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  • FIRST POST
    • MyLonelyWorld
    • By MyLonelyWorld 21st Dec 17, 3:48 AM
    • 48Posts
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    MyLonelyWorld
    ASD and Appointee
    • #1
    • 21st Dec 17, 3:48 AM
    ASD and Appointee 21st Dec 17 at 3:48 AM
    Hello

    I'm not sure whether this is the right section or not, but I require some help/input.

    I'm Autistic (ASD) and my mother is my carer and appointee - she receives ESA and DLA/PIP on my behalf.
    My relationship with my mother has deteriorated over the last year after I discovered she hadn't been entirely upfront about my benefits since I had started claiming ESA back in 2011.

    During the application process for ESA (Autumn 2010), my mother said I'd be receiving a small monthly allowance out of my ESA. However, every time it was discussed after that initial statement, the number was cut in half. Eventually that was forgotten about until September 2011 when I finally questioned why I had yet to receive the money she was suppose to be allocating me. From that time I started receiving 20 a month out of my ESA.
    Over the new few years, she kept telling me how expensive I am to keep, and how she's out of pocket because I don't leave the house often (due to psychological distress), I run up more utility and food bills than anyone else in my household.

    In 2014 my mom started to miss giving me my 20/month allowance. At first it was a few months here and there, but then it ultimately stopped.
    Going forwards, I had to become reliant on money from grandparents for pay for things like clothes and shoes.

    In the Spring of this year I discovered my benefits (ESA specifically) was a lot higher than I was previously led to believe. My mother who prides herself on treating all her children equally had been receiving 720/m on my behalf, whilst asking my siblings for 200/m for they're board.

    A few weeks after my discovery, I confronted my mom about why she had been receiving that sort of money on my behalf, and providing very little for the amount of money. This led to an argument where she effectively said I need to start looking for somewhere else to live, because I said I didn't believe that amount of money she is receiving for my care is justified by the small amount of additional care that I do receive from her. She offered to help start the process into looking for somewhere else to live, and would transfer my benefits over into my name. However, she gave me a draft letter that she intended to send to the DWP saying I was capable things I'm not, and that would be damaging to my PIP transition in the near future. She then proceeded to ignore me.
    After a few weeks of being ignored,, things had cooled down, and she agreed to start giving me a monthly allowance again, but significantly higher.

    During September I had my PIP home assessment. Whilst I'm aware I was successful in my claim, I have yet to actually be informed/updated on my DLA>PIP status.

    In October the subject was brought up again. I asked for slightly more money so i could start becoming a bit more financially responsible for myself/my needs. This led to me being told I no longer have a home, and to remove myself from her house. This is something I perceived to be a bluff. Instead I was ignored for nearly 3 weeks.

    Last week I asked for my NI number to confirm my identity on a website. She was reluctant to give it, and began to insinuate that I was up to devious things, despite me explaining that I needed it to confirm my identity. This made her paranoid that I was up to something, despite being transparent with the reason I needed it.
    On Tuesday morning I was woken up to her asking me if I had been messing around with my PIP because it hadn't been paid into her account.

    And now we come to today... I asked her if I was going to be receiving my Christmas bonus this year (this is the first year I've even known about it). This led to an argument and my telling her a few home truths (I insinuated that she has been financially exploiting me).

    She has since thrown me out, and I'm currently at my grandparents house. She has made threats to get the police involved if I try to return home. She's apparently called them saying I've been emotionally and domestically abusive towards her, and that Social Services are getting involved to say I'm more capable than I've made myself out to be.

    So I guess my question is: What are my options?

    If I apply for something like supported living, would that affect my benefits?

    Can I have my benefits in my name, and receive the necessary support for the administration side of things (filling in future forms, attending assessments)?
Page 6
    • deannatrois
    • By deannatrois 19th Jan 18, 6:33 AM
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    deannatrois
    Sorry I have only just seen this post.

    You can have the appointee rescinded on the basis that they haven't been acting for your benefit. I will try to give you a few links and summaries which might help you explain why you want the appointeeship changed. https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/578275/part-05-appointee.pdf

    This says

    Revoking an appointment

    5400 There are four circumstances where an appointment can be revoked:
    !!!8226; if the appointee does not act appropriately within the terms under which the appointment was granted, an officer acting on behalf of the Secretary of State can revoke their authority
    !!!8226; if there is sufficient evidence that the customer is capable of acting for themselves and does not need an appointee to act for them !!!8211; see also 5402 below.
    !!!8226; where the appointee himself becomes incapable. The Secretary of State should take normal action to appoint a replacement.
    !!!8226; where the appointee no longer wishes to continue. Hopefully he will provide a replacement otherwise we will have to contact social services.


    I found one service that provides financial appointeeship, there may be others http://www.moneycarer.org.uk/services/appointeeship

    I am afraid having a Care Assessment takes a little bit of time. I had one (for ASD as well), that took a few weeks to happen, then it took about 2 half months to be appointed a specialist social worker. I phoned fairly frequently to remind them I was still waiting and needed urgent support, so it wasn't as long as it could have been.
    I am still waiting to get a support worker to help me with practical things. The care system is severely overwhelmed, unfortunately.

    But they have helped me with other things I need, including put me in contact with an advocate service who has already helped me achieve more with my Diabetes Care than I have in my entire life (I don't tend to talk too well and give up too easily, they made sure I saw the appointment through and got the care I needed for the very first time). They provide support with meetings and things, make sure your voice is heard if you find these things difficult.

    I think you can contact them and self refer, might be worth a try http://www.seap.org.uk/im-looking-for-help-or-support/

    Well done for completing what you have. It will improve but unfortunately not as quickly as you need right now, but it will happen. You won't need to reapply for PIP, you can easily prove you have the same needs whatever your mother says.

    My older son (who also has ASD) is now using a budgeting app that he swears by - and managing his finances very well so I will be revoking the appointeeship I hold for him very shortly. It may well be not that you aren't capable of handling your finances, but that you aren't used to it. However, I do agree that it is more difficult to deal with the day to day admin and phone calls with benefit things. If you get the wrong person, its very easy to hit a brick wall. With any organisation, if you don't get help the first time, try again. And again. Until you get the help you need. I don't always say thiings right and hit brick walls so I just wait til I am calm again and phone again. Usually I get there in the end!

    Do you have a local Autism group? Mine is Kent Autistic Trust. They help a lot, even helped me fill in a PIP form that I found completely impossible to do.

    Have you contacted MIND or the National Autistic Society. I tend to avoid the phone and email them. http://www.autism.org.uk/get-involved/about-us/contact-us.aspx

    Sorry if I have given too much information. Just read it bit by bit.

    I was only diagnosed last year.., my son (who is 22) was rediagnosed by the Royal Maudsley Hospital. Because we have had this done we have been able to get out of borough funding for some specialist CBT therapy that will help with coping skills. It has taken well over a year, but well worth doing for our future lives. I wonder if your GP could refer you to be reassessed? They found (after years of CAHMs telling me I didn't have ASD, and my son only had aspergers) that I did, and my son had not only aspergers but ADHD, Anxiety Syndrome and a few other things. All of which help him get appropriate support and understanding.
    Last edited by deannatrois; 19-01-2018 at 6:52 AM.
    • w06
    • By w06 19th Jan 18, 8:56 PM
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    w06
    Hi OP, sorry for the delay, I foudn a few interesting websites about social prescribing. It seems to mean different things in different areas, it definitely looks worth giving a try though. It's to find ways to help you integrate into society and be less isolated.

    a few links that might help explain:

    this one is someone talking, and also a transcript of what they're saying, about what they do as a social prescriber http://listen.health.org.uk/stories/leisa-batkin/?gclid=EAIaIQobChMI5suqzvLk2AIV4b3tCh0XWgAGEAAYAyA AEgK9E_D_BwE

    and a link to a newspaper article from a few years ago giving an example of what it could be like https://www.theguardian.com/society/2013/nov/05/social-prescribing-fishing-group-doctor-ordered

    If you google social prescribing nhs followed by your county or town it might show you in more detail what to expect.

    You're doing really well op, you, and your Nan, should be proud of you
    • Ames
    • By Ames 19th Jan 18, 9:46 PM
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    Ames
    I agree with W02 but to get the best results you need to find out the name of your local CCG and google social prescribing and that name.

    When the crisis team contacted me last year they just googled and told me I had to ask to be referred to a programme that was for a different part of my city. What's available can be very, very localised.
    Unless I say otherwise 'you' means the general you not you specifically.
    • MyLonelyWorld
    • By MyLonelyWorld 24th Jan 18, 10:45 PM
    • 48 Posts
    • 15 Thanks
    MyLonelyWorld
    Thank you to everyone who has replied to my thread. I'm sorry I didn't reply earlier, but I haven't got much to say right now as things are pretty stagnant.

    From the looks of things, my mother has been completely removed as my appointee. My ESA was transferred over to my bank details earlier in the month (pretty sure I've already mentioned this), and I received a letter from the DWP regarding my PIP banking details this afternoon.

    This morning I had my appointment with the social prescriber, which I was accompanied by my Nan and uncle. My Nan and uncle did most of the talking, with adding additional information when necessary. Housing options and available support were discussed, and they called Social Services to see about getting me bumped up the list for a social worker. They also offered to send me a information pack about a course I can do in regards to maintaining a property, learning how to cook basic meals, and other stuff like that - which looks like a good opportunity on paper, but I tend to avoid any scenarios where there will be any social interactions with others.

    For the time being, the waiting game continues for social services to assign me a social worker.

    deannatrois asked about ASD groups. I've only ever contacted (via email) a local Autistic Support Group about how to participate in their monthly meetings, but I never received a reply. Other than that, no I haven't.
    • Ames
    • By Ames 25th Jan 18, 7:55 PM
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    Ames
    That all sounds quite positive. Hopefully social services won't keep you waiting much longer.

    I totally understand about social situations. I have mental health problems and since last summer I've been making a big effort to get out and mix with people more. Before that I could easily go a couple of months without a conversation with anyone other than medical people, now it's only usually a few weeks and I'm trying to change that to a few days. It's really, really hard. But I know that in the long run it'll be worth it.

    The course sounds like it will be very, very useful to you. Other people on the course will have their own problems, so they won't be judging you, and the person running it will know about your autism so they can keep an eye on things. If you don't feel like talking to people then you don't have to.
    Unless I say otherwise 'you' means the general you not you specifically.
    • MyLonelyWorld
    • By MyLonelyWorld 30th Jan 18, 2:20 PM
    • 48 Posts
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    MyLonelyWorld
    I had to send off a form about my PIP address and bank account last week. How long does it normally take to get my first payment?
    • w06
    • By w06 31st Jan 18, 5:33 PM
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    w06
    As a rule of thumb it tends to take about a week for things to get to the right desk at the DWP, and then a week to ten days for their letters to get to you. And so it might take anything from a week to a month I'd say. You shouldn't lose any money though, just takes a while for them to sort things out.
    • deannatrois
    • By deannatrois 1st Feb 18, 1:11 PM
    • 5,366 Posts
    • 7,529 Thanks
    deannatrois
    Re local groups/support services. I can't guarantee there are services in your area but maybe you could try this webpage (run by National Autistic Society) and see if anything useful is available in your area http://www.autism.org.uk/directory.aspx

    I am thinking of something like my Kent Autistic Trust that not only has monthly meetings (which I don't attend) but will also provide advice and support when there are issues.

    I now have a autism specialist social worker and although on the surface I seem extremely able .., there are quite a few things I have been having issues with, without that support I probably would not be here now.

    They helped me when I was nearly homeless (in a private rental, LL wanted to sell) supported me when in emergency housing for 18 months (bit of an up and down period, council were awful, rode roughshod over me, without the support and social workers saying hey, you can't do that I would have been lost).

    They helped me enormously when I was assigned a permanent property (again council broke quite a few rules, put me in a very bad position). Because of them I have had an OT assessment and am having a shower put in the bathroom and a very battered kitchen replaced with one with some adaptations (things the council on their own refused to do). They are going to be attending tomorrow's PIP face to face with me (I have no doubt at all their support will be essential).

    They are also providing me with a personal assistant to help with some things I find difficult and attend meetings with me when I probably would just clam up rather than speaking.

    It has taken a few months to get social services involved, but now they are, their support is unbelievable. But make sure you get a support worker you can work with.
    • MyLonelyWorld
    • By MyLonelyWorld 4th Feb 18, 7:33 PM
    • 48 Posts
    • 15 Thanks
    MyLonelyWorld
    @deannatrois I don't remember if I mentioned it in this thread, but I previously emailed an ASD support group here in Wolverhampton about attending their monthly meetings but never heard anything back from them. I can always try sending them another email and hope to get a reply this time.

    How long did it take for you to get the initial assessment from social services? On Thursday it'll have been 7 weeks since they first called back after I requested an assessment. And just over 2 weeks since the Social Prescriber called them to see about bumping me up 'the list'. I know I may sound a bit impatient and I appreciate/understand that other people require an assessment a lot faster than me, but the unknowingness is causing me some anxiety.
    • deannatrois
    • By deannatrois 8th Feb 18, 11:22 AM
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    deannatrois
    Oh dear. Erm I lived in Wolverhampton and moved because of the lack of support, unfortunately. There is Autism West Midlands but that's in Birmingham.

    It might be worthwhile phoning MIND and seeing if they know of any organisations that might help.https://www.mind.org.uk/information-support/helplines/

    There is an Autism Spectrum Support Group in Wolverhampton but they seem to be focused on monthly meetings only.

    You can also phone the National Autistic Society for advice.

    I am sorry, I know this is rather disappointing. I hope the other organisations I have mentioned can give you some contacts that will help.

    I completely understand your feelings about the lack of movement with social services. I felt the same. But I am afraid all you can do is keep contacting them, reminding them that your need is urgent. Doing this did seem to help me, although I still waited at least two months, probably longer. I am just about to get some PA help. Very grateful but it has taken some months lol. Just the way things are nowadays I am afraid.
    Last edited by deannatrois; 08-02-2018 at 11:25 AM.
    • MyLonelyWorld
    • By MyLonelyWorld 27th Feb 18, 3:07 PM
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    • 15 Thanks
    MyLonelyWorld
    Hi, I'm still alive.

    I went to the Wolverhampton ASD support group, but it wasn't my cup of tea. I'm not sure if I'll go again at this point, but at least I tried.

    I finally received my PIP last week, which was backdated to January. Like with my ESA, it's probably going to be a lot of effort to get back the payments of mom that were paid to her during the early stages of this process.

    I've finally received a call back from Social Services. Someone is coming to visit me next Wednesday (7th).
    • MyLonelyWorld
    • By MyLonelyWorld 27th Feb 18, 3:27 PM
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    • 15 Thanks
    MyLonelyWorld
    Yea, a friend and his family helped me collect my stuff in the middle of January.
    • deannatrois
    • By deannatrois 28th Feb 18, 2:12 AM
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    deannatrois
    Lots of positive progress. I know you aren't all the way there but you are having significant successes. Well done.

    The social services visit will be an assessment. I am afraid there may be a wait for support after that. They may tell you how long. Just keep contacting them and reminding them you are there, waiting. Its what I did, I suspect it helped. They tried initially to give me a social worker I knew wouldn't work, but the next suggestion has worked out very well indeed. She is a bit overworked so can be quite slow, not her fault, just too big a workload.

    I am not sure how you would get back the money that was paid to your mum and not handed to you. Discuss this with the social worker, she should refer you to a vulnerable adults team to help with this (they protect vulnerable people who are being abused financially/physically and emotionally).
    • w06
    • By w06 28th Feb 18, 7:59 AM
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    w06
    well done OP, you've made huge progress from when you first posted, and sound more confident in yourself too.

    Hard and as injust as it feels I'd be inclined to write off the money that went to your mum and you didn't receive. It would be a huge battle against your mum to get that back, it's more important to look forward and sort out the future rather than rectify the wrongs of the past.

    Are you still living with your Nan? Things going ok there?

    well done again for making the big steps you have
    • MyLonelyWorld
    • By MyLonelyWorld 6th Mar 18, 10:45 PM
    • 48 Posts
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    MyLonelyWorld
    My assessment is in the morning, and I'm bricking myself. I haven't really given much thought into what I'd actually say when the time comes... I don't wish to go into every little detail, but just focus on moving forwards. I don't think that'll be an option though.

    Any last minute recommendations or suggestions would be appreciated!

    @w06 Yes, I'm still with my nan. She's willing to support me until Social Services are able to help me with housing options.
    My Nan and Uncle have contacted a local housing association, and they have a property available in my local area, but I need a care package from Social Services to apply. I doubt my case would be fast tracked to secure that opportunity, but we'll see how tomorrow goes.

    There have been several opportunities over the last few weeks where I've been invited home to visit pets and my youngest sister. My mom treats me as if nothing happened, except for the fact I have to leave. There have been a few opportunities where I've been left alone for half hour or so, and have had a bit of a snoop (bad I know ). I'm fairly certain I know where a large portion of my benefits were going before this all kicked off.

    Oh, and I have no intentions of pursuing any money from her that I was due over the Christmas period. It would just cause further upset and destruction.
    • Ames
    • By Ames 6th Mar 18, 10:59 PM
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    Ames
    Is this a social services assessment? Tell them everything, and be completely honest. It will make you feel bad and useless, but you're not, you just need help. Be very clear that you need help. Hopefully they'll ask questions so they find out what they need to know. If you don't understand what they're getting at, ask them to clarify.

    Also be clear that living with your Nan is a temporary measure and can't carry on indefinitely. That's not being mean about your Nan or putting her down, it's just being honest.

    I know it'll be hard going into every little detail, but it has to be done. Can you do something to treat yourself afterwards, even if it's just getting a sticky bun or cheap dvd or something.


    It's good that you're getting to see your siblings and pets but don't let your mum suck you into going back and giving her control again.

    It's really good that you're able to let go the money she owes you, and not getting dragged into lots of negative emotions and feelings about it.

    I'll be keeping everything crossed for you tomorrow!
    Unless I say otherwise 'you' means the general you not you specifically.
    • elsien
    • By elsien 6th Mar 18, 11:10 PM
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    • 41,371 Thanks
    elsien
    What Ames said.
    You have to be clear about your support needs because if you're not you won't get the package you need to help you move forwards. Think of it as a means to an end however difficult it feels.
    Ask any questions that you need to, and try not to gloss over things - think
    of it as short term discomfort for long term gain. The social worker should do their best to put you at ease, but if you need them to adjust their communication style, then it's ok to tell them what will help you to explain things the best.
    You'll be fine - you've got this far, so have faith in yourself.
    All shall be well, and all shall be well, and all manner of things shall be well.

    Pedant alert - it's could have, not could of.
    • MyLonelyWorld
    • By MyLonelyWorld 8th Mar 18, 9:35 AM
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    MyLonelyWorld
    To say things went well would be an understatement!

    Two social workers came from a disability team, took a bunch of information and gave information about what's available. Apparently I should be getting low mobility part of PIP, will be able to claim SDP, get a free bus pass, access to things I didn't know about, and some other stuff I can't recall right now.

    The property I mentioned in my previous post is known to them, and apparently it's a shared property which I wouldn't like. There's some newly converted flats that's in the city centre which is within walking distance of my dentist, doctors, and a supermarket. On paper it would be a great opportunity, but I'd prefer to remain in my local area.

    They're going to contact local agencies within my current area to see if there is anything else available at this time.
    • w06
    • By w06 8th Mar 18, 10:02 AM
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    w06
    Well done, you've made heaps of progress, good to hear that support and access to it is falling into place for you
    • Ames
    • By Ames 8th Mar 18, 1:14 PM
    • 17,238 Posts
    • 30,362 Thanks
    Ames
    Well done, I'm really pleased it went well. Don't discount the city centre flats though, getting somewhere close to everything you need is really difficult. And if it's the city centre you'll be close to buses which will make it easy for people to visit you.
    Unless I say otherwise 'you' means the general you not you specifically.
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