Child DLA Reapplication
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My son was awarded high rate care low rate mobility four years ago. He was diagnosed with ASD then. Now he is in a specialist school, has an EHCP and I am awake most nights because he still suffers anxiety and night time is when he gets most stressed and has problems sleeping. If I'm not awake, I can't try to calm him down so he can sleep and go to school. Things have improved a lot since he started attending a specialist school however, his attendance has gone from extremely low to a much better 76% (although I appreciate there is room for improvement still).
He seems to be able to talk, but has real problems with knowing what's appropriate behaviour/talk. He can get very wound up by very small remarks, but then it takes days/weeks to get him to talk about whatever is causing a problem because he finds talking about emotions very difficult. I am trying to help him develop independent living skills but he finds it very difficult to remember things he's learned. He still can't butter bread etc. Learns the skill, then forgets it again. Dressing is difficult as he won't dress appropriately for the weather (won't wear a coat, will only wear soft things, shoes are a nightmare). He goes in a taxi to school, but rarely leaves the house for anything else even though I do try. He gets overwhelmed after half an hour and then we just have to turn tail and head home. However, the toileting problems he used to have seem to have gone mostly. I very rarely have to spend time at night on that now. But I'm still up most of the night or cat napping to make sure he sleeps and dealing with anxiety. I don't know how to explain this on the DLA form.
He did have a recent OT type assessment through the school, she found that he had real problems writing but could use a laptop instead, had fine motor control defecits and low strength, but not sure this is helpful for the DLA application. In Kent, once a diagnosis is made, no other help is offered so he doesn't have a consultant I can ask for a report. Our GP surgery doesn't actually have any GP's lol (yeah I know), they all walked out after the practice was joined to another practice so there's no one I can go to there. They did see him when he was having problems attending school and wrote a couple of letters in support. But again, how this helps with the DLA form, I don't know.
Last time I had help from Kent Autistic Trust filling in the DLA form. They were brilliant, but the person who helped has left, and the new person is on compassionate leave (sorry for the need of course) so I have no one to go to for advice on how to fill this form in. I have ASD too, finding I am very overwhelmed at the prospect of filling in this form this time.
I am posting on here because I am not sure how to translate the challenges so they help with his DLA application. I will send his EHCP (I only have a draft version, trying to find out it if was ever finalised) and the OT report, and his original diagnosis. This is all the 'evidence' I have. There is only me (we don't have any kind of network), so no one else I can ask for statements.
He seems to be able to talk, but has real problems with knowing what's appropriate behaviour/talk. He can get very wound up by very small remarks, but then it takes days/weeks to get him to talk about whatever is causing a problem because he finds talking about emotions very difficult. I am trying to help him develop independent living skills but he finds it very difficult to remember things he's learned. He still can't butter bread etc. Learns the skill, then forgets it again. Dressing is difficult as he won't dress appropriately for the weather (won't wear a coat, will only wear soft things, shoes are a nightmare). He goes in a taxi to school, but rarely leaves the house for anything else even though I do try. He gets overwhelmed after half an hour and then we just have to turn tail and head home. However, the toileting problems he used to have seem to have gone mostly. I very rarely have to spend time at night on that now. But I'm still up most of the night or cat napping to make sure he sleeps and dealing with anxiety. I don't know how to explain this on the DLA form.
He did have a recent OT type assessment through the school, she found that he had real problems writing but could use a laptop instead, had fine motor control defecits and low strength, but not sure this is helpful for the DLA application. In Kent, once a diagnosis is made, no other help is offered so he doesn't have a consultant I can ask for a report. Our GP surgery doesn't actually have any GP's lol (yeah I know), they all walked out after the practice was joined to another practice so there's no one I can go to there. They did see him when he was having problems attending school and wrote a couple of letters in support. But again, how this helps with the DLA form, I don't know.
Last time I had help from Kent Autistic Trust filling in the DLA form. They were brilliant, but the person who helped has left, and the new person is on compassionate leave (sorry for the need of course) so I have no one to go to for advice on how to fill this form in. I have ASD too, finding I am very overwhelmed at the prospect of filling in this form this time.
I am posting on here because I am not sure how to translate the challenges so they help with his DLA application. I will send his EHCP (I only have a draft version, trying to find out it if was ever finalised) and the OT report, and his original diagnosis. This is all the 'evidence' I have. There is only me (we don't have any kind of network), so no one else I can ask for statements.
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Comments
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I don't know if you could get any help from https://www.sunshine-support.org/ but I saw a link to them elsewhere and they do look potentially useful. What I saw was a piece about school attendance difficulties, which again you might find helpful.Signature removed for peace of mind1
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You could try your local advice charity:
https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/disability-living-allowance/before-you-claim-dla/check-if-you-can-get-dla/
National autistic society: https://www.autism.org.uk/what-we-do/help-and-support
https://www.scarboroughryedaleccg.nhs.uk/wp-content/uploads/2019/06/National-Autistic-Society-DLA-tips-for-parents-and-carers.pdf
Contact a family:
https://contact.org.uk/advice-and-support/benefits-financial-help/benefits-and-tax-credits/tips-on-completing-the-dla-form/
Starting point for the renewal form would be the previous DLA form - hopefully you have a kept a copy.
This is a helpful site with very good guides, but membership (required to access the detailed DLA guide for children) is c£20 pa. May be worth it, if you can't get other help.
https://www.benefitsandwork.co.uk/disability-living-allowance-dla/dla--resources
Alice Holt Forest situated some 4 miles south of Farnham forms the most northerly gateway to the South Downs National Park.1 -
Thank you for your replies. I will look at the sites mentioned. Will update when I have finished the form.1
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