Podcast Episode 23. Independence can be reached in many ways. Shared Lives in the UK offers one approach to help people with additional needs develop independence focused skills based on a holistic approach. This week we talk to Karen from Shared Lives who explains how this innovative program works
Shared Lives matches hosts with people requiring support to develop certain skills. It offers a more individualized and a supportive family and community focusing approach. There are a variety of ways to access the program, whether that be a full time placement within a family or day opportunities where hosts might teach specific skills such as baking.
Karen explains how Shared Lives works and the benefits of being in a home environment with 1:1 support which enables skills to be developed at the pace of the individual. Karen says one advantage of the Shared Lives approach is the ability to tailor to an individual needs and provide sustained support at the level they need for a timescale that suits them.
Karen also talks about the process of selecting people to be hosts and how it ensures the safety of the individuals being supported. The unique approach to matching hosts to individuals is also discussed and the way it enables individuals to have choice in how and who supports them to reach their goals.
The Shared Lives approach works because it focuses on the individual and is not time constrained when it comes to achieving goals. While it may not be the right approach for everyone there is no doubt it provides people with additional needs the chance to not only develop skills and relationships but also to become a valued part of their community.
[3.20] – Background on Karen and Shared Lives
[4.30] – The flexibility of the Shared Lives approach
[5.20] – A success story
[6.10] – The importance of community
[6.30] – Using Shared Lives as a stepping stone
[7.00] – Becoming a host
[9.00] – The skills that can be gained
[9.50] – Measuring progress
[10.30] – It’s the amount and quality of the time spent that leads to progress
[11.20] – Understanding the individuals triggers
[12.15] – The lack of awareness of the Shared Lives scheme
[13.00] – Matching people the right way
[14.30] – Choice and control
There are organisations out there offering solutions that might suit your young person
DEBRA: Welcome to this week’s episode of the Journey Skills podcast. If you were back with me on episode one, you might remember I talked to Hesther from the Ark Project so today I’m talking to Karen from Shared Lives. They’re actually the organization behind enterprises like the Ark Project or at least providing them with support. Shared Lives is a UK-based organization which provides opportunities for people with additional needs to learn new skills often doing this by living with families who provide support for them. They also offer day opportunities in the same vein helping develop skills. In the Ark Project’s case, it was baking and smallholding aka farming skills.
When we started Journey Skills in this podcast, our main motivation was figuring out what options were out there for our daughter when she finishes full-time education. So, over the last 20 episodes, not only have I learned heaps from other parents but I’ve also found a number of brilliant organizations doing what I’d hope; providing options for my daughter. Yes, Shared Lives are a UK-based organization which is great for me, but when I was recently in Australia, I talked to Mitch from RedInk and RedInk is an organization based in Lismore in New South Wales and they’re supporting people to live their lives they want. So, I know there are organizations out there doing things which will enable our children to live fulfilled lives with the right level of independence that suits them.
Karen starts off by explaining a bit about her role within Shared Lives which is essentially assessing hosts for suitability. She explains how Shared Lives works; offering a variety of options: long-term, short-term, respite and also day opportunities and supports people with a variety of additional needs. We talk about the benefits of being in a home environment, the one to one support which is different than say residential type of environment or even what Karen refers to as taking a care package where people would come to the home of the person needed of support and the time constraints for both of these are quite obvious and as she suggests can limit the opportunities for real sustained progress. That’s not to say and she also says this, that those aren’t suitable options for some people. It seems to me that these approaches of being promoted less and what comes across here is the idea of a holistic approach. Shared Lives can be used as stepping stone to a more independent life.
And I must admit after talking to Karen, I was thinking, my daughter doesn’t necessarily need another family, although she might say she liked that option they’ve got in placed but as with most young people, she’s more likely to listen to anyone but her parents, so it’s certainly could be useful for her to develop certain skills which allow and give her the independence that she wants. And I also like the idea that there’s a bit of match-making service when it comes to matching someone with a host. We also talk about becoming a host and the process behind that. And I did this in part because I hope to provide a little bit of publicity for Shared Lives. As Karen mentions, not enough people know about the program and also, it’s reassuring to know that the process to become a host is quite rigorous because that’s always the concern, at least for me, that whole idea of safety. Karen also shares some of the successes of Shared Lives so we can get a real feel for how Shared Lives works and how much of a difference it’s actually making to people’s lives.
DEBRA: This week, we’re talking to Karen who works for Shared Lives. Welcome, Karen.
DEBRA: Can you tell me a little bit about yourself and your role within the organization?
KAREN: I’ve been in the care sector for number of years now. I qualified as a social worker in 1993 and then worked to various roles with people with learning disability, physical disability, older people, hosted care, all sorts of variety of health and social issues. Two years ago, I changed role and became officer working for the Shared Lives scheme. Within this role, I go out to assess potential hosts which some people that will actually look after people in their own home. This can be either long-term where they can stay for a long period, or it may be short-term where they just go for a period of respite or they might just prefer do day school; people come to them to learn a variety of skills. We also have people that access the scheme. They can have a variety of disabilities, we now have people who have mental health problems, autism, learning disability, physical disability. Here it covers a wide scope.
DEBRA: What do you think the benefit is in getting people into that home environment?
KAREN: I think it’s nice to be able to have one to one care. It’s much more personalized, it’s not so time-restricted as well. Whereas someone has a care package, the care is restricted as to how much time they can spend with that person. They also got traveling time to go into that as well. So that can make it a lot less flexible but it also gives the host time to actually work with the individual and help them achieve their goals because sometimes people can take absolutely ages to achieve one small thing but that could be really important to them. It might just be able to go to shop and buy loaf bread. Well that could take three attempts. Whereas in other services, they might not have the time and might be harder to achieve.
Also, it gives them a much more holistic support package. A few people that have come into the scheme, they’ve never been on a holiday. Now they’ve gone off to New York, all sorts of different places. They’ve learned by going on holiday about different cultures and different things like that. Whereas before, they wouldn’t have that got if perhaps they’ve been in different environment.
They can also go and stay with other hosts as well. Some of the hosts, they need respite. The adult they’re looking after might go and stay in a different host so they can swap around and that’s quite nice. They all benefit from that as well. It’s the quality of care, really. I mean, we had one gentleman who has been living with his family for years. His mum supported him. Very supportive family. Mum died a number of years ago, and dad became poorly and he wasn’t able to support him at home because of some health reasons and so he ended up in residential care. Unfortunately, he wasn’t using that home. He didn’t really flourish, he became more demotivated, just wasn’t really happy at all. He’s already in his early 40s at this time.
He was referred to Shared Lives, a host was identified. This guy actually moved in with them and has flourished ever since and they have been able to help mobilize a lot more. He’s got more independent; he accessed a whole range of activities in the community which he finds really beneficial. He had work placements to support him as well. That really gives him a whole quality of life he didn’t have before and he’s able to verbalize.
DEBRA: It was more of that sense of being part of a family?
KAREN: A family environment and the community environment as well. He’s very much part of the community as well to make a big difference. Because you can become quite isolated sometimes if you’re in a residential care setting.
DEBRA: So, is that the overriding aim of Shared Lives then really is to move people out from a residential type of approach?
KAREN: For some people, it is the only option that does really suit them and there are minority to that but ideally it is a good move if we can do that but also our rather view is to try and move to make people as independent as possible so they may use Shared Lives as a stepping stone. They might be from residential then got into Shared Lives developed some skills like budgeting, survival, cookery, things like that.
One lad, he moved on from a Shared Lives’ host into her own flat. The Shared Lives’ host because this lady’s family still has contact. So, she still has a support network around her. She’s really good. Ideally, our aim is to make people as independent but we have to be careful that not everybody can really be independent and sometimes you just have to set a limit to that where it might be able to take little steps on certain things. It should be a big goal for them.
DEBRA: You talked about the families that take people in, so what’s the process for letting them?
KAREN: We do have marketing, we hold information. So, people that come and talk to other hosts and the service users and then if they decide to go ahead, they complete an application form. We also have to DBS check them, pre-assessment visit is carried out and to check the house is suitable and that the host fully understands what the scheme is about because sometimes there will be misconceptions. If everybody decides to go ahead, then an officer is allocated and we start the assessment process which can take a month or can take longer if needed. And we go out and experience that person’s gut. Sometimes, they may need to access voluntary work if they’ve never had any care experience at all.
We also have other hosts that gone do visits, so they give us a feedback assessment and they would take the person they support with them. Say, that person likes the house and the environment, they will feedback to us. Or if they find it’s not quite right, we feedback that to them as well. As an officer, I then complete very in-depth assessment which is background information, we look all their interests, things like that. And it’s really checking out that they can support someone in their own environment and that person is going to be safe, feel looked after.
Also, it could be a variety of people that apply and we’ve had a whole range of people; fast drivers to the other end of the scale where they are qualified professionals in the care sector.
DEBRA: What do you think motivates people to do it?
KAREN: They seem to want to give something back or somewhere in the history, there’s always been something where they were able to look out for someone else or they’ve had maybe a sibling with disability or something. But it’s quite humbling stories that we get and help people sometimes found themselves together and then want to become a host because it is an amazing job that they do. Some of the people are foster carers, they’ve people from the age of say, babies. And then we approve them with Shared Lives workers when that person becomes age 16+ so that they can continue to do that if the person wants to.
DEBRA: So, is it two parts then? Then there’s a part where you would stay with the family 24/7 and then the part where you go in for a day?
KAREN: Yes, that’s right. Some people might do short stays and day supports as well. There’s a whole mixture, really. Or it could be a long-term host, they might have someone else that comes in for the day because the person they look after might go out for day opportunities or they may be part of the day opportunities of the person they take part in. And they don’t actually have to be totally based of the person’s house. You use it as a base but you go out from that base to do different activities.
DEBRA: What kind of skills are people learning?
KAREN: There’s a whole range of things, could be budgeting like taking somebody shopping and if they’re aiming to get their own flat, to take them out and about in a community and get them to their shopping list first. That sort of things. And then to go around the supermarket and choose items. I mean, with somebody with autism that can be quite a major thing to do because usually they’re very sensory perceptive and supermarket can be a worst place because you’ve got bright lights, you’ve got the noise, it’s unpredictable. So, it can be about breaking it down into small steps. And that’s what’s nice about Shared Lives, they can do it slowly and take their time.
DEBRA: Is there time limits on how long people stay?
KAREN: There’s no really time limits as long as they have reviews with their case manager every year as well. So, with one guy for example, we decided he’d do scrapbook to show his progress instead and he’d love that. He’s now training to be a car mechanic and he accesses courses at college as well. And he’s started to come a lot more able-like to do shopping, that sort of thing. And he actually describes Shared Lives the other week as being entering the gates of heaven, where he was really listened to. Whereas when he accessed some services before, he has felt like he was not being listened to because of his learning disability, autism because sometimes we have a little bit more time with people than some of the other services. We can do that. That does help. Because I think with some people, if things are rushed, it doesn’t work with them. That’s what the host like, they can spend quality time with people.
DEBRA: So, do you think that’s the main benefit then, it’s the actual time?
KAREN: I think definitely.
DEBRA: I know from my experience, it’s repetition, isn’t it?
KAREN: Absolutely. Sometimes, they need a lot of repetition or finding other ways to do things, of finding ways to engage them. We have one lad who was completely obsessed with circles. So, the host did a lot of things around that. Or with travel training, it might be the host to look for suitable app to go on their phone so it will help them when they go on a bus, give them clues about what they need to do next. If things get a little bit passionate.
We’ve got some phenomenal hosts who’ve got some people who have very challenging behavior who were in a residential home need to have a team of workers to look after them but because the host knows him really well, they know what triggers are going to set him up but it’s also about teaching them how to survive in community as well which can be tricky.
We’ve got one lad, very challenging behavior who has set routine every day, wants to go to coaster, gone has his coffee on Tuesday but sometimes he might be sitting in his favorite seat in coaster so the host has to work around that and say, “You can’t always sit that seat. It’s not always your seat.” but because he knows him so well, he knows his triggers so he set him up for different things so he can avoid different things with him or work with him in different ways. And this particular part can make himself suffer and vulnerable. He thinks it’s okay to say anything to anybody and it’s about the host working with him and with his own family as well working with him, giving him back up. “You can’t do that because that person might come up and hit you if you say that to them. Even if you don’t mean to say it.”
DEBRA: What kind of training do you give the host?
KAREN: The same training they’ve had before, they all have to do and manage 3 courses. They’re going to do it straight and they have to care and understand us. It’s like workbook and different modules of training, have to access and produce evidence that they’ve understood. As I’ve said before, if they’ve not much experience, they might use some voluntary work. Some other hosts, if they’ve got good information, they might help another host. And also, about their house as well have to be carry out health and safety assessments as well. They have to have 5 plants in place.
DEBRA: How long Shared Lives been around?
KAREN: Over 25 years but a lot of people don’t know about them. One of our biggest challenges really is trying to make more people know about it. It’s a national scheme.
DEBRA: Why do you think there’s a lack of awareness then?
KAREN: I think in adult services, we have less of a budget to market service but obviously, because children’s needs are paramount.
DEBRA: What age do you start Shared Lives in?
KAREN: It’s now 16 but there’s no any gaps anymore. Whereas we used to stop at 18 for children services but sometimes there’d be a gap. And in case some people might fall through the net. So now we have team for 16-25 and 25 upwards. A much more continuity.
DEBRA: Do you have a whitelist?
KAREN: Constantly, we have a referral list. This is what’s good about the service which is different to some ongoing into residential care. They can have a number of visits with the hosts in a variety of settings if they want to because it’s good on both sides. It gives the hosts the chance to see if they can get on with that person or with the other members of the family and vice versa. So, if they want to go there for respite, for example, so they might just go for a cup of tea first and then perhaps go for lunch and feed you up to one night and carry on like that, which is quite nice. It just gives people a chance to get to know each other are not expected. Because sometimes people don’t show.
DEBRA: And what’s the longest that someone stay?
KAREN: We’ve had people that have gone in for foster care and then they might be in their 40’s now.
DEBRA: And they’re still with the same person?
KAREN: Still with the same person. The any problem we have is because obviously our hosts are humans and there’s health problems kick in and they might have to retire or there can be all sorts of issues or the person wants to have to dropout.
DEBRA: And I guess, when someone has been with someone for a long time, that can be quite traumatic.
KAREN: Yes, can be. That can be quite difficult finding another host that meets their needs. That can sometimes take quite a few visits to different people. I might try to think out of the box sometimes and I think it’s nice if people have more individualized plan as well while they’re in the Shared Lives placement. We have a website where it’s bit like a status and see website where we share the house and we share the hosts and their pets and everything because pets can be a big thing; some people hate pets, they might hate dogs, they might love them. You know, that can be a big match in proper.
DEBRA: And I guess as well the young people would feel like they’ve got they are the ones with the choice.
KAREN: Yes, that’s right. They feel like they’ve got more control and with the My Life Support Plan, it has different goals that can be like “What do I need help with? Is there a bit of help with money? Or is it help socially? Do I need help with my electronic stuff” because that’s a big thing with social media, the pressure they get? They can be bullied on that and different things like that. So, the hosts will be aware of different things like that to look out for as well. It’s a bigger environment that can be missed quite easily.
DEBRA: Is the ultimate goal help people move to be living their own independent lives?
KAREN: It is if that’s possible but for some people it might not be possible. So, I think it’s good to be realistic and I think it’s good for everybody to be honest about what they think they can achieve as well and not to have unrealistic expectations. Because sometimes you can have the support plan that’s totally unrealistic and that can make everybody feel like they’re failing. It’s nice we’ve got hosts saying to us, “Oh but they don’t feel like they’ve achieved that much.” Actually, they have, they can now count their own money. They can go out and buy different things with it. And it might be little things but because they’re within the host, they don’t always see how much they’re achieving with them.
DEBRA: Karen, thank you very much for your time.
KAREN: Thank you.
DEBRA: Key takeaways, it’s almost repeating when I said last week that it’s great to know that there’s options out there.
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