Kidz to Adultz Wales Newz WHAT’S INSIDE?
Charitable Funding Advice & Information Children’s Toileting Issues New Kidz Event for 2018 Financial Planning for Your Child Driving With a Disability And much more...
Kidz to Adultz Exhibitions supporting children and young adults up to 25 years with disabilities and additional needs, their families, carers and the professionals who support them Disabled Living Registered Charity number 224742
Disabled Living Supplier Directory The Directory has been created at the request of people who use Disabled Living as a resource, to identify companies or organisations who sell or provide equipment, products or services.
Visit our Directory to find the information you need! For more information please contact us on: 0161 607 8200 or info@disabledliving.co.uk 2
Welcome to Kidz to Adultz Wales Newz In July 2016, our charity, Disabled Living brought the Kidz to Adultz exhibitions to South Wales, providing a specialised event for children and young adults with disabilities and additional needs, their parents, relatives, carers and the professionals who support them. Unfortunately, this year it has not been possible to secure an accessible venue with onsite parking, capable of accommodating the anticipated number of visitors who have registered for future Kidz to Adultz events in South Wales. In order to ensure you are kept up to date and to keep up the momentum until we see you in 2018, we would like to share information with you through our Kidz to Adultz Wales Newz. We look forward to seeing you in 2018. Carmel and the Kidz Team
Features ● Help to Funding Equipment Page 6 ● Disabled Living Celebrating Working in Wales Page 9 ● Kidz to Adultz Wales & West 2018 Page 13 ● Changing Places in Wales Page 14 ● Toilet Training Children with Additional Needs Page 17
● Planning a Financially Secure Future for your Disabled Child Page 20 ● Helping Children Move: Hints and Tips Page 24 ● Flying with a Disability Page 26 And Much More.... 3
My Grandchild an everything for all aspects of disabilities. Equipment and aids that I had never heard about, never mind ever seen. It really brought tears to my eyes, that all this was out there but you never hear about. Everybody was so friendly and supportive, gave advice and if they didn't know the answer to my numerous questions, they pointed me in the right direction of somebody who might be able to help.
Hello, my name is Barbara and I am a Grandma. Nothing unusual in that I hear you say. However, I am Grandma to three beautiful grandchildren, one of whom is called Rebecca, she is twelve years old and has three rare brain conditions. Great Ormond Street hospital have carried out genetic testing and so far they have no other child on their database with the same three conditions. Rebecca began to miss her developmental milestones and it was then my daughter, Liz, realised that all was not well. The shock for my daughter on learning the seriousness of Rebecca’s condition had a huge impact on her life as well as the rest of the immediate family. Where do you start to help and support Liz and Rebecca as Grandparents? What help is out there for Rebecca? Where do you find what will help Rebecca have a better quality of life? How do you help as Grandparents without interfering but don't know
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where to start. These were the questions that kept cropping up time and time again. Whilst searching for advice and support I came across, online, Kidz to Adultz Exhibitions, a free event run by Disabled Living, a charity based in Manchester. They held these exhibitions in various parts of the country and I was pleased to see that one was held every June in Reading, not too far from our home. A few years ago I decided to make a beeline for Reading armed with sandwiches and a flask, as you do. What greeted me was an eye opener that I have never forgotten. The exhibition was amazing, something I never expected. I was greeted on arrival, given a guide book and off I set. There were approximately 130 stands with equipment which covered just about
Various Reps I met gave me their literature and contact details if I needed further advice. I have followed this up as we have acquired some equipment for Rebecca both at her own house and for when Rebecca stays with us during school holidays. I was so busy that first visit that I forgot to eat my sandwiches!
nd Me! Last year, Kidz to Adultz went to Cardiff for the first time. As my daughter and Rebecca lived near Cardiff I took them there. Liz had never been to Reading so didn't know what to expect. She was delighted to meet everyone and asked even more questions than me, if that is possible. Liz came away with bags full of information not to mention a few free pens! Many contacts were made and the chance to meet other parents of children with special needs was a particular highlight for her. During the Cardiff visit I filled out a prize draw entry form. I never thought much about it again, until an envelope popped through the letterbox with a Buckingham Palace crest. My first thought was, I didn't realise I was 100 all
ready! I had won a day out at Windsor Castle. My husband and I took Rebecca and had an amazing day. Rebecca is non verbal and wheelchair dependant so we wondered how she would react. I can not praise the staff highly enough, they went out of their way to make Rebecca’s day special. She looked at all the beautiful pictures and furniture, but what she found very funny for some reason was the hall full of suits of armour! Rebecca is a treasure who never ceases to amaze us with her personality and laughter. When I go back to Kidz to Adultz South now I see different people I know
who say to me ‘ah…!, yes Rebecca’, they have remembered her. Although not able to speak, Rebecca certainly lets you know what she wants and has cleverly managed to wind her Grandad around her little finger, something I have never managed to do in 30 plus years! I have learned through visiting the Exhibitions that there is a lot of help and advice out there which gives me hope for the future but especially for Rebecca as she gets older. Barbara
Do you know FUNDING is available?... As cuts continue to be made to statutory sector budgets, funding is a major concern. Families and carers are finding it increasingly difficult to access grants for those crucial pieces of equipment for children and young people with a disability. Many people are not aware of the financial help available. There are a wide range of organisations providing funding for equipment, adaptations, respite care and much more...
Family Fund are the UK’s largest provider of grants to lowincome families raising disabled and seriously ill children and young people.
The Boparan Charitable Trust a national children's charity helping those with disabilities, life limiting conditions or in extreme poverty.
Caudwell Children can offer support for services, equipment, treatment and therapies for disabled children and their families. Caudwell Children also run an Enable Sport programme for talented disabled athletes and Destination Dreams holiday for children fighting life threatening conditions.
The Sequal Trust National charity which fundraises to provide communication aids to people of all ages, with severe speech or movement or learning difficulties, on a permanent life long loan basis.
Newlife The Charity for Disabled Children can offer equipment grants and equipment loans to those facing lengthy delays for assessments, provision refusal and budget failings.
Cerebra offer a grant scheme that will fund up to 80% of the cost of equipment and services to help make life easier and more enjoyable for children with neurological conditions.
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How we can help you! Disabled Living is 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. Equipz—The team comprise occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses, continence specialists who together with knowledgeable information co-ordinators offer practical solutions to what may seem like unmanageable problems. The staff, respond to enquiries throughout the UK, primarily via our helpline and website, with some people opting to make an appointment 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
Kidz to Adultz—Disabled Living 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, offering a ’One Stop Shop’ for equipment products and services to enhance the quality of life. Besides our event in Wales we also arrange Kidz to Adultz exhibitions in Manchester, Coventry, Farnborough and Edinburgh.
Training—Disabled Living provides 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 for more detailed information on the courses we provide please visit the Disabled Living website.
www.disabledliving.co.uk 8
0161 607 8200
Disabled Living Celebrating 120 Years of Providing Services. The People of Wales played an important role in Disabled Living’s Heritage In 1949 our charity, known then as the ‘Cripples Help Society’ purchased a home, ‘Tan-Y-Bryn’ in Abergele, where people with disabilities could go for a two week holiday. In 1952 the charity was providing convalescent and holiday home services for children with disabilities at ‘White Heather’ in Old Colwyn. Local people were very involved in supporting our charity to ensure the children and adults who came to our homes had an enjoyable and memorable experience.
Tan-Y-Bryn, Abergele This year, the charity now named Disabled Living is celebrating 120 years of providing services. The services we provided in Wales were integral to our heritage. Disabled Living has been awarded a Heritage Lottery Fund Grant to develop a number of projects, one of which will be to organise an exhibition in North Wales at the beginning of 2018 to display photographs of yesteryear, talk to people from the local community about their memories and help us to increase our archive material. White Heather, Old Colwyn
We would be delighted to hear from anybody who has memories of ‘Tan-Y-Bryn’ or ‘White Heather’. Take a look at the history page on our website. Prestatyn Holiday Outing
Drop me an email or give me a ring—I look forward to hearing from you! Natasha Bolger natasha.bolger@disabledliving.co.uk 0161 214 5959 9
Poo Problems in Children Constipation, soiling, smearing and refusing to poo on the toilet are common problems for children and young people, particularly when there are also additional needs. Babies may open their bowels several times a day although breast-fed babies over the age of six weeks may only open their bowels every few days. As children are weaned the frequency of bowel actions may reduce and by the time children are three years old they would normally be expected to pass a soft poo three times a day to three times a week. Children over a year in age would not usually be expected to open their bowels during the night.
If a child is passing small hard poos (like rabbit droppings), very large poos, if they are not opening their bowels for more than three days at a time, or if they are going more than three times a day, if the poos appear to hurt when passed, if they are hiding when they poo or appear to be trying to hard to push poo out or to hold the poo in, if the poos are very smelly, or if they have tummy aches then they may be constipated. If you are concerned about your child’s bowels you should ask your child’s GP, health visitor, or school nurse for an assessment and treatment.
Treatment for constipation involves giving medicines called laxatives. It is important that you give the laxatives as recommended and monitor your child’s progress. Many children pass loose poos when they start laxatives and this may continue for a few days, particularly if you need to give them increasing doses to clear out any backlog of poo. Many children need the dose of laxative adjusted, or they may need more than one type of laxative. It is important that you discuss any concerns with their health care professional. You should continue to give the laxatives, even when they are doing well – most children need to have the dose reduced over a long period of time, rather than stopping them suddenly. Soiling is nearly always caused by constipation. When constipation is successfully treated soiling often resolves. Rarely soiling may be due to a behavioural problem. It is important to remember that children do not behave ways to upset adults, but behave in a way that they think will solve a problem for them. If it is thought that soiling is a behaviour problem, then the cause should be considered. Does the child know what is expected? Are they stressed? Are they getting attention as a result of soiling? The next thing to think about is the response they are receiving. A calm, quiet, consistent approach that gives minimum feedback for behaviour that is not wanted and rewards for the right behaviour can all help. Smearing of poo is another difficult problem for families. It can also be caused by a lack of understanding of what is expected; it can be an attempt to
get attention, or a desire for sensory stimulation. Again the best approach is to try and understand the cause from the child’s perspective and to address this. More appropriate sensory stimulation, such as playing with dough or custard, finger painting may be helpful. Limiting access to the nappy area with clothing may prevent it from happening.
Children might refuse to poo on the toilet because they are not used to sitting down to poo, they may not feel safe on the toilet, they may be anxious about the poo falling away from them, they may be bothered about the ‘splash’ of the poo, or worried about the flush. They may be upset that something they have produced is going to be washed away. Ensuring your child feels safe and comfortable on the toilet is important. If they have an occupational therapist, you could ask them for an assessment of your child’s toileting needs. Getting them used to sitting and using social stories and picture communications as well as appropriate rewards may all help.
and Young People If you are struggling with poo problems then discuss this with your child’s health care professional. Further information is available on the Bladder and Bowel UK website at www.bladderandboweluk.co.uk where we have a useful booklet ‘Talking about Constipation’ which
you can download. For further information and advice please contact the team on the helpline— 0161 607 8219. Davina Richardson, Children’s Continence Advisor Bladder and Bowel UK
Bladder and Bowel UK is working in partnership with Bullen Healthcare to offer a home delivery service Bladder and Bowel UK is a service of Disabled Living and provides support for adults, children and young people with bladder and bowel problems. We are working in partnership with Bullen Healthcare to offer people a home delivery service for stoma, urology and wound care appliances. Bullen Healthcare can also provide medication prescriptions for customers using their home care delivery service. The Bullen Healthcare team take care of everything including dealing with the GP and keeping you informed throughout. In addition, customers will receive Complimentary items.
Available free with every order
Available on request or with your first order:
Wet wipes Dry wipes Scentees
Radar key Mattress protector Mirror
Sealaway disposable bags Bed pads Hand sanitiser Freephone: 0800 0315411 Email: bbuk@bullens.com
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Kidz to Adultz Wales & West Thursday 5th July 2018 Thornbury Leisure Centre, Thornbury, Bristol, BS35 3JB (10 minutes from the Severn—Wye Bridge)
New Venue for 2018 A FREE event for children and young adults up to 25 years with disabilities and additional needs, their families, carers and the professionals who support them.
NEW VENUE
16th November 2017 Manchester
15th March 2018 Coventry
17th May 2018 Farnborough
To be announced Edinburgh
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Changing Pla Pili Palas Nature World Penmynydd Road Menai Bridge Anglesey LL59 5RP The Esplanade Hotel The Promenade Llandudno LL30 2LL Llandudno Station Augusta Street Llandudno LL30 2AF Clwyd Special Riding Centre Ltd Llanfyndd Nr Wrexham Flintshire LL11 5HN Henblas Street Toilets Henblas Street Wrexham LL13 8AD Eagles Meadow Shopping Centre Eagles Meadow Shopping Centre Wrexham LL13 8DG Llangollen Pavilion (inside venue) Abbey Road Llangollen LL20 8SW Llangollen Pavilion (outside venue) Abbey Road Llangollen LL20 8SW
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Corris Craft Centre Machynlleth Powys SY20 9RF Welsh Assembly Government Rhodfa Padarn Aberystwyth SY23 3UR Ceredigion County Council Canolfan Rheidol Rhodfa Padarn Aberystwyth SY23 3UE Folly Farm Adventure Park & Zoo Begelly Kilgetty Pembrokeshire SA68 0XA Cartrefi Cymru 18 Water Street Carmarthen SA31 1PY Parc Y Bocs Farm Shop and Cafe Carmarthen Road Kidwelly Camarthenshire SA17 5AB Garwnant Visitor Centre Coed Taf Fawr Merthyr Tydfil CF48 2HU Friars Walk Shopping Centre John Frost Square Newport NP20 1EA
Redhouse Old Town Hall Old Town Hall High Street Merthyr Tydfil CF47 8AE Ebbw Vale Sports Centre Lime Avenue Ebbw Vale Gwent NP23 6GL Victoria Gardens Neath SA11 3BH Sarn Park Welcome Break Motorway Services Sarn Park Bridgend Glamorgan CF32 9SY
aces in Wales LC Leisure Centre Oystermouth Road Swansea SA1 3ST Swansea Railway Station High Street Swansea SA1 1NU 360 Beach and Watersports Centre Mumbles Road Swansea SA2 0AY Aberavon Leisure and Fitness Centre Aberavon Seafront Port Talbot SA12 6QP
Swansea City Bus Station Plymouth Street Swansea SA1 3AR Swansea Civic Centre Oystermouth Road Swansea SA1 3SN National Waterfront Museum Oystermouth Road Maritime Quarter Swansea SA1 3RD Brangwyn Hall The Guildhall Swansea SA1 4PE
Port Talbot Parkway Railway Station Port Talbot Parkway Port Talbot West Glamorgan SA13 1UR University Hospital Wales Heath Park Cardiff CF71 7TN Cowbridge Leisure Centre The Broadshoard Cowbridge CF71 7DA Cardiff Airport Vale Of Glamorgan Cardiff CF62 3BD Sbectwrn Community Centre Bwlch Road, Fairwater Cardiff CF5 3EF
St Fagans National History Museum St. Fagans Cardiff CE5 6XB St Fagans Pavillion Cardiff South Wales CF5 6XB St Fagan's Museum Visitor Centre Cardiff South Wales CF5 6XB Wales Millennium Centre Bute Place Cardiff Bay CF10 5AL National Assembly for Wales Cardiff Bay Cardiff CF99 1NA Principality Stadium Westgate Street Cardiff CF10 1NS St David’s Dewi Sant 11 Bridge Street Cardiff CF10 2EF National Museum Cardiff Cathays Park Cardiff CF10 3NP Penarth Leisure Centre Andrew Road Penarth CF64 2NS
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A Step by Step Approach to Toilet Training Children with Additional Needs! Introduction Becoming toilet trained is a milestone all parents strive for and for some parents of children with learning difficulties this milestone can seem unobtainable. However clinical experience has taught us that for many of these children becoming toilet trained is an achievable goal.
the lack of understanding and poor social awareness that results in delayed toilet training rather than an underlying problem within the bladder or bowel.
be socially aware and motivated before toilet training commences, the child should undergo an assessment between the ages of 2-3 years and an appropriate supportive toilet skill development programme put in place. Toilet training is a skill that can be broken into a number of steps and addressing each step at a time makes the whole process a lot easier and more manageable for the family. Programmes such as ‘One step at a time’ have been used successfully with children with a whole range of learning difficulties with each step “Toilet training is a skill that bringing the child closer to the can be broken into a number goal of being toilet trained.
Identifying ‘readiness’ In the 1960’s there was a focus towards a very ‘child centred’ approach when the family would wait to start toilet training until the child showed an interest or appeared ready to be toilet trained. That approach worked very well at a time when children of steps and addressing each step at a time makes the wore cloth nappies. The mother whole process a lot easier was able to identify quite early on when the child was and more manageable for the developing bladder maturity, for family.” example with increasing time between wees and being dry after naps. Also the child had the It is important therefore to put opportunity to learn to recognise delayed acquisition of bladder the consequence of full bladder and bowel control in the same signals by feeling very wet! context as other developmental These factors often were the delays such as delayed speech ‘triggers’ that led to the initiation or delayed walking. In these of toilet training. circumstances we would never Unfortunately that ‘wait until the delay referral to a speech and child is ready’ approach still language therapist or persists today despite the fact physiotherapist because we did that most children are in not think the child was ‘ready’ to disposable nappies. This means talk or walk. Yet for many that many of the factors that children with learning difficulties would trigger the family to start the introduction of support toilet training are no longer programmes to facilitate toilet evident leaving the family unclear training are either never initiated when to start training. Becoming or they are delayed in the toilet trained is the interaction of mistaken belief the child is not two main processes – ‘ready’. physiological maturation of the bladder and bowel and social and Introducing toilet training cultural awareness. For children So rather than waiting for the with learning difficulties, it is often child with learning difficulties to
A step by step approach to toilet training Step 1: setting the scene This step is mainly about introducing and encouraging changes to the routine of nappy changing which enables the child to learn new skills and start on the path towards toilet training. It involves establishing healthy habits with eating and drinking and sitting on the potty or toilet at regular intervals during the day. Changing the child in the bathroom enables them to be more aware of the connection between wees and poos and the toilet. For those children who are able to stand unsupported we also suggest the child is changed standing up as that way they can get more involved with the process such as pulling pants up and down and learning about wiping their own bottom. Learning about wet and dry is also introduced at this stage.
Step 2: developing the skills needed This step focuses on the skills required to use the toilet including sitting on the toilet, pulling pants up and down and knowing what the toilet is for including flushing and washing and drying hands. How to use rewards and praise appropriately is an important factor. It is important that the reward is given immediately with specific praise e.g. ‘Good boy for sitting on the toilet!’ So the child knows exactly what the reward is for, the ‘reward’ can gradually be faded out over a period of time while still continuing with the verbal praise. At the end of this step the child should be able to happily sitting on the toilet (with or without support) for up to 2 minutes, although at this stage we are not really expecting the child to use the toilet as that will hopefully be achieved in step 4. Toilet toys can help encourage the child to sit and stay on the toilet such as a bubbles or squeeze / tactile toys. At the end of this step the child should be able to happily sitting on the toilet (with or without support) for up to 2 minutes, although at this stage we are not really expecting the child to use the toilet as that will hopefully be achieved in step 4.
“Toilet toys can help encourage the child to sit and stay on the toilet such as a bubbles or squeeze / tactile toys”
nappy beginning with the first nappy change of the day and checking hourly and keeping a note of wet or dryness will help give an idea of how often the child wees and how long they can stay dry for.
At this stage once we have identified the child is able to stay dry for increasing periods we would be looking at moving towards the child coming out of disposable products into washable trainer pants or normal underwear with a small pad. Before the child can move on to that next step we would suggest they need to be able to stay dry for at least 11/2 hours if not longer and have no underlying problem with their bowels such as constipation. (By the age of 3 years we would expect most children to wee between 4-7 times per day – if that is not achieved by the age of 5 years we would suggest further assessment). Step 4: using the toilet for wee and poo
toilet to wee and poo, bottom wiping and using unfamiliar toilets. Simple advice regarding using the ‘gastro colic reflex’ (this is when movement along the bowel is stimulated after eating) to help facilitate bowel evacuations on the potty/toilet, may be helpful also the fact that most children need to wee when they wake in the morning or after a nap and within an hour of drinking a significant amount will all help when deciding the best times to sit the child on the potty/toilet. Toilet training is best started when the child is not experiencing any other change, such as a new sibling or moving house and introduced in a matter of fact way as a normal every day activity. Having an open door policy in the bathroom will allow the child to see other members of the family using the toilet and will be seen as something everyone does. Discussion The time it takes and the overall success with toilet training will depend very much on the child’s individual ability so will vary from child to child. Also there will be some children who will always require additional help or support to use the toilet or need the occasional prompt to go to the toilet, particularly if they are busy or distracted. Once the toilet training starts it is important that everyone involved with the child both at home and school is aware of the programme so a consistent approach can be maintained. June Rogers MBE BBUK Paediatric Continence Specialist
Step 3: raising awareness This step involves identifying the child’s habits - such as how long they can stay dry for and if there is a regular time when they have their bowels opened. Putting folded pieces of kitchen roll in the
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At this stage we would expect the child to cooperate when taken to the toilet/potty and happily sit on and attempt to pull their pants up and down if physically able. The skills introduced and developed at this stage include using the
Further information can be found on the Bladder and Bowel website. If you would like specific advice please contact the helpline on 0161 607 8200.
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Have you thought about driving with a disability? Children who are in receipt of the higher rate mobility component of PIPs/DLA can apply for a Provisional licence at the age of 16 years. Being independently mobile increases chances of further education and career prospects and it is vitally important to have the correct information before beginning learning to drive. Our service offers impartial driver and passenger assessments that aim to provide a long term mobility solution. All assessments are conducted by suitably qualified members of staff and are treated confidentially. If you are experiencing difficulties with access to and from a vehicle, our centres have a range of equipment that may reduce or eliminate the physical effort involved during transfers. We explore safe transfers and travelling needs, vehicle suitability and equipment options and stowage. Parents/Carers of young children who find that as their child develops they find it difficult to put them into a vehicle resulting in health problems for the carer may find the advice we provide invaluable. Here are some of the reasons you may need to contact us: You are 16 years of age or older and want to know if physically you are able to control a vehicle or if not what adaptations are required to enable you to drive in safety.
You are struggling to put your growing child into a vehicle and need help to stow their wheelchair and equipment.
You have a child/young adult who keep escaping from their seat belt.
You have learning difficulties – during the assessment drive we explore concentration, perceptual and decision making.
THE WALES MOBILITY & DRIVING ASSESSMENT SERVICE Rookwood Hospital, Llandaff, Cardiff CF5 2YN 029 20 555130 or Disability Resource Centre, Glan Clwyd Hospital LL18 5UJ 01745 584858 Registered Charity: 1056588
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An Overview of Help What are we trying to achieve?
..to identify the best ways to help the child move… ..best for the child and also best for the helper For example: Child might want… to get onto the trampoline as fast as possible to spend time on the floor with my friends to be helped by a single person and not two to be able to keep standing
Using a practical risk assessment approach: Child:
Helper might want…
to get the child ready for school in time to maintain the child’s weight-bearing skills for the child to be safe and comfortable to avoid self-injury
What can this child do now and what are they likely to be able to do in the future? Moving into sitting Moving into standing Crawling/stepping/walking Moving onto and off the floor How old is this child? How heavy is this child and how tall? How co-operative are they and what can we do to help encourage co-operation? What medical information is relevant..pain, displaced hips, contractures, attachments etc
What about the environment?
Space available Equipment available and equipment obtainable Access Other people
What about the helpers?
Are they family or employees How many are there
Scenario: Molly is a 4 year old child with multiple disabilities. She is bright and alert and is able to bottom shuffle. Molly has just started school, attending in her manual wheelchair. Mollie really likes being on the floor and in the sandpit, and will also need to access a changing bed for personal care. She weighs 18kg. School is mainstream, without any equipment apart from a changing bed, and no experience of helping children move. Mum is very against the idea of Molly being hoisted. An assessment of Molly used a transfer board to enable her to move between the wheelchair and her hilow class chair and also on and off the changing table and this worked well, with the helper needing to give minimal contact assistance only. The helper needed to kneel or sit on a wheelie stool during the move, to maintain a good posture. Molly is too heavy to be lifted onto and off the floor and not yet able to shuffle out of her hi-low chair to the floor. A Mangar Elk aid was tested to aid her move from chair to floor and back, and Molly was able to use the transfer board to get on and off. Molly was especially pleased that this method could be used to enable her to get into and out of the sandpit.
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ping Children Move Roll away to avoid overreaching Offset base allows weight transfer
H I N T S & T I P S
Offset kneeling base helps posture
Slide rather than lift
Manual Lifting Sling
Elizabeth Hallows MCSP SRP LPC (Back Care Management) elizabeth@elizabethhallows.co.uk www.elizabethhallows.co.uk
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Flying with a Disability! get my child to the toilet?” We’d suggest that if you are new to flying with your child that you take advice from your GP or consultant to check that they are ‘fit to fly’.
The year on year growth of numbers of people flying is staggering. 235 million people flew in and out of the UK last year and 58% of the public travelled by air. However, only 36% of people with a disability took a flight. This means that although 70,000 passengers with restricted mobility require assistance each month at Heathrow airport alone, it seems that there are still barriers – or perceived barriers – to people with disabilities flying.
Then, an assessment at a mobility centre that offers the TryB4uFly service would be the right step to gaining confidence and advice about what you will need and how you navigate through the airport and aircraft. You should then contact the airline you’re planning on flying with, and discuss your requirements with them, as they will want to ensure that you will be comfortable and stable on your flight. The more information you can provide, the better.
Clearly people with disabilities can and do travel by air, but for those that haven’t, or for those families who have a disabled child, it can be something that can cause apprehension, given you can’t readily board an aircraft to check you’ll be okay. This is why Queen Elizabeth’s Foundation for Disabled People started its ‘TryB4uFly’ assessment service, to give people the chance to take their time and try seating and transfer options in a realistic aircraft setting, and help them decide if or how they can make their flight. The service also provides advice on, and hire of, equipment for use in the cabin. Some people choose not to fly after the assessments – but this is actually a positive outcome too, because it prevents a difficult or painful experience. Common questions that we’re asked include: “How do I board the aircraft, how can I make my child comfortable, can I take my child’s wheelchair, and how do I
Although some flights will have a fixed destination in mind, such as to visit family or have medical treatment, if you’re thinking about taking a holiday without a set location in mind, it’s worth finding out more about the country and considering its accessibility levels and laws, thinking about any stopovers too and the impact on your journey. When preparing for the flight, it’s useful to know that if you’re flying from any European airport, you can take two items of mobility equipment for free. If an assessment shows that specialist seating support is required, and is not provided by the airline, you
can consider hiring it just for the flight. Another common question is ‘can I take my own wheelchair?’ This is something you need to check with the airline. They will ask you for the make and model, plus exact dimensions and weight. Your child cannot remain in their wheelchair on the aircraft, but will use a transfer chair or you can lift your child and walk down the narrow cabin aisle. Transferring in the aircraft is exactly the sort of thing that an assessment will be able to help you prepare for and gain experience with. The narrow on-board wheelchairs can be used by cabin crew to assist your child get to the toilet. Bear in mind the very compact size of cabin toilets and strategies for managing continence. Medication and liquid feed is also important to consider. If you’re taking over 100ml you’ll need to bring a medical certificate or doctor’s letter. There’s no limit to the amount you can take in the cabin. Take copies of any prescriptions with you and also consider whether to have liquid feed delivered at your destination rather than taking it all with you. Graham Race - Tryb4uFly To find out more about Tryb4uFly assessments visit tryb4ufly.org.uk or email mobility@qef.org.uk
Disabled Living’s Travel Tips! Chris Cammis, Disabled Living’s Disability Trainer and Advisor has been a wheelchair user since childhood. After graduating from The University of Manchester, he was a secondary schoolteacher for 28 years. He now delivers Disability Awareness training and conducts Access Audits all over the UK. He has always travelled widely and has accumulated a lifetime’s experience in this environment which he would like to share with you. Have a read of Chris’ blogs via the links below
Finding the Right Hotel for You and Your Disability
How to Make the Most of Your Cruise Experience with Your Disability
How This Year’s Bluedot Festival Inspired and Entertained 27
Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome. So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we find out together makes life better. It opens doors to discovering the world. It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together. Cerebra have many guides covering different topics that can be accessed on our website. One of our newest guides is regarding sleep. Cerebra have their own sleep service, which includes a team of 5 sleep practitioners. One of our sleep practitioners delivered a presentation titled ‘understanding and managing sleep’ at the recent Kids to Adultz South event in Reading. We have delivered our presentation across all the Kidz events over the last 12 years and have always had great attendance and positive feedback. The presentation focuses on the 4 main areas of sleep that we come across, these are: Difficulty settling, Night Waking, Difficulty sleeping alone and Early rising. Our presentation then goes on to give strategies for managing these sleep issues. Some of our top tips include: Have a regular, set bedtime routine, including a set wake up time in the morning Have a calm bedroom environment that is minimal in terms of toys/clutter. Avoid the use of electronics for an hour before bedtime Use black out blinds to help with difficulty settling and early rising. Make sure the bedroom is an adequate temperature-around 19 degrees. Use rewards to motivate your child if appropriate Try to avoid rewarding night waking behaviours by limiting your communication and interaction Use a clock or something visual to indicate to your child when it is an acceptable time to get up in the morning. Try to have realistic expectations so that you don’t set yourself up for failure Be consistent The strategies we work with tend to be of a behavioural nature however sleep problems can also be related to pain or anxiety for example. We also have guides covering these topics on our website and these can be downloaded free of charge as PDF files.
www.cerebra.org.uk Our presentation can be delivered across the country and is free of charge to parents. We also offer 1 day workshops and can give one to one advice over the telephone or at a sleep clinic. If you are interested in any of the services we offer please contact sleep@cerebra.org.uk or complete the referral form on our website.
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The Importance of Disseminating Information to Your Service Users
This is a blog is written by Jayne Watson, one of our Occupational Therapists. Disabled Living host 5 of the largest exhibitions for kids and adults with disabilities. The exhibitions are a great way of finding information on equipment relevant for the individual to remain as independent as possible throughout the different stages of their lives. Not only do we look at equipment, but we also have a wide variety of funding organisations, mobility vehicles companies, solicitors, employment agencies, colleges, and charitable organisations. There are also fun activities to occupy the children during the day, with a good variety of catering services available if feeling hungry. These events are also a great way for professionals to network with other professionals and update their continuing professional development (CPD); presentations cover a wide variety of topics. These seminars are also open to families and
carers of children with disabilities and special needs. Entry to these events is free on a first come, first served basis.
Now here is the gripe A professional reported to one of my colleagues that they don’t disseminate information because they can’t provide a specific piece of equipment, however I can’t specify how important it is to inform families of these events as it gives them the choice on whether to attend or not. For years now I have been part of the Kidz to Adultz exhibitions, however part of my role working for a charity is that we receive numerous enquiries from parents all over the country in search of equipment for their disabled children, as well as funding and various other requests. On asking do you have any professionals involved it appears that the majority depending on their locality who attend our events are not informed by professionals, and that the tickets clearly state that it is for parents and the professionals working with them.
I feel that families are missing out on vital opportunities to provide their children with the best quality of life knowing there is a wealth of information, choice and support that their children deserve. In addition, it improves the health and well-being of all families. I find it difficult to imagine that all those professionals who are involved clearly don’t disseminate this information. Informing families will reduce an immense amount of stress knowing that they are not alone and that there is support out there.
Why not share this information? For all those professionals who read this blog and attend our Kidz to Adultz events please kindly share this information down to your service users or request extra tickets for dissemination. Families are missing out on so much information when they don’t need to.
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