Tag Archives: legal entitlements and problem-solving project

School Transport – Dylan’s Story

School transport help

Public bodies in the UK have certain duties to provide health, social care and education support for disabled children. The Legal Entitlements Research Project is open to parents and carers of children aged 16 or under who have a neurodisability and who need help with a legal problem regarding access to health, social care or (to a more limited extent) education support services.

The project publishes an annual round-up of some of the cases the project has helped with, called a Digest of Opinions. One of those cases is that of 11 year old Dylan.

Dylan has severe learning difficulties, attention deficit disorder and autistic behaviours. He has a Statement of Special Educational Needs which identifies his challenging behaviour and entitles him to school transport and an escort.

Dylan’s parents were concerned that his escort was unaware of his needs and didn’t have the necessary skills to manage his behaviour. Dylan had not been introduced to his escort before his first trip to school that term. He became stressed and anxious when travelling to and from school and, on occasion, behaved violently, harming himself, the transport vehicle and other children.

The legal opinion given by the LERP details the legal duties of the authority to make sure that children are transported safely and with the minimum of stress. Drivers and escorts should be properly trained to cope with a child’s specific disability related needs and behaviour.

The full case Report can be found on page 40 of the Digest of Opinions.  All the young people’s names have been changed. The opinions are a statement of the law and policy at that time – it should be remembered that the law does change.

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

Read the Project Guidelines to find out more about the type of legal problems we can help with.

Problem-Solving Toolkit for Families

Cerebra has published a new Problem-Solving Toolkit to support disabled people and carers who are encountering difficulties with the statutory agencies in relation to the provision of health, social care and education support services.

Research conducted by the charity and Cardiff Law School in October 2015 revealed that families of disabled children are experiencing substantial delays in getting an NHS diagnosis and too few parents are being given written information when they do receive their diagnosis. Support services are not always offered and, when they are, they often do not meet the needs of the family. Moreover parents are reluctant to complain about any of this and, if they do, their concerns are often not dealt with adequately.

Whilst UK law provides powerful rights to such support services, this alone can be insufficient. Professor Luke Clements, Cerebra Professor of Law and Social Justice, Leeds Law School and author of the Toolkit explains: “The law can be complicated and difficult to understand. Even when you know what your rights are, it can be daunting, exhausting and sometimes intimidating to challenge public officials. There is a power imbalance and much research suggests (and indeed the Government accepts) that many families are fearful that complaining may make things worse”.

The Toolkit is a comprehensive, practical and easy to use guide to help families resolve difficulties with their statutory health, social care and education support services. It aims to help unpick commonly experienced problems and to offer effective strategies for resolving them. The Toolkit:

• considers nine general categories of dispute, from inter-agency disputes and complex cases to delays and resource issues, and offers detailed advice for resolving them
• identifies key factors that can empower people to claim their rights and to challenge failures when they occur
• offers advice on preparing for, attending and following up on meetings
• sets out a series of template letters that families can use in a variety of situations

It also provides a Jargon Buster, an explanation of what public authorities must do and explores a number of commonly held myths.

To accompany the Toolkit a central website, www.difficultbox.com, is being developed with links to law, practice and self-help guides that have been produced by many charities and support organisations. The facility to post comments and suggestions on the site is being developed.

The Problem-Solving Toolkit is free to download here.

The publication of the Toolkit has been made possible by a 2015 Economic and Social Research Council (ESRC) ‘Impact’ award in addition to financial support from Cerebra.

Survey finds local authorities failing to comply with their legal obligations to parent carers/young carers

A survey of over 40% of English social services authorities by the Cerebra Legal Entitlements Research Project at Cardiff Law School has found serious failing in local authority ‘short breaks’ statements that they are under a duty to publish.

Findings included:

  • Over 90% failed to advise parent carers and young carers of their right to an assessment;
  • More than 85% gave no clear explanation as to how the amount of support provided is decided;
  • In excess of 80% failed to explain what families could do if they were dissatisfied with the support they were receiving;
  • Over 60% failed to mention transport support – to enable the disabled child to attend the short break support;
  • In more than 50% of cases, it was difficult to locate the actual ‘short break statement’.

The report contains advice on how short breaks statements and local authority websites can be improved – particularly the value of having a logical point to start a search (such as a home page with an entry such as ‘social care’ or ‘carers’) and the need for a national standard ‘template’ for all authorities to use.

The report contains some positive findings and of the authorities surveyed, the report singled out the Isle of Wight as an example of best practice and gave ‘honourable mentions’ to Camden, Hampshire, Liverpool and Cheshire West and Chester.

The full report can be accessed at https://w3.cerebra.org.uk/help-and-information/legal-entitlements-research-project/

For further information, please contact:

Professor Luke Clements [who supervised the research] l.j.clements@leeds.ac.uk
Professor Julie Price [Head of the Pro Bono Unit, Cardiff] PriceJA1@cardiff.ac.uk
Tracy Elliot [Head of Research & Education at Cerebra] TracyE@cerebra.org.uk

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.

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. 

Short Breaks and the Law – Ron’s Story

criminal-law-policyWe share the story of Ron who has benefitted from the work of the Cerebra funded Legal Entitlements Research Project based at Cardiff Law School.

Short breaks care is often a vital support need for families with disabled children. Unfortunately some local councils do not always appreciate that they are under a legal obligation to provide such support where it is required.

The ‘Legal Entitlements Research Project’ at Cardiff Law School, which was established with funding support from Cerebra has published a Digest of Cases it has considered – and this includes advice concerning access to respite care. ‘Ron’s story’ (not his real name) is summarised below:

Ron is seven and has Global Development Delay (GDD), the symptoms of which have become increasingly difficult for his parents to manage as he has matured. The symptoms include difficulties with behaviour management and aggressive episodes which are having an adverse impact on his siblings and the wider family unit.

Ron’s social services’ assessment identified a need for him to be cared for whilst his parents had a break (i.e. a need for ‘respite care’). Ron’s parents asked for a Direct Payment to enable them to purchase this care themselves but this was refused by the council because Ron had not had a formal diagnosis of having a ‘disability’.

The legal opinion provided by the Legal Entitlements Research Project clarifies the duty on councils in such cases and in particular that in this case the requirement for a formal ‘diagnosis’ was not lawful; that parents in such cases have an enforceable legal right to a direct payment and that the council had failed to advise them (and their siblings) that they were also entitled to have their needs as ‘parent carers’ / ‘young carers’ assessed.

The full case Report is at www.law.cf.ac.uk/probono/Direct%20Payments.pdf

Further Information

The Legal Entitlements Research Project

For information on how to access the Project, see:www.cerebra.org.uk/English/gethelp/legalhelp/probonoscheme/Pages/default.aspx

The Digest

A copy of the full Digest (which includes Ron’s case) is at www.law.cf.ac.uk/probono/2013%20Digest%20of%20Cases.pdf


Legal Entitlements Team Help Overturn Council Decision



Cerebra was recently contacted by Samantha, a parent who had been struggling to get school transport for her son, Kelsey, who’s 14 and has Down’s Syndrome.

Her local Council turned down her application for transport on the grounds that the family lived within a walking distance of 3 miles and there were no exceptional circumstances to justify a departure from the Council’s policy.

Samantha appealed, but the Council stood by its original decision. Samantha then contacted the Legal Entitlements Research Project for help with preparing for a further appeal to the Council’s Panel.

We looked at her case and provided some advice about the Council’s duties. We explained that the Council owed a duty to provide transport to other categories of ‘eligible’ children, in addition to those who lived more than 3 miles from the school. These included pupils who couldn’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.

We were delighted when Samantha told us that the Council had contacted her before the date of the Panel meeting and overturned its previous decision. The Council reinstated Kelsey’s transport, updated the information on its website and arranged for a Lead Officer from the Disability Team to oversee transport decisions to avoid any repeat occurrences.

Samantha was keen to share the good news with other families who might find themselves in a similar situation:

“The advice and support I received from you & the Cardiff team and also the moral support from the Chair of the local branch of the DSA were the things that kept me going. The legal advice your team gave me made me determined to keep fighting for what Kelsey is entitled to.

My family is so very grateful and Kelsey is so excited about going to school on the ‘big bus’ (as he calls it)! It is easy to ignore how important it is for children with disabilities to be able to have a little independence in their lives and, at 14 years old, as Kelsey is now, travelling to school with his peers, rather than being taken by his parents is such a great thing for him. He’s so proud to get on and off that bus by himself.”

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.

Research Conference Review

conferenceOn 7th October 2014 Cerebra held its Annual Conference at the Royal Society of Medicine in London. The conference looked at different ways to solve the problems faced by families in accessing services and support for children with complex needs.

The key message for the Conference was to look at practicable ways forward for service users to access services, as continual evidence and research shows that people face constant difficulties with this. Cerebra’s aim is not to make changes to the law but to look at ways of ensuring that service providers implement the law as it stands. Hopefully delegates feel that they enhanced their knowledge and understanding by attending our Conference.

With the exceptionally high calibre of speakers and the variety of topics covered the content proved to be informative to both professionals and parents/carers alike. All of the speeches were videoed on the day and will be available on our website soon.

The first section of the programme was entitled ‘Common problems faced by families of disabled children’. This part looked at the research that is being conducted by Cerebra’s Academic Chairs relating to studies into the experiences encountered by families in challenging services, the impact of socio-economic influences on disabled families and looking at the responses and strategies in meeting the needs of children with severe intellectual disabilities. The speakers included:

Professor Chris Oliver (Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham)

Professor Richard Hastings (Centre for Educational Development, Appraisal and Research, University of Warwick)

Dr Janet Read and Dr Clare Blackburn (Warwick Medical School)

Alison Thompson, a parent, who gave a powerful and very moving speech relating to her experiences of dealing with different service providers as a mother of child diagnosed with ADHD. You can read her presentation here.

After an amazing lunch, the second section of the programme related to ‘Moving Forward’. Here Cerebra was extremely lucky to secure as speakers:

Dr Maggie Atkinson, the Children’s Commissioner for England whose speech was aptly titled ‘We want to help people see things our way’. After having spoken to numerous disabled children, she urged the audience of the need to look past their disabilities and see them as wanting to be treated as every other teenager.

Nigel Ellis, Executive Director, Local Government Ombudsmen. He gave the audience examples of complaints that had been made to him that related to the failure of local authorities to provide children with the necessary services, of which education made up the largest area of complaints.

The final section of the day ‘Problem Solving’ comprised of talks given by:

Polly Sweeney who is an Associate Solicitor at Irwin Mitchell. She gave an in depth look at Part 3 of the Children and Families Act 2014

Professor Luke Clements who is the key force in Cerebra’s Legal Entitlements Research Project. He discussed at length the focus of this project and relayed to the audience some of the legal opinions that had been produced in a Digest of Opinions that related to CAMHS, school transport and NHS services

At the end of each of the three sections conference chair, and Head of Cerebra Trustees, Professor David Rose fielded questions from the delegates which gave them the opportunity to clarify matters arising from the speeches. These questions were answered in detail and made some very complex issues clearly understandable and produced some thought provoking answers.

In addition to the talks, there were a number of exhibitors at the event who included Irwin Mitchell Solicitors, Autistica, Firefly and Wizzybugs.

Along with these there were information stands from our Academic Chairs at: University of Barcelona, University of Birmingham, University of Cardiff, University of Leeds, University of Exeter, Cerebra Innovation Centre.

Cerebra would like to thank all of the speakers and exhibitors for giving up their time to join us on the day.  We are particularly grateful to have received sponsorship from the Big Lottery Fund and Irwin Mitchell Solicitors – their support made the conference possible.

Next year’s conference has been booked for Thursday 3rd December 2015 and will be at the Royal Society of Medicine again. Further details about this event will be forthcoming shortly.

Guides for Parents

We have published a series of guides for parents on a range of topics that aim to provide lots of useful information on how to get the help and support you need. We hope that our guides will help families understand and navigate the frameworks in place to ensure that children’s education, health and social care needs are met, as well as providing advice on practical matters such as family finances.

Some of our most popular resources, according to parents who responded to a recent online survey, include the guides on Education, Parent/Carers’ rights, Money Matters and Social Care.


All children have the right to an education, but some children will need additional support to enable them to learn. Our Education guide summarises the support that might be available to your child both before s/he reaches school age and during his/her time at school. Topics include special educational needs, discrimination and school transport. We’ll shortly be publishing a new guide which explains the recent special educational needs reforms in England.

Parent / Carers’ rights

This guide explains the different sources of help available to parents in their role as carers. It explains your rights, for example, to ask for an assessment of your own needs and to have your views taken into account by the local authority when it is carrying out an assessment of your child’s needs.

Money Matters

Parents who want to know what financial help may be available to them and how to manage their children’s finances can refer to this guide for more information. It gives an overview of the main sources of financial help available for parents and for disabled young people aged 16 and over who may be entitled to help in their own right.

Social Care, Housing and Health

This guide gives information on the responsibilities of NHS bodies and local authorities to provide health and social care, as well as accommodation, for disabled children and their families.

View our full range of guides, briefings and infographics here.

We regularly review our guides to make sure they reflect the latest developments and we’re keen to hear your views about how we could improve on the layout and content to make sure our guides continue to be as relevant and useful as possible.

Do you have any views or comments about our guides? Are there any other topics that you would like us to include in our guides? If so, we’d be interested to hear from you. Please get in touch with us via the feedback forms available on our website for each guide or contact us at researchinfo@cerebra.org.uk

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.