I live in a Tory Borough. On the one hand this is good news because the council have 311 million sat in the bank. On the other hand it means that those in charge of the purse strings are likely Daily Mail reading types. The Daily Mail and other right wing media outlets do not like ADHD and peddle all kinds of twaffle about it. This feeds down into the general population and this creates a problem for a parent with an ADHD child.
I have 5 children with disabilities and SEN and some of them have nice respectable diagnosis like Autism, Blindness and Cerebral Palsy. These conditions are widely accepted as deserving of some sympathy and support. ADHD isn't. There is a misconception that ADHD is borne out of bad parenting. Now surely if that were true then all 6 of my children would have it? They don't. It's also viewed as an affliction affecting the lower classes and the out of work and feckless of our world. Lot's of horrible documentaries depicting this. This also isn't true.
So if you've been given this diagnosis for your child then you have some battles ahead. First off, many professionals subscribe to the Daily Mail type thinking on the subject. I have been told here in the Wandsworth Borough by social workers, EP's and teachers the following:
"It isn't a recognised disability" - social worker
"It's a sign of bad parenting" - social worker
"It doesn't exist and it's wildly over diagnosed" - Educational Psychologist
"We don't give much SEND support to children with ADHD" - Senco
All of this is absolute nonsense. It is a recognised disability and any solicitor will confirm this. It's not a sign of bad parenting (if it were all of my children would have it). It does exist. I agree that negative parenting techniques can make it worse but it's not a condition borne out of bad parenting. Bad parenting will make any child worse - not just the child with ADHD. It is deserving of SEN provision as being afflicted with it seriously affects a child's ability to learn.
You will also hear the cries of the oldies who will say "In my day it wasn't called ADHD - you were just a naughty little g**". I mean really? years ago people threw vegetables at people with Cerebral Palsy and black people had to go different schools - we don't do anything like that now but hey ho (!) apparently the same logic doesn't apply!
This is what you are up against though. Some will not have the bare faced gall to say it to you but some most certainly will.
So I have a son born at 30 weeks - 10 weeks early. Children born extremely prematurely will be much more likely to have ADHD. This son has had an entire primary education riddled with problems. "Lack of attention" and "could do better if he just focused" is written on pretty much every school report since he was in nursery and I have copies of them all. The behaviour side of things, EP's describe as low level silly distractive behaviour - nothing too heinous just disruptiveness. It's not that his behaviour is serious but it's constant which is just as irritating. This has resulted in him being excluded from school many times and I have records of every exclusion, a copy of every time he's been put into a behaviour support unit. To make matters worse despite being identified as having ADHD at age 7 by the ADHD team - he wasn't actually diagnosed with it until age 14 despite my trying to follow it up. My son therefore went this whole time without treatment and without any recognition of his difficulty. Due to lack of attention he has fallen further and further behind and this has chipped away at his self confidence. He has been given hundred of detentions for the symptoms of his ADHD - forgetfulness, lateness and disorganisation. Even we as parents have chastised him for the traits of ADHD prior to diagnosis. He's been in two of the best schools in the Wandsworth Borough and has been on SEND support since he was five. Please do not get me started on SEN Support!!! SEN support is a lovely idea and it kind of works in primary school. There are several issues with it:
1) There is not enough money in the SEND Support budget to help children and so SENCO's target the money understandably toward the most severe cases that probably should really have EHCP's. I know I've done FOI requests to prove this.
2) They are reluctant to identify children with additional needs especially those presenting like ADHD because they know there is not the money to help those kids.
3) Mainstream schools do not have the skill set in teachers, TA's and Learning Mentors to effectively help the child with ADHD. It requires a higher and much more specialist skill set which costs more money. To become a learning mentor you only need a couple of GCSE's and you are then charged with the job of helping children with emotional and neurological problems which people go to university for many years to understand - you can see the immediate problem there I'm sure!
4) Mainstream schools especially secondary schools are completely at odds with children affected by ADHD. The environment of ever changing lessons, ever changing teachers, stopping and starting and the requirement to organise yourself in terms of homework are completely at odds with ADHD and children with ADHD cannot flourish in these environments.
My local authority have a criteria for starting the EHCA process. They carefully describe the symptoms of many of the more 'deserving' diagnosis rather than naming them. Naming the conditions would create a blanket policy which they are strictly not allowed to have. Strangely attention deficit is not described in the qualifying criteria in this Borough. Autism is described at length, so is Cerebral Palsy and Severe Visual Impairment. I have two Autistic children, two with Severe Sight Impairment and one with Cerebral Palsy and that's been great for them!
I applied for an EHCA for my ADHD son last September. The LA immediately identified his case as being borderline (I strongly suspect that is because he has ADHD). This is despite copious amounts of evidence I provided to them to consider when deciding whether to proceed with statutory assessment. The ignored it all and focused on what the SENCO said about him. She said he was only having problems once per month and this is the reasons they gave for refusing to assess. This is despite the real hard evidence I provided that showed this wasn't true. I had behaviour logs from the school which showed 26 level 2 incidents in a two month period for example. The SENCO had played down his difficulties - she was the same person who told me that kids with ADHD will not get much support at her school. That is another issue and I won't go into that here any further. Not nice though - not very nice at all.
So the powers that be at SNAS said that they would like an EP to update their assessment of my son before going ahead with a statutory assessment. I pointed out that this was a bit of bizarre concept since effectively they were wanting to do an assessment before an assessment? It was quite laughable. I pointed this out and they changed their minds and agreed that a tribunal might find it odd that they want to do an assessment before an educational health care assessment and they agreed to go forth with an EHCA. However!! They also reset the clock on the statutory time frames from the date they changed their minds - this was completely illegal as per guidelines in the SEN Code. To this day they won't answer my objections about this despite my asking on which ground they were resetting the clock as per the four very specific grounds set out clearly in the SEN Code.
There are only four grounds in which they can reset the clock on an EHCA (or delay): Link to the SEND Coode of Practice 2015:
Where there are exceptional circumstances
, it may not be reasonable to expect local authorities and other partners to comply with the time limits above. The Special Educational Needs and Disability Regulations 2014 set out specific exemptions.
These include where:
• appointments with people from whom the local authority has requested information are missed by the child or young person (this only applies to the duty on partners to comply with a request under the EHC needs assessment process
within six weeks
• the child or young person is absent from the area for a period of at least 4 weeks
• exceptional personal circumstances affect the child or his/her parent, or the young person, and
• the educational institution is closed for at least 4 weeks, which may delay the submission of information from the school or other institution (this does
not apply to the duty on partners to comply with a request under the EHC needs assessment process within six weeks)
The child’s parent or the young person should be informed if exemptions apply so that they are aware of, and understand, the reason for any delays.
Local authorities should aim to keep delays to a minimum and as soon as the conditions that led to an exemption no longer apply the local authority should endeavour to complete the process as quickly as possible. All remaining elements of the process must be completed within their prescribed periods, regardless of whether exemptions have delayed earlier elements.
Please note: There is no legal timescale of when to issue an draft EHC Plan within the 20 weeks however unofficially it’s around week 14 from receipt of the request of the EHC Needs Assessment – in order to allow for parents/carers to respond to the contents and ask for particular schools/settings.
Unfortunately the SEN Code is not something that is given much regard where I live.
So my poor son is still struggling at school in the meantime. His school offering him cooking sessions once per week and a learning mentor for 15 minutes once per week in response to his SEN under SEND Support. This wasn't helping and the problems continued for him. We kept asking for this to be reviewed and we were totally left out of it. Under SEND Support there is supposed to be some assessing, planning, doing and reviewing going on and it's meant to involve the parents - pretty words I'm afraid - meaningless in most of my experience.
I pleaded with senior members of the council for TAC meetings to address the issues - these fell on deaf ears and my requests were completely ignored. My son is also a child in need as per the Children's Act because he is disabled and because he has an awful lot of disabled siblings. He is subject of a child in need plan for goodness sake! No one did a thing.
The EHCA process has been very badly handled and is now well outside the statutory timeframe. The LA EP, whilst lovely wrote one of the most vague EP reports I've ever read - with recommendations all fitting in with the school's ability to provide provision. This is also not supposed to happen, the provision is supposed to be written with regard to the outcomes and not written to fit in with school's scope or limitations to provide that provision. The LA sent off for a report from the Consultant in ADHD which was never shared with me until I asked for it and this was way after the EHCA had nearly reached it's conclusion.
It's difficult for LA EP's because it's human nature not to bite the hand that feeds you. I do sympathise with and totally get that. I feel slightly worried about writing this blog because it might affect the other provision that I do get. However, I will continue despite these worries but do it anonymously because given my experiences it would be quite stupid not to. In hindsight I should have paid for private EP assessment and this was a big mistake - I see that now.
So in December seeing my son becoming more and more crushed by the system he was in I took the decision to de-register him and home educate. My other children all attend school, I'm not one of these parents who is strongly pro home education. However, if it's a choice between SEN needs not being met and being at home, then being at home it's got to be! Strangely enough since I have done this the behaviour has stopped and he has gone from being 40% below average in the three core subjects (English, Maths and Science) to being at average levels. He is EP tested as being of average intelligence and so is perfectly capable. Despite this average intelligence he finds himself in all the bottom sets at school for years with other SEN kids, kids with behavioural problems (likely other children who are undiagnosed). The thing is my son is 15. I don't have years to play with. The LA know that and so I believe they are using delay tactics with me. They delay and delay - don't respond to me when they should and leave the weeks rolling on and on. The more they delay the closer he gets to 16 years of age when they can wash their hands of him.
I pointed out that I only home educated as a temporary stop gap while the EHCA played out. Once this became excessively delayed I asked at senior level for suitable interim provision to be provided - this has been ignored
. I phoned the EWO in charge of home education - nothing, no response at all. So I'm now forced to carry on home educating when I've made it clear that I don't want to and this is all while the LA keeps on delaying. I believe that this is negligent of my son's special educational needs.
Meanwhile my son is at home when he should be at school with specialist help. I don't really have the resources to home educate because I have 6 children and 5 have disabilities. I'm doing my best and my son is improving but it's not the way to go on. Home education was only ever meant to be a stop gap while the EHCA played out and I made that quite clear at the outset. However this legal process is delayed and delayed due to staff holidays at the council (they are not mentioned in the SEND code as good reason for delaying statutory assessment ) and lots of other equally lame excuses. Keep in mind that there is a legal duty on the council to assess my son in specific timeframe. This is just openly disregarded and they just resign themselves to it not being possible to observe the law and they tick on week to week happy to let it take as long as it takes. I think when a child is out of school and is a 'child in need' that a bit more priority should be given - apparently not. I will update the blog with progress as I go along. I also haven't even begun to start blogging about other issues - this is not just about ADHD though ADHD is relevant to me at the moment. I have lot's to say about social care, therapies and aids for disabled children. I have a whole lot to say about Special Needs Assessment, Disabled Transport, The Local Offer and The Children's Act!
I have 5 EHCP's on the go at the moment - one is an annual review, two are transfers from statements and two are EHCA's - they are all beset with delays and haven't been handled properly. It's funny, in my daughter's EHCA where the school are totally supportive that is all going quite well.
The other oddity is that prior to my children's EHCA's being completed senior management booked both of their cases into their panel because they predicted that at the end of the EHC Assessment they would be contentious cases - they both have ADHD strangely enough. Decisions are not meant to be made ahead of assessments - yet they routinely and absolutely are.
I suspect that both children's cases will fail and I wholly believe that this is because they don't have gateway diagnosis. There is a clear blanket policy going on, disregard of the SEND code, breach of statutory duty and it breaks so many laws I cannot begin to say.
I trudge on with bruised optimism and often bucket loads of despair and frustration. I am still caring for the children everyday on top of educating myself in SEN Law and building my case. Not to mention the chasing, the chasing, the chasing of the local authority which would drive any sane person crazy. The wicked thing is that if I had £7k to spare I could save myself the grief and get a solicitor to wipe the floor with it. Sadly I don't and so it's just me, myself and I!
God loves a tryer though and I'm sure the council will agree with me when I say that I am certainly trying ;)