Hello, this is Anna Kennedy. We’re talking all things autism and it’s so much cooler. Everyone’s been suffering with the heat.

But hey, it’s a lot better now. So I can’t believe how fast this year is flying by already. It will be August very, very soon.

So just a few little bits, just in case you might have missed them, of news that has been happening throughout the weeks. So very good news and I’m keeping my fingers crossed that they’re going to stick to it. The government invests millions in better support for autistic people in England.

So it’s the new autism strategy. So I’m just going to go over a few little bits that you might be interested in. So they are going to be investing 10.5 million into finding new ways to reduce diagnosis waiting times for children and young people.

Hurrah! As you all know, I am a little bit of a stickler about diagnosis because so many parents that messaged me about how long they’re having to wait. And as I’ve said before, it’s very much a postcode lottery. And as you know, as a charity, we did do a survey where 2000 families completed the survey and on average, people were waiting five years, which is such a long time in a child’s life for a diagnosis.

And as I’ve said before, some parents are waiting a lot longer. So hopefully, that will reduce the waiting times. They’re saying between six months and a year.

And they’re also investing 2.5 million to improve the quality of adult diagnostic and post diagnostic pathways and diagnostic waiting times. So again, I spoke to adults where they have gone to their GP and asked if they could have an assessment. And they might be in their 30s, 40s or 50s.

And some of the GPs have actually said to them, well, why do you want to know? You’ve got through life this far. So why would you want a diagnosis? And it’s like, well, I’m coming here to ask you for the assessment. So really push.

And if you feel you need to take someone with you, please do. Increasing public understanding of autism with long term nationwide initiative. So obviously this is all good, but we want understanding, but we also want acceptance.

Providing 18.5 million to prevent autistic people from falling into mental health crisis and 21 million to local authorities to help people in mental health hospitals back into the community. There’s been a lot of stuff in the media lately about our autistic adults that have been in hospitals for years. It’s just an absolute tragedy.

And we should be ashamed that this has been allowed to happen. And the very last piece that they’re saying is improve understanding by training educational professionals, job centre staff and frontline staff in the justice system have spoken to a couple of adults actually just last week saying that they’ve been going to the job centre and they’ve had a positive experience. So we want more of that.

So in total, they are going to be spending 75 million and represent the biggest investment in England’s autistic people ever about time. That’s all I’ve got to say about time, because the the so many services that are in crisis and as a charity, we’re always getting messages either through the charity website or online or even telephone calls. As you know, I get sent in lots of different books.

So a book has been sent in to me. This is the second book written by Helen Eaton. I was sent in the first book, which was very popular.

So this is Anna and Ruby Friendships and School. So basically, it’s very beautifully illustrated and explore relationships, interests and learning. Anna is struggling at school as his needs and learning preferences are not being supported.

His friends are frustrated as they feel more could be done to help him. Ruby has a new interest and new friends. Both are proving to be a distraction and her friends are not a positive influence.

Join the families through this graphic novel, as together they seek to understand autism and the impact on learning and friendships. Just to remind you, it’s Anna, spelled A-R-N-A, and Ruby available on Amazon. Just to remind you about the Autism Hero Awards.

Not long to go before the actual nominations close. So that’s going to be the first week in September. So if you’re interested in nominating someone that goes the extra mile, it could be a parent carer, it could be a young person for personal achievement, support group of the year, outstanding education, people autism hero award, creative arts, leading business, sibling.

We tend to forget about our siblings and I’m so pleased to see a lot of groups that are popping up supporting siblings, lifetime achievement and online social networks. So the first week of September is the closing date. Second week of September, our judges are going to have the hard, hard task of choosing three finalists for each of our category.

So the judges are David Grant, MBE, Casey Ainsworth, DCI, Dionne Brown from the Metropolitan Police, Dr. Pam Spurr, Joe Luck, Kelly Croft who’s founder and born anxious, Russ Kane, our very own Russ Kane, is going to be a judge, Johnny Jenkins, founder of the Women’s and Men Radio and he’s also an editor and a political editor. So if you would like to nominate someone please do check out the categories and yes I’m so looking forward to reading them all but so glad I don’t have to choose which one is going to be the finalists. Everyone will then, all the three finalists from each category will travel down to London to the Chelsea Harbour Hotel for a three course meal, entertainment, lots of tissues needed for when the winners are announced.

One thing I’d like to share is about my son Patrick and he’s very much into reading at the moment and his favourite book is Jurassic Park. What he did was he actually wrote a review on a website that’s called Quora and it was picked up by someone called Jamie Crichton who is a very well-respected screenwriter. He has written The Pines, Grandchester Four, Law and Order and many many more and he was very impressed with Patrick’s first review.

Patrick was beside himself and he said he was so inspired and he said we need more reviewers like you in the world spreading positivity and inspiring people. He said it was so refreshing to read Patrick’s review so it was actually shared as well where he works at Pine Ridge Studios during through the internet so that’s something else he was giving him a bit of a boost so I think that might be something that he might start getting interested in is writing reviews. So my guest today is Zvetlana Catova and Zvetlana joined the team of Inclusion London in August 2016.

She is a disabled lawyer who has spent many years fighting for the rights of disabled people. Zvetlana managed the Disability Justice Project and is now responsible for the work on the policies, campaigns and justice team. Over the last 12 years she has worked on various advice and policy roles enabling disabled people to fight for their rights at local and international level.

Zvetlana is passionate about ensuring disabled people have equal rights and delivering effective, accessible and holistic services that make a real difference for the disabled people’s life. So welcome Zvetlana and how are you today? Hi, hello Anna. I’m well, thank you.

I’m glad it’s not as hot as it’s been. It’s not so bad during the day, I actually quite like hot weather during the day. It’s the night time, it’s just so humid you can’t breathe.

Yes, it’s true, I agree with that. So tell me a little bit more about yourself. So where were you born? Tell me a little bit more about growing up.

So who is Zvetlana? You could probably guess by my name that I’m not English. I’m Russian originally, it’s a Russian name. I was born in Russia, well I’m old enough for when I was born it was still Soviet Union.

And I grew up there and then I moved here with my husband just because we wanted to create this new challenge in our life. And so I myself am visually impaired. When I grew up I had to go to special school and I was lucky I spent one year in America as an exchange student.

That was the first time I went to just mainstream school and was with just other kids and that changed my perspective on life I suppose and how things could be a lot. And then I went to law school back in Russia and then I was involved in what was kind of just a starting of disability rights movement there and we used law a lot. We brought like first for example cases around accessibility.

I was involved in the first case legal case about getting disabled children into mainstream schools. And then I worked a little bit with UN when UN Convention on the Rights of Disabled People was drafted. And then after we moved here I worked a little bit for big disability charities like scope and sense.

I worked as a kind of legal advisor as well. So I not only did policy work but obviously I did some advice work to help people advocate for their rights in the individual cases. And now I am at Inclusion London.

You’re a busy bee. Yes I’m not even mentioning other things. You sound very much like me a workaholic.

Sometimes it’s just like you just enjoy the work that you do so much that you don’t think about other things. So how long have you been in this country? It’s 11 years now. I can’t believe how time flies.

I still feel like yesterday. So how did you find the change? So moving from Russia obviously you went to America but then you came here. So how was it for you? What were the difficulties and how have you settled in and did it take you a while to settle in? Yes it did.

I think to me I was quite, I had very optimistic picture about how things are for disabled people. I thought that everything is perfect here because when I was back in Russia everyone was kind of citing the UK and England specifically as a good place, it’s the best place. And then when I came here I realised that that wasn’t necessarily true and I remember when just a year when we moved my friend came to visit and she’s on a wheelchair and we went and I was like oh I think things are more accessible here and we actually went with her just places in London and it was a nightmare and that’s when I realised how actually things are not great and then I myself I also couldn’t really get much help so I had to rely, I had to just make friends and rely on help from my social networks and that’s what I did.

But it takes time doesn’t it? So have you been visually impaired all your life? So you’re part of Inclusion London so Inclusion London’s mission is to promote deaf and disabled people to quality and inclusion and you do this by supporting deaf and disabled people to have a strong and influential collective voice and to deliver empowering and effective services to deaf and disabled Londoners. We are the only organisation run by and for deaf and disabled people working across every borough in London. So as you know this show is called All Things Autism.

So could you or can you remember the first person with autism that you ever met or spoke to? Yes of course so that was again a long time ago. My first job that I got was for the project that was aimed to support and build capacity of other organisations that are run by disabled people and there were several organisations that were run by people with autism than when I supported. So I don’t know if you want me to describe that.

It’s a very interesting organisation. So one was London Autistic Rights Movement. I don’t even know if they exist now.

I know individuals still do some campaigning work and at that time they were concerned about autism act and we had very fascinating discussions about kind of reasonable adjustments and how we see reasonable adjustments more kind of in the physical space but how you know you need to think about kind of sensory overload and other things which easily could be done but no one ever thinks about them and how we could do a campaign about this and yeah that’s interesting. Most of those people who I met first were men. I don’t know.

I suppose maybe they had more time to or maybe just how it happened. Yeah so quite passionate I think and quite we actually yes we then did some work on UN. I remember how I was kind of telling about UN convention and how we could try and kind of promote it here, how it changes the whole approach to disability and so on.

So Donna who’s a lady who has followed me for quite some time on social media, she recommended I speak to you on women’s radio. She couldn’t speak of you highly enough. So Donna couldn’t join us today.

So she’s a mother of five grown children. She has a daughter who’s 32, who’s autistic and has learning disabilities and several health difficulties and she’s been battling the system through health, education and social care for over 30 years. So she asked me to get involved in your campaign.

So what we’re going to do now is we’re going to talk a little bit more about it. So let’s start off with we’re going to talk about social care all right so maybe it’s worth starting by talking a little bit if that’s okay with you with what social care support is for because there’s so many different avenues that parents have got to go down when their child’s diagnosed with an autism spectrum condition or a disability. So let’s talk a little bit about why social care important for parents and their children.

Yes so social care is such a broad thing and it’s kind of delivered through all kinds of support services but I think to me simply put social care is assistance that people with different impairments or health related needs need to live a normal life. So it could be some people need help just to be safe to do very basic things like get out of their bed, wash, eat, get out of the house. Some people need assistance to understand information that they’re given.

Some people need assistance to communicate what they want to say and some people need help to look after their house, go shopping. Some people need help to build and maintain relationships. So all this is kind of covered under this broad umbrella of social care so and when we talk about social care we talk about care homes, we talk about more mostly thanks god people supported in their home where either some people go to day centers but many people have support coming to them to their home to help them do those basic things.

So I think I suppose when we talk about our campaign we talk about adults but with children it’s the same because there are you know I’m sure those who listen to this program know how much extra support families need with their children and that could be through education or when it is at home with kind of day-to-day life beyond learning it would be social care support. So if somebody’s listening in and they’re just starting on the journey for social care and they want a social care assessment, what would you advise would be the best way of going about getting a good assessment? Oh I think it is about unfortunately at the moment it is about kind of thinking through what your needs are, what support you would make a huge difference to you and then explaining this really well to those assessors that come to assess you. So it’s about trying to prepare and trying to not only think about the best day but being honest and kind of trying to think about different days that you have and days when you do need a lot of help as well as you know days when men are specific with this because I’ve heard some parents where they’ve spoken to me and they said they’ve actually put some positive things about what their sons or their daughters can do and they seem to have picked up on that particular area and thought well well you don’t need the support then so you’ve got to be I think there’s a very fine line on how you write the evidence if you like about your son or your daughter is there any tips or advice that you could give? Yes I think it’s I think it is really unfortunate that that the system basically makes us all complain and think about the worst things but I think absolutely I agree it has to be focused on what needs are, what help we need, what you know what individuals or son or daughter or young person who lives on their own wouldn’t be able to do without this support, what impact it has on their life and more you can kind of talk about the impacts and about specific areas of need that the better you have better chance to get some support or well I think it’s difficult let’s be realistic now social care support does not local authorities will not give you all support that you would you want or even all support that you need they are really driven by kind of resource like shortage of funding and and they try to make it as cheap as possible but people who can talk about their needs and the impact of not those needs not being met in in specific details and ideally with maybe evidence from professionals but it doesn’t have to be necessarily evidence from professionals if you can kind of make your case well yourself that those people get the most so it’s your organization somewhere where say for example someone has completed it and then before they send it in they think oh I need someone to check it over would they be would you be able would they be able to speak to you your organization and just say could you check this over please to make sure I’ve written it the way you feel that it should be written is that a service that you could offer oh no unfortunately we don’t offer this service but we do have information about the process and how how it should work and what people need to think about and by the way I think I think yeah so the website is called disability justice dot or dot uk and and there is a section about social care but there are also many organizations of disabled people that we support in well unfortunately we know about those organizations in London really well but I’m sure there are other organizations uh outside of London so we have a directory on our website where people those organizations could do what you’re asking about um so people want to check your website out what’s the um web address again please so so um we have two websites website our main website is inclusion London dot org dot uk yeah but if people want information specific information about the law and their rights um all the stuff that I put together um it’s disability justice all in one word then dot org dot uk if you just google disability justice project it will come up as a first thing okay and are there sort of template letters on there that people could there are some template letters as well as kind of just step by step guide some people find it very overwhelming with everything else that they’ve got to do you know look after their son or daughter try to hold down a job you know being a wife they’ve got siblings so it’s just you know it’s whatever help that parents can get you know that’s why I’m always looking for them is there a template letter that basically they can look at it and think oh I can adapt that and I can use it so that’s great that you’ve got some someone there have you found that because of everything that’s been going on with um covid and lockdown it’s impacted on social care oh yes absolutely I’m sure again now listeners will will will know this and and we’ve seen and heard um a lot of this well first of all government uh just generally decided that um they could uh uh make it easier for local authorities legally not to provide support that people need it at the time when they actually need it most right um and then obviously many families lost their support uh so day centers closed so what what do you do um some uh you just uh you know you take you you just take every day as as as it comes and and do what you can to to look after uh people there are people who lived alone they lost their support as well so we came across um uh people who you know struggled like struggle to get food struggle to get any help help with their prescriptions and and and struggled to even get in touch with those mutual aid groups that that were supposed to help um uh so may well it was on the mass people lost their social care support um and um and and and someone had to step in or people had to manage on their own um of course there are other other impacts we’ve seen a lot of medical appointments and routine checks cancer and that had a huge impact on people’s health and I think all this stressful situation where you to get any help you had to like spend hours on the phone and potentially not even get anywhere and not anything useful that had a huge impact on people and isolation was some i know people who are shielding since last march till now that obviously have had huge impacts on their mental health and did lockdown have an effect on your life uh well uh yes obviously did i um it i have i have a little daughter so i had to okay i had to work and and and somehow entertain her and educate her that was really um really challenging uh and uh i i just i am quite active person i i i do need contact with people and i i realized how much kind of i need physical contact with people you know just seeing somebody not through your screen but face to face yeah i miss that so there were times when i was really down and um i really was kind of stressed and struggled and was shouting all the time and just holding my head in my hands and screaming because i couldn’t just didn’t know what to do so what did you try we always try to promote mental health and well-being on the show so um i usually ask this question at the end so what did you do to try and get some you time i uh this lockdown actually i think in some ways did change my life i started to so i started to meditate i i i read before that it’s kind of useful but my brother really pushed me um to do this because he does it so i i started to do that um like every day and i start i give myself a promise that um every day i do at least kind of three nice things for myself be it sit for you know a few minutes with a cup of free in the evening or um just you know uh like look at myself in the mirror and say to myself that i actually look nice and i i uh i’m happy with myself so you know that’s something that i promote i always we have a campaign with our charity called the take five campaign because obviously you know as a parent and as a wife and you know as a chair of a charity and everything else that you do you have to take some time out for yourself because if you burn out you’re going to be no use to anyone so it is hard because obviously you know you want to focus on what it is that you’re doing at the time you don’t want to let it go but you must take time out for yourself even if it’s to walk around the block if it’s to go to the park if it’s to sit and have a cup of tea as you say and a biscuit or just go in the bathroom and have a quiet soak if you can you know in the bath whatever it is just to help you reset your brain if you like so you’re in the right headspace to to carry on so um let’s talk about because some people don’t know that social care is not free so can you explain briefly who and how how who pays for it uh yes so uh uh social so so uh social care is not free it’s tested um it’s uh national government gives some money to local authorities and um and effectively local authorities arrange it and um and and make sure kind of people get the support that they need but um uh and and we we probably or well maybe some listeners heard because it’s it’s kind of in a public debate now that people have to sell their houses to pay for a care home so um people with uh savings um uh over 23 000 i think they have to pay for social care for everything um and people when they move to care home if they had a house they obviously will have to sell it and and and that would go towards paying for their care but um it’s also i think what many people haven’t probably heard or realized that even people on means tested benefits have to pay for social care um and when we talk about means tested benefits it’s basically those benefits that are given to people when government recognizes that people need financial support just to leave like to to pay for basic living costs um and um in in that situation uh some of those benefits if you need social care will have to go to local authority to pay for the support that you need yeah so even if they go to day service like for example angela has to pay so much each month even though the local authority pay for his um day service that he has he only has day service nine till three thirty five days a week um so yeah so people don’t realize that you still have to pay a small amount i think for angela now it’s 15 pounds um he’s got to pay but some parents don’t don’t realize that that and then what happens is it mounts up and then all of a sudden they get a bill for like one thousand and something pounds because they don’t realize they should have been paying this much this little amount of money every month is that right yes absolutely i think we also with this campaign we came across quite a few parents whose children moved from children services to adult services and obviously when you have a child that that social care would be free well unless yeah and and then when um when they move to adult services kind of expect that that would be the same but this is when people realize or well and they’re told that they have to pay for it but um especially now local authorities didn’t really last year probably didn’t have staff or something to explain to people this and now they said sent people like huge bills for for last year’s support menu well most of which people haven’t received so this is just um yeah that’s what happened to me with angela as well because obviously there’s some of the weeks he wasn’t able to go in or he wasn’t he wasn’t getting the care and they still charged you for that particular week i said but he wasn’t there so and these are the things that if parents don’t speak up or don’t realize um you know they they can land with these hefty charges so um yeah so this is what your campaign is about i believe is that right yes we um we campaign uh to scrap social care charging we do believe that social care should be free like the nhs uh because uh just because this is kind of support to live alive uh and and the divide is really artificial you can have people receiving kind of similar kinds of support but if it’s funded by the nhs it’s free and if it’s funded by local authority you have to pay for it it’s really um doesn’t make a lot of sense um and and and yes and especially we we believe that people who already have support from the government through means tested benefits or benefits that are meant to pay for extra costs of disability like people or dla those people should be giving up those benefits to pay for social care is just wrong so when when um when did the campaign start and um how’s how are you getting on so we started in march uh we started because uh uh we we’ve been contacted by disabled people and by families uh telling us about those huge bills that they’ve uh got obviously we we always there was always kind of uh this uh desire in the in the grassroots disability movement to campaign on uh free social care and we believe it should be funded through taxation and should be free um and um and and we started in march because we felt like this is a time to to uh you know we need to do something now to stop this and people are asked to pay at the time when they can least afford to do this um and and so we’ve launched a petition um we also launched a video which is called tax on disability because we believe this is what it is you you effectively uh have to pay more just because you are disabled and you need this extra support but other other non-disabled people just do things like you you just get out of your house go to a park you you don’t think about the fact that you need support and you have to pay for that um so we we um uh did launch the film and now we are we have a campaigning group which consists of different um groups of disabled people’s organizations uh families uh um uh just uh other activists and and they’re all around the country and um and we’re trying to work together to persuade local authorities because local authorities have a lot of power they have a choice to decide whether they ask people to pay for it or not and how much they ask people to pay and i think local authorities had an easy ride in some way because they always talk about how you know they need more money how there is a huge gap in funding and they need to manage their budgets and i i sympathize with that and and it’s true but they still make financial decisions and choices and and they choose what to spend money on and what not to spend money on and we know for example in London there is local authority Hammersmith and Fulham they do not charge for um home care at all so it’s a precedent there haven’t it’s possible to do and there are some local authorities that take less proportion of benefits than others so it’s not as though they all have to do it they do make this choice both of course national government is responsible in this as well and and we want to try and influence them as well so you have a letter that’s um on the website that if parents or um individuals want to uh campaign and support so i sent uh the letter to Boris because Boris is my um MP for RICELIP um and so i just a little bit of the letter people are interested that they might like to um uh share it to their MP it basically the beginner of it says i’ve put dear Boris Johnson i’m mailing you emailing you as your constituent and an autism advocate and chair of the UK autism charity Anna Kennedy online to ask for your support to scrap social care charges social care is unfair and a postcode lottery it’s time for free home care thousands of disabled and older people throughout the COVID pandemic have experienced social care cuts and increasing in care charging families and carers are struggling to make ends meet and pay the shopping bill others are being pushed into debt it is really it sorry it really is a choice for some people between heating than their home or eating or paying the care charges as sue explains who was a parent out of the blue in august their son got a bill for 4,500 pounds he’s 19 profoundly disabled he lives in a care home i have no idea how we can pay for it so if you’re interested that you would like to send um a similar letter to your MP please check out is it inclusion london where the letter is um is it there is a link to this letter from our website yes so it includes london.org.uk okay so um have you actually spoken to any parents or adults that have challenged the amounts they’re like that lady there with 4,500 pounds have you had in the response back where people have challenged and what happened yes so we’ve uh several people in this campaigning group that we have have challenged this and i’ve supported um uh several other people and i hope with our like templates and things um many more people did this but yes so what happens is usually when people challenge this amount local authority will do kind of a review and and sometimes they will drop this but that’s not always that doesn’t always happen it depends on how kind of stubborn they are and how how much they believe they’re right but they do have a right to charge so it’s the question of whether they told people in advance how they calculated the amount um and um you know whether usually it’s possible to reduce the amount uh but um it’s it’s difficult to just get rid of the charges all together that’s why we are calling for free social care so we don’t have to waste um everyone’s time on on this okay so um obviously making social care free is a big ask for the local government so it will require a lot of money what do you think so if i said to you svetlana here is a magic point and what would you do to make things improve for families in a cost effective way yes so i i we uh as i said we we believe that social care should be free and it should be funded through general taxation and maybe there is a question of whether we should uh raise taxes to pay for this but this is this we need to think what kind of society we we want to be um do we do we want a situation where people disable people and families who already struggling have to pay for very basic support everyone else just you know to do things that everyone else just does in their life do we do we want this kind of situation do we want a situation where uh again uh it it costs so if person if young person for example if family to choose to kind of uh keep what allow a young disabled person to leave with them continue living with them um they usually would have to support that person financially and and they would be penalized and of course they would have to support on just day-to-day basis if that young person went to some kind of services uh that would cost a lot a lot more but what’s happening now is that uh is people are kind of pushed to the post of some people choose not to have social care some people because they think they it’s more important for them to have money to buy food and and just uh yeah just meet other basic needs so they do it until they need deteriorate to the point when they need to go to hospital it becomes they don’t have choice anymore we don’t want to do this as a society it’s just not fair and it’s not it’s not right so um so that’s why we believe that social care should be free and and yes we need to have an honest debate whether we should raise tax or whether you know last year we we saw that government could find a lot of money out of somewhere that’s why everyone’s been talking about where are they finding all this money yeah but but this is the thing like if if they want to do something then there is money so maybe um there is a question to do we all need to ask ourselves what would that be that that should be a priority looking after people who need this um basic help to do very basic needs uh basic things in life we maybe we should kind of find money as a country to pay for that i just wanted to remind people of my petition um that’s still carrying on um it’s to do with um a question that’s at the back of many many many parents minds who will look after our children when we’re no longer around so if you’re interested in signing my petition it’s www.change.org forward slash Anna petition um actually speaking to a gentleman at the moment where um his mother and father have always looked after him at home and helped him with every sort of thing to do with paying bills or whatever it is that um you know that he’s asked support with and um his mom died and his dad now has dementia so now he just feels like he’s drowning um and there’s no one to help him um so he has signed my petition he’s actually put quite a few comments um if you look uh below uh in the comment section so he’s very very worried but it is a question at the back of everyone’s mind so um i think i’ve got something like 10 500 signatures so far so but i have been contacted by health and social care and they did arrange a meeting with me but um i couldn’t go to that particular day because um i was going to see my mum and my sister in the northeast i hadn’t seen them for 18 months because of lockdown and when i go to the northeast i take my son Angelo and we always stay at a farm because Angelo is quite active can’t really stay at my mum’s house because she’s got so many different um ornaments and whatever so it’s safer for him to be at the farm but they only had two days throughout the whole year that were available and those were the two days so i said that could we please rearrange the meeting so that would be happening um after september so i’ll keep your posters so just to remind you www.change.org forward slash and a petition and um as we know there’s many many parents that are looking after their sons and daughters their adult sons and daughters at home and obviously they’re worried about there isn’t a register you know to say who is looking after their um their loved ones at home so you know we really all i want is i want to have a discussion to talk about the best way to you know to alleviate this worry at the back of our minds what do you think about that um yes absolutely i i agree i think well i think first of all it’s um uh i mean maybe maybe you say anna if you don’t agree i think i think um uh families there should be enough support uh arranged already so that uh you’ll know what happens next because it shouldn’t be on families to to to do all this unless they choose to uh there’s a different story but that then then you still should be able to understand where this support will come from when um when when you’re not around and and obviously disabled adults that family support needs to need to kind of um understand that too and we believe so so when you talk about like some just concepts right there there’s um we believe that in right to independent living which basically means that that disabled people need to have whatever no matter what our needs are we need to have um support uh to live in the community like everybody else to choose where we want to live and with home um because still you know many people are forced to live in in in certain settings and you if you need quite uh if your needs are quite complex you might be you know placed in a home where you have shared care for example and and you don’t you have to you have to live with people who are there you don’t really have a right to choose to leave somewhere else um and and obviously all the support in the community services in the community must kind of think about needs of disabled people and become accessible that’s when we might have a um a better life and kind of more equal life uh um so i think i i i agree i think it’s really important campaign and but that’s why we need to get the social care right and that’s why i’m i’m actually shocked that they only had two days um offered two days to to meet with you because i think that’s also a big problem with how um policy is developed because they talk to everyone from you know care homes associations local authority agencies they don’t talk to people who needs a new social care and and we believe that should be at the center of everything so you know talk talk to people who for whom social care actually exist and ask them ask us what we want and then and then kind of talk to all the providers and and so and and so on to see how to make these things happen yeah maybe with something that we can work on together and support each other because obviously the end goal is the same for everybody um i also got um emailed over to me and spoke to um a gentleman um this uh was a press release and it’s institutionalizing parent care at lame and i’ve heard this quite a few times recently and my husband who works also um as a barrister so disabled children and their families are one of the most severely disadvantaged groups in the uk a major research report published on the 21st of july finds that most english children services authorities operate a one-size-fits-all approach to families regardless of whether it’s a parent care seeking support for a disabled child or a family where the evidence suggests that to be neglected or abused the effect of this approach is to create an institutional culture of parent blame the research cities sorry the research site is many comments made by parent carers parents who felt the process to be humiliating bullying devastating who likened it to the police turning up at your door and saying we’ve got a warrant to search your house in relation to the findings of the report the right honorable sir edward davey and p patron of the disability law service status i’m very concerned to hear of the continued problems with the way many children services departments in england are treating parents caring for disabled children a problem that was highlighted in the disability law service report last year the current report points to defective department for education guidance as a root cause of this problem which is leading to parents being blamed when they are asking for care for their disabled children instead of receiving the help and support they deserve i call upon the education secretary to address this issue as a matter of urgency so the reports key messages were that the national and local social care policies in england create a default position for those assessing disabled children that assumes parental failings this approach locates the problems associated with the child’s impairment in the family the national guidance that directs the process by which disabled children are assessed by english children services departments so it’s working together 2018 that’s the document is not fit for purpose and arguably unlawful and unlike the national guidance concerning the assessment of disabled adults working together again 2018 contains no requirement that those assessing the needs of disabled children have any disability related expertise skills or experience so they said that over 143 local authority assessment protocols identified for example 80 required the assessor to confirm if the child’s bedroom has been seen regardless of whether there was any evidence to suspect that the child was being neglected or abused 87 referred to the need of seeing and it just goes on and on and on so if you’re interested the report can be downloaded on cerebro.org.uk and it’s institutionalizing parent care blame just to remind you cerebro spelled c-e-r-e-b-r-a.org so it’s a download in institutionalizing parent care blame like my sons are now 28 and 31 and it’s never really ever changed i have heard so many parents throughout the years where they’ve been blamed and even been accused of having one chosen by proxy have you heard about this as well Svetlana yes absolutely i i i remember that well i i i’ve spent a good few years also doing some social care cases like complaints and and uh special educational needs appeals for uh for kind of disabled children and uh yeah absolutely i think that’s a that’s usually a default position is uh uh parents to blame and then and then you have to go through torturous process to uh um to dispute that yeah i’ve seen i’ve seen people in child protection proceedings because they’ve asked for support for their um you know severely disabled children and and could not provide it and it’s just uh um it’s just scandalous i think it’s yeah it’s just like unbelievable really um so can i ask so say if you were a parent and you um your son or your daughter was newly diagnosed or you might suspect that they might be on the autism spectrum or whatever disability you might suspect how now you know what you know with hindsight how would you approach it what tips and advice because i we do have parents who are listening in where they feel that their son or their daughter might be on the autism spectrum or they may have a disability they may have ADHD what tips and advice would you give to a parent starting out on the journey i think um well from what i’ve seen most important thing is probably try and see if you can find other parents in your local area who you could connect with and and there might be you know people who already been through process they because it’s quite uh also it differs from area to area although there is national guidance but you know and national law but it really differs so you could you could see uh how it works where you live and and what uh you know what people through who went through the system could um advise you but i think it’s important unfortunately i mean system should be working for us and and they should support uh people but we have to understand how it works and and like at least some there is a lot of um now lots of information about kind of rights for especially on uh disabled children i think council for disabled children has quite a lot of legal more kind of legal i suppose it’s it’s it’s more in a more human language but still information about rights yes to understand this understand where you stand and and i think as i said unfortunately there shouldn’t be illusions about the fact that someone suddenly everyone will kind of come and and and try and help the system unfortunately doesn’t work like that so it’s best to get understand your rights and then get tips from those who know how to uh work that system so it’s it does give you at least something that you yeah it’s i would say arm yourself with information it can be quite daunting um when you’re starting on the special educational needs and disability journey with your child um two good websites i would recommend would be ipsia spelled i-p-s-e-a and then s-o-n s-o-s-s-e-n um two good websites where they also have template letters on there to help you out you know when you start in the process um because obviously that can be quite a daunting process you know trying to get an ehcp or whatever it is that you’re trying to do and always try and get someone to help you um there are a lot of really good groups around and i know some of the groups say like charities um have been closed and because of uh what’s been going on with cuts but there are still quite a few groups even on social media on facebook there’s so many knowledgeable people out there and i’ve found that i’ve found so many people have been really helpful so i don’t know everything about everything and nobody does so if there’s something that i don’t know i might put out on social media sorry social media on facebook or whatever it is that twitter hey i need your help anybody got any experience in this and you know what people just come up and they will support you they’ll privately message you or however it is and just to remind you as well um i am on social media so if you want to follow me um i’m at anna kennedy one on twitter anna kennedy online on facebook anna kennedy oba on instagram and if you want to check out the charity website it’s www.anna kennedy online.com um lots of updated information on there and also about our events as you know we’re going to be celebrating 10 years of autumn’s got talent so we’re very excited about that that will be happening in october our very first uh roadshow will be in saint ives and that will be happening um in the first week of october middle of october we celebrate in 10 years and then as i spoke earlier in november we will be holding the autism hero awards where all of the finalists will come down to london and um have a special special evening so don’t forget the nominations are still open so if you’d like to nominate somebody that goes the extra mile for the autism community whether it’s a mom a dad a carer professional a business um please check out the charity website and you will see um the events page and you’ll see all the different categories we’d like if you’re a company and you’d like to sponsor one of the categories and present the award again all the information is on the charity website so you were worried about um us chatting for a whole hour and it’s just blown by for me and um just to remind people of inclusion london and the websites that you’re involved in and if you have any social media hand handles do you want to share those um so people want to listen in absolutely so our our main website is inclusion london.org.uk this is where um we post information about our campaigns um and um uh our social care charging campaign is there uh if you want to know about your rights we have a lot of information on the website which is called disabilityjustice.org.uk you can follow us on twitter it’s inclusion london all in one word inclusion and london capital letters um and we’re also as inclusion london on facebook and on instagram um we uh the campaign about social care charging has a hashtag on twitter which is scrap social care charging it’s all words with capital letters but all all together okay without spaces um so you can because there are other groups obviously nationally involved in this campaign so you can follow campaigns development through this so so we talked a little bit about what you do to relax so is there anything else what what types of things do you like to do you know i like i like walking i like i just generally like nature um and um and i like um just meeting and um you know having time with my friends i i do that a lot and actually i think in covid i also realized and and in some ways it’s a positive thing that came out of it i realized how how good my social networks are and how lucky and blessed i am with the friends um i’ve got um and that was you know just heartwarming and as much as everyone um had a little moan about zoom really what would we have done without zoom skype all of these um various different um modes of communication i think it sort of helped us ticking over don’t you that is true yes i’ve even mastered some board games over what type of board games do you play well we played like monopoly and played some um uh what’s it called alias though when you have to guess the words we had our christmas party with all the volunteers of mine that was just a bit weird but it was it was finding that i was lucky that um one of the um people that i knew through the dance world because my relaxation is dance i love to dance um you know it’s a great stress buster i like you i like to walk but one of my dance partners um from the past um robin he did a few dance steps as well on zoom so everyone was getting up dancing oh yeah it was a lot of fun so it’s been a real real pleasure talking to you svetlana and thank you so much for sharing your story for sharing about the campaign so don’t forget everyone please um check out inclusion london and get those letters sent off to your MPs um and also let’s keep our fingers crossed that the so how far do you think the campaign’s got to go very quickly to be able to say yeah we’re going to do something so who are you targeting so at the moment we’re targeting to front of health and and the treasury but we’re also targeting different local authorities and there’s been some successes in some areas already so if there’s a group of people who want to campaign in their local area then also get in touch with us okay so that’s something else then so if people want to campaign in their local area and with their local authorities get in contact with inclusion london and they will be able to help you and i’m sure it’d be very very pleased to to hear from you so i’m going to keep my fingers crossed for you and if i can do anything to share the information please tag me on social media and i will share it for you and again everybody um you know we’re coming out of lockdown here and um everybody’s i know a little bit of apprehensive but we’ll get there one day at a time keep going keep strong don’t give in one day at a time we will be there thank you very much and goodbye and best wishes to everyone thanks anna and goodbye everyone thank you bye