Enable July / August 2019

A weekend break AN INSIGHT INTO PARENTING in sunny Dorset How can parenting differ when living with a disability?

The UK’s leading disability and lifestyle magazine

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LOCKED OUT

How will changing toilet signage help people with hidden disabilities?

THE 20-METRE SCRAP

An inside look at the campaign to scrap the PIP 20-metre rule

July / August 2019

IN YOUR HEAD

A journey through 70 years of mental health awareness

MEDIA MATTERS Get behind the camera with accessible schemes in the media

INDEPENDENT WOMAN Lucy Alexander and daughter Kitty discuss overcoming disability

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Welcome Summer has arrived, and so has the new issue of Enable!

The UK’s leading disability and lifestyle magazine

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EDITOR’S PICKS...

18 70 YEARS OF MENTAL HEALTH AWARENESS A lot has changed in terms of mental health understanding since 1949. We take a gander into the past to see just how much has changed.

26 FIGHTING TO SCRAP THE 20-METRE RULE An inside look at the campaign working to scrap the detrimental 20-metre rule in PIP assessments.

64 THE CRESCENDO OF CARE Music can play a powerful role in rehabilitation. One clinician shares her experiences of utilising music with children living with a brain injury.

ecoming a parent is one of the most spectacular (and terrifying) life experiences that can happen.

There is so much to consider, get your head around and prepare for. When you’re becoming a parent with a disability, the onus of care can be heightened, with questions being raised by yourself and others.

Behind closed doors we’re all ensuring our children achieve their potential. Over on page 13, one parent shares his family’s experiences of raising a sighted child whilst he, and his wife, are both registered blind. A key message: adaptations is essential. That is the consensus throughout this issue.

On page 10 we spoke with BBC presenter, Lucy Alexander and her daughter Kitty about their journey of adjusting to disability. After Kitty contracted a virus at the age of seven, leaving her paralysed from the waist down, the family worked to accommodate their new way of life; with Kitty fiercely holding onto her independence and dreaming of a future career in the media.

Working in the media is a creative hub where no one day is the same, and I’m pleased to see more organisations welcoming disabled journalists into their team. Are you an aspiring journalist? Make sure you head to page 74 to learn how you could work in the media with the plethora of initiatives on offer.

All this and much more lies ahead. Make sure to Get in touch let me know what you think of this issue! editor@enablemagazine.co.uk facebook.com/enablemagazine

Lorne Gillies, Editor

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©DC Publishing Ltd 2019. 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.

WIN

Head to page 51 for your chance to win a long weekend at Hill Lodge!

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What’s inside

13

July / August 2019

Interview

10 GETTING INDEPENDENT WITH KITTY AND LUCY ALEXANDER TV presenter Lucy Alexander and daughter Kitty discuss adapting their relationship after disability.

Voices

16 FIVE MINUTES WITH JUSTIN TOMLINSON We speak to the new Minister of State for Disabled People.

29 WHEELS OF PARENTING Parenting with a disability.

82 TACKLING SOCIAL ISOLATION WITH ELLIE SIMPSON Ellie shares how sport helped her tackle isolation.

Spotlight

26 FIGHTING TO SCRAP THE 20-METRE RULE A look at the campaign to alter PIP assessment rules.

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48 PUSHING FOR PROGRESS Disability is becoming more visible, but what else can be done?

66 ON CALL WITH AN ADMIRAL NURSE Providing care for carers, an Admiral Nurse reveals how she helps families in need.

Care

13 INSIGHT INTO PARENTING A visually impaired parent shares his experiences of parenting.

24 A HELPING HAND Understanding the process of hiring a personal assistant.

33 FOREVER HOME

Could you adopt a child and welcome them into your life?

There are children waiting for you.

64 THE CRESCENDO TO RECOVERY A clinician shares how music is vital during brain injury rehabilitation.

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64

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26

41 Life

21 HOME SWEET HOME How to make a house an accessible home.

34 LET’S TALK ABOUT VOICE BANKING Technology is giving people with MND their voice back.

36 THE DISABILITY PRICE TAG The cost of disability is rising, how is change happening?

41 HERE COMES THE SUN Enjoy the great outdoors this summer.

Health

Employment

30 THE SMEAR FACTOR We speak to one woman preparing for her first smear test.

73 IMPROVING INCLUSION WITH IPO IPO go the extra mile to ensure disabled employees can reach their goals.

18 70 YEARS OF MENTAL HEALTH AWARENESS Discover how awareness has changed over the years.

38 STAYING HEALTHY INSIDE AND OUT How to get healthy this summer.

71 ACCESS AT WORK One employee explains the benefits of working for an inclusive employer.

74 MEDIA MOGUL An inside look at accessible schemes for working in the media.

44 THE DIARY Dates not to be missed this summer season.

46 LOCKED OUT An inside look at the campaign to change accessible toilet signage.

53 AFTER I’M GONE Death is never a pleasant topic, but it’s essential to discuss.

Education

Motoring

59 PRODUCT ROUNDUP Top picks of adaptive products.

76 THE KEY TO FLEXIBLE LEARNING Is distance learning for you?

68 LEGO LEARNING Project lead for LEGO Braille Bricks, Stine Storm speaks to Enable.

78 THE TRANSITION TO HIGHER EDUCATION Preparing for higher education with a disability.

56 REVIEW: NISSAN LEAF Alisdair Suttie goes electric with his review of the Nissan Leaf.

55 MOTORING NEWS Before you get behind the wheel get updated on the latest news.

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News

Hidden disabilities now recognised for blue badge scheme NEW GUIDELINES FOR THE BLUE Badge scheme could see more people with hidden disabilities or conditions benefit from the parking permit.

People living with dementia, mental health conditions, or other hidden disabilities or illnesses, such as Crohn’s and colitis, can now apply for a Blue Badge. The badge allows users to park in designated disabled parking bays.

The Department for Transport (DfP) announced the move to allow more people to apply for a Blue Badge in mid-June. However, it will still be the discretion of local authorities who receives a Blue Badge.

Currently, 2.35 million people across

THE CHASE STAR REVEALS PARKINSON’S DIAGNOSIS PAUL SINHA, KNOWN PROFESSIONALLY as one of the professional quizzers on ITV’s The Chase, has revealed he has been diagnosed with Parkinson’s disease.

Taking to his social media, Mr Sinha expressed: “I have Parkinson’s disease. I will fight this with every breath I have.” The former GP was told he was living with the degenerative condition last month.

Parkinson’s disease results in shaking of particular parts of the body, slow movement and stiff muscles. There is presently no cure for the degenerative condition.

Concluding the news, Mr Sinha added: “A lot of people have asked ‘What can I do to help?’. The answer is to treat me exactly the same as before.”

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the UK use a Blue Badge to assist them when they are out in public areas.

Opening the scheme to those living with a hidden disability will increase the use of the Blue Badge and make general day-to-day tasks easier for people who are living with hidden conditions.

NEARLY 20,000 PEOPLE WIN APPEALS AGAINST PIP ASSESSMENTS IN UNDER THREE MONTHS, 16,337 people have won appeals against the Department of Work and Pensions (DWP) for errors to their Personal Independence Payments (PIP).

A record number of appeals have been won against current PIP assessments. A further 74 per cent of the 21,995 PIP cases currently going through a tribunal period have also won against the DWP. Earlier this year, the DWP admitted that too many cases were being overturned with officials now proactively requesting additional evidence earlier than before.

Read more about the campaign to alter PIP assessments on page 26.

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News Mental health resources provided for people with a learning disability SKILLS FOR CARE HAS announced new resources to ensure staff are trained to offer mental health support to people with a learning disability.

The strategic body for workforce development in adult social care launched the initiative during Learning Disability Week, which took place from 17 to 23 June.

The resources will include tips on discussing mental health with people with a learning disability, two posters about

anxiety and happiness, plus a wellbeing journal for additional support.

Skills for Care created the resources following five sessions with people living with learning disability and staff in partnership with CHANGE and the Judith Trust.

Sessions found people with learning disabilities can experience mental illness due to not healing or processing past negative experiences including, abuse, grief and trauma.

New multiple sclerosis research revealed THE MS SOCIETY HAS announced research from the Edinburgh Centre for MS Research has discovered that certain cells must die in order for the body to repair myelin.

Myelin is the protective coating over nerves, which helps messages travel quickly and smoothly between the brain and the rest of the body. As MS progresses the body attacks myelin believing it to be a foreign body.

Research has found that certain immune cells must die in order for the body to repair myelin – this finding could pave the way for vital new treatment for MS. Senior study author and MS Society Scientific Ambassador Dr Veronique Miron said: “Our research found myelin repair only occurs when immune cells called macrophages die. The death of these harmful cells stops inflammation and means new, helpful cells are created that support myelin repair instead.”

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Mencap study highlights growing issue of bullying of people with a learning disability THE LEARNING DISABILITY CHARITY, Mencap has revealed that one in three people with a learning disability fear being called names when leaving their home.

Feelings of worry and anxiety around acceptance or bullying have resulted in a growing number of people experiencing isolation and loneliness.

In a survey of 1,000 adults with a learning disability, Mencap learned that respondents are worried about: people calling out negative names or bullying; using public transport; and getting lost.

This continued fear is seeing more people with learning disabilities reluctant to leave their house. The charity has now announced inclusive sporting events or activities taking place UK wide to eradicate isolation.

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Getting Independent WITH KITTY AND LUCY ALEXANDER It was a seemingly normal day when TV presenter, Lucy Alexander dropped off her then seven-year-old daughter Kitty at school. Under an hour later, Kitty would be left paralysed

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aged seven, Kitty was like any other young girl her age: full of life with a passion for sport. Then one seemingly normal day, Kitty was taken to hospital after a virus began attacking her spinal cord, leading to permanent damage.

CHANGE

“It was all such a huge shock to start with,” remembers Lucy Alexander, who was working on the popular BBC show, Homes Under the Hammer at the time.

“But, we quickly realised it could have been so much worse.”

Spending time on a life support machine in intensive care at Evelina St Thomas Hospital, Kitty was diagnosed with transverse myelitis. The condition leads to inflammation of both sides of one section of the spinal cord, for Kitty she experienced the inflammation on her T10 vertebra causing paralysis from the waist down.

“As a mum I remember it would take my breath away seeing my sporty daughter wheeling towards me in a wheelchair. I was heartbroken for what I thought she’d lost,” continues Lucy.

For Kitty, being only seven, she explains the benefits of having experienced the illness so early on. “I just got on with it.

I think had I been older, it would have been so much harder. I learnt to adapt to my surroundings and challenges. It was hard but I had positivity around me, and I always tried to make the best of a bad situation and feel I’ve come out stronger as a person. I worked so hard with all my physios to practice wheelchair skills and transfers,” adds Kitty. “I wanted to live an independent life. And I am now doing that, to a degree.”

Kitty and the rest of the family

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interview

It’s important to me that people know I can look after myself

POSITIVE

Nearly ten years later, Kitty has been determined not to let anything hold her back; instead adapting and flourishing.

One way the family has worked together to overcome the challenges they faced was to continue life as normal.

At the time of Kitty being admitted to hospital, Lucy was still filming for the BBC. After Lucy’s husband, former English professional football player Stewart Castledine, encouraged Lucy to return to work, the positivity and dayto-day routine of life soon fell back into place.

“I needed normality, and also after being hospitalised, it was important for Kitty to see me happy with positive energy for her to feed off of,” enthuses Lucy. “My husband was utterly incredible. As any parent does: you don’t leave your child’s side when they are seriously ill.

“We had an amazing support network of family and friends – we still do.”

Continuing guidance from loved ones – although Kitty was placed on a new path – a sense of normalcy was paramount to her development.

PICS: © JENNIE SCOTT PHOTOGRAPHY

ACTIVE

Prior to the infection, Kitty was incredibly active – especially coming from such a sporty family. This passion for sport has not dwindled with acquiring a disability, in fact, it has seen Kitty make insurmountable achievements.

From playing wheelchair tennis, swimming 20 lengths each week, to performing as a lead character during the closing ceremony of the 2012 Paralympic Games, with Rihanna and Coldplay’s Chris Martin, no less. Sport has been an integral part in Kitty’s life and has accelerated her drive for independence.

Kitty

GAINED

Of Kitty’s journey, Lucy emphasises: “I have realised over the years how much Kitty’s gained, she’s utterly incredible and has showed us all how life is still just as good.

“I see people double take Kitty, they can’t believe her story and are in awe when they see and listen to her. It makes me so proud as a mother.”

Currently, Kitty is preparing to complete her A level examinations, and is filled with dreams of going to university or drama school. Not slowing down, Kitty has also received a prestigious acting scholarship with hopes of working in the media in the near future: Kitty’s dedicated to living her best, independent, life and won’t let anything hold her back.

“I now focus on other things,” she explains. “It’s been very hard as you can’t be, well, spontaneous. All my mates can just get up and go. I have to plan more which sometimes takes the fun out of being a teenager.

“However, I have brilliant friends, and it doesn’t affect me as much as it used to. Plus, I can drive now which is easier.”

INDEPENDENT

Living life with a disability can come with challenges, and Kitty has seen the difficulties of life in London with a disability.

From broken lifts and only stairs, a lack of disabled toilets, it can take longer to do simple daily tasks as a wheelchair user.

“However, Kitty maintains her fierce independence even during difficult times.

“We don’t always need help,” emphasises Kitty. “It’s important to me that people know I can look after myself. And, although I really appreciate the help, I don’t always need it.”

“People need to take Kitty’s views into consideration not mine,” agrees Lucy. “Kitty is still the same person – disabled or not.”

From dropping off Kitty at school, battling a virus, to adapting to disability: Kitty, Lucy, and the rest of the family have not let anything hold them back.

Lucy fervently advises: “Try to stay positive. Do your research and understand all aspects of the treatments available.

Have faith in the specialist doctors and staff that help you along your journey.

They made our experience such a positive one. I can never thank those people enough.”

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enable care

INSIGHT INTO

Parenting There are many moments in life where your world turns upside down, for good or bad. And becoming a parent is just one such moment. A whirlwind of emotions: hope, joy, aspiration; it is one of the most exciting times. Becoming a parent with a disability is no different

“H

e’s sighted, but it’s not his fault and we don’t hold it against him,” laughs Dave Williams, the father of ten-year-old Arlo. It is an anecdote Dave regularly uses during presentations at his job with the Royal National Institute of the Blind (RNIB) in reference to raising his sighted son as a blind parent.

Both Dave and his wife Emma live with genetic eye conditions, and were told that their child would, most likely, also experience sight loss.

But this was not the case for the family.

NEW ARRIVAL

“It was a surprise when we didn’t,” bemuses Dave on the arrival of his

son almost eleven years ago. “We felt well placed if we did have a blind child that the child would have a really good quality of life, and we would have high expectations of behaviour and education. When we had a sighted child, none of that changed – it’s just not what we initially expected.”

Regardless of ability, adjusting to being a first-time parent is a learning curve for all involved. Spending ten days in the hospital with doctors and nurses learning how to care for baby Arlo, both Dave and Emma were in a similar boat as all new parents – only with some additional adaptations.

Having spent time caring for her nephew, along with time spent working in a nursery, Emma was well prepared for her role as a mother. From feeding

down to changing a nappy.

“Emma was on hand to teach me how to change a nappy when you can’t see what you’re doing,” chuckles Dave.

“The key to that is preparation and being organised; make sure everything is within your arms reach and not within the baby’s arms reach.”

Together Dave and Emma worked to welcome their new arrival to the family, and adapted their parenting to fit their own needs and style. A reality that all new parents face. And utilising products has been an exceptional aid for the couple.

PRODUCTS

“We wanted to be able to read bedtime stories as we read braille, we used the ClearVision library,” enthuses

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CONNECTING

“Technology is enabling us to manage what content Arlo gets on the iPad,” explains Dave, who gets a notification on his phone when Arlo attempts to download Apps and games. “It’s not bullet proof and I’m sure he’ll find ways around it soon enough,” Dave chuckles.

“But, it is a starting point.”

Similarly, the family enjoy getting together over board games during family time. From playing chess to card games, accessible games have been

“

Very young children recognise disability without prejudice

“

Dave. The ClearVision library (www. clearvisionproject.org) is a postal lending library of children’s books suitable for visually impaired and sighted children. Using clear sheets with braille above the printed images of the book, instantly a book becomes accessible – meaning everyone can enjoy the story.

Dave continues: “It’s brilliant because the child can still see the pictures and the visual attractiveness of the book, but we’re also able to read the braille – we can then have that shared bedtime reading experience, which is really important when you’re trying to calm children down.”

Bringing accessible products into the home has been an integral part of the family’s development. As Arlo grows, the attraction towards using technology is ever present. But, Dave and Emma are on hand to check what their son is looking at, playing or connecting with online.

essential for Dave, Emma, and Arlo.

However, Dave emphasises that more is necessary.

“Sighted families do have thousands of games that they can choose from,” he says. “We do need more cooperation with the games industry to try and make games more inclusive, and played by players with different abilities. It’s good that we have some, but we can always do more.”

As a family, both Dave and Emma strive to ensure Arlo has a positive, fulfilling life. A feeling all parents can agree with. Being raised by parents with a disability may cause questions amongst the community, but ultimately, it makes children and young people more aware of the needs of others.

AWARE

“When Arlo was really small, he realised even before he could talk that pointing

at things wouldn’t illicit a response,” remembers Dave. “Because our son has blind parents, he had to talk. Before he could even speak he would take us to the item he wanted and put our hands over it. He realised really, really early on that we couldn’t see.

“Very young children recognise disability without prejudice, because they haven’t got preconceptions about it,” continues Dave. “Our son became quite articulate at a very early age and is very good at describing things – it’s something he does quite naturally and he volunteers the information. That is his normal. Arlo is very considerate about other people’s needs.”

There have been some hurdles that the family have experienced, but with communication and determination, Arlo is living in a loving and nurturing environment. With a passion for sci-fi, LEGO and playing with friends he is growing into a young independent man.

Dave and Emma have been excellent in figuring out the world of raising a child. From changing nappies, to pushing Arlo’s pram differently to accommodate a cane and guide dog, all the way to ensuring reading and gaming is something the entire family can enjoy: parenting with a disability might not be something we all experience, but we all know how to adapt.

Dave concludes: “You won’t be the first disabled parent, and you won’t be the last. And there are teams that can offer support.”

Guidance on sight loss and visual impairments is available from RNIB (www.rnib.org.uk).

Visit Best Beginnings (www.bestbeginnings.org.uk) for any familial advice.

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enable voices

FIVE MINUTES WITH

Justin Tomlinson Minister of State for Disabled People

On 4 April 2019, Justin Tomlinson replaced Sarah Newton as Minister of State for Disabled People. Lorne Gillies spoke to the new Minister to discover what his plans are for the lives and opportunities of disabled people

H

ow has serving as Parliamentary Under Secretary of State for Disabled People prepared you for this role?

I mean it when I say I was thrilled to be reappointed, because I’m genuinely passionate about breaking down the barriers disabled people can face in everyday life. When I was in this role previously I found that it’s really important to get out and about to see first-hand the impact of what we do here in Westminster for disabled people around the country.

How do you feel the UK Government can work to improve the experiences of disabled people living in the UK? One area I’m really keen to make progress in is how we listen to and then incorporate disabled people’s day-to-day experiences into policy development. This year we’re building a regional stakeholder network of nine groups across the country. Each group will consist of local disabled people and disabled people’s organisations, led by a chair who will regularly report their views directly back to me.

The groups will discuss the difficulties disabled people face in a range of areas. By drawing on lived experience our policy makers will be better placed to tackle the issues disabled people encounter.

In your opinion, what is the biggest issue the disabled community face?

The issue of hidden disability comes up time and time again. We’ve

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really moved forwards in challenging some of the negative perceptions of disability, but too often people think disability is only what we can see. There are so many people who are struggling simply because just by looking at them, you’d have no idea they have a disability – and these people are often overlooked or even receive abuse for using disabled facilities like toilets or parking spaces.

How can we work to eradicate this issue?

I want to mention Grace Warnock from East Lothian, who has Crohn’s disease and sadly faced criticism for using a disabled toilet because she didn’t look “disabled”. Driven by her own experiences, she created Grace’s Sign for disabled toilet doors, a campaign to raise awareness that not everybody who uses these facilities has a visible disability. I will do all I can to ensure her brave stand really does make a difference, not just in the UK but internationally.

Finally, what message do you have for the disabled community?

I want to build your trust in DWP. We’re spending more than ever before on disability benefits, we’ve seen disabled people more likely to be in work than unemployed for the first time, and we’re working closely with businesses to promote the Purple Pound and ensure disabled consumers have a better experience.

I will listen to and work with you so that we can get it right more often and build your trust. We are genuinely here to help.

I’m genuinely passionate about breaking down the barriers disabled people can face in everyday life

Follow the issues that matter to you most by visiting the Department of Work and Pensions at, www.gov.uk

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70 Mental years of

Returning to 1949, mental health understanding was limited; the stigma of mental illness was prevalent. As the Mental Health Foundation celebrates its seventieth birthday, what has changed?

1949

It was in January of 1949 which saw Dr Derek Richter proclaim his frustration at the lack of funding available for mental health research.

Enlisting the help of Ian Henderson – a connected stockbroker – Richter and Henderson introduced the first Mental Health Research Fund (MHRF).

Fundraising soon began, with the MHRF dedicated to bringing experts of different mental health practices together to build understanding of mental health.

ATTITUDES

Attitudes towards mental health started to shift in the late 1940s – from previous ideas that those experiencing mental illness were to be sent to a Victorian asylum.

After World War II mental health discussions started taking place.

1949

18

Health awareness 1972

1955

The Fund started awarding grants for research with one of the first initiatives supported investigating ‘patterns of response of the autonomic nervous system to psychological stresses and stimuli’ and ‘the genetics of the psychoses which arise late in life’. In terms of funding from public resources this was still challenging to come by in 1955 – the MHRF stepped in, ultimately developing the knowledge and skills of many future renowned professors.

1955

As the success of the MHRF increased – allocating a total of £87,000 in research grants in the 1970s alone – the organisation merged with the Mental Health Trust.

A year later the joint organisations re-branded to become the Mental Health Foundation (MHF). The charity followed the work already being done by Mind, launched in 1946. The turning point in mental health awareness was made.

ATTITUDES

From 1955 to 1970 there was a gradual trend to diminish stigma.

The use of asylums started to reduce with treatment being transferred to psychiatric hospitals. During this time the media also began to report mental health in a positive manner, with mental health patients also commenting on their experience of mental health care and support.

1972

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enable health

1980s

As change began, the 1980s would see increased research and evidencebased findings on the connection between mental and physical health.

From understanding early childhood autism, eating disorders to suicidal tendencies the importance of research into the debilitating effects of mental illness was a driving force for how we see mental health today.

ATTITUDES

Stigma was still present towards mental illness in the 1980s – even dementia was formerly recognised as a ‘mental handicap’, but it was a far cry from opinions viewed a mere forty years earlier. Literature published for the MHF’s fortieth anniversary stated: “Forty years ago, mental illness was synonymous with madness... And people referred to sufferers as lunatics, idiots and defectives... The last decade has seen the growth of public awareness...

It is no longer acceptable or indeed possible to consign the mentally ill for long periods in isolation in institutions.”

One study found 54% of adults with a learning disability have a mental health condition

1980s

PRESENT DAY

1990s

As research and investigations continued, a focus was introduced to learn more about mental health in wider society. From mental health in the workplace to mental health of children and young people. It was a decade of insurmountable shifts, with the Foundation for People with Learning Disabilities introduced to support mental health in the learning disabled community.

Prior to the Foundation for People with Learning Disabilities being introduced, people with learning disabilities were historically placed in institutionalised care – with known neglect. Links between learning disability behaviour and mental health began to present themselves, allowing for improved levels of care for all parties.

ATTITUDES

Mental health was finally recognised for the important health condition it is. Figures revealed that one in four people experience mental illness annually. Even so, the media played a worrying part in changing attitudes calling people with mental illness dangerous and using inappropriate language. However, as more people began to speak out about their own experiences, we come into mental health understanding today.

1990s

Mental health is a topic continually being discussed. From the Royal Family launching their Heads Together campaign in 2018, with the Princes’ discussing the mental trauma of their mother’s passing, to household names revealing life with anxiety, depression, and bipolar disorder – which actor, comedian and writer, Stephen Fry fervently converses – the research and discussion of mental health has reached a crescendo. And there seems to be no stopping further research.

ATTITUDES

Awareness has certainly changed since 1949. From positive language, communication, improved medical and professional understanding of mental health crisis – mental health awareness is at the forefront of everyone’s minds.

Unfortunately, we have lost many prominent members in society – and in our own communities – due to mental health conditions and suicide.

Through the darkness more people know that: “It’s OK, not to be OK.” A change in attitudes and reduced stigma is a welcome relief, with further research and awareness the future looks bright for mental health.

FOR MORE INFORMATION

Mental illness support and guidance is available from the Mental Health Foundation (www.mentalhealth.org.uk), Mind (www.mind.org.uk), or call the Samaritans (www.samaritans.org) on 116 123.

PRESENT DAY

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28/06/2019 15:19

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020_EN_JA19_ADV.indd 20

01/07/2019 14:40

enable life

HOME SWEET HOME Giving a new property your own stamp is how you turn a house into a home. Adapting your new home to meet your needs may seem like a mammoth task, but it’s easier than you think

C

oming home will always illicit feelings of joy, safety and comfort – that’s why it’s so key to ensure your home meets all your needs. Often, houses are not built with accessibility in mind, therefore it can be necessary to make adaptations, to ensure your home functions in the right way for you.

LIVING ROOM The living room is where you relax and unwind after a long day. It’s essential, therefore, that the furniture enables you to do so without any barriers to your comfort.

Raising blocks are available to heighten seats and make sitting down and standing up easier. Uplifting seat cushions are also a great alternative to buying a brand-new reclining

chair: springs within the cushion assist with standing in a controlled and dignified way.

It’s also possible to buy adapted remote controls with larger buttons, which are ideal for people who have visual impairments or memory loss.

Coffee tables on wheels, larger on/off buttons for lamps, and footstools are just a few of the adapted products that will ensure your living room is the space of comfort that it should be. enablemagazine.co.uk

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enable life

KITCHEN When adapting your kitchen, it’s important to think about how it functions, and how you use it. For example, do you spend a lot of time in the kitchen? Will it be a space for only cooking, or for entertaining and socialising, too?

Regardless of time spent in the kitchen, you need to be able to access everything easily: this could mean lowering the heights of counters, sinks and worktops, increasing the number of floor-level cupboards, and changing the handles on doors, for better grip.

IKEA recently announced the launch of its new OMTÄNKSAM range, designed with disabled people in mind, to be functional, but also improve home comforts. The line will include seat cushions, non-slip mats and jar grips, amongst other products that are yet to be announced.

Coming to stores in 2020, the IKEA line promises to improve the functionality of the kitchen space for a range of needs.

BATHROOM When you move into a new property, the bathroom may well be the room that requires the most work. Thankfully, there are a range of different options to ensure your needs are catered for.

Step-free baths allow users to walk

straight in and out, reducing the risk of slipping. Portable seats can be purchased for sitting in the bath or shower, as well as railings for those who would like the support to stand.

Other products such as raised or padded toilet seats, toilet support rails, bath hoists, non-slip mats and steps can adapt the bathroom in a budget-friendly way.

BEDROOM The average person spends around a third of their life sleeping, thus it’s vital that your bedroom is suitable for your needs and provides maximum comfort.

To make getting into and out of bed as easy as possible, mattress elevators can be purchased and adjusted for use in your existing bed and mattress, meaning you don’t have to purchase a completely brand-new set.

Other products including bed grab rails, bed raisers, hoists, overbed tables and heel protectors are available to ensure your bedroom is the relaxing retreat you deserve and you get a good night’s sleep.

For more product options for the bedroom, visit www.adjustamatic.co.uk

SUPPORTED LIVING Supported living is a middle ground for those who don’t want to live in residential care, but would like some additional assistance at home.

This can look different for each individual, ranging from being supported to live in your own home, to moving in with people who have similar needs to yourself. It is unlike residential care in the sense you have control over who you live with, where you live and the level of support you receive.

Supported living can be a great way to maintain independent living and improve social opportunities, receiving the support needed to do so.

Charities such as Mencap (www.mencap.org.uk) or organisations including Sanctuary Supported Living (www.sanctuary-supported-living. co.uk) can provide advice on whether supported living is a good option for you or your family member.

FUNDING

If you’re concerned about funding for adaptations, don’t worry, because there are different options to ensure you can afford the changes you need to make your home more accessible.

The Disabled Facilities Grant is available for home adaptations, and won’t impact any benefits you already receive. The grant is distributed to make changes such as widening doors, fitting stairlifts, adapting levels of surfaces and installing downstairs bathrooms.

The amount you can receive depends on your household income and savings, and where you live in the UK: in England you could be eligible for a grant of £30,000; in Wales, £36,000.

You can apply for the grant if you own the property, or are a tenant and intend to live in the home for the duration of the grant period. You can also apply if you’re a landlord who has a disabled tenant. It’s important to wait to start the works until your application has been approved, otherwise you might be unsuccessful.

Apply for the grant through your local council, who may send an occupational therapist round to assess your needs and the adaptations necessary.

For adaptations visit Mobility Solutions (www.mobilitysolutions.co.uk), Age UK (www.ageuk.org.uk), and the NHS (www.nhs.uk) 22 enablemagazine.co.uk

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27/06/2019 11:48

THE CARE SECTOR

THE ULTIMATE SOLUTION TO BATHROOM INDEPENDENCE

nable

u

rit-aq

gebe

k /e n.co.u aclea

SECTOR EXPERTISE AND FIT-FOR-PURPOSE PRODUCTS Bathroom adaptations play a vital role in helping people of all ages with a long-term limiting illness or disability to remain in their own home. And Geberit continues to lead the way with new products and technologies to support bathroom independence.

Showcasing the best of innovation for the sector, Geberit offers the AquaClean Mera Care shower toilet, billed as the ultimate solution to independence in the bathroom.

WHY CHOOSE GEBERIT? With Geberit, everything is designed with comfort and convenience in mind.

Combining specialist sector experience with the products and solutions needed to meet individual requirements, we offer an allround piping and sanitary solution for bathrooms, washrooms and personal care facilities.

THE AQUACLEAN MERA CARE

With a unique knowledge and understanding of the care sector, our development team has been working on the Geberit AquaClean Mera Care design for several years. That’s why we’re confident in offering a five-year warranty.

Adaptable yet stylish and with a five-year warranty for complete peace of mind, the AquaClean Mera Care offers a host of simple, intuitive features: • Pleasant water spray to guarantee pure cleanliness • Massage spray • Odour extraction technology • Warm-air dryer • Individual settings for a personal well-being programme • User identification and energy-saving function • Total control via push button control panel, remote control or opto-remote • Adjustable height set at installation • Touch-free operation of washing and drying sequence • Compatible with other equipment including shower chairs • Easy cleaning and maintenance WANT TO KNOW MORE? Visit www.geberit-aquaclean.co.uk/enable or call 0800 032 9629 for more information.

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26/06/2019 16:52

enable care

A helping hand Personal Assistants (PAs) play a vital role in society, enabling people to live as independently as possible. If you’re thinking about hiring a PA, it can be difficult to know where to begin the process, but there is support out there to help you make the most informed choices

S

kills for Care is a charity that helps people navigate through their journey to hire a PA with their online toolkit, and signposts local organisations that provide different support services – skilled and valued adult social care workforce are at the heart of their service.

SUPPORT

A PA can provide a plethora of support dependent on individual needs. Typical tasks can range from cooking and personal care, to driving and helping on holiday. The work a PA gives is invaluable – as Jenny Steeples knows.

Jenny began the process of hiring a PA for her daughter, Claire, 12 years ago, after Claire left residential care.

“We decided that Claire needed something much more personalised,” Jenny explains. “Becoming an employer – and learning how to be a good employer

You never know: hiring a PA could change your life

– can be difficult. It’s been hard work, but it’s well-worth it when you see Claire and all she’s achieved.”

RECOGNITION

Jenny and Claire first got involved with Skills for Care at the start of their hiring process, when they were looking for recruitment support. Since, Claire has gone on to win Skills for Care’s ‘Best individual who employs their own care and support’ award.

“It was great for our personal assistants’ morale, their networking, and to make them really feel valued,” Jenny enthuses.

“We felt excited, honoured, and it was a real achievement for Claire. We’d like to try and use winning this award to encourage other people to become PAs and raise the profile of the job. We need skilled, enthusiastic people to take on this role.”

Since Claire began employing PAs, the scope of activities she’s been able to partake in has increased dramatically.

that she goes to. Claire used to go to college, and she goes to all sorts of clubs and events, such as sailing. You have to be adaptable and willing to do anything.”

The perfect PA will be someone that is person-centred, compassionate and flexible. Even better if you get on well together and can discover any common interests.

“We need more PAs to raise the profile and promote this very valuable job that can get people out in the community and out of these long-stay hospitals,” Jenny urges. “You never know: hiring a PA could change your life.”

For more information visit Skills for Care at, www.skillsforcare.org.uk, www.employingpersonalassistants.co.uk

COMMUNITY

“Claire’s PAs get her out and about in the community again,” continues Jenny. “They accompany her to events and activities that she’ll enjoy, as well as cooking, and sitting down to watch TV shows.

“They go on holiday: she’s been on cruises and we’ve got a holiday house

Claire and her team

24 enablemagazine.co.uk

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25/06/2019 12:08

We were formed in 1944 to care for the soldiers and families of those who fought in the Second World War. 75 years on, our purpose has not changed: we exist to ensure that all soldiers, veterans and their families are afforded the independence and dignity they deserve.

To find out more, visit www.soldierscharity.org Help us be here for their tomorrow.

Contact us for information on how you can apply for help, find out more, or get involved in one of our fundraising challenges: Tel: 020 7901 8900 Email: info@soldierscharity.org ABF The Soldiers’ Charity is a registered charity in England and Wales (1146420) and Scotland (039189) Registered Office: Mountbarrow House 12 Elizabeth Street London SW1W 9RB

Left to right: Brenda Hale, John Tyson, Mark Smith

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28/06/2019 11:39

FIGHTING TO SCRAP THE

20-metre rule Last issue we shone a light on the growing mistrust in Personal Independence Payment.

With understanding limited amongst assessors, the 20-metre rule faces increased disconcert. We investigate the campaign to scrap the 20-metre rule

T

he move to change Disabled Living Allowance (DLA) with Personal Independence Payment (PIP) in 2013 was met with concern. It was a change promoted to save money by the government, but it has failed.

As PIP replaced DLA so did its criteria and assessment process. From consultation to implementation the new formula was seen as worrisome from charities, welfare groups and the disabled community.

CHANGE

The MS Society opposed the new assessment criteria, highlighting the 20-metre rule as one of the main issues. During the assessment process applicants are asked if they are able to walk 20-metres, roughly the length of two buses. The measurement is less than half of the marker for the previous DLA assessment, 50-metres.

Head of policy at the MS Society, Phillip Anderson, says: “We told the government in the consultation process that the 20-metre rule would be disastrous.”

The effect of the rule was felt instantly by applicants. Both Emma,

26 enablemagazine.co.uk

who has multiple sclerosis (MS), and Sajid, who has Parkinson’s, received a lower rate of PIP than they would have received on DLA. Despite meeting assessors in person, neither Emma or Sajid were given the opportunity to demonstrate how far they could walk. “Having someone guesstimate how far you can walk without actually measuring the distance was very frustrating,” explains Emma.

When Sajid went for his assessment he was unaware of the new rule or how it would affect him. “Without thinking I said I suspected I could walk the length of two buses, but not more than that,” remembers Sajid. “I got a letter saying that they were withdrawing my

disability allowance because I can walk more than two buses.”

Overwhelmed by the negative effect of the rule, the MS Society started a campaign to scrap the PIP 20-metre rule.

UNFAIR

More than a year after the campaign began, the rule is still in place, causing hardship for people who rely on the benefit to help with the cost of travel, treatments, and daily living.

“It has no relation to the amount of support people need to live independent lives,” stresses Phillip.

“There are people who can walk 21-metres who need support just

enable

spotlight

reconsideration Sajid was awarded the higher rate of PIP and given his Motability car back, he says: “At that time, it was very difficult but now it’s getting better because I have my car back.”

The pressure on Sajid’s family is not an isolated incident. After having a major relapse last year, Emma wasn’t able to afford things to help her live independently, she remembers: “I had to borrow money from my mum that she had put aside to pay for her funeral in order to buy a mobility scooter.

“Because I didn’t get what I thought I was due I couldn’t save the money to buy the scooter myself.”

We told the government…that the 20-metre rule would be disastrous

PROGRESS

as much as people who can walk 19-metres.”

Emma believes that assessors don’t have enough understanding of different conditions. This is of particular concern with fluctuating conditions like MS, she continues: “With MS you can have a better day then a really bad day, on a good day you might be able to walk 20 metres, but you definitely can’t on a bad day.”

The unfairness of the rule stretches further than the assessment itself.

Being awarded a lower rate of PIP can have detrimental effects on both mental and physical health.

“People are losing support and dealing with worse isolation and a

lesser quality of life overall,” explains Phillip. “People are trapped in their homes.”

ISOLATION

Before PIP came into place Sajid was receiving a higher rate of DLA and had a Motability car, this was taken away after his PIP assessment.

Without an adaptive car Sajid was unable to leave the house alone and had to rely on his daughter for support.

“I would have to ask her to take me out, she’s a young lady at just 24-yearsold and has a four-year-old son,” remembers Sajid “She’s a blessing in disguise for us.”

After applying for mandatory

Since the campaign to scrap the 20-metre rule was launched the support has been overwhelming, but there is still a need for change.

“Unfortunately, we don’t often see change like this happen all at once,” admits Phillip. “We’re closer than we have been before.”

Until the 20-metre rule is changed or removed the assessment process is not fair or suitable, Sajid says: “It should go back to the 50-metre mark because that is more realistic, if they can’t get it to 50-metres then it should be scrapped.”

Like Sajid, the MS Society believes reverting back to a 50-metre rule is a step in the right direction, but would like to see a holistic approach to assessments.

“Rather than ‘can you walk 20-metres’ they should test how far you can walk and how that affects your life,” emphasises Phillip. “It would be a much more sensible way of looking at it.”

As the campaign to scrap the 20-metre rule matures past its first year, disabled people continue to be failed by the criteria. The MS Society, along with people affected, continue their calls for change in the welfare system.

FOR MORE INFORMATION

Guidance and support on PIP and the 20-metre rule is available from the MS Society (www.mssociety.org.uk), Parkinson’s UK (www.parkinsons.org.uk) or visit www.gov.uk

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25/06/2019 12:13

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28/06/2019 13:00

enable voices

Tim Rushby-Smith

Wheels of parenting We all parent in our own unique way, Tim Rushby-Smith reveals his top tips on parenting as a wheelchair user so you too can be the best parent for your children – which is what we all want

P

arenting. This much I know.

I recently met a friend’s partner who is a new mother and wheelchair user. I reflected on my experiences as a wheelchair parent (a problem solver’s dream right until your offspring learns to ride a bike). It feels like a distant memory these days – my youngest recently turned eight – but I was happy to be able to pass on a few tips, some given to me by others who went before me, some I worked out for myself.

ON THE FLOOR

Sitting on the floor, if you’re able to, is a great way of taking the wheelchair out of the equation. It makes playing with a toddler much more fun, makes cuddles easier and eliminates the risk of running over fingers/toes/the whole child.

If you can’t manage a floor-to-chair transfer, then using a small step or stool and doing it in two (or more) stages can help. Failing that, getting on a double bed is always an option, but make sure no-one rolls off, and that all toys are accounted for. No-one likes a bed full of LEGO.

BALANCING ACT

Most humans are born with a whole bunch of instincts and reflexes, especially around balance and grip (think baby ape hanging onto mum while she moves around in a tree). Once children are sitting up, put them on your lap.

They will rapidly develop their own sense of balance, then moving around only requires you to keep an eye on them and wrap an arm around should they begin to tip or slide off, or you can put a lap belt around them and you.

A cautionary note here: should you end up with someone else’s kid on your lap, the lack of experience will soon be obvious. Be prepared for them to flop all over the place, otherwise you will lose them on the first corner.

HANDLES

Dungarees are a great piece of adaptive equipment for the wheelchair parent (when worn by the toddler, obviously).

Don’t skimp on quality here. The last thing you want is to be holding the straps of a pair of supermarket own brand dungarees while the child flies out of a weak seam and into the duck pond.

For this reason, avoid the ones with popper buttons, too.

There is a brand that rhymes with Posh Nosh that we found to be sturdy.

So sturdy in fact, that I was able to hold the back straps and lower my daughter to the ground in order to pick things up for me.

The most important thing to remember is that to your son or daughter, you are simply mum or dad.

The person they come to for love and support. That’s the bit that matters.

“

To your son or daughter, you are simply mum or dad

“

Beyond The Break, by Darren Longbottom and Tim Rushby-Smith is published by Ebury Press in Australia and is available internationally as an eBook

enablemagazine.co.uk

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25/06/2019 12:32

THE

SMEAR FACTOR Every year 1,200 people with a learning disability die unnecessarily from inappropriate healthcare. With less than a third of women with a learning disability attending a smear test, the impact is undoubtedly contributing to this number. We talk to one woman preparing for her first smear test 30 enablemagazine.co.uk

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25/06/2019 12:24

enable health

T

he uptake of smear tests in the UK is at a 20-year low with just 73 per cent of women aged 25-64 attending their cervical screening.

These figures are drastically lower for women with a learning disability.

Without the test irregular cells, HPV and cervical cancer can all go undetected.

Beginning at the age of 25 the triennial test saves an estimated 2,000 lives every year in the UK, but women with a learning disability are missing out.

Ciara, who is a campaigns support officer at Mencap, is one of the two thirds of eligible women with a learning disability not attending their smear tests. With only 31 per cent of women with a learning disability attending the test, the group is left at risk and misinformed.

CONCERN

As she approaches her 40th birthday, Ciara has decided to make an appointment for her first smear test; despite receiving invite letters since she was 25-years-old. When the first letter arrived in the post Ciara didn’t know what a smear test was.

Confused and concerned, Ciara turned to her family for an explanation. “My family really wanted me to go,” she remembers. “They explained it’s really important and detects cancer, but at the time I was more frightened than anything and I said I didn’t want to go.”

Ciara didn’t understand why it was so important to her as an individual.

Thinking that the test sounded invasive and scary, she decided not to attend.

“I think it was the fear of the unknown,” emphasises Ciara. “I didn’t really understand it at the time, I didn’t know what was involved and I didn’t know what happened.”

IMPORTANT

It shouldn’t matter if you have a learning disability or not, all women should have access to screening this year I’m going to be 40.

“Since her death I’ve realised I need to woman up and go because it’s a really important thing to do.”

In the wake of her cousin’s death Ciara knew it was time to change.

The event highlighted the importance of getting checked and inspired her to find accessible information about smear tests.

“I’ve learnt that cancer doesn’t care who you are or how old you are, it can happen to anyone,” states Ciara.

PROGRESS

Increasing the uptake of smear tests for women with a learning disability starts with raising awareness, creating accessible information, and eradicating stigma around smear tests.

“It’s really important INFORMATION You can take a to break down the When Ciara received friend, family taboo around smear her first invitation to member or carer tests and it’s really attend a smear test important that we there was little to no with you to a smear talk about cancer accessible information test for support awareness,” stresses for women with a Ciara. learning disability and Removing this stigma the internet was not what will give more women with we know today. a learning disability access to “I didn’t know where to get information, and allow them to ask accessible information from,” Ciara questions freely and comfortably. “I continues. “The invite letter wasn’t think if we can prove the process isn’t accessible, it didn’t make sense what as scary as you first thought then it this was about or why I was going.” might help other people go,” adds A lack of accessible, easy-read Ciara. information is one of the main barriers “I’m hoping more women with a to smear tests for women with a learning disability will attend a smear learning disability. With the growth of test and more lives are saved.” the internet the amount of accessible Women with a learning, physical, and easy-read information is growing, sensory disability or mental health too. condition are entitled to the same The NHS and Jo’s Cervical Cancer healthcare as their counterparts, Trust, alongside additional charities but without better information and have created easy-read information support the number of eligible women and other resources like videos. attending a smear test will continue What a smear test is, what to expect to fall. when you attend and how to prepare are now covered, but only if this information is searched for.

Due to a lack of accessible information Ciara has remained uninformed about smear tests for nearly 15 years, leaving her without the tools and knowledge to feel comfortable to attend.

Last year, Ciara’s cousin lost her battle with cancer, she HAVE explains: “I put it off and put YOUR it off, then sadly one of my SAY cousins died last year from What has stopped cancer, she was only 48 and you from attending

your smear test?

Let us know @EnableMagazine

030-031_EN_JA19_Smear tests.indd 31

easy-read, she says: “There’s better information now on the internet but there needs to be more that’s easy read and accessible for everybody.”

The taboo around smear tests and people with a learning disability being sexually active can sometimes make the topic feel uncomfortable for carers or healthcare professionals. This negative perception is leaving women at risk, Ciara stresses: “It shouldn’t matter if you have a learning disability or not, all women should have access to screening.”

After searching on the internet, reaching out to colleagues and family, and using social media, Ciara has decided to make an appointment for her first smear test.

FROM THE START

Ciara wants to see more information for women with a learning disability, starting with the invite letter being

FOR MORE INFORMATION

For easy-read information and other accessible resources about smear tests visit Jo’s Trust (www.jostrust.org.uk), or get medical support directly from your GP or the NHS (www.nhs.uk)

enablemagazine.co.uk

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25/06/2019 12:24

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adoption@medway.gov.uk

medway.gov.uk/adoption

Life after traumatic injury can be challenging Blesma is here for all serving and ex-Service men and women who have experienced loss of limb, use of limbs, hearing, sight or speech, either during or after Service

Get in touch to find out how we can support you and your family Tel: 020

8548 7080

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Email: membersupport@blesma.org Online: www.blesma.org

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IN ASSOCIATION WITH MEDWAY COUNCIL

Forever home C

Adoption is an enriching chance to welcome a child into your home to aid in their development, shower them with love and brighten their future

hildren with a disability can, unfortunately, spend longer in foster care before being adopted. Medway Council have three young children full of life, reaping the rewards of being in foster care and flourishing with the love and support of their foster family. However, the children are sure to thrive even more once adopted into their forever home.

DELIGHT

Liam is a delightful, smiley little boy who loves attention and interaction with adults and children. Like any other two-year-old, Liam adores being outside, watching everything around him; at home he likes getting all his toys out.

From a deep love of his foster family’s dogs, to getting excited when his foster father and older brothers come home: Liam has a lot of love to give. Getting the chance to play with the family, being pushed around in his toy car and playing with his abundance of sensory toys, Liam is thriving.

Liam’s foster family is at the centre of his development, where he attends groups facilitating a sensory room and

soft play area. As Liam has sagittal craniosynostosis, he attends regular appointments at Great Ormond Street Hospital to monitor his condition.

Living without speech causes Liam to become frustrated at points. But, with the love and support from his foster family, Liam is now walking – with supervision – and the signs on his development look positive. Could you be Liam’s forever family?

CONTENT

For Freddie and Gracie, the two-year-old twins have an incredible bond. Having been diagnosed with left hemiplegia cerebral palsy, as well as mild right hemiplegia, Freddie’s bond between himself, Gracie and their foster family is aiding in his development.

At times Freddie can become frustrated due to his limited mobility, but spending time with Gracie or his foster carer alleviates his tantrums.

Gracie has a gorgeous, infectious smile, so it’s not hard to understand why she is content with other children playing. But, her love for her brother will always shine through.

Gracie has been diagnosed with having global developmental delay, Gracie’s overall functioning is at around a 12-month level. However, as Gracie’s motor skills are slightly higher – at 15 months – she has now started walking.

As a sensory baby, Freddie is sensitive to loud noises and changes of temperature. Freddie also has glue ear and may need hearing aids in the future. He has also been diagnosed with retinopathy of prematurity which means he will be become shorter sighted over time, requiring high prescription glasses.

Freddie and Gracie have diverse needs and will need robust adopters who can devote significant time and attention to them. Are you able to welcome both Gracie and Freddie into their forever family?

FOR MORE INFORMATION

If you would like to know more about these children, please contact penny.cadman@medway.gov.uk; 01634 335689 for Liam. Or marie.marroquin@medway.gov.uk; 01634 335625 for Gracie and Freddie.

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LET’S TALK ABOUT

Voice banking Processing a diagnosis of Motor Neurone Disease (MND), or other associated illnesses, come with many possibilities to consider. One such experience could be preparing to lose your voice.

Now, voice banking could provide a solace and safety net for people set to lose their voice

A

dvances in technology have seen a surge in the number of adaptive technologies available to assist disabled people with everyday tasks, and help maintain a sense of identity and independence.

One such assistive technology is voice banking. Voice banking is an innovative tool that allows users to record their own voice, to be used once the ability to speak or communicate verbally is no longer an option.

Kay Lubek banked her voice for her mother, who has progressive bulbar palsy (PBP) – a type of MND. “I knew that my mother would lose her speech before she lost her ability to function, so I thought it would be a nice [option] to offer, meaning she

When my mother can’t speak, she’ll still be able to say whatever she wants to say

could still communicate in a way other than sign language,” explains Kay. “Once I had the kit, the process was easy. I did 350 sentences in a couple of hours and that was the job done.”

RECORDING

During the voice banking process, you will record a variety of sentences, using different sounds and syllables.

The sounds made during the recording will then be used to ensure any and all words can be communicated. This method creates a synthesised version of your voice.

“I was amazed that those syllables could be put together – you could say anything,” enthuses Kay. “When I was telling people about it, they thought that unless I said the phrase, my mother wouldn’t be able to say it, but, the programme allows you to make words that I haven’t actually said.”

For many, when they think of speech aids, they think of robotic voices that can’t easily convey emotion. Banking your own voice in preparation for losing your speech means you can retain a part of yourself and your identity that you would otherwise have potentially lost.

COMMUNICATE

“There is a reassurance that when my mother can’t speak, she’ll still be able to say whatever she wants to say – rather than others trying to interpret it through other means,” Kay continues.

“She’ll actually be able to get through exactly what she wants to say, instead of just giving a yes or no answer.”

Banked voices may sound slightly robotic, but there is another option available to avoid this: message banking. The process involves recording your voice, using words and phrases that you use a lot, or special messages. When these are replayed, they’ll sound exactly as you said them, allowing you to communicate feelings and emotions in a way a synthesised voice cannot provide.

“Make sure you do it early enough, because it can take time,” Kay advises.

“No one knows how useful it’s going to be until we’ve had more experience of using it. Bite the bullet and do it.”

Learn more about voice banking and how it could benefit you or your family by visiting the MND Association (www.mndassociation.org)

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25/06/2019 12:54

It doesn’t get much better than this…

Our Grangemouth based business has become synonymous with quality and choice. We do our best to ensure a permanent variety of fantastic disability products along with unique limited edition and seasonal items that suit any budget.

We’re also happy to accommodate custom orders for any products that you don’t see on our regular inventory list.

We’re a team of dedicated personnel with a genuine desire to ensure that your experience with us is easy, convenient and satisfying. Conveniently located in Newhouse Business Park, we’re driven by our dedication to provide the best customer service.

Service and Repairs

We also service and repair mobility products, wheelchairs, scooters, hoists and beds.

Great service begins with great people and industry experience, and our staff are the best and most qualified in the business. Visit us and get to know us better. Give us a call, or email us to discuss your needs.

All work is carried out by qualified engineers.

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The

disability price tag Financial inequality is a continual issue for disabled people due to inadequate funding and additional costs. But, how is change being made to improve financial support?

I

n February of this year, disability charity Scope revealed that disabled children and adults still face additional living costs compared with non-disabled people, in what is known as the disability price tag.

RESEARCH

“The price tag is the difference in standards of living between disabled people and non-disabled people,” explains James Taylor, head of policy, campaigns and public affairs at Scope. “There are many drivers – from the high cost of adaptive and specialist equipment; limited promotion of discount schemes and cost saving measures like the Warm Homes Discount, and a welfare system that doesn’t accurately capture the extra costs disabled people face.”

Scope’s research found that on average, disabled adults are faced with £583 of additional costs every month; one in five live with over £1,000 of extra costs per month, after receiving their welfare payments, which are intended to cover these expenses.

It isn’t just disabled adults that face added costs: families with disabled children pay an average of £581 each month; but for almost a quarter of these families, they’re faced with over £1,000 of added expenses per month.

ADDITIONAL COSTS

These additional costs, combined with the fact that employment opportunities for disabled adults and parents of disabled children are lower than the non-disabled population, mean there is a financial gap that isn’t closing fast enough.

“Since we began campaigning on extra costs, we have seen some positive steps from government, regulators and businesses,” says James. “However, as our research shows, disabled people and their families still face significant financial inequality.”

Scope’s recommendations to reduce financial inequality include completely reforming the Personal Independent Payment (PIP) assessment process, so that it accurately considers the range and types of additional costs experienced by disabled people; and improving the eligibility criteria for the Warm Home Discount, to ensure disabled people who face higher energy costs get better, more effective support.

MENTAL HEALTH

Of course, worries about money can cause a huge strain, and impact mental health.

Worrying about debt, upcoming payments and loans can be hugely stressful, leading to issues such as anxiety, panic attacks, depression and even suicidal thoughts.

These problems can, in turn, affect your ability to manage money, creating a vicious cycle.

Disability is not the cause of additional costs: they are caused by inequality, including a lack of accessible services, equipment and products that are affordable.

Key recommendations are in place, enabling the government to take the necessary steps to close the financial inequality between disabled and nondisabled people: it can only be hoped that they take the advice on board, and start to make real changes, that are long overdue.

Since we began campaigning on extra costs, we have seen some positive steps from government, regulators and businesses Get advice and guidance on the disability price tag by visiting the Scope website, www.scope.org.uk

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25/06/2019 12:23

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28/06/2019 11:40

Staying healthy

inside and out

The days are longer, the sun is out and summer is finally here. We look at how you can get out and about to aid your mental and physical health this summer

M

aintaining your health means more than improving your diet or fitting in exercise, it’s about working on your overall wellbeing, mental health, and tackling social isolation.

You can take small steps in different areas of your life to improve your overall wellbeing – and make this the best summer, yet.

IN THE KITCHEN

What we eat influences everything from our skin to our sleep schedule, so getting the nutrients you need from food is important. The foods you consume can also have an effect on the symptoms of different long-term health conditions for example, high amounts of processed sugar can worsen fatigue in MS patients.

Eating a healthy diet is even more important for people with a disability or long-term health condition. Some learning disabilities, like Down’s syndrome, carry an increased risk of obesity which can lead to things like high blood pressure and a risk of type two diabetes.

Having a healthy diet doesn’t require you to go on a fad diet and cut out sugar, gluten or any other food groups deemed to be bad: it’s all about balance. Small changes to your meals is a better option than changing your whole diet, and will create positive impacts on your health and weight in the long run.

Adding frozen vegetables to pasta

sauce, switching out a sugary snack for some fruit and using the traffic light system on food labels are all easy and cost-effective ways of improving your diet.

IN THE GARDEN

Gardening is a relaxing and easy way to keep active. The aerobic exercise is adaptable and can be practiced in any size of space making it accessible to everyone regardless of ability.

There are multiple health benefits, both mental and physical, that come with getting your hands dirty in the garden. Spending time outside means increasing your intake of vitamin D which helps bone strength, improving muscle strength and getting some well-needed fresh air.

Gardening has even been found

to help combat the progression of dementia. For people with dementia, gardening provides a safe environment in the outdoors which can stimulate their memory and improve attention span.

Along with the physical benefits of gardening it is beneficial for mental health, too. Gardening doesn’t have to be a solo activity and is great for tackling social isolation. Joining a gardening club or allotment group in your local area is a great way to connect with the community, swap tips and meet new people.

Before you get planting it is important to do some research and plan what you would like to do in the

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“

Gardening has even been found to help combat the progression of dementia

“

garden. Sites like Accessible Gardens (www.accessiblegardens.com) and Gardening for Disabled Trust (www. gardeningfordisabledtrust.org.uk) provide tips and advice.

IN THE OUTDOORS

Access to nature, parks and natural areas in the outdoors helps to boost mood and has physical health benefits.

Getting active in the outdoors is as simple as visiting your local park or switching part of your usual bus journey for a short walk.

Walking is the easiest way to incorporate outdoor exercise into your routine and use summer’s longer days to your advantage. Your local park, botanic garden or walking trails are all great places to immerse yourself in nature.

Being in the outdoors provides a multisensory for disabled children and adults alike. This can help build better communication skills, improve concentration and build long-lasting connections with others.

To find accessible parks and walking trails near you visit The Outdoor Guide (www.theoutdoorguide.co.uk) or Euan’s Guide (www.euansguide. com). If outdoor adventures sound more exciting companies like Equal Adventure (www.equaladventure.org)

run a range of outdoor activities for disabled people.

IN THE MIND

Wellness and mindfulness are appearing constantly in discussions on mental and physical health, but they are more than a trend. Wellness is a word used to describe overall mental and physical good health. Mindfulness is commonly used to make you more aware of your surroundings and how you think. It is especially beneficial for positive mental health.

The practice is used best to reduce stress, anxiety and frustration. This can be particularly helpful for people whose disability or long-term health condition is exacerbated by stress. Mindfulness Based Stress Reduction (MBSR) is a program used to aid people with stress, anxiety, depression and pain.

Over the course of several weeks people are taught to use mindfulness in daily life to deal with stressors. The practice has recently been used by the NHS to teach MBSR to people with a learning disability and their supporters.

Although it is used effectively as an intensive course, mindfulness can be implemented into everyday life. Apps like Headspace (www.headspace. com) help you to fit short meditation sessions into your everyday routine.

These are most effective when done at the same time each day.

For cost-free and effective meditation find a guided meditation video on video platform YouTube (www.youtube.com) or use a free app like Simple Habit (www. simplehabit.com) which provides five minute meditations to help with stress.

The practice has been proven to improve self-esteem, low confidence and tackle isolation.

FOR MORE INFORMATION

Get all the help and advice on improving your wellbeing this summer by visiting, www.nhs.uk

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Your Island Adventure

Lerwick

Stromness Scrabster

There’s no better time to explore Scotland’s Northern Isles.

Kirkwall

Aberdeen

With some of the world’s oldest architecture and magnificent archaeological sites, rich culture, festivals, breath-taking coastlines and fascinating wildlife - Scotland’s Northern Isles are the perfect destination for you to discover.

One of the most iconic sea stacks in the UK, the Old Man of Hoy stands at 137m high. Make sure you travel to Orkney on MV Hamnavoe to see it for yourself!

Your journey begins as you set sail with NorthLink Ferries.

MV Hamnavoe, MV Hjaltland and MV Hrossey were built with accessibility in mind. On board you’ll be able to enjoy many comforts before arriving at your destination feeling refreshed and ready to begin your island adventure.

With regular sailings from Scrabster and Aberdeen, travelling to Orkney and Shetland is more convenient than ever before.

Orkney and Shetland.

Escape the everyday.

One for the bucket list and a celebration of Shetland’s Viking heritage, the Up Helly Aa fire festival in the town of Lerwick takes place every January. Smaller fire festivals also take place throughout the islands between January and March.

www.northlinkferries.co.uk Operated by

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2 1

TOWER BRIDGE

Tower Bridge Road, London www.towerbridge.org.uk

The iconic London landmark is not just a bridge, but a historical monument, packed with stories and culture. First opened 120 years ago to improve city centre traffic, it has stood the test of time, and now you can take a guided tour to discover the wonders of the bridge yourself.

Visit the Victorian engine rooms, enjoy the breath-taking panoramic views of London, and if you’re feeling extra brave, walk along the glass floor, overlooking the busy road below. Tower Bridge offers autism-friendly time slots on the third Saturday of every month. Staff also provide British Sign Language (BSL) tours on the last Saturday of the month.

3

BRIGHTON BEACH

Madeira Drive, Brighton www.visitbrighton.com Soak up the sun and work on your tan at one of England’s most iconic and accessible beaches. The Seafront Office (141 King’s Road Arches) has two all-terrain beach wheelchairs, which can be hired for two hours on the day of your visit.

Your own wheelchair can also be stored at the office while you’re enjoying the sun and sea.

If you don’t fancy sunbathing all day, you can head to the nearby Sea Life Brighton next to the pier, or explore the Brighton Lanes – a maze of alleys and homes to many of the city’s quirky boutiques and cafés.

SEVEN STORIES

ENGLAND

Lime Street, Newcastle www.sevenstories.org.uk

If you’re looking for something fun to do with the kids, there’s no better option than Seven Stories in Newcastle. As the National Centre for Children’s Books, there’s always lots going on, with authors making regular visits and exhibitions. Make your visit as seamless as possible: visitors with a disability are eligible for a concessionary rate, and tickets for carers are free.

There is also an autism-friendly session on the first Saturday of the month. If you can’t make it to an early bird session, you can borrow sensory backpacks full of tactile items, ear defenders, or pay a visit to the quiet space. There are hearing loops around the building, and all films have subtitles.

HERE COMES THE

SUN

We’re spoiled for choice when it comes to activities for all the family this summer. Get yourself down to one of these accessible attractions, for a summer you won’t forget

4

CHILL FACTORE Manchester www.chillfactore.com

Home to Disability Snowsport UK (DSUK), Chill Factore is the ideal place to head for some summer respite. A range of adaptable equipment and trained staff makes skiing inclusive, regardless of ability, with private lessons delivered by DSUK. It’s recommended to arrive 30 minutes before your lesson begins.

Clothing hire is free to DSUK clients, however you must bring your own waterproof gloves. So, head to Chill Factore, to hit the slopes in style. You can call 0161 749 2222 for more information.

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SCOTLAND

5

LANDMARK

Carrbridge, Inverness-shire www.landmarkpark.co.uk

For the adrenaline seeker, there’s no better place to head than Landmark, up in the Scottish Highlands. Ride the rails on the Runaway Timber Train, put your investigative skills to the test in the Bamboozeleum and do your best Robin Hood impersonation at the shooting gallery. Discounts of 50 per cent are available for disabled visitors and carers go free. Make sure to pick up a Green Card, which will enable you to skip queues for rides and attractions.

Guide dogs are welcomed to the park and there are also wheelchairs available to rent.

6

KELVINGROVE ART GALLERY AND MUSEUM

Must visit: Linda McCartney Retrospective exhibition

Argyle Street, Glasgow www.glasgowlife.org.uk/museums

One of the most-visited free attractions in Glasgow, Kelvingrove Museum offers everything: from ancient artefacts and a ‘real-life’ haggis, to daily organ recitals.

The lower level entrance can be accessed from the car park and provides a step-free path into the museum. Wheelchairs and portable stools are available to borrow

from the enquiries desk on the lower level and induction loops are situated around the building. Assistance animals are permitted in the museum, with dog bowls and water also available from the enquiries desk. Staff receive regular disability awareness training, and some are certified Dementia Friends.

WALES

7

DÔL IDRIS PATH

Snowdonia National Park, Gwynedd www.snowdonia.gov.wales

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FOLLY FARM

Begelly www.folly-farm.co.uk

Always wanted to feed a lion or go face to face with a rhino? Then head to Folly Farm – and it’s fully accessible. Disabled visitors gain discounted entry and carers go free.

Accessible toilets can be found around the park and the changing places toilet near the vintage fairground is equipped with a hoist.

Thrill seekers can fully immerse themselves in the fairground rides, and don’t miss the Big Wheel, which has a wheelchair accessible carriage.

Get up close and personal with the animals for a day out to remember.

PIC: © MICHELLE EVANS; CSG; JOSEPH RICHARDSON

Explore Wales as it was meant to be discovered, deep in the wilderness, with fresh air in your lungs. This route has 1.25 km of accessible path through the Snowdonia National Park, which has been developed and opened in the last few years to make the park more inclusive. Along the route are accessible toilets, accessible picnic benches, a visitor centre and breath-taking views.

It’s graded Access for All, meaning regardless of ability, anyone should be able to embrace the path and immerse themselves in the Welsh countryside.

25/06/2019 14:37

Buy your tickets online in advance and SAVE!

This summer visit

Discover over 240 species from all around the world and 60 acres of beautiful parkland and lakes.

So much to see and do Get closer to nature with our daily encounters, interactive zones and exciting play areas, including our wheelchair-friendly outdoor play area, Remi Brown.

The Original Viking Encounter www.jorvikvikingcentre.co.uk

We aim to deliver a welcoming experience for visitors of all needs - visit

jorvikvikingcentre.co.uk/access for full details

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Great facilities We have a registered Changing Places facility, quiet zones and visual and social stories, which can be downloaded from our website.

Your wild adventure awaits... www.colchesterzoo.org

01/07/2019 16:45

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thediary JULY PIC: ©ELTC_BEN QUEENBOROUGH

11-14 JULY WIMBLEDON CHAMPIONSHIPS WHEELCHAIR EVENTS

Wimbledon, London www.wimbledon.com

The nation’s favourite tennis event is back this July, and is more inclusive than ever before. Alongside wheelchair singles and wheelchair doubles events, quad wheelchair players will be part of The Championships for the first-time.

The new events will be staged during the second week of The Championships with both singles and doubles matches.

14 JULY DISABILITY AWARENESS DAY

Warrington, Cheshire www.disability awarenessday.org.uk Disability Awareness Day (DAD) returns to Walton Hall Gardens in Warrington for 2019. The free, voluntary-led disability exhibition features more than 200 exhibitors, support groups and services. Events will take place in the week leading up to DAD, but on the day itself there is something for everyone with five key zones. From sports to the arts and children’s entertainment, DAD is the perfect family day out.

17 AUGUST SUPERHERO SERIES TRIATHLON

Dorney Lake, Windsor www.superheroseries.co.uk Grab your cape and a sidekick, the Superhero Series Tri is almost here. Walk, run, pedal or anything around Dorney Lake in Windsor as part of the UK’s only disability sport series with no equipment restrictions or time limits. Take part solo, as part of a team or with a trusted sidekick to help you around the course. The day is split into three activities, a run, a cycle and a swim, but you don’t have to participate in all three to earn your goody bag, t-shirt and medal.

All the latest events happening throughout July and August

10 JULY OTAC READING

Hilton Hotel, Reading www.otac.org.uk The Occupational Therapy Adaptation Conference (OTAC) is an essential day out for occupational therapists, assistants and support staff. At this year’s fifth event in Reading, OTAC will be packed with the latest equipment and adaptation guidance to aid your day-to-day practice.

This free event is the perfect opportunity to network, meet equipment suppliers, and attend CPD workshops. Seminar topics include single handed care, the Care Act, practical assessments for home adaptations and more.

AUGUST 10 AUGUST ONE BIG DAY HARROGATE

Yorkshire Event Centre, Harrogate www.motability.co.uk Learn about everything available on the Motability Scheme at One Big Day Harrogate. Over 100 cars, wheelchair accessible vehicles, scooters, powered wheelchairs and adaptations will be on display.

Motability Scheme advisors will answer your questions or take you for a test drive in an adapted or non-adapted car.

12 AUGUST ACCESSIBILITY GALA AT EDINBURGH FESTIVAL FRINGE

Pleasance Dome, Edinburgh tickets.edfringe.com

This Edinburgh Fringe show is fighting back against inaccessible festival venues that do not provide wheelchair access, with audiences missing out on great shows. With wheelchair access, an audio enhancement system, closed captioning and a relaxed performance, the Accessibility Gala is a champion for inclusivity at the festival. Taking place at the Pleasance Dome, the event will bring together a line-up of disabled and non-disabled comedians sure to get you laughing.

If you have any events coming up in September and October, email us at diary@enablemagazine.co.uk with the details for inclusion in next issue’s diary 44 enablemagazine.co.uk

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25/06/2019 14:43

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enable health

LOCKED OUT Thousands across the UK are suffering as stigma and misunderstanding of hidden disabilities becomes apparent.

With people living with Crohn’s or colitis facing discrimination for using accessible toilets we ask: what is being done to unlock the door?

I

STIGMA

“I have avoided public places for nearly a year, because of the fear of having an accident,” explains Marta Azmy Yousef about her life with Crohn’s. Diagnosed in 2007, Marta was in remission for eight years before the birth of her daughter.

Since, she has experienced Crohn’s related flare ups.

“I don’t look disabled at all, I am very fashionable, and I like to look good.

I don’t judge people for having such misconceptions about how a disabled person should look, but I do count our society responsible,” adds Marta.

ACCESS

Now, Not Every Disability is Visible is calling on public areas to change their accessible toilet signs to highlight hidden disabilities.

“We’re challenging the public perception of what disability actually looks like, and 80 per cent of disabilities are non-visible,” explains Andy McGuinness, campaign manager for Not Every Disability is Visible. “There is a huge amount of people who have a selection of conditions or ailments that require access to accessible toilets.

“People with an inflammatory bowel disease experiencing a flare up not only need to go urgently, but they need access at a moment’s notice,” continues Andy. “Also, 15 to 20 per cent of people living with Crohn’s or colitis have a stoma bag and require the extra facilities that are in an accessible toilet.”

PERCEPTION

Changing toilet signage is a simple yet significant move. Research from Not Every Disability is Visible found that 80 per cent of people feel more comfortable using an area with signage.

Unfortunately, people with hidden disabilities are still facing the stigma of using an accessible toilet, as Marta says: “I feel ashamed, lonely, upset and anxious, broken and at times that it is my fault. I had to adjust my life, to avoid such feelings. If everyone is informed

“

I have avoided public places for nearly a year, because of the fear of having an accident

“

n 2016 a campaign was launched to eradicate the misinformation surrounding hidden disabilities. Not Every Disability is Visible was born out of a passion for improved understanding of disability in our society.

There are an estimated 300,000 people living with inflammatory bowel disease (IBD) in the UK. The most common forms of IBD are Crohn’s disease or ulcerative colitis.

Experience of cramping, diarrhoea, fatigue and weight loss, plus an urgent need to use the toilet – accessible toilets are essential for people living with IBD. However, there is still stigma around the hidden condition.

about invisible illnesses, people like me would feel accepted in a society where disability is seen only as a visible condition.”

With 75 per cent of people living with Crohn’s or colitis deciding which restaurants, cafes, pubs or public spaces to visit based on their accessible toilet facilities: it is evident the importance accessible toilets have for people living with hidden disabilities or conditions.

FOR MORE INFORMATION

Get involved with the campaign by visiting Not Every Disability is Visible (www.noteverydisabilityisvisible. org.uk) or get advice from Crohn’s and Colitis UK (crohnsandcolitis.org.uk).

Read the extended feature on our website, www.enablemagazine.co.uk 46 enablemagazine.co.uk

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01/07/2019 16:46

Pushing for

Progress The rise in disability visibility on a global scale is something to be celebrated, but that’s not to say there isn’t still a long way to go. Campaigns around the world are going the extra mile, ensuring disabled people get the representation they deserve

T

he Christopher and Dana Reeve Foundation – a USAbased charity that provides support to people who have a spinal cord injury, resulting in paralysis – created the aptly named See Us campaign.

Launched to demand increased disability representation in everyday life, See Us urges people to listen to the voices of disabled people, see the achievements of individuals, to combat the stigma surrounding disability.

What began as a local movement is beginning to inspire similar campaigns around the world, demanding better visibility and representation for disabled people in all aspects of public life, including politics and the media.

POLITICS

There have long been calls for better access, to enable disabled people to get more involved in the world of politics.

With 20 per cent of the population being disabled, and less than one per cent of the MPs representing the disabled population, much more needs to be done.

Jamie Szymkowiak is a political and disability activist, who co-founded the Scottish based One in Five campaign in 2015. Referencing the fact that one in five people in Scotland are disabled, the campaign aims to improve disabled participation and representation in politics.

The group campaigned for the Scottish government to create a fund dedicated to enabling disabled people to partake in politics and stand for election: this created the Access to

Elected Office Fund.

“It starts very early on at a grassroots level,” Jamie explains. “It’s about governments encouraging and empowering disabled people to be active and accepting that all levels of activism are valuable – whether that’s stuffing envelopes or doing telecanvassing, because getting involved at a grassroots level is what increases your confidence.”

MEDIA

In terms of visibility, the media is at the forefront, deciding what viewers get to see in films, television, music and more. The media is a powerful force in society, and has huge influence over public opinion and perception. It is vital then, that the media is accurate when portraying disabled characters in film and television.

Recent years have seen leaps and bounds forward in terms of disability visibility in the media. In March 2018, actress Rachel Shenton accepted the Oscar for Best Live Action Short Film for her film The Silent Child. Featuring deaf actress, Maisie Sly, as the main character, the movie showed the realities of life for a deaf child. Rachel also communicated her acceptance speech in British Sign Language (BSL).

At the National Television Awards in January, James Moore won the Best Newcomer award, for his portrayal of Ryan Stocks in Emmerdale. He used his acceptance speech to talk about the importance of the inclusion of disabled actors in TV, and take the industry to task over what they can do to improve representation.

And in June this year, Ali Stroker became the first wheelchair user to be nominated for, and win, a Tony award.

“When you see someone who’s like you on TV, it makes you feel accepted and I don’t think you can disregard the importance or significance of that feeling,” explains Jamie. “To be included in society makes people feel confident, that they’re accepted and it’s okay to be different.”

MORE

However, there have also been setbacks along the way. When Ali Stroker won her Tony award, there had been no ramp built for her to access the stage and accept her award. Luckily, she was still backstage after performing immediately before her success was announced. She was the only cast member of Oklahoma! not on stage to accept the Best Revival of a Musical award, due to the lack of a ramp.

In January, actor Bryan Cranston was

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enable

spotlight

criticised for defending his decision to play a wheelchair user in The Upside.

The controversy raised questions about whether non-disabled actors should ever play disabled characters, and started a wider debate about the erasure of minority groups in mainstream media.

These serve as a reminder that while visibility in the media has come a long way, there is always more that can be done and we need to keep pushing.

CELEBRATE

Alice Wong is also involved in disability activism and is the founder of the Disability Visibility Project: an online community that aims to promote disability in the media and culture.

“Follow, listen, and believe disabled people,” Alice urges. “Disabled people have important perspectives that are missing in mainstream media. For example, when the UK passed a ban on plastic straws, stirrers and cotton

buds, disabled people were speaking out about how it would impact them.

“Seek disabled people for every level in your organization, including interns, reporters, editors, and producers. The talent is out there.”

Beyond the media and politics, there’s plenty we can all do to be more mindful of disability in everyday life.

“Take a look around and you’ll find disability everywhere,” continues Alice.

“All political issues are disability issues.

There are disabled people in every single diverse community.

“Uplift stories where disabled people are telling their own stories rather than other people telling them on their behalf. Support the work of disabled writers, poets, and artists by attending their performances, buying their books, or clicking on their links.”

Though there is still, admittedly, a long way to go, the progress made in recent years – in politics, the media, and public life – point to a shift in the way

disabilities are perceived in society.

“When you find allies and you increase your social circles, it makes you feel like you’re not alone,” Jamie urges.

“When you realise you’re not alone, together you’re able to tackle things, make opportunities for yourself and others.”

When you find allies and you increase your social circles, it makes you feel like you’re not alone FOR MORE INFORMATION

Follow disability progression with See Us (www.christopherreeve.org/see-us) and One in Five (www.oneinfive.scot)

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27/06/2019 12:10

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Immerse yourself in the towering sea cliffs, or relax in the dunes and sandy beaches of Studland before becoming mesmerised with the Old Harry Rocks. Forming the western point of the Jurassic Coastline, show off your holiday snaps at this World Heritage site.

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02/07/2019 09:09

enable life

After I’m gone Making provisions for when you are no longer here can be difficult to think about, but being prepared means your disabled loved one will receive the correct care and attention

P

utting provisions in place for when you are gone ensures your loved one continues to receive a high standard of care. Making a Will and setting up a trust can ensure this happens.

THE RIGHT FIT

The first step to creating a suitable Will or trust is finding the right solicitor.

When looking for a solicitor check that they are certified by STEP (www.step. org), the professional association for practitioners who specialise in advising families.

A solicitor who specialises in creating Wills and trusts for people with a disabled loved one will know about the best options for you and your family.

If you know other people who have created a Will or trust with a disabled loved one in mind, ask them for advice and what solicitor they used.

When you contact a solicitor always ask for a price and timescale. They should be able to tell you this over the phone or via email. Enquiring with a few different solicitors can be helpful, but price often reflects the quality of work which will be carried out.

LETTERS

If you decide to set up a trust it is important to include letters of wishes.

These letters detail how the fund is to be run. It is recommended to leave two letters of wishes with a trust for a disabled loved one.

The first of these letters details who is to benefit from the trust and how it should be run. Some trusts require you to have at least two beneficiaries, these should be named in order of who you want to benefit the most.

The second letter of wishes explains the likes and dislikes of your loved one.

This is important if the trustees who run the fund don’t know the beneficiary well. Include things that your loved one needs to be happy.

Placing money in a trust is a safe way of providing ongoing support for a loved one Get more advice from Down’s Syndrome Association (www.downs-syndrome.org.uk), Scope (www.scope.org.uk), and Mencap (www.mencap.org.uk).

ASSETS

If you plan to leave money, property or other high value assets to a disabled loved one it can be beneficial to include them in a trust. Creating a trust means that any inheritance left will be controlled by a third party.

Leaving inheritance out with a trust for a disabled loved one can cause a number of problems. If they are on means tested benefits these could be cut leading to the inheritance being used to pay for support services.

Similarly, inheriting a large sum of money can be overwhelming for a disabled loved one, especially in an emotionally distressing time. Placing money in a trust is a safe way of providing ongoing support for a loved one.

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01/07/2019 16:53

MOTORING

News

NEW PRODUCTS REVEALED AT BROTHERWOOD WAV SHOW DURING THE THREE-DAY BROTHERWOOD WAV Show 2019 a range of exciting, adaptive motoring products were revealed to hundreds of visitors.

Taking place at Haynes International Motor Museum, amongst a selection of over 30 special purpose vehicles on display the new, unique WHEELCHAIR UPFRONT conversion for the Peugeot Traveller – the Brotherwood Lioness – was revealed.

Although just a concept vehicle at present, visitors were impressed with the huge internal headroom on offer in this inclusive vehicle, including travelling in comfort next to the driver.

Secondly, a preview at the new interior for the Brotherwood Klastar

Mercedes-Benz V-Class –developed in partnership with luxury coach builders Senzati – was revealed. The Senzati package adds an outstanding sense of luxury to an already stunning interior.

The Senzati package incorporates bespoke quilted super-soft leather furniture, an amazing quilted diamond headlining with sensory colour fibreoptic lighting, a custom handcrafted centre console with 4G and Wifi, Apple TV and DAB Radio, enhanced soundproofing and insulation and much more. This one of a kind package provides an exceptionally luxurious travelling experience for the most discerning client.

Discover the Brotherwood Lioness, Brotherwood Klastar, and much more by visiting www.brotherwood.com

Allied mobility introduce all-new Peugeot Horizon™ FOR ALMOST A DECADE now, the Peugeot Partner Horizon™, from Allied Mobility, has been far and away the UK’s best-selling wheelchair accessible car. All things must change, of course, and we’re now excited to launch the next phase of the Horizon™ story.

With the latest addition to the range coming in the impressive Allure spec as standard, enjoy additional user benefits including parking sensors, electric parking brake and PEUGEOT i-Cockpit® eight

inch colour touchscreen with in-car entertainment system, which mirrors your Apple or Android smart phone. There’s also stylish body-coloured bumpers and Taranaki alloy wheels to finish the sleek look of the all-new Horizon™.

Allied Mobility’s unique Easyglide™ ramp now offers an even lower angle for ease of access, whilst still being ultrastrong and simple to use Taking over from the previous model, the new Rifter represents a huge

leap forward in terms of technology, economy and modern good looks. Just as importantly, it continues the tradition of spacious interior dimensions, which are so crucial for creating space and comfort for the wheelchair user.

For more information, or to arrange a free home demonstration of the brand new Peugeot Rifter Horizon™, call a mobility advisor on 0800 587 9613, email info@alliedmobility.com or visit www.alliedmobility.com/horizon

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NISSAN LEAF REVIEW

A byword for electric cars, the latest Nissan Leaf is more comfortable, spacious and can travel further between charges. Alisdair Suttie puts the wheels in motion

INSIDE Nissan has had to tread a fine line with the cabin of this secondgeneration Leaf. It needs to reflect the car’s forward-thinking approach, but not be so fancy that it puts off a wider audience. We reckon they’ve got it about spot-on, though some might find it a bit too much like other small hatches. Certainly, there’s quite a profusion of buttons and switches compared to many rivals that have slimmed down on this front.

However, the Leaf’s dash layout is easy enough to master and the quality of materials is first rate, even if there’s not as much of the soft-

touch finishes that you’ll find in a Focus or Golf. We’d also like a little more adjustment in the driving position as taller drivers may find the seat doesn’t move far enough back. You also sit quite high up, but we see this as a positive.

However, the steering wheel cannot be altered for its reach, only the angle.

There’s plenty of space for the driver and two more adults will fit easily into the back seats. As for the boot, it will cope with a wheelchair, but getting it in and out means lifting it over a tall boot lip.

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enable motoring

“It rides very

well for a comfortable, cushioned journey and it’s extremely refined

“

Enjoy better journeys on the road with the Nissan Leaf.

Available from NIL Advance Payment with Motability www.motability.co.uk

EQUIPMENT You can pick between three trim levels, starting with the Acenta that has 16-inch alloy wheels, cruise control, rear-view camera and 8-inch colour touchscreen. The infotainment works with Apple Car Play and Android Auto, and all Leafs come with charging cables. The N-Connecta gains 17-inch alloys, man-made leather upholstery, rear privacy glass, Around View Monitor that gives a bird’s eye overview when parking, all-round parking sensors and Moving Object Detection to warn of pedestrians. The Tekna adds leather and suede trim for the seats, LED headlights, an uprated Bose stereo, Lane Keep Assist and Nissan’s ProPilot with Traffic Jam Pilot to take the stress out of congestion. The Leaf e+ only comes in Tekna trim.

DRIVING There are two sides to driving the Nissan Leaf. First are the basics, so it rides very well for a comfortable, cushioned journey and it’s extremely refined. It also steers, stops and corners as well as most of the better small hatches you can buy.

On the other hand, there’s all of the technology that comes with the Leaf. As an electric car, you can drive it without much need for the brake pedal as regenerative braking slows the car. All you do is modulate the throttle pedal, which you soon become accustomed to. Recharging the Leaf is simple and, depending on which method you use, can be achieved in anything from eight hours at home to 30 minutes at a rapid charger.

Choose the Tekna model and you get

the ProPilot system. It allows for semiautonomous driving so the car can guide itself along motorways and dual carriageways with only a routine nudge on the steering to let it know you’re in control. It makes life at the wheel very relaxed, while the Traffic Jam Pilot makes light work of clogged up roads.

SUMMARY Yes, the Leaf is electric, but it’s the labour-saving technology of the topspec model that marks it out as a worthwhile car to consider.

enablemagazine.co.uk

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Find out everything you need to know about the Motability Scheme, in a fully-accessible venue.

Join us at an event near you

Open 9am - 4pm

→ Westpoint, Exeter - Saturday 27 July 2019

→ Yorkshire Event Centre, Harrogate - Saturday 10 August 2019

→ East of England Arena, Peterborough - Saturday 7 September 2019 → Royal Highland Centre, Edinburgh - Saturday 21 September 2019

Find out more at motability.co.uk/onebigday or call 0800 953 7000 Please quote MO717D To test drive the cars you must bring your full UK driving licence and sign our test drive declaration on the day. Full Terms and Conditions can be found at motability.co.uk/onebigday. One Big Day is organised and hosted by Motability Operations Limited, which is authorised and regulated by the Financial Conduct Authority.

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enable life

Product Roundup At home or for care professionals, we look at the must-have accessibility aids STYLE

POSTURE

WHEELCHAIR WRAP

P-POD POSITIONING CHAIR

Nicosy, POA www.nicosy.co.uk, 01638 563615

NRS Healthcare, £721.60 exc VAT www.nrshealthcare.co.uk, 0345 121 8111

A simple and effective chair, the P-Pod supports posture for children and young people living with impaired mobility. The chair compromises of a bean bag and symmetrical seat which fits onto the bean bag to promote a high degree of postural support. An exceptional additional aid for in the home.

HOME

The Nicosy is an incredibly soft and secure wrap that is designed specifically for wheelchair users. It is tapered to avoid wheel entrapment and fixes to most wheelchair models.

Their high-quality polar fleece material is available in a huge range of colours in sizes medium, large as standard.

LAP TRAY

Blue Badge, £20.84 exc VAT www.uksmobility.co.uk, 0161 969 4011

These comfortable and convenient lap trays are sure to make eating, reading, or working easier. Coming in a selection of colours and styles, the lap tray is a filled beanbag with a sturdy, durable surface. The aid was initially launched on Dragon’s Den and benefits many with ease of use and practicality.

MOBILITY

THERAPY

IWALK 2.0

THERAPY GEL BALLS

Think Sport, £159.95 inc VAR www.thinksport.co.uk, 020 7501 1100

Complete Care Shop, £35.94 inc VAT www.completecareshop.co.uk, 03330 160 000

If you’re recovering from an injury and looking to maintain mobility, then the iWalk 2.0 hands free crutch will aid in your journey. Allowing your hands to be free – unlike more traditional crutches – you can work on your core strength, build up balance and preserve independence.

STYLE

COILERS

Suitable for professional or home use, therapy gel balls offer various resistances, allowing independent or client use to develop strength and grip through structured exercise programmes. Exercises can strengthen weakened or injured hands, fingers, wrists and forearms. Each ball is colour coded to match relevant exercise.

Essential Aids, £4.99 exc VAT www.essentialaids.com, 01273 719 889 Tying shoelaces can be tiresome and restrictive for people living with impaired mobility or tremors. The coiler shoelaces (available in brown, blue, white, and black) will put ease to securing shoes, as, once attached the coilers never need to be tied. When in place, laces can be tightened or loosened without strain.

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Introducing the Nicosy An incredibly practical, comfortable and stylish wrap accessory.

Fits to most wheelchairs Super-soft polar fleece material Unique strap keeps the wrap in place Tapered to avoid wheel entrapment Easy to open and keeps the feet free Large range of colour and pattern options Easy to remove and wash

Available in small, medium or large as standard in a huge variety of colours or customise your own to suit your exact needs and taste.

ORDER YOURS TODAY www.nicosy.co.uk or call 01638 563615

Panova

Smart Lift Solutions

www.panova.biz Mail@panova.biz

01482 480710

PORTHOLES

LOUVRES

POWER TRANSFER UNITS

LOCKS AND CYLINDERS

SPECIALIST ARCHITECTURAL HARDWARE SUPPLIERS TO THE DOOR OPENINGS INDUSTRY FLUSH BOLTS

VISION FRAMES

Your home without limitation Enjoy the feeling of getting around your home freely and easily . Take control of your surroundings and enhance your independence with Panova. Our lifts are discreet, unobtrusive and designed to match your decor. Avaliable for indoor and outdoor use.

060_EN_JA19_ADV.indd 60

FINGER PROTECTION

DOOR STAYS

PANIC HARDWARE

ACOUSTIC SEALS

ZERO SEAL SYSTEMS LTD UNITS 43-45 LADFORD COVERT SEIGHFORD STAFFORD ST18 9QG TEL - 01785 282910 E-MAIL - SALES@ZEROPLUS.CO.UK WWW.ZEROPLUS.CO.UK

27/06/2019 10:45

enable life MOBILITY

6000 WHEELCHAIR LIFT

Gartec Home, POA www.gartechome.com, 01296 397100

HOME

Add stylish accessibility to your home with Gartec’s most popular and flexible home lift. Boasting up to six-floor travel and 410kg capacity, the 6000 is ideal for wheelchair users and passengers together. The family-safe, compact design looks great tucked away or on display, and with doors on different sides it works with your home flow. The range of stunning design options, including glass, colours and flooring, compliment any home design.

DREAMA

MOBILITY

MOBILITY SCOOTER

TGA Vita, POA www.lida-partners.co.uk, 0800 112 3114

Jenx, POA www.jiraffe.org.uk, 0114 285 3376

A cut above the rest, the TGA Vita mobility scooter is sure to meet all your needs. The high-tech scooter is larger with increased solidity compared to other Midi variants. With full suspension, easy read display console, plus speed control levers and more – the TGA Vita is a must have aid.

Improved sleep quality through supportive full depth, pressurereducing cushions. The Dreama 24-hour positioning system can vastly reduce pressure in both children and adults. The flexible aluminium base allows for easy contours, with ventilation to reduce heat-triggered spasms, and it is easy cleaned.

HOME

MOBILITY

BATH LIFT

FOOD PREPARATION BOARD

Aquila, £295 exc VAT www.manageathome.co.uk, 0808 178 1524

Etac, £40.83 exc VAT www.manageathome.co.uk, 0808 1678 1524

Have a relaxing bath safe in the knowledge that you can have secure and comfortable entry and exit. The Mountway Aquila bath lift comes with a reclining back rest and is battery powered to ensure easy access.

Lightweight, compact and flexible, the bath lift is the perfect accessible tool for any home bathroom.

Create a culinary masterpiece in the comfort of your own kitchen with the assistance of the Etac food preparation board. The board comes with vice type jaws that can hold any food or kitchen equipment in place. It also comes with a detachable spiked pate, which can hold small pieces of food for cutting.

SENSORY

EAR DEFENDERS

Earbudeze, £9.50 exc VAT www.sensorydirect.com, 01905 670 500

Ear defenders are an essential aid for children and adults on the autism spectrum. At times noise can be difficult to process and cause anxiety, with ear defenders you can easily block out sound, such as vacuum cleaners or when over stimulation happens. The defenders can be easily folded away and come with a padded headband.

enablemagazine.co.uk

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enable subscribe

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ews, interviews, real life stories and the latest must-have products, Enable Magazine is the UK’s award-nominated disability and lifestyle title.

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25/06/2019 15:16

Pictured: Bobby during rehabilitation at The Children’s Trust

Music Therapy at The Children’s Trust Written by Carly, Mum to Bobby.

My six year old son Bobby can take 150 steps now.

It’s a miracle as far as I’m concerned. He screws his little face up and concentrates very hard. And off he goes in his helmet in case he falls. My heart jumps every time. I think yours might too if you could see him!

A year or so ago, he couldn’t even hold his head up, never mind walk. I’d like to talk to you about music and the difference it can make. It’s extraordinary, and it’s also pretty interesting.

You might think that music therapy sounds like well-meaning people playing tambourines to poorly children. I think I probably did before Bobby’s accident.

But in the hands of The Children’s Trust, it’s so much more than that and adds to all the physical therapies the children receive during their rehabilitation stays, with the most extraordinary effect.

Think how you learned your times-tables in that sing-song voice at school. How you make your family’s phone numbers sink into your brain in little chunks with the help of a rhythm. Those rhymes you’ve found yourself singing to small children that have never left you because they were learned so early. And the songs from when we were teenagers that make us nod and jiggle in our seats when they come on the radio in the car.

This is what music therapy taps into. Repetition.

Rhythms. Memories.

Bobby was five years old when he was run over by a car nearly two years ago. He was airlifted to hospital where he had three brain surgeries for his injuries in 48 hours, and I sat with him for four weeks in a coma. They said he had a 10 per cent chance of surviving. When he became conscious, he’d lost the ability to speak or walk, and was being fed through a tube. I could see other parents thinking, ‘Thank God that’s not my child’.

When he was moved to The Children’s Trust for rehabilitation, he was so fragile. And I was feeling so bleak. But do you know what? After a few days, I started to hear stories about the progress children had made there, and the focus changed, from saving Bobby’s life to helping him start again.

It’s such hard work for children. Day in, day out. They need a fun side. And music brings that. It motivated Bobby and brightened him up so he didn’t even realise he was learning and working.

Music therapy is so much more powerful than just brightening a child up, though. It actually helps to create new pathways for moving and communicating in the brain, to get round the connections that have been damaged by a brain injury.

So at first, for example, by encouraging Bobby to pluck at a guitar, which produced a sound he liked, Bobby learned without realising it to make that important small pinching movement with his fingers again – the kind you need for holding a pencil or a fork. Then playing simple tunes on a keyboard helped him practice coordination and concentration.

Physiotherapy got Bobby back up on his feet, but then the rhythms of his favourite music helped with making his walking better, his steps more even, so that the day we left, he got up out of his wheelchair to ring the big brass ‘going home’ bell with everyone cheering.

Can you imagine!

But brain injury also often takes away a child’s ability to speak, to let you know when they’re frightened or sad or just need a hug. Bobby had always been a chatty little boy, but after the accident he could only make noises. It was so hard. Using music along with speech and language therapy helped Bobby learn to communicate and talk again. It started

by Bobby learning to shape the noises he could make into vowel sounds. Jonathan, one of the therapists, made up a song for Bobby using those sounds and a musical keypad Bobby would press along with it. He started singing quietly, but soon he was belting out, conducting the whole family to sing with him. His talking is really coming along now. We no longer need the communication grid he came home with to point to pictures to help him with what he wanted to say. Now Bobby can tell me what he wants or needs without it.

Music therapy helped give Bobby back his voice and so much more.

To find out more about the rehabilitation services provided by The Children’s Trust for children with acquired brain injury, including music therapy, please visit www.thechildrenstrust.org.uk

Registered charity number. 288018.

Registered office: The Children’s Trust, Tadworth Court, Tadworth, Surrey, KT20 5RU. TCT_543 CLINIC June 2019

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The

CRESCENDO to RECOVERY As the benefits of music and reconnection become more prominent, Saskia Harper spoke to a charity utilising music therapy in rehabilitation to support children living with brain injury

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A

fter acquiring a brain injury, life can be significantly changed: when a child acquires a brain injury, this is amplified.

Children’s brains are constantly growing, developing and learning, so it can be particularly challenging when they acquire a brain injury. However, there are groups on hand to ensure families are supported every step of the way.

REHABILITATION

The Children’s Trust is a charity that provides both residential and community-based rehabilitation services for young people who have a brain injury or neurodisability.

According to the NHS, 40,000 children acquire a brain injury annually, as a result of accident or illness. It is vital then, that services continue to develop rehabilitation methods, to ensure every child has the best chance for recovery.

Claire Wood joined The Children’s Trust 17 years ago as a part-time music therapist, before being invited to set up a Music Therapy service within the charity’s neurorehabilitation team.

EDUCATION

“As a team we want to help children re-learn physical and cognitive skills and find compensatory strategies where necessary,” Claire explains.

“We work towards getting them back home or to their local community and getting them back to school or college.

“Many aspects of acquired brain injury are hidden disabilities: a young person may re-learn how to walk or adapt to having a weaker arm, but differences in how they think and the extreme tiredness can be hard for parents, siblings, friends and teachers to understand,” continues Claire.

“We support them all to develop an understanding of this, so that children can thrive.”

As the current creative therapies professional lead, qualified Music Therapist and Neurologic Music Therapist, Claire’s role is varied, but also particularly rewarding, working closely with children affected by brain injury and their families.

MELODY

Music has a wide range of different

It can be very powerful for a child who cannot speak to find another means of self-expression benefits, both physical and mental.

Emotionally, the benefits are staggering. Music can improve mood, reducing feelings of stress and anxiety. It has also been proven to boost cognitive skills, such as attention and memory; with a plethora of research supporting the credibility of music therapy in dementia care.

“Music is universal – nearly everyone responds in some way to music,” Claire enthuses. “We all use music throughout our day: to unite with others and feel a sense of belonging by singing at weddings, funerals or at football matches; to enliven us and relax on the dance floor.”

The powerful impact that music has on listeners can be huge, tying us to memories, feelings and connections from throughout our lives.

“Music is deeply expressive,” explains Claire. “Music therapists work closely with psychologists to provide emotional support to young people – for example by giving a space to express musically what cannot be said in words. This may support young people who cannot speak or cannot speak as well as they used to, but can access different musical instruments and music technology.

“It can be very powerful for a child who cannot speak to find another means of self-expression. It might be that the creative process of songwriting and recording can help a young person come to terms with their experience through this creative process.”

THERAPY

It’s no wonder then, that music works so well as a method of therapy for a variety of different brain conditions.

Not only can this improve mental and emotional rehabilitation, but it can

have physical benefits, too.

“In music therapy we tap into this innate quality of music and use science and research to make optimum use of music in rehabilitation,” Claire continues. “Music is processed in all areas of the brain and rhythm is linked with the motor cortex. We utilise this in sessions with physiotherapists, using rhythmic music to support developing a better walking pattern.”

The change from the beginning of the rehabilitation process to the end often leaves many parents astonished at the progress their child has made, and music therapy can play a significant role for some young people. Not only does music help with children’s rehabilitation, but it can also make it fun: children can enjoy the therapy, and parents can take pleasure in seeing their children thriving once again.

“We often think of using music for relaxation, but it can also have an alerting quality,” says Claire. “Children may alert to different sounds or songs, which can be crucial to them engaging in rehab and learning. Every child’s response to music is different. We try to find out the known likes and dislikes of young people, so that we can bring familiar music that might motivate them and put them at ease.”

RESOURCE

As a parent, when your child acquires a brain injury, it can be a particularly isolating experience. Charities such as The Children’s Trust are on hand to help you make connections with other families going through similar experiences. This can be a hugely valuable resource for parents, ensuring the process is less lonely and you are supported every step of the way.

So, if your family has been recently affected by brain injury, rest assured there is plenty of support out there to help you move forward with rehabilitation.

“Use all of your support networks for yourself and your child,” Claire concludes fervently. “Be as well informed as possible and don’t give up hope.”

FOR MORE INFORMATION

Discover how music can be beneficial for your child by visiting The Children’s Trust (www.thechildrenstrust.org.uk) or call 01737 365 000

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spotlight

ON CALL WITH AN

Admiral nurse

There are over 850,000 people living with dementia in the UK. Providing a beacon of guidance, support, and care is an crucial team of workers: Admiral Nurses. Giving specialist dementia support to families, Admiral Nurse Rachel Murray discusses her role

“A

dmiral Nurses are there to help care for the carer,” explains Rachel Murray, who worked as a registered nurse for over 20 years, before becoming an Admiral Nurse two years ago. “It’s identifying the pivotal role that carers have.”

Dementia is an umbrella term for a set of symptoms, which can include memory loss and communication issues, affecting people of all ages. In fact, 42,325 individuals are diagnosed with young onset dementia in the UK. For this reason support is essential.

Dementia UK trains, develops and supports Admiral Nurses in their roles.

Admiral Nurses are named after Joseph Levy CBE BEM, who was affectionately known as Admiral Joe by his family

FORTUNATE

“There is not a day goes by where I don’t think how fortunate I am to meet carers who work tirelessly,” continues Rachel.

“And it’s all out of love.” Working across six GP centres in her local authority, Rachel guides families to ensure the best service is made available for their loved one – whilst being committed to supporting the mental wellbeing of a carer.

Rachel explains: “If it has been identified that a family is struggling I receive a referral and we look at any aspect of support for that family. What is so important within this role is the fact that if a family is struggling, then it doesn’t matter what they are struggling with. Dementia turns everything upside down, and it is so unpredictable.”

VARIED

From providing skills and techniques to encourage communication to allow families to stay connected all the way to helping families to live positively, Admiral Nurses have a plethora of techniques to assist families. Dementia is an isolating, and at times terrifying condition, that’s why the work nurses such as Rachel do is imperative.

But, from Rachel’s experiences, families are excelling in figuring out the best way to stand by their loved one.

CHANGE

“People have adjusted and changed their day-to-day so they can understand their loved one,” enthuses Rachel. “That is so essential with all dementia care, it’s learning to adjust and adapt.”

Having aided in setting up a Dementia Carers Course in her local area – where carers and their loved one can attend a training session alongside healthcare professionals to legal aid – Rachel, and the team of Admiral Nurses across the UK are bringing a shining light into the darkest times of dementia.

“Even before I carried out my nursing training, I always admired the older person and their wealth of expertise.

It is never just somebody sitting in a chair – it is a tap dancer, or someone who fought in the war. The experience

It’s learning to adjust and adapt to the changes that come with dementia an older person can share is absolutely phenomenal,” emphasises Rachel. “This is an individual person, and whatever way we can try and capture that back into finding what wealth of life they have lived is just such an honour.”

FOR MORE INFORMATION

Dementia UK (www.dementiauk.org) are available to you and your family for expert advice. To speak with an Admiral Nurse phone 0800 888 6678 or email helpline@dementiauk.org

Read our full interview with Rachel online at www.enablemagazine.co.uk 66 enablemagazine.co.uk

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LEGO LEARNING L

earning whilst you play is a prominent part of early adulthood education, both inside and outside of school. Educational aids can be integral to supporting development within the classroom.

LEGO is one of the largest toy organisations worldwide. We can bet that almost everyone reading this has, at one point, played with LEGO. And now, accessibility is at the heart of the new LEGO product: Braille Bricks.

CONNECTION

Over the years many organisations approached the LEGO Group and LEGO Foundation with an idea to combine LEGO bricks with braille. Taking inspiration from Brazilian foundation Dorina Nowill, who encouraged LEGO to scale their own prototype proposal for Braille Bricks, the idea soon came into fruition.

Stine Storm, project lead on LEGO Braille Bricks, explains: “This latter proposal was very elaborate and detailed, and came at a time where the LEGO Foundation had introduced a department dedicated to look at new ventures.”

EDUCATION

Bringing the two parties together, LEGO is changing the way people

Our blind partners call it a new gateway to the world of braille not only learn braille, but understand the importance of tactile products in learning. With an estimated 19 million children living with visual impairments globally* initiatives such as this are a step in the right direction.

Learning is individual and one way to learn is kinaesthetic – also known as tactile learning. This is where a student carries out their learning by doing, instead of listening or watching demonstrations.

For learners with a visual impairment, tactile learning can provide a new sensory experience for people with visual impairments or severe learning disabilities. And now, Braille Bricks are taking their form of learning global.

WORLDWIDE

Currently being distributed free to those in need through partner networks – it is the aim to continue distribution this

way after the pilot – Braille Bricks are being utilised, and tested in English, Norwegian, Danish and Portuguese.

“Every Braille alphabet has local language differences, which makes complexity huge due to us also printing on the bricks,” explains Stine. “To get optimal benefit, LEGO Braille Bricks is supported by a teaching concept that our local blind partners must implement along with the toolkit.” This is to ensure all learning is specifically tailored.

Furthermore, LEGO’s Braille Bricks is breaking barriers between disabled and non-disabled children, young people and adults with the chance to learn braille. Through play, people can educate themselves on the braille alphabet to connect and communicate with others in a new way.

Just in the pilot stage, the response to the bricks has been overwhelmingly positive. Stine enthuses: “Our blind partners call it a new gateway to the world of braille, and they hope it will lead to many more children wanting to learn braille – and with learning through play, this makes it all the easier for all parties – children, parents and professionals.”

* WORLD HEALTH ORGANISATION

As leading toy manufacturing company, LEGO pilot their innovative Braille Bricks to promote inclusive learning, we got tactile with LEGO project lead, Stine Storm

FOR MORE INFORMATION

Discover more about LEGO Braille Bricks by visiting, www.lego.com

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Registers of Scotland (RoS) has fairness at its core.

We have been named as a disability confident employer

by Jobcentre Plus and have a positive attitude towards job applications from disabled people.

Place your creative SEND students with us • We work with many local authorities to provide creative SEND students with the vocational qualifications they need to progress on to University and creative careers.

• We also offer most popular academic GCSE and A Level courses • We can be added to EHC plans Students can start anytime

As we progress through 2019 we will be working to improve the ways that we support our staff, customers and stakeholders, regardless of disability, gender, ethnicity, age, religion or sexual orientation. This is a process that we will review constantly – delivering equality is an ongoing process, not an event.

Call FREE 0800 612 0439

Employment Opportunities Over 100 careers paths – one employer Know what you want to pursue as a career, or looking for ideas? Interested in employment or placement opportunities?

We recognise the value that everyone brings to our organisation. Through our ‘Job Interview Guarantee’ we will consider you on your abilities and guarantee an interview where you meet the essential criteria for the post. We have a wide range of jobs at entry and qualified level and offer great opportunities for career development – and much more.

All our vacancies are advertised on: www.jobs.scot.nhs.uk More information on the initiatives NHS Lothian are involved in and details of our modern apprenticeships can be found at: www.careers.nhslothian.scot.nhs.uk Come and see what we can offer for your career in healthcare.

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Access at work Registers of Scotland (RoS) work hard to ensure they are an equal opportunities employer, doing their utmost to design services for their customers and supporting disabled members of staff. Sue Rees shares her career progression with RoS

N

amed a disability confident employer by Jobcentre Plus, RoS strive to take a positive attitude towards job applications from disabled people. Similarly, the organisation ensures their products are as accessible as possible.

ACCESS

Operating within a smart working environment, which enables flexibility in accommodating disabled members of staff, RoS is inclusive in every matter from services to the building.

Offering a range of different seating options – including standing desks – making physical access easier, RoS is committed to making additional adjustments to support disabled employees, which doesn’t just extend to their physical spaces.

PERSONAL

Sue Rees, a member of the colleague experience group in HR found that a combination of medical support, as well as adjustments at work, have allowed her to stay employed.

Living with a primary immune deficiency, Sue’s immune system doesn’t produce the right number of antibodies to fight infection meaning Sue can’t fight a cold on her own.

“Most of the people I know with my condition cannot work. I am treated by being on antibiotics all the time – 24/7,” explains Sue. “Once treatment started for me, that meant that I kept my job.”

Alongside getting medical support, Sue was met with understanding at work, and a willingness to adjust ensuring Sue’s health was a priority.

UNDERSTANDING

“I found that by giving my employer all the information and letting them see my diagnosis letters, I was given more leeway on my sick leave,” continues Sue. “Last year, I was given a room of my own which, when I am not in, can be used as a meeting room.

“I’ve also moved to a position where I can work from home meaning I had a winter when I didn’t get a bug, which was so unusual,” enthuses Sue. While adjustments have allowed Sue to stay in work, there is the consequence of isolation. However, RoS is in the midst of a programme of digital transformation – part of its move to a smart working model.

TRANSITION

Sue has found this move beneficial in terms of isolation that her disability can lead to. As well as offering the flexibility to work from home, RoS also utilises Skype for business, video conferencing, and an improved staff intranet.

“When it comes to working from home, that’s still quite new for me,” Sue explains.

“But because we have Skype, email, and our own intranet, I can interact straight away. Isolation doesn’t completely go, but it makes a nice big dent in it.”

I found that by giving my employer all the information…

I was given more leeway

Join the world of work with RoS by visiting, www.ros.gov.uk

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Find your perfect place.

As a leading recruitment outsourcing provider, Guidant Global can offer you direct and exclusive access to great jobs with some of the UK’s top employers.

We’re also a Disability Confident Leader, and our award-winning approach to disability inclusion is building careers and changing lives.

criteria required for the job) and please don’t forget to tell us about any adjustments you might need during the recruitment process.

It goes without saying, we welcome applications from people with disabilities! In fact, if you have a disability, we’ll guarantee you an interview for any internal role (assuming you meet the minimum

If you would like to find out more about inclusive careers at Guidant Global, or search for roles with our amazing clients, please visit our website. jobs.guidantgroup.com

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Improving inclusion with

IPO T

he IPO is the governing body that is in charge of intellectual property rights, such as patents, trademarks, designs and copyright. You can apply to the IPO to ensure you are protected from other people using your creativity and making money from it, or claiming it as their own.

Intellectual property includes the names of your products or brands, inventions, designs and anything you write, make or produce.

SUPPORT

Fraser Stewart joined the IPO in 2014 as an associate patent examiner. Since, he’s helped to create iThink, the IPO’s neurodiversity network for autistic employees, and colleagues with dyslexia.

“We launched iThink in 2017,” Fraser explains. “Because of some of the difficulties I’ve had at work, I’m keen to make sure other people don’t face similar problems. I organise meetings and represent people at the higher level of management, to get adjustments made in the workplace to help other colleagues.” iThink provides the opportunity for autistic colleagues to meet up and discuss any challenges in the workplace. They have also implemented a buddy system, meaning members of iThink can be paired with external colleagues, who they can go to with any concerns.

“Sometimes, it can feel like you’re the only one that’s having difficulties,” continues Fraser. “Knowing others are going through similar things is reassuring.

It’s been a massive help.”

When looking for a job, it’s important to find the companies which will go the extra mile to be inclusive. At the Intellectual Property Office (IPO), inclusion is ingrained in the workplace culture, and their commitment ensures it’s a brilliant place to work for all employees out to each other and we trust each other.”

The Peer2Peer network not only provides colleagues with mental health support, but also plays a part in reducing the stigma of mental health in the workplace.

INCLUSION

“Don’t be shy about disclosing your disability,” Fraser urges. “When I disclosed my autism, they were able to make adjustments to the interview process, which meant my application was successful. The aim of disclosure is to make it fair. It’s never going to be to your detriment to disclose.”

There is a vast range of support in place at the IPO, which makes it an inclusive workplace, meaning employees with different needs can thrive in the workplace and are able to do their job to the best of their ability.

“The IPO is a great place to work,” Dave enthuses. “It’s so inclusive and supportive and the organisation appreciates that everyone’s different; every employee is an individual with individual needs.”

Knowing others are going through similar things is reassuring

There are a wealth of employment opportunities with the IPO, for more information visit www.gov.uk/government/ organisations/intellectualproperty-office

MENTAL HEALTH

iThink isn’t the only employee network run at the IPO: Peer2Peer is the company’s mental health group, for employees who may be experiencing difficulties with their mental health.

“We meet once a week, holding discussions on mental health-related topics,” says Dave Watts, the network chair of Peer2Peer. “It provides a safe, inclusive and supportive environment for people to come to. Members know they can reach

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MEDIA MOGUL If you’re looking for a job in the media, there are plenty of opportunities and schemes to help you get your foot in the door of the exciting, fast paced industry

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o matter which sector of the media you’re looking to start your career in – be it broadcasting, print, or working behind the scenes – organisations across the country are making their application processes and workplaces more accessible for all.

CHANNEL 4 As the only media outlet that has been awarded the third level of the Disability Confident Scheme, Channel 4 (www.channel4.com) ensures that diversity and accessibility is ingrained into the workplace culture.

The company has just rounded up recruiting for their PARAS Production Training Scheme, which will see 16 disabled candidates gain media training.

Though applications for this programme are now closed, Channel 4 is committed to ensuring all their positions are accessible and continue to encourage disabled candidates to apply for paid opportunities.

Traineeships are available across screenwriting, investigative journalism and directing as well as human resources, marketing and finance. For those looking for a position to further their career, there are always positions across a wide range of roles.

BBC The BBC’s Extended Hub (www.bbc.co.uk/careers) is a recruitment portal for disabled applicants, which is applied to apprenticeship and trainee roles.

With opportunities available across journalism, production, technology and business, there is something for everyone.

When making a job application, you’ll be able to see if the Extended Hub is available for the role. As part of the

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Channel 4 is committed to ensuring all their positions are accessible

“

Extended Hub, the BBC will contact you before the interview stage, to discuss adjustments they can make to the process, ensuring you have the best possible chance of a job offer.

Starting each September, the roles last for roughly 12 months and aim to inspire candidates to pursue a career in the media after they finish their training.

The wonderful thing about the Extended Hub is that it can be applied to most roles within the BBC, meaning both trainees and experienced candidates can use it in their applications.

THE GUARDIAN Gaining work experience is one of the key ways to get the skills necessary and make a name for yourself in the media. If you’re looking to gain experience in print journalism, you need look no further than The Guardian (workforus. theguardian.com).

The Guardian’s Positive Action Scheme runs for two weeks during the summer, aiming to improve representation in the media across the board. Every year, they run one of these schemes for aspiring disabled journalists.

Successful candidates will be fully immersed in the workplace, gaining experience on both the online platform, and in print, too. You’ll be paired with a member of staff to shadow and learn from the best in the business.

There is no shortage of opportunities in the media. Now it’s time to grab your notepad, and head out there to get your first scoop. We can’t wait to read it.

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THE KEY TO

Flexible learning Distance learning gives disabled people the opportunity to study from home. We speak to a member of The Open University Disability Support Team to discover the benefits, challenges and support available

T

here are thousands of distance learning courses in the UK ranging from short one day courses to fulltime degrees for you to broaden your horizons.

CLEAR OPTION

GUIDANCE

At The OU (www.open.ac.uk) disability support begins the moment you apply for a course. During the application process students are encouraged to fill out a form giving more details about their disability and learning needs.

“It’s essentially letting us know what they think they’ll need,” explains Maxine.

“There are advisors who are here to talk through their needs and set up support.”

Assistive technology, module resources in alternative formats, and mental health support are all provided free of charge by The OU.

“

Students are able to study at the time which suits them best Students can also take exams at home or ask for support on the day of an exam, for instance utilising a note taker.

This assistance continues throughout the degree and can be adapted if your circumstances change.

TACKLING ISOLATION

The range of support available while distance learning is not limited to academic support, it is social, too.

Although there is a risk of feeling socially isolated when learning from home, there are measures in place to prevent this, Maxine explains: “You can pick up the phone and speak to an advisor at any time but there’s lots of support online like forums and disabled students’ groups on social media, the online nature of it means support is 24/7.”

“

The nature of distance learning taking place mostly online means it is an extremely flexible mode of learning and is often the perfect option for people with a disability.

Maxine Squirrell is the senior manager of the alternative formats team at The Open University (OU). “Students are able to study at the time which suits them best,” explains Maxine. “If you had set lectures that might not always suit the person.

“Studying in your own time can benefit people with a disability nicely, because people don’t need to travel to a building or move from room to room throughout the day.”

Without the need to attend tutorials or lectures, the risk of sensory overload or anxiety over social situations is reduced.

Alongside studying itself, tutors are able to adapt deadlines to suit students’ individual needs. “If your condition has flared up and you’ve not been able to study they might be able to grant an extension,” emphasises Maxine.

If you think distance learning is the right option for you it’s as easy as finding a course and applying online.

Distance learning is a fantastic opportunity providing you with the chance to study if you can’t physically attend a university, whilst also building confidence and independence. Once you start the possibilities are endless.

FOR MORE INFORMATION

Get your education off to a new start with courses and support provided by The Open University (www.open.ac.uk) or browse different distance learning courses at, www.distancelearningportal.com

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Autism training and development With over 50 years of experience, no one has more practical knowledge of autism The National Autistic Society is here to transform lives, challenge attitudes and build a society that works for autistic people.

We offer: • Autism Accreditation programme

Upcoming conferences

Women and Girls 11 September, Edinburgh Bringing together specialists – researchers, practitioners, and autistic women themselves – this conference explores issues around diagnosis for girls and women, shares the most recent findings, and gives tips on the latest best practice.

• Conferences and Awards • Consultancy to suit the needs of your organisation

Autism and Mental Health 10 October, London

• Essential newsletters for professionals • Dedicated residential and supported living for adults • Specialist schools • Training: at your work place, scheduled open access events, or online modules • University courses and modules

This conference will give you tools and strategies to identify and provide targeted support for autistic people with mental health difficulties. This event is a great opportunity to hear from and network with acknowledged experts in the field and to gain a wealth of knowledge, engage in debate and exchange new ideas.

Find out more

www.autism.org.uk/professionals The National Autistic Society is a charity registered in England and Wales (269425) and in Scotland (SC039427)

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The transition to

HIGHER EDUCATION

Your time in higher education will be some of the most exciting years of your life, but it can be intimidating going from high school into university or college. One student shares her top tips on preparing for higher education with a disability

PREPARATION

Regardless if you are moving away from home or starting classes at your local college, preparation is key.

There is a host of support available for students with a disability.

Lauren applied for Disabled Students Allowance (www.gov.uk) before she started university. This is the most common benefit for disabled students

to help with the cost of assistive technology and other essential aids.

Lauren received a laptop to assist her in lectures and with course work.

If you are moving to a new city where you don’t know anyone, connecting with people on social media can also help to put your mind at ease. “Join any group chats created for your course or accommodation,” Lauren recommends. “Get familiar with people you will be living or studying with to help the transition.”

ASSISTANCE

Alongside financial support, your education institution will have a dedicated disabled students’ support team. Contact this department before you apply to learn about what support will be available to you. These contact details can be found on the institution’s website.

A dedicated support worker and Lauren worked together to find out how Lauren would best learn, speak to her lecturers, and tailor exam arrangements to her needs.

This took away any pressure when she started classes, Lauren explains: “It was good to know that I wasn’t going to have to speak with each lecturer to make sure it was taken into consideration.”

This support has continued throughout Lauren’s time at university.

As she embarks on a year abroad for the third year of her degree, the

“

Get familiar with people you will be living or studying with to help the transition

“

S

tarting your new university or college course is often the first step towards independent living, making new friends and learning new skills, but there might be some underlying nerves for parents and prospective students.

Lauren, who is autistic and has been supported by the National Autistic Society (www.autism.org.uk), is about to start her third year studying languages at university. Going to university was always something she strived to do, she says: “I wanted to be away from home and living in another city while studying something I was interested in.”

The transition to starting university can be a wonderful step into a new way of life. For Lauren the benefits have been immeasurable. “I have noticed an increase in my mental health and I now have a sense of self,” she enthuses. “I’m a lot more confident than I used to be and so much surer of myself as a person.”

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you. The key thing Lauren has learnt during her time at university is not to take on too much while you study.

“I feel like there’s a pressure when you get to university to join five different societies on top of your course and it’s not realistic,” advises Lauren. “Take on a maximum of two and I think that works well.”

ACCOMMODATION

supportive nature of the university has put Lauren’s mind at ease.

“I’m going to be able to go and study in France and China next year,” she explains. “I’ve had a lot of support arranging my year abroad.”

FRIENDS

Meeting new people and making friends is one of the best parts of university or college. By connecting with fellow students through social media you might already have a group of friends when you leave home, but there are other ways to unite with

your peers.

One of the easiest ways to meet new people is to join a club or society.

After trying a handful of societies during first year, Lauren settled on one she enjoyed in her second year of university.

“This year I picked up a sport and I now play ultimate frisbee,” she says.

“It gives me an encouraging, laid-back atmosphere to get into sport and my team mates are great people that I get along with.”

Come and try sessions are a great way to see what society is right for

Living independently while you are at college or university is both exciting and daunting. It means flexibility and freedom, but comes with the responsibility of caring for yourself.

If you have complex care needs a personal assistant (PA) can help you to live independently.

When she first moved to university, Lauren made the decision to stay in catered halls, she says: “I found it was good for me because it forced me to interact with people and I’m still friends with a lot of those people today.

“For me it was a big transition so I didn’t have to worry about cooking and things like that,” she adds.

At the beginning of her second year Lauren moved out of halls and into a student house, but this isn’t the right option for everyone.

“Don’t feel pressured when it comes to housing,” stresses Lauren. “Don’t be afraid to take your time to find people you are comfortable with, if you can’t that’s OK.” Most student accommodation will rent rooms to students who aren’t in their first year. This is a perfect option if you don’t feel ready to take on more financial responsibility for things like separate bills and rent.

After you have prepared, found support and started classes, the most important thing is to have fun and get studying. You’ll be settled into your new degree before you know it.

FOR MORE INFORMATION Get the latest advice and expertise about going to university or college with a disability by contacting the Disabled Students Helpline (www.disabilityrightsuk. org) on 0330 995 0414 or email students@disabilityrightsuk.org

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enable voices

Tackling social isolation

During her gap year Ellie Simpson, who has cerebral palsy, started to feel socially isolated.

Motivated to create opportunities for other young disabled people Ellie set up her charity, CP Teens UK, and got involved with sport

I

n 2013 Ellie Simpson finished secondary school, but like many young people her age decided to take a gap year. As her friends left home to attend university, Ellie felt increasingly secluded.

“

When you’re at home it’s easy to think there’s no one out there

“

ISOLATION

Ellie is not alone in feeling disconnected, half of disabled people say they feel lonely with one in four saying they feel lonely every day.

Determined to find opportunities and meet new people, Ellie created a Twitter account aimed at connecting teenagers with cerebral palsy and similar disabilities.

“It wasn’t just for me but for other people like me,” stresses Ellie. “I thought I must not be the only one out there in this situation.”

After gaining more than 200 followers overnight, Ellie knew she was onto something big, she says: “When you’re at home it’s easy to think there’s no one out there, but once you realise there are people your life opens up.”

CHARITY

The account’s reach continued to grow and CP Teens UK (www.cpteensuk.org) was born: a group of likeminded young disabled people looking to connect. “I just found there was no opportunities out there for people with physical disabilities,” explains Ellie. “I went online and I couldn’t find any support groups so I thought I would set up my own.”

Two years after the charity’s inception Ellie decided to hold the first CP Teens UK event, the reaction was overwhelming, she remembers: “I see people coming to the events for the first time and I recognise the relief on their faces, they’re thinking ‘oh wow, there’s other people like me’.”

While Ellie ran the charity, she studied Sports Development with Coaching at Sheffield Hallam University. “It was hard, but because I really enjoyed both my

degree and the charity it never seemed too much,” she recalls.

SPORT

Ellie’s love for sport influenced her university choice, and her degree pushed her to get to the top of her sport: RaceRunning. Using three-wheeled frames for support, RaceRunning allows people with impaired balance to compete in running events.

With hopes of getting more people involved in the sport, Ellie set up England’s first RaceRunning club and went on to win multiple medals.

Now, Ellie is a young sporting ambassador for Cerebral Palsy Sport (www.cpsport.org), she says: “To be an ambassador and the face of RaceRunning is amazing.

“I can remember looking at other people in this position and being like wow, so it feels a bit weird to be that person.”

As the charity and Ellie’s ambitions grow, she plans to host events for young people with cerebral palsy across the UK throughout 2019. We can’t wait to see what she does next.

FOR MORE INFORMATION

Visit www.cpteensuk.org to learn more about the charity and Ellie’s story.

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