Transcript: Taking the first steps with self-directed support

Podcast Episode: Taking the first steps with self-directed support

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.

KE - Keith Etherington
BA - Bill Alexander

KE Taking The First Steps started from the idea that there had been relatively little work done in Scotland with children, young people and families, as well as with local authorities and provider organisations, so we were trying to work out ways that people could be involved in directing their own support. And Taking the First Steps was designed to help people go through the process of Self Direct Support in a way that was safe and not risky for anyone, for people themselves, for families and for local authorities.

Essentially in Taking the First Steps the number of children and families, several areas were offered the opportunity, with support to direct a small financial resource, and we fixed that at £200 over the summer school holidays, and to use it in a way that was going to have the most impact and the best effect for them and their families. So initially In Control Scotland contacted several local authorities, usually where we already had good working relationships, with the offer about getting involved in Taking The First Steps and identifying the support that we could provide in that process, and really what we were looking for at that stage was commitment, ideally enthusiasm, but definitely commitment and actually the belief that this was something they were wanting to do. We did get quite a few areas coming back to talk to us about that, but in the end, there were 3 areas that said yes they would like to get involved in taking the first steps and that was Highland, West Dunbartonshire and North Lanarkshire. Each authority quite different and at different stages in their own implementation of self directed support generally, but all keen to work in partnership with In Control Scotland and the other partners involved in the process to see how it could work for children and families. So Iriss got involved to record some of the family experiences and between May and September 2012 were following the families, not literally but at different events, taking part and recording their experience at each step of the way. So in this programme you will be hearing directly from people involved in Taking The First Steps, some of the sound recordings do vary in quality because they were taken in different halls and different locations with a variety of background noises.

So the first thing was that each of the local authorities developed their own processes and priorities for contacting families in their local area, and what they were trying to do was identify a small number of families who would like to, or at least in the initial stages, be interested in thinking about the Taking The First Steps process. As you’d expect initial responses by the proposed project by families were varied and not all of them were positive, some parents were understandably wary or cautious and ambiguous about getting involved, for example thinking about it might be a lot of work, have we got time for this, or is there some catch to this, why are we being offered some additional funding? Whereas others were sort of eager to get started, but in the end, all were really keen on the opportunity to try something different with the idea of a small amount of money at a time of the year when stresses and strains of family life are probably the greatest over the summer school holidays.

“With regards to this project, I think it’s fantastic for them because it’s taken me a year and a half on the waiting list of trying to access services for Adam, if I had this money myself I could have support there for Adam straight away, which would be even better.”

“Holding the money and for me to go and resource everything, that’s the scary bit, but I know that the money that social work is paying the now for Katie’s care, I know that I could probably make that go a lot further and use it for more things that would benefit Katie and the rest of the family.”

“So they give you funding, but you get a choice to use what your funding is for, it’s not me, it’s not anyone else, and I thought, well that’s great because no-one understands my child like I do, and I know what’s best, the best way that this would benefit her and how to make her have more happy days.”

“It would only be good if it’s not a way to cut money in services, as long as you are getting the value that you need because if you get a carer from the council and it costs so much, but then if you’re employing a different carer, you might not be able to get as many hours, but it would be more flexible, so it’s got its good points and its bad points, but I think the flexibility has got to be a good thing.”

“Doing it this way, the ball’s in our court, so to speak, we’ve got more of a say, a choice … more involvement with Social Work as well … aye, do you know what I mean, and what happens and what you are wanting to do, and as I say obviously either your social worker helps you, but it’s more down to you instead of the social work saying, right well … we’ve got a limited amount, this is why we couldn’t give you your … and if you are doing your homework, do you know what I mean, and you can get more for your money, you can do a lot more, you can do it in your own time, do you know what I mean, it’s … and that’s a big advantage as well.”

“I just got a phone call from the social worker which I have just got in tow with, and asked me if I would come here and see about taking the money and doing something different with it, which I found quite challenging as well as rewarding to do something that we wanted to do, and not just something that you were getting given and getting directed to do as you were told, as such, it gives you a lot of freedom.”

“I thought oh no, I thought, oh my goodness no, this is more strained for us to try and find something for you to do. We struggle so much to find anything for Rebecca in Inverness, activities that she’s included in, and the thought of having to try and work all these things out, it kind of just filled us with dread, although very thankful to be offered that chance, but it just was extra pressure for us actually.”

“I was a bit apprehensive to start off with and thought, well is this another thing, another trial that’s not really going to change anything?”

“So when this came along it just sounds so simple, but so perfect.”

So taking responsibility for planning and organising the budget and how it’s spent can actually sound quite daunting, that’s why we thought it would be a good idea if families got started and could test this out with that idea of a small budget at first - £200 over the summer - to get used to how directing their own support and self directed support might feel and work for them. We built in an opportunity for families to think about how they might spend the budget, where they could plan together, so often families got together in small groups, not everybody did this, but several in each of the locations did this, got together in small groups to plan and think together. And families planned carefully what they were going to do with the money and often made sure that there was a plan B or in some cases even a plan C. When families started to plan and think about what they would do with the money, it became quite clear that lots of the families, especially those with young children, wanted to spend some of their budget at least on family time together, doing fun things that would help them reconnect and enjoy time together over the summer. So let’s hear from some of those families.

“The holidays are a terrible time, we have got so many hours to fill up and I feel it takes pressure on us as a family over the school summer holidays. I feel most of the time we try to keep the child with a disability happy, whereas now with this budget I can take friends along which helps support my daughter and I can still spend some time on the same activity with my son, who I feel has been left out.”

“Recently my husband has been taking my child with the disability and I have been taking the 3 younger children, so we have not really been doing anything as a family, whereas this is something that the whole family enjoys, especially my son: the wilder the ride the happier he is, so it just means we’re spending time as a family.”

“I think for us as a family we were hoping to achieve to be able to have the freedom of what activities my children would participate in, and you have not got the pressures of having to stick to social works times and rules. Us as a family can do things as and when it suits us.”

“It has given us a bit of a lifeline that we know we can maybe go away for a few days, or 1 day out of every week, it is going to free things up and let us do things as a family, and bond over the summer period. Because I have got a child with a disability, everything seems to focus on Ben, day in, day out, week in, week out and you feel as if other family members suffer. So to me it’s a good time for us to spend time as a family, get to, you know, get together with each others feelings again and for it to open up and get close again, it does mean a lot to me and a lot to my family because I feel as if things keep getting put on the back burner.”

“Well my first idea was that I would decide, but we decided to call it our summer project and the kids had a choice in what they done, which was good, because obviously with the budget I knew my restrictions and I know how far we could push the boat out, so they had choices which we worked around about. Obviously they couldn’t do everything they wanted to do, but it took a lot of pressure off being asked to go somewhere and being told no.”

“It really opened our eyes to what’s out there for our kids, know what I mean … whereas we thought … what is there to do? Aye, there was like limited things that was out there for Sheridan, whereas coming here you realise there’s so much more out there that she can do, do you know that I mean, and that we can do it as a family, and I think … think that’s the most important thing for us, something we can do as a family, do you know what I mean, that we are all in it together?”

“The responsibility, as much as it’s done, you know I felt it wasn’t so intense as what it’s been in previous years, and the budget certainly did help, it really helped to relax the summer holiday and you having to stress about things, plus as well as I say, it’s a learning curve for me and a learning curve for Lewis and kind of pushing our boundaries and parameters a wee bit more, so … and also do a wee bit of teambuilding between the family, which was really, really good.”

“It transformed my summer, I am not saying that summer holidays were easy by any stretch of the imagination, but the £200 budget that we were given enabled us to do different activities with my disabled son, Gregor, something that we wouldn’t have been able to do otherwise, and it also gave freedom to my 2 teenage daughters to be able to go off and do what they want.”

It’s amazing to hear that such a small amount of money, just £200, had such a big impact for lots of the families involved. It’s clearly not all about the money though, just having the chance to think and talk and plan with others about what made most sense to you and your family, made a big difference to lots of the people involved. Another clear outcome for families was that they felt in control of how the resource was used, and people did lots of different things, for example some people wanted to help strengthen relationships or make new connections, others tried out activities where they could be more independent and some did things that helped them to stay fit and healthy or even become fit and healthy.

“Next month I am going to be 8 months pregnant, so the money is going to come in really good for my son, so I can buy services for him to go out and be able to do stuff, like I have looked into a drama school for a week, and activities like that. I can give his befriend the money to go out and do activities, like to go to M&D’s and stuff like that, that I wouldn’t be able to do myself.”

“Well the big thing this year for Stuart going into 4th year and the fact that he’s leaving at the end of 4th year was independent travel, and I used the money that he went with his friend to the pictures on the bus, his friend was more capable, but as far as going to the pictures and the Laser-Quest, that was his idea and it was his idea that he went with a friend rather than his Dad, and I thought it was a good idea because it gave him a bit of independence. He could use, for the first time, his card on the bus, he knew how to use it. Since the self direct payment, he’s been going with his friend to Clydebank and he’s now … from that he’s now not using the school bus anymore, he’s using public transport to get to school and this is a great achievement for him as it’s something he’s always wanted …”

“She was a lot more calmer, it helped her to release her frustrations and things like that as well, her anxiety levels seemed to come down a bit and that just continued throughout the summer holidays, and still today when she comes in from school, like I say she’s been having some issues about keeping her clothes on, she’s stripping off her clothes quite a lot, so this is encouraging her to keep her clothes on because she is going back out into the garden, so that’s been a positive. The sleep has been a positive, her sleeping better at night and the medication that she’s on, there is a side effect of weight gain with it, so the exercise of climbing up the chute and going down it and carrying it on and running around the chute, just different, playing tag with her little sister, that’s all helping the weight gain … keep her weight at a good level, so that she’s not gaining weight too quickly because she’s getting more access to the exercise. And also playing on the chute with her little sister, we are trying to introduce her that she has to wait her turn, she can’t just push her little sister off and that’s all helping out, so when she does go to other parks,… she’ll maybe pick this up and start remembering she can’t just push the child in front of her, she has to wait her turn really. So it has made a lot of good positives in the summer holidays and it will continue, because it is something that she is going to have permanently: it’s not something we have just hired and she’s going to have it for a few weeks, it’s something that she’s always going to have, so it’s been great for us.”

“It really made me realise, the £200, that it is a heck of a lot of organising, but I did feel in control and I didn’t feel railroaded into something that I didn’t want to do, that didn’t suit my needs. I definitely felt this element of independence and I realised that because of the kind of search for … that I am in with services at the moment and how it’s not really been very kind of tailor made to my needs, I found that, you know, self directed support will play a vital part on how to improve my future really and give me the opportunity to spread my wings and have my own control.”

“It didn’t make a vast difference to her summer, but the things that Lucy has are going to be lasting, they’re investments, so they are moving on. It didn’t matter, it wasn’t something only for the summer.”

There’s pride and optimism in the voices that we have just heard and it’s clear that many families have had a summer that worked better for them than it would have done without Taking The First Steps. We have already heard from some families about what they spent their budget on, the only thing people needed to bear in mind was that the way they spent the money needed to be legal and to meet the outcomes that had been agreed in relation to their child and their family. Let’s listen to more of the families describing what they spent their money on.

“Well what we did with it was make sure it went to different avenues of things that could keep Alexander’s routines and activities going through the summer, so for example we do horse riding for the disabled for him and that was something we could continue, we’d give a donation to them every so often and we could continue that through the summer and you can just see the progress he has made over the summer, otherwise if he had had a 6 week break away from that, you know we’d have really seen it. We do music therapy with him, a music therapist comes to the house and again that was something I could continue doing through the summer to make sure that he was able to carry that on and he knows what’s coming next. He could also then attend nursery, but that is very expensive because he requires 1 to 1 support at all times, it’s £12 an hour for him, so he was able to attend the nursery for 8 mornings over the course of the summer holidays, which doesn’t seem like a lot, but that was sort of costing about £400 anyway.”

“We ended up buying a tent and all the camping gear and we went to Roseisle Beach for the weekend, my and my fiancee, because we thought it would be good to build up a relationship, get away from routine and strengthen our relationship.”

“We used the money to buy an I-Pad, so it was quite a big expense for us and Ross put some of his own money towards that. Ross is often at times housebound or unable to take part in activities. He’s home schooled, so he’s very isolated from his peer group, so the idea behind the I-Pad was to connect him with peer group friends and family through social networking sites, through Skype and it was a really valuable communication tool for him when he was isolated from everybody else.”

“Yes at first they thought it was going to be a never ending pot of gold but they soon understood that although it was great to have the small budget, the small budget could have gone on a couple of day trips, so our plan every morning was to look and see what we could do for a certain amount of money, so that added to the fun and the experience and it obviously taught them that they do have a budget in life, whether it be big or small, they still obviously have to work around it.”

“What I would have normally done is maybe take them to the pictures once a month, because it’s not only the pictures, the pictures leads onto McDonald’s and leads onto, can I get, can I get? So I used the money for a few outings to the pictures and it was their faces when they said maybe the next week, can we go to the pictures and I would say, yes okay, what picture would you like to see, it’s your choice this week and your brother’s choice the next time, so it was the fact they had choices and they weren’t getting told no as much as what every day of the week we say no to them. I mean they still know that they can’t get everything but it was great to be able to break up a week to do something each week and they looked forward to being able to do it.”

“We thought of going to the Landmark park but unfortunately that wasn’t very accessible, so we went back to the drawing board and thought, yes we will go to the Highland Wildlife Park, and that was just brilliant, just people who understood you and just understood how much, what affected wheelchairs and what didn’t and it was just brilliant … it was nice to get out and do things as a family for a change.”

“The majority of it I used it on like fuel money for our car, we have got a mobility car so … but the price of fuel, you know, you don’t have to do things that cost a fortune, you know: a day at the beach to get some ice creams and a picnic doesn’t have to cost a lot of money and things, so yes … if you think about it, there are things that you can do that doesn’t have to cost a fortune.”

“Us with the horse riding, I am just really pleased that we stuck with it, we went with it and we have all had a bit of fun from it, do you know what I mean, especially the other 2 children as well, they were feeling like a bit left out and it’s been really beneficial for Sheridan because it’s helping with her muscles, like her walking do you know what I mean, so when you are seeing that your child is benefiting from something like that, well why not keep it going, do you know what I mean, like the funding was there so that’s how we just … and like we are going to keep it going ourselves because you are noticing like a difference.”

As we heard there, not all plans come together as originally envisaged, but the families found ways to handle the situations without the need for direction or extra support from the local authorities. In fact one of the local authority workers commented specifically that they had been amazed how few times they had been contacted by one of the families involved during the summer. Some of the benefits of Taking The First Steps weren’t about money or planning or being in control, but just about parents getting together with others in the same boat. Many families helped each other when they met on the project groups and this sharing of new and often local knowledge helped bring further benefit to the summer activities, and sometimes even lasting friendships.

“Although my initial plan A worked well for Kimberley, to have the plan B and the plan C, like you say we heard some of the other families sometimes that everything doesn’t work out the way that you plan it and I think that was a good thing, because I wouldn’t really have planned the plan B or a plan C if I wasn’t in the group and we were encouraged to do that and hearing how other people sometimes their plan A didn’t work as planned so they had to move on. I think really all that helped. And hearing other people’s stories and what they have accessed and if the opportunity came up again, it gives you more ideas of what you can access it for.”

“The most information we have got is from coming to this group, do you know what I mean, and I think it’s going to help us more.”

It’s clear that bringing people together has had a significant impact on not only the activities that the families undertook over the summer but also what they are going to continue to do afterwards. We asked all the families what the impact of the demonstration project has been and what they envisage other families would enjoy from directing the support for their child. Let’s hear again from some of them.

“If you’ve got control of like who you get in as carers, because sometimes the ones that were coming in before weren’t very good and if you were able to kind of hand pick someone that was particularly good with your child, that would make a big difference.”

“The holidays are the tricky things for us at the moment, and weekends, so using the budget for how we want to, rather than relying on other people to come. We just realised that that was going to be the way forward and the new approach, from what I have heard, about sort of trying to minimise the paperwork and making it a lot easier, would obviously be a welcome change for us as we go into this new phase, because Alexander is only 4, so that we have obviously got a long, long time to plan ahead for him.”

“Coming to this group, I mean if we hadn’t, do you know what I mean, probably another summer would have went by where Sheridan wasn’t doing nothing, do you know what I mean? That’s kind of the way it’s always been. And when Sheridan is off school, she gets out of her routine, you know she’s bored, she doesn’t know what to do with herself, so having something this year to say, right, you have got something to do and it’s like every week, do you know what I mean, it was great.”

“The amount of the photographs and the story that I have written, we managed to do loads with it, so yes we are definitely going down the self directed support route, that’s right for our family. I don’t know if it will be right for all families, I think a lot of families need a lot of support to have the confidence to go down that route, but if the support is out there, then yes I would definitely say that it’s the way forward. And it takes the pressure off social services as well which is always a good thing because I think they often get criticised and told off for not doing their job properly, but their workload is horrendous, so that’s got to be a good thing as well.”

“It can make a big difference, not only to the child but to the family and to the parents, like other parents that have maybe got the child, someone else to take their child out for the day to give them a break and just to have that one break and not having the pressure of like changing your child and looking after them and then if they get frustrated you get agitated as well, so that all kind of affects you to have that … if it’s just one day of someone else doing that with your child, that … it’s a really good positive and it can make a big affect on your life”

It’s true that not all families will feel that they want to get actively involved in directing the support for their son or daughter, they might feel it’s too much work or too difficult, or not what they want to take on with all the other things happening in their life at any one time. But it’s also clear that families who tried Taking The First Steps over the summer, gained confidence through the support they received, both from their workers and from their peers. We have heard many examples of new found freedom, independence and growing confidence which wouldn’t have been the case had it not been for the £200 in the 6 weeks of the summer holidays.

But this is only the beginning, after Taking The First Steps, come taking the next steps, and working out how families can take control and direct all the resources that are at their disposal, including the funding available from their local authorities, this includes developing resource allocation systems that work for children, family and young people, but that’s another story.

But for now, let’s hear finally from Bill Alexander, Director of Health and Social Care and Highland Council, as it’s not just the families that recognise the difference that this approach makes. Like some of the families, Bill was initially cautious and ambiguous about the potential benefits of this approach, but he has also changed his mind over the summer.

BA The families who have had access to funding that can they control and they can use to meet their outcomes do find that it is transformational, that they get something out of it, they get something out of having the control, having the responsibility. People talk about freedom of choice, people talk about wanting to manage the resource themselves and the incredible thing about this project is, with a fairly small fund, what people have achieved from it, and when we do have to be mindful of how we use the resource and get that resource to the most people and when you see the impact that it has on people, that has to be very compelling.

Thanks to everyone who got involved in the Taking The First Steps process, particularly to the children, families and young people, staff and ocial workers and local authorities and all the other people who were involved in making Taking The First Steps work well. It worked so well in fact that we are going to do it again next summer.

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