Tag Archives: legal entitlements and problem-solving project

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.

Cerebra’s Legal Advice Research Project

cardiff university logoPublic bodies in the UK have certain duties to provide health and social care support for disabled children. The research evidence suggests that disabled children and their families experience considerable difficulties in accessing these rights.

It is against this background that Cerebra’s research programme has been established at Cardiff Law School. Lizi Azadegan, from the Cardiff School of Journalism, tells us how the scheme is also benefiting students at the University.

“The programme established at Cardiff University Law School, with funding and technical support from Cerebra, is a service designed to provide legal guidance to the families and carers of disabled children. The programme offers free legal advice when families experience difficulties accessing their rights to healthcare and social care services. Research by Cerebra found parents and advisers are often in need of legal support when dealing with the statutory agencies.

The law students acting in the scheme provide legal guidance and advice under the supervision of qualified staff, firms of solicitors and other disability organisations. It targets a very niche group whose issues are very specific and complex.

Students have the opportunity to identify accessible and effective procedures and these enable disabled children and their families to maximise the benefits of their legal entitlements. The programme works alongside a number of national solicitors and barristers practices who assist with the drafting of legal advice documents that parents can refer to when dealing with local authorities.

Kate Millar, who is an undergraduate law student, has been involved in the scheme since it started in September 2013. She has seen the programme develop and speaks very positively about it: “Families can get legal advice which they might not have been able to access via other means due to finances. The programme means we can offer specific legal advice for their child’s particular case and cater for the complexities of each individual case”.

All the students praise the scheme and feel it is a much needed service, given the current social and economic climate. “With the government service cuts, it is important that the people who are affected have the means to challenge services they are being refused and that these families are in need of” (Olly, postgraduate law student).

The outcome of the programme means families attain well-rounded and specific legal opinions, while students are able to learn about how to meets clients’ needs and service the community. Kate Millar said, “As a student, you don’t always have an opportunity to use the skills you have to participate in society. The scheme is great as it not only provides a practical element to our legal studies, but it gives us the chance to support the community and use our professional skills to give something back to society”.

Other students on the programme are equally positive: “It feels great to be able to apply what we learn in Law School to day-to-day activities. It gives us students the opportunity to apply legislation to a worthwhile cause and give help to someone to who doesn’t have that knowledge…the scheme helps students to engage with the fun side of law which can sometimes appear quite boring”.

“A lot of effort and planning goes into each case and producing each legal opinion draft. The final result is very rewarding for Cardiff Law School, the programme and the parents”.

“We’ve got a great team and the diversity of its members gives us a well-rounded team. Our mentor, Luke Clements, is not only an expert in his area, but a great teacher, helping support our learning and development”.