DLA Constant!

[ethel1]

I,m new to mums net,and I was very surprised that in answer to the minute question the recomendation was to say constant. Every child is different,some with greater needs then others.There is nothing worse then having a SLD
child and being put on lower rate than a friends child, who has very mild problems being on a much higher rate, due to the way the form is filled in. Some children might only need DLA for a short time ,others will need that and alot more help for life. There is only so much money in the pot.

Ethel1,

The care for some children (like mine, physically and learning disabled, tube-fed, doubly incontinent, unable to talk or play independently) is constant.

That is who the higher rates DLA is for! If you think your child has been wrongly awarded, then appeal. Mine was years ago, and we did, successfully.

What's the problem?

I'm a bit puzzled by this as well. I don't ever presume to judge how much care someone else's child takes.

I know my own child needs to be watched LITERALLY constantly, and monitored at night. Although we have our routines that perhaps make things look a bit less rigid and careful than they are, it is exhausting. I would be extremely annoyed to have a friend judge what level of DLA we were getting based on what they feel is our level of care for our son.

Of course, it's easy to look at someone else's child on the surface and think "oh they don't seem to need a very high level of care" in comparison to your own. But appearances can be sooooo deceiving.

Are you upset about something in particular or just being judgey in general? If you're referring to the "how many minutes" discussion thread, reread it and note that people were saying various things and nobody was advising anyone to say anything fraudulent or exaggerate any times. They were answering a simple question. I think perhaps you read too much into that.

And sorry, but "there is only so much money in the pot" is a bit of a silly comment. Are people supposed to say "oh there's only so much there, so I won't tell them how bad it really is so there's enough to go around?" That is why there are applications and forms to fill out and people who screen them and evaluate them. Our job is to make sure our children are provided for as best we can.

There are lots of ways to answer the 'minutes' questions.

You may look at my DD1 and think 'she can walk, she can talk, she can sit, she can stand, she can eat, she can drink'

But, I could look at a child who can't walk, or move independently, for example, and think 'at least you know that when you come back in the room, they will still be where you left them...'

DD1 needs CONSTANT supervision. I can't even dice an onion without leaving the kitchen and walking back into the lounge to see what she is doing.

So, how would I answer the question of Minutes? I would write 840 minutes in all of the 'daytime' questions, because DD1 is generally up from 5am 'til 7pm, which is 14 hours.

Any questions regarding 'things I do', I write 25-30 times per day, for 25-30 minutes.

When you have a child who is very anxious, you literally roll from one set of explanations and reassurances to the next.

NOBODY on this SN board would recommend writing something that isn't true. EVER. However, there are ways of writing things that will be clearer than others.

The example I give often (I used to be quite a prolific poster on this board) would be medication.

Say you have a child who has to take epilepsy medication every day. They don't like it, but no meds = seizure.

You could express that as follows:

"I have to give Tommy his epilim twice a day, and he doesn't like it much."

However, you really don't know who is reading the form. They may not have contact with children generally, and they may not have the first clue about medicating a child. So, you could express that as:

"Tommy has epilepsy. In order to minimise seizures, he has to take epilim twice per day. Each time, I have to get a syringe and draw up exactly 7mls of the epilim liquid. I need to ensure that Tommy has had something to eat, or his medication will make him feel sick.

Tommy doesn't like taking his medicine, so he will often run away, shouting 'HIDE'. I have to find him, and encourage him to co-operate. He will often curl up into a tight ball so that I can't reach his mouth. I have to quietly talk to him so that he starts to relax.

Because Tommy doesn't like the taste of his medicine, he will often spit it out. I need to administer the medicine carefully, then watch to make sure he swallows it. If he spits it out, I can't give more because it is impossible to know how much he has had. However, the risk is that if he hasn't had a full dose he will have a seizure, which will put him at risk of injury and prevent him from learning.

Once Tommy has had his epilim, I have to take the syringe apart and wash it in soapy water so it is ready for the next time.

Giving Tommy his medicine takes around 15 minutes from start to finish each time he requires it."

Now, those two parents are doing the exact same thing. Who do you think is going to be building the picture of a child with significant care needs? The first parent has given a 'picture' of a 10-second job. The second parent has already 'clocked' 30 minutes of care.

The criteria for Low rate care is around an hour of extra care needs per day. The second parent is already well on their way.

If you need help to fill in the form, then the SN board is a fantastic place to get guidance. What won't do you any favours is to suggest that parents are cheating the system.

I know a parent of a child with Retts. She said to me "I feel so guilty that I don't spend enough time giving x attention, because she is no trouble at all. She just gets pushed into the background. You must feel the same...'

I responded 'no I feel the opposite. I spend so much of my time saving DD1 from the next disaster, that I struggle to make sure the other two girls get enough attention'

Now, her child is much more profoundly affected than my child, but I know which child is easier to look after, and it isn't mine.

Lougle will you help me sort out my dla appeal, you are fab, I need you.

OP - constant means constant, which means all day, and even all night, some people and children need this, you know, constantly. I am lucky there are some things my ds needs constantlym but there are others he does not, I am sure all carers fill in the forms as best they can, but they are very difficult to do, and very difficult to breakdown the taks that you have to do as a carer into a decription which does it justice. I think Lougle'e examples are a perfect illustration, also of how I went wrong on my form.

SparkleRainbow, of course I would....you would need to let me see all the gubbins though. PM me

i am certainly not judging anybody but I do feel that there is a knack of filling in the forms to get the right level of care.My DD has been on the higher rate for the last 8yrs ,and we will soon be doing the adult form.
I certainly know what constant means, and the older they get the worse it gets.
(the friends child is my nephew who I know very well and good luck to them for getting the benefit)
I would never judge a child who I did not know
because like you say appearances are deceiving.
I totally agree that the higher rate should be awarded to those who need it the most.
As for 'only so so much money' that is what we are told whenever help is needed.

Have just started a thread to find you. I don't know how to pm? - sorry

It's also worth noting that the criteria make two distinct points:

The test is that there are 'care needs' not 'care provision'. In other words, it isn't about the care the child gets, it is about the care the child needs. A child who needs constant supervision would still qualify if they were not constantly supervised and had lots of injuries as a result, for example.

The criteria states that something must be likely to happen. It doesn't have to be a certainty. My DD needs constant supervision whenever she is awake. If she doesn't get it, there is a likelihood that she would climb, fall, and be injured. Even if she sometimes wakes and doesn't climb, the fact that she may climb and is likely to climb sometimes is enough.