A New Hope: The TikTok SEND Parents planning to protest the Government’s failure to support their disabled children

If you were involved in SEND back in 2019, you will have been aware—or may have participated—in protest marches and events around the country to highlight the crisis facing disabled children in accessing appropriate support. They were organised and led by SEND Crisis parents and came as the Commons Education Select Committee was considering what it had heard in its SEND inquiry.

The Government's response to the Inquiry’s highly critical conclusions, published later in 2019, was to launch its own SEND Review. Two years later, the Department for Education finally published a SEND and Alternative Provision Green Paper promising legislative change. In the wake of the loss of the Schools Bill, this year,’s “SEND Improvement Plan” was forced to ditch plans that needed legal changes. In fact, much in it won’t be evident this side of 2025 so it may yet be time and money spent for potentially a whole lot of nothing, considering that 2025 is an election year (if not sooner) and, as polls stand, the political hue of government is likely to be red, not blue.

What was it all for?

Parents, both new or old hands to SEND politics, are rightly wondering what the hell was it all for? Why did we need a SEND Review when the issues were already clear from the multiple inquiries (Also including the NAO and the Public Accounts Committee). Why do families need to wait until 2025 for the end of testing of new national and local “Boards” costing millions that could be used for support instead. There are positives, such as the already-underway Universal SEND Services programme, but proper funding of the system still isn’t on the cards.

It’s against this backdrop that parents of disabled children have again lost patience and decided to take to the streets once again…

Protesting the SEND system again

Four years after the 2019 marches, new parent campaigners are taking up the baton. They may not initially have known the background to the inquiries and Reviews, but the fact they are experiencing the same crisis as pre Children and Families Act 2014, says everything.

These new social media-savvy campaigners have energy, passion, and justified anger at the unfairness of their children still routinely being left with insufficient, or no provision. We are delighted to offer our support to them and have already held one online meeting, with another at 11am on Wednesday 14th June. If you are a SEND parent campaigner or group and would like to join this Zoom meeting, please email us.

Protests by unhappy families have been held outside council HQs up and down the country in recent months and, on 21 June 2023, a parent group called SEND Reform England, their supporters and their children will be again gathering in London’s Parliament Square. It’s the same location where SNJ joined others in addressing the gathered protestors four years ago.

Today, we welcome this new ‘TikTok’ generation of SEND campaigners, SEND Reform England, to SNJ to tell us about the plans and invite you to join them on 21st June.

Join us on 21st June in Parliament Square, London, by SEND Reform England campaigners

SEND Reform England is currently made up of 11 mums, all with neurodivergent children with a variety of additional needs. 

At the beginning of 2023, we were simply each other's followers on TikTok, sharing our days and supporting each other. One team member had shared she was going through some issues medically and in true mum style we banded together to support her. During this time, we moved our friendship from social media to WhatsApp and over the coming weeks became much closer. We found we had an on-tap support system in our pockets as we navigated meltdowns, the system and sleepless nights.

Then at the start of May, our chats became filled with outrage at comments from council officials during a Kent County Council SEND committee meeting. We were disgusted to hear how they were talking about us parents with Kent councillor, Simon Webbe, stating, “EHCPs are the in-thing to do as a parent”. This was definitely a major trigger point. This was followed up by another councillor, Sarah Hudson, stating “…these parents choose this route as they see the add-ons and think, “Well this is good.”  

This sparked a fire in a group of mums who were already at the breaking point of discrimination, ableism, fights and coffee! And in one moment we decided enough was enough.

Learning about SEND politics

We started looking into the last petitions made to the Government and what had been requested. We noticed a very common issue; parents were putting forward petitions saying, “Fund more SEND schools”. To us, this showed a lack of school places for our children versus the mainstream setting. We learned there are around 24,000 mainstream settings compared with only 1,005 SEN settings. With an estimated 9% of children having a registered disability, not including the countless others we know are on waiting lists for a diagnosis, these figures didn’t add up. It was clear to us that a common response from the government was simply a “cut and paste” job. 

We knew the flaws of the current EHCP process because many of us have been through it on more than one occasion and had experienced our own LAs’ failings, along with the multitude of messages weekly from other distraught parents wanting only to give their child an education. 

So we set about digging. The first thing we found was the Government cut and paste response to funding. The claim they were adding £2.6 billion into the special education system between 2022 and 2024 seemed bizarre as we watched SEN schools close due to the withdrawal of funding. When we drilled down we noticed the money was not only insufficient but only available to a small selection of LAs who had requested it. An LA like Kent had not requested this additional funding so they were making cuts, which explained their “gatekeepers” comment as they want to remove many EHCPs.

Then we stumbled upon the Green Paper that came only one year prior to the Kent SEND committee meeting in May 2022. As we started to delve into this we started to connect with others who were on the same mission as us. Talking with parents who sat in on the green paper meetings it became apparent, very quickly, that no one was responding to those affected.

A reform for the reform 

There was only one thing that we really needed! A Reform! It wasn’t just one or two things that needed amendment! It needed a complete makeover and this is where our fight began! 

We started to touch base with other campaigns, charities and professionals all with the same agenda. We soon found so many wanting the same as us across the country and, actually, joining forces with these organisations would greatly increase the chance of actually changing the system for future generations.

Now just over a month on, we have almost 50,000 signatures on our Reform petition showing us the number of people who wanting the change. We have our awareness protest on 21st June, 11-3 at parliament square gardens and further protests in the pipeline for autumn term 2023. 

Our team include mums from a corporate background, teachers and lawyers and even one of the top 50 influential neurodivergent women in 2023! You can find a meet the team on Instagram, @sendreformengland or our Facebook group “SEND Reform England”. You can also email us.

We have been utterly blown away by the support from so many in this campaign and from all of us at SEND Reform we know that joining forces with organisations like Special Needs Jungle only makes us all stronger and achieve our common goal—to make education inclusive and give our children the future they deserve, because we are only asking for what’s already ours.

Our view - by Special Needs Jungle

Many old hands reading the above will recognise the frustration and the initial fire of new SEND campaigners. Cynics know that we protest, we get involved, we get weary and many fall away, exhausted. Then new parents get fired up and take over until they get tired and realise that nothing much really changes. It’s like Groundhog Day while generations of disabled children’s education becomes ever-greater collateral damage.

We all think, at the start, we are going to finally change things. The truth is, this isn’t in our hands, it is largely in the hands of local and national politicians (aided by civil servants). We are limited to making a noise and telling our stories— all gradations of the same basic horror story—to whoever will listen. But as the 2023 SEND Improvement Plan looks less than likely to bring about the real change needed, the noise must continue. We need new voices and new ways of reaching parents who may be feeling alone and isolated.

At SNJ, we applaud everyone who is willing to give up their limited time to protest for something better for their own, and every, SEND child. We are here to support you and to stand with you.

We are tired. We don’t want to still be doing this after 15 years. But when promises are broken, and more families enter the cycle of SEND suffering, we must not give up. It’s a never-ending, marathon relay that we must finally win so families no longer need to feel forced to take up the baton.

We will be there on 21st June. Will you?

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