Category Archives: Practical Help

Support for our Problem-Solving Toolkit Workshops

We are very grateful to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation who have each awarded us a £5,000 grant to fund our Problem Solving Toolkit Workshops.

Their generous support means that we can help more parents and carers to access health, social care and education support services for their child, helping them to discover a better life together.

Our Problem Solving Toolkit and Workshops are designed to help families access the services that their children need, and are entitled to. The Toolkit is a comprehensive, practical and easy to use guide, packed with useful advice, solutions and precedent letters. You can download the Toolkit here.

Problem Solving Toolkit Workshops

This year we have launched our Problem Solving Toolkit Workshops which use the information and resources in the Toolkit to give parents, carers and professionals the skills and knowledge they need to advocate for themselves. Each workshop lasts for 3-4 hours and includes a presentation, case studies for group work and a chance to discuss and share experiences. The workshops are free.

We’ve had some great feedback from parents and professionals who attended our initial workshop:

  • “A wonderful guide to help parents, thank you so much. It is a real maze and you have provided a crutch for parents to use”. (A parent)
  • “I will be recommending this resource to the families that I work with. It is wonderful”.  (A professional)

Thanks again to The Santander Community Fund, via the Community Foundation in Wales, and The Boshier-Hinton Foundation for their generous support.

Can’t find a riding helmet to fit your child?

We introduce the newest member of our Innovation Centre and would love to hear from you if your child would like to try horsey activities but you can’t find a helmet to fit.

New team member

Maria Kemys

Maria Kemeys

“Hi all, my name is Maria Kemeys. I am the newest member of the CIC team as their new Business Development Officer. I am a recent graduate with a Master’s in Business Administration and have a massive passion for working with a charity who contributes to changes that impact and better a child’s life. I am delighted to have been offered the position to work alongside the team in the Cerebra Innovation Centre where innovative and life changing work is being carried out every day to help children in unique situations. I am looking forward to working as part of the CIC to develop new and existing projects for families and children, helping to them to enjoy life together.

Can’t find a riding helmet to fit your child?

Tommy Lee wearing his helmet

Tommy Lee wearing his helmet

You may remember that in 2016 we were approached by a school on behalf of young man called Tommy Lee. Tommy Lee was unable to participate in their weekly horse riding sessions as the riding centre did not have a helmet that would fit Tommy Lee’s unique head shape.

Our Innovation Team worked hard to design and make a bespoke riding helmet that meant Tommy Lee could take part in riding lessons with his friends. The helmet was not only comfortable but safe and certified by the British Standard Institute (BSI).

Thanks to a donation from Mr and Mrs Coventry at Claire’s Project our team are now able to develop more of these equestrian helmets. So if your child loves horses and would love to try equestrian hobbies but can’t participate because of the standard helmet size,  then please get in touch to find out more.

You can contact the team on cic@cerebra.org.uk or call 01792 483688

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.

Workshops

We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on davidw@cerebra.org.uk. All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.

Freecycle

Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.

Signposting

We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or enquiries@cerebra.org.uk

References:

(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Finding Legal Advice

LawAs a parent or carer of a disabled child you may need to seek legal help at some point. Identifying and approaching a solicitor for legal help can be a daunting prospect for families and your choice of solicitor can be critically important.

Our Guide to Finding and Assessing Sources of Legal Help is intended to help you with this process and we recommend you read this before contacting a solicitor.

Download Finding and Assessing Sources of Legal Help (PDF)

 

 

Disabled Facilities Grants Project

The school of law team at the University of Leeds

The school of law team at the University of Leeds

Joseph is one of the students working on our Legal Entitlements and Problem-Solving (LEaP) Project at the University of Leeds. In this article, Joseph tells us more about the students’ Disabled Facilities Grants project.

William (not his real name) is 14 years old and has autism. He’s a big, tall lad, who is much loved by his family.  William is non-verbal and has severely challenging behaviour. He has two younger sisters who are affected by his unpredictable, aggressive behaviour and their sleep is often disrupted when William is awake at night.  His family members say that they could cope if there were more space in their home – so that William could have a place to calm down on his own and the family could have some space and time to relax with friends.

Their house is small and they are unable to afford this building work: it would cost about £45,000 for a small extension to provide the necessary space for William (a bedroom and bathroom).  Without this adaptation work they will be unable to cope and the only alternative would be for the local council to provide residential full time care.  This would cost from £3,000 – £9,000 per week, amounting to significant costs over the course of a year. Moving to residential care would have a devastating impact on William and his family.

You might think that families should have easy access to help with adaptations of this kind – but the research being undertaken on behalf of Cerebra by students at the School of Law, University of Leeds, suggests that this is not the case.

The law entitles families to Disabled Facilities Grants (DFGs) for such work and the Government has significantly increased the allocation of these funds.  And yet some families experience great difficulty in obtaining support of this kind because councils (contrary to the law) are refusing to provide extensions for autistic children who don’t have any mobility problems.

The student researchers are working with a local disabled people’s organisation – the Access Committee for Leeds – to assess the cost effectiveness of DFGs provided to families with autistic children to cover the cost of providing home adaptations.  They are visiting and interviewing families who have had adaptations and families who are in desperate need of such grant support.  Their report will be published in February 2017.

For further information, contact Sorcha McCormack at S.M.McCormack1@leeds.ac.uk.

You can find further information about the Cerebra Disabled Facilities Grants Research Project  (DFG Project here).

Chakotay explores his world

Our grants scheme can help fund equipment and services to help make life a little bit easier and more enjoyable for children and families. The Greening family applied for funding to buy a Hippocampe All Terrain Beach Wheelchair to help their little boy explore his world:

0005-cardingham-woods-59

“Our little boy’s Hippocampe wheelchair came yesterday and was all set up ready for his maiden voyage this morning!

This chair is going to make such a big difference to our lives as we are surrounded by lovely beaches and fantastic woods, all which have been virtually inaccessible as he grew older and bigger and heavier – he is nearly 5 years old now. He was born blind with developmental delay and cannot talk. He also has low muscle tone and cannot walk and therefore has to be carried across the sand or woodland trails – not any more though!

chakotay collage

We took him down to the beach this morning, right up to the shore line where he sat listening to the waves and catching the wind, it was just perfect for him and he loved every minute, the smiles on his face telling you the whole story. He sat in the Hippocampe like a little king, he loves the arm rests and the feel of the big tyres.

We’ve also been to the woods. He loved the noise of the trees rustling and the stream running, as you can see he got so much out of it. This will open our adventurous side and get everyone out and about (not just me!). We also got my grandson Ethan in on the act by pulling the wheel chair on the special harness.

We know he will have so much fun in it all year round and for us , no more heavy lifting or dragging with wheel chairs or buggies.

We can not thank you and your amazing charity enough, this would not have been possible without you. We thank you from the bottom of our hearts”.

School Transport in England: A guide for parents

This guide explains the legal duties on local authorities to provide free school transport for disabled children in England. Our aim is to help parents and carers understand their legal rights, but this guide is not intended to be legal advice and it should not be relied on as such. The law relating to school transport can be complicated and you may need to take independent legal advice to find out how the law applies to your particular circumstances.

This guide is one of a series of guides to be published by Cerebra that aim to give parents of children with disabilities and/or special needs information on how to get the help and support they need. You can download the guide below.
 
 

Download now

First published 2016. This edition 2016. Review date 2019.


 

Your response to the following statements will help us to make our information more useful. The questions relate to the resources that can be viewed on this page.

Two Cerebra Parent Guides Highly Commended by BMA

Two of our parent guides have been Highly Commended at the 2016 British Medical Association (BMA) Patient Information Awards. We were delighted to receive the awards for our Parent Guides on ‘Returning to School: A teacher’s guide for pupils with brain tumours, during and after treatment’ and ‘Anxiety: A Guide for Parents’ at a ceremony on 12th September.

We are determined to give every family that includes a child with a brain condition the chance to discover a better life together. By listening and working with families we are able to use that information to inspire the best research and innovation before helping them to put the knowledge into practice so that they can discover a better life together.

The British Medical Association’s Patient Information Awards were established to encourage excellence in the production and dissemination of accessible, well designed and clinically balanced patient information.

Tracy Elliott, Head of Research at Cerebra said: “Parents regularly tell us that they have difficulty in getting reliable information on their child’s condition, especially for those conditions that are less common. Providing clear accessible information that translates research into practical support and advice for parents is a priority for Cerebra. We are delighted to receive BMA recognition for our work”.

We produce a range of Parent Guides on a variety of topics which are available free of charge from our website. As a certified member of the Information Standard since 2013, parents and professionals can be confident that the health and social care information we produce is of the highest standard.

Returning to School Guide

The ‘Returning to School’ guide is intended to help teaching professionals, as well as hospital oncology paediatric departments and parents and carers, to support a pupil with a brain or spinal tumour who may be absent from school for some time, or may have sporadic attendance with a very serious illness. It explains what the pupil may be going through both medically and psychologically and offers practical strategies for ensuring supportive reintegration back to school. Suggestions are given for how teachers, assistants and SENCOs can provide sustained and targeted support for pupils who face extended treatments, devastating long term side effects or an uncertain future.

The full guide is supported by a Facstsheet pinpointing strategies to use where memory and cognition may be impaired, and two infographics on ‘What to do if a child is diagnosed with a brain tumour’ and ‘What to do if a pupil with a brain tumour becomes palliative and may die’.

A number of prominent health professionals from The Royal Marsden NHS Foundation Trust were involved in developing this resource, namely: Dr Lesley Edwards, Consultant Clinical Psychologist; Dr Lynley Marshall, Oak Foundation Consultant in Paediatric Oncology Drug Development; Gabriella Haeems, Assistant Psychologist. The resource was reviewed by Dr Susanna Waern, Principal Clinical Psychologist.

Anxiety Guide

Our ‘Anxiety: A Guide for Parents’ was developed to give up to date information on how to spot the signs of anxiety and anxiety disorders and examine what can be done. Part one describes the common signs of anxiety and specific anxiety disorders. Part two describes the ways professionals assess anxiety in children with intellectual disability, and part three gives guidance on helping your child reduce feelings of anxiety and gives some examples of specific disorders associated with anxiety.

The resource was written by Dr Jane Waite, Postdoctoral Research Fellow at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham; Dr Hayley Crawford, Research Associate at the Centre for Research in Psychology, Behaviour & Achievement at Coventry University; Rachel Royston, PhD student at the University of Birmingham. The guide was peer reviewed by Professor Chris Oliver of the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.


 

These publications will now be held by the BMA library and recommended for parents and professionals. Cerebra were one of the smallest charities recognised by the BMA in this way. Our publications will sit alongside resources developed by large well established charities such as Marie Curie, Macmillan Cancer Support, The Children’s Trust and The British Heart Foundation, as well as resources developed by various NHS Trusts. Our thanks go to everyone involved in these projects.

The full range of Cerebra guides can be downloaded free of charge from our website.

Luke Clements: How I Became Involved in Research and What I Hope to Achieve

Professor Luke Clements is Cerebra Professor of Law and Social Justice at the School of Law, Leeds University. He explains how he became involved in research and what he hopes to achieve.

“I came to academic research relatively late in my career.  Initially I was a full time practising solicitor specialising in what is known as ‘public law’: claims against public bodies.

I realised however that winning cases did not necessary make public bodies change the way they behaved: quite often it made them more defensive.  Only a few people were able to take court cases as legal aid was often difficult to obtain. Even with support, challenging public bodies can be a dispiriting, exhausting and intimidating experience.

This realisation is why I became involved in research.  I was fortunate to get a post at Warwick University, then at Cardiff and I am now at Leeds.  For the last 20 years my research focus has concerned the law relating to the social care rights of disabled people and their carers.  During this period it has been accepted that social care law needed to be made more accessible.  This has recently resulted in reform legislation in England and Wales – for which I acted as the special adviser to the Westminster Parliament.

Streamlining the law is welcome but in itself insufficient to enable all disabled people and their carers to access their entitlements.  Public bodies face many competing demands and this can pose enormous problems for individuals with limited resources who are not familiar with the system.  What is needed are mechanisms that help families overcome these barriers.

Cerebra had also recognised this important need and in 2013 I was honoured to be awarded a Cerebra Research Chair to take this work forward.

The LEaP Project

Our programme, known as the ‘Legal Entitlements and Problem-Solving (LEaP) Project’ has two intertwined elements – both involving a high level of collaboration between the University and the Cerebra in-house research team.

Legal advice scheme

The first element is a practical legal advice scheme for families who are having difficulty accessing health, social care or other support services.  Requests are received and assessed by Cerebra staff and those cases which meet our eligibility criteria are referred to the Project Team for consideration.

In the second element of the LEaP Project we analyse the information generated by the legal advice scheme to help identify commonly occurring problems and practical mechanisms that can help families overcome these.  This research takes us in many directions.  One of these involves the use of ‘pro bono students’ to prepare reports on specific ‘commonly occurring’ themes and another concerns expert input from our Family Research Ambassadors.

Pro bono Student support

Universities have many excellent resources – not least their students.  With the cutbacks in legal aid and other advice agencies, many Law Schools are developing ‘law clinics’ that try to address these difficulties.  Cardiff Law School (where the research centre was formerly based) and Leeds have two exceptional pro bono law student programmes (pro bono is the fancy legal term for ‘free’!).

In the past few years our students have provided legal opinions on a wide variety of issues of central concern to families and these are published in the Digest of Opinions. This aspect of the programme is now focussing on systemic problems identified by the LEaP legal advice work (above).  Most recently this resulted in a report on the quality of ‘short breaks’ support in England and in the coming years we plan to research difficulties obtaining ‘Disabled Facilities Grants’, problems with school transport arrangements and the delay many families experience in obtaining a diagnosis when it is suspected their child may have autism or similar impairment.  This work feeds into our underpinning research (below) and also identifies areas where there is a need for an advice guide.

Family Research Ambassadors (FRA) Scheme

To understand ‘what works’ in relation to ‘problem solving’, families of disabled children are the best people to ask. Many have become experts in navigating the bureaucratic maze and scaling the administrative hurdles.  The FRA Scheme (first developed by our Cerebra Chair colleague Professor Richard Hastings at Warwick) brings together such experts by experience and with their help develops ‘problem solving’ tools (such as the ‘Toolkit‘).  The FRA members then disseminate the problem-solving expertise through regional training programmes, seminars, presentations etc.

We have just completed a very successful FRA scheme in the Bristol / South Wales region and with Cerebra we are seeking additional external funding to develop similar schemes in every region of the UK – so if you are able to help with this in any way – please let us know.

The underpinning research

Underpinning all these activities, the research at Leeds seeks to:

  • identify the key factors that build resilience – enabling families to continue until they have obtained the support they and their children need
  • identify the most effective mechanisms for resolving commonly occurring problems.

As part of his PhD research, my colleague Derek Tilley is undertaking empirical research on this question: pulling together the relevant data and experiences of the advice, pro bono and FRA programmes.

This is the most exciting, engaging and practical research with which I have been involved.  It is research that is having a direct effect – improving the lives of many families and also, through a constructive dialogue with the hard pressed public bodies, making significant changes to their practices”.

Ask for help from our Legal Entitlements and Problem-Solving (LEaP) Project

ask-for-help-from-lerpLEaP is an innovative problem-solving project that helps families of children with brain conditions cope with the legal barriers they face.

We listen to families and help them get the knowledge they need to access health, social care and other support services. We identify the common legal problems that prevent families getting access to services and we develop innovative ways of solving those problems. We aim to reach as many families as we can by sharing our solutions as widely as possible.

Public bodies in the UK have certain duties to provide health, social care and other services for disabled children. Sometimes, however, families can experience difficulties in accessing these support services. Our LEaP Project has evolved from a number of initiatives set up by Cerebra to inform parents of their legal rights, including seminars, parent guides and template letters. Cerebra recognised that some parents might need additional support to approach the relevant authorities and decided to fund the LEaP Project, which is led by Luke Clements, Professor of Law and Social Justice at the School of Law, University of Leeds. The Project Team aims to provide free legal advice to families who need help getting the right support for their children.

The Project is open to parents and carers of children aged 16 or under who have a brain condition and who need help to resolve a legal problem regarding access to health, social care or other support services. Requests for help must satisfy our eligibility criteria – you can find out more in our Project Guidelines below.

If you would like to ask for help from the Project, please read our Project Guidelines and fill in the online request form:

Read the project guidelines
Fill in our online request form

Contact Us
If you would like further information, please contact us at probono@cerebra.org.uk or on 01267 242582.