kidz
to
ADULTZ
MAGAZINE
ISSUE 7 / MAY 2020
IN THIS ISSUE... FREE CAMPS FOR CHILDREN CALL THE MIDWIVES! CADENT GAS – KEEPING YOU SAFE TALKING ABOUT SEX EDUCATION
Win! £100 gift voucher
KIDZ TO ADULTZ EXHIBITIONS: LIVE! KEEPING YOU IN TOUCH WITH EXHIBITORS
Stay in find out! During these unprecedented times, the Kidz to Adultz team will do all we can to support you in whatever way we can. Don’t miss out! T E FREQUENTS IV E C E R O T EN ITE N THE WEBS RY TICKETS TO THE EV O R E T IS G E R D FREE ENT UPDATES AN R TIPS, COMP EFER REGULARLY TO S ETITIONS, A DVICE AND OCIAL MEDIA MUCH MOR E... W E N R ! U E O IV H L : IT S W ION LINK LTZ EXHIBIT U D A O T Z KID CHANNEL FACEBOOK AS FROM OUR CK FOR ADVICE & SUPPO O R & BOWEL U LLEAGUES AT BLADDE T K AND DISA R BLED LIVING
The team at Disabled Living would like to show our gratitude to NHS Staff and other frontline workers who are helping keep the country safe 2
WELCOME TO OUR LATEST ISSUE
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e are all in very challenging times and nobody could have ever predicated the impact the Coronavirus would have on us. What we thought was our normal everyday life, most certainly isn’t anymore and I can certainly say I have no idea what the new ‘normal’ will be! I am so pleased we can still bring you the May edition of the Kidz to Adultz Magazine, even if it is only in digital format. We do however, have some excellent content so please take the opportunity to put your feet up for an hour, hopefully in the wonderful sunshine and find out a little more about the fabulous people who have contributed to the May edition. We hear from Stephanie Wheen a physiotherapist who has ambitious plans to open Gympanzees, a fully inclusive exercise and leisure destination. There is an article from the charity ‘Over the Wall’, who provide free camps for children with serious health challenges and their siblings. We have a new feature, which in each edition will focus on a ‘little known’ charity and the charity in the spotlight this time is PEEPS. We introduce you, to not one, but two budding authors. Pam Aculey, is the mother of Walter who was diagnosed with ASD. Pam has put her talents to the test and produced the ‘Just Like Me’ series of books, with the most wonderful illustrations. In contrast, we also have the first part of a cartoon series called Wilbur Wheels. Jim Ault, shares his inspiration with us, for the creation of his new character after working for many years in the disability industry as a wheelchair engineer. You get a glimpse into the lives (past and present) of the three midwives who work at Slater and Gordon Lawyers and learn some interesting facts you will not know unless you read the article! Sex education is a difficult topic to broach at the best of times, whether you are a parent or professional. Fiona Boorman, a specialist nurse shares her suggestions in how to approach what can be a delicate topic. I have to thank the organisation, Action for Happiness who have given us permission to reproduce their ‘Action Calendar: Meaningful May’ – 31 Actions to look after ourselves and each other as we face this global crisis together. Until we can resume the Kidz to Adultz Exhibitions we have decided to introduce a brand new online channel; Kidz to Adultz Exhibitions: LIVE! Our exhibitors will showcase their products, services, competitions and much more with LIVE videos each week on our Facebook channel! The Kidz to Adultz team have decided they would like a Mascot and need your help! Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz
Competition time – we need a mascot!.............................................5 Gympanzees is aiming high........................................................ 6 Wilbur Wheels................................8 Free camps for children with serious health challenges..................................... 12 Buster finds his beat............ 16 Cadent – keeping you safe & warm................................................... 21 Charity focus – Peeps.......... 26 Call the midwives.................... 28 Action calendar......................... 32 Talking about sex education........................................ 36 The word ‘independence’ terrified me................................... 40
kidz
ADULTZ
to
Welcome!
CONTENTS...
E MAGAZIN ISSUE 7 / MAY
2020
UE...
IN THIS ISS
DREN
PS FOR CHIL
FREE CAM
CALL THE
KEEPING ENT GAS –
CAD
Win!
!
MIDWIVES
YOU SAFE
CATION UT SEX EDU
TALKING ABO NS: LIVE! LTZ EXHIBITIOIN TOUCH KIDZ TO ADU KEEPING YOU BITORS WITH EXHI
£100
gift voucher
FANCY BEING IN THE NEXT ISSUE?
If you would like to talk to us about promoting your company or organisation in the next issue of Kidz to Adultz magazine, call us on 0161 214 5959 or email us at magazine@ disabledliving.co.uk
Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY
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www.fbcmb.co.uk
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Specialists in Head and Brain Injury Claims Our Serious Injury and Medical Negligence specialists understand how traumatic the consequences can be when you or a loved one is injured as a result of an accident or medical negligence. We will support you and your family to move forward by putting you and your recovery first with access to rehabilitation and continuing care where possible. We will work tirelessly on your behalf to secure the compensation you need to live your life to the full.
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CALLING ALL KIDZ FANS
competition time
Can you put your creative hats on and design a mascot that we can use to promote the Kidz to Adultz exhibitions. While you are still off school or college, we know you have plenty of time on your hands so there is no excuse not to enter our competition!
The Rules
• Open to anybody 25 years and under • Your design can be hand-drawn or computer designed • Your mascot must be in colour and fit on one side of A4 paper • Email your design to info@ disabledliving.co.uk • Closing date 30th June 2020
The Prize £100 Gift voucher
The winning entry may be incorporated into branding materials
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Gympanzees
IS AIMING HIGH
GYMPANZEES AIMS TO OPEN THE UK’S FIRST FULLY INCLUSIVE AND ACCESSIBLE EXERCISE AND LEISURE DESTINATION FOR THOSE WITH DISABILITIES
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ounded by paediatric physiotherapist, Stephanie Wheen, Gympanzees incorporates physiotherapy and occupational therapy principles to allow the 84% of children and young people with disabilities who cannot access regular leisure facilities to enjoy exercise, play and friendship. Currently, in its early stages, Gympanzees has facilitated three pop up versions of its permanent centre in Bristol, to prove the concept while developing a fundraising strategy for the first permanent centre. These pop ups have seven main rooms – soft play, indoor playground, trampolines, gym, calm sensory room, active sensory room and a music room as well as a sociable cafe. With sensory integration equipment amongst the extensive variety of disability and regular equipment placed throughout, each room is tailored to ensure every person accessing it is achieving physical exercise, building on gross and fine motor skills, or to stimulate and meet individual sensory needs. Experienced staff are placed throughout the centre to interact with visitors and facilitate the best use of equipment and the most
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engaging time. 97% of the almost 4000 visitors across the 58 days of the pop ups have expressed that they love Gympanzees and would come again. Visitors have travelled up to a 5-hour round trip to visit the pop ups, with some people staying overnight and turning the experience into a holiday. Some highlights from Gympanzees so far • 52 visitors have experienced the sensation of walking thanks to machines such as the Innowalks and Upsees • A 15-year-old boy with quadriplegic CP has since joined his local gym as he enjoyed it so much and gained the confidence to go • A 6-year-old boy walked on the treadmill for 12 minutes and then walked on his own for 10m when previously he had only managed a couple of steps • One boy with sensory issues opened one of his hands and played in the sand for the first time through interactive play with a member of staff • A three year old boy had his first ever laugh • Many examples of motor
skills improving, balance and coordination improvements and children sweating or exercising for the first time • Many examples of children with autism or sensory processing problems being happier, calmer, more confident and being actively sociable with strangers and their family Gympanzees are continually working to become more accessible, with the introduction of adult sessions outside their original 0-25 age range, as well as studio-style spaces for disability sport, dance classes and rooms for physiotherapists. While they work towards the first permanent centre, they will continue to run pop ups in the school holidays in Bristol to ensure the need for affordable, fun, physical and sensory activity is being met. We want every family to feel like the parent who commented. To follow the Gympanzees journey, find them on Facebook, Instagram and Twitter @GympanzeesUK or sign up to their newsletter on www.gympanzees.org.
Wilbur Wheels
JIM AULT SHARES WITH US, HIS INSPIRATION FOR THE CREATION OF THE CHARACTER ‘WILBUR WHEELS’ “When we walked out of Gympanzees - happy, played out, kids in tow – (husband) & I both felt lighter: ‘like a proper family’ (not sure what I meant by that exactly but that’s what I said!)”
F
rom a long term career of working within the disability industry, as a wheelchair engineer, part of my daily routine involved visits to repair and upgrade wheelchairs and associated equipment for children and young adults. It was during these visits, especially with the younger children, I noted a distinct lack of a representational character, the children could associate with, and perhaps, ultimately learn from. Clearly, there were established fictional television and comic book characters, but none directly related to disabled children from whom they could truly enjoy and relate to. With my knowledge of wheelchairs, seeing how the children function in both school and home environments, combined with an insight into their day to day routines and activities they enjoyed, I set about creating a unique character just for them. My artistic background gave me the foundations I needed to create a fun loving little boy who, along with his friend, would enjoy adventures while learning life’s skills along the way.... WILBUR WHEELS was born! From an equally enthusiastic and supportive response from the Kidz to Adultz team, Wilbur Wheels the first, of a two-part cartoon adventure is launched to you, the reader! If you enjoy Wilbur Wheels and think you would like to see him in a children’s book format, please leave your comments at: WILBURWHEELS@hotmail.com
See the first cartoon on the next page ➤
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MONDAY, WEDNESDAY & FRIDAY 12.30PM The virtual way to find the equipment and services you are looking for Until our Kidz to Adultz events resume, we have launched our brand new online channel; Kidz to Adultz Exhibitions: LIVE! Companies and organisations who would normally exhibit at our events, will showcase their products and services through a live stream on our Facebook channel. During and after the video will be the opportunity to link directly through a LIVE question and answer session.
Join our growing audience of over 5,000 followers and look out for our weekly schedules on social media. We look forward to seeing you on Kidz to Adultz Exhibitions: LIVE!
Kidz to Adultz Exhibitions: LIVE! Will feature: Theraposture, Smart Box, R82, SeenIn, Wizzy Bug by Designability, Widgit and many more……….. How to be involved? It’s really easy, just LOL! During these testing times, we need to keep a smile on our faces and have a laugh when we can!
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FREE CAMPS FOR
children
WITH SERIOUS HEALTH CHALLENGES
SINCE 1999, THE CHARITY, OVER THE WALL HAS PROVIDED FREE LIFE-CHANGING ACTIVITY CAMPS FOR CHILDREN, TEENAGERS AND FAMILIES LIVING WITH SERIOUS HEALTH CHALLENGES.
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riginally founded by the Hollywood legend, Paul Newman, the charity has enabled over 8,000 children to experience its free, transformational, residential camps. Each of these camps provides memorable, fun and empowering experiences in a physically safe and medically sound environment. The focus of all camps is helping campers to discover how amazing they truly are, using therapeutic recreation - with a strong focus on fun. Childhood illnesses There are over 50,000 children and young people in the UK living with a serious health challenge. For these young people, quality of life is adversely affected by isolation and their inability to participate in many of the everyday activities enjoyed by their friends and peers. This often results in a growing lack of self-esteem and confidence which can become a barrier to future growth and development. Over The Wall’s residential programmes
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are designed to bring about transformational change to tackle these issues and to ensure our campers return home with a new sense of their abilities and ambitions, and feeling far less isolated. Who can come to camp? Health Challenge Camps Over The Wall invites applications from children aged 8 to 17 years, living in the UK, who are currently receiving treatment, or experiencing the difficulties of a serious health challenge. These include, (but are not limited to): blood disorders, physical disability (e.g. spinal injury), diabetes, gastrointestinal disorders, cancer and leukaemia, rheumatological conditions, immunological disorders (e.g. HIV, primary immune deficiency), respiratory disorders, skin conditions, severe allergies, heart conditions, kidney disease, neurological disorders (e.g. epilepsy, spina bifida) neuromuscular disorders (e.g. muscular dystrophy) and organ transplant.
CASE STUDY: MEET OTW CAMPER –
Megan
From the age of 11 years old, Megan had shown signs that she was developing issues with her balance and coordination. It was at the age of 13, when she slipped and broke her leg, that she was officially diagnosed with Friedreich’s Ataxia – a rare disease, causing damage to the nervous system, that eventually impacts movement and mobility. At the age of 15, Megan required a walking aid or a manual wheelchair for her mobility. Megan’s parents knew that this would cause her teenage years to be challenging and so her father looked for any available opportunities for her to integrate and interact socially with other children. It was then that he discovered Over The Wall’s camps. “Megan absolutely loved camp.” explains mum Louan. “She had always been a
confident child - but the limitations of her mobility had really set her back quite a bit. As a teenager, it is easy to become insular when facing the challenges Meg has had to face. She could quite easily say- ‘Well I can’t do that anymore, so I’ll just sit here, and I won’t go out, interact or do what others are doing.’” “It was after going to camp in the summer, that we noticed a difference. Meg definitely returned with a stronger sense of determination. Since camp, she clearly feels more confident in approaching the challenges that she is faced with.” “For example, we recently moved into a new house in a village. Since camp, she independently goes out in the chair on her own. She would never have had the confidence to do that before.”
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Sibling Camps Over The Wall invites applications from children aged 8 to 17 years who have a sibling who is currently receiving treatment, or experiencing the difficulties of a serious health challenge. Their unwell sibling does not need to be within the 8 to 17 year age group. Family Camps Over The Wall also hosts family camps and invites applications from families living in the UK who have a child with a serious health challenge. The child with the health challenge can be any age from 0-17; however, one child in the family should be within the 8 to 17 year age group. Experiencing Camp It was Megan’s first experience of the Family Camp that led her to go on to attend a Health Challenge Camp alone - an experience that allowed her to face new challenges and make lots of new friends. “When Meg attended Health Challenge camp, she climbed with the aid of a hoist,” said Louan,
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“When she reached the top – she was beaming with delight. Those experiences for her were so important as she is a very outdoorsy, active kid, so for her to achieve that was just brilliant.” “She also made so many friends at Health Challenge Camp, which she keeps in contact with on WhatsApp and Facebook. She came back full of stories about camp chats and the fun they had at the end of the day. To have friends who also have health challenges is very important. Many of her school friends are able bodied, so it is great for her to talk to others about the challenges that both she, and they, are facing.”
“The biggest change I have noticed since she returned in the summer, is that previously, the exercises she must do to maintain her strength were often put to one side. Now she has developed this wonderful sense of determination to stay stronger for longer. The doctors had said she would be in a power-chair by now, but she is nowhere near that.” “Megan wants to achieve more, and to be independent and I think camp helped her to feel like that- it has made her understand that she can do more than she ever thought she could.” To find out more about Over The Wall camp, go to www.otw.org.uk
WHY NOT VOLUNTEER FOR OVER THE WALL? Every year Over The Wall has around 800 volunteer places to fill to help facilitate camps across the UK - including both clinical and non-clinical volunteers. Participating at camp will provide you with a unique and unforgettable experience, allowing you to create new friendships and develop new skills, whilst making a positive impact on children’s lives.
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Buster FINDS HIS BEAT
AN AUTISM FRIENDLY STORY THAT ENCOURAGES EMPATHY, UNDERSTANDING AND KINDNESS
P
am Aculey is the mother of three boys - Walter 6, Stanley 3 and Hugo. Pam, is a children’s picture book author from Leicestershire and shares with us, her inspiration to write the ‘Just Like Me’ series of books. In 2017, Walter was diagnosed with Autistic Spectrum Disorder
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(ASD). He was four years old at the time and completely non-verbal. Our lines of communication were pretty much non-existent. Seeing Walter frustrated but not being able to tell you why was heart-breaking. We used pictures and visuals as our means of communication which has ingrained a love of books, words and
pictures. To this day you will hardly ever find Walter without a book in his hand. However, as parents we found it difficult to find diverse books where children, like Walter, could find themselves within the pages. They say “create the things you wish existed” so I started to write a children’s book series called ‘Just Like Me’ – where at the heart of each story we explore and promote diversity, inclusiveness, acceptance and kindness. Because we all know the world needs more of this! Children’s books can act like both mirrors and windows on the world. Mirrors in that they can reflect on children’s own lives and windows in that they can give children a chance to learn about someone else’s life. We are a multicultural family (I am Black Ghanaian and my husband Alex is white English) so all my books reflect the diverse melting pot of today’s society where children can learn about different cultures, traditions and abilities which will help to bring new life experiences and a deeper connection to others. 1 in 20 children have a disability. That gives 19 children a daily opportunity to learn about diversity, inclusion and friendship. Raising three dual heritage children with one who has additional needs has completely opened up my eyes to
the work that needs to be done in relation to representation. There are eight million disabled people in the UK, yet the children book’s we give our children come nowhere near to reflecting this. Books can serve as a first introduction to the outside world and they should be as diverse as the people who read them. There are more children’s books being sold in the UK than ever before – but how accurately do they represent the society we all live in? How many of your favourite picture books feature a disabled protagonist? I can’t name any. And when I say the word disabled, I don’t just refer to wheelchair bound. I also include those with motor disabilities, visual disabilities, learning/cognitive disabilities, neuro-diverse disabilities to name a few. Books have the power to change lives, so we owe it to young readers to show them reality in the books they’re reading. If all children could see people who looked like them doing amazing things; could you
imagine what that spark could do in their mind for their future? My first book from my ‘Just Like Me Series’ is called ‘Buster Finds His Beat’ and is all about a little boy with autism who gets scared of certain noises. Buster’s security comes in the form of his ear defenders – his way of turning down the volume and softening the world around him. It’s a heart-warming story that encourages children to be inclusive, empathetic, understanding and welcoming when they meet other children who are different to them. The story brings awareness of diversity, captures the magic of imagination and promotes
Adding diversity into a daily diet of stories will create a society where no one feels disadvantaged or restricted by their ethnicity, gender, background or disability
the importance of kindness. Walter really relates to the story so much and often say’s to me “Mummy I’m Buster”, which is so beautiful to hear, so powerful to see and just shows that when we see people like ourselves in the media, including fiction, we get a glimpse of who we might become and we feel validated. Books change lives and whether characters in the books we read reflect others or ourselves, what is important is connecting with them in ways that help us understand who we are today. Today’s young generation are tomorrow’s musicians, teachers, artists, doctors, engineers etc. We need to start young and ensure children accept disability as part of the norm. Adding diversity into their daily diet of stories will create a society where no one feels disadvantaged or restricted by their ethnicity, their gender, their background or their disability. Where we celebrate differences and the uniqueness of all children. Because every child should be able to say they’re a hero in their story. www.justlikemebooks.co.uk Instagram: @just_like_me_books Facebook: Just Like Me Picture Books Twitter: @likemestories
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The Disabled Living Supplier Directory provides information about companies and organisations that provide equipment, products and services to support disabled children, adults and older people. You’ll find the Supplier Directory on our website www.disabledliving.co.uk
It’s showtime! SAVE THE DATES FOR OUR FUTURE EVENTS... WALES & WEST Thursday 2nd July 2020 The International Conference Centre (ICC), Newport PLEASE CONSULT THE WEBSITE FOR UPDATES ON THIS EVENT
SCOTLAND Thursday 10th September 2020 Royal Highland Centre, Edinburgh BACK BY POPULAR DEMAND!
SOUTH Wednesday 30th September 2020 Farnborough International Exhibition & Conference Centre, Farnborough
NORTH Thursday 12th November 2020 EventCity, Manchester
MIDDLE
Thursday 18th March 2021 Ricoh Arena, Coventry
kidz ADULTZ
to
HERE’S THE EASY WAY TO FIND WHAT YOU ARE LOOKING FOR...
EVENTS
www.kidzexhibitions.co.uk 19
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Keeping you safe and warm
Your Gas Distribution Networks We are all committed to doing the right thing and we want our customers and their loved ones to stay safe and warm
Working to keep you safe in your own home When you care for a person with a condition such as Dementia or Autism it can often help to have extra measures in place to provide that extra peace of mind. The locking cooker valve can help them stay safe in their own home. This simple safety device will help a person living in a vulnerable situation retain their independence, and provide reassurance to family, friends and carers.
We can fit a locking cooker valve to the existing gas cooker pipework, contact us to apply for your free fitting. Helping our customers to stay in their own homes for longer.
Adapting our service to suit your needs When your gas supply is interrupted, we know it can be a very stressful time. It can be even more challenging when you have communication, access or safety needs. The Priority Services Register (PSR) is a free service shared between those companies who are responsible for delivering and supplying electricity and gas to your property/home.
The PSR helps us to support those who need it most. It ensures that you have access to additional support and in the event of a gas emergency you will get extra services tailored to meet your needs.
It’s really easy to join the PSR, totally free of charge and we can help signpost you to the relevant organisations.
Carbon Monoxide – the silent killer Faulty gas appliances can release Carbon Monoxide (CO) which is a colourless, odourless and tasteless gas, so it’s difficult to detect. Carbon monoxide is harmful and potentially fatal, so it’s important to know the signs and symptoms to look for.
Signs of CO to look for:
Gas flame appears ‘floppy’, burns orange rather than blue or your pilot light on your boiler frequently blows out.
Soot or yellow-brown staining on or around an appliance or you smell smoke.
CO poisoning symptoms include: Headaches
Nausea or feeling sick Breathlessness Dizziness Collapse
Loss of consciousness
If you spot any of the signs above call the National Gas Emergency Service on 0800 111 999* *All calls may be recorded and monitored.
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Working in partnership
We, as Gas Distribution Networks are all committed to doing the right thing, and we want our customers and their loved ones to stay safe and warm. As such we can all offer extra help, free of charge, to people who need priority support either temporarily or long term. We look after the gas networks across England, Scotland and Wales. Our pipes deliver gas safely and reliably to UK homes and businesses.
Visit energynetworks.org/ena/lno to find out how we can help.
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Charity Focus What is HIE? HIE stands for hypoxic-ischaemic encephalopathy, and put simply, is a lack of oxygen to the brain before, during, or shortly after labour (it can happen in older children too). This can cause injury, and the severity of this can vary greatly. HIE isn’t really that well known, but it affects 3-4 in every 1000 babies. Why did we start PEEPS? Sarah and Steve set up PEEPS in 2018 to raise awareness of HIE and provide support to parents and their children. Here, Sarah explains why they established PEEPS: “We found ourselves in the world of HIE when our daughter was born in March 2015 – she stopped breathing
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shortly after birth and, without any warning, our NICU journey began. Neither of us had heard of HIE before, none of our friends or family had, and to be honest, it was a scary time. I googled it (going against the advice of all the nurses of course!), and luckily found a Facebook forum for families. If it hadn’t been for that group and the advice and information offered by other mums and dads, I think Steve and I might still have been wondering what on earth was going on! So, we wanted to change things a bit, reach out to families in the early days, and bring the information to them, rather than them having to look for it.” Every HIE journey is going to be
different, but there can be similarities and celebrations, as well as the uncertainties and worrying times. What does PEEPS do? • Provide information – we have leaflets to share with NICUs, so that a family who are starting out on their journey have access to information and support. We can also provide “parent packs”, with some items which may help and offer a little comfort during those early days and weeks • Buddy support – if a HIE parent thinks it may be helpful to meet up with a mum or dad who has been through the same, or similar experience, then we can put them in touch with a “buddy” – we’ll even throw a coffee or two in for them! We understand meeting up, may feel a little too much for some people, so we also offer telephone and email contact • Counselling – PEEPS is run by parents, and whilst we are always happy to lend an ear, we are not trained professionals. If someone affected by HIE feels that they would benefit from speaking to a trained counsellor then we direct people for that support • Funding – this to help with accommodation or travel costs if a child is in hospital. In addition, PEEPS can also provide funding for equipment such as the Firefly Go to seats for older children who may need a bit of extra support It’s been great to grow as a charity over the last 18 months, working along-side other organisations and attending events such as the Kidz to Adultz exhibitions. For more information contact PEEPS info@peeps-hie.org or phone 0800 9875422 Website www.peeps-hie.org
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CALL THE
midwives HELEN, SUE AND THERESA ARE ALL QUALIFIED MIDWIVES WHO WORK IN THE MEDICAL NEGLIGENCE DEPARTMENT AT SLATER AND GORDON. THEY WORK CLOSELY WITH SLATER AND GORDON’S SPECIALIST LAWYERS AND USE THEIR SKILLS AND EXPERIENCE, FROM THEIR LONG SUCCESSFUL CAREERS, TO ASSESS NEW CASES AND PROVIDE ESSENTIAL ADVICE TO SLATER AND GORDON CLIENTS.
H
ere they talk about their experiences with midwifery and how that developed into their current roles. Where’s the strangest place you have delivered a baby? Sue: The strangest place I’ve delivered a baby is in a farmer’s field – the best natural birth I ever experienced, with no drugs needed. It was her first baby and she was progressing nicely with labour when she started getting the urge to push. I was calmly reassuring her that this was normal when she suddenly made a dash through the door and ran out of the maternity unit straight
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into the farmers field next door. I followed in hot pursuit with a pair of gloves and after scrambling over the fence found her lying in the grass pushing the baby out. Baby was fine apart from the surprised look on her face at landing on grass and Mum was laughing at what she had done. Thankfully we all missed the cow pats and we managed to walk back to the maternity unit with baby safely swaddled in my cardigan and tucked down mum’s nightie on her chest – we had really curious looks from people in the foyer when we came back into the unit. I was hoping that she would call the baby Daisy.
What’s the most awkward moment you’ve had when delivering a baby? Theresa: A time when I clearly said the wrong thing! I was looking after a couple that had a request for their caesarean birth. It was a planned caesarean section with no emergency so there was time for chit chat. During the time the doctors were setting up the theatre, the couple told me that they didn’t want anyone telling them the sex of the baby they just wanted the baby passing to them and they would look themselves as they had avoided finding out for nine months. I proceeded to pass this information to all the staff in the theatre and
was quite firm about making sure everyone had heard and understood the couple’s request. The caesarean section started and as it’s such a natural thing to say ‘it’s a boy or it’s a girl’, I got a little nervous and I started repeating to myself ‘don’t say the sex, don’t say the sex’. The doctor passed me the baby and I instantly saw it was a boy. Sticking to the couple’s strict instructions, I passed the baby to the parents and said ‘do you want to see what HE is’! Have you ever got the giggles when delivering a baby? Helen: A lady I looked after in the birth centre was having a pool
delivery and using entonox for pain relief. Every time she used it she said ‘pass me the equinox’ and burst out laughing throughout the whole contraction. Only to repeat this at the next contraction and so on. This carried on and became quite infectious. Her husband, the midwifery assistant and myself also had fits of the giggles during the contractions. So much so, we had to get the engineers in the check there were no problems with the gas cylinders and we weren’t all getting too much laughing gas! We all literally giggled throughout the whole labour and the baby was safely born by itself and swam to the surface
to his mum’s arms and was met by, yes you guessed it, lots of laughter and giggles. Afterwards I asked the lady about her birth experience and she said it was the best experience of her life. It wasn’t completely pain free but she didn’t find it as painful due to all the laughter and happiness in the room. It sounds a bit cliché but maybe laughter really is the best medicine! What’s the most difficult thing you’ve found about being a midwife? Helen: For me, it’s spending long stretches of time away from the family and working unsocial hours.
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Theresa Greenwood exhibiting her tyre changing skills on the way to deliver babies
Sue Austin with one of her deliveries
Christmastime is always difficult leaving the house and the children, especially when they were small, although I do love delivering Christmas babies. Theresa: One thing I find difficult about midwifery is not having all the answers and differing research which leaves you not always able to tell parents clear information. Sue: I’m with Helen on the shift work but for me it’s not having enough time to give women the care that they want and deserve. It’s very frustrating and some days I’d be home feeling disappointed that I hadn’t been able to do that. What do you love about your role as a midwife at Slater and Gordon Lawyers? Sue: Being able to use my clinical skills to help families understand the care that they received during the pregnancy, labour and birth. It also helps me give a balanced view on cases I look at as I know the story from both sides – as a midwife in the clinical setting and listening to families accounts of what happened during the birth of their baby when they contact us. Helen: I love bringing my medical knowledge together with the solicitors’ legal knowledge to make a formidable team! I enjoy delivering
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training sessions to the whole team which is also Helen Stanley, developing the newly qualified skills of our midwife in 1996… junior team members as it increases their knowledge and encourages them to be compassionate understanding lawyers of the future. Theresa: I love the variety which increases my theoretical knowledge as I get to review things that I wouldn’t normally encounter in practice. I also love that there are no night shifts! Have you got any interesting facts about yourselves? Theresa: I appeared in an ITV programme as a student midwife when pregnant with twins in the hospital I was training at. This was before ‘One Born Every Minute’. Sue: I live on a narrow boat so I can escape the busy city every day, and when I get bored with the view out of the window we just move on. Helen: I can’t spell caesarean and rely on spell check! When I qualified as a midwife in 1996 I was the youngest qualified midwife at the time aged 21 and 2 days.
…Helen Stanley 23 years later
Slater and Gordon know how devastating injuries concerning pregnancy and childbirth can be. In some cases, they can cause severe disability and lifelong effects. With many years’ experience in this specialist area of law, we understand the complex legal and medical issues involved in pursuing a childbirth negligence compensation claim. Crucially, our lawyers know the importance of supporting you and your family through this most difficult time. We’re sensitive to your needs, compassionate in understanding the challenges you face and dedicated to fighting your case. In short, Slater and Gordon ensure you receive the best support possible. If you attend any of the Kidz to Adultz events in the future, Sue, Theresa and/or Helen will be on our stand hosting a free midwife clinic. So, feel free to visit and discuss any concerns you may have about your antenatal care, labour and birth.
The importance of seeking legal advice for a cerebral palsy case When a child has suffered a negligent birth injury that’s led to a diagnosis of cerebral palsy, many people don’t see the importance of seeking legal advice. Sue Austin, midwife at Slater and Gordon Lawyers, talks about the case of Isacc* and how he advice his parents received.
As an in-house midwife at Slater and Gordon, I was on hand from the start to assist the family in recognising they had a case. We progressed with the case and although it took many years, we acheived a successful settlement when he was seven years old for a sum which allows him to have the best care he needs to live the best life he can.
“When Isacc was born he was struggling to breathe and the doctors didn’t notice straightaway. They took too long to expedite the birth and as a result, Isacc now suffers with cerebral palsy as well as a range of complications including epilepsy, respiratory issues, the inability to eat and he also had kidney failure. The doctors admitted that the birth hadn’t gone to plan and they hadn’t handled it as well as they should’ve done. He was two weeks old when Isacc’s parents decided to take legal action.
Since the settlement, the family have been able to adapt their house to include carer acommodation, a therapy room, a hydrotherapy pool, a better bedroom and a fully equipped bathroom for Isacc’s needs. This case is an example of just how important it is to get legal advice as soon as possible from lawyers who specialise in medical negligence cases, in order to secure aids and equipment to assist in a child’s development and ensure a better quality of life. We understand that dealing with we’re here to support you and to take away the stress so you can concentrate on caring for your child.”
Sue Austin, Midwife His parents were overwhelmed by the support we were able to provide to help them with all the necessary aids and equipment for their son.
Our specialist midwives have many years’ experience in midwifery and also in working alongside our expert medical negligence lawyers. If you think you have a case for negligence, contact our specialists for advice as soon as possible. Call us on 0330 013 6951 www.slatergordon.co.uk
Free midwife clinic
If you’re concerned about a birth injury or your child’s development issues, speak to one of our midwives for expert advice. Monday 18–Friday 22 May 2020 Click here to book your telephone appointment
Authorised and Regulated by the Solicitors Regulation Authority.
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Ambito
EDUCATION
AT AMBITO EDUCATION, WE EMPOWER THE INDEPENDENCE OF YOUR LOVED ONES.
W
e believe that the young people and adults that we support living with: physical disabilities, learning disabilities, complex health needs and cerebral palsy are truly capable of achieving the extraordinary. That’s why we not only teach, but inspire and guide the young people we support to embrace challenges and discover new strengths. Your loved ones will be supported within our highly specialised provisions to develop their independence. We work with you and their representatives to understand their individual needs and deliver individual personcentred support plans. Together we provide a uniquely tailored approach to support each individual to achieve their aspirations and potential. At Ambito Education we provide a variety of support across our services: • Walton Nursery: An inclusive nursery supporting children ages 0-11 to develop their creativity, individuality and self-confidence.
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• Ingfield Manor: A residential School of Excellence for Conductive Education, supporting young people aged 3-19 who are living with complex neurological motor impairments such as cerebral palsy. • Ingfield Manor School for Parents: A specialist service for families of children with cerebral palsy and other motor learning difficulties. • Craig-y-Parc School: A specialist School supporting children and young people aged 5-19 years old, living with physical disabilities, sensory impairment, complex medical needs and severe, profound or multiple learning disabilities. • Ty Cwtch Children’s home: Highly specialised residential children’s home providing both individual residential placements and dual placements with Craig-Y-Parc School. At our FE provision in Lancaster, Beaumont College, we understand that the needs of the young people we support aged 18-25, living with physical and learning disabilities are individually unique. We encourage the people who know best to take responsibility of their learning - the students. We provide five pathways that are assigned on holistic assessment, each path ensures that our young people and adults make a smooth transition into living more independently as adults. We provide your loved ones with the same level of dedicated, stimulating and empathetic support that we would want our families to receive. So, get in touch today by phone or email and find out how we can help you: enquiries@ambitoeducation.co.uk 01753 255777
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TALKING ABOUT
sex education
FOR CHILDREN AND YOUNG PEOPLE WHO HAVE ADDITIONAL LEARNING NEEDS
Fiona Boorman is a paediatric continence nurse and former special school nurse. Fiona works with the BBUK team at Disabled Living. Fiona, found she was able to explain and demonstrate ‘embarrassing’ body events in a way both families and pupils could understand, to help demystify and promote healthy living. This opened the door to becoming very involved in health, puberty, sex and relationships education too. This is a subject which historically people commonly ignored because it proves difficult to talk about for many reasons, such as • Fear of how to broach it and what level to pitch the information at. • Fear of opening a ‘can of worms’, encouraging experimentation or maybe even starting a new obsession in some young people. Parents and carers may feel that the child will not require the information• they will never be able to experience sexual feelings. • they will always need 24 hour care so will not be alone. • they will always remain as a child and they would not be able to become pregnant. Let’s look at these ideas There are a very small number of conditions in which the young person will not experience hormonal and bodily changes as they progress through puberty. With some children
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these changes occur even earlier than for their peers. For a child who is unable to question what is happening to their body and emotions, or access information on the internet as their neuro typical peers might, these changes may well produce fear, as they are unsure what is happening to them. They may become more isolated and sometimes depressed. Even a child who struggles with social contact may change over time, it is important to help them to prepare for appropriate contact, particularly to learn what is acceptable behavior for themselves and others. Sexual experimentation often starts with our own bodies, it is good to help these children to understand what behavior is acceptable in
the society they live in, to learn what can be done and where. They need reassurance to comprehend the urges and feelings that they experience as a normal part of maturing. Many parents of children with disabilities, may view their child as unlikely to become an adult, imagining them as perpetually dependent and ‘childlike’, they may be protective and not wanting them to grow up. Unfortunately, since the demise of the crystal ball, most of us are unable to give accurate predictions of the future and reality generally turns out to be little like we thought. It is a common misconception that girls with a learning disability are unlikely to become pregnant. The vast majority have fully
functioning sexual organs and without appropriate education are more at risk of allowing sexual contact through ignorance or abusive contact. At one time these young women were put on the ‘pill’ as routine to prevent unwanted pregnancy, currently contraception is normally prescribed after a more individual risk assessment, discussion with the family and an appropriate chat with the woman herself. However, contraceptive medication does not prevent sexually transmitted disease and the trauma of abuse. Another misconception is that a young person will never be alone, they maybe in need of 24-hour supervision/care, so they will be prevented from having sexual contact. We are not keeping that child protected from abuse by ‘carers’ or as is sometimes a problem – other clients in care settings. Parents have also told me that they will always look after their child – we live in an era of change, life expectancies of those with disabilities are greatly improved, this may not happen. So why accept the challenge of Sex Education? • To help the child understand their body/emotional changes i.e. periods, breast development, body changes, ‘wet dreams’, masturbation, voice changes, attraction, lust and so much more • To provide a safe environment for them to explore their own bodies • To make them safer from others • To keep others safe from their unwanted approaches • To help in understanding boundaries/appropriate behavior • To enable reporting of undesirable body changes, such as lumps, rashes or infections Selecting children for lessons I was previously a special school nurse, working with youngsters who had severe or profound and multiple learning disabilities. This was one lesson where we decided to educate them within mixed sex groups
with similar cognitive abilities. Our experience was that some needed shorter sessions due to concentration span, it was a struggle to achieve the learning outcomes we proposed, we needed more sessions. Preparation We started by ensuring the learners understood the differences between sexes and ages. I cut pictures of people out of magazines/catalogues, asked the children to group them according to apparent sex and then into age order. We chatted about what ages body changes had happened to those people. This helps you to gauge their understanding. I used a basket of washing to help discussion about why we wear clothing. Prompting talk about selfcare, spots and smells! We talked very openly with the youngsters about which body parts they and their family members possessed, with interesting outcomes, including one child reporting his sister had a penis – she kept it in a drawer! We asked the children to comment on who they are safe to have these conversations with. Terminology Another early session was around our alternative names for body parts, many unrepeatable, but we decided to use the correct words, as a universal language that would be useful if they needed to report to a healthcare professional i.e. penis, breast, vagina. Safe touch Staff identified this as an area for work, students struggled with personal space, so we tried this as a role play, to see how close the children thought made them feel comfortable. In teams we made full size bodies, cut from paper (Draw around child lying on a piece of paper roll-cut the body shape out) the learners decided who the person represented e.g. my mum, friend, teacher, policeman. The children then painted on in red (no
touch) or green (can touch) orange (maybe) the areas they believe were safe. I have since tried this with red/ green/orange paper with double sided tape on the rear, the children stuck this to their own clothing or their friends. This approach can be used with touching animals, electrical equipment, items in a shop and more. Visual learning Children in mainstream schools are often taught about ‘Sex, puberty, relationships’, using video of cartoon characters or drawn people- to keep things ‘decent’. Sadly, many children with learning issues, appear unable to equate cartoon bodies with their own, managing better with photographs and sometimes models. To this end, I made felt body parts which I could hold against myself when leading the groups, to show the learners where the relevant parts were situated and their purpose.
A young lady with cerebral palsy admitted she could not abduct her legs and had no idea what her vaginal area looked like; I was able to demonstrate with my rather generic models! They have also proved useful when teaching bottom wiping skills- how can a child do that, if they don’t know where they are trying to wipe? Downloading suitable materials is a minefield to be negotiated- due to the fine line between education and pornography. But the information needs to be presented in a way that the child can access and comprehend, in order to teach the safety that is needed.
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Pornography Another issue that often affects families with learning disabled young people is how to regulate access to internet content. Several times I have come across youngsters being urged to access unsuitable online sites, by their peers (more common in mixed ability schooling) and having difficulty processing what they are viewing. This may be seen as amusing to more able children, or viewed as grooming. • It is important that parents, carers and staff maintain open dialogue with the child, • encouraging sharing of online content with their care providers, • holding non-judgmental discussion and • keeping access to computers and tablets in the family areas- rather than hidden away in bedrooms. ‘Parental controls’ can also be applied to online content to ensure it is suitable for the whole family. • Log on to internet provider or set on Google safe search Consent This is a concept that the young person may need help with. Showing
ways that we give permission like smiling, nodding, allowing things to happen to us, going to venues, accepting gifts, it is not all about saying ‘yes’. Also, ways we can say ‘no’, shaking our heads, turning away, frowning, pushing people away, putting our arms around ourselves and head down, shouting ‘no’ or leaving. Encourage the young person to practice these in context, ‘can I have one of your sweets?’ ‘do you want to stroke my dog?’ ‘can I touch your hair?’. Help them to interpret nonverbal messages, this is a challenge for many. It is helpful to use role play, to teach them how to respond to invasion of their personal space and how to alert others to unwanted approaches and how to recognize lack of consent in others. Stranger danger We often use this phrase with children, but we need to know who they see as strangers. I cut out many photos of people familiar or not and found that my learners often perceived them all as friendsnone as strangers, even famous footballers, pop stars and a friendly
looking vicar. The general rules of this type of education – probably all education, is to establish the current understanding of your audience as individuals, before you can go on to enable their learning. Make sure you are using materials that they can comprehend, keep going back to ensure they have got the point, before moving on. For children with limited understanding or a literal approach, covering a banana with a condom is inappropriate - that will not prevent pregnancy! They need to practice applying it on a model then see it in place on a human photograph. Sex and relationships education is so important to all young people, it is vital that we help them to practice their life skills safely, by really doing the ground work well. This is merely a brief introduction, but I hope it will spark thought and discussion to the benefit of our children, who I feel are often very lost in a mainstream sex education class - not a place where you submit yourself to ridicule by admitting you don’t understand.
UES S IS E R U T U F E H T S IS M ’T DON E IN Z A G A M Z T L U D A O T Z ID OF K
Just visit...
www.kidzexhibitions.co.uk 38
kidz ADULTZ
to
As well as being distributed at each of the Kidz to Adultz shows, you’ll find each new issue online, so you can always keep up to date with what’s new and read all the interesting articles.
MAGAZINE ISSUE 7 / MAY
2020
IN THIS ISSUE...
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39
THE WORD
‘independence’ TERRIFIED ME
NAMED AS ONE OF THE MOST INFLUENTIAL DISABLED PEOPLE IN THE UK IN 2018, ELIN WILLIAMS IS THE 21-YEAROLD WELSH GIRL BEHIND THE AWARDWINNING DISABILITY & LIFESTYLE BLOG, MY BLURRED WORLD.
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E
lin was diagnosed with a degenerative eye condition, Retinitis Pigmentosa, when she was 6 years old and was registered blind/severely sight impaired at the age of 12. When I was younger, the word ‘independence’ terrified me. I was diagnosed with a degenerative eye condition called Retinitis Pigmentosa when I was six years old, three years after the initial symptoms manifested in my life. I was finding it difficult to adjust to my increasingly blurry world. Something my mobility officer at the time suggested might help to ease the anxiety I felt when walking around on my own was to learn to use the white cane. I was eight years old at this point and my diagnosis was still raw, as I didn’t necessarily understand what it meant for me yet. I gave the cane a go, walking with it in my hand around my local village. I soon realised, I didn’t want to entertain the concept at the time and so, folded it up and slotted it into a box in the corner of my room alongside some magnifiers that didn’t prove useful anymore. I made a reluctant effort to dig it out every once in a while, flirting with the idea of learning to use it again, but my cane never made it past the threshold to the outside world. It was suggested to me numerous times when I was in secondary school, I should consider the prospect of using a cane as my vision deteriorated but I felt too selfconscious. Introducing a mobility aid to my life only seemed to fuel some kind of hatred towards my disability. I was desperately trying to fit in and so, found myself neglecting any kind of aid that I thought made me stand out. I convinced myself I didn’t need it, when, in reality, I really did. Neglect, frustration and anger camouflaged every positive attribute the cane could bring to my life and I was adamant that I could be independent without it. But as my world blurred and faded a little more, one thing became clear; If I wanted to become fully independent one day, I couldn’t do it alone. And that’s when I decided to reintroduce the white cane into my life.
I was introduced to a new mobility officer when I was 16 and she somehow managed to instill a new kind of confidence in me. An order was placed for a new cane since the one that inhabited the now dust covered box was evidently too short for me at this point. With my mobility officer by my side, I decided to see what it was all about – again. We went out into public, venturing only to quiet local spots to begin with so I could become familiar with the concept again and, to my surprise, I was still accustomed with some of the techniques - I must not have erased the idea and the skill completely from my mind after all! A few lessons in and I eventually found myself in the town centre. Feeling self-conscious to begin with as I weaved in-between residents and tourists, thinking that they were staring, judging and forming new misconceptions and stereotypes as I passed by. But, as soon as I adopted the mindset that, even if people were staring, I couldn’t see them anyway, I slowly managed to focus on my own path and learn to embrace the mobility aid I had in my hand. I eventually realised, my cane was adding a lot more to my life than it was taking away from it. Despite the fact that I was growing in confidence when using my cane and I didn’t tie the concept of using it with a feeling of complete dread anymore, finding independence still proved challenging, especially when travelling on public transport since I had a number of bad experiences to report on from the past. But I resolved to seek support at the time I needed it most.
Neglect, frustration and anger camouflaged every positive attribute the cane could bring to my life and I was adamant that I could be independent without it.
I talked through my anxieties and fears with a sight loss counsellor who helped me to untangle some of the most daunting worries in my mind. This was a turning point for me as I’d never been so honest with myself (never mind anyone else) about what I found terrifying about finding independence as a vision impaired person. It was a relief to talk through my feelings in this way, and it helped to guide me on my journey to independence. The bubbles of doubt that formed over the years slowly began to burst, not leaving as much anxiety inducing residue behind. I started to recognise the value in my mobility aid and the freedom it enabled me to have. I can’t deny, these feelings of anxiety and doubt still permeate my thoughts from time to time, especially when travelling on my own and anxiously anticipating whether or not my assistance will turn up on the other side or not. But I’m further ahead on my journey to independence than I ever imagined myself to be. Now, if I experience a flutter of doubt, I think back to each outing without my cane, the ones which were punctuated with bumps, crashes and falls. With every bump knocking another ounce of confidence out of me, and I’m realising how rare these incidents occur now as I have my cane to hand. Talking through my feelings and getting in touch with other disabled people allowed me to realise, I’m not alone and there are ways around achieving the things that you once deemed impossible. I now travel independently on trains on a regular basis, venturing as far as Buxton, Manchester and Milton Keynes on my own - all of which are 2 or 3+ hour journeys for me. Finding independence as a disabled person can be difficult but, I can now say from experience, it’s not impossible. The mobility aid that I once believed didn’t serve a purpose in my life has transformed it completely, I only wish that I acknowledged the benefits sooner. Read more about Elin Williams : https://myblurredworld.com/about/
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*
FIRST SESSION IS FREE
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The Sensurround Experience A safe multi-sensory space offering a private environment where senses can be developed and explored for both adults and children with special needs. Suitable for groups or individuals.
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Disabled
LIVING
THIS IS WHO WE ARE AND WHAT WE DO…. DISABLED LIVING
A charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz exhibitions. www.disabledliving.co.uk
EQUIPZ
The team comprises occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses and continence specialists. We respond to enquiries via our helpline and website. Some people opt to visit the Disabled Living Centre based in Manchester for a free equipment assessment. Helpline: 0161 607 8200
BLADDER & BOWEL UK
The team provide information and advice for children, young people and adults with Bladder & Bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources. Helpline: 0161 607 8219 www.bbuk.org.uk
KIDZ TO ADULTZ EXHIBITIONS
We organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them, with over 100 exhibitors at each event. We currently deliver deliver 5 events nationally in Coventry, Farnborough, Newport, Edinburgh and Manchester. www.kidzexhibitions.co.uk
TRAINING
We run a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK. www.disabledliving.co.uk/training
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Employing your own care and support Employing your own personal assistants gives children and their parents choice and control about how they’re supported. Our free, online toolkit can help you get started. ‘Employing personal assistants’ toolkit This toolkit has step by step advice to help you hire your own personal assistants. It’s available online or you can email marketing@skillsforcare.org.uk for a paper copy.
Individual employer funding There’s also funding to pay for training to help you hire your own personal assistants and to train them. Find out more at www.skillsforcare.org.uk/iefunding.
www.employingpersonalassistants.co.uk
