Author Archives: Elaine Collins

Welsh SEN ALN Reforms

The Welsh Government has been working on reforming the special educational needs system in Wales since the summer of 2007 and is now in the process of bringing in new legislation.

A Draft Additional Learning Needs and Education Tribunal Bill was published last December followed by a draft Code of Practice on February 14. The Bill itself is currently under consultation until March 3 but the Code of Practice will have its own consultation exercise later in the year.

Changes that are being proposed include:

  • Replacing the term ‘special educational needs’ with ‘additional learning needs’ (ALN) and ‘special educational provision’ with ‘additional learning provision’ (ALP) although the legal definitions behind the terms remains essentially unchanged;
  • Extending the age range from 0 – 25 to include further education colleges and specialist independent colleges (although not higher education or apprenticeships);
  • Replacing the three-tier school action/school action plus/statement system with a one tier system: any learner identified with ALN will receive a new statutory document called an Individual Development Plan (IDP) which also replaces Individual Education Plans (IEP);
  • IDPs will usually be written by schools. Only those learners with the most complex ALN will have an IDP maintained by their local authority meaning that the majority of learners with ALN will have to be assessed by their schools. If either a school or parent believes that a learner has needs requiring local authority intervention they can ask for the local authority’s support in assessing the learner’s ALN;
  • Special Educational Needs Co-ordinators (SENCos) will be known as Additional Learning Needs Co-ordinators (ALeNCOs);
  • As now, local authorities must have disagreement resolution services but will also have to “make arrangements for the provision” of independent advocacy services which will advise and assist with bringing an appeal to the Education Tribunal (which replaces the Special Educational Needs and Disability Tribunal for Wales).

Issues that have been raised so far include the lack of a national template for IDPs meaning that each school and local authority could, in theory, produce different looking IDPs; the capacity of schools and further education colleges to actually produce and maintain IDPs for all of their learners with ALN, and the costs involved. The government in England has spent over £600 million so far on its SEN reform programme which is running into difficulties. Although England has a much bigger population than Wales the financial implications of implementing the new proposals as intended could be significant.

All the relevant documents about the proposed legislation, including the draft Bill, the draft Code of Practice and the issues raised in a recent stakeholders’ event, can be found on the National Assembly for Wales website.

The National Assembly for Wales’ Research Unit has produced a useful overview of the ALN proposals with links to other useful information and details of how to get involved in the consultation on the draft Bill can be found here.

Collection Box Volunteers Needed

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Lyn Palfreyman and Betty Blyth with Box Co-ordinator Melanie Clark

Our collection boxes can be found on the counters of shops, cafes and businesses all over the country. It’s hard to believe but all that spare change really does add up.

On average our collection boxes raise an incredible £55,000 for us!  Lynn Palfreyman and Betty Blyth run a small shop on a campsite in Burton Constable in Yorkshire. They have had one of our collection boxes since 2000 and to date have collected an amazing £27,469 in spare change.

To develop our collection box scheme we are building a team of volunteers across the UK who can build contacts with local businesses in their areas and find new homes to place our boxes.

If you have some time to spare and would like to find out more, please get in touch with our Box Co-Ordinator Melanie Clark on 01267 242587 or

Every penny we raise helps families with children with a brain condition to discover a better life together. It’s an incredibly rewarding journey for everyone involved – why not be a part of it?

Can’t find a riding helmet to fit your child?

We introduce the newest member of our Innovation Centre and would love to hear from you if your child would like to try horsey activities but you can’t find a helmet to fit.

New team member

Maria Kemys

Maria Kemeys

“Hi all, my name is Maria Kemeys. I am the newest member of the CIC team as their new Business Development Officer. I am a recent graduate with a Master’s in Business Administration and have a massive passion for working with a charity who contributes to changes that impact and better a child’s life. I am delighted to have been offered the position to work alongside the team in the Cerebra Innovation Centre where innovative and life changing work is being carried out every day to help children in unique situations. I am looking forward to working as part of the CIC to develop new and existing projects for families and children, helping to them to enjoy life together.

Can’t find a riding helmet to fit your child?

Tommy Lee wearing his helmet

Tommy Lee wearing his helmet

You may remember that in 2016 we were approached by a school on behalf of young man called Tommy Lee. Tommy Lee was unable to participate in their weekly horse riding sessions as the riding centre did not have a helmet that would fit Tommy Lee’s unique head shape.

Our Innovation Team worked hard to design and make a bespoke riding helmet that meant Tommy Lee could take part in riding lessons with his friends. The helmet was not only comfortable but safe and certified by the British Standard Institute (BSI).

Thanks to a donation from Mr and Mrs Coventry at Claire’s Project our team are now able to develop more of these equestrian helmets. So if your child loves horses and would love to try equestrian hobbies but can’t participate because of the standard helmet size,  then please get in touch to find out more.

You can contact the team on or call 01792 483688

Money Matters!

Little boy counting moneyHousehold income for families with a disabled child has been shown to be around 13% lower than for those with non-disabled children. At the same time they incur higher rates of expenditure associated with disability (1).

Our aim is to equip you with the knowledge, skills and confidence you need to manage your children’s finances. Here are some of the ways we can help:

DLA Guide

If you’ve ever tried to fill in a Disability Living Allowance (DLA) Claim Form you’ll  know what a huge and daunting task it can be. Our step-by-step guide to DLA aims to make it a bit easier. The guide takes you through each question on the DLA form, explaining what it means and giving advice on how to answer correctly. It also gives you advice about how to appeal if you are unhappy with the decision. You can download the guide free of charge from our website.

Money Matters

Our Money Matters Parent Guide outlines the arrangements you may need to put in place to manage your children’s finances from age 16 into adulthood. This guide provides a summary of this complicated area through a series of questions and answers. You can download the guide free of charge from our website.

We are certified by the Information Standard, a recognised mark of quality,  which means that all of our parent guides and fact-sheets are clear, accurate, evidence based, up to date and easy to read.  You can view the full range here.


We hold Disability Living Allowance workshops around the UK where we help parents use our DLA Guide to complete the DLA form. The workshops are free for parents and carers and are held between 10am and 2pm to fit around school times.

We recently delivered a workshop to the Autism Puzzles parent group in Cardiff which parents found really useful. If any groups are interested in holding a workshop please get in touch with David Williams on All we ask is that the group provide a venue, a light lunch and promote the event. The target audience is 15-20 people.


Our Freecycle service  puts parents needing specialist equipment in touch with other parents who have good quality specialist equipment that is no longer needed. All equipment is offered free of charge. So if you have some equipment that your child has outgrown or no longer uses but still has plenty of life in it, our freecycle page can help it find a new home.

Wills and Trusts

We can support you to make provision for their child’s future by offering advice on making a will and setting up a discretionary trust. We also help families identify appropriate legal help for this.


We are able to signpost you to other charities that offer services you might need, including grants for specialist equipment. Just give us a call on our freephone helpline, 0800 328 1159, to talk about your needs.

If you’d like more information on any of the above, please contact us on 0800 328 1159 or


(1) Annual Report of the Chief Medical Officer 2012 – Our Children Deserve Better: Prevention Pays)

Cerebra’s Christmas Dash!

We recently celebrated our 15th birthday with a festive fancy dress dash in Carmarthen! We had lots of fun meeting local families and supporters who loved joining in with the Christmas fun.

There were three fancy dress races on the day starting with a Toddler Run for the little ones, a 100m Sprint for the more athletic and a Family Fun Run for everyone to get involved in. The costumes were great with some runners bedecked in tinsel, some festive superheroes and even a family of reindeer! The cast from the local panto also joined in the fun – with great rivalry between the Dame and King Rat!

The town’s Mayor, Cllr Wyn Thomas, presented prize hampers for 1st, 2nd and 3rd place in each race along with one for the best fancy dress.  The hampers were made up of goodies donated by local shops and businesses.

Families could also visit Father Christmas and his elf in his grotto and enjoy mulled wine, hot chocolate and mince pies, kindly donated by the local Co-Op store.

Our Event’s Co-ordinator, Cecilia Bufton, said: “we wanted to make this a lovely festive fun event that the whole community could get involved in, while raising awareness and funds for the great work that we do and celebrating our 15th birthday”.

We’d like to thank all the local businesses for their sponsorship and support, the Town and County Councils for their assistance, the Town Mayor for giving his time and students from the University of Wales Trinity St David for their photography skills.

Thanks to everyone who joined in the fun and made this event such a great success – we’ll see you all again next year!

Head Awareness Week 2016

Thank you to everyone who took part in our first Head Awareness Week!

We know that families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we discover together makes life better. It opens doors to discovering the world.

During our Head Awareness Week we invited everyone to get involved in our journey of discovery by wearing some sort of headwear, sharing the results on social media and making a donation.

The week was such a great success we’ll be doing it again next year so keep an eye out for details.

Go on – be head aware with us!

If you need some inspiration, here are some of the brilliant photos you shared during the week:



New look for Cerebra!

We are delighted to unveil a fresh new look for Cerebra!

Over the past year or so we’ve been taking a good look at our brand. Our brand is everything that comes to mind when people think of us. So we wanted to make sure that our brand is the best that it can be – easily recognised, easily understood and great at attracting support.

Our Vision – what we want

Our vision is that every family that includes a child with a brain condition will have the chance to discover a better life together.

Our mission – what we do

We listen to families that have children with brain conditions. We use what they tell us to inspire the best research and innovation. Then we help them put the knowledge into practice so they can discover a better life together.

Our key messages

Families where a child has a brain condition face challenges every day. Just to learn, play, make friends, enjoy and experience the world can feel difficult, even impossible. But we don’t believe there’s any challenge that can’t be overcome.

So we listen to families, we learn from them, we work with them. We carry out research, we design and innovate, we make and share. From new equipment to new learning resources, to new ways to play and support each other, everything we find out together makes life better. It opens doors to discovering the world.

It’s an incredibly rewarding journey for everyone involved. Why not be a part of it? You never know what we’ll discover together.

How we look

We have a new visual identity too – a new logo, colours, font, images which all complement our vision and our mission.

cerebra colours

You’ll notice the changes everywhere – our website, social media, in our printed materials and in the way we talk to you. It will take us a little while to make all the changes though – so please bear with us.

We are thrilled with our new look. We hope you like it too and that you’ll join us on our journey of discovery.

Chakotay explores his world

Our grants scheme can help fund equipment and services to help make life a little bit easier and more enjoyable for children and families. The Greening family applied for funding to buy a Hippocampe All Terrain Beach Wheelchair to help their little boy explore his world:


“Our little boy’s Hippocampe wheelchair came yesterday and was all set up ready for his maiden voyage this morning!

This chair is going to make such a big difference to our lives as we are surrounded by lovely beaches and fantastic woods, all which have been virtually inaccessible as he grew older and bigger and heavier – he is nearly 5 years old now. He was born blind with developmental delay and cannot talk. He also has low muscle tone and cannot walk and therefore has to be carried across the sand or woodland trails – not any more though!

chakotay collage

We took him down to the beach this morning, right up to the shore line where he sat listening to the waves and catching the wind, it was just perfect for him and he loved every minute, the smiles on his face telling you the whole story. He sat in the Hippocampe like a little king, he loves the arm rests and the feel of the big tyres.

We’ve also been to the woods. He loved the noise of the trees rustling and the stream running, as you can see he got so much out of it. This will open our adventurous side and get everyone out and about (not just me!). We also got my grandson Ethan in on the act by pulling the wheel chair on the special harness.

We know he will have so much fun in it all year round and for us , no more heavy lifting or dragging with wheel chairs or buggies.

We can not thank you and your amazing charity enough, this would not have been possible without you. We thank you from the bottom of our hearts”.

Butterflies, Prince Edward and Camp Beds

We catch up with the latest news from our Innovation Centre, designing cool products to help children discover life and have fun alongside their friends.

Butterfly Shelves

“How fab is this? Cerebra’s Innovation Centre made my daughter Blisse a portable unit for her equipment ready for when we move to her bungalow. It means when Blisse is unwell I can take her to my bedroom or living room and not worry about having it laid on the floor etc with wires everywhere. It has extra shelves to put other things such a pads and toys. It will eventually also have a pole to attach her feed machine to as well. We love it. Her nurse last night was very impressed with it. Thank you so much to the team who made this and put such a girly stamp on it for us”.

— Laura, Blisse’s mum

Slumber Camp Bed

We’ve been asked many times recently for a product to help with changing children when out and about. Unfortunately this has had us stumped, as we have been unable to design something that we are able to make with the materials and processes (not to mention budget!) available to us. However, we have found a solution that might suit some people. The Freedom Trail Slumber Aluminium Camp Bed is a great little camp bed that folds away to 90x19x9cm but when assembled it is 40cm off the ground and long enough for an adult. Although it requires 5 minutes assembly, it will keep children off of the floor whilst changing. We appreciate that is only goes a small way to helping with a very difficult situation, but hope that it might be of help to some of you.

Prince Edward visits ALEX

Prince Edward, the Earl of Wessex recently officially opened the University of Wales Trinity St David’s Alex Building in Swansea, home to our Innovation Centre. He particularly enjoyed chatting with our team and meeting some of the families that we have helped with our innovative designs. You can read about his visit here and watch a short film of the visit here.

And finally…

Congratulations to Ross Head, Product Design Manager at our Innovation Centre, who has been awarded the title of Associate Professor. So, it’s now Associate Professor Ross Head, Product Design Manager, CIC.   Congratulations Ross!

Jack’s Story

Jack KavanaghHello, I’m Jack. I am thirteen years old. I have autism, along with epilepsy, ADHD and learning difficulties. I attend a special school where there is a mixture of students with autism and other learning difficulties. Let me tell you a little bit about myself.

For many years I didn’t speak. When I eventually did develop language it wasn’t in the way that most people would expect. I would only use two or three words instead of a sentence; often I would take people by the hand and show them rather than speaking because I couldn’t find the right words to say. Most of my language consisted of echolalia (repetition of words made by another person-both immediate and delayed).Today, I speak in full sentences; however, I find it hard to understand what is being said to me. As a result I still sometimes repeat another person’s words or answer ‘yes’ regardless of what the person has just said. The one thing that I do a lot is repeat the same question over and over again. It can be very exhausting to listen to!

When communicating with me it’s best that people don’t bombard me with too much information. This hurts my head and I will respond by either covering my ears, self-harming (such as hitting my head with my fist), or hitting out. Ways that you can help me include:

  • using my name first to get my attention;
  • keeping language simple;
  • using pictures to help me understand things;
  • saying things in the order in which they will happen;
  • telling me what to do, not what not to do (e.g. ‘feet on floor’ rather than ‘don’t jump on the sofa’),
  • and using ‘then’ to help me understand the sequence of events (‘It’s computer, then shower’).

I don’t like change; instead, I like to do things over and over again in the same way. I have many rituals. For example, I will only eat alone, and before I sit down to eat I have to ensure that all the house lights are on, the doors are shut, certain things are put away, the cats are upstairs and under the bed (even my cats are trained to fit in with my various routines) and all ‘faces’ are out of sight. I don’t like seeing ‘faces’ at home and demand that anything with a face on it is put away.

There are many things that frighten me. I don’t like dogs, for instance. When I see a dog I will cover my ears and collapse on to the floor or try to throw something at it. Moving cars frighten me too and I will sometimes try to kick out at them as they pass. This is very dangerous, so I have to have someone with me at all times to keep me safe.

I am a lively, fun lad with boundless energy. I can keep going on very little sleep. I wake up every night and I wake early. For nine years I loved nothing but balloons. My house was full of them, which I loved to squeeze, throw, press against my body and mouth, and line up on the floor in rows. Now all I am interested in is time travel. I love prehistoric time lines and time machines, especially the TARDIS. I have my very own life-like TARDIS at home. It has levers inside, which I really enjoy pressing; in fact, I enjoy pulling and pressing levers so much I have several sets. I also enjoy Minecraft. My Dad built me an amazing TARDIS on Minecraft, complete with levers. I also enjoy moving in and out of the different Minecraft time portals.

I can concentrate for long periods of time on activities that I enjoy. At other times I am easily distracted and constantly on the go. Always, though, it is hard to get my attention. My pursuit of preferred activities means that if it weren’t for my Mum and Dad I would forget to drink, eat or go to the toilet.

One question that my Mum and Dad often get asked is whether I have a special talent. Well, no, I am not a savant. A savant is a person with autism who is exceptionally gifted in a specialised field. These people are actually quite rare! An interesting thing about me is that while I am very good at some things, I find other, easier things difficult. For example, I am very good at sport. I can run fast, swim well and I am good at gymnastics. I have many gold medals! Yet, I cannot perform simple tasks like holding a spoon, knife or fork; I cannot brush my own teeth, ride a bike or do up buttons. Due to my resistance to change, sensory issues and learning difficulties I need help with daily living skills like toileting, dressing/undressing, eating, hygiene tasks (washing, brushing teeth, etc.), and cutting hair and nails.

Anxiety, and managing anxiety, is a real struggle for me. I get anxious for many, many reasons. The social world confuses and overwhelms me. I find it hard reading people’s facial expressions, their tone of voice, the meaning in what they say. I find it difficult to put myself into their shoes. I struggle to make sense of time and I have an inability to wait and to share; therefore, I prefer to play alone rather than with my peers.

Due to my difficulties I can often become frustrated, confused, angry and scared and this can lead to meltdowns. This is different to a temper tantrum. During a meltdown I lose all sense of control and I don’t care whether someone pays me attention or not, or even if my needs are met. During a meltdown I will be destructive, throwing and breaking things; I will also hurt myself and will hurt others. I also have no sense of danger. During one meltdown I tried to jump out of an upstairs window; during another I jumped into open water (my mum and her friend jumped in and saved me). I am not being naughty during a meltdown. It is a very frightening experience for me and it takes a long time for me to calm down.

All in all, I am happy living with my family in Wales. I like the peace and quiet of the countryside. I enjoy living near the sea, and on a quiet day there is nothing I like more than to chase seagulls on the beach or draw pictures in the sand. Perhaps one of the most hurtful myths about autism is that we are incapable of love… Well nothing could be further from the truth. I love and am loved deeply in return, and all who get to know me are captivated by my bouncy, cheeky personality.

Written by Dawn Cavanagh (Jack’s mum – on behalf of Jack Cavanagh).

We are looking for young people to write about their experience of growing up with and living with a disability (parents can help if needed). The article can be about anything they like as we want this to be a chance for young people to write about what is important to them as an individual. The stories will be then collected together to form an information pack, as well as being published as individual blogs in our newsletter and on our website. If your child would like to write something for us please contact Emma Thomas on