Hi, I’m looking at Assisted Living for my LD son (28) and thoroughly overwhelmed with it all. I have contacted Social Services but am struggling to get the help and information I need. I am his carer. He has always lived with us. His father/my husband died 2 years ago and now it is more important than ever to see him settled into some kind of Independent/Assisted Living so that when I die he will already be safe and happy. At the moment the benefits he receives contribute towards our household bills. When he moves into Assisted Living will I lose my Carers Allowance? Will all his care be handed over to Social Services, as I am expecting and hoping that he will have a PA to help him get about rather than me taxiing him to and from where he’s living every day? I also have a Motability car as I currently drive him everywhere. Will I lose that despite the fact I will still expect to be driving him to visit family and friends around the country, take him on holidays, etc? As well as his finances I need to prepare for my own as the only income I have is a very small private pension and the Carers Allowance as I have some savings. This is causing me a lot of stress because despite wanting him to be independent I still want to be very much involved in his life and care. I keep being told that once he moves into Assisted Living I will need to get a job to support myself but being 59 with few skills and having been a carer for the last 28 years I’m not optimistic. Thank you if anyone can help me.
Assisted living: Hi, I’m looking at Assisted Living... - Mencap
Assisted living
Hi ,I totally understand where you are coming from we have been going through this for nearly a year now ,it has took us loads to find out via social services ,I actually had to go to my local carers support group which got a lovely lady to email them on my behalf as they did not seem to be listening to anything I was asking about.From one I got told we would lose the car ,some said you do not,anyway we went out and got a private car just incase.They are currently looking at supported living for my son who is coming up 26 years.it can take a while for what suits your sons needs,it goes a lot deeper depending if your son has got his own mental capacity or not.From what I gather if you still have your son 2 days or do I think 36 hours in between you still keep carers allowance ,good luck like I say we started this process nearly a year ago and still waiting to view a place etc seems like the just don’t care.He was in for his own flat which we seem to have been lied to about ,apprently it has to go to panel and the costings were too high which they don’t really tell you about ,I heard via someone else.Try to go to your local carers meetings if you have them I found them to be the most supportive in listening ,take care and start to look into it now.
Hi,
We’re in a similar position with 3 LD/autistic children still at home at 26,25 and 21..
If the LA , as I understand matters, provide SUPPORTED living they will apply for Court of Protection giving them ( either as deputies or with lasting power of attorney) control over his finances.
I’m unsure whether INDEPENDENT living would be the same.
Basically if your son goes back into LA care they will likely seek to legally take over all financial matters..
I would suggest taking legal advice from a family law specialist.
We are seeking COP on our own children thereby giving us and thereafter anyone we trust to have legal rights to act on our children’s behalf, and preventing the LA doing it.
Good luck..
Hi there
It is a tough situation, I feel for you... There will be a lot of us out there who had to start the journey from a similar place to where you're starting from.
There are a lot of questions, which is natural, and answers could come from a Mencap advisor, do will know what the buzzwords mean, and what "assisted/supported"living could mean... I find it varies from living totally alone with a 10 minute visit once a day, to virtually a care home with staff on hand to do stuff. If you find the website of a "good" or "outstanding" provider on cqc,
(I hope this works if you paste it)
cqc.org.uk/search/all?query...
... and research a bit, maybe visit local ones,
then you'll know more about good provision (don't settle for less!)
Social services will need to arrange for an assessment to decide what they're prepared to pay for, but they are massively underfunded, so you'll need to be persistent, very persistent usually, to get things rolling.
If the provision is good, you won't have to be a "taxi" etc!
In terms of your own money, I'm afraid I know nothing about that, but Mencap will.
An odd idea, but I know "parents of"who have gone to work in care homes! You're an expert, and many want staff
I'd agree with the other post about keeping any child's money under your control. You can be an "appointee" for benefits, which will probably mean you will happier about how it's spent than if someone else is in charge of it. "Cop"... Again, I'd ask Mencap about that later down the line, but you can challenge social services if they try a "cop" money takeover.
Wishing you well with this. Gather some info about what the "supported living" might be like with some local providers ( don't sign up in a hurry with pushy ones!) , and then you'll have some info on what you want. ( Social services tend to like it if some of the work is fine for them, and if you find a good place, you'll probably like it more than their choice!)
Keep posting... There will be more questions, and those of us who have been there will want to advise where we can.
Steve
Hi I agree it is a very overwhelming time when you are considering the next stage in your loved ones life in this case supported living. The guilt about making this decision and the worry that care will fall short of what us parents provide.We made the decision during covid that it was time to explore supported living for our daughter who has a severe learning disability and has 100% health funded. Along with the key worker in the continuing health care team, we began to explore the best option.
The key worker found us a 12 bed complex about 20 minutes drive from our home which was privately owned. The flats were still not ready as covid halted building work. Whe had a look round the site and had the opportunity to talk with staff from the owners other home just down the road and which had been up and running for about 4 years. This was 2021 and we had a year to prepare and began saving for furniture and everything she would need to kit out her flat.
She moved into her one bedroom flat which had a massive bedroom, massive bathroom and an open plan living area consisting of kitchen dining area and lounge, with patio doors opening out to communal garden in August 2022. It was a lovely high speck newbuild She was age 27. She was to have 24/7 support, 2:1 for 14 hours when out in community, and 1:1 the rest of the time.
To answer your questions firstly carers allowance. I have claimed it since she was about age 3 and although I have worked part time ( 13 hours a week), since my youngest was 4 and began school in 2005 it still meant I was below the threshold for earning and I was still providing at least 35 hours a week, I retained the carers allowance. Before she moved into her flat I got in touch whether I could still receive the allowance and I was told I would be able to as long as I provided at least 35 hours per week care/support. It didn't have to be in the home. As she comes to us almost every week for 3 nights I easily make the hours. Appointments, sorting out finances, cleaning after her stay, shopping also counts to the hours so I still do over 80 hours plus per week.
Regarding a car we have never had one as I am a non driver so we use my husbands car for getting her back & forth. I would have thought you could use the car to get back and forth but as I remember it can't be used solely for you. You could send it back and claim the mobility allowance which we do. I find it more cost effective, as petrol will still have to be paid for. Staff take her out in their own cars or use a taxi or bus pass. We are lucky as CHC also provide £100 per week extra funding to do this. The money goes towards staff fuel costs etc.
I would say do your research and fact finding beforehand
Good luck
Sounds like a good supported living place and service? Where is it based please?
This is in Leicestershire. It is a supported living facility mostly for residents with profound learning disability.It has taken a while as initially the management weren't the best but a change of management and more regular staff with no agency staff has made a big difference over the last 16 months.
It has helped making regular visits to the home to pick up our daughter and getting to know the staff.
This Christmas we felt able to give small presents to her small quota of staff for first time which was within the rules.
We have a good relationship with the overall manager who replies to our emails promptly.
Sounds very good for someone who needs support. Do they provide personal care?
Contact adult social care at the council and ask for a carer's assessment. During the assessment let them know you need support to gain employment. They should have a service for this, or be able to point you in the direction of support.
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