Self-directed support and peer support

Pam Duncan
Published on 27 Feb 2012

Pam Duncan, Policy Officer at Independent Living in Scotland project, speaks about her experiences of self-directed support in Scotland.

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When I started out using care that wasn't provided by my family, so formal care as I would call it from the local authority, all of my package was funded through independent living fund and directly from the local authority to an agency that I chose, so, a form of self-directed support, an early form of it, particularly obviously the ILS side of it, but also the way in which the local authority bought the service that I picked, and interviewed the agency. So the agency provided me care whilst I was at university, and partly that was because, partly I chose an agency because I was eighteen years old and I certainly was no employment lawyer, and still I'm not an employment lawyer, but I was gonna have to make new friends, live in a new area, move away from my family, learn how to budget, know what you buy when you cook mince and potatoes, all of these things, I also didn't want to also have to become an employer at that point in time.

Partly because there wasn't the support services in the local area that I really needed that could have been essential to that decision and helped me maybe make my decision different. But also because I wanted to see how I got on with an agency and try out things. So I worked with an agency in the first instance, and it went well until the people who they had put in place, were either off sick or needed holidays, or moved onto a different job. At that point, the system became haphazard. I was getting different people in, people who would then have to very, very quickly on the job, train. You know when someone turns up to get you out of bed, you don't have much time to train them on how you do it, especially if you have to be some where in an hour. And so that became a bit onerous, and the agency weren't responding to the things that I needed. What I needed from the agency was continuity, consistency, and understanding of what I needed. On one occasion, for example, I was asked to go along to a meeting with the Prime Minister, of all people at the time, and I had to give security clearance. And I had phoned the agency and said my PA's got to come with me. I need to know the person will definitely be this person. That's fine, that's okay. But then they sent someone else on the day and that meant I couldn't attend the meeting because I couldn't go with someone who hadn't passed through security clearance.

Now that was something that was incredibly important for my own personal development, my career, my education and all of these things, but because they hadn't responded to my very specific needs, and I know that is a unique example, but that could be something, it could be a cultural need that you explain and all of these things are extremely important. And agencies, now that self directed support is to become more of the norm, will need to be more aware of that particular nuance and how they market themselves and I know that they're beginning to go down that route to look at marketing on a more individual basis. I then started to employ my own staff as a result of one of my PAs through the agency going on maternity leave and I thought this might be a good opportunity for me just to say right, I'll move on and try it myself. So I got a lot of support from the support organization at the time and from other disabled people who helped me through the process, helped me understand employment law.

Very often whenever I do presentations, either personally or through my work on this, people say, but you're a good candidate for this, you obviously understand that you're articulate, you must know employment law. I didn't wake up one morning knowing it, these are, like everybody, we develop our own, our continuing personal development is something that by the very nature of the term 'continuing', it continues and it grows, and, we're all learning all the time, and I'm exactly the same. And ok, I have certain predispositions to been able to, I like learning cos I'm a bit of a geek. And so, you know I do enjoy taking on new things, but I still needed an awful lot of support to be able to do it. And that's one of the things that is essential, an essential part of self directed support is ensuring that disabled people and others who access it have support to be able to make the most of it. Not just support to be able to choose who they're going to employ or what agency they're going to pick or what questions they're gonna ask them, but support to think how they wanna get the most out of their package, how are they gonna achieve what they want to achieve in life, to raise their aspirations, and that doesn't just come by tick-box support. It comes from peer support, it comes from seeing how others have done it for themselves, and that it can be done. And raising aspirations is very much about raising consciousness as well, and letting people see that they're more than they ever thought they could be, and those things were important to me when it came to deciding to use personal assistance and get direct payments, but also in terms of choosing the people that would work with me, and that's a really, really personal thing. And there's always a lot of discussion around work force issues, and regulation of the PA workforce for example. And I've always kinda shied away from over regulation of the PA workforce, for a couple of reasons. One of them is that you can never be 100 percent sure whether the person is chosen through an agency or whether you interview them yourself, whether that person is going to end up robbing you or whether they're gonna be the best PA you could ever choose.

You can put certain systems in place so you can ask the right questions, you can have a good robust recruitment procedure, you can do disclosure checks, all of these things, which as a personal assistant employer you can do as well as an agency if you have the support to do it and that's why support organizations are essential. For example, when I use the agency, one of the people did end up stealing money from me. I've never had that problem when I chose my own PAs. Now that's not to say the agencies will...and I don't mean that, but the point I suppose I'm making is that, you can never rule it out, you can never say that one option is safer, really, than another. Of course you can without support, if someone just told go and pick Joe Blogs off the street, they''ll do ya, then of course you can say there's a bit of a risk there, less of a risk here, but with support in place, there is no reason why people cant go through a very robust recruitment system. And what someone wants in a personal assistant is so specific to them that it's hard to see what generic requirements are. For example, for me personally, and this may not necessarily be good practice and certainly when I was working directly on a one to one basis providing support to personal assistant employers, I probably wouldn't have advised this, but one of the things I look for is someone who's got a slightly different experience to personal assistant experience in the past. Part of that reason is because when, in the past, when I've had personal assistants who have come from that particular background. I've had them come in and say, is there a communication book? Just talk to me, you don't really need a communication book, but for some people you would, and that's absolutely right and good and essential. But it's so individual, that there's no "one size fits all" and that's why support organizations from a peer support point of view, so disabled people's organizations are really, really good at helping to pick up on the nuances and the specifics that might be relevant to that particular person. So for example, a lot of the time when I was advising individuals, I would be saying things like, "So how you gonna make sure that one person knows what that other person's doing, and that might just be because I understand the person's got a lot on their mind, or it might be because the communication requires that something a bit more robust than just chatting.

So, all of these things are very specific and very individual. The qualities I look for in a personal assistant are things like someone who's quite outgoing, sociable, because I'm always out and about. It's very, very rare occasions when it's just going to be me and them. They need to be well and able to come to my work and work in an environment that is obviously acutely aware of equality and human rights. They need to be able to cook, because I like my grub and I like it good, so yeah again, that's one of the things that I ask for. And I like them to be punctual, reliable, flexible. Flexible is essential for me because it's not only impacting on my own personal choice about maybe having a lie-in one day, or getting up early the next, but it can actually impact on my career and my job, you know, if people want me to attend meetings or to be at work at a certain time, there's only so much flexibility I can have within that so when I'm interviewing, for example, I always say to people, "If you're late, I'm late. If I'm late, that impacts on my job, so if you're late, it will impact on your job and so there will be a..." Do you know what I mean? So these things are important. The other thing that I always put at the head of any advert is that you can do hair and makeup, which a lot of people find, you know, what about health and safety, what about food hygiene certificates? I'd rather have somebody say to me, I've been working as a hairdresser for five years, do you want me?

But that's a personal thing to me what is important is that the person is supported to understand what is important to them, that they understand how the system will work, what the person as an employee, and what the people as employees and employers will have to do. That there is support out there so it's often, it was said to me in the very first instance, this will be a lot of work, and I remember thinking, it looks like it might be. But in actual fact, once you get in to the swing of it, and with the support of the support organizations that I know the Scottish government are hoping to be able to support heavily. With the support from those people and the essential peer support of people that have been there and done it, it's much, much easier and possible to do it. And even in emergency situations, like for example, today when I'm filming, my PA is off sick. So I've had to call in someone, a cover PA and the only person available to do it is my partner's PA. But he needs her for an hour, just now in actual fact, which is why she's not here so I've had to change the way that I do things slightly. But because I've got, obviously, the peer support from my partner, which is fairly unique, but from other disabled people, you can talk to them about, 'what will I do?' Have you got somebody spare? Where's a good agency I can go to? So these are the things that are absolutely essential to help people to manage the sort of flexible package that they want. But that's not to forget that agencies can also be a really useful source. And I'm not saying I would never go back to agencies, because the agency served me well for a long, long time. My lifestyle became very, very flexible and in some senses, you know, sadly unique, because not many disabled people are lucky enough to be in position that I am, and hold down full time employment and that meant, you know, it changed the sort of things I was looking for. And at the time there was less of a focus for them to be specifically deem themselves up to individuals, but I know that they're working towards that, and so I would just say support is absolutely crucial, to help people understand what they need, what they want, and what the constraints in the system in terms of employment law are, and how best to get that. I recruit PAs off Gumtree, and things like that, and then I'll go through and, you know, I collect references, I do interviews, and all of the things you would expect, but other people will prefer to use the job centre, they might think that it's more robust and more secure, but it's very much an individual thing and the system must be flexible enough to accommodate that.

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In terms of the progress that we've made, I think that there is a much stronger understanding of disabled people as free and equal citizens in society. I wouldn't say that we are fully there yet but people understand that disabled people have now the same expectation as other people, and they want to be equal members in society, and they recognise that that is their right. And that's becoming stronger within the movement from the grass roots up, and it's also a message that organisations such as ourselves are taking to the Scottish government. So that's definitely a move in the right direction. The focus of self directed support as opposed to a more traditional method of care and support definitely demonstrates that. So it puts principles such as choice and control at the center of social care delivery.

One danger in that is that it becomes choice over the process, control over the process, choice over the person, control over the person. Control over the person within a reasonable and legal limit, of course, rather than choice in the wider sense, i.e having enough hours of support, allows me to make the choices to live my life as I chose, rather than have to be home at this time, have to go to the shop at that time, must show up at this place because the person will only use the local service, rather than the bigger superstore, you know, things like that so whilst the principles of choice, control and freedom are definitely now hopefully going to be on the statute books as part of the self directed support bill It's important that people understand that those principles don't only relate to the specific processes involved in delivering self directed support but actually key to the equal and full participation of disabled people in society themselves.

There's a couple of areas I think have not yet been addressed but they could pose problems in the future. One of them is eligibility, and the issue, and this has been raised at various events that we've spoken at, and I know that we've also spoken with the Scottish government, so it's something that lots of people will have heard. There's something that comes back all the time as, at the minute, you're only getting support, which is life and limb, literally, priority one, because of the financial situation that we face, and so if you can only get that, then the delivery becomes self delivered support which is essential and a step in the right direction.
What about all the people that are priority two, three, and four, and in actual fact independent living is very much essential to all of those people as well and for some people very little support that can be considered potentially priority four, for example, which could be social support, absolutely essential to this though an integration or participation of disabled people, so that's, I think, something we need to address as a society, and that issue is not something that individual social workers for example, can change on their own but it is something that they can advocate and pass up and down corporately I think there's a lot of political decisions that will need to be taken in order to address that, for example, where do we spend our money and where do we prioritise resources and I think those things are all going to be absolutely essential.

We all know that we're in a tight fiscal climate we don't have much money floating around but there are different things that we can do with our money, we can prioritise definitely at council level not just at individual level, in terms of self directed support is often seen as the individual will buy, get more value for money, basically, not necessarily cheaper, but will get better value for money, and that's true. But we also have decisions to take a corporate budgeting decision level, so for example, how much money do we want to spend on cycle lanes vs social care.

These are very political decisions and I'm not about to right now start some of the the debates on, make the arguments for those debates, but those are the sort of things that need to be discussed in the future I think. You know as a society, what is it we want to spend our money on, in relation to that is community care charging, and I think that's a huge issue, for many disabled people. So for those, for example, who are lucky enough to be eligible, secure a service, and then hopefully as well secure that service through self-directed support, which will hopefully become much more of the norm.

There are sometimes, in fact a very prohibitive charge for disabled people, and not just disabled people but all people who access community care services under the age of 65 and some over the age of 65 depending on the service. That charge is sometimes so prohibitive that it stops people from accessing it.

The reason that local authorities are charging is they say because of the shortfall in the money. And that, again, comes down to political decisions about how else could you plug that gap. 47.5 percent of disabled people live in poverty. They do not have the money to plug that gap. And to have to make a decision based on either paying for food and bills, or housing costs vs. your essential community care. Just getting out of bed in the morning is a very, very difficult decision for people to take in something that I think politically, and as a society as a whole, I think we need to start thinking about and I think it comes down to how we value social care as a society.

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One of the most important things for me, and for other disabled people that I've worked with and that I'm friends with as well, is that peer support as I've said, and I've probably laboured that point, is absolutely essential. And a key way that people access that is through disabled people's organisations in their area.

So for example, in Glasgow, Glasgow Centre For Inclusive Living provides the support for self-directed support. So they are the support organisation. But not only then are they in a unique position to be able to provide employment law advice, payroll support and in fact a payroll service, and but also they, as a disabled person's organisation, they are disabled people, and so they have a wide network of disabled people to access. And, that's a good way for people to be able to talk to one another, through that system and through that service and through that organisation. There's also Glasgow Disability Alliance in Glasgow which is closely linked to the Glasgow Centre for Inclusive Living and also, the project I work for - Independent Living in Scotland. So all of these organisations, and there are several across the country in various different areas, in Edinburgh, for example, there's Lothian Centre for Independent Living. And then nationally there's Inclusion Scotland, there's Self Directed Support Scotland and the Scottish Disability Equality Forum. So there's various disabled people's organisations who provide services, some of them. Some of them are kind of political activist organisations and others are specifically focused to Self Directed Support.

But, all of these organisations when they host events, when they provide services, are doing so with disabled people running them, guiding them and for them. And they are for disabled people, so it's a really good networking opportunity for disabled people, and it provides the service that Self Directed Support needs in order for it to work. So it's a kind of good bang for your buck if you feel like, and it works really well. There's obviously other ways that people can communicate, and I've always been a bit to say reluctant to set up a specific site so, for example, people say "what about a disabled person's Facebook?" and, I would say, well what about Facebook? Or, you know, what about Twitter?

So, those are obviously sites that, and I know for example through my own Facebook that I have used it to try and recruit staff in the past and I have also connected with other disabled people through it and asked them questions. I've had one question recently, a friend on Facebook has messaged me privately and said "I want to move to Spain, any ideas on how you do it as a disabled person?" So, these are all things that people can use and that can be promoted to them. But, things like community of practices that I know of as a professional, sort of, realm, if that's the right word to use, could be useful I think. Not so much for setting up a special Facebook for disabled people or around self directed support, but I still think there could be some specific, maybe on these questions and answers, which are only about that. Sometimes you'll engage with people on that basis, they're not always your friends so you don't always have the one Facebook, but you value acquaintances and they're good to know, if you know what I mean. And I suppose with Facebook there's issues of "are you friend, are you my colleague, are you my contact, are you my...?" So, yeah, you know there's scope there potentially. One of the things I think is most important is that the practitioners or social workers and other people who are particularly organising Self Directed Support for people, are aware of the importance of these organisations and of connecting disabled people with other disabled people.

It's absolutely essential. It can very often be the difference between someone with competence for self-directed support, and someone without it. And I use the word "competence" as opposed to capacity because those are two different things and, capacity can be very different and it's about, you know, you can then go down guardianship routes. But competence can sometimes be considered a capacity issue, and competence can be improved by various education tools and peer support is one of those things that are essential and also support of other disabled people's organisations. Or as I said, kind of two birds with one stone, if the disabled people's organisation happens to be the support organisation, which is a line that we would support. Then you get a kind of, all for one.

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As a younger person I spent a lot of my time in mainstream education, well, all of my time in mainstream education. My family thought it was really, really important that I would have a mainstream education but they also recognised that that wouldn't come without challenges, and we had to fight very hard - although I was too young to realise. My parents I now know would have had to fight very hard to make sure I had the support and access requirements that I needed, in order to be able to go to a mainstream school. So I attended a mainstream school and had lots of friends and did all the things that you do when you're at school: your homework and not your homework and spend you dinner money on sweets and crisps and occasionally alcohol when you get a bit older, and, you know, did the things that would be expected of a young person.

I was always very, very close to my sister and so she played a huge part in a lot of my sort of personal care that I needed: I'm unable to do anything really for myself and have support to do everything and up until the age of about 18 that was purely and completely provided my family. Mainly my mum. My dad did bits and pieces, like he would drive me to places, because the local public transport wasn't accessible, and I remember campaigning with my mum when they introduced wheelie bins and my mum saying 'I'm supposed to wheel my daughter about in wheelie bins or are you going to introduce low floor buses?' So all of these things - my family rallied round at that time and supported me to do lots of things.

And my sister did a lot of my personal care and so did my mum, partly because I was doing things with my sister, like, going out at night and my mum didn't want to have to get up at four in the morning. So, my sister would do things like that. So, for a lot of my life everything was just done and supported by my family, and I was lucky in that sense. Lucky, because they were willing and able to do it. But, also, because they didn't feel that I needed to be held with kid gloves and I wasn't wrapped in cotton wool. I got to do the things that everybody else got to do, and I got exposed to risk, that allowed me to have a healthy attitude to it and to understand and be able to make choices based on the opportunities that I had available to me.

Once I was 18 - in fact when I was about 15 or 16 - I made the decision that I wanted to go to university to study psychology. And my mum and dad at the time were like 'can you go to the local college?', and I was like 'well no, cause there are not - it was Moray - I lived in Elgin at the time - well they don't do the degree I want to do, so I'm going to have to move'. And that posed a lot of challenges and I suppose it was at that point that I became certainly a little bit more aware of the barriers that I spoke about earlier on: the barriers to my choice and control in my life and what I understand to be independent living, which I'll come back to.

So at the time, my mum supported me, and the school as well, very much so, through the education process - so they found out what I would need to be able to get to the university, and the grades I would need in my Highers and then, what support I would need once I got there.

So, I was going to be studying in Stirling, which is few hundred miles away from everything that I had known: my family, my friends, my education, my house. All of the things that I had built up around me that were supportive: I had an accessible house for example and my family provided my personal care, my dad helped me get around. That's how I was mobile. My friends supported me to be able to access social activities because they came with me. I was interested in art, I used to go to art classes. All of this, and also the pub and clubs and things on the weekend: all of these things suddenly were not going to be available to me because I would have to make new friends, and rely on them, I would have to learn new styles of learning and have support to do that. For example, IT equipment. I would need accessible accommodation when I was at university.

But most importantly, for me but not for everybody but for me as a disabled person, care and support was essential because I'd been so used to my family doing it and that process become probably the most lengthy and onerous process that I have ever been through in my entire life. And, that's saying something because since then, I've moved house and I had to apply for jobs and I've gained a masters degree. All of those things are quite big things in people's lives and I would still say that the process getting a support package to meet my needs as an 18 year old woman, at that time, was the longest, most onerous and difficult time that I had. However, it was fruitful. And, it ended up being a really good outcome, at the end of it.

What went wrong with it, I would say, was initially... the assessment itself was very much based on finances and I know that even - let me do the maths - 12 years on, in fact it was 2 years before that, it was 1998 when I started to apply. Because I got my grades for university in 5th year at school: I got 3 As and a B in my Highers and that was more than enough to get into university. I got my unconditional place at Stirling University and couldn't take it for 2 years because of the process to get a care and support package in place to allow me to take it. So, luckily the university agreed to a limited deferment for my place for one year so I was left kind of sttiing about thinking 'what am I going to do with this year? I've got my Highers, I've studied everything I wanted to study'. So I stayed on at school, so it was not too waste my time. Did another Higher, did a Sixth Year Studies and did modules and art and jewelry and such like to pass my time to be quite honest with you. At the end of that year the care package still wasn't sorted, and I'll explain why in a minute, and I was then left obviously, out of education. So, I thought what am I going to do?

The university further extended my unconditional offer, didn't require any further documentation or further education: they were really okay with that which was good. They held my place again, but by this point I was slightly exasperated by the process taking so long: I had done a year at school that was, to my view, slightly unnecessary, although in the end I ended up doing Modern Studies and I loved it, but that is beside the point.

The year out that I then took I then ended up working in a taxi company answering phones, for two pounds an hour, because there were no jobs where I was living at the time, and there was no public transport to be able to help me get to and from work, and there was no support to be able to support me in the workplace, so I ended up basically going around the corner to the taxi office, taking the job for two pound an hour. Which passed the year, and I enjoyed it, but I did spend a year doing things that I hadn't thought I would be doing. And the main reason for that was because there were arguments about funding, there were arguments about how much funding and what I would be eligible to receive from social care. There were arguments about who would fund it because I was moving from one local authority to another.

And there were arguments about what was an acceptable level of funding from my point of view and what I thought I needed, and what they thought that I needed. So we went through things like at one point ... now I pretty much need 24 hour care. I consider myself to be a completely independent woman because I make choices for myself, I control what happens to my life, I'm free to make those choices and to live my life in a way that other people do, and I can do it with dignity: all of the four principles of independent living. So these things to me mean that I am an independent person but I do have someone with me all the time, and I need someone with me all the time. So, this was the point that, although it wasn't as politically aware or articulate at the time, those were the sort of arguments I was making to the social worker. Now ... I was lucky, because my family were quite supportive and were quite good at being able to help me articulate what I needed. But you would need a lot of advocacy and support to be able to make the arguments that I made, I think, at the time. But, things were coming back to me like, okay, we'll need to have to go to the toilet. So, what we'll do is, we'll catheterise you and then you wouldn't need someone with you all day.

Of course at that point I was like well, that's not really what I need and and I don't think it's the safest option either, plus it's not something that I want to be contending with when I don't have to. I don't have an issue of incontinence, I need support to go to the toilet, someone to basically pull up my pants and so that's not ideal.

Then it was suggested that I would drink a certain level of liquid one day and they would measure basically what I wee'd out and then they would tell at the time they would do some calculation to figure what time it took and how long and how many times I went to the toilet so they could figure out the time slots that someone would have to help me use the toilet .

So again I said, I'm sorry, that's ridiculous and isn't, to me, acceptable. The other option was incontinence pads or incontinence pants, which again I said: No I am sorry, that still doesn't to me feel dignified and certainly doesn't suit the sort of lifestyle that I want as an 18 year old woman about to embark on a new career and make new friends. I wanted to have as much chance of being personally confident and identify with my own self-image as well and as being able to attend education, gain a degree, which you know pretty big things for most people. And so no I'm sorry, I wasn't going to be accepting sitting in incontinence pads and having them changed when it was suitable for the local authority to pop in and do so.

I have to say when challenged on this basis people would actually say, yep, actually you're right. So it's not like people were saying, "No, no, no, no. We expect you to go through this experience." It was just that the system itself offered them very limited ability to be as flexible as they required to be and I understand that, and I understand that people work within a very constricted system at times.

Which is why I think the system of self-directed of support - at the time when I started to go to Uni, it wasn't called that. It was, I think, just called Direct Payments, and also I was getting ILF at the time. Well, I was making an application for ILF at the time: Independent Living Fund. But those things started to open up a much more flexible system. What was still slightly inflexible was the way that it would be funded. Who would fund it, would it be Moray Council where I was living, would Stirling Council where I be moving to? And, I think what was agreed to in the end, was simpy that and Moray Council would fund it until I finished my degree, which is what happened.

A student social worker came on board. I went through three social workers because, some of it was because we weren't seeing eye to eye and some of it was because people were moving on. And eventually a student who was placed in the local authority came to do my assessment. Now I don't know whether it was because she was not constrained by the system because she was a student, so was a bit less likely to have to stick to the conditions that the other social workers were asked to - or whether it was because she wasn't maybe as, kind of worn down by the system, or because she was just new and fresh and quite innovative. But it worked really, really well, and the process ended up being where she basically allowed me to develop my own assessment and explain what I needed and justify everything and I understand why that needs to be done as well. And I was quite lucky because I've always been fairly articulate at things like that. So, I was able to justify why I needed then and I was able to do that within the terms and conditions in the systems that the social work department were working within. So it's easier for them, but that sort of process I think is essential for disabled people to have support to go through, and I think it is key to any flexible form of social care, that people are supported to be able to develop their own self-assessment.

And key to the outcome of that assessment: I ended up with 65 hours of support and 7 nights a week. Now the overnights were quite unique actually, because, and again another aspect of flexibility in my package, in that the person didn't sleep over with me, for two reasons. One, I didn't particularly want that, and two, because the halls of residence could only get me one place, and one bed, and therefore there was nowhere for them to sleep, and the rooms were tiny, you couldn't even fit a blow-up bed in it.

And so we had to think of a system that would allow me to have someone available overnight, that would definitely be able to put me to my bed, but that wouldn't have to do that at 7 o'clock at night or 8 o'clock at night, but could be whenever I wanted, and would be able to take me to the toilet when I needed it. So they developed the on-call system which I still use today, whereby someone is available all evening. They know they'll be called out, so it's not an on-call on a kind of maybe basis, it's a definite that you will be called out, but it will any time tonight: so it could be five in the morning it could be a eight o'clock at night and, it could be four or five times a night, although it was very rarely ever more than two.

And that system worked really, really really well and provided me with lots and lots of support to be able to do exactly what I needed to do: it allowed me to make the friends that I wanted, allowed me to study at the wee hours of the morning, you know before your essay is due at nine o'clock the next day in the way that any student should be able to do. And what was key to that outcome of that package of support was that it supported my choice and control: it allowed me to make the choices other people would make. You know, no I'm not going to go here I'm going to go there, because the package was flexible enough to allow that to happen, but it wasn't flexible to the point of being wasteful where people would be sitting about or anything. I mean my care package every minute of it was always used, but it was so flexible that it meant I could live my life in the way that I wanted to: in the way that non-disabled people can and disabled people should be able to in an equal society that respects their human rights.

And so that's why I fundamentally believe - and I suppose it wasn't until later when I gained my degree and got the opportunity to work with the disability movement and the independent living movement - that I realised the political and the politicised relevance of those decisions and that process. And I understand now very much that it is about being able to be free and to do the things that other people want to do. And that when we talk about control in disabled people's lives, it's not just about controlling who and what and how much. It's actually about not being subject to the control of external barriers. So for example, if I want to travel to Edinburgh today by bus and there's only 3 accessible buses (that's not true - there' s quite a few probably, but for talking's sake, if that was the case) the control at which time I will travel is taken outwith my hands. And that's not something that anybody else in society has to experience or endure, outwith the constraints of the public transport system for example, but there are additional constraints that disabled people face. And that's why self-directed support and independent living are so interconnected.

Independent living for me when I was younger, when I was going through this whole assessment process - I was being assessed by social workers and OTs and such like. I was always told it'll be about. 'You'll be able to put your socks on yourself. Get this piece of plastic and a bit of rope, and put your socks on on your own, and you'll be perfect, and that'll be you!' And I remember thinking, 'That is not, surely that's not what independent living is about.' I was late for classes because it took me that long to put my socks on, and it wasn't until I left home, went to Uni, got my degree and then started to work and work with other disabled people, and get the peer support from those people, and become part of a movement of people that I realised that that isn't what independent living is: it's about being free to be able to do what you want, as other people do within obviously with the constraints of a civilized society. And, do that with freedom of choice, dignity, and control. And Self Directed Support has been an essential step towards that for disabled people. But it could only be that essential step, part of that journey, if it is considered to be part of a process where the end point is independent living where disabled people can live their in the way that they want to and in the way that other people take for granted.

If it's seen as a means to an end, so, for example, somebody gets 10 hours of support provided by a day center, but nobody can direct where to buy that. That in itself is a step in the right direction but it's not the full story. It still doesn't give that person access to exactly what it means to be independent and to enjoy the same human rights as other non-disabled people in society do.

And so I suppose the most important thing for me and for the organisation that I work for - Independent Living in Scotland - and for many people in the independent living movement, is that self directed support is seen as one tool in many, that support the process of independent living and disabled people being able to participate as full and equal citizens in our society.