Appendix 2: Interview transcript with young disabled person
Interviewee: YP (young woman with cerebral palsy, lives in own tenancy with social care support, wheelchair user)
Interviewer: FM
Date of interview: 25/06/13
Length of interview: 45 mins. (recorded time)
Location: Theatre cafe
Notes: General introductory greetings, explanations about the research study and informed consent were not audio recorded. Background noise impacted on the recording quality and at times made some speech inaudible. These breaks in the recording are indicated in the transcript.
FM: We discussed a little bit about yourself, where you live and some of the work you are involved in and some of your experiences as well…mm… Can you tell me about, you told me about the services that you do receive on a daily basis? How did, did you have a choice on services that you receive, or the support you need. Did you have a choice in that?
YP: I do now…it wasn’t always such that way. I think that for a while it was just assumed that I would have the service because everyone else had it; that’s the way the system was, and being a young woman you had to run within the system’s realms. However, I am slightly different in a lot of ways in that a) I can’t run and b) I don’t do systemic behaviour. I am a unique individual with a unique set of needs and expectations. When self-directed support came along I went to a workshop because I thought it might be a good idea and I am like the more the person was talking, the more I am going ‘is this for real?’ Can I actually, is this actually going to work? And it does work, it really does work. Mmm, but it needs to work more. It is not enough…do you understand what I mean by that?
FM: Well, say a bit more. Is it not enough for you, or not enough for other people?
YP: It’s not enough for the fact that…I know it’s in its infancy here…and I completely respect that and I have the utmost respect for the people trying to get this off the ground. I understand that every new initiative has small but significant teething problems…mm..but different regions have been able to get it off the mark much easier and much quicker and I can’t understand why the participation in such a project isn’t higher on the uptake. I understand some reasoning for it but not all, because this is like your ticket to freedom. The way I understand it is…the way I understand how it works is that you have a support/care budget, whatever they like to call it…whatever the terminology is these days…and providing you don’t use it to buy illegal services or illicit substances then…I am sure by that you understand what I mean (FM: yes, yes)…then anything you do with self-directed support funds is supposed to enhance your life, but I have great difficulty with it. Although I have been able to achieve at some level which is great, I am still not able to utilise it to its full potential.
FM: Ok, explain a little bit more about that then.
YP: Because it is not widely known and agencies are not together enough to work with you.
FM: Ah, OK. And the people you have chosen to support you, are they from an agency or are they individually…?
YP: They are from an agency, and the reason why I have chosen an agency and not to employ individual workers is purely from a, my own security point of view. Because if you have an agency you are not responsible for finding any gaps in the support that is needed. If you take on individuals then you become the employer. Although that sounds great in practice, in theory rather, it is not so good in practice because you take a lot of unnecessary pressure on you. If people want to go down that route that’s more power to them (laughs).
FM: I understand. For you at the moment the agency gives you some security and protection…less pressure, yeh?
YP: Because I’ve got my life to lead I don’t need to worry about managing people. (FM: No, exactly, no). And that is what you become, you become a manager. A manager of people with all the sick pay, taking the initial staff on, so I am supported by an agency.
FM: And how, and how long has that been going on for?
YP: On the direct payments scheme, on self-directed support as it is now, three years. That is the portion of my support that is completely self-directed. The other portion of my care is, I don’t know why, but it’s not. So one part of my support is fine. The other part is OK in a way but it should be better.
FM: In what way should it be better?
YP: Just that the cross-over, what you have, if you want to go out for an evening, as long as you can prove that it is going to enhance your life and your welfare and your wellbeing, or whatever, then you should be allowed to do so. You are still obstructed by gatekeepers who say actually you can’t just do that; we have to make sure it’s done properly…. I am an adult.
FM: Where are the gatekeepers from? Are they from the agency or are they from social work?
YP: From social work.
FM: Can you sort of think back to about 3 years ago. How did self-directed support come about? Did someone come to you, or did you hear about it first?
YP: No, I had been going on and on about wanting to live my own life. [Background noise obscures 10 seconds of recording]. You can’t do that…you have to run it by someone first, and it has to go before this board and that board, and suddenly I heard of this new thing that was happening that I might be interested in. That’s when I went to meetings that were held…there were a series of workshops held. I couldn’t believe what I heard…and I knew that is what I wanted. And then I slammed up against a brick wall…”Ooh, we are not up to speed on that yet”, and I went “so I can’t have this” and they said “no, not yet because we are not up to speed, we don’t know enough”. And then there was a change of management and there was one lady who said “we are trying to promote this self-directed support, would you be interested; this is how it works, blah de blah…” And then I was given my budget and I was told how it works… [few words indistinct]. That covers the support side but the social side is not working. (FM: OK) So if I want to, say I wanted to go to a conference in London or whatever and I wanted someone to go with me. I could use some of my SDS money to pay for someone to go. [few words indistinct]. But they say can I do this? And I say hey it’s my own money, I can use it for what I want.
FM: So is there a lack of understanding among the staff; a lack of willingness, or just a fear that they are working in a bureaucracy where they have to check things out?
YP: It’s all of these things. I think it’s they are so used to working within an institutionalised ideology that they have to check with the gatekeepers every time. And I say “wait a minute I actually have a budget”, and I can prove that I am using it for legitimate purposes, doesn’t matter what it is just as long as it is nothing illegal or illicit and I have enough of the budget to pay for my ongoing support…
I am probably talking too much.
FM: You are not talking too much at all. Just in terms of you taking that decision to take on that responsibility. Did that just seem like the right thing to do or did you have to think carefully about it…?
YP: No, I mean with, if you want freedom, with the rights come responsibilities. You can’t have one and not expect to have the other.
FM: For you, you were completely comfortable with that?
YP: I can understand why people may have to think long and hard about what they do, but for me it was just…I had spent so long in institutionalised settings…I wanted to, I wanted the chance to be the individual that I was and not be cocooned or restrained by the gatekeepers or what appears to be an antiquated system. I had already proven to people that I could live on my own with support so then why didn’t I have the rest of my life. (FM: yeh). Why couldn’t I choose to do what I wanted?
FM: These are really good examples that you are giving. I am keen to find out more about how you make choices. You said that self-directed support was for you. How then did you go about identifying or choosing an agency to support you.
YP: I was in a bit of a crisis situation where one agency had dropped me and I was studying at university and I found myself with an agency that I had never worked with but I got on with a couple of members of staff that I saw regularly, and I liked the way they worked and their ethos. OK they f*** up sometimes, but what agency doesn’t. [Background noise: 40 seconds]. If it doesn’t work you move on. It wasn’t so much choice as necessity, but I have fallen on my feet as it were. As much as the agency has its flaws its good points outweigh the bad. [Background noise obscures 30 seconds of recording]. In a way going back to the choices thing, I wasn’t given a choice…a good choice fell into my lap (laughs). [Background noise obscures 20 seconds of recording]. I don’t do meetings. As I say what normal sane person has a meeting just to change one aspect of their life: “you kidding…your days of having me as your institutionalised spastic are over, I’m done, I want to live, not just exist”.
FM: So how have people responded to your wish not to have meetings? Do they still have them without you, or…?
YP: They wouldn’t dare. They wouldn’t dare. They have a file on me but they are not allowed to bring it anywhere near me. Because I don’t do files, because a file will only tell you so much. [Background noise: 15 seconds]. They don’t like it because they like to medicalise, quantify, and make it difficult, but what about my life? [Background noise: 30 seconds].
FM: Have you found over the years that people are keener to talk about problems rather than strengths or solutions?
YP: Oh, yes. But if they can’t figure it out, they can’t work out how you can figure it out. Because they can’t come up with solutions, then when you come up with solutions they go ‘oh, where did that come from?’ You know what I mean though? It’s no rocket science.
FM: Tell me, with your experience, if you were advising a young person who was say 18 and about to leave school, and needed some kind of support, you know some kind of help from social work or social care, what kind of advice would you be giving them?
YP: It depends if you are on your own or with someone. [Background noise: 10 seconds]. I would work with someone they feel comfortable with and I would work with the two parties together. And what I say is find out where they would be, [background noise; 30 seconds]. It is about them feeling comfortable and you will probably get more out of them and a realistic and honest answer because they feel comfortable rather than what they think you want to hear.
FM: Sure, yeh. And you have talked about in some ways how some of the choices have fallen into your lap. (YP: I have been very fortunate). But what, can you say what you think about how people make choices. Do they have to experience things to make choices, or can they read about it, visit a place?
YP: It depends on what you have the capacity to do. I suppose if you wanted to, if you want someone to assist you, you can go onto Google and get the people from there to help you that way. I am a very old school person. If I want to go and see something I will see it. I like people, don’t get me wrong, but I would rather go and see it.
FM: So you think it is important that you experience things?
YP: I would be a very different person if I didn’t go to uni’. Uni’ gave me the extra spear that I didn’t have before, so I think it’s important to go and check out these places, but I think it’s important to respect that although that is me it may not be everyone’s cup of tea. If they want to do it another way, they can do. The best way I can find out is to go and do it. I have scared the living shit out of people because I have gone in and done it. When I did my degrees people up here were shitting themselves, because on my own for whatever reason, I am going to do this.
FM: But you personally, did you feel that you needed to discuss choices before going ahead. Some people do like to check things out with other people, and others just like to make their own decisions.
YP: When I am really unsure about something I will ask people. I surround myself with people who know me. I am going to make the decision, but ‘help!’ [Background noise: 17 seconds]. At the end of the day, I will make the call. But if you can get other people’s views, their take on it, to see where they come from, because they may be able to see aspects that I may not have thought of. {Background noise: 22 seconds].
FM: Last question. Is there anything else that you feel we have not covered?
YP: All I would say is when people make choices, be aware of the consequences of your choices. Every action has a consequence and as long as you can take that on board then [background noise: 8 seconds]. I don’t need to be cared for, I need to be supported to be allowed to live the life that I choose to live. If I needed care I would be in a high dependency unit (laughs) but I am now in a position to go out there safely. It is not just about living your life; it is about knowing your limits and having respect for your abilities. SDS should be an addition or an enhancement to your level of independence or interdependency. It doesn’t matter whether you are disabled or not, when you strip back life we are all interdependent. I know I will be interdependent for all my life.
FM: Thank you [YP name]. I am going to put this off now.