Darcy’s on the move!

Darcy riding her trike

Darcy riding her trike

A little girl will be having lots of fun this summer on her new trike, funded by Cerebra.

Darcy has a coloboma (a gap in the structure of the eye) that has left her partially blind. She also lives with painful spasms, epilepsy and developmental delay.

Her conditions make day to day life difficult but it doesn’t slow Darcy down and she enviously watched her sisters playing on their bikes.

Darcy’s mum couldn’t afford the specialist trike that Darcy needed, so applied to Cerebra for a grant to help with the cost. Her mum told us:

“The trike has given Darcy the chance to keep up with her sisters and she loves it. She’s like the queen waving at everyone as she passes! She has taken it to play group so she can join in when they do outside play then rides home on it. Thank you so much – it means the world to us that she can enjoy an activity safely without seizures and balance being an issue”.

The support given to Darcy and her family by Cerebra is all thanks to the money raised by the public. If you’d like to help us to keep making a positive difference, head over to our fundraising page.

Mud run for charity

Successful mud runners receive their medals

Muddy but happy!

On Sunday the 18th of May Caroline Davies Glanville and friends tackled the Pontargothi Mud Run to raise money for children’s charity Cerebra.

Caroline and her group faced a gruelling obstacle course in the May sunshine, jumping fences, navigating a course of tires, slogging knee-deep in swampy ponds, leaping gates and fences and trudging between trees.

The track saw Caroline and hundreds of other runners emerge muddy but accomplished at the end, ready to have their photos taken after proving themselves brave enough to battle the challenge.

The Pontargothi Mud Run is just one event organised by Back 2 the Trenches, who offer other courses throughout the UK. You can find out more on their website: www.back2thetrenches.co.uk.

You don’t have to submerge yourself in muddy waters to raise money for Cerebra – you can do anything to help us make a positive difference! Contact our Community Fundraising Team on 01267 244222.

Research Update – July 2014

Typing on a keyboard
A selection of recent news, research, reports and events

In the news

Cooling babies ‘helps reduce longer-term brain damage’
The BBC reports on a study that was published in the New England Journal of Medicine that suggests that cooling babies deprived of oxygen at birth improves their chances of growing up without disabilities such as cerebral palsy.

Possible pesticide link to autistic spectrum disorders
NHS Choices takes a look at the evidence behind a Mail Online article that reports “Pregnant women who live near fields sprayed with pesticides can run more than three times the risk of having a child with autism,”.

Male hormones in the womb linked to autism
NHS Choices examines the research evidence behind a Daily Telegraph article that states “Boys who develop autism may be exposed to higher levels of hormones…in the womb”.

Why children with autism often fall victim to bullies
This article in The Conversation, discusses the growing body of research that indicates that young people on the autism spectrum are considerably more vulnerable to bullying than their peers.

ADHD drug review call in Wales by Psychologists
BBC News Wales highlights a call by psychologists to review the drug treatment of children with ADHD in Wales, following a 57% rise in prescriptions for the most common drug to treat attention deficit hyperactivity disorder (ADHD) between 2007 and 2013.

Foundation for people with learning disabilities – An ordinary life
In a project led by the Foundation for People with Learning Disabilities, a number of technology-dependent children with complex health needs and their families from across the country who were benefitting from person-centred approaches were interviewed. These stories of the people were written up into a booklet for families and professionals called ‘An Ordinary Life’ and includes information on how to overcome some of the barriers to leading a full life.

More practical research needed on autism
Following the publication of a report by the institute of Education and Research Autism, asking ‘what should autism research focus upon?‘, the Guardian writes an article promoting the call for more research that influences autism services and societal issues.

New app relieved patients’ fear of the dentist
Scientists from Dundee and St Andrews Universities, NHS Tayside and Capability Scotland have developed a speech app ‘Stories at the Dentist’ to help people with learning or communication disabilities prepare for a visit to the dentist. This communication app helps patient deal with any anxiety or stress by helping them understand what to expect and get more involved in their care.

Research

Peninsula Cerebra Research Unit – Research terms
Are you sometimes confused by research terms and what they mean? Peninsula Cerebra Research Unit (PenCRU) lists some of the terms used in research and provide an explanation of each.

Gene mutation linked to distinct type of autism
NHS choices reports on a genetic study that found children with autism spectrum disorder (ASD) were more likely to have a mutation in a gene called CHD8 than children without the disorder. However, talk of a single autism gene is premature. This is relatively early stage research. The genetic test will need to be further tested and validated in large and diverse groups to ensure it accurately identifies people with ASD.

iPads may help kids with autism develop communication skills
Medical Xpress reports on a study published in the Journal of the American Academy of Child & Adolescent Psychiatry that has shown that children with autism who use computer tablets as part of their language and social communication treatments may develop better speaking skills.

Researchers at the University of California gave 61 children aged five to eight with autism spectrum disorder (ASD) access to an iPad as part of their treatment. They discovered that the tablet had a positive effect on the kids’ communication skills. They did however emphasise that the iPad is just a tool and that for it to work, the children must use it in conjunction with treatment.

Epilepsy research uncovers ‘On-Off switch’ for brain
Epilepsy Research UK reports that scientists in the US have found a possible new method of toggling a person’s consciousness on and off, opening the door for new approaches to treating epilepsy.

A team from George Washington University uncovered a means of using deep brain stimulation to instantly send a patient with epilepsy into unconsciousness, before bringing her back again through the same method. According to study findings published in the medical journal Epilepsy & Behavior, it is thought that this technique could be explored as a potential means of resetting or correcting the uncontrolled and destructive brain activity that occurs during an epileptic seizure.

Autism the most costly disorder in the UK
In June, the London School of Economics and Political Science (LSE), published research that shows that that autism costs the UK £32.1 billion per year, more than heart disease (£8bn), cancer (12bn) and stroke (5bn) combined. The LSE estimates that autism costs the country at least £32 billion per year in treatment, lost earnings, care and support for children and adults with autism. This has led Autism charities to call for a greater spend on autism research in the UK, because we spend just £4m per year on autism research, as compared to cancer (£590m) heart disease (£169m) or stroke (£32m).

Autism is not the only neurodevelopmental disorder on the rise
Sfari reports on a study published in May in European Child and Adolecent Psychiatry, found evidence that the growing prevalence of autism is no different from that of other neurodevelopmental disorders. The results were based on data collected from more than 4.5 million people in four countries,

Ocular and visual status among children in special schools in Wales: the burden of unrecognised visual impairment

The high prevalence of visual defects among children with special needs is well reported and guidelines for vision screening are in place. However, recent research has suggested that vision care for such children is neglected. This study set out to evaluate the current status of vision screening and eye care in special schools in Wales and concludes that pupils of special schools in Wales are not receiving equitable eye care since screening is patchy.

Bullying experiences among disabled children and young people in England: Evidence from two longitudinal studies
Bullying among school-aged children and adolescents is recognised as an important social problem, and the adverse consequences for victims are well-established. Despite growing interest in the profile of victims, there is limited evidence on the relationship with childhood disability. Results from two longitudinal studies by the Institute of Education reveal an independent association of disability with bullying, suggesting an overlooked mechanism contributing to negative long-term outcomes among disabled children.

Limited motor skills in early infancy may be a sign of autism
Research reported in Science Daily announces findings that provide evidence for reduced grasping and fine motor activity among six-month-old infants with an increased familial risk for autism spectrum disorders.

Reports

Looking for an ordinary life
This briefing summarises findings about some of the current issues affecting children and young people with complex health needs (who may also be using medical technology) and their families. It is based on a development project funded by the Department of Health Voluntary Sector Investment Programme and carried out by the Foundation for People with Learning Disabilities.

From the pond into the sea
The Care Quality Commission have published a report detailing the findings from a recent review showing that young people with complex health needs do not always receive the necessary care and support when they move on to adult care services.

Mental health and behaviour – information and tools for schools
This is advice from the Department for Education. All pupils will benefit from learning and developing in a well ordered school environment that fosters and rewards good behaviour and sanctions poor and disruptive behaviour. This behaviour and discipline in schools advice sets out the powers and duties for school staff and approaches they can adopt to manage behaviour in their schools.

Bullying and the law – a report for schools
The anti-bullying Alliance has produced a briefing that provides information about bullying and the law for schools and the wider children’s workforce in England. It is particularly written in relation to children and young people with special educational needs and / or disabilities (SEND) but can apply to all children and young people.

Events

National Autistic Society (NAS) – Girls on the autism spectrum

London – 9th October 2014 (Early bird rate if booked before 29th August)

The NAS is holding a conference aiming to further the discussion around diagnosis and support for girls and women with autism. Delegates can choose the seminars from three streams: health, social care and education. Dr Wenn Lawson (formerly Wendy Lawson) will be giving the keynote address at the conference on the unique challenges that women on the spectrum face and their unique strengths.

Cerebra Week 2014

Cerebra mascot with fundraisers

Sir E Bear joins in the fun

We are holding our annual Cerebra Week in Carmarthen from 21st to the 26th of July.

This year a team from the charity will be in Merlin’s Walk from 10am to 4pm each day and will be joined by 2420 squadron of the Whitland Air Cadets.

There’ll be lots of activities to keep the children entertained including a treasure hunt, find the teddies competition, face painting, guess the number of sweets in a jar and a chance to meet Cerebra mascot Sir E. Bear.

Every year the charity holds Cerebra Week in Carmarthen to raise awareness of the charity and the work we do. All the money raised goes towards improving the lives of children with neurological conditions throughout the UK.

So if you’re in the area please stop and show your support.

Raft Race to Raise Awareness

The raft being constructed

The CIC team building the raft

On Sunday 20th of July a team from children’s charity Cerebra will be taking to the waters of the river Towy to raise money for children with neurological conditions in the Carmarthen Raft Race.

Bran Bucca, Ben Jones, Jamie Pitman, Lee Herbert, Amy Jones and Amy Watler-Thomas from the charity’s fundraising department and Ross Head and Dan Cuthbertson from their Innovation Centre will be sailing on a raft put together by the Innovation team.

Cerebra’s Innovation Centre, based at the University of Wales Trinity St.David in Swansea, adapts and designs specialist equipment for families who wouldn’t normally be able to afford or even find what they need.

Some of the most successful designs of the CIC team in the past include trikes, writing slopes, trolley seats and, most recently, an adapted fish tank that meant a little boy with Down syndrome could safely watch his pet fish.

The Innovation Centre is just one of many services Cerebra provides, funded entirely by generous supporters. The charity also gives direct, ongoing help to families and funds important research into conditions.

The raft race will start at 12:45pm, with teams from all over competing as part of the annual river festival. Come along and support Cerebra – keep your fingers crossed for our team!

Transition – A Guide for Parents

 

Mother helping her daughter with school work

Mother and daughter studying together

The process of moving into adulthood should be an exciting and positive experience, but we know that it can be a very challenging time for disabled children and their families.

These families need the right level of support to continue during the transition from children’s services to adult services

Cerebra recently organised a series of successful seminars, delivered by the author of our Parent Guide on Transition to Adulthood, Camilla Parker, in order to help parents navigate the process.

At our most recent seminar in Bournemouth on 11 June, Camilla provided detailed information about the obligations of public authorities and encouraged delegates to contribute to the discussion and share their experiences of the transition process. Some of the issues discussed at the seminar included:

  •     how to ‘project manage’ the transition process
  •     key duties of public authorities
  •     decision-making and confidentiality issues
  •     ‘checklists’ to help prepare for transition in terms of education, social care and health.

We had some very positive feedback, with parents telling us how much they valued the opportunity to hear about other parents’ experiences and that they left the seminar feeling better equipped to deal with the transition process. To find out about Cerebra’s future seminars, conferences and other events, please have a look at our ‘What’s On’ section.

If you’d like some more information about the transition process, please have a look at our Parent Guide on Transition to Adulthood. The guide aims to help parents manage the transition from children’s services to adult services by providing an overview of the responsibilities of local authorities and NHS bodies, with a focus on education, social care, health and housing. The guide identifies the steps which should be taken by the various organisations at different stages of the process and includes checklists for parents, along with a downloadable table which sets out the key stages.

Our Guides are regularly reviewed and will be updated to reflect changes in the law – we’re always interested to hear your views about our publications and how you think they could be improved, so if you have any comments about the Guide, please get in touch with us.

Legal Entitlements Research Project Update

Booklet with reading glassesOur new on-line request form makes it easier for families to ask for help under our Legal Entitlements Research Project and to understand how the project can help them.

Cerebra’s Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurological condition and who need help to resolve a legal problem regarding access to health, social care or (to a more limited extent) education support services.

Law students at Cardiff University (under the supervision of qualified staff, firms of solicitors and other disability organisations) can offer legal support to families by providing a written opinion which explains the relevant law and a draft letter which parents can send to the relevant local authority or health body.

As well as providing practical assistance to families, the legal advice scheme also forms part of a wider research programme, under the direction of Professor Luke Clements as our Academic Chair.

The aim of the research programme is to understand why public bodies sometimes fail to discharge their legal duties and identify effective ways of overcoming these problems, so that we can better equip families to resolve problems with the statutory agencies, and enable statutory agencies to improve their decision-making processes and reduce the likelihood of similar problems arising in future.

We have recently developed a new on-line request form for parents who would like to be considered for support from the Project. We hope that the new form will help parents to frame their request and enable us to capture all the relevant information at an early stage. Please let us know if you have any comments or queries about using the online form.

We have also published Project Guidelines which explain how the scheme works in more detail and describe the type of legal problems we may be able to help with.

If you have a legal question about your child’s access to health, social care or education services, please have a look at the Project Guidelines for further details and complete the online request form available on our website.

Early Rising

Small girl waking her parents early in the morning.

Early rising is a common sleep problem

Our useful checklist gives tips for what you can do if your child is an early riser.
Early rising is a common sleep issue. Have you considered or are you already doing the following?

  • Is your child waking due to a noise?
  • Is the room dark? If not, do you have a black out blind?
  • Is your child going to bed at the same time every night?
  • Does your child have a way of knowing when it’s an acceptable time to get up? ( e.g. a clock of some kind)
  • If your child is over 3, have they stopped having naptime?
  • If your child is under 3, have you tried reducing naptime?
  • Are you unintentionally rewarding them when they get up early by letting them come into your bed or taking them downstairs?
  • Have you tried using a reward chart for your child staying in their room until an acceptable time?
  • Do you have anything in the child’s room that they can do quietly if there is no chance of them going back to sleep?
  • Have you minimised anything in the room that is noisy or overly stimulating for your child?
Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Breakages and Neurological Unpredictability Away from Home

Broken Vase on a wooden floor

Broken vase

We discuss accidental damage and insurance.

Replacing the Chinese vase or the carpet sweeper
Most people would recognise that a delicate and expensive item would be best kept out of reach of a child whose behaviour is predictably unpredictable, or who has difficulties with their perception of the space around them and/or coordination, making accidents more likely. Those providing care or receiving regular visits could be expected to recognise that. But what if a child damages an item that might still be of some cost but is in everyday use? In the case that prompted this article, it was an everyday item that was broken, and it was suggested by the facility that the family should pay for a replacement. The worry was not so much about that individual item, but the fact that, with the pattern of behaviour associated with the type of learning disability that the child has, this kind of accident could happen multiple times.

No-one was hurt in the incident, however from the point of view of the carers looking after the child at the time, this might have been a worry as well in terms of the child’s wellbeing.

There seems to be no single answer to this.

Many care arrangements include payment for providing the service to the child, which some would regard as covering eventualities. When I asked two or three organisations what they would do, one local authority and one private, both said that they would not charge children or parents for breakages. They have insurance to cover for expensive items, and pay the “excess”, or the cost of an item not reaching the excess, themselves. A local holiday facility however, in addition to that, takes a small deposit in advance of a week’s stay, refundable if there is no damage.

How could the facility be expected to replace the item? Accidental damage is usually defined as “unexpected and not deliberate”. There could be some argument about whether the action could have been predicted, but if there is no exclusion in the policy that applies to what has happened, there could be an insurance claim. Again, looking at how this sort of question is answered in the insurance world, there are several ways. This is one example, from a policy’s terms and conditions: “Your Equipment will be replaced with new or refurbished Equipment of a similar specification“ (Vodafone™) . Other approaches include awarding the “replacement value” of an item, which is the cost of replacing it in the state it was in before the damage. A lesser amount might be awarded if the policy refers to the cash value of the item, which takes depreciation into account. The broken item might be quite old (and unlike the Chinese vase, not appreciating in value with age). Obviously a replacement electrical item, for example, has to be working and safe. On the other hand if the item is not very old, is it still under guarantee?

Here is another example referring to respite care, albeit from another country: “Insurance cover for accidental damage or for insurable deliberate damage caused by a Child or Young Person referred from the Ministry is the obligation of the Caregivers [i.e. those with the duty of care at the time of the damage]. If the home is owned by the Provider, insurance is the obligation of the Provider.” (Shared Care, New Zealand). As far as I have found, this kind of approach is similar to that taken around the country here.

Suppose, though, a shared care arrangement is more informal, such as families helping each other out, and the broken item is not one that the providing family is going to make an insurance claim for but is not willing to write off. When is a child considered responsible for paying their own bills for breakages etc. and when could a parent be considered responsible, even if the child was not in their direct care at the time? Technically, a young person aged 16 or over is deemed able to manage some or all of their own financial affairs, unless their condition renders them unable to (for details, see the Cerebra parents’ guide, “Money Matters”, section on “Managing money”). In practice, parents may well step in to help out as a matter of goodwill whatever the age of the young person, particularly where they have a neurological condition.

Where a young person with a neurological condition is resident at a facility away from home, this could mean that at least some of their income comes from a care plan. If it is their own piece of equipment that has been broken, and they are asking their parents to help because they are expected to be able to manage their own money but do not have enough, this may signal that the care plan is insufficient to meet their needs. More details about this side of things can be found on a website by Law Professor Luke Clements. The family’s own insurance policies and memberships might also be worth checking to see if any of them cover for a member of the family’s equipment away from home or, if it comes to that, for access to legal advice. More informally, some families might be able to encourage the young person to save up, a small amount at a time, which could go towards the cost of any accidents but could also go towards an occasional treat otherwise.

Prevention

Prevention of incidents is, admittedly not always, possible using the obvious strategies of keeping vulnerable items out of reach, and providing knowledgeable supervision and training where a child who is more likely than average to have an accident or a meltdown is using everyday items.

A general holiday facility, for example, may not cater in such a specialised way as a dedicated respite facility, so if there are strategies that help at home, there may be ways of exporting these to other places the child stays at. For example, materials like Dycem™ or Tenura™ are easy to transport and can make things more difficult to move. A generalised facility that is less used to catering for those with particular behavioural issues / causes of frustration and disabilities could be pre-advised by parents, and could also seek advice from local children’s or adults’ services, or specialised care facilities.

Insurance with a larger excess is cheaper insurance. Perhaps facilities could consider taking out more comprehensive insurance, for example with a smaller excess and of a type that covers for replacement value rather than cash value, as above. They could also publish their procedures for dealing with such incidents so that these are on good legal grounds, and so that everyone using the service knows where they stand.

Related information

Accidental damage caused by children (ideas from a private company), http://www.moneysupermarket.com/home-insurance/accidental-damage-caused-by-children/

Accidental damage in school – who pays? (discussion), http://www.netmums.com/coffeehouse/tweens-teens-581/teens-61/1041867-accidental-damage-school-who-pays-all.html

Personal liability insurance scheme for bodily injury, National Autistic Society, (one example of such a scheme),http://www.autism.org.uk/get-involved/membership/members-area/benefits/autism-specific-insurance/personal-liability-insurance.aspx.

Books on sleep in our library

Dog with head resting on a book

Books on sleep

We have several books on sleep in our postal lending library. Below is a list.

For kids:

C0166 – What To Do When You Dread Your Bed

Advice for children with disabilities:

L1320 – Sleep Better: a guide to improving sleep for children with special needs
L6325 – Sleep Disturbances in Children and Adolescents with Disorders of Development
L6392 – Sleep Difficulties and the Autism Spectrum
L6367 – A Clinical Guide to Paediatric Sleep
General sleep advice for children:

L6315 and L6531 – Solving Children’s Sleep Problems: a step by step guide for patents
L6107 – The New Baby and Toddler Sleep Programme
L6324 – Teach Your Child to Sleep: solving sleep problems from newborn through childhood