Every parent of a child with additional needs knows this truth: it’s not just the system that’s broken—it’s what it costs us to survive it.
While mainstream conversations focus on EHCPs, assessments, and school placements, what rarely gets talked about is what it costs families behind the scenes: the careers we give up, the therapy we pay for out-of-pocket, the lost friendships, the endless admin, and the constant emotional toll.
The Unspoken Costs:
- 💸 Private Assessments: Because NHS waiting lists are years long
- 💔 Relationship Strain: Because exhaustion replaces connection
- 🧾 Lost Income: Because someone has to stay home, fight the LA, and pick up the pieces
- 🧠 Mental Health: Because watching your child be failed again and again is soul-destroying
Many of us never planned for this. We didn’t budget for being full-time caseworkers, therapists, and advocates. We didn’t know we’d become the experts in a system that treats us like we know nothing.
What Needs to Change
✅ Funding must match need – Families shouldn’t have to bankrupt themselves for basics. ✅ Recognition of parent-carers as professionals – Because we’re doing the work of a dozen systems, without pay. ✅ Simplified access to financial support – DLA, Carer’s Allowance, transport grants… the burden shouldn’t be on us to decode it all.
You’re Not Alone
If you’ve ever skipped your own dentist appointment to fund an OT session… If you’ve cried in the car park after another school meeting… If you’ve sat up at night writing complaints when you should be sleeping…
You’re not just “coping.” You’re carrying a broken system on your back.
And you shouldn’t have to.
AskEllie exists to take some of that weight off. Free tools. Templates. Step-by-step support. Built by parents, for parents—because you shouldn’t have to do this alone.
Come see us at AskEllie.co.uk
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