Rachel: Hi, my name's Rachel Harkin. I'm the head of Employment Advice Services at Independent Living Group, Trading and ILG Support. In the last podcast season, we were talking about some key issues that really affect individual employers. We had a focus on employment law and we also looked at some social welfare principles. This season, however, we're going about things slightly differently to bring you something of interest. I'm going to hand you over to David Ashley who is going to tell you more. David: Thanks, Rachel. I'm David Ashley from the Independent Living Group, self direct payments nerd. Also, really excited about season two of the podcast where we are going to be interviewing independent living group, community steering group members and individual employers, hearing from them all about their experiences, employing personal assistants. Thank you so much for joining us today, Agnes. Sunny Scotland, which is nice. SheÕs not saying [inaudible: 01:31] But yeah, thank you so much for joining us here in Hamilton. If I might get started then, can I ask what was your introduction to direct payments? And can you remember back to the first time you heard about it? Agnes: Yep, I do, actually. And what happened, my son was five when he first started having seizures and he was about seven before we really looked at him go into a special school and it was probably run about age of maybe ten or 11. We were looking at getting extra support and we had at that time we had a social worker and we had at that time an agency coming. They would do two evenings a week, they would come and take him swimming, take him out places [inaudible: 02:16] They let us down, really badly. HeÕs standing on the step, waiting to go swimming. Nobody turns up. It was a horrible time for him and it was difficult because I had two other kids as well at the same time. We had to then end up, well, one of us would have to take him swimming and other had to see with other two kids. We were just at a place where it wasnÕt working, it wasnÕt going to work with agencies. I did jokingly say to my career support worker, ÒI wished theyÕd give me the money and I could do a better job myself.Ó And it was honestly, tongue in cheek comment, given that if I had the money, I could do it myself. And he said to me, Òdo you can actually do that?Ó I thought, ÒNo, tell me more about it. I want to know. I want to find out because I would admit to being a bit of a control freak. I'd like to know what's happening. I don't have a lot of predictability in my life because we don't know when Gary's going to have a seizure. We don't know when plans are going to change. We're so used to and just responding to things that in the momentÓ. The more things we can be in control of, the more helpful that is for our situation. David: Absolutely. When was that? What year would that have been, roughly? Agnes: That would have been maybe 2003. David: Right, ok. Agnes: It was a long time ago and we looked into that. The kidÕs support worker I had at the time through the Lanarkshire Centre. He also encouraged me to find out more about caring opportunities and different things as well. Then I got my first job with the North Lanarkshire Carers Together as an Information Link Worker. I was then in that job, what I was doing was meeting other parents and shared experiences with them because I never do anything when I started. David: Your background wasn't in this world at all? Agnes: It wasn't this world, no. I have an HNC in Electronics. David: Oh, wow, ok. Agnes: Yeah, if your VHS video breaks down, I could probably fix that for you. David: Excellent a dying market, I imagine, but still a specialist there, aren't there? Yeah. Excellent. From asking your social worker then, what was the process, how did you end up presumably getting a direct payment for Gary? How long did that take? And do you remember, was it difficult? Agnes: From what I remember, it was quite quick at the time. David: Right. Agnes: And it was done in hours. It was the equivalency model then, it was done in hours. We actually found his first support plan the other day when I was having a bit of a clear out. David: Right. Agnes: His first support plan back in 2004 was for 8 hours a week at £8.20. David: Wow. Agnes: Back in 2004. David: When you say equivalence model, was this is what you were getting from traditional servicesÉ Agnes: Mhmm. David: You can have that as a direct payment, this is the rate? Agnes: Yep, there was an £8.20 rate at the time and I believe I think when they first started they might only been on £7 something. WasnÕt even £7.25 or £7.50. The hourly rate I think it was. David: I think the national minimum wage was introduced in Ô96 or Ô97 around that time isn't it? Rachel: Yeah. David: Late nineties Tony Blair's government. It was very low wasn't it? Compared to now obviously it's all relative. Relatively quickly then, you've got a direct payment, GaryÕs less disappointed he's not going to find himself sitting, waiting on the stairs for swimming lessons. Did you have to recruit PAs then? Did you call them PAs back then? Agnes: Yes. Well, what I did, actually probably wasn't right. But at the time, the person who was working with them through the agency, he didn't like the way the agency was run anyway. I took him on as a personal assistant because he already knew him and he was reliable. That was his first personal assistant. The other person that I took on was a student social worker who was actually working in a residential unit at the time. But I didn't go through a recruitment process for her. What I did was it was actually one of my work colleagues. It was a friend of a friend sort of thing. She was looking for a couple of hours to get through college and do her social work degree, and that was perfect for her having 4 hours a week and sheÕs still a [inaudible: 05:58] I donÕt employ her anymore. SheÕs still a very good friend. David: Oh, really? And she still knows Gary? Aw, that's fantastic. Agnes: She would still come. Give him Christmas, birthday presents, that sort of thing and still really, really good with him. David: Wow. You've got two PAs, what about support? Was there any support available at the time for you that would be recognised as you've opted for direct payments, speak to these people, was that even? Agnes: I actually had another mum. The carer support worker I mentioned, he put me in touch with another mum who was using direct payments. She then linked me to Glasgow Centre for Inclusive Living for payroll and IÕve used their payroll since. That was just the support I had got, she was just start telling me Òthis is what you need to doÓ and the support I got early days from Glasgow Centre for Inclusive Living with the payroll. We had to actually book, which we donÕt do now. We would of got a book of things. David: Right. Agnes: And it would just talk you through a payroll pack if you like, just to see this is what you do and IÕve learnt as IÕve gone on really. It was very scary at the time because I remember thinking becoming an employer and I'm thinking now if I look back, I'm thinking, well, 8 hours a week wasn't an awful lot. If I went in buying a bigger package, I'd probably said no thank you. David: Right. Agnes: Look where we are now. It's developed and grown and unfortunately his condition has got worse. His package grew and also he lives in his own house. That was quite a challenge to increase the package and get that 24 hour support because he can't be left on his own. That was a challenge, but it was doable. Looking back, I couldn't have done that then. David: Right, you've grown from his package from 8 hours up to now full time support. How many PAs do you employ for Gary now? Agnes: What I have just now, is I have 7 PAs right now. Between 7 and 10 PAs at any given time. What I have done and what, this has been a godsend, as I've put in a team leader. I structure where I have a team leader who will manage the PAs with certain things, she might do the time sheets, she wonÕt do the payroll, I still do that. There's certain things that she'll do. I use a wee app called When I Work. I donÕt know if youÕve seen that? David: No I haven't. IÕll put a link [inaudible: 09:00] Agnes: ItÕs a scheduling app, it's When I Work. You pay for it, I mean obviously you do pay for it. ThereÕs some of it you get for free but depend on how many employees you have on it. So, there is an opportunity to, you can clock in and out and if they clock in and out at the end of the four week period, you can just run a payroll report and that will tell you how many hours they've actually done. I find that really, really helpful. David: And is that paid for from your direct payment or do you pay for that? Agnes: Yeah, I pay for that from well, actually its ILF that give me the money for that because it's an extra. They give me extra money for that. David: Right. There might be people listening when you say ILF, there will be people who know exactly what they're talking about and there'll be might be some that don't. And I think it's important for us to mention that's where we are, well we are in Scotland. Could you just say a little bit about the ILF and how that fits in? Is that okay? Agnes: Yep, yep. ILF stands for Independent Living Fund in Scotland. It was UK wide and it was probably round about when Gary who left college, he was about 18 at the time and that was when my social worker had encouraged us to apply for the ILF for him because you had to have so much money coming in from the direct payment or from the local authority if you qualify it, to get the money from the ILF. And that's where I think I would describe that as maybe seven years of plenty. The money it wasn't so difficult then to get the package in the money available because if you had a certain amount from the local authority, ILF, usually they would match fund that. I did have maybe about 35 hours and 40 hours with what I was sitting with and we worked out that throughout the week to suit ourselves. Sometimes we had double ups because he maybe wanted to go swimming or cycling or things like that, which we would have termed and, risk assessed that as being a double activity just for safety concerns. But there was other things we would have done and be quite happy to do. And then leaving college, he set up his own business. And that was another wee challenge and a nice thing for them to do. David: The ILF then, summarises, is the central government funding to really support independent living isn't it? To look at somebody whoÕs over a certain threshold and say, Òwe're going to match it and go for itÓ. It was such a wonderful thing and we don't have it in England anymore. And I know and devastating to a lot of people and the idea was that local authorities would and I remember the period I was working in local authorities at the time, and it was a really worrying time for people because there was this requirement to reassess people. Local authorities had the choice then to either carry on what the full budget would be. We know what happened and what people were concerned about. The situation in Scotland [inaudible: 11:52] Agnes: I think in Scotland they were quite adamant that they had to stay separate as a separate fund. The ILF Scotland and I believe in Northern Ireland is the same. David: Yep. Agnes: They kept the money themselves. They divide that out between the older people in Scotland. You're right and in England, I think that's what happened. We just get sucked into the budgets. David: Yeah. Yeah. Agnes: Which is a shame. Rachel: Take an incredible number of calls at that point. We had so many redundancies. People were saying, Òif I don't have the ILF, I can't continue to support at all.Ó PAÕs were being dismissed left, right and centre. David: Yeah, it's really sad. Agnes: It's so awful and people need that support. I mean, it was described to me a long time ago about your core funding, if you like, and your direct payment, be in your house and your ILF being your extension. You had to have your needs met with the local authority package but with the ILF commend was for the social support and the extra bit and was, outcomes that you would want to meet, that you couldnÕt have and you didn't have enough money for with the direct payment. David: Yeah, which makes a lot of sense. And actually we don't need to get too far. It's the whole idea of wellbeing principles which certainly we have better than the Care Acts and I'm pretty sure in the [inaudible: 13:03] it wouldn't be too dissimilar. Rachel: And is that how Gary managed to achieve setting up his business? You've given us a lovely story here. HeÕs set up GaryÕs Eggs? Agnes: Yeah. Rachel: It's lovely and his PA has supported him with his day to day activities, looking after the chickensÉ Agnes: We had a team of maybe five or six PAs at that point, and they were supporting him to college at the time. We were looking at that transition, leaving college and what was he going to do and he wanted to work, he wanted a job. We live on a farm and he wanted to work. He did want highland cows, which we said no to. Maybe thatÕs not ideal. One of my husband's friends had some chickens he was offloading, so we had to start with 15 chickens and we just put them in the garden shed and he quite took to this. He wanted to feed them. Some people wanted to maybe buy his eggs and that's where we started with that. But what we did with that was he met the criteria for the Prince's Scottish Youth Business Trust, which is the PSYBT. He was disadvantaged getting into work and also he was in that age group. It was a bit like being on Dragon's Den actually because we had to do a presentation and we had to do, what's your business about? And then they would decide you met in front of this panel and they would decide whether youÕd get the money or not. It was really good. I remember the way we finished up the presentation was about your eggs being double yolk and he did get the funding for that. Rachel: Oh, thatÕs so lovely. Agnes: We had a few hundred pounds of that and that gave us enough money to buy more coops and more chickens. It was more or less about, we run it a bit like a social enterprise because we never made any money out of it, any money that he made he wanted to buy more chickens. That business just grew and grew over the years and his support workers, they enjoyed it and they quite, well most of them enjoyed it. I think the ones that didn't enjoy it, left. But that was difficult because, when we were putting out recruitments, well, you have to have a love for animals and you want toÉ Rachel: Of course. Agnes: There was a wee bit extra in the job description that we said you have to enjoy doing that, which most of them they did and they enjoyed that and they got a lot of that themselves. At the height of the business, he had about 300 hens. David: Wow. Agnes: We were selling about 7 to 800 eggs every week. We would do through community groups. We had our honesty box that we had at the door, which he built himself at his woodwork class. [inaudible: 15:49] honesty box. People would just come take the eggs and, leave the money. And it was really, really good. Just because I think the local authority weren't very happy with that as well, that he was using it in a different way. He was using some of the promotional videos to promote self-directed support because it was just the different thing. David: Wow, and thatÕs not continuing GaryÕs Eggs? Agnes: No, well unfortunately that's just another victim of COVID really. I think we were going to remember things pre-COVID and post-COVID now, arenÕt we? This generation. David: The whole idea of donation boxes and picking up the eggs. That became untenable did it for a while? Agnes: He had a wee delivery run. He used to go round and deliver eggs to people and that was good because it met outcomes for his social side of things because we did have a couple he would meet and he would take them eggs and he would get a cup of tea and he would get a chat, so it was meeting those social outcomes as well. Cost me money because I had to pay the mileage to take them round and deliver the eggs but at the same time it was worth it because he enjoyed going to visit. He would go see the first PA I was talking about, he would deliver the eggs to her house, and she would take him in for a coffee, so there was loads of things like that. It was meeting outcomes and socialising. So that came to an end when lockdown started, you had to stop doing the deliveries. People stopped traveling and they wouldn't come and pick up the eggs anymore. We had those things as well about people leaving money or whatever. There was a whole load of things and we just decided do you know what, enough's enough. It was getting a bit fed up and we thought, we've done that for nine years at this point. And we thought, this has just come to a natural ends and I think we just have to wind that up. David: And how does Gary spend his time now? HowÕs that postcode as we're coming out of it then, is there a big void to fill? Agnes: It was difficult because what we did after we had wound up the business, it was just after Covid, but my younger son had moved out the house and Gary was starting to ask, why can't I have my house? Why canÕt I have my own house? Why can't I do the same things that his younger brother was doing? Why not? He has needs, feelings, the same. He wants to move out. That's fine. It broke my heart, I couldnÕt think it, because I thought there's no way he could do any of these things. And I thought, I'm probably disabling him by doing too much for him and I thought maybe that's the best and the kindest thing to do is to let them go. Fly the nest. David: Oh, wow. That was the challenge then. Agnes: Certainly was and I think the work I'm involved in as well, I speak to a lot of people and they have children and they think Ôwhat's going to happen when they're not there?Õ ItÕs a big thing that's always in the back of my mind as a mother. What was going to happen when I'm not there to manage his package, to look after all his health needs, to do all the different things, that is a huge worry. Then I was starting to think about how do I plan and prepare him for the future to see that he would then be settled in his own home, with support around him. Actually, if something happened to me, his life would be settled and I don't think you would miss me actually, I did ask him one time and I was annoyed. I said, what would you do if I died? And his answer, very blunt, was, I'd come your funeral. Yeah, heÕs very straight talking and the funny thing was, we didn't get an autism diagnosis till he was 23 and I think looking back, why did we not know that? When he used to write on his chairs that we had, the kids would all argue and I don't know if you say, well, it's not your chair. Your name's not on it. And he went and got a pen. He wrote his name in the back of the chair. I'm thinking, why do you not know that? David: So you've got the house now and how far away is Gary's house from you then? Is he local? Agnes: Probably about two miles away from us. The lockdown 2020 was a very, very busy year for us. What I will remember 2020 for is the year that we all moved house. David: Right. Okay. Agnes: So what we did was, my daughter was looking for a bigger house because she had three children. They were all there on the spectrum as well, but they were looking for a bigger house and we were looking for somewhere for Gary. What we decided and was to give my daughter our house, a bigger house, the kids would all have a bedroom each and Gary would go and live in her house. And at that point we didn't actually decide what we were going to do yet. We were just, okay, you can do that. We had decided to downsize, but then that's another story. David: The council, did they support you? Presumably as part of this process, if you've got the practical plan of where people are going to live, Gary in his sisterÕs old house. He's going to need more PAÕs and you mentioned that you got that. I imagine there was lots of conversations going on around... Agnes: It was very difficult because it took about three months of negotiations, of looking at his support needs and the whole reason that he wanted to move out was because he's hitting 30 and who wants to live with a mum when they're that age. He had made it very clear that...I donÕt think it was that he didn't want me, but that he just wanted his independence and he wanted to be himself. He didn't want to it be, ÒPick up your socks or do this...Ó because it was different. When we lived in the house we lived in and we had actually separated anyway and that was my daughter's idea years ago, that we gave him the run of the upstairs, so we used to call that Gary's flat. He had the run of the upstairs of the place. Because that's one thing I always think when you have a package it isnÕt your own, you've got personal assistants come in, you cannot have a jammy day, you just don't have that. Whereas now that's actually great because I feel as if I've got my life back now that he has his own house and heÕs settled. That's an amazing feeling and I don't think I realise how much it impacted on me and how much I probably did for him, whereas now he's on his own, he has to do these things himself. He gets support from his PAÕs but, and this is going to sound silly, but he'll do his washing and he'll peg it out and that sounds like a tiny wee outcome for someone. You're like, how can you be pleased about him doing his washing? David: I think you can. Agnes: But I think it's wonderful because actually, in reality, my other son doesn't. Rachel: No, that's fairly normal. I'd be really pleased if my son did his own washing. And he doesn't have support needs. David: I'm still praising myself when I do it like it's a big achievement in my mind. I don't tell my wife that, but I do always feel, quite. Rachel: I totally understand that, I think all parents can relate to that. Agnes: HeÕs very particular, he likes things in a place and he's very particular and when he moved in he chose his colour schemes, looking back we say itÕs just very Gary, isnÕt it? Yes it is. David: That's brilliant and he's, I presume, happier. And you found a new relationship between the two of you. I imagine it's changed and mutated as a result in a positive way. Agnes: Totally changed the relationship because I think now heÕd be quite happy to invite us up for dinner. So we can go for dinner, once we've had a dinner we have to leave because you've had your dinner, so go away now. But it's quite nice because he then has his own space to do what he wants to do. He'll fairly say itÕs quite good now because we're coming out the other end of things and he'll keep hiself busy because he goes to drama. He's really interested. He loves playing chess. We've managed to sort a chess club, so he goes to a chess club on a Monday night and goes to horse riding. HeÕs got quite a good activity during the week and the PAÕs all support him to do that and they enjoy working with him, playing PlayStation, doing different things. And I've had one of the PAÕs who was a student social worker, and he said to me, can you believe I'm getting paid to play the PlayStation? David: ThereÕs a few things you mentioned about the PA role and this is something that came up in some of the other conversations we've had that for me I think government, anybody who wants to support and promote the PA role are missing a trick because there's so many wonderful, amazing things you can do as a PA that I don't think anybody outside of social care, they don't see it, they donÕt recognise it as a role to aspire to and how fascinating that you can do all these different things so personalised to different people. Rachel: How did you find the adjustment from managing PAÕs in your own home to now being two miles away in a property that's not yours, it's not under your control the same. Did you find that quite an adjustment to make? Agnes: It was quite an adjustment, but at the same time it was about me letting go as well. While they were in my house and I was quite happy, when they were coming and what they were doing and it suited my life as well because they would have started to let me get to work and we would have covered the evenings, weekends, because it's nice to have that time to yourself. Whereas when he was in his own house, that was when I then introduced the team leader role to say that person would then be responsible for getting the shopping in, doing his medication because I didn't up to that point even have a blister pack in medication. I would just collect them every four weeks, I would do them all myself and I think I should have done that years ago, because I think there's so many things that are just wee things that make such a big difference and that was one of them, was just getting the medication and a blister pack. David: And the funding allowed for you to pay that team leader? Agnes: Well, that's where the beauty of the ILF comes in because the ILF has allowed for that funding to so many hours. It was 10 hours more, I was getting at a higher rate and then the other I was with was just at the personal assistant rate. The person who was a team leader also falls and shifts and those other things as well. But 10 hours there would be team leader rate, the other hours would be PA. David: And can I ask, how is the ILF monitored, is it different or is it monitored together? Because I know that used to be quite an interesting difference. Agnes: It can be and that's another difference we have a north and south as well. ILF would generally do that reviews every two years and they would always do that in conjunction with their social work. WeÕre actually undergoing that just now, I'm doing a bit of a review just now, because that's over two years come July since he moved into his house which I cannot believe, itÕs absolutely flown. So that will be reviewed again just to see and and I think in light of, last year this time the early rate was £9.50. We are now a year down the line. It's £10.50 so that package has to increase to reflect that and the local authority has, come Christmas when it went up to the £10.02, it did give us an uplift. I think it was 4.7%. We were given an uplift at Christmas and they have given us another uplift just that the first day April there and that's why, it's quite good to have the review at this point in time because then I can look at that to say the wages all need to be uplifted and just review the package in that way. David: Any employment headaches you might have had over the years, there's been quite a lot going on. Is there any one or two instances? Have there been any issues with PAÕs that if you think about it, you think, oh, that situation was the one that would put you off. Agnes: IÕve had probably 3 PAÕs over the years. Over the 18 years I reckon IÕve had about 40 PAÕs. And I also reckon that there might have been about...a lot of that was during lockdown because there was a lot of change and that has been really unsettling for everybody and also, I believe over the last two years, it was more of a turnover, maybe because it was a 24/7 package as well, and they needed more PAÕs. So up to the first time, I've probably sacked about three PAÕs. Some of them I just knew the relationship wasn't right to start with, some of them, you just get a feeling and it's like a relationship. It's like meeting a boyfriend or girlfriend for the first time. And if they're doing things that's going to annoy me then I ain't going to spend the rest of my life with them. It's quite nice to think that and I knew I would watch and that's were the other PAÕs come in as well, because I would always allow them to be involved. I would do an initial interview. David: Without Gary? Agnes: Without Gary. Yeah, I would always do the national interview without him because I knew the kind of person would suit and also he can be quite take over and so you wouldn't get to know the questions and things you wanted to do. I'd do an initial interview, narrow it down and then say, well, look, I think there's this person who you might like, but you need to meet them and you need to see whether do you like them. And he would do a thumbs up or thumbs down or he would give me a wee nod and I knew whether they were going to get on, we had a wee code of some sort to say or even the non-verbal language. I would try and pick up on his non-verbal language. But at that point, I would usually ask one of his other PAÕs to sit in on that as well and they would also be then seeing how they interacted with him and that's what I would be watching for. I wouldn't say an awful lot at that second interview. I would be watching how they interact, are they talking to him, are they asking him questions, or are they coming in and saying, well this is me and, because when you have somebody with autism it cannot be all about you, it needs to be all about them. That's the way I think it works with a lot of the PAÕs I have just now because they do have a genuine interest in him as a person. And that makes such a difference. David: And a difference to Gary, presumably, that once they're established, they stick around and he builds relationships. Agnes: We've said to him, he can choose who he wants in his house. At the end of the day itÕs his house, so he can choose who he wants to be there. And if there's anybody that he doesn't want, I always ask him if theyÕve done a couple of shifts, I would sit down and say, look, Gary, do you like this person? Are you alright with that? And every now and again I would keep saying to him are you okay with so or is thereÕs anything thatÕs upsetting and I would make a point of asking him on a regular basis if there is anything so that if there's a problem you can address it quite quickly. I've always found over the years, I think the longer you leave it the worse it gets. David: That sounds like the mantra, doesnÕt it? Agnes: Yeah, I've certainly found that over the years and then I think you just get fed up. If people get fed up and they don't want to be there, theyÕre as well moving on. And it's difficult because I've had loads of people who have been really, really good. I've had one PA who I've took back on again. IÕve had him and heÕs left. This is the third time IÕve took him back on again and that wasn't always an easy relationship either. And he knew when it was wasnÕt working and he to say, look, that's fine. And now heÕs came back now Gary's in his own home, heÕs supporting him really well and I think it just needs to be in Gary's terms. And that's the difference. That's the difficult thing about me as the employer is I don't have to work with them and that that's the difficult bit. He recently had a diagnosis of PDA. I donÕt know if you've heard about PDA. PDA is called pathological demand avoidance. It's actually profiling autism, but he needs to be in charge. He needs to have those, even if it's just a sense of control. But how do you do that with someone who doesn't have capacity? I have guardianship for him and he canÕt make decisions. That's part of his other problems as well. But he needs to be in control of that because it's his life and he needs to decide what he wants to do, where he wants to go, who he wants to hang about with and although I have his guardianship at the end of the day I still give them those decisions. David: You mentioned that you dismiss 3 PAÕs. Could you tell us about one of those incidents? I'm just wondering for other people listening, you mentioned dealing with things promptly and I assume one of the top tips I often talk about and we talk about is keeping notes, keeping written records and trying to deal with things promptly and, informal is best for building good relationships, which it sounds like you're doing all that stuff that you probably have records, you're keeping the notes so that you know if things progress or go in another direction. Agnes: I would always keep a wee diary of things and that's actually the beauty of when I work as well and actually chat as well so you can set up chat reach for the PAÕs and if there's any issues of things you can address that or it's just a wee chat I mean like yesterday she's cutting her shift short to take her son to school for his wee induction for school, so IÕve put a wee chat on there that says I hope your son gets on alright at school today, but it's just about building those relationships and I think if you then make that about them that you care about them as well, you get that back tenfold. I would do absolutely. Yeah. And I think the managing staffs hard but then I think because of my manager and my work life as well, it's a bit easier. I don't think IÕd be in that in that role if I wasn't doing the direct payments, I think the transferable skills, because at that point I had ten staff and then progressed with my career as well. I was managing staff with direct payments and I think that's what people forget about, all the transferable skills that you have as a personal employer can then translate into your work life to move on and do other things. And I think that's been really wonderful here because I was a stay at home mum. I brought up my kids and I was there for them all the time. I had to be because Gary's condition was so sporadic that we didn't have that I could go get a job. I worked at a library for a wee bit but it was just a Saturday morning and I didn't ever do anything much. I wasn't a working mum. It was really only after I had my direct payment and started to manage staff, looking into all the different things that I started and was interested in then had got the wee job 12 hours a week at the Carers Centre, just to help other people through the same situation. David: And how many people do you line manage professionally now then, do you have people you manage now? Agnes: Four. David: Four, okay. And you think the confidence from doing it from direct payments is... Agnes: Yeah. David: ThatÕs brilliant isn't it. Agnes: Yeah, absolutely. And I think working out the compatibility with people as well and that's the big thing about it, where people's personalities and that's how I always do that first interview without Gary because I know whether that relationship would work or not. David: Do you contact ILG, I mean you sounds like you're fairly competent in anything specifically. You would reach out and say, I just want to double check. Agnes: I would want to, because I think if we had done that when we started with the house move and he got his own house, we had a few people who we took on. And I knew quite early on it wasn't going to work. And I would always just say, look, this isn't going to work and maybe give it two, three weeks a month at the most, to say I know this isn't going to work or it is going to work. And sometimes if I have that even coming up to that ten, 12 weeks, I would sit them down have a conversation with somebody, say, look, are you happy with the role? Is it what you thought it was going to be? All that kind of thing. And then if I know you would have have that patter, I would always do a six month probationary period because I think three months is not long enough because you've always got that honeymoon period. The first three months is fine. People can be alright and then it's just after that there may be wee bits about them coming in late or something going on. Now I don't need to deal with any of that because see if your shift starts at 10:00 and you're not there at 10:00, Gary will tell you, you're late. Excuse me. I didn't have to deal with any that, he would have done that. David: Does he let you know? Agnes: And he would also say if he knew you weren't going to work till 5:00. He wouldnÕt wait. He would make you wait until the clock went round to 5. Timekeeping was never a problem. He dealt with all that himself. David: And does he let you know that? Agnes: Well, now I know on the app because they clock in. So if they clock in late for their shift I get a notification. David: Got you. Yeah of course. Agnes: And we also had a Ring doorbell as well. The Ring doorbell is handy. David: Right, yeah. So you can see. Agnes: We knew he was coming and going and that's been a bit of a safety aspect as well for him just because we had a lot of issues over lockeddown health wise. We've had quite a difficult time the last two years. However, having said that, PAÕs have got us through that. David: Right. So the difficulties? Agnes: The difficult time we've been through, the PAÕs not only been there for him, but there for me. We had different occasions where I was able to phone one of the other PAÕs said, look, I need a hand. He's not going to engage with me. He doesn't want to talk to me. But I know you have got those skills to deal with this. Could you come and help me, please? And she did. An agency wouldnÕt have done that. David: I mean, that's fascinating, isn't it? We talk so much about the pyro role, how amazing it is and one example there you've given, we talk about continuity being important, building relationships. It's more than just, what we say, isn't it? You've given us a real example there of what a huge difference that's made to Gary's life and to you. The ILG community then, steering group, that's how we got to know each other. What are your thoughts on the support available for other people? I know where you're based, you're involved in the support, of course. Take control, but we know it's...I hate the phrase postcard lottery, but it is a bit of a lottery, isn't it? Across the UK, the support people have. Agnes: Even just in this local authority, even just North and South Lanarkshire. I live in one and work in the other and the difference is quite astounding. But I think the beauty of having the group and working with the different areas is finding out things that work well and I think there's a lot of things that work really well in Scotland. We have an overarching organisation called SCS Scotland and if you didn't like where you are in Scotland, you could phone them up and say, look, I live in the island, what is there to support me or where they are and they would link you in with a separate support service in that area or centre for inclusive living. The main ones in the central belt would be Lowry Centre for Inclusive Living and then Glasgow Centre for Inclusive Living. David: Right. And the community as you say particularly via the Facebook group, you get to see, you're able to explain that to other people who might not see that's happening. People in England and Wales can see what's happening. Have you picked anything up from England or Wales over the last year in the group? Is there bits and pieces you see, the posts that people put on that have stuck out for you, anything that's... Agnes: Yeah, I think a lot of the posts are really good and I think having that wee safe space for people to see, they can ask a question and they can find out what it is that theyÕre looking for. Was it payroll issues or different things because people don't...I didnÕt know where to look. Where do you go for something that you don't even know what you're looking for? Where do you start? That's where then I think people donÕt even know. Say if you can say what you do for a job, how do you explain that? It must be the same for yourself, itÕs so difficult. If you're a lorry driver, people know you drive lorries. If you work and self export what or self without the support, they don't know what it is. It's so hard to explain to people and sometimes it's just even meeting people. I mentioned a couple of times about Gary being at the swimming. We started swimming, watching the kids in the pool and one of their mums next to me had said, Oh, I've got a budget now and different things and I don't know what to do and I said this is your lucky day, and we've since struck up quite a friendship now, but where do you go if people donÕt know? David: So she's almost like you 20 years ago. Agnes: She was like me 20 years ago and sheÕs like, I don't know what to do. I thought, well, you've got to think about recruitment. You've got to think about job descriptions, you've got to think about, let's get an advert drawn up for you. Let's get different wee things and I helped develop a load of things which the previous mum I met right at the very beginning helped me with thinking about, so we've gone full circle really. David: But peer support is such a big part of the equation isn't it. The support from peers and listening to you is inspirational and I hope there's other people that might pick this up and listen to it and they might hear what you're saying and actually will really, truly resonate. What would be the biggest thing, do you think that you would if you could go back 20 years and tell yourself, how would that conversation look to think now and everything you've said and the journey yourself and Gary have had? Agnes: I wish I knew then what I know now. David: Is there anything specific if you have 5 minutes? Agnes: I think when I was younger, I would have taken, I was brought up, you respect your elders and I'm not saying you shouldn't respect people, but see, when you have a child with disability, you know them better than anybody else and what I would say is don't always listen to the professionals because they don't always know what's best and even the most recent experience I've had there maybe a misdiagnosis or different things going on. I think just stick to your guns. And if you've got that gut feeling with health professionals or anybody else, you know what your child needs. I do come across some parents who then maybe go to that stage to see where they might be and what I would describe it as a bit of a marker and say, poor me and what I've done. I would actually say the experience I've had in life has been mostly positive. I'm not saying I've been dealt a good hand. However, it's that wee saying about, if life gives you lemons, make lemonade. And I think that's where we've went to be. We've had a difficult situation and I've said my background was I used to work for Mitsubishi. My career choice and my life has went a total different direction because I'm an unpaid carer, I came through those experiences, but that has then led me to be the and the professional industry now as well. It's been quite a journey, but to me I'm quite thankful for those experiences I've had because I think if I didn't have those experiences, I wouldn't be doing what I'm doing now and I wouldn't be helping other people to do the same and I think that support makes a difference and certainly that's what gives me the satisfaction in life, is that if I'm helping other people to achieve similar or they know I've gone through a similar situation, they know what itÕs like. You spoke about having to fire people, I've had those sleepless nights. I've had those nights where, I did have a young gentleman and it was he lost his girlfriend, lost his kids, and he was losing his job. And I thought, I can't do this to him. And it was so difficult. And I had the sleepless nights and it was so hard and I thought I'd never get away from remembering, I've always had to bring myself back to that, to think I know what that feels like and I think that's where it's really important that you've got that empathy that comes through for people because you then understand if people know what you're talking about. You've been there, done that, wore the t-shirt. It does go a long way. David: Yeah, absolutely. Wow. Powerful stuff to the steering group. Maybe we can do a little bit of that with ILG as well. I know you do it professionally in terms of supporting others and I agree so much that you can pass on the learning and that's part of it, isn't it. It's not letting it just dissipate and disappear and be lost. And I hope you're able to stay involved in the steering group, as long as possible. I really do. Thank you so much for talking today, Agnes, it's been a real pleasure. Agnes: It's been really nice to meet you in person. David: Yeah, really good. Agnes: IÕve only saw you in 2D! David: I know. And I want to ask you about tracking on video players now, but I'm not going to. Agnes: My grandson is like ÒWhatÕs a video, Gran?Ó Yeah, we used to make videos and in those days you starred in them and then we actually physically put them together.