Alissa prepares for 10K challenge

Alissa running

Alissa in training!

This year, the London 10K is celebrating its 15th anniversary and for this very special year, we have a very special person to run the race for us!

Alissa Elsaesser, who was born with Down’s Syndrome has never let anything hold her back and is determined to rise to the challenge and make it around entire route.

Alissa is currently in her last year of college where she enjoys many hobbies including singing, cooking and even skiing! As well as having a hectic social life, Alissa also volunteers at Cerebra during the holidays, helping with our two raffles that take place every year.

Running 10k will be a huge challenge for Alissa but she will have the support of her father Alex Elsaesser who will be running the race for the fourth time for Cerebra this year.

“This will be a big challenge for her. She is trying to raise £1,000 for Cerebra and if you are able to sponsor her, it would be a great encouragement for her to keep training,” Alex said.

Alissa has been training hard for the race which takes place in less than a month on 12th July and is confident that she will be able to make it around the gruelling course with moral support from family and friends.

Alissa is very close to her target of £1,000 and is now hoping to far exceed that. We are currently in the middle of a telephone campaign in order to raise money towards her final target and so far our fundraisers have had an incredible £9,698 donated to them from generous members of the public. You can show your support by calling 01267 244221 to make a donation or you can donate through Alissa’s Just Giving page: https://www.justgiving.com/Alissa-Elsaesser/.  Please give generously to help spur this very special lady on!

Christine completes skydive challenge

Christine Bunting jumping out of a plane

Christine Bunting jumping out of a plane

On 13th June, Christine Bunting of Hyphen Law did a sky dive in order to raise money for Cerebra.

Christine and Hyphen Law have been kind enough to help us in the past and when Corporate Development Officer Gareth Owens suggested that Christine throw herself out of a plane for us, she jumped at the chance!

“I had trained to jump solo many years ago but never managed it, being sabotaged by poor weather. What could be easier than diving with an experienced instructor who would be doing all the work?” Christine told us.

On the day of the jump, low cloud threatened to force the skydivers to postpone but it soon cleared to reveal a bright, clear day and perfect jumping conditions.

Christine gave us her own account of the whole experience: “Nothing quite prepares you for that initial tumble through the hatch or the buffeting of the wind. The experience quickly became one of the most truly exhilarating of my life.

My tandem diver for the day was the reassuringly solid and encouraging Sgt Mark Scobie of the Red Devils who looked after me fantastically well, even taking time to point out views of interest on the way down!  I suppose that when you have jumped over 8,000 times things do take on a slightly different perspective! Once the parachute deployed things became a little quieter and a little slower but not slow enough because before I knew it all was over and after a surprisingly gracefully landing I had returned to terra firma.

Would I do it again? You bet I would and for Cerebra.  Thank you to Go SkyDive and Mark for looking after me and for Gareth for suggesting it.”

Christine has so far raised an incredible £2,880 for Cerebra and is still going! You can check her progress and donate through her Just Giving page. You can also watch a video of Christine’s jump here.

Everyone at Cerebra would like to say a huge thank you to Christine for all of her efforts and for being so willing to throw herself out of a plane to raise money for us!

If you think you have what it takes to join the elite Cerebra skydivers club or if you would just like to throw yourself out of a plane to raise money for us please contact Gareth Owens at garetho@cerebra.org.uk.

News – June 2015

A stack of newspapers

Our monthly roundup of news and legislation.

New NICE (National Institute for Health and Care Excellence) guidelines:

Vaccines
Revised recommendations for the administration of more than one live vaccine (which combinations should or should not be administered on the same day, or at an interval), (Public Health England).

Changes to government helpline numbers
The Disability Living Allowance (DLA) helpline number is now 0345 712 3456 and the Carer’s Allowance Unit number is 0345 608 4321.

Mental Health Act Code of Practice
A revised Mental Health Act code of practice is now in force, aiming to better protect patients and clarify roles, rights and responsibilities, (NHS Confederation).

DLA and Tax Credits
Contact a Family have pointed out that many parents whose children receive DLA are unaware that they may be entitled to extra child tax credit payments.

New address for ADDISS (ADHD Information Services): 
79 The Burroughs, Hendon, London  NW4 4AX.  Tel: 020 8952 2800.

Scotland’s National Action Plan for Human Rights (SNAP)
SNAP has a new website. It includes a series of video case studies about the impact of human rights assertion on individuals.

Legislation

2015 No. 1309 (W. 113), The National Curriculum (Moderation of Assessment Arrangements for the Second and Third Key Stages) (Wales) Order 2015.  From 1 September 2015, requires schools in Wales (other than special schools) to standardise teachers’ assessment of pupils’ attainments through membership of “cluster groups”.

The Victims and Witnesses (Scotland) Act 2014 (Commencement No. 4 and Transitional Provisions) Order 2015, brings into force parts of the Act from 1 July and other parts from 1 September.  Those for September include provisions for the treatment of vulnerable witnesses, which will also be affected by the transitional arrangements in the meantime.

2015 No. 202, The Community Care (Provision of Residential Accommodation Outwith Scotland) (Scotland) Regulations 2015.  From 24 June 2015, regulates residential care provided for Scottish people in parts of the UK other than Scotland.

2015 No. 213, The All-Scotland Sheriff Court (Sheriff Personal Injury Court) Order 2015.  From 22 September 2015, provides for a single Court to deal with most Personal Injury cases in Scotland.

2015 No. 212, The Education (Student Support) (Miscellaneous Amendments) (Scotland) Regulations 2015.  From 1 August 2015, amends the eligibility criteria for receiving student loans.

2015 No. 258, The Parking Places on Roads (Disabled Persons’ Vehicles) (Amendment) Order (Northern Ireland) 2015.  From 17 June 2015, makes changes to the designated parking spaces.

2015 No. 1335 (W.126), The Care and Support (Care Planning) (Wales) Regulations 2015.  Further provision relating to Section 54 of the Social Services and Well-being (Wales) Act which will be in force from 6 April 2016.  This includes the training and expertise of those deal with care plans (for both cared-for and carers), the content of plans, and the review of plans.

2015 No. 244 (C. 34), The Vulnerable Witnesses (Scotland) Act 2004 (Commencement  No. 8) Order 2015.  Brings section 10 of the Act (provisions to proceedings in the district court) into force from 1 July 2015.

2015 No. 1371, The Child Trust Funds (Amendment No. 3) Regulations 2015.  From 1July 2015, widens the range of types of investment that can be associated with a Child Trust Fund, and changes the arrangements for managing accounts belonging to children aged over 16.

2015 No. 1379, The Scotland Act 1998 (Modification of Schedule 5) Order 2015.  From 11 June 2015, the Scottish Parliament can regulate the description of motor vehicles and trailers which transport pupils and students to and from places where they receive education or training.

2015 No. 1362, The Universal Credit (Waiting Days) (Amendment) Regulations 2015.  From 3 August 2015, there will be a new 7-day waiting period for the start of universal credit, under certain circumstances.

2015 No. 254, The Equality Act 2010 (Specific Duties) (Scotland) Amendment Regulations 2015.  From 11 June 2015.  Amended dates by which different public bodies must comply with duties under the Act.

Events – June 2015

Education, Health and Care Plans
A seminar for parents, carers and professionals [in England], London EC1, 29 June 2015.  (Cost for parents: £5 including lunch).  (Ambitious About Autism).

A Day at the Beach
Autism West Midlands are running a trip from Birmingham to Weston-super Mare, 10 August 2015.
Small charge, book in advance, (Autism West Midlands).

Pathways through transition
Life after compulsory education for young people with vision impairment.  1 July 2015, Birmingham. Cost for parents, £60, (RNIB).

Resources – June 2015

ResourcesOur monthly roundup of useful resources.

Muir Maxwell Trust
Practical support for families of children with severe epilepsy.

Epilepsy Sucks UK
A parent-led organisation that gives anti-suffocation pillows to suitable children with epilepsy.

Free Epilepsy Smartphone App
The Epilepsy Society offer a free app for Android and iPhone, with a seizure diary and first aid information.  They have also updated their “Just diagnosed” pack, which can be ordered free from their website. This contains a seizure diary, first aid cards, a helpline card, a “What would help me?” postcard, and an ID card and wallet.

Fledglings Second-Hand Service
For families to buy and sell larger pieces of second-hand special needs children’s equipment,

Youth Services
Interactive map to find your local youth services, including counselling, advice and information, (Youth Access).

Heatwave plan for England
Updated advice on keeping children and other groups safe during hot weather, (Public Health England).  High risk factors such as certain disabilities, inability to adapt, environmental factors  and medications that increase sensitivity to ultraviolet are described more fully in a related document, “Making the case”.

Prescriptions and Holidays
Information about getting an extra supply of a prescription medicine to cover a holiday, (NHS Choices).

Communication Development
Early years resources to support children’s communication development, (Communication Trust).

Well at school
Advice and information for teachers of children with various conditions in order to help them manage these at school (Chelsea Community Hospital School). Also of interest to parents.

Futurelearn
Free online courses from universities and cultural institutions.

Mental Health Behaviour Guidance
Government guidance relating to school pupils:  how to differentiate between issues of bad behaviour and issues of mental health, (Dept for Education).

“Find your perfect tutor”
A searchable database of tutors in various different subjects. (Teachigo, privately-run database).

“How do I explain autism to a sibling?”
Article covering ways of making autism understandable to other children of different ages and developmental stages, (Autism Awareness Centre Inc.)

Building resilience in children
A series of short videos and information explaining the interaction between genetics, care, environment and brain development, (Harvard University, Center on the Developing Child).

“Information sharing matters”
Interactive video-based e-learning about effectively sharing information between families and a range of professionals including paediatricians, health visitors, GPs, therapists, child minders and pre-school and nursery teachers. (Royal College of Paediatrics and Child Health).

“Disability matters”
Free e-learning designed to challenge and positively change attitudes amongst the UK workforce / volunteers towards disabled children and young adults. There are 57 learning sessions and resources to go with them, (Royal College of Paediatrics and Child Health).

Accessible Meetings
Short guide to making meetings accessible to people with learning difficulties / disabilities, (SCIE, Cecilia Mercier).

Great Adaptations
An expert’s view of modifications that could be made to a house to ensure full access and independent living for a person with serious injuries, (Irwin Mitchell).

Step-by-step guides to living with disabilities
Free e-book series, (Henshaws Society). Sample title: “Supporting your child to maintain skills for independent living”.

Respite for Carers
Information about carers’ breaks and respite care, (NHS Choices).

Carer’s Allowance
New factsheet on Carer’s Allowance, (Contact a Family).

Personal Budgets
New factsheet on Personal Budgets in England, (Contact a Family).

Mental Health Act (1983) Code of Practice factsheets
Designed particularly for those in hospital under the Act, and their carers, (NHS Choices).

Free online course about applying the new SEND legislation in England
Designed for educationalists but also informative for parents, (OnLine Training Ltd.)

Education Rights Series, principally applying to England
Four factsheets on young people over 16 with SEND; school transport; transfer reviews (to move from a Statement of SEN to an EHC Plan); and Education, Health and Care needs assessments, (Down’s Syndrome Association).

The Care Act: transition from childhood to adulthood
Resources, including policy documents and ways of supporting young people, (Social Care Institute for Excellence, SCIE).

Travel insurance covering children with disabilities

At this time of year, one of the questions coming in to our helpline is about travel insurance that will cover children with pre-existing conditions. Many people have travel cover potentially included with a service they already use, such as car insurance, a membership subscription or a bank account, but they have looked in the small print and found that pre-existing conditions are excluded.

Should you be in this position and wish to know where to find an insurer that will provide cover, the list below is a place to start. Some of these companies only cover for certain conditions. (Listing these companies does not imply that Cerebra recommend any of them, only that we know they are there. Please make sure you check that they are suitable for your needs.)

Accessatlast Ltd.

Access Travel specialises in travel with wheelchairs.

AllClear Insurance Services.

Antur Insurance (South Wales).

Fish Insurance.

FML Insurance Services Ltd.

Fogg Travel Insurance Services.

Freedom Insurance.

National Autistic Society autism-friendly holiday insurance.

P.J. Hayman & Co. Ltd., a group of specialist travel insurance companies, each covering different requirements.

Pulse Insurance.

Staysure

A holiday advice organisation that may know of other insurers is Tourism for All.

Government advice about travel with disabilities, which includes insurance, booking, taking medication abroad, law, access, finance, airports and so on.

Other things worth thinking about in advance include:

For travel in the UK, the National Key Scheme for access to toilets for people with disabilities (not all toilets are kept locked, but for those that are), http://nks.directenquiries.com/nks/page.aspx?pageid=10&tab=National+Key+Scheme&level=2 and https://crm.disabilityrightsuk.org/sites/default/files/pictures/RadarKey_Flyer.pdf.

For travel in Europe, a European Health Insurance Card (EHIC) is needed. These cards should be free of charge but they go out of date, so if you already have one it is worth checking that it will still be valid when you travel.  Further details: http://www.moneysavingexpert.com/travel/free-ehic-card.

Barcelona academic chair visit

Barcelona academic chair visit

Barcelona academic chair visit

This April, a group of four from the Cerebra team made an inspection visit to our Cerebra- supported Academic Chair in Barcelona. The team there is led by a dynamic obstetrician, Professor Eduard Gratacós, with a mission to discover ways to detect then prevent the hidden complications of pregnancy which can lead to brain damage in babies.

His department’s findings are widely published, and students from many countries come to Spain to learn the techniques developed there.

Our visit was to two sites, a maternity and neonatal clinical centre, and a Research lab, the BCNatal and Fetal Medicine Research Centre. Prof Gratacós and his team warmly welcomed us, and showed us the clinical and lab facilities. He took us through the aims of their long term research programme , now established for six years and in its second phase of research. Cerebra has supported this internationally recognised programme from the beginning. Our money enables research staff to be employed, initiate studies, then seek large grants for specific or high cost projects from international grant giving bodies. Without Cerebra’s seed funding this just wouldn’t be possible.

Scientists then gave us a series of presentations of their work: firstly, methods of identifying latent or hidden poor growth in unborn babies by studying their brain circulation , ” angiogenic factors ” in the mother during pregnancy, and placental form and function. These factors can now lead to identification before birth of babies at high risk of prenatal brain damage,and potentially enable intervention in those pregnancies before harm has been done.

There is also ongoing development of detailed, computer analysed study of the Fetal and neonatal brain using MRI imaging bio markers, again with the aim of identifying the at risk babies and intervening to help them.

We were given a lovely al fresco buffet to end our visit- overlooking the Barca football stadium which is next door- and met many of the young international trainees and researchers who come here to learn from this amazing department. Details of this research are presented at the Cerebra Annual Conference in London, so anyone who is interested can follow its progress.

Dr Imogen Morgan
Cerebra Trustee.

More school transport success for the Legal Entitlements Research Project

Robyn with her younger sister, AmelieSchool transport has been one of the most common problems referred to our Legal Entitlements Research Project in recent months. Our newsletter in January featured an article about Samantha, who had been struggling to get school transport for her 14 year old son, Kelsey. After our success in helping Samantha, we were able to provide similar help to another parent who lives in the same area, Alan, and his 15 year old daughter, Robyn, who has global learning delay and autistic traits.

The Council decided to stop providing school transport for Robyn in August 2014 on the grounds that the family lived within a walking distance of 3 miles from the school. Whilst it acknowledged that Robyn was unable to walk and needed to be transported to school, the Council decided that it was ‘reasonable to expect parents who have a car to transport their child to school’ and that there were no ‘exceptional reasons to deviate from policy’. Alan appealed twice, but the Council stood by its original decision and he contacted the Legal Entitlements Research Project for help.

We looked at Robyn’s case and explained that local authorities are under a duty to provide transport for ‘eligible’ pupils, which includes children who can’t reasonably be expected to walk to school because of mobility problems or health and safety issues related to their special educational needs or disability. As the Council had accepted that Robyn was unable to walk and needed to be transported, it was clear that she was in fact eligible and the Council should have provided school transport.

Councils are entitled to consider whether it’s reasonable to expect a parent to accompany their child along a walking route, but they cannot insist that parents who have a car should be expected to drive their child to school. We advised Alan to ask for a review of the school transport decision, particularly in light of Samantha’s case.

We were delighted when Alan told us that Robyn had received a letter to say that her transport would be reinstated:

“It was fantastic news. The floodgates then seemed to open for the other pupils who had their transport removed and now they all seem to have had their decision changed. I am hugely grateful and it has made life a whole lot better for Robyn and our family”.

One of the Project’s aims is to focus on problems which have the potential to affect a large number of disabled children, so it’s great to see the impact our work has had for families living in this local authority’s area. We’re also really pleased that the Council in this case acknowledged that there was a problem with its school transport decisions and took steps to resolve the issue for families in its area.

If you’d like some legal advice from the Project regarding your child’s access to services, please have a look at the Project Guidelines for further details and complete our online request form. For more information, contact us on 01267 242582.

New parent guides launched

Cerebra currently funds research at the Cerebra Centre for Neurological Disorders (CCND) and the work at the Centre focuses on the difficulties experienced by children who have intellectual disability. One problem is that many children with severe intellectual disability are not able to communicate that they are experiencing pain and discomfort. Therefore the research team at CCND have produced a Guide to help parents and carers understand how pain may affect their child. This new Guide Pain in children with severe intellectual disability: A Guide for parents  explains the possible causes of pain in children with intellectual disability, presents information about how pain may be shown by children who are unable to say that they are in pain and discusses the effects that untreated pain can have on the child.

A further two Guides have recently been updated in conjunction with Fiona McGhie at Irwin Mitchell solicitors and can currently be found on our website. These two Guides relate to the processes involved when a child with a neurological condition comes into contact with the police and the court system.

The first of these Guides The arrest and detention of disabled children: A Guide for Parents relates to arrest and detention and is specifically aimed at providing parents with information about what is involved if their child comes into contact with the police and what their rights are. It also gives details of useful organisations and resources which can provide further help and support.

The second Guide Supporting disabled children and young people who are victims of or witnesses to crime concerns supporting children with a neurological condition who have been either been a witness to or a victim of a crime. This Guide aims to provide information about the impact of the crime, the support available and the child’s rights.

Our Guides are regularly reviewed and updated and we are always interested to hear your views about our publications and how you think they could be improved. So if you have any comments about these Guides, please get in touch with us at beverleyh@cerebra.org.uk

Lawyers needed

cardiff uniThe pro bono programme at Cardiff Law School needs you!

We are looking for lawyers (possibly retired or who have had to give up (or put in abeyance) a legal career due to caring responsibilities / other interruptions) who are interested on a voluntary basis in getting involved in lending their skills to mentor students on a pro bono programme.

The programme is supported by Cerebra a unique charity supporting disabled children and their families.  As part of the programme students prepare legal opinions on commonly occurring problems disabled children and their families experience in accessing their statutory rights to health, education and social care support services.

We are in need of people with legal skills / experience to work with the students: reading and critically analysing their draft opinions and ensuring these are of suitable quality.

It is not essential to have a detailed knowledge of health, education and social care law as the programme is supervised by Law School staff and an expert team from Cerebra.  What we need is people with legal skills who understand the craft of drafting legal opinions / advice letters.

If this is of possible interest – please make contact with either:

and very many thanks.