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The Genetic Rare Syndromes Observational Cohort (GenROC) study aims to improve our understanding of how rare genetic conditions affect the way children grow, their physical health and their development. Through actively involving parents as experts in their child's condition, the study seeks to gather valuable insights and ensure that family experiences shape future research and care strategies. You can find out more about the study and eligibility criteria via the Bristol University website. In this episode, Jillian Hastings Ward, patient advocate and former Chair of the Participant Panel at Genomics England, is joined by Dr Karen Low, a clinical geneticist leading the study at the University of Bristol, who shares insights into its objectives, the importance of a co-production approach with families, and the vital data being collected in the study to improve support for these children and their families. We'll also hear from Lindsay Randall, a parent who discusses the journey of receiving a rare diagnosis for her child, highlighting the critical need for more comprehensive information and community support. "If you join GenROC, that data will be used to develop a growth chart for your child essentially and their genetic condition, so I'm really excited about it because I feel like that's a very concrete definite given now for all the families in GenROC, which is just brilliant." You can download the transcript or read it below. Jillian: Welcome to Behind the Genes Lindsay: Historically, there's been a significant absence of patient voice in rare disease research and development, and knowing that's changing, I think that's really empowering for families and to know that professionals and industry are actually listening to our stories and unmet needs and really trying to understand, and that offers much greater impact on the care and treatments of patients in the future. Jillian: My name is Jillian Hastings-Ward. On today's episode I'm joined by Dr Karen Low, Consultant Clinical Geneticist and Chief Investigator for the General Cohort Study, and Lindsay Randall, Paediatric Practice Development Nurse and founder of Arthur's Quest, which is a UK registered, non-profit, raising awareness for the ultra-rare condition: SLC6A1, developmental and epileptic encephalopathy. Welcome to you both. Today we'll be discussing the GenROC study, which is aiming to understand more about the health, development and valuing the experiences of children with neurodevelopmental conditions. If you enjoy today's episode we'd love your support. Please like, share, and rate us on wherever you listen to your podcasts. Thank you both very much for joining us today, Karen and Lindsay. There's a lot we want to cover, but first of all it would be great just to put a little bit of context around the Gen-Roc study. Karen, can you tell us a bit about what the study is aiming to do, who is eligible and why do you want them? Karen:  Thank you. And thank you so much for having me today, Jillian. So, the GenROC study, first to just explain to people what ‘GenROC' stands for. GenROC stands for the Genetic Rare Syndromes Observational Cohort Study. Just to give you some context about the study, I'm a clinical geneticist and most of my clinical work focuses on paediatrics, so I see children in my clinics and the sort of children I see generally are children with rare genetic syndromes. The last five to ten years we've got much better at diagnosing children with these rare conditions and that's because testing has got so much better. We can now do whole genome sequencing and we can do that on the NHS, which is amazing, children can get their tests as part of their clinical care, so it means that a lot more children are being diagnosed with rare conditions, about 2,000 per year in the UK. And the thing about that is, that I see these children in my clinics and I give their families that diagnosis. But the problem is for so many of these ultra-rare conditions, like Lindsay's family has, we sit there and we say to the family, “Well, your child has got ‘X' condition,” and we give them some information from maybe one or two publications and linked to a leaflet and a Facebook group. And then we say, “But really we don't know that much about this condition.” And they say, “But what is it going to mean for them when they are growing up or when they are adults? Will they be able to finish school? Will they be able to work? What is it going to mean?” And I have to shrug my shoulders and go, “I'm not really sure.” And as a geneticist and as a doctor and as a mother really, I just felt that wasn't good enough, and I found it really frustrating and I know that the families that I work with, that I look after, also find it frustrating and I wanted to do better. And I also found it frustrating that for many genes, researchers would publish two or maybe three publications about these conditions, and then they would move on to the next novel gene, and actually, the journals are a bit like that as well, they like novel things, they like new conditions, they like the next gene. And so, it means that actually data doesn't always carry on being gathered in these rare conditions, and there are a lot of them. That was another thing, I sort of felt that these conditions were being done a disservice and that we needed to do better, so that's where the whole idea of the GenROC study came from was my drive and desire to improve things for families and actually to work with families to improve that, and that's where so this is a very highly co-produced study and right from the outset I've involved parents in telling me what they wanted to know and I've got a very, very active PPI group, full of parents of children who have got rare genetic conditions, and also I'm really lucky to have a young adult who has a genetic neurodevelopmental disorder herself and they all tell me about essentially what I should do and what I shouldn't do. They tell me when I'm not doing enough or when I need to do something differently, so it's very highly co-produced, they're highly involved all along the way. So, children with a confirmed genetic diagnosis in a list of eligible genes which people can see on our website if they Google GenROC University of Bristol, we've got a very easy checker for eligible genes, but they are essentially the most frequently diagnosed genes in rare neurodevelopmental disorders. And if their child is under 16, has a confirmed diagnosis and doesn't have any other genetic diagnoses then they can go into the GenROC study, that's essentially the eligibility criteria. Jillian: That's really interesting. It's very helpful to hear the background and I think as a parent of a child with a very rare disorder hearing that the clinicians also recognise this gap and the sort of pause that happens once you have your initial diagnosis, is really helpful and really encouraging. Lindsay, can we turn to you next and can you unpack a little bit about what it meant for you to get a rare diagnosis for your child and what point on your family journey was that compared to where you are now? Lindsay: I think to get a rare diagnosis for us was difficult and challenging and I think the first kind of challenge that any family has is actually being well-informed by a paediatrician who is also well-informed, and that's not always the case. That can affect the way we acknowledge or accept a diagnosis and how we also access support and how we understand what more we can do to make more connections. We did have genetic counselling offered, but I think there are families out there who don't get genetic counselling offered to help them understand the child's diagnosis, and then there's a heavy reliance on the internet, and as you said, there's a lack of information out of there. A lot of conditions are newly diagnosed or they're very complicated genes to work with, or as Karen said, they've had a couple of papers and people have moved on. And I think that does cause an immense feeling of isolation. We were diagnosed in 2018, our son, our first child, and exactly as Karen said, it was a fairly quick appointment of, “We don't really know much about this condition at the moment, there's a couple of papers. We know of 34 children in the world at the moment with your condition. Here's a Facebook group,” which we did join. And it is overwhelming to be given a diagnosis that's delivered with such little hope I guess, finding sources of information that's valid and robust is challenging, not everyone knows how to do that or has a skillset to conduct searches of academic research and I think that clinicians could definitely do better in also signposting the kind of umbrella charities like Unique and Contact and Swan and patient organisations, because I know that would have been definitely helpful for us as a family to be able to have opportunities to connect with others. Jillian: Thank you. Our diagnostic journey has been a bit a similar in that we were diagnosed through the NHS, and that at the time my son was the first person diagnosed with his disorder in the whole of the UK so it was really a big question mark, it was a question of our geneticist saying, “Here's the three PDF articles that we know exist in the world about this condition. Can you read them and tell us whether you think that sounds like him in order for us to be confirming our diagnosis?” I very much hear what you're saying there about feeling lost in the wilderness. And we too joined a Facebook group quite shortly after we got our diagnosis, and at the time my son was among the older ones or certainly as time has gone by he has been among the older children, so it can be really hard to know what might happen next. I think that now as Karen was saying we're getting much better at diagnosing people thanks to all the extra testing that's happening, that happens much earlier in life than it has done in the past, but I think then it still leaves a gap in parents' understanding because you don't necessarily know what the next ten years might look like for example. And so, I think making connections with people who are in that age bracket can be really important, but it's very hard to do. So Lindsay, I'm conscious that your professional training as a nurse must have stood you in quite good stead when you were faced with a barrage of medical literature shortly after your diagnosis, but I think one thing that every parent shares is the desire to do the best for their child and especially in this world of rare disorders. There's a huge amount of energy that comes through the community I think, faced with the need to try and self-start and build these networks and connections for themselves. Is that something that you've seen in your community as your experience? Lindsay: Yes, definitely. I think we're a growing community and over the years of course more and more children and young adults have been diagnosed with a few older adults coming through. It is very much a global networking effort and parent/patient organisations have been set up in many countries now by parents of children with children with SLC6A1. I definitely think that drive to become an expert in your child's condition is a long journey and one of continual learning and actually a lot of families simply don't have a capacity to take that on, I think often the medical and scientific jargon is difficult to understand and that makes it challenging to access. And as you said, as a paediatric nurse, I at least have some existing skills to understand healthcare to read the research and speak with medical and scientific professionals with some confidence, but in some ways, that has increased the burden I've placed on myself to become an expert for my children and other children and families who are not in the same position as me. It does require a lot of dedication and time, and that does have implications on families because it's time away from our children and from home, and from the remnants of our lives that we desperately try to cling onto, to not lose all sense of ourselves. It's not often spoken about but I do see the strain it places on the families, as well where there's a lot of separation and divorce sadly in the rare disease communities, and often that's as a result of one parent's drive to be the expert, which seems to cause one parent to fulfil more burden of care and that fosters some level of resentment or sense of loneliness towards the other one. Jillian: There are some scary statistics out there around familial breakdown in this context, and it is something which there are so many factors at play, but it definitely seems to be quite widely recognised and definitely a problem. In terms of the time that people have to spend on liaisons with the research community and the clinical community, that could bring us quite nicely back into a question for you, Karen, about what kind of information the GenROC study is looking to collect from families, can you tell us a bit more about that, please? Karen: Yes, absolutely. As I said before, I've been very conscious of the sort of lives that our families are living, and listening to Lindsay, her story is very reminiscent of so many others and yours, Jillian. So I know families have about a gazillion hospital appointments, their children are often also very, very ill intermittently or a lot of the time, then they've got school stuff to deal with or they've got EHC plans to try and fight for. It's more than a fulltime job in itself just being a parent of a child with a rare disease and it's hard work, so me asking them to do anything else is asking a lot. Luckily, I find, with the families I work with, who are universally wonderful I should add, that they are actually just really enthusiastic anyway about research for their child's condition, and that's because there isn't enough information out there, so it's relevant and important to them. But because they have no time at all, and any time they do give is their own personal time when they could be finally putting their feet up and watching something on TV, I have to make it as low effort as possible. The questionnaire is all online, using a user-friendly and interface as we've been able to develop. It's very user-friendly, it takes 10-15 minutes to complete; they can come and go from the questionnaire as well. We only ask for one time point at the beginning, which is all the sort of stuff that most parents will be able to tell you off the top of their head as well, so they don't have to go looking for loads of information, apart from a height and a weight. Then later down the line we're going to ask for a second questionnaire, it's in the process of being finalised and again that will be the same amount of time, very easy to do, online, at their convenience. It was co-produced with the PPI group, they've tested it for me, I've had really good feedback and I've asked parents who are in the study as well for feedback. Everyone tells me it's not too difficult or burdensome for them to do. The secondary questionnaire has been very much informed by conversations with the parents that I had as part of a nest of qualitative interview study in GenROC, and that has driven that secondary questionnaire quite differently to what I thought it might be when we first set up the GenROC study. At the beginning I thought it might just be: have things changed for your child? Can you give us a bit more clinical data? But actually I realised that probably I will still gather that information, but they probably won't have changed that much within the timespan in the study because it will only be a year or two after they completed the first questionnaire, and actually I realised that it would be much more useful to look at the impact of the genetic diagnosis, look at how they're accessing services within the NHS, what sorts of services they are accessing, Impact on the family and also looking at priorities for families. So families have talked to me about what their priorities are in rare disease, both in service provision but also in research, and I really am a very strong believer that we need to be given the limited funding, we need to be doing the research that matters the most to the families, not to the researchers. What do families actually want us to look into? Actually, do they want us to be looking into behaviour and what strategies work best for example, rather than something else very medical – what matters the most? And so that's going to be a specific question in that secondary questionnaire, really trying to identify what matters to families the most and then how that can be translated into clinical research in the future. So I'm really interested to see what's going to come out of that. Lindsay: I think that sounds brilliant, Karen because I think historically there's been a significant kind of absence of patient voice in rare disease research and development, and knowing that that's changing, I think that's really empowering for families and to know that professionals and industry are actually listening to our stories and unmet needs, and really trying to understand, and that offers a much greater impact on the care and treatments for patients in the future and certainly it makes endpoints more relevant to families as well. Jillian: What kind of outputs are you going to be looking at? Karen: The height and weight, the reason I'm asking for that is really because we are trying to work on growth charts for children and that's because growth charts for children with rare conditions don't exist by enlarge, there are a very, very tiny number of rare syndromes or conditions that have their own growth chart. The problem is that most children with these sort of rare conditions that we're talking about are either quite small or quite big, and the problem is that the paediatricians look at their growth and they go, “Oh well, you're much bigger or much smaller than other children your own age, what shall we do about that?” and particularly the little tiny ones it causes lots and lots of concern, so quite often these sort of growth parameters mean that the paediatricians do lots and lots of tests or put feeding tubes down, or add lots of calories, so it can be quite invasive and interventional actually that sort of growth parameter. But actually, sometimes that's because of the genetic condition and no matter how much feeding you do it's not going to change anything. The difficulty is we don't know that for certain, and actually we need good growth charts where paediatricians can make that call, and conversely sometimes a child actually does need investigating and the paediatrician puts it all down to their genetic condition, and that's why we need these growth charts. So GenROC is aiming to gather growth data from all these children and then we're going to work closely with Decipher, which is a website that was developed through the DDD study, which already holds lots of data from that study, so we're building on the power of that study and we're going to be generating growth charts for all of these genes. We've developed a new method for producing growth charts for rare conditions where you've got small numbers of patients – that was never possible before, so we've already proven now for four conditions we can, so the next stage is using all the GenROC data, putting it into Decipher and coding it in. So, if you join GenROC, that data will be used to develop a growth chart for your child essentially and their genetic condition, so I'm really excited about it because I feel like that's a very concrete definite given now for all the families in GenROC, which is just brilliant. Jillian: And is that something which will be shared with the families individually? Karen: Really great question. I hadn't planned on sharing the growth charts individually with the families, but that's something I can also go back to my PPI group and discuss with them about whether that's something people would want, and also I have a newsletter which goes out every three months to the families, so I can certainly ask that question actually directly. It's going to be widely available, the growth charts, we're going to make sure that they're accessible to paediatricians and clinicians etc. but in terms of output to the study, definitely the growth charts, we're also hoping to have other clinically useful outcomes depending on the different genes that come into the study. We essentially have a cohort of children with rare conditions, everyone puts everything down to a specific genetic condition but we know that there must be other factors at play that influence how children do. And this is a really unique thing we're trying to do with GenROC actually, looking at aside from that genetic variant, that alteration, what other factors are influencing how children are doing? Because some of those might be modifiable, you know, or some of them there could be things that could be put in place to help improve outcomes. So I'm quite excited about that as well, because that's quite new and novel and not really been thought about in this context before, so that will be an output. And the other output is something that I'm working on with Unique, which is the rare disease charity who has worked with us on GenROC from the start, and they are involved in our PPI as well and that is going to be looking at a template, calling it a report at the moment, it's in very early days, but something that parents will be able to hold, it's going to have lots of drop-down boxes that can be tailored and modified for individual patients and children, which will be a bit of a guide that they can give to clinicians, professionals, education, telling them about their condition but also telling them on an individualised basis about what needs to be looked for in the future. Because parents tell me they are fed up of having to tell everybody about their child's condition constantly, all the time, over and over again. So what the point of this output would be is to try and ease that burden a little bit. This is very early stages but we're going to involved parents all along the way. Jillian: And is that something which builds on the hospital passport idea that we've seen emerging around the world over the last few years where parents can start off telling their child's story on their own behalf? Karen: So, it's come from my own lived personal experience of being a mother of a child with autism and I haven't really spoken about that publicly before, so it's something I'm saying for the first time. I have a child who has autism and I have had to navigate things like a DLA application form. Jillian: That's Disability Living Allowance. Karen: Yes, exactly, which is a horrendous form, it's the most horrible form to complete, probably apart from an EHCP plan form but it's a horrible form to complete, it's quite upsetting as a parent and it's also got millions of boxes that you have to fill in. But one of the things that really, really helped me when I was completing that was a charity who had come up with lots of drop-downs that you could select from that might be applicable to your child to help you complete this form. And so it made me really think, “Well, could we do something similar for our children with genetic conditions but come up with lots of dropdown options that might apply to their child in all sorts of different areas?” And that was the inspiration, it was that, and doing the qualitative study that I've already done with parents of children in GenROC who were telling me about how fed up they were of having to constantly tell everybody about their child's condition over and over again. Jillian: Yes, that's probably very helpful to empower families to use standard terminology across the different families because my own son has epilepsy as part of his condition but actually trying to describe what his seizures look like I'm not sure I'm using the right words to fit the right boxes to fit them into the right categories with the neurologist. So that level of standardisation is something that we definitely need embedded into the system in order for more people to be able to use this data more effectively, so that sounds very helpful. Lindsay, coming back to you, what are you hoping to get out of this study, or what are you hoping this study will do on your behalf for the world? What motivated you to take part? Lindsay: I think I would like to see all of the aims of the study realised and for the study data to be used to inform the development of standards of care for a wide range of conditions, those included in the study. I think it would be great if that information, as Karen said, is available not only to the participants but also to children diagnosed with those conditions in the future and also it's an opportunity to consider themes that are identified across the disease groups as that can also help inform future research and look at investigations into the mechanisms of disease and where actually therapeutics could treat maybe more than one disease at a time and increase potential for basket trials and early access programmes – thank you to Dr Karen Low and her team for conducting the project because it included a comprehensive list of rare diseases, it really does give parents and patients an opportunity to have a voice and to contribute, which is empowering, and it gives them a little bit of autonomy as well over their direction that science and research goes to. Jillian: Fantastic, thank you. Karen, can you tell us a little bit about the timeframe for the study? I realise that we haven't really touched on that so far. Karen: Yes absolutely, I'm aiming to recruit 500 children as a total. We're open at 22 sites across the UK. Coinciding with this podcast actually we've opened a second door for recruitment, so the way we've recruited so far has been through clinical genetic sites, which is the way we've done these sorts of studies in the past, like the DDD study. The problem is that that relies on clinicians identifying eligible patients and clinicians are very, very busy in the NHS. I have worked closely with Unique who have been doing a lot of publicity and the genetic alliance have done publicity as well for the study, so that's been one way of identifying eligible participants. And also just parent power through social media has been amazing. The second way we're going to recruit, and this is going to happen very soon, is through Genomics England. So, we are going to trial a completely novel way of recruiting to research through Genomics England and that is for Genomics England to identify eligible participants for GenROC and this would have been through the 100,000 genome study and then they're going to send them invite letters, inviting them to take part. So that's the next phase of recruitment, I think if we have more than 500 then that will be great too, we'll be able to include those comers too, so that's not a problem. But we don't know whether this will work or not in terms of a way of recruiting to research, this is completely new for Genomics England and I'm a bit of a guinea pig if you like through the GenROC study, but I was quite willing to be that guinea pig because I thought it might increase access. So there will be some parents who have not been told about GenROC who have not heard about it, and who would love to take part, so I feel like this is the way of really widening that net as wide as possible. Jillian: I think that is a challenge isn't it, especially in rare disease – there's no point doing a public broadcast about an initiative because you're going to hit so few of the people that you're interested in, so actually how you access the community is the first challenge and I'm really pleased that Genomics England will be able to help you there because I think that is a very useful route through. I think it will probably be quite reassuring to quite a lot of families who were on the 100,000 Genomes Project who have got a diagnosis of one of the conditions that you're interested in, and are now perhaps subsequently in the fallow period after you have a diagnosis, wondering what happens next, so I can imagine it might be quite good news for some of them at least that they are now being invited to do something further. And the reason that you're building forward and you don't want people who are currently in the deciphering developmental disorders study is because you're already using their data through another source, is that correct? Karen: Exactly. So absolutely, I don't want anyone to feel that I don't want them, that's really not the case. I do want them but we have their data already from Decipher, so we're building on the DDD data already, so they're already contributing which is just the beauty of it, because that's what we should be doing in rare disease, we should be building on previous research because you know, you don't want to be trying to reinvent the wheel. Jillian: Agreed. So if someone is listening to this and has a child with a rare developmental disorder and they are interested in finding out more, what are the steps they need to take? Karen: If they Google Bristol University, GenROC, they'll come straight to the webpage and everything is on there. There's a link that they can sign up, the patient information leaflet's there, the eligible gene list is there, all the information they need, including our email address. Jillian: And is there an upper age limit for recruitment? Karen: Yes, children have to be under 16 and that's because once they get to 16 many of these conditions have associated learning difficulties, and it's just very much more complex to try and recruit young adults, young people, with learning difficulties and given it was a cohort study we felt it was going to be too difficult at the moment. Saying that, I have a huge interest actually in how these conditions present in adulthood, and I'm actually conducting a much smaller study at the moment in KBG syndrome, looking at adults, and so I hope that my future research career will allow me both to follow-up the children in GenROC, so that would be my vision but also to be able to take this forward for other adults with rare conditions, that's my aim and goal in the medium to long-term, so watch this space for that. Jillian: That sounds very exciting, thank you. Lindsay: I think I would like to say to Karen that I really like the sound of the idea of following patients up into young adulthood and adulthood, as you said, that is definitely a kind of an unknown area in lots of the rare diseases, especially in our condition, SLC6A1, it was mutation and the disease was only really discovered in 2015, so it is fairly new and we have very, very few young people and adults coming through and being diagnosed and connecting with the rest of the community. So, being able to understand the trajectory of conditions better and especially conditions where actually the presentation it's quite a spectrum, and so the long-term outcomes for people with SLC6A1 can look quite different, so it's good to collate more information about that I think. Karen: I think it's really important, so that's definitely where I'm looking to for the future with GenROC and more widely, I think it's just something I'm really interested in and has huge relevance for parents and families. Jillian: Well, I think we need to wrap up there but thank you both very much Dr Karen Low and Lindsay Randall for joining me today as we've been discussing the GenROC study, and how the study aims to improve understanding of how rare genetic syndromes affect the way children grow, their physical health, their development, but also how the patient and parent communities can work more closely with researchers to end up delivering something which is of a huge benefit to everybody. If you would like to hear more about this, please subscribe to ‘Behind the Genes' on your favourite podcast app. Thank you for listening. I've been your host, Jillian Hastings Ward. This podcast was edited by Bill Griffin at Ventoux Digital and produced by Naimah Callachand.

Hundreds of thousands of disabled pensioners will be unfairly impacted by the cut in Winter Fuel Payment, according to two leading charities who've spoken exclusively to Money Box. Disability Rights UK and Age UK have both told us that disabled pensioners often have higher energy bills because of medical needs and sharp cuts to the number of people receiving the payment will disproportionally affect them more than others. The government says it's committed to giving pensioners the dignity and security they deserve in retirement but says given the state of the public finances its inherited it's right that it targets support to those who need it most. It says its protecting disabled pensioners through extra disability benefits such as Attendance Allowance, Disability Living Allowance and Personal Independence Payments. And that over a million pensioners will also continue to receive the Winter Fuel Payment and those on the full new State Pension will receive over £400 boost through the triple lock. How might the Chancellor target Inheritance Tax in the upcoming Budget? Latest figures show that the government received a record £7.7 billion from IHT in the 12 months to July, up over 5% on a year before. And, what can be done to encourage self-employed people to pay into a pension? Presenter: Paul Lewis Reporter: Dan Whitworth Researchers: Catherine Lund and Jo Krasner Editor: Jess Quayle(First broadcast 12pm Saturday 14th September 2024)

For this special episode, Salise Dourmoush is joined in the studio by Tammy Hendry. Tammy discusses her experience raising her son, how DLA has been beneficial to her family & some top tips on applying for Disability Living Allowance. This podcast has been produced by Geldards LLP, music is 'Sunshine' by lemonmusicstudio. Want more from Geldards SEN? Be sure to follow our social media channels! All links here: https://linktr.ee/geldardssen Website: https://www.geldards.com/children-and-their-education/ Contact Tammy: tammyhendry@yahoo.co.uk Follow us on social media: @GeldardsSEN on Instagram, Facebook & X

Enjoying the podcast? Tell us what you think below and give us a rating. As always we'd love to hear your suggestions and feedback. Send us an email: podcast@pensionbee.com.   In this bonus episode of The Pension Confident Podcast, we have tips for new parents: from the benefits you could be eligible for, to the impact parenthood could have on your pension. Tune in to hear the best bits from episodes three and 19, as our host, Philippa Lamb and our expert panels discuss nesting, building emergency funds as a new parent and more. We hear from: CEO of Mumsnet, Justine Roberts CBE; Founder of Vestpod, Emilie Bellet; Money Advice Editor at The Telegraph, Sam Brodbeck; Senior Digital Editor at Money Week, Kalpana Fitzpatrick; PensionBee's CTO, Jonathan Lister Parsons; and PensionBee's CEO, Romi Savova.   Episode Breakdown: 00:37 The reality of Shared Parental Leave 02:22 Statutory rights for adoption 03:13 How to budget for a new baby 04:44 Anticipating early costs and childcare expenses 06:23 Exploring Tax-Free Childcare Allowance and Child Benefit 08:05 Parenthood and the Gender Pension Gap 09:31 Starting a conversation, before starting a family   Further reading and listening: To learn more about personal finance tips for new parents, check out these articles and podcasts from PensionBee: Episode transcript E19: Can you afford to have kids? With Justine Roberts CBE, Kalpana Fitzpatrick and Jonathan Lister Parsons E3: How do we tackle the gender pension gap? With Sam Brodbeck, Emilie Bellet and Romi Savova Pensionbee's research on fair sharing of childcare PensionBee Parental Leave Policy What I learned about mothers and their pensions from answering Mumsnet questions Why parents need to make a Child Benefit claim to protect their State Pension   Other useful resources: Mumsnet Statutory Maternity Pay and Leave (Gov.uk) Statutory Paternity Pay and Leave (Gov.uk) Statutory Adoption Pay and Leave (Gov.uk) Disability Living Allowance for children (Gov.uk) Tax-Free Childcare (Gov.uk) Child Benefit (Gov.uk) Boosting paternity leave has economic benefits (Pregnant Then Screwed) Average childcare costs (MoneyHelper) Transparency on parental pay (ABI)   Catch up on the latest news, read our transcripts or watch on YouTube: The Pension Confident Podcast The Pension Confident Podcast on YouTube   Follow PensionBee (@PensionBee) on X, Threads, Instagram, TikTok, Facebook and LinkedIn. Follow Mumsnet (@Mumsnet) on X, Instagram, Facebook, TikTok and LinkedIn. Follow Vestpod (@VestPod) on X, Instagram, TikTok, Facebook and LinkedIn. Follow Kalpana (@KalpanaFitzpatrick) on X, LinkedIn, Instagram and TikTok. Follow Sam (@sambrodbeck) on X and LinkedIn.

Enjoying the podcast? Then don't forget to rate and give us a review! As always we'd love to hear your suggestions and feedback. Send us an email: podcast@pensionbee.com    Having children can be one of the most wonderful and rewarding things you'll ever do, and it's impossible to put a price on all the joy that kids can bring you. However, there's no denying the impact that bringing up a family can have on your finances. Having a child can be a huge financial commitment. According to The Times, it'll take an average of nearly £203,000 to raise a child from birth to the age of 18. And it won't necessarily stop there, you might find yourself spending on your kids from before they're born until well into their adult lives. Add to that, the effects on your income that taking parental leave may bring - you might not know where to begin!  To talk through all the costs involved with having children and whether raising a family's currently affordable are our guests: CEO of Mumsnet; Justine Roberts CBE Financial Journalist and Senior Digital Editor at MoneyWeek; Kalpana Fitzpatrick PensionBee's CTO; Jonathan Lister Parsons.   Episode Breakdown:  02:12 Can you predict how much a baby will cost?  07:48 Statutory Maternity Pay 09:42 The problem with parental leave  11:56 Statutory Adoption Pay and Leave  12:46 The cost of childcare 14:58 Tax-Free Childcare Allowance 15:37 Child Benefit 20:37 Costs as your kids grow up 24:38 Paying for higher education. *We mention maternity pay in this episode and just wanted to be absolutely clear with the figures: Statutory Maternity Pay's paid up to 39 weeks You get 90% of your average weekly earnings for the first six weeks You get the lower of £172.48 or 90% of your average weekly earnings for the following 33 weeks.  *We also accidentally overstated the amount of Shared Parental Leave that you may be entitled to. We said you'd get a year, but it's actually up to 50 weeks of leave between parents.  *We state that the UK has the highest childcare costs in the Organisation for Economic Co-operation and Development (OECD). Though this has been true as recently as 2022, the UK currently ranks third. However, this number's ever changing.    Further reading: For more help getting financially prepared for raising a family, check out these resources from PensionBee. Episode 19 transcript Can you afford to have a baby? Pensionbee's research on fair sharing of childcare PensionBee Parental Leave Policy What I learned about mothers and their pensions from answering Mumsnet questions How to financially plan for a baby How stay at home mums can build a decent pension What happens to your pension during maternity leave? Finances for freelancers on maternity leave How can I get my pension back on track after taking time off to have children? Why parents need to make a Child Benefit claim to protect their State Pension Other useful resources:  Mumsnet Statutory Maternity Pay and Leave (Gov.uk) Statutory Paternity Pay and Leave (Gov.uk) Statutory Adoption Pay and Leave (Gov.uk) Disability Living Allowance for children (Gov.uk) Tax-Free Childcare (Gov.uk) Child Benefit (Gov.uk) Boosting paternity leave has economic benefits (Pregnant Then Screwed) Average childcare costs (MoneyHelper) Transparency on parental pay (ABI)   Catch up on the latest news, read our transcripts or watch on YouTube: The Pension Confident Podcast The Pension Confident Podcast on YouTube Follow @PensionBee on X, Instagram, TikTok, Facebook, Threads and LinkedIn. Follow @Mumsnet on X, Instagram, Facebook, TikTok and LinkedIn Follow @KalpanaFitzpatrick on LinkedIn, X, Instagram and TikTok

In this episode of Taralets Talk, Navy veteran Kevin Perez returns as a guest for the second time to share his experience and knowledge about pain management in the US for the disabled. He shared his views on what you need to do when diagnosed with chronic pain, the professional care or help he received, and how to support those suffering from chronic pain. Episode highlights:What spinal stenosis is and what can worsen it.How he discovered he suffers from spinal stenosis.Pain and debilitating effects of chronic pain in someone's life.Medical treatments he received and managing his pain.Dealing with depression and his forced retirement from the Navy.Biggest misconception about people like him with disability.Knowing when it's necessary to get professional help for your mental health. How he came out of a dark place and changed his perspective to ease into his new normal. Link to find out more about our guest here: LinkedIn | Short Bio Guest Quotes:"Most of it mentally accepting what I can't do anymore. And more like looking at what I can do."  "You have to get out of the thought process of, ‘I can't do this anymore.'"  Have questions, comments, or concerns? We'd love to hear from you. Subscribe:  Apple Podcasts | Google Podcasts | Spotify | Stitcher | Audible | Amazon Music | Goodpods | iHeartRADIO |  

Listen to our family finances adviser Derek explain what the rules are around payment of Disability Living Allowance - and Child Disability Payment in Scotland - when your child goes into residential accommodation. Find out more: contact.org.uk/benefits-changes-in-circumstances

From 22 November 2021, children under the age of 16 in Scotland can no longer make a new claim for Disability Living Allowance (DLA) and instead need to make a claim for the new benefit Child Disability Payment. But what about children in Scotland who are already getting DLA? What's going to happen to them? Our Family Finances parent adviser, Derek, explains.

22nd November 2021 will see the introduction of a new Child Disability Payment system in Scotland replacing Disability Living Allowance for young people which could mean an increase in benefits for some young people. The roll out from DLA to the new Child Disability Payment is already underway and will continue over the next few months. RNIB Connect Radio's Toby Davey caught up with Dominic Milne RNIB Legal Rights Officer to find out more about the new payment system and how it might affect young blind and partially sighted people in Scotland and their families and carers. Young people, their families and carers don't need to do anything as they will be contacted by Social Security Scotland regarding the changes and move to the new Child Disability Payment system. If you have any concerns about the changes in Scotland to the new Child Disability Payment you can contact Social Security Scotland on 0800 181 2222 or you can contact RNIB's Legal Rights Service for help and advice on the new payment system or any questions you may have relating to benefits through the RNIB Helpline on 0303 123 9999. More information and advice about benefits can also be found on the RNIB website - https://www.rnib.org.uk/advice/money-benefits-finance (Image shows RNIB logo. 'RNIB' written in black capital letters over a white background and underlined with a bold pink line, with the words 'See differently' underneath)

Universal Credit (UC) is now the main way of accessing government support for mothers whose income is low or non-existent.  Patricia Exley, a Citizens Advice manager, runs through the type of support available through UC, how to apply for it, and what the work commitments may be for those on UC. We also cover everything else I can think of to ask about, including the Disability Living Allowance for children.  To calculate how much you could get please see Entitledto or Turn2Us.  For more info on claiming UC see Universal Credit service or call the DWP on 0800 328 5644.  For help in claiming UC see Citizens Advice The general advice line is 0800 144 8848 for any topic.   Thanks as always to James Ede of Be Heard for production of the podcast.

What does your insurance cover you for? Paul Hatty of the British Insurers Brokers Association discusses home insurance, and hears from one listener who struggled to get insurance for his holiday home in the Republic of Ireland. Will your travel insurance cover you? Paul also looks at insurance cover for holidaying in green or amber listed destinations. Plus confusion over green cards; what do NI drivers require? Rachel Jeffers of the Law Centre, looks at one listener's query on disability car tax; the listener, had to insure her disability vehicle as a Light Goods Vehicle, as she doesn't qualify for Disability Living Allowance. Robert McLaughlin of the Department for Environment Food and Rural Affairs Environmental Policy, discusses a new recycling incentive to be launched in Northern Ireland. Plus, a new BBC scheme to help businesses give their old laptops and computers to school children. Email: OnYourBehalf@bbc.co.uk

Many people on Disability Living Allowance are rejected when they are assessed for the newer benefit Personal Independence Payment (PIP). Paul Lewis hears about some of the experiences of claiming PIP and discusses with Daphne Hall, vice chair of the National Association of Welfare Rights Advisers and Dr Jim McCormick, chair of the Disability and Carers Benefits Advisory Group. More than 100,000 couples in the UK divorce each year — around 40% of marriages. It is over 20 years since divorcing couples could bring the value of pensions into the pot when they share their assets. But only one out of every eight cases take pensions into account as part of the financial settlement. So why is pension sharing at divorce forgotten in so many cases? Paul Lewis speaks to Jo Edwards, head of Family Law at Forsters. Up to a quarter of a million people over the age of 70 get no state pension - but around half of them could. Former pensions minister Steve Webb explains all. It’s nearly three months since we first reported that people were suffering weeks of delays when they try to access their pension funds invested with Prudential. Since then those weeks of delays have turned into months… and still the problems continue. Dan Whitworth investigates. Researcher: Anita Langary Production co-ordinator: Janet Staples Reporter: Dan Whitworth Producer: Ben Carter Editor: Alex Lewis

From 1 September 2020, children in Scotland will not be expected to move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) until age 18. Listen to our benefits expert Derek Sinclair explain what these new rules mean for families.

The Disability Download Special episode – Frances Ryan  [Music intro] Cathy Lynch Hello and welcome to The Disability Download. The Disability Download is brought to you by disability charity Leonard Cheshire. I'm Cathy Lynch. Erin O'Reilly And I'm Erin O'Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability. This month we're all about the Paralympics.  This month we're giving you a very special episode of The Disability Download, we actually recorded this last summer and what it is, is a very special interview with award-winning journalist Frances Ryan. Cathy actually caught up with her last year, right before her recent book was published. The book is called Crippled: austerity and the demonization of disabled people. We thought it was quite timely to share the interview with you especially given the recent news of the tragic story of Errol Graham who actually died of starvation after having his benefits cut by the DWP (Department for Work and Pensions) so that's being investigated at the moment but Frances' book really shows the impact of austerity over recent years and how it's affecting disabled people.  [Music fades] Cathy Lynch Yeah was a really interesting conversation actually, I think as well from reading the book, it is quite a difficult read in the sense that it is very emotional in at points, you know, I think it's really important to note that it could that having your benefits cut could happen to anyone. It makes the figures, a reality that you see in the news every day. So yeah, give it a listen.  Cathy LynchFrancis. Could you explain to our listeners what the book is about and why you wrote it.  Francis Ryan Yeah, absolutely, thank you for having me. So yeah really the book came about from the fact that I've been working on disability and really the impact of government cuts on disabled people support for the last sort of seven years now, and it just really struck me that this is an issue that has just been building and building, as we've seen billions of pounds pulled from support that disabled people rely on by the way of social care or housing or benefits, and they've actually been covered a little bit in some really great books on for example austerity and it's been absolutely covered to a certain extent in newspapers. It's never really been an issue that's I think really hit that sort of turning point, that critical moment where it's just really gained public attention, and I thought it was just a really crucial issue that needed to be looked at in detail, and that is really where I started, and quickly became sort of a, I think my aim was to make excellent conversation about Britain's relationship with disability; how we treat disabled people, what attitudes to disabled people are in modern Britain and how that translates to the sort of policies that governments are able to bring in.  Cathy Lynch So in your book you focus on the austerity years and disability. You talk about the time before 2010; what was it like for you growing up, and what was it like pre-2010? Francis Ryan Yeah, I think that was a really important part of what I was trying to get across, that sense that society is sort of dependent on what governments are in, and what point of progress you're in as a society treat certain groups differently. So disabled people have been, you know, obviously campaigning through the decades to win really basic fundamental rights; that's their right to live at home independently rather than being in a care home, or the right to be employed or get on public transport. When I was growing up in the 1990's, I thought that was really fortunate time to be born a disabled person because we've sort of had those key civil rights moments if you like, where disabled campaigners had been fighting for decades to get these basic rights and we had things like the Disability Discriminations Act come in, Disability Living Allowance benefit that helps pay for the extra costs of disability had been introduced. So it felt quite a positive time actually, to be a disabled person, and have opportunities that the previous generations hadn't, and I think that's why for a lot of people, the post-2010 era, so when these austerity steps first began to sort of dismantle this support, that was the really devastating part. It was the fact that people who fought these rights of people's equality, really it's not perfect but it got to a point where a lot of people felt actually we're the generation of disabled people that are able to enjoy much more opportunity and equality than we've ever had before. But now due to this cost cutting, we're seeing so many disabled people see these rights roll back in a way that we never really expected - I think that is the really crucial bit that those rights are not permanent. We're constantly having to fight for them if you like, and right now I think is a really crucial time for disabled people in Britain, because we're very much having these rights feel like they're underset again. Cathy Lynch Something that struck me from reading the first pages of the book, you say that you've outlined this is a national scandal - do you think that when we look back at this point in history we're going to be ashamed; do you think the government should be held accountable?  Francis Ryan I think there is a real problem when it comes to pointing out problems and then ministers being held accountable and changing them. I think that's one of the crucial issues of why things have been so incredibly difficult for disabled people, it's that the policies have been brought in, in the first place that are damaging. So for example it is quite predictable, but when you tighten eligibility for disability benefits for example that will result in a lot of people who desperately need these benefits no longer having it. If you bring in you know 6 billion pounds worth of cuts in social care that's going to quite obviously result in disabled people not being able to get dressed or washed in the morning. That was quite obvious, and yet the policies are brought in regardless. When we see, as we have done, MP enquiries, charities, disabled-led organizations doing this research which shows very clearly the devastating impact of these policies that still 99 times out of a hundred Ministers do absolutely nothing about it. I think that's the devastating bit for a lot of people that actually everyone is really aware increasingly of what's happening. I hope the book is a record of what's happening but we need to reach a point where it's not just about saying "this is happening", It's about saying actually we need to reach a point where Ministers are pressured to actually do something about it.  Cathy Lynch Do you discuss in the book what we as a society can do to improve and how we can tackle these issues.  Francis Ryan Yes, absolutely. It was really important to me with the book to have that sort of sense of what we can do, to make things better. I think disabled people and non-disabled people I think now in Britain with politics can feel quite intense and hopeless; there's so much going on, isn't there? Whether it's Brexit, austerity or the rise of the far right, there's so many issues that make you feel this is this is a really difficult time for lot of people and you need to not sanitize what's happening at the same time you need a sense of hope, and a sense that actually things don't have to be this way if you do things differently the lives of disabled people can be so much better than they are for a lot of people now. So like you say towards end of the book I talk about just sort of common sense things society can do to make to make life better for disabled people. So for example, I talk about the importance of representation - I really think that even though they seem not related, something like how many disabled people you have in positions of power like in Parliament, in the media, or just the people that you see whether or not you go to school with a disabled person, whether you see them in the workplace. That level of exclusion versus representation and inclusion I think is really important because if you live in a society where you don't really see disabled people in everyday life it becomes really easy to get these  cultural myths around us that we're not like normal people, that we don't have the same interests and needs and wants and dreams and those cultural attitudes make it really easy to bring in measures like cuts to social care that you just wouldn't do for other people. If you believe that a disabled person doesn't go to the pub, does not have relationships and doesn't want a career then it becomes really easy to cut that personal assistance, so they have to stay in the house 24/7. I think for me stuff like representation is really important. I think we really connect, I think that is a really big issue we need to talk about the fact that, for a lot of people, they still don't really come across disabled people in everyday life, or at least they don't think they have, they're not aware of it, there's still a real sort of awkwardness, a lack of interaction with disabled people in Britain I think all about really ties into the way that we see disabled people treated in everyday life. Cathy Lynch Do you think the discussion of disability issues is shifting and changing in the media?  Francis Ryan I think that we've had, over the last decade, we've had I think a lot of the same people that I speak to have become quite fearful actually of some of the coverage that they've received and there's been research that shows this - the negative portrayal of disabled people has increased in the press post-2010. You know things like referring to people who are too sick to work as 'work shy' or 'scroungers', and lots of research has shown that's increased, and research has shown that things like disability hate crime - people you are talking about in the public in the first place, it shouldn't be a case of non-disabled people talking about disabled people constantly. Disabled people should be the front and center of our own reporting.  Cathy Lynch Reading the stories in the book, were there any stories that you were surprised by, or on a scale that you didn't imagine.  Francis Ryan Yeah I think I think going into it I was aware of the scale of the issue because I've been reading the research for a good five years at that point, and I was just talking to people, the amount of emails and messages that I get from disabled people I think I got the impression that this was not a handful of cases. You know this is hundreds of thousands if not millions of people who are being affected by issues like disability benefit cuts and social care cuts. But at the same time, I think hopefully that's what the book gets across. Sometimes those sort of reports can seem quite cold and abstract. You know if you read Leonard Cheshire did research talking about there's one million disabled people without the social care they need in Britain. That figure sounds horrendous but actually when you talk to people who actually directly experience it that you that you really get an impression of just what that means to people on a day to day basis. I spoke to one woman called Rachel who is a wheelchair user. She was living independently in a bungalow in the New Forest and she was doing that with the help of a team of personal assistants. Over 2012 to 2016, she lost the person helped her get dressed in the morning, the person that help cook her meals, the person that cleaned her bungalow, the person that helped her get to bed at night. It was just cut cut cut, and in the end she has no social care at all, and that struck me despite knowing how great this is for a lot of people. The idea that a wheelchair user could be left as she was which was malnourished because she had no one to cook the meals anymore, and on her bad days she slept in her wheelchair, she told me because she did not the energy to lift yourself back into bed, and the person used to help her from the council has been cut and that, absolutely, those types of stories I think, are just absolutely devastating even if you know how bad it is. I think it's all just it makes me feel it's reached a point for a lot of people where things are happening that you don't think you ever imagine would actually happen in a well-funded, wealthy nation and I think you should be shocked by that - I should be shocked by that - the reader I hope in a positive way shocked by it, because unless we talk about it, unless we sort of say to each other this is completely inhumane what can we do about that, then these things don't change, do they?  Cathy Lynch Another point that we found from the book was your take on the benevolent othering of disabled people and what you had to say about the phrase "most vulnerable people”; could you explain to our listeners what the issue is? Francis Ryan, I think this was in a really interesting thing for me. I think you hear this idiom that we will always, as a country, protect the most vulnerable, and when you say vulnerable generally people mean disabled people is sort of the code word they're using. I think the sentiment behind it is is it positive isn't it? The idea that as a society we should take care of people we should support people who are most in need of support, who can't necessarily live their life safely and comfortably without support from other people. But I think actually when you break it down the idea of disabled people being inherently vulnerable is is part of the problem; I think for one it perpetuates the idea that disabled people are sort of inherently different - that we are fragile - that we are weak - that we are child like, when actually, absolutely, many of us need support in a way that other people don't. But I don't feel vulnerable on a day to day basis. I'm just a normal person who needs support to do things. The idea that we are vunerable I think perpetuates that sense as you say that 'othering', I think on a second level it suggests that disabled people are vulnerable because we're disabled but actually the only reason that we're vulnerable or we become vulnerable is when the support that we need to live a safe and dignified life is removed from us, to talk about Rachael with the social care - she is absolutely vulnerable now because she is malnourished because no one is helping her cook meals. She is vulnerable because she can't go to bed at night and sleep. She wasn't vulnerable before. She's not vulnerable because she's a wheelchair user. She's vulnerable because society has chosen to remove her social care from her. I think that's the really important bit for me to talk about, that disability is not inherently tragic and miserable and negative. We can live amazing lives but we need sometimes that support in order to do that, and that's the issue - if society gives us the adequate support our lives are nothing like a life of tregedy and vunerability.  Cathy Lynch After writing this book and looking forward, where do you think we'll be in ten years time?  Francis Ryan Well there's a question...! I think British politics is in a position, where we could make predictions but I think they would easily be completely transformed in a matter of months. I think this feels a bit for a lot of people whether you are disabled or not that Britain is in a bit of a turning point, I think. I say at the end of the book that it feels a bit like 'decision time' for society of what we want to do, what we want to be like, how we want to treat people like disabled people and other marginalized groups like migrants - are we going to be a society that turns in on ourselves and becomes mean spirited, are we going to be a society that actually funds our public services properly again. These sort of questions I think have never been more vital to address. I think we're at a point where we've had this decade of extreme cost cutting that has really gutted these services that a lot of us have relied on for years. Obviously the change of Brexit is going to be transformative for society again, for services disabled people rely on. I think it's very much a turning point of 'we can do better than this'. We can we can stop the roll back of disability rights, we can reinvigorate the welfare state, or we can continue down this path. There's only going to further reduce the rights and opportunities of disabled people. I think it's a turning point and I really hope these sort of conversations help us to transform this situation into something better - we have that potential, it does not to be like this. We just need to get there.  Cathy Lynch What are the main things journalists and charities and other organizations in the disability sector do you think should do in the meantime?  Francis Ryan I think that I think the number of disabled organizations and also charities are doing incredible work. I think it's easy when you look at the scale of these problems to fear as I say quite downhearted about it, and scared of what happening. I think it's really important to look at the incredible campaigns that were already happening, in the book I talk a lot about the things disabled campaigners are doing for example, organizations like disabled people against cuts, that they're working in protesting and highlighting the way that the closure of the Independent Living Fund and the impact that that had on and continues to have on disabled people. If we look at parents of disabled children who are currently campaigning to stop closures of respite centers that their children rely on and or specialist teacher assistance to help them and have their children in mainstream education - those campaigns and their battles are being fought and won in some cases all over the country as we speak. I think that's the really crucial bit isn't it - is to look in your local community to what the issues are and what we can do to try and help us maintain these little sides of support. I think that that there's some incredible work that we just need to highlight some more maybe - they don't necessarily didn't get the good stuff and the passion and their campaigns don't necessarily get the front pages like a devastating story would do, but social media for example I think it's a great way for a lot of disabled people to connect with one another who are not only going through these difficulties but also to look at these campaigns that you can get involved in whether it's education or social care or benefits or access to venues the same opportunity particularly online to get involved in your local networks on the national networks. It gives me hope, for sure, to see the way that disabled people can work together and get really a better result, it's a cliche but we do a lot better when we're all fighting together than just by ourselves, and I think that gives a sense of hope and solidarity for what can be stopped, and what can be changed, if you work together in that way. Cathy Lynch So now your book is done. What's next for you?  Francis Ryan A big sleep! I do love a nap! It's strange, it's about two years I think I've been working on that, so that's a long time. I think it's it's going to be a case of hoping that this these sort of stories that are covered in this book gets as much attention as we can, I really hope that the stories that people have so generously and really courageously told me in intimate detail in these books get the sort of reception that I hope these issues can finally get. To me going forward, continue to working with The Guardian and the great team there, people like Patrick Butler, who do incredible work in highlighting what is happening to disabled people, I think there are so many issues that you just can't not cover. I think issues like social care is going to be just an incredible issue over the next couple of years increasingly. Just today, I read an article that told me that people who are over the age of 65, the proposal was that they would get their personal care for free and not once in the news article did it mention that disabled people exist, that disabled people under the age of 65. For me personally just as social care continues to be debated and finally we get the the paper from the government hopefully to just continually bang the drum that social care actually is relied on by disabled people as well as older people and how we can make disabled people get the support we need as well as older people, that will be for me personally one really important issue over the next year.  Cathy Lynch Fantastic. Thank you so much Francis.  Erin O'Reilly So that was a really interesting chat there with Francis and covering obviously essential topics which are very timely in the current landscape, so Francis' book is available to buy from all good bookshops and available on Amazon as well. As always, we'll put relevant links in our show notes so check that out if you're interested in giving it a read.  Cathy Lynch And we'd love to know what you think of The Disability Download, email us at disabilitydownload@leonardcheshire.org and please remember to like, share and subscribe.  Cathy Lynch I'm Cathy Lynch  Erin O'Reilly and Erin O'Reilly Both And this has been The Disability Download.  Music plays 

Our parent adviser Mia explains why claiming Disability Living Allowance can be a gateway onto more financial help.

Listen to Derek, welfare rights expert from Contact's helpline, explains Disability Living Allowance (DLA) and dispels common myths on eligibility. To find out more about DLA, visit contact.org.uk/dla

One of the things that Cat is - without a doubt - is fiercely independent. And now that independence may be limited depending on what happens with her PIP assessment. Some years ago, the government decided to replace the Disability Living Allowance (DLA) with a Personal Independence Payment (PIP).  It's introduction was staggered and everyone who wants to continue receiving this benefit has to apply and go for an assessment. For Cat, that time has come - the form has gone in, she's got her assessment date (which should have taken place by the time you listen to this). Cat talks openly about what it means to her and the potential impact if she loses her Motability allowance - which is key in maintaining her independence. She also talks about the upcoming Women in Tech Cyrmu and we hear a clip of her and her husband Dan having a meet & greet with a lovely deer who decided to join them in the car (well just it's head!) while on a day at Longleat We hear her and her husband Dan enjoying an in car visit from Bambi (aka a deer) on a day out at Longleat.

Cat spoke to Debra Levitt a few days after 200th milestone event at Cardiff Bay.  She talks about her worries before hand, the fun of the walk itself and how it felt after the walk. The combination of almost thinking that she'd celebrated the end rather than a mid-point and the realisation of how much further she still has to go. Cat talks of how, knowing how much it has taken for her to reach this point, makes it almost more daunting to tackle the remaining 165 miles - but emphasises that she will do it. Cat talks about what keeps her going week by week, how hers is not a structured approach and that the flexibility works well for her. The Shine charity and Cat have spoken and are going to arrange another event for her 300th mile! Cat looks ahead to her final week where she'll be away and what she's planning for that, touch briefly on her love of Canada (shared by Debra!) Ever since she was evaluated at the age of 16, Cat has received the Disability Living Allowance. It enables her to keep her independence and forms part of her plans. With the government making changes to the benefits from all angles, the DLA is being replaced by the PIP. Cat talks about her initial reaction, and then trying to step back and assess the best option for her and her husband - emotionally, financially and practically. Cat looks forward to #Cat300 and #Cat365 Contact Cat Just Giving Page: https://www.justgiving.com/fundraising/Catrin-Atkins Instagram: www.instagram.com/catsatkins Twitter:  www.twitter.com/catrin1979 Shine Charity: https://www.shinecharity.org.uk/wales Facebook (blog): https://www.facebook.com/FiMe-Spina-Bifida-204116193765852/ Facebook (Women in Tech Cymru): https://www.facebook.com/WomenInTechCymru/ Business: www.sonixsoftware.com LinkedIn: https://uk.linkedin.com/in/catrin-atkins-a0786a13 Contact Debra Email: debra.levitt@bridgeroadconsultants.com Twitter: www.twitter.com/bridgeroadcons Instagram: www.instagram.com/bridgeroadconsultants Facebook: www.facebook.com/bridgeroadconsultants Web: www.bridgeroadconsultants.com LinkedIn: linkedin.com/in/levitt.debra

As part of our Counting the Costs campaign to stop families going without the basics, we're challenging myths around eligibility for Disability Living Allowance (DLA). Listen to Derek, welfare rights expert from our helpline explain DLA and dispel common myths on eligibility. If you'd like advice call our free helpline on 0808 808 3555 (Mon-Fri 9:30am-5pm) and visit our website http://www.cafamily.org.uk/know-your-rights/benefits-and-tax-credits/disability-living-allowance/

Transcript:On Friday November the 11th several of the right wing newspapers were running dubious storiesabout DLA; varying from slightly massaging the facts to suit their agenda to out and out bollocks.In response writer Lucy Glennon asked people on Twitter to use the hashtag #myDLA to tell theirstories about claiming DLA and how they spend it. Inspired by this I asked WtB readers to submitshort audio files with their DLA stories. This is what people had to say:Person 1: I get DLA as I am bedbound with ME. My DLA review wasrefused on paperwork and then it was stopped completely when I had amedical because apparently, I don't look disabled. It was reinstatedat the highest rates after my MP became involved. The whole thing took18 months to get sorted out and it shouldn't take an MP's involvementto get the basic rate of support in this country. Daily Mail articlesare just full of lies and hate and I just don't understand why? Whatdid we do wrong? We've done nothing wrong, it's just so pointless.Person 2: I have an invisable illness. It took me two years, a medicalassessment, two appeals and a tribunal to get my DLA. It was highlydamaging to my health. Because my illness is also variable, I let myDLA lapse when my health improved for a while and now I've relapsed, Ihave to go through it all again.Person 3: My DLA is how I buy equipment. It pays for the electricitythat keeps my ventilator powered. It pays for the electricity thatkeeps my feeding equipment powered. It pays for my electricwheelchair, without which I would be completely unable to mobilise andit pays for other smaller things like incontinence pads or specialcutlery, plates - all the things you can't really get from the NHS.Really, without my Disability Living Allowance, I wouldn't be able tosurvive and I would die without my ventilator.Martyn: Hello, my name is Martyn Sibley. I'm 28 years old. I've beendisabled since birth due to a genetic condition called Spinal MuscularAtrophy. I just wanted to take a little moment to share with you#myDLA, the way I use Disability Living Allowance. Due to mydisability, I qualify for both the higher rate of care and the higherrate of mobility component of the benefit. Obviously the overall pointof the benefit is that it recognises the additional costs that resultfrom being disabled, living in a society that exists at the moment.The care part of my component enables me to employ full time careassistants to enable me with getting out of bed, general personalcare, domestic chores and also getting out of the house and sociallybeing active in the community. The mobility part of my DLA is alsoenabling me to drive my adaptive car, without which I would find itvery very difficult if not impossible to get anywhere beyond thedistance in a wheelchair. And because I have that adaptive vehicle, Iam able to drive myself out for work, which means I am contributing tothe economy, and also I'm able to get out and about and spend themoney I have earnt, back into the shops and cinemas and bars, again,putting back into our economy too. So I hope that illustrates thepicture that DLA enables me to live a very full and independent life.And if you want to look at it from a very economical perspective assome of the right wing press seem to want to do today, I am actuallyfar more valuable to our society and our economy when I am able to beout there, living a great life, working and spending my hard-earnedmoney. Thank you very much.Person 4: Without my DLA, I wouldn't have personal assistants. I wouldbe stuck inside all of the time. I wouldn't be able to eat. I wouldn'tbe able to get out of bed. I wouldn't be able to move around my house,go to the toilet or enpty my catheter bag. Without my DLA I would bemoved to a nursing home. I'm 25 years old and that would be the end ofmy life.Jack: Hello, my name is Jack and my DLA supplies us with a reliablecar and helps us towards essential costs such as energy, special dietfoods, medication and travel to appointments and many many morethings. Without my DLA I would be less independent and not more. Thiswould force me to be more reliant upon my partner and the social caresystem. It took me six weeks of all my useful hours to fill out theapplication form. That is 36 hours and resulted in a form includingevidence that was hundreds of pages long. I would hardly call that asimple form.Louise: My name's Louise and I'm a working claimant for DisabilityLiving Allowance. I receive middle rate care and lower rate mobility.I have epilepsy which means I don't have a driving license any moreand haven't done for the last 15 years because my seizures areuncontrolled. I use the mobility allowance mainly for taxis because Iam a working journalist, I am out and about a lot and sometimes it'squite difficult for me to get around. Sometimes journeys would takefor example an hour, and hour and a half whereas by car they mightonly take 20 minutes as I am reliant on public transport so that'swhere the money goes on taxis. For the care allowance, which I get themiddle rate I use that to buy in meals for after I've had seizures andI'm not well enough to get out of bed and cook for myself, orsometimes I'm just too tired from the medication and just don't wantto make the effort, so on those days I will do something like order atakeway over the internet and have it delivered.I also occasionally use my DLA for things like buying in theassistance of a cleaner for the days when I'm too tired and too illtobe able to do things like vacuuming my home. For me it is anabsolute lifeline. I really wouldn't be able to manage without becauseof the things I am able to do with that extra money. I don't earn alot of money for my work. But the DLA helps me with all those extracosts and if I was to stop receiving it under the proposed changes, Iwould probably have to stop work, that would mean I would be thrownback completely onto benefits whereas while I'm working and receivingDLA which enables me to keep working, I'm actually paying back intothe pot, I'm paying my taxes and my National Insurance. For the statethat's actually a lot cheaper than taking away my DLA and stopping mefrom working.Person 2: My DLA form was so overwhelminglylong and difficult that I had to get a charity to fill it in for me.Eleanor: Hi, my name's Eleanor. I use my DLA to help me withtransport, to get train tickets. I also use my DLA to get support fordoing housework that I can't do, to get some shopping. I also use myDLA to help to adapt my flat so I can negotiate my everyday living.And I use my DLA to help me buy equipment.Pippa: Hi, my name's Pippa, also known as Incurable Hippie. I'm one ofthe bloggers with Where's the Benefit? I get DLA for my mental healthproblems. The difference it makes to me is massive. I can get veryextreme anxiety which will stop me from going anywhere or doinganything and I use my DLA for things like taxis or my telephone billto help me get support, taxis to appointments for instance. Anotherthing it's very helpful for is that sometimes when I'm unwell I'm notsafe to use things like sharp knives and heat sources and I can use myDLA to spend the extra money on things like ready meals which make ita lot easier to be able to eat. Without my DLA I would be a lot moreisolated, I would have less contact with my friends, which is a veryimportant part of me staying as well as I can, I would missappointments, which are also clearly important in helping me staywell. And I would overall become a lot iller, which would of coursecost the government a lot more in treating me, perhaps in hospital orcertainly more intensive treatment. So not only does DLA help me, italso helps the government save money, because it reduces the risk ofme getting so ill that I would need a lot more expensive care.Lisa: You can read all the My DLA tweets Lucy collated at http://storify.com/LucyTweeting/mydlaThere’ll be another episode of the WtB podcast… Eventually. In the meantime you can find our blogat wheresthebenefit.blogspot.com, you can ‘like’ us on facebook by going to www.facebook.com/wheresthebenefit. You can follow us on twitter @wheresbenefit (there’s a character limit on twitterusernames and we didn’t have room for the “the”. So we’re just @wheresbenefit) or if you’ve gotanything you want to ask us, or you’d like to pitch us a guest post for our blog then you can Email usat wheresthebenefit *at* gmail *dot* comThanks for listening!

Autism and Disability Living Allowance, DLA

Transcript:Deborah: Hello and welcome to the second Where's the Benefit? Podcast. The Where's the Benefit Podcast is now available on iTunes and if you've found us there, you may be interested in our blog at wheresthebenefit.blogspot.com and our twitter feed @wheresbenefit – no “the” in that.I'm Deborah, the Goldfish and today I'm talking to my boyfriend Stephen about form-filling. This last week we've been working on his Disability Living Allowance Renewal form. Disability Living Allowance or DLA is a state benefit which is supposed to help pay for the additional cost of being disabled, such as help getting around, preparing food, keeping clean and so on. DLA is probably the most difficult benefit to get and yet the government are wanting to cut the case-load by 20% and replace the benefit with something called Personal Independence Payment.Stephen, I wanted to talk to you about form-filling because this is something that I don't think many people understand, the sheer emotional weight of this process.Stephen: Yes, it's interesting, isn't it? Everyone has to fill in forms at some point in their life, whether it be a mortgage application or a marriage certificate, application for planning permission or whatever. Forms are a part of life, but when people talk about the stress of form-filling, I don't think they've known stress in form-filling until they have tackled the monster Disability Living Allowance form. In previous years, I have photocopied my previous answers to keep track of exactly what I've said because you get lost, especially coming from someone with an invisible chronic illness. I have ME and as anyone with ME will know – and anyone who knows anyone who has gone through the process of living with ME, it's a condition which is, or has been and is still by some people, questioned. It's questioned whether people are actually ill, whether they're making it up, whether it's psychological. And I mean obviously, dealing with the DLA form, it shouldn't really matter if the condition is physical or psychological because either way you have symptoms and those symptoms need looking after. But that's easier said than lived by. It does feel like you're being judged and your entire life is being analysed to see whether you are worthy, whether you are sufficiently pathetic, whether you're doing all that you can possibly do to be as well as you possibly can be. Whether you are simply being lazy. All of those things are turned over and after doing even a sixth of the form, you feel like the next page is going to ask how you intend to top yourself.D: I think because of the way these forms are worded, there's this sort of mentality that you're guilty of fraud or you're guilty of trying to swing the lead until you prove yourself innocent. And I also I think you're drawn towards presenting yourself as a kind of archetypal “good cripple”. You've got to have the right dose of suffering and the right dose of possitivity, because you're describing you're life...S: And suffering and possitivity in the correct kind of way.D: Yes, it's not at all “Social Model”, is it? It's very depressing. Do you think the questions that are asked are relevant to assessing your functional impairment?S: The questions themselves seem designed for no-one and everyone. Do you know what I mean? In trying to cater for every single person, the questions about walking for example, nowhere does it simply ask, how do you have problems walking? It asks, how do you have problems with the speed of your walking? How do you have problems with the way that you walk? Do you walk with a slight limp, a light limp I think it says, a heavy limp? Or do you drag a limb – presumably after it's been amputated and you're carrying it around with you afterwards. Do you need physical support? It also goes on to ask about how fast you can travel a certain distance. It says, can you walk 40 metres in less than two seconds – or something like that, I can't remember the speed at which they want you to be travelling. But what if you can't travel 40 metres? What if you could travel 40 metres if you were pushed down a flight of stairs quickly or you know. The lack of sensibleness in the questions, the lack of care in the questions, means that you're constantly feeling battered down by the answers. And battered by the questions. And it is amazingly depressing.D: You almost feel like your particular condition doesn't count, because it doesn't fit.S: Yeah, yeah, quite.D: It strikes me that the process of this form-filling is the polar opposite to Cognitive Behavioural Therapy. Cognitive Behavioural Therapy is a sort of applied stoicism which teaches you to avoid negative thoughts and avoid negative behaviours which lead to those thoughts. And yet, there couldn't be a more negative exercise for focussing on your symptoms, your limitations, the losses of your life.S: Exactly, it's exactly the same set-up as when we learn as good poorly people, not to answer “Hello, how are you?” with any sort of truth. You say, automatically, “I'm fine thanks, how are you?” Now, there are negatives to this. You do find yourself in a position where you are not able to be honest with others, but on the flip-side, you do find a certain positivity in...D: I think after you've been ill many years, you forget that you're ill, effectively.S: Especially if you're able to construct a life, carefully, in which you're able to achieve and be happy whilst minimising the damage done to you by poor health. And this is where you need Disability Living Allowance or any sort of disability benefit because you need monetary support in order to function in a way where you're not miserable all the time. I like to read very much. I've done a degree recently and that required a huge amount of reading. In order to achieve this, I bought myself a book-holder which means I can set up a book, lie in bed and not end up with pain in my arms and hands and shoulders from holding said book while I read. I still am limited, I can't read for a great period of time without my eyes getting sore and you know, various other depressing stuff that I don't like to go on about but which I've had to go on about in the form. As it is, I've got the benefit, or have had the benefit – I might not have by the end of this form-filling process – but I've had a benefit which allowed me to buy that book-holder and be able to read and be happy and productive without moaning.D: As somebody with chronic illness, you don't wake up every morning thinking, “Goodness me, I'm an ill person, I'm out of work, I can't walk down the garden, I need a wheelchair, I need this equipment.” It doesn't actually occur to you and if it did, your life wouldn't be worth living.S: Exactly. And not waking up thinking, “I'm a poorly person.” is a sign that you're doing well. That you're using your resources, that you're balancing your life, especially in the case of chronic illness. I imagine that it might be very different if you're only problem is that you're paralysed and wheelchair-bound, in that you might not be able to avoid thinking, “I'm paralysed” but I'm not sure that's true, I should imagine that people just get on. And the point about a disability benefit is that it's there to allow you to get on. It shouldn't have anything to do with how miserable you are unless you're claiming because you're so miserable you can't get out. And if a form makes you feel so miserable that you have to thump a pillow, or that you end up crying, then you end up having to claim for psychological reasons as well as the other ones that got you there in the first place.D: We all pay National Insurance, so in many ways claiming benefits is claiming on that insurance. Everybody's entitled to it when those circumstances arise, just like any sort of insurance. But I can't really imagine an insurance claim that would be so emotionally loaded as this.S: Well indeed. Recently my father was in a car accident and had to claim on his insurance. He had to even say that it was his fault the accident occurred even though it was quite obvious to everyone that the other driver was speeding. But because my father was in such a state that he wasn't able to call the police, it meant that he had to accept blame. But no-one, no-one on the insurance team, no-one in his home, no-one in the streets, no-one in the newspapers, no-one in parliament, talked about him like he was some fraudster, or liar, or even a bad driver.D: Many years ago, my sister had to make an insurance claim on the grounds of a broken nose. It wasn't very badly broken, but it was broken and it wasn't like it was before. But she didn't have to write an emotional essay about how her broken nose had effected her. She just needed the medical evidence, she needed a photograph of before and after. So even with a medical thing, it wasn't loaded with the sort of emotion that these claims are.S: And this is where I think that there's an error in relying on a form for these things, like this form. I'm sure a form could be created, but there needs to be more trained, professional and caring human interaction with people – which would also cut out the vast majority of these frauds that go on. Because any form, when a form is the one thing that is relied upon, can be used incorrectly. If you know how to fill in a form. It's like my exams when I was doing A-Levels, I knew exactly how to fill in the exam papers in order to get an A, because there was a set response, that if you went through the right process, then you got it. And we know, through filling out this silly form, that if you stick to just ticking the boxes - which is really all you ought to need to do if you're going to have some other, further response - then you don't get the benefit. Because you need to write in these horrible big boxes, “Oh my life's so awful, I can't do any of this, eugh!” otherwise they don't listen to you. And it's a war of attrition.D: I should point out that the benefit isn't granted on the grounds of merely the form, but they do contact your doctor and so on, always. And very often they send out an independent doctor to check you out.S: But that doctor isn't always that good. I've never – the one time I had a doctor visit me at home, he merely filled out the form again, but just asking my opinion about things at the same time. He was useless.D: But it is, as you say, very much a matter of attrition. So many people I know have been turned down for DLA at some point for no particular reason. There's no pattern when it comes to conditions or mistakes they could have made. They simply test you, really, to see if you're prepared to fight for it. And of course the most vulnerable people, the people in most need of this help, are the least able to fight for these things.S: Indeed and the least capable people, in this sort of situation where a form is so destructive, mentally – I mean, it's been destructive to me, physically and the amount of pain it caused is unbelievable. And that was with huge amounts of help from Deborah.D: And your Mum!S: And my Mum. And all of the times that have gone before, doing this form, means I've got all this experience to work on. But it's a huge amount of hours and pain and whatever. I didn't sleep properly last night, I have forms flittering through my nightmares. And that's coming from someone who claims at least to be relatively mentally capable and mentally healthy – although I do get a certain degree of anxiety from the pain and symptoms. But we have seen, at Blogging Against Disablism Day, we saw someone who had mental illness who hadn't reapplied for her – I think it was her benefit, it was a lady – she reapplied for her benefit because it was too much for her. How can that, how can that be? How can we look after people if we're looking after them with a form they're incapable of dealing with?D: Of course, you've filled in your renewal form now, I filled in my DLA renewal form at, well it was Christmas by the time I sent it off, it took me a couple of months. But in the next couple of years, we'll both be facing the Employment and Support Allowance assessment and if the proposed changes go ahead, we'll both have to fill in the forms for Personal Independence Payment, which is going to replace DLA. So we're going to have to go through all this, all over again.S: And the problem, it's not just the form. It's the process of filling in the form, of feeling judged and then, of actually being judged, of receiving a letter – Deborah received one saying that the fainting that she suffers from is something that she can “make reasonable measures to guard against”. Which yeah, it's fine, she can do that. If she doesn't ever get out of bed, or, et cetera. We're all judged, in the process of gaining benefit. And it's a soul-destroying process. And it changes us from being people to being a set of conditions, a set of problems and so this makes us disabled. We become worse off, through seeking help. Deborah will be all right if she only stays in bed, she doesn't have to worry about fainting. And that's not what a benefit, a disability benefit is meant to do for people. It's meant to help them. It's meant to make things possible that weren't previously possible.D: Thank you very much for talking to me, Stephen. I shall see you later! And thank you for listening. As I said at the top, but I'll say it again, the Where's the Benefit Podcast is now available on iTunes and if you've found us through iTunes, you may be interested in our blog at wheresthebenefit.blogspot.com and our twitter feed @wheresbenefit

Lisa's note: WtB has a podcast! I'm so very excited. I have to say a huge, huge, huge thanks to Goldfish for all her hard work this week making this audio file into a podcast by doing all the research as to how one actually sets up a podcast. She typed up the transcript that's beneath the jump too. I also have to say thanks to the people that spoke to me on Monday. We'd have no audio file if it weren't for them.You can find our podcast in iTunes here. The feedburner feed is here.Lisa: Hi and welcome to the first episode of the Where’s the Benefitpodcast. I’m Lisa, one of the founders of WtB.This week from the 9th to the 15th of May is a “week of action againstAtos” organised by the campaign group Benefits Claimants Fight Back.Atos Origin are the private company contracted by the government tocarry out the medical assessments to determine whether or not a personis eligible for benefits. This includes the controversial WorkCapability Assessment to deem if a person is eligible for Employmentand Support Allowance.On Monday afternoon I went down to the protest and picnic outsideAtos’s headquarters in London and spoke to some of the protesters. Iasked people who they were and why they’d come out to demonstrate andthis is what they had to say.Marmie: I'm Marmie. I'm here with the DPAC. I'm also here as anAfrican woman with impairments and I'm really here to say that whatAtos is doing against disabled people is inhumane, is outrageous andis quite barbaric. For years, they've been making huge amounts ofprofits on the backs of our oppression. It needs to stop. We're hereto get the message across to Atos that we will not stand for this. Weare very united as disabled people. We must keep up the pressure. Wemust continue the struggle. And eventually we will win.Our message to the Con-Dem government is you cannot carry onoppressing us. We are here to stay. We're going to carry oncampaigning and protesting. And we hope that the whole of the UK willwake up to Atos Origin, as just another greedy multi-national companywhich is on the backs of disabled people, destroying our lives andmore or less killing people! Because people are living in fear.They're living in fear of oppression. They're living, having theirbenefits cut. They're living against all these assessments. It's allinjustice, it's all inhumane and it needs to stop.Carol: My name is Carol, I'm the mother of a disabled child. And thereason I'm here is because I want to show my opposition to thegovernment cuts. I'm outraged by Atos and the methods that they'reusing to basically get people off disabilities. I think this“check-box” system where they invite people in for an interview and,you know, they have that computerised system which they justbasically, uh. It's a really inhumane way to treat people and I'moutraged to hear people are being thrown off benefits,. It's almost asif the State wants to slough off a whole section of people and leavethem to fend for themselves. It seems to be that that's what thepurpose is; just to get people off benefits, remove them from publicsight and just leave people, you know, without any support.Yeah, so that's why I'm here and, um, I intend to come to as many ofthese as possible. I hope that I can come to as many of these aspossible. I hope the movements grows and we can link all thesestruggles together. I feel that disabled people are kind of at theforefront of the struggle. Really I just think that, you know, the wayin which the government has targeted them, as if there would be noopposition. I'm glad to see that people turned up here today and Ithink the vibe has been very good and strong.Yeah, I just wanted to mention David Cameron as well because before hewalked into Number 10, he had said that he understood the situation ofdisabled people and that he would make sure that they were protectedand their benefits would not be touched and so on. And then for himto, you know, as soon as he walks into Number 10 that completelychanges. And it's like there was this language where they say onething and then they do the complete opposite as if we're too stupid tonotice that they're basically making these cuts. And considering thathe had a disabled child, he also relied on the state for basicservices. How can he do this to a whole swathe of people? It's justhypocritical.Adam: My name's Adam Lotun. I'm here for myself personally, and alsoto represent those people who can't be here because of theirdisabilities. I'm here to try and further the argument and raise thevoice of the disabled community against the use of the Work CapabilityTest by Atos and their involvement in the whole process of assessingpeople with disabilities. And also, the non-consistency in how Atosoperate. You have assessors who are nursing officials, nursingpractitioners. You have doctors – who may be medical doctors – or youhave “medical professionals” who could be a podiatrist, could be anoptician or could just be an ENT person. And they're going to talk toyou and make a ruling on you as a disabled person even though theyknow nothing about the disability they're looking at or howdisabilities effect people in their lives today. So that's what I'mhere for.Also to have a go at the Con-Dems today, about their policies ofdiscriminating against people with disabilities. The one thing Icannot understand is that we do have the Equality Act and the DDA butstill the government break that. That's about it.Eleanor: Hi, I'm Eleanor. I'm a co-founder of DPAC and we're heretoday to protest about the Atos Origin and the 300 million pounds theygot from the DWP. But basically we're here to protest about what Atosis doing and about the assessments which has created an environment offear for a lot of disabled people. So much so that some of them arethinking of committing suicide because they are at great risk oflosing the support system which has been what is, for many of them,what is used to keep them going.Sam: My name's Sam, I'm nineteen, I work on organic farms. I've got afriend who uses a wheelchair and claims Disability Living Allowance.She lives in Leeds so she can't be here today but she uses on-linedisability forums and she told me stories of people who are waitingfor the day that their letter arrives to be reassessed on a systemthat's not basing the decisions on facts but simply on targets forrandom cuts they've been told to make by the government. And some ofthese people who are waiting for their letters to arrive arecontemplating suicide and serious consequences in their personal andfamily lives based on whether they can get the disability benefitsthat they've been claiming for years and that they're entitled to.Keith: I'm here because of the systematic abuse of disabled people.Our people are disabled by society. One of the lies put about by theDaily Mail and the other yellow press is that disabled people don'twork. The reality is that most disabled people I know do work, theyjust don't get paid for their contribution to society. Obviously,within their resources, and many conditions are you're better somedays than other days and when you're not well, it really effects youfar more. Everyone has good days and bad days. The differences is forpeople with impairments is the bad days means they can't go out orthey can't function at all. Impairments effect us all. And if you'venot now got an impairment, bare in mind that in the future you'relikely to, statistically speaking, to have an impairment and to be inthe same situation as the people being cut off now.Let's say no to Dignitas, Atos and the stealth culture. We're the forthrichest country in the world, one of the smallest rich countries inthe world and we can afford to give civilisation and dignity, becausethe two main aspects of equality are dignity and respect. And we'reneither getting dignity nor respect from this government, in order tosupport their tax-fiddlers in the multi-national companies. .Amx: I'm Amx Waters, I'm here from Queer Resistance which is ananti-cuts group, an anti-cuts collective made up of LGBTQI people.We're fighting the cuts and also defending the right to protest. Alot of queer people are suffering from the cuts to benefits at themoment, especially cuts to HIV support services and mental healthcare. Basically, Queer Resistance is here to stand in solidarity withall of those people.Sam B: My name is Sam Brackenbury. I'm here to defend benefits. I'mhere to defend independent living. And I'm here to defend people whocan't speak for themselves because they are locked up in nursing homesand they're being deprived of DLA.People think direct action means hitting it on the streets andblocking roads. It doesn't. It means picking up the phone, writingto your MP, writing to the papers, phoning your local radio stations,saying that you're not going to put up with this. Right. Peoplevoted for a government that's let them down. The government has letus down systematically, doesn't matter what political colour they are,they have let us down systematically throughout the years. Right. It'snot governments that make the difference, it's people that make thedifference. As has been proved in Egypt, it's been proved in Yemen.It's been proved all over. So if disabled people really want to changethings, it's up to them to get out on the street. They can't write totheir MP, expect an able-bodied MP to understand what they're goingthrough. If they're really irritated about something, it's up to themto get out on the street, start picking up the phones and askingawkward questions.Lisa: For more information on Benefit Claimants Fight Back theirwebsite is at benefitclaimantsfightback.wordpress.com or they tweet as@claimantprotestWe’ll be back again next week, or sometime around there. With us allbeing sickly types we can’t promise we’ll be able to keep to a strictschedule of weekly podcasts. But we’ll try our best.In the meantime you can find our blog atwheresthebenefit.blogspot.com, you can ‘like’ us on facebook by goingto www.facebook.com/wheresthebenefit. You can follow us on twitter@wheresbenefit (there’s a character limit on twitter usernames and wedidn’t have room for the “the”. So we’re just @wheresbenefit) or ifyou’ve got anything you want to ask us, or you’d like to pitch us aguest post for our blog then you can Email us atwheresthebenefit *at* gmail *dot* comThanks for listening!

5 live Investigates speaks exclusively to head teachers who claim stimulants are being over-prescribed to young children. They are raising the alarm on what they say is "over-prescription" of powerful medication to children from dysfunctional families, who have behavioural problems which make them "extremely naughty" - but who they suspect are not actually sufferers of Attention Deficit Hyperactivity Disorder (ADHD). The number of prescriptions written for young people suffering from ADHD is skyrocketing, with around 420,000 issued for 16-17 year olds alone in 2007. ADHD is a serious psychiatric condition and amphetamine drugs are proven to help, but are children who don't need medication also ending up on powerful drugs that have major side effects? Teachers and psychologists tell the programme how some parents, struggling with difficult children and motivated by the benefits they could receive on Disability Living Allowance, seem to be pushing for a diagnosis of ADHD. They paint a picture in which schools are not always consulted by doctors - despite the fact that clinical best-practice is to ask schools first. In the week where the government is promising more money for 'talking therapies' for children, 5 live Investigates explores the real stories of children who have been prescribed powerful ADHD drugs which their teachers fear are inappropriate and are used to "just keep them quiet" rather than offer any real help. Also on the programme, meet Stephanie Spacey, who caught the wrong train from Coventry to London, and is now being taken to court by Virgin Trains in a case that could cost her almost £6,000. And the publishers selling books which consist entirely of articles copied from Wikipedia. Presented by Adrian Goldberg. To contact the programme, email goldberg@bbc.co.uk - or send comments via Twitter to @5LInvestigates.

Presented by Kiruna Stamell and Mat Fraser. Changing the rules of disability talk, this month Kiruna tries to work out why she was refused Disability Living Allowance by going through the forms on air for all to hear. Playwright Donna Franceschild talks about the DVD release of her '90s BBC2 drama Takin' Over the Asylum. Opinionated news from Rob Crossan and a Vegetable, Vegetable or Vegetable contestant who isn't disabled! Huh? Find out how that'll work by downloading the show now.