Does anyone know where could help please?

[Clementineorsatsuma]

Name changed as a little bit outing.
I am 60, have adult DCs, 3 of whom are living with partner/ married, DD 26 still with me. Divorced from elder 3s dad, youngest's dad was also divorced from (dv, alcoholic) and he then died. No family other than my children.
DD 26 has severe anxiety, depression, and in the last 2 years has been diagnosed with ADHD and PTSD. She is also under investigation for ME/ FMS, as she is permanently exhausted.
She gets Universal Credit and the DWP deemed her unfit for work so she is in the group that does not have to job search etc.
All the care she gets is from me. I love her dearly and happily look after her as well as working full time to pay for our accommodation etc. She also pays towards this.
My question is, are there any organisations that could give her support that isn't Mum doing it? That she could get advice from re housing, supported living, etc? She would like to be able to work one day but that's a long way off yet. I just feel that she would be more in control of her own future if there were organisations she could turn to?
Thanks in advance!

Hi @Clementineorsatsuma,

Firstly, you sound like a lovely, supportive Mum. Don't underestimate how important that in itself is to your DD. Feeling someone has her back, no matter what, is so vital whilst she's battling so much.

And, boy, she clearly is. Really tough combination of conditions. Poor woman.

Secondly, please make sure YOU have support as well. In whatever form that's most helpful. You, too, are also juggling an awful lot, both practically and especially the strain of seeing your DD suffer. You matter just as much.
https://www.carersuk.org/help-and-advice/helpline-and-other-support/

I've found Mind's helpline a good starting place for complex issues which include MH in the mix.

Sort of a one-stop-shop who can signpost accordingly, and also provide a listening ear from someone who 'gets' it.
https://www.mind.org.uk/information-support/helplines/

No matter whether that's you speaking to them first, or your DD, for fact-finding about small steps towards future supported living options etc.

Peer support may also be reassuring to her. Until she'd feel up to 'in person' meet-ups, Mind run an online community, Side By Side, where she'd be able to talk/get support/relate to others in similar situations.
Her own space to offload.
https://sidebyside.mind.org.uk/

Can be a mine of useful info from others, some who've moved a little further along the journey to more independence so very encouraging, in my experience.

I can relate to some of what she's undergoing, esp physical ill health preventing me having as much independent agency with my own mental health etc., so know the challenges well.

I wish you both the very best.

Hi@CarrieAndJimiToo

Thank you so much for your kind words and supportive advice. It really means so much as I sometimes feel that I am failing her and it is devastating.
I will look into Mind as this does sound what she needs- I knew of them but had no idea what they do and didn't relate them to my daughter's needs.
I do wish you well for the future- you have clearly been through a lot and you come across as very caring and intelligent person.
Thank you again.

Mind are a good organisation who may be able to help her. Or may not. Depends exactly what help she needs. IME they're more set up for people with less serious MH issues and aren't set up to help much with people who are involved with secondary MH services ie the very ill people. What help you can get will depend on what the branch in your area offers. The information webpages and phone lines are national I believe, not local.

Supported living is something accessed by social services. Care of any description is provided by SS based on unmet needs. If you're currently meeting all her needs you'll get no help. She does have a right to live independently and also you have a right to choose to not be her carer or to limit the care you provide (whether she lives at home or elsewhere). She can (or should, good luck with making it happen) get a social care assessment by SS which looks at her needs and which ones are currently unmet that they legally have to meet (which they'll try anything to wriggle out of). To get supported living she'd have to be assessed as needing it. I'd say this is unlikely unless she's severely disabled. It's expensive to provide residential care so SS prefer to "care" for people whilst they live in the community if at all possible.

The local council can help her access social housing, eventually, after a very long wait of possibly decades, since she's currently adequately housed. It really does depend on area, some areas there's less of a wait.

If you made her homeless, which you have a right to do, she'd be a higher priority but would go into temporary accommodation first and this could also last for years. Some temporary accommodation is unpleasant and could feel/be unsafe. It could also be unsuitable for her but that will be tough, there's zero choice when it comes to temporary accommodation, if you turn down what's offered they have no further duty to help you. Without you there to care fo her 24/7 she may need carers, which you'll have a fight on your hands to get SS to provide. Whatever help she gets will most probably be inadequate and be focused more on keeping her alive than any quality of life.

As you've posted this under the MH topic, I'm guessing it's a MH social worker you need, so a referral from GP to secondary MH services. I don't know if there's other ways to access this help. Duty social worker perhaps, but that may only be for emergencies I'm not sure. Some GP surgeries have their own non-specific social worker attached too.

Sorry to be negative but I don't want to give you false hope. You can't just choose to go into supported living and go on a waiting list, it's not that simple. Same way that old people can't choose to go live in a care home, unless they're going to pay for it themselves which is usually prohibitively expensive. Hopefully you now know where to start, if you want to move towards this. As you become old and frail it may become more of an urgent necessity anyway, unless DD recovers sufficiently to not need that level of care and support. I feel for you (and DD) it's a difficult position to be in.

Hi @EasterEggBunny

Many thanks for your candour.
I rather thought that as she is safe and housed with me then that would mean there is no support for anything else.
It means that I will work till o die to provide a home for us, and I worry what will happen when that time comes.
She has no life. No friends. She volunteered last year for 4 hrs a week in a charity shop but it became too much for her.
We have battled the Drs at every turn. Even down to asthma inhalers, it's been a battle.
I struggle to find the fight sometimes. When she was younger and her diagnoses were anxiety and depression I used to focus on her getting well.
She will never get well. But I would love to see her happier and more fulfilled. It just seems impossible atm.

I know 💐. It's awful. If it's socialising she's after there may be day care centres running organised or drop-in social groups in your area. Mind sometimes have groups focused on learning about various MH conditions or social groups for various activities, you'll have to contact your local branch. There may be a waiting list and any help they offer may be time-limited not ongoing. There may be a charge. If you check the notice board in your GP surgery there may be local support groups advertised based on her health conditions (these may be quite toxic just full of people moaning constantly about how everything sucks, which might not be her thing, I always think an environment that focuses on the positive is more helpful), usually run by volunteers and people can just show up and see if they enjoy it.

Sorry if none of this is helpful, I realize it depends on her being able to socialize at all and on being suited to a group environment. It's not the same as going out with um, healthy folks. On the plus side other ill people will be more likely to understand and be accommodating of whatever she's going through and her limitations, on the downside things can get a little difficult with unwell people leaning on other unwell people for support when those people can barely cope with their own problems never mind someone else's.

I agree with the the other poster too, it's important to get help for yourself not just DD. Also to be involved with people on the same journey, in case you come across an opportunity, organisation or activity that could be helpful.

There's no magic solutions, only seeking out and gathering up all the scraps of help that you can. As her carer it'll be important to realise when to say no, no more. Because doing so maintains your ability to oversee things, fight the battles and be a friendly caring presence in DD life. Weighing up the consequences of shorter term suffering against the longer term consequences of you not being around at all. Working yourself into an early grave helps no-one.

Thank you both so much for your detailed and caring replies. You really are the best 💐

Has she applied for PIP ( Personal Independence Payment) if her condition is so debilitating ? If she did find her own accommodation one day then being in receipt of PIP would mean she would get more help from UC towards rent as she would qualify for the one bedroom rate rather than shared accommodation rate.

I also doubt you will work until you die. If you are in rented accommodation and only have your state pension to live off and little in the way of savings then you would get help from housing benefit as many pensioners do and if your daughter is not working then her benefits are unlikely to affect your entitlement.

We are looking at doing this once her current referral for ME/ FMS has been sorted. I hadn't realised it would affect things if she was able to live independently- thank you for this.

The house we are in is 'too big' under the HB rules, so we would only get £475 pcm against a rent of £900. You cannot rent a 2 bed for £475 where I live, but that is still what HB will pay.
If she is living independently when I retire, then that would definitely work. Thank you.

Yes at the moment living with you I don't think she'll be getting any housing benefit. Sounds like you're getting the HB for a 2 bed but living in a 3 bed.

Or maybe she's too old to be considered a dependent and you're only getting the 1 bed rate? And she's currently getting the shared accommodation rate?

If nobody is currently getting any HB for DD then get her a lodger agreement for your home ie you're renting a room to her, it's nothing to do with your landlord, look online for a template document. Then she can claim HB costs in her UC, make the rent whatever the maximum shared accommodation rate is.

If she moved out you'll both get the 1 bed rate once she's over 35 or claiming PIP.

As you're in private rental get yourself on the social housing register too. Even if it takes 20 years for you to get a place. The rents don't exceed the full HB rate. Unless your property is bigger than you're assessed as needing, so you'd get a 1 bed rate as a single person even if you lived in a 2 bed, but even then the extra you'd have to pay would be around £50/pcm. If all you're going to have is a state pension you need social housing.

Get DD on the register too. Even if she's not going to bid for anything yet (don't mention this). One of the factors in allocation is time waiting. The sooner she's on the register the better.

What do you want to do, live separately or together? If there's a shortage of 1 bed property in your area, you might have better luck securing a 2 bed and you'd have higher priority for that if both bedrooms were going to be occupied. If it doesn't work out and DD subsequently gets a place of her own, all that changes is her HB would no longer cover half your rent and you'd drop to the 1 bed rate needing to pay the extra yourself or look to downsize.

Once you've applied to the housing register it's not set in stone. If circumstances change, eg evicted from current house or you develop medical conditions, you update your application and they recalculate your entitlement to a property and your priority status.

Claim PIP now, it goes on inability to do things not her diagnosis, although diagnosis helps.

It means that I will work till o die to provide a home for us, and I worry what will happen when that time comes.

I never specifically addressed this. It's why I suggested you consider making her homeless now. So she goes through it with your support, not after having been evicted by bailiffs due to non payment of rent whilst grieving her mother's death

Look into claiming PIP for her and also see if you can get assigned a social worker. I didn't think I would get any help for my eldest son, but I self referred online to social services and told them I was at breakdown point. In the space of six months, my son has been assigned a social worker and been assessed for assisted accommodation with carer support. I've been stunned how quick it's all been.
I understand you might not be feeling at breakdown point as her carer, but your daughter sounds like she's there, so push with that fact. Even if you're just on a list, at least you are on the list.
You also need support, it is very draining caring for a loved one and feeling helpless to help them.

I think you should get the PIP applied for now, with her other diagnosis. Get started and in the system, you then just update PIP with all the extra information as and when you get any updates on the ME/FMS.

@EasterEggBunny I don't get any HB as I earn too much - thank you anyway.
I want her to feel she has a future- a life to look forward to. I am on the housing register with her but I think you're right about her being on it independently, thank you.
We will start the claim for PIP too, thank you.
I could not make her homeless. I can understand your points but it would shatter anything she had left that resembles security/ comfort. She could not cope with that.

Thank you all- I am much calmer than I was earlier this week. I feel I have avenues to explore for her, and me. I have also made a Drs appt for myself.

I totally understand. Getting social housing is a nightmare whatever route you take.

You can get a carer's assessment from social services for yourself too. It looks at what you need in order to be able to keep caring for DD. This is separate to looking at her needs.

Wanting a future etc to look forward to is important. Disabled people aren't supposed to be second class citizens who don't matter. I hope you can get somewhere with making improvements for you both.

Oh and the housing benefit, do a lodgers agreement for DD then or have her on the tenancy agreement or something. As long as she has the paperwork to show she's liable for rent costs then she can claim housing benefit. I don't think it matters that you're related, you're both adults and it's not a romantic relationship so count as separate households for benefits reasons. If she was a child you'd be expected to house her but I see she's 26. You accept her HB payment towards the rent then it frees up more of your wages to eg treat her to some activity to benefit her wellbeing. See if there's any charity offering a befriending service too, I didn't think of that before. They just come chat weekly over a cuppa, I think.

She would only be able to claim half the rent if it was a joint tenancy.