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

Resources – July 2014

Dictionery definition of 'resource'
Our monthly round up of useful resources.

PAWS dogs for the disabled
Workshops around the country, open to parents of children with a clinical diagnosis of autism aged between 3 and 16 years, either with a dog or thinking of having a dog.

Creating your own video clip
Trendsetters guide to creating your own video clips for the Internet. This is a follow-up to a workshop with a group of young disabled people (Scope).

A gesture of hope
Article about the use of gesture-based technologies (using computers etc.) for children with severe movement difficulties (SEN Magazine).

Children and Young People with Complex Health Needs
A booklet for families covering home life, relationships, fun, rights, future planning and useful links, (Foundation for People with Learning Disabilities).

Looking for an Ordinary Life
A related briefing “Looking for an Ordinary Life” reports on what families have found helpful, particularly where there is a child dependent on medical technology. The Foundation for People with Learning Disabilities also have a number of other publications available.

Strawberry Jam Books
Free e-books and games for children aged 4-12, (Strawberry Jam Books / Hilary Hawkes).

The CNS Store
Online store of brain injury-related products, (Centre for Neuro Skills, USA.  The same organisation also has a specialist bookstore).

Camp Experts UK
Advisory service promoting summer camps and programmes for young people with special needs, mostly abroad, some in the UK.

Public services information relating to children and disability:

The Children and Families Act and The Care Act
Factsheet about the effects of the recent Children and Families Act and Care Act on the transition to adult services in England, (Preparing for Adulthood).

Destinations of key stage 4 and key stage 5 pupils: 2011 to 2012
Destinations data:  where pupils have gone on to after leaving school or college. Designed to help parents in their choice of school.

Human Rights: Human Lives
A guide for public services on implementing the Human Rights Act.

Implementing the 0-25 Special Needs System (England)
Updated guidance for local authorities putting the systems in place for September 2014,https://www.gov.uk/government/publications/implementing-the-0-to-25-special-needs-system.

SEND
Resources aimed at early years workers (England), showing what can be expected in nursery and pre-school provision as a result of the new system.

Supporting pupils at school with medical conditions
Proposed statutory guidance for supporting pupils at school with medical conditions (England) from September 2014.

Mental health and behaviour in schools
Guidance to assist schools to identify and support pupils with mental health needs, (Dept for Education).

Special Educational Needs and Disability (SEND) Code of Practice
The new Special Educational Needs and Disability (SEND) Code of Practice for England, to replace the existing SEN Code of Practice for education, has been published.  The new one also includes health and youth offending organisations, and extends to the age of 25. Announcement by the Minister, Edward Timpson on 11 June. The Code can be found here and it comes into force on 1 September 2014, although initially some arrangements will be “transitional” from the existing system.

Carmarthen Slimmer’s 10k Challenge

Sarah Jones preparing for 10k race

Sarah Jones preparing for 10k race

A Cerebra slimmer has dropped nearly six stone and is getting ready to embark on a gruelling 10K run in aid of children with neurological conditions.

Sarah Marie Jones started her slimming journey last year and in little over 12 months has lost five stone eleven pounds. Encouraged by work colleagues as well as friends in the slimming group she attends, Sarah gradually began to shed the pounds and see the health benefits that come with losing weight.

“At my start weight, I struggled to do the simplest things,” Sarah explained, “I even struggled to get off the sofa and I knew then that I had to do something about it.” As she started to approach a healthier weight, she started to go to the gym to tone and improve her fitness levels and was offered the opportunity of running the British London 10K on July 13th. “At first I was concerned that I wouldn’t be able to run but I wanted to give myself a bit of a challenge to prove how far I’ve come,” she continued.

As well running to challenge herself, Sarah is also using the opportunity to raise funds for Cerebra. She is hoping to raise £500 to help improve the lives of families affected by neurological conditions.

You can follow Sarah’s progress and her own frank account of her training through her blog:www.runmyselfskinny.blogspot.co.uk .

If you would like to donate, you can visit her Just Giving site at www.justgiving.com/runmyselfskinny .

The Coral Garden Auction

Luke Mosley with coral from his shop

Luke Mosley with coral from his shop

Business owner Luke Mosley from Dorset has come up with an unusual way of raising money for Cerebra – by holding a coral auction.

Luke runs The Coral Garden in Poole, Dorset. The business aims to promote sustainable reef-keeping by providing an alternative source for corals and marine invertebrates farmed in the UK.

Luke decided he wanted to do something a little bit different to fundraise for charity after he found out about Cerebra, so he thought he’d auction some of his corals through his facebook page. You can find out more about the coral auction here.

The auction is attracting some interest with one bidder commenting “Cerebra is an excellent charity to support, they help kids with cerebral palsy such as my son.”

All of our services are funded by the public, so this auction, among many other events and activities, is vital to help us keep up our work.

If you have your own idea for fundraising visit our fundraising page today and help us make a positive difference.

Cycling Success for Cerebra

Cycling team with Cerebra staff

Cycling team with Cerebra staff

A huge well done and thank you to the team of cyclists from Carmarthen AFC.

Everyone at Cerebra would like to say thank you to the team of cyclists from Carmarthen AFC for raising over £5000 for the charity!

The team – Anthony Parnell, Ashley Williams, Ceri Rees, Emlyn Shciavone, Moira Gorman and Paul Evans – rode all the way from Holyhead to the finish in Cardiff Bay from Thursday the 26th of June to Sunday the 29th.

Meeting them at the finish line were Cerebra’s CEO Chris Jones, Head of PR & Fundraising Sian Morgan, Head of Parent Support Kelly Gadd and ambassador Sian Taylor with her son Ollie who has Wolf Hirschhorn Syndrome and epilepsy.

Ashley Williams and Alfie

Ashley Williams and Alfie

 

The team’s cycle ride is a great example of the kind of thing you can do to raise money for Cerebra. Take a look at our fundraising pages for more ideas.

Thank you again to Carmarthen AFC!

Three Peaks 2014

The team reach the top of one of the peaks

A photo at the top!

A team from the DVLA in Swansea will be taking on the Three Peaks Challenge to raise money for Cerebra.

Jason Thrupp, Noel Husband, Stephen Hartnoll, Matthew Bromham and Andrew Jones will be tackling the UK’s highest mountains – Snowdon, Scafell Pike and Ben Nevis.

Their challenge starts on Friday 4th of July at 5pm when they set off from Swansea, ending Saturday 5th of July at 5pm. They’ll be joined by their driving support team of Ian Irvine and Peter Truscott-Stroud.

The DVLA boys have already completed the Welsh Three Peaks Challenge last year, scaling Snowdon, Cadair Idris and Pen Y Fan.

The team have a real challenge on their hands, with Snowdon measuring 1085m, Scafell Pike 978m and Ben Nevis reaching 1344m – all to be completed in 24 hours.

Everyone at Cerebra wishes the DVLA team good luck.

Poole High School has the X Factor

Chris Bennett handing Gareth Owens a cheque

Chris Bennett handing Gareth Owens a cheque

Poole High School have donated an incredible £600 to children’s charity Cerebra.

To raise the money the school held a duet competition at school where 16 teachers were paired with 16 students to battle it out in an X-Factor style competition.

A range of songs from Katy Perry, McFly and Frank Sinatra were sung to varying degrees of success from staff. The staff also made a music video for pupils to watch for ‘What Does the Fox Say’ and students could buy badges to support their favourite teacher in the run up to the event.

The school decided to support Cerebra through contact with local Cerebra Ambassador Chris Bennett. Chris and his wife Hannah are proud parents to Elliott who was born 8 weeks prematurely and diagnosed with Cerebral Palsy at 8 months old.

He is now 2 years old and a very happy, chatty little boy who can’t stop smiling! The family don’t know how much cerebral palsy will effect Elliott’s life and initially found it very hard to come to terms with Elliott’s diagnosis. Cerebra have supported the family as Elliott works so hard to make his own special journey in life.

Everyone at Cerebra is extremely grateful to the staff and students at Poole High School. The money they raised will help the charity to continue making a positive difference to the lives of thousands of children and their families.

Angelina Parker, a teacher at Poole High School, along with some of the pupils who took part in the duet competition  presented a cheque to Cerebra Ambassador Chris Bennett and the charity’s Regional Fundraiser Gareth Owens on Friday 20th June at the school.