I would love an opinion about an issue with Social Services

[Lazydaisy]

I have a 22 year old son with Downs Syndrome and Diabetes. The Diabetes causes more of a problem than the Downs. He is unable to attend the Social Services Day Centre after issues with his Diabetes last year, which I put in an official complaint about.WE have reached a very successful stage 3 complaint, but during this time, I have had to work really hard with my son's Social Support worker for her to understand his Diabetes needs, as staff are not trained in medical awareness.

Now,and it seems a very big co-incidence,I have been informed that my son will probably be transferred to a new member of staff, so we will have to start all over again. Meetings for direct payments, ILF, annual reviews will all take me, his main Carer, so much more time than if he kept his Support Services manager. My son has to test his blood sugar before each meal and his support staff have to calculate his insulin needs according to what his blood test reads, his estimated carbohydrate intake at that meal, and his expected energy output(exercise!) after the meal. My son is very unhappy at the idea of changing his support worker, as soon as we have had this satisfactory result with the stage 3 complaint.THey haven't even asked if he wants to meet the new worker, they are just bringing her along to meet me.I think they have forgotten about clients rights, they don't seem to have any at all.

I would like to know if we are entitled to ask to keep the former Support Manager, and if I can insist on them making an appointment at a time when my son is at home?

Thank you for any advice.

[parsifal]

If I've read this correctly your son is the client so he has every right to be present when the new support worker is introduced or do your social services deal with all their clients by proxy . The new Mental Capacity Act enshrines in law a presumption of capacity unless proven otherwise also clients wishes should be taken into account when making decisions, maybe your social services department isn't aware of the Act? I think that I would insist that he is present at the meeting if that is what he wishes, he is entitled to express any views he may have and should be assisted if necessary in expressing those views. I sometimes think that management issues take precedence over clients' needs and, without knowing all the details, this appears to be the case here.

[Lazydaisy]

Parsifal,

Thank you. I find it so annoying that Social Services always make appointments with me,and not my son. He is perfectly capable of reading a calender, and we have brought him up to learn to be as independent as possible.I just wondered if I was being oversensitive about it. My son always seems to be last to be considered, below Social Services staff, and below his parents.He did have a good support with the local Advocacy service, but the person he trusted most has finished there for a few months.

[parsifal]

This is a bit like me accompanying my husband to hospital appointments, etc. Many consultants will ask me questions but I refer them to my husband and then correct the wrong bits and add the issues he's missed afterwards in an inclusive way. It's a struggle sometimes to encourage independence and it doesn't help if services reinforce dependency, I always insist in all matters that my husband is involved in decision-making or that I get his agreement before doing things, actually I think that he would often prefer to just let me get on with it but learned dependency is desperately difficult to reverse once it's entrenched and leaves the individual vulnerable should anything happen to us. I think that you're right to be concerned, to ignore an individual in this way is to negate their existence.

[Lazydaisy]

It seems as though my son will not be able to be involved in any decision making!I have changed the appointment, to a time when he will be home, but when I asked for a reason that they would want to change his staff, and that he isn't comfortable with the idea, I was told that it doesn't matter, there won't be any problems. Famous last words!

It all still seems like a huge coincidence coming less than 2 weeks after a successful stage 3 panel hearing for a complaint against Social Services, with regard to my son's diabetes care. If this change goes ahead, then I will end up having to give up my time , yet again, to educate this member of staff, and the possibility of the same issues cropping up again, when there is no reason to change.

In fact, I believe it will affect my health, as I am also going thorugh a crisis with my younger son, who has varying health needs. My brain, that I was once very proud of is turning to mush inside my head!Thanks for listening.

[parsifal]

It really shouldn't be like this, the constant fighting for services or appropriate services. And it's such a waste of public funds as well as of our time and energy and the loss of quality time with the person we care for. We're constantly told that there is insufficient money to provide services to all but the very few and yet money is wasted like this across the country.

As for your brain, at least you've still got one albeit mush, mine's been missing for a couple of days now and still no-one's returned it , caring seems to leave no time to think about anything beyond survival, it's not just the caring responsibilities, we seem to end up taking on responsibility for everything that keeps the couple or family afloat from finances to the minutiae of daily living.