Hello, this is Anna Kennedy. We’re talking all things autism and we’re promoting mental health and wellbeing. I need to get my teeth in.

So yes, lots of things been going on since I last spoke to you and I’m proud to say that one of our Autism Hero Award winners, Bobby Trundley was on ITV News last week. He was so excited and he was talking about how he’s been living with autism and learned to focus on developing his strengths and determination, which is what has made it such a successful racing driver and one with a very bright future. Autism is Bobby’s superpower, he says, on the race track.

But off the track, he’s got lots of life struggles to deal with, which is what makes this young fella such more impressive and inspirational. So it’s still available to watch online. So if you check out on Google and type in hidden disabilities, what’s the truth? And you’ll see foreign correspondent Syma Moschin, her career had ended after an accident at work and it left her in agony from being a little girl.

Syma had always wanted to be a journalist heading around the world to cover major breaking news stories. And when a two ton jeep ran over her left foot while she was covering the Israeli-Palestinian Gaza conflict in 2014, it was assumed that she’d be back on the road sometime soon. But as Syma tells the Tonight Programme, her body was wracked with pain, and just imagine, and she had to face the prospect of giving up journalism altogether.

She’s now registered disabled, but after treatment at the NHS Pain Clinic, she’s back on the road talking to others who like her suffer from a hidden or an invisible disability. It also shared Christine McGinnis, the model who’s got three children on the autism spectrum, who talked to the programme about the difficulty she’s had trying to park her car when someone approached her and said when she had a disabled badge that she shouldn’t be parking there because her family were not, haven’t got a disability or not autistic. So talking about the Autism Hero Awards, we’ve only got a few weeks left before the nominations close.

So if you feel that you would like to nominate someone that goes the extra mile within the autism world, whether they’re a parent, it could be a carer, it could be a professional, there could be a reporter that writes particularly well, a business, somebody who you feel that goes the extra mile and our judges are going to have the difficult choice of choosing three finalists for the 12 categories. We have been inundated already with nominations and because last year we had to postpone our charity event at the Chelsea Harbour Hotel, all the nominations from last year have been transferred over to this year. So the judges, just to give you an idea who will be looking through all the nominations, this will be happening on Monday the 13th of September but all the nominations need to be in the week before.

So we’ve got David Grant, MBE, he’s a BAFTA award-winning broadcaster, a vocal coach singer and leadership coach. He’s also got children on the autism spectrum with his wife Harry Grant. We’ve got Russ Caine from Men’s Radio for 20 years, SUNY award winner Russ was the voice of Capital Radio’s Flying Eye, I remember that, where he formed an on-pair partnership with Chris Tarrant to create the most listened to commercial radio show in the world.

Russ has been saying since I’ve been doing my all things autism on women’s radio station, he has learned so much about autism. Kelly Croft, who’s a parent to a young person on the spectrum and also I’m ambassador to her Born Anxious clothing range. So if you want to check out Born Anxious it’s www.bornanxious.co.uk and she sells clothing because her son is very sensitive, cuts out the labels like my son Angelo did and it’s all label free and lots of useful messages.

Casey Ainsworth, one of the patrons of the charity, she’s an actress but also a wife and a mother to two people on the spectrum. Dr Pam Spurr, who’s been a longtime supporter, she’s a psychologist, award-winning radio presenter, also from women’s radio station, she is also one of the judges. We’ve got Detective Chief Inspector Dionne Brown, who’s also a parent to young people on the spectrum.

Two more judges, Johnny Jenkins, he’s the editor and political editor of Gateway and also works on BBC Radio 5 Live and the last one is Joe Luck, one of our charity ambassadors, who’s on the autism spectrum and who’s been a judge for a number of years and what she does while she’s there as well is sometimes when the judges are reading some of the nominations there might be some acronyms or some areas of autism that are spoken about where they might just need some clarification so Joe is on hand there to extend her knowledge. I’m so glad I don’t have to choose the final three because it is very very difficult and also just wanted to share with you that if you check out the charity website which is Anna Kennedy online we have Julian Weeter who is our well-being ambassador and she shares every single week tips on yoga, relaxation, the power of touch and to help you through anxieties, lots of information on the charity website just check out the resources page it is updated almost weekly now by one of my charity champions Marla again a parent of two young people on the spectrum. So today my guest is Michelle Sutton and Michelle joined Autism Together who we collaborated with when we did Autism Scott Talent and she started as 2003 as a support worker in the respite service with experience in working across both residential and supported living services.

Michelle was appointed head of residential service in 2019 she’s passionate about delivering quality and truly collaborative services Michelle is proud to have been involved in the development of a number of services from the concept to completion including new respite services and complex supported living. So welcome Michelle. Hello Anna.

Thank you so much for joining me so before we talk about autism before we talk about anything to do with you starting with Autism Together in 2003 share with our listeners who is Michelle. Tell me a little bit about your background where you’re from. Okay so I live on the Wirral which is just a stone’s throw away from Liverpool and the famous ferry cross the Mersey song where where the other side of the Mersey from Liverpool and lived here for my whole life haven’t really felt the need to to go anywhere else got everything I need right here on the Wirral.

Have you got any family? Yeah I’ve got a one-year-old he sent one a couple of weeks ago born during lockdown so that that was not without its challenges and so I’m a wife and a mum and been married for three years four years this year if I’ve got that wrong she’ll kill me. We’ve also got a dog a lurch out to see we think he’s about well we think he’s about now we’ve had him for eight years but he’s a rescue and he’s very much part of our little family unit as well. One year old you’ve got your hands full then.

Just a little bit just a little bit. And how about sleep? Are you getting enough sleep? I don’t think I ever got enough sleep and I certainly don’t get enough sleep now and I reckon I can certainly vouch for that. I hope you’re sharing responsibilities.

Definitely, in fact I get the better deals to be fair I am. I’m not great if my sleep is woken whereas Anna’s pretty good she can get up and and go back off so it’s it’s all good all good. Okay so tell me a little bit about your career in social care.

So why did you get involved in social care and is this always been your passion or what did you do before? I didn’t I haven’t really done anything else if I’m perfectly honest. I started in health and social care when I was about 14 I was doing a qualification at school and health and community services I think it was called and they were volunteers so volunteered on a summer play scheme and for the next sort of six years every summer holidays sometimes during Easter holidays and other other breaks I’d head up to the play scheme and support for people with complex support needs so it did a range of things there basically being at a play worker and just loved it just really really from the second about there. So have you seen a big change since working as 14 and to what age you are now that have you seen a difference in services and how the way people treat people with the disabilities have you seen like a big difference? Huge absolutely huge difference I think back then when I look back things were the things were about the services as opposed to the people whereas now the things are about the people and what we can build around those people and back then and there was I had some really really positive experiences and obviously have led me to stay in this sort of career and led me down the route that I’m on now but when I look back to how things where it was incredibly difficult for people to be heard and be seen as individuals it was very much about the collective back then and it was about how you could make somebody fit into something that already existed where that’s changed now I think.

Right so you work for Autism Together so tell me a little bit about Autism Together and how long have you been working for them now? I’ve been with Autism Together since 2003 so they get 17 years and the organization and prior to Autism Together I worked with a couple of other places but I stuck with them because their values kind of fitted with my own and it was bounced around a couple of care organisations after finishing with the play scheme and it just never felt right where it was Autism Together the culture felt right from the second a step foot in really which is why I’ve been here as long as I have. The organisation itself has been through a couple of re-brands if that’s the right term so we started out as the Wirral Society for Autistic Children and that was back in 1968 and I think part of the cultural stuff and the value stuff is because we were set up by a group of parents so those parents didn’t feel that there was anything appropriate for their children that were on the autistic spectrum there was nowhere in adult services for them to sort of move on to and so they had quite a big battle back in the in the 60s and so we’ve been going for about 50 years but that’s that’s kind of where our roots were one of the first sort of organisations to really identify that there was a real need to accommodate and to support people on the autistic spectrum away from their family homes and I think prior to that people had just had the expectation that people would stay with family forever or they’d end up in services that didn’t really meet their needs but there was nothing else around for them almost. So services and is autism together is it for children and adults or is it just for adults? We’ve run a range of services we’ve got residential services and supported living services that are for adults primarily over anyone over 17 can apply to our services but we do run children’s groups we’ve got a range of family support groups a whole range really to be honest there’s a lot of things that we cover in terms of supporting individuals themselves but also family members and the local community in terms of acceptance and awareness as well.

So how far do you reach out then? So it’s the Wirral and anywhere else? Yeah we’ve got a service in Wales as well and we’ve got a couple of services over the border in Cheshire so one of the reasons we changed our name we went well from the Wirral children’s group we moved on to Wirral autistic society but we didn’t really feel that that covered everything and so we changed our name again to autism together which is much more inclusive and doesn’t limit us to that Wirral area really. So what people know that I’m quite interested in diagnosis and how long it takes for children to get a diagnosis or an adults for that reason is do you know how long it takes because I know obviously it’s different for every region but now with the lockdown and everything we’ve experienced the waiting lists are getting a bit longer and so what what’s it like in the Wirral? I don’t think the Wirral is unique in the fact that the waiting is far longer than anyone should be expected to wait and there’s a real difficulty with finding people who are qualified to give the diagnosis I don’t really know I haven’t really got a handle on how long it takes individuals to get that diagnosis I tend to to sort of be introduced to them a little bit further down the path but certainly when I was in children’s services it was it was a long time for people to get and what is tending to happen is people will get a more generalized label and as opposed to the label of autism and that can be more difficult and more challenging for people to access services we don’t limit people to that we say you know we have a very open conversation about what the person’s challenges are what diagnosis they’ve got but we don’t limit providing a service if someone has got a broader term so autism spectrum condition or autistic traits or anything like that is recorded then we will engage with with what we can do to support that person so before you start work and are you a 14 before did you ever heard of autism before and can you remember the first person who you worked with on the autumn spectrum what was the experience I can’t I hadn’t ever heard of autism before and the group the place scheme that I volunteered to work at was in the special school as it was then around the corner from where I lived and I’d seen a lot of the kids out and about and obviously recognized that they had additional needs but didn’t really know anything more than that and so when I started at the place scheme I got a very very brief introduction into the range of needs and support needs that the people I’d be looking after sort of had and actually I don’t think at that point anyone mentioned autism either I don’t think it was till some time later looking back on those experiences I think that the children that I gravitated towards and that certainly gravitated towards me were those that had sort of social communication difficulties and and really struggled to form relationships and bonds and and they were the guys that I was really interested in and the ones that you had to almost fight to build a relationship with it wasn’t just handed to you you needed to to work a bit harder to find out what made them tick and that that sort of really piqued my interest and it probably wasn’t until a good deal later probably when I was working in children services in a children’s home that I heard the the label or the the diagnosis of autism and then went about sort of finding out what that was and and what it meant for the people that that had that so you manage a residential service for the autism together organisation so how do residential services for those with autism differ from supported living service I suppose in essence the only difference is the funding route and accommodation status certainly for us as an organisation in residential care people are funded or commissioned they have a package of support and in residential that includes their accommodation as well as their hotel costs food and utilities so it’s basically a whole package that is commissioned for an individual but in supported living it’s actually only the care or support element that’s a commission service as the local authority or the CCG which is the clinical commissioning group will put a package of support together or ask for support around a particular group of needs or areas that the person needs and then things like rent bills anything that is you know sort of above and beyond that direct support needs would be taken care of out of the person’s benefit so that they claim benefits as as an independent person and then they may need support or may be able to do that independently in terms of meeting those requirements to live in whichever address they live in and I think for us as an organisation one of the things that is really important to us is that actually in both cases it’s about delivering that person-centered care and so helping them to identify their strengths and aspirations and building that package of care and support around them and involving the person as much as possible so making sure that we’re helping them to identify what their own outcomes are and regardless of their accommodation status it doesn’t really matter the support you live in a residential it’s about making sure that they’re engaged and that they’ve got you know that they can contribute to that reward in life and that they can take a leading role in that and if they can’t be involved in some of those bits involving family or people who are close to them in making the right decisions to enable them to be as involved as possible really and I think really traditionally the residential route was probably chosen for those who had more complex support needs or those who might have needed to be placed outside of local authorities area because they needed specialist support that the local authority couldn’t you know couldn’t provide yeah but in more recent years has been quite a big shift in social care and actually the local authorities now prefer very much prefer to commission services for people within their own sort of area and that makes sense families there links are there that makes far more sense I’m just thinking so people listening in there might be just on the start of this journey and it’s they start in the transition or it’s in the next year it’s going to be their transition year what advice could you give because obviously I highlighted transition with Katie Price in Harvey and made the documentary so obviously 18 now and he’s going to be starting his new placement in September so what advice would you give to a parent and to an individual on the spectrum well to make it easier for them to transition because obviously it’s a scary step so what so what advice would you give and recognizing it’s a scary step I think that’s a huge thing and actually the the pressure that families and individuals put on themselves to get that right is huge and you know when and there are some things that are beyond everybody’s control so recognizing that it is such a huge step I think is really important and I mean there’s some practical things to consider really and one of the things that I’d advised people to look at is do as much research as you can on the proposed provider so so look at the CQC website and CQC regulate care homes and but they also regulate support living in in terms of the support that’s provided and slightly more removed from accommodation in that sense but it will still give you an insight into what the care provider is like and so to do some research have a look so there’s any testimonials or anything online speak to people and one of the things that autism groups have in their favor is that they’re very open and they’ll speak about their experiences and they’ll speak about what’s gone well as well as not to come you know what’s not gone well so people can can really gain some insight in terms of what it is that makes that provider good or not so good as that that’s the case and obviously involve the person that’s moving as much as that goes without saying I know you’re you’re the guys that are listening to this will do that but involve them as much as possible try and work out what meets their needs but also what they want and try and make a list and it might be that you make a list and you have to negotiate or compromise further down the line but knowing what your loved one would like in some cases is just as important as what they might need and so for a lot of our guys a deal breaker might be the size or shape of a room and because they do a certain route or you know so it’s there’s no point in looking at something if that’s not achievable within that sort of area so it’s about identifying what that is really and ask for pictures or videos of the proposed place one of the things we found really useful is taking pictures particularly if it’s a new tools service or you know a new support service where it where somebody’s not seen before it’s really difficult for our guys to imagine what that might look like so we’ve had some really good success taking pictures of the empty rooms taking pictures of people’s own personal possessions and kind of overlaying them over the top of the image and so people have got you know a solid reference point really to aid that decision-making about and being able to support them to see what it might be to live there and if time allows we’ve had some real success with using most of these so if somebody’s moving somewhere that’s you know a little bit further away or not from that exact location because it’s very difficult to find something that might be next door or you know so close that they can use the same amenities so identifying the chippy or the pub or the paper shop whatever it is that’s important to the person it’s local to the new service and starting to take trips there so the idea of introducing that new area is much easier because someone’s got a reference point to that you know they kind of well it’s around the corner from the new paper shop it’s around the corner from from that pub that we went to it gives people context almost elements but the biggest thing is just ask questions you know ask either provider is not is not allowing you time and space to ask those questions then you know that there’s something going wrong somewhere because everyone has to recognize what a difficult period that is yeah and the other thing is about training so what sort of training to the staff that are going to be supporting your loved one have you know what what sort of qualifications are available to them and the biggie is what supports available so if things go wrong what will happen you know what how can that staff member access support how what kind of processes that are to manage those sorts of situations and then once you’ve identified an appropriate places having a clear defined transition plan written down so everybody knows what’s expected and at what point people need to do things really it is so difficult and it’s it’s so unique to each individual person it’s that plan has got to be written around that that person what motivates them to make the placement work but also what things we need to avoid so we avoid failure yeah really and trust is a huge thing because people sometimes have been let down in some areas so they’re obviously very wary and now with everything we’re going to talk about the pandemic and how it’s affected autumn together and here as well as a family so because obviously it’s been difficult for parents to go and visit particular places it’s all been online um so and obviously i couldn’t make a decision like if i was making the decision for one of my sons i couldn’t make it by just looking at something online i’d need to physically go there and visit so talk to me about what how how is lockdown and covid impacted on your services and you as well as a family i mean it’s it’s been massive hasn’t it it’s it’s been absolutely huge for everybody um really and i think personally as a family i mean we obviously um having reuben during the the lockdown meant that we had very limited support from from our families you know and both of us are very much our families are very very important to us you know the the things that that drive us that that keep us sane really yeah um and having that contact sort of i mean it wasn’t severed because we were able to speak to them on the phone we were able to video call but the practicality of having a new baby during that period was was you know it was quite quite daunting um you know we we’ve managed and we’re through it and you know he’s he’s thriving uh now he’s you know he’s meeting all his milestones and but but all of those worries that early on um really did have an impact uh in terms of the the services i mean it everything changed overnight you know and i think for our our guys who live with us um they have coped so so well and actually much better than we fear because when it all sort of kicked off when everything started happening you know we had lots of meetings about how we were going to manage and actually at that point i know we didn’t even know what we were going to be expected to manage but you know how are we going to put things in place to to limit the impact on people and actually the reality was was we couldn’t you know there were there were so many things happening with such uh ferocity and so and such speed that you know we were just powerless really and nobody knew what was going to happen and when everything closed down uh there were i mean practical things things we could have predicted would cause a problem for our people so changes to routines we knew that was going to be difficult you know we we looked at how we could mitigate that to a very small extent because somebody going out to the paper shop you know on a certain date it had to stop you know someone going for a pub lunch on a wednesday that was a really incredible part of their routine had to stop but even things like getting hold of the things we needed so some of our our guys who run very self-restricted diets um and at one point we had to put a play out for chicago town pizza because we couldn’t get hold of anything any you know we’d go to the supermarkets and the the shelves would be because people were people are mass for panicking weren’t they yeah they were and we just couldn’t get hold of the things that we needed um you know and and and things like food but then things like ppe you know the guidance changed and and all of a sudden we were expected to so and it was the right decision to keep people safe but it was so difficult to get hold of what we needed and preparation because you know what it’s like for our guys we have to prepare for church and it just like it just happened and then obviously the change within the shops as well you know the social distancing and what you had to do and it was just yeah as i’ve shared before as well even like simple things like going for a walk you know with my son you know normally you would be able to go into the cafe or you’d be able to sit outside the cafe on the bench you know they’re all taped up and i’m talking as if to say well they don’t they’re not normally like that so why have you got a mask on and take that off yeah absolutely it was there were so many changes and i think for some of our guys the global change of everything happening at once at the same time helped um but for some of the guys it made it more difficult um you know because they could see what was happening in the world outside and the anxiety that we all carried all of us about what was going to happen and you know if we were going to be safe if our loved ones were going to be safe you know how were we going to get through it um was was sort of magnified for some of our our chaps who you know they they could see what was happening in the news but they couldn’t really relate it to what was happening to them and it almost snowballed for them you know it was so difficult what about vaccines were you was that was that something easy for you to explain to them or was it you know did you have somewhere they were saying no i’m not having it or yes i had a couple yeah we had a couple i think i think one of our strengths as an organization is i mean we’ve got nearly a thousand staff members so within that range of of staff we were able to find the right people to give the right messages at the right times you know and that was a real resource for us and using visual structure using um sort of supporting tools really and explanations and and obviously over time lots of things were produced that we could we could have a look at and we could adapt but in the very beginning we were very much sort of on the hop um inventing stuff you know and trying to support people to to have as much information as they could cope with to make those decisions um i mean the vaccines is is obviously a thing that’s affected and we were very very lucky our um primary care network were very clear that although we weren’t in the we weren’t originally classed as as being in the um the group that needed to be given the jab early on because we weren’t supporting older people necessarily when we got a very small amount that are over 65 they recognized that because we were in a care home actually we did need to to avail of that as quickly as possible uh so they actually fought for us and managed to get us slots in early january we started the vaccination program which is a good thing earlier than some of the other um people were able to do it you know because the local authority advice varied wildly um on the front really okay um you talked about people over 65 i’m always interested in um people over 65 diagnosed on the autumn spectrum because there isn’t that many articles about 65 without sort of giving anything away about your particular residence but what change is there any changes or anything different about people you know over 65 i have read some articles where they talk about dementia and autism so is is is there anything that you can highlight um i i don’t think there’s enough studies gone into to that particular age group and i think certainly from from our perspective anyone with us who’s over 65 has been with us since they’ve been in their late teens to to early 20s so they’ve been with us since they’ve been relatively young um we have very few people referred into us of that age group if any at all actually um it’s it’s certainly something that needs more research and i’m looking at the the the dementia side we’ve been talking as a group about a lot of the some of the people we support display self-indigenous behavior um and obviously there’s a connection between that and and um and dementia and i think that there’s enough studies in regards to that obviously the recent ones about footballers isn’t it and heading of all um and that leads into to early onset dementia and things and i think that there needs to be more more specific studies around people with autism and how uh self-indigenous behavior but also how aging sort of might affect them you know and and certainly having a few older people in our services we’re very conscious as they grow older the things that happen to people as they grow older are going to happen to our guys as well um and it’s about how we get into a dialogue and a conversation with medical professionals if that person can’t advocate for themselves they can’t speak for themselves in regards to those changes that have taken place um because it can be tough it can be tough to to present at a GP you’ll present to a GP you know how someone’s behavior has changed when someone’s behavior hasn’t been consistent with those markers anyway previously so when they do the diagnosis for dementia they look at things that in memory and things like that and our people can’t communicate that so it’s very difficult to determine what that marker is um so adults then uh sort of from the mid to the upper end of the spectrum and um something else i wanted to ask why it’s fresh in my head if you had any relationships with your um adults any marriages or anything like that that you know that’s happened because of them getting closer or is it is there’s nothing like that happened not any marriages uh certainly not well i’ve been with the organization but yeah a couple of relationships um obviously people people are people regardless of any diagnosis um and and people gravitate towards other people and and it’s you know it’s a natural part of a natural consequence of spending time with people isn’t it is that you grow closer and and potentially relationships form and fail just just like the general population yeah um but yeah we’ve had a couple of our guys in relationships with the other people who live within the organization but more often than not it’s people who live outside of our organization um you know so people who live either in other supported accommodation or people who who live you know on their own in some cases as well okay so talk to me about um how you’ve adapted you’ve talked to me a bit about it but how have you adapted your work in practices during the shifting landscape of the pandemic and the changing guidance for those in social care and just briefly before you go into that i just wanted to remind everyone about my petition um because obviously the question at the back of many many many parents minds is who’s going to look after my son or my daughter when i’m no longer around so if you have signed haven’t signed my petition or if you have signed it thank you very much so the link is www.change.org anna petition just to remind you again www.change.org anna petition um and i think i’ve got something like ten and a half thousand signatures so far so um i have been contacted by the department of social care and health that’s saying that they would like to make with me to talk about it but um we’re now obviously having to wait until september uh when everything’s sort of back to normal whatever that is um so yeah so if you haven’t signed please sign my petition so back over to you um michelle so if we can talk a little bit about um you know wider issues for social care i think yeah i think for us it’s definitely thrown a light on it and i think actually universally there’s there was lots of coverage early on uh about you know the the impact that carers and you know that whole movement clap for carers clap for the hs and you know the the immense pressure that people were were under um but i think for us particularly in residential um and i touched on this earlier around our our services range from a small community property that is you know in in an ordinary street um we’re supporting two people uh we’ve got a number of services uh like that you know a crossword role and and Cheshire and and those services were expected to follow the same guidance as our larger residential services um the the biggest challenge for us was the fact that our services certainly in the beginning and you know there was some reference later on to how someone with autism may be affected by the pandemic but certainly in the beginning any registered care home was expected to follow a certain set of guidance and that guidance was very clearly written for older people services you know so it expected that our people wouldn’t be going out into the community it expected that that our people would just stay in their rooms um you know and that was never achievable in some of our services in a lot of our services actually we didn’t want it to be you know one of the things we pride ourselves on is is our community engagement and the fact that you know our people are very much out living their lives as as anybody else would live their lives and it was a real challenge for us um but i think one of the big eye-opening things the thing that i’ve struggled with the most and it happened at the very beginning was that we had to have dnr conversations with family members um because the initial guidance was that you came from a registered care home it was a blanket um do not resuscitate if you got into hospital yeah and obviously that was just horrific for for us you know and i’m not saying it wouldn’t have been for anybody but we support young fit people um you know and to have to pick up a phone and speak to a family because we couldn’t have a face-to-face meeting even and speak to a family member about how we wanted to record that we thought that that was inappropriate so that if their son or daughter ended up or sister brother loved one ended up in a situation where they contracted covid uh they were in hospital we wanted to be very clear that they they should be resuscitated um and i think it was a it was a value thing for for us it was you know almost like our people had been disregarded as people whose lives didn’t need to be protected it was it was just it was so shocking and and awful to to to kind of get our heads around those conversations and it was just because we were grouped in with with older people’s care and obviously it changed thankfully um but but those initial conversations were so so difficult um but all of the guidance is written with nursing homes in mind so they talk about staff members obviously wearing masks and that’s a particular challenge for for some of our our people i mean i’m very proud to say that all of our care homes all of the people that we support have been supported to understand why people are wearing masks and have accepted it now it was very very difficult in the beginning very very difficult you were not see-through ones no in most cases the the standard ones because the others are so difficult to get hold of we try because we’ve got a couple of our guys uh have difficulties with hearing so rely on reading um but the the guidance doesn’t support them unless it is a IR mask um so all sorts of challenges there in terms of of getting the equipment that we needed in the first place but then getting appropriate equipment for what we needed um but all the guidance talks about things like staff rooms and break rooms and you know our our homes that our homes are very much set up as the individual’s home the person who lives there it’s their home you know and we put a lot of effort into supporting the staff to understand that it’s not a workplace although clearly it is but it’s not a workplace it’s where people live it’s their home so we didn’t have those places for people to go and eat their meals the other thing for us is we very much encourage our staff to eat with the people that we’re supporting we provide meals so it’s a it’s a good inclusive opportunity there’s so many positive experiences that people can have during a meal um if things like you can model turn taken you can model there’s so many things that you can do during preparing and eating eating a meal and for a lot of our guys food is a big motivation um all of that was taken away because the guidance clearly says we’re not to eat with people anymore you know and and it just everything just changed it and i think for certainly for me and some of the conversations i’ve had with my managers who run those homes it almost dehumanized people you know and we had some real difficult difficult conversations particularly with our our guys who were more aware of what was happening you were listening to what was going on and they’d be saying things to us and there were several examples where they say to us so you’re telling me i can’t do that because i live in a care home you know and and no other there’s no other answer than well yeah that that is unfortunately the position that we’re in you know it’s it was really difficult really really difficult those things in private now would you say um yeah they are improving and i think we’ve taken a very sensible approach to risk management um so we haven’t we haven’t not followed guidance because that wouldn’t be the right thing to do but we have interpreted the guidance and we’ve put a very robust risk management process around uh so if somebody needed to do something to fulfill a routine if it would impact significantly on their mental well-being or their mental health then we risk assessed to allow them to continue to do that um you know where they were able to and in some cases it was easy when everything was shut because you could take people and physically show them that mcdonalds would shut or you know whatever it was closed but as things started to open up and for our guys who could understand social distancing and everything else it wasn’t a problem we could risk assess for that to happen but for some of our guys who really struggled with that it was it was really difficult because we couldn’t take them and show them it was closed because it wasn’t closed but actually couldn’t take them at that time because it was fully booked and we couldn’t get a table then or we couldn’t take them at that time because something else was going on and it so it presented it solved some problems but presented more as we went along really okay and families are able to um meet now with their loved ones oh yeah and i think pretty much all the way through the pan but all the way through the pandemic if it was deemed that it would significantly impact a person’s well-being emotionally um then we allowed we supported visiting in a range of different ways um and there was a a line in the guidance around um exceptional circumstance um and we used that a lot because a lot of our people would have suffered significant um it would have had a huge impact of them not being able to see their loved ones in some cases we weren’t able to write risk assessments to do that because you know there are a range of things that happen and if we could argue the individual would be distressed and we could put those risk assessments in if it was because in a lot of cases it’s about family and recognizing that actually family want to see individuals it was a little bit more difficult um because by the nature of the risk assessment the family members should be able to understand the guidance and everything else but it it was an impossible situation trying to manage that um and we’ve embraced a range of new technological things to try and help with that um and actually in some cases it’s helped because some of the people that we were supporting are able to engage in things because it’s on a computer screen as opposed to being in a physical room and they can get up at lee and leave you know well they can get back to doing something that they find rewarding within a matter of seconds from leaving that you know on my meeting so that there have been advantages yeah um you have to look hard for the manner but they are there it was about i think it was something like five years ago i was asked by autumn together to support um a campaign that you were doing on mate crime and it was about um obviously our vulnerable adults you know on the increase been involved in mate crime so um since covid more and more adults have obviously been online and have been on social media so some bullying has increased but i’ve been made aware of mate crime on the increase so um i just it was there was an article actually remembering now i think it was a few days ago now it was on the BBC and ITV and it was also on the radio that’s right and i was listening to about a 15 year old autistic individual that was targeted by gangs and forced to sell eight class drugs in wales um and five men i believe um have been jailed for a total of more than 40 years after text from the boy to one of the gangs were found describing how he was broke and hadn’t eaten since yesterday messages from him to the drugs line number requested food were repeatedly ignored in the last few years um i have been made aware of violent groups some really horrendous stories um taken advantage of autistic children and adults who have the desire let’s say to be liked and accepted um they’ve been convinced to act as mules trafficking drugs between towns cities and the countryside a system known as county line so i’m not quite sure if your campaign is still um going ahead but i’ve been raising awareness about it within the last few years because i was invited also to um a prison and also um to a young offender’s prison and um actually one of the governor that’s no longer at this particular prison his grandson was on the spectrum so he was obviously very worried um about you know autistic individuals so um have you um had any experience of that with some of your residents at the home because of them obviously being online more because of lockdown um but it’s just i’ve been made away and obviously because of what’s happened in the media within the last few weeks it’s been highlighted more and one thing i just wanted to say was that um i spoke to um training for care who have the autism reality experience and i know um a prison officer who’s got a son on the spectrum who wants to highlight within the prison about what it’s like to have sensory overload so the training is going to go ahead for this particular um offender’s prison um so yeah so i’m just wondering if it if um you’re still carrying on with that campaign because i think it’s really important yeah we we are we we conducted a survey back in 2015 that’s right um early 2015 january february i think it was um it was an online survey obviously because we were targeting people who were accessing sort of stuff online and and the results of that are on our our website and actually there’s there’s some help and support information on there as well it identifies what might be classed as a make crime gives people real examples about what that might be and and also the the findings of the survey are on there as well um so yeah it is something that we’re still uh sort of following through and and very much involved in um i don’t know of any experiences of any of our people during the pandemic it may be something that comes out later down the line in regards to you know people’s experiences um but it’s very much something that we uh support our staff to look out for uh one of the how do you monitor that sort of thing because obviously you know they need to have their own individual lives um your um your young people and adults there but how do you monitor um what they’re accessing online if you like without being intrusive yeah and that’s the difficult line i think and in most cases we don’t monitor what people are accessing unless there’s a defined care plan around somebody’s particular vulnerability or it’s been identified that someone’s had issues with that in the past and it’s part of the commissioning sort of strategy to to help with that um the big thing for us is about making sure our people that are online understand what it is um so so getting them to understand what it is and and and supporting them to raise things if it hasn’t when they come up and for the staff it’s it’s a little bit of detective work so if somebody’s asking for additional money for something without being intrusive trying to source out what you know what it’s what it’s about or what it’s for somebody’s simply disappearing off um you know with with a wallet full of money and then not coming back with anything then flagging it up to the appropriate people if somebody’s mood changes following online interactions talking to the individual about that so but it is it’s very difficult to and and that’s one of the the issues with it it’s very difficult to to monitor and highlight um particularly because a lot of our guys fall into the trap of believing that they are you know people who are genuinely their mates and that’s the the whole purpose of it isn’t it is to to take advantage of someone by promising something that’s never there um but it’s it’s really really hard and as i said there’s nothing at the moment but that’s not to say that it won’t come up because this tends to come up a little bit later down the line when people start to to sort of open up about it um it’s one of the things we ask uh the people that we support as part of our sort of surveys that we we do is you know how’s life outside of the support going you know is is there anything you need any more advice or help with but really it’s about the staff members being present and being able to answer questions and picking up on those subtle signs really okay so let’s talk about something positive what do you enjoy most about your job what do you get up in the morning and think yep this is what i love about my job working with people really um you know i i love working with people i have done since those very very early days um and problem problem solving um really enjoy collaboration so supporting people to discover what it is that they want even if they didn’t really know that that was what they wanted and going on that journey with them almost and you know seeing sorting out what they need because what people want and what people need aren’t necessarily the same thing yeah but in either case supporting somebody to achieve it or to get it um i love being part of a team and i think autism together that i’ve been so fortunate throughout the whole pandemic the the whole team has has come together um from late night pizza hunts as i mentioned earlier um to uh to you know just being be in the group of people that come together and even if we don’t agree on things we can respectfully disagree but everybody’s opinion is valid um and i think that’s really where you get to a point where it’s true collaboration you know and listening to the people that we support and what it is that they need and and how and supporting them in how to achieve that and it’s been more difficult in the last sort of 18 months but it hasn’t gone away um you know and i’m immensely proud of my support teams you know the the thing that’s kept me going over the past 18 19 20 what we are month 20 is it um has been the fact that i know um the fact that they get up every day and they come into work and they do the very best that they can for for people even though they’ve got their own concerns and and worries you know and and i mean that that for me is has just been the most enjoyable part i mean you said at the beginning i started as head of residential services in 2019 so had not not really been around very long when the pandemic um started uh so you know sort of seeing that whole change of of how we work and what we do and being being integral being part of the decision making of is something probably that i’ve enjoyed the most so if people are listening in who might want to find out a little bit more about autism together where can they find you and do you have social media handles as well uh we do um the best place to get us is uh probably the website or facebook um so the website is www.autismtogether.co.uk um and if you search autism together on facebook will pop up uh we are based in bromborough but we do offer services across the world at Cheshire and and Wales as i said earlier um yeah um it’s just to to remind people of what services you do offer so can you sort of give us give us a range of what it is that you do offer yeah so we do um residential services i manage residential services we do sporting living services we also do day services um it’s been very difficult for those guys during this period but we offer services through the day monday to friday currently for people to go and experience new things um we’ve got a range of family groups um support groups we do children’s clubs there’s a couple of youth clubs that we run as well as siblings groups um we also help we do training yeah we do we train um external bodies we do offer training for families as well if if that’s something that people are interested in um we also manage uh a um uh what’s it called uh it’s called it was an old landfill site and it’s a beautiful walkway and um just lovely the the views from there are lovely but with the people that we support we help manage and run that location which is great we’re actually just fundraising for a defib to put on that site if anybody’s interested in in doing that if you if you look for us in together and look for our um it’s www.aedonate.org.uk forward slash projects forward slash autism together forward slash they just look on awesome together that’s my thing to remember so if they look on awesome together i’m sure they will be able to find it on there so let’s talk about obviously you’re a busy bee and you have um a young family what did you do to relax before lockdown what did you do to relax during lockdown and what are you doing now um probably probably not a lot changed for me you know i think i’m very lucky in the fact that my biggest release really um after a long hard day or week or months or 19 months 20 months as we are now um is is very much my family and that sounds really cliche i know um but you know my parents my brother my sister my nieces and nephews who i’m immensely proud of um i’ve always been a really big part of my um of me really and and helping me to put the world into perspective um kids see things in in a very very good way particularly when you’re stressed and i’ve always relied on on them to to help me with that really um and i love spending time with them and they always see me right you know they always sort of you know put me on the right path and and that’s continued through lockdowns although obviously at times it’s been distanced yeah we’ve maintained that relationship uh spending time with nieces and nephews and planning our next adventure i mean that’s been something i’ve been able to focus on uh they are getting a bit older now but you know the i’m so so proud of the the people that they’re becoming really proud to be a part of that do you listen to music or anything like that or read not not really i like film um i particularly like sci-fi because of the escapism although i have to be honest it doesn’t feel like much i think we’re moving towards the day when there’s no such thing as sci-fi anymore uh but i do like films um i started colouring in during lockdown that’s probably one of the things i’ve heard there are quite a few people that bought some like adult colouring in books or they’ve downloaded stuff online um and they find it quite relaxing to be to be fair my mum’s um in her 70s and she started doing it she used to do it when she was a kid and then she’s just sort of taken it up again and she said she finds it really relaxing she can sort of switch off that’s exactly it i mean um the wife bought me a swear word colouring book a what obviously heard the expletives coming from upstairs so it’s basically a series of swear words written down and you just colour them in um that really helped that really helped uh also started chili dipping which is uh all of age at the moment so we’ve started going around to new bright in front and basically just going in the sea um but really enjoying spending time on the beach with the baby and when i was a kid we spent lots of time down new bright in front uh you know just on that we’ve taken picnic down for the day um and just rediscovering that really with the baby and some friends and you know it’s just really helped with with my emotional well-being i mean some days things have been pretty tough um but having something to look forward to to just switch off and spend some time there um and i think the big thing is just being able to talk talk through any concerns and fears with like-minded people you know and i’m really lucky because i’ve got that both in my professional life and my personal life people i can turn to and be honest about what’s worrying me and and and i’ll find a solution for it really just just talk it through and and find a way forward i think sometimes people are worried about asking for advice or speaking to people because they feel that oh they shouldn’t be doing that or they you know they should be they should like you know what’s this stiff upper lip that um that english people say i just think if you need to ask for some advice or need to talk to someone you know please do don’t bottle it up to yourself because it’s it’s no good for you because you know especially if you’re like a parent like yourself or like me you know that you know you’re a linchpin to the family um you need to talk to someone you need to offload whether it’s online whether it’s on the phone whether it’s via zoom however you do it um i think it’s really important that you do that for your own mental health and well-being and please don’t forget about yourselves everyone you know i go for a walk or do dancing or whatever it is that i do exercise to to keep me going to keep me going one day at a time because like it’s tough i know things are easing but we’ve still got lots of worries you know you the news is just not good news at the minute when you’re watching it on sometimes i just think oh i’m not watching it tonight it’s just too depressing um but yeah it’s good to talk so um i just want to say yeah i just want to say thank you very much for joining me today um you shared so much information lots of food for thought and really helped you know people are starting to think about transition start thinking about you know this their their loved ones are turning 18 19 and you know not quite sure what it is that they need to do so you’ve given a lot of food for thought for that um and there is going to be an article that michelle is going to be writing that’s on the charity website so if you check it out it’s www.anna kennedy online.com it’s on the latest news if you want to check out about autism together and the work that they do all the links will be incorporated within the article so again i just want to say thanks very much michelle for joining me i’ve really enjoyed talking to you and all the best please to give to everyone at autumn together and to your family and um thank you for joining me thank you very much it was lovely to speak to you thanks a lot oh thank you so much and yes everyone again you know keep checking out the charity website for everything that’s going on all our latest news is updated every week so it’s www.anna kennedy online.com if you want to follow me on social media at anna kennedy one on twitter anna kennedy online on facebook and at anna kennedy obi on instagram please everyone stay safe keep going i think we’re getting there not quite sure but i’m sure we are and um all the best good luck and bye everyone until the next time