I am a parent of a child with additional needs, the proud parent of a little warrior. I am also part of a small network of parents locally (POW – parents of warriors – as we coined our WhatsApp group) who share information, lift each other up and support each other through the frankly astonishing mess of paperwork, bureaucracy and fighting that is involved in having a child with additional needs.
A group of us are currently waiting for an EHCP (Education, Health and Care Plan – previously a Statement) to be put in place for their child by the Local Authority. It’s a document that sets out for their education setting what additional help they will need, both physically and mentally, to enable them to reach their full potential within that setting. It contains not only a detailed history and how the child is for anyone supporting them, but it lays out a series of targets for the near future for the professionals to work towards. Now, you wouldn’t think it would be that complicated to put in place. It’s a 20 week process, start to finish, they said. I applied on the 22nd of June 2017 and my daughter is still awaiting her plan 56+ weeks later…
You might think that this document doesn’t actually change much in terms of what happens to my child on a weekly basis and in some ways you would be correct, she would still see the healthcare professionals and education specialists she routinely sees but the difference is it provides a legal framework and it holds those professionals to account and provides her education setting with detailed information about all the additional help she receives and what they can do to help. I trust all the people who work with my daughter but I want to know that everything is being done, in everyone’s power, to ensure that she gets the least of what she is entitled to, an education to suit her needs, just like every other child. This piece of paperwork will set out the funding she will receive – partly from the education setting (from a pot of money they receive from the Council for SEND kids) and added to by the Local Authority to ensure that she is in the correct ratio, has the right equipment and that we are striving to reach her targets. So something is going very wrong here.
Technically each SEND (Special Educational Needs and Disability) child is entitled to an EHCP from birth yet I think I only know of one child personally who has managed to snare this mythical document. I have spent over a year writing and re-writing information about my child, I have sent emails, attended meetings, made hundreds of phone calls, threatened to take the Council to tribunal for initially refusing my child a care plan, had the wonderful help of SENDIASS (a legal charity specialising in helping families of SEND kids) and had the unwavering support of the other parents in exactly the same position as us. Oh and I have cried. A lot. I have wept repeatedly as a result of just how hard this process is and how unfair it is to the parents who fight for something they should just be granted and the children who are failing to get the help they need because the process is so completely flawed.
we are pushy, we shouldn’t have to be but we are because no one else will fight for what our child deserves and needs and for what we need
As a mother of a child with additional needs (soon to be referred to as “disabled” once she reaches school age) I can’t fathom how people manage this without support, without the knowledge of other incredible, resilient parents. I can’t imagine how they manage to fill in Disability Living Allowance forms (read: “please tell us in detail all the things your child can’t do as we list a bunch of typical things and don’t leave enough space for anything other than standard”); apply for Carer’s Allowance (while attempting to juggle a very part time job which is more like your only time off from your very intense home life and ensure you don’t get screwed out of your entitlement); alongside dealing with appointments, healthcare professionals, well meaning comments from friends and family and just generally dealing with a life you didn’t see for yourself….as well as dealing with someone at the council who is sick of “pushy” parents. Because that’s exactly what we are: pushy. We are pushing to ensure that a system which is set up so badly that the forms the professionals complete to feed into the EHCP don’t match the format of the EHCP itself. We are pushing so that the outcomes of the EHCP aren’t dictated by one healthcare professional who only met your child for 20 minutes and doesn’t understand their undiagnosed brain condition or their needs properly. We are pushing so that we can trust when we leave our tiny, vulnerable, usually none-communicative child with a childcare setting they are getting the help they need and aren’t being left in a corner to hit their head off the wall. Yes we are pushy, we shouldn’t have to be but we are because no one else will fight for what our child deserves and needs and for what we need, knowing that we are leaving them with other people who don’t know them as intimately as we do. I have been trying to put something in place for over a year and it may well be close to completion for us but I am astounded that anyone should have to go through this, particularly those parents who already have to fight for so much.
I feel completely let down by the system and powerless to enact a very necessary change. I understand that there are cuts, that departments are understaffed and under resourced, but the SARS department (Statutory Assessment Review Service) need to be held to account. They need to realise that we aren’t just pushy parents, we are people and our children aren’t just a piece of paperwork in a pile that they have to deal with. I have had excuse after excuse – at one stage being told that the process had been delayed because they hadn’t received my signature on a permission slip (permission for something that I sought in the first place) and that it must have been lost in the post….interestingly that was the same excuse given to two other parents and led to delays of up to 4 weeks… Another excuse has been that they just haven’t had to do this process for this age of child before (legally something that can be in place from birth) and in it’s place they have LEAPS funding (Local Early intervention And Prevention Support) which grants a little money to give the child some one to one time with a nursery worker. This is not the same as a comprehensive Plan. In the year since I have applied, once she finally got LEAPS, she was granted 3 hours of one to one care in which the nursery were expected to keep up with her physiotherapy, occupational therapy and speech and language therapy treatments and ensure the safety of a child who is severely developmentally delayed. The amazing nursery (Footprints in North Shields) funded her a lower ratio place out of their own pocket for a full school year and have been training their staff to work with SEND kids. Three hours is not enough but I did not have the energy to appeal (I actually didn’t know I could until much later), to write another letter, to push for more. I feel like that’s all I spend my time doing.
So what I’m hoping to achieve in highlighting this disgracefully broken process is a change. A change in attitude towards parents who are fighting for the rights of their children; a change in understanding towards parents who are pushy because no one else will push for their child; a change in the horrendously stretched timelines of a process that has taken over a year for us to achieve (and at the time of writing I still don’t have a final document 13 months after I applied). This is not the only thing we have to push for and I have no more time, no more energy and no more patience for this process. Yet now I have to write 3 complaint letters, fitting in with the guidelines so I can try and do something about this horribly emotional process, something that I haven’t been able to do during the course of it because I’ve been too busy chasing it (and too busy crying about it) to have time. But if nothing comes of those letters then at least this might shed some light on what so many parents locally are going through. This has to change.