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SN children

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

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Original poster

Heaven help me these days but DLA turned down again.

46 replies

SparkleRainbow · 10/03/2011 12:26

Well that is it really. I put in a 15 page letter referenced to quotes, reports, etc for reconsideration and supplied 35 pages of additional evidence, but I got the letter this morning turning ds down, no reasons given.I know the knowledgeable amongst you would tell me to go to tribunal, but I just can't, I just can't do this fight anymore, I can't any extra heart ache involved, I want my boy to be "normal", to live a "normal life", I want him to live. No one, no one will help him.
Please any trollers or flamers don't even think of posting in answer to me, I just needed to share my desperation with my friends.

OP posts:

shazian · 10/03/2011 12:33

Really sorry for you, does make you angry when it takes so long filling in DLA form for this to happen. It is heartbreaking to fill out form because it points out what your ds cant do (in comparison to NT dc). I hope that when you calm down and get over shock of DLA being turned down you reconsider tribunal. Getting the DLA will help towards extra expense incurred with your ds. Your ds is a lucky boy who has a wonderful mum who wants the best for her lovely boy.

sugarcandyminx · 10/03/2011 12:33

Sorry to hear this . I can understand if you don't feel able to appeal right now, sometimes you just don't have the energy.

Perhaps put it to one side for now and see how you feel in a few weeks. I can't remember when you need to submit an appeal by, I think it might be a month, and you might feel more positive then.

You could ask for a reconsideration, which means it will be looked at by another decision-maker. You don't have to set out any more arguments or send more evidence, just put the request in. I know others on here have had DLA awarded on reconsideration so it's surely worth doing?

Original poster

SparkleRainbow · 10/03/2011 12:42

This was the reconsideration. The problem is ds's medical condtion is pretty rare, and the way it affects him is unprecidented in many ways, not even his consultants know what to do to help him, so......

It is just another faceless set of people saying they don't care, we have enough of those with the LA, and even some in the NHS. Yet every day he gets up in pain, every day when I take him to school I never know if I will ever see him alive again.

Sorry

OP posts:

bigcar · 10/03/2011 12:42

oh no sparkle that's crap. I can totally understand you not wanting to take it further

Original poster

SparkleRainbow · 10/03/2011 12:43

Thank you all for replying to me, I often feel alone as ds' carer, but right now even more so.

OP posts:

shazian · 10/03/2011 12:49

really feel for you Sparkle, and for your poor ds. Hope you have someone at home or on phone to speak to, know it wont change anything but sometimes its better to talk and have wee cry. I understand not wanting to take it further, hopefully you will get some much needed answers to your ds condition soon. Have a , and keep talking here if noone at home, dont have to feel down on your own. Your doing a fantastic job with your ds.

Original poster

SparkleRainbow · 10/03/2011 12:51

I am alone, but don't worry I am having the wee cry anyway. Will put the kettle on now though.

OP posts:

EllenJane1 · 10/03/2011 14:07

for you Sparkle. A good cry always helps a little.

bigbluebus · 10/03/2011 14:17

Sparkle Don't you just wish they could come and live a day in your life instead of sitting there in their offices for 8 hrs a day.It's hard to believe that with 15 pages of evidence they have turned you down again - do they think you've made it all up? I understand how upset and worn down by the system you must be feeling. My DD gets most of what we apply for without question as she has such severe and obvious disabilities, but just applying for everything once gets me down so no wonder you are at your wits end. Is there an organisation who can help you with the appeal and take some of the strain out of it. We have an advocacy service in our area who will take on individual cases. Anything similar where you live?

Original poster

SparkleRainbow · 10/03/2011 14:37

I'm not sure whether we have an advocacy service, how do you find them?

I so wish they could just live a day in our lives, or even better an hour in ds's shoes. His teachers could do with doing that too, and the LA support services. Then they might actually try to help him.

OP posts:

Bluesunbeam · 10/03/2011 14:48

Sometimes CAB can help with DLA, I guess you have tried this.

Will the school support your application with a statement/letter? Your GP? or the school nurse?

It is so hard to keep going at times but you can do it. Have a few weeks rest and you'll be ready again.

You have one month to ask for an appeal and they will automatically look at your claim again before they send it to tribunal so that's another chance there.

HTH a little

Original poster

SparkleRainbow · 10/03/2011 14:54

I haven't tried CAB. His class teacher has been supportive, she even attended the dla dr examination, in which the dr did not examine ds at all. Everything she said has been ignored. The gp supported, but everything he said has been ignored too. They still didn't bother to ask for reports from ortho surgeon we had, clinical pyschologist, physio therapist, PDSS, and rheumatologist was asked and responded confirming dx but saying they would have to pay him to give details about how ds was affected, as he didn't ever ask those questions in appointments ever two months, which although unhelpful is actually true.

OP posts:

Original poster

SparkleRainbow · 10/03/2011 14:57

I also sent copied of hospital admissions, discharge sheets, orthotics reports, gp letters etc, but no. That is why I feel I have to give up, they have had the equivalent of two A4 ring binder files full of info. There is no point anymore.

OP posts:

Bluesunbeam · 10/03/2011 15:08

Sparkle, there is always a point, your child.

I don't know exctly how you are feeling but it seems to be somewhere similar to me about 8 months ago. Please remember that this will pass and you will go on to fight for your rights and your child's.

Google CAB and Children's advocacy services to find ones local to you.

I think, right now, you need to look after yourself and take some time away from the paperwork and stress of it all.

When you're ready you will be able to fight again for your rights.

It is incredibly hard watching your child suffer and not being able to do anything about it, our physio actually said that ds would have to learn to put up with the pain! Unfortunately I believed her, and didn't forgive myself until very recently when I came back with a vengance! I have recently been described as a rotweiller!

You will get there too.

shazian · 10/03/2011 15:32

Agree with Bluesunbeam there is a point, both for you (to make it easier financially), and for your poor ds who obviously has problems. Our local SW dept help to fill in forms etc, do you have a social worker that can maybe help? Or try CAB. Hope you do go to tribunal, even if you give yourself a break for now from all the paperwork & stress. After sleeping on it tonight, i hope tomorrow is a brighter day for you :)

intothewest · 10/03/2011 15:57

I cannot understand why you find yourself in this situation-It must be so frustrating that they are not listening!I agree with the poster who said to put it aside for now;but gather your strength and carry on when you feel able

debinaboat · 10/03/2011 16:17

Try your local council office ,If there is a welfare rights dept then you can hand it over to them. They are a great help if you decide to go to a tribunal.They do all the work for it, you have already done the hardest parts, the application form and asking for the decision to be reconsidered are the most daunting parts of the process.In my case,they did an appeal for dla for my ds after being turned down,and being turned down again after i asked them to reconsider .The welfare rights officer did everything from the moment i asked for their help.All the paperwork,submiting the appeal etc,she even attended the tribunal with me.Out of the whole process the appeal was the least stressful and the least work for me because i had someone else doing it for me, .She was also a really kind person and i never felt like i had to convince her my son was entitled to dla, she was already "on my side" if you see what i mean. I hope you dont give up . You have done the hardest part and if you can get the help with the appeal you can take a bit of a back seat and let them do their job.Its not fair that we have to fight for everything for our kids, but if we dont ,who will? good luck.

Original poster

SparkleRainbow · 10/03/2011 17:51

I know that what you have said is good advice but right now I am not sure I can even bring myself to explain to another person what my ds has and how it affects him, what life is like for him, his siblings and me. I am just fighting all the time, teachers, schools, LA, NHS, certain drs, referrals and now dla again. I know that everyone on here has to battle exactly the same way, I am so angry that we have to, but I have bottomed out now, I have no energy left to fight. Just trying not to curl up and cry, but pretend that life is normal for dc, am failing at that too at the moment.

OP posts:

bigcar · 10/03/2011 17:58

oh sparkle, sending you hugs. Try to get some time to yourself to recharge your batteries and have another think in a few days when things are a little calmer. I know it's easier said than done but even a long soak in the bath with a book is a good distraction.

MADABOUTTHEBOY2000 · 10/03/2011 18:23

cab can help i went to welfare rights with my first one ever but they have now merged with cab but they were very good and i was awarded it first time so id give em a whirl

flyingmum · 10/03/2011 18:25

dunno what to say but sending you lots of virtual hugs as it sounds so crap. I would put it to one side for a bit. I understand fully about just wanting to run away and be normal for a bit and not have to explain.

Why are the school being peculiar. Don't think you have to reply to that if you are too world weary with it all. I understand only too well that hear we go again with all the explanations. But as a teacher I'd b interested.

You sound absolutely done in. Is there any way you could treat yourself to a bit of time out - a massage or a walk or something where you can just have a small amount of down time or are you at the stage where there are 'scorpions in your mind' with thinking about it all and nothing will get rid. If it is the latter I heartily recommend a walk it really helped me.

Every best wish.

bigbluebus · 10/03/2011 19:16

sparkle The advocacy service in our area is called A4U and used to be called DIAL which stood for disability advice and information line (or something like that), but not sure if these names are used nationally. These places are usually listed on links from local Disability groups websites - try looking on Family Information Service Directory for your local authority (if they have one) or failing that a carer's contact organisation in your area - they should be able to point you to an advocacy service. I also agree with debinaboat. Your LA should have a welfare and benefits dept. I have just used mine as the DWP cocked up my daughter's ESA claim so I took the problem to the welfare officer who told me exactly what the DWP had done wrong, wrote a strong letter(within 2 days) for me to send with the re-application and requested compensation equal to the loss of other benefits we would have received if the DWP had done their job properly in the 1st place. The welfare chap was the most helpful, kind and sympathetic chap I could have hoped to meet and he detests all things the DWP do wrong (and he used to work for them!).
There must be someone out there who can help you and take the strain - it's just a question of finding them.

justaboutsmiley · 10/03/2011 19:49

This reply has been deleted

Message withdrawn at poster's request.

deepbreath · 11/03/2011 13:59

I'm so sorry to hear this, Sparkle. My heart sank when I saw the thread title and that it was you.

The problem is that I know several other Mums that have sent pages of supporting information for a DLA claim and the DWP haven't read any of it. A friend had someone else's form and other sensitive information sent to her when she asked for some of her stuff back - how did they make such a mistake? They got a teenage girl confused with a much older man. Completely different d.o.b. NI numbers, addresses and names.

elliejjtiny · 11/03/2011 14:04

I'm so sorry. Your DS deserves to get DLA and you shouldn't have to fight

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