dla hemiplegia?

[em83]

my son has hemiplegia, i have been refused dla for the 3rd time... im not going to bother applying or appealing .
just out of interest does anyone whos child has hemi get dla?

dx largely irrelevant - how much is he affected? does he require physio/ ot etc? have specialist equipment that he needs to use for daily life? are there things that he is unable to do or needs a lot of support to do in comparison with his peers? (and are you/ someone else providing that support/ equipment?)

ie if he goes to beavers, does he require additional support to access the programme? does he use mobility aids of any kind? have school had to put in place additional support to enable him to access the curriculum?

does he need modified cutlery/ crockery? (dd2 had bowls specifically designed to be used one-handed for example, with one low side for cutlery access, and a high side to scoop against) can he dress himself? can he use zippers/ buttons? does this take additional time? do you have to buy specific clothing to encourage independence? have you had to purchase an extremely expensive sn trike because he is unable to use an ordinary bike, etc?

does he have social difficulties/ shyness/ confidence issues as a result of his disability? has he had an ed psych report?

i'm sure you know all that - but there would be some reasons why one child with hemi would get dla and another wouldn't... it isn't the dx itself that rubber-stamps the award (although it can help...) did you write the application from the 'worst case' perspective and enclose up to date reports from all specialists involved?

thanks for relpy, im not sure what you mean by dx?

yes to most of your questions above, wrote about worst case , by reports,do you mean hospital letters? because they are very brief

ds is mild to moderately affected by hemi .

oh, sorry - 'dx' is just lazy shorthand for 'diagnosis'.

by reports i meant more therapists reports than a paed/ consultant letter really, so reports that show what ds's specific difficulties/ support requirements are - so for dd2 the physio and ot reports are the most important, because they specify the difficulties she has with fine/ gross motor, and the areas they are working on in therapy sessions to help.

(sorry, don't know old ds is so not sure what would be relevant) dd's ot is currently working on dressing skills for example (dd is nearly 7) as well as pencil work for school. she'll have a lap top from september but we (and school) are keen to maximise her pencil work even though we know it won't be possible for her to continue this into juniors - we want her to be able to sign a cheque lol )

the ot report would obviously talk about equipment too - so stuff you have on loan from the pct as well as stuff that is not supplied and you have to purchase yourself or get charity funding for (bikes etc)

obviously mobility is a big one as well - not sure how much his hemi affects? obviously if he is a full or p/t wheelchair user that's obvious, but walking frames or afos/ gaiters all need to be listed. or if he is mobile but slower/ falls often/ needs support to access climbing frames in the park/ holding hands when he's walking down the road to stop him from falling (and he's old enough for that not to be the norm lol) then all that needs to go in. so it wouldn't be exceptional if he was 3, but would be unusual if he was 7 or 8...

(again, this is all probably sucking-eggs stuff - just clutching at straws to see if i can work out why you might have been refused so many times)

he is nearly 8 - sorry !

we dont have anything on loan from ot, infact he doesnt see an ot, although i have asked to be refered back to ot as he is getting older and the gap gets more woder between him and his peers,he gets support at school from a lady whpo is part of the speech and language team {who also used to be an ot} and she is great, she has introduced special cutelry and scissors into school, although he can talk like any 7 year old, he sees a speech and language therapist as his understanding of words is immature..
he wears a splint and also has a night time splint and insoles in his shoes, he can walk however has to use my dds puschairs after a shortwhile as his leg gets tired, my dds are 2 and 3 therfore the puschairs not always going to be an option, i asked physio fpr a wheelchair, she said thats not a good idea as he is so independent !!!
as for reports i dont have anything of the sort , am i meant to have these? sorry im asking lots of questions but im clueless
he falls quite regularly and needs lots of help climbing slides and frames.
he toe walks on hemi side.
i also think he has some kind of behavioural problem but no one ever listens to that, nor will they tell me if he has a learning difficulty, which i really think he has - his recent sats results he scored below average

I don't know anything about hemiplegia, but have a look at the Cerebra website - they have a fantastic guide on there about claiming DLA. A lot seems to hang on a child needing significantly more support/ encouragement than another child of their age - Cerebra explain it really well.

From what you have said mobility is also an issue and again the guide explains this and how you need to word things.

Apologies if I am repeating what you already know. There are several people on here who have appealed successfully (without necessarily having to go as far as tribunal) - hopefully someone else will be along who knows better than me. May be worth posting again after the hols when more people are around.

thanks for taking the time to reply ampersands i had a quick look at cerebra a while ago but and will sign up at some point today

i would go back to physio and ask for a wheelchair services referral - you only need a Maclaren Major for when he's tired - at 8 he shouldn't be forced into using a toddler's pushchair. (They come up on e-bay reasonably cheaply if you don't want to wait.) or has he had ortho referral? who does he see re splint/ insoles etc? they might do wc services referral too. tell them it's for day trips/ school trips when he can't keep up. if you explain that the gap is widening between him and his peers and you want to be pro-active. keeping up on school trips at juniors is fairly important? what would school say?

it is tricky - dd2 is very independent these days, but there is a point where she just goes 'game over' and needs wheels.

re climbing frames etc - you need to get across that he needs constant support for his own safety and that of his peers.

how much physio are you doing a day to relieve spasticity in his affected leg? has anyone suggested botox? (all this stuff needs to be in there - the daily routines and how much time they take) does he take baclofen or any pain killers for spasms etc?

i've not seen the cerebra guide, but it's supposed to be good.

stick with it x

thanks again for replies.
physio has already said wheelchair is out of the question, so i was thinking of buying one anyway .
he would get no extra support at school to be pushed around in a wheelchair, anhow i really dont think he would go in a wheelchair for school outings, bless him i think it hurts more than he lets on
no painkilers either, he has a short 15 min excerxise program to be done before he wears his splint, however he is not keen on the splint....
do you get dla for your daughter ? mobility?
how much is she affected?
[nosy emotion]

em83, DLA really is a 'tick box' thing. They have set criteria for each of the 3 care rates and 2 mobility rates. If your child meets the criteria, and that is demonstrated on their DLA claim form, then they get awarded the rate.

Low Rate Care is awarded if care needs are for an hour per day. But you have to show:

a) That the care needed is significantly more than the care of a 'typical' child of your child's age would need.
b) What that care is, and how your child is affected, and why it is needed.

dd2 original dx was spastic quad and we were told that she wouldn't walk/ talk etc, she was born with no suck/swallow and was ng fed etc. she was awarded dla very early, (and without a dx originally - just very high care needs) and so she's always had physio/ slt and ot requirements, which have downgraded over time as she has become more able (way more able). so for us it was easier because she was awarded high rate and mobility, and then the award has been downgraded as her needs have lessened. her whole body is affected, rather than one side, but she does have one side stronger than the other (hence the bowls )

she was statemented for 15 hours support when starting yr r, but another girl had the same award and so school employed f/t support at 2-1 ratio, which worked really well. that said, she no longer needs to use her walker at school (in fact we gave it back to physio a year ago when she was nearly 6) and in the last year only uses her wheels occasionally (we have a wc (supplied by wcs) a maclaren major (self purchase e-bay as wcs would only provide on or the other) and a three wheeler that can go anywhere (again self-purchase)) she's only statemented for her physical issues - she has no lds. she's got a trailrider low bike (again self-purchase) but it's fab as she can get on and off mostly herself - she had a fully-loaded kitten with trunk support etc before, so again a huge improvement.

so - support at school is supposed to be moving around the building etc but is now largely fine motor support and some slt (vocab/ structure great, but monotone and dysarthric, so unless she concentrates she can be quite hard to understand if you aren't familiar with her or context etc). her statement included choking training for lunch/ snack supervisors as her oromotor skills are still a bit scary... (today we had an interesting experiment with a fruit roll-up, which we won't be repeating but by and large she eats the same as everyone else). from juniors she'll use a laptop, but for the next year it'll be 50/50 whilst they try to maximise the fine motor she has - ot are running a lower case letters workshop over the summer holiday.

her award was downgraded when she stopped the night issues (this is a big area for dla assessment) but tbh i'd rather have a child that sleeps than the money!

other than that, she goes to ballet (fab for core strengthening, even though she can't take exams and needs something to hold if they are doing 'one legged' balance stuff - skipping isn't really an option!) swimming (small ratio class, but this year doesn't need 1-1), and she's learning to ski (we pay a fortune for specialist 1-1 instruction)

ultimately, she wants to do everything her brother and sister do, and we do our best to work out a way she can... it goes without saying that she wouldn't be able to if we didn't get the dla, as it pays for the stuff she needs 1-1 for, and for things like the bike/ cross country 3 wheeler etc.

self care - she still needs help with dressing, although we buy stuff with no zippers/ buttons as far as possible, as her fine motor isn't great. washing/ hair/ teeth etc are all repeated by an adult (this summer she's had three titanium caps put on her back teeth as it's quite difficult to reach them properly and they were in hideaous shape)

but mostly, she's like any other almost 7yo, just wobblier

that's really long -sorry! trying to precis a dla application into an mn thread! probably left loads out!

forgot to say - her dx was changed to athetoid cp when she was 4ish as her tone had changed completely, so there's not much spasticity left - it's mostly low tone but with fluctuations (hence athetoid) but with some intention tightening/ grading issues.

Hello Em,

I've read your posts but not everyone else's, so sorry if I'm repeating anything ...

My son has hemiplegia. He is 3 1/2.

We get DLA middle rate, but about to be renewed and it may well drop down.

I applied twice and was turned down. Then I wrote a very passionate (angry) letter to them saying why I thought it was ridiculous that we'd been turned down and how much more we had to do in an average day than 'regular' mothers and people. This got sent along with all the forms to the tribunal people.

On the day of the tribunal they called me and told me not to bother coming and that they'd give us middle rate.

My son sounds similar to your son, although he's younger of course, so its not easy to make a real comparison.

You have to ask your paediatrician and physio etc (+ any other professional who deals with your son) to write a report stating his difficulties.

Then you must write a diary of what you do daily to help him. (write every tiny miniscule thing).

It doesn't matter if your son is using a wheelchair (this would only affect mobility).

Sorry i'm really rambling. Have you visited the hemihelp site. You'll get loads of information there and they have someone on the phone that can advise you properly. Its an organisation specifically for hemiplegia.

www.hemihelp.org.uk

If you have any other questions please ask.

hi skewiff, how badly is your son affected? does he wear splints? do you get mobility for him ?
have had a brief look at hemihelp in the past, i may have another look, like i say im not sure if i want to reapply, although i have the forms etc...

just wondering if anyone knows much about section 24 of the dla form- "what the child does or would do if they had the help they need"
im really clueless...

we put in extra-curricular stuff there - stuff like beavers/ brownies/ swimming lessons/ dance lessons - stuff that 'normal' (bleugh) kids do without a second thought, but that children with disabilities might need extra support or equipment/ accessible environments to take part in. for older youth it could be youth clubs etc, or shopping trips without parental accompaniment (so with a peer supporter or carer) - basically what additional support would enable your child to take part in ordinary peer group activities?

i'm sure there's loads of stuff that could go in - it's a great opportunity to look at what ds does, and what more he could (and would, do with the right support)

Em, it's good manners to acknowledge the contribution of other posters, especially if they have clearly spent a lot of time writing their posts, rather than simply asking for more information. This is a forum, not an encyclopaedia

sorry, im a bit late in replying to everyone ! so sorry if anyone is offended i didnt reply sooner

lougle i feel my son has more care needs than other children his age particularly as he wets the bed, so have started making notes for filling out the forms fourth time around

nickoftime i dont think they would statement my son as they havent actually said he has a learning diffucuilty, personally i think he has but the school cant say
however he does get 2-3 hours per week support from salt as mentioned before,
its wonderful t see your dd participate in various activities, my ds hasnt got any interests atm, he realises he is "different" to other children therfore feels very self conscious when playing outside he wont ask to join in and play football if others in street are playing, i ask him why and he sais because noone ever passes him the ball because he falls over this is heartbraking for me so we try and make up for that with lots of days out/cinema etc, however this is going to have an impact on his social life at some point ....sam here regarding buttons and zippers but its impossible at times to get certain stuff without buttons etc , the same as his shoes for splints, they have to be wide enough to accomodate his splint, and the only ones we can ever find are lace ups ...
skewiff i took your advice and have negan to write down everysingle thing i do for my son there are lots i missed out that keep coming to me so a bug thanks to you
nickoftime thanks for your advice re section 24, but my ds doesnt have any interests so i rang the helpline and they told me to write about things he does at home such as playing on computer etc, so i think i have it sorted
lougle thanks again for getting back to me, i wasnt ignoring people and i always thank people for replying, just didnt have time to sit and reply yesterday

so now i have lots of notes jotted down for when i come to fill in my forms 4th time round, fingers crossed guys !

Just ignore me. I am being grumpy - I had another look at our DLA renewal and had forgotten just how hideous the forms are

wats wron with your child lougle if you dont mind me asking?

Well, em, one answer to that is 'nothing', because she is gorgeous, and I am so proud to be her mother.

But, in terms of Special Needs, she has an as-yet-unidentified genetic syndrome that has caused the brain surface to fold abnormally, and caused structural assymetry. It's known as 'cortical dysplasia', but she has widespread subtle CD rather than the more common 'focal cortical dysplasia'.

She has Global developmental delay, with behavioural problems, sleep issues, and epilepsy. She starts Special School in September.

sorry if i have upset you
im sure she is a little gem and such a credit to to you... i wouldnt part with my ds for anything, he has his moments but dont we all

be a little bit careful about using bedwetting as an important difference as he is only 7 - most gp's consider 7 a 'normal' age for night time enuresis and don't consider it worth investigating until this point

No, you didn't upset me

I wonder if you've read the cerebra DLA guide? It is really very good.

You need to spell out exactly what your DS needs, what would happen if he didn't get that help, and how that is different from other 'typical' 7 year olds.

E.G. The bedwetting. How often does he wet?; does he alert you?; does he clean himself afterwards, or do you have to assist him? What do you have to do? Does he wear a nappy? If not, why (DLA can and will say that if there is something simple that would negate a care need it should be done. They don't often accept 'he doesn't like them' as a reason)? How long does your care take? What would you expect a 'typical' 7 year old to do? ( e.g. Call parent, get out of bed, go to bathroom and wash self, perhaps help strip bed).

Do you see? It doesn't matter what dx a child has got, if it isn't written, the asessor can't give an award for it. Even Riven, whose DD has very severe CP (no voluntary movement, although no LDs) has to fill in a form that SAYS 'needs total assistance at all times'. She can't just say 'CP', she still has to spell it out.

he is being seen by a school nurse for the bedwetting, he is what they call a multiple bedwetter, he is wet 2-3 times per night, he was given desmomelt tablets a while ago, but they didnt work , he doesnt wear a nappy or pull up because the nurse said he would just keep wetting it if we put one on him as he would get used to it, toileting needs are fine throughout the day...
as for personal care through the night, we do it all, he doesnt wake when he has wet, when we get up in middle of night to do whatever (check on dds of use the bathroom) we check him, and 9 times out of 10 he is wet... he sleeps through it, so we are having to get him up washed and changed and also change bedding, it can be very tiring especially as we have 2 dds aged 2 and 3 who arent the best sleepers.
re the learning diffucuilty he is beihind everyone else, scoring below everyone in the recent sats, however noone can say if he has a learning diffucuilty or not..{he is on school action plus and has an IEP,} it is rather frustrating not knowing if hi has a ld as well!
when i rang the helpline yesterday, i was asked if he had a learning diffucuilty and i said i think he has but no one has actually said he has the lady told me your his mother you live with him, if you think he has then write it down on the form
he sees a speech and language therapist as is understanding of words is very immature andhe is on a low level for reading- i think this all boils down to his poor concentration which again no-one ever takes seriously...
re cubs,camping etc, again its lack of concentration he wouldnt listen or pay attention to what was going on around him...

em - we have to change nt ds sheets and duvet without fail - swamped through a pull-up. he's been seen by two consultants and been through the run of meds - oxybutinin, desmo, various laxative types in case it is irritated by encopresis etc. but he's nt. so his consultants see this behaviour as 'normal'... (he also doesn't wake and so is soaked every night... we spent saturday using the upholstery cleaner on the mattress as the whole top floor of the house smells of ammonia - that's through waterproof sheets lol. we've spent a blinking fortune on malem enuresis alarms etc. anyway - not trying to put you off - but you do need to specify how much time in minutes you are doing all this stuff for - and in what way it is different to a 'normal' 7yo.)

re- cubs and camping etc - you have actually made my point for me lol 'he wouldn't listen or pay attention to what was going on around him' - um, yes, that's why in order to attend and make the most of the experience he would need 1-1 support to keep him on task. that's why they mean by 'what would he do if he had the right support'. imagine what fantastic experiences he could benefit from if he had someone guiding him through them and ensuring he was safe and on task?

(apols if i sound a bit lecturey - it's just a matter of looking at things from a distance. sometimes we are a bit too close to the situation and need to step back a bit to see other possibilities.) not trying to force him to go to cubs btw - lots of families have a real gut-wrenching distaste for the whole uniformed youth concept - each to their own, but the same could be said of any sports/ activity. what about a drama group? stsgecoach? something that (with the right support blah blah) he could use to gain confidence and expand his horizons - learn to deal with a different aspect of the world. at this sort of age it would be 'normal' to be experiencing some sort of activity away from the family unit - so this is the sort of thing that the dla should be covering - something that enables the child to experience the same stuff as his peers, but with the right support.

(all that totally 'right-on', most dla gets spent on groceries and heating, but it's about proving a need.)