l take your point Excaliber no we wont be hear for ever and l try and let go as much as possible and l know the more l do the less social work will have to put in place hence the reason for going for direct payments in first place for my daughter to be able to live with other people but at the moment its not meeting her needs may have to have a word with agency as there is only one of the carers that can drive and we live quite a bit away from local amenities
it does really work for some people and thats great but for us at the moment its a waste of time either me or my family could do the same for my daughter these DPs where set up for her to do something different and interesting

take care
Jeanxx

My adult son's DP's work well; agency staff are excellent (after some bedding in) and the support worker we employ ourselves is a buddy as much as a support worker.

A huge part of this package is to slowly move my son's care over to others; to make him independent of myself and his family for his support. He has autism (and partially controlled epilepsy) so it's a slow old road but he has made huge strides these last two years - coping well with a changing support network.

Yes, a lot of the support and care I can do for him myself. But this wouldn't help my son get used to others doing it for/with him - a vital step for his long term wellbeing. When he is being supported in the home, I make myself unavailbale to him or just let him know, firmly, that his worker will support him, not me. I would love to go on some of the outings with him but that would defeat our long term objectives. We have family outings, we will always have family outings but in the same way that our daughter is free to go and do what she wants socially, to live where she wants to live and with whom and to live an independent life, so our son must be free in the same way. We are working to give him that and the DP's are vital.

My boy isn't exceptional, he has Downs Syndrome, but he has always been in mainstream; nursery, primary school, secondary, college, because we werent impressed by the alternatives.. they seemed too cloying.
Sometimes we just have to let go a bit: if we aren't getting support from the community, maybe it's because we haven't learned to trust people, or maybe we havent learned to trust our caree.[/quote Excalibur]

I cannot trust my caree.Yes that is true.I would not have half the worry if it were not for his Diabetes. He has Downs Syndrome, and he is perfectly capable of doing lots of things, but only if his Diabetes is supported by others.
10g of carbohydrate is the equivalent of 1 unit of the insulin he uses, so he could have a 40g carb lunch, and that sounds as though it should be 4 units, doesn't it? Wrong.It is also dependent on the amount of activity he is going to do after his food, and what his blood sugar is at the time. If his blood sugar is 2, then he will have to eat,and then take another blood sugar half an hour later to see whether he even needs insulin. If his blood sugar is 10, then he really needs insulin, and then to wait a while for it to start working before eating. It is all tough to work out, even when you don't have Downs Syndrome.
I cannot take the risk of letting him be more independent. We try,of course we do.But if the pub where he plays pool runs out of diet coke, he just buys ordinary and drinks it quickly before his support workers see.He will put sugar in his tea, even though nobody in our house has ever taken sugar in tea.One time he wasn't listening when his support worker told him to have 2 untis of insulin, and he had 10, so I had to drive quickly out to his day centre, to collect him, as they did not know how to cope. (they are learning gradually, and they are supportive towards our family).
His safety comes before everything else.

My experiences so far have taught me never to rely on others to provide safe, appropriate care. If somone could provide this for my son I would welcome them with open arms. I am not a control freak but I know that if things go wrong it will be brought back to us and our son will be in a worse position than before.
Last year he went out with LA staff, who we had been assured had training etc. They took him somewhere without toilets and he ended up soiling himself (something that hasnt happened since he was little boy). He became distarught and stripped off his clothes and the "carers" rang the Police. They also rang me at home because they had no idea what to do, I had to listen to my sons distressed screams in the background. Our lad spent months in absolute terror of anyone even coming into our home for fear that he may be be taken on an outing.

Yes it works well for you Excalibur and that is great but it does not work for everybody. As for mainstream my son was tipped out of his wheelchair and broke his front tooth by the able bodied kids - there was severe bullying and no understanding or protection from the teaching staff. The special secondary school he went to was excellent when it was only children with physical disabilities but then they started admitting children with behavioural problems and the staff had to spend so much time on these kids that the teaching suffered. My son left at the right time but he could have studied for a lot more highers than he was allowed to (he passed 5)

My son has no learning difficulties whatsoever - he needs someone to be his arms and legs, to put him on/off his ventilator, to wipe his nose, empty his leg bag, get his drink at the bar and put his extra long straw in it, move his feet for him etc. His needs are purely physical and he wants to do the same things able bodied men take for granted - going to the dancing chatting up girls etc.

Even if he gets someone to take him out he cannot use public transport to get there - it is not safe as there are no restraints for his extremely heavy powered wheelchair. His dad or I would take them where they want to go and pick them up again - we are perfectly willing to do that as there is no way we would allow support workers to drive that van - not judging by the way the workers treat our property in our own home. They don't give a toss what they damage as it is not their stuff.

People are saying also about things in the long term - remember for my son there is no long term - every day is borrowed time.

All the best
Eun

If your son had DPs under an Individual Budget both he and you could choose a suitable PA to do the things with him which he quite rightly wants to do, perhaps a friend who you trust or there are PAs who are highly experienced in working with severely disabled young adults. I accept that he would lose some of his income but unfortunately that is a price which many of us pay for an enhanced quality of life for the people who we care for, it may not be fair but it is often the only way to access services and to see the pleasure which having a more enjoyable life gives someone you love makes it worthwhile I feel, particularly when there is no way of knowing how much longer this enhanced quality of life will be physically possible and the time available is limited by disability or age or both.

Parsifal - we have no friends there are only the three of us. Friends soon fade into the woodwork. Even when making our will there is no one who can support son once we are gone. My brother cannot do it as he cares for my father and anyway he is too old we need someone of son's age. We have tried to identify someone who can work with severely disabled persons - there is no-one. It is not just the money.

Eun

Sorry forgot to say SW won't give us an Individual budget anyway - he will cost them too much money - they told us it is either us or an old folk's home - that is just the way it is.

Regards

Eun

in reply to your post daisy, its important before anybody takes your son out for them to get to know him and him to get to know them. its not fair on anybody to just take him off like that. care plans have to be written and read, time spent with him in his home etc. this is all part of the planning that has to be done just to get things right.

l will be cancelling my daughter,s DPs as her needs are just not being met social work make the rules to suit themselves l choose direct payments as respite wasnt working social worker said that although my daughter has both physical and learning disability (Autism and Cerebral palsy she would put in form that she was able to speak for herself just not true but l went along with it at the time thought l would be getting more than what we got l will just cancel it altogether as even if l go to other agency it would take two people and we dont get enough funding for that. How come it takes two from agency and yet when taking care of all her needs l can do it on my own
l am glad it works for the other people who have posted but it does all depend on the individuals needs
And l dont know how to go about cancelling them as they now think my daughter can speak for herself and will expect her to do it which is just not the case she still speaks in broken english we will have to wait and see

take care all
Jeanxx

Hi Pamr,
My son had a fairly indepth care plan with involvement from a psycology and behaviour team. A risk assessment for the outing hadnt taken place (unbeknown to us). The carers had also spent time with us at home

sounds as though almost all that should have been done was done daisy. except the risk assessment of course, and that would have highlighted the problem of the toilet facilities - i hope it would have anyway.

hearing other people's stories has made me really aware of how good our Personal Assistants are. We employ them directly (with the help of carers support doing the paper work) so do have complete control. One or two have not worked out, but thats life i suppose. the others have all been great.

i wish your son well for the future.

pamr wrote:

hearing other people's stories has made me really aware of how good our Personal Assistants are.

So true, Pamr. And I find it shocking just how very varied peoples' experiences are.

I do think that, if you are unsure of the obligations of the services and the various statutes which govern these, then it is wise to have an advocate present for assessments. Advocates can come from many different organisations and are invaluable in calling the bluff of bullying authorities!

Jean - just to go back to something you said earlier - you said you give them lunch and coffee all day - does this mean that you are funding the coffee and food for the care workers who come in? In any other job they would have to provide their own lunch and coffee - just because they are in your home doesn't mean you should be paying for this - OK it's not starbucks prices but most places of employment have machines or staff contribute to the coffee money - do any of them ever divi up for a jar of coffee? I could understand it if they were volunteers but they are paid employees coming to work - might seem a bit tight begrudging them coffee but they really should be providing their own lunch!

I have heard before of care workers having their lunch paid for by the disabled person if they are out shopping or something and think that is wrong too - one group I met the staff were ordering the most expensive things on the menu!!!!!!!

On a lighter note there was once a huge problem with a pub locally that insisted on putting a table in the way of the door to the disabled loo - people would have their meals interupted and have to move in order for wheelchair users to get to the loo and the pub bosses refused to change it. We were having coffee one day I heard a group of disabled people and their carers discussing where to go fpr lunch - I told them about the two for one deals at this particular pub and they immediately decided to meet up there at lunch time - I do so hope the pub learnt how NOT to block the dis loo access when twenty wheelchair users turned up at once!!!!!!!!!

My DD is also desperate for some company her own age. DH and I do quite a lot with her but she has nobody her age to go out with.

Earlier this year we found out about an organisation in our area for young people with learning difficulties. They go out bowling, swimming, cinema etc. She seemed interested and then they said it was going to cost her £5 per hour plus the cost of the outing plus transport. So just to go bowling one evening which might be say, 3 hours, would cost £15 plus whatever bowling costs these days. One of us would have to drive her to where party leaves from (30 mile round trip) x 2 (or hang around there until she gets back). An expensive night out!

I just can't get my head around these direct payments either.