Common Terminology & the Law in Wales

SEN = Special Educational Needs. With the advent of the Additional Learning Needs Bill the phrase Special  Educational Needs has been superseded for all but the still current SEN CoP.  Thus instead of SEN departments we now hear the term ALN department. In schools the job title SENCO is currently being replaced by ALNCO (Additional Learning Needs Coordinator).  

ALN - Additional Learning Needs. You'll hear this phrase used more and more as local authorities begin to prepare for the anticipated rollout of new legislation in 2018. The two phrases should be considered interchangeable during this transition phase. 

Current SEN Code of practice - The SEN CoP This document should be considered every parent/carer and education professionals main reference as it clearly outlines what the Welsh Government considers to be best practice.  
http://learning.gov.wales/docs/learningwales/publications/131016-sen-code-of-practice-for-wales-en.pdf 

EHE - Self-funded programmes are called EHE (Elective Home Education). No monitoring. Parents who are funding their child's education themselves already know how well their children are progressing. The parents assume full legal and fiscal responsibility for the education a child receives. Many parents who feel their children have been failed by the system, resent attempts to monitor them by that same system. Elective Home Education Government guidance here.  We keep a list of local EHE groups in our online support group for newcomers to enable newcomers to Home Education to be able to go and meet their local group/s.

EOTAS - LA funded home programmes are commonly referred to as EOTAS (Education Other Than At School) in official documentation. The Local authority is responsible for the Education be provided. This group of pupils includes those in Hospital schools & PRU's as well as those receiving Home Tuition from LA tutors,  ABA or II programmes in the Home environment. Monitoring of the LA funded provision is right and proper to ensure taxpayers money is spent correctly. Welsh Government guidance here. In many areas these services are under threat due to funding cuts. 

It is incredibly important for ALL parents of children to be aware of the very clear difference in status between EHE & EOTAS, both in terms of funding expectations, and their own duties under the law.  

FORCED Home Educators - This is a grey area which covers children who are not currently in the school environment for a variety of reasons from bullying to illness and lack of support at school for special needs. Legally children in this group may fall into either of the two categories listed above. This group has become and increasing phenomenon in recent years as sadly cuts to NHS & Education services have begun to bite. The shortage of specialist teaching facilities is a contributory factor, as is the overload on child mental health services at present.  It is in everyone's interest to ensure that this growth is halted. This term is used a lot in Home Education support circles but we'd really rather not have to!
Off-rolling is a term often used to refer to illegal exclusion of ALN pupils and if this happens to your child we'll happily put you in touch with organisations that can help. 

FLEXI - schoolers. There are children who spend part of their week in school and part of it being educated at Home. Permission to do this is at the discretion of the individual Head Teacher so arrangements vary, and the child remains on the school roll.

Access to Education and Support for Children and Young People with Medical NeedsUseful for parents trying to avoid joining the ranks of forced home http://learning.gov.wales/docs/learningwales/publications/131016-access-to-education-for-children-with-medical-needs-en.pdf

Social Services and Wellbeing Act (Wales) 2014 which replaces part III of the existing Children's Act from April 2016.  This is a crucial change of approach from "welfare" to "well-being" & now covers whole of life from birth to old age. Many parents will first notice the implementation of this act via the new "person centred planning" approach being rolled out to many Local Authorities for transition etc. 
http://www.legislation.gov.uk/anaw/2014/4/contents/enacted

Estyn - The Inspectorate for Education and Training in Wales. 

Common Acyronyms

ADHD: attention deficit hyperactivity disorder
ALN: additional learning needs
ASD/C: Autistic Spectrum Disorders/Conditions, includes Asperger’s Syndrome
ATR: additional teacher resource
BESD, ESBD or SEBD: Behaviour, Emotional and Social Difficulties
CoP: Code of Practice
DCD: developmental coordination disorder
HI: hearing impairment
MSI: multi-sensory impairment
MLD: profound and multiple learning difficulties
SpLD: specific learning difficulties, including dyslexia
VI: visual impairment 

Our Face Book group & other web links.
Group - https://www.facebook.com/groups/WalesHESN/
FB page - https://www.facebook.com/cymrualn/
Blog - http://cymrualn.blogspot.co.uk/
Email - cymrualn@gmail.com

Life skills learning resources.

Ability Levels are intended as an  approximate guide only - use your child as your guide!

Life Skills Grades 1-3/Years 2-4

Grade 1 http://www.mml.co.za/docs/FP_Resources/English-Life-Skills-Grade-1-Workbook.pdf

Grade 2 http://www.mml.co.za/docs/FP_Resources/English-Life-Skills-Grade-2-Workbook.pdf
Grade 3 http://www.mml.co.za/docs/FP_Resources/English-Life-Skills-Grade-3-Workbook.pdf

Grade 3/4 Safety & Hazards 
http://www.youthsafenb.ca/en/smartchoices/pdf/smart%20choices%20grade%203.pdf

Age Appropriate cyber safety learning resources.
https://www.thinkuknow.co.uk/

Teens - ASC money management online course. A free online learning module from the National Autistic Society.
http://www.autismonlinetraining.com/mod/page/view.php?id=229

Key Stage 4 - older teens. Money Management workbook from Barclays. 
Social Stories - A free guide to social stories on almost every topic from visiting the dentist& haircuts to dealing with family celebrations. A great one stop shop this! http://www.oneplaceforspecialneeds.com/main/library_social_stories.html

Everyday life 
Life is filled with chaos, and we have to learn how to work and solve problems in the midst of it every day. These interactive lessons give you the opportunity to experience these daily challenges without real-world consequences.  I really like these for teens with anxiety. http://www.gcflearnfree.org/topics/everydaylife/

Do2learn. In order for communication to take place, a person needs to understand his environment and know what is expected of him. It can be very frustrating to not know what is happening or what to do. Frustration can breed inappropriate behavior.  This site is incredibly useful for finding ways to teach what is expected around everyday activities from getting dressed to social emotional skills. Includes help with schedules, story strips, emotional skills training, fine motor skills development etc. One to save to your favourites for sure! 

Life skills for parents & carers - Keeping our young digital natives safe. 

Parents! Do take a look at these cyber safety sites. Being clued up yourself is the best way to ensure our children and young people stay safe online. Our young digital natives are depending on us!

www.childnet-int.org

www.ceop.gov.uk

www.kidsmart.org.uk

www.thinkuknow.co.uk

Sources of help for adults with using the internet in the community. Type your postcode into the database for your nearest source of face to face help in the community. (Lots of Grandparents  we know, who help with home education have upskilled themselves to help keep their loved ones safe this way). 
https://www.ukonlinecentres.com/




Once again many thanks to Lynne Wilkinson for her help in sourcing some of these links.

What is SUDEP?

Rosie Logan Edwards

SUDEP is when someone who has Epilepsy dies during or as a result of an epileptic seizure.

It is more vulnerable in people who suffer from nighttime ‘sleep seizures’, ie having a seizure whilst already being asleep or when in recovery from a previous seizure and is still in the unconscious ‘seizure sleep’ stage.

I had Epilepsy as a child and my son was also diagnosed with it age 4.

Seizure sleep is the term I use to describe that period of time when after having a Grand Mal (Tonic Clonic) seizure, when the period of the stiffness and the jerks have passed and the individual is unconscious and very very still, like being asleep but not a normal regulated sleep, there is no pattern to their breathing and they are abnormally still. In fact it is near impossible to hear him breathing when in this seizure sleep, and I would always look for signs of the tummy rising and falling to know that he was still breathing.

When this happened to my son I would constantly watch him, studying his entire body looking for more possible jerks or twitches, making sure I didn’t miss any sign of anything, he would be so still and so quiet but I would continue to talk to him and tell him that ‘everything was ok’ and that he can ‘come back now sweetheart’, ‘everything is alright’, gently reassuring him, weather he could hear me or not I do not know, but in case he could then I wanted to make sure he was reassured.

As best as I could I would time both the seizure and the ‘seizure sleep’ that followed.

I could always identify when he passed from the seizure sleep into standard regulated sleep, he would take a slow, deep inhalation of breath and he would start to move again and do the usual movements of settling down into sleep again, his breathing would then be more recognisable as regular standard breathing during sleep. The ‘seizure sleep’ lasts approx 10 mins, but this can vary in different people.

Until the seizure had fully passed I would not leave my sons side, not for anything, and even when he when he was fully awake again I would still make sure that someone was with him if I left the room. They must never ever be left alone as another seizure could strike at any time.

I could still see the affects of the seizure for up to 10 days after the seizure had passed, it would always affect his balance, coordination and memory, always those three things, and even when two or all of those things are not quite right for him I am aware that he may have had a seizure without me realising it, this prompts me to provide constant monitoring and checking up on him, which at age 12 he sometimes gets fed up, but I cannot help but do it, I would rather him be a bit fed up with me than him be in danger from a seizure that im not aware of, as I am well aware of the dangers that can so easily happen if he was not supervised or had appropriate help.

My son would also have 2 seizures close together within 12 hours, always 2. This gave me rise to believe that his seizures were habitual after his then consultant telling me they weren’t.

Epilepsy IS life threatening and it kills more people than we realise.

I can remember when I was at high school, a girl’s mum had died from having a seizure, the poor lady didn’t recover from a particularly bad seizure, and since then I have known of others, both in my community, people who have told me their knowledge of it happening and as well in the celebrity world. Regardless of what kind of Epilepsy you have or how the seizure was induced, the danger is that anyone who has a seizure weather they have had Epilepsy diagnosed or not can die from a seizure. It is that real.

Epilepsy can also run in families (which is not the same as being hereditary, so I've been told).

I had Epilepsy when I was a young child, it was totally uncontrolled and on one particular bad day my mum remembers that I had about 15 Grand Mals (Tonic Clonic) seizures and she was convinced that I was dying. She just didn’t think that I would come out of it.

.

I am always astounded when I see an Epilepsy awareness video or piece of information and not once does is it mentioned that it’s a life threatening condition, or the mention of SUDEP.

This is a very real danger and people need to be more aware if it.

On 3 separate occasions all within 8-10 days ,I woke to find my son blue, cold, and not breathing and I had to revive him. This is a very scary situation to be suddenly faced with, and if I wasn’t aware of SUDEP or what to do, then I wouldn’t have known how to help him. Everyone HAS to be made aware, and everyone as standard should take a basic first aid course. This is crucial and should be offered to all parents and carers of someone with Epilepsy. Incidentally….ever since the last time I found my son like this, he has not been able to sleep through the night and he is now nocturnal, he simply cannot sleep and doesn’t get tired like neurotypical children. We fully accept and respect this and we as a family have adjusted to his needs so that he is always supported and fully reassured. But as a result of that last ‘sleep seizure’ I truly believe that whatever happened to him, it affect the sleep regulating area of his brain. He has never been a great sleeper anyway, but the difference between before and after this last ‘sleep seizure’ was so dramatic that I truly believe this is what happened.

My grandfather was a doctor and I was once told that there are two main groups of how one has/acquires Epilepsy, 1, you are born with it, or 2, you have acquired it ie as a result of something else, like an injury, accident, as a symptom of something else ie a tumour, or because of taking strong substances of any kind ie other medication, recreational drugs etc.

There is more chance of growing out of childhood Epilepsy than there is if one develops it during adolescence or when fully grown.

Both me and my son were born with Epilepsy, one cannot compare the two as it is always unique to that individual person.

There needs to be more awareness on SUDEP.

Professionals I have encountered over the years right up to recently, as well as family members, simply haven't heard of SUDEP.

Now I carry spare copies of information that I have printed off from the internet so I can educate people if ever it comes up and when they need to know, and also to protect my son (this is vital) as if he was aware that Epilepsy and in particular SUDEP is life threatening then he would just freak out, it would have a detrimental effect on him and he would be so anxious and stressed that it would likely cause a seizure, so handing over a leaflet or a piece of information is a lot easier than having to try and explain to someone what SUDEP is while whispering or using code words, which often gives totally wrong information and it would severely affect my sons confidence and it would really emotionally upset him if he heard me whispering about him, so handing over basic information is calm, quick and saves stress and time.

These are some good links, but really, there is lots of info on the web now about SUDEP.

https://www.epilepsy.org.uk/info/sudep-sudden-unexpected-death-in-epilepsy

http://www.youngepilepsy.org.uk/about-epilepsy/living-with-epilepsy/sudep.html

http://www.cdc.gov/epilepsy/basics/sudep/

A must read as closely linked with Epilepsy

http://www.bbc.co.uk/news/health-35833997

Any questions at all please do not hesitate to contact me.

Rosie Logan Edwards (note:- if you aren't a member of our Face Book Group then send an email to Cymrualn@gmail.com with your contact details and we'll pass the message on so Rosie can respond to your queries directly)

EPILEPSY PASSPORT 
Useful for appointments, trips and lots more besides. This is a link to the template & guide to creating a specialist Epilepsy passport developed by the RPCH http://www.rcpch.ac.uk/improving-child-health/quality-improvement-and-clinical-audit/epilepsy-passport/epilepsy-passport/

News from the Cymru ALN team - July 2016.

ALN BILL 
Gear up to talk to AMs as soon as Bill is published, suggest amendments, watch out for delay to code.  How the ALN Bill becomes law here.

Ministers Statement:- Next Draft of the ALN Bill expected before Xmas.

Our group is currently discussing what we see as being the key priorities for the next 12 months in order to respond to the current consultation by the deadline of September 9th 2016. Do join us!

New Health related WAG consultation now open - Welsh Language Standards – Improving services for Welsh speakers within the health sector. End of consultation:14/10/2016 

The Campaign for the Children and Young People Assembly for Wales (Funky Dragon)

The Campaign for the Children and Young People Assembly for Wales are calling on everyone aged 11 – 25 in Wales, and all those who care about them, to take part in their consultation on what a new youth assembly for Wales should look like. The consultation is running between the 15th June and the 15th September.

This is a real opportunity for our children to have a voice, so let's not waste it!

https://www.facebook.com/CYPAWales/


ESTYN - report on EOTAS - our summary of the salient points, and the link to the original report here

Useful sources of help 

Dyslexia Gold Learning outside of school continues all year round, so we have a NEW fantastic offer for our children who need help with visual tracking as part of their dyslexia programme. Please see our facebook group for details of how to obtain the Home Education discount for www.dyslexiagold.co.uk "From struggling reader to fluent in 10 minutes a day". 

Calvert Trust The Calvert Trust enables people with disabilities, together with their families and friends, to achieve their potential through the challenge of outdoor adventure in the countryside. We aim to do this by providing: A wide range of adventurous outdoor activities, meaningful challenge and adventure within a framework of safety Skilled, qualified and caring staff able to fulfil the needs of visitors Accommodation appropriate to the needs of the visitors Facilities for families and friends to share the enjoyment and experience http://www.calvert-trust.org.uk/home/home

Disability Sports Wales Disability Sport Wales are committed to providing a range of activities as close to your doorstep as possible in an environment that is just right for you.  Whether you want to participate or compete in non disabled or disability specific clubs /sessions we can help you find the perfect opportunity. Use our search options to find the right sports for you all across Wales. http://www.disabilitysportwales.com

Sense Cymru TouchBase Wales provides a range of services across Wales for deafblind people and their families.While the main focus of our work is with people who have a dual sensory loss – a loss of sight and hearing at a level where people are experiencing difficulties with mobility, accessing information and communication - we also work with individuals who have a single sensory loss and other disabilities. https://www.sense.org.uk/content/sense-cymru-touchbase-wales

Boparan Charitable Trust UK based National Children’s charity, which helps those with disabilities, life-limiting conditions or are in extreme poverty. http://www.theboparancharitabletrust.com/

The Sequal Trust, a small national fundraising Charity, founded in 1968, which is committed to bridging the communication gap for disabled people of all ages throughout the UK. It is  their aim to help each of our disabled members to reach their full potential through the provision of suitable communication equipment. To help people to see the person and not the disability, and to provide the means to set lively minds free, continues to be our prime objectives. SEQUAL stands for Special Equipment and Aids for Living. http://thesequaltrust.org.uk/

We were asked about help with continence issues -ERIC education and resources or improving childhood continence is a national charity that supports children with continence problems and campaigns for better childhood continence care http://www.eric.org.uk/  The leaflets are free to download http://www.eric.org.uk/InformationZone/Leafletsandresources
PromoCon have a team of dedicated experts who can provide advice and support to help manage any kind of incontinence, bladder or bowel related issue. Our helpline is accessible to patients, health care professionals and anyone who requires further information or support.  Our aim is to raise awareness of continence from a national perspective, whilst supporting patients and professionals to improve the quality of life for sufferers of bladder and bowel problems. We can help with information about services, practical solutions and product advice in a friendly a personal manner. We are a part of the wider organisation  Disabled Living and offer our support throughout the country.  We have a range of literature that will help parent, carers, health care professionals and schools cope with incontinence in children and young people. Our Children`s Specialist Continence Advisors can provide support, advice and information. If you wish to speak to them, contact our helpline on telephone number: 0161 607 8219 You can leave a message on our voice mail if no one is available to take your call. Please leave your name and contact information and we will return your call as soon as we can, although this may not be the same day.

Newbies to Home Ed & Technology on a budget.

Almost all home educators benefit hugely from a broadband connection and a basic PC/lap top + printer. However most are also on a tight budget. This post is aimed at helping you avoid the lure of the shiny, shiny salesmen & equip yourself without needing to take out a second mortgage.

Core kit - a computer. If you are on a very low income this Government scheme can help you get started . (you'll have to be in receipt of certain benefits to qualify). They also have some good broadband deals.
http://www.getonlineathome.org/

The refurbished Dell Optiplex range on amazon is also a great low cost option. For under £100 you can have a set up that will suit the needs of most home educators. It includes an antivirus and Libre Office. Do check that the supplier you choose offers a full one year guarantee, as a few are only 3 months. These machines were designed for business use so are a little more durable than those manufactured for the domestic market. A solid workhorse that is suitable for all but ardent graphics heavy gaming fanatics (COD etc) Minecraft, film streaming etc all run OK.

https://www.amazon.co.uk/Dell-OptiPlex-Comput…/…/ref=sr_1_2…

This spec is about £80 -90 currently -

Dell OptiPlex Computer Tower with 19inch LCD Black / Silver Monitor - Intel Core 2 Duo CPU - 250GB Hard Drive - 4GB RAM - DVD - Wireless Internet Ready - Keyboard and Mouse - Genuine Windows 7. 1 year warranty. 

Do you need help in making your new computer easier to use? Let's look at the many ways you can make your keyboard and mouse, Windows, the internet and your favourite applications suit you and your needs via this wonderful tool from Abilitynet ........

https://mcmw.abilitynet.org.uk/

For those who need something a little more powerful right from the off,  why not take a look at the "gaming" Optiplex machines (approx £150)and then get your child to upgrade the graphics card etc themselves as a HE project?

Please take into account the ergonomic needs of your growing child before automatically choosing a laptop over a desktop. It's much easier to ensure good posture & avoid RSI with a traditional desktop set up. They are also much cheaper to fix in the event someone spills a glass of water etc. Upgrading memory etc is cheaper too. Small corner desks etc are available for those concerned with the space issue in their home. 

Printing - I've just swapped over to the HP Envy. Entry prices for this range come in at under £50 but what attracted me was the monthly instant ink scheme. This makes budgeting for printing costs just that little bit easier. So far I'm very happy with the printing quality. I think it's fine for all but the keenest photography students. (Has certainly handled annual statement review scanning/printing prep just fine). This is probably the most economical option for those who will use up to 300 pages of printing per month. Do shop around as it's often possible to get a few free months free instant ink subscription at one shop or another with your initial purchase. 

For those with more cash to splash on the initial investment, or a large family the Epson Eco-tank range allows you to refill your in tanks and has become popular with home educators for the lower ongoing cost of printing. Cost of entry for this range is approx £200. Currently amazon is running a £40 cashback offer on a model costing £179 with 2 years ink supply. This makes this a very cost effective option currently. £140 for up to 2 years printing is a good deal. (Please note the 2 years is an estimate only, you may well go thru the supplied ink cartridges more quickly). 
https://www.amazon.co.uk/Epson-EcoTank-Multifunction-Refillable-included/dp/B015CMOYZW/ref=sr_1_1?ie=UTF8&qid=1474701233&sr=8-1&keywords=epson+ecotank

If you have a very large family, and know you are going to be very heavy users of your printer, then you'll need to be especially canny. It's often cheapest in the long run to have a small black and white laser printer for those everyday workbooks and essays, and then an HP envy used only when colour printing is absolutely essential. This final option is used mostly by those with 5+ kids educated at home where one parent also works from home. Very, very few home educators find they need this final option. 

Tablets - The Kindle is great, the Tesco Huddle is also very reasonably priced. Regular sales at certain times of year make these worth popping on the Xmas wish list. Again please don't feel you have to buy the most expensive to derive fab education opportunities for your child. In general most people find a basic PC more useful as a first purchase, perhaps adding a tablet later on for travel or mobile learning.

Subscriptions to online learning packages. - please ask in our FB group before purchase! It'll save you a fortune. All members do our best to let this group know whenever good HE rates are on offer for specialist SEN packages.

Office software - Unless your child is doing the ECDL or you need it for specialist compatibility purposes, most people get by just fine without needing an expensive purchase of Microsoft Office. Libre Office has overtaken Open Office in recent years as my opensource alternative of choice, simply because I'm finding it more compatible with a variety of other applications and it's very easy to use. http://www.libreoffice.org/

If you do need MS Office right away then this seems to be the lowest cost way to obtain a copy of Office 2016 at the moment

http://www.coastalsoftware.co.uk/home-student-1-install-431…
alt supplier link 
https://getmsoffice.com/microsoft-office-2016-home-and-student-for-windows-1-pc-install.html?utm_source=google_shopping&m=virtual&gclid=CjwKEAjw97K_BRCwmNTK26iM-hMSJABrkNtbjFeR0U1xDZHbA0rYfEWTgp2ZholDfvxCYUsK82rIURoCyq3w_wcBFor popular software packages this supplier often has better rates for eligible families than most places. Well worth checking here against your High Street supplier before making a purchase. (MAC and PC both). 

http://www.software4students.co.uk/

You will need an antivirus! Avira is free and doesn't have the annoying popup ads that bug the hell outta me with some of it's competitors. Do check you are selecting the free download as they also offer more souped up subscription security packages.
https://www.avira.com/

 I'm aware I haven't covered Apple products here - simply because they are out of most people's price range. Family Fund is the traditional source of grant funding to help Home Ed families with the cost of Apple Hardware but have recently had to restrict their eligibility criteria quite a bit. For most people on a tight budget, it's worth looking at PC/android solutions first. https://www.familyfund.org.uk/wales

We often discuss technology solutions in the Face Book group, as so many of our kids need adaptive technology to aid learning in areas as diverse as speech and language development, thru VI and voice to text solutions.If you are unsure do join and ask other parents how they've found solutions for their children's needs.