Thanks for your reply. Yes – I’m aware of the MCA, including DoL and Best Interests decision making and would always make sure these things were considered when appropriate. However, I had not heard about the role of Relevant Person’s representative so thank you for that information.
You are right – the problem is more to do with being listened to but it is also about me learning to communicate in a way that does not upset my son’s PSAs.
I’m away from home at the moment so don’t have the original email I sent to the forum and can’t remember exactly what I wrote, so please forgive me if I repeat myself! The history of all this is as follows:
My son moved into his own rented home with support over 10 years ago. He lives on his own with 24/7 support. His support then was provided by a small private company commissioned by the LA. The Provider recruited the staff. The Provider was fairly ok to begin with, but then the small company got taken over by a much bigger one. Over the years both ourselves (i.e. the family) and the staff became increasingly unhappy with the Provider. Eventually we decided to ditch the Provider and get DPs. We kept on the same staff – so two have been supporting my son over 10 years, and two for about six years. We have one or two others who are a bit newer. They are all lovely people and very caring. However, over the years that the Provider employed them were largely left to their own devices and built up some practices that I was unhappy with. They had become “too comfortable”.
We decided that we would employ the staff directly and set up and Independent Living Trust to do this. There are two family members who are trustees and two family friends. Over the last year, now that we are “in control” I tried to gradually make some changes. We had put up their wages so I felt I could expect a little bit more from them. I wasn’t actually introducing new ideas – I was just trying to make sure they all did things in the same way as my son needs consistency. I was also trying to make sure they didn’t over-support him. Some were doing far too much for him, and not giving him enough choice and control, in my opinion. I tried to praise them for things they were doing well, but did tell them when I saw things that I felt were not quite right. However, even though I thought I was doing this in the nicest way possible I obviously wasn’t. They all got upset and complained about me!
If you have a family member with some sort of disability or problem who has capacity it may be difficult but you can learn to sit back and let them take control of their own life. However, as you say, you can’t do this if your adult son/daughter has a severe learning disability and can only make the very simplest of choices, e.g. whether to have jam or Marmite on their bread. I’m not at all worried that my son is not being looked after well – in fact in some ways he is being looked after too well! I just feel that he is losing skills and being confused by the different ways that people do things. He is also not always getting things that he likes.
Of course, I was upset too by the fact that they all felt I was being too demanding! I apologised of course. I didn’t want to risk upsetting them any more so I just felt I had to stand back and let them get on with it for the time being. Nothing dreadful is going to happen to my son whilst I do this. When I am feeling a bit better I will hopefully be able to get more involved again, but I will have to make sure that I don’t make the same mistakes and upset them all again.
The trustees felt that part of the problem was to do with the fact that there was no-one who was actually in charge. So they have promoted one of the PAs to be the Team Leader.
I think I have difficulty knowing which things I should tackle and which things I should just accept. So I think what I need to do from now on is discuss things with I am concerned about either with the Team Leader or the trustees and let them help me decide whether my concerns need to be addressed or not.
So, as you can see, having Direct Payments which enables families to have more control can cause difficulties, especially for a parent like me. I have had to fight for everything for my son since birth, and it is difficult to change from fighting mode to encouraging mode!