Tag Archives: legal entitlements and problem-solving project

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.

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.

Our new Legal Entitlements Research co-ordinator

Carys Hughes, Co-ordinator for the Legal Entitlements Research Project, describes her role and explains how the Project may be able to help you.

I joined Cerebra on 7 April 2014 as the co-ordinator for the Legal Entitlements Research Project, which has been in operation since October 2013. Having qualified as a solicitor in private practice, I spent 11 years in a complaints-handling role in the public sector before joining Cerebra. I hope that my legal background, teamed with my experience in dealing with people’s concerns, will help me to contribute to the success of the Project.

The Project has evolved from a number of initiatives set up by Cerebra to inform parents of their legal rights. A series of popular Cerebra seminars, delivered by Professor Luke Clements of Cardiff University, gave rise to several ‘frequently asked questions’ and resulted in the publication of our Parent Guides, followed by a set of precedent letters which parents could adapt for their own use . Cerebra recognised that some parents might need additional support in order to access their legal rights and responded by establishing the Project, in conjunction with Cardiff University.

Law students at the University (under the supervision of qualified staff, firms of solicitors and other disability organisations) aim to provide legal support to families who are experiencing difficulties in accessing health and social care services. Part of my role as co-ordinator is to consider requests received from parents and refer appropriate cases to the University.

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 research is aimed at improving our understanding of the difficulties faced by families in accessing support services and learning how these problems can be resolved effectively. Cases referred to the scheme will provide a valuable source of information to the research team at Cardiff about the type of problems encountered by families and the effectiveness of the scheme’s interventions.

The research team will also be developing a UK wide register of support resources, comprising information about advice and support agencies which could help families secure the support services they need.

Recent successes have already been reported (Oliver’s story and Jinny’s story) and we hope to publish many more success stories as the Project progresses. If you have a legal question about your child’s access to health or social care services, please have a look at our website for further details about the scheme and contact us at probono@cerebra.org.uk

Cerebra’s Legal Entitlements Research Project – a potted history

I joined Cerebra in June 2010 as Head of Research and Education; prior to that I worked for Home-Start UK, supporting vulnerable families.  I knew there was a need for parents of disabled children to be informed about their legal rights.  With that in mind I searched for a speaker who could deliver Legal Rights seminars on Cerebra’s behalf to parents of disabled children. I found Prof Luke Clements.

The seminars were so popular we had to move to bigger venues and put on more dates.  From those seminars we collated several ‘frequently asked questions’ which led to the development of our Parents’ Guides and ‘frequently occurring problems’, which led to the development of several model letters (Precedent letters) that parents can use to tackle problems they are encountering.

Now, both the Parents’ Guides and the model letters are continuously updated and added to.  While the guides and model letters worked well for many parents, it became apparent that some parents/carers needed a little more input to enable them to access their legal rights. So we established the Cerebra Legal Entitlements Research Project at Cardiff Law School.

The aims of the programme are:-

  1. To provide support for disabled children, their families and advisers, who are encountering difficulties with the statutory agencies in relation to the provision of health and social care;
  2. To identify why problems occur concerning the discharge by public bodies of their statutory functions;
  3. To identify accessible and effective procedures that enable disabled children and their families to maximise the benefits of their legal entitlements; and
  4. To identify effective ways by which legal entitlements can be delivered to disabled children and their families.

The programme, under the direction of Hannah Walsh from Cardiff Law School, became operational in October 2013. Cardiff University law students are the programme’s advisers. Their role is to personalise the model letters in such a way as to address the problems encountered by the parents, with the aim of leading to its speedy resolution. This work is supervised by qualified staff as well as by firms of solicitors providing pro bono support for the scheme.  The programme is already enjoying successes, two of which; Oliver’s story and Jinny’s story; have been reported on.

From 1st January 2014 Cerebra expanded on this work by supporting a six year research project at Cardiff University with Prof Luke Clements as our Academic Chair. We are now looking for someone to take up a funded PhD studentship in Social Care Law at Cardiff Law School. The studentship will commence in September 2014 and this link – http://courses.cardiff.ac.uk/funding/R2236.html – gives more details on the research opportunity and the application process. Please share this with anyone you know who may be interested; we want to encourage as wide as possible dissemination of this opportunity.

Future Plans:

On 7th April Carys Hughes joined our Cerebra team and will be leading on Cerebra’s Legal Entitlements Research Project.  A qualified solicitor, Carys has a wealth of experience that will be very beneficial to this project. I’m sure she’ll introduce herself in the future.

In October the Cerebra annual conference theme is Problem solving’: accessing decent services and support for children with complex needs and their families. We have 50 places available at a much reduced rate of £15 for parents of children with a neurological condition, or young people themselves with a neurological condition.

Looking forward, we are hoping to expand the Legal Entitlements Project to other University law schools thereby growing the legal support that is available to disabled children and their families.

Tracy Elliott

Head of Research

Another success for Legal Entitlements Project

Cerebra’s Legal Entitlements Research Project has provided advice on the reassessment of continence services for a little girl with cerebral palsy.

We were recently contacted by the mother of an eight year old girl, Jinny*, who has quadriplegic cerebral palsy. Jinny had previously been assessed as requiring five continence pads each day. Jinny’s mother, Mandy*, explained that she was concerned how the review of continence needs was being conducted.

A local NHS body had asked for Jinny’s continence needs to be reassessed, stipulating that this must take place over a three day period for fluid and a two week period for stools. Because the assessment had to be completed within four weeks, part of the assessment would have had to be undertaken while Jinny was at school. Mandy was worried about the assessment having to take place during term time. She was concerned that Jinny would be embarrassed and stigmatised if the assessment took place at school. In fact, she was considering withdrawing Jinny from school for two weeks in order to carry out the assessment at home.

Mandy was also worried because the NHS body wrote to her stating that if the reassessment was not undertaken within the specified timetable, there may be a delay in the delivery of continence products. Going further than this, an NHS employee told Mandy in a telephone conversation that if the assessment was not carried out in the stipulated time period, the continence supplies would be stopped. This was despite the fact that Jinny’s community nurse was willing to confirm that Jinny still needed the continence products.

After Mandy contacted Cerebra, a referral was made to the Cerebra Legal Entitlements Research Project at Cardiff Law School. Under this scheme, law students, under the supervision of academic staff and qualified solicitors, research relevant areas of the law and offer guidance for families who are not receiving their legal entitlements.

Mandy was advised that several legal issues had been identified. The main legal points were that:-

  • NHS bodies have a duty, under section 2 of the Health Act 2009, to take into account the individual needs of patients and to ensure that policies do not discriminate against patients, even inadvertently.
  • The National Institute for Health and Clinical Excellence (NICE) guidelines on paediatric continence services emphasise that treatment should be adapted to the needs and circumstances of children and their families; the views of children and their families should be taken into account; that continence problems can lead to bullying; and reducing unnecessary invasive examinations and procedures is a key clinical issue.
  • Department of Health good practice guidance advises that children should not be excluded from school activities due to incontinence and children’s dignity and independence should be protected through the implementation of appropriate systems of care which also avoid the risk of bullying.
  • Under the Equality Act 2010, it is unlawful discrimination to have a policy that disadvantages a disabled child and there is a duty to make reasonable adjustments for disabled people
  • Under the European Convention on Human Rights 1998, it is unlawful to fail to provide timely health support to a disabled child and to threaten its withdrawal.

Cardiff Law School sent its legal opinion to Mandy. This explained the legal points outlined above and highlighted that the way in which the NHS body had approached the review of Jinny’s continence services had fallen short of its public law obligations and that it had acted unreasonably. It also pointed out that it would be unlikely for the continence needs of an eight year old girl with quadriplegic cerebral palsy to diminish over time. The opinion concluded that:

“one would hope that the NHS body would undertake a fundamental review of the implementation of the policy and in the instant case demonstrate considerably greater flexibility (for example by allowing the assessment to be undertaken during the school holidays)”.

Mandy forwarded this opinion to the relevant NHS body. This clearly had an impact as she reported back that she was able to order the next supply of continence pads without the need for the assessment to take place during term time.

Can our Legal Entitlements Project help you? Find out more here.

* names have been changed.

Legal Research Team Makes a Difference

Oliver on the busOur new Legal Entitlements Research Project at Cardiff Law School is already making a difference to families.

Oliver is a 10 year old boy with Down’s syndrome and severe learning difficulties. Oliver’s parents were struggling to get transport for their son to his new school as they live in a rural area, 1.8 miles from the school. Their local authority applies a policy that all children who live less than 3 miles away from their school will not be eligible for funded travel by the local authority. But the route Oliver needed to take was unsafe. It involved walking through lanes which in some sections were single track with no passing places or lay-bys, a lack of street lighting and formal pavements, and the surface was in poor condition with many potholes.

Oliver and his parents had to cope with high volume traffic at peak times which would coincide with times when lighting was poor. Oliver’s disability also makes him prone to running off, becoming easily distracted, especially by potholes, and becoming distressed by loud noises. Oliver also has a brother who attends a different school in the opposite direction and taking both children at the same time would cause considerable distress to Oliver due to his past association with the school. Despite many attempts at trying to resolve the issue themselves with supporting letters from Oliver’s GP, social worker, paediatrician, his old school and his learning disability nurse, their applications and appeals continued to be turned down. This is when they decided to contact Cerebra’s Legal Entitlements Research Project.

The opinion of the team working on the Project was that the local authority had acted unreasonably in requiring Oliver to walk the prescribed route to and from school and had failed to consider the impact of his disability. The local authority had not acted in compliance with its obligations towards disabled children under the Equality Act 2010. The local authority had also applied a blanket policy and not considered the impact of Oliver’s disability on his ability to walk to school.

“We are delighted with the outcome of Oliver’s case and know that the provision of transport to and from school will make a huge difference to him and his family. The students worked extremely hard and are thrilled that their work has had such a positive impact. They were very touched that Oliver’s mum sent a photograph of Oliver on the school bus and this made their work feel even more personal” – Hannah Walsh, Cardiff Law School.

As a result of the letter written for the family by Professor Luke Clements and his team, the LEA has agreed to provide transport for Oliver to and from school. Oliver’s mum has shared a photograph with us of a happy little boy travelling to school safely.

With huge thanks to Cerebra and Cardiff Law School, Oliver has been going on the bus to and from school for just over a month now. Oliver loves going on the bus and this means he arrives at school much calmer and less stressed than he would if he walked. We were given excellent legal advice and access to a specialist in school transportation; this allowed us to present a much stronger case that resulted in success following our own previously unsuccessful application and appeals” – Oliver’s parents.

Public bodies in the UK have certain duties to provide health and social care support for disabled children. Sometimes, however, families experience difficulties accessing these rights. The series of ‘rights’ advice guides commissioned by Cerebra, are designed to help families who are experiencing problems with statutory agencies, such as social services and the NHS.

If you need additional support, the Cerebra Legal Entitlements Research Project may be able to help. The programme, which is free for families, enables Cardiff University law students (supervised by qualified staff, firms of solicitors and other disability organisations) to assist families who are experiencing a problem with their local health or social care services.

Find out more about Cerebra’s Legal Entitlements Research Project.