Disabled children to benefit from extra CTF cash

[MannyMoeAndJack]

here:

www.edcm.org.uk/Page.asp?originx_2272wy_3573196284114d35m_2009422321x

It'll be interesting to see how they decide which dc are eligible for the £200, rather than £100...bet they'll use higher rate DLA (which my ds doesn't qualify for because he sleeps at night - although he is still very severely disabled when he's awake )

DS doesn't get high rate.
But if this anxiety thing goes on much longer I am going to ask them to reassess!

i didnt need to exagerate, i put down a typical day and night and got awarded high rate indefinately! [not sure which smiley that needs?]
altho i think its ridiculous that the difference between middle and high rate (ie sleeping and not sleeping) is only about £22 more, you wouldnt even get a few hours of an agency carer for that never mind a weeks worth!

It's a crazy world. Only today on Radio 2, they were talking about people who claim DLA (turning up to the office in their wheelchair) but then swan off to Spain to dance the winter away .

Why do those who don't qualify always get away with it?! Some fraudsters are very wealthy it seems.

It's the fraudsters who make genuine cases such as yourself feel uncomfortable on 'good' days, whilst they continue to milk the system. The guy on the radio suggested that the neighbours of the dancing DLA claimants should notify the authorities. Let's hope they do.

Riven, you said: "you think a total blind quadraplegic should only get mid rate care because they sleep the night? "

No, and I didn't say that.

I was responding to sc13's comment that people have a huge incentive to lie. And people do LIE - I'm not talking about mentioning a worst night - people actually lie. And then it takes other people 1.5 years to get the right rate!

YOu know, ds3 wakes seven times a night and DLA still give midle- ds1 gets higher because of the nights because he needs supervision which is true but no more than DS3... I think they make it up as they go along tbh.

DS1 of course is too old for CTC's anyway LOL!.

I can't see how your DD Riven shouldnt always get HRC without any assessment whatsoever. You know ds1's history and why he is 'complex' but if your DD didnt get it and he did I would think it was bollocks tbh.

I think the DLA system should remian as it is for HRC becuase ultimately DS1 does almost run our lives but I think there should be a profound disability supplement for cases such as Riven's DD (just picked her as I have met her) who need 100% everything total care. I can't campaign for that as the buggers would just take it away from everyone else and Heaven knows we all need it, but nonetheless that's what I think. Once awarded its for life, as well.

DS3 has an award until he is 16 (but thats probably st stop us getting cover for nights LOL, crafty devils )

Sounds about right Riv LOL, but surely they can work out she has HRM if she has a motability car??????

Or is that too complex for them?

DS3'sfirst award (HRC) at 4 was a year, but on renewal they made it MRC until 16; we appealed recently and had an award of LRM added, but still until 16.

DS1's is now 2 yearly IIRC which is fair enough.

The problem is that 'profound' and 'severe' are not measurable. That means that there will always be these problems.

But GMS our kids could improve and can do some things themselves- ceertainly we need the huigher rate and I dont think man who know our stories woud deny us that, but there is a certain rare levelof disability whewre significant improvement or any development of self care skills whatsoever is extremely unlikely (Although Riv Mark commented how much more aware your DD is now than from our last visit , seems he must have puit down the Rubik Cube at some stage PMSL).

You're right it would be ahrd to assess and I think it would need to be done by someone specific such as a specialist Paed or similar (maybe inked to the hospice movement).

I think the biggest issue would be that the Governemnet etc would jump on it to autiomatically downgrade everything else which would be wrong of course, just because more severe kids exist doesn't mean others of us don't have enough shite to battle. But it still is an effed up system nonetheless. Rivens DD should easily get a lifetime award, nobody in theior sane mind could argue otherwise on meeting themn as a family.

Actually trying to think laterally about a way to approach this that wouldnt cause that downgrade of other children, I wonder if a more useful approach would be to make thingssuch as the Keto diet available of a prescription or for there to be a relevant grant? Something directly claimable and meetinga very real and quantifiable need without adversely affecting those of us with kids needing different support.

Hmmm, i'd keep the current l;abels- otherwise SS etc would simply sue iot for an excuse tor emove services from peolpe bastards but addd in supplementary payments: so you might get one if your child has a prescribed diet, ahs to attend hospital clinics X times in a month (or has averaged it within the last year)..... everyone would be able to apply and we might get for example the diet bit for the dairy but nt the hospital bit

Taking the severe DLA label away would be divisive I think, and negative as it is something real that can get a child a bit of help, but supplements (as with WTC- you can get a Sn payment, new baby payment) might be as good a method as any I guess. And immensely provable.

I'm not talking about J or anyone's child in particular, just saying that words like severe and profound don't ever seem to help people like the DWP make decisions as they're quite subjective.

How do you measure severe or profound? One person's idea of it isn't another's.

I personally think that the day/night thing is pointless and it should be more of a proportion thing. Children who need constant supervision or care when awake or asleep would get the highest rate; those who need a high percentage would get middle and those who need some would be low. But then the percentages would become annoying...I don't know how they can sort it but agree that the current system doesn't work. The mobility criteria is even stupider.

The whole DLA thing is stupid. They are pretty incompetent, in my recent experience, but am hoping that in 5 years, the renewal will be easier as there should be a big sticker on J's file saying - "just give him high rate for both again to avoid Tribunals and compensation payments like last time. And don't annoy the mother again by issuing a letter saying no award as he has no needs."

Agree that lifetime awards should be made for those with little chance of improvement. It did make me quite thoughtful at the Tribunal to be told - here's 5 years of it but we hope that you see some improvements by then because, as you say Peachy, children like ours seem to change frequently...too frequently!

my ds2 gets high rate mobility mid care & TBH i think that mid rate care is probabiy about right. He does have me up throught he nigh most nights but he does have a degree of independence, can feed himself, use the loo etc.

He is 6 has Mild CP, ASD, learning difficulties & few other bits going on his last ward was for 2 yrs.. I can't see the level of support he needs improving by February, if ever, but you never know!

I think there should be a smaller quicker process for DLA reviews.
I also think there should be a premium rate (can't think what else to call it) for the most severely disbaled people.

Ah givreme they change alright (they grow and hit harde, IME anyway)

But anyway PMSL

Quite right about labbels like profound ors evere, crap they are. And the day night thing too- ????? Who knows where that comes from. Even when a child needs 24/7 1-1 it varies between those who have help (eg a partner) and those who don't I am sure (my DH is a blessing to me, should he lose his job next week he's starting some intensive sleep therapy with the ds's with the help of CAHMs)

I dunno, its a hard and awkward thing isn't it? DS3 was awarded HR, dropped to MR and now though his night needs are more definite can we get him bumped back up? Can we heck! I dont mind so much inthat ds1 is harer day to day if less classically severe, but it's bizarre

How about calling the extra payment a lifelong needs award? would that do it?

anon if your child is up nights walking / talking interms of DLA isnt the only tjing- they key ids the supervision: ds1 has a letter from paeds saying he needs 24/7, could you get that? Ds1 looks like any other kid and fundtions physically like one but if you let him out of your sight he could and would happily kill someone. He also ahs suspected eating disorders but I am not even going to think about long term ramiications of that yet, I daren't. Head firmly in sand LOL

It can be an invisible difficulty- I ahd toretrain sam on a ROOG last weekend after he got up there for a meltdown; a minutes lapse in supervision for a loo break,ridiculous.

Peachy, I totally agree that the older J gets, the harder he hits! Also about the ds1 looking normal but being unsafe to ever leave without supervision

J's psychiatrist made it very clear to DLA during the Tribunal and wrote that he needed 24-7 supervision at 1:1 or 2:1 level to ensure his safety and that of others. She also cleared up their 'oh but he's of normal academic ability' defense and said that he is severely functionally impaired so he cannot make use of that intelligence in real life situations. So true. Can do far more with a computer than I will ever be able to do, but can't wash himself, dress himself or behave safely in most situations. So I agree with Riven 's point about supervision being a major factor.

'supervision should be a criteria definately'

Yes, this makes sense to me too. My friend's ds is very severely disabled (profoundly?) but she always know where he is and although he always sleeps through, he gets high rate DLA. Of course, her ds requires supervision but a different type to that required by my ds, who can never be trusted, has a reduced sense of danger, may run for the hills unexpectedly, has zero road sense and so on.