Kidz to Adultz Magazine November 2018

kidz

to

ADULTZ

MAGAZINE

ISSUE 1 / NOVEMBER 2018

IN THIS ISSUE...

ARCHIE’S NEW FOUND FREEDOM BOOK LAUNCH SUCCESS

Win!

UNIVERSITY DREAM REALISED WORLD CUP ADVENTURE MARGAUX GETS A STEP UP FROM REMAP

this

fantastic

SLEDGE!

Welcome!

CONTENTS...

Step up from Remap............. 6 Making arts accessible........ 8

WELCOME TO THE FIRST ISSUE OF KIDZ TO ADULTZ MAGAZINE

Innovative book launch......10

t was just a chance remark that sparked the idea – Had we ever thought of developing a brand new magazine for the parents and professionals who visit in such large numbers to our series of Kidz to Adultz exhibitions?

We hadn’t, but we thought it was a great idea. It turned out that it wasn’t only us either, as talking to the companies and organisations that support the shows with exhibition stands, they also believed that it would be well received.

And so, here it is, our first issue, packed with ideas, advice and brilliant stories showing just what can be achieved.

We’ve been inundated with contributions, so much so that we haven’t been able to fit everything into the first issue, but the good news is that we are already working on the second issue and so we would love to hear from anyone who has a story to tell that may inspire or help others.

We are hugely thankful for everyone’s support with the The Kidz to Adultz shows which are now such well-established events. We hope that you will enjoy the new magazine and find it as useful so that we can develop it into something just as popular as our shows.

Crowdfunding support......16

I

Carmel Hourigan Editor & Manager Kidz to Adultz Exhibitions

Win a sledge........................12

World Cup adventure.........20 College team success........22 Listening to customers......28 Tilly’s USA dream................32 Focus on finances...............38 Internship success.............40 Therapeutic positioning....42 University challenges........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

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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, 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 5 events nationally, in Farnborough, Bristol, Coventry, Manchester and Edinburgh. 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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As round as a spinning top and as colourful as a marble run – let‘s discover the world through play!

schuchmann.co.uk

madita-fun. I am your integrative therapy chair.

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Margaux

GETS A STEP UP

FROM REMAP WHEN LITTLE MARGAUX WAS STRUGGLING TO USE THE WASHBASIN IN THE FAMILY’S BATHROOM, HER OT AT DERBY CHILDREN’S HOSPITAL PUT THE FAMILY IN TOUCH WITH REMAP

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emap is a national charity with an army of ingenious volunteer inventors who love making things. They produce equipment and gadgets which are provided free of charge, filling the gap where no suitable equipment is available commercially.

A local volunteer visited the family and went on to produce a custommade step unit which allows Margaux to reach the bathroom washbasin and taps. The upper step provides a safe standing platform and the step surfaces have a non-slip surface.

After use, the step treads can be folded up vertically, close to the sink unit, to allow others access to the washbasin. Wooden pegs lock the

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steps in place, so they can’t move while Margaux is using them and because the platform and steps can be folded away the unit does not

Remap is a national charity with an army of ingenious volunteer inventors who love making things.

Margaux is just one of thousands of people who have been helped by Remap

have to be moved when other people need to use the basin.

For more 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 at www.remap.org.uk Remap covers the whole of the UK, helping over 3,500 people every year to become more independent. The organisation celebrated its 50 year anniversary in 2014 and has helped over 100,000 people.

You can see a film of Margaux at https://www.youtube.com/ watch?v=w62dUKzyw94

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MAKING THE ARTS MORE

accessible

CORRIE STAR PART OF TEAM FOR CREATIVE AND CONFIDENCE INITIATIVE

C

herylee Houston, who plays the role of Izzy Armstrong in Coronation Street is part of a team that has launched TripleC (Creative, Confidence, Collective), an initiative that aims to make the arts more accessible TripleC was set up a couple of years ago in Manchester as Cherylee explained: “We are made up of a group of disabled and nondisabled artists who aim to change accessibility within the arts.”

She says that TripleC has come about through a passion for change. “As a group of people with disabilities we’ve found the inclusivity of the arts a very slow process of change and want to speed it up by sharing our knowledge of how to make work accessible and finding solutions to access issues.”

There are five co-founders of the organisation. Cherylee works alongside Melissa Johns, an actress best known for playing Imogen Pascoe in Coronation Street, Ged Mulherin, an actor and drama workshop leader, and Lydia Mulherin who has helped create and develop projects for Seashell Trust, The Lancasterian and Z-Arts. Also part

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Cherylee and the TripleC team are aiming to make the arts more accessible

of the team are Monique Jarret who is a trainee workshop leader and who has been working with Arts companies on projects for over 15 years and Jenny Stott, an access advisor.

Cherylee gave an example of the work that the group is undertaking:

We work in an improvisational way with a strong team emphasis

“We have worked with The Sea Shell Trust providing drama games for the college students. There were incredible outcomes such as confidence boosts, gaining general skills and developing creative skills.

Funding has been provided by PZ Cussons to run a programme during October until the summer term. We are currently working with Disabled

Artists Networking Community to create a change of how disabilities are represented in the media.”

At the Kidz to Adultz North exhibition TripleC are scheduled to run a series of fun, practical workshops using the creative arts, dance and drama to encourage the use of the imagination and self-advocacy. “We work in an improvisational way with a strong team emphasis” Cherylee told us.

“Our workshops will be fun, exciting and enjoyable for all and it helps young people develop their social skills and stimulate their brains.

They have been created to help young people to learn about selfexpression.”

TripleC can also provide Bespoke Access Awareness Training for individual organisations. Accessible Workshops in creative arts practices were instrumental in setting up the Manchester Mental Health Choir Bee Vocal during term-time in partnership with Choir Master Dan McDwyer.

You can find out more about TripleC and the work the organisation does at www.tripleczone.org or find the team on Facebook or Twitter

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

Think Wheelchairs Think SMART

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

Switch Adapted Toys MERU offers a wide range of toys adapted to work with standard access switches.

Charity no: 269804

Visit our website for toys, switches and more great Xmas gift ideas!

www. meru.org.uk

01372 725203 9

Genetic diagnosis research leads to

INNOVATIVE

book launch

OUR UNDERSTANDING OF THE GENETIC CAUSES OF MANY RARE DISORDERS IS STILL QUITE NEW

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his is why a group of researchers at University of Cambridge, Cardiff University, and University College London set up the IMAGINE ID study, funded by the Medical Research Council collecting information about children with a genetic diagnosis related to learning problems. The study hopes to recruit 3,000 families; the more families who are enrolled, the more useful the information will be, especially for families with very rare conditions.

Parents complete a questionnaire about their child and soon after receive a personalised summary report. Hayley Monk, mother to Ethan, said of completing this questionnaire: “It gave us a chance to describe the positive aspects of Ethan’s personality, as well as facing up to his limitations and difficulties. It was the first report that we had on our son that was a true description of him.”

Hayley found the report particularly useful when going through the difficult process of updating Ethan’s EHC plan with the objective to move him from mainstream schooling to specialist provision. She said the

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results also made her appreciate the stress that Ethan had been under, simply trying to fit in with other children and everyday life.

We were able to give a copy of the report to his new teachers and this has helped them to see the bigger picture that is our child and understand what his relatively rare syndrome actually means for him.

“We were able to give a copy of the report to his new teachers and this has helped them to see the

bigger picture that is our child and understand what his relatively rare syndrome actually means for him.

I hope other parents and carers reading this will be encouraged to register for the study.”

To acknowledge the children’s contribution to the project, a book was commissioned about rare disease and participating in research, titled Avery. According to IMAGINE ID, the response to Avery has been overwhelmingly positive. Every family is sent a copy when they join the study and is also available to purchase online.

So far over 2,500 participants have been recruited to the study, but more are urgently needed. To be eligible, your child must be aged four years or older and have a genetic diagnosis with intellectual disability, learning difficulty or developmental delay.

To find out more please visit http://imagine-id.org/ or contact the IMAGINE ID team: imagine.id@nhs.net or 01223 254631

Avery helps children and their siblings gain a sense of belonging and to help with feelings of isolation

Ethan is one of the children who has benefitted from taking part in the research

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FUN IN THE

snow‌

WIN A BEAUTIFUL SLEDGE WORTH ÂŁ299

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he Cerebra Sledge was developed for Sarah, who had to sit inside while the other children in the village went off playing in the snow. She needed a fully supportive seat on a sledge that would not draw negative attention and would not get stuck in the snow.

Designed to last many winters, it has a low centre of gravity and is fitted with straps for safety, armrests and a corded lead to pull it around

or back up the hill. There is a seat on the back for parents or siblings to join in and has a seat width of 14 inches (36cm).

The high quality sledge is manufactured by Gordon Ellis & Co for Cerebra and they are exported all over the world.

You could be using the super sledge this winter simply by sending your details to Gordon Ellis & Co.

For a chance of winning this great product, just email martyb@gordonellis.co.uk with your name, contact number, address and details of who you would like to win the sledge for.

Win!

Entries close on Friday December 21st at 5.00pm.

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will be at Kidz to Adultz North see us at stand B8

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personalised

VISUAL CHECKLIST

SYSTEM ADDS CONFIDENCE

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such as Christmas and birthdays. He would get very anxious and need lots of reassurance about what to expect.

She explained: “Before discovering TomTag I used to make my own picture schedules to help him. This was really time consuming and involved many hours printing off pictures, laminating them and then attaching them to Velcro. I use TomTag as an after school routine reminder. I set up a tag to remind him about his after-school clubs, for example, drama club. I attached the tag to his school bag and he soon got into the

omTag, from Orkid ideas, is a unique system for creating personalised visual checklists, timetables and schedules. It’s particularly helpful for children (aged 3 upwards), young people or adults with autism, learning difficulties and special educational needs.

Carron Beckwith uses TomTag with her son, Harry, aged 7 who has autism.

She bought TomTag as Harry was struggling to understand what was going to happen during his day especially after school and on special occasions

Get Wise to communicating with families Parents as partners – Making a difference together

When you enter a family’s house, it is also their home, their place of comfort and safe space. Whilst keeping this in mind, professionals should understand the potential anxieties and fears families may have around outsiders entering their home and the decisions that may be made. Working with parents/carers and involving them at every stage of a meeting/ assessment will help gain their respect and trust.

Partnership

Companies, professionals and parents are all the experts in their own right. Bringing together everyone’s skills, knowledge and resources creates the best outcome because when parents are partners; everyone, especially the person with the disability, wins.

Perspective

Every family has a story.

Every interaction is part of an on going journey littered with complications, emotions and challenges.

Priorities

PHOTO: NICOLA PARRY

Every person has a different set of priorities and expectations. When each party openly communicates their agenda and priorities, progress can be made.

Overleaf, we have established some top tips to help when working with families.

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For more information, visit www.orkidideas.com

ADVISORY LEAFLET FOR COMMUNICATION AIDS

BHTA GET WISE

The BHTA have worked with the Don’t Call Me Mum campaign initiative to produce this leaflet. We want to help professionals and companies working with carers and families of adults and children with additional needs, to demonstrate their respect of parents as partners in the assessment process.

habit of checking this for himself - it was also a useful reminder for his teachers.”

TomTag reminders and schedules are quick and easy to set up and are very versatile. If there’s a change in routine, then it’s easy to adjust the tag to show a new activity– simply pop on a new sticker and click the buttons in.

Carron added: “TomTag has made a real difference to our lives – it’s had a positive effect on Harry’s confidence and helps manage his anxieties around routines and I don’t now have to spend my free time printing and laminating.”

The British Healthcare Trades Association (BHTA) Independent Living section working with their alternative, augmentative comunication members (AAC), have produced a Get Wise information leaflet to help those in need of communication aids know how to access products and services.

The term AAC covers a wide range of techniques that support or replace spoken communication. Techniques include gestures, signing, symbols, communication boards and books, as well as powered and computerised devices such as voice output communications aids (VOCAs).

The BHTA has worked with Communication Matters, an organisation committed to supporting people of all ages who find communication difficult because they have little or no clear speech.

A Get Wise leaflet has been designed to answer any questions relating to accessing services, funding and suitable products.

This and other Get Wise leaflet is available to download from www.bhta.com/get-wise-leaflets

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 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 students in two-bedded 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 15

Crowdfunding

CHARITY SUPPORTING

families to raise funds

TREE OF HOPE IS A CROWDFUNDING CHARITY 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

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he charity gives access to corporate donations, GiftAid, potential grants from Trusts and Foundations and most importantly provide reassurance to donors.

Tree of Hope helps children under the age of 18, with access to funds up to their 25th birthday. Fundraising can be for therapy, equipment, operations and treatment inside and outside of the UK, house adaptations and sensory gardens.

Five-year-old Ella has Scoliosis, dystonia and an undiagnosed genetic condition. In February 2017 Ella’s family joined Tree of Hope and started their campaign to raise £12,000 for a specialist piece of equipment called an Innowalk.

The Innowalk was introduced to Ella and her family by her private physiotherapist. It allows Ella to be upright and moving, almost like a cross trainer. Many children with similar conditions to Ella have seen hugely positive effects from using the equipment and after a trial run her family knew it was what was needed to help her.

However, the Innowalk comes at a cost of £12,000 which Ella’s family couldn’t afford.

Ella’s fundraising campaign with Tree of Hope raised an initial £6000 with three of Sue’s closest friends taking on their own challenges - a mountain climb in Morocco, a boxing match in Thailand and a 10k race.

“We couldn’t believe it when we got the call from Tree of Hope about the grant” said Ella’s Mum Sue. “Although we had raised £6000 we still had another £6000 to go and we weren’t sure how we were going to do that.”

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Ella’s family have used the charity to raise funds for an important piece of equipment

For more information visit www.treeofhope.org.uk

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WHY DOES MY CHILD BEHAVE

differently at home and school?

BY ALIS ROWE, FOUNDER OF THE CURLY HAIR PROJECT

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ne of the most common things I hear from parents is that their child is well behaved at school but has terrible outbursts at home. Because the teachers don’t see these difficult behaviours, it might cause them to disbelieve the parents or not believe there are any ‘problems.’

Similarly with adults, an adult may get on very well at work and appear friendly and kind to their co-workers, yet can behave very differently and be difficult at home.

Leading autism psychologist Professor Tony Attwood refers to this as the Jekyl and Hyde character.

It has been highlighted in many sources that children on the autistic spectrum display significantly different behaviours in different settings.

For more information please visit www.thegirlwiththecurlyhair.co.uk The Curly Hair Project Ltd is a social enterprise supporting people on the autistic spectrum and the people around them.

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HERE ARE 4 REASONS WHY BEHAVIOUR MAY BE ‘GOOD’ AT SCHOOL AND 4 REASONS WHY IT MIGHT BE ‘DIFFICULT’ AT HOME: 4 REASONS WHY AN AUTISTIC CHILD’S BEHAVIOUR MIGHT BE ‘GOOD’ AT SCHOOL

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The child doesn’t want to draw any attention to themselves

2

The child is ‘frozen’ with anxiety and can’t react, even if they wanted to

3

The child is ‘masking’ (a common behaviour seen especially in autistic girls) which means they are ‘pretending’ to be coping and getting on well with their friends and schoolwork

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The child is a rule-follower – autistic children may be likely to follow rules by nature

4 REASONS WHY AN AUTISTIC CHILD’S BEHAVIOUR MIGHT BE ‘DIFFICULT’ AT HOME

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The child has pent-up stress and anxiety from the school day

2

The child feels safe at home with their parents and will have tantrums and meltdown because they trust they will be cared for and looked after properly

3

The child is completely exhausted from the school day

4

The child can be blunt and open with their parents and be their true self, because communication with family is often easier than communication with nonfamily members. Therefore they can ‘moan’, ‘complain’ and ‘nitpick’ which parents can find exasperating!

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FLYING COURSE PROVIDES

lift off for World Cup adventure

MORGAN PARRY IS 21 AND VERY INTO HIS FOOTBALL, SUPPORTING BOLTON WANDERERS BOTH HOME AND AWAY AND, OF COURSE, ENGLAND

Morgan with some of the fans he has met from around the world

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e has complex cerebral palsy and is a nonambulant wheelchair user, communicating using a communication device – the Eye Gaze.

Although it takes a lot of planning, along with his father Stephen, he has had some fantastic football adventures over the past few years, making his way to Brazil for the World Cup in 2014, France for the Euros in 2016 and more recently, Russia for the World Cup. However, planning the Russian trip was more difficult than in the past as Stephen explains: “As Morgan’s body and condition has changed over the past few years, it has become more difficult to get him comfortable on flights. When we were planning the trip to Russia, I didn’t think that he would be able to fly and so I was looking at options to get there by train and ferry. I had worked out a way to do it, but it was going to take a long time – four or five days.”

However, Stephen spotted details of a course that was designed to offer advice about flying and decided

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to book himself onto it.

He was impressed with the course, which was run by The Queen Elizabeth Foundation (QEF). “I would recommend attending one of the training events that briefs you on what to expect at the airport as it gives you a good feel for the process all the way through.”

And, while on the course, he learnt about another service that has proved to be invaluable. “When I was on the QEF course, I found out about the Tryb4uFly courses which provide individual cabin assessments, information about flying with a disability and hire equipment to help make the journey easier.”

One of the assistance teams that have helped Morgan and his father Stephen make the airport experience a little easier

Stephen attended a TryB4UFly assessment at the William Merritt Centre in Leeds and found that the written report produced was helpful as supporting medical information to the airline. The assessment also recommended the use of the Stabilo Seating System which worked very well for Morgan as Stephen explained: “The OTs identified that the Stabilo seating system would be something that would work for us and they actually lent us one for the trip and it made all the difference.”

So, after the Russian trip, what advice does Stephen have for people looking to book flights and who might need some support? He tells us that he found the Manchester, Stockholm and St Petersburg airport support teams to be very professional and very helpful.

“I learnt that, as long as you have alerted the airport team beforehand, when you arrive at the drop off point, you simply press a button for assistance and someone is with you pretty promptly and we were escorted all the way through the airport. We were fast-tracked through security and having the assistance smoothed the way very well. The whole process, right from getting out of the car was very smooth.”

“Key issues” he says, “are planning the journey from home to venue and back home in detail. You need facilities on arrival at the airport through landslide, security and airside on to the aircraft and into your seat.”

He adds: “Booking assistance with

The whole process, right from getting out of the car was very smooth

the airport and airline is essential - but talk to the support team to clarify needs. Don’t rely on emails or standard form returns. Leave extra time to ensure that any problems can be resolved.”

There are some things that he would like to see changed too.

“Morgan has a bespoke moulded wheelchair and cannot use the airport wheelchairs. Ideally people should be able to fly in their own wheelchairs as they can in a bus,

coach, rail, or a car. Regulations need to change to ensure this happens and we support the FlyingDisabled campaign for this. Also, Changing Places standard toilets need to be developed on an aircraft. It’s desirable on short haul (up to 2 hours) flights but essential on longer haul flights. And all airports should have Changing Places facilities in every terminal - air and landslide.”

Finally, he says: “One major problem is having access to wheelchair accessible transport from airports to and from your hotel or accommodation destination. It is in the interest of airlines and/ or airports to offer a service like this - similar to chauffeur driven cars for Business Class/First Class customers with some airlines. There was a major problem in obtaining suitable wheelchair accessible taxis in Russia.”

Although not an easy thing to do, Stephen and Morgan made it happen and enjoyed a fantastic trip to Russia, even though the Three Lions didn’t end up bringing home the trophy!

For more information on the QEF courses, visit https://qef.org.uk

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Bubble & Fizz creation leads to

13 AWARDS for college team

IN SEPTEMBER 2017, SIX STUDENTS FROM COLEG ELIDYR, A SPECIALIST FURTHER EDUCATION COLLEGE FOR YOUNG ADULTS WITH LEARNING DIFFICULTIES AND DISABILITIES, ENROLLED ON THE NATIONAL YOUNG ENTERPRISE PROGRAMME AND ESTABLISHED A BUSINESS THEY CALLED ‘BUBBLE & FIZZ’ 22

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espite the significant challenges they face, they have gone on to compete against non-disabled peers in a range of competitions and with extraordinary success.

Students Alison, Ben, Catryn, Douglas, Elin and Max create, make and sell a range of soaps and bath bombs.

The journey started at the University of South Wales at the launch event for the Young Enterprise Scheme. It included a ‘Dragons Den’ style activity when the group invented the ‘Handy Andy’, an aid to support those with poor grip. The judges were really impressed that they were the only team in which each member stood together and played a part in the presentation.

They then had to give their business a name and then brand it. They came up with ‘Bubble and Fizz’. Next, they called on the experience of a member of staff at Coleg Elidyr, Scott, who prior to working at the college was a graphic designer. He gave the students a talk on logo design and using their ideas, guided them through the process of creating their company logo.

They were delighted when they won ‘ best logo’ in the National Young Enterprise Category 2018.

Next, they had to raise funds to purchase materials to make a range of soaps and bath bombs. Under Young Enterprise rules they could only raise £500 with each individual shareholder only allowed to purchase a maximum of £25 worth of shares. They raised £500 within no time as many of the staff and Trustees at Coleg Elidyr were more than happy to invest in the project and become a stakeholder.

The team ordered stock and got straight down to production. A Tutor at Coleg Elidyr was able to ensure that all their creations were approved for Safety Assessments and Trading Standards and registered with the European Commission and, with support from staff at Coleg Elidyr, they produced easy to follow guides for the recipes that meant all the

team were able to be part of the production.

The Christmas Trade Fair 2017 at IKEA Cardiff was the group’s first opportunity to sell their wares. It was a very busy and successful day and the group were awarded two out of the three awards given that day.

They were for ‘Best Brand’ and ‘Best Stand’.

After only 24 hours of going live with both their website and Facebook page they received an enquiry for products

As well as producing a website www.bubble-fizz.co.uk and a Facebook page @bubbleandfizzwales the team have also attended several craft fairs locally. They also persuaded the local Co-op in Llandovery to allow them to have a stall in their store.

After only 24 hours of going live with both their website and Facebook page they received an enquiry for products. The sales team secured an incredible order for 50 soaps and

50 bath bombs to a local company Ystrad Nurseries. Since then they have secured further orders with several local companies.

The Bubble and Fizz team have accumulated an astonishing 13 awards including the top award of National Winner Best Team Programme. One member of the team, Douglas, deserves special mention for his achievements as he won the ‘Sir John Moores’ Special Achievements Award for Wales.

Douglas, who has autism, severe learning disabilities, anxieties and OCD, is a cheerful young man who needs encouragement to interact with those around him. He finds it extremely difficult to manage unfamiliar places and situations and finds crowds of people and noisy environments difficult to manage.

During the process Douglas learned to manage his anxieties and coped with large crowds whilst helping to deliver presentations to large audiences.

Coleg Elidyr is a specialist further education college for young adults with learning difficulties and disabilities based in rural Carmarthenshire and is the only college in Wales to have achieved National Autistic Society accreditation.

For more information about Coleg Elidyr visit www.colegelidyr.ac.uk

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SLEEP DEPRIVED MUM

NEW CHILDREN’S CAR SEAT CAMPAIGN RiDC, The Research Institute for Disabled Consumers, and the charity Driving Mobility have collaborated to launch an awareness campaign focusing on specialist car seats for disabled children.

RiDC has over 50 years’ experience of user-centred research involving disabled and older consumers. In response to a growing demand from families and carers with disabled children, RiDC have introduced qualified and unique information about specialist car seats and harnesses.

Driving Mobility oversees a network of 20 independent organisations, many with satellite centres, which offer professional information, advice and driving assessments for people seeking assistance with mobility. This charity will be supporting RiDC to raise awareness of its independent car seat research and advising its driving assessment centres to provide this vital information to service users.

The campaign aims to ensure that children who require additional postural assistance whilst travelling in a car, can benefit from greater safety and comfort. Signposting towards specialist suppliers, such as JCM Seating, R82 and Recaro, is being provided along with key features and estimated prices.

For more information, visit www.drivingmobility.org.uk

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develops successful sleep aid

SARAH MCGAW AND HER FAMILY WERE EXHAUSTED...

H

er daughter Lily was diagnosed with classic Autism in January 2018 (aged 4 and a half) and one of her big challenges is sleep disturbance.

Lily would not even go into her bedroom to play, so settling her to sleep in the evenings was very difficult. In the past, Sarah had tried several weighted blankets to help Lily settle; calming sensory lights and various other ways to gently encourage Lily to sleep in her own bed, but none had worked. Lily is very sensory and likes skin contact to fall asleep, so Sarah’s evenings were completely monopolised by the bedtime routine and she was very sleep deprived. The situation was also a great strain on her older sister, Emma.

Sarah had heard about a product called Fidgetbum on a sensory Facebook group, but was hesitant to buy another product that she felt ‘probably wouldn’t work’, as nothing else had.

Fidgetbum is a sleep aid, designed by a sleep deprived mum, which wraps around the mattress, zipping over the child to provide a sense of security which sleep experts have likened to “a warm hug”. Made from super stretchy, breathable fabric, the gentle pressure which the Fidgetbum brings, soothes,

relaxes and reassures the child.

Sarah explained: “After a few days of contemplating paying more money for an item that probably wouldn’t work, I took a chance and ordered one. Well, all I can say is, it’s the best money I’ve ever spent. Lily absolutely loves it. With her Fidgetbum on her bed, she now falls asleep by herself and stays there for a couple of hours, giving me some much needed ‘me’ time in the evenings as well as time with my older daughter.”

For more information on the sleep aid, visit www.fidgetbum.co

Lily’s mum Sarah was at her wits end before she found a sleep aid that has made all the difference

THEY’VE ARRIVED, THREE NEW PRODUCTS! •

The Felix school chair is the simple, stackable, wooden school chair.

The chair comes with a choice of vibrant covers that are removable and can be wiped clean. The chair also features an anti tip design.

•

Our new electric hi-lo base allows for a tool and stress free adjustment in height, provides increased maximum user weights and the base is available on three of our most popular chairs; Indigo, Strato and the new Brookfield+.

•

The Sunni canteen chair is all about inclusion by allowing your child to sit and socialise with their friends but also providing them the support they require in a seat.

For more information on any of the products please contact us smirthwaite | email us info@smirthwaite.co.uk | call us 01626 835552

Introducing a revolutionary new bedding range ideal for your whole family Scan Mobility has announced, in partnership with B-Dermofresh, the launch of a revolutionary new bedding range.

100%

waterproof fitted sheets and pillowcases

B-Dermofresh is the new generation of technical textiles, incorporating zinc oxide which is essential for skin protection and regeneration. With these unique benefits specially conceived for bedding products, this innovative new system is the perfect, smoothest, natural sustainable fibre, with an unnoticeable pioneering second skin membrane. 100% waterproof, breathable fitted sheets and pillowcases, which are soft to the touch.

Protection for everyone.

• Discreet rustle free incontinence protection, with odour removal.

• Dust mite proof barrier with antibacterial fabric, helping allergy sufferers • Thermoregulating

• Hypoallergenic • Cosmetic effect/skincare benefits • Ideal for children & practical for parents • Machine washable and dryable

Call 01704 233344 or email sales@scanmobility.co.uk www.scanmobility.co.uk Be Smart.

B-Dermofresh.

25

OVER

88,000

grants make a real difference

IF YOU ARE RAISING A DISABLED OR SERIOUSLY ILL CHILD OR YOUNG PERSON, THEN YOU MAY BE ELIGIBLE FOR A GRANT FROM THE FAMILY FUND

F

amily Fund is the UK’s largest charity providing grants for families raising disabled or seriously ill children and young people. Last year, it provided 88,407 grants or services worth over £33 million to families across the UK. Someone who has benefited from a grant is Oscar, who is four and lives in Hessle, Yorkshire with his parents and younger brother. Oscar has cerebral palsy, which severely affects his mobility, making it hard to take part in family activities.

“He can’t sit, he can’t stand, he can’t talk and he can’t walk,” explains his mum, Emily. “He is really clever though. He wants to do everything and he wants to be involved. He can see what his little brother is doing, and he wants to do the same and copy him.”

Oscar’s parents are currently saving to send Oscar for an operation in the US, meaning they have little money to spare on specialist equipment. “We are trying to raise £90,000 to get Oscar to the US for life changing surgery.

He has really tight hamstrings and a lot of spasticity in his legs. An operation that they do there would reduce all the spasticity in his legs permanently.”

“That would mean that he was a lot more comfortable,

26

and he would be able to come off a lot of his medication.

At the moment, he takes a lot of muscle relaxants, which doesn’t help with his head control and all of the side effects that come with taking medication. The operation would also give him a lot more potential for eventually walking.”

The family applied for a Family Fund grant to purchase specialist equipment that would allow Oscar to become more involved in family activities. The equipment, made for them by Firefly, harnesses Oscar to an adult, allowing him to walk and play with them.

“The piece of equipment helps Oscar get involved with a lot more family activities. Now he can play football in the garden and we have taken him to the farm so he can feed the goats. It has just helped Oscar get a lot more involved with the everyday things we do.”

“We wouldn’t have been able to afford the equipment ourselves if we hadn’t received a grant, and without the equipment, Oscar would just be sat in his wheelchair in the garden.”

For more information, visit www.familyfund.org.uk

Two ISC catheters specifically designed for Mitrofanoff use.

• Unique 360° flexible tip to help with difficulties with insertion into a Mitrofanoff.

• Size 14 CH has been designed with 4 smooth eyelets to allow superior urinary and mucus drainage from the Mitrofanoff.

Smooth flexible tip for easy insertion

• Natural solvent free water based hydrophilic coating with Aloe Vera.

• Includes an easy to open water sachet.

• Unique 360° flexible tip for easy insertion.

• Size 14 CH has been designed with 4 smooth eyelets to allow superior urinary and mucus drainage from the Mitrofanoff.

Interested in trying our catheters? Contact us for a sample by visiting www.hunterurology.com or call us on 01392 340169



01392 340169 www.hunterurology.com

27

Martin Davy believes that listening to customers has been one of the keys to success for the company

THINK YOU CAN MAKE IT

better?

WHY NOT LET THE SUPPLIERS KNOW!

O

ne company that has always made an effort to find out what their customers and potential customers think of their products is Delichon and it has been a contributor in positioning the business as one of the UK’s top providers of Custom Seating for wheelchair users. Delichon also manufactures its own 3-Wheel Delta All-Terrain Buggy suitable for children and adults and are the UK distributor for the amphibious Hippocampe AllTerrain Beach Wheelchair.

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LISTENING TO YOUR CUSTOMERS IS ONE OF THE MOST IMPORTANT THINGS THAT A BUSINESS CAN DO, BUT IT DOESN’T ALWAYS HAPPEN OF COURSE

We caught up with Martin Davy, who set the family business up in 1996 with P-J Davy. to find out more about how they had benefitted from customer feedback.

Both Martin and P-J were working in the NHS in a spinal unit and in a department manufacturing items for wheelchairs when they had what they describe as a ‘middle of the night brainwave’. It was for what became the Foam-Karve machine, a system for manufacturing custom seating for wheelchairs. That was in 1991 and

the idea went on to be copied worldwide, with the Foam-Karve name being adopted as a generic name for many types of custom contoured foam seating.

“Producing custom seating as we do” Martin explained, “we spend a lot of time with our customers and so, over the years, we have had lots of discussions with people about how their products, such as wheelchairs, just didn’t work for them or the family at certain times. They told us that they wanted something lighter

and easier to be able to go to more places and do more things.”

“That’s where the whole concept of supplying 3-wheel buggies came from. They gave families more options at weekends and they could get out and do more. Initially we started supplying other brands and working with them to develop special versions that would work better for customers but a few years ago we decided that we would design our own product from scratch and put all the best bits of everything we had ever sold into one product.”

Martin is a big fan of getting in front of an audience: “We incorporated an awful lot of things that we had heard from customers and the best way we have found to get that valuable feedback is to exhibit at shows where we can display prototypes and different versions of the product and find out what customers think of them.”

According to Martin, Delichon as always run a really customer-led design system. “It makes a lot of sense to do that as if you just produce something that they don’t like, then of course they are not going to buy many of them. Right at the beginning of the business we were going to exhibitions and showing people what we thought they wanted to see, but you have to listen so that you are not just creating ideas that people don’t want or don’t need.”

“We don’t always get things right in the design stage” Martin admitted, “and the very first models of our Delta buggy had a few issues

with balance and although it was a successful product and there are a lot of those initial models out there, we took the big decision to create a version of the product with an adjustable axle so that people could set it up just as they wanted.

If, for example, you have a child that rocks a lot or you wanted to make it more stable for running, then you can move the wheels back to make it more stable. Although

The best way we have found to get that valuable feedback is to exhibit at shows where we can display prototypes and different versions of the product

that might sound a small thing and it’s a common feature on high end wheelchairs, it isn’t something that is very common in the buggy market and it was the customer feedback that drove that change and that innovation.”

“We have a significant amount of people who go running with their buggies and so we also designed more legroom underneath it and gives you a lot of stride length. We

have also created better brakes and better tyres along the way too. It’s all about listening to what people want to do with the product. We have created custom buggies for people who run marathons and working with customers who need something very specific to be able to do what they want to do is very fulfilling.”

Listening to customers has definitely paid off for the company and one of the clearest indicators of that is the investment in what Martin describes as ‘an amazing new building’. “It’s completely customer focussed and it’s the biggest thing we have ever done as a company” he told us, “we have tried to include everything that our customers told us that they wanted into one building and I think we have created something very unique with a fully accessible showroom and even a changing places toilet. It means that we can offer a complete fitting service in a day and we have people travelling quite a distance to come and see us.”

He added: “We have direct access onto a cycle path too and so customers can try out the products very easily.”

Martin and the team at Delichon are always on the look-out for new ideas and comments about their products and so the next time you see them at an exhibition, why not stop by for a chat.

The website for the company is at www.delichon.uk

The smart brand new headquarters is the result of constant product development

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LOVE IT OR HATE IT? HERE’S YOUR CHANCE TO RATE IT!

R

ate it!, is a new product review website where you can give your opinion on the products that you are buying and using.

The Rate it! project is run by three user-centred organisations: the Research Institute for Disabled Consumers, the Leicestershire Centre for Integrated Living, and Enabled by Design. It’s funded by the Big Lottery Fund and has been launched to provide independent reviews written by product users, the experts who know exactly what works and what doesn’t.

Every month Rate it! is giving away a prize. Every review written at bit.ly/RateitSignUp will count as a single entry.

You can help make it a success by signing up and Rate it!

The website is at https://rateit.ridc.org.uk

RATE

it!

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SLEEP

issues?

BEHAVIOURAL APPROACH PROVES HIGHLY EFFECTIVE

R

as a Sleep Practitioner and suggested esearch shows that children that Luke be her case study. and young people with special “I honestly didn’t believe it would educational needs and work, but Claire was determined disabilities are at risk of developing to support us and I decided to give sleep issues. The Children’s Sleep it a go. Luke had always been so Charity uses a behavioural approach miserable and looking back he to sleep that it claims is highly was chronically sleep deprived. I’d effective. been unable to return to work as The charity believes that sleep I’d planned and was feeling quite issues are highly unlikely to resolve socially isolated. We were asked to without intervention and that leave a parenting group because changing sleep habits is hard work he constantly cried, I really could and it is essential that families and have done with the company. I young people are well supported by followed the new sleep skilled practitioners. programme and Claire A recent research offered ongoing support, project that the charity it was tough but Luke took part in with Sheffield started to sleep through City Council and Sheffield the night for the first Children’s Hospital found time ever, I was amazed! that on average children This is why I went on to gained an additional 2.4 train to become a Sleep hours sleep per night Practitioner, to help when using the methods. others who have been 100% of families who took Jack is benefiting in my position.” part in the project shared from a behavioural Claire explained: with researchers that approach to sleep “My son Jack also has they would recommend the Cerebral Palsy and his sleep issues programme to others. impacted on the whole family. His Claire Earley and Carol Batchelor brother became sleep deprived and are both Sleep Practitioners with the was unable to meet his full potential, charity and offer support through Jack was often unwell as it affected the organisations commissioned his immune system and I became very service in Doncaster to over 300 down. Using a behavioural approach tired families each year. Both have to sleep was life changing for us all. young men with complex needs and Jack is 19 years old now and sleeps have experienced first-hand the huge well, he has had no unplanned impact that sleep deprivation can hospital admissions since his have on wellbeing. sleep improved. I’m now employed Carol’s son Luke is 17 years old as a Sleep Practitioner and love now and sleeps well thanks to her supporting families to improve sleep knowledge, this hasn’t always been patterns. It’s not easy but it is worth the case however. Luke has Cerebral the hard work.”

Palsy and Carol was told by numerous health professionals that this would To find out more about the charity impact on his sleep and there was visit www.thechildrenssleepcharity. little that could be done to improve org.uk this. Carol was therefore resistant initially when her friend Claire trained

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

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dream AMERiCAN UNiVERSiTY H

H

H

comes true for Tilly

18-YEAR-OLD TILLY GRIFFITHS FROM STOKE, HAS JUST STARTED A FOUR-YEAR COURSE AT STANFORD UNIVERSITY 32

She is enjoying her time at Stanford University

W

hat makes it truly remarkable is that Tilly was born with Spinal Muscular Atrophy Type 2, a neuro muscular condition which means Tilly has the equivalent strength of a new born baby. Tilly requires a 24hr care package and she is the first student from her part of the country and possibly the first in the UK to have the cost of this covered by the NHS when studying overseas.

Something else that has helped Tilly is a new powered wheelchair, a Piccolino, supplied by Precision Rehab.

Tilly has used wheelchairs and powered wheelchairs from an extremely young age as she explains: “Throughout my life, the chairs I have had have been a huge part of my life and everything I have achieved – allowing me to be the person I want to be. When I received confirmation that I would be able to start university thanks to the NHS covering the cost of my care package I knew I would need a new chair as my previous one was starting to show its age.”

Once funding has been secured from the Newlife Charity, she got in touch with Matthew James of Precision Rehab, who she has known since she was at Primary School.

However, this wasn’t a straightforward order as Tilly required a chair with very bespoke adjustments and the deadline for leaving for America was very tight.

Tilly’s chair is fitted with a K120 seat which can accommodate paediatrics and small adults as its flexible design allows for growth and support as the seat system will adjust to accommodate postural changes.

Upper body supports including thoracic supports can also be fitted and alternative seating options are also available including Jay and moulded seat systems.

The design of the chair and its ability to go into a horizontal position means it can also convert into a changing table so Tilly and her carer do not have to worry about always being in close proximity to hoists or slings.

Due to Tilly’s lack of strength, her chair has to have a highly sensitive joystick and Precision Rehab addressed this by fitting a Micro Glide mini joy stick, while the R-Net Omni display unit allows Tilly to monitor her speed and functions and control all parts of the chair independently including Bluetooth and infra-red devices.

“I love my new chair” says Tilly.

“Matt has done an amazing job to incorporate all the features I wanted – right down to a phone charger and new mouldings on the base of the chair as I wanted them to look sleeker.”

One of the most important additions to the chair was the fitting of Neater arm supports which Tilly has been using since starting middle school as Tilly’s mother Jackie explains: “When Tilly started middle

To be accepted into Stanford, she needed to gain A and A stars, which she achieved and recorded results which placed her in the top 1% in the entrance exam worldwide.

school, she was determined to be as independent as possible and this included being able to feed herself and the arms supports from Neater Solutions enable her to do this and so much more. Not only do the arm supports enable Tilly to feed herself, use her laptop and play the piano they have also had a positive effect on her respiratory function. The arm supports support her forearms and rotate her shoulders back and Tilly’s respiratory consultant has continually been impressed with her respiratory function and believes it

Tilly’s says her new chair has been a real help

is probably down to her using her shoulders and therefore improving her posture as without arm supports Tilly’s arms would sit in her lap 24/7.”

Tilly is a true inspiration to other teenagers living with a disability.

To be accepted into Stanford, she needed to gain A and A stars, which she achieved and recorded results which placed her in the top 1% in the entrance exam worldwide.

Jackie continued: “We are incredibly proud of Tilly and what she has achieved. She is now settled into university life at Stanford and I cannot thank everyone involved enough.”

Matt is delighted with the positive feedback about the chair. “Over the years I have known Tilly she has never failed to impress me with her determination to live life to the full despite her disability. We believe that every client is unique and so go the extra mile to find a bespoke solution to ensure every client receives a chair which meets all their individual requirements.”

Precision Rehab can be contacted on 01256 300111 or visit www.precisionrehab.co.uk The Newlife website is at www.newlifecharity.co.uk

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Emergency

EQUIPMENT LOAN SERVICES

OPTION FOR FAMILIES

Barney and his Mum with their Mascot Care Cot which is a product available through the loan scheme

THERAPOSTURE, SPECIALIST IN ADJUSTABLE CARE COTS AND BEDS SUPPORT NEWLIFE’S EMERGENCY EQUIPMENT LOAN SERVICES WHICH HELP CHILDREN AT RISK OF SERIOUS INJURY AND THOSE IN URGENT NEED BECAUSE OF UNSTABLE LIFE THREATENING/LIMITING CONDITIONS OR TERMINAL ILLNESS

T

heraposture product loans through the charity Newlife are free and available across the UK and often results in a solution being in place within 72 hours.

Newlife understands that some children just don’t have time to wait for assessments and urgently need equipment and so provides the UK’s only rapid response equipment loan service.

Newlife’s Care Services team talk

34

you through the application process.

They will interview you and your local health or social care professional and once you have accepted the terms and conditions delivery of the equipment will be arranged.

Theraposture will deliver, install and also provide ongoing support and maintenance of the equipment.

If a child/young person is under 19 years old, is a permanent resident in the UK and is at immediate

risk of significant injury, has a life threatening/limiting condition or is terminally ill, then you could be eligible for an Emergency Equipment Loan.

To apply, call Newlife’s Care Services Team on 0800 902 0095 Visit www.newlifecharity.co.uk for more information

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Charity number: 224742

35

CLEVER REMINDER FOR DAILY TASKS Memrabel was designed to help older people remember daily tasks, such as taking medications, when their favourite TV programmes were on the TV and appointments.

However, it is also being used for younger people too, such as youngsters with autism.

There are over 100 preinstalled media files with typical daily reminder videos, pictures and voice memos. Even better, you can create your own videos, graphics and voice reminders and use them for timed reminder playback using MemRabel’s media player. The latest model allows complete creation and setup of daily reminders from a Smartphone.

Examples of the reminders would be: 8.15am – “It’s time to have a wash” 9.00am – “Good morning, it’s time to make breakfast” 1.30pm – “It’s time to take your afternoon tablets” 5pm – “It’s time to do your exercises” 8.00pm – “It’s time for your favourite TV programme” 9.30pm – “It’s time to go to bed, make sure the doors are locked” For more information, visit www.easylinkuk.co.uk

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WHAT’S

new?

IS THIS THE ULTIMATE COOL POWERCHAIR FOR YOUNGER USERS?

T

GA says that the transportable WHILL Model C powerchair appeals to older children and young adults with its minimally ‘cool’ looks and pioneering manoeuvrability.

Its integrated patented ‘Omni’ front wheels consist of rubber rollers within the wheel which enables the WHILL to turn on its own axis. Combined with technological advanced features developed in Japan such as a ‘mouse’ joystick, remote control App and

intelligent on-board safety software, WHILL Model C appeals to all young tech fans.

The sleek aesthetics are matched by slick engineering which allows the lightweight WHILL Model C to be dismantled into three easy-to-lift parts for transportation in a car.

For more information, call 01787 882244 or visit www.tgamobility.co.uk

NEW HEIGHT ADJUSTABLE BASIN

A

new height adjustable wash basin with enhanced features that assist hygiene control has been launched by Pressalit Care.

The Matrix Medium has new integrated power buttons for raising and lowering the basin, and to aid all important hygiene control has incorporated all plumbing into a discreet, concealed unit. The Matrix Medium also features Pressalit

Care’s grab handles at the front of the basin.

The concealed plumbing aids hygiene control; the smooth curved lines of the bowl make cleaning easy; and integrated handrails, as well as providing valuable support, have smooth lines and no hard to reach corners.

The Matrix Medium basin has a rise/fall of 200mm. The slim

lifter unit allows wheelchairs to manoeuvre close to the wall.

Securing the unit above the skirting provides much better access for wheelchair footplates and allows for slip-resistant flooring material to curve up the wall.

For more information, call 0844 880 6950 or visit http://en.pressalit.com

New bedding generation ideal for children and parents Scan Mobility has announced, in partnership with B– Dermofresh, the launch of what it describes as a revolutionary new bedding range incorporating zinc oxide which is essential for skin protection and regeneration. The range consists of fitted sheets, duvet covers, pillowcases, travel pillows and bibs.

The company says that the new generation of technical textiles is the smoothest, natural sustainable fibre, with an unnoticeable pioneering second skin membrane on breathable fitted sheets and

pillowcases which are 100% waterproof.

With discreet, rustle free incontinence protection, the dust and mite proof barrier helps allergy sufferers and the company says the products are ideal for children while being practical for parents.

There is a wide range of sizes and colours available to suit both children’s and adult size beds.

For more information, call 01704 233344 or visit www.scanmobility.co.uk

37

finances

MANAGING PERSONAL

FOR HEALTHCARE NEEDS

BY JAMES MARTIN APFS, CITY ASSET MANAGEMENT

M

obility aids, house adaptions, long term care costs, legal fees… the list of costs and expenses that may be required by an individual with health care needs go on! How does one plan meet all these expenses required now, and in the future, particularly where a lump sum is received at outset following a medical negligence or personal injury claim? The answer focuses around two key skills: planning and appropriate investing.

“By failing to prepare, you are preparing to fail” – Benjamin Franklin The art of financial planning starts with understanding what expenses are likely to be required, both now and in the future, taking in to account external factors such as inflation, which will impact prices in the future.

This process creates a cashflow model; a picture of how the finances are likely to look for the life of the individual. In making a cashflow you have to make assumptions about the future and inevitably assumptions are highly unlikely to play out perfectly in the future so stress testing the model by varying the assumptions and building in cautious parameters is critical. For instance, if there is a life expectancy of 20 years then it is prudent to plan for 25 or even 30 plus years as life expectancy is only an estimate and does not take in to account unknown future medical advances. Outliving capital can have a catastrophic impact. The result is a lifetime snapshot of an individual’s

38

finances which highlights if there is a shortfall, what can realistically be budgeted for and what level of return is required from assets to meet the long-term expenditure needs.

Once the lifetime financial picture has been painted and the level of return is known then this creates a ‘destination’ of what is required. The next step is to plan a route to this destination and to avoid any pitfalls on the journey. As with any planning for a journey you look at the most efficient route; in financial terms this largely centres around tax efficiency; reducing tax using available allowances or placing assets in suitable tax structures.

The fuel for the journey is powered by what investments are needed to meet long term expenditure.

The rate of return required and level of risk that can be taken are key in determining what blend of assets are appropriate to meet the individual’s needs. This will entail a broad spread of investments in cash, fixed interest securities, equities and alternative assets. The balance of

MORE ABOUT…

the investment, often referred to as “Asset Allocation” will be dependent upon the return needed and risk tolerance. The skill is in creating the right blend of assets and selecting the best of breed within these asset classes to best achieve the returns required for the individual.

This is not a one-stop show as journeys can change – diversions can be encountered. The assumptions used in the plan and investment strategy are not static as the world is ever-changing and there are hundreds of variables which can influence a plan. Additionally, individual’s needs are likely to change over time, e.g. healthcare costs may rise. Therefore, reviewing the plan and subsequently the investment strategy is an ongoing requirement to ensure it is fit and proper to meet the desired outcomes. This highlights the need to build-in caution and flexibility to the original plan, otherwise even the best laid plans cannot adapt and subsequently fail.

City Asset Management is an investment management company with a financial planning arm that is dedicated to the maintenance and preservation of the asset base and wealth of its clients. The company aims to offer a more personalised and flexible service-led approach than that which is typically offered by many larger wealth managers and private banks.

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SUPPORTED INTERNSHIP

success

OVER 50% OF STUDENTS AT HEREWARD COLLEGE IN COVENTRY HAVE SECURED PAID EMPLOYMENT THIS YEAR AS A DIRECT RESULT OF THEIR PARTICIPATION IN THE COLLEGE’S SUPPORTED INTERNSHIP PROGRAMME

S

upported internships are a work based study programme aimed at young people (aged 16 to 24) who have an education, health and care plan, and need extra support to move into employment.

Hereward College is an FE college for young people with disabilities and additional needs, which provides its learners with a varied curriculum that focuses on skills for independent living and employment.

The college has been running the supported internship scheme since 2014 and has developed established and expanding programmes with a number of national and regional employers including Severn Trent, WM Housing, Arlington Automotive, Holiday Inn and Balfour Beatty.

Learners take part in the programme for 10 months with one of the college’s partner employers and spend up to 30 hours a week working in a range of different areas, gaining valuable experience with the support of an onsite Hereward Job Coach.

Interns also undertake an accredited Employability Skills qualification and take maths and English qualifications suitable to their level.

Hereward’s supported internships are available to young people both in the local area and nationally on a residential basis.

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Since the programme began, Hereward College has seen a year on year increase in students doing a supported internship with 24 learners taking part in the programme in 2017, 34 learners in 2018 and a target of 50 learners doing placements by 2020. This

This year over 50% of supported interns were offered a job directly with their employer as a result of their participation in the programme.

The national average for people with learning disabilities in employment is 7%.

year over 50% of supported interns were offered a job directly with their employer as a result of their participation in the programme. The national average for people with

learning disabilities in employment is 7%.

Harriet, ex-Hereward student and Holiday Inn Kenilworth employee said: “I was diagnosed with autism at 15 and was very shy and introvert – unable to walk down corridors alone.

Since being a student at Hereward and taking part in the supported internship my confidence has grown enormously, and it has been a real journey for me.”

She added: “I love my job as front of house receptionist at the Holiday Inn, the staff are so supportive and really accommodate my needs. The supported internship programme is a wonderful opportunity to prepare those who need additional support to experience real life work skills and help build confidence.”

For more information, visit www.hereward.ac.uk

Harriet is one of the Herewood students who is now loving her job

*

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

41

The importance of

THERAPEUTIC

POSITIONING

BY ANNA WAUGH, MANAGING DIRECTOR, SIMPLE STUFF WORKS

N

at night time

children and young people who access this intervention. ight time positioning is a gentle, supportive Therapists who have a thorough understanding of the therapeutic intervention designed to protect an biomechanical principles of body shape distortion can individual’s body shape. When used correctly utilise the long hours of night time to position children it protects and restores body shape, muscle tone and and adults in such a way as to protect their body shape quality of life. and even restore previously established distortions.

The story began 40 years ago. In 1976 Fulford and Excitingly we also now have objective outcome measures Brown first suggested that “the ‘squint’ baby syndrome that we can use to demonstrate and the ‘windswept’ child syndrome these improvements in body in children with cerebral palsy are shape, the Goldsmith Indices of stages of the same syndrome Body Symmetry. and that in both the deformities 10-year-old, Sophie Cooper are caused by the effect of gravity is a fantastic example of a child on an immobile growing child, Excitingly we also benefitting from night time rather than spasticity or muscle now have objective positioning. Sophie was born imbalance. prematurely at 24 weeks with In 1976 there was no valid or outcome measures Cerebral Palsy GMFCS 5 with recognised method of measuring that we can use to Dystonia. Sophie also has Chronic body symmetry and therefore demonstrate these Lung Disease, Epilepsy, gut motility the process of distortion was not improvements disorder, Auditory Neuropathy and understood. Neither the impact of uses long term ventilation. pursuing function nor the effects on From a very young age Sophie the body of long term positioning needed help with sleep positioning strategies were monitored. but her parents struggled to find Pressure care to protect tissue a solution that really worked for her. That was until her viability was established but the need to protect skeletal mother Leanne attended Sophie’s Action for Children structures and internal capacity of the abdomen and Creche and was introduced to Sarah Clayton, CEO of thorax along with resultant function of the vital organs Simple Stuff Works, as she explains: “Sophie's keyworker was not recognised. Distortion of body shape was was due to attend a training/information day which I was synonymous with disability and considered inevitable told would be was aimed at professionals. However, whilst servicing the problem became the foundation of an Sophie's keyworker, knowing what a passionate advocate industry.

I am for my daughter, asked if I would be able to attend Over the last 40 years research has developed which as Sophie was only a toddler at the time and I was still demonstrates the quality of life improvements for

42

leaving us less stressed and Sophie's sisters are also able to get a better night’s sleep with no more wakeful episodes or emergencies.”

The base of the system Sophie uses comprises of two layers of nonslip mesh between which supports are placed around her. The supports can be lateral supports, wedges, pillows or teddy bears, ensuring that this Positioning System is the most versatile solution available and as there is no noise there is a greatly reduced chance of Sophie being disturbed during the night. Hygiene is of paramount importance when using a sleeping system and the Positioning System from Simple Stuff Works contains silver which has been proven to actively combat communicable diseases such as MRSA, Salmonella and E-Coli through the application of SteriTouch. SteriTouch is made up of a range of antimicrobial additives which reduce the growth of harmful organisms including bacteria, mould and fungi.

For more information on the full range of award winning postural positioning solutions and training available from Simple Stuff Works call 01827 307 870, email admin@simplestuffworks.co.uk or visit www.simplestuffworks.co.uk kidz to adultz 88x135.qxp_Layout 1 24/09/2018 13:07 Page 1

Queen Alexandra College A National College for People with Disabilities

learning about Cerebral Palsy and worrying about what the future might hold for her. The training day was a very real look at where things could go wrong if we didn't continually review and monitor Sophie's body shape which is something no person/professional had ever taken the time to tell me before.”

“The difference Sophie’s sleepy system has made is amazing! To start with it is so much easier to put on. With the old system, we had to wait for Sophie to fall asleep and then carry her to bed because the look and sound of her old system would escalate into a dystonic episode/ seizure. With the sleep positioning system from Simple Stuff Works Sophie will happily go to bed and allow us to put the soft rolls, cushions and knee cosy around her. The system has dramatically improved Sophie's quality of sleep leading to improvements in her mood and alertness during the day and I would definitely go as far as to say improving her cognitive ability because she was then able to stay awake for longer and sit for longer periods of time without leading to distress and pain. With those positive improvements, it allowed my husband and I to sleep better and therefore enable us to function better during the day. The system has alleviated a massive worry about her body shape and positioning

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

Make Our College Your College Programmes for learners aged 16 - 25 include: l Entry Level: Preparation for Life and Work

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

l Wide range of vocational qualifications l Personal development, social skills & independent living l Assistive technology, rehabilitation and travel training, speech and language therapy

www.qac.ac.uk

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

43

UNIVERSITY DOESN’T

HAVE TO BE A

challenge…

WHILST THE EXCITEMENT OF FRESHERS’ WEEK MAY HELP TO SUPPRESS THE ANXIETIES OF LIVING INDEPENDENTLY FOR THE FIRST TIME, AS THE PARTY DIES DOWN AND REALITY KICKS IN – THE STRESSES OF UNIVERSITY LIFE CAN ALSO BEGIN TO SINK IN

B

ut there’s no need to panic, help is at hand.

Chris Benoit-Pool, co-founder of AskJules, offers some guidance and advice on adapting to these changes and the key decisions which can make the difference in ensuring a successful university experience.

AskJules is a family business, created in 2008 when Chris’s mother Julie Pool helped his younger brother Oliver, who suffers from Spinal Muscular Atrophy, to leave home and go to University. With Julie’s support Oliver has achieved true independence and enjoyed the full student experience. He lived independently in a lively student area of Manchester and employed his own team of PAs, who provided his 24/7 care and student support. He has recently started a PHD in London,

44

where he lives with his girlfriend and two children.

Here, Chris shares ways to ensure you have everything in place to boost your confidence as a new term starts:

It is so important to choose the course that you have a passion for and enjoy

Get the right care package Sounds simple enough, yet from my

experience those with a disability tend to focus on what they can do for themselves during their assessment, however it is imperative to highlight what they need support with.

I advise you to imagine yourself on your worst day. Everyone has them.

This is the level of care and support you require. You will then have the correct care package to support you even on those days when you spend more time in bed on antibiotics than in lectures.

Choose a course that you enjoy It is so important to choose the course that you have a passion for and enjoy. After the craziness of freshers’ week passes and you settle into your timetable many students have a moment of panic and regret that they might spend 3 or 4 years

on a course in which they have no real interest.

The cold, dark and rainy mornings of November are when I believe many students decide if university is for them or not. So having a passion and genuine interest in a subject will make the getting out of bed a lot easier.

The right university for you, not for accessibility – Campus vs City Universities Growing up with a disabled brother we as a family tended to view the world with a “how accessible is it?” mind-set. This was applied to everything - schools, friends’ houses, train stations, birthday party venues and local parks.

When choosing the university at which you plan to spend the next 3 years of your life, accessibility should not be your only priority, as location also has a part to play.

From my experience Campus universities tend to be very accessible, have a safer atmosphere, are easier to get around and have better facilities in comparison to City based ones.

However, after the first few weeks when the campus has been explored students tend to turn their attention to the nearest large city for its shopping and nightlife. This is almost always done by using the arranged transport to and from the campus. As a result, you can

end up staying on campus whilst the other students venture out and enjoy making memories together.

City centre based universities may be slightly older looking, have dated accommodation and can be more expensive. However, it is certainly worth it and more, if it means you are able to enjoy the same experiences as other able-bodied students.

City universities are usually livelier, often having more choice of things to do and places to go out and there is no need for the dreaded buses back to campus.

Choose the right support staff It’s like Christmas and your birthday rolled into one! You finally get to choose who provides your care and support! You may go from no choice at all to complete choice and control.

For many students it is too much to get their heads around.

From our experience after hosting hundreds of interviews with clients and applicants we notice that clients tend to have definite preferences for specific characteristics they want in their PAs. The difficulties come when they employ a team of 4 support workers who are all the same.

University life is very much a balancing act. You do not want all your support staff to be crazy party animals nor do you want a team of academics.

I always advise our clients to think of their support team like a football team, you do not want all goalkeepers nor do you want all strikers, you need a balance. Just like you do at university.

Make use of the university's disability office Make sure you meet the disability support officers in person. Are they welcoming and enthusiastic, do they have a can-do attitude, do you feel you could go to them if you had a problem? Take note of where the office is situated which will tell you a lot about the university’s stance on disability – is it in a well-resourced central office, or a broom cupboard on the edge of campus?

Ask the university how many students they have with your condition or a similar disability. Ask to be put in touch with a current student with similar difficulties to yourself – they will be a mine of information and tips, and will be able to give you a first-hand view on how well the university can support your needs.

Contact Chris and the AskJules team at www.askjules.co.uk, chris@askjules.co.uk or 01784 482767, and begin your journey to a successful university experience.

45

ARCHIE CELEBRATES

new found

freedom A STUDENT WHO ALMOST LOST HIS LIFE TO SEPTICAEMIA IS NOW ENJOYING A MORE MOBILE, CONFIDENT AND BODY-POSITIVE LIFE THANKS TO ORTHOSES SPECIALLY MADE FOR HIM

A

rchie Veale, 20, from the Isle of Man, spent five months in Alder Hey’s children’s hospital in Liverpool in 2014, after what began as a back ache ended in multiple organ failure through septicaemia, followed by compartment syndrome in his legs.

His devastating illnesses left him with damage to his muscles and nerves, and after 17 months of using a wheelchair and intensive physiotherapy, Archie progressed to walking with crutches, with the aid of ankle orthoses to help him move more naturally.

He was also successful at school, passing his A-Levels and winning a place at the University of Salford to study prosthetics and orthotics — a

46

subject he chose as a direct result of his illness as he wished to help others with similar needs to him.

After Ottobock’s orthotics representatives gave a talk at the university, it led to Archie getting a custom carbon fibre ankle foot orthosis (AFO) for his right leg, and a WalkOn Reaction orthosis for his left.

Now Archie’s confidence has soared, as he can walk more freely and for longer without his crutches when he’s out and about. He stands taller, has changed his posture and no longer has to rely on something to lean on when he stops.

He said: “In my previous orthoses, or when I wasn’t wearing them, I walked from my hips with my knees bent and I would always feel very

aware I looked different to other people. But now I have my new orthoses I feel like if I was wearing jeans over them no one would know.

I would just be a regular young guy.”

“But the orthoses are so discreet, and sleek and lightweight. I’m actually pretty proud of them. I walked from my car to my physio without crutches and in my shorts and I didn’t care. I would have hidden them in the past but I feel so much more confident.”

For more information about Ottobock’s range of products and services visit www.ottobock.co.uk

“Motability helped fund my driving lessons; being able to drive has given me my freedom back.”

Bryany

Making life easier for disabled people

“Our Motability Scheme car helps us get to and from school and the hospital with ease.”

Marcelle, Samuel’s mum

The Motability Scheme enables disabled people to lease a new car, scooter Who can join the or powered wheelchair without the worry of owning Motability Scheme?

You may be eligible to join the and running one.

What’s included on the Motability Scheme?

Insurance Breakdown assistance Servicing and repairs Tyres and battery replacement

Scheme if you receive one of the following:

• Higher Rate Mobility Component of Disability Living Allowance (DLA).

• Enhanced Rate of the Mobility Component of Personal Independence Payment (PIP).

• War Pensioners’ Mobility Supplement (WPMS).

• Armed Forces Independence Payment (AFIP).

Charitable Grants Motability may be able to provide a charitable grant towards the cost of a Scheme vehicle, adaptations for a Scheme vehicle or driving lessons.

For more information, visit

motability.org.uk/charitable-grants Motability is a Registered Charity in England and Wales (No.299745) and is authorised and regulated by the Financial Conduct Authority (Reference No. 736309). The Motability Scheme is operated by Motability Operations Limited under contract to Motability. Motability Operations Limited is authorised and regulated by the Financial Conduct Authority (Reference No.735390).

Motability are attending Kidz to Adultz North Come and chat to us to find out more information about the Motability Scheme.

If you are unable to attend the Kidz to Adultz exhibition but would like an information pack, you can:

Freephone 0800 093 1000 or visit motability.co.uk/kidz

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