How are they supposed to leave home and be independent?

[BathNotBath]

sorry very long for full picture.

DC is 25. ASD (also related anxiety, depression, OCD and CFS)
school was difficult (mild and polite way of saying it - it was horrific). Left with 1 GCSE. Followed by a many years at college and ended up with a degree.
On the surface appears independent and capable but is still autistic with all the related issues (anxiety, depression, good days, bad phases). Is capable but often needs reminding to do basic things like eating, eating a meal at an appropriate time, and not junk, brushing hair, wearing appropriate clothes, doing washing, ordering meds, that sort of thing. Can and will do it independently most of the time but not reliably and when in a bad phase needs coaxing.

Now works quite happily in a supermarket. Earns just over minimum wage. But really can’t work full time as needs time to recover. That ASD thing about masking and holding it all together followed by exhaustion.

rent in this area is high and when you add on basic bills it’s more than she can earn.
She is no bother but could really do with being more independent. And nearby so we can keep an eye, tell her to clean up, train her to live like an adult - god knows what would happen if I got run over by a bus. Everything takes more time to learn.

PIP clam has just been declined. Too disabled to live and work like an average adult but not disabled enough for any additional support.

Universal credit and housing benefit for a flat?
I don't know how that works but I know lots of people get it so worth a try .. isn't there a benefits calculator online you can try .

According to the calculator she’s not entitled to anything. Possible because she’s living at home. It suggests she apply for PIP.

Oh that's rubbish , I know people that don't work for not very serious reasons and have a house and full UC! Shocking how the system works !

You need to appeal the PIP decision, they almost always decline first time. Reapply, make sure on the form it’s really clear what she needs help with on a bad day, get supporting letters if you can.

Yes reapply. My sister got declined but got it on the appeal.

My ds2 is like this. I don't know what the answer is. It's so difficult to get PIP if you're not physically disabled.

Can you run the calculator again pretending she is renting a flat near by? Wouldn’t that tell you if she might be entitled to something if she moved out.

Will be appealing. Scored 0 for everything despite help from really useful social prescriber and all her history.
will redo the calculator too.

This is a big worry for my sons future too. Have you contacted the National Autistic Society for advice to try claim again.

Apparently only 22 % of autistic adults are in any kind of work and many of those are parttime And 75% are living with parents

I really dont think PIP and disability benefits 'get' autism

I know that some people o know ( families ove worked with) hot turned down for a pip because they filled the form in taking into account " good days" ie what a person can achieve if all the agents are lined up and everything else is going well. They were told by the fsw to assume every day was a bad day and write down the every day struggles a person was facing.
More often than not claims were passed.after an appeal.
I'm not saying anything is right or wrong, just offering up anecdotal observations.

Yes that’s PIP. Will be appealing.
redone the calculator thing with approx rent and in theory could get £17 UC. With helpful advice to work more hours and claim pip.
need to talk to a human really.

Can she rent a room as a lodger? This is what I did on and off for a few years until I had DS at 22. I'm also autistic.

Could you apply for social housing for her on the basis that she is autistic and on a low income? Rent would be cheaper for her then and I'm sure she would be entitled to some universal credit if not pip. As she has a stable home with you it might take a while for her to be offered a council flat but worth applying and going on the list. And maybe seek advice from citizens advice.

There's a thread on here in AMA you might find useful - from a disability assessor. I wouldn't give up at the first turn down. I'm doing an ECHP right now and have already had to appeal once. I don't think they even read what I sent tbh.

Is it worth looking into supported housing?

Will look at social housing yes.

can’t see her lodging with anyone else being successful, nor house share She’s not easy to live with.

www.mumsnet.com/talk/AMA/4711860-i-assess-disability-claims-ama

Thanks

Mencap were brilliant helping us with dd's universal credit appeal. They have free solicitors that work on your case.

Would she not be entitled to supported living, given that she needs emotional support?

Dd is in the same position, been to tribunal recently and been denied despite 3 hospital visits for mental health emergencies this past year. She's fortunate in having an exceptional talent that could pay well on 8 hours a week if she could market herself (music) and I'm trying to get her to apply herself to set up a website etc. Isnt eligible for uc as won't comply with rules and can't work in an environment that doesn't understand her.

Upside has an interview and an audition for a job with tied housing that would understand her (friend of a friend). If this doesn't work out we are going to approach social services for help, it's available and I'm not above begging because living with her is like being on egg shells

Absolute joke.

Sorry you were declined, do you have a citizens advice or similar to go to for the appeal? They do specific training for it, and usually very good at what they do. It’s their forte so to speak.

That would be my next step.

Have you spoken to your daughter about what she wants? Just wondering how much of a drive she has towards independence as that will affect my advice. I'm on the spectrum as well and live independently with a full time job but I always had a very strong drive towards this. If she's enthusiastic then I would work on getting her to be realistic about the parts of adult life she struggles with and to accept the need for robust planning in order for her to cope with those. If she's not willing to engage with that and be completely honest with herself and with you as her parents then it's going to be an uphill battle and I would suggest pressing the pause button until that changes.

It’s difficult. There is an absolute avalanche of MH issues in young people now, if they were all on benefits our workforce would be seriously depleted and our social security bill enormous. I don’t know what to suggest really, one of those things where there isn’t an answer. Like many these days 😕

I second the supported living suggestion - have you looked into something like Lifeways

lifeways.co.uk/blog/our-guide-to-supported-living-for-adults-living-with-autism

I doubt she’s autistic ‘enough’ for supported living at all. It’s on the list to look into though. I also seriously doubt she’d be up for it. She wants to be an independent adult - and mostly she could be. Just cannot afford to live alone.
it’s like a complete gap.