My friend’s child still needs the same help he needed before. The difference is that his Disability Living Allowance has gone down. So what, exactly, is my friend supposed to do with that?
She’s challenging the decision to move him from middle-rate care to lower-rate care. She filled in around 50 pages explaining what he needs across a whole day. The explanation she got back focused on 10 to 15 minutes of prompting to get dressed. I keep coming back to that. How do you read everything a parent has written about a child’s day and come away talking about a quarter of an hour in the morning?
And can we talk about that form for a minute? Some of the parents and carers filling it in have additional needs themselves. They’re being asked to organise evidence, remember examples and explain what happens across an ordinary day, one box at a time. My friend’s child has language difficulties. They go with him from one box to the next. They affect how he understands instructions, how he works out what’s going on around him and how he explains when he’s confused. Getting dressed is one part of his day. He still has the rest of it to get through.
That’s what I find dehumanizing. A condition can affect every part of someone’s day. When you reduce a person to a list of tasks and a few minutes of help here and there, you lose sight of the whole person. And once you’ve done that, it’s easy to dismiss the support they need to get through the day.
“The more I learn of government systems, the more I realise how ablist they are when it comes to offering accessiblity and support to people with disabilities.
adhd Girl
He’s restless and would happily spend a lot of time on his iPad. I get it. My friend also wants him to have ordinary experiences away from a screen. Going somewhere unfamiliar, asking for something himself, having a go when he doesn’t quite know what to expect. Those experiences give him a chance to get more comfortable in the world he’s going to live in. He goes to a mainstream school, which can make the extra help he needs easy to miss. His condition already limits him in some ways. Why should his opportunities be limited too?
That takes time, planning and sometimes money. Take some of the money away and the care still has to happen. The family has to work out what it can afford, what it can fit in and what has to give.
What are we being asked to get angry about?
I’ve seen headlines that make the amount spent on disabled children sound like something we ought to be furious about. There’s a big number and plenty of room for outrage. How much room is there for what that money actually helps a family do?
I understand why the government needs to check claims. If someone’s taking the piss out of the system, by all means deal with it. But how does making an already demanding process harder for people who genuinely need help solve that? And why are parts of the press clapping along as if every extra hurdle is a victory for the taxpayer?
Children’s DLA and PIP are separate benefits. The PIP review is supposed to improve how the benefit works, and it has to work within official spending projections. That makes me ask whose costs we’re looking at. If a family has to find more time and money to provide exactly the same care, that cost still exists. It just lands somewhere else.
And if ministers are worried about how much support people need later, what are they doing to get help to children earlier? In England, the government has started rolling out Experts at Hand, with around £1.8 billion over three years to bring specialist help, including speech and language expertise, into mainstream settings. The first year is mainly focused on group and whole-class support. So how quickly will a child who needs individual help actually get it? What happens to that child in the meantime?
“The government are quick to cut services but not so hot when it comes to offering early intervention. Do they not realise the two are linked?
ADHD gIRL
Early help can make a difference to how a child gets through school and how confidently they take part in ordinary life. Some children will still need financial support, care or therapy for years. I’d like us to judge early intervention by what it makes possible for those children.
If we’re talking about money, let’s talk about money
HMRC estimates a £2.3 billion Corporation Tax gap for large businesses in 2024–25. That’s the estimated gap between the Corporation Tax due under the rules and what HMRC expects to collect. Where’s the same outrage about that?
If ministers want to talk about protecting public money, I want to hear what they’re doing to collect the tax that’s already due and how they’ll be held to account for it. A parent can be asked to account for every minute spent getting their child dressed. We can surely ask ministers some equally direct questions about billions in tax.
I don’t care which party is in charge. I care whether a child gets the help they need and whether the people making these decisions understand what happens when that help goes. The next morning, my friend’s child still needs support getting dressed. And once he’s dressed, he’s still got a whole day ahead of him.
On a final note, if you’re UK-based, Happy Bonfire Night! Let’s celebrate the fact that Guy Fawkes didn’t succeed in overthrowing the government.
