Sign In

Please sign in using the log in form at the top of this page or click here

Not a member

You need to register before you can start a new discussion or comment on a post.

Click the button below to go to our forum registration page.

In this Discussion

Welcome to the PDA Society Forum. Please take time to read the 'Forum terms and conditions', which can be found via this webpage:https://www.pdasociety.org.uk/terms-and-conditions and also in our NEW Forum User Guide: https://www.pdasociety.org.uk/forum/forum-users-guide-created
Messages in the 'General Discussions' category of the forum are visible to all internet users. You are therefore advised not to post anything of a confidential nature in this category.
Welcome to the PDA Society Discussion Forum. Please read our User Guide for more information and contact forum@pdasociety.org.uk if you would like to join one of our closed Member Forums for registered members only.
Does anybody receive DLA (Disability Living Allowance)?
  • Hello,
    My daughter is 4 and strongly it's strongly suggested that she has PDA (the list of symptoms could be written solely about her). She is currently undergoing assessments.

    It's been suggested that we apply for DLA and I would say that she does have care needs that are more than an average 4 year old. We spend hours a day just convincing her that eating is a good idea.

    However I have read so many threads online about DLA being declined for children with an actual diagnosis of Autism and Aspergers that I wonder if I'm wasting my time even contemplating it.

    So does anybody here receive DLA for a child and if so what rate do you receive?

    Thank you very much.
  • webbwebb
    Posts: 2,581
    Hi, sorry for the short reply, hope others will be along soon.

    With regard to claiming DLA -
    1. It is best to wait until your child has a written diagnosis from a Health Professional (this will help to prevent DWP refusing)
    2. It is best to get assistance in filling out the form - Welfare Rights Office, CAB, or local Autism Charities may help.
    3. The more evidence you have from professionals the better chance you have.
    4. All PDA children vary in their difficulties and need for more supervision than 'the average child' so it is impossible to say what rate of DLA you would receive.

    I applied for my 2 sons when they were 5 and 7 years old and we were awarded the Middle Rate for both which really surprised me as one has PDA and one has Asperger's Syndrome.
    When I applied when they were both in their teens -
    PDA child needed 1;1 all day every day so he got High Rate Care
    AS child never slept more than 2 hours a night so we got high rate care.

    (There is also the mobility level - most children with PDA get lower rate but some do get high rate)

    It is hard to claim DLA at the current time as the DWP are trying very hard to cut their budget/reduce benefits but if your child needs more care than the average child it is definitely worth applying but make sure your child has a diagnosis, include as many reports as you can and get some help to complete the forms.
    If you are refused at your 1st attempt - Appeal!

    I worked in a charity that supported parents of SEN children and I helped many parents get DLA for their children, however many claims came back refused, we appealed and many decisions were reversed before the day of Appeal day or at the Appeal Day.

    Hope this info is helpful





  • https://www.gov.uk/disability-living-allowance-children/how-to-claim

    Once they get to 16yo you have to reapply under PIP.

    You should definitely apply and I agree with webb to get help with the forms so you know how to complete it. Since the Children and Families Act 2014 Parent Partnership were renamed to SENDIASS and there should be one for each region. They are good at helping as well. https://www.sendirect.org.uk/information/i-need-information-on/how-to-choose-the-right-service/advice-support-participation-and-training/information-advice-and-support-services-previously-parent-partnership-services/

    You might get low rate mobility as an autistic child has lower danger awareness than normal and socialising issues so they need supervision. However, as she is 4yo they might say she needs that level of supervision anyway and not award anything for mobility. It depends how severe her difficulties are when out. Such as does she drop to the ground and refuse to walk, does she have meltdowns and put herself at risk of stepping into the road. The disparity comes more as they grow and still need levels of supervision a non-autistic child of the same age no longer need, which is where the rate can even increase.

    If they refuse you can appeal. It's a bit like EHCPs, they often refuse first time round so only those who are committed to retrying will get it. But you do need to provide as much evidence as possible, they take the view that even if someone has a condition, it can affect people differently so they make no assumptions. Unfortunately many parents give up having been refused, they should stick at it and appeal because if they don't they will never know. It is definitely more expensive having a disabled child for a whole variety of reasons and that's what DLA is all about.

    Here is the guide DWP staff use to make their decisions: https://www.gov.uk/government/publications/medical-guidance-for-dla-decision-makers-child-cases-staff-guide
  • Thank you both for replying. I will wait until we have a diagnosis or at least a host of reports from paediatricians.

    Yes she does drop to the floor and refuses to walk. She also demands to be carried.
  • paulfoel
    Posts: 13
    Complete nightmare trying to claim this. Got turned down as did the reconsideration. We've not gone to appeal.

    That got adjourned today because they want to contact the school.

    Problem is he needs PLENTY of support when hes home but he masks brilliantly at school. Hes a master at it (which I understand is common). The school have been useless in the past and been oblivious to be honest. They're "feedback" was not helpful when we got the diagnosis.

    So what are the rules exactly for any rate DLA? I've got a feeling their going to say "hes fine during the day in school so you can't have anything".
    Seems to preclude ANY Aspie kid who attends a mainstream school and masks like this.
  • webbwebb
    Posts: 2,581
    If your child 'masks' in school, you may need to submit evidence/report from others who see/care for your son outside of school, so that they back up your claims about your son needing extra Care and Supervision (more than his peers)..

    Relatives, Club Leaders, Psychologists etc etc, could all write something for the DLA/DWP Tribunal - you would need to submit them before the Day.

Please Log in or Register to comment on this discussion.