ISSUE 5 2020 • www.novadisability.co.uk
D I S A B I L I T Y
DISABILITY AND ME Finding help and support as you adapt 001_Nova_20_cover FINAL.indd 1
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Osprey Group
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WELCOME
Hello, and welcome to the 2020 issue of NOVA Disability!
PUBLISHER Denise Connelly denise@dcpublishing.co.uk EDITOR Lorne Gillies lorne.gillies@dcpublishing.co.uk STAFF WRITERS Emma Storr emma.storr@dcpublishing.co.uk Saskia Harper saskia.harper@dcpublishing.co.uk DESIGN AND PRODUCTION Lucy Baillie lucy.baillie@dcpublishing.co.uk SALES Danny McGonigle danny.mcgonigle@dcpublishing.co.uk ENABLE MAGAZINE www.enablemagazine.co.uk
DC Publishing Ltd, 198 Bath Street, Glasgow, G2 4HG Tel: 0844 249 9007
Adapting to disability is a learning curve: you’re learning how to work with your body or coming to terms with a diagnosis and your loved ones, who want to provide all the support they can, are coming to terms with a change in relationship or caring status. It’s challenging; thankfully there is a wealth of support on hand. On page 6 we interview Paul, who experienced extreme isolation after becoming a double above the knee amputee. After a charity came forward to lend a helping hand, Paul revelled in the benefits of speaking to others, he says: “It was amazing to see the difference of being around people who are in a similar position to you, and not feeling so alone anymore.” This is the theme of this issue: working together to regain your sense of self. Of the 13.9 million people in the UK living with a disability, only 17 per cent were born disabled, and we’re here to help you adapt to your new needs. Page 9 looks at home adaptations to make your home work for you; discover the funding and benefits you’re entitled to (and how to apply) on page 17; before finding mental health support on page 25 for advice if you experience difficult, dark times – it’s a normal part of the healing process. For more information on all things from disability, caring to getting back to work, subscribe to our sister title Enable Magazine (www.enablemagazine.co.uk/subscribe) – the UK’s leading disability and lifestyle title. Don’t miss out on the latest disability news, Until then, I hope you find this issue helpful. interviews, advice and rehabilitation support by following @EnableMagazine Lorne Gillies, Editor
EDITOR’S PICKS 6 THE NEW NORMAL
Amputations to receiving a diagnosis of IBD, there’s a lot to learn: but there is help out there. Two people share how they found their ‘new normal’.
14 UNCONDITIONAL LOVE ©DC Publishing Ltd 2020. 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.
All parents want the best for their child, and disability isn’t a barrier to an exciting, fulfilling future. A parent shares her tips on adapting to disability or diagnosis.
28 EMPOWERING RELATIONSHIPS
Your circumstances may have changed, but you’re still the same person. A counsellor shares how you can maintain your sense of self and relationships.
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CONTENTS
What’s INSIDE LIFESTYLE
6 THE NEW NORMAL
When it comes to adapting to disability, guidance and people in similar situations to you are just around the corner. Together, you can work to find your ‘new normal’.
9 COMING HOME
Make your home meet your needs with affordable adaptations to home renovations: we’ve got you covered.
28 EMPOWERING RELATIONSHIPS
A relationship counsellor shares why talking about your feelings will help you regain a sense of self.
CARE
14 UNCONDITIONAL LOVE
13
The future is bright for all children, even after disability or diagnosis. Take a look at the organisations helping your little one shine.
25 TIME TO TALK
When your mental health is impacted during recovery or rehabilitation, it can feel like there’s nowhere to turn – but there are organisations on hand to bring you out of the dark.
SUPPORT
30 TECH SAVVY
9
Discover just how new technology and Apps can help you regain a sense of independence.
WORK
22 THE RETURN TO EMPLOYMENT
Understand everything from reasonable adjustments to working in partnership with your employer as you head back to the grind.
FINANCE
17 FUNDING SIMPLIFIED
Don’t be left in the dark when it comes to money: our handy guide is sure to answer all your financial queries.
22
SPORT
13 READY, SET, GET ACTIVE
It’s a big year for disability sport, go beyond the Paralympics to see just how important sport can be for your physical and mental health.
PRODUCTS
20 PRODUCT ROUNDUP
6
Don’t miss the products on the market designed with access in mind.
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Here For You When You Need Us
It is almost impossible to open a newspaper without reading about a case of Medical Negligence on a daily basis and with more highly publicised cases being reported, along with the inevitable rise of claims as services are cut, it is vital that if you or someone you know have been affected by Medical Negligence you instruct a specialist firm to pursue a claim on your behalf. Sadly these incidents are not unfamiliar to the team of Medical Negligence lawyers at Wolferstans, however shocking they may seem, and they seem to be part of a general trend in reported increases in claims for compensation against a background of cuts being made to NHS budgets and services to patients. Despite reported high profile cases both nationally, and locally, many people think that such poor care doesn’t occur and that these cases are examples of scaremongering with Clinical Negligence lawyers often portrayed as ambulance chasers preying on an already financially crippled NHS. Whilst the majority of patients experience good care from the NHS, negligence does occur and it is only if you or someone you know have been affected by such negligence that you can truly appreciate the often devastating
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and crippling impact that an injury caused by Medical Negligence can cause to your life and the life of those you love. Our team of lawyers at Wolferstans have been investigating claims against doctors and NHS providers for in excess of 30 years and we know that often the true motivation behind our clients is the desire to achieve a truthful explanation of what went wrong with their care and the ability to carry on with their life without the financial burden accompanied by a permanent disability or loss of a loved one. Often clients who approach us are reluctant to pursue a claim against the NHS thinking it is morally unacceptable and there is a misunderstanding that any compensation comes directly from the hospital’s budget. This is not the case. Compensation in Clinical Negligence claims is provided to put our clients back in the position they would have been but for their injuries; it is not a way of punishing the Defendant.
If you would like to get in touch to have a free initial discussion-without any obligation- please contact Elizabeth Smith on 01752 292309 or email her at esmith@wolferstans.com.
Wolferstans deal with all types of claims valued from a few thousand pounds to multi-million pound claims for children and adults who have suffered severe brain injuries and the vast majority of our claims are settled without ever having to go to Court.
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LIFESTYLE Adapting to disability may present a variety of challenges and takes time as you come to terms with your new normal. However, there’s a plethora of support available to help you navigate your recovery, and beyond, too
The new
NORMAL R
ecovery is an ongoing process that takes time and dedication from yourself and your support system to manage successfully. During this time, you may experience changes to lifestyle, while also having to think of new ways to complete everyday tasks. Going through recovery it’s normal to be experiencing a range of emotions, which are also part of the process to adapting to an aquired disability or diagnosis. From shock and denial to anger and depression, it’s important to know that you’re not alone at this time. Adapting to disability is a huge change. But, no matter what your new circumstances are, charities and professional services across the UK are working hard to offer services to those living with a range of disabilities and conditions.
TROOPERS
Finding Your Feet (FYF) is just one charity providing support to amputees around the country. Founded in 2014 by Corinne (Cor) Hutton – the first person in Scotland to become a double hand transplant recipient – the charity supports an average of 200 amputees (known as Troopers) at their clubs and activities monthly. FYF provides free support: from physical activity clubs such as swimming, cycling, rock-climbing and gardening; to mental health counselling and peer support groups. No matter what you want to challenge yourself to do after your amputation, FYF will help you achieve your goal and help every step of the way. “I wouldn’t be surprised if people come out of surgery thinking they’ll never ride a bike or can never swim again,” explains Kerr Ferguson, marketing executive at FYF. “We’ll get you in that pool or up that climbing
Hannah’s life changed when she underwent emergency surgery to remove a section of her bowel; she’s now reaping the positive rewards
wall. No matter if you think it’s going to be hard.” With the right advice and adaptation, you can return to the activities you once enjoyed.
NETWORK
Paul Johnson was supported by the charity after having a double aboveknee amputation. He now works for FYF, supporting Troopers and delivering talks about his experience. “For the first couple of years after my accident, I sat in isolation in my house,” Paul remembers. “But Cor was constantly trying to convince me to go out for lunch with her and a friend, and eventually I said yes. I went out for lunch with her and it was amazing to see the difference of being around people who are in a similar position to you, and not feeling so alone anymore.” One of the most impactful parts of adapting to an amputation, especially in the initial aftermath, can be sharing experiences with others and
learning from their journey. Each incident is unique, and you try not to compare your circumstances with someone else’s, but being around other amputees and learning from them can have a positive impact on your own recovery. “I genuinely don’t know where I’d be without the charity,” enthuses Paul. “I’ve totally turned it around and am living my life again. It’s built my confidence up so much. “Don’t focus on the big goals, just focus on all the little things along the way and appreciate the milestones. That is probably the biggest thing I’ve taken away from my recovery.”
INVISIBLE
For those who have recently been diagnosed with an invisible condition, there can be different challenges to navigate. Hannah Archer was diagnosed with Crohn’s disease last year – a condition that causes inflammation of the
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LIFESTYLE
digestive system, which can lead to swelling, pain and an urgent need to use toilet facilities with a moments notice. As a result, Hannah had to have emergency surgery to remove a section of her bowel. “My world was turned upside down in the space of an hour,” Hannah says. “A phrase I always use is: it’s my ‘new normal’. It’s not what it used to be, but it’s the new normal and it’s all about coming to terms with that and understanding that you’re not alone.” Crohn’s is a life-long condition, which can require adaptations to lifestyle. Hannah now uses a stoma – an opening in the surface of the abdomen that diverts the contents of the bowel out of the body and into a bag. “No experience of Crohn’s is the same, everyone is affected in different ways,” explains Ruth Wakeman, director of information and support services at Crohn’s and Colitis UK. “For some people, it’s about adjusting their work arrangements, or managing their food and diet. It can really affect every aspect of life.”
SHARING
FYF’s Ampu-teas
Paul Johnson
“It was amazing to see the difference of being around people who are in a similar position to you” PICS: ©FINDING YOUR FEET
Though receiving a diagnosis can feel daunting, the support available to those living with the disease can have a hugely positive impact. Volunteers at Crohn’s and Colitis UK who have a personal understanding of the conditions deliver emotional support, and charity-run events provide the opportunity to share tips on how to adapt to the conditions. “If you’d said to me in August how positive I feel now [I wouldn’t have believed you], I just feel like a different person,” enthuses Hannah. “I want to live my life, I don’t want to just survive it. You only get one chance. If anything, even with how scary it was, what happened to me put everything into perspective.” There are a lot of questions to be asked after receiving a diagnosis or acquiring a disability, and there’s no doubt that you might encounter challenges, embarrassing moments, and have to adapt to your new circumstances. But, with help at hand, you can be sure you won’t be alone, and you’ll be supported every step of the way. Everyone adapts to disability in their own time and way, but you don’t have to do it alone.
Crohn’s And Colitis UK www.crohnsandcolitis.org.uk 0300 222 5700 Finding Your Feet www.findingyourfeet.net 0141 258 4868
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LIFESTYLE
COMING
HOME When coming home after an extended stay in the hospital, considering your living situation is essential to ensure your home meets your new needs. There is a plethora of adaptations, both big and small, that can be made to make your home accessible in style
I
f your disability will affect the way you live your everyday life, your mobility, or is a sensory disability, you might have to consider if your current home is still the right fit for you.
DECISION
After acquiring a disability, changes to your living situation can be big or small, but they are crucial to successfully carrying out everyday tasks. Once you know the actions that your new diagnosis will change, think about whether your current home is suitable for you. You might have to consider moving home altogether, but this can usually be avoided by adapting where you live now. When deciding that moving home is the best option, it’s important to ensure you have as much information as possible before making the final move. From specially adapted housing to sheltered accommodation, there is a
see if they have any information that host of options available that allow you to receive additional help and could be helpful. be comfortable in your own A home assessment is environment, while living carried out to find out what help and support your life to the fullest. Adaptations you need, including Different adaptations don’t have to mean equipment and could make your current home suitable for you changing the whole adaptations at home. to continue living there. What adaptations would aesthetic of your help you at home are You could make large normally looked into adaptations like installing home during the assessment. An ramps at doors, widening door frames and having occupational therapist will a stair lift installed, or small carry out the assessment, going around your home with you and asking adaptations like adding grab rails or you to identify problem areas. extra lighting around your home. Organisations including Age UK ASSESSMENT (www.ageuk.org.uk), Scope (www. Once you know you are being scope.org.uk) and Shelter (www.shelter. org.uk) provide information about discharged from the hospital ask your home adaptations, your rights and doctor or occupational therapist if they what your council is responsible for. can recommend what adaptations you might need at home. If you have Citizen’s Advice (www.citizensadvice. already been discharged you can call org.uk) can also offer impartial advice on asking for adjustments to help with the specialist or consultant working with you to manage your condition to your disability and getting adaptations.
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LIFESTYLE
EASY CHANGES
Adaptations don’t have to mean changing the whole aesthetic of your home: small adaptations can be just as transformative while temporary and more affordable. They can also be easier to implement on a short timescale, especially if you are able to self-fund instead of waiting for approval from your local council. If you have carers, healthcare staff or family visiting you frequently, but it is difficult for you to get to the door, a key lock box (available from SETON, for £29.99, www.seton.co.uk) could make this easier. These small safes are completely secure and allow you to leave a key in a box that can only be opened using a unique pin code. An automatic light outside of your front door can also help if you have trouble seeing in dim light or inserting keys into your door. Inside, suction grab rails can be used throughout the home, but are especially helpful in the bathroom. These rails are moveable and won’t leave marks on your walls. They can also be attached to a door to make them easier to open if it is difficult to grasp traditional handles. Bathroom adaptations can become expensive if it’s needed on an interim measure. WashPod (www. dignityaccess.co.uk) is a mobile, fully accessible washing facility ideal if your circumstances change suddenly and require adaptations without too much home disruption. The professional and experienced team at WashPod know how important it is to return home after a prolonged hospital stay; offering cost-effective, temporary, accessible bathroom facilities, this will be one less room to worry about. In the kitchen, adapted cutlery can be utilised to make it easier to hold knives, forks and spoons while you eat. Make sure to visit The Ability Superstore (www.abilitysuperstore. com) for all your kitchen needs.
If you have already had a home assessment, the amount your local council will cover for adaptations should have been explained to you. This is usually £1,000 per adaptation in England and £1,500 in Scotland, but can differ depending on your local authority. A Home Improvement Agency (HIA) in your area can advise if you should stay in your current home, plan any large adaptations, and check what financial help you might be eligible for. You can find your closest HIA at
www.findmyhia.org.uk If you need to make large adaptations to your home you could be eligible for a Disabled Facilities Grant (DFG) to cover the costs. This includes adaptations like widening doors, installing ramps and adapting heating controls to make them easier to use. The grant is available in England, Wales and Northern Ireland. Depending on your household income and savings, you could get upwards of £25,000 to cover the cost of adaptations.
IN THE MONEY
There is a range of ways to fund home adaptations whether they cost tens, hundreds or thousands of pounds. If you require adaptations to your home to make it liveable it shouldn’t be a financially stressful situation. Your local council should be your first port of call for financial support.
Ask Sara (asksara.dlf.org.uk) and Living Made Easy (www.livingmadeeasy.org.uk) provide independent advice on home adaptations and equipment.
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SPORT
READY, SET,
GET ACTIVE 2020 is gearing up to be another exciting year in the disability sporting calendar, with events taking place across the globe including the Tokyo Summer Paralympic Games in August. With more sports becoming accessible, how can you get involved?
R
egardless if you’re a loyal fan, or are new to the world of sport, this year is the perfect chance to try something different and become inspired to get active – not to mention it will advance your rehabilitation. You may think that having an aquired disability will make physical activities harder, but the sporting world is fast becoming the most inclusive.
DEVELOPING
There’s never been a better time to get into adaptive sport: with new technologies and equipment constantly developing, the opportunities to try something new are endless. Wheelchair rugby, visually impaired football (britishblindsport. org.uk) and hearing-impaired tennis (www.tennisfoundation.org.uk) are just a few examples of sports you can try with a disability. And, as disability sport remains at the forefront of sporting conversations, more local groups and clubs are incorporating adaptive opportunities into their ethos.
ADAPTATIONS
Sports are easily adjusted to take a variety of needs into account, such as the Two Bounce Rule in adaptive tennis, which dictates that the ball
can touch the ground twice before a benefits, which can aid rehabilitation player hits it back over the net. Or, in considerably. Reduced stress, depression visually impaired football, the ball makes and anxiety, improved sleep, happiness a noise, and the offside rule doesn’t exist. and overall wellbeing are just a few of 2020 is going to be a landmark year in the ways sport can benefit your mental sport, with events such as the Invictus health. Games (www.invictusgames2020. Joining an accessible gym or sports com) – for wounded, injured and club can connect you with people sick military personnel – and who’ve had similar experiences the Tokyo 2020 Paralympic to you, and might be going Head to our through recovery as well. Games (www.tokyo2020. website to see all the org) taking place. Feeling part of a team helps events taking place in But, you don’t have to with building relationships 2020’s year of disability aspire to be a Paralympian and ensures you have sport, www.enable something to look forward to enjoy getting active. magazine.co.uk These events highlight that to on a weekly basis. Pushing yourself out of your no matter your previous experience, sport is for everyone, comfort zone to try something and is not about winning medals, but different and meet new people can rather aiding recovery and discovering also contribute to a sense of improved potential. confidence and self-esteem: two qualities that help to promote a positive recovery. BENEFITS Grab your kit and head to the track, pool or gym this year, because 2020 is The benefits of getting active are the year to get active. numerous. Physically, sport improves lung function, cardiovascular health and muscle strength. It also lowers the risk of stroke, heart disease, high blood pressure and diabetes. Discover how you can get active and find the However, physical activity also right sport for you by visiting Activity Alliance, has a number of mental and social www.activityalliance.org.uk 13 NOVA ISSUE 5
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CARE
UNCONDITIONAL
LOVE
Becoming a parent is an exciting time filled with optimism for what the future holds, and how your child will flourish. However, when your child receives a diagnosis or acquires a disability, questions for the future will arise and it’s important to know: you’re not alone and the future is bright
W
elcoming your child into the world comes with overwhelming emotions. Learning that your child may have a disability, either during pregnancy or in their early years, can change those emotions from optimism to worry or concern and come with a host of questions. A challenging time, it can quickly become overwhelming knowing where to turn. For Stacey Byrne, it was during pregnancy her unborn son received a high chance screening result.
NEGATIVE
After receiving the results, Stacey initially had a negative experience. With responses of commiseration, an attitude of delivering bad news, and asking if Stacey would like a termination from some medical professionals: the process was a dark mark on what should be a positive, exciting time bringing a new life into the world. “All women know that they can have an abortion, because they want to, at any time before 24-weeks. Most Stacey and Evan
diagnoses are given before 24-weeks, so why is it that we have to specifically raise the issue? It makes it seem like that is the expected thing,” says Stacey. “It is discriminatory practice.” At the time, Stacey knew very little about Down’s syndrome, too. “All I knew was society’s negative perceptions,” she remembers. “But, I knew I needed to receive the full picture and, actually, I now feel quite ashamed about how ignorant I was towards people who happen to have Down’s syndrome.” For Stacey, the negativity and lack of information continued during her pregnancy, with some clinicians making Stacey think her decision could be wrong. “I wanted my baby, I knew my decision was right for me and my family – I was not wrong,” emphasises Stacey. Alongside negative perceptions and attitudes, Stacey felt the information or support provided could have been vastly improved on. “I felt that if termination was agreed all the support would be available to me, however, I chose to keep my baby and I left the hospital with nothing apart from sadness and confusion; that was a tough time,” Stacey adds. After leaving the hospital, Stacey did what parents do during this time: utilised Google and found groups for parents or guardians of a child living with Down’s syndrome. Despite the challenging aspects of Stacey’s pregnancy, welcoming Evan home was another positive addition to the family.
POSITIVE
“It was impossible to know what the future would hold for Evan, as it is any unborn or new baby. However, what I did know was that he would have love and support to achieve anything 14 NOVA ISSUE 5
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CARE
he wanted, no different to how I felt towards his siblings,” Stacey emphasises. “He would have our full support to achieve anything he desired, why wouldn’t he?” Watching your child grow, their personality will shine through as will their skills and achievements. During this time your expectations will change on what your child will accomplish after receiving diagnosis, but it is important to know that with the right support, love, and dedication that all parents will give their children the future is certainly bright. Stacey fervently advises: “Treat your baby with Down’s syndrome like any other baby.” Now, Stacey is working to ensure that all parents or guardians of children and young people living with Down’s syndrome know the positives of raising a child with a disability.
WOULDN’T CHANGE
Founder of charity Wouldn’t Change a Thing (#WCAT), Stacey is helping change negative perceptions of Down’s syndrome for new parents, families and people with Down’s syndrome. All members involved are parents or guardians of a child with Down’s syndrome, #WCAT is producing campaigns to raise awareness in a positive light to celebrate Down’s syndrome, disability and the opportunities that all children have in front of them. “We are all working for a society where everyone is accepted for who they are and equally valued,” remarkable. emphasises Stacey. Highlighting the “The future is bright and we’re truth about the lives of people excited to see opportunities with Down’s syndrome and doors open for Evan, and the people who whilst watching him care for them, #WCAT I wish more people grow.” is just one charity helping, as a parent, understood that ATTITUDES adapting to a child’s From Stacey, Evan, raising a child with diagnosis. and the family’s Down’s syndrome is Stacey continues: experiences, they “I wish more people have learned a lot very rewarding understood that about growing and raising a child with flourishing with Down’s Down’s syndrome is syndrome. If your child has very rewarding, as is raising been diagnosed or has acquired any son or daughter. Evan has his a disability, it is important to reach strengths and weaknesses, his ups out to the wider disabled community. and downs, he has a personality just Stacey encourages: “Be sure to like his dad and looks very much like seek a balanced view, reach out to me… Evan’s siblings have learned the community, open up to lived a great deal in return, their bond is experience, join the support groups
and hear other stories similar to yours; share your journey with us, let us share ours with you – you are not alone.” It can be a confusing time when coming to terms with the fact the life you may have envisioned during pregnancy or your child’s early years has taken a different route, there may even be a period of grieving. However, with continued awareness and more parents speaking about their positive experiences, attitudes and understanding of disability is sure to change for the better. Guidance and additional support is available from Contact (contact.org.uk), Scope (www.scope.org.uk, 0808 800 3333), and Wouldn’t Change a Thing (www.wouldntchangeathing.org).
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From hospital to home care Does a loved one want to return home? Do you need a care support package in place? Then our home carers are here to help... We’re here to help boost recovery, re-build confidence and give you or a loved one a better chance of living safely at home again. Find out how we can help on a short or long term basis. Arrange your FREE care assessment today. Call us on FREEphone:
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Visit: www.ip-live-in-care.co.uk
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FINANCE
FUNDING Simplified
Depending on your disability, living and financial situation there are different forms of financial support available to you. Learn about the financial help you might qualify for in our easy guide
A
longside benefits, there is a lot of financial support on hand to help with the cost of everyday life. You could be eligible for support for adaptations at work or at home, carers allowance for family members who now look after you and a host of other options.
Employment
Re-entering the world of work can be daunting, the idea of added financial strain for adaptions or reasonable adjustments shouldn’t make it more stressful and these costs aren’t your responsibility. If you are on a low salary you might be able to top this up with Income Support or Working Tax Credit. While your employer should provide reasonable adjustments to help you work, an Access to
Tax
The ways in which you are taxed for goods and services changes after acquiring a disability. If you have a vehicle that is registered in yours or your nominated driver’s name, you could claim for vehicle tax exemption or vehicle tax reduction. You can also benefit from VAT relief for vehicles that have been adapted to suit your condition. VAT relief extends past vehicles: this applies to products designed or adapted for your personal or domestic use, the installation of these products and repairs. Only certain types of products
Work grant can contribute to the cost of help getting to and from work, mental health support or communication support at a job interview, like a British Sign Language interpreter. If your disability affects how much you can work the Employment and Support Allowance (ESA) gives you money to help with living costs or support to get back into work if you are able to.
qualify including stair lifts, wheelchairs and adjustable beds. If your home has features that are essential to you living there you can apply for the Council Tax Disabled Band Reduction Scheme, reducing the amount of council tax you pay each month. You could also earn more before you start paying Income Tax under the Blind Person’s Allowance. If you are registered with your local council as blind or severely sight impaired you could earn an extra £2,450 per year before being taxed.
Everyday living
There is a host of support available to help you with the cost of everyday living after acquiring a disability. One of the most common benefits available is the Personal Independence Payment, often referred to as PIP. This tax-free benefit is for people of working age and can help to cover the extra costs caused by a long-term health condition or disability. When talking about PIP some people will also speak about the Disabled Living Allowance (DLA). PIP is gradually replacing DLA and which benefit you should apply for depends on your local council.
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FINANCE
Transport
Along with vehicle tax and VAT exemption for adapted vehicles, there are other forms of financial aids to help with the cost of transport. The Blue Badge Scheme allows you to park in disabled parking bays onstreet with parking meters for as long as you need to, and on single or double yellow lines for up to three hours, all for free. The badge itself comes with a small fee dependent on your local council, but allows you to park closer to your destination for less. A Blue Badge is specific to you, not the vehicle you use, so it can be used with any car as long as you are driving or travelling as a passenger. If you have no access to a vehicle but are able to utilise public transport, you can apply for a disabled person’s bus pass or railcard, or both. A disabled person’s bus pass entitles you to free travel on local buses and the disabled person’s railcard allows you and your travelling companion to save money on train fares in the UK. Similarly, having a disability that makes it hard for you to get around, the Motability Scheme could allow you to lease a vehicle for less. This includes cars, adapted vehicles, mobility scooters or powered wheelchairs.
Care
If your disability means that you need someone to help look after you, you could qualify for financial support to help cover this cost. Attendance Allowance helps with the cost of someone looking after you if you are state pension age or older and have a disability. This payment isn’t means tested so what you earn or how much you have in savings will not affect what you get. If you get help from social
services but you want to arrange your own care services, you can apply for direct payments. This allows you to choose and purchase the services you feel you need, as agreed with your local council. The person who cares for you could also be eligible for financial support. They could get £66.15 a week if they spend at least 35 hours caring for you weekly and you receive certain benefits. They don’t have to be related to or live with you to apply.
JARGON DECODED Entering the world of disability comes with a lot of jargon to be decoded. It’s time to get in the know.
DLA
Disabled Living Allowance
PIP
Personal Independence Payment
ESA
Employment Support Allowance
BSL
British Sign Language
DFG
Disabled Facilities Grant
Information on all funding and eligibility criteria can be found at www.gov.uk
Citizen’s Advice (www.citizensadvice.org.uk) and the Money Advice Service (www.moneyadviceservice.org.uk) both provide free, impartial advice and support about funding.
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BEAMBRIDGE MEDICAL LTD The Beambridge male & female funnel range improves urine direction for those whose flow is less effective. The funnel range has the added benefit of connecting to a drainage bag or leg bag and used as a urine collection device for people who can’t reach the toilet in time. All funnels are available on prescription. Further information on all the Beambridge Drainage systems to cater for male and female needs can be viewed on
www.beambridgemedical.com Tel 01483 571928 or email beambridge@ntlworld.com
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PRODUCTS
PRODUCT Roundup
There is a range of products available to help you when adapting to disability, here are our top picks HEALTH
MOBILITY
WEAREVER WASHABLES
THE FLYTA ACTIVE SHOWER CHAIR
Osprey, POA theospreygroup.co.uk, 01257 425623 The Flyta has been designed for active wheelchair users to replace the more classic, clinical looking shower chairs that are traditionally provided for disabled users. Each chair includes a full range of features to make it ideal for the active chair user as well as improving the overall experience.
HOME
OFFSET SHOWER
Bathing Solutions, POA www.bathingsolutions.co.uk, 0800 542 1526 The Esprit Offset Shower from Bathing Solutions combines both stylish design with a space-saving shape, ideal for smaller bathrooms. It boasts a low-level, slip-resistant tray, curved sliding doors made out of tempered safety glass, an integrated riser grab bar and thermostatic mixer control for safe showering. Fully-fitted for your convenience.
MOBILITY
MOBILITY
KEY TURNER (SET OF THREE)
Keywing, £9.95 exc VAT www.completecareshop.co.uk, 03330 160 000 Carefully designed for people with limited hand or finger strength, the key turner allows for simple, effortless access to keys and turning locks. The pack of three coloured turners can differentiate keys so no fumbling is expected, and tactile gripping is also featured.
iMEDicare, POA www.mypelvichealth.co.uk/en/, 019232 37795 Choose life, not leaks with the discrete, durable, and attractively priced, wearever washable (up to 250 washes) incontinence underwear, which lets you live life to the fullest. When purchasing, don’t miss out the First Pair Guarantee: Full Refund option on a three pack or order a six pack, with the seventh free.
THE GAMEFRAME KICK
Quest 88, starts at £355 exc VAT www.quest88.com, 01952 463050 Don’t miss out on the beautiful game thanks to The GameFrame Kick, developed by Quest. Enhancing the experience of football for children and young adults who use a walker or crutches for daily mobility, the strong, hardwearing GameFrame is wider than the average posture walker, enabling better ball control.
HEALTH
HAND HELD URINAL
Beambridge Medical, POA www.beambridgemedical.com, 01483 571928 Beambridge Medical Ltd supplies a range of hand-held urinals to suit the needs of both men and women. Particularly beneficial to those who have difficulty in reaching a toilet in time, the portable urination devices are discreet and practical. All products are available on NHS prescription or private purchase.
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NEW
A new generation of absorbing underwear for women with incontinence, bringing total confidence with no compromise on femininity.
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Available at id-direct.com and a wide selection of online retailers Call our freephone number for advice,orders and special promotions 0800 3896 185
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WORK
THE RETURN TO
EMPLOYMENT When the time comes to go back into full or parttime employment, there are a few areas to consider. From adjustments in the workplace, phased returns, or finding a new job: working together with your employer is an integral step to your transition
W
ork is an important part of our daily lives, it keeps us motivated, provides a sense of achievement and allows us to enjoy the holidays we’ve worked hard for. And you, an employee, are an essential member of the team and incredibly valuable to your employer. Going off work for a prolonged period of time due to receiving a diagnosis or accident and injury will raise several questions. Will I be able to work again? How will my employer react to significant time off? Reaching out to your employer is an integral first step to your return to work.
FIRST STEP
It is important to discuss with your employer if you will require any reasonable adjustments – this means making changes to the workplace, that are considered ‘reasonable’, to ensure people are not disadvantaged when completing their work or going for a job interview. “If a workplace puts an employee with a disability at a disadvantage, the employer should look to see what reasonable adjustments it can make and meet to discuss what can be done to help,” explains Julie Dennis, head of diversity and inclusion for Acas, the Advisory, Conciliation and Arbitration Service working with millions of employers and employees each year. For this reason, meeting with your employer to discuss how the business can best meet your needs is a positive step in the right direction. After all, your employer may be new to understanding disability and how they can assist, having an open conversation
“Speaking to your employer is the best way forward, and you will know firsthand what works and what doesn’t” can be incredibly beneficial. Julie adds: “Employees know firsthand what works and what doesn’t. By working together with your employer, both parties can make the most informed and helpful decisions; and this goes for all employees not just those experiencing difficult situations.”
PHASED
No matter if you have been off for several weeks, months or even a year, going back to work holds a lot of pressure. When discussing how your old job can be adapted, what you can still bring to the business, make sure to discuss the options of a phased return to work.
“Returning to work after a prolonged illness or acquired disability can be daunting,” emphasises Julie. “Speaking to your employer is the best way forward, and you will know firsthand what works and what doesn’t. For some, a phased return may be a good solution as it will give you the opportunity to ease back into work. “We recommend employers have regular catch ups with employees returning to work to ensure you can check employees are adapting to returning to work.” Jumping into the deep end or a gradual return to work: there is a route that will work best for both you and your employer. It’s important to know
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WORK
In the right lane Everyone deserves the right to be supported to do their job to the best of their abilities, and the law stands behind those rights. There is a wealth of support if you have a disability or health condition in the workplace. Being honest with your employer is important. Even if you are concerned about opening up, once your boss, line manager or member of HR is aware of your needs, an employer must make certain changes.
ACCESS
that you were a respected, valued member of the team prior to disability or diagnosis, and your employer is sure to welcome you back.
DISCRIMINATION
Unfortunately, there may be instances when the workplace may fall short on how to best accommodate your needs. But, in these cases you are not alone. “An employer failing to make reasonable adjustments for a disabled job applicant or employee is one of the most common types of disability discrimination,” says Julie. “[In this instance], initially you should try and discuss the issue with your employer, and then if there is no positive
response, speak to a HR advisor, trade unions representative or call Acas.” Don’t forget, under the Equality Act 2010 (www.gov.uk), it is illegal to be discriminated against because of gender, sexual orientation, race, age, religion and disability. This means your employer has to facilitate flexible working, provide technical aids and fair treatment for all employees. Before you know it, you’ll be getting back to the job you love – or even looking for new adventures, and starting a new career that you’ve always dreamed about – in an environment that supports your skillset, experience and what you can bring to the team.
Reasonable adjustments are in place to ensure you’re not disadvantaged when doing your job due to illness, disability, or mental health conditions. All workers are eligible for reasonable adjustments, even if you’re a trainee, apprentice or contract worker. From changing the recruitment process when going for a job, to making physical amendments to the workplace – like installing a ramp for wheelchair users – your employer is legally required to adhere to these changes. If you do find yourself in a situation where an employer cannot financially accommodate a request for adjustments, Access to Work funding is available. For those with a paid job or about to start one, Access to Work can provide help based on your needs. The grant can be used to pay for special equipment or support services such as assistance when answering phones, plus help getting to and from work.
Get expert and impartial advice on going back to work from ACAS (www.acas.org.uk) on 0300 123 1150. Looking for a change? Remploy (www.remploy.co.uk) is the leading disability employment specialist, to get you into work.
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CARE
Time to TALK W
e all have mental health, and looking after it is just as important as taking care of ourselves physically. Often, our physical and mental health are linked, and if we feel physically unwell, it can have an impact mentally, too. This is especially true after acquiring a disability, or receiving a life-changing diagnosis. At this time, you may be experiencing a lengthy rehabilitation process, while trying to come to terms with the new changes in your life. It’s perfectly normal to experience challenges with your mental health during this time: not only are you mourning the life you once had, you also might be thinking about your future, and how it may now look different to what you had previously imagined. Whenever you’re ready, help is on hand so you can understand your new needs, and navigate your emotions throughout recovery and beyond.
EMOTION
Donna Nahal began experiencing problems with her mental health after being diagnosed with multiple sclerosis (MS). “The first emotion I experienced was denial,” remembers Donna. “I didn’t want to face it and how it would affect my life. Suddenly my whole future was thrown into question and I didn’t know
One in four of us will experience issues with our mental health, and times of big change – such as acquiring a disability – can make this more pronounced. Though it can be hard, guidance is available to help you navigate and understand your feelings during this time how to deal with it. “I just felt really sad all of the time, but I wasn’t letting anyone know because I didn’t want to trouble the people I loved with my pain. I wanted to be a warrior, but I wasn’t dealing with my diagnosis.” A problem shared is a problem halved, and opening up about your mental health is the first step on the road to recovery. As Donna found, not only did expressing herself to her family and friends improve her mental health, it helped Donna’s loved ones understand how they could best be there for her. “When you start being more open, it’s like a weight is lifted,” enthuses Donna. “You can finally breathe again, you don’t feel so alone. It’s a process, and it might take time, but once you start to become honest, you get the right help that you need. “Sometimes, you can start to resent the people around you, even when they’re trying to help you, but they’re in the dark because you’re not sharing.
Gary Berry
“It’s very important to speak out. Bottling it up makes it worse”
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CARE
Once you start to [open up], they can give you the right support, and that’s beneficial for you, but also for them.”
LINKED
When receiving a diagnosis of certain conditions, such as Parkinson’s, there’s evidence to suggest that mental health issues are a direct side effect of the disease. Gary Berry had experienced panic attacks, anxiety and depression for years before receiving his diagnosis. “It was a shock to be diagnosed with Parkinson’s, but as strange as it sounds, it was almost a relief,” explains Gary. “I now knew that there was a reason for my mental health problems over the years.” Nearly half of all people with Parkinson’s have experienced anxiety or depression. According to Parkinson’s UK, the condition can be triggered by the stress of receiving a diagnosis, but also through the physical changes in the brain that are caused by the condition. “If I have a bad day physically, this has a knock-on effect and can impact my mental health as well,” Gary continues. “When I have a bad day, it’s hard to problem solve, and it affects my self-esteem and wellbeing. It’s very important to speak out. Bottling it up makes it worse. It’s okay not to feel okay and there’s always someone who’ll listen.”
SELF-CARE
Everyone has mental health, and there are things we can do to take care of it. Gentle exercise, getting
enough sleep and trying to stick to a routine can all contribute to a positive mindset during times of change. It’s also important to take time for yourself and continue to do the things you enjoy, to maintain a sense of purpose and self. Whether you’re an avid reader, a film fanatic, or want to try adaptive sport, returning to your hobbies and taking part in enjoyable activities will boost your endorphins and make you feel more like yourself. “Don’t give up the things you love,” Donna encourages. “I’ve always loved make-up, fashion and football, but I gave them up for a time after my diagnosis, because I thought it didn’t matter. It was only once I started going to football matches and doing my make-up again, I realised I could still do it, just in a different way. It’s all about adapting, and that’s a part of accepting where you are now. You’re still you, you’re just a new you.” Gary agrees: “The best thing is to focus on what you can do, not what you can’t. Try and achieve something each day, no matter how small, to lift your spirits.” Throughout your rehabilitation there will be ups and downs, and it’s important to know that you are not alone in your experiences. If you’re struggling to cope with your acquired disability or diagnosis, the most important thing to do is to reach out and ask for the help you deserve. Whenever you’re ready, support is available from friends, family, medical professionals and charities, to help you on the mental and physical road to recovery.
Donna Nahal
“Suddenly my whole future was thrown into question and I didn’t know how to deal with it”
MS Society www.mssociety.org.uk Parkinson’s UK www.parkinsons.org.uk Mind www.mind.org.uk Infoline: 0300 123 3393 Text: 86463
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LIFESTYLE
EMPOWERING RELATIONSHIPS
From romantic relationships to friendships, the people around you are key to living a happy and fulfilled life. When adapting to a new way of life and bringing disability into the picture, it is important to discuss how you’re feeling to know that you’re not alone
A
fter acquiring a disability, it can feel like you’ve lost a sense of self – but you’re still the same you. Even so, maintaining the different relationships in your life, forming new ones and continuing with activities you love can often be stressful. It doesn’t have to be: reaching out for support could help you to maintain the life you lived before your diagnosis or acquired disability. Philip Karahassan (www.therapyin. london) is a counsellor working with clients to help them live a better and more content life. Many of his clients are people who have recently acquired a disability, looking to reconnect with loved ones or themselves.
IDENTITY
When you are coming to terms with your new diagnosis or disability you might question how your life will change and what this means for who you are as a person. We all go through personality and behavioural changes, but acquiring a disability accelerates this process, Philip says: “People are changing all of the time behaviourally, every five years on average: if you think about it a disability will speed that up.” It might feel like this changes your identity, something which can be a struggle for family and close friends. “It changes the whole identity of not just the person with a disability but the other person in a relationship, and the whole family, too,” explains Philip. It is normal to feel this way after receiving a diagnosis, and it is normal for you and your loved ones to grieve, Philip stresses: “When you have a disability, or anything life changing happens, you might need to really reassess who you are – not just in terms of actions but the way you live in the world “Bereavement is only discussed if
someone is dying, but there are loads of different times when we feel bereft around some sense of self,” continues Philip. “It’s a bereavement of your own identity but from the point of view of family members it’s maybe a bereavement for them of the way they see you.” If left unaddressed it is common for these feelings to lead to the breakdown of relationships, by being open and seeking support in this often-difficult time, you can ensure you maintain the relationships that matter to you most.
EMPOWERMENT
Accepting your new diagnosis will also lead to a feeling of empowerment – your disability might mean changes in your everyday life, but it doesn’t mean you have to stop living life to the fullest. “Your identity is more than your disability, it’s just a part of your life – I’ve got blue eyes but I wouldn’t introduce myself by saying my name’s Philip and I’ve got blue eyes,” offers Philip. “Don’t allow it to become all you’re about.”
ACTION
Reaching out to those around you can help with maintaining these positive relationships along with preserving your sense of self. “You will be surprised with who comes, you might think you don’t want to burden people but actually, your friends are there and should be there through thick and thin,” reassures Philip. “Reach out, talk to people, don’t keep a secret, trust them with your new diagnosis. “The more people that you share [your diagnosis or disability] with the easier it gets; otherwise, you’re going around in circles – I can’t stress enough how important that is.” Philip often sees dramatic changes in clients both physically and mentally after they are encouraged to talk about their disability with friends and family. An open discussion about your disability, necessary life changes and concerns can help you to accept your change of circumstance and how to look forward to the future. Taking up a new hobby or activity is a great way to reconnect with yourself. There are a number of charities and organisations who provide adapted sports and activities with instructors specially trained to support you.
Reach out, talk to people, don’t keep a secret, trust them with your new diagnosis
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LIFESTYLE
Taking control of the situation by initiating a conversation about your disability, reaching out for support or seeing a counsellor to work through any negative feelings can all help embolden you, Philip says: “Get as much support as possible because it can feel really lonely; ask a doctor for support groups or counselling. “It will leave you more empowered, the whole thing is disempowering and you have to live with this, but start thinking ‘how can I still live my life?’” Your new disability doesn’t have to be a overall negative on your life, and your existing relationships can continue to flourish – as can you with a world of opportunities still available. Reaching out, being honest and sharing with loved ones: you can take back control.
The power of help After acquiring a disability having the right support around you is key to maintaining your everyday life. Along with your friends and family there are dedicated services available. If you think it could be beneficial to speak with a counsellor one to one or with your family, you can search for dedicated counsellors in your area using Counselling Directory (www.counselling-directory.org.uk). The Scope online community (community.scope.org.uk) is a disability forum where disabled people, their loved ones and carers can go to get advice and information, or to talk to people with similar experiences.
If your child or adult sibling is struggling to cope with your new diagnosis they can speak to Sibs (www.sibs.org.uk), the charity for brothers and sisters of disabled children and adults. Carers can also contact Carers UK (www.carersuk.org) or Carers Trust (www.carers.org) for advice on support on being a new carer. It is important to look after your mental health when learning about your new disability – reaching out is not a sign of weakness. If you are struggling with your mental health contact Mind (www.mind.org.uk) or call Samaritans for free on 116 123.
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SUPPORT
TECH SAVVY
Your phone is more than just a portal to social media and emails: your smartphone can be the key to your independence. We explore how you can use your phone to your advantage, throughout your recovery and beyond
F
rom built-in features to apps you can download, mobile phones can open up a variety of possibilities, making everyday life more accessible at just the touch of a button.
TECHNOLOGY
Advances in technology continue to make the world more accessible: even simple aspects such as Siri and Google Assistant mean you no longer have to fiddle around with typing and scrolling: simply talking to your phone now has the same outcome. Voice control, voice over – where your phone speaks aloud the text on screen – and enlarged text are just a few features of smartphones that are becoming increasingly available. Screen readers and voice over features are extremely useful for people who have a range of disabilities, particularly hearing or visual impairments. These characteristics of modern technology highlight the fact that accessibility is progressively becoming more ingrained into our culture and mainstream products. Accessibility features can be found in your phone’s settings. And, of course, what your smartphone isn’t already equipped with can be downloaded to your phone, through a variety of apps.
APPS
When it comes to apps, the sky’s the limit, with innovative new ideas being put into practice and downloaded every day. BE MY EYES www.bemyeyes.com This app connects users who are blind or visually impaired to volunteers around the world through live video chat. Visually impaired users video call a volunteer for more information about their surroundings, or a product, for example. The volunteer then describes what they see for the user. ROGERVOICE rogervoice.com/en/ RogerVoice enables D/deaf/HoH users to make phone calls in a stress-free way. When the person you phone through the app speaks, the voice is transformed into text on the screen. You can then reply by speaking, or can type your reply, which is then turned into speech. Phone calls can be made to others who have the app for free.
WHEELMAP wheelmap.org Wheelmap is perfect for finding places that are wheelchair accessible all around the world. Their helpful colour-coded key shows shops, restaurants, bars and other businesses that are fully accessible, partially accessible or not accessible at all. You can also use the app to find the nearest wheelchair accessible toilet. Why not contribute to the map and let others know which buildings in your area are accessible? DAILY COMPANION play.google.com Daily Companion is ideal for those caring for someone who has recently received a diagnosis, particularly of dementia or Alzheimer’s. It provides resources, advice and tips to build confidence, enabling users to provide the best care.
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Our unique services help fa m i l i e s i n t h e u k e v e ry d ay A n d w e c a n h e l p yo u t o o Nurse helpline our registered and experienced Nurses can deliver p r a c t i c a l a n d e m o t i o n a l H E L P T O fa m i l i e s c a r i n g f o r children with disabilities and terminal illnesses
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E M E R G E N CY E Q U I P M E N T S E R V I C E I m m e d i at e r e s p o n s e t o t h e u r g e n t n e e d s o f c h i l d r e n w h o d o n ’ t h av e t i m e t o wa i t
P l ay t h e r a p y p o d s A F R E E 1 2 w e e k l o a n o f s p e c i a l i s t t oy s s u p p o r t i n g physical, social and cognitive development
f o r m o r e i n f o r m at i o n a b o u t o u r s e r v i c e s C a l l 0 8 0 0 9 0 2 0 0 9 5 O R V i s i t n e w l i f e c h a r i t y.c o . u k Newlife the Charity for Disabled Children - Registered Charity Number: 1170125 in England & Wales.
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