Like Minded People Who Think Differently

Podcast Episode 63  Finding a supportive safe space for our children to have a variety of social experiences is so important. In this episode, we hear about CASPA which is providing that space and doing a whole lot more. Helen Dyer from CASPA explains not only how CASPA came about and what it does in terms of providing social experiences for a range of age groups. Importantly as CASPA has grown and the young people who started with them have gotten older CASPA has realized the needs of its young people are changing. So CASPA is expanding what it does now focusing on not providing a space to build social skills but also developing programs which help their young people develop those key skills which are transferable into the workplace.

CASPA provides a vital link for young people to begin the journey into work and greater independence. What the world needs is more organizations like this so that an independent future can become a reality for more young people with additional needs.

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Podcast Transcript
DEBRA: Welcome to Episode 63 of the Journey Skills podcast. I don’t know if you’re like me but when I think about my daughter’s future, it’s all a bit of a puzzle. And I don’t mean puzzle in a sense of what she needs, I’m pretty clear on that — a job, a place to live and a friendship community. When I say puzzle, I mean as in piecing something together. All of the people I speak to are of course doing amazing things but I think the real value of hearing from such a diverse number of people, at least for me, has been it provides the pieces for this puzzle of what next, how do I help her move towards independence. And of course, there are some weeks when the pieces won’t fit because we’re not about to move to New York or even to another part of the UK, but I hope that for someone listening that one week there is that piece that they were looking for, whether it be an employment opportunity or housing solution.

So why am I talking about the puzzle? Because the organization that is the focus of this week’s podcast, CASPA which is based just outside London, is I think an important puzzle piece. If you listen to the last episode which was all about work, you will remember that behind Spectrum Designs who provided the employment opportunities was another organization called the Nicholas Center. And they provided the ongoing support that the young people needed to ensure that they could find and keep paid employment. That is in essence what CASPA is doing although as you will hear from Helen Dyer, the director of CASPA, they do an awful lot more than just that. And again, you’ve heard me say this before but I am in awe of people like Helen who have such passion for changing things, changing perceptions, and changing the world to make it a better place.

So CASPA is one of those puzzle pieces and yes, I know there are lots of different pieces and sometimes we all have no idea which piece goes where. And I suppose what we’re really looking to do is complete our own small puzzles which if you think about it don’t need that many pieces to make a complete picture.

There’s a lot going on at CASPA and Helen and I only had time to touch on the portion of what they do and the impact they have. But I think you will get a feel for what CASPA is and why it can be such an important part of completing the puzzle for someone. In some ways, they have grown with their young people which is why I think they will be so good at helping them move towards independence.

Anyway, I hope you’ll find your puzzle pieces and maybe hearing about CASPA will get you a step closer to slotting another piece in.

DEBRA: Today I am talking to Helen Dyer who is a Director at CASPA which is based in the London Borough of Bromley. Welcome, Helen.

HELEN: Thank you.

DEBRA: Can you tell me a little bit about yourself first of all and also about CASPA?

HELEN: I started at CASPA as a drama tutor about 16 years ago so my background is in theatre and I knew very quickly once I’d finished my drama degree that I didn’t want to be an actor or director, I actually wanted to use it for social good. So, I became assistant director of Sutton Theatres and set-up a community education department working with young offenders, teenage parents, people with disabilities. So, using drama for good so to create social change basically.

My mum was working with a woman who had recently set up this little group because her son was what we would then have and still often refer to as high-functioning autism. Now, I hate that term and at CASPA we try not to use it. We always kind of do what I’m about to do now and break that down just because somebody can communicate the way that we want them to, it doesn’t necessarily mean that they are high-functioning and just because somebody can’t communicate how we want them to, doesn’t mean that their heart, soul and mind is not high functioning. So that whole term is quite difficult but professionals use it, parents kind of understand what it means so that means that a child or young person’s academic capability could be average or even above average but that they have a disability or the way that their brain works means that there are social challenges or challenges around social understanding.

This lady had set up this group for her son and a few others and when she found out what I did, they invited me along to do some drama workshops. I went into this room, there were about 7 young people between the ages of 12 and 16, all looking very like shy and scared and I kind of sat them down. The parents were all upstairs at the time, (they use to go and have a cup of tea and their children were just kind of try to socialize downstairs) and I started playing drama games with them.

There was some reticence from some of the very, very, clever young people like “You’re a drama therapist, what are you doing? Why are you making us look at each other? You know we don’t like looking at each other”.

Anyway, so I’ve never met anyone that I knew had autism. I must’ve done along the way but just wasn’t on my radar. I was like 23 or whatever, didn’t even kind of realize just what the specific needs of that group were. I started working with them and they wrote a script. We put on a full-scale production, at a local youth center. I pulled in a few people from my theatre background and we had lights, sound, the whole shebang and it was about ninjas and hidden rakes and zombies. It was just absolutely fantastic! The humor was brilliant, the writing was amazing, the acting (once we’d got to that point with loads of work) was beautiful.

During that time may be about 6 months that we’d been working on it, more families had found out about this little group called CASPA and had joined. And the parents, who had formed this group CASPA which stands for Children on the Autism Spectrum Parents’ Association, they had applied for it to be a charity, so they had formulated it into a charity and they asked me to come on board as a project manager. So, for the last 16 years, myself and those parents and then all the other amazing people that we’ve brought on board since have developed CASPA into a full-blown nationally recognized charity. And we’re now working with 270 children and young people per week and way more than that over the course of the year.

What’s interesting about that I think as well is that I was not an autism professional and the people that we’ve brought on board since have got varying degrees of expertise in autism, social communication difficulties but that’s in some ways has been a massive strength of ours because we have very high expectations of the young people. We never assume to know what a young person will need. Every single young person, child that walks through that door, we might read the diagnosis, we might read what the parents have said on a piece of paper, we might read about the child but then we put that aside and we just look at the child; What does that child need? What are they bringing to us? Why are they here and what can we do to make their life nicer?

So, that little group then were like I said between the ages of 12 and 16 and most of them are still with us 16 years later and now they’re heading to their 30s some of them which is a real testament I think to what CASPA really does. So, what I would often refer to is that CASPA is a long-term intervention. It is a place where those young people who feel othered and who feel isolated and that they are different in the normal world, they feel that they are worthy of being here. They feel that they have something to celebrate. They feel that they can access all those activities that other children, young people just take for granted.

DEBRA: What kind of programs do you actually have?

HELEN: At the time that was like a juniors/inters group and we just carried on with that as they all got a bit older until it got to about 60 young people and they were like Okay, we might need to expand downwards, so expand the age groups downwards and upwards. So, we now run a tot’s group which is the under-fives. Then there’s juniors now which is 4-8-year olds. Inters which are the 9-13 year old’s and then our seniors 14-18 year old group (seniors) and then we’ve started a collaboration with Bromley College who asked us to come and start a 16+ group there which is brilliant because it’s working with their independent lifestyle group and their pre-employment courses so we’re sort of serving them as well as our own CASPA members. So, there’s a 16+ group.

As the young people are getting older and they’re showing interest in perhaps giving back and helping the younger ones, we feed them back in as volunteers for some of the younger groups and develop their skills in that way. So, there’s like a volunteering program and then we have a number of young people who now work for us as paid workers which is phenomenal. We have one young person who is now trustee and we appointed our first patron who is an ex-CASPA member two years ago. So, what we’re trying to do is feed those young people back in.

So, we also run Saturday clubs once a month for all age groups. For the older ones, it tends to be a trip because it develops their independence. We also run training and awareness sessions for schools or companies, whoever we feel we can connect with that and who might be interested in what we do or we feel need it. There are a lot of schools, we feel that we can make quite an impact with that.

So what we’re trying to do is through our actual programs working with our children, building their self-worth, building their ability to cope in the world (which I hate that word because they shouldn’t have to cope, they should be thriving, not coping), enabling them to feel happier and that they are valid. And also, simultaneously raising awareness so that ultimately, schools, educators, families, wider families and then ultimately employers will understand how to meet the needs of those young people. So, kind of trying to meet both of those goals, really.

DEBRA: Sounds like you started off as a family, a group of parents, so a parent-led organization. How did you manage to scale up so well and so professionally?

HELEN: It’s incredible actually and I’m so proud of CASPA for this because like I always say, it has grown from an organic need; parents are the ones with the passion, right? Because they see, through the desperation and the pain a, the little sparks of hope that their child will be able to achieve. I think it’s to do with real collaborative working and real passion. So, when you got a group of parents like that, they really want to see this happen right so amazing that they just had this idea and started something. But then, of course, what they did right without bigging myself up and some of the other staff, they brought in the right people.

And it’s just been a case of finding other people like myself who have that passion and we always joke because once you’re in CASPA, you never leave. Whether you’re a staff member or a kid or anybody because it is like a family but we have to (and it’s been challenging) really professionalize like you say. Because as soon as you’re working with young people, as soon as you’re working with vulnerable young people, you’ve got to get all your systems in place. You’ve got to get all the safeguarding stuff in place, you got to get your policies in place.

I think it’s to do with the very strong ethos at the top. And I always feel that when schools or organizations aren’t doing it right, it’s usually that the person at the top or the people at the top don’t really get it. So, the people on the ground might get it but the people at the top don’t understand what it takes and what is needed. Two of those parents, original parents are still trustees. One is our new chair and we always have had quite a lot of parents over the years on the board of trustees. So, they’re still very much involved at that level and actually, every other level. Not necessarily as staff but as volunteers, as fundraisers, as supporters. Parents are really key to this process.

And it’s always makes me angry actually when I speak to local authority’s youth services who say things like “Oh, we don’t work with the parents, we work with the children.” But how can you separate that? I mean, I know it’s hard but these children are with their parents more than they are with us. We need to work with parents to support them.

DEBRA: Just very briefly touch on the funding, so you’re a charity, is there someone dedicated to fundraising?

HELEN: Over the years, it has been me obviously who’s been kind of the key person to write funding bids. From the very beginning, I think this a really wise decision for anyone, parents or other people that are thinking of starting an initiative like this, a group, a social club, a charity, the parents paid to have their children there. So, just because your child has an additional need doesn’t mean that you don’t have money to pay for your child’s activities.

Many parents are able to pay and they’re happy to pay and they want to contribute. But we’ve never ever excluded a person because they can’t pay. So, I think the parents made a very good decision at the beginning. So that started off that income stream. So that’s the stream that’s like the bread and butter of CASPA – parents’ subscriptions.

Now if a parent can’t afford it, we work with the local authority and they might fund part of it or via short breaks or via direct payments, all that kind of stuff to fund it. So, we do get some funding from there but that’s all the subscriptions’ side of things. But that is less than a quarter of our income. So obviously, we need to raise a lot more money than that.

We have a very, very active community fundraising program. And by community, I mean like events; mountain climbing, walking on hot coals, jumping out of planes. In a time when money is quite hard to come by for charities, the very fact is we are changing children’s lives, we are changing their parents’ lives, their grandparents see the difference, their friends see the difference. We have a huge groundswell of support for the work that we do. So, you got a lot of people in the local community who are supporting us because they see the difference. I mean about one-third of our funding probably over the course of the year is community fundraising which is quite big for a small charity.

And then finally is the hard-arduous task of filling out application forms to trusts and foundations for grants. And that is my responsibility, and we do have a lovely mother, of one of our children, who has a skills and ability to write bid so we brought her on board in the last year and a half to do that which has resulted to some really lovely stuff like we’ve just had Children in Need funding for the first time. We’ve previously applied but now we’ve had a £30,000 grant from them for the next 3 years. So, it’s a kind of a patchwork approach to fundraising. It’s an ongoing thing that you just have to tuck inside and just do a bit of it every single day.

DEBRA: So how did people find you and is there a process of application/selection?

HELEN: So, there is a more formal referral process if someone’s referring from a school or the local authority. Of course, they will always contact us and we’ll just go through a kind of a more formal process but it always starts properly with a conversation with the parents about what their children’s needs are, what their family’s needs are. And then we talk to them about what CASPA is and work out if it’s going to be suitable. I mean we’d never say that “CASPA is not suitable for your child”. We might say, “You decide”. So, we invite the parents down, let them have a look, and then we go from there really. It’s just a process of visiting, seeing how the child likes it.

I mean, we’ve had to obviously be quite creative at getting some of the children in or some of the young people who refuse to get out of the car or whatever it might be. So, we got some magical staff who are good with that stuff. And we try anything we can to get them in because I guarantee once they’re in the door, even if they only stand at the door. If they start standing at the door and they only stand there for 4 weeks and they move in a little bit and one of the other young people comes to talk to them and they move in a little bit more. It doesn’t matter how long it takes. I have an absolute, conviction that they will eventually come in and absolutely love it and feel safe there and feel okay there. Because as one of our young people, our senior young people, Jenny always says when she does presentations for us now “CASPA is a group of like-minded people who think differently”. And I love that because I think she’s absolutely right. It’s just warm and lovely. So, they would come in that way, really.

DEBRA: So, you started working with the local college, what’s the other future plans for CASPA?

HELEN: For CASPA, of course it’s an evolution, isn’t it? So, what we’ve got now is a group of young adults and we have over 50 young people who are over 18. So, where we previously went out and said we work with children, actually, we’re working with adults. We’re working with a lot of adults every single week and that is the weight that’s pressing on us now, I think. I’m very concerned that we don’t just let them drop off of what we’re doing when they drop out of everything else. So when they drop out of education or when they fall off the edge of services and all that care isn’t there anymore and ultimately, there’s this big push in government around loneliness, our young people are the future lonely adults.

We can see this because we have parents ring us who have 21 year old’s and they’re desperate because their child’s not coming out of their room and some of them don’t even see the reason why they would. They’re okay with it. The idea of actually coming out and doing something with other people is too scary. “Why would I bother? I’m fine! Thanks! I’m fine online, my life online.”

But the parents don’t see it like that, of course, because they know human beings are really social animals and for that child, for that young person to have a full life, they would aspire for them to be in fruitful employment, in a relationship, or relationships; have friends, have a community around them that they can engage with. So, that really is one of our main projects moving forward is to really attend to that over 16 and over 18 group.

We are moving towards it in a number of ways. So, we constantly apply for funding to do independent living skills and pre-employment skills work. We have had some funding in the past to do that kind of work and it’s been really effective so we did workshops on CV writing, practicing still sing drama of course, practicing social skills, practicing interview skills, going out into the community, getting work placements or work experience placements for some of our young people.

I mean it’s a huge piece of work and you can never say, “Oh, we’re going to do it for 50 young people.” It’s not five, ten, it’s a really meticulous thing, isn’t it too kind of enable a young person who has so many challenges and barriers to accessing that kind of world into a space where they can and then to get employers and other people to understand that actually making what they would potentially call reasonable adjustments for somebody with a neurodiversity rather than with someone with a physical disability is a different thing.

We’ve been looking for opportunities for quite some years not only to run workshops and that kind of prep with our young people. On the senior program, Dan who’s our PM, program manager for seniors, he does a lot of work within the club which is very meticulous. It’s quite subtle to build that kind of independence skills. So, whether it be every week they have a conversation group so our counselor will start a conversation group in a small room whether it’s about relationships, alcohol, drugs, whatever it might be, something come up in the news, or it might be something like he started a tuck shop. So, when we used to go out for trips, we quite quickly realized that sometimes our young people didn’t have a clue about money and it could have been that they have never really thought about it. It could be that their parents were protective of them so always said we’ll pay in shops rather than thrusting them into that painful situation of doing it themselves.

We noticed that was one of the areas that obviously needed work – confidence out and about. So, we started a tuck shop and the young people get trained to serve behind the counter. Then we have done various different things whether it’s writing on a piece of paper or using text or using symbols or whatever it might be, depending on the need of the young person so they can ask somebody for something, and know what is good etiquette. You know, our young people tend to not necessarily have a social awareness of what to do and how close you stand to somebody. That stuff can be coached. That awareness can be developed in them.

And then on the other side, obviously them asking customers what they would like, doing the whole till stuff and working out what happens when two people come at once and they both say I was here first. All of that kind of challenging stuff that may happen in real life for them. We’re thinking about those things, everything we do we are helping them to develop. Every interaction our staff has with the young person, are they thinking about where this is going take this young person and they’re encouraging them positively, or they challenged them if they say something which is unacceptable.

You can’t get where you need to go if you just have generic youth services, kind of there’s a pool table go and play on it, doesn’t work for these kids, right? It’s got to be facilitated and then once they start to gain confidence, you can back off and start to leave them to it and the very pinnacle of that and what makes me literally fist pump on a Friday night, they may not be at the club anymore, some of them, but they’ll send us photos on Facebook of them all in the pub. And I just thought, “Yesssss!” They’ve actually rung each other or texted each other or whatever it is. This is what the whole point of all this is.

So, as an example of a project where we really focused on independence, we had a group of young people that we could take on to a volunteering project, it was with the Museum of London and they have different groups in and to do kind of like 12 weeks’ worth of volunteering in the archives. So, we accepted this and we took a group of young people who all said they want to do it and the very first time we were heading up to London, there was one young man and he just said, “I don’t know if I can do it. I don’t know if I can go. There will be people there I don’t know.” He just couldn’t do it that first day and he just got back in the car. It’s always a failure for us, you know, it’s like something so good and we know that he’ll be amazing at it.

So our young people, went every week and volunteered to catalogue and everything. It was just amazing, the work that they were doing there. They were interacting with museum workers. It was a really lovely project. So, the second week, the young man who didn’t come the first week agreed to come if I went and picked him up from his house and we went and we did that. So, he came up with us and over the weeks, some of the others who were l gaining a little bit more confidence started to ask if they could go on their own. By the end of it, all of them wanted to go together on their own or go in small groups.

So that’s 12 weeks, that’s all it took. The nice ending to that story is that at the London volunteer museum awards 2018, they won Best Team. Incredible. And so, for them, what a story, what a full circle to go especially for the young man who couldn’t get on that train the first day and for me, that’s what it’s all about. That is the start of how they can start to become much more independent and confident. Now, if we could carry that on throughout the year and more projects and then move that into working projects and add more young people, for me, that’s the future of CASPA. That’s where we are going to go with that.

DEBRA: Key takeaways? There’s obviously a lot here around aspiring for more for our young people but I think a key takeaway is if you’re thinking of starting something like CASPA, it’s okay to charge because if parents can pay, they will, and it will help you get something started a lot quicker.

CASPA Website
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