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Here are some suggested organisations that offer expert advice on SN.

just had a "Row" with DLA

(21 Posts)
jenk1 Tue 26-Jun-07 09:02:56

they have awarded DS middle rate care and low rate mobility-reason?
yes they accept that ds is incontinent in the night BUT he can wear, nappies or special pants which would mean me not having to get up
he can have the use of a commode in his bedroom if need be. he,s 10 FGS, i put on my application that its not fair to expect a 10 year old to sit on a potty/toilet, that his friends would know and it would have an impact on the limited social skills/friends that he already has.
i also told them that he cannot go to the shops round the corner or to the after school club across the road without someone taking him, that he doesnt go ANYWHERE without transport.
she said he cannot have high rate dla cos he isnt in a wheelchair or doesnt have a disability i told her she was wrong, that they were discriminating against him (i was very annoyed!!) and that he has a severe behavioural/mental difficulties, she said he can only get high rate mobility if he gets high rate care and he doesnt qualify.
i have got 4 weeks to send in extra info.
im looking for links, ive found davros link that quotes social security on it and i quoted it to the woman-she put me on hold!!!
has anyone had this and if so what did you do?

gess Tue 26-Jun-07 09:05:36

I wrote about DLA and mobility yesterday. My piece probably isn't that useful, but the NAS link on there is really really good. Have a good read of that.

Tiggiwinkle Tue 26-Jun-07 09:14:02

Yes the NAS site quotes the reason why autisitc children can qualify for highter rare moblity iirc.
Put in for a reconsideration and then appeal if they do not change their minds jenk. But do get some help if you have to go to appeal-they are much more successful if you have representation apparently. (Use CAB or another welfare benefits agency service).

jenk1 Tue 26-Jun-07 09:34:32

thanks for the link, thing is i did put most of that in my form,so i dont understand why they have turned him down for high rate?
i will mention the megarry case though, see if that has any bearing on it.
its soo annoying, to have to fight for things like this, the woman said they expect DS to be like the way he is for a long time and have reflected that by setting the award for 5 years but they,ve toally ignored how he is.

coppertop Tue 26-Jun-07 09:55:13

FFS! Wearing nappies at night doesn't mean you don't have to get up in the night. Ordinary nappies are generally designed for pre-schoolers and can't absorb the amount of urine that an older child produces. Ds1's nappies regularly leak and so we end up having to get up in the night with him to change his nappy, pyjamas and bedding. Ds1 has just been awarded higher rate care.

The woman is talking out of her arse.

Boredveryverybored Tue 26-Jun-07 10:00:46

I don't have any help for you I'm afraid but wanted to post and say how ridiculous that is
You would think being the people that deal with disabilities and endless information about them that they would have a sight clue wouldn't you!
My dd is incontinent too, shes 6 and they've never questioned the fact that I've always stated that I need to get up with her through the night for changing, even when she was much smaller, but then she's in a wheelchair, which obviously makes everything completely different

Idiots.

Hope you can get it sorted.

Leilel Sat 30-Jun-07 15:55:56

Hi, this is my first message. I dont understand all the abreviations that you use in your posts.

I have 2 disabled kids. It feels like living on a knife edge.

I work part time at the citizens advice bureau, specialising in helping people with DLA (child) claims. But when i look through the posts in this thread i think that some of you have had some really rubbish service from Dept Work & Pensions(disability & carers).

Is this posted right?

winestein Sat 30-Jun-07 15:59:23

It's posted right Leilel, but the original posters might not see it as it's a thread that is more than 3 days old (it drops off your "threads I'm on" after that).

Have a look in the acronym list for all the abbreviations.

And welcome!

Leilel Sat 30-Jun-07 16:31:04

Hi, thanks, Im not the type to make any sort of an announcement post "hey look at me" lol. I went straight to the special needs section, because i have a lot of interest in it, (cos of my twins) and cos of my job. and because it makes me annoyed when i see people have had shoddy responses from the disability and carers service. (i think they just want to discourage people from claiming DLA for their kids)

winestein Sat 30-Jun-07 16:44:04

The DWP does seem to put an awful lot of obstacles in the way, that's for sure. I recall it was a nightmare when I helped my mum claim attendance allowance on behalf of my dad.
If you keep looking at the special needs boards you will see this kind of thing coming up a lot from what I understand and I'm sure your insight will be more than welcome!

ladygrinningsoul Sat 30-Jun-07 17:26:08

Hi Leilel, nice to meet you. How old are your twins? I have a 3.7 yr old boy who has just had a provisional dx of HFA (high functioning autism).

Leilel Sat 30-Jun-07 18:58:21

hi, thanks for the greetings my twins are 6 and a half. identical twins with ADHD and severe learning disabilities & a 'twin language' (for want of a better term).

I love their individuality, im really proud of them you know ^some people cant see why, but then people who cant see it can carry on in their zombie like state as far as im concerned!^ My boys have an energy and a positivity that is invogorating and lovely. my house is a wreck of course, and i exist on vast amounts of caffeine.

Leilel Sat 30-Jun-07 19:16:49

I looked again at the original poster of this thread. Jenk1.

I have 2 examples which might be of help????I can recall a similar situation arising with one of the CAB clients (where they originally turned down on higher rate care). As you all know the DLA forms have vast boxes for descriptions. When we filled in her form (for review) we stressed over and over again that her daughter needed 'frequent and sustained attention' throughout the night, this included the mother(carer) having to clean up urine spills, soothing and coaxing the daughter back into a state of mind where she was able to go back to bed, cleaning up the bed/clothes. helping her daughter when she wandered and frequent checking to see she was ok, (cos she got distressed).

We worded the review form to emphasise the amount of work the carer had to do throughout the night. The daughter got her award.

Another example of this is a friend of mine whos daughter is plagued by psoriasis, so she scratches all night long, she needs frequent care throughout the night, but until it was emphasised on the DLA review the DWP had only awarded middle rate care - did they think that the discomfort went away at night??

They dont see it from the carers point of view, you need to bring them into your shoes. The more descriptive the better IMO.

jenk1 Sat 30-Jun-07 20:12:26

thanks leilel, ive got to write this week to them and send further evidence.
i dont really have any but i think that maybe i could have worded it in another way.
its the mobility thats the problem cos we cant take him anywhere without transport cos he is a danger to himself.
the dla woman told me that you cannot have middle rate care and high rate mobility, but i said i knew people who had it and she said no thats incorrect but i do know of others who get high rate mobility and middle care-my dad for one, she said its because ds isnt classed as having a physical disabilty-that he needs to be in a wheelchair or be virtually unable to walk-sometimes he is due to his behaviour problems.
i put all of this on the form though.

Nat1H Sat 30-Jun-07 20:52:31

There is a fantastic form on Cerebra's website which takes you through the DLA form for brain injured children specifically. It tells you what they are looking for and even what wording to use in some instances. We managed to get High rate care and high rate mobility after using this form for help.
Good luck!

saggarmakersbottomknocker Sat 30-Jun-07 21:03:07

jenk - this is from the Benefits Now website and I think is what the DLA woman refers to.



In order to qualify for the higher rate of the mobility component (currently 45.00 per week), you need to show that

-You cannot walk or

-You are virtually unable to walk or

-The exertion required to walk would "constitute a danger to your life or would be likely to lead to a serious deterioration in your health" or

-You are both deaf and blind or

This bit
-You are entitled to the higher rate care component and are severely mentally impaired with extremely disruptive behavioural problems or

-You are switching from the pre-1976 invalid vehicle scheme

-In order to qualify for the lower rate of the mobility component (currently £17.10 per week) you need to show that you require guidance from someone else when walking in places that are unfamiliar to you



My interpretation of that is that if you can prove you need high rate care you may then get high rate mobility.

saggarmakersbottomknocker Sat 30-Jun-07 21:04:00

Link to the page

jenk1 Sat 30-Jun-07 21:17:35

thanks thats really useful

saggarmakersbottomknocker Sat 30-Jun-07 21:20:49

I'm tuned into it at the moment jenk as I'm reapplying for dd's. My internet 'favourites' is packed with DLA advice links lol.

mymatemax Sun 01-Jul-07 09:13:09

Hi Jenk, i get High rate mobility Mid rate care for ds2, so they do award it
I do think they will try & drop the high mobility to low when he turns 5 i'm sure we only got the high rate because there is not the option for low mobility for under 5's & it was all or nothing iykwim.
I was told the only criteria for mobility was the degree of help & supervision needed to walk safely outside & the high rate care would only be awarded if help/supervision was needed frequently though the night. I wasn't aware that the 2 were linked

Leilel Sun 01-Jul-07 13:12:01

Jenk1, are there any organisations like'contact a family' (a fantastic organisation, loads of experience) in your area, or an independent disability advisory service. Or a CAB which specialises (like where i work). cos if you can sit down with someone for a few hours and get through the forms together its so helpful, you just see a different perspective. Sometimes what it takes is for someone with a fresh perspective to ask you things that hadnt occured to you because when youre the parent/carer you're just so in the thick of it.

When i help ppl in CAB to fill in child DLA forms we have 3 main books we use for reference: CPAG (child poverty action group) the guide to welfare benefits and also the specialist disability book they also publish. Then theres the disability alliance handbook. both of them are fantastic. I recommend them. All CABs use them. I used them when i filled in DLA forms for my sons.

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