When the System Lets Your Children Down

If you've been following along, you'll know a little of our story by now. The NICU, the diagnoses, the PEG feeds, the therapy sessions, the cortisol deficiency, the cerebral palsy. You'll know that life in this house has never been straightforward, and that Darren and I have become experts at navigating systems that weren't designed with families like ours in mind.

But this week something happened that I genuinely wasn't prepared for.

Max and Teddy were with a childminder. It was working, or at least it was getting there. And then we found out she was leaving childminding altogether to pursue a different career. It wasn't personal. She wasn't asking us to leave because of the boys or anything we had done. But the outcome was the same. We had to find somewhere else, and we had to do it quickly.

I don't think people fully understand what that means when your children have additional needs. It's not a case of ringing a few nurseries and getting them booked in for the following Monday. You make calls and people say no. You send emails and people don't reply. You visit settings and you can see in their faces that they're unsure, that they don't know if they have the capacity, the staff, the confidence.

Most of them say no.

We've been turned away more times than I want to count. And every time it happened I had to swallow it down and keep going, because what's the alternative? You don't get to fall apart. You just keep making calls.

Eventually, we found them a place. A nursery that said yes. That actually wanted to understand the boys, that was willing to put things in place for them, that showed up every single day and gave them everything they had. Finding that felt like finally being able to breathe.

Then we hit a wall.

The nursery applied for the Disability Access Fund. If you're not familiar with it, DAF is funding that exists specifically to help early years settings support children with additional needs. It covers things like 1-to-1 staffing, specialist training, and professional meetings. It exists for children exactly like Max and Teddy. In theory, it is the system doing what it is supposed to do.

Kent County Council rejected the application.

The reason? DAF had already been claimed for the boys during the Autumn Term by the previous childminder. One claim per year, per child. That's the rule. It doesn't matter that we didn't choose to leave. It doesn't matter that the childminder moved on to a different career and we had no say in it. It doesn't matter that the boys' needs are exactly the same as they were when that money was first claimed. The funding stays with the old setting. The new one gets nothing.

The nursery is now absorbing those costs themselves. To put some numbers around it, children under three are funded at £8.23 per hour. Once they turn three, that drops to £5.68 per hour. Across 24 hours a week, that's a difference of around £800 to £900 per child, per term. The nursery knew the rate when they took the boys on, but they took them on because they were told DAF would help fill the gap. That expectation has now been completely removed.

They are a small setting. They don't have the reserves to keep absorbing this indefinitely. And I am scared. Properly scared. Because the thought of losing their place, of having to start that search all over again, of sitting back down at my phone and making all those calls again, makes me feel physically sick.

I've contacted KCC. I got nowhere at first, which is honestly what I expected by now. I tried again and eventually spoke to someone who escalated it to a funding specialist. I'm waiting to hear back. I've also written to our local MP, Tom Tugendhat, to ask him to raise this at a national level and push for DAF policy to be reviewed. There needs to be a provision for situations like ours, where a family is moved through absolutely no fault of their own, where the funding should follow the child.

I will keep pushing, because that is what we do.

But I want to be honest about something.

I am tired.

Not the tired that a good night's sleep fixes. The kind that lives in your bones. The kind that's been building since the day the boys were born and hasn't really stopped since.

Since that day, we have been in a constant cycle of fighting. Fighting for diagnoses, fighting for therapy, fighting for equipment, fighting for support, fighting for understanding. We know this will never stop. We accept that and we would do it a thousand times over because Max and Teddy are worth every single second of it.

But moments like this one, where you do everything right and the system still finds a way to let you down, are genuinely crushing.

And this is the part I can't stop thinking about. A child without additional needs moving nurseries wouldn't cause a funding crisis. The transition would happen and life would continue. It is the fact that Max and Teddy need the support that made DAF necessary in the first place, and yet it's that same need that makes them more vulnerable when the funding falls through the cracks.

Disabled children are not being treated equally by the systems that are supposed to protect them. I know that's not a new conversation. But it needs to keep being said, loudly, and by as many of us as possible, until something actually changes.

If you're navigating something similar, whether it's DAF, your local authority, a setting that turned you away, or just the relentless weight of advocating for a child who deserves so much more than they're getting, please know you are not alone in this.

My inbox is always open.

And to Max and Teddy, as always, everything. Every single fight is for you. 💙