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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Sitting here staring at DLA form

38 replies

meea · 16/10/2004 15:56

Have so far filled in his name and address.
I am now stuck as ds2 doesn't have a dx how do I name his condition.Think I need a drink already.

OP posts:

gothicmama · 16/10/2004 15:59

go to the next question , make a note of the ones you miss out and why and go back to them later . remember to use realistic timings and base information on the worst day .include as much info as possible

fairydust · 16/10/2004 16:05

meea - i'm with you on this one - ours is up for renawal in march and they've sent the forms through already

best of luck - have you got a HV who can help you at all.

gothicmama · 16/10/2004 16:12

if you are really struggling make an appointmentt o see Citizen advice bureau

misdee · 16/10/2004 17:28

just work through as much as you can, then go back and do the rest. i always make sure i leave space for anything ive forgotton (like changing sheets when dd2 vomits, or dd1 gets itchy and bleeds).

mention that you ds needs supervision 24hrs a day as he is unco-ordinated (that is right isnt it?), that he cant be left alone in case he injures himself. (in my dd case she doesnt seem to notice cuts etc so have to be vigilant or else she gets infected).

And go have a drink.

coppertop · 16/10/2004 18:49

I think I started off by writing down what happens on a typical bad day, using 15minute intervals, eg:

0800 Put clothes on ds1. Unable to dress himself so I have to put his head through his jumper and hold up the sleeves for him to thread his arms through. I hold the trousers ready for him to step into and then help him to pull them up.

0815 Tell ds1 that we will be leaving the house via the back door in 10 minutes. Give countdowns at 5mins, 2mins, and 1minute.

This gives you a lot of ideas for things to put in the different categories. You can also add the whole lot as extra evidence to be sent off with the completed form.

chonky · 16/10/2004 19:10

meea - you've got further than me so far

Do you have a local family co-ordinator (think that's their title)? I only heard that we have one locally from our physio, but apparently she's very good at helping with filling in DLA forms.

Enjoy the drink!

ScummyMummy · 16/10/2004 19:13

Where do you live meea?

jakbrown · 16/10/2004 19:23

I just wanted to be positive all the time when I filled in mine but you've got to think how much more support your ds2 needs compared to a NT child of the same age. And like coppertop says you have to go into a lot of detail. My dd didn't have a dx when I filled mine in- but she had the label 'global developmental delay'. Has your ds2 got any other investigations? Mention everything.

Original poster

meea · 16/10/2004 19:35

So many things going on at the moment I can't think straight.
I still havn't got any further asked dh for his imput and he said don't really know.
Scummymummy I'm in Sheffield.

OP posts:

winnie1 · 16/10/2004 19:48

meea, can I ech gothicmama, ring your local CAB office and make an appointment with their benefits exper. S/he will have lots of experience of filling the form in and will think of things that you may think are insignificant or irrelevant. They will help you present your case in the best way for you to get the best possible outcome for you. Either way good luck those forms are daunting x

jmb1964 · 17/10/2004 00:01

someone on here recommended a superb website which I used (successfully) when I applied for our ds1 with Aspergers - definitely worth a look

misdee · 17/10/2004 09:58

meea, how did it go? I know you probably dont need to hear this, but getting DLA sortedwill make getting the major buggy a lot easier. especially if they decide he needs mobility too (is he close to his 3rd birthday?).

Hope you got most of the form done last night and had a drink or 2 afterwards. when i did dd1 form the 1st time, i felt so over whelmed and didnt know what to put. i ended up phoning mieow who has filled in the forms with lots of questions. with dd2 i just sat down and did them in one afternoon. got the hv out the same day to go thro them and sign them, sent them off, 5 weeks later we had HRC DLA for dd2 as well. and it does help. especially with my laundry/clothing cost (dd2 reacted badly to knickers last week, so am having to buy new ones at £18 for 3pairs eeekk!!).

Let us know.

ScummyMummy · 17/10/2004 10:01

Was wondering whether you were anywhere near London, meea as I might have been able to help. But I guess Sheffield is not so near! So I think I will now echo gm and winnie1- get ye down the CAB, asap.

dottee · 17/10/2004 10:37

Meea - CAT me and we may be able to get together.

My dd's got CP with complex learning difficulties and we have higher rate mobility and middle rate care. You can look at her form. If you want I'll send you a copy.

My techniques include naming your son at every occasion, and not being frightened of repeating your self. When they ask for how long it takes, play on the maximum. E.g. how long does ds need help with toileting = put (assuming his day is 8am until 8pm) 360 minutes (that is, 12 x 60 minutes).

Does he need any appliances and/or medication? Assume the day you describe is without these things.

Please CAT me if you wish. Dot xxx

dottee · 17/10/2004 10:46

p.s. I live in Brampton near Wath.

Bunglie · 17/10/2004 12:36

I agree with dottee..don't be afraid of repeating yourself...put down as much as you can but they work out the rates on 'time spent careing' I know that sounds silly, but you will not get middle rate or higher rate care unless you say that care is needed at night. They add up the boxes where you fill n the time, and then work it out on a 'table' they have....but make sure you put the name of every person involved in ds's care and any special adaptions you have, even a special set of eating utensils for example can really make a difference... I know the form seems daunting...but take it slowly and don't forget to take a 'copy' of it before you send it off. Good luck.

tallulah · 17/10/2004 14:12

Another vote for the website jmb recommended. I followed their recommendations & it made the form easier to cope with (but still took me months to fill in!!)

Just remember that you are describing your very worst day possible, with all the problems you have happening at once. It feels horrible doing it, but it's the only way you'll get your money.

Original poster

meea · 17/10/2004 15:12

Thanks for all your help don't know if I should admit that I still havn't got any further.Feel rubbish today am going to bed with a hot water bottle and the form.

OP posts:

Original poster

meea · 17/10/2004 15:14

Every time I look at it I just keep thinking that he is only 2 and how to tell the difference between him and an average 2 year old.

OP posts:

jakbrown · 17/10/2004 16:39

Yes, it gets easier to compare and contrast as they get older. I found that really difficult as I kept thinking, 'but all 2-year-olds need supervision' etc but I had to look really hard at how much more my dd needed than a 'typical' child. And, like Bunglie says, you must mention nightime problems. On that note, my dd was up for FOUR HOURS last night from 2 until 6 stimming madly and spinning around the room with a glint in her eye. Add to that my ds's middle-of-the-night fever and we are a family on the edge today!
Good luck, meea, will root out my forms tonight and put more useful 'phrases' for you to think about tomorrow.

Thomcat · 17/10/2004 19:00

They are awful forms to fill in Meea. Your portage home visitor will help you fill it in our a HV. If it help Dottee and I sent our forms to Chocol8 to help her fill them in, I'd gladly do the same for you if you think it might help. Obviously they ill be very different but it might help to see the sort of thing other people have put? Let me know and we can email each other and I'll get the forms to you.

Original poster

meea · 19/10/2004 12:42

Just wanted to say thankyou to everyone .I will cat everyone who offered there help.Ds2 and I have been poorly and I have managed to get dressed today.He just layed on the sofa yesterday under the duvet made me see how non stop he normally is.I also noticed that he talks and makes noises all the time.
The website is great sure it will be loads of use.

OP posts:

Easy · 19/10/2004 12:45

our council has a benefit rights advisor, and he came and filled in my form with me. So it might be worth investigating if your local council (district in our case) has one.

Otherwise do you have a social worker? Might be worth asking there too.

Original poster

meea · 19/10/2004 18:11

Dottee I am in High Green not far away .It's about 10 minutes from Cortonwood.
Thomcat It would be great If I could have a look at your forms as your child is a simular age to ds2 who is 2.6.

OP posts:

Dingle · 19/10/2004 18:49

meea, I'm sorry but I don't know what sort of problems you face with your ds but I'm up for helping in any way I can.
I have a dd with DS who is approaching 3. Although I completed her DLA forms when she was only 3 months old I can help with the type of info I included at the time and perhaps the sort of things that affect her now. I need to get my head around it anyway because I am just about to claim for the mobility aspect of the DLA fro my dd.
Let me know or CAT me if you need to.

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