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The Heartbreaking Injustice of the SEND Parent

Embarking on the journey to get your child additional support through their education is tough.

 

“Just get your child an EHCP, that should help.” 

 

So many parents are given this advice by well-meaning people, making the process sound so simple and straightforward. The reality is quite the opposite though, despite the process having been redesigned to be parent-friendly in 2014.

As a parent with both personal and professional experience of EHCP and the founder of SEND organisation Sunshine Support, I work to offer guidance and support to families facing challenges and obstacles in this complex process which is not parent friendly at all. 

 

What is an EHCP?

An EHCP is an Education Health and Care Plan, a legal document that details a child’s special educational needs and the provision that is needed to meet those needs through education, health and care. The guidance that underpins this document is the SEND (Special Educational Needs and Disabilities) Code of Practice and there are several pieces of complex law that feed into it.  

 

Coming to Terms with being a SEND Parent

As a parent, we often begin our journey into parenthood all starry-eyed and full of hope… Creating a mini-me is an exciting time and the possibilities for our child, in our eyes, are endless. They could grow to be Prime Minister, an Astronaut, a real change-maker. We seldom forecast the difficulties that may plague their path in life, and we avoid all thought of them ever falling unwell.

I’m under no illusion that we come to our journey of ‘SEND’ parent at different stages. Some children gain their diagnosis in utero. Others gain theirs as they’re entering adulthood, whilst others maybe somewhere in between.

Then reality sets in for some of us, when our child doesn’t meet the milestones determined by the NHS or an education setting. This could be linked to physical or cognitive development, or both; it’s not easy to accept nor come to terms with.

We have hope, at this stage, that our child will receive all the help they need with little fuss or fight from us towards authorities, and that we as a family will get the support we need. 

However, that help is nearly never forthcoming. There is always a fight for support. It can become disheartening very quickly.

This is where the statutory assessment process comes in: The EHC needs assessment for the EHC plan.

 

The EHCP Process

Parents, young people themselves or teachers can request an Education Health and Care needs assessment from the parent’s local authority. Within this request, which is most effectively done by detailed letter, the parent/teacher/young person must provide evidence that the child meets both parts of the legal test for the assessment to be carried out.

If a local authority (“LA”) is requested to carry out an EHC needs assessment by a parent, young person, school or college, they must consider:

  • whether the child or young person has or may have special educational needs (“SEN”); and
  • whether they may need special educational provision to be made through an EHC plan.

If the answer to both of these questions is yes, they must carry out an EHC needs assessment. (Section 36 (8) Children and Families Act 2014)

 

Misconceptions and Myths

The LA often insists that applications are done via their online or paper form, but this isn’t set out in law and so a detailed letter is often the most effective way. This ‘insistence’ to use their forms is the first of many myths through the EHCP process.

I recommend including details of the child’s presentation and special educational needs along with what you understand might constitute SEND, and evidence of where they might – or where they already receive – any special educational provision to meet those needs (school reports, educational psychology reports, speech and language reports, diagnostic reports if you have them and so on). 

The LA must then respond within 6 weeks to let you know if they are going to proceed to the assessment stage. The assessment should hopefully then follow, taking you to 16 weeks by which point the LA by law must tell you whether they intend to issue a plan for your child, or not. You should then receive a draft plan by Week 17, after which you have 15 calendar days to make representations (amendments and your views) on the draft plan and set out your parental choice of placement. By week 20, the LA must have considered these amendments, consulted with settings, and issued you with a final plan which names a specific setting. 

Sounds straightforward, right?  Sadly that is not the case. 

Even when you have been granted an EHCP, the content has to be quantified and specified, and in all our years of checking first versions of EHCPs we have never found one that was fit for purpose.

 

An Up-Hill Battle

This is such a tough process for parents to embark on. 

Firstly, having those difficult conversations with professionals to establish your child is ‘different’ can be soul destroying. Then comes the hard evidence…

Do you know how hard it is to read, in black and white, about your child’s difficulties?

With every report there are tears shed. You worry for your child’s day-to-day existence, their everyday struggles, their mental health and their future. That’s before you begin to worry about the wider impact on you, the family, your other children and the wider landscape of what you’re responsible for.

We’re made to feel by the ‘system’ that as a parent, our feelings don’t count. To us our children are everything; we are fighting for their future. To the system they are just a number; a number which costs money.

 

The True Cost of Care 

Councils are plagued with finance issues currently, with many going bankrupt throughout the UK in recent years. The disability sector is often used as a scape goat for these finance problems and so the battle to get an EHCP is a great one; with parents needing to take on the role of ‘solicitor’ in order to get what their child needs.

So many EHC needs assessment requests are rejected. So many EHCPs are refused. Assessments are delayed, and a record number of appeals are being submitted to the tribunal service year on year, as parents and carers fight back against the system. Parents have some great pieces of law to refer to but it’s still a battle that feels very personal to families.

After all, as parents we spend our days sending (what seems like) 300 emails begging for support and reminding people of their professional duties in between being on-hold to services, cut-off and given false promises of ‘panel meetings’. At the end of this exhausting day of parental-admin, we then start our real job of managing our child’s fall-out from school with the stark realisation we are getting nowhere; leaving us feeling useless and angry.

 

We are the Little People

Most recently in the TV series Mr Bates Versus The Post Office we hear Alan Bates say something along the lines of “we are the little people fighting a war against an entity funded by the government who want to silence us” and I have never connected to a statement more than I have to this one. This is exactly the same for the SEND community. We are the little people who they are trying to gaslight, shame and silence.

It’s really difficult to maintain that hope we had at the start, for we are heartbroken by the battle. We get told too often ‘it’s a marathon not a sprint’ but no one can prepare you for the length of this justice-seeking marathon! Maintaining the stamina is no mean feat! You are left traumatised and so very fearful.

 

Keep On Fighting 

Actor Kellie Bright has a son with SEN (Special Education Needs). In a heartfelt appeal to her Instagram followers, Kellie shares “if you are also a mother of a SEND child and you are fighting for an EHCP assessment, don’t stop fighting. Don’t give up when they say no. Keep going, just keep going. There are lots of people out there who can help you and I truly believe that every child has the right to be supported and helped through our education system. They have a right to an education that meets their needs.“

Having gone through the difficulties of fighting for an EHCP assessment and appealing after initially getting turned down, Kellie celebrates the triumph of finally getting an assessment for her son, whilst recognising there’s still a long road ahead. 

 

My Advice to You

  1. Empower yourself with knowledge on the law. Understand your child’s legal rights and know the difference between local policy and the actual law. Use your legal right of appeal wherever necessary. Don’t be afraid.
  2. Truly understand your child’s difficulties by learning the right terminology when it comes to their special educational needs; this way you’re more likely to be ‘heard’ in a room of professionals.
  3. Find your community – moral support from those who understand is priceless.
  4. Indulge in lots of self-care when you can – understanding your own emotional regulation is vital as is keeping yourself healthy. So, even if it’s just grabbing a coffee by yourself at 6am when the house is peaceful, do it and enjoy it!

 

Two of my four children have an EHCP and they’re beautifully written with every need documented and provided for; but neither have been finalised without a traumatising battle. I’ve seen three tribunals and even a high court case (which we won). It may not have been the romantic parenthood we had expected but it’s just as good and infinitely more rewarding… Don’t let the system beat you!

 

Author Biography 

Chrissa Wadlow is the founder of award-winning SEND organisation Sunshine Support; an empowering team of professionals with lived experience based in the UK.

Sunshine Support provide advocacy, free advice calls, moral support, online and in-person training for parents, carers and professionals and are known globally for their impact on the SEND community.

Read more about Sunshine Support here and request their help: www.sunshine-support.org

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