Hayley’s EHCP Save-Our-Sanity SOS plan

It seems that at every milestone and crossroads in your child’s life, your pride, relief and excitement at their achievements is met with an equal measure of stress and worry. When your child has special needs, as my daughter Natty, who has Down's syndrome does, the process changing to an Education, Health and Care Plan (EHCP) is no different, I have found.

When they start school, your chest heaves with pride as you snap pictures of them in their crisp new uniform, yet you collapse, exhausted and emotional over the Reception Class Finish Line after months of transition plans. You worry over how they’ll settle, their health vulnerabilities, energy levels and safety. You remember every challenge and hurdle they've faced until that point in their lives and their determination to learn the skills that others take for granted. You felt thankful that you would never take such momentous occasions for granted.

In it for the long haul

Of course, starting school is just the beginning. The beginning of constant re-assessment and planning for support packages that will go on throughout your child’s life. Their educational career is a marathon not a sprint and it’s important to remember not to burn yourself out along the way.

The very worst part of any of these stage changes for me is the form-filling. Whether it’s a claim for Disability Living Allowance, (DLA), a disability parking Blue Badge or the dreaded transfer from a Statement of SEN to an EHCP, it’s easy to become disheartened. It’s time-consuming, laborious and you are forced to focus on the reality of your child’s struggles and limits; to write them out in black and white, rather that celebrating their strengths and enjoying them for the unique individual they are. It leaves me wanting to shout "SOS!"

The soul-draining transfer to an EHCP

We are going through this EHCP process for Natty at the moment, and I am left with the overwhelming sense that I wish she could receive any reasonable adjustments and all the specialised support required without us having to spend hours putting her needs into words, attending meetings, requesting assessments and reports, forcing us to lose sight of the fabulous brilliant soul she is and reduce her to a set of characteristics, co-morbidities and requirements.

I hate it. I wish it wasn’t such hard work, that it wasn't so dry and boring, so depressing. I wish I could be taking a walk in the sunshine right now, instead of writing letters to professionals. I wish that our society was better geared up for individuals' differences and that everyone could take them in their stride.

Natty's neuro-typical sister seems to swan through school in comparison, as most children without SEND do.  Just the usual hiccups: friendships, dynamics, tests, the wrong kind of lunch. Sometimes life just isn’t fair.

Add to this the fact that asking for any kind of support for your child feels like being in the spotlight as a family. That or being a ‘difficult and demanding’ parent. And when you are quite private, that can feel awkward, especially if you are also simultaneously being kept in the dark.

“Going through the EHCP process is like playing a team game blindfold. A game where you are the only person who doesn’t know the rules.” Steph Curtis, Steph's Two Girls

However, we must be realistic. We must have the grace to accept what we cannot change for now (a system, not our children I hasten to underline). We can’t wish the EHCP away and once put in place; it sets our children on the road to adequate support for the rest of their lives. So instead, we must focus on ways to smooth the process, learn the rules, remove our blindfolds, build our own resilience and aim for the very best outcome we dare dream for.

So what are my personal EHCP SOS Tips?

1: Nurture and Pace Yourself

I’ve put this first because it so easy to become consumed with all things EHCP, to let stress take over and to allow your home life, family relationships, mental health and wellbeing suffer as a result. It is absolutely vital to take time for yourself and your family, to allow yourself breaks. You will be better equipped to see the process through if you can remain healthy and calm. Take short walks, drink more water, try to get some sleep, chat to a friend who makes you laugh and consider saying no to unnecessary commitments for a while. Don’t feel guilty about protecting yourself at this busy time. I’ve all but put my blogging on hold, there isn’t much in life that can’t wait a few months.

2: Find Free Support

There’s a wealth of free support and trusted advice online and within your community, so take advantage of that.

•  - Of course, right here on Special Needs Jungle there is everything from EHCP flowcharts to survival guides and legal advice. Have a thorough read around this SEND oracle.
• - Your local authority should have a Local Offer website that supports parents through their particular regional variant of EHCP.
• - IPSEA the SEND legal charity, not only offer free legal advice, but have an invaluable EHCP checklist on their website. It tells you exactly the kind of information you and your school need to include in every section of the document. It’s clear and simple to work through.
• - SENDIASS provide a free and impartial advice service. Representatives will arrange to meet you to chat through the EHCP process and your child’s needs and may be able to attend meetings with you. They provide excellent moral support as well as practical information. There is one in your local area.
• - Many charities also provide information on what to include in an EHCP for specific disabilities or conditions. The Down's Syndrome Association for example provide a free download on SEN and the Law.
• - Ask friends in real life or on Facebook, who have been through the same process for their tips and advice. Might they let you read through their child's EHCP for ideas? Maybe you get together over coffee to talk about the best way forward

3: Believe in Yourself 

You are a lead professional, you know your child better than enyone else and have probably done so from the very beginning. Believe in what you have to offer and treat this like a job. You might hate asking for anything, you might loathe feeling like a thorn in anyone’s side, but you owe it to your child. You are their best advocate. Approach the task with professionalism even though it may be an emotional time for you.

Little things such as getting all your child’s documents in order, storing letters in a nice new file (any excuse for new stationery I say) and dedicating a shelf or table to house it all might help you get organised.I also keep copies of all emails, letters, reports and any useful research or documents provided for future reference.

4: Consider Bringing in a Specialist

It might be expensive but if your child's case is complex, you might consider letting someone else take the strain. A SEND consultant or legal advisor can help prepare letters and documents if you need to take your case to the SEND Tribunal. Alternatively, you might feel that bringing someone in at an early stage to cross all T’s and dot all I’s will ensure that things go as smoothly as possible from the outset.

5: Children and Families at the Heart of EHCP

Remember that you will get there in the end, so do focus on your end goals. It may take twists and turns, it may test your sanity, but remember why you are doing it. You are doing this to enable your extraordinary ordinary child to be the very best that they can be.

And that is every child’s right.

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Hayley Newman

Parent Advocate/Blogger at Downsside Up

Famous for wearing her heart on her sleeve, Hayley writes award-winning blog Downs Side Up about life with her daughter Natty, who has Down’s syndrome.

She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.

Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.

She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.

Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.

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Latest posts by Hayley Newman (see all)

• Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
• Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
• 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018