Here some suggested organisations that offer expert advice on SN.
DLA terminology - "supervision&qu
I am in the process of appealing against LRC.
DS4 is 4.6y and has AS.
In all honesty, he doesnt have a death wish - he would just run across a road or wonder off (he went missing in Meadowhall for half an hour and didnt seem one bit perturbed!), but unlike DS1 is unlikely to try and hang himself, eat batteries, jump in a pond or cut his fingers off with scissors.
However he is extremely anxious and needs constant reasurrance and persuasion - to get dressed, to cross a path, to eat, to drink, to sit in a chair thats not been deemed "his", watch an unfamiliar programme or visit an unfamiliar place (he still uses a Major, but its not thru transport issues - hes terrified of new places and lots of people) etc. He has routines which help him, but he needs an awful lot of input to get him through the day in one piece.
TBH night-times arent much better, he suffers nightterrors and nightmares, presumably because of his high anxiety levels. He doesnt sleep well (11pm - 5.30am with approx 2-3 - 7-8 wakings per night).
My question is (and thanks for reading this far!) does 'supervision' mean just to stop harm to themselves or others, or is it a catch-all phrase which would cover the kind of help DS4 requires?
Decision Makers' Guide
Did you get any help with filling the form in?
One thing that is crucial to know is that the decision maker is not allowed to presume anything, so if not explicit, they can't award it.
For example, night times. The fact that he wakes is not enough to qualify. The issue is whether he needs you to intervene to keep him safe. So when he wakes what happens? What do you need to do? What would happen if you didn't?
Eat/Drink - what do you do/say? How long for?
Daytime-wise, the things you do are definitely covered, but, as Lou says, the nighttime rules are stricter and reassurance after nightmares etc. unless he would put himself in danger would probably not be covered as much as active protection, changing of sheets etc.
the cerebra guidelines for nighttime when i did it were that had to wake for min of 20 mins 4-5 times a week between 11 and 7. DS got nighttime rate because he is wakeful in night (not distressed) but loud singing / reciting / echolalic for large chunks of night and needs settling or wakes up his brothers. So not sure DS need to be danger or distressed fact that he woke everyone up and needed attention to settle back to sleep was sufficient in our case.
DD1 is variable. Tends to wake every night at some point, but how much we have to do varies. I wrote a description of what each of the nights were like, and pointed out that even on the best nights, when we could resettle within 10 minutes, we then had to stay awake for at least another 15 to ensure she had actually settled. We got HRC.
I did put down explicitly his night-time rituals/problems.
he needs on occasion to be changed in the night. But more so that he needs reasurrance that his dreams arent real, needs calming, guiding back to bed, and needs his bedcovers/blankets/blankie/pillows placing in a just so fashion... up to around 8 times (or so) a night, every night.
i took copies of everything i sent, will check on times/occassions per night, will check what i put...
getting in/out of bed (putting him to bed)
around 10/25 times (putting him back in bed), 5-10 minutes on each occasion.
Help needed thru the night
around 8 times a night - between 10 and 30minutes each occasion.
The problems again, as with daytime, are not of a dangerous viewpoint, but more of reassurance/calming and persuasion need. (didnt actually write it in those words, but noted how much/type of help needed)
They stated that they thought he was entitled to LRC as "he needs up to an hour a day help with toileting"... if only!!!
Any thoughts would be most appreciated.
Will also check out those links, thanks!
Would it help to see what I put, to compare, at all? If it is similar, you could simply assert that the info wasn't taken on board ('cos if we got it with similar info, logic goes you should have done, iyswim)
Thanks LOU, just reading it now:
"to satify the disability conditions for the care component of DLA the person must need from another person: 1. Attention 2. Supervision 3. Watching Over."
which would suggest that it is covered, however continuing to read...
"The day Condition"
the day condition is satisfied if the person is so severely disabled physically or mentally that, they require from another person: 1. frequent attention throughout the day with bodily functions, 2. continual supervision throughout the day in order to to avoid substantion danger to themselves or others"
"the nightime condition"
Basically says exactly the same sort of thing, but for nighttime.
Interestingly it does state what 'bodily functions" are: (61101) " Attention is defined as some personal service of an atcive nature in connections with bodily functions, including breathing, dressing, drinking, eating, elimating, waste, GETTING INTO OR OUT OF BED, hearing, seeing, blah blah or getting undressed."
"attention must be provided in the physical presence fo the disabled person and will generally involve physical or personal contact. <do hugs and reassurance count there, i wonder?>. It may also be iven by means of the SPOKEN WORD, only where there is physical presence."
It then describes examples: 3. encouraging a person with a mental disability or illness to EAT< WASH< DRESS< or some other activity where he would not otherwise do so. it then mentions differences between "attention" and "merely assistance" in connection with 'bodily functions'.
So, spoken word in the form of persuasion and/or reasurance to complete bodily functions (ie washing, dressing, eating), without which the person with the disablity would NOT do, counts then! wether or not that person endangers themselves or others.
Sorry to ramble!
That link is invaluable, thanks lou!
That's right, and I think it is the key. Not just to say what we do/how/why, but what the result would be if you didn't. So, dehydration, illness, etc.
Glad it helps, let me know if you want me to pass over that info (it's in word, so easy to do).
LOU, sorry was busy reading and missed your post - yes, it would be brilliant to have a look at yours
Incidentally both DS1 (who has ADHD and a death wish) and DS5 (who is autistic, and also with a death wish half the time) both receive DLA at the correct rates. However, i did not want to lie about DS4 being a dangerous spirit, and truly believe that he does require so much more care than a typical 4.5y/o. But he needs continual persuasion and reassurance rather than supervision.
IE he needs co-ersion to get dressed (hes tactile defensive). He needs constant reminders and encouragement to eat breakfast. He needs reassurance that we are going the right way in the car to school. He needs persuasion to get out the car when its raining, or to get IN the car if the car is wet! He needs persuasion to go for a wee, reassurance in the toilet that its "safe". He needs encouragement to accept food thats touching on a plate, and needs persuasion to eat it. He needs encouragement/persuasion and reasurrance throughout the day to complete daily essential tasks (eating, dressing, and even staying in bed, or going back to sleeep), so as you see its really not a matter of danger....
sorry x-post again!
OOOh i didnt think of it that way at all!
Thankyou, thankyou, thankyou!
No probs. Don't have CAT so you could mail me on lou031205 at googlemail dot com & I will send it
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