Author Archives: Grace Rojo

Changing Attitudes At WAVE

Podcast Episode 81 By changing attitudes we change behaviour, and this is something the guests on this week’s episode are part of making happen. Celia and Maia from WAVE talk about the ethos behind WAVE, and how it aims to bring people together, and by doing that helps change the way they think and their attitudes.

Celia explains why she started the organisation, what kind of support it provides and how it is grown. WAVE stands for Were All Valued Equally, and Celia explains the importance of this as a value and the way that they break down barriers and reduce the fear some people in the wider community have towards people with additional needs. Maia also talks about her own experiences at WAVE and how it has helped her become more confident and made her feel part of something.

Inclusion is a word used often but not always practiced. WAVE is an example of an organisation practicing inclusion and, by doing this, it really is creating a WAVE for Change.

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Podcast Transcript
DEBRA: Welcome to Episode 81 of the Journey Skills podcast. Over this lockdown I saw an amazing quote which was shared by Spectrum Designs on their Facebook page. It said, “When social distancing is no longer a thing, make sure it’s no longer a thing.” I think this is a pretty powerful quote and I must admit it’s become a bit of a mantra for me as we move forward. And it actually links really well into this episode.

One of the key things I’ve learned in the time that I’ve been doing this podcast is the importance of inclusion. When I talk to people with additional needs, they aren’t so much polling about whether someone understands them, they also not particularly interested in awareness. Not to be flipping but I think most people are aware of different types of additional needs. Actually for everyone it’s been about acceptance. And I think the natural progression from acceptance is an inclusion and the key to inclusion is actually reducing fear. We fear what we don’t understand is the saying. But like I said, understanding something won’t necessarily do that much.

Fear might be quite a strong word when we talk about how people react to think about people with additional needs but maybe it’s not so much about fear as about stereotyping and making assumptions. The things to change– assumptions and attitudes need to change and that’s what this episode is all about.

I’m talking to Celia and Maia from Wave for Change which is focused very much around changing people’s attitudes– bringing them into contact with each other and breaking down that fear and creating an environment where everyone accepts each other and learns from each other. But maybe other people I talked to, this is an inspiring story with few people stepping up and doing something amazing. Of course, this was recorded before lockdown here in the UK, so some things don’t apply anymore but others will apply even more as we all come out of this effective in many different ways.

Many of you listening will be homeschooling as I am. My challenges are of course unique and I suspect there’s quite a few of us that are finding this not an easy thing to do. Like I said previously though for me, the lockdown has, in a lot of ways, been a game changer in terms of where I wanna take the podcast and the ideas that we have for Journey Skils. In order to do what I think I need to do, it’s important to hear experiences and share the knowledge from people like Celia and Maia.

Celia is more than happy to talk to people if they’re interested planning a little bit more about what she does and I encourage you to get in touch because she’s very happy to share her knowledge. And even if you’re not thinking about doing something like this right now for obvious reasons, thinking ahead is key because like what we’ve just found out, we never know when the world is gonna change forever.

DEBRA: Today I am talking to Celia Webster who’s the co-founder of Wave for Change and also her daughter, Maia. Welcome!

CELIA: Thank you very much.

DEBRA: First of all Celia, could you tell me a little bit about Wave for Change, how it got started but also your background and what I guess motivated you to do something like this?

CELIA: Wave for Change. Wave stands for We’re All Valued Equally. And I’ve got 4 children and Maia was my third daughter and I’ve just found that when I had her I felt quite isolated and just felt that we didn’t really fit in anymore into the previous groups that I belonged to in the circles that we mixed with. And I really wanted to find a group where I’m guessing kind of sense of feeling relaxed and a sense of belonging because I found mainstream playgroups quite difficult places to be. People would ask questions or be looking and in terms of development… yeah it was just difficult.

So I asked around to see if there was a playgroup that I could go to with Maia and I couldn’t find any specific one locally, so I decided to start one ourselves which we call the Challenge Group. We started Challenge Group 10 years ago and I got a team of people together and it’s held at our church. I’m a Christian but it’s a wonderful group because we got people who are Muslim, Jewish, atheist, some agnostics, you know all faiths, all backgrounds and we’ve just got this wonderful space where it’s a bit like having family really. The parents have formed very strong friendships with one another and we’re always welcoming to new people.

We can provide one-to-one support for the children with the team and it’s great for siblings as well because often they’ve missed out a bit on attention because many of us which have appointments or whatever. And it’s a really place where people feel very celebrated.

DEBRA: Is that a group for younger children so for parents who have young children, so what age group does that cover?

CELIA: So that tends to be families that have a baby or preschool child but it’s just a question of getting one or two people together who kind of share of passion even if it was just someone sitting, just a place for people feel welcome and relaxed and can chat about either struggles or successes in the week.

DEBRA: Can we talk a little bit then about sort of Wave for Change because looking at your website you have an underlying goal– changing perceptions?

CELIA: Yeah, the Challenge Group that I mentioned is just part of the umbrella of Wave for Change and our whole thing of Wave for Change is a movement for change and our ethos is very much about With not For. It’s about trying to breakdown the barriers of people’s attitudes and practical barriers that can result in people with and without learning disabilities being socially segregated because we feel very strongly that everybody gains from being together and yeah, it’s just great to have that diversity.

What we would love is although locally it’s grown– I think we have over 200 members now in Muswell Hill which is North London– we’d love it to grow outwards into other areas. At the same time I started the Challenge Group, somebody who I didn’t know very well called me. She said she felt God calling her to give me a ring to tell me that that he was asking her to start something for young people with learning disabilities. And so, we became great friends and Venice, the co-founder started Wave Church which is a monthly service for people with learning disabilities although other people come along. And then we’ve also got a partner group which is called Wave Cafe and that got its own charity and that’s now become a weekly place where it’s a community cafe and people of all abilities, all ages come along. Again just a very welcoming space for everybody. A real mix of everyone which is great.

DEBRA: So the Wave for Change is really about sort of support groups you know in some ways, is it? About giving people support around them because you said, as a lot of parents would say– It’s difficult when you have a young people with additional needs. Your friendship group changes. So is that what Wave is mainly a support group because looking at your website you’re also talking a lot about how you can change perceptions?

CELIA: It’s a real mixture because I think it gives families a support in the way that they realised that they’re not alone and that there’s a lot of other people out there who, even if they’re struggling with different things, we can just share things together and help support one another, help listen to one another. And again, I think it’s also brought support to people who’ve come who don’t have learning disabilities. And again, they find that, you know it’s quite rare in society who can turn up and whoever you are, you feel you’re not going to be judged and can actually be loved for who you are as your authentic self.

And I think very much for Maia it’s really transformed her self-esteem, of feeling that she can arrive somewhere where everybody’s is going to welcome her because I think particularly in the teenage years when you go to secondary school, even if schools are inclusive it doesn’t mean that you get invited to birthday parties or things after school. So it’s trying to provide spaces where people with all ages particularly for over 25 as well can come and just get to know one another really.

DEBRA: Can I ask you Maia talk a little bit about what you get from the groups?

MAIA: Yeah, so when I go to the group I really like it that everyone is I say friendly and they’re really welcoming. Everyone is really including everyone in the conversation. And I just really like being part of Wave because I can make new friends.

DEBRA:This group sounds incredibly wonderful and very welcoming, and one word I might use is safe for people because young people like Maia can be accepted. What are some of the things that you’re trying to do or some of the strategies you have to change the wider world because that’s obviously what you’re aiming to do as well. How do you do that, how do you translate from that environment?

CELIA: Yes, I think that there’s a lot of fear around and preconceptions and certainly I was used to be much more fearful before having Maia of people with learning disabilities. In fact, I’ve never come across people, you know I’ve friends who are from different backgrounds and different sexualities, different faiths but just I wasn’t quite sure how to be with people with learning disabilities and Maia has really taught me that. So I think that fear factor and I think that’s why it’s important sometimes to have a (well maybe always) to have a shared activities. So if it’s something like art or yoga, you can be alongside one another but you can take it to your own pace. And again, I think that thing of feeling safe with that of people who haven’t come across maybe or had friends who have learning disabilities, it’s a gradual process.

Sometimes within the community of young adults with learning disabilities, they can be so used to staying within their own safe groups but then, you know can be the reverse, that the same for them as well that you just get in your own natural get to’s and I think that feeling of being open and being able to take it at your own pace as well is important. But we’re learning all the time, we don’t always get it right. We make lots of mistakes but I think again it’s that thing of them being forgiving of one another that sometimes we’ll get it wrong, or say the wrong thing, or do the wrong thing.

DEBRA: So you are inviting people to come into the group, do you guys go out there and say to people “Look, here we are.”

CELIA: Yes, Maia has invited some of her friends where she goes to college to the Wave Cafe Park and then they’ve started coming. And we’re trying to link up with local schools in the area to see if maybe some of their young people might like to hang out in the cafe at lunch breaks or maybe they could come and do some art or if they’re in a band they could come and play or you know, take part in it. Because I think often there such a lack of community and it’s quite surprising when you actually ask people like sometimes we ask local supermarkets, you know if they like to contribute anything, and people actually are often so ready to feel like they want to be part of something. Some people don’t and you have to get used to again people saying no and that’s fine but I think local schools are a good source of asking people if they want to join in.

With the Challenge Group, one of my daughter’s friends does Instagram because I’m such a technophobic, I can’t do it. So I send her the photo. Yeah, just to make it known really. I think a lot of people particularly with the new young baby are isolated and don’t know what’s out there. It’s trying to publicize it as you say in a way where we get a mixture of people. We don’t want to just target groups that have connections with people with learning disability because we’re trying to get away from that idea that we’re daycare center or anything like that.

DEBRA: Yeah that would be a danger wouldn’t it that people would think it’s just a group for people who have additional needs to go to, to do something rather than a group to change people’s ideas.

CELIA: That’s right. You know and again it’s like trying to approach different places like them, there’s a local nursing home nearby that a couple of people have come from to the group and Maia, I discovered, is amazing with people who have Dementia because she genuinely enjoys being with people who have Dementia and kind of.. I don’t know how she does it but is able somehow to gets alongside. So again of that, just diversity and mixing everybody up.

DEBRA: Well it’s a skill to be patient, isn’t it? And most of us don’t have that skill.

MAIA: Yeah because when I am around old people who have Dementia then I’m really good at making them loved and I’m really good at talking to them and finding out how they’re doing.

DEBRA: That’s a definite skill that we can all do with I imagine. What’s the future for Wave for Change? Where do you guys want to go? You’ve mentioned you want more groups, how exactly is that going to work? How are you going to do that?

CELIA: Obviously, we’re still trying to figure that out the best ways to move forward. We would love to link up and move outwards to other areas of London, to other areas of the UK. If there were people who were interested in setting up anything similar, you know, fill it on their website and thought “I’d love to have something like that in our area”, I’d be so thrilled to give advice and you know, they can come and see what we were doing and they might like to do something similar or different, depending on what, you know, gifts or passions for other people had. So we would love it to spread so I think that there are so many other families out there who benefit from something like that.

DEBRA: From what you’ve said, it’s very much about supporting parents. The three areas that I talk about are about relationships, interpersonal, socialising but also about work and also about daily living which is predominantly about housing really, is there any plans to sort of do more around that area?

CELIA: So in terms of the work issue, I run a group on Tuesdays, again at the church, that’s a community cafe. It’s not actually under Wave but it’s kind of link to the same ethos. We sit together and we make soup and then that’s providing a meal for people who come to the church who might be homeless or ex-addicts, or families again, all walks of life.. elderly but again, it’s that thing of changing people’s attitudes that if you sit with a person with disabilities you’ve got to do something for them. And again, that’s a mixed abilities cooking team and I’ve seen people change a lot there because some people are scared of the nonverbal noises that people make. And some of the people who’ve come have got the confidence from just doing that beginning to now working in the local pubs doing cooking and working behind the bar. So just giving people a bit of work experience.

The housing is something we’re looking into and we’re just at the beginning of trying to work with the local council to try and get some social housing at the end of our route for people with learning disabilities. Again to not have that isolation but to feel that it’s a community so we’re really hoping that that might come to something because I think housing is a huge worry for people and with all the cuts and everything, yeah there’s big issues with that.

DEBRA: Yeah because.. I don’t know about you Maia but my daughter doesn’t really want to live with us forever.

CELIA: Do you want to live with us forever or not?

MAIA: Well, I would like to but if I find a flat somewhere in London with one of my good friends then I think I would want to do that.

CELIA: Yeah, that’d be nice to have the choice, wouldn’t it when you’re older. You can choose whether you want to stay home or to move out.

DEBRA: Can I just ask you finally, you’ve touched some all the way through anyway about the kind of things that people could do, but if someone is sitting at home and they feel isolated and listening thinking “Well I’d like to start something like this wherever I live in the world”, give me a couple of top tips that you think you wish you’d known when you started out?

CELIA: I think that thing of not giving up. I think that it’s very hard to think of even starting something up when you’ve probably got more struggle during the day then relatively than a lot of other people but I think that even if you start very small of just contacting one other person who’s like-minded, I do think that sometimes, local faith groups even if you don’t have a faith can be a good supply of people. They might have a heart for wanting to help. And I think that ability as well to know that you are going to make mistakes along the way but then to learn from them rather than to start something and think ‘Oh this is a failure, this hasn’t work and I’m going to give up now”. Just being prepared to make mistakes and I say, Wave would be so happy to hear from anybody out there. We’d be absolutely delighted.

If anyone wants to come and visit what we’re doing or link up and get any advice. I know it can all sound amazed when you look at the website, you know, but there have been so many tears and struggles along the way so I don’t want to close over any of that. And many of the time I arrive, the Challenge Group in tears and that they may have support lead. yes, it’s a big thing to have a team but it doesn’t mean that there aren’t going to be struggles along the way.

DEBRA: Maia, could I ask you a quick question around the same thing? What advice would you have for young people like you that maybe a feeling isolated and should go somewhere to a group like Wave for Change, what would you say to them?

MAIA: I think I would say to them “You guys can come along to Wave and you guys would be very welcomed. You guys would be very included.”

CELIA: And I think it’s having a place where a bit like groups like chicken chick with the drama, you know, it’s a product that people genuinely would like to come and do whether it’s a cooking group so that it’s something that other people might like to come and do.

DEBRA: Thank you so much for your time. Thank you, Celia. Thank you, Maia.

CELIA: Pleasure, thank you very much and we really hope that we might hear from some of your listeners.

DEBRA: Key takeaway– there’s so much to takeaway as what I got from listening back to this episode myself. I’m thinking about how we need to break down that fear and once we do that, real change will become possible.

WAVE website
WAVE on Facebook
Contact Celia

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Developing Transferable Skills

Podcast Episode 80 The average person has between 12-15 jobs in their work life. This makes developing transferable skills an essential part of any employability training. A great example of how to make this happen comes from Sunflower Bakery. This week’s guest Sara Portman Milner, co-founder of Sunflower Bakery, shares their story as well as offering advice to anyone thinking of starting a similar enterprise.

Sara details what Sunflower Bakery does to help young people with additional needs develop transferable skills which they can use to help them gain employment once they finish their training. She explains exactly how the different aspects of the training program works. Sara also talks about the ways in which the training programs build confidence in young people while focusing on helping them in a way that works best for their individual needs.

Sara shares her top tips from her experience with Sunflower Bakery for anyone considering starting a similar enterprise, including finding the right people to help within building the enterprise and also reaching out to the local community. Sara’s main advice, though, comes back to just starting. The story of Sunflower Bakery serves as a reminder of how true the saying is: every journey begins with a single step.

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Podcast Transcript
DEBRA: Welcome to Episode 80 of the Journey Skills podcast. As you might have noticed the podcast temporarily disappeared for a couple of weeks because like all of you listening when we went into lock down, it took a while to get used to this new normal. But we’re back now and sharing another great story and actually a solution as well.

Before I get on with this episode, I want to share a couple of my own thoughts on this new world that we’re living and how that will impact on Journey Skills, at least how I think it will impact on Journey Skills in the long run. I don’t know your individual circumstances but as a parent of a young person with additional needs there are some unique challenges that we all face but we are finally getting into a new weekly routine. And if you haven’t found one for you which are Wix on YouTube, I can thoroughly recommend that as one way to start your day. So we are in routine and actually from my point of view, this is giving a me a lot of time to think about the bigger picture in terms of what Journey Skills was started for. And as you probably already know, three things that Journey Skills is all about which is relationships, work, and daily living and we want to look at how we can join all those things together and help people create a way that we can all move forward and help our young people become independent. So closely it’s been good for me in a sense that I’ve been able to spend some time thinking about how that might be achieved.

One of the things I’ve known just here in the UK at least is being this growing sense of community. So I’m kind of hopeful that that’s going to make a difference in the way that people maybe see the world. Of course the economic impact of this pandemic is going to be pretty major and I suspect would affect many of the charities that work with young people with additional needs. And I think this is all very relevant in this episode where I’m talking to Sara from Sunflower Bakery in Maryland. She talks about funding and a need for self-funding and not to be over relying on charity donations. She also talks about the importance of community and people in local community supporting enterprises. And there’s actually some really high value stuff at the end of this, I think, because she gives her top tips or what they have learned at Sunflower. And I think it’s worth listening just for those top tips because if you are a bit like me and thinking “Well actually the time is right to start something” then these tips are really, really useful.

DEBRA: Today I’m talking to Sara Portman Milner who’s a co-founder of Sunflower Bakery which is based in Rockville in the USA. Welcome, Sara.

SARA: It’s great to be here. Thanks for inviting me.

DEBRA: Can you, first of all, tell me a little bit about yourself and then also about Sunflower Bakery and how it all got started?

SARA: I am a professional social worker by training and also I’m the sibling of a 57-year-old man with Down syndrome. I historically have worked in the inclusion of the individuals with disabilities my whole life and Sunflower Bakery was an outgrowth of my passion to give as many opportunities as possible for individuals with disabilities to find meaningful employment. Our nonprofit Sunflower Bakery and Cafe Sunflower dedicated to providing skilled job training employment for adults 18+ in pastry arts, production baking, barista service and front of house operations.

In 2008, six women, some were professionals in the disability field, moms, interested community members got together to discuss the lack of opportunities for meaningful skilled employment. When we first began to organise, we were keenly aware that federal law in the US required inclusion in public schools but after graduation, then what became of the individuals who are on the autism spectrum, had severe learning differences, communication difficulties or significant attention deficit hyperactivity disorder. What happened then? And we felt that baking would be a great match for skilled employment for a lot of folks with cognitive disabilities who require structure, repetition and learning by showing and doing rather than by reading and researching.

We met with individuals from around the local government county government in the state of Maryland. We also met with private and public disability professionals, work service agencies, and embassy groups to see if they would buy-in for referral and collaboration. We’ve had phenomenal community support I must say and I think part of that was because we laid our groundwork. We’ve even had some market research done. We knew we wanted to operate as a not for profit entity and we were also very aware that we needed to have an income stream as a base in order to attract donors, foundations and government funding sources to remain viable.

In 2009, we boldly started Sunflower Bakery by four of us contributing $500 each to hire a very part-time professional baker and buy us some basic supplies. A generous individual donated money for a sturdy electric mixer. We convinced an area congregation to allow us for use of their kitchen space for 3 hours, 2 afternoons a week and we began a small pilot program offering free training to a few adults with a variety of learning disability needs to see if the concept would even work. The concept did work and within 6 months we outgrew the space and time allotted. We received our first grant from a private foundation and moved to at least 1,200 square foot space with a full production kitchen.

In 2010 Sunflower Bakery’s Pastry Art formally accepted its first students providing a curriculum that covered baking basics, employee development training and serve safe safety and sanitation thing. Early on, we realised that field training in a bakery was not a good match for everyone with cognitive disabilities because the job requirements of employers included concentrated focus on tasks, speed, consistency in quality, multi-tasking and physical strength and stamina. If a student couldn’t independently follow many step instructions independently or not able to lift heavy bags of flour and sugar or very large mixing bowls filled with batter, opportunities were more limited. Yet many individuals were having motivated to work with baked goods. As a result, Cafe Sunflower was created in 2014.

Some of the students who struggle with staying focused on task because they were very chatty in the bakery’s kitchen were perfect candidates for welcoming customers and providing customer service in Cafe Sunflower which was located in a busy office building. The Cafe Sunflower developed a new cafe employment training program that also addresses the cognitive learning of each of the individual students while at the same time providing the opportunity to work with the community, serving baked goods, learning a set of transferable skills for future employment. Training at the cafe includes customer service in front of house operations as well as employee development and serves safe safety and sanitation training.

Since 2010, we’ve grown many folds. As of this spring, we will have graduated more than a hundred trained skilled students. 80% of who have found employment within the first six months after graduation. Just a few months ago, we moved the Pastry Arts Training Program from the original 1,200 foot location to another side and that is 5,700 square feet both a fully equipped training kitchen and has a very large full productions kitchen. There are offices, a break room, a classroom, a computer equipped employee development center and the Sunflower Bakeshop retail area. This is huge for us. What a change!

The current budget which started with $2000 from four checks of $500, the bakery budget now is $1.3M. Critical to both of Sunflower’s training programs from inception has been the concept of inclusion. Whilst students have been trained in smaller environments, they’ve always been inclusive. The goal is to provide the students with the transferable skills they need to move on to competitive employment elsewhere using some or all of the skills learned at Sunflower. Each student takes from their training what they can, developing their own skills and being employed in a variety of jobs in the food industry. They pick what works for them best.

Students in the Pastry Arts Training Program participated in 3 phases of a six-month training. During phase 1 usually 9-10 weeks, they focus on basics from identifying ingredients to preparing a wide range pastry. The 2nd phase for training is for 8 weeks and it builds on each student’s individual strength. We expanded so that they can do multiple batches of recipes and they learn to work more efficiently and independently all the while internalising a sense of urgency. That is not easily done. Most folks come to us and don’t have any concept of a sense of urgency but through time and practice that is gradually developed. During phase 2, the students begin the employee development classes. During phase 3, students are hired as paid interns. Now they’re part of the production. This phase which is also 8 weeks is considered a really important transitional phase before employment. Students are responsible for their production assignments from beginning to end, finishing their work on time or staying late to do so using the time clocking, working alongside other chefs independently. That’s a key.

They also continue preparation for employment by developing resumes, having practice interviews and working together with staff on job searches. We help them make matches and understand their strengths. We have many relationships with employers, if a person has a skill set that matches what we know a certain employer requires, we will recommend that. When it comes to the actual job placement, other service providers in the community have that as their job. Within the first six months, 80% of our students are employed. Do they always stay on their first job? No. If people who graduated from fine universities stick with their jobs after six months? Not necessarily. So just like anybody else, they’ve got transferable skills and they can take them elsewhere to another place that they might feel is a better fit. But everybody has to start somewhere so we make sure they get started in the right direction.

The cafe employment training program provides 3 months of training. At the end of their 3 months, if a student is able to work with minimal supervision, he/she is employed at the cafe for six months and they learn a lot about what it’s like to be employed. A first job, they get all of that out of the way with us before they move on to the next job. They again also have time for 3 months is nothing, they have time to get a feel for what areas they prefer, where are their strengths, where are their weaknesses. So after those six months they move on to other employment that they have the transferable skills, the knowledge in school they need.

DEBRA: Can I just ask a question there? Do you think that’s an issue that often these sorts of enterprises startup and all the great intentions in the world but they’re actually not helping in the long-term because they’re not providing those skills and then put you into workplace? It seems to me listening to you talk about your program that what’s key is that people move on, that you’re training them for going forward and as you said they may not stay in the same job forever but they have got skills to get them a job and move forward with their life.

SARA: What’s hard for me is understand why any of those places wouldn’t take their very first person that they train and be thinking “What is this person doing five years from now?” And that’s what we ask every applicant: “Where do you see yourself five years from now?” We have people who can’t even see themselves tomorrow and we’re asking them so we build it up for them, We provide clues and beginning as in “what if ” to help them understand that they may or may not stay in any job. Again we are really realistic about understanding the people do not have necessarily the concept of time but we think it’s important to just have that introduced.

So any business that trains people and hires them to work for them should have in their own employee development training “What’s next for you?” One of the very first things we have them set their own goals, we help them understand how to set a goal right or even have a clue, how you do that or what that is, we talk to them about things that they might even want to and kind of get them what do you see yourself doing and a first job or a training program gives you an opportunity to dine at the smorgasbord but then you only eat those things you really like you don’t go back and Brussels sprouts if you don’t like them. So it’s important for, I think, any business or social enterprise that’s starting that needs to think what next.

DEBRA: What are some of the challenges that the organization’s faced?

SARA: As a non-profit generated income from sales and program fees as well as fund-raising have always challenging. Income from sales of bakery and programs fees represent 50% of our budget of revenue. So each year we have to raise $600,000 from donors, foundations and other sources. We received no ongoing support from the government. We get 10% in private and agency purchased program fees and 40% are our sales and the 40% percent really helps when you go to a foundation that is more often used to dealing with people who provide services where the income if there is no revenue strains there is no other option and so they really like the fact that we understand that they’re not going to give us something on the silver platter. We have to earn it, not to mention, it’s part of making ourselves known in educating the community that we have sales, that we love the people come the first time for the concept and for the values and for our mission.

We really need it to be so great that they come back for the wonderful products and they don’t see us as a charity program. That they see as chefs and our students as capable competent professionals who are giving them something they really want and need and they’re going to come back. A lot of time has put into fundraising. We wish that we could use more of that time to focus energies on and our resources on training. That’s an issue for us, balancing who we are. The training has to be balanced with production and training always comes first but we have to produce enough in sales to meet our 40% mark yet we have to do fundraising to be able to supplement because you don’t find other bakeries or even in culinary schools wherein an individual student or two students are worked with by a professional that’s how students learn- by 1:2:3 ratio with a professional chef. It makes all the difference in the world.

We have found that challenges that fit right along with that finding staff who either have experience are motivated to have a steep learning curve. We’ve learned that staff members need to have not just in the area of expertise but they also need to internalise our mission into their everyday work and a key to that is having heart which is really hard to articulate as an essential job function on the job description. You have to not just get references on people but you really have to get a feel for them certainly for the chefs and the instructors and the administrators that is key.

Employment for training with a wide variety of learning differences is challenging enough itself. We’ve always wanted to be able to turn the widest range of folks for employment so that they can have more opportunities, as a result we started the cafe for folks who were not a match for pastry arts and we’re currently developing a packing shipping track for other individuals who may find success with skills developed in that area. People order everything online these days and we’ve had requests for products to be shipped around the country and around the world and the new program will meet many of needs. Our experience with COVID-19 has really reinforced our understanding of the needs to fill jobs since so many businesses that are now shipping and delivering products beyond what was ever done in the past. We had already started working on it before who knew we would be dealing with the kind of life we’re dealing with now under COVID-19 but it has reinforced our motivation and our feeling that this is a beginning area there’s going to be really so needed
DEBRA: What are some of the plans that you have for the future for Sunflower Bakery?

SARA: Our plan is to make our program easily replicable to many individuals, organisations and institutions that have contacted and visited us over the years. We want to provide consultation, curriculum, webinars and help people set up such an entity. That way many many more opportunities can be made available for individuals with learning differences to get skill training for employment and other locations far and wide and it’s not magic, it’s not a trick. There’s no secret to it. It’s hardwork. We actually have some top tips for people if they’re thinking about doing this a job and I always say the first thing is you have to look at yourself and the people who you’re developing as a team, what is your level of masochism because you have to know it’s not easy you have to be ready to do the hard work. That said, we have learned some things to make it a little easier for you, you should start with the relationship with an established agency, organisation or funder who handle that part, the financial part, start with a partnership.

We started with none of the above and we really advise others to get that in place first because then you can focus on the people part. Start small, start small but start. Don’t start being don’t increase something huge immediately start small and do a group to get started. Recruit an active and committed board, choose carefully and try to find targeted representation. For example you need a lawyer, a banker, find somebody in the food industry, business person who always talks to you “What’s your business plan?” “What’s the bottom line?”. See if you get an accountant, educator or educators, individuals with disabilities and also you want to have professionals working with people and the disability issues in the larger community.

We found that you should not hesitate to reach out to the community for assistance or help. We have found people are so willing to help. We have more people offering volunteered services than we can use and that’s something they be very careful about. Initially for several years we have the only paid employee was the professional chef, the rest of us didn’t get paid and we had volunteers and we found that as we did start paying people, we needed to use less volunteers because they wanted to do a task that we were teaching students to do and we could not do those. We needed to make sure that always meeting the students’ needs were the priority.

So we’ve developed other kinds of volunteer programs, had other opportunities when we knew we needed extra hands with packing and shipping orders for holidays. We call on this people. We called on some of the volunteers who were in full-time jobs to provide practice interviews with our students. We had other people who are in the food industry give pointers to our students and help them with their resume so that they would be able to emphasise their strengths and their value to any employer. Must tip: Don’t hesitate, start. Do research. Contact key players in the communities. If you don’t take the first step, you will never reach your goal.

DEBRA: Sara, thank you so much for your time.

SARA: You’re most welcome.

DEBRA: Key takeaway– Well to quote a well known advertising slogan, “Just do it”. I think it’s really what I’ve taken away from this one.

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Providing A Compass

Podcast Episode 79 Sometimes we need to change direction quickly and find the right information so that we can make an informed decision as to which road we need to take. This week’s guest Kerrie Highcock helps provide that information. Kerrie is the Family Development Manager at North East Autism Society, and her role is not only to provide support but to help people identify where to find information that is useful for their particular situation.

Kerrie talks about the importance for anyone who has been diagnosed with autism, and their families, recognising that they need support; but it does need to be the right kind of support focused on the positives, not treating autism as a negative in someone’s life.

Kerrie also talks about the need for everyone to move away from awareness and understanding to acceptance. She also talks about the importance of listening and learning from the young person who has the additional need, finding out what they want and for them to be talking to each other because they understand the challenges more.

After all we all need to ultimately be in charge of our own journeys and for some people they need a facilitator more than a carer.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 79 of the Journey Skills podcast. It’d be impossible not to mention what’s happening in the world right now which is changing our lives right this moment and I suspect will be for quite awhile in the future.

I sincerely hope anyone listening back to this episode later in 2020 can reflect on how we got through this by sticking together, supporting each other and I would say to everyone, please stay safe.
My plan is to keep the podcast going as usual and share stories from amazing people. And I know maybe you can’t access some of these solutions for your young person right now but they are there and they’ll be there when the world is able to open up again.

Anyway, this way I’m talking to Kerrie who works at the North East Autism Society which is based in the UK. Kerrie talks about a few issues including diagnosis, about getting the right support, thinking about where you get information from, which is also great advice for where we are right now in the world.
We also talk about moving on from awareness and understanding to acceptance.

And this message obviously doesn’t just apply when we’re talking about autism. This is for everyone who is involved in helping young people with additional needs because really what we all want is.. or any of us want is actually to be accepted. And as part of this idea of acceptance, Kerrie also talks about the need to be more focused on listening and learning from people with autism. And again I believe that applies across the board because even as a parent, it’s not who has to deal with the challenges that my daughter faces, it’s her. So she needs to help drive the solutions that will give her the life that she wants.

Given the world that we are part of right now, it’s really perfect timing to be minded- people that Kerrie out there– making a difference, providing those much needed directions and support when you need them at the right time.

DEBRA: Today I am talking to Kerry Highcock who is the Family Development Manager at North East Autism Society which is based in the UK. Welcome Kerry!

KERRIE: Hi, Debra. Are you okay?

DEBRA: Very well, thank you. Can you tell me a little bit about yourself and also about your role at North East Autism Society?

KERRIE: My name is Kerrie. I have worked in the autism field for around 18 years now. I started off as a nursery nurse many years ago working with little people and then I did my degree around special needs and education and I have just finished in
December last year my masters in education in autism. So I’ve been around in the field for quite awhile. And I’ve been here at North East Autism Society for 12 years now. And my role is very much about supporting families across every diagnostic journey really, so on pre, during and after diagnosis, mainly a lot of times, me and the team get involve is after diagnosis because as we know families get that piece of paper or they get that official diagnosis and then they’re not left with very much information. So a lot of my role is about managing a team and we’re quite a small team actually. Around kind of post-diagnostic models of support so we run parent-toddler groups, we run family support groups which is so important to bring families together. We also do some parenting workshops as well around, you know, just around the introduction to autism really because obviously you know if you get that diagnosis for your child and then you’re left with this word and you’ve never come across it before, well what does that actually mean to you and your family. So we do a lot of that as well. Our team is also responsible for a lot of inquiries that come into our organisation. So North East Autism Society as a whole is quite a big organisation. We have over 800 staff I think at the last count and all the 40 different sites. So we are quite big. I suppose my team within that is relatively small in comparison maybe to our education services, etc. But the work that we do is obviously vital for the families that we support.

DEBRA: Could you just really talk me through then…a lot of people that listen to this will not be at that stage of their journey where they’ve just been diagnosed but what are some of the biggest challenges for parents then when they first get their diagnosis? Because you mentioned there the word ‘autism nobody really knows what does that actually mean’. What do you help them at that very early stage?

KERRIE: I think what we do is we obviously offer a lot of emotional support because if you’ve just got a diagnosis for your child or your adults of course, it can be really frightening. If you’ve got just a diagnosis for yourself so we have some adults that come to us relies of that, just got a diagnosis themselves also. I think it can be really frightening and you would think you know “where do I go, what do I do next, who do I get involve.” So we kind of help them navigate really through the system. It isn’t always an easy system to navigate through. We will find them the right support work possible so we do a lot of signposting on those early days. We also upskill and educate the parents `as well which is really important because we’ve got a lot of misconceptions and myths out there about what autism is and what it isn’t. And a lot of it is very negative so the first things that parents will often hear is negative things about their child. I have a lot of parents that will come to me, they’ll say “Well, the professional involves said about this all autistic is never gonna be able to achieve much in life. Well actually that’s not accurate at all. Your child is unique and they are different for who they are. And you know, what are their needs is to support them just like any individual needs support in different elements of their life.

So it’s absolutely about getting rid of some of their early misconceptions that’s really important for us to make sure parents have got the right knowledge at the right time. And then navigate them through the system, really would any difficulties that they have and often we get kind of categories I suppose of difficulties in the early years or in the primary school years, it’s often around kind of toileting and eating differences, behavior. Things often manifests behavior would actually it’s our job to help parents on pick that behavior rather than label each children naughty or disobedient or non-compliant. We actually need to look at what’s going on for that child or that adult underneath the surface of that behavior. And that’s a lot of what we do. So we’re just really that guiding friendly face really in a world that can be really terrifying for families and of course for the children and the young people themselves or the adults that have just got that diagnosis. A lot of work needs doing there around that, too, I think.

DEBRA: What are some of the unique challenges then if you’re an adult and you’ve just been diagnosed apart from the stereotypes that you’ve mentioned where people assume all `these stupid things, what are some of the other challenges that you find that adults that you’ve dealt with have faced?

KERRIE: I think again that unique adults and to parents I suppose as well is just knowing where to go so as an adult getting a diagnosis, you know, we’ve had phone calls from adults that have just left the clinic and have said, “Look, I’ve just been given this piece of paper and they say I’m autistic. What does this mean and what do I do next?” So it’s about supporting them through that journey. But also, you’ll get adults that have known their whole life that they have been different in some way but they’ve not been able to put their finger on it and for those adults, it’s actually that moment of clarity for them, they’ll get that diagnosis and at last, you know, everything makes sense in their life so we support them around that as well.

A lot of the times, the challenge in around that is actually picking up the pieces because if somebody has gone through their whole life without the right diagnosis, therefore, they’ve not got the right support and the right help, these are often are adults that are then that have you know mental health crises or you know they might have experienced a lot of trauma in their life because maybe they’ve been maybe in the wrong educational settings, things like that. Sometimes, it’s more that support to sign importance to the right mental health services, even though we know autism isn’t a mental health condition. You know it doesn’t kind of fit with any of the specific limits of your life. I suppose a lot of it is trying to piece things back together for them.

I think one of the things as well that seems to be case, the work that we do is getting autistic adults in a room with other autistic adults– that is where the power is because they have that unique neurology. Therefore it makes sense to learn from other autistic adults. I think that is key and I think we all need to look from that the fact that we need to be learning form autistic people, not just so-called professionals that think they know all stuff about autism. I think that’s key.

DEBRA: When you’re talking about the fact that people unlike diagnosed, just wondering whether some people think of themselves “I wish I’d never been diagnosed because now I’ve got extra challenges and all those extra stereotypes.” Does that happen as well?

KERRIE: Probably just happen but I have to be honest, in the experience that I have with adults, it’s usually a relief because I think… (and I think you’ve got a total valid point, Debra. and I’m sure that does happen) but I think the people that I come across are actually relieved because at last, somebody has started to give a label (if you like) to all that stuff that they’ve done that hasn’t made sense over the years so all of the sudden they can start learning about themselves, and you know, understanding “Well, yeah, do that for a reason and actually you know what, I’m not broken” Because so much of what we know about autism, like I was saying, is driven from a very deficit model. So, you know, initially, adults that are diagnosed will be thinking, “What’s wrong with me, what’s the problem with me” and it doesn’t need to be about that. It’s actually autism is just different neurology, it’s often society that disables our autistic adults and autism people.

DEBRA: Yeah, I totally agree. I mean, I was just thinking that some people that because of the negativity around the word, because of people thinking that it’s a bad thing to have autism as opposed to ‘Oh, great! I know now why I do this certain things’. With adults, do you find that there’s more men or women that come that are diagnosed at a later stage, is there a difference in numbers?

KERRIE: I think particularly in, you know if I look at the people that I work with, there is slightly more males that I work with particularly, but that doesn’t mean that females aren’t autistic. I think that’s a really good point because we still have some people out there that genuinely believe autism is a male-based neurology and that’s not accurate at all. I think what was starting to see now is that girls.. males and females first of all, we need to mention wores masks so they’re both socially camouflage, they’re autism if you like and they’ll do things to stop them being autistic and they work really hard to do that. And that can be mentally draining for both genders.

I think what we also know is that girls might fit in a bit easier so they tend to be better at mimicking social cues from other girls, so what they’ll tend to do is they’ll copy, you know, a girl in the class and they’ll do everything that they’re doing because that seems like normal behavior (whatever normal behavior is, we don’t know). I think one of the great examples somebody works in NEAS, a teenage girl may collect all posters of their favorite pop icon and stick them on the wall and they might have millions of posters on the wall, now that’s okay because that’s something girls generally do but if you’re a boy and you collecting (I don’t know, not to be stereotyping) trains for example and the line to fulling your room then that is perceived quite differently, that’s then ‘Oh goodness, this is an obsession and what does this mean for this person’. So, I think as well, we’ve gotta remember a lot of the literature from the early years, you know, the historical stuff was all based on males also so a lot of this stuff that we read has got that gender-bias. But we absolutely have to get rid of these ideas that girls can’t be autistic and that only girls mask because that’s another misconception that seems to be coming out a little bit. People are saying, “Well, the reason girls are misdiagnosed is because they mask a lot”. Well, absolutely, they do mask a lot but so are boys/males mask also.

DEBRA: So again, it’s about stereotypes, isn’t it?

KERRIE: Absolutely, yeah! It’s all stereotypes.

DEBRA: In terms of parents looking at.. it’s difficult because you obviously work with such a diverse age group, but if you had to break down some sort of tips for parents because a lot of people won’t be able to access your services, is there some sort of very general I suppose tips that you’ve thought over the years that parents really should just know straight away? One of them as you mentioned about autistic people getting together with other people and learning from each other, but are there other things that you would say, ‘This is definite, you must do this’?

KERRIE: One of the big things is being very aware of what you reading and where you’re getting your information– from what sources are you actually using. Because you’ve only gotta do it quick search on Google and some really horrendous stuff comes up. I mean, just at the weekend, there’s been a video pushed out again about bleach being a cure for autism which we could spend a whole hour discussing that but that’s barbaric in itself. So I think parents need to be aware of the sources they’re getting their information from. Make sure they’re credible. Make sure, you know, they’re written by autistic people were possible also.

And also, I would say try and learn from your child, young person or adult. Just observe them for a little bit. Try. And I know life is busy but try and take time out of your busy day just to watch them and try and see the world from their perspective. You know, what is it that’s really making them happy, what’s making them distress. Because often, with our children and adults, it can be the tiniest things that make the biggest difference. So try and take 3 steps back and look at the world through their eyes, I think that’s really, really important.

You know, in terms of working through the system that is very complex to navigate through, write things down, have a folder, have dividers in education, health, social, care, whatever it is. Keep all your notes. Keep everything together so that you can go back and use anything that you need as evidence.

And enjoy time with your child and your person, you know. Be around people that really value your child because I have a lot of families that will come to me and they’ll say you know, “I’ll go and visit Auntie Mary at the weekend” for example and they keep saying, “Well, your little boy is naughty. You should be doing this and that, you abide this time” Well, you know what that’s not a really helpful mindset for you to be around, so sometimes, our parents however difficult it is, will distance themselves from other family members because, you know, you wanna be in that positive mentality as well.

I think support groups are really, really useful. I think there’s an absolute plays for support groups and we run them here at North East Autism Society but I think sometimes, they can be complacent it’s worth, there’s a lot of negativity as well and for some people that you need to be in a different mindset because if you just stalking that cycle and negativity, it doesn’t do anything for your own mental health. So, I think choose who you around, where you’re getting your information from, I think that’s really key.

DEBRA: Can I finish on a positive note and ask you if you think things are changing? Because I feel they are changing in terms of people becoming.. awareness has certainly grown, but I think also understanding is getting better.

KERRIE: Yeah, I think we’re making big shifts. We have a long, long way to go but, you know, particularly here we’re getting gearing up for Autism Acceptance Week in April. So that used to be called Autism Awareness Week, we now call Acceptance Week because what we’re actually talking about now is you know, it’s okay being a little bit aware at things but you need to do something about it and that’s where that acceptance model comes in, really. So I think we have more and more autistic adults that’s out there that are able to use their voice in a meaningful way and I think that is okay. I mean, you know, I was saying I’ve done my masters in December and graduated and I do my dissertation last year and it was with young autistic people between the ages of 10 to 16. And what we did was we gave them a platform to say what do you want to say to society about autism. And that was incredible! I mean, there’s the insight these young people come back with was just amazing.

From that, we, as an organisation had been able to develop 3 more autism activist groups for these young people. You know, the topics they’re talking about, Debra is around social isolation, it’s around bullying, it’s around mental health, it’s around feeling you know like you wanna engage in self-harming behavior. So it isn’t all nice topics. It’s raw, real stuff that means things. You know, that is vital to them.

And I think we are getting better at listening but we need to keep going with that and we need to you know shoutout to all professionals that work in the field, (you know, I’m a professional working in the field) but we don’t know everything. In fact, we only know the tip of the iceberg. If you spend some time with autistic people and listen to what they’re saying, I think that’s where you gain your knowledge. That’s where the magic happens. I want to encourage any professional working in the field to have that real open mind and you know, autism isn’t something that you read in a textbook in 1960. We gotta be open and fluid to new ideas and you know new thinking. And listen to autistic people. That’s the important thing.

DEBRA: Kerrie, thank you so much for your time.

KERRIE: Thank you so much for having me.

DEBRA: Key takeaway– It’s really about acceptance which is much better than awareness and understanding. And that’s what we should be aiming for with our young people.

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Creative Community at the CO/LAB Theater Group

Podcast Episode 78 When we go to the theatre we see a different world than the one we live in. Theatre can broaden our horizons challenge our perceptions and this is exactly what the CO/LAB Theater Group aims to do. CO/LAB provides, people with additional needs, a space to be creative and along the way change their perceptions of themselves as well as the perceptions of the communities they live in.

This week guests are Becky Leifman Co-founder of CO/LAB and Liz one of the CO/LAB actors. Becky discusses why and how CO/LAB came about, through the passion of a few friends to provide a creative outlet for a group of people who don’t always have those opportunities. She also discusses the challenges along the way including those around funding. Becky also talks about the wider role that CO/LAB seeks to have in the wider community to educate people about the talents and skills of the CO/LAB actors. Liz talks about the impact that being at CO/LAB has had on helping her develop her skills as an actor whilst also widening her social network. She also talks about the impact CO/LAB has also had in terms of her increased self-confidence.

The CO/LAB Theater Group is not only providing a space for creativity for people with additional needs it is building a community of like-minded people that understand the importance of creativity in being human.

Show Full Transcript
Podcast Transcript
Debra: Welcome to Episode 78 of the Journey Skills podcast. This week we are at the theatre specifically with the CO/LAB Theater Group which is based in New York. More often than not, the topics in this podcast to focus around work and independent living so it’s kind of nice to have a change of pace in a way and focus on something a bit more around having fun.

Having said that, this week’s topic of discussion is as important as a job and having somewhere to live. It’s about building confidence, developing communication skills, finding a place to belong, and helping young people with additional needs not become isolated. CO/LAB is definitely more than just about theater and acting, it’s about community and changing perceptions.

I first heard about CO/LAB from Katie Sweeney who featured in Episode 58. She talked about the impact CO/LAB had had on her son, Dusty’s life. She talked about how they’d helped him develop skills, not just acting skills but life skills. CO/LAB is a pretty amazing project and again, it’s one of those things that happen because a few passionate people decided to go out and do something.

I’m talking to one of the founders, Becky and also to one of the CO/LAB actors, Liz. When I was talking to Becky and Liz, listening to them, it really struck me how simple the solutions that can change people’s futures can actually be. Of course, I’m not saying it was easy to set up CO/LAB, far from that and Becky talks about those challenges. But if you listen to how important CO/LAB is for the actors, and the volunteers and the parents, and carers. I hope you feel as inspired as I did.

Now I’m not about to start up a theater company and neither are you probably, but it did remind me that there is already a need to foster our young people’s creative side. And the benefits to doing that are much more wide reaching than we probably aim they could be.

Debra: Today I am talking to Becky Leifman who is the co-founder of CO/LAB Theater Group and also to Liz who’s one of the actors from CO/LAB. Welcome!

Becky: Thank you for having us.

Debra: Can I start with you Becky? Can you tell me a little bit about yourself and also about how CO/LAB got started and what it actually does?

Becky: Sure. My name is Becky Leifman. I am a co-founder and the executive director of CO/LAB Theater Group. I grew up in the suburbs of Chicago, Illinois and I moved out east to go to college at Syracuse University and at Syracuse there was a program where the drama majors, of which I was one, worked with individuals with disabilities every Monday night and would make a performance. And then when I moved to New York City to pursue a career in theater so did the other co-founders of CO/LAB who are also graduates at Syracuse and we all wanted to start a program like the one that we had at school. So we talked to a bunch of different theaters and a couple of disability agencies around the city just to see if they were interested in hosting a class where we would be the teaching artists and a lot of places said No, every place said No. And we said, “Okay, well we’re just gonna make a website and try and do it ourselves then.” And we started with one class of thirteen actors in 2011 and that we have grown tremendously since then.

Debra: What exactly do you do at CO/LAB? So is it some theater workshops or do you put on performances?

Becky: We have two different legs of programming. We have CO/LAB: core and CO/LAB: connect. CO/LAB: core is our weekly classes and one-off workshops where actors with developmental disabilities come to CO/LAB to take a class so they can sign up for a weekly class and then it will culminate in a performance most of the time. Or they can sign up for one-off workshops which is just like a checkpoint on a specific topic of theater or with a specific guest artists. On the other side of our programming is CO/LAB: connect. And CO/LAB: connect is when CO/LAB teaching artists go out into the community and host workshops at partnering facilities. So we’ll go to JCC in Manhattan and run a hour-long workshop with them every week that will culminate in the sharing. So in those partnerships a lot of the time, the partner is supplying the participants and we’re providing the workshop.

Debra: My next question is actually about the impact that CO/LAB has on people’s lives and families and actors. So, I guess both of you, Liz, you can answer this as well about the impact it has had on your life, what you learn when you work with CO/LAB? And Becky for you as well, what’s the impact being on families and volunteers?

Liz: For me, meet new people and a chance to be comfortable in the acting world. Basically that’s very much it.

Becky: I think what Liz was saying is really the impact that we’re hoping to have is.. CO/LAB’s mission is to provide a creative and social outlet through theater arts. So we really try to have parts of our programming where we are working on both that creative and that social outlet. So the social part being they’re making new friends, they’re in new classes with people every single time. Sometimes there’s returning, sometimes there’s new people. We try to have a couple of community events a year that’s really fun. And then creatively, we hope that our actors are learning how to act. If they already know how to act, building upon those skills and teaching a bunch of different acting skills, dancing, singing. But in class outcomes, I would say on a larger scale, I think that everybody who comes into a class and works with us is developing a sense of community, a sense of belonging. Listen I just had a meeting about this stuff last night actually.

Liz: Yeah! We have class last night.

Becky: And certainly a sense of self-awareness and confidence I think developing throughout these classes. Do you feel that, Liz?

Liz: Yes, definitely! Yeah, I think I’m more aware and stuff like that. And it’s fun!

Debra: That does help, doesn’t it? If it’s fun as well. I wonder for you as well, these skills that you learn at CO/LAB, do you take them outside into what you do in the rest of your day?

Liz: Yeah, like we learn how to take the lead. That helps me a lot like talking to people, my wants, and means and stuff like that. Yeah, definitely helps in real life situations.

Debra: Becky, did you say that also in terms of volunteers? There must be a real sense of as you said community but the volunteers must have learned so much about people that they’re working with?

Becky: Totally! At CO/LAB, the way we’re set up actually is we have a huge volunteer population. We call them CO/LAB supporting artists so they are both supporting the actors and the teaching artists in the classroom. And our supporting artists, a lot of them come like have a theater background and some of them don’t and they’ve joined CO/LAB because they wanna see their outlet and some of them joined because they have a sibling with a disability and they wanna be connected to that here in New York.

I would say a lot of our supporting artists, (I think all of us) really find what acceptance and respect really means within those classrooms. Meeting people where they’re at and all the different ways that you use to potentially communicate with a team. And these are all skills that anybody in the CO/LAB class can bring outside of the room.

Liz: Absolutely!

Debra: Working together and understanding each other and accepting people for the skills that they bring to… I’d imagine everyone brings different skills to theater. The things that they can do better than someone else or specific things so that’s really important and that’s what I guess I like when I hear about CO/LAB. What I like about the whole model is people just working together. Seems to me by doing it, of course theaters are one way to that. Just a question I guess for Liz as well, what is exactly have you been doing at CO/LAB? What kind of theater? Have you been doing acting?

Liz: I do mostly ensemble acting and musical for one semester. I’ve been with CO/LAB for 7 years.

Becky: What skills or specific part of ensemble theater do you remember learning?

Liz: A Hustle over the Crowd

Becky: Sure. A Hustle over the Crowd is how we quiet down our room when things get rowdy and refocus. So what about things like improv and characterized.

Liz: Yeah, mostly improv and character and things like that.

Debra: It’s a big part of your life then the sort of theater that you do with CO/LAB.

Liz: Yeah.

Debra: What are the main challenges in getting CO/LAB up and running?

Becky: Well I’m sure it comes as no surprise that funding is always the challenge. You know, we’ve been around 9 years and every year we have grown both insides of our programs but also financially. And I think one of our early challenges that just continues would probably every single organization is how to balance your bandwidth with your human resources with your program growth and making sure that our cast is supported both financially and from a emotional perspective and has like the right allocation of work in order to carry out our programs efficiently and you know we never wanna lose the integrity of our programs. So we like to grow those at the same time and it took us a while to really find that balance. And then funding is a challenge too, it’s hard when you’re new, it’s hard when you’re young and when you’re applying for a bunch of grants are asking a bunch of folks for money who haven’t had the opportunity to see your work or you don’t have enough materials that your work has been happening long enough. It takes a while to build up trust within that non-profit organization and the funding community.

Debra: So with the funding, you apply for grants and things like that?

Becky: So I would say 80-85% of our revenue comes from foundations, government, and individuals and then on the 15-20% comes from things like ticket sales or CO/LAB:connect program when partners pay to bring us in. We make a little of revenues that way as well but the main source of support really comes from grants and people.

Debra: So the guys like Liz, Liz how did you find out about CO/LAB? How did you come to CO/LAB?

Liz: I came to CO/LAB, there was a place I was at had like a workshop with different recreation things and CO/LAB was one of them. (Like a fair?) Yes, a fair!

Debra: So Becky, is that how you.. you go out and recruit the guys to come and work with you at CO/LAB?

Becky: A lot of our recruitment is truly done through word of mouth. Our actors are our best marketing tool we have and their families. So we have friends quickly because of that but then we also do takeout tables at fairs around the city primarily like disability focus like Liz was saying is if there’s a family fair or recreational fair. We try to set up a table and have people sign up or establish partnerships between organisations.

Debra: In terms of people finding you, they just come to you is there any funding that people bring with them because I don’t know how it works in the US for that, do they bring any funding or do they.. you just literally say someone wants to join you and then “We’ve got the funding available and we’ll just put together package that suits you”. And I suppose leading on to that, do you sit down with individuals and go like “This would be the right thing for you to be doing with CO/LAB”?

Becky: So to answer the second question first, at CO/LAB our core value is that all are welcome and we truly believe and live with that every day. And that being said, there’s no not being right for CO/LAB. We take actors with a tons of different ways of communicating, ways of behaving, ways of acting obviously, with the breathing. And then, to start to answer your first question about funding, CO/LAB weekly core classes are free to participants and therefore the funding that that participants could bring with them, we don’t need in the same way as some other programs that are like solely supported by that participation fee. So we are truly really funded by grants and individuals and that is how our programs can keep running. I would say families that can and want to will donate throughout the year, whether that is the gift amount ranges and it doesn’t matter. You know, whatever support anybody can give we really appreciate it.

Liz: We do like some raffles. It comes with all the surprises.

Becky: Yes, we have a raffle at CO/LABaret.

Liz: And it was like I’m a big winner.

Becky: Yes, she won the raffle so many times.

Debra: That’s so sweet.

Liz: I’m bringing people sometimes in that way. Like my whole table can just get.

Debra: So in terms of the future, (and this is a question for both of you really) what’s the future plans for CO/LAB and also Liz, what are your future plans with CO/LAB?

Becky: So last night, we actually had an advocacy community meeting which is a committee that involves some board members, some teaching artists, some supporting artists, cast, actors, and parents to really make sure that we are getting all of our stakeholders’ voices heard on a board of level and in decision-making capacity. We are in the first year of a 3-year strategic plan. And in that plan, we hope to get out into the community a bit more and understand how CO/LAB fit into this art and disability landscape in New York but also potentially beyond. We are looking to grow our programs and our budget with that like I was saying before. We are looking to push artistic boundaries so offering new kinds of classes, new lengths of classes, new topics, new teachers. Next year is our 10th anniversary so part of our plan revolve around how we can capitalize on that for funding and also how to build our resources towards the future.

Liz: For me, I’m gonna keep on going to CO/LAB as long as I can.

Becky: If we could do a show around any kind of theme, what would you pick?

Liz: I’d pick dogs.

Becky: Hmm that’s a good theme.

Liz: Yeah, dogs and pets.

Becky: Pets? All of our shows center around a theme and one of Liz’s ideas last night was that in 10 years, the actors will pick the theme (which I love). So, Liz, what makes CO/LAB unique?

Liz: Oh, CO/LAB’s unique because they only meet once a week, you don’t have to meet more than that and also they want me to experience the be right thing for like that If they want to sit, they can sit. If they want to stand, they can stand. They can do whatever they want. If you need to walk through the room, you can. And oh, yeah, we have a chart in the room where you can write how you’re feeling. So they know how you’re feeling in the class. What was that called?

Becky: The Mood Meter.

Liz: The Mood Meter, yeah. A lot of fun.

Debra: Thank you both so much for your time.

Becky: You are welcome!

Debra: Key takeaway– the chance to be creative is something we all deserve and we all need.

CO/LAB Theater Group
CO/LAB on Facebook
Theater For All TEDx

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Presumption Of Employment

Podcast Episode 77 When we’re young we think we can do anything, be anyone, achieve everything. But as many of us get older we learn to fit into the box of expectations. For young people with additional needs this box can be small, with many assuming that they will not be entering the employment market any time soon.

This week’s guest Alison Thwaite, the Employment Development Manager of the WorkFit programme run by the Down’s Syndrome Association, does not agree. She offers a much better model of presumed employment.

Presumed employment comes from the angle that employment will happen at some stage and works towards that time. The WorkFit program takes young people though the process of deciding what jobs they might like to do while also helping them be realistic in terms of the skills they have. In addition, they are helped to identify whether there are local employers that can offer the roles they may be suited for.

Alison talks about the wider issues around why young people with additional needs find getting paid employment a challenge, as well as the role that parents play – this can be very positive but occasionally can also restrict opportunities and hinder progress. She also discusses the importance of supporting employers, educating fellow employees, and providing ongoing support to ensure that the transition into paid employment is not only as smooth as possible but is also sustainable in terms of the individual staying in a role and even advancing within the company.

If presumed employment was a reality for all young people with additional needs who do want a paid job, then we really could see an inclusive society where people are valued for themselves as individuals and not for any label they may have been given.

Show Full Transcript
Podcast Transcript
Debra: Welcome to Episode 77 of the Journey Skills podcast. I wanna start this week with the name of this episode because I think it sums up what I hope this podcast can be all about which is changing people’s minds. The name of the episode is Presumption of Employment. Now I didn’t come up with this name, that was in fact my guest’s, Alison Thwaite who is the Employment Development Manager for the WorkFit Program which is run by the Down’s Syndrome Association.

Now I know that some listeners might now tune out only because they might think that what Alison has to say won’t necessarily apply to their young person. This couldn’t be further from the truth because what she talks about applies to every young person with additional needs. And it’s about thinking differently and presuming our young people can and will get a job.

I’m also gonna be pretty honest here and say that I’ve got this one wrong myself. Not to beat myself up too much (that’s kind of unproductive) because it certainly isn’t the case that I don’t believe my daughter will one day get a job. She can, she will, and she believes that she will, which is what is most important. However, along the way, I don’t think I’ve thought enough about the presumption of employment because actually to make presumption of employment a reality requires a plan. If I think about my older daughter, she had a plan– she thought about what job she wanted, she wrote a CV, she went to an interview, and then she got a job. But my youngest is now 18 and we’re in the eye of the storm in terms of finding her work experience. And now she meets the end of her formal education and all the safety and security that provides for her and frankly for us too. Because we didn’t start earlier with helping her get work experience and possibly even find a weekend job, this has been so much more of a challenge. So while we might have presumed employment, we didn’t put a date on it and we didn’t have a plan.

This also brings me to something else that Alison talks about which made me rethink my views. And that’s the role of parents in all of this. Like all of you, I am my daughter’s biggest fan and I think I’m the one that can do it all for her, but what Alison says is sometimes, having that third party between us and prospective employers can actually make all the difference. I wish I had realised this a lot earlier because I think it’s actually true and for all the reasons that she shares in our discussion. Alison talks about this wider issues but she also discusses how the program works and how important the support to the employer is in making the program such a success and keeping young people in their jobs long-term.

One thing Alison did ask me to do and really it’s a no-brainer is to reach out to anyone in England and Wales who knows a local employer or is an employer who’s looking for motivated employees because she has a pool of untapped talent waiting for the right roles with any organisation.

Debra: Today I’m talking to Alison Thwaite who is an Employment Development Manager for the Down’s Syndrome Association. She is going to talk to us about WorkFit, which is their employment program. Welcome Alison.

Can you tell me first of all a little bit about yourself and then also about the WorkFit Program, please?

Alison: My background professionally is HR management and a commercial development and I didn’t know anything about down syndrome until 13 years ago. And then my brother and his wife had triplets and one of their children, Olivia, had down syndrome. And I thought, “Well, I need to find out about down syndrome as a condition. I need to up-skill myself so that I can understand and support her and be the best possible auntie that I can be.” So I joined a local down syndrome support group and that was over 13 years ago. One of the best decisions I’ve ever made. It’s really enriched my life beyond anything I could have imagined. It’s been a really positive experience and as I said at the time I was working in HR management in a commercial development. And then an opportunity came along with the Down’s Syndrome Association WorkFit Program almost 5 years ago and having had a background in recruitment and HR, I thought it would be something that I would be able to contribute to when it was something that excited me very much. So I was successful with my application, started off working as an employment development officer in the North of England and then almost 2 years I was asked to manage the project. The program’s going from strength to strength and I feel very privileged to be involved with it.

Debra: Can you explain exactly what the program is all about?

Alison: Yes absolutely. The concept of WorkFit is to bring people who have down syndrome and employees together with a suitable fit. So that the two elements… to that we work with our job seekers, we refer to them as candidates. We go and meet our candidates and we find out what interests them, what their ambitions are around having a job, what their experience is, what motivates them as an individual– that’s all very important. We do a vocational profile with them to capture as much information as we can. We ideally have a CV from them as well if that’s something that they can provide. And then we look at the different sectors that they might want to work in. What we find is the people who have down syndrome have usually got experience in hospitality, retail, so they tend to think of those sectors that they would like to go into and sometimes part of our role is just to broaden their horizons a little bit and talk about different types of jobs. We have people working warehousing, in museums. You know there’s so many different industry sectors out there that they could find out more about that we can organize some sessions for them.

Then on the other side of that, we have our employers that we work with. So again, we go and meet our employers, we do an assessment with them, we look at the workplace, their culture, things like health and safety and we look at the type of opportunity they might want to offer and we’re very flexible around that. So, some of our employers want to offer work experience placements, some want to offer placement and then we’ll offer permanent paid work, if everything works out. Some just go into offering permanent paid work from the start, and we also support supported internships and supported apprenticeships if that’s what our candidates are looking to do.

One of the things about our work with employers which is very important is the support that we offer them. So we offer a lot of resources, advice, and also training which is fundamental to the success of the program. When we go in, we train the staff within the organisation and we talk to them in a quite a lot of depth about the learning profile of people who have down syndrome, we talk about strategies to help them at work and motivational tools, lots of different aspects that might help them basically to help them to get the most out of and their person who has down syndrome at work.

Debra: What’s the biggest challenge for them? Do you think coming into thinking about getting a job, is it the fact that they’ve got a narrow view of what they might want to do?

Alison: I think that can be a factor but also a low expectations I think play a part. That it may be that through their academic career, they haven’t had people around them who have this presumption of employment for them. We think presumption of employment is very important. We are hoping that from the age of 13, 14 people in their support network are talking to them about what kind of job they might want to do, how will they travel to and from work, has their education help them care plan? So, it’s a lot around expectation and perception of that individual and also the people around them. We want to, you know, nurture their ambitions to go to work and nurture their desires for independence; you know things like independent living can be assisted greatly by them being employed in paid work.

Debra: Something like they get a CV, what are some of the tips that you would offer if they’re coming to you and they haven’t had any experience. How do you go through that process with them?

Alison: We have a section on the CV called personal profile and we encourage them to talk about themselves as individuals. We don’t place as much emphasis on qualifications and experience and things like that because it’s more about placing somebody who’s got an interest in the job and attitude perhaps who’s motivated to do the job. So we wanted them to talk themselves as an individual, what they enjoy, what their hopes and interests are, what areas of specifically of help that they might need just to give the employer a kind of view of them as a person and what to expect.

And then when they come and meet the employer, we support a very informal interview and tour of the workplace to help everybody relax and feel quite informed about the whole process, but it’s nice for that employee to have a CV of whatever format, whatever kind.– it can be pictures, it can be texts, whatever, just for them to have some kind of idea of that person and perhaps have some ideas of what they would talk to that person about when they come in.

Debra: It’s not necessarily having to build a traditional CV, it’s about highlighting their strengths.

Alison: That’s it.There’s so many skills that they can illustrate. You know, if people travel independently, that’s a great skill to have. If things go well, that’s fine and if they manage to cope with scenarios where things don’t go well around travel and things like that, it shows that they have some problem-solving skills, that they have ambition to get to where they need to go and they are quite resourceful in lots of ways. So things like that. An employee can see a lot of skills and abilities in the individual just by them explaining about things they do maybe in their social lives or spare time.

Debra: How exactly do you find the employers?

Alison: We tend to have different routes into employers. When we first meet a candidate and we ask them, you know, what kind of work they’re interested in, we also tend to ask if there are any local employers that they are interested to meet with or go on work for, and sometimes people have a list or sometimes presented with a list of 10 or 15 employers which is really helpful for us and sometimes our candidates say, “We really have no idea, we’re not sure.” So we have some quite strong relationships with quite a number of national employers, the retailers. logistics companies, different people like that who have locations across England and Wales and sometimes we might approach a particular site from one of those organisations that we don’t currently have anybody placed with and just talk to them about what we’ve done with WorkFit, we have the locations in their group that we’re working with and just ask them if it’s something that they’ll be interested to get involved with.

The other option is we take the list from the candidate and we simply call employers, often we tell them about ourselves, what help and support we can offer, we advise that everything we do is absolutely free of charge, we talk to them about the benefits for them which there are considerable number of benefits for employees in terms of getting involved– accessing a great pool of talent, improving staff morale for their existing staff, improving their corporate image. So we talk through all of those options and we can usually get a feel for… if a company’s genuinely interested and if they are we would then move up forward, we would go in and meet with them, do an assessment , talking a bit more detail about the program.

Debra: Do you think sometimes and it’s a lot of employers are more than willing once they’ve realised that there’s actually benefits that you mention because there is a pool of talent, of unused talents, out there?

Alison: Yes, yes. Sorry to interrupt but yes. Employers, I think, often just don’t know how to go about recruiting somebody. They may have very good ambitions around fulfilling the quality and diversity agenda and want to get involved but don’t necessarily know who to talk to, they may not know what help and advices out there, they don’t know about MDWP funding like access to work and those kinds of support mechanisms that are out there in place.

Debra: If someone gets a job and you go and you do training, what kind of things do you cover when you do the training because I’m assuming you’re training the other members of staff within the organisation?

Alison: It’s training for the current staff and in particular, buddies. We advocated a buddy role within the organisation so we ask the employer to maybe ask for volunteers or designate somebody that they feel would be a good buddy for the person coming in who would work very closely. So, we’re looking for a buddy with the right degree of patience and beyond understanding. So then we bring as many people along to the training session as the employee would like and we talk about down syndrome as a condition, (a lot of people don’t know a great deal about down syndrome so we talk about that), we talk about possible health implications, we talk about the learning style which is absolutely crucial. So we talk about structure, repetition, and routine which is very important for our individuals going in and then we talk about we have the buddy stepping back all the time, allowing the person to go in confidence and to flourish and maybe to take on more responsibility if they want to. We talk about various strategies in various anecdotal information about things that may or may not happen and how they might want to deal with it.

But the main message of the training is just to explain that people who have down syndrome are just like everyone else. They have the same dreams, hopes, and ambitions as everyone else. They just want to be part of the team like everyone else is.

Debra: Have you found that extra support is kept people in work because one of the big issues that seems to me is that young people with additional needs can get a job but they can’t keep it because of the challenges being in the workplace? Is the program that you have is that really help them stay within that role?

Alison: Yes, well we commit to supporting that individual and the employer for the lifetime of their employment with that organisation. So what we tend to do is our support initially is quite intense, as you would imagine, and then you know the length of time between us doing reviews tends to lengthen. Once we’ve had somebody established in a permanent paid job for 2 years, we tend to not go in and do it face-to-face review because we are confident that everyone’s happy, things are going well but what we always say is we are available at the end of the phone, or at the end of an email or if people want us to come in either party wants us to come in, we’re more than happy to do that. But yes, that on-going support is very important. We don’t just, you know, hand somebody across to an employer and say “There you go, this is your new employee. Thank you and good night.” We wouldn’t do that, especially on those first few weeks since people get to know each other. You know, something might have done an employee might call and say “Oh this happened today. We were a little bit unsure how to handle and what to think”. But to be honest, it doesn’t happen very often because we tend to cover as much as we possibly can in the training session to see, you know, “If this arouse, you might want to do this or you might want to do that”. But we do stress it’s all about getting to know the individual, that’s very important. And getting to know what motivates them, what they enjoy, what keeps them happy, what they’re likely to respond to and being very positive at work.

So I think, if we feel as though we’ve done a good job with the training and given the employee and the buddies as much information as we can, it’s very rare that we get any kinds of issues. It tends to be more an external issue. We’ve had some challenges for people who have gone into work but then they’ve had bereavement plus somebody close to them had a major issues in their personal lives something like that tends to impact on them at work which is very understandable.

Debra: But that would happen to anybody I’d assume. So it’s not that unusual, is it?

Alison: Yeah, absolutely.

Debra: Because your program is obviously very structured and there’ll be lots of people listening to this who can’t access it, what are some of the tips that you would have for parents who have a young person and they want them to have her believe that they can get a job, what kind of things could they start doing with them?

Alison: It’s very important to have to just to go back to that expression of the presumption of employment. To talk about what they might want to do, what they might enjoy, what they feel good about, you know. We talked to candidates about friends and relatives and what they do and often, you know, they know there’s mum and dad go to work, brothers and sisters go to work, they may not necessarily know all of the details but they know that they want to have experience themselves, they want to feel good about themselves, they want to be part of their community, they want to earn money, they have bills to pay, they want to spend money on holidays and various other things. So, it’s about setting the scene, setting that expectation, instilling in them the desire if you like and the motivation to go to work and the rewards that come from that.

Debra: In terms of practical things, how do you think people should approach employers because if they haven’t got your, I guess, infrastructure. Is there ways to talk to employers? Do you think to sort of make and see that this young person might be a good fit even if it’s just for work experience? Because that is a pretty big issue find work experience often for young people who have additional needs.

Alison: I think sometimes employer are slightly hesitant if approached by a parent because they worry that parents will be quite protective which of course they will be that’s quite understandable. I think they sometimes worry that parents won’t be quite as objective and may not understand sort of their business needs if you like and you know, they don’t want to come over as not being supportive and don’t always know how to interact necessarily with the parent. And I think having a third party like WorkFit or another supported employment agency is very valuable in that respect in terms of being able to get all of the benefits to the employer and being that sort of meddle man that go between if there are any issues or concerns, that person steps in to get involve between the employer and the family. So I think sort of genuinely quite keen to do with a lot of employers just worry the dynamics. They don’t want to upset people, they don’t want anyone to feel that they aren’t doing the right thing. So having that third party is quite important in my opinion.

Debra: Yeah and also possibly parents then reassuring the potential employer that they’re not going to be that helicopter parent that’s going to want or expect, what you’re saying, want them to have everything…

Alison: It just makes it a more… a smoother process shall we say it. And as well, the employee feels more reassured because we have the experience of developing opportunities and being able to talk about things that might happen. So I think it is very reassuring for the employer and the family to have a supported employment person involved.

Debra: What does the future hold then for WorkFit? Where are you guys heading?

Alison: We are a team of 9, we’re quite a small team and we cover the whole of England and Wales with that team of 9 people. Obviously, Down’s Syndrome Association is a charity so we are relying to donations and charitable twists and different funding streams to be able to continue our work. We aren’t in the position to call it the whole of England and Wales which is a shame but at the same time we don’t have the constraints around resource. So we work very hard in terms of supporting as many candidates and employers as we can to get the outcomes that they want. And I think the future’s very bright for WorkFit. We’ve had a lot of rewards particularly in the last 3 years, we’ve been recognised by a number of learning disability charities and supported employment governing buddy which is the British Association of Supported Employers. You know, we’re very fortunate that the model is recognised as one that is very effective and delivers a lot of great outcomes. So, I can only see very good things for WorkFit. I think it will go from strength to strength and it’s just wonderful to see so many people have their career and ambitions realised.

Debra: Must be changing perceptions as well within the employers because I’m assuming that the more young people that go and work for these (even the larger employers) the more people around them understand that they just like everyone else and they just want to work.

Alison: That’s right. It’s so important to you know if you go into a local retail outlet or a local restaurant or wherever you see somebody who has down syndrome working there, we wanted to be just the norm that of course somebody would be working there why wouldn’t we be there. You know, we wanted to be accepted and not for it to be an exception. So the more people that we have in work and part of their community , the better.

Debra: Alison, thank you so much for your time.

Alison: My pleasure.

Debra: Key takeaway– start the planning early so that presumption of employment is well planned for.

The WorkFit website
WorkFit Blogs
WorkFit YouTube channel
Become WorkFit Employer

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Getting Ready For Work

Podcast Episode 76 For many young people with additional needs finding a job can be incredibly challenging. It takes planning and for most requires them to go way outside their comfort zone. This week’s guest Dr Michael Reiter runs work readiness workshops and he talks us through the three areas he focuses on to help the emerging adults in the group find and keep a job.

Michael talks about the importance of setting goals and making sure these are SMART as well as identifying the types of jobs a young person might like to do but also has the required skills to do. He discusses the interview process and the fact that as much as this is about the practical things like being able to answer questions it’s also about the ability to manage your own anxiety. Interviews are stressful for most people so ways to help manage that stress, so you still are able to perform at your best is a key part of finding work. Finally he discusses how they address the after you have the job issue looking at the social skills required in a workplace and how to manage those.

Michael talks about the need to have realistic expectations around work but for the emerging adults he works with using this approach he is actually providing them with a realistic change of finding and keeping a job.

Getting a job for our young people will probably never be easy but by helping them prepare properly, using a model like this, and giving them greater autonomy to plan their own work future we are helping increase the probability it will happen one day.

Show Full Transcript
Podcast Transcript
Debra: Welcome to Episode 76 of the Journey Skills podcast. This episode our topic is all about work. I’m talking to Dr. Michael Reiter who runs a work readiness group. I came across Michael via Main Street which is bringing housing project and I spoke to Jillian from Main Street back in Episode 60 and Michael’s group was mentioned in the Main Street newsletter as an example of resources available in the area. Now obviously most of us can’t access to groups like this but I reached out to Michael because I thought he might be willing to share some ideas. And to be honest, he pretty much shares his blueprint for what to cover in a group like this.

He placed the work readiness group downing to 3 areas; the first is about goal-setting — finding out what young people want to do using SMART goals. We already do this a little bit with our own daughter in helping her set goals (or be it just for the week) but just to give her an idea of what to do and how to do it because we do it ourselves. The second thing that he covers in the group is interview preparation. Although he talks about in terms of actually alleviating the anxiety that going to an interview can bring so it’s all about managing that sort of anxiety.

I’m kind of hopeful in some ways that this issue might actually become less of a problem in the future because there are now many companies that understand that face-to-face interviews aren’t going to help our young people, not going to showcase their skills, and certainly not show what they are capable of in the actual workplace. But saying that, most of us will still need to help them out when it comes to preparing for an interview at some point.

And the final part of what Michael talks about is after getting the job is staying in the job. And that’s the big challenge. This really is a big issue and to use a cliche, It’s a game-changer when you have in place support for employers. And most successful employment programs I’ve seen such as the one that Team Domenica runs (which we talked about in Episode 45) inclusion element of employer’s support on the eyes on of the employees in some ways. And it provides that extra step and keeps the young people in their jobs which is what we want.

So Michael talks us through those 3 areas in terms of how he works with the young people in the group. The other thing that I found that really interesting in my conversation with Michael is the way that he uses the term ’emerging adults’. I actually never heard anyone used that term before. And it’s a term I really like because I think it kind of sums up what all about our people young people go through. They take a bit longer to get things, they take a bit long becoming to adulthood. And the idea of an emerging adult — it just kind of resonated with me.

Michael talks about a few resources and I’ll put those in the show notes. He talks about The Holland Codes Test, he talks about the Occupational Outlook Handbook, and he also talks about Stages of Changes. So these things are those in the show notes if you wanna have a look and find out a little bit more.

Debra: Today I’m talking to Dr Michael Reiter who is a Licensed Psychologist based in Maryland in the US. Welcome, Mike!

Michael: Thanks for having me, Debra.

Debra: Can you tell me, first of all, a little bit about yourself and then also about what we’re going to talk about today is actually something you do called an Employment Readiness Group.

Michael: Sure, happy to do that. I’m a clinical psychologist and I practiced just outside of Washington, DC. I received my degrees from The George Washington University and my training background is generally in family systems and cognitive behavioral therapy. And generally, I work with teenagers and emerging adults who are struggling with navigating their next steps. This could be while they’re in high school or post-secondary, some of my clients have gone off to college and they’ve returned home and are regrouping, some are yet to leave the nest. They’re often underlying challenges that are contributing to why they’re having a hard time moving forward. Some of those could be anxiety, social anxiety. I see a lot of OCD, depression, executive functioning challenges such as ADHD. I do see some clients who have autism spectrum disorders or challenges with social cognition, social communication.

In terms of how I came to working on developing this group, over the years I’ve worked with a lot of young adults who struggled with navigating the employment world. Thus, I want to put a group together that help them navigate the employment process but also addresses some of the underlying issues that might be getting in the way of them moving forward. So in some ways I think about this group as a therapeutic employment group which is a blend of vocational rehabilitation and supportive employment curriculum with cognitive behavioral therapy and also helping participants understand employment world as a social world and how to navigate it.

Debra: Can you just talk me through then what you do with the group? Do you have a schedule of I guess workshops that you run through or people just come along and you talk about issues for that particular person? Or how does that actually work?

Michael: Well, when someone will call me and show interest in a group, sometimes it’s the parents of the emerging adult and I’ll invite them to come in front and take appointment. So, just be one meeting where we get to know each other a little bit and I get to learn more about what their goals are. At that point, we decide whether the group seems like be a good fit for them or not. And at that point, I also assess if there are other supports in the community that might be more appropriate for them. If it seems like the group is a good fit, then they’ll sign up and it’s a 15-session group, we meet twice a week for about an hour and a half each meeting. There’s a parent meeting in the beginning of the group, that’s to orient them to the curriculum, answer questions they have about the group and most importantly so they can ask questions and we can talk about how they could support their emerging adult in the group. I think all parents are eager to help their young adults in the process and find it hard to know how to do so. And they’ve tried to work together in the past and sometimes that works well, sometimes it doesn’t. So we talk that through at that time. And also, I think them knowing that we’re gonna be covering certain topics here helps them feel more relaxed at home that we’ll be working on some of the goals that they’ve been trying to do at home on their own. Parents also get offered a meeting at the end of the group where we can provide feedback to them and talk about the next steps and come with a plan for what the participants will be doing later on.

I’d loosely break up the group content into (of the fifteen sessions) into three categories; the first third of the group is geared more towards goal setting, self-exploration, and being prepared for the application process. I’d say the second portion of the group focuses on anxiety management, interview prep and practice which is important for a lot of reasons including exposure, facing our fears, getting feedback from your peers. The third portion the group is geared more towards social communication at the workplace, so managing difficult situations, communicating with your coworkers, with your supervisors.

So we start off with SMART goals which are basically goals that will orient everyone to what they wanna accomplish during the course of the group; their specific, measurable, achievable, realistic and have a time frame associated with them. We talk about what those are, people do worksheets and bring them back in for the next meeting. And then we learn how to.. we take a Holland codes test. We learn how to do that. It’s a vocational career interest survey and we use the Holland codes results to guide us through what’s called the Occupational Outlook Handbook. That’s basically an encyclopedia that the Department of Labor and Statistics in the United States has which gives a listing of job occupations and vocations and what those jobs do, how much they get paid, how do you get that job, what kind of training do you need, and also some more occupations. So really is a self-directed job search. So it’s interest-oriented, you’re not telling someone “Hey, this is what you should be.” This is more of “What your personality type looks like would fit for you in the future, now let’s go search some more”. So we started off with that. We do some worksheets on the benefits and costs of work which gets us to the motivation for wanting to work.

We talk about stages of change where is everyone in their stage of change. So the stages of change are pre-contemplation, contemplation, action, maintenance, relapse and it’s an interesting conversation to have. We discuss our vocational supports so those referred to our family to maybe outside supports, coaches, therapists what are the aspects of support that we need, what are the aspects of support that we don’t need as much, how do we communicate those needs to those around us. We learn about stress and coping with the process, how do we manage stress, we call that The Stress Tolerance. We share our strategies, we discuss new strategies that might be useful for the process of looking for work. Looking for work as a stressful process and if you’re struggling with mental health issues or disability it’s even harder, so it’s a really important conversation. So, so far this first third of the group is getting us ready and prepared for the process; orienting ourselves to what we want to be doing or what we want to be looking for.

And then we do a little more hard skill development. We spend some time in resumes and cover letters and talking through tips and strategies for organizing the search. We do a lot of peer feedback at this point. We talk about the application as a social engagement. This is something that I think is really important. Well, a lot will think, we think of applying for jobs as you just like find that online and then you click on that and you submit and you wait to hear back and that’s maybe the first step but after that, you have to start talking to people, whether it’s through email or through phone calls or in person. And we have to like really navigate this process as a social engagement and I think that can be really scary and a foreign world for a lot of people and that’s where I think people tend to get tripped up sometimes. So a lot of the group really focuses on demystifying that and helping people understand what the steps are and managing the underlying issues that been getting in the way of that. So I’d say that’s the first third of the group is focusing on orienting ourselves and setting goals, coping with the process and getting our resumes and ourselves right need to take that step.

Debra: Can I just ask a quick question about that. Do you know you think that often young people who have additional needs are not very good at setting goals. They’ve never really thought about setting goals because I think it’s a hard thing to do anyway for most of us, but, do you find that that’s something that they find particularly challenging — setting goals about what they want?

Michael: Sure. I think it’s very hard. I think that that’s one of the struggles that I notice happens when someone comes to the group, they had a hard time with setting their goals and not achieving them and then it feels like the goals are unachievable. So part of this is helping individuals learn how to set realistic goals and to break them down into smaller steps that are more achievable. But we’re talking about working with young adults who may not actually know what they want to do and that’s okay. So I think that it’s okay to not actually know what you want to do and maybe the goal is just to get some experience and part of this is also expectation management. It might be that these emerging adults who are coming here or anywhere else are thinking, “Oh, I need to have my career lined up. I need to know what I wanna do” but that may not be the case, it may not be realistic. So I think that sometimes we need expectation management.

Debra: Can we talk a little bit about the parents because I think that’s an interesting thing that you mentioned before about you support the parents as well and that that to me seems a really essential, doesn’t it? The parents have to be kind of on-board and helping the young person at home but you did mention that often parents don’t know what to do. What are some of the tips you would have for parents just in a general sense of being able to help their young person with some of the challenges?

Michael: Yeah, it’s a good question. It’s a hard question to answer a little bit but I think that one of the things that I would suggest is to think about autonomy. I think that sometimes the parents and the emerging adults that caught up in a sort of power struggle about the process and moving forward. And are trying to help but that help isn’t necessarily coming across in a positive way even though it’s help that is needed or maybe wanted by the emerging adult. I think it’s important for parents to think about how they can support their young adults without it feeling like they are telling their young adults to do something. So how do we support our emerging adults without undermining their own motivation. And all the people who are coming to the group are motivated to move forward but then what’s going on at home that might be undermining that and I think being transparent about that motivational process or undermining motivational process that’s going on with parents. Here we have that discussion about self-determination theory. That’s the theory behind it and I talk about it with the emerging adults as well and we try to come together so everyone can understand what people’s intentions are in the ways that they’re trying to support each other. So, I think for parents to be mindful of how their support comes across is important.

Debra: So the first step is the setting of the goals, and the second is said the process of how you apply. Was that right?

Michael: I’d say the second section I would loosely put into a category of anxiety management and interview practice. And I would say this is maybe the most important piece. Once you have the foundation of what you’re looking for hence, coping skills in place to navigate and to start the process, you really have to manage the anxiety associated with the actual process of looking for work. It can be really stressful. I hear a lot that sitting down and looking for a job, figuring out how to answer questions on application, aside from the actual interview and meeting people and communicating and knowing what to say can be really stressful. So I take very much a cognitive behavioral therapy approach which we learn about our anxious thinking styles, we learn about positive self-talk, cognitive thinking ways to use self-talk to work through these stressful applications and the process, we learn about avoidance variables. The whole group itself from beginning to end is an exposure because you’re forced to face the idea of looking for work.

But this section here really talks a lot about exposure and facing your fears because when we have anxiety, whether it’s the primary issue or it’s a secondary issue, and by that I mean someone might have social anxiety that’s a reason why they’ve had a hard time with the process or maybe someone has ADHD and they’ve had a hard time engaging the process because of executive function challenges but because of that they’ve developed some anxiety about the process. Whether it’s primary secondary issue, it could be a lot of anxiety and which creates avoidance and then we need to learn how to face that fear and the group really teaches individuals about that process and we start to practice it. So it’s an anxiety management aspect here where we’re learning about how to manage anxiety and stress.

And then we practice interviews; we prep for, we dress for interviews. Everyone comes in, we do it a few different ways so we can try to get different experiences. The first what we do is we use actually Zoom video conferencing and I have someone in one room interview with a stranger, in the other room the group watches the interview and afterwards everyone is able to give feedback on the interview including the person who is conducting an interview which is very unique. Often when you have an interview, you don’t understand or hear any feedback to why it didn’t work out. So this is really important.

Then the recorded interview is sent to the participants so they can review it themselves and I also review it and give additional feedback later. Then we also do in-session practice where we pair up and interview each other and the group watches and then we also do fun practice where we call each other from different conference rooms. So we do in a variety of ways all which are targeted towards giving feedback. I think it’s a really important aspect of the group so that helps a lot with the anxieties.

Debra: Because it’s interesting you say that because it’s a little bit of a move I think for interviews be a little bit different because some people really find it a massive challenge to go through that very, I suppose, systematic process of sitting down there, answering questions. So there have been a number of companies haven’t there that talk, that do something slightly different to give people.. because you do not always see skills, do you, in an interview with them sitting and answering a question if they’re not very good at answering questions?

Michael: That’s right. It can be very hard. Yeah, we talk a lot about the difference between soft skills and hard skills. Sometimes I think some people tend to lean on their hard skills, sometime in interview answers sometimes they lean on their soft skills. So we talk about how they can help describe what their abilities are.

What we do is we have people research a job that they want to apply for or they’ve applied for and they do the interview for that job and then when we do it practice interviews again we actually interview over and over again for the same jobs to really refine that skill set.

Debra: And so what’s the final third then?

Michael: The final third focuses more on this idea of once you have a job, maintaining work; workplace communication, healthy work relationships, self-advocacy. So in the last portion of the group, we talk about handling difficult conversations with peers and supervisors, how you might manage workplace conflict, boundaries at work, social skills in the workplace. We talk a little bit about workplace accommodation, so how you might qualify for those or ask for those at the beginning of the process or once you are already employed, assertiveness. So that’s the last third of the group.

Debra: Because that again, that’s quite interesting as well because a lot of people will get a job and then they won’t actually keep it, will they? Because they can’t deal with the day-to-day challenges that work brings.

Michael: Yeah that’s true. That’s where someone might benefit from ongoing supported employment so our long-term support. And that’s something that the group doesn’t have which is the group I think has a lot of benefits. One of the benefits of the group is that you’re with peers and if you’re with peers then there’s accountability and I think that’s the important piece of being in the group. I think that one of the downsides of the group or any group is that you don’t have the ongoing individual support afterwards. I think that the model of having a group such as this combined with individual support, whether it’s from parents (this is why we involve the parents in the process afterwards or family members or if it’s a job coach or an agency that’s working with the individual) to continue the support that you’ve already received. And there are a lot of supports available at least in our area here for individuals with disabilities. The unfortunate thing is that there’s a service gap. Sometimes the individuals who are struggling don’t meet the requirements or their disability isn’t significant or severe enough to be eligible to access those services.

Debra: Do you have any sort of success stories that you could share with us?

Michael: Yeah, I can’t get to specific but I do think that we’ve had… this past group, we had some success actually about 75% of the group went on by the end of the group had a job, full-time or part-time. And I think that part of that was due to the accountability factor in the group. It’s one thing to be accountable to a parent, therapist or coach but I think it’s different when your peers are doing something that you’re supposed to be doing and you know you have to talk about it with them in two or three days and also getting the feedback and having that peer support of knowing others are having the same struggle.

We did have successes this past round in a group where individuals got their jobs of choice that they wanted to. And I think that had to do with also being realistic about what they’re qualified to do and being motivated and wanting to do it.

Debra: What do you think has been the biggest challenge for the young people that you’re helping?

Michael: I think for me, one of the biggest challenges was working through the group topics and curriculum while also tailoring to each participant’s needs. The group is the group. So if someone is able to continue to pursue looking for work on their own without additional individualised support, then that’s great but they’re not. And they need that support then it might be a little harder for them. So I think that the challenge is having a comprehensive support for individuals who need that support and pulling that together so having a team really for the person.

I think that in general the challenges that I see are the emerging adults understanding how to navigate the future. I think that when you’re in grade school and high school, the world is basically organised and structured and given to you. Here’s where you have to be from 9-5 or whatever your school hours are. You know, here are friends, here are your social activities, here’s what you’re doing before school, after school, you have to wake up and go. And then when you go off to college and to work, these supports slowly get peeled away and how to do it on your own becomes more and more foreign. And if you have social anxiety or if you have a social, communication, or cognition challenge such as autism, then you’re really like in a foreign world and you just don’t understand how to navigate it and I think that’s where the challenge really comes into play. Then that’s really the goal that we have here to really try to be a part of the process of helping that out.

Debra: Michael, thank you so much for your time.

Michael: Thank you for having me, I appreciate it.

Debra: Key takeaway– For me personally it was to listen more and to empower my daughter to think more about her own future; to help her take ownership or as Michael says to have more autonomy in deciding what she wants to do in the future.

Dr Reiter’s Group
The Occupational Outlook Handbook for self-guided career interest searching
Holland Codes Test
Autism Speaks Employment Toolkit
Stages Of Change

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Planning A Future Without You

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
Podcast 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!

Carol: Hi.

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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Managing Mental Health

Podcast Episode 74 We all appreciate the importance of good mental health but sometimes lack the toolbox and even the support to consistently achieve it. This is often the case for young people, particularly those with an additional need. In this episode we are talking with Kimmy Obo from Kooth a UK based organisation offering an innovative way of delivering support when and where young people want it.

Kimmy explains what Kooth offers and how it supports young people particularly at those times where they are not sure who to reach out to. Kimmy also discusses healthy coping strategies that young people can use to manage their mental health and activities that contribute to positive feelings of well-being.

Kooth is an innovative service taking advantage of the benefits that technology can bring to all of us when used in the right ways. But even with the use of technology it is all still about people reaching out and supporting each other reminding each other as Kimmy does that we all have good and bad days and we all need to work on our own positive mental health.

Show Full Transcript
Podcast Transcript
DEBRA: Welcome to Episode 74 of the Journey Skills podcast. This week we’re talking about mental health and innovative way of enabling young people to manage their mental well-being, get the support when they need it, learn from other young people, and do it all in a non-invasive way.

I’m talking to Kimmy Obongonyinge from Kooth which is a UK only based organisation. So I imagine some of you are now thinking “Well, that’s not much used to me” but bear with me, although maybe you’re not surprised because if you’re a regular listener, you’ll know that we pretty much go around the world. Maybe you’ll even be like me and have the same thoughts that I often have after listening to a few episodes all from the same part of the world and thinking “Right, we need to move there.” There was certainly a moment for me a while back when New York was top of my wish list but I hope that’s what’s unique about the podcast and that we’re sharing so many stories and solutions from all around the world and not everything will apply to everyone, not every story will resonate with you, not every solution will work for you. But even if they don’t, they inform you and I think in every single case they inspire you. It’s all about learning from each other and realising the possibilities out there. And it also gives me hope that somewhere young people are getting the support that they need to live as independently as I want to.

So it’s really about sharing and there are so many people and organisations doing the work needed but all too often we’re unaware of them. Of course, they can always be more options and I know there is a long way to go until we get all the changes we want but it isn’t quite the days I’d imagined when I started up this podcast. So please become a collaborator and if you have an idea, don’t start it without looking around to see if there’s someone gone before you, that someone that you can learn from.

This conversation with Kimmy, she offers some practical tips about how to help our young people manage their mental health, also I think there’s some wider issues that play here, it’s about looking at how technology can aid our young people and make independence a probability, not just a possibility. Many of us, myself included, have a very much love-hate relationship with technology. It does all for our young people better options for independence. My own daughter’s independence is been really aided by being able to use things like contactless payments and accessing online train timetables but then, of course, there is a dreaded social media minefield that presents its own challenges as well.

But in this interview, we see how technology can be utilised into something that could connect people in a positive way. Another thing I’ve been flipped by saying that it probably saves lives as well. This is an amazing idea and I kind of imagine it will take too long before it expands into a much wider audience and helps more people and supports more people with their mental health.

DEBRA: Today I am talking to Kimmy Obongonyinge who works for an organisation called XenZone which is helping young people with their emotional well-being. Welcome, Kimmy!

KIMMY: Thank you, Debra. Yes, just a bit of introduction, my name is Kimmy. I’m incredibly passionate about mental health. I had been since the age of 13 so it’s really great to be working for mental health company like XenZone which provides this really wonderful national service that I’m gonna be telling you more about in a moment. So yeah, I just want you guys to know about it, to know kind of that it is available to you and that it provides completely safe space. It’s very unique to a lot of other services. So yeah, I hope you guys log on later and find this information helpful.

DEBRA: Can you just tell us a little bit about you said you’re passionate about helping people with mental health, can you tell us about your background and how you got to work for this organization, really?

KIMMY: When I was growing up, I was really interested, I’ve always been interested in kind of pediatrics and supporting young people but like most young people, I kind of didn’t know which direction to go in, but when I was diagnosed with ADHD, then I was kind of going through the process of diagnosis and that is when I first kind of really became passionate about mental health because I start to look into my own mind and kind of how my behavior and mental health was linked to things like that.

So yeah, then I studied Psychology at college, I then went on to study Psychology at university, I did an undergraduate degree and when all I came out from university, I worked in a mental health crisis centre called the Haven Centre and where we’re supporting young people who would describe themselves as in mental health crisis, a lot of them did have additional learning needs. We did get a lot of young people with autism, we got a lot of young people with dyslexia and things like that because there is definitely a link between sometimes additional learning needs and mental health as well. It’s because there’s a lot more first to consider if you’ve got an additional learning need.

And then eventually, when my contract was up I went for 3 months and did an internship with the aid support organization there to learn about the relationship between physical health and mental health. And then when I came back, I was looking into jobs and I came across this really amazing role in XenZone where I get to go into schools, raise awareness of the service as well as provide mental health provision in those schools. So that’s how I got involved with this organisation.

DEBRA: Can you tell us about the organisation and what exactly they do?

KIMMY: XenZone is a mental health company but with a twist because a lot of it is about digital mental health support. The reason it came about as an organization was because we saw that actually was this huge gap in mental health provision because a lot of it relies on you being able to meet with individual safe space but we know that actually there were a lot of different barriers that individual’s experience when accessing mental health services and one of the biggest barriers that people experience is just that discomfort of meeting with a complete stranger the first time feeling like you have to divulge and give away all this kind of puzzle information about yourself about your deepest fears and concern with a complete stranger.

So we thought you know what let’s actually create a service that looks about how we can reduce those barriers, let’s make it an online platform. So if we do get an individual who does really struggle from anxiety, who maybe doesn’t feel super confident in social situations, they have a space in which they can talk to someone about how they feel and get support and don’t necessarily have to leave the comfort of their own homes. So we provide the service. At the moment, our strongest service is Kooth which is for (and our most developed service) it’s for young people but we’re also developing service for adults called Qwell in addition to a service specifically the students called Kooth students.

DEBRA: So exactly what happens… what’s the process if someone… so this is all done online, so do you have people online? How does it actually work?

KIMMY: So with Kooth, there’s no voice involved, there’s no video calling involved because we know that just as adults, we can feel a lot of anxiety when it comes to calling people and video calling and things like that. So, we’ve actually made it all what we call asynchronous messaging which is very fancy way of just saying text messaging.

So the way that a young person, if they are looking for support and they do wanna talk to a counselor, the way that they would do that is to something that looks very much like an iMessage conversation or Facebook Messenger conversation or Snapchat conversation, it’s all text-based.

DEBRA: So they just go on the website and they type in their concerns and then someone will come back and feedback to them?

KIMMY: Not quite. So what happens is the young person will type in then go to kind of the homepage and they would have the option from there to sign in. When they sign in, they have to select the place they live because we are already available in very specific areas of England at the moment because we’re funded by those local authorities. And then the young person would put in other data about themselves, about their age, their ethnicity, and how they perceive their gender. We never any point ask for their name or their exact address. We just ask the place they live so for example if you’ve got a young person who goes to school in London in Harringay, that box there, they’d put Harringay area.

And then once they’re logged in, they have access to loads of different resources, peer-to-peer support as well but if they did want to chat specifically to a counselor, maybe he just wants the space to vent, you could go to Chat Now option which is very, very big and bold. There’s no way you can miss it. And from there, you’re going to small waiting queue. Usually, the wait is from 5-10 minutes, and when a counselor becomes available, they’ll let you know that you have 5 minutes to jump into a chat with them and then from there, you would get the support that you need. And the first kind of conversation would be a very informal assessment just to find out what your concerns are, what is your level of need, what support you want over the next few weeks.

DEBRA: So what kind of things do people contact Kooth with? What kind of concerns do a lot of young people have?

KIMMY: So we got a lot of young people who are struggling with anxiety. I think that in itself is one of the more common mental health disorders that we’ve seen in young people today and that is definitely reflected in the young people that utilize the service. We get a lot of young people who are struggling with exam stress and anxieties around exams, stress around options and often linked to anxiety.

We do see a lot of young people talking about some harm and looking for ways to overcome or to find a more healthy coping strategy. So we get a lot of young people using it for various reasons but I think the most common is definitely anxiety.

But we do get a lot of young people who in situations where you kind of feel like “I don’t know who I can talk to, I don’t know where I can get support from”. We get a lot of young men involved in gangs utilizing our service because they don’t know where else they can get support and it is a completely safe space because it is completely anonymous. Those young people who know that actually they can talk to someone and this information isn’t gonna leave that safe space. So we do get a lot of young people who are involved in situations where they might usually feel like there’s no one who can understand or relate to them and might not know where to go to for support.

DEBRA: Is there a sort of set of strategies that… say for something like anxiety, is there a set of strategies that you guys would recommend people to sort of start with?

KIMMY: So generally, a lot of what the counselors do is to empower the young people to be engaging with face-to-face services and school counselors and things like that or talking to parents, talking to friends about what they’re going through but our counselors are all highly qualified and trained staff so a lot of what they do is not so much talk therapy which is someone what we perceive counseling to be but actually it’s all about being proactive and actually managing your mental health so the counselors will go through cognitive behavioral therapy technique, dialects behavioral therapy techniques (DBT) to enable the young person to kind of look at the things their lives that are causing them maybe stress or anxiety and then go from there, looking at how they can kind of disassociate anxiety with those things that make them feel anxious and maybe helping them to have a more positive perspectives of those things that make them feel anxious rather than focusing on the negative thing.

DEBRA: So you said there’s resources as well available on the website, is that from other people talking about their own experiences like case studies or is that again tactics strategies? What kind of things do you have available?

KIMMY: So there’s a variety, we have a space called Kooth Magazine. I mean, it’s a really great space, we have a huge and a really collective community of young people who use this space. I mean, it’s a space for young people to write an article maybe, to write stories, spoken word piece, a rap, whatever it is that they want to do to express how they’re feeling. So it doesn’t even necessarily have to be directly about mental health and well-being. It could be about a topic they’re passionate about so, for example, the other day I saw a really great article on Black History month where a young person was talking about why it’s important to her and educating other young people on why maybe they could engage with things going on to their community that was related to Black History month.

So, it provides people with a space to share things that they’re passionate and interested about but directly if we’re talking about mental health, there’s also loads of things that young people post on that space relating to mental health so I saw a really nice poem the other day it was called Dark Poem and it was written by a young person who was sharing their experience of depression and loneliness and it was really great because at face value you might think actually that’s really negative but actually, it provided this young person with a space to express how they were feeling and also it provided other young people who are reading that with the opportunity to know that they weren’t alone. That if they ever feel that way, that actually there are other people that feel that way.

So there were comments underneath the poem like Thank you so much for sharing this, it’s really brave of you and there were other comments that said I know exactly how you feel and this is what I do in those situations: I listen to music, I go to the gym, I do this. It’s a really great platform for peer-to-peer support. And then we also have forums as well where young people again can express how they’re feeling in one place under a theme and other young people can comment and post and give advice and strategies on how to deal with that.

DEBRA: And obviously, it’s a much safer than the sort of broader online forums that young people can access generally.

KIMMY: Yeah, definitely. So everything on Kooth is monitored 24/7 and we do something called pre-moderation. So before an article goes up, before a comment on the site goes up, it’s moderated prior to that so we can make sure that the site remained safe and supportive. So nothing will go out without being monitored by our online team if we do think something’s not appropriate we’ll send you a private message and just say “Hey, maybe you want to rethink how you say this.” just because we want to remind you that this is a safe and supportive space. So there is no opportunity for any abuse or anything like that to be on the website because it’s pre-moderated. All of our articles are also monitored by our clinical team as well to make sure that the support and advice that’s given on them is appropriate and is safe for young people too.

DEBRA: Just to talk I suppose in more general terms because as you’ve said this service is only available in small parts of the UK and we’ll come back to where you want Kooth to go in the future but what sort of suggestions would you have for a young person or a parent more likely listening to this and they’re concerned about the mental well-being of their young person who has additional needs. What kind of strategies or what kind of suggestions would you have in a more general sense?

KIMMY: So I think the first step for a parent and for a young person who’s going through a mental health challenge would be to acknowledge that. We all have good and bad days, that mental health is something that every single human being has and just like we can engage in activities that improve our physical health like eating healthy food and exercising. And there are lots of things that we can do, practical things that we can do every day, to contribute to a positive mental health. And also acknowledging that you might be feeling really rubbish today but you might not feel the same way tomorrow. A lot of mental health conditions they’re not chronic, you might be depressed, you might be more vulnerable to feeling depressed but actually there is always a way out.

So this is in general things that I always advise young people to do. They’re really practical and really easy things. They don’t require to go out of your way in any way, it’s just something that you can put into your daily routine to achieve good mental health. And one of the kind of top thing is to get seven to eight hours of sleep. So I know it sounds really, really boredom, really general but sleep has a huge impact on our overall well-being and sleep is important because it enables our bodies to repair, to be fit and ready for another day but alternatively, the lack of sleep can make us grumpy, it can make us feel really rubbish just emotionally and it can make us difficult for us to focus and learn. And regular poor sleep can have a huge impact on our physical and mental health as well going on to the future. That more often than not, a lot of young people aren’t getting seven to eight hours of sleep and that in many ways does contribute to poor conditions like depression and anxiety because your body is not having the opportunity to repair and recuperate.

Another tip would be to try and engage with your hobbies and interests and if you don’t do that already, to find something you can engage with, to find something that you enjoy doing. There’s so many opportunities in your local communities, so many things that young people can access for free, whether youth group or music group. There’s so many things that young people can be doing to keep their minds healthy and to keep our bodies healthy as well and it’s really important to engage with our activities that we enjoy. Even when life is busy because I know when life is busy we can avoid doing the things that we can enjoy or we can neglect those things because we’re trying to keep up to date with our homework or coursework. Then in the process we’re not taking care of ourselves. It’s really important to encourage your children and to encourage your friends or to just to encourage yourself to get out there and to make time for those things that you enjoy doing.

It’s really really important as well to stay organized. So these, like I said, they’re very very general things but staying organized is one of the biggest contributors to anxiety. We get a lot of people using Kooth who anxious because of exam stress because of course back stress, and a lot of the time they could have prevented themselves from being in that situation just by remaining organized.

And just a final tip is to avoid avoiding things that make us feel comfortable or anxious. So today, like I said anxiety is one the more common mental health disorder in children and young people and in adults as well. And many of us avoid the things that make us feel anxious but by avoiding those things that makes us feel uncomfortable and anxious, we’re actually not helping ourselves at all because we’re not training ourselves to build the resilience we need to overcome those situations and it can mean we missed out on a lot of great things and the only way to overcome anxiety is to face it head-on.

I’m not talking about jumping straight into a situation that makes us feel super uncomfortable and super anxious but rather trying to slowly expose ourselves to those situations where we go anxious. So for example, maybe school makes you feel anxious and because of that you’ve been avoiding going into school for a significant amount of time. Instead of avoiding school, maybe try going in one day a week over a couple of hours a day to slowly get yourself back into the routine and build up the resilience to deal with that situation.

DEBRA: Okay, because you mentioned before about the fact, a lot of people are lonely, do you think that even though we’re connected in a social media sense, it seems to me that particularly for young people with additional needs, they can get lonely anyway because they’re sometimes cut off from their peer group because they don’t necessarily have the same freedoms to go out and do things. Do you think that’s a real big contributor? People feeling lonely and thinking that they’re the only person that has felt like that?

KIMMY: Definitely. It’s definitely one of the biggest contributors to depression because we’re then left with ourselves and our negative thoughts that can kind of spiral out control when we’re on our own. So it is really important, but alternatively, there are lots of things that young people can get involved in. Even if you do you have a physical disability and maybe you do you feel trapped in your own home, you feel like you physically can’t get involved in things. There are a lot of opportunities in your community that are accessible for you to get involved in and there are loads of young people that can relate to that feeling of loneliness regardless of why they’re feeling lonely. Sometimes it can be difficult to fight but it’s always worth logging on to your computer or talking to your teacher or your home school worker or whoever is to find out what opportunities are available to you because it is really difficult to go through life on your own. It’s so important to be talking about how we feel but we can’t do that if we don’t have people around us and a network of people around us.

DEBRA: Which is I think why your sort of service is so unique in lots of ways because it can bring people geographically, you don’t have to be there, you can just log-in. Which kind of brings me to the final part of what I want to ask actually was around, what’s the future for the organization because I understand that you get the funding from parts of the UK but being an online service, do you see that being you’re able to offer that service in a much wider geographic way?

KIMMY: Yeah so I mean, actually there are very few parts of the UK that aren’t covered by our service at the moment. The service we provide, it isn’t specific. We don’t, for example, offer one level of the service to some areas and not another to another. We provide the same service in every single area that we’re funded to operate in but the service is undergoing a lot of exciting developments. We’ve got an amazing contract with a charity that supports deaf young people. So our counselors are all undergoing training at the moment to communicate with deaf young people because we understand that the way that you guys communicate via message– the structures and sentences are very different to how we would construct our sentences if you’re not deaf. So when the moment our counselors undergoing that training which is really exciting so we’ll be accessible for deaf young people who are a vulnerable group. I mean, who do struggle more with loneliness as well.

We are really trying to make sure that our service is able to support young men, they’re one of the target groups that we have at the moment. So we’ve got a lot of feedback from young men across the country to find out how we can make sure our service can be more engaging and accessible for them. And we are always working with young people to constantly develop our service. So our service changes a lot from year to year because we’re constantly getting feedback from people and we have Kooth ambassadors as well who provide us with all the feedback too, on how we can make sure that our service stays current and up to date and accessible for all young people, essentially.

DEBRA: Thank you very much for your time, Kimmy.

KIMMY: No problem. Thank you for having me.

DEBRA: Key takeaway? Mental health support can be delivered successfully in different ways in this case online. I think it’s an important takeaway because there’s clearly funding issues around mental health and support that are out there so this is a really innovative way to be able to do it.


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Learning to Relax

Podcast Episode 73 Emotions are part of being human. But for many of us there are times when we wish we had better tools to manage our emotions. This can be especially true for young people with additional needs who often face extra internal and external emotional triggers. In this episode we hear from Dana Bishop a Relax Kids coach on some of the strategies that can be used to not only manage the way we feel but to harness these feelings and increase our mental health wellbeing.

Dana shares the 7 steps model of Relax Kids explaining each step and providing examples of how has used it. The steps model work around the idea that you can’t just decide to relax but rather you need to go through a series of steps which will help you get to that relaxed state you are after. Some of the tools Dana talks about are one’s we have all heard of like breathing exercises and affirmations but she provides a timely reminder that it’s the simple ideas which are still the best.

Being able to understand and manage emotions is key for our young people in their daily lives and a skill that most will need to explicitly learn. The Relax Kids model of understanding that to relax is a process not just an end, and knowing what the steps are, will be for many people an invaluable addition to their emotional toolbox.

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Podcast Transcript
DEBRA: Welcome to Episode 73 of the Journey Skills podcast. I recorded this episode a while back but kept it in the bank so to speak because I felt this would be an ideal one to put out just before the Christmas holidays in preparation for a period that we can all find a bit emotionally overwhelming. But it’s also a time where we have more time to reflect, more time to spend together, and to do the kind of things that we’re talking about in this episode.

I’m talking to Dana Bishop about the Relax Kids program. Dana is a Relax Kids consultant and she shares the 7 steps that the Relax Kids program actually uses. Dana was just really sharing some simple tools and I think it’s really easy to forget the simple tools are often the ones that work the best. So she’s just talking about things like affirmations, and this is one of the things I took away from talking to Dana. And I’ve actually been working on this with my daughter. And it’s a really simple thing to have affirmations everyday but it can make such a difference to a young person particularly if they have some confront issues.

There is some other great ideas she shares as well so I hope you get something that you can takeaway and use over the holiday break. Of course Relax Kids is a business, so I should say that this is not an advertisement or endorsement of the program but also like to say that I really appreciate Dana being so generous in sharing her knowledge.

DEBRA: Today I am talking to Dana Bishop from Relax Kids. Welcome, Dana.

DANA: Hello.

DEBRA: Can you tell me, first of all, a little bit about yourself and then about Relax Kids?

DANA: I got involved with Relax Kids about 18 months ago now and I found out about it through a friend who has got a daughter with medical needs because my son himself has got long-term health conditions and was really struggling with his emotions and he was saying horrendous things that he wanted to die and he just wasn’t coping with life at all. And we weren’t actually getting any support for him emotionally. So I thought I need to find something to help him.

And then my friend told me about Relax Kids which I hadn’t actually heard of. It’s actually been going for 19 years, believe it or not, but still some people don’t know about it. And I looked into it and I thought this is what he needs. So about a year later, I did the training and very quickly I noticed that the techniques which I’ll talk about in more detail in a moment, was starting to help my son deal with his anxieties. So really, it’s been absolutely fantastic, not just for him, but our whole family, for his brother as well who was hearing these horrific things that my son was saying. I wish I’d find out about it sooner, really.

DEBRA: So can you talk me through, say for example someone comes to Relax Kids, what’s the process and where do they start?

DANA: So, Relax Kids follows 7 steps. So we take children from high energy through to relaxation. These 7 steps include movement, play, yoga stretching, self and peer massage, affirmations, deep breathing techniques, and relaxation. And to find that it’s a natural.. the steps, take children then from not suddenly being high energy to expecting them to relax really quickly. You’re more naturally coming down to relaxation by following those 7 steps. When I carry out the sessions with children that by the time you sort of get to the stretching and the massage, they’re starting to calm down getting them ready to go into the deep breathing and the affirmations and relaxation. So all sessions follow 7 steps.

DEBRA: So, the 7 steps, can you just go through them and talk about what happens in each step?

DANA: Yep, so for example we start with movement and play. This includes high energy and fun and games so children increase in their heart rate, might to do with some team building with the group and really the movement and play are the two lively steps. But if I was doing this with a one-to-one (because I do one-to-ones as well as groups) what I tend to do with the movement and play is I include quite a lot of games where I’m getting to know the child. A quite mindful games like Jengga or Solitaire and I’m talking to the child as they’re playing as well. And often children, when they’re playing a game, they don’t actually realize that they’re opening up because they’re more relaxed.

So I adapt the sessions because obviously the games that I might play in a big group of children aren’t always going to be suitable for a one-to-one and actually I work with a girl who was nonverbal and what I did for the movement and play part was I used a lot of sensory activities. So we played with multi-coloured rice, pasta, slime that actually really enjoyed the sensory aspect of it because obviously the normal games that I would have picked into place weren’t necessarily going to work with her being nonverbal.

And then we go onto the stretching which is basic yoga stretching to stretch out the body and awaken the body ready for the rest of the session. I’m not a yoga teacher but I’m able to teach them basic stretches. And these can actually be really good because you can adapt them again for the classroom. So, say for example, a child gets seem restless and all their hands are aching with lots of writing, I can teach them exercises to stretch out their hands or stretch up to the ceiling. Just things that they can do that they’re seated instead of having to move around. So again, it can be really adaptable.

And then the feel part is the massage, which actually, with children as well that I’ve worked with sensory issues and the parents might say to me, “I don’t know if they’ll like the massage.” I’ve actually found that the massage is often the favourite part. And I teach them how to do a massage on themselves like a relaxing phase massage or hands or feet. Or if sometimes in my sessions, it might be the whole family session or with a sibling. I’ll teach them how to do it on to each other or if the parent isn’t there, I’ll teach the child how to do it so that they can do it on a parent or parent can do it onto them. And we include massage because again massage can be really relaxing and really lovely bonding activity between a sibling and a child or a parent. And again, if a child didn’t like massage (I haven’t found that yet), I would adapt it in a way in which I say, “Well let’s do it on a teddy bear” so that they don’t have to do it, touch themselves if they weren’t too keen. But I do actually find that they really enjoy the massage.

And then we go onto the deep breathing technique. I say that this is one of the really important steps because it’s the deep breathing that can really help to calm you down. And I sort of explained it, when you’re taking the deep breaths, it’s because you’re focusing on that breath, that you’re concentrating on that instead of being really whine up or angry or really anxious about something. And I make it in a fun way, so we use feathers. Yesterday with a little girl, she was blowing her worry bubbles away. We use things like a breathing ball, which basically is showing them visually what’s going on with a diaphragmatic breathing because when they’re breathe in, the ball goes out and when they breathe out, the ball goes in. So it’s very visual.

So I’m not just necessarily just making the child sit there and just do deep breathing, I make it fun. And as I said I think the deep breathing is one of the most important steps. And things like hand-breathing where they trace up and down their fingers and I’ve had one little girl who was going back to school having been home-schooled. Her mum was saying, “She would sat in the car, focusing on doing her hand breathing before she went into school.” And again, that’s something that you can use anywhere because obviously some of the things like using the feathers and the props, that’s not adaptable but you can just use your hand breathing under the desk. So, I include activities that they can use anywhere as well.

And then we move on to the affirmations. And a lot of children have absolutely no idea what affirmations are. So I explain to them, we call this step Believe actually. The affirmations are about saying kind words to believe in yourself. And they’ve often find this quite strange at first because saying to yourself, “I am amazing, I am calm” can be quite alien because you might have somebody saying positive things to you but teaching somebody to say positive things themselves is quite new for them.

But I say things like looking into a mirror so you really believe in yourself. And my youngest little boy from four years old, he would really confidently do this because he started from so young. And actually, that step I find really powerful with my eldest and his health issues because one of his conditions is he’s got a really severe skin condition and he gets very itchy and he would keep calling us and calling us for help but now he would say, “I’ve said my affirmations, I’ve said I am calm. I can do this but mommy I’m still itchy, can you help me?” So, he’s really using those to help him. I often give children affirmation cards at the end of the sessions to take home so they’ve got the visual representation or I put them into my boys’ lunch box so they can see it at school. So affirmations are really powerful.

And then we end with the relaxation. And the relaxation, we use books from Relax Kids and relaxation is obviously great as the word says the relaxation book. Fantastic also for children using their imagination because all of their meditations are written around themes like amazing hues, the happiness way. So I had one child recently who said to me after the relaxation, “My goodness, I was really there. I was really in that worry balloon. I could really feel myself and see myself there.” So, it’s fantastic obviously for relaxation but the imagination side of it as well, it’s fantastic.

DEBRA: So, you say you’d deal with younger children, when it comes to older children, how can they use the same sorts of things?

DANA: So Relax Kids is really adaptable. Some coaches going to care homes and do relaxation with elderly people with Dementia. There is a specific program for 10 year olds and sort of going into the teenagers called Charge Up but we still follow the 7 step techniques but obviously it’s adapted to the older age group.

DEBRA: Have you found then some of the children you work with, they’re starting to use that without you being around, they’re using all these techniques. All the techniques or do they pick out, you said about the breathing techniques, do they pick out individual bits or do you think they’d run through the whole thing or they just find something that they can relate?

DANA: I think what you’re saying is true actually that often there might be one aspect of it that really touches a child and it might be like with my son, he tends to use the affirmations a lot and then I got a message from another parent who will say, “Oh, so they really practicing their breathing and they love using their worry bubbles or the different props.” or again, another child loves using the relaxation books. So I think you’re right. Not necessarily that they follow those 7 steps because actually when I do a session whether it’d be one-to-one, community, family, or in a school, they tend to be 45 minutes to an hour long, so for a child to sort of run through that themselves is a long amount of time.

So, it seems to be that they dip in and out of what is the favourite step or again the massage actually I get quite a lot of parents who say, “Oh, we’re loving the massage. We’re doing that every night as part of our routine before we go to bed.” So I think it is more… I think the most popular seems to be the massage, the breathing, the affirmations, and the relaxation because I think with the movement, the play, and the stretching, that tends to be something they’re doing more as a group or as part of the 7 steps. I mean, they might use these steps– the stretching in school if they’re at their desk and they’re getting restless but I certainly think that actually the more calmer step are the ones that they’re using more often.

DEBRA: Because the other ones they don’t necessarily need all the time…

DANA: I think that’s what it is actually and they find the movement and the play, and the stretching— they’re great because they’re part of the 7 steps but I think, often my feedback (because I ask for feedback sort of at the beginning and end of my session) they love those steps but they’re the more lively and fun steps and I think you’re right, the other steps they’re using to put into place when they’re in those difficult situations and struggling with those difficult emotions.

DEBRA: This seems like quite a simple idea doesn’t it? Going from a very stress to unstress but having those different steps. Putting you on the spot, do you have a favourite? Do you think there’s one that actually you find makes the most difference to people? I know you said your son prefers affirmations but is there one that you think for example parents who are listening to this could take away and go actually ‘Just use this one and this will really help you straight away’.

DANA: I mean I think I love the relaxation because I remember when I first started doing this, we live in such a busy world. You know, everybody having to work and juggling work and school and being parents and children have a really busy lives with all the after-school clubs and hobbies that they have. And actually seeing children laying down at the ends, snuggled up with their blanket with cushions and cuddlies and often now laying there for a walk can be up to 15 minutes, relaxing and calm, I found that really powerful and I know that Marneta, the founder that was one of the main reasons that she developed and created Relax Kids because she was actually a clown and she was doing children’s parties and finding that even in a really sort of fun, lively situation the children just weren’t focusing on her as an entertainer and she just sort of “What is going on?” So when you’ve actually got those children calm and listening to a relaxation and being at the moment, I find that really powerful with us all having such really busy lives.

DEBRA: But when you say that, it does sound like you couldn’t get to that last point without doing a couple of the other things.

DANA: You’re right. I do think that the seven steps definitely are created because they get you to that instead of some schools are really trying their best I know with all the time constraints that they’ve got and the children were coming from the play time and they might say “Alright class put your head on the desk.” and trying do short relaxation but the children are so sort of whine up and lively to suddenly go from being lively to put their head on the desk and trying to relax is really difficult which is why the seven steps work. But the relaxation can be still really effective by itself. It just does work better if part of the seven steps. Saying that at bedtime using the relaxation, Relax Kids CDs or the books can be really effective at bedtime. You know, when you’ve got to that calm place with maybe bath and reading and then putting on a Relax Kid CD or using one of the books. One of them as well the Dream Machine is more interactive where the child goes on a mindful journey. There’s a hundred thousand different story options and there’s use of meditation, the breathing, the affirmations and even though that is more interactive that one is really popular as well for bedtime. So you certainly can use it as a standalone step and I think once a child has been introduced to the 7 steps, they are then more able to use it by itself but I’m just saying especially when you’ve got a big group of children to get them through to those seven steps through to the relaxation is just more effective because it’s their natural energy state. Especially for doing it at a different time in the day when they may be more lively.

DEBRA: Can you tell us about the resources that are available, you just quickly mentioned there books but what else is, where would people go to find out more about Relax Kids and what resources are available for them?

DANA: So for example you can see the store on there with all the different books that have been written. There’s a fantastic new book coming out. Right now I think it’s in pre-launch called The Imaginarium which is going to be brilliant for the teenage age group. There’s also cd’s on there as well. And also, there’s often free resources for example a 21 day program for relaxation. October affirmations so you can print that out and read different affirmations. There’s usually at the beginning of the year an affirmation calendar for the whole year. So there’s lots of different resources on there. There’s also our Relax Kids Facebook page and also I’ve got my Relax Kids Facebook page which is Relax Kids Tadworth and Walton with Dana and I often put ideas on there and resources but the, there’s a lot of information and resources on there that parents can buy and use at home.

DEBRA: Dana, thank you so much for your time.

DANA: Thank you.

DEBRA: Key takeaway? Often solutions aren’t just one thing, sometimes it’s steps to solutions or a few different things working together.

Relax Kids
Dana’s Facebook Page

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Attracting The Best Person For The Job At Specialisterne

Podcast Episode 72 Everyone has unique skills; everyone is a specialist in something. This is something this week’s guest Thorkil Sonne from Specialisterne understands completely. Specialisterne translates from Danish as “The Specialists” is an organisation focused on helping young people with additional needs find meaningful employment. The focus is on matching the skills of the individual with the role not trying to make the person fit the job.

Specialisterne have also developed a unique approach to assessing the skill of individuals in a way that enables them to showcase their individual skills as well as show how they work in a team. This is in recognition that traditional interview approaches limit the opportunities for young people with additional needs to fully illustrate what they are capable of.

Specialisterne also work with employers proactively, to not only help them maximise the skills of their employees but, with practical support around what reasonable adjustments might be necessary in any workplace.

Specialisterne also has a much wider purpose than just helping people find work, they are on a mission to show employers how they are missing out on utilising an incredible pool of talented individuals with specialist skills that could give their organisation a competitive advantage.

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Podcast Transcript
DEBRA: Welcome to Episode 72 of the Journey Skills podcast. This episode, I’m talking to Thorkil Sonne from Specialisterne which is an organisation that aims to change people’s mindsets around what makes a great employee. Thorkil explains why and how Specialisterne came to be, but this one to highlight a couple of things that I think are really important. The first is about the interview process. And speaking for my own personal experience with my daughter, I can already say that a formal interview process won’t really bring out the best in her. It won’t show potential employer what she’s capable of. So one of the innovations that Specialisterne has is an interview process that actually doesn’t include an interview.

And second, the idea of training and supporting employers. I think this is really key when it comes to increasing employment options for young people with additional needs. There are already schemes out there that help people get into work. The challenge for many seems to be staying in their jobs. And one reason I think for this is (and this is really coming from speaking to lots of employers on the podcast interviews) is an employers need to be trained as well and they need to be supported. And making this a key part of what we do to increase employment opportunities is in my opinion key to going forward because as it is being said by many people on the podcast, it’s about understanding, it’s about awareness, it’s about acceptance– acceptance of an individual’s skills, acceptance of the individual, and also seeing what they bring to the workplace and to a team. And Thorkil talks about that as well. Certain more about how Specialisterne is helping employers to harness the under-utilised talents of so many young people.

DEBRA: Today I am talking to Thorkil Sonne from Specialisterne which is based in Denmark. Welcome, Thorkil.

THORKIL: Thank you, Debra.

DEBRA: Can you tell me a little about the story of Specialisterne?

THORKIL: So 20 years ago, I was technical director in an IT company. The traditional family life– 3 kids. When my youngest son was diagnosed with autism, the idea of a perfect family was challenged because we didn’t know better at that time. Suddenly to have a disabled child among us, it made us reflect on a lot of things and we’d read books about autism and that kind of documented why we should not expect too much and why our son should not expect too much. But even though we as parents took some tumbles then nothing changed for our son. He was the same wonderful child the day before and the day after the diagnosis.

So when we realised that, we skipped the trap of pity that many fall into at that time and we thought, well the most important thing is how can we support his development and how can we do what we can to make sure that he’s included like everyone else like his older siblings, like everyone else. So we came to a conclusion, instead of trying to train our son to behave like a non-autistic child so he could get a job, one day rather see if we could change the labour market so be more understanding and accommodating and creating zones for everyone where they can excel instead of having a few standards to you had to fit into.

In my career as an IT professional, I knew how difficult it is to find people who will hide pride in what they do, high accuracy, attention to detail, critical thinking, honesty.. they’re hard to find. But I also learned that there are a lot of people out there with those characteristics who don’t get a chance just because they don’t live up to the social expectations in any occupation. So I decided to try to change that and I quit my job and started as a social entrepreneur with Specialisterne in 2004. Specialisterne by the way is Danish for Specialists who want to create a room in the labour market for those who are not just generalists and fit the expectations from recruiters.

DEBRA: When you started the organisation, did you partner up with employers? How did it kind of started?

THORKIL: It started in a way where my former employer, I went to the HR Director and said, “I love working here but I feel I have to do something else.” And I told him about my son. My experience from them when I was acted being in Autism Denmark, so many who don’t get a chance while there are so many unfilled jobs. And I feel I need to try to make a change here. And then, my former employer we agreed that I should discuss with managers in my former employer company to see if they could be the first client and so I had talked to my former colleagues and a lot of them said, “Makes sense. We need to have tasks sort and many of these tasks good be a good fit such as software testing, data-analysis, data entries.”

So when I signed my resignation, I also signed the first client contract. So that gave me room to work on the essentials; how do I organize. I never went to business school, I did not know how to start a company but I feel I had to. So I tried to figure out how do I figure out what autistic people are good at? My competitors, they’ll hire the ones with the best resumes, CVs, job experience, education. I claim that there’s a lot of raw material among autistic people that can be utilized but what is it, how do I find it and how do I create environments where autistic people can excel, what they’re good at instead of trying to predict how to interact correctly the next situation.

So I went to Lego because I found out when meeting with other parents that one of few areas where many autistic people excel is when they play with Lego, so there’s some kind of systematic that could be a window to view on what are autistic people good at, motivated for. Communication is one of the challenges and when they’re not good at selling themselves and writing above themselves, how do I find out so that it would end. I thought if I can make them show me instead of telling me about themselves, that’s one way to grow.

And I went to Lego and came back with a Lego mindstorms robots that turned out to be a wonderful tool for creating playful environments where autistic people thought they were playing but actually they were showing us a lot about motivation, vulnerability, individual skills, shared skills and professional skills. So that worked out well.

I started up in a small city. I didn’t have any startup capital, I had to ask my wife if it was okay to mortgage the house. She said yes and we’re still married but I had no money when we started, only the contract with the employer and upfront payments. So whatever chances came we have to sold it because it was not a parking ticket it was a family’s economy that was at stake almost from day 1.

So I went to employers and with the case from my former employer that’s now called TDC in Denmark. I went and got my second employer and third employer and then BBC Worldnews came along and suddenly it was a story globally. And there I receives requests from all over the world from more than a hundred countries who were saying, “For our kids’ independent future, please come and do something in our country.” And when families contact me I cannot say no because I’m also a parent. I do understand their frustration and their hope. I guess I can say, “Be patient.”

And then I founded Specialisterne and the foundation in 2008. The goal to generate 1 million jobs for autistic people and people with similar challenges around the world. So this is now the platform where I’m the chairman of the foundation. I’m associated with the world economic forum as what the foundation social entrepreneur and Ashoka fellow global network of social entrepreneurs and Specialisterne Foundation is associated with United Nations. So we have some big stages to work from and then we started Specialisterne in other countries. We now have operations in 12 countries. We worked with big employers around the world and we’d been copied by so many. We love to be copied. So probably my estimate is that probably 10,000 autistic people have gotten a job because of what we started back in 2004.

DEBRA: Let me go back to the bit about the robot, so what you got was the guys I’m assuming playing with the robots and from that you work out what their skills were, what did you then do in terms of going to the organisation and saying, “We have a person with these skills, these skills, and these skills.” How did that work? Because obviously you’ve identified in the young people what they can do, how do you then translate that to the employer and say, “This would work with this job.”?

THORKIL: Well we basically have two models: one is that we assess and hire the autistic people ourselves. And then we go out and offer consultancy services to clients. And in that situation, then we would know very well what the autistic people is good at and then we’ll go and sell that as a service. And then we can target clients that has a need in the area where the autistic people excel. So that’s kind of straightforward. We are the managers, we are responsible that everything works. So that’s one way. It’s a kind of a low-risk way because we’re in control of it all. But 90% of the autistic employees work at the client’s site so that’s a lot of engagement but it’s our employees. But it’s hard to scale and it’s very cost-heavy. The most scalable solutions is to help pick companies recruit autistic people. And in that case, if it could be Microsoft, SAP, EY, PWC, there’s many examples out there who have said, “Well, the autism in my brand it’s sounds interesting to us so we have some jobs here, maybe inside the security or in data design or data mining or something, could this be a good fit with autistic people? Then we go and visit the company, we meet the leadership, the management, the grass roots in the company because in all companies, there are family members who have a big patient for autistic people or people with similar challenges. And we like to contribute as buddies or mentors or somehow else take part in this.

Then we go through the job descriptions and kind of feel–“Do you really have to have many balls in the area to be flexible, to be good at selling yourself for a role in data mining?” And often they say, “No, actually not.” But this is kind of a standard job description. So we take some parts out typically that is not really relevant. And then we get an impression from the employer is this an employer who is willing to adapt the management style in order to support autistic people in the workplace. We don’t want to work with any employer. We expect 4 values; one respect that autistic person can add value to a diverse team and that yes this person has a formal disorder but you should expect the same as you would from anyone else because you should work with us because of talent acquisition and not because of CSR.

The second is accommodation. We had to create workplaces where autistic people excel so if it’s an open office environment, it should be okay to have noise-canceling headsets and small dividers if that’s what is needed for the person to feel comfortable in the work zone. And of course, there are flickering lights, we’ll have to deal with that but there’s always a solution to organise that.

The third value is clarity or transparency. It has to be understandable what is expected from you. So, say what you mean, mean what you say. Set expectations clearly. In return, you will get a very honest feedback and you will learn to appreciate that. And the fourth is accessibility. So if there’s need for guidance, if the person is getting stuck, the person should always know where to go.

So with respect, accommodation, clarity, and accessibility– this is really good management and what the examples from employers is that it creates a better workplace for everyone in that department. So, we claim that a workplace where autistic people thrive will be a better place to work for everyone. So, we have a 4 week standard assessment and on-boarding program where it all takes place at the employer because many autistic people have never been in a workplace before. Some have but that had been a bad experience. So we need time to kind of create the individual’s comfort zone in the workplace.

We train Lego Mindstorms, we get settled in the workplace in week one. Week two, we grow from an individual to a team comfort zone. We introduce Lego Mindstorms robots in a scrum setting. Scrum is an agile development framework where you learn how to work with others, how to optimise your own contribution compared with what is the capability of your team members and you learn how to deal with rapid decisions that takes place in most workplaces. So we have a scrum week where we give the challenge. They have to solve with Lego mindstorms robots in a team setting framed by the scrum methodology. So that’s actually it. Very often, I make it a moment when someone realise that they can actually work in teams and contribute to teams. They may have been told otherwise until then. But when you create these environments where people thrive and think they’re playing then a lot of things are possible.

And then the last two weeks we engage more in the assessment of professional skills, individual skills, motivation, work ability and we train the manager, buddies, mentors. So the workplace, it’s introduced to how to understand and work well with these new colleagues. And then we set up a support structure. So, the autistic people when hired, they have peers, a go-to person for understanding daily routines, a go-to person for kind of workplace questions and there will be HR person connected and then we’ll have connection to a professional outside the workplace. Someone who have more expertise in autism and can deal with (if there’s) anxiety issues or something else.

Beyond the 4 weeks we describe a personal business profile of the individual and we translate that to the employers. So we create these environments where autistic people feel welcome and we do not just depend on one person, it has to be real inclusion.

DEBRA: So you very much sound like it’s focused on IT, is that the only thing that Specialisterne does or do you have other industries that you operate in?

THORKIL: We operate in many industries but the IT was the starting point and it has been hooked on to our brand, so far. Also thanks to the first big clients like SAP and Microsoft and these IT giants but we work very much in other industries as well. We have a lot of experience in the financial sector in Australia. We’re also strong in pig farming which is one of my favourites because in the outbacks of Australia, it can be difficult to recruit people who want to do a career in pig farming, but there’s a lot of autistic people who love working with animals. They’re just not thought of pig farming as a career but it has been a fantastic match and the autistic people have all enjoyed of work that has had a positive impact on the whole of the organisation.

So, from cyber security to pig farming, you can just imagine where good memory, sometimes better recognition skills, high accuracy in repetitive tasks, but also new ideas to solve traditional challenges. And honesty, and dedication can be used all over. I claim that in any business area, you would be able to find at least 5% of tasks that would be very well suited to autistic people and no one have clip me wrong in that assessment.

DEBRA: You talked about having specialists and I think there has been a trend, hasn’t there in the workplace to go to sort of generalist being able to do different tasks in any job, do lots of different tasks and that’s obviously something that a lot of people with additional needs don’t find very easy to do. So the whole idea that you could specialise must be key part of it as well why it’s successful because people can focus on what they’re good at.

THORKIL: Yes, that is the way you build your comfort zone but my experience is that as you build your comfort zone, you will feel more comfortable also to try out other things. So it’s important for us that it’s not enough to get a job, you should also kind of grow your comfort zone and your self-confidence and your skills so that you can also try out other things because in this job of mine, things change. That’s the only thing we can say. And it’s not enough to be an expert in one area and then close the door and work on that, you have to be ready to kind of find your opportunities as things change over time.

DEBRA: You’re saying that people’s skills just develop anyway because their confidence develops. A lot of people don’t have great social skills as you mentioned but you would get those just by being in an actual, real-life workplace.

THORKIL: I think so. And the way we grow social skills is a two-way streak, really. So, we help the autistic person understand how the workplace works but we also teach the workplace how autistic people think and how they can contribute the most. So, it’s not a one-way saying, “We have to practice social skills for the individual.” We’d like to do that but we also… it’s just as important to focus on preparing the environment because autistic people, they have their specialties that should be an asset in a workplace that competes in a global knowledge-based market economy, where being the same will be more of a problem that being different.

So I think autistic people can add value to most teams in a knowledge-based market economy. No one have to be able to excel in everything. So if you’re really good at your expertise and you’re good at working in teams and finding out how can your knowledge benefit beyond the task itself or if you’re in an environment where others can help you will contribute the most, then that’s the best way to prepare for the development in the labour market.

DEBRA: Yeah, I think it’s interesting what you said before about jobs specifications always saying the same thing like must be able to work in teams, and good communication skills. And there’s many people don’t have those so it’s stop from getting into jobs that they would excel at, as you say, so it’s actually about making the job fit to the person rather than the person have to fit to the job.

THORKIL: Yes, but I also think, we used to assessing autistic people who are outside their comfort zone, and then we can see a lot of challenges. But how does it look like if you get autistic people in their comfort zone. So, being outside the comfort zone for example communication is a challenge because it can be hard to read what is not had been expressed so that scene has a problem today. But actually, it’s a problem for everyone. So, if you’re in a workplace where there’s a lot of ambiguity, then you never know what you’re getting in return. So, if workplaces get more used to setting expectations clearly, then they can, I think, improve their communication capacity in the whole department. So, an autistic person well included in a team could actually raised the whole department; communication capacity and if the workplace understand how to get the most out of this autistic person, not just the skill sets but also the kind of personality.

So I think workplaces can learn a lot from autistic people but we have to turn things on their head sometime and say, “Okay, so communication is not a problem for this individual or is it the canary in the mine shaft saying if that’s a problem for this person, is it also a problem for everyone else?” And often, it’s the latter and if we look at the eyes at the world through the lens of autistic people sometimes, then I think we can see a lot of room for improvements in workplaces that could reduce the stress-level and grow efficiency into one.

DEBRA: You talked a little bit about the future, so where does Specialisterne go now? What are the plans for the future? You said the foundation, so I’m assuming that the organisation that does the consultancy and gets the guys in there is just running itself in a sense? Or are you still actively involved in that?

THORKIL: I’m not actually involved. My last involvement was to start Specialisterne in the US. So, I lived for 5 years in the US but I’m back in Denmark now, and I’m working on models that can lead us to a one million job goal by 2030. We still have 990,000 to go. But the next focus area will be large populations in the developing countries and we have most of our experience from the Western world, but we also have some experience from Brazil and India and China. But now, we need to invest more in learning what we have learned over the first 15 years, 12 areas, and what is the experience working with partners and how can we support employers and followers who want to follow our example. And then how can we work on the supply side with governments and the school system because we want to remove the divide, not just build bridges. So how can we get back to the roots and say how can we help families realise that there are some other learnings in life you will get out of this. Some will hit you, some will give you a lot of joy.

We have to create environments, not just in the labour market where autistic people will be welcomed, but also in the education system. So I think, that is the long-term contribution from Specialisterne and the foundation, that we will try to help companies with more inclusive workplaces and help the education system and governments kind of looking at this area from another angle.

DEBRA: You mentioned before as well that people have copied you, a lot of people will do amazing things but then, they’ll do it by themselves rather than taking information from other groups. So I’ve got some examples of employers over here in the UK that started something and then they’ll go and talk to someone else who started something similar and they never talk to each other. I mean I’d imagine, that you’d rather that people sort of came and looked at what you’ve done rather than sort of trying do something themselves… because it’s 15 years in and you’re still as you say, learning.

THORKIL: Yeah, I think what we’re looking for is more capacity in our foundation to kind of see not just what has been done in the Specialisterne and the group but also, a lot has been learned from followers, so this is one of our ambitions; to see if we can grow the market together instead of working as individuals. So, this is also I think one of the major areas to focus on. And another way is to see how can we use technology to help identify personalities and skill sets, and how can we also use technology to match the tasks with the talent. Not just jobs with job seekers because jobs are often a bundle that includes a lot of things that autistic people may not be so good at, but if we can identify tasks at a more differentiated level, then a lot of autistic people will feel they can contribute more.

Lots to bid on but I think the biggest effort will be to change the mindset globally that this is a different journey and there’s a lot of untapped talent that societies, employers should not miss out on. It’s too costly not to benefit from this talent anyway.

DEBRA: Thorkil, thank you so much for your time.

THORKIL: You’re welcome. Thank you.
Debra: Key takeaway? Employers need to be embracing new ways of assessing the skills of potential employees. By not doing this, I am missing out on many talented people– some of them specialists, who would enhance their workplaces.

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