EHCP drama - an open letter to my local authority


Dear local authority,

My heart broke for my baby when I was told he had Autism, I felt a mix of relief to get a diagnosis for him and also sadness and loss for the childhood I thought he was going to have. He was just two years and four months old at the time, and all of a sudden we didn't know whether he would be able to make friends or whether he would be able to learn in a school, what if he could never talk? We were terrified of what the future held but also reassured because we know there is so much support out there for families and for children. There are specialist schools for autistic children and local authority funding for therapies and services. After all we are a developed country and we look after our vulnerable people, right? 

Recently I have come to learn that your education and disability services are flawed and inaccessible to most, I learnt this when trying to secure a special school place for my son. What you as a local authority expects of us parents is to make an application for our child to attend a local school when we are invited to do so. This is for mainstream schools as special schools do not accept applications from parents, so if like us, you want your child to attend a special school, you need to secure an education and health care plan or EHCP. This is a full needs assessment that outlines all of your child's education, health and care needs to ensure that they are best supported in their educational setting. Stupidly we thought this should be easy enough to do, given that our son is due to start school in September and has the language development of a 6-12 month old child, the social skills of a similar age and no understanding of instructions. We were quickly proved wrong.

I spoke to your special needs team on the telephone, who sent me a form to complete and took some details from me. They told me that an assessment officer would be allocated and the process would begin, I gave my consent for you to approach some professionals that had met my son and we were feeling really positive. Sure enough an officer was allocated and she visited us at home to get a bit more information, it was all coming together really well and we would finally be able to access a special school for our son. To our surprise, the assessment officer was really negative and dismissive of our son's needs, she said that we should prepare to be refused an assessment and that the expectation is that we apply to send him to mainstream school and if that doesn't work then we will have sufficient evidence by then to reapply for an assessment at that time.

Further information was gathered from professionals that know our son, such as his pre school and his early years specialist teacher. The decision was to be made by a panel as to whether we would proceed for a full needs assessment, we were refused. Reasons given were that our son is too young (summer born and would be one of the youngest in the year group), also that myself and my husband were 'put off' the mainstream system due to a negative experience at a previous nursery setting (refusal by them to give adequate supervision and threats from them to expel him, we removed him from the setting). Advice was given in the letter saying that we might find that given the appropriate support in mainstream school, he may cope just fine. 

Wow hold on a minute? Evidence? I will need to prove that he won't be able to manage? Formal advice from our local authority was to apply to a mainstream school despite us insisting that our child's needs could not be met there. Then wait for the school placement to fail and gather evidence of that. I am ashamed to live in a country where our disabled children are sent to schools where they experience stress and anxiety due to their needs not being met adequately, just so that adults can gather 'evidence' to prove it. 

His needs were completely minimised and the letter was written as though we were being dramatic requesting such an assessment. There was also a paragraph in the letter saying that with support, our child may wish to log on to the council website and use a service they have to make note of his likes and dislikes which could be shared with his educational setting. A proof read wouldn't have gone a miss, he is 3 and severely autistic he lacks both the understanding and the ability to log on to your website.

Sure enough the deadline for mainstream school applications came around and we did not apply. I do not see the necessity to put my child through something he will not manage because it is what the local authority have advised. Fortunately for me and for my boy, I am brave enough to stand up for what we believe and to fight his corner. I know for sure there are parents out there that are not brave enough to challenge professionals. I am the expert of my own child and more merit should be given to parents assessment of their childs needs.

As a local authority you have let my child down, your staff have told me many times that I would need to provide evidence that he cannot cope in a mainstream setting. When I have explained to you that when stressed and in a situation he does not understand, my child may run away, headbutt the walls or smack himself in the head. Your consistent reply is that this type of behaviour is sufficient to present as evidence to support my reapplication for an EHCP. Why oh why is the advice to parents who are struggling to do their very best, to let their children go to an inappropriate school and suffer to prove a point?

I am having to defer my boys entry to school as we are without an EHCP and I refuse to send him to a mainstream school that will be emotionally damaging to him just to gather evidence. He will miss out on his reception year because there is no appropriate education setting for him to progress to. 

What angers me is that you have to fight for everything and even then disabled children continue to be let down. At my sons current preschool, he gets additional funding to access one to one while he is there. It is essential he has one to one supervision at all times for the safety of himself and others, he attends for 15 hours a week and gets funding for a one to one for 6 of those hours. The staff there still give him one to one every minute he is there, not for any additional funding but because they are human and they care for his welfare, they treat him as a person and meet his needs. With or without a cheque from the local authority. Now answer me this if you will, panel members, assessment staff, look at your caseloads, how many of these children that you are refusing services to, have you ever met? I know on our journey we haven't met any of the people that have sent us letters or told us we are not eligible for service. Perhaps it is time to look up from your forms and meet the people, my son is a human not a case, he is a child not an assessment. 

And the reality is, once the anger wears off from reading letters from you that dismiss his needs, it is all actually really sad. I am just a mum, a mum to a little boy who cannot tell anyone what he needs or how he feels, he needs someone to be his advocate, to keep him safe and that someone is me. I will always fight for him, and when he is being let down or his needs are not being met I will challenge whoever I need to. 

The thing is, I shouldn't have to.

I shouldn't have to fight for everything, nobody should have to prove their disabilities and we should all be able to access basic services, including education. 

Signed,

A very tired Mum


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Comments

  1. What a ridiculous system - put him somewhere inappropriate to stress him out to prove its inappropriate! I agree that some special needs children do cope very well in mainstream schools, but I would think a better system would be to enrol them in a sen school and reassess them that way rather than risking them being stressed out and/or hurting themselves!
    I really admire you for having the courage to fight for your son!
    Thanks for linking up to #AnythingGoes :)
    Debbie

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  2. I'm so sorry to hear of the difficulties and to be honest, injustices, that you and your son are facing. The system should work for everyone and it is totally unfair when we are pushed to witts end trying to get what is a simple right and process for most. Thank you for sharing it with us at #spectrumsunday and I hope I hear better news via here soon. xxxx

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