Author Archives: Sarah Jones

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.

CIC reviews CAPR-Style clothes

bodyvestWe were recently made aware of a lovely company called CAPR-Style who make awesome fashionable clothes for kids and young adults.

Not only have their clothes been designed to fit appropriately, but they are really cool looking and functional too. Ross Lindsay very kindly sent us some trial outfits and the CIC team were really impressed with the build quality, the softness of the fabrics and how they had managed to get such functionality into such cool looking clothes.

Claudia Romero, the founder of CAPR-Style set up the company after finding it increasingly tough to find clothes for her own son. She says:

All our products are designed specifically for people with severe disabilities and also for wheelchair users and those with incontinence problems. The main users are those who have: limited range of motion and impaired dexterity, motor neuron disease, muscular dystrophy, spinal injury, cerebral palsy, multiple sclerosis, stroke, hemiplegia, rigidity, developmental disabilities, toileting/changing needs, G-tube feeding, catheters and colostomy bags and IV tubes. All the final adjustments to our products can be customize to personal needs (i.e. T-shirts with access to PEG tube or length of legs).”

As one small example from their extensive range, they supply the “Merrick Style Body Vest” with a super cool Little Monster Pattern. This is a one piece body vest with attached shorts which would be very versatile for playing or sleeping.

An opening at the crotch helps with dressing and helps secure any nappies or pads that are worn. To aid dressing the left shoulder or both shoulders of the body vest can be made to open and be secured with snap fasteners. The opening means the body vest can easily be placed over the head and then secured in place without having to thread arms into place. CAPR-Style even offer an additional service to include PEG-JEJ tube openings with covers.

Other clothing items offered are trousers with Velcro seams to aid dressing, long and short sleeve t-shirts and the range is constantly evolving. They cater for girls and boys from 3 years old into young adulthood. Excitingly they are planning to add skirts, jumpers and jacket to their range very soon. Keep in touch via CAPR-Style’s Facebook page for more information.

Based in Edinburgh, CAPR-Style are very proud that all of their clothing is produced in Scotland to a very high standard at very reasonable prices, with all their materials sourced from the UK.

For further information the contact details are: info@capr-style.com or 07804 512 186 and the website is: www.capr-style.com.

JLA childhood neurodisability research priorities – Top 10 published!

The James Lind Alliance

The James Lind Alliance

The James Lind Alliance (JLA) research priority setting partnership publishes its top 10 research questions that still need to be answered on the effectiveness of interventions for childhood neurodisability.

The aim of the James Lind Alliance Childhood Disability Research Priority Setting Partnership was to identify and prioritise unanswered questions about the effectiveness of interventions for children and young people with neurodisability from patient, carer and clinical perspectives.

Suggestions were gathered in an open survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were unanswered. The topics were initially prioritised in a vote with stakeholders, and then discussed at a workshop by young people, parent carers and clinicians.

The final prioritisation workshop was held on 5 June 2014 at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England.

There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities (including Cerebra), a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon). Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The Steering Group will meet again in September to review progress with our dissemination strategy.

To find out more about the work and all the topics considered and prioritised, please visit:

http://www.bacdis.org.uk/research/psp.htm

Difficulty Sleeping Alone or Night Waking

Our useful checklist gives tips for what you can do it your child is finding it difficult tbig-yawno sleep alone or waking up in the night.

If your child is waking in the night or finding it difficult to sleep by themselves, have you considered or are you already doing the following?

  • Does your child have a comforter?
  • Have a picture of you near by?
  • Are you being consistent every night?
  • Is your child falling asleep without milk/a dummy/ a tv on?
  • Is the environment staying the same (e.g. if a light is on when they fall asleep, does it stay on throughout the night?
  • Using a reward scheme
  • The gradual withdrawal technique (slowly moving away form your child over a period of time)
  • Being a Robotic parent once the light goes out and avoiding interaction
  • Leaving a night light on
  • Leaving the bedroom door open slightly
  • Talking to your child about their fears ( not just before bedtime)
  • Is everyone that is involved in the bedtime routine doing the same thing?
  • Is your child in pain?
  • Is your child waking due to noise?
  • Is your child waking due to it being cold?

 Download this checklist as a PDF

Cerebra’s sleep practitioners can advise on a range of sleep issues in children, such as settling difficulty, night waking, early rising, sleeping alone, bedwetting, night terrors and anxiety. Visit our sleep pages to find out more.

Positive stories about autism

Melanie Cosgrave and her childrenDo you have a positive story about someone you know with autism?

My name is Melanie Cosgrave and I am 43 years old.  I am married and have three children, two girls and a boy.  I used to be a primary school teacher and loved working with children.  When I had my children I decided to have a career break but have yet to go back.  I am lucky that I live in a nice quiet village in the North of England.

I have two children on the autistic spectrum, both at the opposite ends so I have had a very sharp learning curve to learn all I can about all aspects of autism.  My daughter is high functioning Aspergers and I am constantly amazed at her capacity for knowledge while totally struggling with the social side of life.  My son who will be ten this year ( I can’t believe it) is severly autistic, struggling to communicate and has very limited speech and attends a special school.

Over the years I have collected and read many books that have helped me and my family on our journey.  My first and one of my favourites being ‘Ten Things Every Child With Autism Wishes You Knew’ by Ellen Notbolm and also ‘The Autism Revolution’ by Martha Herbert.  There are so many books out there to give information and to help educate and for a while I have been thinking about the kind of book I would like to read but haven’t found.

Sometimes there are days that seem tough and that’s when I thought I would like to read a light hearted book filled with positive short stories about autistic people.  Something that is easy to pick up and you don’t have to be thinking too hard about.  A book that family and friends could buy to help someone they know who may just have had a diagnosis in the family, or that grandparents can pick up for a bit of reassurance.  So I thought that I would try and write that book.

So I would love to  hear from anyone who is on the autistic spectrum or has a family member or friend that you have a positive story about.  It can be a funny story or kind or happy, just something positive.  And it needs to be short.  If you could send your story to  autism.positive@btinternet.com that would be great.

Thanks very much.

Melanie Cosgrave

CIC News – June 2014

We catch up with the guys at the CIC and find out what they’ve been up to lately.

CIC have been busy designing and building products to help our young members and their families as usual! The requests for design challenges have been coming in steadily but there is always room for more! If there is anything we can help you with, please feel free to give us a call. Remember that we are here to help with anything product related, for example we could help source products, or if you have an idea for a solution that could help your child we should be able to design and make something…..and if you simply have a problem with no idea for a solution…those are the ones we love the best- give us a call or drop us a line and we will rise to the challenge!

Here are a few recent examples of products that we have been working on.

Weighted Capscic-cap
CIC helped with a couple of recent requests for weighted caps to help with Tourettes and Autism. The families kindly supplied hats that had been tried for size and were the correct style and brand (very important consideration for our young members!) and CIC used their carefully developed method of making very slim flexible weighted pads to fit into the hats. From the outside you would never know there is any difference in the hat, but the resultant behavioural changes appear to be fantastic!

“Hi Ross, just to let you know Jamie’s hats arrived yesterday. He is so happy with them. He wore his blue one in class today and he said it helps him concentrate. He is feeling a lot happier in himself. Thank you so much for taking the time to make them. Jamie will be sending you a card this week, thanks again D”

An extra tall baby-gate
This request was for a stylish gate that would enable Mum, Sinead, to know that her son is safe and well inside his room and so removing the risk of him getting to the stairs, whilst still being able to see each other through and decorated with Ben 10 images. As usual, the gate had to fit the style of the house and not have a negative impact on the environment or look too restrictive. We decided on a simple form with a curved top to break up the shape and then found some lovely images of Harvey’s favourite TV character.

“Hello I received the gate and it is wonderful I cannot thank you enough also Harvey loves it with the ben10 stickers thank you very much for your time and effort. I have made a donation to cerebra thank you again x S”

CIC writing clopeThe CIC Writing Slope
Something that we have been working very hard on recently is the design of our new writing slope. You may remember that we told you about one that we had made for a young lady last year, and from the response to that story we have now made another 30 units! The writing slope is made so that it can help children with writing and reading by helping to hold the paper and books steady and in a useful position. It has many innovative features such as: Adjustable angle controlled with a gas spring, a pen holder which negates the use of pen lids, magnetic reading and writing ledges and a carry handle.

Here is some of the feedback we have had so far:cic-writing-slope

“Thank you so much for Jack’s writing table, it is brilliant. I will get a donation sent to you and also a photo!”

“I am so very grateful for the beautifully crafted writing slope that arrived for Sim this morning! He is going to be incredibly excited when he gets home from school! Sim is 5 and a half and has Down’s Syndrome. He finds it very difficult to read books or try and draw/write when paper is placed directly on the table and we have been searching for a slope that enables him to do this, but have never managed to find one that hasn’t got a big lip, sits too close to the table, etc. The one you have made is absolutely fantastic and will be PERFECT! I love the attention to detail! The carry handle, the magnetic strips, the plastic tabs to keep books open, the pen slots, etc. Please do thank the team for all the hard work that has gone in to producing this for him. We really are immensely grateful.”

If this is of interest to you, please give us a call on 01792 483688 to discuss your requirements!

Tom’s Playring

Tom and his playring

Tom and his playring

Tom’s mum sent us a great picture of the Playring thanks to Cerebra.

The charity provided a Playring for Tom from the toy library, as well as helping them with a GoToSeat.

As you can see in their pictures, Tom loves both. He has developmental delay, but the Playring and GoToSeat help him sit up and take part in his physio to aid his development.

It also means he can join the family and enjoy shopping trips.

“He loves being in the trolley,” his mum Laura told us. “We’re so grateful to the charity.”

The GoToSeat was developed by Leckey and our Cerebra Innovation Centre. Take a look around our website to learn more.

Don’t forget that Cerebra receives no government funding – all of this is thanks to your support!

Cycle ride for Cerebra

Group from Carmarthen Town AFC getting ready to start cycle rideA group of cyclists are setting off on a cycle ride to raise money for children with neurological conditions.

The group, made up of Carmarthen Town AFC supporters and colleagues, are heading off for a 250 mile ride from North Wales to South Wales to raise money for Cerebra.

The charity has been named the Carmarthen Town AFC’s charity of the year.

Emlyn Schiavone, Phil Williams, Paul Evans, Ceri Rees, Ashley Williams, Moira Gorman and Anthony Parnell are riding in memory of Nigel Williams, former treasurer of Carmarthen Town AFC. The group holds two rides every year in his honour.

You can sponsor Anthony, Paul or Ashley through JustGiving. Cerebra receives no government funding, so every penny raised through events like this really does make a positive difference!

If you’d like to hold an event to raise money for us contact our community fundraising team by calling 01267 244 222.

Research update – June 2014

UpdatepicA selection of recent news, research, reports and events.

In the news

Autism resolution passed at WHA Research

Autism reports that in an immediate board approval, the World Health Assembly (WHA) – the decision making body of the World Health Organisation (WHO) – passed recently a resolution regarding autism, placed by Bangladesh last year. The assembly urged member states to include the needs of individuals affected by autism spectrum and other developmental disorders in policies and programmes related to child and adolescent health and development and mental health.

Autistic boys exposed to higher levels of hormones in womb, study finds

The Guardian reports that research on children in Denmark has found that boys with autism were more likely to have been exposed to higher levels of hormones in their mother’s wombs than those who developed normally. The findings add to a growing body of evidence that the biological foundations of autism are laid down well before birth and involve factors that go beyond the child’s genetic make-up. The results may help scientists to unravel some of the underlying causes of autism and explain why boys are four to five times more likely to be diagnosed with the condition, which affects around one percent of the population.

Research

Timing is everything: scientists control rapid re-wiring of brain circuits using patterned visual stimulation

In a recent study published in Science, scientists from Montreal Neurological Institute at McGill University and the McGill University Health Center show for the first time how the brain rewires and fine-tunes its connections differently depending on the relative timing of sensory stimuli. The researchers have been studying the formation of brain circuitry during development to better understand healthy brain wiring. They also hope such studies will lead to development of more effective treatments for nervous system injuries, as well as therapies for neurodevelopmental disorders such as autism and schizophrenia.

Twin study set to explore autism, attention deficit overlap

Sfari reports that a new Swedish twin study plans to search for the shared genetic and environmental origins of autism and attention deficit hyperactivity disorder (ADHD), which are often mistaken for each other. The new project aims to assess identical twin pairs using a variety of measures, including behavior and brain imaging. The researchers plan to compare the characteristics of the discordant twin pairs (meaning only one of the two has a disorder) with those of typically developing twin pairs.

Risk of brain injury is genetic

Researchers have identified a link between injury to the developing brain and common variation in genes associated with schizophrenia and the metabolism of fat. Scientists at the University of Edinburgh, Imperial College London and King’s College London studied genetic samples and MRI scans of more than 80 premature infants at the time of discharge from hospital. The study builds on previous research, and suggests that premature babies’ risk of brain injury is influenced by their genes, a study suggests. Researchers add that future studies could look at how changes in these genes may bring about this risk of – or resilience – to brain injury.

Clinical research: Angelman gene variants alter symptoms

Sfari provide a brief summary of a study published on 19 March in Research in Developmental Disabilities, which reports that the nature of the mutation that leads to Angelman syndrome, a disorder characterized by speech impairment and developmental delays, affects the disorder’s presentation.

Brain Methylation Map Published

The Scientist reports on research published on 4 July in Science that shows that epigenetic modification varies greatly over the course of development but is remarkably consistent between individuals and between mice and humans. Researchers at the Salk Institute in San Diego have made an extensive map of several types of methylation in the brains of mice and humans, hoping to understand the role of epigenetic changes in the brain as mental illnesses took hold in humans.

Reports

Sensory issues and autism: an insider’s guide

SEN provides a summary by Paul Isaacs that outlines some of the main sensory difficulties faced by people with autism and how they affect their everyday life.

Events

Towards a Positive Future

A one-day annual national conference for parents of children with special educational needs and the professionals who support them. Central London, Thursday 19th June 2014.

Engage in their future National Conference

An exceptional programme of speakers and workshops will be delivered around the theme of ‘Improving life chances for children experiencing behavioural, emotional and/or social difficulties (BESD)’. Wyboston Lakes, Cambridge, Thursday 3rd and Friday 4th July.