To apply for dla for my child?

[Rainer]

He has to regularly self catheterise, all be it independently but requirs reminding, especially with a lack of routine (as in now during the holidays) needs help to measure and record drinks and wee passed. We have to attend weekly soon to be monthly appointments. His equipment needs to be ordered regularly as well as medication.

Wwyd?

[seasidesally]

unweavedrainbow very helpful many thanks

[Fourarmsv2]

I found a guide online for decision makers that actually had my DSs condition listed. That helped when I asked for reconsideration. Let me have a look...

www.gov.uk/government/uploads/system/uploads/attachment_data/file/538926/a-z-child-medical-conditions.pdf

If you request a paper form they will backdate your claim to the date of request if you are successful. I did mine electronically so I had the option to copy and paste in lots of relevant medical info.

[coffeemaker5]

give it a go but in order to qualify you need to show that you have to provide care for your child that is which goes significantly over and above the care you would provide for a typical child. I don't think hospital appointments count and going once a month isn't that much in any case.

from the little bits you write on here I would not hold my breath. maybe low rate care at a push.

I have a child with severe ASD, severe learning difficulties and very limited speech and language and chromosome disorder . took us a reconsideration and an appeal to get DLA and took 8 months in total.

[Rainer]

Well according to that list four arms for the night time bedwetting element we would be eligible. Although this is managed with the catheterising. But I guess it comes down to how much prompting an eleven year old should need.

He's had speech and language input and came out with the bottom percentile for following instructions which she put down to an anomaly and pretty much discounted. Because he's has done 'ok' at school she felt he didn't need any diagnosis. Waiting to see paediatrician again following this.

A typical day he will get up and do his catheterising. But other days he won't and needs to be prompted to do so. He is supposed to keep a record of what he drinks. He's only managed to do this loosely on maybe three out of four days out of a month so far. So really I need to be doing it. During the school term the routine of lunch helps to prompt him to use the bathroom. At least I hope it does. I have no real way of knowing.

He always requires prompting to bring his equipment with him. In the holidays if I don't remind him wrt his toileting it simply doesn't get done. He is supposed to measure output but rushes it and I question his accuracy hence asking him to leave the jugs for me to measure which he didn't do last night immediately after being asked to do so.

I've been reminding him at least twice daily to write down wee amounts and last night it turns out he hasn't at all. Four wees a day for four days not one written down.

He's also supposed to be recording wee amounts when he isn't catheterising and he's never once done this.

There are also elements of his diet that he needs to be encouraged to avoid.

Most eleven year old boys don't need to be encouraged to use the toilet. Or reminded.

Confession time. I started this thread as it was likely to have higher numbers of people seeing it as I posted in sn looking for other dc who have to self catheterise. Feeling a bit alone with it all.

[coffeemaker5]

if night time bed wetting is managed with categorising and you don't have to get actually up every several times at night for prolonged periods (this is the 'test' for night time care) it won't count.

also, encouraging an 11 year old to go to the toilet us not the norm but does this count as care needs over and above a typical child?

get the Dla guide and give it a go

[Rainer]

Monitoring fluid intake and output though? I don't know. I probably won't bother.

He does still wet the bed, just not as frequently. It used to be every night.

[Rainer]

Fwiw his bladder condition is linked with adhd which would explain his difficulty in following instructions.

[coffeemaker5]

if he has ADHD then this may increase his care needs too.

you really need the cerebra guide and have a go at the form. get report from doctors together. can you get anything from school in writing? if he needs help at home I assume he would need this help from school as well.

[NothingIsOK]

You have little to lose, other than the time to complete the application process, and a lot of potential gain, so it's worth applying. I expect you know by now it's PIP not DLA these days. Good luck. I didn't think I would qualify but ended up with getting some, so don't assume.

[Aeroflotgirl]

I would apply, the fact your ds has to self Cathertise, effects his day to day life.you can only try. Our SW encouraged and helped us fill the formto apply 6 months ago for ds 4, as he is dev delayed, and speech delayed and had associated difficulties. I wasent expecting it, but we got a low rate.

[diaimchlo]

What Unweave has advised //www.fightback4justice.co.uk/ are extremely good please contact them.

[Aeroflotgirl]

Oh and he has ADHD as well, yes most definitely!

[Aeroflotgirl]

I even did not put all of ds difficulties as I thought they were temporary, just a few of the main ones. I threw in Paeditrician and SALT and specialist teacher reports and hoped for the best.

[Dinah85]

Apply, most first applications seem to be refused at the moment (our daughter's was refused within 6 hours of being received on the grounds that she 'does not show evidence of significant mental impairment' - well no, she has a lung condition!) - go for mandatory reconsideration. You can put a letter in for that saying why you think it should be approved - this gives you a chance to do a short bullet point list of the important points, rather than them trudging through a 40 page document where 90% of the answers may well be normal, but the 10% that aren't can have a massive impact on life and they miss it. Of course you might be approved straight away but it seems very rare. There is a good facebook parent led group for children's DLA applications to help guide you through the process. Just to be aware it was found to be unlawful in a court case last year to do the application on a worst case scenario (it is considered to be fraud and there have now been people prosecuted as a result) - you have to use an average day for assessment purposes - but you can put a description of a worst day in the comments or extra info section.

[Rainer]

Polter no, no diagnosis. He is currently under assessment but the salt felt no diagnosis was necessary as he is average at school. He has a poor memory she believes, he scored very low on several of the tests but high for vocabulary which to my mind would also back up a adhd type picture? Every other test was between 1 and 16 percentile. He does have recognised areas of difficulty though and has been assigned a learning support lead for his new school. It is the only diagnosis for his bladder dysfunction that has not been ruled out.

[Merrymumoftwo]

Just to add when applying keep a diary for a week and make notes of prompting and tasks. Sometimes you don't realise how much you do. Also of note they now specifically state on form that you have to give average day not worst and I am on a group where people have had their claim stopped for doing worst and had to fight to get reinstated due to being badly advised at a CAB to use worst day only. Good luck!

[PickAChew]

All that stuff, with anything on paper, including information about the help he needs at school is what needs including. On the form, also add in the things you need to do daily in other ways, due to his ADHD, such as making sure he has everything he needs for school in the morning, is dressed correctly, etc

[Fourarmsv2]

Have you tried FB for support groups for children with similar issues? Or ERIC?

My son has some continence issues but doesn't sound as bad as yours.

[manicinsomniac]

Don't you have to prove that more money has to be spent on meeting his needs than would ne spent on a child without the needs?

I'd say apply if you have the time for the lengthy forms but that it might be a waste of your time if it's limited.

[Groovee]

Search Fightback on Facebook. They have a lot of notes and guidance and can help fill in the forms.

[sodorisland]

Defiantly apply.

My ds is 5 with autism and gets the high rate care component and mobility.

Note everything down, if he needs help or prompting to change or wash, cut up food, put shoes on etc.

With his adhd anything he struggles with or you struggle to get him to do even the smallest things and any supervision he needs.

As you've never done the forms before I would get someone into help you word it right and they look for certain things.

You don't need to tell them anything to do with the cost only what care he needs.

[JinRamen]

That link is interesting. My ds has ADHD and ASD and I have never applied as I assumed we would get turned down, even though he can't do things like tie his shoes, has to be reminded to wash the Soap out of his hair, flush the toilet etc.

But looking at that list, my other ds might get it for bed wetting, nine and wets every night, medication and alarms haven't helped! :/ AND third child has allergies!