Change of accommodation due to increased support

[Belsmith]

My 30yr old son (learning disability/AS) has lived in a studio flat ran by a charity for approx 5 yrs, It is predominantly to prevent people from being on the streets, not specifically for people with learning disabilities. The staff are not there 24/7, or even every day during office hours. He gets 1 or 2 visits a week to check up on him. And he has a number to ring if there's a problem. I live 30 mins away. I organise his finances, take him shopping, clean his flat once a week, and ring him most days. He's always been very forgetful, and lacks motivation to eat/clean/shower, especially if he's having a bad day. About 5 years ago, I noticed he'd lost a lot of weight, and weighed him. He was 6ft and 9st. The DR prescribed protein shakes and anti depressants. But he struggled to take them. I managed to get him into a routine, but this last year, it's all fallen again. He was down to 8st. Again I managed to help him, but if I'm not constantly ringing him, he struggles again. And even a phone call doesn't always work. His housing support officers try to pop in, but he's very good at saying everything is fine, when it's not, so I don't blame them. I believe he's in the wrong place. I was so worried, I asked them to activate safeguarding, which they said they would. But so far we've heard nothing. I spoke to the local adult services and he was referred for an assessment. All they've come up with is Social Prescribing. I'm worried that, I can't do enough for him, and if I wasn't here, what would happen to him. Can anyone help? He doesn't have a social worker or anything.

[Buddyh]

I haven't an answer unfortunately but want to follow this post. I am in the process of trying to get my daughter into a rented Anchor extra care home flat but she hasn't even been accepted yet. Would his Dr refer him? He certaily needs a Council adult care assessment and this should open a few doors. Good luck. It's such a worry!!

[Belsmith in reply to Buddyh]

Thank you. He is due a disabled persons annual health check with his doctor, so I'm going to bring this up

[Everypasswordistaken in reply to Belsmith]

I agree. Get the GP involved as soon as possible. My son is similar. His BMI was 15.1 and the GP said he could collapse at any moment and that he referred people to anorexia clinics if they got down to 17. My son has autism and lives at home, and just doesn't feel hunger, but he is not anorexic. I suspect your son needs daily support to make sure he eats enough. We are trying to get son into independent living as we are getting older, but his weight is my biggest worry. Good luck

[Balamorym]

Go back to adult services, your son needs a social worker to access more support, eg longer daily visits. Check whether he is in the process of being allocated a worker. It can take time unfortunately. In my experience, you have to keep going back to them to explain why his current level of support is not enough. In my area there is a register of self employed carers that you can access privately, maybe you could find something like that to access support privately in the meantime. Perhaps carers could plan meals with him, take him shopping and cook and eat together. Good luck.

[DrSarahmac]

I’m in a very similar situation with my daughter in a flat that she rents and me looking after her finances and taking her to appointments and shopping etc. Her weight issues have been with gaining weight. She’s motivated to make changes but we all know how hard it is. We’ve also just started with the social prescribing. I’m hopeful it will help with the weight but it will prob also help just to get her out into a healthy environment. We also have my daughter round at least twice a week so I can make sure she’s getting a healthy meal.

Anyway your question is about support for when you’re not there. I don’t know about you or your son’s finances but we have a support worker who goes in twice a week for a couple of hours. She helps her clean the flat and encourages healthy changes re hygiene, hoarding, eating etc. Sometimes they do the shopping together too which gives me a break. If something were to happen to me this person could step up and maybe do more or engage social services. It gives me peace of mind and takes the pressure off.

I’d also consider setting up a trust fund to protect any future inheritance he might receive. All the best 👍

[Shedman1]

it sounds like you both need more support. I think you will need a social care assessment but going via the GP may be a good route in. I would certainly emphasise the risks regarding your son’s health and raise the safeguarding concern with the GP as this might help speed up the assessment. Good luck!

[Belsmith]

Thank you everyone. I'm definitely going to speak to his doctor and see what we can do

[LearningLot]

Did you have any input into the assessment?

[Belsmith in reply to LearningLot]

I had input to start, as I initiated this. But since then, the guy who I spoke to has contacted my son, as he has capacity. I'm frustrated as my son gave them permission to talk to me, and he is likely to not mention all his issues, as he doesn't see what we're all a family see

[LearningLot in reply to Belsmith]

Was the weight loss mentioned at all in the report?

[Belsmith in reply to LearningLot]

What report is that? I mentioned to the guy about my son's weight. But I've been left in the dark since then. As he has capacity, they don't seem to involve me

[Mog63]

Definitely he needs a social worker and more input. It sounds like he would really benefit from a shared living arrangement with other people his age and support workers coming in. Sharing with others may support him with remembering to eat as well.