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on pip and starting 1st job

Cheesecake Community member Posts: 5 Connected
edited July 2023 in Work and employment


My 19 year old son is on the autism spectrum. He has suffered for many years with conditions associated with this including delusions and paranoia and is now on two different types of medication.

Current ongoing problems include executive functioning skills self-care (washing, hygiene, choosing correct clothing to wear etc., food choices.) He cannot be trusted to manage his own medication at this time as he simply ‘forgets’ along with things like personal care. He also has major difficulties on public transport as due to his size and demeanour he gets picked on so we take him everywhere.

He has previously self harmed, attempted suicide and had paranoia and hallucinations. We couldn’t let him out of our sight and he could not be trusted to travel independently and has had psychotic episodes for which we had to get in touch with the Mental Health Crisis team.

Since taking this new medication we have seen a major change. He still requires a lot of support, supervision and prompting etc. and needs help managing his finances etc, but he has recently passed an interview and got a job, in a call centre but it is basic call handling. His new employers are aware of his condition and have so far been very supportive towards him.   He is a little isolated and still has no friends, as social situations are still difficult for him but this job seems to have helped his confidence and as parents, we are hopeful that he has turned a corner and that this helps him to become more independent in the future.

My question is, when he was at his absolute worst when we 1st claimed pip and at 16 years old and couldn’t be left alone, as parents we didn’t think he would ever have an independent life so we were awarded high rate pip for him. ( we had tonnes of paperwork from mental health teams associated with his care including proof of hospitalisation when he had a psychotic breakdown.) His conditions have improved and we have seen a major change in him with this medication and the support us and his employers have given to him.

He is still autistic (always will be, there is no cure!) he still needs prompting and guidance, needs to have his medication managed for him etc., but it isn’t right for me to continue to claim the current amount so will need this to be reviewed, I also want to put pip into his name, as I am in my 50’s and wont live forever. I know this is classed as a change, please can you advise how I go about this? Many thanks


  • woodbine
    woodbine Community member Posts: 11,928 Disability Gamechanger
    Carefully is how you go about it, please get advice before doing so, try somewhere like Welfare rights if you have one local.
    2024 The year of the general election...the time for change is coming 💡

  • bg844
    bg844 Community member Posts: 3,887 Disability Gamechanger
    Starting work isn’t a change of circumstances for PIP and as such, they do not need to be notified. You only should report a change of circumstances if his conditions significantly improve, this might not be straightaway or at all. If you do go ahead and report, your son will be required to go through the reviews process which can cause so much unnecessary stress, making his conditions worse.

    Remember, he was awarded PIP based on the level of needs with his Daily Living & Mobility activities.

    To remove your appointee status, you need to phone PIP.
  • DayDreamBeliever
    DayDreamBeliever Community member Posts: 75 Courageous
    Is he only doing so well because of the support he is receiving though? PIP is more about the supports you need as opposed to struggles. If he still requires the same level of support then he is still on the correct level for PIP. 

    PIP is an in work employment - starting work is not a change in circumstances for PIP and neither is removing yourself as appointee. But be aware that removing yourself as appointee means they will no longer speak to you regarding his claim. So if there are changes or issues he will need to call and speak to them himself 
    Pronouns: She/they 
  • Cheesecake
    Cheesecake Community member Posts: 5 Connected
    Thanks for your advice. I am not confident he would cope without the support he is getting now. 
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