Advice re brain damaged adult

elsien

Can I suggest that as a starting point, your friend contacts the IMCA service. She needs to know though that the advocate is there to represent her son and his best interests, views and wishes, (which may turn out to be not be the same as her opinion.) It isn't unknown for people to say one thing to their families and something entirely different to the people working with them, so it's really important they have someone to be on their side amongst all the conflicting opinions.
Social services depts can be very short staffed and overworked, so unfortunately it does tend to be those who make most noise who get most out of the system. You could also consider asking for the social services complaints procedure if you want to stir things up a bit.

Has the person had a community care assessment recently - if they are considering a move to more independent living they really should have had a new assessment. This should take into account the views of others involved with the person if necessary, although it isn't unknown for social workers to only speak to the person themselves, even though they have little or no insight into their own conditon.

elsien

Can I suggest as well (and please don't take this the wrong way) that you try to avoid blanket statements about people having no understanding of anything at all, if you want the professionals to take you seriously.

"You cannot say that a person does or doesn't have the capacity to make decisions as a general statement."
These aren't my words, this is a summary of the legal position which says that capacity really does have to be assessed on a decision by decision basis.

If he is living in a supported living situation (BTW is it 24 hour staff, or staff calling in to offer support at peak times?) and looking to move into more independent living he clearly has skills and abilities that can be built on. What sort of input have the people who currently work with him on a day to day basis had in making this decision - they should have some idea of what he can /can't do, so I'm guessing social services will have been liasing with them, even if they haven't told you about it.

I'm not saying that he can make all his own decisions, or that he should be making this one- I obviously don't know the person to comment either way. But I do work with people with learning disabilities who need 24 hour support - they cannot be left on their own or leave the house unless someone is with them, but they have years of life experience and can make some surprisingly complex decisions.
All I'm saying is, you'll get further if you can show you understand the things that he can do, or which he could manage with support. Your very serious reservations about the plans that have been put in place will have much more credibility if you can give credit where it is due whilst still kicking shouting and screaming about the bits you don't agree with.
And you'll be harder to dismiss as just another hysterical relative who can't let their child grow up.

Your friend is lucky to have you helping her fight her corner - as I said before, those that don't know their rights and social services legal obligations do tend to be the forgotten ones who end up with very little.

Edit - who runs the shared house he is currently living in? Is it social services or a private or voluntary organisation. Either way, they also have legal responsibilities under the mental capacity act, and will also have their own organisation's complaints procedures which you could use in addition to the social services procedures. They have to give you a copy of the procedure in writing with the timescales for addressing any complaints if you ask for it.

You could also ask what risk assessments they have done to safeguard him in his new place, and what systems will be in place in case it all goes horribly pear shaped.

alison6692

There should also be a head injury specialist nurse at the hospital your friend can access.

Good Luck x

Loretta

I will pass all this on to her. It really doesn't sound as organised as this. She is particularly concerned not only that he is a danger to himself but to other people. He isn't a child he is 39. She is very aware of what he can and can't do and of all the extended family she is the one closest to him and always has been they have a special bond and always have done. He is bewildered and has no understanding as to what is happening and has told her, in his own way, of his fears and it seems odd that nothing has been discussed with her or any of the family and this is sprung on them with no discussion although ss know the family and particularly her are very involved and how much he relies on them, I know the thing now is for people to be independent, care in the community etc but there will always be people who cannot manage that

Strapped

You could also try the brain injury rehabilitation trust, or possibly Leonard Cheshire could point you in the right direction (my BIL is living in one of their supported homes, working toward returning to independent living and they have been fantastic).

elsien

Hi, me again.
I’ve been thinking a bit more about your posts. I don’t have family members who are disabled, so I know that I don’t have any real idea what it is like to live through your friend’s experience and to feel ignored and excluded. What I’m about to say comes from my experience of working with adults with disabilities. It applies to some people and not to others - it may or may not be relevant for your friends situation - that’s for her to decide. But I hope it helps to get things a bit clearer for her when she’s putting her arguments together.
And a lot of this applies whether the stepson has capacity to make the decision or not.

Firstly your friend needs to know exactly what support her stepson (SS from here on in) is getting now. If it is a shared house with support as opposed to a registered residential home that would imply that unless there are staff there all the time and staff sleeping in, then there are things that her SS is currently managing to do without help.
If it is a registered home (which sounds unlikely from your description) your friend can contact CQC ( Care Quality Commission) who oversee and inspect residential homes with her concerns.
So how much help does he get now, at what times of the day and night, and what does he use the help for - cooking, cleaning, paying bills, taking medication, shopping?
Her stepson is already living in the community and from your first post it seems to be working well for him, so in that respect it’s a bit late to say care in the community won’t work for him, because he’s already there, doing it, and getting on ok.

Second - you say your friend is worried that SS might be a risk to himself and others. Can she narrow that down a bit in her own mind and work out in more detail what she thinks the dangers are? (I’m not suggesting you answer that here, just to help her get her ideas clear for facing social services.) Is she worried that he might get his medication wrong, that he won’t cope with household things and might leave the gas on or electrocute himself, will he wander off and end up in front of a car, has his injury meant that he is unpredictable or aggressive in some situations? If he can be aggressive, are there specific things that set it off or does it seem to come out of nowhere? How do the people who support him now help him to keep safe and to be safe around others?
These are all valid concerns. What your friend needs to know is how all these dangers are being managed now in the place where he is currently living and how do they plan to manage them in the future? They must have risk assessments for him now ( they are the bane of our lives in this line of work) and they should do further risk assessments to be able to judge whether he can live more independently.
If he does want to live more independently, can he have the same level of support that he is getting now ( he might even need a bit more to help him cope with the change) and who will provide it? These might be things that the people working with him have already thought about, but because of the complete lack of communication with your friend she hasn’t been told. Or it might be that they haven’t thought things through properly and are pushing on regardless. Either way, she needs to know. If he is living in a shared house with support, someone is running it, and they have got the information.

Third - putting aside the lack of help your friend has had over the years, it does seem from what you have said that her SS is settled and has built a life where he is with a good local support network. So is she worried about him living more independently or about the poor locations away from his current support networks, or both? If her SS can make the choice to live in a flat, and social services put in place the same level of help that he is getting now but in a flat in a much more suitable location, with all the emergency back up systems in place, would this put her mind at rest or would she still be totally against it?

Fourth - and this is one of my general statements that may not apply, so feel free to ignore it. People act differently and show different abilities in different situations, and people with disabilities are no different. Your friends SS may be able to do things and be more capable in some situations than she realises, and she may also have important knowledge that staff supporting him are not aware of. Her SS may be being honest with her about his confusion and lack of understanding, or it may be something that he wants to do but doesn’t want to upset her if he knows she doesn’t agree. (This is quite common with the people I work with, and something us non-disabled folks can find hard as well.) Or it could be that she is right, and he doesn’t want to say no to his support staff. Which is why he needs an advocate, either way.

Does he have a GP, a psychologist, a psychiatrist, a community nurse who could give some impartial input. Who else attends the review meetings - has she got any old meeting minutes she could rummage out and track down some names to contact outside of social services?

Finally, whether your friends SS is able to make this decision or not, the lack of communication that has been going on is really bad practice and definitely needs questioning with all the different organisations involved. Saying she's only the stepmother is a cop-out and they shouldn't be allowed to get away with it. Ditto the involvement of brothers and sisters. Unless her stepson has said he doesn’t want his family involved, which sounds really unlikely given what you’ve said, but which does happen sometimes.

If I’ve phrased anything in a way you find difficult, I apologise: please bear in mind that I’m looking at this from an outside perspective and don’t have all the facts, but how I’m thinking is how the people working with the SS may also be thinking.
As they say, always handy to know your enemy.

[Deleted User]

Headway are excellent, they have helped me and mine a lot with epilepsy and brain surgery stuff.
Neurosupport are local to me but their web site has loads of links for regional and national organisations and support groups http://www.neurosupport.org.uk/.

I hope you get the advice & assistance you needed.

alm721

elsien wrote: »

Social services depts can be very short staffed and overworked, so unfortunately it does tend to be those who make most noise who get most out of the system.
This seems to be very true

Has the person had a community care assessment recently - if they are considering a move to more independent living they really should have had a new assessment. This should take into account the views of others involved with the person if necessary, although it isn't unknown for social workers to only speak to the person themselves, even though they have little or no insight into their own conditon.

This would have been my first question as well, a move to independant living must be based on a care assessment stating that that is the level of care needed. Has this been done and was it dicussed with the family. SS can't just decide hes capable of living indepdantly without having done severl assessments.