40 winks

Or, otherwise MUCH more aptly entitled…

Our EHCP journey

EHCP

Now, before you settle down to read on, it’s only fair that I give you a bit of a ‘heads up’ about this post; because, in my opinion, it’s only suitable for:

Some Parent/Carers whose children will be going through the EHCP process (that’s an Education, Health and Care Plan)
Or
Individuals who’re in need of a good snooze (hence the initial title)

…because, trust me, this post is long (I mean REALLY long) and, if it’s not apt for you, it’ll probably bore you so much you’ll be in the ‘land of nod’ within minutes!

(I’d never get a job in sales, would I?)

Ah well. Never mind.

Btw, before anyone contemplates jumping on the keyboard, trying to give me a telling off, please don’t bother; I’m not, in any way whatsoever, playing down the dreadfulness of sleeping difficulties (trust me, I know how miserable that can be!), nor am I making light of something as significant as an EHCP – there’s no-one on the planet that takes my child’s wellbeing more seriously than I do.

No-one! *stern face*

The title’s just my way of attempting to lighten the mood a little. Because, actually, this IS serious stuff…with the potential to get very, very stressful for families.

Anyway, I’d suggest, if you don’t fit the above two groups of people, you make yourself a nice cup of tea, put your feet up and watch some telly….or, perhaps forget the TV (there’s probably nothing on worth watching anyway – just the usual drivel) so just go do something nice instead and I’ll let you know via our Facebook page when a new post (hopefully a little less serious that this one) is available.

However, if you DO insist reading on, don’t say I didn’t warn you *wink*

Disclaimer coming up…

So, before I continue, I suppose I’m going to have to add the disclaimer stuff here…

This post is by no means aimed at providing advice, so please don’t take it as such. If you need information or support on the EHCP process, you can get it from your lovely local Parent Partnership Team (now called IASS – yeah, seriously!). Every area should have one and your local authority (in the UK, that is) should give you the contact details of what independent support is available.

If they don’t, well, let’s just say they’re being very, very naughty!

If you do need advice, just try and write out a rough draft of what you might want to say, then go and take it to someone else to have a look at or give them a tinkle and have a chat. It’s often difficult to take the emotion out of documents like these and I know from experience how stuff like this can bring up feelings (and perhaps fears) that you’d rather not think about.

I get it. I honestly do. Been there, am still there, got the T-shirt!

Whoops!…that was advice on getting advice, wasn’t it?

Sshhhhh…let’s keep schtum and not tell anyone about that, shall we?. *wink*

So what prompted me to write this post?…

Well, I’m writing because we’re now going through the EHCP process with Hannah and I wanted to share some information from our parental consultation form.

You see, when we commenced this journey, I trawled the internet until my eyes went all fuzzy, trying to find anything that another parent carer had written to give me a point of reference and to check out if I was on the right track. But I couldn’t find anything….and that felt a bit rubbish…so then I spent hours and hours (and hours!!!) thinking and stressing and having the occasional sleepless night pondering on what I wanted to put in there – drafting and re-drafting what I hoped might be ok.

…and then I went and got some advice from someone far more knowledgeable than I am, who told me that what I’d written was ok.

Phew!

…and then it was suggested that maybe, some other parents on a similar journey, might benefit from reading it too. Hence this post.

Documents like these can feel pretty daunting and downright scary for some people (in fact, the whole process can) and I want to take some of those feelings away if possible.

We, in the special needs world, often have enough scariness and stresses in our lives, without adding to it with stuff like this!

Every child is beautifully unique. Everyone’s strengths and needs are different too, so therefore everyone’s EHCP won’t be the same. However, this might give someone some information about what they might (or might not) want to add to their child’s report.

I’m not suggesting it’s perfect by any means and I know I’ve missed stuff out that I ought to have included, but it’s the best I could do right now…and I’m happy to share if it helps someone.

So what’s an EHCP? you may ask…

If you’ve got to this point (and ignored my advice not to read on…you little rebel you!) and were wondering what all this EHCP stuff is about then I’d better elaborate a little, hadn’t I? (For better information, you might just want to look it up on a reputable site via the internet – I’ve used Special Needs Jungle which is good – or IASS might be able to give you some info)

As far as I’m aware, the EHCP transition will happen for all children or young people with additional needs who have an existing Statement of Special Educational Needs (SEN) at some point in the near future. Apparently kids just starting out on their journey may just get offered the EHCP, not the SEN – if they’re deemed eligible for one, that is.

An EHCP is a legal document here in the UK – allegedly aimed at providing a more ‘cohesive’ approach to providing education, health and social care provision.

(At this point, Annie chuckles at the suggestion of ‘cohesion’)

It aims to provide a more co-ordinated assessment process.

I’m doubting!

It sets out a child’s strengths and needs and (supposedly) identifies what needs to be done to meet those needs.

Actually meeting needs eh? – oh, I’m doubting – BIG TIME!

The intention is also to include parents, carers, children and young people at the heart of that process

Really?

It focusses on outcomes.

*Annie laughs and laughs and laughs* – With all these savings and efficiencies going on across the UK? You’re having a laugh aren’t you Messrs Cameron, Osborne et al?

It runs from birth to 25 years.

*raises right eyebrow in suspicious manner*

Yeah, that’s as long as our public services haven’t been sold off by then. Oh, and which smarty-pants, sat in their ivory tower, came up with the UTTERLY RIDICULOUS idea to ask parents of babies or tiny children or, even teenagers for that matter, where they envisage their child with additional needs at age 25?

Is the Government handing out crystal balls these days?

Some children have life limiting conditions too and may never reach adulthood….how MINDLESSLY INSENSITIVE can we get by asking these questions, eh???????

Grrrrrrrr!

No doubt too, some people will have an opinion that I “should” perhaps be more realistic in terms of my own aspirations for Hannah, given her significant additional needs – maybe suggesting I write something like: ‘I’d like her to live in a residential home, where she has her own bedroom and is taken out on trips every now and again’.

HELL NO!

I care not one jot about anyone else’s opinion. My motto isn’t Per Aspera ad Astra for nothing….me and the kid aim to reach for the stars!

…and why ever not?

Everyone has a right to have aspirations, ‘realistic’ (subjective) or not, including me, right?

No-one, but no-one, can predict the future. Unless they’re God…obviously! (Although I think some people I know actually DO think they’re God sometimes! *sigh*). But one day, sadly, Hannah may well end up living in a residential unit (hopefully a nice one) because she’ll have no-one to look out for her when I and her daddy drop off this mortal coil…and the prospect of that for the future (especially given Hannah is only 6 years old right now) ABSOLUTELY breaks my heart (that’s a massive, HUGE understatement btw and something I’d rather not ponder on).

However, as long as I live, I’ll be aiming high for my girl…and woe betide anyone try and stop me!

Oh blimey, better change the subject a little, I’m at risk of getting maudlin AND feisty all in one paragraph!

So, let’s get back to the EHCP.

Whilst you’re busy writing on your form about your child (you can write as much as you want and you can ask for an electronic copy) other professionals should be filling out their reports too. They’ll first need to ask your permission to do so – refreshing, huh? Then a meeting should take place (and you’ll get an invite) and all the other people who’ve done their reports will attend….erm…well…unless you’re like us and NOBODY (yes, NOBODY) from the NHS bothers to turn up!!!!!!!!!!!!! and another document will be formed which you’ll get to contribute to. Then it all gets sent off to the SEND team who have the responsibility of clumping all that information together to form a fancy-schmancy, sparkly, lovely plan for your child that everyone works towards.

Hopefully!

If the plan isn’t sparkly, then there’s an appeals process. IASS can help you through all that.

Right, as always, I’ve waffled on FAR longer than I should have, so, without further ado, here’s some of the things I wrote on Hannah’s form…with a few personal things taken out – well, we do actually like to keep some things private…and with a few fancy words thrown in….and lots of repetitiveness and extremely poor grammar.

Sorry about that.

ABOUT YOUR CHILD
What long term aspirations do you have for your child?

As Hannah is only 6 years old at completion of this first EHCP, it is impossible for anyone to speculate on what the future holds for her. Her needs will change in time and, as such, it is expected that this EHCP will be amended accordingly and expressively:
• For Hannah to feel happy and for her health to be maintained and monitored by all relevant professionals and for her to be referred in a timely manner and without delay or watchful waiting to other professionals where intervention is required and to avoid any further unnecessary pain, distress or discomfort in the future and without the need for parents to seek legal intervention.
• For Hannah to reach her full potential and be supported in doing so.
• For her strengths and needs to be identified and regularly reviewed (more than annually) and for her to be challenged effectively so that she is equipped with the skills required for her to live independently in the future.
• For Hannah to flourish into an autonomous individual.
• For Hannah to live independently and equipped with all the skills and knowledge required to do so, e.g. to acquire skills in personal self-care, budgeting and handling money, cooking, keeping safe, knowledge of how to access services and so on.
• For Hannah to remain in education into adulthood and further education/University.
• For all NHS and LA professionals to provide meaningful, regular intervention and support and at least in line with their statutory duties.
• For Hannah to be provided with the skills and knowledge in order to possess a means of clear and effective communication in order to make her needs and aspirations known.
• For any intervention, from any department or service professional, to act in a timely manner, without drift or delay, in order to ensure Hannah’s needs are best met and she is given the opportunity to flourish and develop.
• For her to have access to regular appropriately supervised leisure opportunities and play suitable to meet her individual needs.
• For Hannah to be provided with the skills and knowledge required for her to pursue a career of her choice.
• For Hannah to be provided with an appropriate means of transport.
• For her to be able to regularly mix with children of all abilities.
• For her to access one to one support at all times – be that at school, college, after school clubs etc.

What is important for your child, both now and in the future?

• SEE SECTION A ABOVE – all information is relevant.
• For all her health needs to be met in a timely and meaningful way in order to avoid distress, pain etc. and to avoid medical negligence.
• For professionals to consult and seek advice from others more knowledgeable where an opinion, regarding any aspect of Hannah’s development, is required.
• For Hannah to be provided with the best possible educational facilities, equipment and staffing up until such time she leaves education.
• NHS and LA funding provided for Hannah to be able to access all relevant services and equipment in a timely manner in order to meet her holistic needs.
• For Hannah – as a child in need under S17 Children Act 1989 – to be referred to any service where assessment, exploration or intervention are required, regardless of cost to the LA, Education or NHS department and in order to ensure her needs are fully met.
• For Hannah to be given useful information regarding career opportunities and support in accessing a career of her own choice.
• For Hannah to be provided with one to one support by an adult (in any setting including school) who is sufficiently equipped with the knowledge and skills to ensure she is safeguarded from any harm whatsoever both now and in the future.
• For Hannah to be monitored and supported by all NHS professionals on a regular basis and in line with their statutory duties. For these individuals to provide written reports and regular updates to parents regarding their intervention, to notify them when they are meeting with Hannah and provide parents the opportunity to attend these meetings – as is their right.
• For a multidisciplinary meeting to be held at least annually, to review the EHCP and a lead professional appointed to take responsibility for ensuring implementation of any new services/support.
• For Hannah to be provided with every opportunity both at home and at school to be able to reach her full potential
• To be provided with NHS equipment in a timely manner which meets her holistic needs – e.g. equipment provided at home/educational setting and IT equipment necessary in developing and securing her skills.
• For Hannah to develop communication and be provided with one session weekly (at least) SLT intervention in line with statutory duties and on par with her peers.
• For her to develop all Independent living skills required for adulthood.
• For her to be provided with all the skills and knowledge required in order for her to grow into an autonomous individual
• To be provided with leisure opportunities with one to one support.
• Parents to be provided with support and offered respite or support in Hannah’s care and development, when required.
• For all this information to be included within the finalised ECHP both now and in the future when reviewed.
• For the needs of parents/caregivers to be reviewed and access to respite and/or emergency support provided when required.
• For Hannah to develop effective communication both verbally and in the written form.

Please tell us about the difficulties that your child experiences

Cognition and learning:

Hannah is diagnosed with a rare genetic syndrome which affects all aspects of her life.
• It is vital that the LA, education and health services understands that cognitive development does not develop in isolation and is intertwined with sensory development. As a result, it is expected that Hannah is provided with an effective ‘sensory diet’ on a daily basis at school and at home.
• Hannah has no current skills in reading, writing and maths. It is expected that she will be provided with strategies to learn all of these during her time in education.
• She must be provided with opportunities to learn both independently and with one to one support.
• She must be given skills to retain information.
• Hannah must be provided with the best possible education. She must be reviewed regularly in order to ensure her learning needs are updated and future goals are of a standard which provides her with the most effective means of learning for her to flourish into an autonomous individual with all the skills and knowledge required to enable her to live independently.

Communication and Interaction:

Hannah is non-verbal and is significantly developmentally delayed.
• Hannah has been assessed as having language development at 6 month level. As a result, intensive SLT is required on at least a weekly basis and interventions put in place in order to ensure she is provided with a model of communication which best meets her needs and provides her with the ability to communicate effectively. Hannah requires one to one SLT by a qualified professional on a regular weekly basis. In addition, school staff to continue to work with Hannah throughout the school day to implement strategies provided by the SLT therapist.
• Regular NHS hearing tests are required in order to ascertain any changes to her hearing and interventions put in place to ensure no deterioration.
• SLT required to address the auditory processing and attentional problems in order to address Hannah’s difficulties.
• Requires one to one support, monitoring and intervention in attention, listening, speech, communication and language skills. Requires development in vocabulary, expression and understanding in all aspects.
• It is expected that the responsible commissioning body must ensure effective, regular intervention is upheld in this area.
Social, emotional and mental health:
Hannah is diagnosed with CdLS. Assessment, intervention and support is required by professionals who specialise in this syndrome.
• Daily intervention required in order to assist Hannah in addressing self-harm issues
• Intervention required in order to assist Hannah in communicating, understanding and processing her emotional needs – through effective and regular SLT/other professional intervention, assessment and support.
• Assessment required and effective interventions put in place to ascertain the reasons behind these current (or future emerging) self-harm issues by professionals knowledgeable in CdLS.
• Hannah requires assessment and one to one support in all aspects of her social and emotional health.

Sensory and/or physical needs:

• Hannah has moderate hearing loss.
• Hannah needs support to develop her LISTENING skills.
• Hannah experiences difficulties in tactile development. Her pain threshold is dissimilar to that of an average child. Therefore vigilance in all staff involved in her care is vital. Hannah requires a meaningful sensory diet to help address this.
• Hannah requires a wheelchair or buggy to get around outside. NHS intervention and funding is required to provide the best possible equipment in order to meet her needs.
• Hannah needs to be provided with one to one support by a responsible adult in order for her to access opportunities.
• Hannahs hand function is delayed but belies her manipulatory abilities which is consistent with the genetic condition she is diagnosed with.
• Hannah frequently stumbles. She requires Piedro boots and assessment of her needs by orthotics, physio, orthopaedic consultant and consultant paediatrician to monitor and provide support where necessary in line with statutory duties. At the time of writing this consultation, it is anticipated that in 2016 she will require medical intervention to address her deteriorating mobility. She will also require access to regular physiotherapy, orthopaedic consultant intervention and orthotics to ensure no further deterioration goes unnoticed.
• Hannah self-harms and, given her syndrome, this will increase with time. All staff involved in her care to remain vigilant of this and put in place strategies to address and minimise this. Any concerns to be reported to parents.
• Hannah is reliant on an adult for all aspects of her physical needs and care. She continues to require support and supervision from an adult whilst eating to ensure she does not choke. She continues to require an appropriate adult to make decisions for all aspects of her life.
• Hannah requires support in toilet training, dressing and all aspects of personal care.

EDUCATIONAL NEEDS
Tell us what you feel is working well in school or college:

Since September 2015, there appears to have been a marked difference in the quality of teaching and commitment to ensuring Hannah’s needs are understood and best met. It is hoped that as Hannah moves on within the school that this same quality of and commitment to teaching continues to be at the same level and that she is challenged and supported in learning new things to ensure her holistic needs are met. Hannah continues to make progress at her own pace.

What do you feel is not working well for your child in school or college?

• Hannah requires one to one supervision at all times in order for her to be safeguarded from any further harm. She has no concept of her own or anyone else’s safety.
• The annual review MUST ensure clear focus on Hannah’s holistic needs and thus ensure efficient integrated working for all professionals involved. School should not be left to co-ordinate NHS services during a meeting designed to review annual educational achievements.

What support do you believe your child/young person requires in school/college to help them to succeed and reach their potential?

• Hannah requires one to one supervision by a suitably qualified professional who is fully aware of her strengths and needs in order to ensure she is safeguarded from harm.
• Hannah requires teaching intervention to (at least) a good standard which ensures she is equipped with all the skills and knowledge required to ensure she is able to live independently in the future. All staff should be aware of her strengths and needs and the aspirations parents have for her.
• An IEP needs to be formulated in line with statutory requirements. It must be SMART and reviewed at least 2 or 3 times annually or as and when targets are met.

SECTION D: HEALTH AND SOCIAL CARE

Does your child/ young person have any social difficulties that impact on your family at home?

Hannah’s syndrome affects most aspects of her life. Thus impacting on the whole family and at a level where there is no spontaneity. She requires clear routines and boundaries and one to one support at all times. Hannah is dependent on an adult for all aspects of her care.

What health and social care support do you feel is necessary to support your child/ young person’s Special Educational Needs?

• For ALL professionals to liaise and work collaboratively in order to ensure Hannah reaches her full potential and for parents to be regularly consulted regarding their intervention.
• For the CAF to be re-opened and a lead professional designated.
• For health and social care professionals to ensure their intervention is in a timely and effective manner (and not solely monitoring or watchful waiting) to ensure her holistic needs are met.
• For Hannah’s holistic needs to be assessed, monitored and reviewed on a regular basis and where any new or emerging needs are identified by parents or professionals.
• For equipment or support to be provided in a timely manner which meets Hannah’s new, potential or emerging holistic needs now or at any time in the future.
• For all existing services currently in place to remain in place via the NHS or LA (health and social care) and without costs incurred to parents or Hannah and for Hannah to be referred without delay or cost to any other appropriate services where there is a need identified by either parents or professionals.
• All of the above mentioned in earlier sections of this form.

Is there anything further you feel we should know about your child/ young person?

It is vital that to ensure Hannah’s holistic needs are understood and met, that all professionals work collaboratively, efficiently and effectively and in partnership with parents.
Hannah’s needs (and those of her parents as her carers) will change and undoubtedly increase over time and, therefore, it is vital that she is provided with a team around the child approach and the EHCP reflects those changes AND more importantly, that service provision is not solely driven by savings and efficiencies or used as a tick box exercise. Any intervention must be regular and meaningful in order for it to be of any benefit to Hannah and her development. It is also vital that a professional equipped with the knowledge to co-ordinate services is formally allocated as key worker in order to ensure her holistic needs are met.

The End….for now!

ZZZZZZZZZzzzzzzzzzzzzz *coughs and opens eyes, startled*

Sorry, I must have drifted off there.

Told you it was long, didn’t I?

Right, that’s all for now my lovelies.

I hope at least one of you, somewhere, found a little something from this useful. Please let me know if you did.

Until next time,

Per Aspera ad Astra!

Annie xoxo

This post is dedicated to everyone who’ll go through the process, both now and in the future. I know our lives are tough and often an emotional rollercoaster, but remember, this EHCP malarkey is probably by FAR not half as bad as other things you’ve been through before. Don’t be afraid to seek help if you need to.

And to Cheryl…for being utterly fabulous and lovely and helpful.

(Graphic courtesy of photofunia.com)

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2 Responses to 40 winks

  1. You crack me up!! I didn’t read the whole thing (I don’t fit into your two categories!) But oh man I am becoming familiar with how confusing it is navigating the systems and services and paperwork. I think it’s great that you’re sharing your knowledge!! Sometimes it’s easier to learn from another parent!

    • Haha, awh, thanks. Yep, whether you live in the UK or the U.S. (Or probably most other places) navigating that beaurocratic red tape and all the other stuff is a stinker, isn’t it? Thanks for reading just a little bit though…and thanks for commenting.

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