Author Archives: Carys Hughes

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

Kelsey

Kelsey

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.

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.

Education

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

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