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#1 Caroline77

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Posted 30 November 2012 - 09:12 PM

Hi

My 6 yr old son has recently been diagnosed with Aspergers. I was told I may be able to apply for DLA but I am not sure how I would qualify?

He hates leaving the house, and needs someone holding his hand constantly. He fears other children, and adults, and wont even step outside my front door without me.

He doesn't sleep well. Goes up at 7, and it sometimes still awake at 10pm, and waking very early. Some nights I have found him in the bathroom, standing on the toilet seat peering out of the window (which is a huge window :( )

He cant walk for long as he hasn't great muscle tone. its quite poor on his left side, and he complains his leg hurts when he walks for long periods...but also hates walking because he is terrified we will walk past a strange child, and they will try and talk to him.

He chews everything. Clothes, bedding, cushions, everything...and its costing a fortune to replace.

Am I likely to get anything? Not sure whether its a waste of time applying.

Thanks :)

#2 Special_talent123

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Posted 30 November 2012 - 09:18 PM

This may help

http://www.autism.or...-allowance.aspx

#3 Willow-Tree

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Posted 30 November 2012 - 11:04 PM

Yes you will probably qualify for it. You can claim it on his behalf until he's 16 I think it is. The forms are pretty extensive, but just explain in great detail how much help he needs which is beyond what a child his age would normally require - explain some of the worst case scenarios that you have experienced with him.

The link Special_talent123 has given will be useful.

And here'e the government link https://www.gov.uk/d...nefit/overview

Good luck :)

#4 Sally44

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Posted 01 December 2012 - 06:17 AM

Usually most cities have an organisation that helps you complete welfare paperwork and also carry out benefits check. Ask your citizens advice who that is.

DLA has two elements: Care and Mobility.

And the person who helps you complete it should know exactly what information they are looking for.

For example, from your post you have stated that to ensure his safety you need to hold his hand at all times. That is not typical of a child his age. And I presume you need to hold his hand because he might run off, or put himself in danger because he has no road safety or stranger danger awareness. He also cannot walk long distances.

You've also detailed some items on the care side. I presume you still need to sort out his clothes. Does he need repeated prompting to get dressed. Do you still have to brush his teeth ie. his self care skills are not yet developed.

He wakes up at night, and so you are having to attend to him during the night.

It is definately worth applying for DLA, because the level of DLA you get can affect other benefits, such as Council Tax Benefit. And it is also evidence of need, which will be useful if you need to apply for a Statement of special educational needs.

You may also be entitled to payments as his Carer too.

And if you get Working Tax Credit/Child Tax Credit, the DLA will allow you to claim the "disability" element of the child tax credit.

#5 Caroline77

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Posted 01 December 2012 - 02:33 PM

Thanks for the advice.

I have to hold his hand as he has a severe fear of other people. Especially children. He wouldnt run off just because he is terrified of people he doesn't know.

I still have to help him get dressed, get all his clothes out, help him with his teeth, hair etc. I tell him repeatedly to do things, but his mind wanders, and if I dont help him, it will never get done.

When he wakes at night, it takes alot to get him back to sleep as his mind is so active.

I am walking dead half the time, I am so tired!!

He definately needs more help than the average 6 yr old.

#6 Lyndalou

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Posted 02 December 2012 - 08:31 AM

Slightly off the topic Caroline but I feel strongly reading your post that you may require some help to address the anxiety issues your child has. Anxiety is very much part of the ASD mindset but in order to functon as best as is possible for the person, that anxiety needs to be managed somehow. Being apprehensive around others of the same peer group is common in people with ASD. I see the apprehension in my son's face when he is confused and uncertain as to how to interact with other children. In myself, I have always called it 'the giant question mark' hanging over my head. It IS frightening but it doesn't have to be completely debilitating.

I assume your son attends mainstream school? If this is the case, then presumably he is having to face these fears every day which must be very difficult for him. He is possibly mulling over many things afterwards which impinge on his sleep. Is there any way you can introduce him into environments with children which are less stressful for him? By learning to interact with children who pose less of a 'threat', he may be able to start overcoming the fears which overwhelm him. I take my son into situations with 'mainstream' children as he needs to learn to deal with everyday environments but I also try to provide him with lots of downtime by himself or low stress play opportunities with other children with ASD. I see a noticeable difference in how my son copes with his friends who also have ASD (or other disabilities) and children who don't.

#7 Caroline77

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Posted 02 December 2012 - 08:42 PM

we have just been pointed in the direction of support groups, and his school are going to try and pair him with another child to make his confidence grow a bit. He is very anxious, and it breaks my heart to see, so putting him with other kids would be awful as he just panics and cries hysterically :(

#8 Sally44

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Posted 02 December 2012 - 10:15 PM

What professionals are involved in school?
Is he seeing a Clinical Psychologist and/or OT for his anxiety?
What stage of special educational needs is he on?

#9 Caroline77

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Posted 03 December 2012 - 10:39 AM

At school, the senco and his teacher are involved with his paedatrician. He doesnt see a clinical psychologist , but has seen an occupational therapist last week for 2 hours about giving him things to try to help with his anxiousness, and trying to help him go outside a bit more independently. She has also given us things to try and help him calm before bed, but I am not sure whether I am to see the O/T again.

#10 trekster

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Posted 08 December 2012 - 04:13 PM

Thanks for the advice.

I have to hold his hand as he has a severe fear of other people. Especially children. He wouldnt run off just because he is terrified of people he doesn't know.

I still have to help him get dressed, get all his clothes out, help him with his teeth, hair etc. I tell him repeatedly to do things, but his mind wanders, and if I dont help him, it will never get done.

When he wakes at night, it takes alot to get him back to sleep as his mind is so active.

I am walking dead half the time, I am so tired!!

He definitely needs more help than the average 6 yr old.


This indicates to me that DLA should be awarded. Have you tried the NAS guides for filling in the form for a child. Mention what would happen if you didn't prompt and help him and anything that has detrimentally happened because you haven't helped him. Include how long it takes to settle him at night and how often with times you have to help him. Maybe a diary for a week detailing what you help him with would be beneficial here to illustrate the type of high needs your child has.

if you get stuck on how to apply im sure people here can give you a hand with wording the document. :-)

#11 Lynden

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Posted 08 December 2012 - 05:36 PM

Hi Caroline

It does sound like you would be entitled. The main thing you have to show is why his care needs are more significant than a child of the same age. Cerebra do a fantastic guide (http://www.cerebra.o...s/DLAGuide.aspx) for filling in DLA forms - it's what I used the first few times I did them. The CAB can help but if you have any autism support groups in your area they can often offer support with form filling too.

Lynne

#12 Sally44

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Posted 08 December 2012 - 09:38 PM

The most important thing about completing DLA forms [or any benefit forms], to for someone who knows to explain what exactly they are looking for, and to ensure that you give them examples that fit their criteria. So I would recommend you phone or make an appointment with Citizens Advice to find out WHO can help you complete the forms [that maybe CAB itself, or another organisation].

I sought advice again recently because I felt that my son's DLA needed to be re-assessed as he now has additional needs. I got advice completing the form and yesterday I got a Decision letter. He is going to receive High Rate Care and Mobility. That is what we were asking for. I am very happy with this outcome.

#13 Special_talent123

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Posted 09 December 2012 - 12:29 PM

Social services/ local autistic society can help fill them out. I know that my local autistic society is. Cr*p when it comes to social groups etc but they were great when it came to my ESA and no worries then I still received same level

#14 trekster

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Posted 14 December 2012 - 10:37 PM

really pleased with the good news Sally44.

#15 Sa Skimrande

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Posted 14 December 2012 - 11:01 PM

Isn't DLA being replaced by PIP soon ?

#16 trekster

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Posted 14 December 2012 - 11:03 PM

Yes but will take some time before child DLA will be moved over to the new system.

Try the benefits and work website after the weekend for more details.

Edited by trekster, 14 December 2012 - 11:04 PM.


#17 Special_talent123

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Posted 14 December 2012 - 11:44 PM

Isn't DLA being replaced by PIP soon ?


Next year

#18 dekra

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Posted 15 December 2012 - 02:29 PM

Caroline you definately should apply for DLA. I did it for the first time last summer when my son was 3 almost 4 and did not even have a diagnosis as yet. I used the cerebra guide that you have been linked by another poster above, I found it an excellent guide and I was also given a lot of useful advise by the wonderfully helpful members of this forum. We were initially refused any award but it did not overly concern me as I was told by to expect that. I asked over the telephone for a reconsideration and was asked my reasons which I gave. After a couple of weeks we were awarded middle rate care (my son was too young at that time for low rate mobility but I was told to reapply for that when he turned 5) for a 2 year period. There was a slight mix up with the initial date of award and I asked them to sort that (was worth about £100 to me) but I didn't realise this triggered a new full scale reconsideration, I full expected to have the award taken away again or reduced but I got a phone call from the decison maker asking lots of questions about his night time needs and again a few days later I found out we had our award changed to high rate care for 15 months. I was happy with the decison as like yourself we have a lot of night time problems so I always felt high rate was the most appropriate.

This year renewal was due and he was turning 5 all around the same time but we'd been through the diagnostic progress by then and had several letters and reports from various medical and educational professionals regarding his difficulties. I was slightly concerned as our diagnosis is not actually ASD and the condition of language disorder doesn't imply the full extent of his needs although it basically presents in a very similar manner to HFA. My form instead of writing on it and adding an extra sheet at the end like I did last time in almost all sections I just wrote "see addition information notes" and I sent in a printed word document comprising over 7700 words outlining every aspect of the challenges presented and differences from the average 5 year old. This time the decison came back within 9 days including posting time both ways!! We have been awarded high rate care and low rate mobility for the next 5 years. My husband says they just didn't want to have to read the same novel again everytime I challenged or renewal come up lol!

It really definately is worth the perseverance to get DLA. It really does ease the financial burden caused by a child that has additional needs and for my part was a validation that my son had such needs as even a lot of family members had constantly dismissed his difficulties as he didn't have the obviously physical disability of my cousins child (cue violins for her, I wasn't allowed to have a disabled child and share her martyrdom. Yeah like I want my son to have this!)

Sally - congrats on getting the award you deserve.

Sa/ST - Only adults are moving to PiP starting next year. It is expected to take a few years for this to be fully implemented and the lessons from the changeover learned. Until then there are no plans to change child DLA although it is expected it will eventually changeover but I would not expect this to be for at least 5 more years.

#19 Sa Skimrande

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Posted 15 December 2012 - 02:56 PM

Ah of course children will be unaffected in the short term as the onus on this new benefit is ideological in that it is the desire of government to get adults working and so reduce the benefits bill.

My DLA has steadily reduced since first claiming it, the exact same criteria on renewal produced a lower rates which went to appeal and the original decision stood, it was noticed my attitude started to decline with my reduced ability to improve myself through not having the funds to do so was implemented and where I was housebound others out and about, starting and running small businesses were on a higher rate of mobility and care than me. But the key component in their claims was that they had professional help through agencies that looked after their needs, carers and such, where I was on my own. And so I do now know the key is to get clued authorities to act on your behalf as do it on your own you wil be screwed over through not knowing what it is the benefit authorities are looking for.

And so I fear PIP and the universal credit as I am on my own.

But with a recent find online, I found the DWP handbook of medical conditions used for assessing DLA and I found in the that handbook, the condition I have is not even listed and so now know no matter how debilitating this thing can be as I age what I put in to DWP claim forms will fall on deaf ears through them not knowing the condition as it is not in their guidance handbook.

The future does not look at all rosy.

#20 dekra

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Posted 15 December 2012 - 10:15 PM

Can you find a diagnostic manual like DMS IV (or DSM V when it arrives) that has it in and send a copy of that with your next claim? Or a medical journal article at all?

But yeah I am sure PiP will be an ongoing source of worry for many truly disabled people and somehow the skivers it's designed to flush out will still work it to their own advantage. I really do agree our benefits system needs a serious overhaul but it never seems to work right does it?

#21 Sa Skimrande

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Posted 15 December 2012 - 11:44 PM

I will be questioning the DWP as to what it knows of KS given the lack of information in their medical handbook and if necessary I will be forwarding relevant conditional criteria if it happens I need to make a claim where it is my intention ready or not to get back to work asap as I cannot put up with the government vilification of people like myself any longer for what they have done is destroyed my belief in this country and for one they will never receive my vote ever on principal for they have declared their colours.

#22 Caroline77

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Posted 24 January 2013 - 04:37 PM

Hi everyone. Sorry I have not been back for a while. Good news, we have been awarded higher rate care, and lower rate mobility!! I am so relieved!!

Now, my teenager is being asessed, and my doctor thinks my 4yr old daughter should be too :/

#23 trekster

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Posted 25 January 2013 - 02:10 AM

Really pleased you got the DLA you need, good luck with your kids assessments.




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