Before my disabled son came into my life I was blissfully unaware of all the difficulties some parents have in getting their children’s needs met.
I assumed that the right wheelchairs were provided when needed.
I assumed that the right school places were available.
I assumed therapy needs were met.
Then along came Adam!
You might have heard it said that the hardest thing about having a disabled child isn’t caring for them, but fighting the battles to ensure that their needs are met by the appropriate services. It is true!
Many years ago, when Adam was at nursery, we started the process of getting him a Statement of Special Educational Needs, the legal document to ensure his needs were met. It took 19 months from start to finish and he ended up starting school without having a Statement in place.
The process left us baffled, emotionally battered and exhausted. Our child had huge and pretty obvious disabilities, yet we had been faced with an enormous battle to get support in the classroom. When it was this hard to get a Statement for a child who could not sit unaided, speak properly, feed himself or take himself to the toilet, it left us wondering how on earth parents of children with less physically obvious disabilities managed to get through the process at all.
Fast forward 7 – 8 years to the new process, the Education and Health Care Plan, supposedly streamlined and “person centred”, with a target of delivering a finalised EHCP within 20 weeks.
We started the process in March 2016. We are now in September 2017 and it has not yet been finalised.
Eighteen months so far.
To be “fair” they did try to issue an EHCP, but not getting his name right was just the start of the issues with that one!
We are now almost there! It is almost agreed. Yet one important therapy provision isn’t included in it because “it is standard practise that SLT (speech and language therapy) ceases once a child leaves primary school.” So, completely not based on need! Do I argue and delay it further? Or do I accept that I just can’t battle everything? Maybe the time and energy spent battling could be better spent finding a private speech and language therapist? I just don’t have the energy right now to take on another battle and Adam needs his EHCP to be finalised so that the right support can be put in place.
When you have a disabled child there often seems to be an emotional “cost” to getting support. Sometimes it is intrusion into your personal life or the stress of attending meetings or proving why your child needs more than three nappies a day or that a particular brand harms your child’s skin.
On this occasion, to get the rest of the support needed, that “cost” is going to be losing speech therapy and wondering if I have done the right thing.
I have done my best. I have attended too many meetings, I have written too many letters, I have cried too many times, I have lost too much sleep and I have used time and energy that I could have been spending with my son.
And that is the biggest “cost” to any parent.
Ordinary Hopes 
Dear Cape-less Crusader
Do not give up the fight as the world needs you to raise this issue above the barrier, this is from one warrior mum to another.
Your son has the same right to treatment in this country as everyone else, just because his needs are different does not mean the NHS has a less statutory duty to provide them to him.
he is not the sum of his disability he is not disabled just differently abled.
Our son met the criteria for Continuing health care for 27 years after the NHS though medical negligence caused his brain damage. in 2008 this was started being removed from him by Swansea health board and then we had a flawed multi-diciplininary meeting 21st March 2009 which removed everything from him. Do not go down the private road as if they think they can get away with this they will. what parent would let their son deteriorate so they can come in and say well he is bed ridden now doubly incontinent contracted up to a foetal position and his life would now be limited as he can sit in his chair.
The NHS was set up to provide health care free at the point of access where did it say that after 27 years that he should pay out the £110,000,00 we have paid since 2008. We are running out of money and time for our son mothers and fathers of disabled children, young adults and the elderly we need to come together as we are more easily to deal with on our own its time we fought back using every scrap of information we all hold and pass it onto each other. look at Angela Shermans book of How To Get The NHS To Pay For Care: e-book
Let the joined up carers share our information with each other and bring to account an NHS which is chosing to hit the least able in society
Welsh dragon mum belching fire and brimstone
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Thank you!
My ire and brimstone s being taken up with holding two other places to account right now. And I desperately need the rest of the provision in place.
I will have a look at that book. Thank you.xxx
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I am shocked and horrified to read your words bout the treatment your son had. Horrific.xxx
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We have been trying to get an EHCP for our son since he was 6 he’s now 14. He now refuses to go to school and we battle with him everyday, his self esteem is rock bottom. And quite frankly he is miserable! Our son has a life limiting disease amongst other educational needs but those needs aren’t being met because apparently he’s not Severe enough! We are about to send in another request for assessment, which by the way has taken me 10 hours just to fill in the form. Without the extra support an EHCP brings our son is unable to not only receive the academic supporter needs but the medical support that is going to keep him alive for longer. The knock on affect to his mental health and well being is immense! Supposedly ‘every child matters!’ As does the ‘voice of the child’ Well no one ever asks him so how the hell do they know!
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This is utterly shocking. I am horrified. The local authority should be ashamed. Is this Cornwall too?
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He’s no longer in primary school because there is no primary school provision that even comes close to providing him with what he needs! He’s still in primary education though.
I don’t really know how the ECHP process works, is it reviewed each year? Can you accept what they’re suggesting now, for the sake of getting it in place ‘quickly’ (although 18 months is far from quick), and then battle for the speech therapy in a year’s time?
It makes me angry that instead of looking at the individual situation, all ‘they’ seem to see is the cost to them of providing the services. No mention of the enormous amount of money you’re saving them by home educating – it must be massively expensive to have a child with Adam’s needs in a school.
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Just sending hugs because you sound exhausted and beaten by the system, but I know you will rise and fight another day because Adam is totally deserves the support – so sad when he is let down by the very system that is supposed to support him x
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Get what you can in place. Take some time to breath, to rest. SALT can still be fought for even if EHCP in place. The service is shocking. My son has a learning disability linked to his struggles with language, has difficulties pronouncing some words and a possible lisp and even with being in a specialist school, we can’t get any SALT support. The whole system is in disarray.
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Reblogged this on The Unyummy Time Poor Mummy.
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Thank you. It has been a stressful eighteen months for me, and many people have been in touch saying they have had similar experiences. So wrong.
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I can imagine, I have a sister that has gone through this as well, her autistic daughter who is now 15 and it is disheartening to hear that things have to be so complicated or have not got any better. Going through the process of whether my son needs additional support at school or not, and so far it has been uphill battle leaving us with more questions than answers
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It is soul destroying. And even once you get it in place, you have to stay completely on top of things to make sure it gets followed.
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We had to go to tribunal to get adequate EHCP’s for our twins. Cornwall LA ignored requests for mediation, refused to acknowledge medical conditions, felt it acceptable for one of our sons to be in college & only have access to an unqualified teaching assistant. All of this on top of breaching almost aspects of the Code of practice.
We couldn’t afford to pay for a solicitor having used our scant savings to procure occupational therapy assessments to prove that one of our twins many conditions included dyspraxia (he was diagnosed at 4 years old).
The whole process took 18 months. And this was for two young people who already had statements.
It’s hard enough raising young people with conditions that include autism, ADHD, epilepsy, dyspraxia, visual processing disorder to name but a few, whilst working. To do this whilst having to force a local authority to adhere to the law is utterly unnacceptable. Most especially when it is documented that one of these young men has been so badly treated at school that he had been suicidal & has ptsd.
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That is a heartbreaking read. The long term harm to our young people and to our families is something they will never take responsibility for. This harm will not be undone. I am so sorry.x
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Oh the pain of the process is very real indeed. It took us 4 years to even get the education system on board with our request for an EHCP (let alone the wait we had for his diagnosis – he was 7!) and when they did (basically when they excluded my son and couldn’t meet his needs) the fight was only just beginning. I hesistated today in a support group forum as another parent ‘celebrated’ the news that her child was going to have an EHCP assessment and that this would mean in 20 weeks her needss would be met….could I really be the bearer of reality? SEN parents just want the magic wand dont we? Surely we can trust in a system? A fellow blogger i belive is now on 22 months with their plan in draft form. i’m only on week 1! Very aware that the road is long. Another ‘reality’ shocker for me was discovering that even once finalised as parents we have to continue to fight to ensure it is delivered and worse than that…each 12 month review you have to fight again to prove it is still required!! I’m quite seriously more tired than I know how to describe. If im not working on it, im thinking about it, reading about it, dreaming about it. I am that mum…you know…the one with nothing else to talk about!
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You are in good company here. The reality is nothing like they tell you.
There are really 2 simple questions, ‘What difficulties does this child have?’ and ‘how do we best meet those needs?’
I still can’t understand why it is so difficult. Or so stressful. Nobody wants their child to need any more support than other kids, but some do and they deserve to have those needs met.
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Your reality is shared by so many other parents in Cornwall. The transfer to an EHCP from a statement, was not carried out properly, with the LA failing to carry out EHC needs assessments. In our experience someone just chopped up the old statement and removed half of the information, then pasted it into an EHCP format.
So you get an EHCP and you think it means something, that the new school will use them to arrange the correct support that your child needs? Right?…Wrong, the realilty is that an EHCP means nothing to the school, when you mention the provision, there is no reaction from school staff because they don’t know what is in the plan or what the legal aspects are of a plan, and even if they did, nobody will make them provide it.
Another reality is that following an annual review, it is quite normal for you to have to wait until the next annual review is due before you get the amended EHCP, which means that while the plan is in ‘draft’ form, your child is covered by the old plan which doesn’t provide the support.
So you eventually come to the conclusion that you need a ‘proper’ EHCP with all of your child’s needs identified and with suitable provision that is specified and quantified as described in the Code of Practice. Well, I can honestly say, I think I have a better chance of finding a pot of gold at the end of a rainbow, than I do of finding a lawful EHCP produced in Cornwall. Although, last week I heard from a parent who proclaimed to have a specified and quantified plan, but until I actually see it, I consider it a cornish urban legend.
This year both of my sons had reassessments and I thought things would be co-ordinated and integrated, right? Wrong again. As the assessments progressed I started to receive phone calls from professionals, informing me that they didn’t carry out assessments for EHCPs, or that a paediatrician doesn’t actually need to meet a child to write a report on them. A child with speech and language needs, can’t get any support from a SALT because in Cornwall, children in secondary school do not receive therapy from a qualified therapist. OT and Physiotherapists only create programmes of exercises, they don’t monitor if the exercises are effective or if the child’s needs have changed or if the exercises cause problems. The other professionals don’t respond. The educational advice from the school was shocking and for one son, half the form had been left blank with no identified needs, proposed outcomes or provision. The end of the assessment has passed with no draft plan and no finalised plan, I know that us Cornish folk like to do it ‘dreckly’ but come on, enough is enough.
We may not be quite as numerous as Trelawny’s twenty thousand Cornish men demanding answers of old, but as parents we can support each other and fight for our children.
Thanks for sharing your story.
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I know the stress of dealing with this process for one child and don’t want to even begin to imagine the stress with having to go through it twice.
Thanks for sharing your story too.x
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Also in Cornwall , there is such a struggle for trying to get EHCP / right education for my child who ‘is a square peg in a round hole’ in mainstream education .
The EHCP system is not working …..too many people to continually chase , your child becomes a number , parents views are disregarded , AGENCIES DO NOT WORK TOGETHER .
The loser in this is the CHILD .
My daughter was wanting to achieve in education , she knew she needed help more then mainsteam can give her , the help isn’t coming currently and she is on the verge of medically becoming so ill that her year 11( GCSE year) will be wiped out .
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I often get the impression that the LA think parents are just being awkward. They forget that we know our children best.
And if it truly was a “person centred” approach, they would have listened to your child telling them that she needs more help.x
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My 19 year old son has just started college ( so it’s a brand new setting with people who don’t know him or his needs ). His annual review was a year ago ( old setting ) and STILL his EHCp is not in place! County need to get on top of this.
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Are you in Cornwall as well? It must be such a worry having him at college where nobody knows him. His EHCP should have been done well before he started.
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I really worried reading of so many people online who can’t get dla or an ehc when their child obviously needs it. We have home educate since my son was 5 having been signed off by our doctor as being in an extreme anxiety state, he had a diagnosis is add, sensory processing dysfunction etc; the head suggested I look at a special school, the special school told me my son was totally unsuited and that the school should do better to include him. All traumatised we fell into home education with no idea what to do. We pay for my son’s specialist sensory integration input as no one else could offer adequate support, we pay someone to support us out in groups and my mother helps us to go out when she’s not working (I have a younger child who also has dyspraxia and sensory processing dysfunction). I am so worried that our dla will stop for no good reason as I’m reading this a lot. Our ehc – 5 months after our meeting I still have not received a copy; I was promised I could update the information, I can’t even get a copy despite phoning county hall leaving my email address too, nothing! Who is checking these systems? It seems shambolick.
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Diagnosis asd should have said!
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We are in Cornwall and feel like Cornwall is slipping back to the dark ages where children/young adults with additional needs are concerned,our daughter has complex/severe Learning difficulties,Autism,anxiety,challenging behavior,we have no help what so ever,we have an EHCP that isn’t lawful,as the LA appear to make EHCP’s very woolly,the required support then doesn’t have to be provided,we have social care provision written into our EHCP which we desperately need but apparently LA don’t know who should be putting this in place!We have an EHCP which is worthless,no social care input,2 years of battling the people who are supposed to help,it appears decisions are being made on budgets and not needs,laws are being broken and Human rights breeched 😔!
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I know many families in Cornwall who are struggling to get the LA to write a proper, meaningful and lawful EHCP.
And the people who suffer from that are our children.x
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Coincidentally I’ve just heard from our SW, they’re very aware that our transfer to ehcp has to be in place by march. I’ve let her know that since her transfer meeting took place in July 2015, the reports used then will be out of date!
They tried again and we had another transfer meeting this July. The only person who showed up was the ehe lady. The SW checked the system today and the only thing showing is that there’s no funding for anyone to provide personal care on outings with take2(?)
How can an ehcp be compiled with no input from anyone?
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How is it that they struggle so much to identify needs and write down what is needed in order to meet those needs?
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I am in the process of changing from a SEN to an EHCP. The whole draft has been based on the old SEN statement from 2009! That’s because despite living in Somerset for almost 5 years, the SEN was never changed. They only changed my home addresses last year! On top of all this, my child turns 16 soon. So 6th forme looms. You tell me how an out-dated report based on a child of 7 can be any use to a child of 16 yrs? I have asked for new assessments for S&L and O.T. And for them to wait until the Psychiatrists can give his input. (my child has just been referred to CAMAHs)..They have said ‘no’ they won’t wait for that input. Why?..who knows! I have done all this before with the SEN. My child even goes to a private school setting for ASD pupils. You would think that I could relax knowing she was getting all she needs. No. There has been no S&L for over a year. And no O.T. for almost 3. And absolutely no work on Independent Living Skills. My child needs all of this. I feel now it a little too late. I dream of living somewhere my child can be happy…Like an island! Until I can afford an island, I try to stay informed and teach her myself the best I can. I don’t work outside the home. But the work I do is 24/7 always and forever. I give up trying to get help from ANY LA 😦
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That is horrifying. Such out of date reports can never reflect a child’s needs.
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My son is 14 diagnosed with autism, adhd, epilepsy, dyspraxia and severe learning difficulties. He also has challenging behaviour which led to him being accommodated under section 20. He is 5ft 11ins and very large in build so unmanageable in a home environment. His EHCP states he has autism and that’s it. He was diagnosed with autism age 4, no statement of SEN till he was nearly 10. This is late intervention. We’ve had so many problems getting support and respite from social care amongst other things that no SEN parent should have to endure that we had to get specialist SEN lawyers. The system is broken. Parents shouldn’t be driven to remortgage their homes to get their child’s severe SEN met.
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It truly is broken. And children and families are being harmed by it. I am so saddened to read of your son’s experience.x
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We had a dreadful experience we began the process to apply for an EHCP for our son in 2015. My local authority is Northamptonshire county Council
I made the decision to apply for one myself as for many years my requests for application for a statement had been ignored by primary school and once EHCPs became available they again were trying to discourage an application they felt he would be ok. He was diagnosed at the time with High functioning Autism /Asperger’s behavioural difficulties, sleep disorder and was treated as dyslexic I suspected there were other issues that professionals didn’t wish to investigate and would try to me off. He was beginning in year 6 and we were worrying about secondary school.
Initially we refused in are application to assess, I appealed and evidentially our LA conceded and agreed to assess. By this time we were transitioning to secondary. The assessments didn’t really happen they went through the motions using a report from school information I sent which covered paediatrician etc and an old EP report that was adjusted slightly bit the EP didn’t actually see him. Into speech and language assessment carried out or OT and no social care contact. In fact we had only one contact from the La officer to say hi I shall be dealing with it. In this time my son started secondary and it was a disaster. This was sept 2015. We explained we were in the process of applying for an EHC and his needs as we currently knew them to be. The senco felt we were over anxious and on a whole politely listened and ignored us. The result was our boy becoming a school refuser within 2 weeks of starting, regressing, becoming selective mute, reclusive, having serious behavioural difficulties, anxiety and depression. We tried daily to get him into school, he was under camhs gp paediatrician and the outreach team all at my own referral. School would only allow him in 2 hours a day and to be held in a room with one other student not allowed to mix with other students and within another month of sporadic attendance he became a full school refused and In A dreadful state.
The assessment period came to an end and the La refused to issue a plan!
Again we appealed continued to support our son I attempted to teach him myself as the school and La would not help with a offering a tutor. We instructed a private a EP who assessed him. Just before evidence the LA again conceded and agreed to issue a plan. What followed was best described as toilet roll an appalling g EHC draft that was out of date not quantified not not qualified and not outlining his full needs. I raised my expected changes and named my preferred school a specialist non maintained school that specialised in Highfunctioning Asd /Asperger’s and co morbid secondary conditions. That took both day and residential placements and offered a waking day curriculum.
Of course all this was refused !on the grounds of cost to public purse I was offered a general special special needs La school for children with severe disabilities somewhere he would never fit. From one extreme to another so appeal 3 was launched! We appealed on content of plan and placement
We had private speech and language assessments private OT assessment, a Dyslexia assessment and a more detailed private EP assessment carried out which looked at both the schools along with our child’s needs. As these reports came in more diagnosis followed which I requested were added to the EHC to meet the needs he came our with 6 additional secondary conditions that had been missed and ignored by both the education and NHS! Despite my best efforts over many years. We couldn’t afford legal representation so on the day represented ourselves.
So fast forward our tribunal day came in November 2016 and we were fortunate on the day we had a wonderful judge and panel of experts and were able to prove the legal tests that our child needed the school we wanted and the LAs couldn’t meet his needs, he needed the intense therapies delivered due to being deprived and ignored for so long by the NHS and education and these needed delivering by qualified professionals not TAs trained with a short course. He needed the holistic environment of school I was advocating for. All my changes to his EHC were granted and our place was awarded. He started school in January 2017 2 years after beginning this process. Now in the right school he is doing well and we are getting our boy back, he attends a day boy takes part in after school activities and receives all the help he needs in all areas.
I now try to assist other parents in my area In the process as an independent advocate up til now this is voluntary but to be honest it is a full time job and may need to rethink. I am training through ipsea and have come across so many similar cases for boys like mine locally one sadly lost his tribunal after 2 years and is still not in school and awaiting to be able to have a review he is 15 son it will be to late for him and he will have had no education as the La have failed to meet his needs.
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I have not attended my county’s Aiming Higher for Disabled Children conferences for many years now, because it was little more than the council patting themselves on the back for doing a great job when the reality is very different. Families really do need people like you helping them through and I hope you can find a way to keep doing it. Not everyone is strong enough to stand up to the LA. What happens to those children?
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