"Give older people legal right to stay in their own homes"

[Sirena]

https://www.theguardian.com/society...-right-to-stay-own-home-law-winterbourne-view

I find some of this very unsettling - "A person would be assumed to want to live in the community unless he or she indicated otherwise"

Which is something a PWD is very unlikely to do. In the meantime, who would be caring for the person in their own home? Do we really need the move to a care home made even harder?

 

[canary]

 

[Bunpoots]

Sums it up...and made me laugh!

 

[Jale]

 

[Moggymad]

Where will all these support workers come from that will be needed to work in the community? I try to help an older lady with a learning disability whom we have known for a long time. She has a support worker 5 days a week for about 3 hours a day. After that she is on her own dealing with her health issues & getting herself in an anxious state. The result is she is a prolific caller to 999. As in this case I think our already overstretched emergency services will get the fallout.

 

[Lawson58]

Who wants to go into a home? No one I think of.

Economically it is cheaper to keep someone at home than have them admitted to care so obviously there is an agenda there. Many people do well in care homes, some don't. Apart from the practicalities of keeping a person at home - staff, equipment, provision of medical (not just nursing) care, where does that leave the carer, the family that has to, and inevitably will take up the slack when the system fails.

Plans like these also assume that carers and families will have the will and the stamina to do this for years (how many?) and ignore the huge commitment that this places upon people. It disregards the needs of families and forgets that dementia impacts many more people than the just the person with dementia.

 

[Jaded'n'faded]

Also not considered is the big problem of loneliness and isolation in the elderly. Forcing people to stay in their homes is hardly going to help.

 

[Helly68]

I agree with the above, but the article is annoyingly vague about the needs of different people - people with disabilities, autism etc the needs and the issues, in my view, aren't the same. Also lazy journalism as we know there is no "community provision" to help people stay at home, however desirable that might be, for some people.
Written by someone without first hand experience perhaps.....

 

[Louise7]

I agree. When you look beyond the content of the article I don't think it's anything to worry unduly about in relation to those with dementia. The article mentions that the EHRC is saying that all relevant public bodies should comply with article 19 of the UN convention on rights for those with disabilities.

This particular convention isn't new - it's been in place since 2006 - and it makes no reference to "A person would be assumed to want to live in the community unless he or she indicated otherwise": On the contrary, it specifically refers to those with disabilities 'who are capable of claiming those rights and making decisions for their lives based on their free and informed consent'.

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

Article 19 – Living independently and being included in the community

Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

I can't see how implementing this convention would make any difference to dementia care. Those who have mental capacity already have the ability to decide if they want to stay at home or go into a care home. Those that lack capacity have the decision made for them, in their best interests.

Plus, as has already been pointed out, unless part b) of the convention – the provision of services/support to enable those with disabilities to live in the community - is met then the opportunity to choose where they live is going to be limited.

 

[Sirena]

I was thinking the same @Louise. The article seems to be conflating a lot of different disabilities which have differing requirements. The sticking point with dementia is always 'capacity'.

I would have thought the emphasis should be on improving the quality of care homes. Those of us with PWDs know SS aim to keep them at home until the last possible point anyway, so staying in the community isn't really an issue.

 

[Baker17]

I agree. When you look beyond the content of the article I don't think it's anything to worry unduly about in relation to those with dementia. The article mentions that the EHRC is saying that all relevant public bodies should comply with article 19 of the UN convention on rights for those with disabilities.

This particular convention isn't new - it's been in place since 2006 - and it makes no reference to "A person would be assumed to want to live in the community unless he or she indicated otherwise": On the contrary, it specifically refers to those with disabilities 'who are capable of claiming those rights and making decisions for their lives based on their free and informed consent'.

The Convention follows decades of work by the United Nations to change attitudes and approaches to persons with disabilities. It takes to a new height the movement from viewing persons with disabilities as “objects” of charity, medical treatment and social protection towards viewing persons with disabilities as “subjects” with rights, who are capable of claiming those rights and making decisions for their lives based on their free and informed consent as well as being active members of society.

Article 19 – Living independently and being included in the community

Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

I can't see how implementing this convention would make any difference to dementia care. Those who have mental capacity already have the ability to decide if they want to stay at home or go into a care home. Those that lack capacity have the decision made for them, in their best interests.

Plus, as has already been pointed out, unless part b) of the convention – the provision of services/support to enable those with disabilities to live in the community - is met then the opportunity to choose where they live is going to be limited.

I have not found this in my experience, my OH does not have capacity but his advocate asked my OH did he want to live in xxxx and of course he said yes because that’s where he’d always lived.Where he was living was an excellent home half an hours drive away from xxxx, a place we often visited so he was familiar with it. Because he said he wanted to live in xxxx the judge in the family court said he could choose where he wanted to live because it was his human right even though he didn’t have capacity. This led to him being moved to a terrible place in xxxx who now want him out because they say they can’t cope with him.The SW won’t let him go back to the original place even when the manager has arranged for him to have his old room back but she is moving him to another different place. I’m dreading another move as he was very distraught and confused and I have to go everyday to calm him. It’s been two years of hell for my husband and me and it’s not over yet as the new place doesn’t have enough staff and can’t say when they will be able to take him and I’m just so worried about his state of mind when they move him again.

 

[witts1973]

I was amazed at the amount of people at home alone after my mums carers told me that's how a lot of them live in hospital beds with just 4 care calls a day,I'm so pleased that I live with my mum to give her the best nutrition and drinks all day long

 

[Shedrech]

hi @Baker17
an aside really
might Admiral Nurses be of help - they have supported a friend in my local area
https://www.dementiauk.org/get-support/admiral-nursing/

 

[Baker17]

hi @Baker17
an aside really
might Admiral Nurses be of help - they have supported a friend in my local area
https://www.dementiauk.org/get-support/admiral-nursing/

Thanks for the link unfortunately none in my area

 

[Sirena]

I was amazed at the amount of people at home alone after my mums carers told me that's how a lot of them live in hospital beds with just 4 care calls a day,I'm so pleased that I live with my mum to give her the best nutrition and drinks all day long

So sad isn't it. I suspect even if they wanted to move to a care home, it wouldn't be offered until there was a crisis.

 

[Lawson58]

I was thinking the same @Louise. The article seems to be conflating a lot of different disabilities which have differing requirements. The sticking point with dementia is always 'capacity'.

I would have thought the emphasis should be on improving the quality of care homes. Those of us with PWDs know SS aim to keep them at home until the last possible point anyway, so staying in the community isn't really an issue.

And the question of capacity is one red hot potato. I know there are people on TP who say that if 'capacity' is demonstrated for just a few moments then it is enough but I have to disagree with that one as it doesn't sound quite ethical to me.

My husband can do lots for himself and certainly is not a candidate for a care home. Yet!! He can make a lot of decisions for himself but he is totally incapable of managing financial matters or just keeping the household running. So whilst he knows what he wants and and what he will or won't do, I couldn't say that he is capable of implementing those ideas on his own. I honestly couldn't challenge his capacity but I have to question his ability.

It seems to me that the line between the two is a very blurry one and so the issue of capacity will still be a sticking point.

 

[witts1973]

And the question of capacity is one red hot potato. I know there are people on TP who say that if 'capacity' is demonstrated for just a few moments then it is enough but I have to disagree with that one as it doesn't sound quite ethical to me.

My husband can do lots for himself and certainly is not a candidate for a care home. Yet!! He can make a lot of decisions for himself but he is totally incapable of managing financial matters or just keeping the household running. So whilst he knows what he wants and and what he will or won't do, I couldn't say that he is capable of implementing those ideas on his own. I honestly couldn't challenge his capacity but I have to question his ability.

It seems to me that the line between the two is a very blurry one and so the issue of capacity will still be a sticking point.

Yes that seems to be manipulated for good and bad reasons sometimes in my opinion

 

[Sirena]

I suppose you can say people retain a capacity to do certain things, but not others. My mother lost her ability to deal with her finances quite early. At the time she was still living on her own and (seemingly) coping okay, but could not join the dots and move money around or understand what bills needed to be paid - she either posted them to me (at my old address, because she could never remember that I'd moved) or hid them. When she moved to a CH I found 3 years worth of threat letters from HMRC.

What makes things so difficult is that a SW can have a conversation where the PWD seems to grasp the issues and be making a lucid decision, but actually they are completely divorced from reality. There is a more than one member on here who have had SS telling them that their PWD has capacity and is making a 'lifestyle decision' to live at home in filth and disorder with no food in the fridge, and they cannot intervene.

 

[Jaded'n'faded]

My mother has enough capacity to decide whether to have toast or a banana (about all she eats these days.) That is real capacity 'in the moment' because it relates to something immediate/visible/tangible. If you asked if she realised the detrimental long term effect that eating just these 2 foodstuffs would have on her health, she wouldn't have a clue what you were talking about. If you asked her to name 3 other foods she would struggle and would probably forget the question before she could answer.

Asking people with dementia about big things with consequences like where they should live, is, for many, ridiculous and pointless, and social workers should not be allowed to judge capacity from an answer to such a question, unless... the person is also able to say where they live and would actually recognise the place (and be reassured that they are home, not equally confused as to where they are), they are aware enough of what they can and can't do to enable suitable help to be put into place.

As far as I am concerned, saying, 'I want to go home,' without any understanding of the implications of that, is not enough to determine that person has capacity.

Call me an old cynic, but as the usual choice of SS is to keep people at home as long as possible because it is cheaper, it really suits their purposes to use the 'I want to go home' ploy to justify their actions. Has any person with dementia ever said, 'Don't make me go home - I want to live in a care home so I'll be safe and looked after!' ? No, never.

 

[Lawson58]

I suppose you can say people retain a capacity to do certain things, but not others. My mother lost her ability to deal with her finances quite early. At the time she was still living on her own and (seemingly) coping okay, but could not join the dots and move money around or understand what bills needed to be paid - she either posted them to me (at my old address, because she could never remember that I'd moved) or hid them. When she moved to a CH I found 3 years worth of threat letters from HMRC.

What makes things so difficult is that a SW can have a conversation where the PWD seems to grasp the issues and be making a lucid decision, but actually they are completely divorced from reality. There is a more than one member on here who have had SS telling them that their PWD has capacity and is making a 'lifestyle decision' to live at home in filth and disorder with no food in the fridge, and they cannot intervene.

I know that's the case for a lot of people with dementia and fortunately I haven't had to deal with social workers on an ongoing basis. You have to wonder in this day and age why SWs aren't better informed about PWD which of course goes back to the original topic of this thread - giving older people the right to stay in their own homes.

We have been getting a little home help for a number of years since OH had his cardiac arrest so he is used to having someone coming in. He has always been lousy about housework so nothing new on that score but he still does some easy cooking. He plays bridge several times a week and Skypes his family in the UK so he is still functioning at a high level in a limited sort of way. He cannot drive or use a mobile, he gets confused if he has to follow directions, has huge long term memory issues and on it goes.

He is quite aware of the real world and often he gets anxious about how he would cope with finances if I died so for him it really is a question of gaps in his abilities. I know he is not like most PWD which confirms how difficult it would be to cater for an individual's needs in order for them to remain at home.

Apart from the practicalities of keeping people at home, who decides capacity and how do people make a fair and reasonable assessment of a PWD.