kidz
to
ADULTZ
MAGAZINE
ISSUE 5 / NOVEMBER 2019
Win!
IN THIS ISSUE... JAMES FINDS HIS VOICE EHCP – 5 TOP TIPS MAKING THE CASE FOR YOGA
A family fun day out with hotel accommodation and meals!
TEENAGERS DREAM FOR LITTLE BROTHER CAN’T FIND IT? MAKE IT YOURSELF!
2
Welcome!
WELCOME TO THE LATEST ISSUE OF OUR MAGAZINE
I
t’s a year now since we launched the Kidz to Adultz magazine and we are delighted to say that it has been received very well. During the past 12 months we have carried some really interesting and useful content and we would like to say a big thank you to everyone who has contributed so far. In this issue we have a wide range of articles and information, from a look at accessible holiday attractions, the best way to manage the EHCP process, advice for handwashing and bathing and lots more. We are always keen to hear what you think, please feel free to get in touch with your suggestions for future issues. If you do have a story that you would like to tell us all about for the next issue, which will appear in March, then please contact us by email at magazine@disabledliving.co.uk. Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz
CONTENTS... Out and about – holiday ideas.........................8 IT challenge success......... 12 3D orthotics advance....... 14 Targeted training.............. 18 Smashing barriers............ 24 EHCP – 5 top tips............... 26 Washing and bathing advice................... 32 DIY products...................... 34 Communications dream.. 36 Autism explained.............. 38 James finds his voice....... 44
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 607 8200 or email us at magazine@disabledliving.co.uk Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester, M28 2LY
3
don’t know
US YET?
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 of 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 AND BOWEL UK
The team provide information and advice for children, young people and adults with Bladder and 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 4 events nationally in Farnborough, Bristol, Coventry 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
4
carebase
The Base
supporting people
A safer space for all • • • • • • • •
3995
ly £ m on
fro
Stable frame Any colours and sizes available FREE on site assessments Windows and blinds as options Bed and mattress choices Easy clean Floor or wall mounted Music and lighting available
www.carebase.net/haven/base Tel 01609 785360
Snug Creating a safer environment • • • • • • • •
A unique cot design Very robust construction Door height options from 80cm - 140cm Colour choices Exceptional value Home assessments available Cut out for close care and hoist accessibilty Low entry - height adjustment from 25-80cm
Check out the website for more details - www.carebase.net/cots/snug Tel: 01609 785360 info@carebase.net 5
n!
Wi
WIN A FAMILY FUN DAY OUT
WITH HOTEL ACCOMMODATION AND MEALS
courtesy of Quest
QUEST IS INVITING ONE LUCKY WINNER OF THIS COMPETITION TO GET OUTDOORS, GET CYCLING AND HAVE A FAMILY NIGHT AWAY
T
he winning family will travel to the beautiful town of Shewsbury, where Quest, a leading supplier of therapy and mobility products, will arrange for them to visit the Quest Hub. The Hub provides adaptive recreation equipment for people of all ages and abilities - from children’s therapy trikes, to motorised hand cycles and everything in-between. Once all the family are ‘kitted’ out
with cycles, they can enjoy a truly inclusive family afternoon as they get ‘out with nature’ in Shrewsbury’s picturesque park, ‘The Quarry’. Following an energetic afternoon Quest will then arrange for a family of up to four people, to have a relaxing evening in a local hotel with evening meal and breakfast the following morning. Quest is a leading supplier of therapy and mobility products. The
team are rehab specialists for Hase and ICE and can provide test-rides for a wide range of handcycles, recumbent 3-wheelers, Running Bikes and tandems.
To enter, simply email cycling@quest88.com with the subject line HUB COMP by Tuesday December 31st 2019.
Terms & Conditions Competition prize must be redeemed by 1st May 2020, Total prize Value £750. Limited to 1 entry per person over the age of 18. Competition prize is not transferable.
6
7
Out and about…
SPOTLIGHT ON THE FYLDE COAST
WITH PLENTY OF SEA, SANDS AND BEAUTIFUL SCENERY, THE FYLDE COAST IS A BEAUTIFUL PLACE TO VISIT FOR FUN-FILLED, ACTIONPACKED STAYS, THEATRE TRIPS, WONDERFUL WALKS ALONG UNSPOILT COASTLINES OR DAYS ON AWARD-WINNING BEACHES
A
nd, for visitors with a physical or sensory disability, mental health or learning difficulties, the Fylde Coast has plenty of accessible venues, attractions, changing rooms and toilets, catering extremely well for people with disabilities, families and the elderly alike.
8
And now thanks to Access Fylde Coast, Blackpool, Fylde and Wyre are fast becoming even more accessible destinations for everyone to have amazing experiences and make unforgettable memories. This pioneering project, which was launched in April, is helping businesses with free access
guides to enhance their shopping, accommodation or attraction. It’s also giving free disability awareness training to businesses and their employees to ensure that everyone has the right attitude to disabilities and provides the warmest of welcomes to all visitors. Rachel Ryan, of Access Fylde Coast,
says: “It really is a game changer for ensuring people with disabilities – whether visible or hidden – feel welcome on the Fylde Coast.” “It is already a highly accessible destination, but we’re hoping to improve on that, by helping businesses understand the barriers faced by customers with physical, sensory, mental health and learning difficulties so that whether making small adaptations to their premises or having a positive attitude to disabled customers, all visitors to the Fylde Coast are catered for incredibly well. We’ve had great feedback from businesses, who have taken up our offer with positive results, which is fabulous for disabled visitors and their families.”
It is already a highly accessible destination, but we’re hoping to improve on that, by helping businesses understand the barriers faced by customers
Businesses who have taken part in training and an access guide will display a logo so that customers know they have taken steps to offer a warm welcome to disabled people. Ms Ryan adds: “We hope to play a significant part in positively pushing for change and start making big waves in accessibility by raising awareness with businesses in the tourism sector across the Fylde Coast. We are starting in the North West of England and we hope this project is the beacon for which the rest of the UK can follow.” Visitors can also use the Blackpool Transport App, which Access Fylde Coast has enhanced with British Sign Language videos and Easy Read format and through partnership
with AccessAble (www.accessable. co.uk), visitors can now plan their trip by finding how accessible cafes, shops, restaurants, attractions and accommodation are before they arrive. Just a few of the accessible attractions across the Fylde Coast include: • The Sandcastle Waterpark, Blackpool – This attraction includes a Changing Places and a quiet room for autistic adults and children. •
Blackpool Tower – The iconic Blackpool Tower has an array of procedures in place to aid visitors and a Changing Places.
•
Blackpool Zoo – Fullyaccessible with disabled toilets.buddy
•
Blackpool Grand Theatre – The historic theatre, which in the past hosted the likes of Thora Hird and Ken Dodd, is a great place to catch a show in an accessible theatre.
FLEETWOOD • Marine Hall and Gardens – Historic building, which has been host to the likes of the Beatles and Charlie Cairoli, and attractive gardens.
LYTHAM/ST ANNE’S • Lytham Hall – The finest Georgian house in Lancashire and once the ancestral home of the colourful Clifton family with national significance. •
Lowther Pavilion – Set in the beautiful 13-acre Lowther Gardens with bandstand, the pavilion has hosted performances from Fleetwood Mac to Jason Manford.
Work is also continuing to bring beach wheelchairs to the Fylde Coast. Appreciating that some disabled people travel alone, Access Fylde Coast also offers ‘Book A Buddy’ service to enable people to make the most of their stay on the Fylde Coast accompanied by a friendly volunteer to Access Fylde Coast’s events, as well as trips to the theatre and cinema. The project, which was launched in April 2019, thanks to a near £1million cash injection from the Coastal Communities Fund, was thrust into the spotlight after it successfully enhanced Lytham Festival with a British Sign Language translator and flew in ILL-Abilities, an international dance crew of differently-abled dancers. Among the fully-inclusive events that it has successfully hosted
Comedian Aaron Simmonds performed at a comedy night, just one of the fully inclusive events on offer
9
are the British Paraorchestra at Blackpool’s famous Winter Gardens – which was the first time in the prestigious theatre’s history that it had conducted a pre-performance touch tour for blind and visually impaired people. A member of the VI Forum, a support group for blind and partiallysighted people in Lancashire, says: “Simply the most inclusive, inspiring and thought-provoking event ever and the touch tour and audio description of the performance was outstanding.” It’s successful events were followed up with a comedy evening featuring Britain’s Got Talent Robert White together with Aaron Simmonds and Jamie MacDonald – hoping to help breakdown the misconceptions of disability. Says Aaron, who suffers from cerebral palsy: “It was a privilege to take part in this event. Not only was it super fun, but to be a part of something that is trying to increase awareness about the lack of accessibility for both audiences and performers is something I believe in hugely.” Adds Rachel: “The response from providing BSL at Lytham Festival, which featured top artists including Kylie Minogue, providing specially adapted bikes for disabled people and their families to ride Blackpool Illuminations, to offering a fully-inclusive event with the Paraorchestra has been incredibly positive – we’ve been contacted by people moved to tears about what a difference it has made to them to feel fully-included and it is starting to catch on. At the end of September, a brand-new food, art and music event ensured good access and BSL to make it fully-inclusive and so the word is getting out there about how important it is.” The Fylde Coast is already proving a big hit with disabled visitors and their families too. Jane Carver and Gillian Scotford, from Derbyshire, have six children between them, three of whom are severely disabled, and know all too well the challenges
10
International dance group ILL-Abilities performed at the Lytham Festival where they hosted a workshop
faced when it comes to an accessible holiday or short break away. “Finding a destination that is suitable for a family who have access needs is extremely difficult, in fact, it's a nightmare,” says Jane. But as Gillian says: “There are loads of accessible gems in the Fylde Coast but this project will actually bring everything together for people to be able to search for all those things that are important for a successful day out or a successful holiday”.
“We absolutely love Blackpool and we cannot wait to visit and see all the things that the Access Fylde Coast project brings.” For more information on the project and events planned for 2020, visit www.accessfyldecoast.org The Blackpool Transport app is available to download for free from Google Play and Apple store.
Custom designed, safe, living spaces and beds for people with complex needs.
Versatile, strong environments for safe sleep and relaxation. Ideal for high or low sensory use and the promotion of behaviour self management. Regularly funded through the DFG.
All our products are custom designed and made to meet the needs of individual or multiple users.
Home At Keeping Families Together
Schools In Strong, comfortable and safe high sided beds designed to meet varying nursing needs. Can be used with hoist.
Supporting Inclusion
I
ospital s nH Enabling Treatment for Acute Conditions
Quick assembly safe travel beds for holidays, respite & trips away from home.
Visit our website for our full product range Contact our expert team for purchase, rental and funding options. Call 01706 816274 or email info@safespaces.co.uk
SAFESPACES.CO.UK
Jamie and Ben with their certificates
DERWEN COLLEGE TOP TECHIES TAKE ON IT CHALLENGE
T
wo talented computer whizzes from Shropshire’s Derwen College competed at the national IT Challenge recently. Students Jamie Bullock and Ben Moore-Hill represented the specialist further education college near Oswestry in the three-day ShawTrust UK IT Challenge. The event saw more than 50 competitors with learning difficulties and disabilities take on a variety of IT challenges to test ability, creativity and skill using different computer programmes.
12
Challenges included designing a poster in PowerPoint, retrieving specific information from the internet and showing off abilities in Excel. Jamie and Ben were a credit to the college, receiving certificates and medals for their knowledge and hard work. Jamie was also awarded with a Kindle Fire for his excellent public speaking and willingness to ask searching questions. Derwen College staff Zoe Wood and Emma Dodd accompanied the students on the three-day challenge. Derwen College, in Gobowen,
Shropshire, is a specialist college for young adults with special educational needs and disabilities (SEND). The college offers students the opportunity to learn new skills in real work environments and to learn life skills which will enable them to live as independently as possible. The college has received three consecutive ‘outstanding’ Ofsted gradings. For more information go to www.derwen.ac.uk
Swifty Pushchair Suppliers of specialised pushchairs, car seats and seating systems Email: info@tendercareltd.com Phone: 01903 726161 Website: www.tendercareltd.com
3D TECHNOLOGY
forging the future
FOR ORTHOTICS
SAMIYA PARVEZ KNOWS ONLY TOO WELL HOW HARD LIFE IS FOR FAMILIES WITH DISABLED CHILDREN. IN 2002 HER SON DIAMO WAS BORN WITH COMPLICATIONS THAT LEFT HIM WITH CEREBRAL PALSY
S
he doesn’t like to dwell on what happened, but rather focuses on the short time she and her husband had with their son and the joy he brought before he passed away unexpectedly, age 9. She doesn’t pretend that life was easy - far from it. As a quadriplegic, Diamo had significant complexities and challenges. None more so than monthly appointments for orthoses to help manage his posture and pain.
14
Samiya remembers endless appointments to the orthotists, multiple casts taken for orthoses that were so often poorly fitting or didn’t fit at all – and the time it took to get them – constant trips to and fro to make adjustments. She says that many of these experiences were negative and created huge anxiety for Diamo which impacted on the whole family. Not least in having to take time off work which
led to Samiya giving up her career to become Diamo’s full time carer until he passed in 2012. Fast forward 5 years and the story is one of hope and optimism. Samiya and her husband Naveed have big aspirations to disrupt the health inadequacies they experienced firsthand. They are paving the way for positive experiences for families, and they believe technology provides the answer.
In 2014 they founded Andiamo, a company in their son’s name, which uses pioneering and innovative design technology to create medical wearables, starting with orthoses. Samiya told us: “Naveed and I know only too well what children like Diamo have to go through. We see a huge opportunity through Andiamo to develop a software platform that will transform the way orthoses are produced in the future and make families’ lives better. That’s our mission.” She adds: “Using innovate design, 3D scanning and 3D printing, we are able to produce lighter orthoses that fit first time. The outcomes are life changing for children and families who currently endure multiple appointments to clinics, poor quality and fit orthoses and ultimately have to bear a system that simply isn't good enough.” Andiamo has launched a new Clinic which it hopes will pave a new way for children and families. “I’m particularly excited that we have set up our own clinic in London where we are already seeing children needing AFOs (Ankle Foot Orthoses) and the outcomes speak for themselves,” says Samiya. One happy Andiamo family includes 14-year-old Tom who has been wearing Andiamo AFOs for about 6 months now. He says he hardly even thinks about them, they’re lighter weight, he sweats less in them and they fit so well he can just join in things at school without feeling different. “I’m adamant our clinic supports families, not just the child,” Samiya explains. “I want the whole experience from start to finish to be positive and the Andiamo clinic will reflect that in both it’s service and the quality of orthoses we provide. Children come for one assessment consultation and within weeks they come for their fitting session. And that’s it - until they’ve outgrown them. We have an amazing team working for us, combining the expertise and knowledge of our Orthotists with the skills and passion of our design and data teams.”
Using innovate design, 3D scanning and 3D printing, we are able to produce lighter orthoses that fit first time
Andiamo is working in collaboration with two of London’s leading hospitals to perfect their techniques and has plans to move into other areas of orthoses soon.
Samiya says “We’re so excited to be able to take something positive out of our own experiences and that’s what Andiamo is all about. Everyone who works with us is as passionate about our mission as we are. We’re looking forward to launching the clinic this autumn but we are ready to see as many children as we can help right now. The clinic is private and the orthoses aren’t yet available on the NHS but let’s hope that one day that will change. We’ll keep fighting to help make a better life for all of the Diamos in the world.” For more information, visit www.andiamoclinic.com
15
‘WHAT WILL THIS EQUIPMENT
DO FOR MY CHILD?’
AN OBJECTIVE ANALYSIS OF CHILDREN’S AND PARENTS’ EXPERIENCES OF USING THE MOLLII SUIT
I
ngenious technology can produce many wonderful products and services supported by clinical studies with objective statistical results. But what are any of them like to live with day after day? A recent study* analysed the experiences of 6 children with cerebral palsy using the Mollii Suit for 3 months and their parents’ views too. It showed the children all experienced a positive impact on their body in some activities and participation and parents noticed improvements as well. Children’s self-image improved with comments such as ‘feeling like a superhero’. They also reported pain relief from using the Suit which parents noticed had improved their sleep. Both groups found Mollii was as good or better than the usual injections to treat spasticity and was more consistently effective. The Mollii Suit’s electrical stimulation induces a user’s nervous system to be able to move and control their body better, helping longer-term improvements too. Developed in Sweden from 2009, the Suit is used for children as well as adults with a variety of neurological conditions such as cerebral palsy, stroke and brain injury. The effect is to adjust muscle imbalances and alleviate motor disorders, enabling easier and more controlled movement for life every day. Each user is individually assessed by a Mollii therapist to provide their own personal stimulation programme and test it out for one hour’s session initially. In the study* by Lulea University of Technology, Sweden, children between 5 and 10 years old with cerebral palsy (GMFCS I or II) and their parents were interviewed. Informed consent was given by both the children and parents.
16
SELF-IMAGE Some children reported feeling like a ‘superhero’ wearing the Suit with one proudly sending a selfie-photo to friends of him wearing it. They also reported finding it a bit tight and some mentioned it was a little difficult to put on and off but all showed good compliance with wearing the Suit every other day as intended. Parents’ opinions supported these experiences while several mentioned concern the Suit would enhance the image of their child being different at an age where fitting in with peers is important. DIFFERENCES NOTICED Most children talked about being stronger and more able to participate in activities. Parents noticed the same and that their child could maintain a sitting posture more easily. Pain reduction was noticed by parents and their child’s improved sleep, allowing parents own sleep to be less interrupted. Children described their increased ability in leisure or sports activities such as swimming, running or floor-ball etc. COMPARISONS WITH BOTOX INJECTIONS Children and parents highlighted the discomfort of regular Botox injections and the process involved. All parents described their child’s condition after using the Mollii Suit was more stable or improved by comparison with Botox although they commented it required some effort to use the Suit every other day. Parents also noticed that using the Suit did not lead to the expected deterioration that occurs as Botox wears off. This small pilot study showed desirable improvements in abilities for the goals for each child which made a positive difference in their daily lives and for their parents too. The researchers concluded larger-scale research is needed to draw clearer conclusions, however this pilot study helpfully illustrates real-life experiences objectively. This is one of a variety of clinical studies on the Mollii Suit either recently published or completed and awaiting publication in the next few months of 2019 or early 2020. Each candidate for a Mollii Suit is individually assessed so it can be programmed for their needs and the correct size provided. The assessment usually reveals the initial effects the Suit provides which can be tried further by hiring the Suit for a month or more at home. Contact Remotion Ltd for further details: 01730 269000 mollii@remotion.co.uk www.remotion.co.uk
Birgitta Nordstrom PhD & Maria Prellwitz PhD (2019): A pilot study of children and parent’s experiences of the use of a new assistive device, the electro suit Mollii, Assistive Technology, DOI: 10.1080/10400435.2019.1579267. https://doi.org/10.1080/10400435.2019.1579267
*
It’s showtime! SAVE THE DATES FOR OUR FUTURE EVENTS... MIDDLE Wednesday 4th March 2020 Ricoh Arena, Coventry NEW DAY, NEW DATE!
SOUTH
Thursday 7th May 2020 Farnborough International Exhibition & Conference Centre, Farnborough
WALES & WEST
Thursday 2nd July 2020
The International Conference Centre (ICC), Newport NEW VENUE! �WE’RE MOVING!�
SCOTLAND Thursday 10th September 2020 Royal Highland Centre, Edinburgh BACK BY POPULAR DEMAND!
NORTH Thursday 12th November 2020 EventCity, Manchester
kidz ADULTZ
to
The study focused on 3 areas: The child’s self-image, differences noticed and comparisons with an alternative treatment (Botox injections).
EVENTS
17
TARGETED TRAINING
the key
FOR THE MOVEMENT CENTRE 18
THE MOVEMENT CENTRE IS A UK CHARITY PROVIDING A SPECIALIST THERAPY FOR CHILDREN CALLED TARGETED TRAINING. THE CHILDREN WHO VISIT THE MOVEMENT CENTRE HAVE A DISABILITY THAT AFFECTS THEIR MOVEMENT CONTROL
T
his means they may be unable to lift their head, to sit without support or find it challenging to stand or take their first steps Many of the children who visit The Movement Centre have Cerebral Palsy or Global Developmental Delay, but Targeted Training therapy can be suitable for any child who faces problems with their movement control. The therapy draws on specialist physiotherapy and bioengineering and has been developed at The Movement Centre over the last 23 years, using clinical trials, audit and research. It is different from other therapies because it works by placing a child in an upright position and uses specialist equipment to provide stability and support. It involves a programme of daily exercises and review appointments and is tailored for each child. The charity says that, through a course of Targeted Training, children can gain head control, so they can interact with their family. It can help children develop the skills to sit unaided, so that they can play with their friends. For some children it can enable them to walk, which means they can be far more independent. Max was referred to The Movement Centre when he was almost three years old. He was born with Cerebral Palsy, which resulted in Max having increased spasticity in his lower limbs and trunk, which meant he had problems with his movement control. Before attending The Movement Centre Max did not like lying on his tummy and was unable to roll over. He was able to sit independently but found it hard to balance and stay in a stable position,
which was very frustrating for him. During Max’s first assessment, The Movement Centre’s specialist physiotherapists were able to determine the areas where they could help support Max. He was set specific goals, aiming to help him develop his sitting posture, balance and his floor mobility. Max took his stander home so he could practice his daily Targeted Training therapy with his family. It is important that Targeted Training takes place every day, but
It is important that Targeted Training takes place every day, but as it only takes half an hour to an hour, it isn’t too hard to fit into a daily routine as it only takes half an hour to an hour, it isn’t too hard to fit into a daily routine. In fact, from the very start Max loved his Targeted Training equipment, so it didn’t feel like homework at all. Max and his family’s daily practice meant that he made great progress, including with his sitting, which The Movement Centre monitored at his review appointments. This is when his physiotherapist assessed if they needed to make alternations to his Targeted Training standing frame. Max’s trunk control improved during the course, so the support was
lowered to below his pelvis, in order to target Max’s hip control. When Max completed his course of Targeted Training therapy, he had become far more confident with hands free sitting. He was also far more adept at rolling, something he was not keen on at all before. Max now needed very little help to move from lying into sitting and could stand at a stable surface when holding on to it with both hands. This means Max has far more independence, which has had a positive impact for him and his family. To find out more about Targeted Training therapy please visit www.the-movement-centre.co.uk
Max is just one of the children who has benefitted from the therapy on offer at The Movement Centre
19
The Osprey Group are back again! The Osprey Group are back this year with a whole range of brand new products as well as some of our classic range and maybe even a first look at something brand new ahead of it’s official launch at the OT Show! Can’t make it to the show? Our team of nationwide product specialists are available for home demonstrations! Just call our office team on 01257425623.
Stan d D23
The Flyta Active Chair The Flyta has been designed for Active Wheelchair users to replace the more classic, clinical looking shower chairs that are traditionally provided for disabled users.
20
The Non Slip Inseat Sling this sling has been designed to revolutionise the way we use Inseat slings. Perfect for use when the user is being driven to and from appointments.
The Bath Mobile The Bath Mobile is an innovative new alternative to a traditional commode chair and is the perfect addition to any home care or hospital setting.
21
RESEARCH SHOWS ‘IN SCHOOL’
APPROACH EFFECTIVE FOR EYE CARE
RESEARCHERS FUNDED BY CHILDREN’S CHARITY ACTION MEDICAL RESEARCH, HAVE ESTABLISHED THAT OFFERING COMPREHENSIVE EYE CARE SERVICES IN THE FAMILIAR SETTING OF A CHILD’S SCHOOL OFFERS ‘MEASURABLE VISUAL AND BEHAVIOURAL BENEFITS’ FOR CHILDREN WITH SPECIAL EDUCATIONAL NEEDS (SEN) OR AUTISM
O
ver 130,000 children and young people attend special schools in the UK. One in four children with learning disabilities are 28 times more likely to have a serious sight problem than other children – but more than 40% have never had an eye test or any eye care. With funding of almost £190,000 from Action Medical Research and support from a Department for the Economy PhD studentship to Ulster University, The SEE (Special Education Eyecare) Project has been launched.
Researchers set out to determine whether comprehensive eye care delivered in school would benefit children and young people across three important and interlinked areas: children’s eyesight and eye health; their classroom behaviours; and how well their visual needs are met. Key findings showed that the inschool approach is effective: 61% of the children who took part were found to have at least one significant eye or vision problem. 45% had at least one unmet visual need, for example no glasses or
no provision of large print learning materials. But on follow-up, the number of pupils with unmet visual needs dropped significantly to 18%. Younger pupils, and those with no previous history of eye care, were more likely to demonstrate unmet visual needs when first tested. Classroom engagement was found to improve after actions to help address unmet visual needs were communicated to parents and teachers. For more information, visit https://action.org.uk Photo by v2osk on Unsplash
22
*
FIRST SESSION IS FREE
£10
per service user BOOKING REQUIRED
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.
*T&Cs apply
Telephone: 0161 214 5959 Email: info@redbankhouse.com
@redbank.house
Redbank House, 4 St. Chads Street, Manchester, M8 8QA
@redbankhouse
Part of Disabled Living. Charity No: 224742
@redbank-house
www.redbankhouse.com
SMASHING THROUGH BARRIERS
with challenges
M
BENDRIGG TRUST IS AN INCLUSIVE OUTDOOR CENTRE, WITH THE AIM OF GIVING PEOPLE THE OPPORTUNITY TO SMASH THROUGH BARRIERS BY CHALLENGING THEMSELVES TO TAKE PART IN ADVENTUROUS ACTIVITIES SUCH AS CLIMBING, ABSEILING AND CANOEING
artha Wood, Marketing and Fundraising Officer for the charity explained about the work of Bendrigg Trust. “Many of our participants have experiences that they never have previously thought were possible and it can help to improve their confidence and self-esteem.” Martha says that the charity believes that the outdoor
24
environment gives us a unique sense of freedom: “We believe it’s extremely important that people of all abilities have access to the outdoors, not only as part of a residential, but on a regular basis back at home. As well as an endless list of health benefits, there are many studies which show that time spent outdoors can reduce stress and anxiety levels, improve memory,
boost your immune system and work wonders for your mental health”. As well as residential courses, Bendrigg also offers regular services and clubs such as an inclusive climbing club and outdoor rock days during half term. There is the aiming high community playing field, complete with accessible roundabout, swing, nest swing and a range of adaptive
bikes and trikes for all the family to enjoy and Sensory room open sessions are available too. Bendrigg Trust also offer residential trips for families, groups and individuals with a disability who would like a fully inclusive break away with accessible accommodation, food and a full programme of adventurous activities included. Martha has put together her top 5 resources and tips to help you access the great outdoors…. 1. THE WILDLIFE TRUST – NATURE RESERVES The Wildlife Trust have a number of accessible nature reserves across the country which offer close encounters with UK wildlife. From bird watching in a hide to exploring ancient woodland, nature reserves offer a quiet and exciting opportunity to connect with nature and wildlife. 2. GARDENING & HORTICULTURAL THERAPY The therapeutic benefits of gardening are well recognised nowadays. Thrive, uses gardening to bring about positive changes in the lives of people living with disabilities or ill health, or are isolated, disadvantaged or vulnerable. They have 3 centres in the UK but also have access to volunteering projects around the UK that you could get involved in.
Kingwood is a charity that provide support for people with Asperger Syndrome and Autism, they have put together a detailed report called Green Spaces, which explores outdoor environments for people with Autism, you can read the full report online to get ideas for creating your own green space. 3. THE OUTDOOR GUIDE – ACCESS TOG Julia Bradbury has developed a fantastic website “The Outdoor Guide” which has its very own Access
There are many studies which show that time spent outdoors can reduce stress and anxiety levels
TOG section with heaps of wheelfriendly walks across the UK. The blog is full of helpful and practical advice including reviews of all terrain wheelchairs. An outright purchase of an allterrain wheelchair can be expensive,
but with a little research you’ll be pleasantly surprised at the amount of local places that hire them out free of charge. Many National Trust sites do this, including Tarn Hows, Malham Tarn and Fountains Abbey – You must call ahead to pre-book. 4. HELP WITH TRANSPORT COSTS Government and local councils offer discounts schemes and passes for disabled travellers and their carers. From rail cards to bus passes and dial-a-ride door-to-door minibus services – you can find out more information about this on The Mencap website. 5. RESEARCH LOCAL FACILITIES AND RESOURCES After a quick google search or a look on Euan’s Guide, you may be surprised at what accessible activities and facilities are available in your area. Take Wheels-For-All for example, an inclusive cycling club that run groups all over the UK. It’s always worth researching to see whether there are things such as accessible walks, a quiet hour at your local swimming pool or accessible events on in your area. To find out more about Bendrigg Trust please call 01539 723766 or visit www.bendrigg.org.uk
25
How to best manage the EHCP process –
5 top tips
BY RACHEL GIBBY, SOLICITOR, CL MEDILAW
W
ith the number of appeals being registered with the SEND Tribunal continuing to rise, parents are keen to get the Education, Health and Care Plan (EHCP) process right. Whether you are at the assessment stage, considering a draft Plan, or attending an annual review, these key tips can help ensure your child gets the correct EHCP for them.
1
BE WELL-PREPARED EHCPs are lengthy documents and there can be a lot of ground to cover in meetings with the school or local authority. If parents consider that changes should be made to the EHCP, it can be helpful to produce an annotated version with the proposed amendments, and take copies for the school and local authority. This can save time in meetings and make it easier for everyone to follow what is being discussed. It’s a good idea to keep a careful note of what is said in the meeting, and any changes to the EHCP that are agreed. Parents may also wish to send a follow-up in writing to the local authority or school to confirm what was discussed and any agreed next steps.
2
THINK ABOUT YOUR EVIDENCE As part of the EHC needs assessment or annual review process, certain advice from professionals will be gathered to
26
ensure that information about the child or young person’s special educational and health and care needs, outcomes and provision required is up to date. However, if parents have other evidence which supports their points, it may be helpful to send this to the local authority/school (before any meeting) and highlight which parts should be considered. This could include other professionals’ or therapists’ reports, health service reports or records, school reports, or examples of school work.
3
GET SUPPORT Attending a meeting with lots of professionals, school staff and local authority representatives can be daunting. Parents can request to take somebody with them, even if just to be present for support.
4
KNOW THE PROCESS Parents should ensure they are given the correct amount of time to respond or provide their views following a local authority decision or draft EHCP. For example, parents should be given at least two weeks’ notice of an annual review meeting, allowing time for preparation. If the local authority decides to amend the EHCP following an annual review, it should give parents 15 calendar days to make representations about the proposed new Plan.
5
SEEK ADVICE If there are any concerns about the statutory process not being followed, advice should be sought as to the options available. A specialist solicitor can provide advice on next steps, and certain charities also provide information and advice to families on the EHCP process. Rachel Gibby is a Solicitor in the brain injury team at CL Medilaw. The brain injury team specialise in compensation claims and can also provide advice on special educational needs, the Court of Protection, and welfare benefits. Rachel will be delivering a free to attend seminar on EHCPs, the process and how to appeal at Kidz to Adultz North at EventCity on 14th November 2019 at 2:00pm.
HERE’S THE EASY WAY TO FIND WHAT YOU ARE LOOKING FOR... 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
“I have always found Smirthwaite to be caring. They care about the needs of my clients, they listen to what I need and they care about providing the child with the very best solution” Claire, Occupational Therapist South West
At Smirthwaite, we help support the lives of children with special needs with a range of beautifully designed furniture and equipment. To find out more visit smirthwaite.co.uk or call us on 01626 835552
Supporting children and their families for life
Financial protection
for vulnerable beneficiaries
BY PHILIP M. OGDEN, SENIOR CONSULTANT, ESTATE PLANNING CONSULTANTS
E
veryone has fears about the future. As a parent or carer of someone who is vulnerable, yours may be “how will they cope when I’m no longer around? How will they manage financially? Will they still receive Benefits? How can I minimise the effects of changes in their life?” Everything you have done for your child since ‘day one’ has been to give them a fulfilling, happy life. With the correct action now, this does not need to change. A correctly written, professional, robust Will including a trust for your vulnerable child will ensure that potential problems are avoided. WHY IS IT IMPORTANT? If you do not have a Will, all your children will inherit their equal share of your estate upon attaining their 18th birthday. This, clearly, could be highly inappropriate because: 1. Your child may not have the capacity to manage or spend wisely their inheritance and may waste it. This can result in the need for an application to the Court of Protection for a Deputyship Order so that someone can manage their inheritance. Potentially control
28
can be lost, and decisions made that do not reflect your wishes. 2. Unscrupulous people, sometimes even those supposed to be caring for them, may take advantage of them, misappropriating their wealth. 3. Means Tested Benefits and Support Packages funded by Local Authorities may be cut, leading to any inherited funds being used to pay for services and activities until the inheritance is gone. SO, WHAT CAN YOU DO? Make a Will A Will is a legal document which sets out your wishes for the distribution of everything you own after you have died but also can be used as a financial planning tool. Loss of inheritance can result from remarriage or long-term care fees later in life. The correct Will can minimise the risks and maximise the inheritance for your loved-ones. Set up a Trust A legacy for a vulnerable person can be left in a Trust where it is ‘ringfenced’ for their long-term benefit.
This means that they will not be spending their legacy unwisely; will not be taken advantage of and will not lose their Means Tested Benefits. This is a highly specialised process and should only be handled by qualified specialists experienced in this area (STEP qualified). Letters of Wishes It is highly recommended that, along with the Trust in your Will, you create two Letters of Wishes to provide guidance as to: 1. Financial aspects i.e. How you want the money to be used. 2. Information about your child’s likes and dislikes; holiday preferences and living arrangements. Things that only you would know. These Letters of Wishes are not legally binding but give invaluable guidance to your chosen Trustees for when you are no longer around. There are many things that parents may do, with the best of intentions, that could be catastrophic. For free advice call 0800 781 6658 or visit www.estplan.co.uk
Tree of Hope are the crowdfunding charity of choice helping children and young people with a disability or illness by supporting their families to raise funds for specialist care that is not freely available to them via the UK healthcare system. We give access to corporate donations, GiftAid, potential grants from Trusts and Foundations and most importantly provide reassurance to donors.
NEW ASSESSMENT ADVICE The British Healthcare Trades Association (BHTA) has produced a new guidance leaflet to help families, healthcare professionals and carers to understand the sometimes difficult route to preparing for a child’s assessment and what outcomes should be achieved. The leaflet takes you through the process step by step of preparing beforehand and what to expect on the day. There is a useful flowchart that can be used to guide you through the process and some useful questions to ask. This and other Get Wise leaflets are available to download from: www.bhta.com/get-wise-leaflets
Who do we help? • Children under the age of 18, with access to funds up to their 25th birthday • Children living anywhere within the UK • A child suffering from a disability, illness or autism
Medical conditions we have helped with.. • Cerebral Palsy • Autism
• SWAN
• Hypermobility
• Brain injury • Plagiocephaly
• Global Developmental Delay
What can you fundraise for? • Therapy • Equipment • Operations and treatment inside and outside of the UK • House adaptations • Sensory Gardens
Call us on.. 01892 535525 Email us via..
info@treeofhope.org.uk
Head to..
www.treeofhope.org.uk Registered Charity in England and Wales No. 1149254 / Scotland SCO42611
Our People, Your Team
Why Choose Lanyon Bowdler for Medical Negligence Claims? Our specialist team will provide you with a comprehensive and personal service • We understand all the practical and emotional difficulties involved in suffering a medical injury • We have a national reputation for achieving successful outcomes for clients with difficult and complex cases including birth injury and cerebral palsy claims • Locally based with offices in North Wales, Herefordshire & throughout Shropshire
0800 652 3371
www.lblaw.co.uk • info@lblaw.co.uk
Voted ‘Clinical Negligence Team of the Year 2018’ in the Eclipse Proclaim Personal Injury Awards
My family and I felt supported and cared Mrs C B, Hereford for during a very distressing time Lanyon Bowdler Solicitors are accredited by the following organisations...
Shrewsbury • Bromyard • Conwy • Hereford • Ludlow • Oswestry • Telford
Recognition for legal team
supporting families
THE SPECIALIST SERIOUS INJURY AND MEDICAL NEGLIGENCE TEAM AT LAW FIRM FBC MANBY BOWDLER HAS BEEN HIGHLIGHTED IN THE LEGAL 500 REGISTER, WHICH RECOGNISES THE BEST LAWYERS IN THE UK
P
artner Tim Gray, secured one of the UK’s largest compensation pay-outs of more than £20m for a client injured in a motorcycle accident. He’s supported by Partner Susan Todhunter, who received a ‘Women in Law’ Award in recognition of her outstanding legal expertise and contribution within the practice of Personal Injury – Brain Injury Claims. The expanding team is based in the Midlands but works with services across the UK to put rehabilitation, care and support packages in place. Tim said: “We know that many
30
families face a tough time and we’re honoured that we’ve been recognised for the trusted and compassionate way we work alongside families.” Tim added: “What makes us different as a team is probably the long-term relationships we build with families. We can help with putting together care and support packages with the rehabilitation services we work with.” The Serious Injury & Medical Negligence practice has also had a close association with the charity Headway for many years – with the
team’s Neelam Heera, a trustee of Headway Birmingham. The firm also works closely with other locally based charities, including the Child Brain Injury Trust (CBIT) as well as being a member of the Action against Medical Accidents group (AVMA). FBC Manby Bowdler is also a member of the Brain Injury Group (BIG), a national network of expert brain injury lawyers. For more information, visit www.fbcmb.co.uk
www.fbcmb.co.uk
Trusted and Compassionate
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.
Head & Brain Injuries
Spinal Injuries
Medical Negligence Claims
Court of Protection & Deputyship
Susan Todhunter
01902 393460
susan.todhunter@fbcmb.co.uk
www.fbcmb.co.uk
6-10 George Street Snow Hill Wolverhampton WV2 4DN FBC Manby Bowdler LLP is a Limited Liability Partnership.
31
Hand washing and bathing – working towards
independence BY PENNY TOWNSEND MCSP HCPC NBE ADVANCED MEMBER
C
hildren typically learn to wash and dry their own hands by about the ages of 24 to 30 months. To achieve independence with any hand washing or bathing tasks children must have some mobility, stability in sitting and standing and be able to move and reach with their arms and hands. For children whose motor skills are limited due to their disability, it’s important to remember to break the task down into small functional steps. Some children may not achieve any independence in this area and may be reliant on their carers for this part of the daily routine. However washing can be made a fun learning experience, many children have difficulties with their body awareness for many reasons, so using touch
32
and affirmation of body parts during bathing can improve the child’s own perception of sense of self, this can help cut down on distress during bath times. It may also help improve tactile defensiveness, it may help make the child less stiff and more relaxed and it may improve their communication.
TOP TIPS
For Handwashing 1. Start teaching them to wash and dry their hands in sitting. If they can’t reach the sink: • Use a bowl of water on a table in front of them • Or a bowl of water on the tray of their specialist seating • Or a bowl on the tray of their standing frame
• Place a waterproof mat on the floor – it could get messy 2. Use automatic soap dispensers, so that they only have to place their hand under it to get the soap, or you can position their hand easily under it 3. As they get bigger and if they have standing balance use a small block
step with a non-slip bottom so that they can reach the sink • Pre fill the sink with warm water so that they don’t have to turn the taps on and off • Taps with lever type handles are easier to use than taps that need turning • Automatic taps are a godsend! 4. Drying hands, they may need help to do this, think about the material that the towel is made of, using a range of drying materials can help with sensory issues • Some children maybe really afraid of hand dryers- so working on desensitizing activities can help, for example using small hand held fans, hairdryers, blowing on the hands etc. For Bathing Bathing can create a lot of physical hard work for the carers of children with additional needs. There is a lot of equipment available to make bathing safer, depending on your child’s needs an assessment may be needed from an Occupational Therapist (OT). If your child has a significant physical need then moving and handling also needs to be considered, advice should be sought from an OT, moving and handling adviser, housing adaptations OT and a specialist equipment provider. Bath time can place a lot of postural strain on carers due to the low level of the bath, lifting in and out of the bath, supporting and washing your child in the bath can all take its toll on the back, hips and knees. Bath time can be exhausting for carers and can be stressful for the child if they don’t feel safe. Getting in and out of the Bath • Using a small step for the child to stand and step into the bath may decrease the need for them to be lifted in and out • A small step and a bath board may also help if your child’s standing ability is limited • A height adjustable bath seat to lower them into the water is another alternative
• Support in the Bath • Using a prescribed specialist bath seat (assessed by an OT) • Using a powered reclining bath lifter when the child hasn’t got the ability to sit (assessed by an OT) • For the smaller child some interim home-made devices can help give your child security when in the bath, for example using 2 rubber rings placed on a non-slip bath mat, or using a plastic weave laundry basket on a non-slip bath mat (advice from Nancie Finnie’s book Handling the Young Child with Cerebral Palsy at Home) • For the smaller child using a child bath insert that fits over the bath, such as the eco bambino • A bath bagel may also be a suitable alternative
Bath time can place a lot of postural strain on carers
Postural Considerations and Moving and Handling • Using hoisting equipment to get the child in and out of the bath, a ceiling track hoist is easier than a mobile hoist. Mobile hoists need to be able to fit under the bath • A height adjustable bath with an integral shower/changing stretcher allows for an improved carer posture • Using a powered bath lift to get them in and out of the bath • Kneeling at the side of the bath instead of bending over, use a gardener’s kneeling pad to save your knees • Sitting on a small wheeled stool or chair instead of bending over will help improve your posture • Using long handled sponges
and loofahs, decreases the need to overreach to wash your child • If you are manually lifting your child in and out of the bath, lifting and lowering them in is easier as they are dry, lifting them up and out when they are wet is harder, it is always a good idea to let the water out of the bath and wrap them in a towel before lifting them up and out. A large towel with a hole for the head cut into it is an easy way to quickly wrap up and dry your child Benefits of Bathing-treatment ideas Children should enjoy bath time and it’s a good opportunity to incorporate communication activities, sensory activities and motor skill activities. • Children who have limited mobility find it difficult to move toys on dry land, but in the water smaller movements are needed to cause interaction with the toy • Using small watering cans, squeezy drinks bottles, shower attachments to spray/pour water on different parts of the body and naming them improves body awareness • Filling and emptying small plastic pots, encourages hand/ eye coordination • Splashing and kicking legs are good for strengthening muscles… be prepared for a wet bathroom • Communication, bath time can be used as a learning experience of wet/dry, on/off, cold/hot • Baths are also a great place for singing • Drying the child with a soft towel/rough towel can improve proprioception (body awareness) These are just a few ideas and tips and I am sure that you will develop and already have many more of your own. Remember to ask an OT, physiotherapist or moving and handling adviser for advice on equipment.
33
Can’t find the right product?
Produce it yourself!
34
WHEN SOPHIE KHAN WAS LOOKING FOR SOMETHING TO KEEP HER DISABLED SON WARM AND COMPLETELY COVERED WHILE HE TRAVELS IN HIS SPECIALIST PUSHCHAIR, SHE SEARCHED HIGH AND LOW BUT COULDN’T FIND EXACTLY WHAT WAS NEEDED
S
ophie’s background is in fashion design and so she set out to produce something that would be better suited to their needs. The result is a product that has been designed around her son Zaid, who suffers from Dravet Syndrome, a life limiting illness. As a parent with a child with various needs Sophie says that she has attended Kidz to Adultz Exhibitions in the past to find resources and ideas to help him. At the Kidz to Adultz Exhibition in Manchester, Sophie will be an exhibitor rather than a visitor as she takes her new company to a show for the first time. Sophie explained: “The bag needed to keep him warm and dry, make him feel safe and secure, be durable and fit his pushchair - a lot to ask for. With the support of a manufacturer I designed a ‘Kozy bag’ and Kozyfozy Solutions was born. I quickly found that other people loved my idea.” Sophie added: “Our Kozy bag has a 2 way zip, which allows you to open I quickly found that the bottom other people loved so feet can be my idea free, which is excellent if shoes are muddy! It has 8 harness holes to choose from so it fits most chairs and there is a hood so you can completely hide from the outside world.” There are adjustable Velcro straps so it can be shortened for smaller users and so that the bag grows with the person. It is rain resistant, light weight and comes with its own carry bag and can be machine washed at 40 degrees. Currently colour options are red or khaki green. Sophie’s company has only been trading since September 2019 but she says there are more products to come. “My aim is to produce and cater for toddlers, juniorteenagers and adults for pushchairs, wheelchairs and mobility scooters. The business is young and small, but keep an eye out for new exciting designs in the future!” For more information, visit www.kozyfozy.co.uk
35
TEENAGER’S COMMUNICATION DREAM
FOR LITTLE BROTHER
A TEENAGER HAS BEGUN TEACHING SIGN LANGUAGE TO HER LITTLE BROTHER, WHO HAS CEREBRAL PALSY, SO THAT HE CAN COMMUNICATE WITH EVERYONE
C
ollege student Jade Kilduff has begun teaching little brother, Christian, how to communicate using Makaton, a form of communication based on British Sign Language (BSL). Makaton signs are based on the gestures used in BSL, but it is used in conjunction with speech and in English grammatical word order. Over 100,000 children and adults use Makaton symbols and signs, either as their main method of communication, or as a way to support speech. Under the moniker ‘Sign Along With Us’, Jade and Christian have started sharing online videos of their signing so that others can learn how to communicate with those who have learning or communication difficulties. Jade, who wants to work with
My dream is for Christian, when he’s older, to be in a world where he can talk to whoever he wants, and they’ll be able to understand what he’s trying to say
36
children with special educational needs and difficulties, said: “I started learning basic signs so I could speak with Christian, who is also being taught sign language at Rainbow House in Preston.” “He’s been going there for about 18 months, and he’s really picking up the signs. My dream is for Christian, when he’s older, to be in a world where he can talk to whoever he wants, and they’ll be able to understand what he’s trying to say.” “If everyone knows just the basic signs, Christian, and other children and adults who sign, will be able to
communicate through sign, opening up a world of possibilities and new chances for social interaction.” Jade has also started a government petition for sign language to be taught in all schools as part of the curriculum and be offered as a GCSE in all high schools. Jade also won one of the Mayor’s youth awards this year for Sign Along With Us. Reproduced by kind permission of rochdaleonline.co.uk
Jade with her brother, Christian
“We tr
g Curt is n i p e e in k ” helped nter is a first. s a h d Be wi urning ia over T n c o i t m c r u ne rA hat you with us. No p t e v e i l he re Scotia Cot uly be The Scotia cot for infants is designed to blend into a traditional nursery environment, while making it easier to lift the child.
Centrobed produce specially designed products for children. A paediatric bed needs to fit the child and ours certainly do.
Quoddy a bed that grows
Gaps in the bed are the primary concern when choosing a bed for a child, Centrobed have made sure there are NO GAPS that can put your child at risk of entrapment. The bed is made to fit the child with the backrest and knee break bending in the correct place.
The Quoddy is a fully profiling paediatric bed designed to support and profile in the correct places for the child.
Flores Cot
● Comfort and support ● Moving and Handling issues
The Flores model is a high-sided wooden cot with profiling bed frame.
● Night time posture supports
Bespoke sizes available.
● Custom made beds and cots to meet complex needs
Wo
Arctic Turning Bed
t ns - Online Cha o ti ta n se re P e rldwid
-
Video
Calls - Free
Demonstrations
www.centrobed.com t: 01233 635353 e: sales@centrobed.com
AUTISM explained
BY ALISON BUTTERWORTH, ADVANCED PAEDIATRIC NURSE PRACTITIONER
A
ccording to local and national drivers ‘Autism’, currently seems to be the buzz word with help and early recognition on the way. As a reminder, autism is a triad of presentations – (1) communications difficulties, (2) social deficits including difficulties in reciprocal social interaction and social communication, and (3) restricted interests and rigid and repetitive behaviours. The first Autism Act in 2009 identified a National Autism strategy for adults, followed by the ‘Think Autism strategy’ 2014. These strategies set out programmes of action to ensure adults with autism were offered the help and assistance highlighting their needs including; Autism aware communities; Autism Innovation fund and better data collection and access to information. The need for autism awareness training was also highlighted especially with health care workers. So what happens with children and young people? It has taken 10 years for the government to acknowledge the National Autism Strategy should be extended to children (Dec 2018). In Manchester, the Greater Manchester Health and Social Care Partnership (GMHSC) was created to oversee the devolution of health and social services. Currently, the GMHSC are introducing projects such as ‘Making Greater Manchester Autism Friendly’ encouraging local authorities to comply. Pathways are evolving after consultations with parents, promoting aims such as the
38
diagnosis, strategies and intervention is provided in a timely manner. As the National Autism Society (NAS) state ‘while autism is incurable, the right support at the right time can make an enormous difference to people's lives’. This is seen as the way forward. Referral rates for children to be assessed and diagnosed have increased, in South Manchester the numbers have increased by 500%. I work as an Advanced Paediatric Nurse Practitioner (APNP) within a
Children can be very complex and need to be unpicked like a ball of wool or similarly pieced together like a jigsaw
Community Paediatric Service; my role includes accepting (triaging) referrals, undertaking a detailed developmental and medical history, assessments (including ADOS), diagnosing and support. Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK – that's approximately 1 in 100, with an average of 4:3:1 male to female ratio. (www.autism.org.uk) Autism doesn't just affect children we have to remember that autistic children grow up to be autistic adults.
Since the 1980’s an increase in the numbers of people diagnosed with autism has been noted. Consideration needs to be taken into account for the changes in the diagnosis tools, the fact that the public are more aware of the presentation and the ICD10/ DSM IV(Diagnostic and Statistical manual of mental disorders) now uses the umbrella term ‘autistic spectrum disorder’ which encompasses -Autism, Asperger’s, Pathological Demand Disorder (PDA), Pervasive Developmental Disorder (PDD). Currently research is indicating the new DSM V (2013) will reduce the numbers diagnosed due to the dropped classifications of pervasive developmental disorder (PDD) and Asperger’s. Early identification for children presenting with social communication difficulties is paramount, however more importantly is the need for early intervention. Many children are referred to our service with little or no prior input. One of the red flags for recognising autism is a speech and language delay. Evidence suggests the earlier the identification and onset of intervention, the greater likelihood of an improved developmental trajectory (Koegel et al 2014, Camarata 2014). Data (Koegel 2000) also suggests that ‘children who are completely nonverbal beginning intervention in the preschool years are far more likely to become verbal than children who begin the intervention over the age of 5 years’. Early intervention also leads to fiscal savings, as untreated symptoms
become more abundant and more severe in later life. Nonverbal children, unclear pronunciation or children displaying difficulties with expressing themselves become easily frustrated as they’re not understood by their peers. We may therefore see inappropriate / aggressive challenging behaviour as a consequence. Alternatively, parents often report their children have excellent communications and use ‘big’ words, not requiring any SALT referral. These children may be displaying ‘echolalia’ (repetition) and appear to have a mature grasp of the language but when further investigated these are the children that struggle in the classroom due to their lack of understanding and lack of expressive speech. Interventions for challenging behaviour need to be applied with parents being the effective change agents with support from
professionals. There are many accessible parenting groups for example; Webster Stratton, which offer parents guidance. Consistency and routine are paramount. A good routine removes the unexpected, allowing the child to understand what is expected of them, thereby preventing triggers for behaviour. Relieving anxiety can also remove some of the aggressive behaviour we see. For example a visual time table in a school environment, a social story or applications of a sensory diet. Children can be very complex and need to be unpicked like a ball of wool or similarly pieced together like a jigsaw to find the correct cause/diagnosis for their presentation. Some children are not developmentally age appropriate and need time to mature. Children who have suffered an adverse childhood experience (ACE) may not have had their basic needs met
Start a new chapter
(Maslow’s 1943, Hierarchy of needs) and therefore rather than refer for autism/ social communication assessments, the need to allow time to gain these physiological needs creating a solid foundation for development. Interestingly Maslow noted that the third level of human need is social and involves feelings of belongingness and he stated the need for interpersonal relationships motivates behaviour. In summary, autism is a lifelong developmental disability that affects how people communicate and interact with others. It is a spectrum condition, meaning it affects people in different ways. The application of early intervention once a problem is identified will improve both the children’s outcomes and the parent’s mental health wellbeing; the child will be enabled to transition into a school environment removing the negativity which may affect the child’s ability to engage in activities and education.
Calibre Audio Library brings the joy of audiobooks to young people with sight problems, dyslexia or other disabilities. To join, call us on 01296 432 339 or visit www.calibre.org.uk Plus visit us at the Kidz to Adultz exhibitions throughout 2019
calibreaudio Registered charity no. 286614 VAT registration no. 138840202
39
Spokeguards
NEW
products added
B
undleBean has added to its range of fleece lined waterproof wheelchair cosies with a new two-tone grey cloud design with ontrend metallic silver lightning bolts. The company has also introduced co-ordinating spoke guards in flamingo, elephant and polar bear
designs and wheelchair flight bags which have a large pocket for loose parts and spares. They are available in two sizes and suitable for manual folding wheelchairs. For more information, visit www.bundlebean.com
Flightbag Cosy
40
Your posture management experts The Miko buggy offers a fully reversible seating position and accommodates SOS seating such as the lightweight Flexi Seat aiding the daily management of children requiring postural support
P Pod Our award-winning P Pod provides sociable postural support & our Mobile Base fits through standard door frames and is available with powered tilt function.
MSI MoJo Customised to the individual, the MSI can be used with a variety of bases including our own Mojo wheelbase
Specialist seating and mobility equipment for use in the home and community!
24 hour
posture management for children and adults
Call us today on
01283 520400
www.specialisedorthoticservices.co.uk 41
MAKING THE CASE
for yoga
BY EMILY KELLETT, OCCUPATIONAL THERAPIST, SEASHELL TRUST
42
means we look at all aspects of an individual’s life, what is important to them, and what barriers they experience that might prevent them from participating in everyday tasks. One of the most commonly known benefits of yoga is the development of our physical health. It improves our co-ordination in gross motor movements; helping with confidence in physical activities such as football, dancing, tennis and many more. It also supports our development of balance and builds strength.
Yoga naturally provides lots of sensory information to our bodies Increased strength in our core muscles and upper body directly links with improved fine motor skills; helping with fastening buttons and handwriting. Due to yoga’s strong emphasis on mindfulness and listening to our bodies in the ‘here and now’, it hugely supports our mental and emotional wellbeing. It does this by positively impacting on levels of focus, attention, and stress management. It helps individuals to ‘listen’ to their bodies, and know
when and how they need to slow down, relax and take a deep breath. The focus on breath in yoga allows our parasympathetic nervous system to come into play. This system is responsible for calming our mind and body. It prepares us for rest and relaxation as well as supporting our digestive system to work effectively; providing us the nutrients we need to remain healthy! It can be done anywhere, by anyone, there is no time limit, expectations, demands or rules. It can be tailored to the individuals needs at that time by adjusting the pace and challenge of the positions. Yoga and occupational therapy both place emphasis on the ‘whole’ person and incorporate the use of the mind and body to enable individuals to live their life to the fullest, with confidence and selfbelief. So stretch, twist, experience and breathe, and see how Yoga can benefit you!
Photo by Jyotirmoy Gupta on Unsplash
Y
oga is fast becoming a ‘buzz word’ within the healthcare community, and more frequently explored by Occupational Therapists. I first found a love for yoga and mindfulness from a personal perspective. I couldn’t believe the benefits my body and mind received – I just had to bring it in to my clinical practice. Within my current role, I support children and young people who experience significant sensory processing challenges, which can manifest as behaviours that challenge. Yoga naturally provides lots of sensory information to our bodies. To name a few; it provides additional tactile input and increased body awareness through gentle movements. This helps to support our central nervous system to reach a ‘calm and alert’ state. Yoga is defined as a journey of self-discovery and empowerment; bringing the mind, body and breath together. It facilitates a feeling of connectivity within our bodies and environments. It supports a feeling of being grounded, allowing for a greater sense of control which can be transferred into everyday life situations. Occupational Therapy focuses on enabling individuals to engage in meaningful activities, despite limitations in their physical, sensory and communication abilities. Occupational Therapists view individuals holistically. This
equipment and products to make life easier in partnership with ...in partnership with Shop online with Disabled Living for What’s the advantage? equipment and products to make life easier
The best of both worlds...
partnership with The main...in advantage of purchasing via the Disabled What’s the advantage? website, is the online and get free TheLiving main advantage of shop purchasing via the Disabled opportunity for you or your Living website, is the opportunity for you or your professional advice clients clients to speak to to speak to With over 250,000 items in stock at With over 250,000 items in stock at Occupational Therapists or Therapists Occupational competitive prices, weor are offering Continence Specialists for competitive prices, we are offering you choice from a wide range of freeContinence impartial help and Specialists for manufacturers including mobility advice, ensuring you choice from a wide range of aids, daily living products, and unnecessary purchases are help free impartial and continence suppliers together with manufacturers including mobility not made. telecare and telehealth equipment. advice, ensuring aids, daily living products, and unnecessary purchases are continence suppliers together with not made. telecare and telehealth equipment.
www.disabledliving.co.uk/online-shop Telephone: 0161 607 8200 Charity number: 224742
Over 250,000 items in stock at competitive prices
When you shop online with Disabled Living for equipment and products to make life easier you or your clients can speak to Occupational Therapists or Continence Specialists for free impartial help and advice, ensuring unnecessary purchases not 8200 made. Telephone: 0161are607
www.disabledliving.co.uk/online-shop Large choice from a wide range of manufacturers Charity number: 224742
Mobility aids, daily living products, and continence supplies Telecare and telehealth equipment
Why not take a look today at www.disabledliving.co.uk/online-shop Telephone: 0161 607 8200 Charity number: 224742
REMAP HELPS JAMES FIND
his voice
JAMES IS FOUR YEARS OLD AND HAS VOCAL CORD PALSY WHICH MEANS THAT HE CAN ONLY SPEAK WITH A VERY QUIET VOICE, DUE TO A PARALYSED VOCAL CORD
I
t is difficult to hear him, particularly when there is any background noise, such as at school, in the car and when out and about in his wheelchair. Luckily, James’ mum had heard of Remap and before too long one of their volunteers, Niall McCarroll, a volunteer from Remap Berkshire had designed and made a small custombuilt microphone, pre-amplifier and speaker for James to wear on a belt. This new gadget was a great success - James could now communicate without straining his weak vocal cords. James’ mother said: “We are still getting on really well with the voice amplifier. By far the biggest impact
has been at school. He is talking with his peers now and is happy to speak up in class. He can be heard in the classroom and so can contribute independently to discussions and whole group work, rather than having to rely on the voice of his teaching assistant. Amazingly the speech therapists have actually noticed an improvement in his voice quality since he’s been wearing it consistently, probably because he’s no longer straining it, trying to make himself heard. It’s beyond what we’d hoped for!” You can watch a film of James at https://www.remap.org.uk/2453/ james-speaks-out
Amazingly the speech therapists have actually noticed an improvement in his voice quality since he’s been wearing it consistently – It’s beyond what we’d hoped for!
Remap is a UK charity that helps disabled people of all ages to live more independent lives by designing and making customised equipment free of charge. For examples of Remap work, visit the case studies section of their website. To find out more, simply contact the national office or find your local group through the website. For more information, call 01732 760209 or visit www.remap.org.uk
44
INVENTOR PUSHING AHEAD
WITH SPECIAL NEEDS
trike design
A PART-TIME INVENTOR WHOSE DESIGN FOR A TRIKE FOR SPECIAL NEEDS CHILDREN CAUGHT PUBLIC ATTENTION EARLIER THIS YEAR SAYS PROGRESS IS BEING MADE TO BRING THE DESIGN TO A GLOBAL MARKET
L
es McMahon and his trike shot to prominence in June when the media reported he is working with designers at Insync Bikes in Manchester owned by India’s Hero Cycles, the world’s biggest bike maker by volume, to perfect the trike he has engineered for his young neighbour.
Les said the trike, which will be much cheaper than expensive alternatives already on the market, is undergoing stringent testing at Hero’s site. Once plans are finalised, it will be made available in a flatpack kit or as a downloadable design under Hero’s Insync family bike brand and will cost in the region of £500.
Les made the original trike in his garden shed to enable 13-year-old neighbour Lewis Flint to get out on the roads with his parents, Dawn and Andy. Les’ solution involves a ‘sidecar’ fitted to a bike, with a ramp to roll on the wheelchair.
45
OT REPORT FOCUSES ON CHILDREN’S POTENTIAL
T
he Royal College of Occupational Therapists (RCOT) has launched a report Occupational Therapy: ‘Unlocking the potential of children and young people’ which outlines the role that Occupational Therapists play in improving the lives of children and young people with physical, learning and mental health needs. The report demonstrates through a series of case studies, how Occupational Therapists play a crucial role in helping children and young people participate in the activities that they want or
need to do at home, at school or work and during their free time. The report shows how Occupational Therapists can: • Provide routines to promote physical and mental health into children’s daily routines and activities • Develop partnerships between parents, teachers and the community to address children’s needs early in their education • Work across traditional service boundaries to address children’s physical and mental health needs
•
Adopt a strengths-based approach that fosters self-management and independence • Anticipate the changing needs of children, young people and their carers to facilitate positive transitions The report also calls for children’s services to be designed so that children and young people with additional learning and support needs (including mental health) can access occupational therapy skills and expertise when they need it.
S E U S IS E R U T U F E H T S DON’T MIS E IN Z A G A M Z T L U D A O OF KIDZ T 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.
Just visit...
www.kidzexhibitions.co.uk 46
MEDPAGE MEDPAGE SPECIALIST CARE SOLUTIONS MEDPAGE MEDPAGESPECIALIST SPECIALIST SPECIALISTCARE CARE CARESOLUTIONS SOLUTIONS SOLUTIONS Celebrating Celebrating 35 35 years years of of creative creative innovation innovation Celebrating Celebrating35 35years yearsofofcreative creativeinnovation innovation EPILEPSY EPILEPSYCARE CARE EPILEPSY EPILEPSYCARE CARE
SEIZURE SEIZUREDETECTION DETECTION SEIZURE SEIZUREDETECTION DETECTION
MEMORY MEMORY&&LEARNING LEARNINGAIDS AIDS MEMORY MEMORY&&LEARNING LEARNINGAIDS AIDS GPS GPSLOCATION LOCATIONTRACKERS TRACKERS GPS GPSLOCATION LOCATIONTRACKERS TRACKERS WIRELESS WIRELESSVIDEO VIDEOCAMERAS CAMERAS WIRELESS WIRELESSVIDEO VIDEOCAMERAS CAMERAS APNOEA APNOEABREATHING BREATHINGMONITORS MONITORS APNOEA APNOEABREATHING BREATHINGMONITORS MONITORS HEALTH HEALTHFITNESS FITNESSSMARTBANDS SMARTBANDS HEALTH HEALTHFITNESS FITNESSSMARTBANDS SMARTBANDS RADIO RADIOCONTROLLED CONTROLLEDSECURITY SECURITY RADIO RADIOCONTROLLED CONTROLLEDSECURITY SECURITY Wi-Fi Wi-FiCONNECTED CONNECTEDMONITORING MONITORING Wi-Fi Wi-FiCONNECTED CONNECTEDMONITORING MONITORING AUTISM AUTISMCARE CARE AUTISM AUTISMCARE CARE
Visit Visit Medpage on Stand D1 Kidz to Adultz North Visit VisitMedpage Medpage Medpageon on onStand Stand StandD1 D1 D1Kidz Kidz Kidzto to toAdultz Adultz AdultzNorth North North Medpage MedpageLimited LimitedT/A T/AEasylink EasylinkUK UK Medpage MedpageLimited LimitedT/A T/AEasylink EasylinkUK UK T:T:01536 01536264 264869 869| |E:E:sales@easylinkuk.co.uk sales@easylinkuk.co.uk T:T:01536 01536264 264869 869| |E:E:sales@easylinkuk.co.uk sales@easylinkuk.co.uk W: W:www.easylinkuk.co.uk www.easylinkuk.co.uk W: W:www.easylinkuk.co.uk www.easylinkuk.co.uk MedPageLtd/ MedPageLtd/ @MedPageltd @MedPageltd MedPageLtd/ MedPageLtd/ @MedPageltd @MedPageltd
Bring Bringthis thisadd addtoto Bring Bringthis thisadd addtoto our ourstand standand and our ourstand standand and receive receiveaa15% 15% receive receiveaa15% 15% discount discounton onShow Show discount discounton onShow Show sale saleitems items sale saleitems items Scan Scanforfor Scan Scan forfor website website website website
Medpage MedpageLimited Limitedhas hastraded tradedinin Medpage Medpage Limited Limited has hastraded traded inin the thehealthcare healthcare industry industry for forover over the healthcare healthcare industry industry over 35the 35years, years, specialising specialising infor inforover 35 35 years, years, specialising specialising in in developing developingtechnologies technologiestotoaid aid developing developing technologies technologies to to aid aid care careofofpeople peoplewith withEpilepsy, Epilepsy, care care ofofpeople people with withand Epilepsy, Epilepsy, Austism, Austism, Dementia Dementia and Senior Senior Austism, Austism, Dementia Dementia and and Senior Senior Care. Care. Care. Care. Epilepsy Epilepsy Epilepsy Epilepsy Medpage Medpagehave havemanufactured manufactured Medpage Medpage have havemanufactured manufactured seizure seizuredetecting detecting products productsforfor seizure seizure detecting detecting products products forfor over over2525years. years.Our Our products products over over 25 25years. years. Our Ourwith products products are aresold sold worldwide worldwide with anan are are sold sold worldwide worldwide with with anan unrivalled unrivalledreputation reputationforfor unrivalled unrivalled reputation reputation for for accurate, accurate,affordable affordableseizure seizure accurate, accurate, affordable affordableseizure seizure detection. detection. detection. detection. Autism Autism Autism Autism
Medpage Medpageactively activelypromotes promotes Medpage Medpage actively actively promotes promotes the theuse useofof Assistive Assistive the the use useofofAssistive Assistive Technology Technology totoaid aidpeople peopleliving living Technology Technology to to aid aid people people living living with withAutism. Autism. Our Our range range ofof with with Autism. Autism. Our Our range range of of products productscan canhelp helpwith: with: products products can canhelp help with: with: Communication, Communication, Visual Visual Communication, Communication, Visual Visual Scheduling, Scheduling,Motivation Motivation& & Scheduling, Scheduling, Motivation Motivation & &and Reward, Reward,Video Video Modelling Modelling and Reward, Reward, Video Video Modelling Modelling and and Independent IndependentLiving. Living. Independent IndependentLiving. Living. Dementia Dementia Dementia Dementia AtAtthe theAlzheimer’s Alzheimer’sShow Showinin At At the the Alzheimer’s Alzheimer’s Show Show inin London, London,Medpage Medpagelaunched launched London, London, Medpage Medpage launched launched the theMemRabel MemRabel2i,2i,a adevice devicethat that the the MemRabel MemRabel 2i, 2i, a a device device that introduces introducesthe thepotential potentialofof that introduces introduces the the potential potentialof Smartphone Smartphone technology technology toof to Smartphone Smartphone technology technology to create createdaily dailyschedules, schedules, to create createdaily dailyschedules, schedules,
medication medicationand andimportant important medication medication and and important important appointment appointment reminders. reminders. appointment appointmentreminders. reminders. Senior SeniorCare Care Senior SeniorCare Care With Witha arapidly rapidlyageing ageing With With a a rapidly rapidly ageing ageing population populationand andlack lackofofpublic public population population and andlack lack ofadequate ofpublic public funding fundingtotomaintain maintain adequate funding funding to to maintain maintain adequate adequate care careforforthe theelderly, elderly, care care forforthe theelderly, elderly, independent independent living livingare arethe the independent independent living living are are the the buzz buzzwords wordsforforthis thisdecade. decade. buzz buzz words words forfor this this decade. decade. Medpage Medpage are are well well placed placed toto Medpage Medpage are are well well placed placed toto offer offerself-carer self-carerand and offer offer self-carer self-carer and and professional professional carer carer technology technology professional professional carer carer technology technology solutions solutionsfor: for:Home Home safety, safety, solutions solutions for: for: Home Home safety, safety, falls fallsdetection, detection,Alzheimer’s Alzheimer’s falls falls detection, detection, Alzheimer’s Alzheimer’s support support aids aidsand and home homecarer carer support support aids aids and and home home carer carer support supportproducts. products. support supportproducts. products. 47
0 S 1 U B H E D RT SE AN NO ST Z N D O KI AT
The considered choice in specialist adjustable beds for younger people Delivering quality, value and peace of mind
Mascot Mk2:
• Market-leading paediatric bed specialist
The considered choice because it is future proofed, saving money when needs change. The only fully modular bed that can be retrospectively changed from 4 to 8 doors with options to increase the height up to 120cm
• Widest range of adjustable beds and cot beds • Beds available from stock • Assessments based provision with experienced Trusted Assessors
Bespoke, precision padding
• Safe, robust and long-lasting quality products • Outstanding value for money • 14-day Suitability Guarantee • Fully inclusive 3-year warranty • Working in partnership with Newlife • Will beat any like for like quote
Hannah
Olaf
Freephone: 0800 834654
Home and Away
Lotte
Email: info@theraposture.co.uk www.theraposture.co.uk
Need a free emergency cot or bed loan?
Scan for an information guide
We provide the Emergency Equipment Loan Services on behalf of Newlife, call us for more details
PROUD TO WORK WITH THE NEWLIFE FOUNDATION FOR DISABLED CHILDREN
YOUR INDEPENDENCE, OUR COMMITMENT
Theraposture Limited, Kingdom Avenue, Northacre Industrial Park, Westbury, Wiltshire. BA13 4WE. Open: Monday – Friday, 8:30am–5:30pm. Answerphone messages can be left at all other times