Social worker refusing urgent care assessment - UPDATE - advice please

nightsong

The woman from the advocacy service has just rung me and my son's assessment is tomorrow morning.

:eek:

We are in shock as you can imagine! Three cheers for the advocacy service :j

Please does anyone have any advice on what to expect/what to say? I understand it will take about two hours so obviously pretty thorough.

Are there any published criteria (he lives in Gloucestershire). I have a document called "Eligibility for services - Fair Access to Care Services". I think he is at least in the substantial needs category and there is a very good case for critical as I understand it. But is there anything more detailed I could look at?

Thanks

SandraScarlett

Well I'm very pleased that you are getting this, and so quickly too. Might I suggest you prepare a report for yourself, with bullet points of prompt words, giving all the concerns that you've raised on here - and any that you haven't?

I've always found that when people are asked questions, they are so eager to say everything they want to, that they don't always make the salient points clear.

So take your time, prepare what you can to remind you, and hopefully some of the good folk on here will send you some links.

Good Luck! :beer:

xx

SandraScarlett

Is this the one you've read?

http://www.gloucestershire.gov.uk/extra/article/109195/Eligibility-for-Services-Fair-Access-to-Care-Services

It's just I saw the words "extra article".

xx

elsien

In our area they have a list of criteria to work through to cover all aspects of daily life.
Off the top of my head because I don't have a form to hand - practical help with personal care, dressing, with shopping, cleaning, food preparation, laundry, the whole works.
Communication needs, how he manages now and what he needs support with.
Help needed during the day and at night. Whether the support he needs is practical hands on stuff, or whether he just needs verbal prompts and encouragement.
Health needs, medication, appointments and how these are met.
Support needed to get out and about eg can he/will he travel independently, what does he do with his time - any day centres attended, are his social needs being met. Choice of activities/employment. They may go through his week day by day to get more of a picture of what he does and when.
Can he manage money, the support needed to manage bills and benefits and uphold a tenancy.
Pyschological and emotional support - (that's where you'd throw in about the risk of becoming socially isolated etc, risking his tenancy etc.) Any behavioural difficulties he needs support with. The help given by family/circles of support, where you can tell them that you are no longer able to help due to your own health problems. Any areas of vulnerability - is he at risk of being targetted by people aiming to take advantage?

(NB my experience is with assessments for people with learning disabilities, so some of the above might not apply for you, but I thought it might give you some pointers.)

I think I said before, it can be difficult for the person with the disability to hear what sounds like a long list of things they can't do when they've struggled for so long to be independent, and he should also say what the positives are and what he does do for himself, to give more of a balanced picture.
Just be ready to give an honest assessment of his needs and what you have had to do for him and the consequences when you haven't been able to. And prepare your son for it as well, as if he tries to pretend everything in the garden is rosy, in the current economic climate he may struggle to get what he needs.

Edit - they will probably also look at housing need, aids and adaptations, both those he already has and those that he needs putting in place. Which is where you could have the conversation about bathrooms and personal care, and whether he needs to have alternative accommodation.
Hope it goes well for you both.

nightsong

Many thanks SandraScarlett and elsien.

Sandra, yes that's the one I've got.

Writing it down with bullet points is a very good idea and I will make sure I've covered all the areas elsien suggests.

I am a bit concerned that DS will insist things are ok when they really are not - he has limited insight in some areas. Hopefully I can get that across.

We have already found a residential care home for him that looks as if it suits his needs - we have visited and liked it, they seem to think he would be appropriately placed there, and are doing their own assessment on Thursday (it's all go, I'm pleased to say!). Also we have a letter from the GP supporting this placement.

To what extent should I talk about/push this? Should I make it clear we already have pretty firm ideas about what DS needs, or be more softly softly than this?

elsien

You can certainly mention it as a possibility and in your place I probably would, but it may well come down to funding. However clear your ideas are about what DS needs, if they're paying, they don't have to go with what you want. Unless it's cheaper at which point they may jump at it! And if you have supporting evidence from a GP that should help as well.

Just to give you some background, I work in a particularly cash strapped LA area. This may not apply to you as I don't know anything about Glouctershire, but there might be some similarities.
My LA are now only funding the top two levels of need. There are various other strands to the policy - one is the use of assistive technolgy to keep people out of residential care for as long as possible, so they give a package of money for people to pay for their care and support needs and a bit of hitech stuff - falls monitors that sort of thing. The crucial part is that the assessed level of need gives you a certain sum of money and you have to make that stretch to the level of support/services you require. If it's not enough you may have to cut back so people might have to give up a day at a day centre because they can't afford to do that and to also have the support worker coming it to help with personal care, money and meds. Or whatever. They are also saying that they are not looking to place most people in residential care, because supported living is econonically more viable.
On the other hand, they're capping the amount of money given to people with multiple and profound disabilities who live at home, (we're talking the level of need that needs 2 carers, 24/7 care hoists etc) unles they're self funding. Those people will be pushed towards residential because for them it's cheaper.

Now clearly your son does not fall into that very high need category, so you need your assessment to be accurate enough that they're prepared to accept he needs the level of support and pay the fees for residential (24 hour care) as opposed to having a support worker go in every day for a few hours which is much cheaper. If most of his support needs are during the day and can be managed via assistive technology and support staff a couple of times daily, then residential might not be on the agenda.
I'm not trying to scare you. But in some places the reality is that choice has gone right out of the window because it's just not affordable any more.
You should get something and there are the appeal processes if you don't. But if you agree about the level of assessed need but have differing ideas about ways of meeting it he who pays the piper generally speaking calls the shots.

Edit - will the advocate be there for tomorrows meeting, because they should be, if at all possible.

Ames

In my area it's a huge form, more like a booklet. Make sure they go through all of it. When I had an assessment she kept skipping pages, saying they weren't relevant. When I got the report back I found that it was relevant, and she'd just ticked that I had no problems with lots of things I did need help with.

Also, my experience was that they'd say things like that I didn't need to be able to shower because a strip wash is perfectly adequate for someone who has no reason to leave the house (ie who doesn't work). So be prepared to challenge daft stuff like that.

elsien

Forgot to say as well, it's ok to say to the social worker that you believe your son lacks insight into certain areas of his condition.
Also don't forget those key words, vulnerable and at risk. At every opportunity. Maybe think about some scenarios where he has/might struggled to cope in an emergency.

nightsong

Thank you again, kind posters :T

Ames, thanks for sharing your experience. I will look out for them skipping parts of the form! And yes, I've already heard "can't he have a strip wash". (The answer is no). I had read that they are obliged to ensure people have a bath/shower at least once a week, so pointed this out, which shut her up temporarily.

elsien, thank you very much for your detailed comments. I am aware that we may have great trouble getting him into residential care, for the reasons you outline - though you have made me much more aware of exactly how it all works. Gloucestershire also only funds critical and substantial needs and my experiences so far suggest that social services are really struggling. We can but try I suppose.

Yes, the advocacy service woman will be there, and also his support worker so hopefully between them they will make sure everything gets covered properly. I've written a kind of report detailing all my son's problems. I've put in lots of examples like him giving himself food poisoning, frequently losing his keys, being conned out of money and so on. And also another brief one saying what I have been doing for him as his carer, what I can't do any more, and what just hasn't been getting done. There will also be a letter from the GP.

So hopefully all that remains is to try and get some sleep tonight!

SandraScarlett

I'm absolutely thrilled that you've found a Care Home that ticks all the boxes, and that you have GP support for this. :j:j:j I wonder if it might not be a good idea to say at the very outset of the meeting that you find it necessary, vital in fact, but difficult, to list the negativity of your lad's condition, "which by its very nature, isn't perceived by him in the same vein" and you don't wish to cause him distress.

They may say that they know this, and there'll be an opportunity for you to talk later without him there? I'd also hammer away at the phrases that elsien suggested, like vulnerable, and at risk, and perhaps add duty of care, and "realising his full potential" and that the Care Home seems admirably placed to help him achieve a quality of life that is not possible on his own.

And if there are any forms that you have to sign, or a booklet, or even the equivalent of War and Peace, then you have every right to read this through first. So many people are given a pr!cis of what they think they're signing, and then find themselves not wishing to "waste" time by reading it first. Noooo!!

I'll have everything crossable crossed for you tomorrow. :)You're doing your damnedest to get your lad the best sort of future that you can, and I sincerely hope you're successful.

xx

I have no idea why MSE have substituted ! for the e that should be in that word!

nightsong

Thanks Sandra . I very much like the phrases you use - already up to speed on vulnerable and at risk but also will express the difficulty of talking about all this (which is true of course - it's horrible having to talk about this stuff in front of DS and he does lack insight).

I particularly liked -

"the Care Home seems admirably placed to help him achieve a quality of life that is not possible on his own."

Will definitely work that one in! Also thank you for the suggestion to read everything carefully, you are right of course and it can be easy in that situation to skimp on such things but it's vital to know what they're saying.