Child of Courage

Josh113 year old Joshua Nurse has been nominated for a Child of Courage award.

We are thrilled that Josh has been nominated for the Child of Courage Award as part of the Carmarthen Journal’s annual Community Hero Awards. The winner will be announced at a ceremony on 26th September 2014.

Josh was born with a condition called Agenesis of the Corpus Callosum, a rare condition.  It means that Josh is missing all the connective tissue that links the right and left hemispheres of his brain, which has resulted in Josh having severe learning disabilities.  He has poor concentration and can be easily distracted, has problems with balance that can often make him sick and, as he’s gotten older, has developed more severe autistic tendencies.

It took a long time before it was recognised that Josh had a problem, but when Josh was finally diagnosed his parents didn’t know where to turn – “Eventually the doctor said ‘your child will be severely disabled.  We came out of the hospital in one hell of a state. But we learned very quickly that we had to cope somehow.”

Josh’s family got in touch with Cerebra and we’ve been there for the Nurse family throughout Josh’s life with advice, support and information. Our grants scheme helped to pay for special sensory toys for Josh to aid and improve his development as well as a touch screen computer; the family have also stayed at our holiday home, Vallecchia, in Pembrokeshire.

Josh has also been a great help to the charity when we’ve needed him – he has drawn the winning tickets in our summer and winter raffles, presented cheques to our lottery winners and posed for photos for charity publicity. Some of you may recognise Josh who helped us celebrate our 10th birthday a few years ago. He is such a pleasure to be with and he has touched the hearts of everyone who has met him.

Josh’s mum Julie and dad Darriel, as well as the rest of the family, have worked hard to give Josh a full and rewarding life and Josh is a credit to them. Josh needs to be kept active and to have a routine that he is familiar with and has a team of people who help do just that – through school, support groups and respite care.

Although he’s limited with what exercise he can do, he enjoys being in the water and is a keen member of the Salmon Club. Josh loves music – especially dance music – and sings and dances to Calvin Harris in his room. He also gets the chance to dance at a Zumba class through school.

Josh has a great fascination with technology and likes nothing better than spending time looking at equipment in Curry’s/PC World. The staff in the Carmarthen branch have got to know Josh and earlier this year took the casing off a washing machine and covered the workings with Perspex so that Josh could spend a happy few hours working out where all the wires and pipes went!

Life has been even more tough for Josh in recent times as his mum and dad have both battled with ill health. Darriel has endured 5 spinal operation, which have all failed, leaving him in continuous pain and his mum Julie has been receiving treatment for a brain tumour. On top of this Josh is making the difficult transition to teenage years and secondary school, where he has settled in well.

All of these circumstances and uncertainties would be difficult for any child but for Josh, who relies on routine and stability, it has been extra hard. He is a sensitive, loving boy who is coping really well and is determined to enjoy his life despite his difficulties.

The whole family are a pleasure to know and everyone at Cerebra is is so proud of Josh who shows such great courage in overcoming the problems that he faces. We are keeping our fingers crossed for Josh at  the ceremony on Friday – we’ll let you know how he gets on.

Minimising the effects of additional learning needs: Part 1

education1
The first in a four part series discussing parents’ common worries about education with special or additional needs.

Much is written about systems for identifying and meeting the educational needs of children with the most severe disabilities and learning difficulties, particularly at the moment with the new system in England.

However, many more children have additional / special educational needs without being at the greatest / most complex level calling for a Statement, Education Health and Care Plan (new, in England) or Co-ordinated Support plan (in Scotland).  This is the first in a series of articles about the support for this larger group of children. Each article will deal with a common worry parents have about their child’s education when they have special or additional needs.

Q.  “If they are not at the greatest level, will my child’s additional needs be met at school”

A.  It is true that in many ways, schools deal with special / additional needs informally.  However the legislation, guidance and codes of practice cover all children with additional learning needs and not only those needing the most concentrated levels of support.  Educational codes of practice are devolved, so that each area of the UK now follows a different code, but the principles followed in each one are similar.

England now has the SEND code of practice 2014, under which children not needing the most concentrated level are given “Settings-based SEN Support”. Under SEND, compared with the previous code in England, there is more of a continuum with the approach that is expected for all children, to identify and deal with anything that is reducing their potential benefit from education.  SEN Support also now applies to young people aged 16-25 and can begin, theoretically, at age 0.  The statutory guidance states the following, and this includes children who are currently on “Action” or “Action Plus” levels of support:  “The legal definition of SEN has not changed so that no child or young person should lose their support simply because the system is changing.  Special educational provision should continue for children and young people who need it because they need educational provision that is additional to or different from, that made generally for others of the same age in mainstream settings. It may change only if:

  • a child or young person’s learning needs have changed, or
  • the educational setting has changed its universal offer” (Dept for Education, 2014).

Parents of children needing Settings-based SEN Support should be involved in “regular review and discussion” of their child’s progress.  The class teacher is a key person in identifying and supporting children at this level, and the Special Educational Needs Coordinator (SENCO) remains another point of contact for parents.  Whereas, for some children, the changeover from Statements (under the previous code) to EHC Plans (under this code) may take until 2018, the changeover from Action and Action Plus to SEN Support is expected to be achieved by September 2015.  Sections 8.5 onwards of the statutory guidelines (Dept for Education, 2014) describe how a similar system now has to be introduced into post-16 institutions as well.  The complete timetable is in Annex A of the guidelines.

education2The approach to learning needs at every level is described in the new code as a graduated and continuous process of “assess, plan, do, review”.

Each local authority in England publishes a “local offer” describing what SEND-related services are available in the area and how to access them.  At the time of writing, these offers are in a state of transition to the new system.  Some currently mention assessment for EHC Plans without mentioning Settings-based SEN Support, however as above, both are part of the new system.  Each school also has a special educational needs policy / “school offer”.

The new code suggests to me that potentially, there could also be more integration with non-educational services for children receiving Settings-based SEN Support, though not in the same manner as for those with EHC Plans.

In Scotland, the Code of Practice is “Supporting Children’s Learning” (2010), which applies between ages 3 and 18 years.  In this there is a staged approach to additional needs, moving through the support types and levels that might be required in response to concerns expressed by parents, teachers or others, broadly considering first the least extra support that might be needed.  Only some pupils with additional needs will prove to be at the level where a formal Co-ordinated Support Plan (which was the successor to a “Record of Needs”) is required, but this methodology should also identify and seek to meet the needs of the others.  Local authorities go into more detail for parents, for example the Children In the Highlands Information Point, http://www.chipplus.org.uk/index.asp?pageid=331378.  Scotland also has the concept of the Universal Child’s Plan, which is triggered when a child’s learning needs demand more than ordinary classroom teaching techniques (which do encompass additional needs to some extent), so that other services and an Individualised Education Programme (IEP) become involved.

Northern Ireland has the Code of Practice on the Identification and Assessment of Special Educational Needs (which also includes instructions for provision.  Dept of Education, Northern Ireland, 1998-2005).  Northern Ireland and Wales still use the three-level system of Action, Action Plus and Statementing levels of support.

The equivalent code in Wales (Welsh Assembly Government, 2004) approaches assessment and provision along similar lines, described as a “graduated response”, also like the other codes, stressing that any difficulties the child has should be picked up early.  The codes describe when Action and Action Plus are applicable and how assessment, provision etc. should occur, and they apply between the age of 3 years (and the time leading up to that), and an age between 16 and 19+ years.  Anyone with concerns about what provision should be made for a child can find useful details in the sections of these two codes and their associated documents relating to the applicable age-range (early years, primary school age or secondary school age.  There are also sections on transition from school age).

In all parts of the UK, there are local authority / board SEN specialists who can be called upon by schools to assist in respect of identification and provision.

Where there has always been a grey area, is in defining what are “significant” learning needs.  To many parents any learning need, or barrier to learning is “significant”, whereas there are schools and/or individual teachers who consider there are “no problems” beyond a threshold that is not necessarily defined.  For children, consistent difficulties and fallings behind can lead to frustration, lowered self-esteem, further educational difficulties and relationship issues with peers, however educationalists expect children to learn at different speeds and to have different learning styles, strengths and weaknesses, so when does this become “significant”?  In principle, the statutory codes and guidelines would seem to agree that any learning need should be picked up and supported as early as possible, yet they still use the term “significant” in some places.  In Scotland, the code and guidance include a discussion of the term in the light of Tribunal and Court decisions, and gives some examples (Scottish Government, 2010).

References

Code of practice on the identification and assessment of special educational needs, and supplement (1998-2005), (Dept of Education, Northern Ireland).

Dept for Education (2014, England), Transition to the new 0 to 25 special educational needs and disability system. Statutory guidance for local authorities and organisations providing services to children and young people with SEN.

SEND code of practice: 0 to 25 years (2014), (Dept for Education and Dept of Health, England).

Special educational needs code of practice for Wales (2004), (Welsh Assembly Government).

Supporting children’s learning (2010, revised edition), Scottish Government.

Books in the library covering special needs in general

library-booksThese books don’t quite fit into any of the specific categories based on diagnoses, so they are listed in the section of the library list called ‘Learning Disabilities and Special Needs in general’.
There are some pretty good books amongst them, which you might not come across when you are looking in for books in the other sections

  • L6198  When the Bough Breaks: a mother’s story by Julia Hollander
  • L6213  Special Educational Needs Inclusion and Diversity by Norah Frederickson
  • L6245  Children with Complex and Continuing Health Needs: experiences of children families and care staff by Jacqui Hewitt-Taylor
  • L6249  Is That My Child? Exploding myths of dyspraxia, dysplexia, tourette syndrome of childhood, ADD, ADHD and OCD by Robin Pauc
  • L6257  Mothering Special Needs: a different maternal journey by Anna Karin Kingston
  • L6276  Understanding Your Special Needs Grandchild by Clare Jones
  • L6278  A Practical Guide to Equal Opportunities by Hyacinth Malik
  • L6314  Building a Joyful Life with your Child who has special needs by Nancy Whiteman
  • L6372  Disabled Children Living Away From Home in Foster Care and Residential Settings by Claire Burns
  • L6488  If Only I’d Known That a Year Ago by RADAR
  • L6493  Letters to the Home Front: positive thoughts and ideas for parents bringing up children with developmental disabilities by John Clements
  • L6500  Chicken Soup for the Soul: children with special needs by Jack Canfield
  • L6535  Special Educational Needs: a parents’ guide by Antonia Chitty
  • L6536  Personalisation in Practice: supporting young people with disabilities through the transition to adulthood
  • L6537  Identifying Special Needs: a checklist for profiling individual differences
  • L6555  Different Dads: father’s stories of parenting disabled children

For more information on our library and to download a full library list please see our library pages.

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