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Support for attending UC appointments?

Hello_world

Hello, I’m new here and usually don’t post online but have been looking around for some information and was hoping someone might have experience and can offer some advice.

I was diagnosed with ASD in Feb last year while I was on maternity leave. I was also made redundant while on maternity leave so have been claiming UC. Overall it’s been a positive experience for me since diagnosis because I’ve felt I can finally make necessary adjustments in life and for the first time I’m not doing anything full time (work or education) and realising how much of a difference this makes for my well-being. 

Initially I was not expected to do any work search related activities because I was caring full time for my child. But I have recently started attending appointments in preparation for transitioning to work search (as I understand it). I had one appointment end of Nov and there I just had to tell them a bit about my long term plans etc and that I was expecting to have more time once my child starts nursery in Jan. The person I met told me I wasn’t expected to do anything at this point. 

I just had another appointment today which did not go well. It was the same person as last time but she started asking me what I had done since last time in terms of preparing for work, and kept pressing that I was running out of time and would be expected to do full time work search very soon. I got very stressed and had a negative reaction to her questioning. I tried to explain that I was having difficulties with the information she was requesting because it was completely different from what she said last time. I also mentioned my autism at 3 separate occasions but she just looked at me like I had 3 heads. 

I came out of the appointment all shaken and could barely speak. I had a big cry when I got home. It all left me feeling like there were misunderstandings that could have been avoided, and the appointment did not have to feel so difficult if the person had taken my condition into account.


I have logged my condition with UC and while doing so said it’s something that does affect my ability to work etc. Does that automatically make a difference or do I need to separately request further assessment for it to matter at these appointments?

I feel I could really need someone to come with me to appointments like that, to help with communication but also to kind of witness what they say in one appointment compared to the next (they apparently don’t make notes) but I don’t actually have anyone that I can take with me. I don’t have family and only have 2 friends that are also ND.

So I guess my question is if anyone knows if there is any support I could get with this that isn’t from a friend or family member? 

  • in reply to StainedGlass66

    I wrote in my journal about asking to see a DEA and this is the reply I received today:

    ”DEA's do not see customers on a caseload, the adviser you spoke to was previously a DEA.”

    So I guess that’s a no. I don’t really know what caseload means?

    I have requested a fit note from my GP so I can start the work capability assessment process at least. I previously wasn’t aware that’s what I needed so am a bit late with it. 

  • in reply to StainedGlass66

    Hello,

    I wonder if I can run something by you regarding the job centre as this thread has been very informative! 

    I'm currently awaiting my autism assessment (due in 2 years!), and i struggle with adhd and ocd. I've lived in Wales for almost 6 years and I've been looking for a job for the past 3! 

    Anywho, I've written in my journal several times about my AuDHD but with no response. I just want info on how the jobcentre can help, or if they can help. I'm desperate to work, I've always worked but I've found these hurdles and difficulties lately. I really struggle to speak on the phone too. 

    Are there work coaches available for ND folk?

  • in reply to StainedGlass66

    Hi, thank you so much, that’s super helpful!

    I also just had someone tell me yesterday that to do the work capability assessment with UC I need a fit note from the GP first. I had not realised - I thought me updating my circumstances with UC and advising it affects my ability to work would start the process. Feel a bit silly now as much time has been spent waiting for nothing to happen. Oh well. I am getting this sorted now.

    In the meantime I will take on your suggestions. I have spoken to citizens advice as well and they confirmed they can help me fill in the necessary forms.

    I am pretty sure I won’t qualify for PIP. I actually went through that whole process with my ex partner and it was pretty horrible. 

  • in reply to Hello_world

    Work coaches see so many people after a few weeks specific details are forgotten unless something really out there happens! So please don’t worry. I’m sure they’ll be delighted to hear you want to set up your business and you could ask about any support to do thst from them or local council. When you’re ready to set up ask to see a self employed work coach. They will keep you right with how to declare earnings, and what costs you can deduct and potentially still get UC. They may also be aware or run business enterprise sessions. There is lots of help available. 

  • I used to work in a job centre. For anyone claiming UC your commitments (what you’ve agree to do in turn fir UC) need to be tailored to your situation. You can ask for them to be reviewed especially if your circumstances change. If you have a young child then there are set in stone things you you either need to or don’t need to do depending on their age. 
    here is the link regarding child ages and requirements under number 7. You will not be asked to look for work until your child is three. Before that between 2-3 you can start to prepare for work. That could be researching a job market. Finding out about courses or training requirements for something. Updating CV or joining a local job club or third party support provider. You can ask for them to suggest some that are suitable. For prep don’t take on to much all at once. You just need to have a positive willingness. 
    Regarding your autism I would ask for an appointment or potential transfer to a DEA (disability employment advisor) they have longer appointment times, so you won’t feel rushed into the 10 minute slots they are sadly given. They also have more links to local community support that may help you.
    You can mention to your work coach in your journal messages or next meeting that you felt rushed and confused last time.  Mention you felt very overwhelmed due to your autism and processing the new information, that this led you to be very emotional and reach out to the autistic society for support as you were worried about what happens next time. Mention you would like someone to accompany you and ask  if the DEA work coach could suggest local providers that may do this. You could also ask them to put everything covered in a journal message to you so after the appointment you could read it again and have a copy/record of it. 
    You may also be entitled to other benefits depending on how much your autism impacts you. I didn’t work with them but things like disability living allowance (DLA) or (PIP) Personal Independence Payment of which there are two levels. I’d highly recommend you get Citizens Advice or another agency to help you apply and fill in the form. They know how to frame any struggles the right way and the info required to support a successful application. Good info on second link When completing forms fill them in from the perspective of your worst day/week rather than your best  

    I hope you have a better experience next time. Don’t be worried about asking for help the process can be daunting for many. Ufortunately most work coaches now only have 10 minutes to solve many issues and they’re frustrated they can do more. 
    it would be good to hear how you get on Blush

    . 
    https://www.gov.uk/government/publications/universal-credit-and-your-family-quick-guide/universal-credit-further-information-for-families

    https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-health-conditions/claim-pip-for-autism

  • in reply to Hello_world

    There is some local support in your area:

    https://www.southampton.gov.uk/adult-social-care/needs-abilities/local-autism-support/

    Hopefully something from their directory or helplines will be of use.

    Good luck

  • in reply to Iain

    Hi Iian, thank you. I am in the Hampshire area.

    My CV is up to date. However I am planning on setting up my own business (it’s pretty much ready to go just need the time available to actually do the work).

    I’m a little bit worried that after how the last appointment went it’s going to make it really awkward going forward :(

  • in reply to Hello_world
    Hello_world said:
    I’ve had a look at the directory already and there wasn’t anything in my area

    What is your town or county and we can possibly come up with some suggestions for you?

    in the meantime, have you created an up to date CV? This will be one of the first things for any applications.

    Your experience with the lack of autism awareness is a common one I'm afraid. I always found it safer to assume that whoever I speak to will either know nothing or have a negative response so I take either a notepad or a recording device (your smart phone should do this is you use one) and record the UC session with their permission.

    Just tell them you have issues with recallection so this is to help you keep a list of tasks and info on hand to make the most of their time in the meeting.

    This little bit of ego stroking tends to get over their natural desire not to be recorded in case you choose to use it against them if they mess up, but be prepared that they have the right to refuse as I understand it.

    For someone to go with you I would also look at any local autism groups or charities who may be able to provide or recommend some support resources for you.

  • in reply to Karin Mod

    Hi Karin, thank you for replying. I’ve had a look at the directory already and there wasn’t anything in my area unfortunately.

  • Hi Hello-world,

    Thank you for posting and telling the community what you are going through. The NAS website has a directory and you might be able to find some help near you. You can insert your town or postcode in the search box. Here is the link: https://www.autism.org.uk/autism-services-directory

    All the best,

    Karin Mod