Hi I’ve just joined for my special needs daughter (... - Mencap

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Hi I’ve just joined for my special needs daughter (20 year old)

Jfmj
Jfmj

I’m an older mum and beginning to feel the strain...I just don’t have the energy or patience anymore. So I’ve started the process of looking into alternative living arrangements for her. It’s a nightmare getting this sort of info in terms of finding actual places to visit to see if they'd be appropriate.... has anyone else out there been through this process lately? She will need 24/7 care and is nonverbal. We live in Northamptonshire.

13 Replies
oldestnewest

Hi. I’ve just noticed there is some information on this in ‘ask the expert’ section (carers week) It outlines your rights under the care act and how to look for good providers. There are a great many options now, even young people having their own tenancies with live in help. It sounds complex but is becoming a more common model, even for young people with high needs. I have had to look into this for my son who is also 20. We are hoping he can get a part buy part rent mortgage in the long run, with a specialist company called advantage uk, then he cannot be moved anywhere else in the future. I assume your daughter has a care act compliant care assessment?

Jfmj
Jfmj
in reply to DDay01

Many thanks, great - I’ll have a look at that. Yes she has an annual care assessment, but no allocated Social /transition worker anymore.

Sarah_Mencap
Sarah_MencapAdministrator

Hello Jfmj

Welcome and thanks for posting. This is quite a big change for you both and will take a bit of planning. A few ideas:

> contact your local council and see what they can do. They may not be able to offer any direct support, but they should have a good ideas of what the housing options are in your area.

> do you currently get any support? If your daughter has a social worker then they may also know what is available locally.

> if you would like to talk to someone about this please call our helpline on 0808 808 1111. They will be able to talk to you about exactly what your daughter needs. More information about our helpline is here - mencap.org.uk/advice-and-su...

There also some websites which list this sort of housing - but they are tricky to navigate. This is one that I found - carechoices.co.uk/lp/care-i...

I really hope that you manage to find something that suits your family. Please let us know how you get on.

Best wishes

Sarah

Jfmj
Jfmj
in reply to Sarah_Mencap

Many thanks Sarah, I’ll have a look through these. We don’t have a social/transition worker anymore, before she signed us off she said to get back in touch with Social Services when we wanted them to find a placement, I wanted to do some homework before being offered anywhere. My daughter is currently in her 2nd year at college and has been approved for a 3rd year. I’ll let keep in touch.

Best wishes

Jane

Hello there. My son is 21. We felt like this for a few years and decided to look into a residential college for my son. It’s been a long run but he is in an amazing setting since September, 38 weeks a year. Is she still in education? Does your daughter have a social worker? This would be/was my first point of call. I think many of us with older teenagers/young adults feel exactly the same. We too have to start looking for somewhere as the next two college years are going to fly by and we all know these things take time. To say though when we were going through our tribunal for college, our solicitor told us we did not legally Have to House our son (which sounds harsh but I knew what she was getting at). X.

Jfmj
Jfmj
in reply to BenjiB

Many thanks Benji, my daughter is in her 2nd year at college locally and has been approved for a 3rd year. We did look at residential colleges but felt that being nonverbal and unable to communicate this would be really hard for her, she has only ever been away from home for one or two nights respite at a time. Her communication (using an app on her iPad) has come on leaps and bounds in the last couple of years. We did look at a fantastic residential home for Special Needs in Lincolnshire-it would have been perfect for her but it’s such a long drive for us and her sisters (both live in London),although finding the right place for her is paramount, I would rather find something similar a bit closer to home. She doesn’t have a social/transitions worker anymore, they said to get in touch when we want them to find a placement for her, I want to know exactly what we want/she needs/what’s available before that.

It’s good to hear your son is happy at college. I understand (from our searches) that they will really help you with this process when he is due to leave. I wonder if they have/know of a list of special needs residential care homes etc nationwide? Best wishes Jane

BenjiB
BenjiB
in reply to Jfmj

Hi, yes we were in the same position. My son is non verbal and his understanding is very limited. Longest he’d been away from home was 4 nights in respite. I was worried sick to be honest that he wouldn’t cope. He’s surprised us all though. The first few days were difficult but after a week or so he seemed more settled. He does come home school holidays and he appears to know when these are. The first time he was home I was nervous when it was time to go back but again he shocked us! I did initially think he’d have weekends at home but he’s so busy there at weekends that it’s been fine. I do miss him buy life is easier. We are fortunate the college is only about 30 minutes away.

Hi we been at it for 9 months,very slow progress,but will keep at it,daughter 30,and we're finding it hard like you,keep at it. Mark

Thanks -so where did you start? I don’t even know what’s going to be appropriate for my daughter ie residential or supported housing ....do I just go round a few locally? I don’t know anyone else who has been through this. Jane

Hi there jfmj. This is a frequent query on this group, something we all have to face at some point. We reached this point about 4/5 years ago. First step is to talk to a social worker, who will discuss your daughter at their housing meetings. That's where we started, and also talking to other parents/groups like this to learn what's around locally. We finally settled our son into a shared house with two of his friends. Have a chat to the local care providers too, to see what they offer. It all takes time so best to get the ball rolling asap. Good luck, and let us know how you get on!

Jfmj
Jfmj
in reply to 1994EJED

Many thanks I did ask the Social worker (when we had one) she said not to contact them until we had an idea of where/ what we wanted. She gave me a list of some local places our council will fund but I’m struggling to find out what’s on offer elsewhere that might be more suitable.

Hi Jfmj

Two options that are a fair way from Northants but both fabulous. Treloar College in Alton, Hants offers residential and must be the 'gold standard' for high needs youngsters at college. Cream Care in Taunton and Torquay have several care homes which would be able to cater for your daughter (well they cater very well for my boy) and they are full of other youngsters.

Good luck!

Jack's Dad

Jfmj
Jfmj
in reply to JacksDad

Hi Jacks Dad - that’s really helpful I’ve had a look on line and will definitely go and have a look round Cream Care when things get back to normal. Many thanks Jane

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