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Transcript - Innovation and Proactivity in Service Design with Karen, CEO of SNAP (Episode 2)

Updated: Mar 17

Libby: You are listening to Constellations, the podcast connecting charities, communities and causes in the Essex unitaries of Thurrock & Southend. In today’s episode we are talking to Karen, CEO of SNAP, who support families with children and young people who have a special need or disability. We found out how SNAP adapted their services in the pandemic, and have been celebrated for their innovative ways of working. We really enjoyed finding out all about SNAP and we hope you do too!

Sharen: Today we are really excited as we have headed out to SNAP Special Needs and Parents based in Brentwood. And we are joined by the CEO Karen. Welcome Karen and thank you for having us.

Karen: Hi. Thank you for having me

Sharen: Could you tell us about SNAP charity and the services you offer to families?

Karen: Yeah, of course. Snap Charity was set up back in 1994 by a group of parents who realised there was no support out there for them, their family and the needs of their Children. Basically way back then, they set up a little preschool group, and since then SNAP has grown hugely and developed.

We now have our lovely centre here which I have just shown you ladies around and since coming into the centre in 2007 our services have really increased. So we support families whose children are 0-25 years old with any special need and/or disability and parents do not have to have a diagnosis to contact SNAP. Once they come to us we tend to do a helpline call initially discussing their situation, what they're going through and the services SNAP can offer.

We run pre-school groups, we do after school clubs, we do holidays clubs, education surgeries, benefit surgeries, counselling advice, parent talks, you name it. The list sort of goes on and on. And depending on where the parent lives impacts on how and what services they may access or what support they may need. And obviously we can do a lot of that remotely if needed, they don't have to come to the centre. That's probably a very whistle stop tour of SNAP.

Libby/Sharen: That's great. So what areas do you cover?

Karen: We cover the whole of Essex, also Thurrock, Southend and a bit of Havering as well. Due to some of the funding restrictions it can vary as to what things we can offer some families. We are funded quite a lot by Essex Short Break service so for our after school clubs and our holiday services, it tends to be families that live close by in the Essex area that would access those. But for the rest of the support, all parents in Essex can access support from us. It's quite a big area though.

Libby: Yes it’s a very big area, I hadn’t realised.

Karen: It is and currently we've got (I think) we're up to around 3,000 active families on our database.

Sharen: That’s amazing. I can imagine you’ve supported a lot more as well.

Karen: Yes, we have. I think when they did the last total up it was well over 6,000 families that we’ve supported since we started. When you actually sit and talk about it, you realise just how big it is. When you're doing the doing every day, you don't really think about it.

Sharen: I was going to ask you why you think the services are needed and it's evident why from the number of people you have supported.

Karen: It is, yes. And I think we do listen very carefully to what we're hearing from parents and what they're saying they need. We try to make sure our services are reflective of that. A few years back we realised that education advice was needed, and a lot of that we are able to do through our helpline but we now also do education surgeries within the Centre for parents. So if you hear a particular theme that keeps coming up, we will offer a parent talk about it.

Libby/Sharen: So how did it come about? And how did you get involved in SNAP?

Karen: Well it came about way back in 1994 when the parents decided they needed to do something and wondered what they could do? Talking to Hillary, who was the founder of SNAP she said there was just no support at the time. She found that she needed to connect to other parents and it just grew and grew from that. She would be on the phone at dinner time because the parents phoned up, desperate for support when she was at home.

I came to snap back in 2016. I'd been in working in education, working with children who had statements at the time. Children with physical disabilities, visual impairments and/or autism. To be perfectly honest, I was quite frustrated by the restrictions within what we could do to make it work for the children we were working with. I'd done it for eight years, and I just wanted to go somewhere where there was a bit more freedom to do what we wanted to do in the way we wanted to do it. So, yes, I've been with the charity quite a few years now and seen it grow and develop. Moving into this building and seeing the team expand from 4 people to 20 of us now. So yes, there have been some big changes.

Libby: I don't think I've heard statements before. Is that what EHCPs used to be called?

Karen: Yes, it shows how old I am. Yes back when I worked in schools, they were statements and then they changed the education healthcare plan back in 2014.

Libby: What's your favourite part of your job?

Karen: For me, it's the hands on work still with families. I also sit in on a clinic with the local paediatrician, when families are first going through the assessment process for autism. And for me, I find that an honour and a privilege to be able to do that. And that's probably the thing that gives me the biggest buzz.

Libby: I think that the support from my point of view as a parent must be invaluable.

Karen: I think we hear that all the time that you're in there with the health professionals, and they give as much information as they can give at that moment in time. And then quite often you're discharged because they've done their job, and I think it's just knowing that there's someone else out there that can help you and help you guide through the maze. Where am I going? What do I need to do? Who do I need to contact? And we hear that a lot that actually having that person there that says It's OK, I can call you tomorrow we can talk about this. It's really reassuring.

It's all of it, I’m really very proud of it all. And the team are fantastic.

Sharen: And actually, without that diagnosis, families can still access your services can’t they?

Karen: Yes, yeah, it really doesn't matter what you're going through with your child or young person. If you have concerns in any way then we're here to help. I think that's something that some parents don't realise about us. They see us as the SEN group and think that's for families who have children with very complex needs and not for them. But actually we're here for all families and if you're worried about something. pick up the phone and we can help you work it out. And if it's not something we necessarily do, we probably will know who else does it and who to link you to.

Sometimes we never actually meet the child. It's just the parent that needs support, maybe help with understanding the system and the child is fine in mainstream activities so they don't necessarily access the Centre.

Sharen: That must make it much easier for a lot of families. You can wait a long time for referrals and that can take the pressure away. So do you rely heavily on volunteers?

Karen: We do, very much so. When we were showing you around earlier today, we had a lot of volunteers in helping us today with that session, they're here making teas and coffees, chatting to parents, looking after the children so the parents can sit and have a cup of tea - maybe for the first time that day. We also have volunteers that come in and help from an admin perspective. We have a lot of volunteers that help on the fundraising side of things. We rely on people, we’re not a huge team and some of the team are part time and when you've been in here working all week and then have to give up your weekends as well, we actually couldn't do it without our volunteers.

Libby: So many charities just couldn't do what they do without volunteers, could they?

Karen: No they couldn’t. We also have a lot of teenage volunteers, which I think is really wonderful. They come in to support holiday sessions and after school clubs, and they are brilliant because they're there interacting with the children. Parents can sit back and have a bit of a break, and I think it's really good for them and they're understanding of the world and they are giving something back.


Karen: We make sure we support the whole family. I think it's really important that siblings feel part of it and are able to access services here. They come in and see that they're not alone and that there are lots of siblings out there going through similar things. We run a siblings event in the summer for four days where we completely spoil the siblings. We have them here from 10-4pm. We do some fantastic activities because it's really important for them to feel they’re special and to acknowledge that they need time out. I remember a little girl coming in here years ago for an event, she walked in and she just stood at the door and she said, “What? These Children here all have brothers and sisters like mine?”. We said, “Yeah, they do”. She went on to say she’d never, ever met anyone else in her situation and at school nobody understood her. She was only about seven. She was so little yet so aware and she just loved being in that group with other children that completely got it.

Libby/Sharen: That's so wonderful to be able to give that support to kids, it’s so powerful.

Karen: We also have lots of grandparents coming as well, which is lovely. In the past we have offered grandparent coffee mornings. This was pre covid and the grandparents came on their own. They didn't come with their families, and they said they found it really helpful to be able to ask questions openly and honestly.

Libby/Sharen: I can see how helpful that would be.

Karen: They had a group discussion about how, as a generation, how they view things sometimes isn't helpful. It was helpful for us as professionals to have to break down some of those barriers, and it's not been the family trying to do it themselves. They don't do it on purpose and sometimes it comes across in the wrong way, and they'll say things or it’s behaviour, or it's this or it's that. And we can discuss it with them and now that we know a lot more we can give them some really good, helpful advice. I think also we acknowledge the fact that as a grandparent, it's a double edge really, because you're watching your child go through this and also your grandchild. They really related to that and agreed they’d never thought about that, that they were supporting both, which is quite a lot of pressure.

Libby/Sharen: So how did you adopt your services during Covid?

Karen: Gosh, back in March 2020 when we could see what was coming, we were very quick to talk to our IT company and our phone company to say we think we're going to have to close the centre. We thought about what we could do to continue our services and our trustees were very much part of that as well. We managed to get everybody up and running.

So the day after lockdown, we were all at home in our houses with our computers with access to the network. I'm so proud of that. We all had the helpline on our mobile phones, so as soon as someone rang the SNAP number, we could pick it up. So we carried on with our helpline phone and email support.

Within a week we then got all our counsellors working using Zoom from home and on facetime and the phone. I don't think we had a break in that service. Then we were very quickly looking at what else we could do.

Within weeks, we had our drama class on Zoom and then our Yoga Club. We were working on Webinars for parent talks, so we transferred them over to Webinars on Zoom. Zoom, Goodness. I had never heard of Zoom until March 2020.

Sharen: Now it’s your best friend.

We adapted so many of our services at the point and I think there weren't many groups that we weren't doing anything for. I think preschool ones were probably the hardest. We did quite a few preschool musical videos and we sent things out to families, and a lot of the family team were making calls to families to check they were okay? To ask them what they needed from us. The preschool children were probably the hardest to give support to because they don't always want to engage on screen. Or if they do, they know what they like. They want to watch what they have chosen themselves, they don't particularly want to watch the SNAP team.

Libby/Sharen: What things that you did during the pandemic have you kept?

Karen: We are still doing quite a bit of zoom, which I don't like anymore. Our parent Webinars are still offered on Zoom and we do recordings of all our parent talks which we've never done before. So if a parent can't be there at that moment in time they can just have a link to the recording and watch it in their own time at home when it works for them. Which we know for lots of parents as it's not easy to be here at a certain time.

Libby: Yes, and you might think that you're gonna be able to make it, and then something changes. Yes, last minute.

Karen: Whereas now it doesn't matter if you sign up for it and you don't get here, you'll get an email a week later that says, here is the link. With a list of all the resources that we talked about. You can watch it when you want to watch it.

One of our holiday sessions ‘Sensorised’ which is for children with very profound and complex needs. We went on to zoom with that one because we worked with our music therapist Emily, who also does the Facebook live. On a Friday morning during the Sensorised session, she would do singing and sensory stories.

We would send a little list to the parents in advance to say what they would need on the day. For example telling them we would be doing a sensory story about Henry's hair shop so you need your hair dryer and your shampoo. Then the Children would zoom in with their parents and Emily would be on the screen with the SNAP team. Sometimes Dale would join and do some signing, and then the Children and their families would be interacting with Emily doing a sensory story together.

Libby/Sharen: That's so lovely.

Karen: It was magical. And the first time we did it, it was just amazing because we had families zooming in where their children were in hospital. So these children could actually join in and it was something we had never really thought of before. We would do sessions here, and if you could come along, you could come along. B

With that group of children in particular, a lot of them are often in hospital and the feedback from the parents was that it was just amazing. Their child was in hospital, but we were still with them. They could see all their friends on the screen and could interact with them. Some of them would even take their resources with them. We had one little girl who turned up at the hospital appointment with her Henry's hair bag. The doctor was on the screen in the end saying how amazing it was. Telling us she was singing along to the songs and how she had got her shampoo out and was smelling the shampoo.

Now that we're running it back in the centre, we do still have the Zoom option because some of those Children are still poorly and will continue to be in and out of hospital. So we have a big screen downstairs and we have the session going on with Emily here, with the families that are able to come here and the children who are not able to get here because they're too poorly are on the screen. Still able to interact with us and join in. So that has been really fantastic and has changed the way we do that service, and that's been really good.

Libby/Sharen: You mentioned a Facebook live that you do. Could you tell us about that?

Karen: Yes we still do that now on a weekly basis. We started that in April 2020. It came about from a conversation with a parent who was saying how much they would miss the interaction with us. We thought about what we could do and I had a conversation with Emily, the music therapist, and we decided to go on to Facebook live on a Friday morning. We though Emily could sing some songs and myself and Dale could talk about SNAP. That was the start of it, and we still do it on a Friday morning. It has been crazy some weeks and a bit silly other weeks, but we're still getting views. We usually have about 20 people with us live at the time, and we're getting views of 400 still on those videos because you can go and watch them whenever you want to. You don't have to be there live with us.

Back in March this year and near enough a year after we started it, we actually did a 24 hour kitchen disco. It started on the Friday morning at 9.30am and we went right the way through until Saturday.

Libby: How did you find that?

Karen: I'm glad I did it, but I don't think I'd ever do it again. It was okay for me, I was just chatting but Emily was singing a lot but it ended up being an amazing fundraiser for us. We actually raised £13,000 and in the final hour we had 100 people on live with us watching. We won an award for it as well. The Brentwood Chamber of Commerce do Business Awards, and we won the Best Innovations for the Facebook live. So that was a nice recognition for what we did.

Sharen: Fantastic. So were you nominated?

Karen: Yes. They came to us and said we have been put forward for this award. We were up against other other organisations, so we had to be interviewed for it and it went really, really well. We didn't know until the night whether it was us who had won. So that was really exciting. Also on the night they did an overall Business of the Year award and right at the end of the evening they were describing the winner. We started to look around our table thinking this sounds a bit like us. Then they announced us as the winner. For our charity it was amazing, and very, very well received.


Karen: We are here. We are a charity supporting families. So please, if you're worried about anything, just pick up the phone. The helpline number is 01277 211300 and it's manned Monday to Friday, usually from 9-5 Monday to Thursday, 9-4 on a Friday. (We do try to sneak out early on a Friday). Or email info@snapcharity.org.

Libby/Sharen: So if someone is sitting at home thinking that they might benefit from your services, but they're not sure. You would say just get in touch and you’ll support them.

Karen: Definitely. We want to help as many families as we can. We've also got a fantastic website www.snapcharity.org. It has got some fantastic resources on there and so much information. There's a directory of resources for people to access.

Libby/Sharen: Where are you on social media? Where can people find you?

Karen: Right. Okay, we're on Facebook, Instagram, LinkedIn and Twitter.

Libby/Sharen: Thank you so much for talking to us today. It's been a pleasure to hear about all of the amazing things that you're doing.

Karen: Thank you for having me. It's been really lovely talking to you.

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