Hello - Please help me to represent the Autistic community

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Holly - Moderator

Parents
  • I have had so many problems with the DWP in my life. They are so bureaucratic.

    Even hearing about the DWP and the Jobcentres make me feeling sick. They kept pushing me into unsuitable jobs. I found myself a better job.

    I am struggling so much in the workplace but the DWP does not care. They prefer me to keep suffering.

    A big problem with them is phones. They keep pushing people to use phones. That is horrible.

  • The biggest problem I have had in my dealing with DWP is that they provide no other means of contacting them than by phone. They can process an application for ESA properly only if it is done by phone. I really don't feel comfortable speaking on the phone or initiating a phone conversation, and, besides, it seems completely stupid to answer someone's questions over the phone so that they can fill in a form for you, a form which you are perfectly capable of filling in yourself. With a form as long as the ESA form, it would probably take over an hour of that kind of torture.

    Because they can't be bothered to set up their website so people can fill in the ESA form for themselves online, the only other way to apply for ESA is by sending in the paper version of the form. After I sent my form in, using a first class stamp so it would arrive that much sooner, they claimed they hadn't received my form until nearly a month after I sent it. Therefore, I was denied several weeks of benefits to which I was entitled, and the delay was caused by someone there who just didn't bother to open the post.

    When I complained about this, first the supervisor admitted that they had actually received my form several days before they claimed that they had, but still over three weeks after I sent in the form. The supervisor said that I should have phoned to make my application for the ESA. I told him that I am very uncomfortable speaking on the phone, and that the DWP should be more sensitive to people with a disability that makes phone calls very difficult, given that they deal with disabled people all the time.

    Another thing that happened with my application is that they sent the letters and forms to my previous address (it was perfectly clear on the form that it was my previous address and not my current one) so basically a bunch of strangers now know my personal details and that I applied for benefits. I complained about that as a breach of my privacy, not to mention the law, and they didn't bother doing anything about it. When I complained about that, the same supervisor told me that that wouldn't have happened if I had applied over the phone. It also wouldn't have happened if people employed by the DWP could read. Why do they ask for the previous address anyway? I moved away from there three years ago, so the fact that I lived there has no bearing whatsoever on my current benefits application.

    Then, to add insult to injury, they finally sent some of the forms, but not all of the information I needed, to my correct address. They didn't bother telling me when the form was due, and dated the deadline from when they first sent the forms to the incorrect address!!!! So I had no chance of getting the form in on time, given how long it takes for them to open their post, but they sent a letter threatening not to give me benefits at all if I didn't return the form on time.

    So, basically, as a disabled person who has difficulty using the phone, I was triply penalised for not using the phone to apply for the ESA benefit. That is the very definition of disability discrimination. Perpetrated by a government agency intended to cater to disabled people.

    It says on the written documentation that people that have applied for the ESA can go to the Jobcentre to communicate regarding their ESA application (for example, if someone needs more time to return the ESA50 form, as I did, because it had originally been sent to the incorrect address), but that isn't the case. If you go to the Jobcentre and try to ask them about the ESA application, they will tell you to phone the DWP!!!!!

    Then I was told I would have to have a face-to-face assessment. They booked the appointment at the same time as a medical appointment I already had booked. So, of course, the only way to contact them is by phone. Again. Did I mention I feel very uncomfortable using the phone to contact people? I even put it on my ESA50 form. No doubt, the fact that I managed to phone in order to change my appointment will be counted against me, even though I had no choice but to phone them, as they offer absolutely no other way to contact them.

    This is the twenty-first century. There are websites and email, and even text messages, but they force people to use the phone to contact them. If that weren't bad enough, it takes about half an hour for them to finally answer, and all that time, I am paying for the call. I've had no income since September, and I have to pay to call the DWP so that I can get benefits. RIdiculous.

    And don't even get me started on how completely degrading the ESA50 form is.

    I hope that gives you some examples of possible training topics, Angie.

  • You can get an advocate to speak on your behave when having to speak on the phone. When you post things to places like the job centre always get a proof of posting, which to my knowledge is free. I rarely ever use the phone, if it was for something like the job centre, I either get an advocate or somebody else to phone for me or I accept that it’s not worth the hassle (to me) and don’t apply for the benefit. I’m sorry you had such a hard time with them, I’ve  always had a good experience but then I’m very clear with them about what I will and will not do and get people to step in for me with the things I can’t do. For example, they never phone me because they know I won’t answer and I never phone them and they always back date things etc if I send a letter or whatever. It might be wise for you to get an advocate to support you or take over any dealings with them on your behave as clearly this is not something you can deal with. It helps me a lot having someone to do the things I can’t, such as phone calls. Because you’ve made that phone call they might conclude that yes, you find it very uncomfortable and difficult and it might cause meltdowns etc, but you did it where as I just won’t use the phone with them as it stresses me out so they don’t try to get me to use the phone anymore, they usually send text messages. If you’re clear and consistent with them they will help but maybe you need the support of an advocate as well. 

  • It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    It would be not only nice but fair.

  • I find it extremely difficult to meet strangers. I do everything to avoid unknown people.

    My communication with strangers is awful. I am almost always extremely anxious.

    I almost never go to the post office workers/cashiers.

    If I cannot do a self-service checkout then I do not do it at all.

    I do not think that proof is posting is going to work for me.

    However, an advocate would be very helpful to me.

  • You’re welcome. My support worker has been great. The well being team is for people who don’t quite meet the criteria for social work support or for people who would rather not go down that route and it helps prevent the situation getting worse. 

  • I had proof that I posted the thing in mid December and the supervisor didn't care. He said they only care about when they claim to have received it, which was several weeks after it was sent. I don't think they'd even care if I had paid for delivery confirmation. It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    Thanks for the info about the support worker.

  • It doesn’t matter what they care about, if you have proof of posting, they cannot deny that. And if you had friends, they would be more than happy to make all of your phone calls for you, that’s what friends are for. 

    You can get access to an advocate via your local social services office or you can google them. I googled them and I found one which I could contact via email. It was slightly out of my area but it was the only one I could email and they agreed to work with me anyway. They took a little over a week but they got a guy to come to my house. He helped me and supported me with getting the pip form and then he completed it on my behalf. I don’t pay him a penny, the service is free. He is concentrating on my benefits applications and my support worker, who was arranged via the job centre, makes all my phone calls, opens letters etc and deals with letters. When my work coach said something about not accepting my sick note, I refused to listen to another word she said and I simply got my support worker to liaise with the job centre to sort it out on my behalf. I don’t deal with applying for benefits. I could. I’m an excellent social worker and mental health practitioner and would do this thing for my clients, but when it comes to doing that stuff for myself, especially when I’m not well, it stresses me out and currently, I’m reducing my stress not adding to it so I get somebody else to do it for me. I don’t do anything that stresses me out as I’m in burnout and therefore I need less stress not more, just now, so I hand stuff over to other people to complete on my behalf. And I don’t pay anybody a penny. I will give back in other ways though. For example, when I’m ready, the guy who is helping me with the benefits, is going to train me up to do what he does so that I can then also go to peoples houses and support them, free of charge. I will do this in my free time. If the DWP makes things more difficult, I simply match them by making it easier, for example, I simply get some help and get somebody to act on my behalf. I keep things simple, I don’t complicate them. Oh, my autism psychiatrist helps me out as well. He said he’ll write a letter to the DWP as he can see how stressed out the whole benefits system makes me. So I get help from wherever I can, I’m not as fussy as you, I’ll let family, friends, anybody help me but because I’m self isolating just now, family and friends aren’t the best help for me so I get advocates, my gp, psychiatrist, support worker, anybody really. I now attend an autism group but I didn’t know about it until the first day I had to attend the job centre for universal credit. I started to have a meltdown in town, on my way there, so I walked into the nearest shop, and just said, to whoever was there, I’m having a meltdown, I’m on my way to the job centre, I’m autistic, I just need to stand inside your shop for a minute to calm down. It turned out the woman who owned the shop, who was in the shop at the time, has a son who is autistic, who was also in the shop at the time. I didn’t really see anyone at first, her or him (there was nobody else there) because I was freaking out. But as I got talking to them, I calmed down and they told me about the weekly autism group which I now go to most weeks. So I’m not fussy, I’ll take my help wherever I can get it. I’ll go and knock on some random house door if I have to and just say I need some help. 

  • To get proof of posting, you simply tell the post office worker/cashier that you want proof of posting. They put a sticker on your letter and give you the other half which has the date the letter was posted then they put the letter in a bag ready to be taken to the sorting office. This is free. If you want the recipient to sign for the letter then that costs money. There are several options but proof of posting is free from all post offices in the U.K. 

    You can get an advocate, free of charge, to speak and act on your behalf by either contacting your local social services and asking for contact details of a local independent advocacy service, preferable one that you can contact via email or other similar method. Or you can google advocacy services in your local area. You can also ask your local social services office if they have a well being team and if they do, you can ask for a referral. You just need to tell them how you’re struggling and it doesn’t usually take more than a week to get assigned to a worker. Advocates are brilliant but I have found the well being officer to be of great help to me. You’re entitled to make use of both of these services, free of charge. In fact, social services and local government offices want you to use these services. They seem them as prevention as opposed to cause, which is far cheaper for them. The well being officers are great and have a vast amount of knowledge and experience of opportunities etc in the local area. 

  • I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.

    I am in the same situation and face the same reality.

    If you would like a friend, I can be your friend. Unfortunately, I cannot help you to speak on the phone on your behalf and help you that way.

    I really know how desperate and sad I feel in those situation. For me it is awful to realize that someone else faces the same misery.

  • Who am I supposed to get to speak on the phone on my behalf? I have no friends, and even if I did, I certainly wouldn't keep any of them if I asked them to make my phone calls for me.

    They don't care about proof of posting. They only care about when they receive the form. In my case they were counting that as the the day they got around to opening the envelope, which was over a week after they claimed to receive it, which was in turn more than two weeks after they must have actually received it. I could have walked the envelope to them in the time it apparently took the post to get to them.

    I'm not sure who you are suggesting I get as an advocate. As I said, I don't have any friends, and I'm certainly not going to pay someone to help me so that I can get the tiny little amount they say I can live on but which actually doesn't even cover my monthly home payment.

    I could deal with applying for benefits if they made it less difficult for people with disabilities, who are, after all, the people for whom benefits are intended. I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.

Reply
  • Who am I supposed to get to speak on the phone on my behalf? I have no friends, and even if I did, I certainly wouldn't keep any of them if I asked them to make my phone calls for me.

    They don't care about proof of posting. They only care about when they receive the form. In my case they were counting that as the the day they got around to opening the envelope, which was over a week after they claimed to receive it, which was in turn more than two weeks after they must have actually received it. I could have walked the envelope to them in the time it apparently took the post to get to them.

    I'm not sure who you are suggesting I get as an advocate. As I said, I don't have any friends, and I'm certainly not going to pay someone to help me so that I can get the tiny little amount they say I can live on but which actually doesn't even cover my monthly home payment.

    I could deal with applying for benefits if they made it less difficult for people with disabilities, who are, after all, the people for whom benefits are intended. I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.

Children
  • It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    It would be not only nice but fair.

  • You’re welcome. My support worker has been great. The well being team is for people who don’t quite meet the criteria for social work support or for people who would rather not go down that route and it helps prevent the situation getting worse. 

  • I had proof that I posted the thing in mid December and the supervisor didn't care. He said they only care about when they claim to have received it, which was several weeks after it was sent. I don't think they'd even care if I had paid for delivery confirmation. It would be nice if people had any recourse for the mistakes the DWP make, but they have the power so they do what they want.

    Thanks for the info about the support worker.

  • It doesn’t matter what they care about, if you have proof of posting, they cannot deny that. And if you had friends, they would be more than happy to make all of your phone calls for you, that’s what friends are for. 

    You can get access to an advocate via your local social services office or you can google them. I googled them and I found one which I could contact via email. It was slightly out of my area but it was the only one I could email and they agreed to work with me anyway. They took a little over a week but they got a guy to come to my house. He helped me and supported me with getting the pip form and then he completed it on my behalf. I don’t pay him a penny, the service is free. He is concentrating on my benefits applications and my support worker, who was arranged via the job centre, makes all my phone calls, opens letters etc and deals with letters. When my work coach said something about not accepting my sick note, I refused to listen to another word she said and I simply got my support worker to liaise with the job centre to sort it out on my behalf. I don’t deal with applying for benefits. I could. I’m an excellent social worker and mental health practitioner and would do this thing for my clients, but when it comes to doing that stuff for myself, especially when I’m not well, it stresses me out and currently, I’m reducing my stress not adding to it so I get somebody else to do it for me. I don’t do anything that stresses me out as I’m in burnout and therefore I need less stress not more, just now, so I hand stuff over to other people to complete on my behalf. And I don’t pay anybody a penny. I will give back in other ways though. For example, when I’m ready, the guy who is helping me with the benefits, is going to train me up to do what he does so that I can then also go to peoples houses and support them, free of charge. I will do this in my free time. If the DWP makes things more difficult, I simply match them by making it easier, for example, I simply get some help and get somebody to act on my behalf. I keep things simple, I don’t complicate them. Oh, my autism psychiatrist helps me out as well. He said he’ll write a letter to the DWP as he can see how stressed out the whole benefits system makes me. So I get help from wherever I can, I’m not as fussy as you, I’ll let family, friends, anybody help me but because I’m self isolating just now, family and friends aren’t the best help for me so I get advocates, my gp, psychiatrist, support worker, anybody really. I now attend an autism group but I didn’t know about it until the first day I had to attend the job centre for universal credit. I started to have a meltdown in town, on my way there, so I walked into the nearest shop, and just said, to whoever was there, I’m having a meltdown, I’m on my way to the job centre, I’m autistic, I just need to stand inside your shop for a minute to calm down. It turned out the woman who owned the shop, who was in the shop at the time, has a son who is autistic, who was also in the shop at the time. I didn’t really see anyone at first, her or him (there was nobody else there) because I was freaking out. But as I got talking to them, I calmed down and they told me about the weekly autism group which I now go to most weeks. So I’m not fussy, I’ll take my help wherever I can get it. I’ll go and knock on some random house door if I have to and just say I need some help. 

  • I'm perfectly capable of filling in a form or sending an email, but, for some reason, they need to make it so it's as difficult for people like me as it possibly can be.

    I am in the same situation and face the same reality.

    If you would like a friend, I can be your friend. Unfortunately, I cannot help you to speak on the phone on your behalf and help you that way.

    I really know how desperate and sad I feel in those situation. For me it is awful to realize that someone else faces the same misery.