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dla change in circumstances

(10 Posts)
piglettsmummy Thu 27-Dec-12 00:03:24

my daughter received DLA middle rate for care, sh is soon to be diagnosed and I'm aware I will need to tell them. we are starting the long journey also of attempt I to get her diagnosed with SPD and some sort of behavioural problems, (ADHD/ad/as tendencies) will these ,e a difference to the rate of DLA she wold receive? she is only 2 but is in no way dependent excluding sat on the floor playing with toys she cannot do ranging else for herself??

madwomanintheattic Thu 27-Dec-12 00:12:41

A diagnosis does not mean a change in needs - dla is based on needs, the issue just didn't have a label before, so the rate etc won't change.

Your rate will only change if she has a change of needs. A dx does not equal a change of needs, and does not mean she suddenly wakes fifteen more times a night, or requires additional support. The support is based on the time and care she requires, whether they are calling it ADHD/ spd, or general delay. You don't work harder because she gets a label to make paperwork easier.

It isn't harder for her to eat, sleep, play just because are giving it a name. Iykwim.

So, it's the change of care needs you need to report, not what they are calling the disability.

piglettsmummy Thu 27-Dec-12 00:28:32

yeh ano a change of needs it was changes the element , with a diagnosis she will go from having infant apnea to having life threatening condition. also with ejected SPD her need shave altered as she cannot feed herself we have had to step in and start feeding her as she cannot do it for herself . I get so confused over DWP they tell me stuff I have to report that I then find out I don't need to report confused

madwomanintheattic Thu 27-Dec-12 16:33:11

The life threatening stuff is a different issue, because the rates kick in straight away, rather than having the delay.

Surely you have always been feeding her? (Sorry, am not entirely sure what the original dla was awarded for - am going by my own experience where clinical conditions did not change, just the label - ie she was always awake and needing care x amount of times a night, and was never able to feed herself, so a new label didn't make any difference to her care needs. Apols, no idea what ejected spd is and google doesn't seem to help. Mine have obv had a different spd lol!)

If they have identified an issue where she now needs to be tube fed, rather than spoon fed, and it takes longer, or she is on a nocturnal pump which means more care needs during the silent hours, then yes, you need to report.

If you tell them everything, they can't complain - it's the difference in time spent on care that would change her award, though, so they might not 'do' anything with the info. DWP are specially designed so that you have no idea what on earth they want!! It can be helpful to keep a copy of your submissions, so that you can compare what you wrote last time iykwim... Especially if you are likely to need to reapply every three years. They do seem to be being a bit more sensible about awards these days.

Have they offered to refer to a local hospice, out of interest? Some of the hospice support services can be very helpful for parents in this sort of situation?

piglettsmummy Thu 27-Dec-12 17:05:22

its OK by means of feeding her I mean whereas kids her age are eating by themselves she has to be fed as she cannot feed herselfconfused but we think she may have sensory processing disorder that's something they don't no about and I wasn't sure if that changed it too

lougle Thu 27-Dec-12 17:23:20

life threatening and life limiting are different. it will only change if you've been told that they expect her to die within 6 months (sorry, that's harsh, but true), so will apply under special rules. If she 'just' could die, but isn't expected to, special rules don't apply.

lougle Thu 27-Dec-12 17:26:07

It will only go up to high rate if she needs frequent care throughout the day (above and beyond a normal two year old) and waking care of 20 minutes or more, at least three times per night, or 1 hour or more in a block, on at least 5 nights out of 7, again over and above that of a usual two year old.

madwomanintheattic Thu 27-Dec-12 17:35:27

Oh, it is the same spd. Sorry, I was confused.

If she wasn't feeding herself when you did the original application, it isn't a change of circumstance, and you will be completing another form prior to her third birthday, which will take into account the difference between her peer group with their newly acquired skills. (Ie she has never fed herself, so they will already know that. It isn't a change of circ).

Presumably the issues you are now suspecting may be labelled spd were also present and commented on when you did your initial form - ie we have never called dd2's spd 'spd' in a dla form, but we have commented on the actual problems and what we have to do to support them. Ds1 has some sensory issues as well, but we have never bothered to complete dla for him (he has ADHD, anxiety, aspergers traits and phobias). So for dd2 we couldn't take her anywhere because the noise meant her Moro would kick in (she has retained reflexes) and she would clap her hands to her ears and fall to the floor - this was at about 4-6 and she was using a walking frame, so to cover her ears she would let go and collapse... We then had to carry both her and the walking frame to somewhere safe etc, calm her down, and try again. Supermarket shopping made her scream as the lights hurt her eyes (when she became verbal around five she told us- if we had known it was the lights before we could have fixed it - she just wears sunglasses to the store lol).

She has always been touch sensitive from birth, so dressing/ changing nappy etc was a nightmare and took at least twice as long as a regular kid. We couldn't do baby massage as she was so touch sensitive, but needed to, to try and desensitise her to touch, so the time spent carrying out massage therapy to a screaming agitated bundle of baby, and calming her down afterwards, also went onto the form. I'm guessing you did similar, unless she has only just started becoming sensitive to noise/ light/ touch or sensory seeking? We've never called it spd on a dla form, tbh. They knew what issues she had, it didn't occur to me to tell the, what it was called. (Dla isn't based on dx at all, just care needs, so a name won't really matter?)

So, the feeding stuff (2yos aren't expected to be independent eaters, they are expected to have an adult present and helping) won't change award. Once you complete the update for the age three (to determine mobility award etc) they should take into account that she still isn't - although tbh 3 yos are still expected to have an adult present when they are eating etc. If you have an OT on board (I am assuming you do) self help skills such as feeding are really generally targeted around 3 or 4, so at that point you can expect the OT to start focussing on this - ie they will usually do an updated fine motor assessment, and try and suggest some specialist cutlery that can help. There is so much available, from regular spoons with bigger grips, to curved utensils for children with poor wrist function. They will also suggest lots of exercises (essentially hand over hand training with you behind dd) to model movement of spoon to mouth, in the hope that she will move towards independence.

If she has no purposeful hand function at all, then obviously this will be reflected in your application. (Hand to mouth stuff is very interesting, btw - can she put her fingers or hand in her mouth? It's one of the first ways that babies and toddlers start learning about the world - and leads to understanding as well as promoting oromotor development) they then obviously progress through the 'normal' developmental stages of mouthing objects, if they have functional movement - all important developmental stages.

Dd2 couldn't put her hand in her mouth - so didn't get any of that initial stuff, so we also had to try and gently bend her arm in that direction in an attempt to facilitate it for her - we had varying success!! Obv then we had to provide toys etc for her to try and mouth... Tbh it was all a bit pants as she had v poor oromotor as well as limited fine motor. Anyway, it might give you some idea about how to write up stuff on the form. (We had to feed her at night as her muscle tone was too high to coordinate swallowing and breathing during the day, lol)

DLA forms are notoriously hard to decipher, especially the changes bit. Cerebra has a great guide that will give you some hints too.

piglettsmummy Thu 27-Dec-12 18:21:16

Thanks, no Spd wasn't mentioned on her originally form only because we thought at the time we cud only talk about her respiratory condition. She needs quite a bit of help in the day with little things but probably nothing that counts. I will check cerbra out smile

lougle Thu 27-Dec-12 19:16:17

It's nothing to do with 'what counts' smile

DLA is really simple for children. There is one single test:

'Care required is significantly more than that of typical peers'. So, anything you do for your DD that is either different from or significantly more than that which you would do for a 'normal' 2 year old counts.

However, how much it counts will depend on how it all adds up.

Low Rate Care: Up to 1 hour of extra care needs per day, but not at night.
Mid Rate Care: Care is 'frequent throughout the day' or at night, but not both.
High Rate Care: Care is 'frequent throughout the day' and either 2 or more episodes of care at night, or one single episode of care lasting not less than 20 minutes (I got that wrong in the last post, sorry). Bearing in mind, though, that it can't be an episode of care that would be typical for a 'normal' 2 year old.

So, if you already get Mid Rate Care, they've accepted that you have to look after her a lot in the day time or they've accepted you have to tend to her at night. If you want an upgrade to HRC, you'll have to show that she now needs attention (in excess of a normal 2 year old) both during the day and at night.

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