Transcript: A collaborative consultation on the draft statutory guidance for self-directed support in Scotland

Podcast Episode: A collaborative consultation on the draft statutory guidance for self-directed support in Scotland

What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.

MD - Michelle Drumm
KF - Kate Fearnley
DM - Donald Macaskill
RC - Roy Campbell
SR - Scott Reid
DMD - Donna McDowell
MH - Mark Paul Howard
KD - Kate Dowling
YM - Yvonne McLees
LM - Lesley McLaren

MD A consultation event on the draft statutory guidance for Self-Directed Support in Scotland was held on 6th June 2013 at the Carnegie Conference Centre in Dunfermline. It brought together providers of services and users and carers to discuss the various parts of the guidance and give their views on it. These views would then be collated into a report which will be presented to Scottish Government. Iriss.fm attended to capture some of the attendees views. Kate Fearnley, Deputy Chief Executive of Alzheimer Scotland and Donald Macaskill, Scottish Care’s Lead for People as Partners told us more about why the event was organised, the structure of the day and what the event aimed to achieve.

KF It has been organised to bring together both providers and people who use social care services to look at the guidance and regulations for the new Self-Directed Support Act which comes into effect next year and make sure they work basically and comment on that to the government and really have some joint feedback that can be a powerful influence on the way that the guidance goes forward. I mean historically we have had a long history in Scotland of theoretically having direct payments and the option to direct your own support there in the legislation, but it hasn’t been used very much at all - certain groups haven’t had access to it at all, people with dementia have barely been able to use it. (… unclear) Scotland piloted using Self-Directed Support for people with dementia very successfully and now we are doing more of that work, but that is still kind of scratching the surface - we need people to actually be offered those options right from the start as the access that they should be.

DM This event is one of the few opportunities where people who use services and those who support them can come together with organisations who provide services and can say something to government and our elected members about what we would like to see in the guidance and the regulations around Self-Directed Support. We don’t often come together - this might actually be a unique event - and this is an opportunity for us to let our voice be heard, and for us to put to government the issues of importance and the concerns, as well as the opportunities we see in the Act. The day isn’t one of those conferences where you come to and you get talked at all day - today has been an opportunity for people to do the talking themselves, to share their ideas, to express their vision of what they hope Self-Directed Support will be for them and for their family members from next April. So the structure of the day has been that we have divided the day into 3 sections and on each hour individuals have had the opportunity to choose a theme, of which there are 9 to look at, and each theme is facilitated by an individual who knows a little bit about the subject, but whose real role is to help people think about what is in the guidance and regulations, what do they like, but also what would they like to see improved, changed or added. We are looking at issues to do with carers. Another theme is looking at issues relating to children and young people. I have been specifically, myself, looking at a theme about those who are going to be excluded under the present regulations from accessing a direct payment - and that would include individuals moving into residential care, or residential care with nursing. It would include individuals who are known to the criminal justice system because of a detention order and it would include individuals fleeing domestic abuse and violence, as well as individuals who are homeless under the Homeless Act. So what we have been doing is looking at why should there be these exclusions and what could we do if there weren’t those exclusions to enable individuals to take greater control over their own lives and the support which they need in order to progress. Other themes include looking at the monitoring and evaluation of a support package, there is another group looking at the 4 options which are in the bill and how those can be properly explained and understood for each individual who might access services. Yet another group is looking at the whole idea of circles of support, and they have been working closely with the tables which have been looking at capacity - how do you support an individual who might lack legal capacity, but nevertheless still wants to be involved and engaged in making decisions around the service which they want in their life - and much more importantly, about the life that they want, because Self-Directed Support, and this has come through throughout today, isn’t just about the options and about getting a service, but about getting a life. And the last of the groups has been looking at the whole process of assessment and knowing what to do - and that has been a discussion around human rights, about information, about communication.

I think what we would like to see is that first of all the concerns and issues of people are heard and raised, and so we are writing a report based on the statements and comments that people have made, and we are hoping that as many organisations who have been involved today, and as many individuals as possible will be able to sign up to that report - and then we are going to present that to government at the end of the consultation and it will provide hopefully for government an indication of the feelings, the views and the perspectives on Self-Directed Support, because Self-Directed Support as an Act will not work without the influence of those who use services and without the ability and desire of those who provide services to reshape those for the future.

MD Roy Campbell from Fair Deal tells us a bit more about the work that he is involved in, why he attended the consultation, as well as a summary of the discussions he took part in.

RC Fair Deal, we’re a sort of medium sized charitable organisation, known as a social enterprise within the south side … well we are based in the south side of Glasgow but we operate through Glasgow. We started in 1989 as a response to parents of people who were in Lennox Castle and they were looking at closing down Lennox Castle and people coming out into the community. And we have grown to strength from there.

We are here to take part in the conference - I’ve come along as a scribe, but we also have obviously an interest in the Self-Directed Support. We know that the Act is out - our main interest is how that can be implemented and what it means in terms of the services and support that we provide. We were looking at SDS options - there are the 4 different options that people can choose from in the Act in terms of managing their own budget. We are looking at, for instance, Option 1 which is where people have a direct payment and that direct payment is paid to them, they then need to organise the support and the services that they would want to have - based on their budget, and they can go to other agencies or bring in staff and find ways to provide the support that they are after. One of the main ones is although having your own budget might be more flexible and you have got control over that, it is a sort of risky strategy in a way as well, because the support that you put in - you are then the person who is going to be responsible for that. So you might actually become an employer where you have to pay wages and look at whether a person is insured and they have the appropriate training to provide the services that you are after. And that might be a contrast between maybe somebody who would stay with a local authority to provide those services - and therefore it might be safer - but if you look after your own budget you might get more for your money - whereas the safe option might be that you would get maybe less, but safe and consistent. So there is a sort of risk that we are looking in providing your own budget.

Also we were looking at the - do people become excluded because if they don’t have the acumen and the capacity to look after their own budget - a person might be elderly and looking after their children - have they got the ability and the strength and the capacity to provide those services? So people have got those decisions to really work out for themselves.

They can also choose to maybe get a third part to then help them to manage budgets, but again we are looking at maybe … you know, one of the elements that came out the group was that you have got cost considerations there as well. So while you have good choices, there is the element of working out how that budget would translate out into actual hours of service and flexibility and what you would get from it.

I love the language of it - I love the language of the Act and how it does really focus on the individual, about the person, it’s been person-centred. A worry at the background about how this is going to tease out in the long-term - I think there are a lot of things missing. We need maybe guidance and more information about the implementation of the Act - what happens if things go wrong? Somebody sets themselves up as being their own manager of provision and then that goes pear-shaped - can they quickly go back into getting a provision from the local authority? The Act is really nice in terms of the actual implementation of it - can we keep working with people to get the good service that they are needing in terms of changeable circumstances.

MD Donna McDowell and Larry Watt who use the services of Fair Deal gave us an insight into their lives and the differences that Self-Directed Support services has made for them.

DMD Yes, I am a client of Fair Deal - I was actually the first young person to be in Fair Deal. When I was 16 years old, I was still at school at the time and I got my own tenancy from the social work department and all that. my name is Donna McDowell and I am 19 years old and I have been through a lot from I was like 2 years old and I still am going through quite a bit with Fair Deal, but I have come on massive compared to the past. I was letting them know about like social works - we were talking about like the social workers and the choices people have. And me, myself, as a young person, I still am a young person - was explaining to them how scary it is for a young person and how hard it is, and I explained to them like when I was in foster care - I have been in foster care from I was 2 years old - and when I was under Child Services, they made the choices for me - I didn’t get a say, my choice - even though, by right I should have got a say. And I had a Children’s Rights Officer who had to speak up for me, I have psychiatrists, everything. I had also used an example when I was younger I basically got medication shoved down my throat because I was too bubbly, I was too hyper and they couldn’t cope with me. And social workers put me to places that couldn’t cope with me at all. When I have came to Fair Deal and I was 24/7 support - it has been cut from 24/7 support to 49 hours now, and that was at my discretion, and it still is getting cut, and I hope it gets cut even more. And again, it’s at my discretion.

Well if it wasn’t for Fair Deal I would be gone, I wouldn’t be here right now, I would actually be dead, to be honest with you. They have got me into college, they have social measures activities, they are a charity organisation, but also people that help people with disabilities. I was the first young person to come that they ever dealt with, so like I was basically a trial and error type of one - there wasn’t a mistake made, but then they fix it, and now they know how to do it.

When I was I was in (… unclear) I didn’t get a say basically, I was just there - that’s the way I felt, I was petrified. And the other thing we were talking about, I had explained like if it had been taught about bills and how to run my own house and that when I was younger, see if they taught me earlier on I would have known what a bill was - I didn’t know what a bill was … at 16 years old I didn’t know what a bill was.

I’m a service user and now I have got learning disabilities, dyslexia, and I went with Fair Deal - was it this year? Came this year, picked up a lot - like some cannae read and write - but I’m going to start doing it.

MD So what kind of things are you doing then that you wouldn’t have done before maybe?

Donna McDowell I have been to drama, I have been to games day, I have been trips, football, SVQ at Level 1, 2, 3 in Cooking I have done, SVQ in Computers, volunteering.

With Fair Deal I get 6 hours a week support, I don’t need a lot of support because most of the things I can do myself. I always need somebody there if I am wanting to go out on a Saturday, I go out on Saturday to the ten pin bowling, we go to the pictures on a Sunday and drama on a Tuesday and a Thursday we go to a games day.

MD Iriss.fm also spoke to Mark Paul Howard from Equals Advocacy, an independent advocacy agency for over 65’s who highlights some of the issues around advocacy.

MH Obviously there is an ageing population - we are supporting a lot more people. With the government’s kind of Reshaping Care Agenda, a lot more older people are living in the community and Self-Directed Support is an avenue that we are pursuing with older people to make sure that they have got the services and stuff that enable them to live safely and as part of their community.

The first discussion group we were involved in was Support and Assessment - it was quite interesting, a lot of good stories from different parts of the country and how people are kind of using their Self-Directed Support budgets together, as opposed to as an individual budget. There has been a few cases where people have kind of pooled their budget together and used it to start up a service that other people can use. I think in general the 2 discussion groups I have been in, they have kind of said that the guidance is quite vague and it’s open to the interpretation of the local authority - there are 32 local authorities with numerous staff, so it is going to be interpreted differently, which I think the concern was that it would be a kind of postcode lottery, Self-Directed Support, as opposed to people being able to access it regardless. I think the quote that one of the ladies used was that “it should have just been a Stalinist approach and the government should just say “this is Self-Directed Support and this is how every local authority should do it”, to stop that - but obviously that is not the case, it is up to the local authority.

We looked at making sure that advocacy was part of the assessment process and giving individuals the right to independent advocacy - although it is not stated in the legislation, it is in the guidelines. Most local authorities have an advocacy service and we would be hopeful that they would use that service as part of the assessment process for Self-Directed Support, particularly the self-assessment when people are having their say to identify their own outcomes. Sometimes that can be influenced by family and other professional staff. So advocacy is there basically to safeguard the person and speak up for them, and make sure that what is in their support plan and what is in their identified outcomes are actually outcomes that they have identified for themselves.

MD And is that currently in the guidance, support for advocacy, or not?

MH It is mentioned, but it is mentioned kind of sporadically throughout the guidance and it depends what area of the guidance you look at as to whether it is there or not. Having a look through the carers section, it is not mentioned in that, but there are plenty carer’s organisations out there who provide a carers advocacy service. It is not included in that. It is kind of highlighted in bits, but it is too vague - they don’t … not that we would want to force people to refer to advocacy, but it is not forceful enough to suggest that this is something that people should really, really consider - it is almost an afterthought.

I would like to see certainly advocacy included throughout the legislation and throughout the guidance and encourage local authorities to be more aware of it and use it. Is a service that is there - it is free, it is independent and it puts … in line with the ethos of Self-Directed Support, it puts the person in the middle of it, and we are there to support the person to have their views and wishes put forward in relation to the care that they want to receive, without being fearful of having any external influence placed on the person.

MD Kate Dowling, Iriss Associate on the Pilotlight Project, gave some insight into what emerged from discussions on the SDS options, some of the issues involved and the future potential for Self-Directed Support.

KD A lot of discussion around the role of user support organisations and the importance of advocacy throughout the sort of managing money element of Self-Directed Support. One thing from my work that I have done in Pilotlight I particularly was focusing on was the user support organisation lead that has been provided - where we have seen some really effective intervention happening already for people accessing the four options. I think perhaps the guidance doesn’t make it clear enough the importance of engaging with advocacy early on and with user support organisations. Certainly up front in the guidance there is a table of roles and responsibilities, and those two fundamental groups aren’t included in that, which we talked about in the Capacity group as well. So yes, that came up in the options discussion as well. We also had somebody from a health background at the table, which was very interesting, when we were discussing the implications around health and safety within employing people - and actually the guidance doesn’t necessarily discuss the importance of making sure you use proper hoist material, all this stuff, and actually the guidance doesn’t make it clear that when you are employing somebody, all of those legislations and health prevention structures are still there, but perhaps they are not firm enough in the guidance that they should be referred to.

Through the work that we have done in Pilotlight I can really see the huge potential with Self-Directed Support for people. It’s an exciting opportunity and I think, as people who are helping to sort of put this into place, we have got to encourage people to pursue interests and harness their talents through Self-Directed Support, and I think we need to put the sort of support structures in place to help people do that - I think it is a very exciting potential.

MD Yvonne McLees from Youth Work Advocacy in Paisley says why she attended the event and highlights issues around exclusions.

YM I am very interested in Self-Directed Support, particularly interested in the people that are going to be excluded from it, as we are a charity and we work with the most vulnerable people in our area, and I think a lot of the exclusions are going to affect them.

We were talking particularly about people who are going to be excluded from being able to access Self-Directed Support, and I am really interested in that, as is my organisation, because a lot of these people are people that are our client base. I don’t think that they have really thought about, when they have made the exclusions - the exclusions are far too broad, and I think they have to look a bit more … they have to look at people … Self-Directed Support is all about individualisation, and I don’t think they have looked at it as people being individuals, and they have just put blanket exclusions across certain groups of people, which I think is really quite discriminatory.

What we talked about today and what we put forward was that people should not be excluded on the basis that they have a particular difficulty - they should all be looked at individually, because some people within that category may well be able to access and work well with Self-Directed Support. You can’t just put a blanket opinion that everybody in these categories isn’t going to be able to manage. So we think with really good support and monitoring, most people should be able to manage and should be given that opportunity.

MD Lesley McLaren, Family Support Coordinator and Self-Directed Development Worker for PAMIS offered her views on Self-Directed Support and the guidance, especially for those with profound multiple learning disabilities.

LM PAMIS are working together with other organisations for the joint response to the guidelines that have just come out, and we think it is just really good to get together and find out what other organisations feel and other sort of groups that we don’t tend to mix with very much - get everybody else’s points of views - because, as I say, we just really focus on profound and multiple learning disabilities. So it’s great to hear everybody else’s perspective.

Self-Directed Support I think will be fabulous for some people, it won’t be for others - and I think that will come down to a couple of things. I think it will depend what local authority you are in, and I think it will surround what type of package you will need. Obviously our folk who we support will need quite complex packages because of their complex support needs, and that can be through social needs and their healthcare needs. So if everything comes together, everybody works collaboratively, co-productively, the way it is supposed to work, it should be fine. But we will wait and see what happens. But in theory, brilliant ideas, but we will just see in practice how it actually pans out over the next few years.

The guidance should assist, you would hope so. I think there is spaces, I think there are gaps, and hopefully that will be addressed today. PAMIS will definitely be responding that way as well, and if things are put in place, especially to protect folk with profound and multiple learning disabilities - if you cover that group, you are really covering every group, in my opinion. So I think guidance will go a long way, probably in my opinion, it could be a bit stronger.

I think everything it says in the Act and the guidance is fantastic, and how people should have choice, freedom - but to have true choice things have to be put in place, again especially for our folk. I mean their support packages are so complex at times, the choice is actually very limited. To give an example, things like maybe employing a personal assistant - a personal assistant for somebody with a profound and multiple learning disability has to know so much, has to be highly trained, has to deal with some real complex healthcare needs. People have trachi’s, they will be maybe peg fed, gastrostomy tubes, tube fed, take lots of different medications, moving and handling, postural management - there is a whole range of things that they have to know about, but you don’t get that for £8.20 an hour or whatever, and it sounds horrible, but you just don’t get that high level of carer that you really need to support somebody with a profound and multiple learning disability. So I don’t know whether that is where our guys will miss out - I think employing a personal assistant will be very difficult for some of our people, and that takes away one of the choices, one of the four choices in SDS.

MD The final interview was with Scott Reid from ARC Scotland who spoke more specifically about SDS guidance provisions for children and young people.

SR The discussion that we are involved in today was the discussions around children and families and the SDS guidance that accompanies that. So we have covered the whole of the SDS guidance from the view from children and young people and how this might influence their pathway, if you like, or the process of moving into kind of young adulthood and what that might look like when reflected into adult services.

There was a lot of discussion around eligibility criteria, especially when the guidance seems very set up for adult care and then you have got the children and families section. I would rather see it as a kind of process or pathway when you are talking about different areas, as a co-joins kind of process. For instance in the Circles of Support section there is very much conversation around the Adults with Incapacity Acts and how important that is, but obviously as a child and young person you aren’t really … you are not influenced with the Adult with Incapacity Act at all - so what would a Circle of Support look like and how would that influence decision making for children and young people and their families when there are other issues around age of consent that is kind of not even mentioned. Other issues, the majority are around kind of the language and what they mean by a conversation and the lack of pathway. A lot of discussion around eligibility criteria and how that, in universal services and children and young people services, are a lot different and probably better funded per head, if you like, than they are in adult services. So you are going to have people with a Self-Directed Support package leaving children’s services, who are funded under a moderate kind of framework of criteria potentially as a child in need, moving into an adult service situation, and that funding, because the eligibility criteria is set at a different level, might not meet all the needs that they need and what that might look like.

There is a lot of hope that Self-Directed Support principles behind it, the principles and values - if embedded early enough and the kind of early intervention has happened, the need for more extensive critical needs led services would be reduced, because people are very used to moderating their own kind of needs along the pathway and process. So that kind of early start with SDS or Self-Directed Support is vital to help people enable them to kind of manage their own life as they kind of grow older - especially people with profound and multiple learning disabilities, whose eligibility isn’t really going to change - it is actually going to become a little bit more complicated as they leave kind of universal services - and around looked after children and what that might look like for somebody who is in residential care. Will it be possible for somebody to have an introduction to Self-Directed Support quite early to help them manage things when they move into their residency, potentially at 16 … and we heard a story, that was a brilliant story from a young lady called Donna, who was very much a looked after child, and then when she turned 16 she was straight into adult world, if you like, and she didn’t even know what a bill was.

All in all, a really, really interesting kind of discussion was had. We had quite a good mix of people - we had like an NHS representative, we had a lawyer, which is really cool, we had somebody from a local authority, we had somebody representing the voluntary sector and kind of service users. But what was really good was to hear the stories that were coming from users of services and then relating the guidance to that kind of way of thinking.

There was one little bit of concern around the Duty of Care Waiver, and it was suggested that faced with a Duty of Care Waiver, how do we know that people are kind of actually looking at things suitably and adequately, and what that suitable and adequate might mean for different professionals with different moral potential values? And there was a bit of worry around the more maverick kind of creative ideas might not be deemed by some social workers as suitable or adequate. So there was discussion about setting up a kind of … not a moral panel - sounds a bit wrong - but a kind of panel situation where people would kind of sit and judge if these were suitable and adequate kind of duties of the care (… unclear). But that panel would be a little bit like the Children’s Panel, and it wouldn’t just be professionals, it would be people like artists or musicians or laymen or whoever, that would say “actually, do you know, why not?” and it looks at trying to address that balance of risk enablement and risk management.

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