Podcast Episode 75 If not now when? Planning for the future can be scary for anyone but it’s especially hard when that planning is for a young person who we know will face any number of challenges as they navigate towards their ideal life.
In this episode Carol Wakeford from Heartventure shares her story about how she and husband have planned and then worked towards providing an independent future for their son. Carol talks about the original idea she had of starting a dating agency and why that original model didn’t work and how it has now transformed into a different model which provides not only a social life for her son and his friends but also helps to break down barriers and build wider understanding in the local community.
Carol also talks about independent living in terms of how to create a supported living house for young people. She discusses the practical challenges of making it work and how to find the right people to work with.
Planning for a future, we won’t always be a part of, isn’t ever going to be easy. Planning though can not only provide our young people with the security of realistic options it can provide us with peace of mind and help us stop asking what happens when I’m no longer around.Show Full Transcript
DEBRA: Welcome to Episode 75 of the Journey Skills podcast. This episode is all about planning for the future, it’s also about thinking about the future where you won’t always be around to help with that planning. I spent quite a lot of time thinking about the messages in this episode and honestly keep coming back to something that I think most parents of a young person who has additional needs think about quite a lot. It’s a really important question. It’s very, very, very scary and it needs to be dealt with sooner rather later, and that’s the question of what happens when I’m not around. And like many families, we have an extended family, my daughter has a sibling, and I know that they would always be there to make sure she was okay but should I have to do this? And more importantly, would she want them to do it?
And I think the answer is no. She wants her independence. So I see my job, in part, is to help her build the life that she wants. And of course, it’s partly selfish because once the question of what happens when I’m not around is answered, and I can enjoy some time watching her live the life that she deserves.
So I’m talking to Carol Wakeford about how she and her husband have gotten their son, Daniel to living a much more independent life and one that he can sustain when they’re not around. We talk about relationships and we also talk about housing. Relationships because you’ll hear Carol started a dating agency called HeartVenture and should explain why the original idea around the dating agency didn’t work and how it is moved into something different and something that works really, really well. And she also talks about supported housing and how Daniel now shares a house with friends, how that works, some of the challenges of getting it up and running. And I think she does a very good job of reminding us that so much is possible. But it isn’t easy but I think we’re all up for the challenge anyway.
So it’s all about future planning and helping our young people move away from us because like it or not, they need to. It’s the right thing for them and it’s the right thing for us. Scary? Absolutely! But the right thing to do.
DEBRA: Today I am talking to Carol Wakeford from HeartVenture. Welcome, Carol!
DEBRA: Can you tell me a little bit about yourself first of all and then all about Heart Venture?
CAROL: Yeah. Well, I’m Carol Wakeford as you say and I’m married to the wonderful Barry Wakeford and we have a wonderful son called Daniel Wakeford. And Daniel who’s been autistic all his life obviously. We realised at about the age of.. I think it was round about 18 months really and took a long, long time to get a diagnosis. Then he got the diagnosis and fought where we can go from here. We did all the school years and that’s really great because school there, they’re all in compensin, they take over social life for them. Everything works around school and then basically they leave school and everything comes to a bit hefty halt.
So, we kind of “Okay”, looked at each other and thought, “What can we do?” So, we tried a couple of places to Daniel, residential places because I firmly believe that all children should grow up and move on. They need their lives and we need our lives and we tried a couple of places; one was very good but only for a short term and then we tried a smaller supported house which we thought would be ideal but actually we soon realised it wasn’t. So, we got talking to people that we’d work with throughout the years and we all felt we could do a better job. So, we thought, “Okay, let’s do it!” So we put together our own supported living house 7 years ago for Daniel and we built it up now to.. there are 5 of them now living there and now Daniel and Lily will be getting married next year so there will be 6 of them. And we just built an extension on to accommodate that.
But it was whilst we were doing that, that we’re also talking to people and realised that there wasn’t enough around them being able to socialise and form relationships, help people to form relationships. So my friend and I got together and we’ve thought, “Wouldn’t it be good if we could do a dating agency originally with our idea, our plan for adults with learning disabilities. So we’ve set up HeartVenture but unfortunately, within I say a year to 18 months, we realised that it was not going to work because we had over a hundred male members on our books and only 3 females. So we tried everything; we went rounded presentations at various organisations but unfortunately, we just couldn’t get any more females to subscribe. So we had to end that side of our organisation and we realised that while this was going on, the events which we were only going to do every so often, were very, very popular. So we got them then organised to once a month minimum and actually through the events, we’ve had several couples pair up.
So, we just decided we’re wasting all our time and efforts and resources into something that’s not going to work. So let’s do something that does work and so that’s what we do now. We run HeartVenture. Every month, we do disco karaoke night at the local pub and that’s really come on. It kind of worked organically. In the first place, we had the events room for the disco and people will come along. We did that for about 6 months (I think we were with that) and then Wednesday, they had one night, a karaoke going on in the next bar. And one by one, our guys could this and they started gradually going into the next bar and joining in. And it was a fabulous night. And the landlord ran me a few days and said “All the locals can’t stop talking. They loved that night and could they bring some guys along to the next karaoke night which we did. And then, he got back to me and said, “Look, it’s such a success, what about if we do once a month on a Tuesday, we have the disco in the events room and they have the karaoke in the main bar and we open all the doors and everybody can just wander around freely.”
And it’s been a huge success. So we’re very proud because it isn’t just about a night for adults with learning disabilities, everyone comes along; the locals, everyone, and it’s just about breaking down those barriers. And the thing that brought it home to me was PJ that was doing the karaoke at the time said that when he was first asked to step in and do the karaoke because he was there the first night, and was asked to do it the second time, he was dreading it. He was trying to think of ways to back out and he did it and he said he had the best night in his life. Thought I was gonna come along, there were people rocking and screaming and really weird behaviour and he said, “They were the nicest people I’ve ever met.” And that is just is all, doesn’t it? And now, as I say, it’s a regular event. PJ’s there, most mums, and we all know each other and it’s the busiest any pub would be I think on a rainy January Tuesday night.
DEBRA: You think it’s as simple as that then? That sort of simple thing; just breaking down the barriers. Suddenly people change their perception.
CAROL: I think it is and I think you can organise it as much as you like but it doesn’t kind of work that way because then you only get the people participate that really understand that in the first place. It has to be gradually, gradually get those people in which is how do you do that? I don’t know how. I never plan that. It happens. We’re always thinking how can we do that again? I don’t know! I haven’t got the answer.
DEBRA: Yeah, it’s interesting what you said about the dating agency because as a parent of a young woman, I can understand why there are probably more guys but was that the reason? Was that because parents of girls feel that they’re a little bit less likely to say to the girl, “Go out and date”?
CAROL: Mothers and fathers of sons are pushing them and bringing them along and say, “Please, find my son a girlfriend.” The parents of the daughters, they just put barriers up and say, “Oh no, they wouldn’t like that”. And I said, “You ask them.” “Oh, no, no, I know they wouldn’t.” And you know, with the right support and the right help, we’re so lucky, with Lily, Daniel’s fiance because her parents are so like-minded. And they just wanted her to find someone that she could share her life with. And they have and they’re so happy. And we just want other people to say, “Why can’t that be our daughter?”
I understand it’s scary but in the first place, we’re offering chaperone dates so that they wouldn’t be alone. We were offering all kinds of advice such as don’t swap phone numbers. There was a lot of safety measures put in place but they just can’t get past the fact that their young person is vulnerable (which we agree), there’s just that big fear. So, they don’t let them do it.
DEBRA: Which then stops them becoming independent and in a long term impact on the parents because … one of their great fears, or at least mine is, is what happens when I’m not around.
CAROL: That is the one. And I haven’t had a lot of people and I’ve upset a lot of people, I know I have. We’re having lovely chats and then they said “We are keeping ourself at home. We couldn’t bear to let them go. You know, we love them so much”. And then I’d say, “That’s great! But what’s gonna happen when you die or you physically cannot involve them anymore?” And they just… they has to be something there, they want it. I say, “Sort it now while you can.” When we first started HeartVenture, we were interviewing members for the organisations which have gone to the database, there was a young lady come to us. She was adequacy young lady, she was about 52 at that time, but her parents died suddenly when she was 44, I think it was, and she was put in an old people’s home. She stayed there for about 4 years and basically now, you talk to her and it’s like talking to an old person because authorities did not have anywhere for her at the time and they just found that the only option they had and so that’s where she ended up.
So, sort it now, sort it out while they’re young. And yes, it might not work the first time that you try. We are the same we try two. We have to risk a little bit to voice with the other. None of us skip the first job we take. It is very unlikely to be the first job for the rest of our life but you have to be open to risks, you know. And if you’re there to support them, then you can help them through that but they won’t be if it’s done with emergency and you can’t look after them anymore.
DEBRA: Did you start with friends then getting this together when you were doing the karaoke? How did that work? The actual getting the social activity going, you said it was accidental that it all worked so well?
CAROL: A lot of it was though about achieving things so they would be different courses going on, different activities whether they could do sports. It was about achievement but there was nothing about just going out and having a good time, you know, letting your hair down and chilling like the rest of us do. We go down to the pub, we meet our friends, we have a drink. There was nothing about that. And the nearest it came to was a few things that we went to and they were always invariably like jungle and there will be a table set up in the corner, with a few cans of coke. These are adults! They want a beer! You know, they want to go in and we noticed that it reflected in a way they were, they weren’t overdressing up, they would just go along in what they’re wearing all day; jeans, t-shirts. Yeah, that’s fine, but that’s the attitude.
And then, we’ve decided why shouldn’t it ever be a glam? Why shouldn’t they do what you and I do? So we thought, why shouldn’t they have what we have? You know, go down to the local pub. Why can’t it be a mainstream venue? Our criteria, we don’t go anywhere unless it has a bar. If it hasn’t got a bar, we’re not there. And they don’t all drink. And so we opened up, we launched it all. We did a big gala night and we did James Bond themed ball. Everyone got into spirit and we had the best night ever.
We had our resident DJ who is autistic. We also got several bands together made up of all the various guys that we know that full bands and groups, done with some dance and singing and some mainstream. You know, other people that don’t have learning disabilities joined in as well, did some singing. And we had an amazing night. And then we went forward, and we spoke to various places that had events rooms attached to pubs or whatever. And said to them, talked them into, “Let’s have it for free” and that’s basically what we did!
It’s a win-win situation for everyone because on a Tuesday night as I say, it’s absolutely burst in at the scenes, whereas you go any other pub, you know. So you could talk to your local landlord and say, “Look we would be bringing all these people, they’re gonna be eating and drinking, give us the place free and you’d be surprised what they do.”
DEBRA: Can we talk a little bit about the shared housing then? You said that you got to a stage where you didn’t want your son to live at home with you. Obviously in a fortunate position that you could do that but how did you do it and what were some of the biggest challenges for you in getting that up and running? And what’s the challenges even today with the guys living together? And what kind of sport do they get? That sort of thing.
CAROL: So, basically we wanted them to live as independently as possible and we’re about supporting them to live their lives. We tried previous to doing this and there were so many loops and hurdles come up that we actually gave in. And then, over a period of time, I kept talking to people, different support, companies. We spoke to the local social services and bit by bit, we got more and more information together. And then, I spoke to support workers that had been working with Daniel over the years that we built up quite a good rapport with. And talking to them, and we said, “You know, if we could only do our own.” So we kind of said, “Look, if we put the house together, would you come in with us?”. And they said, “Absolutely!” We put the finance in and they gave us their knowledge and skills and we just worked together and it’s a case of work on a lot of reports with social services team. They made us go away and put loads of policies and procedures together. They give plenty of things as we spoke. But we did it! It took months but we did it.
And Barry and I went out and found a house. Mortgage ourselves up to the eyeballs did it on a buy-to-let mortgage. And we converted the house so that it was 5 bedrooms with 5 bathrooms. My thing is, they’re adults, they need their own bathrooms. So, that’s what we did! And we found the perfect house, it’s opposite a bus stop to get them into town in 20 minutes and that’s what we did! When we started off, we only had 3 tenants in the first place, Daniel being one and then his 2 friends and then we had another young man come along and then Daniel’s best friend came along, and now, Lily. But that’s it, now went full to fasten.
Brighton and Hove are so pleased of what we’ve done that they actually asked us if we would consider opening another house. And I said, “We’d love to but can they provide the house because we can’t afford anymore.” There lies the problem. But having said that we do know of people that have done this that haven’t got property and had privately rented and that’s been quite successful as well. So you don’t have to be in the position to be able to buy a house, you can go out and find a landlord that will be happy to do this. And if explained properly to landlords, if they’re looking for long-term tenants, it’s perfect!
DEBRA: What kind of support do you provide? You said it’s a supported house, what kind of support do they get?
CAROL: We have 6 people here now and we have 9 staff and so it’s 24 hrs a day support. There is always someone sleep-in, a member staff sleeps in but it’s a sleep-in staff. Our guys are quite able at night. So, we’re just here in the case of emergency or oversee prompting to take meds at night. We don’t do personal care but lots of prompting. It’s a bit like you do when your kids are going up. You know, “Have you got your phone on you? Is your phone charged? Have you got your wallet on you? Bus pass?” So which constantly— it’s a military position. Organisation. Sometimes we have to… one member start to be out with someone and another member staff meets them with another person and they’re going from somewhere and that one goes back to meet someone else. We’re in contact the whole time with each other. All these, our service users have all the members and staff phone numbers. We support them with their cooking. We support them with their shopping. Every day to day thing really— clothes buying, toiletries, their room cleaned. If you just said to them “Go and clean your room”. He would be 2 minutes cleaning it and the rest of the time with his computer because he is easily distracted. And then there’s a good side where we go on holidays with them.
DEBRA: But assuming though that there’s a cost to all this. [Absolutely!] With Classly that would be a big challenge for anybody trying to do it.
CAROL: Well, you see you got to remember, I’ve always said to people, “Think 3 parts”. So there’s the rent (which gets paid by the local council, it’s housing benefit), then they have their benefits in their own right (their ASA, their PEPS). So that, they pay all their own household bills with that. So that’s another thing we support them with. We put all the bills together every month. We pay them and then we a portion as usual like the electric that’s just a straight for divide between 5,6 people, and food, they all said they’d like to do it that way. And then there will be some other things that we might get fair tickets. So that all get a portion to whoever has that extent.
So every month, they pay their share of the household bills. So that all comes out of their benefits and then you’ve got the support staff. We’re contracted to Brighton and Hove. We have divide contract with them. And we negotiate their support. So there’d be a set amount of hours plus we negotiate how many one-to-one individual do they need and the social services pay that. Parents don’t need to pay anything. These people, they are their adults in their own right. And because there’s 5 and there will be 6 soon, you know, they can afford to do it and they can afford to save and go on holiday.
DEBRA: Do you think that’s the right thing that people don’t see. I mean these are obviously only parts of UK but generally, do you think there’s a perception that it won’t be affordable because they need support, they won’t be able to afford it?
CAROL: Yes. Long issue can get that funding from the social services and they agree to funding to have max where you have to fight. That’s the biggest fight. Because the ASA and the PEPS, you have to go sometimes for medicals and whatever but normally, that’s not a problem, so they get that anyway whether they’re living here or living at home. That’s the big cracks, it’s getting the funding to support them within the house. And that’s where it always is a lot of negotiation has to go on the social services as to… they will assess them as to what they believe that they need support whilst you assess them to what the reality is. That is the tough bit to get. Sometimes, people are lucky. The social services accepts that they need help and sometimes they’re not . Social services obviously everywhere strapped for cash now. Funding’s been squizzed and squizzed and I don’t envy them because it must be a really hard task deciding who gets funding and who doesn’t. But obviously, all the time parents all say, “Oh okay, they can stay at home. That’s what’s gonna happen because it’s the cheapest option.” But you know, at the end of the day, sometimes, we have to say “I’m making my young one homeless”.
DEBRA: I mean, I don’t want to put words in your mouth but it seems to me what you’re really saying is that when it comes to something like socialising, when it comes to something like housing, sometimes as parents, we just need to do it.
CAROL: Yeah, no one else is gonna do it for you. That is it. And you have to do it. You’ve got to think of the greater good. And I can’t tell you the difference it makes. And other parents that I speak to, “Once they’re in a place and they’re happy, you see them having such a great social life.” I can tell the difference when we do HeartVenture between the ones that live at home with their parents and the ones that live in supported living residents. And I’m sorry if this upsets people but the ones live at home stay next to their parents and the ones like our guys are out there. They’re having a good time, they’re socialising, they’ve got all the skills. And that is the difference. There are some that live at home and they have been able to find the balance but I think it works more if they’re more independent. If they need someone to accompany them wherever they go, it can’t be sustainable forever at all. You haven’t got the energy yourself and they need to get out and socialise with people their own age.
DEBRA: Carol, thank you so much for your time.
CAROL: Thank you.
DEBRA: Key takeaway? Well to borrow it from popular saying If not now, when? Even small things matter. Putting in our young people’s minds that they’ll be moving out one day, it may not be soon but it will happen.
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