Parent carers protest as 92.3% say engaging with their local SEN Team was “actively detrimental to their mental health”

With CWaC SEND Accountability campaign group, Cheshire West and Chester

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Parent carers shouldn’t have to protest, they’ve got enough to do caring for their disabled children. But, angry at their treatment by local councils and increasing numbers of children failed by the SEND system, many parents are setting up or joining independent SEND parent campaigning groups. There is power in working together to effect change, as we saw recently with the parents who campaigned against the LA safety valve proposals in Bournemouth, Christchurch & Poole (BCP).

Today, we bring you a guest article from parents in Chesire West and Chester, whose campaign group CWaC SEND Accountability has just protested outside their council. If their story inspires you to do similar—or you are already forming or are part of a local SEND campaign group, let us know!

Protesting SEND provision in Cheshire West and Chester by CWaC SEND Accountability

“Over the course of three hours, we had approximately 80 attendees for our protest. It was a really powerful, emotional day. The Leader of the council came down to meet families, along with other councillors.”

Although the CWaC SEND Accountability group is very much a community movement, a point of genesis was when Ali (parent/carer to two children) received a message from a stranger on Facebook. ‘I’m absolutely desperate’ the message read. The message was from Kim, who was in the thick of the EHCP process. Her son, Jacob, who is autistic with significant sensory needs and a speech delay, had been recommended for mainstream schooling, despite Kim knowing he required a specialist setting for his needs to be met.

Ali had been through the EHCP process a few months earlier and experienced similar difficulties with the SEND Team ignoring her pleas for help and clarity and breaching statutory time frames. Ali’s child couldn’t access nursery because of the complexity of his needs. He was essentially housebound due to his high levels of anxiety and his acute sensory needs. Ali says, “My family were in acute crisis. My child couldn’t leave the house due to his anxiety, I had a newborn baby, my mum had just died very suddenly and I was just pleading for help on a basic human level, but was resolutely ignored. I look back and will never forget how powerless I felt as a parent, at a time when my son’s welfare rested so heavily on getting this process, this document, and this schooling decision absolutely right’.

We became friends, bonded by our mutual trauma of securing schooling and support for our children. We then met Sam, who was in the middle of her own battle with the SEN Team and soon found ourselves as a trio, supporting other parents going through similar experiences. The same themes kept coming up in our conversations – negligent communication, legal obligations disregarded, no transparency, and no integrity.

Widespread damage to families

To understand if the issues we were facing were more widespread, we surveyed 52 families in Chesire West and Chester LA to determine the extent of the issues.

Worryingly:

• 92.3% of respondents said engaging with the SEND Team was actively detrimental to their mental health
• 92.3% of respondents said the SEND Team were negligent with their communication
• Only 3.8% of respondents said they trusted the SEN Team
• Only 3.8% of respondents said the SEND Team were transparent
• 82.7% of respondents were aware of the SEND Team breaching their legal obligations

‘It’s a real community movement’

Once we realised the extent of the problem, we knew action needed to be taken and CWaC SEND Accountability came into being. More families have become involved via social media and we now have a committee of nearly 40 parents organising the protest event that took place this week.

What do we now hope to achieve?

The growth of the CWaC SEND Accountability movement has been bittersweet: positive, in that a community has grown, but sobering as the extent of the trauma incurred by families becomes apparent.

We feel this is the cathartic moment these families need to hold the SEND Team accountable, to say, ‘This happened to me, and my family matters’. However, we also think 2024 may be the year for productive dialogue, and meaningful change to the CWaC SEND landscape. To this end, we have drafted a manifesto, setting out our vision for meaningful systemic change.

This is a brief summary of points included:

• Parents knowing when panel meetings are taking place, who is on the panel and what their job roles are
• Parents being informed when their child is going to be discussed at a panel meeting, with minutes provided
• Local authority-based decision-making criteria for statutory decisions to be made public
• An independent family liaison officer who keeps families up to date and responds promptly to queries
• Opportunities for debrief sessions following decisions being made
• Accountability for breaching statutory timeframes
• High-quality EHCPs
• Clear communication
• Training for the SEN Team and other professionals, to ensure adherence to legislative duties
• Opportunities to visit schools to support parental decision-making
• Service Level Agreements to be published to promote accountability

For more information:

If you are a parent/carer in the Cheshire West and Chester area and want to get involved in our work, you can get in touch via email, Facebook, and Instagram

Also read:

• Parent campaigners: We must suspend the SEND Safety Valve programme: Here’s why, and how
• How local SEND campaigners saw off their LA’s SEND Safety Valve plans—and how you can too
• “He’d be cheaper in long-term care” I was an LA SEND Manager forced out over disgusting comments from senior colleagues
• The parallels between the subpostmasters scandal and the institutional gaslighting aimed at SEND parent carers
• The Children and Families Act, 10 years on: Stephen Kingdom “The DfE didn’t do enough on implementation”
• Ofsted Area SEND Inspections: How bad does a council have to be to fail?
• An update on the DfE’s Change Programme—plus another SEND funding announcement
• EHC Needs Assessments 2023: Who’s asking? SNJ’s FOI data finds it’s mostly NOT parents…

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Sharon Smith

Co-Director at Special Needs Jungle Ltd

Sharon Smith is a co-director for Special Needs Jungle and is the mother of a young lady who has Down's syndrome. Sharon undertook doctoral research at the University of Birmingham, exploring inclusion with parents of disabled children. Following successful completion of her PhD in 2024, Sharon can now call herself Dr Smith, but rarely does. Her research interests include risk/vulnerability, belonging, co-production, inclusion and philosophy of education.

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Latest posts by Sharon Smith (see all)

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