The EHCP Process: An exercise in jumping through hoops?

Securing an Education, Health & Social Care Plan to support your child's special education needs feels at times like being forced to jump through hoops, over and over. Having been through this process recently I thought I should share our story, and my tips for getting through the process without getting burned.



I wrote last year about our youngest son and his diagnosis of autism spectrum disorder.  You would think, being the parents of a child with learning disabilities (and a syndrome associated with autism) as well as a highly intelligent eldest child with aspergers/high functioning autism, that we could have spotted it a mile off.  But the reality is, just as I tell the professionals, every child is different, every child presents differently.

So Jules has an official diagnosis of Asperger Syndrome (now commonly known as high functioning autism).  His issues are very much around anxiety and he has speech and language and executive functioning difficulties which in a nutshell have meant that transition to a huge London high school from a small suburban primary was overwhelming for him.



Trying to make sense of the constant stream of information and requests, deal with the noise and the rapidly changing demands felt for Jules like being stuck in a whirring computer with too many screens open desperately trying to bring it all back into order.  He lived with headphones over his ears to drown out the noise and manage the sensory overload.  He increasingly withdrew into himself and became angry, defensive, hostile and then he was diagnosed with depression.  He is 12.

We first requested an assessment for Jules in the spring of 2014.  This is the first step in the process of getting funded support for a child experiencing difficulties in accessing the curriculum. In other words, the school, who were fabulous throughout the whole process, had put in as much help and support as they could and yet his grades continued to drop and he was spending more and more time in the learning support department and less time in the classroom.  When he was in school that is, in the all too familiar spiral that we had witnessed with his older brother we watched as history repeated itself and Jules too developed headaches and ailments necessitating a day off, where he received a record number of detentions and sanctions for a range of misdemeanours and more worryingly as he found himself involved in altercations with other boys which on two occasions involved him being injured.

By the time of our request for assessment Jules was getting help above and beyond what was then known as School Action Plus (the highest level of support from within the school budget), he had a named supporter one to one  and was using the learning support department as his main base (read Oasis) for the day.  We sent off the SA1 form requesting an assessment.  At that stage we knew things were changing, I had been involved in some of the conversations around the policy change to move from Statements of Special Educational Needs to Education, Health & Social Care (EHC) Plans.  We did not have time to wait for the new process to be put in place, Jules needed support and we needed to get the ball rolling.

If supporting Jules without the statement was hard enough, it was going to get a whole lot worse.  To speed things up we had paid (or rather scraped together various bits of cash) for a private assessment by a clinical psychologist. After many hours with us she formally diagnosed Jules with High functioning autism/Asperger's syndrome.  Her very detailed report was included in our request for assessment along with reports that the school had undertaken in conjunction with their own visiting Educational Psychologist and Speech and Language Therapist.

After a few weeks we received our answer:

I am sorry to advise that Panel has not agreed to the statutory assessment for J.  The Panel minutes read:
 Not agreed. Panel noted Jules’ needs but felt that needs are commensurate with School Action Plus. 

OK - let battle commence.  Our next step was to file papers requesting a tribunal consider the decision. And the process went on, and on, and on.....

We did not want to go to tribunal.  Who does?  We had been down this route before with our eldest, having started tribunal proceedings twice.  We didn't have the funds to employ expensive specialist solicitors, all we had was google, lots of helpline numbers and the tremendous support of the school SENco and the local Parent Partnership officer.

Our strategy was to avoid tribunal by trying to find out what further evidence might help and potentially persuade the local authority to reconsider their decision.  School provided additional reports and data, all supporting the fact that Jules' performance was spiralling downward even more so.  He started receiving support from Child and Adolescent Mental Health Services as his mental health began to deteriorate.

In the end we asked for a meeting with the local authority in order to mediate and try and find a way to avoid having to go to tribunal.  I won't go into details but despite even more evidence being presented, even more information break downs being requested and provided, the Local Authority would not budge.

Even when I contacted them to inform them that my husband had been diagnosed with incurable cancer and was at the time desperately ill and that that Jules was needing a lot of support from CAMHS they still refused our request to return to panel to reconsider and instead, at the eleventh hour they submitted their evidence to support their decision at tribunal.

Enough was enough, I might have been spinning an unimaginable number of plates but this situation was morally wrong.  I fired off several letters of complaint to various big cheeses and councillors at the council documenting what was happening and I made an appointment to meet with our MP.

He was very good, he was very concerned, he had heard cases like ours far too often recently, and shared our concerns about what was happening in our Local Authority SEN department.  He set up a meeting between ourselves and two of the Senior Managers in the department and I told them our story.  I told them that I had a real sense of deja vu having gone through all of this with Theo and that it seemed that nothing had changed (apart from the constant turnover of staff).  That clearly I was not going to go through the stress of the statementing process if I didn't think my son needed it.  I also told that that despite my husband's cancer diagnosis and the increased stress it was placing on the family I was prepared to go all the way and meet them at the tribunal because it was precisely this stress that was contributing to Jules' mental health issues and making a bad situation worse.

Just after Christmas, a few days before our court hearing I received a letter confirming that the Local Authority was now prepared to assess my son for an EHC plan and that we would no longer need to progress with tribunal proceedings.

We had spent the best part of a year trying to get our local authority to agree to an assessment. Reports had been written, numbers crunched, paperwork sent.  We had seen multiple people, sat in multiple meetings, papers had been lost or not submitted to panel, tribunal proceedings had been started, letters of complaint had been written, we had escalated our case to our MP and local councillors...

And on top of it all my husband was diagnosed with incurable cancer, Jules was receiving support from CAMHS and Daisy was , as always, requiring the most complex of medical care at home...

To say we started the assessment process in a state of mental and physical exhaustion would be an understatement.

And in the middle of it Jules was excluded from school.  His stress and anxiety was making him unteachable, he was like a pressure cooker about to explode, so we agreed with school that this was the best course of action.  He became so fed up with all the reports that involved professionals talking to him and assessing him.  After all , in his mind we had been through all of this last year, why were we now going through the same stuff all over again?...out of the mouths of children.

At this point, having always thought that he would be able to stay in mainstream school with the right level of support, I decided to start looking down the specialist route.  So I had to drag a very stressed and fed up Jules around various schools where he had to talk to even more strangers and answer even more questions.  But eventually we found a fabulous school and I knew that I had my goal for the EHC plan, to secure agreement and funding for a place at this school as soon as possible.

Just before Easter, many long meetings later, we achieved this.  A week after the Easter Holidays, Andy and I took Jules to his new school.  He is a weekly boarder, there are 5 boys in his class, he is very happy there already.  It is not a magic cure, he is still stressed and anxious but now he has the safety net and support that I worked so hard to achieve.  He has been traumatised by everything that has happened over the past 12 months and it will take a while for him to move on from this and gain confidence in himself and his abilities.  The school are already being brilliant and I am confident that in time he will start to regain ground in his education and show the world what he is capable of.  He seems happier, he is smiling more, he is engaging with life, it was so worth the fight!

All I wanted to do was get my son the support he needed so that he could have the opportunity to succeed and get on in life, but if also proved to be one of the most stressful and emotionally exhausting experiences I have been through (and if you read this blog regularly you will know I have been through a lot);

I felt that I was in a combative situation with our local authority, that it was a fight to be won, not working collaboratively to find the best solution for my child.  This is not right, we are talking about a child's future but I did not feel we were collaborating until the very end of the process up until that point I felt I had to constantly prove the need and repeat information over and over.

I had to deal with so many different people, and not just me, Jules had to also, and many of the staff we dealt with would move onto other roles or leave in the middle of the process and again we found ourselves repeating information over and over.

Papers were lost, repeat requests were made for the same information, mistakes were made - at one point I had to abandon an important meeting when I found that another child's name appeared seven times on a report which was supposed to be about my child, in other words the report had not been proof read before it was brought to the meeting, on that day I had arranged valuable respite for Daisy and Andy was on his own having chemo, there was no respect for my time or contribution to the proceedings.

On many occasions I had to remind people that we were talking about my child's life, his future.  This was not some form filling exercise this was about securing support for a 12 year old boy who had one shot at childhood.

Sadly I had gone down this road before, with Theo, my eldest, we went through a similar process and encountered similar obstacles, part of me feels that despite all the government papers and changes in legislation that nothing has changed, that the same attitudes are still entrenched in local authorities, that the same tactics of batting back requests for assessment with a "no" and waiting to see who comes back to appeal remain.  But the optimist in me remains hopeful that while there are people who will challenge and push and  not take no for an answer then maybe things will change.

If you are about to embark on the EHC process or the transition from Statement to EHC you may find my tips useful to help you survive (why are we even having to use this word?) the process:-

Identify your outcome, what you want for your child and keep that in mind at all time
Once I had identified a suitable setting for Jules that became my focus, I set myself a deadline that by the Easter holidays I would have the plan in place with the setting named. Keep your vision in sight and be realistic about what is possible.  There is a finite pot of money, we all want the best for our child but chat to other parents who have a statement or EHC to understand what has been agreed to previously.  I knew for the setting I wanted for Jules that there were already a few children from our Borough there, this certainly helped us get there.  But ultimately it's about getting what's right for your child.

Build your team
You cannot do this alone, you need support, even a friend taking notes takes the pressure off you. 

I had the support of our Council funded Parent Partnership Officer (now known as Independent Advice & Support Services Officer) who is highly experienced and a calm voice in a sea of chaos.  The Government has also funded Independent Supporters across the UK, this free service is invaluable and I really believe that working with them made the difference in our case.  Where I live the service is provided by Core Assets but your local authority should give you the details of who provides this service where you live.

 I also contacted the free helplines at IPSEA and SOS! SEN, both invaluable sources of information and advice.  All of these services are free, all the staff are highly trained in the EHC process

identify your influencers
Who are the people important to your case, who will be providing supporting evidence, who will be making decisions?  Identify them and communicate with them.  In my case I had regular contact with the SENco and the Educational Psychologist, I also worked closely with the Psychologist from CAMHS.  I worked closely with our SEN Caseworker and where necessary cc'd senior team members into conversations.

Know when to escalate
There will be a point in the process where you may need to escalate things.  You don't want to be dismissed as a pushy parent so make sure you escalate after exhausting all other avenues and again know your outcome, what do you expect from this complaint?  What is the difference you would like to see having made the complaint?  I involved our MP only after we had tried a mediation meeting, I also wrote to the Director of Children's services.  Other useful people would be your local councillor and the councillor who sits on the Education/Disability Committee in our Local Authority. 


Keep a paper trail
Put everything in writing, email after conversations to confirm points, don't assume minutes will be done and sent to you following meetings (hence why it is good to take your own minute taker along with you), make sure you have a paper trail of information/decisions that you can refer back to.  Make copies of all your forms and if possible hand deliver documents or send them recorded delivery.

Reports & evidence - more is more
The more evidence you can provide to support your case the better.  We paid for a private psychologist report, it was worth every penny.  School helped us by conducting a speech & language assessment and providing reports by an Autism Specialist as well as an Independent Educational Psychologist.  We collated evidence to show the absences and falling grades and Jules himself wrote a letter to the panel explaining how he felt and what would make him feel better.

It's all about the child



In all the bureaucratic shenanigans and meetings it's easy to forget that there is a vulnerable child in the middle of this.  Jules was fed up of all the testing and having to talk to various people who were sent to assess him, it all became overwhelming and I had to protect him from the stresses of the process as much as possible although he was acutely aware it was going on.  The EHCP process is designed to be child and family centric and as parents and carers of children with SEN it is also our duty to make sure it does this at all times.  The most important piece of documentation within the assessment, the one that is pivotal to all other elements is the first section, the Parent's/Carer's views.  This is the document you need to spend a huge amount of time over, more, in fact, than you think.  Do not write it on your own. I strongly recommend you book some time with your independent supporter, make a huge pot of coffee and write it over several days.

As Special Needs parents there are so many things we take for granted in our lives that we would not think to communicate, working with someone else and talking it through you can tease out so much more detail and paint a far clearer picture of your child's life than trying to do it on your own.  Working with someone else helps give perspective, although it can be painful to put into words it can also be uplifting to at last put down on paper the hopes and aspirations you and your child have.  In Jules' case it was to gain qualifications and to work towards a career in technology, in fact he wants to work at NASA so we put it down.  In Daisy's case when we began work on her transition from statement to EHC it was to spend as much time in school as possible and have opportunities to be with her friends.

Do not forget to put a picture of your child in the document, and also include a picture the people important to your child.  In Jules' case it was his family and our dog, Pluto. Draw a map of the people important to your child, this is your chance to remind people that this is your child and their life you are working for.  Take a picture of your child to the EHC review meeting so that no-one forgets why you are there.

Be prepared to be exhausted
It's not an exaggeration.  Despite everything, even if it goes well, you still feel you are fighting for your child, working to get the best for them, whatever the level of their needs.  At least the people you are dealing with can go home and switch off, you are deal with all those SEN issues 24/7.  Coffee will be your fuel, and chocolate, and crisps.....

Look after yourself and build a support network so that you can switch off and vent.  Meet up with friends, go out for a walk, watch some reality TV, allow your brain to switch off.

Do not burn bridges
At all times be professional but assertive.  I learned very early on in when Daisy was born that much as you breathe a sigh of relief when a professional you don't get on with moves to another role there is no guarantee that you won't come across them again, the world of SEN is actually pretty small.  Keep your cool, count to ten, do whatever works for you to stay calm and collected in your discussions - even if you have to go home and vent at whoever will listen.

Do not give up
You may need to start tribunal proceedings on more than one occasion, do not give up, keep your vision in sight, make time for yourself so that you have the stamina to do this, gather your evidence, your support network and keep on marching relentlessly forward.

Reward yourself
And when it's all over, and you've got your plan (with funding behind it of course!), reward yourself - bottle of wine, chocolate cake, spa day - whatever floats your boat.  Sit back and smile at a job well done.  But don't relax for too long, just because Jules is in a new setting doesn't mean that all the problems have gone away, they are still there, it's just he's in the best place to deal with them.  I'm still firing off emails, attending meetings and discussing strategies, but at least I know that I have a plan and funding to support him so that he can achieve his goals and become that Apache Pilot or NASA Astronaut or whatever his latest career goal involves.









2 comments:

Renata @ Just Bring the Choc said...

All great points Steph, the only thing I would add is that all Local Authorities are different, some are known to be litigious and no matter how amazing your case you will still end up in tribunal as it's just how they work (and they have already paid the solicitors so it's no skin off their nose). Local authorities use these tactics to scare parents off, so don't feel like you've failed or done anything wrong if you don't manage to jump through every hoop, but don't give up either.

stephnimmo said...

TBH we were lucky to avoid tribunal at the 11th hour three times, I'm acutely aware that it is not the case in all areas, the whole point that it's all about a series of hoops and hurdles that all parents go through, but to keep your eye on the vision and keep the relentless march forward, just as you are currently doing x

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