilitysnowsport.org.uk) at Snow Factor in Glasgow. My first lesson only lasted an hour but I loved every minute of it. The adrenaline and feeling of freedom as I skied down the slopes was a feeling I’ll never forget. More recently, I got to try a number of accessible outdoor activities during a weekend break at Calvert Trust Kielder (www.calvert-trust.org.uk). I chose to try the king swing, zip line and wheelchair abseil, as well as swimming in the indoor hydrotherapy pool. Every activity at Calvert Trust is accessible for people
“I was determined not to let my disability stop me from doing what I wanted to” with disabilities, regardless of ability, so nothing was off-limits or difficult to do. They encourage people with disabilities to challenge themselves and support them in reaching their full potential through the different activities. Travel is another big passion of mine, whether it’s taking a road trip or flying off to a dream destination. While travelling with a disability can be challenging, it is always completely worth it. There’s no better feeling than exploring different towns, cities and countries. It helps to research and plan as much as possible before taking your trip. The most important factors are researching the accessibility of accommodation, tourist attractions and transportation before you go. Having a disability doesn’t mean an end to doing the things we love or wish to do. It’s just the start of new experiences, but from a different perspective. We’re only limited by the limits we set ourselves.
EMMA’S TOP TIP
Get yourself a CredAbility Access Card (www.accesscard.org.uk). This is a great scheme for disabled giggoers and fans of live events. The card identifies the support and adjustments you require based on your disability, and displays them as symbols on your card. I love it because it makes booking tickets easier and more discreet as I don’t need to explain my requirements to every venue staff member.
NOVA MAGAZINE’S
TOP SOCIAL PICKS FOR ANIMAL LOVERS Monkey World, Dorset
www.monkeyworld.org Home to more than 150 primates, this animal sanctuary is the perfect place to get out your comfort zone and monkey around. Whether you’re looking for some family fun (or you’re just a big kid yourself), 65 acres of Purbeck countryside provide the ideal space for some accessible adventures. Get up close and friendly with 15 different species of primate and watch as they swing from the ropes, trees and ladders. Wheelchairs and motorised scooters are there for you to borrow, plus there are three sensory statues for visually impaired visitors to touch and learn more about the monkeys.
FOR ADVENTURE SEEKERS Catton Hall Shooting Ground, Cheshire
www.cattonhall.co.uk Fancy a great escape? Based in the heart of Cheshire, Catton Hall specialises in outdoor activities including clay pigeon shooting, quad biking, archery, falconry, air rifling and paintball games. All but one of the traps are fully accessible, reached from a solid path, making it the perfect place to enjoy a wild day out with a group of friends.
FOR FAMILY FUN Legoland, Windsor
www.legoland.co.uk Who wouldn’t want to live in a world made entirely of Lego? From wild rides and a splash safari to miniature landmarks of London, Legoland is
95% accessible for wheelchair users. Best of all, they have a helpful guide for guests with disabilities, giving you a breakdown of accessibility throughout the park, including height restrictions, safety requirements and relevant information regarding noise or light levels.
FOR GREEN FINGERS The Eden Project, Cornwall
www.edenproject.com Nature lovers unite! The Eden Project is one of the UK’s most beautiful attractions, filled with diverse plants, giant sculptures and art and performance events throughout the year. Special events include a temporary ice rink in winter, with a special ice-chair for wheelchair users. Participation of disabled children and adults is encouraged at all special events, making it a fantastic place to meet new people.
FOR THE OUTDOOR ADVENTURERS Mountain Railway and Ski Centre, Aviemore
www.cairngormmountain.org A bar, shop and restaurant almost 1,100m high in the heart of the Highlands might not sound accessible – but we promise it is! The breathtaking views from Cairngorm Mountain’s viewing terrace are worth the trip – but you can also enjoy epic snow adventures. And if there’s no snow, visitors can still take a whirl on the fully accessible funicular. Available all year round, it’ll will whisk you to the summit in just eight minutes, where you can take in views of the stunning Loch Morlich and the Spey Valley.
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FINANCE LIFESTYLE
5 reasons
to visit a disability exhibition
Seen independent living exhibitions advertised in your area but not sure what you’ll get out of them? We round up a few good reasons to head along
1
YOU GET TO MEET THE EXPERTS
If you’re new to disability, the world of products, support, benefits, funding, adaptations, housing and beyond can be a total minefield – and sometimes, getting to speak to someone who knows what they’re talking about face-to-face can really help. Exhibitions and specialist disability events host exhibitors from a range of backgrounds who will be positioned to answer your questions, share information and point you in the direction of support. And you might make some great new contacts along the way too.
WHAT’S ON FOR 2017 NAIDEX
28-30 March, NEC Birmingham www.naidex.co.uk Naidex (pictured above) is Europe’s biggest independent living exhibition, running across three days – well worth checking out.
KIDZ TO ADULTZ EXHIBITIONS
Various dates and locations www.kidzexhibitions.co.uk With shows taking place in Coventry, Reading, Edinburgh and Manchester, this is a great event for parents, carers and young people alike.
2
TRY BEFORE YOU BUY
3
ACCESS IS KEY
If you’re in the market for a new product, you could purchase it online – but what if it arrives and it’s totally different? From wheelchairs to beds to riser recliner chairs, you can get hands-on with a range of items and see if they’ll meet your needs.
With disability exhibitions, access is going to be a priority – so you know you’ll be able to have a day out where you won’t get trapped, where accessible parking and bathroom facilities will be on offer and everyone will understand your needs. It really takes the fear factor out of a day out.
DNEX
27-28 September, Newcastle Racecourse www.disabilitynorth.org.uk DNEX rounds up a mix of interesting exhibitors, covering everything from motoring to technology.
INDEPENDENT LIVING SCOTLAND
4-5 October, SEC Glasgow www.independentlivingscotland.org Now in its third year, Independent Living Scotland is a fantastic event for those keen to check out new products and get information.
4
DISCOVER SOMETHING NEW
5
IT’S MORE THAN AN EXHIBITION
The best thing about these events is there’s always something there you didn’t know existed. Clever tech, interesting charities, handy home aids – it’s all there. Take your time browsing the stands to get a feel for what’s out there. You’ll be amazed by what you discover.
The great thing about disability exhibitions is that, nowadays, it’s more than people at stands trying to sell products. Many have seminar programmes featuring respected names in the field – and sometimes even celebrities – along with opportunities to try out different sports, test drive cars and even watch performances. It makes for a really informative, useful and fun day out. So what are you waiting out? Book tickets for your nearest event now!
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LIFESTYLE
Product
ROUND UP The marketplace is bustling with handy products which can make life a little bit easier if you have a disability. We’ve taken a look at some of the best buys out there
J-SHAPE RING PULL CAN OPENER
If you’ve got weakness in your hands, this useful ring pull opener is a worthwhile addition to your kitchen drawer. Just place it under the ring pull and pull the handle. Best of all? The controlled opening means you won’t splash any food onto your clothing – and it’s dishwasher safe. Co-operative Independent Living, £3.34 inc VAT www.co-operativeindependentliving.co.uk
GRIPPOZ
These wheelchair push-rim covers mean you get added grip and increased manoeuvrability of your wheelchair. Made from hardwearing silicone, the robust design also prevents your furniture from getting bumped and scraped. Available in black, orange or pink. Grippoz, £69 exc VAT www.grippoz.co.uk
BLANKEN CARE ADULT CONTISLIPS
Blanken Care’s soft, breathable adult Contislips can hold over two litres of fluid and are ultra fast at absorbing. These bamboo slips are so soft and luxurious, you’ll hardly know you’re wearing them. Blanken Care, from £43.50 www.blankencare.com
NO BEND PET BOWL
Got a four-legged friend but difficulty bending means filling their food bowl is an issue? Enter the No Bend Pet Bowl! This nifty invention has a long handle, meaning you can easily lift the bowl from a standing or seated position – and your pet won’t go hungry. Simplelife Mobility, £16.99 exc VAT www.simplelifemobility.co.uk 39 NOVA ISSUE 2
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LIFESTYLE
MOUNTAIN TRIKE QUOKKA SMARTPHONE CASE
This durable smartphone case clips onto most wheelchairs, making it easy to access – and you don’t have to worry about your phone falling from your pocket. Available to fit a range of models, including iPhones, Samsung, Google, HTC and Sony. It also has a compartment to hold your money, bank cards or keys. Better Mobility, from £22.80 inc VAT www.bettermobility.co.uk
RADAR KEY
GET IN THE KNOW
Do you understand your consumer rights? Rica, a consumer research charity working with older and disabled people, has information about your rights when buying online and in person. Head to www.rica.org.uk for more.
The National Key Scheme (NKS) gives disabled people access to over 9,000 locked public toilets nationwide – and this design from the Blue Badge Company has a blue heart fob which gives optimum grip and leverage. Blue Badge Company, £6 www.bluebadgecompany.co.uk
This all-terrain wheelchair is perfect for the adventurers out there. Whether you’re keen to tackle a muddy woodland trail, a trip to the shops or even a mountain climb, the Mountain Trike’s air suspension gives a smooth, comfortable ride. The unique lever drive system also lets you keep your hands clean and dry. Mountain Trike, £4,395 (includes delivery and three-year warranty) www.mountaintrike.com
ICARE SHOWER
The iCare shower is the world’s first Bluetooth-controlled electric shower. You have the option to control it via a wireless remote control or an iPhone app, meaning you can switch it on and control the temperature – no bending, stretching or struggling to reach! AKW, POA www.akw-ltd.co.uk
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WORK
Back to
WORK If you’ve had to take time off work, or leave your job completely, you might be wondering what your rights are. We take a look at what to expect and who can help you YOUR RIGHTS Familiarise yourself with the Equality Act 2010. By law, your employer can’t discriminate against you because you’re disabled, must keep your job open for you and can’t pressure you to resign if you’ve become disabled, and has to make reasonable adjustments to the workplace, the job you do, or the terms and conditions of your employment.
ACCESS TO WORK Access to Work is a government fund which is used to pay for ‘reasonable adjustments’ in the workplace to help you overcome any obstacles that might prevent you from doing your job. It’s not means tested, and anyone aged 16 or over with a disability and who lives in Great Britain can apply. You can find out more at www.gov.uk/ access-to-work.
TALKING ABOUT IT If you’re looking for a new role, you don’t have to disclose your disability until after you’ve been offered a job. However, if you want to get access to adjustments and adaptations that will help you with the application and interview process, it is helpful to say what your requirements are. Disclosure is a choice, but once in work, it’s wise to be open with your employer about your disability – that way they’ll have a better understanding of how best to support you.
ASKING FOR HELP If you need any advice, there are different organisations you can turn to. Your local Jobcentre will have a disability adviser who can offer support, or if you’re a member of a trade union, they’ll often be able to act on your behalf. Disability employment specialists Remploy (www.remploy. co.uk) run special work advice clinics where their experts can offer advice and discuss any concerns you have about returning to work.
TIME OFF If you’re having to take time off work, you may be entitled to statutory sick pay for up to 28 weeks, but some employers have more generous sick leave pay. Some companies offer ‘disability leave’ too, so you get paid extra sick leave if you can’t work for an extended period, which is recorded differently to standard sick pay. It can also be used to take time off for treatment or to allow you to recover from treatment.
PHASED RETURN When going back to work, it’s a good idea to ask about a phased return rather than going straight back to it full-time. This could mean gradually building up your hours, working from home a couple of days a week and reviewing your workload as you go along. This counts as a reasonable adjustment, so don’t be afraid to ask when you’re looking at going back to the workplace.
WHAT DO WE MEAN BY ‘REASONABLE ADJUSTMENTS’? Reasonable adjustments are alterations to your working environment or job role which make sure you’re not at a disadvantage. This can include flexible working hours, time off for appointments, more breaks, alternative duties, adapted equipment, adjustments to your working environment or providing additional services such as an interpreter or support worker.
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THE CAREER SWAP
What happens when you receive a diagnosis, your condition worsens or your caring responsibilities go up a level, meaning you can no longer continue in your current line of work? Two women share their experiences, and we offer some advice for those in the same position FROM: Recruitment Firm Boss TO: Cake Decorating Teacher
M
um Laura Moore gave up her successful recruitment business following the birth of her son William, who is seven. William was born with quadriplegic cerebral palsy, has epilepsy, visual impairment and microcephaly, and requires 24-hour care. For Laura, juggling a demanding business and motherhood was out of the question.
“When William was about two, we started to fundraise to adapt our house for him so it was wheelchair accessible, and as part of that I learned to decorate cakes,” Laura explains. “That turned into a passion which has in turn led to me owning my own cake decorating school.” After her fundraising cakes were such a success, Laura set up her own business, Enchanted Cupcakes (www. enchantedcupcakes.co.uk), which she organises around William’s needs – she’ll arrange classes when he’s at school or receiving respite care. She runs the business from their home in West Sussex, which is now fully wheelchair accessible, so it’s open to everyone. “I can be home during the school holidays and I’m able to attend all his hospital appointments,” Laura says. “I don’t have to worry about upsetting an employer either, considering the amount of time off I have to take for William!” Having worked in sales and marketing all her life, Laura’s been able to use the skills she learned in her old career to boost her new business, from marketing herself to find new students to blogging on the company website. “My previous jobs have all involved face-to-face customer liaison which is essential for teaching,” she explains. “I used to do a lot of writing job specs, adverts and CVs too, which has helped with the blogging side. “Prior to having William, I wasn’t even
“Prior to having William, I wasn’t a creative person, so this change of career has come as as shock to me and everyone I know, but it’s been brilliant – I now love my job” a creative person so this change of career has come as a shock to me and everyone I know, but it’s been brilliant. I now love my job.”
MAKING THE MOVE
If your disability or new caring role means you can’t do your old job, here are a few pointers to help you move onto the next step Don’t write yourself off
For some, returning to work won’t be possible, but don’t automatically assume that that’s the case for you. Explore your options – look at roles with fewer hours, which offer flexibility or are in the same or similar industry. You’ll be surprised by what’s available.
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WORK FROM: Speech and Language Therapist TO: Gardening Blogger
N
iki Preston has a condition called phocomelia, a rare congenital deformity which means the hands or feet are attached close to the trunk, with the limbs being underdeveloped or absent all together. While Niki was able to work for many years, at the age of 47, she was forced to retire through ill health. “I have always worked with children with special needs,” Niki explains. “I started as a learning support assistant in primary schools then moved on to secondary school learning support and, at 35, I retrained as a speech therapist. I loved every minute of my job and was totally gutted when my increased pain meant I could no longer carry out the physical demands of the role.” Staying at home all day, Niki started to feel bored and quite low. One day, she looked out into her back garden and had a ‘light bulb moment’. She set up a gardening blog at www. nikipreston.co.uk to record her progress, and things steadily gathered pace. “I very cheekily messaged Amateur Gardening Magazine to ask if they would let me write for them and they said yes,” says Niki, who is known on her blog as The Two Fingered Gardener. “Since then I’ve written for The Guardian, BBC, Garden News, Disability Now and so many more. I have also tested products for big companies, including Wolf-Garten, Wilkinson Sword, PETA-UK and Forest Garden.” She says that her former job has benefited her writing career, mostly in
terms of communication and confidence. “Attending meetings and helping parents cope with any issues helped me become more confident in myself and my abilities to communicate,” she explains. “And communication is a huge part of being a blogger.” While she’s currently recovering from
Transferable skills
Think of what you’ve learned
Take a look at your career to date and identify the skills you’ve picked up along the way. Many of these will transfer to another role, such as teamwork, communication, negotiation, marketing, sales, or IT. This is what you’ve got to use to sell yourself!
Keep an open mind
Don’t automatically go for jobs associated with your old one. With your skill set in mind, search job boards – both mainstream ones like Indeed.co.uk and specialist services such as evenbreak. co.uk and disabilityjobsite.co.uk – for jobs which match your experience.
“I was totally gutted when my increased pain meant I could no longer carry out the physical demands of the role”
Many people worry that their disability will be seen as a hindrance – but it actually gives you lots of experience which other candidates won’t have. Disability teaches you skills like problem solving, resilience, organisation and communication – so you can shout about this to potential employers on your CV or at interviews.
Fly solo
If you have the skills, experience and ambition, why not set up your own business? You could build a company round a passion, look at what you used to do in your old job or go for something completely different – maybe even
hip surgery, Niki’s blog has taken a back seat for now, but she can’t wait to get outdoors and back to work as a blogger, journalist and reviewer. “I truly love doing what I do now,” she says. “I can do it when I want. If I’m having a bad, painful day I don’t need to worry. It’s great.”
connected to your disability. Find out how to start, and explore funding options, at www.gov.uk/set-up-business.
Ask for help
If you’re struggling in your mission to change careers, don’t be afraid to reach out for help. Specialist organisations like Remploy (www.remploy.co.uk) or Shaw Trust (www.shaw-trust.org.uk) have lots of advice and information for people with disabilities looking to change careers, or get in contact with local recruitment agencies, charities or your nearest Jobcentre Plus. Changing careers isn’t impossible – so get out there and show the world what you’ve got to offer.
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SUPPORT REAL LIFE
Going the
Extra Mile
When Caroline Rutley-Frayne was involved in a road accident in 2008, she thought her life was over. Eight years down the line, she’s pushing herself to make a difference in the lives of others
C
aroline loves a challenge – always has, always will. But when a motorcycle accident in November 2008 robbed her of her right arm, right leg, and her husband Simon, she didn’t see how she could ever get back to her active, fun-loving ways. “For the first three months, I really didn’t do anything,” she explains. “I spent that time just wailing really – understandably. I had three children, at the time I had one grandchild, and it’s about them also. They’ve lost a great deal; it’s not just me who’s lost. I had to start thinking of them and how to get myself back to being Mum for them.”
TO DONATE
To donate to Caroline’s charity challenge, head to www.justgiving.com/ crowdfunding/ carolinerutley-frayne
GOALS
And she’s been setting herself goals ever since. First, it was to get back on her feet and walking. Next, she wanted to get behind the wheel of a car and driving, which she achieved within a year. “My next goal was to get back to what I perceived as normal, what was my normality,” explains Caroline, who’s from Devon. “That’s never going to happen, but I’m really determined to get as close
to that as possible. That’s why I ended up going to Dorset Orthopaedic – you can get better legs there than you can through the NHS.” And so began Caroline’s journey with life-enhancing prosthetics for her leg. She used Ottobock’s C-leg first of all, and then moved onto the Genium, a groundbreaking knee prosthetic which enables climbing stairs step-over-step, the ability to walk backwards, standing on slopes and much more.
TAKE THE PLUNGE
In 2015, she met two men at a conference who had had osseointegration surgery. This is when a metal rod is inserted into the bone, and an artificial limb can be easily attached to the implant with a connector. Based on their positive experiences, Caroline decided to take the plunge and travelled to Australia for the life changing operation. “I used to plan my day around my leg,” she explains. “In and out of vehicles. Where can I sit? Will that be comfortable?
I don’t need to do that now. I can think about my life. That’s a huge difference.” To complement her rehabilitation, Caroline, who’s still using the Genium, has been setting herself some physical targets. Last year, six months after her surgery, she did a 10k walk in less than two hours. This year, she’s going to be walking round the South West coastal path to raise money for two charities which are close to her heart – Force Cancer Charity and SelfharmUK. The path is 630 miles long, so she’ll be tackling it throughout 2017, aiming for 25 miles a week. “It’s good for the soul as well as for my rehab, just to feel like you’re giving back,” she says. “Having the goal to make money for the charity, and having put that in the public eye, it pushes you.”
FIND OUT MORE To find out more about Ottobock’s pioneering prosthetics, head to www.ottobock.co.uk
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