If DS cannot work query

[Verbena17]

Hi
DS is 18 and will be 19 early next year.
He has a total of 5 quals, 2 of which are English Lit and maths GCSES (level 8’s), plus a level 3 IT qual and some music awards.

He is quite academic but didn’t want to go to college or uni and is currently taking a year out from doing anything (he is learning a difficult language every day at home) and then we have no idea what’s next.

The difficulty is that although he’s academic, has an amazing memory and is a really laid back, lovely, polite young man, he has zero confidence and has GAD. He is anxious 24/7 and also currently has what looks like PoTS, as well as his autism diagnosis and ARFID eating disorder. I still have to go to medical appointments with him as he refuses to speak other than the odd thing and he physically stops hearing what they’re saying due to the anxiety.

Currently he has a good level of PIP and has not been reassessed since first award, although he was on DLA before PIP.
If say, he is unable to work for the foreseeable future, what can he claim in the form of benefits? Is there some type of incapacity benefit/unemployment benefit if you’re long term not able to work?

We are hoping that he will at some point be able to do some sort of work at home but that’s not ideal long term if he wants to meet people socially. He currently has such a low quality of life socially-wise. He is pretty depressed but keeps himself busy gaming and learning his langage.

I help him a little bit at a time learning new skills but that’s a very slow process.

He won’t learn to drive at the moment and wont/can’t travel independently and has no real need to.
He has zero friends except those he chats to on Discord and a couple of mates he was with at his special school.

Can anyone point me in the right direction to anything useful about benefits.
Job-wise, we are just going to have to wait I think - until he’s done a few more years of developing/maturing. I just feel so sad for him and for his future.

I think universal credit, if your his appointee for pip you should be able to be his appointee for uc. Would have to put in fit notes to get lwcra, which can take months. They would sent you a form to fill in. Then if your his appointee they would speak to you and not your son??
Hopefully someone will clarify this, dealing with a houseful of covid at the moment.

Thank you. What’s IWCRA?
What do ‘fit notes’ consist of?

Hope your feeling better soon.

Sorry no idea but bumping your thread as I'm interested in any further answers

DS, or you as appointee, can apply for UC now.

LCWRA is limited capability for work and work related activity. A fit note is what was previously called a sick note. It is a note from the GP stating what the person can/can’t do, for how long etc.

Does DS have an EHCP? If so, you need an early review. If not, you need to request an EHCNA. An EHCP doesn’t need to be focused on academic work. It will give access to therapies, support, PfA DS wouldn’t otherwise receive.

Thanks.
Found LWCRA is limited capability for work and work-related activity

You/he can apply for UC now, as he’s not working and not in education. You can apply online, it’s very straightforward. We did this recently for our daughter, we were notified of everything we needed to do, we had a very easy process. Contact your GP and ask for a fit note for UC claim (they will understand about this). If your son is awarded LCWRA, this is an extra financial disability element added to his UC award and it also means they don’t expect him to look for work. He can get a job and earn £631 per month without it affecting his UC. If he earns over that amount it is deducted from his UC as x pence per £.

Thank you.
over the weekend, I kind of did a rough calculator thing I found and it looked like because of his savings, he would only get £47 UC a week. Although that in addition to his PIP I’m assuming?

Its an awful chicken and egg thing - seemingly he can’t get the benefits if you claim have savings but if you first spend all of your savings, which could have been for a house etc, you then go back to zero savings and can then never afford your own place.

Would the fact he lives rent free with us make the difference? So they won’t pay more because he has us supporting him currently?

Living with you means DS wouldn’t receive any housing element, but it won’t reduce the standard element or the LCWRA element.

Savings over £6k reduce the UC award. For each £250 or part of £250 UC reduces by £4.35. Savings over £16k mean UC stops. UC is completely separate to PIP, so DS would still receive that.

Ah ok thanks.

Also I didn’t necessarily mean to buy his own place - just have saving to be able to afford the rent for something.
So do you mean he could also get help with rent if he didn’t (at some point) live with us?

For those who rent, there is the housing element. Although for private rentals, it often doesn’t cover the whole rent. And the work allowance reduces for those who receive the housing element.

It’s all so confusing and also very constraining!
So basically it’s a housing association option or he has to be able to work to afford either his own house or rent privately. We currently live in a small market town with very little social housing - for him to find something like a flat that housing element would completely cover, he’d need to live somewhere away from us and not have us as his social support.

Hmm. Lots of think about!

Some manage to rent privately whilst being unable to work especially if they are on enhanced of both PIP components.

His PIP is about £670 a month and the cheapest private rental round here is £1000 for a 2 bed bungalow.

UC for an under 25 with LCWRA is £688.11 per month. Enhanced of both PIP components is £736.01 per month (£670 is per 4 weeks). So that is £1418.18 per month. On top of this there would be the UC housing element (which would be whatever the LHA for a 1 bed is in your area). Once 25 the standard element of UC would increase.

Then, less council tax than normal via council tax support/25% single person discount/SMI exemption/disability reduction (which depends on DS’s circumstances).

Discretionary housing payments are also a possibility.

Thanks that’s really helpful info to know.
Is there a good website I can find out all this stuff on?

The rates of benefits are on the government website.

Entitled to has lots of information on their website, too.

Hi verbena the thought of my dd future terrifys me.
Can't see her being independent by herself, still needs help with telling the time, never been able to do times tables. Her best option when her dad and I are no longer around would be some independent living place or a family member having space for her.
Ideally would like to win enough on the lottery for dd and some friends to live happily ever after, would be my dream.
Has your ds still got his ehcp, have you looked at what's available under the local offer.
Dd didn't want to go to college in another town, tried assisted internship which came to nothing. But found a small special college locally and has been there foe 18 months plus. Dd thrives on stability.

Hi @iwanttoscream we stopped our DS’s EHCP once he left his special school. He refuses to go to college and uni so in reality, there wasn’t much use for one. He wouldn’t have attended any therapeutic stuff either.

He’s currently having a year off, having spent pretty much his entire school career being burnt out.
He does talk about having his own place - he finds it hard living with other people (even us) as he has OCD about food prep, sharing bathroom (even with his sister when she’s back from uni) and stuff like that.

Im hoping that over the next couple of years, he really matured and decides to get a job. But currently, he won’t talk on the phone, won’t do an interview and can’t imagine how he would talk to anyone at work or even know what to do in lunch breaks etc (says he would just work all day long without a break).

Like you for your DD, I’m constantly worried about the future and what that will look like for him - especially once we aren’t here. 😞

Has the EHCP ceased? If so, you should request another EHCNA. An EHCP can provide so much more than DS is already receiving. For example, PfA provision (which can work towards independent living and could go as far as including things like driving lessons) or a budget for DS’s interests or equipment for his interests. The therapeutic provision needs amending so DS can engage. If it hasn’t officially ceased you need an early review.

It’s officially ceased.
He just wont engage with anybody /anything.
He’s currently sleeping in until after lunch because he stays up until 3am, then I take him for food (he has ARFID) and then we come home and every day, he is learning a new language.

He’s not currently wanting to learn to drive as he doesn’t trust other drivers.

It is far more likely to be can’t engage than won’t. And, the provision needs amending so DS can get to a point where he can engage.

An example of provision an EHCP could provide based on DS’s current interest is resources/equipment/a budget to support learning languages.

Have a look at the scope of what EOTAS can provide.

Yes it’s that he can’t engage but also, we’ve tried so many times to support him into interacting but it just causes him massive anxiety.

He’s learning the language totally by himself, using AI flash cards and a free online system platform. So other than that, there’s no help really that he will engage with or currently needs.

Pushing him to do those extra things will just take us back to where we were at school. He’s progressing much more at home in his own time.
The county transition woman was next to useless and didn’t get back to me.
Basically we are just going to do things at his pace.

Pretty sure EOTAS is only for under 18’s isn’t it?

No, EHCPs, including EOTAS at DS’s pace, can be until 25, or 26 in some circumstances.

Ah ok. Well he’s ok without either now, doing things with me and DH.
He’s a lot less stressed and in a routine - albeit not ideal with sleeping and waking times.

Currently, I can’t think of any therapeutic support that would be helpful instead of detrimental.