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kidz

to

ADULTZ

MAGAZINE

ISSUE 3 / MAY 2019

Win! a family visit to

Belfast! IN THIS ISSUE... PARALYMPIC TARGET FOR YOUNG CHAMPION EQUIPMENT CRISIS HIGHLIGHTED HOISTING CHILDREN SAFELY COUNSELLING ADVICE ON OFFER 100 YEARS OF RESIDENTIAL EDUCATION


RMS specialise in the supply and manufacture of a comprehensive range of rehabilitation equipment Introducing our new classroom chair, Buddy and the Piper comfort, hybrid Semi adjustable standard rehab buggy. We offer free demonstrations and no obligation assessments on our full product range, to arrange one with your local Product Specialist please call 01795 477280

Social icon

Rounded square Only use blue and/or white. For more details check out our Brand Guidelines.

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@RMSLimited • 01795 477280 • sales@rms-kent.co.uk

www.ineedawheelchair.co.uk


Welcome!

WELCOME TO THE THIRD ISSUE OF OUR BRAND NEW MAGAZINE....

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e continue to receive very positive comments about our new magazine and so if you are one of the readers who has sent us feedback, thanks for that. We are always keen to hear what you think and feel free to get in touch with your suggestions for future issues. In this issue, the team at Leckey are giving one lucky family the chance to visit them at their facilities in Lisburn, Northern Ireland. The prize includes flights, an overnight stay in a local hotel and tickets to a local attraction. We have a variety of articles and advice including details of an emergency equipment loan service, an audio books charity with over 7,500 titles on offer and a look at a residential education facility that was founded by a Lord Mayor of the City of London in 1908. If you do have a story that you would like to tell us all about for the next issue, which will appear in July, then please do get in touch by contacting us at magazine@disabledliving.co.uk

CONTENTS... Equipment crisis highlighted............................6 Graduation Success.............8 Hoisting safety.................. 14 Molly the doll inspires...... 18 EHPC explained................. 24 Understanding bowel problems............................ 26 Ettie’s story........................ 30 100 years of success........ 34 Paralympic target............. 38 Direct payment focus....... 42

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions Disabled Living #kidztoadultz

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

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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

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NEWLIFE HIGHLIGHTS

equipment crisis

FOR DISABLED CHILDREN

IN NOVEMBER LAST YEAR, NEWLIFE THE CHARITY FOR DISABLED CHILDREN PUBLISHED A REPORT EXPOSING MAJOR AND UNLAWFUL FAILINGS SURROUNDING THE PROVISION OF SPECIALIST EQUIPMENT TO SOME OF THE UK’S MOST VULNERABLE CHILDREN

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he report, Equipment Crisis for Disabled Children, highlighted some of the key reasons children are denied specialist equipment such as walking frames, protective car seats and specialist beds. “All children have the right to be safe and live without fear or pain. A right to learn, to develop skills, talents and abilities and a right to live a full life, without disadvantage,” explains Sheila Brown, OBE and CEO of Newlife. “Yet every day, here in the UK disabled and terminally ill children are failed and routinely let down because of a hidden equipment crisis.” According to the Family Resources Survey, commissioned annually by the Department for Work and Pensions, 8% of the children in the UK have a disability. This means there are now more disabled children than ever before - 1.1 million to be precise. Medical advances mean children born with conditions or who acquire disabilities because of an illness or accident are surviving, albeit with very complex needs. This

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translates directly to them needing greater support and, in many cases, multiple pieces of equipment. Sheila continues: “There are many complex reasons why children are being failed. Our report highlights four distinct areas which, if addressed, could radically improve equipment provision for disabled children.”

Every day, here in the UK disabled and terminally ill children are failed and routinely let down

One such barrier preventing children from getting essential disability equipment is the widespread use of blanket bans as a means to deny children a particular piece of equipment –

under any circumstances. The most prevalent use of a blanket ban is the widespread refusal by councils to fund specialist car seats, despite there being clear medical or safety needs identified by a qualified healthcare professional. Newlife, through a Freedom of Information request, uncovered 83% of local authorities in England have a blanket ban that prevents provision of specialist car seats to disabled children. Applying a blanket ban is unlawful, and is one of the areas Newlife is campaigning for change so the lives of disabled children are not being put at risk because of a ‘we don’t do’ mentality. Two-year-old Rhys Dean from Milton Keynes, was at risk of choking to death every time he travelled by car. But because Milton Keynes Council has a blanket ban on providing car seats to disabled children Rhys’ family had to struggle on with a standard car seat, putting him at risk of choking or worse. Rhys has spent two thirds of his life in hospital; enduring 14 surgeries because of a genetic condition called Noonan’s Syndrome, which has


caused a life-limiting heart defect. He must be kept fully supported in an upright position at all times and travelling in a standard shop bought car seat was putting his life in peril. “Rhys can vomit up to 40 times a day,” explains his mum Stacey. “The two hour journey to Southampton hospital regularly takes four hours because we’re constantly having to stop the car to prevent him from choking. “It got to the point when I didn’t want to take him out in the car anymore, not even to hospital appointments, despite his Dad, Brad, sitting in the back with him and propping him up.” Thankfully Newlife had funds in the bank to buy Rhys a specialist protective car seat which was approved and ordered on the same day the application was received by the charity. Stacey added: “The specialist seat keeps him fully supported now and has drastically reduced the risk of him choking. Most importantly the seat rotates and tilts so I’m able to quickly release him if he does start to choke and become distressed.” Because there isn’t currently local authority or health-run services that can deliver specialist equipment in an emergency, Newlife established its Emergency Equipment Loan services in 2015 so children in crisis can get the life-saving or life-changing equipment they need, when they need it. “The health and social care system is simply unable to respond quickly enough to urgent calls for specialist equipment for disabled children,” continues Sheila. “Our Emergency Equipment Loan service is truly unique – there is no other service of this kind in the UK. Without it families have to wait months, even years to get specialist equipment. We act on the information we receive, the same day, and aim to deliver within 72 hours. Last year the charity rescued 1274 children from crisis situations across the UK – an increase of 22% on the previous year. Every child was

Newlife has been able to help children like Rhys

at serious risk of harm, their lives put on the line because of a lack of specialist equipment and a health and social care system unable to respond quickly enough. Sheila Brown concluded: “This unique service means children, like Rhys, can get specialist disability equipment in an emergency. Unfortunately we’ve seen demand drastically increase over the last 12 months and are receiving more and more calls from healthcare professionals and families desperate for urgent disability equipment.”

Newlife relies on donations to ensure it has enough equipment in its emergency suite and funds to fast-track the approval of grants where there is a clear risk to a child’s safety and is desperately calling on local communities and businesses to support its Emergency Crisis Appeal. If you can help or know an individual, group or company that can support raising funds for the Emergency Crisis Appeal, please call 01543 431 444 or visit: www.newlifecharity.co.uk/donate

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Talk Time founders, Seonaid Cooke and her son Joshua

COUNSELLING ADVICE ON OFFER AFTE

R

graduation success

TALKTIME SCOTLAND IS A UNIQUE SERVICE OFFERING FREE COUNSELLING TO ANY YOUNG PERSON LIVING IN SCOTLAND WHO IS PHYSICALLY DISABLED OR HAS A LONG-TERM PHYSICAL ILLNESS

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t was set up in 2014 by Seonaid Cooke and her son Joshua Hepple, who has cerebral palsy, to celebrate Joshua’s graduation in Law from Stirling University. When he was young Josh went to a mainstream secondary school in Edinburgh but he struggled to fit in because of his disability which affects his speech and mobility. As a wheelchair user, he felt socially isolated and was a rather unhappy teenager. His parents never knew how sad he was as he kept it to himself. They also never thought that he would be able to live independently or go to university as they had no idea that money was available from the state to pay for personal assistance. However, Joshua did well and secured a place at Stirling University to study Law where he lived on campus in student accommodation which had been adapted for his needs. Once he arrived at Stirling, he

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was able to access the university counselling service which he used regularly throughout his studies. He learnt to understand his moods and work out strategies to deal with negative emotions which can sometimes feel overwhelming. The counselling also helped to build up his confidence so that he felt able to engage in student social life in a way that he had never done while at school, building relationships and getting involved in student politics. A few days after graduation, Joshua and his mother sat down and talked about setting up some kind of charity that would help to make a difference to other young disabled people. Joshua felt that if he had been able to speak to someone in confidence about how he was feeling as a vulnerable teenager, it would have been of immense help. As a result of this conversation, the idea for TalkTime came about. Initially just offering professional

one-to-one counselling from its base in Leith, the charity has now expanded to offer online and telephone counselling to anyone aged 12-25 living in Scotland who is physically disabled or has a longterm physical illness. The charity has now helped dozens of young people with a wide range of conditions from cerebral palsy to muscular dystrophy, spina bifida and hidden disabilities such as diabetes, epilepsy and severe asthma. Last year its work was commended in a motion in the Scottish Parliament which was signed by 33 MSPs. If you would like to speak in confidence to a professionally trained counsellor about how your illness or disability is impacting your life, don’t hesitate to get in touch by phone or email or through the Facebook page. Visit www.talktimescotland.co.uk or email talktimescotland@gmail.com. You can also call 07774 210104.


MEDPAGE SPECIALIST CARE SOLUTIONS Celebrating 35 years of creative innovation EPILEPSY CARE

SEIZURE DETECTION

AUTISM CARE

MEMORY & LEARNING AIDS

Medpage will exhibit at Kidz to Adultz West & Kidz to Adultz North 2019

Medpage Limited T/A Easylink UK T: 01536 264 869 | E: sales@easylinkuk.co.uk W: www.medpage-ltd.com MedPageLtd/ @MedPageltd

At SMART Wheelchairs we are able to meet and accommodate the needs of some of the most

10% Discount on telephone orders Quote Kidz South when ordering

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complex disabilities. Our aims and objectives are to provide as much independent access for all of our customers by using the latest technology and equipment available. Here at SMART we believe we’re best equipped to

WE ARE THE SOLE UK SUPPLIER OF KARMA EUROPE POWERCHAIRS

deal with your needs. From electric and manual wheelchairs, specialist seating systems that deal with a wide range of conditions to control systems that allow the user to control anything from a light switch to a PC or even a Sky TV Box. We realise that everybody is an individual and that is why all our chairs are tailored to you, the individual. Our aim is to provide each client with maximum comfort and functionality. You can rest assured that SMART will only recommend the right wheelchair or equipment that is best suited for our customer’s needs.

S MART Wheelchairs Limited 01553 404200 • info@smart-wheelchairs.co.uk • www.smart-wheelchairs.co.uk

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Wi

n!

WIN A FAMILY VISIT

TO LECKEY AND THE EXCITING

city of Belfast!

TO CELEBRATE THE LAUNCH OF OUR NEW PRODUCTS AND NEW BRANDING, THE TEAM AT LECKEY ARE GIVING ONE LUCKY FAMILY THE CHANCE TO VISIT THEM AT THEIR FACILITIES IN LISBURN, NORTHERN IRELAND

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he winners will get the opportunity to visit the company’s innovation hub, where all of their best ideas are conceived! You will meet their design and clinical teams who work tirelessly to ensure that all of their products meet the needs of the children, their families and

Titanic Belfast is the World’s largest Titanic visitor experience

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therapists. You’ll also go on a tour of the production facility to see how the products are manufactured and despatched all over the world. On top of this, you will be treated to an overnight stay in Belfast and tickets to a local attraction. To enter, visit the new Leckey Facebook page, like the page and post Visit Leckey with your family name. The winner will be chosen at random on 31st July 2019.

Terms and Conditions: Total prize up to the value of £500 to include flights, overnight stay in a local hotel and tickets to a local attraction. The prize is non-transferrable and must be redeemed by 31st July 2020. The prize is for a family of up to 2 adults and 3 children.


AMBITO EDUCATION A Salutem Group Company

Ingfield Manor – fulfilling potential through Conductive Education We are a Centre of Excellence for Conductive Education, for children and young people who have neurological motor impairments. We are a non-maintained day and residential special school for children and young people between the ages of 3 and 19 years. We aim to provide an exceptional learning environment for children and young people who have neurological motor impairments, such as cerebral palsy. Some of our students also have additional needs like visual impairment and more complex medical needs. Our curriculum is stimulating and diverse and delivered through Conductive Education, and we are acknowledged as one of the leading centres for this education system in the UK. Our staff work collaboratively using a transdisciplinary team approach.

This approach involves professionals sharing roles, with blending of skills, teaching and learning. Our qualified nursing team are here to enable the children and young people at the school to access all aspects of the curriculum by ensuring that their many health care needs are met throughout the school day. We also run the Ingfield Manor School for Parents, which provides a specialist service for families of children with cerebral palsy and other motor learning difficulties. We support families with babies and children under five years of age. Parents and children learn daily living skills together using the principles of Conductive Education.

01403 782294 • ingfield.manor@ambitoeducation.co.uk Ingfield Manor School, Ingfield Manor Drive, Five Oaks, Billingshurst, West Sussex RH14 9AX www.ingfieldmanorschool.co.uk

Craig-y-Parc School – a place to grow We are a specialist school that offers flexible placements to children and young people aged 3 to 19 years old, with complex support needs, including physical and sensory impairments, and severe or profound and multiple learning difficulties (PMLD). Through our nurturing environment, and multi-disciplinary approach across education, nursing, residential and therapy, we guide our students to realise their full educational and personal potential. We also have a specialised team of Conductive Educators to aid our students in developing their daily living skills. Students can access a variety of specialist on-site facilities including a hydrotherapy pool, sensory room and assistive technology hub, as well as outdoor learning areas and a woodland walk set within our 33 acre site.

02920 890397 • craigyparc@ambitoeducation.co.uk Craig y Parc School, Heol y Parc, Pentyrch, Cardiff CF15 9NB www.craigyparc-school.co.uk

Welcome to Ty Cwtch, our Children’s Home at the Craig Y Parc School site At our residential children’s home, we make sure the young people we support get the most from every experience and can find the best ways to improve their physical, cognitive and communication skills. This can be through one to one support or may include the benefit of a team of specialist staff. Ty Cwtch can accommodate up to 16 young people in twobedded bedrooms (single occupancy is available). We offer a variety of packages, each tailored to the individual needs of the young person. Whether you require all year accommodation or are here for short breaks, you can enjoy the same level of personalisation, interaction and choice of fun activities.

02920 890397 • kristian.cousins@ambitoeducation.co.uk Craig y Parc School, Heol y Parc, Pentyrch, Cardiff CF15 9NB www.craigyparc-school.co.uk 11


WHAT’S NEW LARGER BATH FROM ABACUS

new...

The new two-metre long Gemini 2000 is the largest and longest specialist bath available with variable height functionality and an integrated platform. The generous bathing capacity ensures space appropriate bathing for disabled children as they develop and grow into adults. The hi-lo powered movement provides safe working heights for carers as excessive bending can be avoided when providing personal care. The platform reduces awkward transfers, especially when the bather is wet, and allows users to remain warmer through a faster drying and changing process. To maximise wellness for both bather and carer, the Gemini 2000 also incorporates pioneering BioCote antimicrobial technology which protects against Influenza H1N1, E.coli, Salmonella and antibiotic resistant MRSA. Integrated during the manufacturing process, invisible silver-ions cannot be wiped or worn away, providing 99.9%, 24/7 protection. For more information, visit www.abacushealthcare.co.uk

NEW MOBILE STANDING FRAME LAUNCHES The new R82 Rabbit Up mobile standing frame was unveiled at the Kidz to Adultz Middle show. The new prone frame provides both static and mobile standing. Suitable for use indoors and out, it includes self-propel removable wheels for independent mobility. The wheels have been considerately designed with closed push rims and an adjustable camber angle for easier propulsion – enhanced by a narrow frame for better manoeuvrability. When a stationary position is required, the wheels can quickly be removed by a caregiver or parent, so ergonomic access to school desks and play tables is possible. The Rabbit Up facilitates eye level engagement promoting greater participation and inclusion. Through its adaptable prone support, children benefit from standing therapy and the ability to enhance motor skills and upper body muscle function. This exercise is increased with the addition of self-propel wheels whilst safety is assured with four stabilising castors. For more information, visit www.r82.co.uk

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SUCCESSFULLY HOISTING CHILDREN:

OUTLINING SUITABLE EQUIPMENT FOR

maximum safety

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BY COLIN WILLIAMS, OVERHEAD HOISTS SPECIALIST, ETAC R82

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here are many scenarios where hoisting disabled children can be challenging. However, by focusing on suitability and safety through the correct choice of equipment and techniques, movement of young users can be more efficient and positive.

WHY USE A HOIST?

Hoists and slings greatly improve care and transfer efficiency. They reduce the effort required to move children who have limited mobility, commonly young wheelchair users. Risk of back injury is minimised for carers and parents as manual lifting, carrying and lowering is eliminated – plus there is less chance of falls for users, especially in the bathroom. Dignity is enhanced and wellbeing improved for users and their surrounding family as inclusion is

easier to achieve. Thorough training to ensure correct use of equipment is always essential.

MOBILE OR CEILING TRACK?

It is important to consider what type of hoist will provide the most effective transfer in the available space eg. from bed, chair, bath, toilet and wheelchair. Mobile hoists can provide flexibility throughout a house, nevertheless ample floor clearance is required and manoeuvring over carpet can be challenging. Whereas overhead ceiling tracks offer permanent solutions that are not so dependent on floor space however design, planning and installation is required. Ultimately, the right hoist is only ascertained following full assessment of individual care needs by an OT and equipment specialist.

Aesthetics of either systems may also come into consideration although several modern track systems can be fitted flush to the ceiling hence reducing visual impact.

THE IMPORTANCE OF APPROPRIATE SLING BAR SELECTION

When the right hoist has been identified, the most effective sling type and lifting set up should be considered for individual needs. For example, selecting the right sling bar is essential so that a child feels reassured. Sling bars join the lift motor belt to a sling and

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are available in different sizes and shapes. By carefully considering this piece of equipment the effectiveness of hoisting can be greatly improved. Factors such as child behaviour, postural control, head clearance, transfer destinations etc. can all affect whether a two or four-point sling bar is selected. The number of sling fixations points changes the shape of the sling when deployed which has an impact on movement and support.

CONSIDERING THE TRANSFER TASKS

Hoist and sling selection is not only dependent on space and location, but care and task. It is essential to consider the activities from which transfers will take place. Maybe low access at floor level is required after therapy and play or maybe access to a bath is required? In a bathroom scenario, questions need to be asked such as: What is the bath like? Does it have hi-lo functionality? Is there

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clearance underneath for mobile hoist wheels? Can it be accessed from overhead via a sling? Will a stretcher sling fit? Will the user be seated or supine? All these factors and more

Selecting the right sling bar is essential so that a child feels reassured will affect pick-up points which is also critical with other situations such as over a bed. In this instance, a typical distance of 900mm from the headboard is regarded as the optimum location to hoist a user.

SUMMARY

This article only provides very brief details about hoisting equipment

for children. If you are seeking more in-depth guidance for your existing hoist or are looking to choose a new product, it is always best to gather specialist advice from therapists, moving and handling practitioners and specialist manufacturers. There are many factors to consider however with the support of professionals, assisted safe and pleasurable transfers are possible for disabled children – enhancing confidence and ensuring care is not compromised. Reading relevant and respected publications such as the National Back Exchange publication: ‘Manual Handling of Children’ by Pat Alexander and Carole Johnson, will also offer valuable insight. A specialist hoist manufacturer, such as Etac which provide Molift hoists, will be able to provide further guidance: https://www.etac. com/en-gb/products/hoists-andslings/


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inspiration MOLLY THE DOLL PROVES

FOR REASSURING BOOK

JULIA O’CONNOR IS THE INTEGRATED SERVICES COORDINATOR AT AN OUTSTANDING SPECIAL NEEDS SCHOOL. SHE TEACHES MOVING, HANDLING AND POSITIONING OF CHILDREN WITH COMPLEX NEEDS IN SPECIALIST THERAPEUTIC EQUIPMENT

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ith 17 years’ experience of working in special needs schools, she is passionate that all children follow their postural management plans throughout the day, to enable them to feel comfortable prior to learning. Julia teaches over 100 staff a year and works hands on delivering therapeutic programmes to children and strongly believes that every child, regardless of any disability, should achieve the best in everything they do. Julia has produced a book entitled Jolly Molly Dolly, which is a simple rhyming book aimed at special needs children, siblings and mainstream children. It’s about a typical day in the life of a special needs child who needs to access a range of therapeutic equipment in a school setting. The book includes Molly accessing equipment such as: a wheelchair, a sling, a seat system, a standing frame, a wedge, a walking frame, specialist footwear and splints. Julia told us: “Molly is our school, child sized, therapy doll. She is used to demonstrate physiotherapy exercises and therapeutic equipment to our children. Our physiotherapy team often have to carry out specialist assessments with the children and one of the assessments is called the North Star Assessment, aimed to be used for children with muscular dystrophy. For some of the children, these assessments involve getting up off the floor, jumping, hopping, standing on one leg, climbing up steps, rolling over, running etc. Molly is used to demonstrate how to do all the activities first and the children copy Molly. Sometimes we have competitions to see if they can stand on one leg for a longer period of time than Molly, or run as fast as Molly. As Molly is child size, it is easier for the children to observe her position than it is to observe an adult demonstrating.” She added: “Molly is used for demonstrating to children first going into a sling. The children either watch or help to put her on the sling and then they press the buttons on the hoist handset to lift her with the hoist. She is also positioned in

As Molly is child size, it is easier for the children to observe her position than it is to observe an adult demonstrating standing frames and walking frames or sits in seat systems.” Julia says that the reason she wrote the Jolly Molly Dolly book is because very often children, parents and siblings can feel very apprehensive about new equipment. “It is a very big step to go from having a person lifting them, who sees them as the most precious child, to being positioned in a sling and hoisted by a machine into pieces of therapeutic equipment” she says. “Just having a carry bar from a hoist in close proximity to their faces can be a frightening experience for a child who is new to hoisting, or may have unpredictable movements.

Children are often understandably apprehensive about going into a standing frame, a seat system, a walking frame, on a changing bed or into any specialist equipment. The Jolly Molly Dolly book demonstrates that moving and handling and accessing equipment doesn’t have to be a scary experience. I wanted the children to see it as a fun and positive experience with many benefits.” Julia also wrote the book because she says that she often has mainstream children visiting the school. “In the Early Years class, we have regular mobile children who attend inclusion sessions. The book assists in giving them a wider understanding and acceptance of our children’s needs. It demonstrates that postural management is part of normal, everyday life in a special needs school and seeing children in pieces of equipment doesn’t mean that a little boy or little girl can’t be an amazing friend and be great fun, just like themselves.” The Jolly Molly Dolly book is available on Amazon at the cost of £4.99.

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Photo by Mpho Mojapelo on Unsplash

RESEARCH STUDY LOOKING FOR

s t n a p partici

A TEAM AT COVENTRY UNIVERSITY IS CONDUCTING A RESEARCH STUDY LOOKING AT THE EFFECTS OF SLEEP ON BEHAVIOURS IN CHILDREN WITH INTELLECTUAL DISABILITIES

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he study is funded by the charity Baily Thomas Trust and the team is looking for families to take part in the research study which is approved by Coventry University Ethics Committee. They are looking for children aged 5-11 with special educational needs, who live in or around Coventry, to

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take part in a study. They want to see whether good and bad sleep has different effects on children’s ability to solve problems and pay attention. Those taking part will measure sleep at home using equipment, and the team will visit your child to do some fun tasks when at the same

time your child will receive a book or toy as a thank you gift. Six months later you will be asked to repeat the process. For more information please contact Dr Sheena Au-Yeung at sheena.au-yeung@coventry.ac.uk or call 024 7765 9120.


“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

kidz

It’s showtime!

ADULTZ

NORTH

EVENTS

WALES & WEST

Thursday 14th November 2019 EventCity, Manchester

MIDDLE

to

SAVE THE DATES FOR OUR FUTURE EVENTS...

NEW DAY, NEW DATE!

Wednesday 4th March 2020 Ricoh Arena, Coventry

Thursday 4th July 2019 Thornbury Leisure Centre, Bristol

SOUTH

Thursday 7th May 2020 Farnborough International Exhibition & Conference Centre, Farnborough

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OVER

7,000 titles

FROM AUDIO BOOKS CHARITY

THERE CAN BE MANY CHALLENGES TO LIVING WITH A DISABILITY OR ADDITIONAL NEEDS, BUT READING SHOULDN’T BE ONE OF THEM

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hat if you can’t hold a book or read print? Well, audiobooks are a great solution, providing an excellent way to relax and relieve stress without the difficulty of concentrating or holding up a book for long periods. If you want to try audiobooks, then Listening Books can help. It is a national UK charity offering a postal and online audiobook library service for anyone who finds that additional needs or a disability impacts on their ability to read and enjoy books. Their library has over 7,500 titles for children and young adults,

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including popular authors such as J. K. Rowling, David Walliams, Terry Pratchett, Julia Donaldson, Roald Dahl, Jeff Kinney and many more. Audiobooks are available to download through an app available for most tablets and smartphones, to stream online, or sent direct through the letterbox on MP3 CD with no postage costs or late fees. One member wrote to the charity to say: “A quick follow up to let you know my son is delighted with the ability to stream stories. He is already about half way through The Philosopher's Stone and it is great

to see him enjoying listening to the story without the stress of needing to read it for himself. I hope this helps him discover the joy of books.” Membership starts from just £20 per year to access up to 10 audiobooks a week. Free memberships are also available for anyone who would find it difficult to cover this annual fee. For more information about how to become a member, go to www.listening-books.org.uk


th Disabled Living for in partnership with Shop online ducts to make with life Disabled easier Living for equipment and products to make life easier rtnership with ...in partnership with What’s the advantage?

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The best of both worlds... you choice from a wide range of manufacturers including mobility When you living shop online with Disabled aids, daily products, and Living for equipment and products to make life easier you or your clients can speak to continence suppliersortogether with Occupational Therapists Continence Specialists for free impartial help andand advice, ensuring unnecessary purchases are not made. telecare telehealth equipment.

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Why not take a look today at www.disabledliving.co.uk/online-shop Charity number: Telephone: 0161 224742 607 8200 Photo by Markus Spiske on Unsplash

Charity number: 224742

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DO YOU HAVE AN EHCP? ARE YOU FEELING THE BUDGET CUTS? CAN THE NATIONAL HEALTH & SOCIAL CARE PILOT HELP? BY RACHAEL ALLISON, SOLICITOR, BOYES TURNER LLP

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he Children and Families Act 2014 introduced Education Health Care Plans (EHCP) the aim being to bring together education, health and social care services for children and young people extending the potential to deliver support until the age of 25.

OLD PRACTICE

The content of any EHCP pre-dating 3 April 2018 could only be appealed to the Special Educational Needs and Disability (SEND) Tribunal against the educational aspects of their EHCPs. The Tribunal had no jurisdiction to consider health and social care aspects of the EHCP.

TRIGGER FOR CHANGE

A 2-year national trial has been introduced with the aim that a collaborative and cost effective approach for delivery and provision of necessary services for children and young people in education is necessary.

THE PILOT

The pilot only applies to Local Authority (LA) decisions made and EHCPs issued or amended on or after 3 April 2018. The trial extends the power of the Special Educational Needs and Disability Tribunal by allowing it to make non-binding recommendations on the health and social care parts of the EHCP. Existing powers remain in that the Tribunal can order health and

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social care provision that provides education or training (i.e. special educational needs) under Sections B & F of the EHCP (i.e. the description of needs and provision). You cannot appeal an EHCP on Health and Social Care alone there must be an educational element. Following Tribunal a copy of recommendations related to health or social care is sent to the responsible commissioning body who must respond in writing within five weeks, setting out the steps that will be taken and any reasons why any recommendations will not be followed. The LA must send a copy of the response to the Secretary of State within a week of receipt. There is a clear expectation that recommendations will be followed and if not, then parents and young people can complain to the Ombudsman or seek judicial review. As a consequence of the changes there is every prospect that Tribunal will take more than a day to be heard involving more complexity, additional or extended expert evidence and/ or witnesses. Extra costs are likely. Local Authorities have been allocated an extra budget of ÂŁ4,000 per appeal where health & care is an issue. Parents receive nothing.

GREAT EXPECTATIONS

A full review of the pilot will take place after two years. Initial results show more joint working and resolutions between commissioning

groups without the need for Tribunal hearings. For now the advice remains; if your LA has placed provision for education/training under health or social care provision you should appeal and seek to place such needs under Sections B & F making them legally enforceable. If parents do not agree with aspects of provision in the EHCP that relate to health and social care then our advice is to include this as part of an appeal on the basis that the Tribunal can investigate where they couldn’t before and importantly make recommendations for the delivery of provision. You can contact Rachael at www.boyesturner.com


kidz to adultz 88x135.qxp_Layout 1 24/09/2018 13:07 Page 1

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.

Queen Alexandra College A National College for People with Disabilities

l It’s being independent l It’s making friends l It’s rising to the challenge l It’s learning and achieving l It’s having fun l It’s QAC

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..

Make Our College Your College

• Cerebral Palsy

Court Oak Road Harborne Birmingham B17 9TG Tel: 0121 428 5050 E-mail: info@qac.ac.uk

• SWAN

Programmes for learners aged 16 - 25 include:

• Autism

l Entry Level: Preparation for Life and Work

• Global Developmental Delay

• Hypermobility

• Brain injury • Plagiocephaly

l Wide range of vocational qualifications l Personal development, social skills & independent living

What can you fundraise for?

l Assistive technology, rehabilitation and travel training, speech and language therapy

• Therapy

www.qac.ac.uk

• Equipment • Operations and treatment inside and outside of the UK • House adaptations • Sensory Gardens

QAC: Registered Charity No. 1065794 Registered in England No. 3387540 QAC Enterprises Ltd: Registered in England No. 1986389

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info@treeofhope.org.uk

Head to..

www.treeofhope.org.uk Registered Charity in England and Wales No. 1149254 / Scotland SCO42611

www.affinitydesign.eu Wheelchair accessible holiday villa in Spain Affinity Design established in 2008, is developing accessible holiday villas for disabled people, in particular those with high dependency needs. We are pleased to introduce the first of what we hope will be an extensive portfolio of similar properties. This project has been designed and developed by a disabled person conscious of the need for quality holiday accommodation with a high level of equipment provision, including electrical ceiling and mobile hoists and a private swimming pool also with a hoist. Equally important, the area surrounding the location of this villa is beautifully flat which any wheelchair user will more than welcome!!!

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UNDERSTANDING COMMON

bowel problems

IN CHILDREN WITH ADDITIONAL NEEDS BY DAVINA RICHARDSON, CHILDREN'S SPECIALIST NURSE, BLADDER AND BOWEL UK, PART OF DISABLED LIVING

B

owel problems are common in childhood, with up to 30% of all children and young people suffering the most common issue, which is constipation. In about one third the constipation will continue for more than one month and is therefore considered chronic. Treatment may then take many weeks or months. Other common problems include soiling (the term used to describe pooing in pants), children insisting on a nappy to poo into and smearing of poo (wiping poo onto clothes, walls, furniture etc). Children and young people with physical and/or learning disabilities may be more prone to constipation than their typically developing peers. The reasons for this are often not clear, leaving professionals and families unsure about how to tackle the issues. Furthermore, problems may be assumed to be part of

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the additional need, or not noticed in children who have not been toilet trained. If this is the case, then they may not be addressed. It is normal for newborn babies to poo several times a day. When solid foods are introduced the poos gradually change to more closely resemble those passed by adults. The frequency of poos slowly

reduces until at about age three children should be passing a soft, squidgy poo between once every three days and three times a day. The poos should come out easily, with no pain or distress. Children who are having less than three poos a week, who pass very large poos, or very small poos, children who try to hold onto poos, or appear to be straining and those where the poos appear to hurt may be constipated. Other signs of constipation include offensive smelling poos and wind, abdominal pain (tummy aches) and poor appetite. The last two usually improve after the child has passed a large poo. Children may also appear to lack energy, be unhappy, cross or moody.


If children become very constipated, they may start to soil. Soiling is the name used to describe poo leaking out of the bottom. If there is a large amount of poo in the rectum (the part of the bowel nearest the bottom) it can try to come out, mark the pants and then be squeezed back in by the child who is frightened to poo. If a large hard poo has caused pain, the child will not want to poo again and will therefore, try to hold on for as long as they can. The longer they hold on, the drier, harder and larger the poo gets and, therefore, the more it hurts when it does come out, so the child holds on more. This is a normal childhood response to a painful poo. The poo can then start to leak out, as bits break off the large hard lump, or liquid poos from higher up the bowel leak around the hard poo. The child is usually unaware of the soiling and cannot stop it from happening. Constipation may begin when a child starts to have solid foods for the first time (weaning), or may happen after a child has been unwell. It may be caused by restricted diets, particularly where children are reluctant to eat fruit and vegetables. It may be associated with children not drinking enough water-based drinks. However, often it is not possible to work out what has caused the problem. Ensuring that your child has plenty of water based drinks and a varied diet with plenty of fruit and vegetables can help to prevent constipation. This is not always possible for a variety of reasons and if your child is under the care of a dietician then discuss any concerns you may have with them before you try to adjust your child’s diet. If you think your child may be constipated then discuss this with their healthcare professional as soon as you can, as early treatment may help to prevent the constipation becoming chronic. Constipation should not be ignored, but should always be treated. Treatment for constipation involves giving a laxative medicine. Diet alone will not resolve constipation in children, when it has become chronic. The medicine usually tried first is

from a group called ‘Macrogols’. There are several different Macrogols, including Movicol, Laxido and Cosmocol. These are sachets of powder that are mixed with water. The water is the active ingredient. The powder binds to the water and keeps the water in the bowel, so that it can break up hard lumps of poo, soften it and make it easier for the child to pass. It is therefore very important that the Macrogol is mixed with the correct amount of water (at least 62mls per sachet for the children’s ones) and stirred until it has gone clear, before it is given. There are other medicines that may also be prescribed to treat constipation in children. Your child’s healthcare professional should discuss the best treatment for them with you. It is worth knowing that

Children and young people with physical and/or learning disabilities may be more prone to constipation than their typically developing peers

soiling may start or get worse in the first few days after starting laxatives. If your child is soiling before they begin treatment, they may be given increasing doses for a few days to clear them out. If you have any concerns about how the medicine is working or if you are struggling to get your child to take it, let their healthcare professional know. If children have been constipated for a while, they may need to take the laxatives for three to six months after they have started to have a normal poo most days, before the dose is gradually reduced. Laxatives should not normally be stopped suddenly. This is to make sure that your child’s bowel has time to recover

and makes relapse (getting worse again) less likely. Your healthcare professional should explain what dose to give your child and when and how to change the dose. There is also a video about how to give laxatives available online at www. thepoonurses.uk Constipation can be the cause of difficulty with toilet training, refusing to poo on the toilet, day or night time wetting in children who have toilet trained, and urinary tract infections (UTI or wee infections). If children are struggling with any of these, a healthcare professional may suggest a continence assessment is done to exclude constipation. Children may refuse to poo on the toilet for other reasons as well. Some children do not like the sensation of poo falling away from them; if they have sensory issues they may not like the splash or feeling of water touching their bottom if they use the toilet rather than a potty. Others may simply struggle with a change of routine from nappy to potty, or potty to toilet. Dealing with this may be difficult, but a gradual approach often works best, as refusing access to the nappy may cause the child to hold on, resulting in constipation. Try letting your child know that they can have the nappy when they want to poo. You may need to use picture cue cards or social stories to help them understand. When you think they need a poo, or they indicate they need one, take them to the bathroom and put the nappy on there. When they have done the poo, take them back to the bathroom and change the nappy with your child standing up, if they are able to. This way they can be more involved in opening the nappy and checking to see if a poo is there. Tip any poos down the toilet and explain to your child that is where the poo wants to be. Help them to change and then, after washing hands, let them go back to what they were doing before they needed the poo. Make sure that you encourage them to do as much of the changing as they are able to do. If your child has had the nappy on for about ten minutes and not done a poo, then take them back to

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the bathroom to take the nappy off. Explain that they can ask for it again when they next need a poo. Once your child is used to the new routine, you can use distraction to gradually increase the amount of time they spend in the bathroom with the nappy on, until they are in the bathroom the whole time the nappy is on. Once they have achieved that, start to sit them on the potty or toilet with the nappy on. They may only manage a few seconds to start with. Gradually increase the sitting time until they are able to sit the whole time the nappy is on. It is important that if they are on the toilet they are sitting with their bottom well supported, their knees higher than their hips and their feet flat on a firm surface. If they are not sitting well, then it is more difficult to completely empty the rectum. Some children with additional needs may require an occupational assessment to ensure they are sitting correctly. When your child is able to sit on the potty or toilet the whole time their nappy is on, leave one or both of the tabs undone, so the nappy is just wrapped round their bottom. It might be easier to do this if you buy a smaller size of nappy that will not do up. After a few days, you should be able to lay the nappy on the potty or toilet seat and sit your child on top of it. The next step is to gradually move

the nappy to under the toilet seat and then down the pan. After a time, you may be able to stop using the nappy or be able to use some folded toilet paper instead. Another common poo problem is smearing. This is when children wipe poo onto surfaces, walls or clothes. This may happen because your child is not sure whether they have pooed, so they put their hands near their bottom to check and then wipe the poo off on any available surface. A toileting programme with timed toilet visits may help with this. Ensuring they are not constipated, changing them promptly, using your hand over theirs to teach them to wipe and using picture cue cards and social stories to make sure they know what is expected may help. Children with sensory needs may smear because they don’t like the feeling of toilet paper, or because they like the sensation that they get from the texture, smell or motion that is associated with smearing. If the problem is toilet paper, then wet wipes might be an alternative. If the child is seeking sensory input then giving them sensory activities at the time of day that the smearing takes place, or at least once a day may help – consider using a structured timetable to let your child know when they will be able to have their sensory playtime. Activities that

the child may enjoy include finger painting, playing with play dough, raw pastry, custard, shaving foam or a mix of cornflour and water. If your child does smear, try not to show any reaction or give them any attention. Move them away from the area and tidy up. If the soiling continues, you could use clothing to restrict access to their bottom. A swimming costume or leotard might help, but makes toileting more difficult. There are vests with extensions that popper in the groin and body suits that make it more difficult for the child to reach their bottoms. If the smearing is happening in the evening a sleep suit that has a zip at the back may be the solution. Bowel (poo) problems in children are an issue for many families. Your child’s healthcare professional should be able to help. There is also support and information available from the national charity Bladder and Bowel UK. Leaflets are free to download and print from https:// www.bbuk.org.uk/children-youngpeople/children-resources/ There is also a free confidential helpline at email: bbuk@disabledliving.co.uk or phone 0161 607 8219

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for people with an intellectual disability, physical disability, as well as for autistic people and individuals with mental health conditions. Guidance on functional assessment, task analysis, collaborating with employers and training for new and student job coaches is also included. Job Coaches for Adults with Disabilities: A Practical Guide. Edited by Karola Dillenburger, Ewa

Matuska, Marea de Bruijn, and Hanns Rüdiger Röttgers. £17.99 from www.jkp.com


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SUPPORT WHEN YOU NEED IT MOST

Ettie’s story

IRWIN MITCHELL IS A FULL SERVICE LAW FIRM ADVISING CLIENTS, THEIR FAMILIES AND CARERS THROUGHOUT THEIR JOURNEYS

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ith years of experience working with families who’ve suffered anything from pregnancy and childbirth problems resulting in life-changing circumstances for their child, all the way to families whose children have a learning disability or life limiting condition. This is Ettie’s journey and the ways we have supported her and her loved ones over the years. Ettie has Cerebral Palsy following injuries caused by medical negligence at birth. She is unable to move independently or talk after she was starved of oxygen at birth. Whilst in labour, baby Ettie became distressed but the midwives on duty failed to properly monitor her heart rate for more than seven hours. When Ettie was finally born the umbilical cord was wrapped tightly around her neck, she was blue and was barely breathing. After working on her for several minutes, midwives made the decision to transfer baby Ettie from the local GP Assisted maternity unit where she was born, to the local hospital. There she was treated in the Special Care Baby Unit for one month before finally being discharged home. However, it was not until five months later that health workers finally admitted Ettie had cerebral palsy. Out of Court settlement was achieved with the NHS Trust on the basis of a large lump sum being paid in addition to a substantial “periodical payment” which is an

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annual payment to be made for life to cover specific costs of care and case management. This compensation enabled Ettie to purchase and adapt a house which meets her needs, allowing for both a care regime and family time, and guaranteeing her an active and independent lifestyle for life with access to all therapies and equipment she needs now and in the future. She is now 14 years old and is enjoying her time at a coeducational special school in Bath which she joined in September 2017. Ettie likes to play sports with her peers and participates in several activities on offer at school and in her free time, including Boccia (she is the class champion at this sport!), power chair football, swimming and hydrotherapy. Ettie is a very sociable teenager who loves to be busy and in the company of others. Ettie has had a Court appointed Deputy at Irwin Mitchell since she was five years old. The Court of protection team supports Ettie and her family in the management of a team of 7 support workers who enable Ettie to engage in social activities she takes part in and see her friends. The team at Irwin Mitchell manages Ettie’s finances and use funds to pay for her support team, to maintain her wheelchair accessible vehicles and assistive equipment needed to enable her to participate in sports and social activities. The team also purchased Ettie’s house on her behalf and arranged significant adaptation

works to meet her needs. The team are also responsible for the investment of her compensation award. Other teams at Irwin Mitchell have also supported Ettie and her family over the years. The employment department of the firm has advised Ettie’s Deputy and parents on the responsibilities involved in acting as an employer for a large team of support workers. It has provided employment contracts and practical advice on how to manage requests for pay rises and changes to employment arrangements when the need has arisen. The Public Law and Human Rights team has also advised Ettie’s parents in relation to education and school placements at the important transition stages of Ettie’s school life. The team has supported Ettie’s Deputy and parents in the process of accessing appropriate funding for school placements, additional support and provisions for therapies. Various teams at Irwin Mitchell have supported Ettie and her parents over the years since her injury. It is wonderful for us to see how she progresses each year and has become a sociable and sporty teenager through the support of her dedicated parents and team of professionals. For more information about Irwin Mitchell visit www.irwinmitchell.com


Our Family Support Hub is there for families caring for a seriously ill child.

Call our friendly team on 0808 8088 100 to: • • • •

Find services that can support you Talk through challenges you’re facing Join our Family Facebook Group Get involved in our wider work or share your story

Together for Short Lives is the UK’s leading charity for the 49,000 children living with life-limiting conditions, and their families. Visit our website to find out more www.togetherforshortlives.org.uk/getsupport or email us at info@togetherforshortlives.org.uk With thanks to both Her Majesty’s Government, the Department for Digital, Culture Media and Sport and National Lottery players.

Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and a company limited by guarantee (7783702)

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 calibreaudio 31


HARASSMENT AND DISABILITIES

RESEARCH HIGHLIGHTS

differences RESEARCH FROM THE UNIVERSITY OF NEW HAMPSHIRE IN THE USA HAS FOUND THAT CHILDREN WITH DISABILITIES FACE DIFFERENT TYPES OF PEER HARASSMENT DEPENDING ON WHETHER THEY HAVE INTELLECTUAL OR PHYSICAL DISABILITIES

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esearchers surveyed 791 children between the ages of 10 and 20, with 30% of them reporting experiencing some form of harassment. Those with learning disabilities were more likely to be harassed in person, while children with physical disabilities were more likely to experience online harassment. Those with depression were more likely to report harassment taking place both online and in person. Why the differences? “We don’t know for sure,” said Melissa Wells, the report’s primary author. “Kids with disabilities are not just one group of kids.” Kimberly Mitchell, a co-author on the report, said children

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who experienced mixed forms of harassment felt much more distress than those solely harassed online. “When an incident takes place online, it’s usually a onetime interaction with someone the child does not know”, she said. “Harassment taking place both online and in person is often a longer-term issue involving someone the victim knows well.” The research highlights the role that rapidly changing technology plays in the lives of young people. “One of the most interesting things to come out of this research is an increased understanding of just how integrated technology is in the lives of youths,” the researchers said. “We need to focus on helping

youths learn how to take care of each other and feeling safe talking to trusted adults.” Melissa hopes the study will open the door for educators and social workers to take technology into consideration when assessing incidents occurring on school grounds. Solutions could include school-based programmes, such as peer-to-peer initiatives or leadership development efforts for students.

Photo by Timothy Eberly on Unsplash


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

TRANSFER WITH EASE TO A COMFORTABLE SEATING POSITION SELECT toilet lifter is height adjustable and perfectly adapts to other Pressalit products, such as PLUS support arms. Pressalit Care Ltd., 100 Longwater Avenue Green Park, Reading T: + 44 (0)118 923 2696, F: + 44 (0)118 986 8867 www.pressalitcare.com

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LONDON LORD MAYOR RESPONSIBLE FOR

over 100 years OF RESIDENTIAL EDUCATION

“I LOVE BEING A RESIDENTIAL STUDENT.” SAYS ANNA A YEAR 9 STUDENT AT TRELOAR SCHOOL

“T

he things that really stand out for me are the opportunities it opens up and the independence it gives you. Before I was a residential student here I would sit in my bedroom all evening and read my book or play games on my own. Now, it is rare that I am in my room. I am with lots of friends and am taking part in social activities, whether it is playing on the

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consoles or playing games, or just chatting.” Treloar’s is in Alton in Hampshire and has been providing residential education to young, physicallydisabled people for over 100 years. Its founder was Sir William Treloar, the Lord Mayor of the City of London, in 1908 and it still maintains strong links with the City. On the campus there are a School and College which

meet the needs of young people with a wide range of aims of placement. The very bespoke programmes are designed to develop the skills and confidence of each young person so that they can be as independent as possible whether they are progressing to university or moving to live in a supported environment. Approximately 120 of the 170 students who attend Treloar’s are


residential, but many of the others have regular respite stays at the School or College. Uniquely it is rated “Outstanding” by the CQC and OFSTED for its residential provision and education is rated “Outstanding” by OFSTED in both the School and College. Principal Martin Ingram is understandably a supporter of residential placements when they can better meet the needs of individual students: “Clearly for some students there are obvious practical reasons to be residential; they live too far away from us to make a daily commute viable. For many, to really achieve their potential and to prepare them fully to be as independent as possible, our support, facilities and curriculum beyond the regular school or college day are essential.” Zac, a College student in his final year at Treloar’s, stresses the support he is given in preparing to move to a new setting: “Staff are really good at teaching me the skills I need to live away from home. I know how I might choose a PA in future and I have made links with people and organisations that will be important to me when I leave. I love it here but I am more confident about facing the future.” Treloar’s has a partnership with Alton College, an Outstanding Sixth Form College in the town, which gives

I have gained in confidence and am so much more positive about what I can do. I am with people who understand me and know how to support me

students, for whom it is appropriate, the opportunity to study a wide range of A-level and BTEC qualifications. Their complex medical needs are met and they receive intensive independence training and therapy to prepare them for university or employment. For some who have struggled to succeed in a mainstream setting, this is transformational. Florence was clear: “I am going to Uni next year, and this would not have been possible if I had stayed where I was. Here I have gained in confidence and am so much more positive about what I can do. I am with people who understand me and know how to support me.” The best residential placements are not about removing young people from their communities and isolating them; they focus on maximising the opportunities for a young person to achieve their potential and the student’s families are a really important part in making decisions. Not only can students at Treloar’s receive the care and therapeutic inputs necessary to access education, they can acquire the independence skills to help them to transition successfully to the next stage of their lives. For more information, visit www.treloar.org.uk

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Georgia’s powerchair has enabled her to make the most of her university experience

Pioneering

POWERCHAIR GEORGIA HEAD, 19 FROM HAMPSHIRE, HAS BEEN ABLE TO ACHIEVE HER AMBITION TO STUDY SPECIAL EDUCATIONAL NEEDS AT UNIVERSITY THROUGH THE INDEPENDENCE DELIVERED BY THE CUTTING-EDGE WHILL MODEL C POWERCHAIR

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eorgia, who has Cerebral Palsy, is at Canterbury Christ Church University in Kent. The powerchair incorporates 24 individual rollers, each of the two front omni wheels provide forward and lateral rotation so the smallest feasible turning circle is possible, without the need for a traditional castor. Its ‘computer mouse style’ joystick is specifically designed to be intuitive so power and braking is ultra-responsive even in challenging situations. Of the WHILL, Georgia says: “My WHILL helps me get around my

36

lectures quickly and easily, and makes the campus more accessible in general. It means I don’t have to ask for help from my peers as much. Due to my disability, I get fatigued very easily so the WHILL means I can conserve energy for studying and socialising, rather than for pushing my wheelchair which can be difficult.” She adds: “I am able to transfer out of my WHILL quickly onto lecture hall seats where the desks are attached to the chairs. I can then park my WHILL using the Bluetooth remote control app. The other students have

been amazed by its ‘space age’ looks and technology.” Georgia is hoping to pursue a career working with individuals who have special educational needs, disabilities and conditions. “With the help of my WHILL, I will be clearly able to show people that regardless of your abilities, with the right equipment you can do anything you put your mind to.” The WHILL powerchair is available from TGA Mobility. Visit www.tgamobility.co.uk


ES U S IS E R U T U F E H T S IS M DON’T E IN Z A G A M Z T L U D A O T Z ID OF K 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.

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Paralympic target for young

English champion

WITH TWO CHAMPION OF ENGLAND TITLES UNDER HIS BELT BOCCIA ENGLAND PLAYER, RESHAD SARAJ IS DETERMINED TO PURSUE HIS DREAM OF REPRESENTING HIS COUNTRY AT A FUTURE PARALYMPICS 38


A

t the age of 16, Reshad, who has Cerebral Palsy and is confined to a wheelchair, was given a scrap of paper by one of the school assistants with details of a forthcoming Boccia trial and Reshad and his Mum set off for Bath to try his luck with a new sport. The weekend wasn’t a great success and Reshad was advised to try another sport but, having been given the taste, undaunted and determined to progress in a sport in which he felt he could excel, he researched and found a local charity; PACE (pacezone.org.uk), which promotes the inclusion and active participation of young disabled people in sports and which already had an established Boccia structure. Joining the club, Reshad spent the next few years honing his skills through sheer hard work and training progressing through club, local, regional and national competitions, spending many weekends travelling around the country with his long-suffering Mum supporting him, until he came to the notice of the Boccia England team (bocciaengland.org.uk) and was selected to represent England in 2014. At his very first international match in Poland, Reshad overcame athletes from 16 countries winning the individual Gold Medal. Since then he has played for his country in both team and individual competitions winning Chris Ratcliffe, Boccia England Chief more medals and, despite a setback in 2015 where Executive, presents the Boccia he suffered a serious injury, he fought back to become England Championship 2018 cup and gold medal to Reshad England Champion in 2016 for the first time as well as picking up the Boccia England Player of the Year Award. diverse range of exhibitors was a real eye opener, we met Last year he became a SportsAid Ambassador some old friends and made contact with some exhibitors (sportsaid.org.uk), an initiative supported by the Mayor new to us, some of which have already provided of London and has been selected to play in the Boccia GB opportunities which we wouldn’t have been aware of if we Challenge Cup, an invitation only competition to allow hadn’t been at the exhibition, for me a must-go event.” Boccia GB athletes to compete against the best of the At Boccia England level there is no external financial Home Nations players. Reshad hopes this could be a support for the athletes and all springboard to selection for Boccia costs are met by the individual GB and the chance to represent his athletes. Twice weekly training at country at a future Paralympics. He Reshad’s local gym and attending has also been appointed a Volunteer monthly England Training Camps, Team Leader at PACE where he It’s been a challenging monthly regional academy training is giving back to the charity in sessions, domestic and international appreciation of the support they have but incredibly competitions including transport and given him over the years. rewarding 10 years accommodation as well as equipment Reshad said: “It’s been a challenging costs is an expensive business but incredibly rewarding 10 years, costing up to £8,000 per year all of many ups and downs, but I’ve been which is met by Reshad and his family determined to succeed and have been at great personal sacrifice. lucky enough to have been supported Reshad has a stand at the Kidz to Adultz South Exhibition by my family, especially my Mum as well as my Coaches in May and will be showcasing some of his awards and and a number of other organisations including TASS – medals and the equipment he uses for his sport. At the Talented Athlete Scholarship Scheme (tass.gov.uk) and, exhibition he is seeking sponsorship to help with the costs more recently; The Mayor of London’s SportsAid where of his sports and sponsorship packages will be on display. I have attended a number of seminar days to help with Reshad also has a JustGiving Page (justgiving.com/ some of the other pressures an athlete must cope with crowdfunding/reshad-saraj) and would be grateful for any such as how to deal with the media and having a balanced individual or corporate donations that anyone would like nutritional diet.” to make to support this determined young man on his He continued: “Last year we also visited the Kidz to journey to represent his country. Adultz South Exhibition and had a great day out. The

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SPECIALIST RECYCLING

service change NEWLIFE THE CHARITY FOR DISABLED CHILDREN HAS ANNOUNCED THAT MURRAYS MEDICAL WILL TAKE OVER THE RUNNING OF ITS SUCCESSFUL SPECIALIST EQUIPMENT RECYCLING SERVICE, NEWLIFEABLE

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ewlife launched the unique recycling service in 2014/15 following reports that large quantities of perfectly good disability equipment were being sent to landfill or left to gather dust in healthcare stores across the UK. With families struggling to get hold of specialist equipment through their local health or social care services, and with a price tag of hundreds, often thousands of pounds, many had no alternative but to buy secondhand from online auction sites. Newlife CEO, Sheila Brown, OBE, said: “Authorities sending fully functional disability equipment to landfill is not only extremely bad for the planet, but devastating for the families denied equipment from statutory services and simply unable to afford to buy brand new direct from suppliers. The danger of buying second-hand equipment through an auction site, or car boot sale, is there’s no guarantee that it works, as well as the obvious concern about cleanliness and, most importantly, is it suited to the child’s needs.” Murrays, who have over 30 years’ experience in the Healthcare industry, has been working with Newlife to manage the equipment recycling service over the last three

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years; clinically cleaning and refurbishing the items to meet stringent MRSA standards (as used in the NHS), with Newlife selling to families in need at a reduced, affordable cost. Sheila Brown added: “Having proved the service works, we’re delighted to announce that Murrays will take over the full service supplementing its current offerings.” Any families or healthcare professionals that have paediatric specialist equipment that is no longer required can get in touch via

the website, www.newlifeable.co.uk to arrange collection of the items. The team will then refurbish the pieces that can be resold, or break down those that can’t for parts so the raw materials, such as metal or wood, can be recycled. Newlife will receive a donation of 10% from every sale of the refurbished equipment that will support the core work of the charity. To arrange an equipment collection, call 01527 871924.


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DIRECT PAYMENT FLEXIBILITY KEY FOR CUSTOMER SUPPORT

EAST MIDLANDS BASED DD PAYROLL SERVICES SUPPORT DIRECT PAYMENT RECIPIENTS NATIONWIDE WITH THEIR PAYROLL AND MANAGED ACCOUNT SERVICES. WHEN JO CAIRNS FROM DERBYSHIRE RELOCATED TO SHROPSHIRE SHE WAS RELIEVED THAT THEY COULD MOVE WITH HER

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hrewsbury based mum Jo Cairns receives a Direct Payment from her Local Authority and employs two personal assistants to care for her son, Daniel, who has autism. Having lived in Derby for several years Jo made the move to Shrewsbury at the end of 2017 but was concerned that her payroll provider, DD Payroll wouldn’t be able to continue to support her. “With so much to organise in terms of ensuring a smooth transition for Dan the last thing I needed to worry about was changing my payroll provider too, I just didn’t want any more change” explains Jo. “I had built up a great relationship with DD Payroll over the years and would pop into the office most months to report the hours worked by our care staff in order for them to run my payroll. They are all so friendly, as soon as I walked through the door, they’d come over to greet me with a smile. A smile is everything!” Jo uses DD Payroll’s standard service, which provides a 4 weekly pay run. This service calculates how much tax and national insurance is due for each pay period and auto

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enrolment/pensions administration can also be included. Payslips are provided via email or post and all necessary information is reported to HMRC. For new customers the service includes registration with HMRC and payroll set up with no initial set up costs. Now that Jo and Daniel have relocated, along with Jo’s husband Rob – who enjoys a successful career as a 70’s tribute act, Jo chooses to report her staff working hours by text. “I really thought DD Payroll would have to say goodbye to us…….they didn’t! The fact that they cover the whole of the UK and I can contact them however I want has given me the flexibility I need. I get a reminder text if my staff hours are due, which is really useful, and the payroll is always completed promptly.” Jo is an advocate of Direct Payments as it enables more choice and control over Daniel’s care: “There is still not a huge awareness of direct payments and how they work, I would say receiving one makes things easier for disabled people and their families. I’m always telling people about it and how it

works for us. If you can’t manage the payment yourself like I do, you can have a higher level of support with a managed account.” The managed account option with DD Payroll can be added to the standard payroll service or as a stand-alone option. DD Payroll receive the Direct Payment and make all payments on your behalf either paying staff or care agency invoices, as well as providing reports for your local authority. A full support service for any enquiries is offered by the DD team. “I like the fact that if I call with any questions I don’t feel fobbed off. Everybody will help me, the staff are very reliable and informative,” explains Jo, “you don’t have to do everything yourself, there are some good Direct Payment support services out there.” DD Payroll services is a social enterprise with all profits going to Disability Direct, a charity that facilitates independent living opportunities for disabled people. DD Payroll Services can be contacted on 01332 293612 www.ddpayroll.co.uk


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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 may 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

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EO D VI E! T IV O L C W AS O N

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The considered choice in specialist adjustable beds for younger people Delivering quality, value and peace of mind

Mascot Mk2:

• Market-leading paediatric specialists since 1981

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

• Largest range of adjustable cots and beds with powered variable height, tilt and mattress profiling • Caring Trusted Assessors ready to assess and meet your child’s individual needs • Safe and robust designs, for looks and longevity

Bespoke, precision padding

• Outstanding long term value • 14-day Suitability Guarantee • Fully inclusive 3-year warranties on standard and tailor-made solutions • Providing safe working heights for carers • Recommended by leading OTs

Hannah Olaf

Freephone: 0800 834654

Timmy

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

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