Category Archives: Practical Help

Books in the library especially for kids

kids-booksCerebra has a large selection of books in our postal lending library for children and their siblings to read to help them understand their disability.

Listed below are of some of the more popular books. This month we are featuring books for younger children and next month we will be featuring books for older children.

You can borrow the children’s books on behalf of your child, as with the sensory toys. Sorry, but children can’t be library members themselves.

The full list of children’s books in our library can be found at on our library pages.

Disability info for younger children:

C0111 – Looking After Louis (autism)
C0129 – Don’t Call Me Special (special needs)
C0134 – Do I Have to go to Hospital
C0136 – Victoria’s Day (Down Syndrome)
C0144 – My Friend Has Down Syndrome
C0161 – The Brave Soul’s Club (dealing with serious illness)
C0168 – Kevin Thinks (Aspergers)
C0210 – My Autism Book
Fiction for younger kids:

C0098 – Susan Laughs (being in a wheelchair)
C0040 – Andy and His Yellow Frisbee (autism)
C0058 – Spark’s Excellent Misadventures (adhd)
C0128 – Just Because (siblings)
C0150 – Ian’s Walk (autism)
C0156 – Sometimes (staying in hospital)
Signing, Makaton & PECS:

C0023 – Sign & Singalong Twinkle Twinkle Little Star
C0024 – Sign & Singalong Baa Baa Black Sheep
L6161 – Learn to Sign with Olli (BSL)
C0162 – My First Makaton Book of Colours
C0163 – My First Makaton Symbols and Signs – book 1
C0164 – My First Makaton Symbols and Signs – book 2
C0165 – My First Makaton Symbols and Signs – book 3
C0177 – My Makaton Book of Nursery Rhymes
AV6392 – Makaton Nursery Rhymes (dvd)
C0208 – PECS Cards Keyrings – Feelings and Emotions and Instructions and Behaviour
Activity books and CDs:

C0108 – The Animal Boogie (book and CD)
AV6520 – Motor Skill Activity Fun (CD)
AV6521 – Tuned in to Learning for Students with Multiple Disability (CD)
Sound books:

C0187 – What’s That Noise Spot
C0188 – Room on the Broom
Touchy Feely books:

C0185 – That’s Not My Mermaid
C0186 – That’s Not My Dragon
Behaviour:

C0157 – A Volcano in my Tummy (anger)
C0176 – The Red Beast (anger and Aspergers)
C0184 – Ellie Bean Drama Queen (sensory processing disorder)
C0151 – Don’t Behave Like You Live in a Cave
C0166 – What to do When you Dread your Bed (sleep)
C0211 – The Disappointment Dragon (Aspergers)
C0212 – The Panicosaurus (Aspergers)
Bereavement:

C0118 – The Lonely Tree
Books for siblings:

C0039 – My Brother Matthew (disability)
C0077 – My Brother is Different (autism)
C0160 – My Brother s Autistic
C0183 – Our Brother Has Down Syndrome
C0206 – Babies are Noisy (autism)
Next month… look out for our list of books for older children!

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

Autism at school: seven questions for parents

autismatschools2We are pleased to share a short article written for parents by Prof Richard Hastings (Cerebra Chair of Family Research at Warwick University) about autism and school.

The article is an attempt by Richard to make more accessible the sorts of questions that are important when considering whether school based interventions/supports are suitable for children and young people with SEN, autism and intellectual disability.

Richard suggests that the questions parents should ask are:

  • What are the needs of my child and my family at this time?
  • How will the intervention suggested address these needs?
  • How is the intervention meant to work?
  • Has the intervention been fully described and written down?
  • Is there evidence the intervention is effective?
  • Is there any evidence the intervention is effective in the real world?
  • Will the school be able to show you whether the intervention is working for your child?

To read the article please click here.

We would add one further question to the seven suggested by Richard and that concerns information sharing and communication between the school and other agencies (health, social care) that may be involved in the child/young person’s overall support.  Its important that the overall package of support ‘fits’ together.  So parents need to question this and how communication between the school and these other agencies is going to be managed.

Additionally you might like to look at the ‘What’s the Evidence’ summaries written by another Cerebra centre, PenCRU, and also Cerebra’s Guide on Decision making, Confidentiality and Sharing Information. 

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”.