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TOPIC: 18 year old too ill to work

18 year old too ill to work 11 months 2 weeks ago #196443

I'm my 18 year old son's appointee and he has moved successfully from DLA to PIP (HR Care + standard mobility). He has regular hospital admissions of 10-14 days every 6-8 weeks and then takes quite a while to recover from the treatment. He has a long term and life shortening genetic condition which is leaving him increasingly exhausted and less able to do much. He is quite unwell most of the time, and, despite wanting to work, he is usually incapable of getting up for more than a few hours a day, and rarely goes out of the house now, although he was very independent and sociable a few years ago until his health started to decline. He looks fine and can do everything on the ESA form though, and always says he's 'fine'. I have been looking at what financial support he can get but it's not clear what he should do now. His Dad will soon retire, and we want to know he will be able to be less financially dependent on us. He lives at home and we don't claim any benefits except his PIP and I get CA, and no longer work. He's only been to school for about 30 days in the past academic year as he is too ill (fatigued, breathless, chest infections, severe gastric symptoms, migraines etc all common with the later stages of his medical condition). He's just lost his EHCP as he feels unable to manage any studying, and despite excellent GCSEs (with under 60% school attendance) has been unable to manage the work for any AS or A levels. Any ideas what benefits he can claim to enable him to be a bit more independent of us?

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18 year old too ill to work 11 months 2 weeks ago #196447

Hi J,

I'm sorry your son is so poorly, it is a mother's worst nightmare :(

Forgive me, I am going to be blunt - I find it hard to believe that he can complete all of the ESA activities given what you have said about his exhaustion and inability to manage educational or social activities.

Don't forget that it is not about completing an activity once but about reliability -
• Safely – in a fashion that is unlikely to cause harm to themselves or to another person.
• To a necessary and appropriate standard – given the nature of the activity.
• Repeatedly – as often as is reasonably required.
• In a timely manner – in a reasonable time period.

There are also the 'exceptional circumstances' descriptors that could come into play if all else fails.

I suggest you have a good look at the ESA guide with this in mind


Other than that, I suggest you put your son's details into one of the on-line benefit calculators to see if there is anything he is entitled to.

If you would like further advice about ESA, please reply to this message and we will do our best to help :)
The following user(s) said Thank You: J

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Last Edit: by Mrs Hurtyback.

18 year old too ill to work 11 months 2 weeks ago #196456

Thank you, support much appreciated. I guess we start with ESA then. I've looked at the online thing where you can see if you score any points and filled it in as if I'm him, but hardly got any points. I'll revisit it with what you've said in mind, particularly the exceptional circumstances. I'm most concerned as we are getting on a bit and if something happened to us how he would live and on top of all the physical issues, he's also dyslexic and can't fill in forms very easily. I don't think he wants to even apply yet, but he's due another admission soon and we'll be discussing it with the care team, so I reckon we have a month or two to get to grips with things. He did get PIP without a F to F, which was a huge relief. I'll try the calculator and have another look. :) Thanks Mrs Hurtyback

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