By Georgina Durrant, SEND specialist and National Inclusion Lead at Twinkl
SNJ Intro:
A new survey from teaching resource site, Twinkl, has shown how many hours of unpaid work parents are spending navigating SEND systems and filling in paperwork to secure the support their children are entitled to.
This adds to another recent survey, this one by Sense, underlining the fear of parents that upcoming education changes will strip away this support that they’ve worked so hard to access.
Complex systems of provision are not an accident. LAs and NHS departments have no motivation to work together effectively to make families’ lives easier. That would mean using their own stretched budgets to fund support. Making paperwork onerous, siloing information, denying fiscal responsibility, and blaming parents for not correctly navigating the SEND jungle all delay the need to fund provision.
The result, as Twinkl’s survey has found, is parents spending time and money they don’t have to spare, working many times as hard as they should have to, to access what should be delivered as a matter of course. The government’s purported plans to restrict EHCPs won’t end this; it’ll just make it even harder to get the right provision.
SEND expert, Georgina Durrant, who is Twinkl’s National Inclusion Lead, has written for us about the survey’s fundings and how it means families’ lives are made unnecessarily even harder.
Held Up by Families: The hidden cost of a SEND system at breaking point, by Georgina Durrant, Twinkl
Recently at Twinkl, we ran a parent SEND survey, and while the results didn’t surprise me (and I doubt they’ll surprise you), they absolutely need to be heard. What we heard, loud and clear, is that it’s not processes, policies, and services holding our very fragile SEND system together, but families up and down the country. And at a huge financial and emotional cost.
In their hundreds, parents and carers told us of the many hours each week they spend chasing support for their children, the toll the constant, unwavering advocacy is having on their mental health and wellbeing, and the huge financial sacrifices they make, simply to secure the support their children are entitled to by law.
With the Government’s Schools’ White Paper and SEND reform plans due imminently, many are incredibly (and understandably) worried that, unless something changes for the better, they’ll be left propping up this system indefinitely and unsustainably.
Navigating endless paperwork and complicated support systems
More than seven in ten parents (72%) told us they spend three or more hours every week coordinating care, completing paperwork or advocating for their child. But for 40%, that time jumps to six hours or more. And almost a quarter (22%) are spending more than 11 hours every single week navigating support systems — that’s nearly one and half days each week just trying to get the help their child needs and is legally entitled to.
It’s really no surprise that spending so much time advocating for your child, and effectively propping up a system that is supposed to be supporting them, takes a huge toll on families’ mental health and wellbeing. It’s something I personally don’t think is acknowledged nearly enough. A huge 80% of families agreed or strongly agreed that advocating for their child negatively affected their mental health. Almost 70% of parents reported feeling stress or anxiety every single day as they try to secure appropriate help. When you consider this on a weekly basis, it rises to nearly 9 in 10 families (88.5%). To me, this really shows just how tough things have become (and have been for a while). Families are running on empty, doing absolutely everything they can while navigating a system that so often feels impossible.
The cost is also monetary
And then there’s the financial impact. Three-quarters of those surveyed (76%) said their child’s needs have affected their ability to work. Among those affected, almost half of them estimated that the financial cost to their household totals more than £10,000 per year, through reduced hours, lost promotions or having to leave work altogether. These are undoubtedly enormous sacrifices, especially during a cost-of-living crisis, when families’ budgets are already stretched so tight.
And why is this all happening? Well, I think this statistic from the survey is one of the most telling of all: 95.5% of parents (pretty much all of them) said they have experienced support services being too difficult to access or just entirely unavailable! Families have been left with no choice but to step in, filling the gaps left by a system that simply isn’t functioning as it should.
As I wrote at the start, this survey shows us something many of us already know. It also illustrates that families are acting as case managers, coordinators, advocates, educators and maybe even sometimes therapists. They are doing the work of entire multidisciplinary teams, likely late into the night when the kids are asleep, early in the morning, during lunch breaks and quite frankly when they should be having some downtime. They are doing it because they have no choice, but the reality is that the system is exploiting families, relying on them to hold everything together.
Rights should not be removed or diluted
The existing SEND legal framework needs to be properly upheld and strengthened so it can deliver the outcomes it was designed to guarantee for children, and to protect the well-being of families who are currently carrying an enormous burden advocating for their children.
Ahead of the School’s White Paper, I hope policymakers recognise the reality of these pressures and ensure support is implemented consistently, transparently and with genuine accountability.
Families will always do everything they can for their children; that’s not in doubt. But they cannot continue to hold up a SEND system that isn’t supporting them. Families are keeping the SEND system going when it should be keeping them going.
About Georgina Durrant
Georgina Durrant is the National Inclusion Lead at Twinkl. She is a SEND Consultant, author, speaker and podcaster, as well as a qualified teacher/former SENDCO.
Georgina runs the SEN Resources Blog, sharing activities, advice, and recommendations for parents and teachers of children with SEND. She hosts the SEND in the Experts podcast for Twinkl.
Georgina is also the author of three Special Educational Needs and Disability books.
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Also read:
- Beyond EHCPs: Why Inclusion Needs More Than a Document
- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms
- How health and family support systems are failing children starting school
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
Also read:
- How health and family support systems are failing children starting school
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- How Twinkl Parents are aiming to give SEND families a voice—and some free resources
- When “fine” at school isn’t fine at home: the hidden cost of autistic masking on families
- Why my daughter’s SEND experience means we’ll take this consultation judicial review fight wherever it needs to go
- “Why would anyone in government think that was an okay idea?” #SaveSENDLegalRights
- ARFID: Avoidant/Restrictive Food Intake Disorder is much more than just “fussy eating”
- Professor Brian Lamb OBE: Parent’s shouldn’t have to police the SEND system
- The “enormous burden” of admin and monetary costs to SEND families, supporting a system that should be supporting them
- What schools and parents need to understand about supporting autistic and neurodivergent children
- 10 questions every parent should ask about SEND interventions–Plus a unique opportunity to join QTrobot Autism Research
- Recognition for Renata and Tania as “Women of the Year”
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She is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN - August 4, 2026
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them” - July 30, 2026
- EOTAS Consultation: A further assault on children’s SEND rights with cost saving and reintegration to schools at its heart - July 15, 2026
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