Sally's World

I would like to hunt down the person who invented the Disability Living Allowance forms. Then I would like to lock them in a room and make them write ten million lines, something to the effect of, “I will not ask endless, inane questions over and over again.”

I have just spent the last three hours filling in Deion’s DLA forms…and as you may have noticed, I’m not all that impressed about it.

Deion has cerebral Palsy, its not curable, its not going to go away. Barring a miracle he isn’t going to suddenly leap from his wheelchair and announce he can walk. As much as we wish it would happen. And if it did, I can assure you I would ring the DLA people and gladly tell them we no longer needed it. But I still have to fill in the forms. Can’t they just send a single page form to ask if anything’s changed, a phone call even…no, too simple. Even better, if a child has an illness that cannot improve, just leave them alone.

I think they make it difficult on purpose, they must do…I have just answered the same question, asked in four different ways…“does you child need to be changed in the night, and if so how many times, and how minutes does this take, and how many nights per week it is needed?” now, sorry to say, I don’t time this to the second, nor do I time how long it takes me to reposition him in the night, get his pyjamas on or change his sheets should they need it. And NO, I don’t always know how many times I get up in the night, it is often a blur. And when am I even counting from, a normal person’s bedtime, or my bedtime???

The forms are quite frankly ridiculous, they want to know how long things take to the minute, not taking into account that the time for everything varies continually depending on so many things. They are kind enough to say you can estimate it…thank goodness, otherwise we might feel we need to stand with a stop watch trying to improve our times when flushing gastro tubes or changing nappies!

I understand people abuse the system at times and I understand they need details, but proof of a disability, and what it entails should be enough for them to work out the rest. I bet I could ask a dozen questions and get the relevant information. And I wouldn’t ask someone how long it takes to cut up their child’s food, simply saying a child needs assistance at meal times should be enough.

These endless forms need to be simplified. Yes, proof from doctors about a disability, we expect to have to provide. But the rest of it is endless, time consuming, and frustrating. Contrary to what people may think, spelling out every single aspect of our child’s disability over and over again in the minutest detail isn’t all that nice. Even though Deion is a wheelchair user, the forms still require me to fill in the parts that say, ‘no’ he cannot walk one step, ten yards, a hundred yards or further, ‘no’ he cannot get in and out of the bath and ‘no’ cannot go upstairs unaided. Hence the wheelchair people!!!

And sadly, they make it just as hard for you to stop claiming DLA…

When Aaron passed away, I phoned them to inform them, and they wanted proof, I asked her if she was joking, but she said no, and that they wouldn’t stop paying unless I sent proof. I offered to send a signed letter, but it wasn’t enough, they wanted the death certificate, the original no less. I refused to send this, and told her that I was happy for them to continue paying the DLA in that case…and I did put it in writing. Funnily enough, they did manage to figure out how to stop the money without the adequate paperwork.

Every time I fill in the DLA forms, I send them back with a short letter explaining my views, and I have no doubt it goes straight in the trash, maybe if more people did complain, they might take some notice. It wouldn’t even take that long to revise the forms to make them ‘friendlier’ and think of the money they would save…and think of the benefits to the environment, not only could they halve the size of the 40+ page form at least…they could also do away with the extra bulky booklet that tells you how to fill in the form in the first place. If it was simplified, they wouldn’t need a booklet! And quite frankly the booklet just makes it more confusing than ever.

This is a conversation I’ve had with many of my friends, and we all put in out little letter of complaint every time we return our forms, so perhaps you’d like to join us, you never know it might just help. It certainly makes you feel less passive about it I promise.

Take care

Sal xxx