supported living: Hi,I was just wondering if anyone... - Mencap

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supported living

Tiger0606 profile image
7 Replies

Hi,I was just wondering if anyone knows how long it takes to go through social worker/services for a flat for one to one as that’s what my disabled son needs.I am finding the whole thing stressful as initially I did not want to do this but got refused any more respite.Which they asked me to go for supported living.I eventually agreed as he is 26 now ,non verbal,has a rare chromosome disorder.They are at the stage of arguing over the costs at moment ,this has been about 5 months already.Its very confusing ,stressful and upsetting.

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Tiger0606 profile image
Tiger0606
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AMPJAP profile image
AMPJAP

sorry but you have fight on your hands to get a flat for your son if he requires 24/7 care at one to one as the cost for this type of care package is massive approx £480 per day at £20 per hour that over £175000 per year I not sure the social service would approve that of course if you son requires that leave support then as I said you will fight hard an long . Go and research and find out what’s available in you area and outside your area that may be suitable for you son check out Mencap homes ask others parents in your area who have gone through this transition

My son has severe L Disabilities moved into a supported living house with three others with Downs and L/D they share carers 2/4 1/2 and overnight 1/4 and all get some time get 1/1 hours this house and staff won a national L/D award last year for supported living example all the boys go to day services on various days also .

My sons social services pay approx £4000 per month and he pay's contribution of £400 per month out of benefits and housing benefits pays his rent

I hope this helps a bit good luck

Tiger0606 profile image
Tiger0606 in reply toAMPJAP

Thanks so much for your reply ,it just seems to me they keep you in the dark and do not really say much.Do you have power of attorney for your son ?I have just always been his appointee but from what I have gathered it’s best to get the power of attorney.At present they have a flat a boy is moving out from but we just left wondering and waiting to see if my son qualifys,the manager is speaking to her boss to see how things can be cut down at present ,I am still going to have him home on a Sunday and a Monday night so that should help with the costs also.Guess we just have to wait and see what the social worker comes back with,we have viewed 2 other places with others sharing but my son is maybe a bit loud for to live there and unsettles the ones who already live there.Thanks so much for the information you have given.Also what happens with all the benefits are you still in charge of them and then pay them every month etc.I have been told he would keep his daycare also.Do you go to see your son whenever u want and do you have him staying overnights ?With it all being new to me and a massive change that’s why in think I would still have to have him home.I know it’s for the best as I won’t be around forever although it breaks my heart he does need to get settled and hopefully in future I will adapt to it more x

deborahcoxsuckle profile image
deborahcoxsuckle in reply toTiger0606

My oldest it took them and us 11 months to find suitable placement within a very good supported living house within the area and he's happy.. I'm very happy as well as he gets good support. I'm in my 70's so now in my golden years and all I ever wanted was for my oldest son to be happy... Which he is.. I have issues with my younger son who also is vulnerable and people more clever then him take advantage and he takes drugs as well.. He's always begging me for money and I give in... Which I hate. I don't let him in my bungalow and only speak to him at the back door.. At the min he's my biggest concern. The is no help from social services for someone with over a 80 IQ score and my second son really needs the help the most and he gets no help what so ever,

AMPJAP profile image
AMPJAP in reply toTiger0606

Hi couple of answers to you questions we are still the appointee’s for all of his benefits PiP and ESA we use to pay he’s shared house hold bills food electric gas broadband any furniture that becomes worn out broken washing machine dryer as the boys rent the house unfurnished they own a large SUV between them as it was pointless having three mobility cars and they share the costs of owning a car None of the parents have power of attorney as none of the men have mental capacity to apply for one if you son has not got capacity to apply then if you want full control the you would have to apply for guardianship via the Court of Protection not easy to do yourself usually apply via solicitors this more accountability more accurate accounts to be kept and submitted to the C.O,P every year to show where you have spent his benefits with receipts .???!,, Most of what you do for son is in his best interest and so should doctors and professional people do for son should be in his best interest !!! But sometimes this not the case but if you have COP guardianship it puts you in a stronger position

As for seeing our son we visit any time and he comes home when he likes usually every other weekend when he is not out at concerts, football shopping during the week bowling going for meals out allotments he is busy every day He helps to cook, clean to the best of his abilities at his house part of his 1/1 is cleaning and feeding animals at a farm he uses at iPad to FaceTime us although he cannot speak buying the IPAD was the best investment it records his daily activities in photos taken by his carers or himself

We have all had different problems since our sons and daughters where born and we continue to fight for there rights there is no book that has been written yet to give us parents enough knowledge to navigate the obstacles put in front of us the system keeps in the dark social workers and schools don’t pass on knowledge of what to expect for the future loook at the info we got at aged 1 to 5 pre school Then at special school 5 to 19 then at college then transitioning into adulthood parents don’t have clue what to do

sorry for the RANT but having spent the best part of 42 years trying to get the best for my son and others we at last got him settled in his home and we are happy as he is happy long may it last

I wish you and other parents the best of luck in finding a home that suits you sons and daughters Merry Christmas

1946timmy profile image
1946timmy

My 47 year old Autistic/Epileptic son moved into supported living house with 2 others in May. He has 1-1 24/7 the two others have some 1-1 each but also shared. It took over a year to get it all agreed. SS in our area were trying to reduce the hours support and it went back and forth with the panel. I’m sorry to say unless you’re very lucky it will be a struggle to get the support you think your son needs, it is all about finance.!!! Good luck .

Tiger0606 profile image
Tiger0606

yeah ,thanks for all the reply’s,just found out the other day our social worker has maybe left,so our case is passed onto someone new.Totally agree what you saying as they were trying to say he didn’t need any support over night and try to use sensors or alarms if he woke etc.Hows it going ?has your son settled in and adapted ok?have a feeling we are going to be like you with going to panel and them refusing and trying to make cuts where they can.take care many thanks.

my oldest son I think should need a waking night staff but their is no funding for this. He wonders at night, they have alarms on the doors. I also think the staff can be lazy and they've put him in pads. When he lived with me he had few continence problems. We kept to a toileting schedule now he is in pads, when he stays with me it's hard to change him with my bad hands. The supported living manger said he has continence problems which could be true because he's older now. He lives with 2 other people in the home and they are settled and he is settled. The home feels like a home and their are some good staff there.

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