Assisted living

[Jonesjanice]

My brother is 58 and has learning disabilities. He has always lived with my parents. My mum died in 2020 and he has continued to live with my dad, who is now 90. Obviously, some plans need to be made for my brother's housing moving forward. He has said he would not want to live on his own but would rather live in a house of multiple occupancy, where he would have other people to socialise with and give him company, plus the support would enable his independence. HOWEVER, social services have said he does not qualify for assisted living in a house of multiple occupancy as this would 'restrict his independence'.

I find this baffling - how can it restrict him. I think it would be the making of him. They would rather he had a house on his own with a support worker, which is NOT what he wants. How can they make this decision? They have never met him or spoken with him.

Has anyone else had this happen? I need to know if I can appeal, and what other options are open to me. Thank you

[49Twister]

Social Services rule the roost once you go down that path which we all have to at some point. It might be a good idea to read the Mental Capacity Act. I certainly had my eyes opened when my son went into supported living 10 years ago, he is 50 now and still not in his forever home. It will depend on what he is capable of, has he had an assessment? You get no favours just because your parents have supported him all this time, I found that out, I was 68 at the time my son moved. It also depends where you live in the UK. Definitely seem to do things better down South, it's dire here up North!!! Sorry to be so negative but unfortunately that's been my experience. Wishing you all the best.

[Jonesjanice in reply to 49Twister]

Thanks for your reply. He is on his 3rd social worker as they keep leaving and we have to keep restarting the process. He has had an assessment done and this was sent to a 'panel' who have never met him, but have made the decision that he doesn't need supported living, and should live in a flat....on his own....which we specifically said he did not want to do

[49Twister in reply to Jonesjanice]

I've just realised all decisions go to a panel regarding housing. They rely on the information given in the assessment done by the social worker. You must have received a copy of the assessment, do you agree with it.? You have to remember to answer the questions as if your brother is living on his own without the support of dad, as it's amazing the amount of stuff dad does without realising. As I said before it's worth reading up on the Mental Capacity Act, which I believe was reviewed in 2015. The Care Companies seem to treat everyone as having full capacity regardless of IQ or capabilities, even when they have had capacity tests to prove otherwise!!

[Picklebum]

hi my young person I used to care for lives in a shared hiuse she has autism it has git support in house 24/7 but live their own lives and support there seems to work well

I’d push for yr son also how can they know his needs and what he would like unless they meet hjm

[Jonesjanice in reply to Picklebum]

Exactly my point

[Runragged2000]

My first point of contact would be a local Carer's & Mencap group, there will be people in these groups in your location who have experienced this problem and can give you details of their experience in the area and can give you advice about what types of accomodation are available in the area. As everything is funded by social work it is very important that they get on board with your concerns for your brother. I would suggest that you request a Carer's assessment for your Dad and a Needs Assessment for your brother. How does your father feel about his son leaving home, being cared for by others and being left on his own? Do you have deputyship? I live in Scotland, I have been through this process twice, I have an 84 year old sister and 66 year old brother both with learning disabilities, both needed to live in cared for facilities. My Mum was still looking after my brother when she was 93 years old. In our LA it was vital that I had legal guardianship(deputyship in England) for my siblings as they would not deal with me without this. have you tried contacting housing and care providers to find out what types of accomodation and care they can offer?

[Jonesjanice in reply to Runragged2000]

HI - he has had a care assessment with social services which was submitted with the application for supported living. How can a 'panel' who have never met my brother assess his needs - it is beyond me. I have POA for my brother for both health and finance. My father is finding it too much and needs to move out himself, but can't do this until my brother is settled. This is the first step we have done, and naively, I thought it would be straightforward - how silly of me!

[Runragged2000 in reply to Jonesjanice]

Who carried out the care assessment? do you agree with the content? It took 3 years for the process of identifying my brother's needs and agreeing his budget for care during which time he was living with Mum. Mum's health needs changed and hospital refused to discharge her home, so she went into care at which point we were in fire fighting mode to get a home and care for my brother. I managed to get him into a respite care place with Enable, I was a director of the organisation at the time, it took another 15 months and much arguing before he got his current home and care package. I did a lot of homework to identify the correct home and care provider for my brother. Once I found the correct place I called every Friday morning at 10.00a.m. to speak to the Manager to find out if there was a vacancy. Once a vacancy became available I doorstepped our local Councillor and head of Social Work to canvas that my brother should be offered this vacancy. Lots of fighting and butting heads with people. My brother has now lived in his home, which is a 4 minute drive from me, for 11 years. The places that social work were offering my brother were totally inappropriate for him and the placement would have broken down. From my experience it's really vital that you do your homework about best care providers and what suitable are in the area and then drive the narrative with social work. As you have POA, I assume that your brother is capable of making his own decisions and choices, social work are denying him his human rights if they don't take these into consideration. Mencap may be a good source of support with information about legislation and rights. In Scotland we have a wonderful support team with Enable Scotland who give advice on how to identify resources, what the law says about your brother and your father's rights and will also advocate on behalf of the disabled person. Do Mencap have a similar team to help you?

[49Twister in reply to Jonesjanice]

Hi again, I too have POA for both but it seems to mean absolutely nothing. The house my son lived in let him waste money, didn't give a dam about his health, consequently he is now type 2 diabetic. He has Severe LD, ADHD, and it’s so obvious he can't look after himself. He will never be cared for like he was at home. Independent Supported Living is such a joke, these carers are so lazy. I made a formal complaint then learned it was passed to one of the managers of the Care Company who proceeded to lie and not accept any responsibility for anything complete waste of time and energy.x

[ljw1]

Hi, We have totally the opposite scenario with my son...he'd rather live on his own with support, but as he needs support 24/7 they won't allow it...he has to share as only needs background and cooking support when at home so has to share it. It seems to change depending what authority you live in. We've been let down majorly by our authority on a supported living property and now waiting for another that will hopefully go through but been waiting for this particular one for over 12 months! Hope you get it sorted, I really can't understand why they're not allowing this for your son...