BDA Blogs - Parents of SEND children are struggling in plain sight…and this needs to stop
Monday 15 June 2026
Parents of SEND children are struggling in plain sight…and this needs to stop
We all know there is a SEND crisis, but what about the parents of SEND children crisis? Who is looking at the impact of SEND on parents' careers, and livelihoods?
Having a child with SEND comes with many challenges. No one child with SEND is the same as another - and so any cookie cutter approach to diagnosis and ongoing treatment and provision for children will not work for all families. Some children are not able to attend school, others need a staggered approach to education and others can thrive in mainstream education with little guidance.
Too often, we speak about the SEND crisis as though everyone experiences it in the same way.
When, quite simply, they do not.
We already know the SEND system demands extraordinary advocacy from families. Nationally, around 98% of SEND tribunals are ruled in favour of parents, exposing just how often families are forced into prolonged battles simply to secure lawful support.
But not all families enter those battles equally.
And yet much of the current SEND discourse still presents the crisis through an overwhelmingly universal lens: the system is broken, everyone is struggling and all parents are fighting. While that is true broadly, it flattens important differences in how power operates. Because some families have greater institutional confidence. Some know how to write formal complaints, some feel safe escalating concerns, some can afford private assessments and some have jobs flexible enough to accommodate endless appointments, tribunals and meetings.
Others do not.
And this is where I believe parts of the SEND conversation risk repeating mistakes we have seen before in other social movements.
The fractures in the SEND system are not felt equally. And if we refuse to name that honestly, the solutions we build will continue to fail the families experiencing the sharpest edges of the system. We have to dig beneath the surface and to understand class, race and wealth.
As all parents of children with SEND know, it’s just not enough to ‘fight with love’ - it comes at a cost. Missed school, admin, appointments, and sometimes private appointments because waiting for years is an educational cost that’s just too much to bear.
This is why I am part of a new campaign called Scream And SEND, alongside Joeli Brearley the founder of GrowthSpurt, a fellow SEND mother, Fiona Collins and PR expert Celia Venables.
We are shining a light on the true cost of SEND on parents, we are delivering between the layers of equity and we are looking at those who are being left behind by the one-size fits all system.
To make as much noise as possible, we need to hear from as many parents of children with SEND needs as possible. Please add your voice to this survey and help to show the true picture across the UK.
Agnes Agyepong is the founder and CEO of Global Child and Maternal Health CIC, a Black-led organisation working across maternal health, education equity and environmental justice. She leads research and advocacy on SEND and authored the Black Child SEND Report (2024). In January 2025 she gave oral evidence to the Education Select Committee’s inquiry into the SEND crisis, and in February 2026 she took part in the schools white paper and SEND reform roundtable at 10 Downing Street with the Prime Minister and Secretary of State for Education.
She is a member of the Department for Education’s SEND Ministerial Development Group and a doctoral researcher at the Tavistock and Portman NHS Foundation Trust. As the mother of a dyslexic daughter, whose diagnosis came only after she privately commissioned an educational psychologist, her advocacy is grounded in the everyday reality families face, and has helped shape national commitments that families should not be pressured to pay for assessments to secure their child’s support.