Moving out where do I begin?

[MFrancis71]

Hi my daughter is 33 and has SLD non verbal and some challenging behaviour. With a lot of guilt and regret I think she needs to leave home. I had her at 16 and she’s always been at home but I’m really struggling now and feel like I have to live my life now. I’m after advice on housing being a care home, shared lives or whatever is out there I’ve never explored this option so any advice appreciated x

[Jofisher]

Hi my sons 28 and lives in a care home and has done since he was 5 years old due to all his health needs. He used to come home holidays and weekends until I became to physically sick to care for him. You have clearly done everything you can for your daughter so you have nothing to approach yourself with but as Mum’s we can’t help ourselves can we !!!!!!!!. Ideally you need to speak to social services so they can assess your daughter as that will determine what her needs are then they can give you a list of homes or guide you to their book which contains all the homes suitable for your daughter. You can also then check out online the c.q.c. Website to check out their reports as to how good the home is etc etc. You also need to understand the funding side of things as well and they will help you with that at social services. My only advice is choose local and choose well. Speak to Mencap helpline as they may also be able to advise you as well and the carers association may be able to support you as you go through this process. I wish you luck and I hope you find a lovely placement for your daughter. In normal life remember she would have left home years ago so this is her next step think of it that way she will meet new friends and have new opportunities and you can visit and if local she can come home for visits etc. All the best Jo PS if you have any other questions please do ask many of us have gone through this situation and we understand how hard this all is for you.

[MFrancis71 in reply to Jofisher]

Hi jo Thankyou so much for your help yes I think I would like her nearby, that’s also a great way to look at it as a new phase of her life and an opportunity to meet new friends

You’ve made me feel more at ease x

[Jofisher in reply to MFrancis71]

I’m glad I’ve helped in some way and I’m sure your doing the right thing now for you both.

[Nomojo56]

Hi, yes agree with everything said above. Presumably your daughter has a Social Worker ? If not then phone Adult Social Care and get your daughter registered/ allocated. If she does already, then contact the SWkr, ask for assessment as Jofisher says above. You need that assessment of your daughter's needs and requirements to access appropriate accomodation. Our son is MLD with all sorts of physical and sensory difficulties. 26 now but he moved to his own place (shared 24 hr supported living) 5 years ago. It took 2 years to find his first place. It's generally not a swift process (unless there's a crisis) but on the other hand ultimately it's worth spending time and effort to find the right place for your daughter's place and yours. From our experience I'd advise you to visit all the places offered and get a feel for them - what does your heart, gut tell you. Also try and connect with parents locally in similar situation to yourself and ask around for recommendations of good settings - don't just take Social Worker's word for it. Son's first place wasn't ideal and after 18 months we set up our own project with two other parents and sourced/interviewed our own Care/Support provision from local Providers. Son now lives with two other men, one of who has SLD and is non verbal.

The other excellent point that Jo makes is to consider trying to find a setting that's fairly close to you. You've put your heart and soul into caring for your daughter for years and even though you're (by the sound of it) worn out now and need your own time, having your daughter near-ish may well make her moving out a bit easier on both of you. Our son is about 10 mins drive away. Has his own life but near enough if he needs us and we can pop in too for a cuppa and ensure everything's going smoothly.

Good luck with it all. A real life shift for both of you but a brave and necessary step x

[SpeedyH]

Hi there. The focus of your considerations must be your daughter and how she would choose to live her best life. Adult social care will take a holistic approach and look at the needs of the whole family but they will, quite rightly, focus primarily on where and how your daughter would choose to live her life. Unless you are a deputy from the Court of Protection, you have no legal weight in the decision of where she moves out to, though social care will take your views into account. It might be an idea to find out about advocate services in your local area so that someone independent can support your daughter in finding out what she wants and where. For example, she might especially enjoy going to a particular day service so it might be important to her to stay in the catchment area of that provision and other considerations like that. It might be important to her to live in a quiet environment, so a care environment catering for people with unpredictable, challenging behaviour might not be ideal and so on. She might love living at home with her family, and might not want to move out.You don’t say how much support you are currently getting to help you look after your daughter, but perhaps the first thing to look at with Social Care would be whether more and better designed support would enable her to carry on living in her own home, if she is happy there. My personal view is that it is not particularly useful to use the life that a non-disabled son/daughter would typically be living, as a yardstick to what a disabled offspring needs. This is why a person centred approach is vital and social care should be able to help you with this. 🌸

[MFrancis71 in reply to SpeedyH]

Hi atm my daughter has care this is just mon-fri no weekends or nights,carers come and take her cinema , carriage riding and swimming. She’s funded by nhs chc I am very choosy when it comes to carers as she doesn’t talk I have to be very careful and totally trust who looks after her. My ideal choice would be to have an annex or to have her close by and 24hr care but I’m sure most of you know it’s near impossible to get 24hr care. It feels like I’ve been pushed in to a corner and it’s let her go or shut up and get on with it.

[SpeedyH in reply to MFrancis71]

In theory, it is possible to get 24 hour care, especially if the costs are being shared with CHC funding. I expect you know this, but CHC funding, being healthcare money, has to be the most cost efficient solution. So, if a care home is cheaper than 24 hour supported living, then they will likely insist on that (although you can appeal). With social care funding, the emphasis has to be meeting the person’s assessed needs. If there are two solutions that exactly match the person’s needs they can insist on the cheaper solution but they can’t insist on something that isn’t quite the same match to the needs. It is possible for CHC and social care to share the funding and this often happens where there are distinct care and health needs. I think the key might be to get in touch with adult social care, say CHC fund part of her care package, and up until now you have provided the rest but are no longer able to so you require a full assessment of needs. There are a couple of financial things to keep in mind - if you are claiming Carers allowance, you won’t be able to if you no longer provide 37(?) hours carer week. Also, CHC care is free but adult social care isn’t and your daughter will lose all her income over about £120 (?) a week including any care component of PIP if she gets that. It is a minefield and I wish you all the best. x

[oddduckie]

Hi,

I work in a residential home for people with learning disabilities, and some use alternative means of communication, other than verbal.

I think the right environment will actually allow her to explore new interests and make new friends, and have support from staff trained to understand their needs. So rather than feel guilty, continue in the knowledge that a move could benefit both of you.

Also remember if they move, you are still very much part of their lives, you can visit and video call and go on holidays together.

It's not weakness to stand up and say you also need support. Its a strength.