DLA REFUSED!

[deeeja]

Well, I filled in the sodding form, andit gave me pain in my hands, and took me four days to complete.
I included reports from salt, paed, ot.
They turned me down.
So what do I do now?
Please someone tell me what to do!
I find all this so difficult to organise, I am so exhausted all the time! Ds stays up half the night shouting at the top of his voice. I can't think straight at the moment.
I gave lots of information on the dla form, and filledin extra sheets.
What is the next step for me?
TIA!

I think the next step is when you write to them and ask for the decision to be reconsidered. I think there's a time limit though so you need to do it asap.

Lots of sympathy. I posted ds2's renewal last week and it was a bloody nightmare.

There's some more info on it here. It's the RNIB site but the info should still be relevant wrt appeals etc.

Have you got a GP or an OT or someone else who knows your status IRL?

You need to get representation.

I have been drowning in a benefits appeal for 3 months now and suddenly I've found someone who knows what they are doing and has taken it over for me. (She even suggested I claim DLA and will fill it in for me, I had no idea I might be entitled - I just get IS at the moment)

She is a sort of benefits liaison person whom my OT got in touch with on my behalf. she is fantastic.

I don't know exactly who you need to ask for but definitely get Dr's letters which back up your claim and mentions specific points.

This is so wrong, they are cracking down on people who really need help.

i took dd to welfair wrights lady they fill in for nothing and help if been refused

Sorry I see you do have OT etc. You could ask them for the benefits person, there should be someone they liaise with who reps people on a regular basis for tribunals etc.

What a nightmare. I think CT is right and you need to ask for them to reconsider the decision.

But with all due respect, though it is the next step, they won't reconsider unless further evidence is put.

Mine was not allowed, I asked thm to reconsider, sent Dr's letter and HV letter (about PND in my case) they still said no because, and I quote, 'These letters describe symptoms. Our test is about Function. The appellant obviously has good mental function as she is able to write a cogent argument and type it on the computer'.

So basically they were using the fact I had tried to defend myself against me.

I am not sure what the details are of your case Dee but I think you would get a lot out of someone who knows the ropes taking you under their wing.

Citizens advice are meant to be great, if you can get hold of them.

I am afraid I have to add that these people are real bastards, doing this to you. Why don't they come down on the people that are making it up, not the ones who are actually deserving?

Sorry about that. Makes me so angry.

My 1st request for ds2 was turned down & I phoned & asked for reasons & told them I was going to write & ask for reconsideration.
I wrote included more reports & also a diary covering a few days highlighting examples when ds2 needed more care or help than a child of a similar age.
They reconsidered & awarded high mobility middle care.
Although its being reviewed again at the moment bloody DLA!

Oh sorry - i thought deeja was claiming for a child.

I think she is, Dusty. Not sure.

I got help filling out Ds. It really helps if you download the guide that tells you the specific words to use I will link if you need it. Words like "frequently" is considered more than "sometimes" and emphasis onthe differences between your child and others their age. FOr me it was lack of any vocabulary and any real understanding and all the time spent with doing PECs and special diet and extra time needed for dressing etc due to lack of understanding, etc

We have a disability organisation in my area that help with the appeals process. Do you know what help is available in your area? There will be CAB or Welfare rights or disability worker or something in most areas. Also sometimes the professionals involved in your child's care can sometimes help you fill if they have had previous experience in filling them.

You have every right to appeal the decision,you have 30 days to do this, you should also post on this site for better information
www.youreable.com/forums/category.jspa?categoryID=6

a lot of claims are turned down and up to 70% win their appeal.

No point asking for the decision to be reconsidered as they do this anyway as part of the appeal, The hardest part is over (filling in the form) Phone up and tell them you want to appeal and for them to send out form GL24 (takes 5 minutes to complete) this is the form they like to use for an appeal, you can download one from the net if you prefer. If they don't change the decision when they reconsider it will go to appeal (3 persons tribunal) This is far better as at least you get to talk to someone instead of trying to convince a faceless beaurocrat.

anyone wanting to appeal...try getting help from 'families in focus'. they have brill advisors and helped my appeal for dla. i thought we should get low rate carers, but got awarded high care rate for my dd.

If he's up all night screeching, you definitely qualify as that's one of the basic criteria- possibly even for higher rate. Indeed, DS3 got turned down for DLA and was awarded high rate care after a reconsideration- I think they often just want to test to see if you go that far.

CAB can often help with the form, and CEREBRA have a well thought of guide available. You should also be able to contact the cahrity representing whatever dx he ahs (eg NAS for asd kids) and they will be able to help.

In my experience they turn a percentage of people down as a matter of course.

My personal opinion is that that is a lack of understanding about children with special needs particularly behavioural needs and that if a child is young then the person viewing the form (who has no experience in this area) may confuse the difficulties your child experiences with what a child without developmental problems may have and view it as a parenting issue.

I think with children with special needs it is important to explain how your childs behaviour affects his function and how that differs from a child without developmental problems. You may done this anyway....

For example, My child requires hours of assistance at night. He may wake at intervals and be awake for * mins/hours at a time. Include a weeks waking night time sleep diary log. Due to his lack of speech both with expression and comphrehension i am unable to soothe him as one might be able to soothe a non disabled child of similar age. I am unable to leave him in his room alone as he would be at risk of injury in the following ways (list ways). I have tried the following strategies to encourage night time sleep however they do not work because he a) can't understand or b) part of his disability involves repeditive behaviours or whatever is appropriate to you. You are the expert after all!

Good Luck with your appeal!

Hi, thanks all for the advice!
I have lodged an appeal, and am waiting to hear from them. I followed the advice on cerebra. I suppose I was one of the many unfortunate ones.
At the moment I am trying to get ds's statement sorted out, which took my mind of the dla for a while. I had forgotten I had started this thread.
DLA seems like the least of my problems now, the money might come in useful for ABA though.
I really have to get more organised about all of this.
I don't know how some of you cope, you have far more complex problems than mine.
Thanks for all the replies.
xx

my appeal was based on a document i wrote 'a day in the life of my daughter'. I was advised to go step by step through an average day, and basically say everything you do . Took me flippin ages to do so don't wait til you get an appeal date! i agree with poohbah above state what you do and why it is different with a child without their particular problems. for example; in my case i had to give medicine three times a day. on the original form i put this simply, just like that presumimg the people making the decisions have a brain and common sense as well as some knowledge!. On the appeal paperwork (i added to my application) it was explaning how;; "the medicine comes in capsule form, she is not able to swallow a capsule as this will cause her to choke. The contents of the capsule are not soluble unless in very hot water; therefore i have to take apart a syringe; open the capsule, carefully tap the contents of the capsule, into the syringe, put the plunger back in very slowly so as not to shoot the powder out. I then have to use recently boiled kettle water poured into a cup;draw up aprox 3 mls of this hot water and shake the syringe carefully so i do not loose some of the drug,until drug is dissolved. I then have to wait for this to cool to avoid burning my childs mouth and lastly i have to control my child whilst slowly giving her the contents of the cooled syringe. she fights this and is extremely difficult, and often results in my arms, hands and face being scratched and bitten by my child. This i need to do three times a day."
i hope you get the gist!!
think of these DLA deciders as ignorant aliens who have just arrived on earth and know nothing!!

good luck!
Mine was about 11 pages long, they didn't seem to mind! but additional paperwork such as this has to be lodged with them quite a bit before the appeal.

I dont know if this has already been mentioned but my specialist HV told me recently that it may be better for me to wait till april to put the forms in for ds2 (ds and talipes. She said that now it is close to the end of the finacial year the purse strings are tighter. When april comes they get the influx of new money and we are more likely to be awarded.

Not sure if theres anything to it as I think that there is no rhyme or reason to DLA whatsoever but it's worth a go and I'm not putting them in till then.

HTH

I was told that the DLA was given as DS can't be left alone without potential risk to himself or others; and that nights are frequently more wakeful than the day - so if he is awake, I have to be awake whether he wants me or not. As sox and poohbah say, it's best to give all the details so they know your life isn't approaching normal. Advice I was given was to offer the worst case scenario, then you get the support you need to begin to cope.

Hi catok
The sooner you apply the quicker you'll get a decision, it takes a few months anyway, so they probably won't decide until april if you send them off now! also, if awarded they backdate til the date of form request providing they have it back from you within 28 days. If you delay that is a few months money you are saying goodbye to.
When i applied , they refused, they took a second look (which is done by different assessor) and refused. Appeal went ahead and i was awarded without even going in to the room! all in all it took 11 and a half months. and i finally got money a year after application. I'd send it off, but put in " a day in the life of" which could take you a long time to write!!
good luck

Hi catok
The sooner you apply the quicker you'll get a decision, it takes a few months anyway, so they probably won't decide until april if you send them off now! also, if awarded they backdate til the date of form request providing they have it back from you within 28 days. If you delay that is a few months money you are saying goodbye to.
When i applied , they refused, they took a second look (which is done by different assessor) and refused. Appeal went ahead and i was awarded without even going in to the room! all in all it took 11 and a half months. and i finally got money a year after application. I'd send it off, but put in " a day in the life of" which could take you a long time to write!!
good luck

Sorry! my connection failed so i sent again!!! WHOOPS!

And to look on the bright side... when we did get awarded DS3's DLA (school had denied he was incontinent ), the backdated amount was certainly a pleasure tor eceive and meant we could do his bedroom / but the car adaptations that we needed.

the second of the expected DLA forms turned up this morning.... I have two to do. Drat! Fortunately the NAS lady is coming out on thursday to help with ds1's (DS3's pretty self explanatory- very little language, incontinent, etc etc- but DS1's always ahrder as school refuse to fill in any forms for this sort of thing, although I have his home-school link book which proves the severe aggression now.