DLA to PiP Zero Points, Sometime you just have to vent! — Scope | Disability forum
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DLA to PiP Zero Points, Sometime you just have to vent!

Marie131963 Member Posts: 12 Connected
Well my son has Aspergers high functioning but needs prompting, Safety is a concern, Social side is a real problem, Cannot go out on his own, Won't get busses even with someone, Takes things literal, can cook but is so forgetful leaves the gas on, or has t-towels, kitchen roll over the cooker and will burn the house down one day. Bathrooms are an issue  too small he won't go the walls close in, I have a large bathroom, but school arrange for disabled but even then he will reduce fluids so not to use, we prompt to shave and dress appropriate, the real issue is getting out the shower, He would stay hours. 
I know my way round the benefits system reasonably well so when it came for him to swap from DLA to PIP I knew you need points So got the disruptors from the Autism site, Helped my son fill in the form and attend the face to face. I am fuming! got the result today NO and DLA is stopping! what a shower of liars. They did not even ask the references, 

I sort a lot out myself with my neighbour who is a social worker in child protection, and the SENCO, plus school teachers, plus I have studied a lot of courses which help. I have been to every ASD course in our area and my husband too. SO he is well supported. by us and he has 4 very close friends who escort him round school and the teachers make allowances and assist him every day.
But he is bright so passed exams its the social side. Teachers not asked, neighbour not asked how can they say no without asking ahhhhhhhhhh!

The "Mental health nurse" wrote incorrect information, and chose to only put what he can do without context such as He can cook bacon and egg, but forgot to say only bacon and egg not a balanced diet  we have to liquidise veg and disguise it in food and only when supervised,  He leave the gas on then goes to his room and does not respond to fire alarm. (Apparently lots of teenagers don't respond to fire alarms which surprised me. 
There is not one single item that she has not doctored and removed important things out  timings, safety issues, anxiety, adjustments. she even lied about his control of money. He said he askes me to buy everything so does not use money, which is true, he never sees change because I pay by card. 

He actually said if he carried money he would be frightened because someone will stab him, this is a phobia he had from primary school because they showed pictures of stabbed people and now he will not go out alone or on a bus  and he wont even get a taxi without someone with him.

The top hat was he did not show anxiety he was clinging in to me, He was not under CAHMs well he has been refused 6 times because they don't do Autism / Aspergers, even when he attacked parent with a tree branch. 

I gave a copy of the Doctors report which he went day previous and explained his anxiety, causing acid reflux and fear of people, He also mentioned my son did not sleep 2 hours maximum and was giving melatonin in the hope it would calm the anger outbursts and he could send to CAHMs  but would wait till medication review.

I tried to book the mandatory review but he has to give permission even though he gave permission last time.
 He is too Angry so we have to wait, then he will tell them its ok for me to sort.

I am sure they have a system of first time apply to PIP and knock you back The descriptors more than covered his issues but the person who must have been on a bonus never put one single thing said in the report, Times like this I would love a taped interview.

How these people sleep at night, putting half an answer so they don't have to write the negatives that give the descriptor.


Rant over lol.

Thanks for listening


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Marie131963   Pleased to meet you.

    Sorry please do not apologise for rant we do understand. As a member of this community champions team I am here to support, advise and help you.

    Please if I can advise my lovely friend @poppy123456 have tagged her has a lot of expertise and knowledge on what to do next in this circumstances.

    Please if I can advise and offer also speak to mental health charities these do accept members of our community with autism and any number of other associated problems.

    Anxiety and any other conditions.

    I used all three organisations I am going to add.




    All offer floating support guidance advice on your sons autism and welfare. This situation with benefits would have attended benefit assessment , would intervene speak on your behalf.

    Many times offer a lot of sign posting anything relevant. Looking at everything how can they help you.

    Something to consider,.

    Might not be in all areas.

    To reassure you your not alone we are here to be supportive.

    Offer compassion and empathy.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Thank you @theSpiceman, I appreciated your advice and support. plus the links are great.

     I apologise for multiple post it kept coming up with as 504 issues so I thought I was just saving a draft that was not accepted.

    Kind regards

  • poppy123456
    poppy123456 Member Posts: 31,227 Disability Gamechanger
    Thank you to my friend @thespiceman for the tag.

    Hi and welcome @Marie131963

    There's a lot going on there. My first question is are you his appointee? If you're not then is he capable of managing his own claim and money? If he isn't then i'd advise you to become his appointee, if you're not then you won't be able to manage his claim, he will need to do everything, including phone calls and speak for himself. See this link about becoming an appointee.

    Now for the PIP refusal. You say they didn't contact anyone for evidence, i'm afraid that's not their responsibility to do that, the onus is on the claimant to make sure relevant evidence is sent to support their claim. They very rarely contact anyone for this.

    When he first rang to start off the PIP claim did he ask for his DLA file to be taken into consideration?

    Your understanding of the PIP descriptors isn't the best and it really does help to have some understanding. I'd advise you to have a read of this link so that you'll understand the descriptors and what they mean in more detail.

    You/he now has 1 month from the date of the decision to request the Mandatory Reconsideration (MR) this should be put in writing stating where and why you think he should have scored those points. Adding a couple of real life examples of what happened the last time he attempted that activity for each descriptor that applies to him.

    You should avoid mentioning any lies/contradictions that may have been told in the report because DWP/Tribunal won't be interested in any of those because you can't prove what did or didn't happen during the face to face assessment. Any complaints about the report should be sent to the health assessment providers.

    Do be aware that most MR decisions remain the same, so it's very likely he will have to take it to Tribunal. Appearing in person will give him the best chance of a decision in his favour. The only problem is that waiting times are huge in most areas and lots of people are waiting a year for a hearing date, add this onto the time waiting for the MR decision and its in excess of a year.

    If he's claiming any other benefits, then they could be affected too. As well as yours if you're claiming carers allowance or the disabled child element of tax credits.

    My advice is to speak to an advice agency near you for help and support with the MR and Tribunal. Good luck.

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    edited January 2020
    Hello @Marie131963   Please can I thank you for reply.

    Understand this with mental health charities this one Richmond Fellowship the floating support would have filled it in, word it correctly sent a covering report.

    With you in attendance, I never ever fill in any forms the CAB do it or Support workers.

    You done nothing wrong but the teams and support staff are trained to assist you, all you do is attend.

    Even may do a rehearsal before the assessments or any thing like this.

    Just let you know this is something does happen and I learnt from all my long experience that it is always best to find any support. If your not happy with any association or charity helping you and it is not working.

    Say so, most charities have a duty of care. Code they have to abide to.

    I would consider RETHINK. Advocate charity represents you and your son, speaks on your behalf. Medical professionals, Doctors, care teams who ever you have.

    Many professionals in this field do not like to be critical, scrutinised and focused on if they make an error of misjudgement or a mis diagnosis.

    Had this with a Doctor talking to me all the time like a child, I am older than her.

    Bought in RETHINK, after ten minutes the attitudes changed.

    Doctors best friend anything I need or need to ask, does help.

    Please hope that helps you further and please not apologise having a rant.

    Known fact I live on my own only family friends here so you see my posts now and again need to talk have a chat about everything all about anything.

    This what the forum for.

    Wish you and your son all the best in my prayers and thoughts.

    Pleasure to meet you remember please do not be a stranger .


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • gerrys6
    gerrys6 Member Posts: 120 Courageous
    Oh god that all sounds so unfair 
  • 66Mustang
    66Mustang Member Posts: 7,400 Disability Gamechanger
    Hi I can’t help really but just to say I understand your situation as I have “high functioning” autism as well and thanks for posting, it is interesting to hear about someone else in a similar position. A lot of your first paragraph could have been describing me haha. It is indeed hard to get people to understand. They just think you are clever and a bit quiet. I had trouble at school getting the help I needed due to the autism being “high functioning”. They said my grades were good so that was that, no help for me! I think they only cared about students grades to make the school look good, not about student wellbeing.

    I agree that the benefits people try to knock you back at the start and they want you to give up but you need to carry on as it is a game of attrition in my opinion. I recently got my PIP downgraded, and like with your son there were lies in the report - to begin with I actually thought it could have been someone else’s report that had gotten mixed up. As Poppy says you have to put that to one side and focus on the descriptors, giving examples of why your son meets each one. I did this for my mandatory reconsideration and they awarded me high care and high mobility so it can be done.

    Good luck
  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Thank you Poppy, Your information is an eye opener thank you, I am not an appointee, They let me speak on his behalf in the past after they spoke to him. I will discus with Adam and see what he thinks. He angry tonight. I am surprised they don't ask for the references when they ask for it. Then it is a government department I should have realised. I am sorry for calling the person a liar I think its seeing my son so distressed. When what was said had no bearing on what was said at assessment. It was just the mandatory DLA to Pip so did not know the DLA file could be used.
    I expected him to get knocked back from PIP and I had forewarned him as I have seen the stories of other unsuccessful individuals, Where I have got emotional was getting Zero points, There was a lot of evidence. The doctors letter I gave the assessor appears ignored. I am not to worried about benefit as I am retired as I have MS we don't claim carers Hubby is partially due to a minor stroke shortly expecting to reduce hours below threshold for Tax credits therefore is going to stop if michael stops working the NHS bank or reduces his hours. I think he will do the reconsideration, I suspect he won't go through with a full tribunal, It will be too much stress for him. 
    Thanks for all the very helpful links. I do appreciate your help. 
    I will follow your advice where I can, I am not sure he will accept a local advisor, its a stranger and it can be tricky he will either be nice or very aggressive, Anyone Adam has to meet through school the teachers and I work together to prepare him like the PIP assessment even the he was cuddled into my arm. I worry for his future

    I go on sorry thanks for all your help

    Kind regards

  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hello  Mustang66
    Good to hear about you too, I think I was a bit emotional before seeing my son upset, few dishes broke in temper him not me, then he is really sorry. I had no idea how they can distort what you say, I am grateful for your advice and telling me of your experience. It helped a lot
    Take care

  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hello again thespiceman, 
    Thanks for sharing your experience that really helps.

    I can be a bit emotional at times it hurts to see your son distressed even thought I warned him not to expect to pass pip having learned of others experiences, I think it was zero points and the fact that the meeting report never relayed  what occurred. 

    The benefit does not make any difference to me I am not getting carer allowance. It was useful to my son when he has to replace items he has smashed or replace  clothing fabrics he bought then cant wear sensation wise but took labels off so cannot return, or  shoes have gone through a window a few times the tablet used fore school has been thrown in temper, he is actually a kind caring soul just gets overwhelmed at times. I wish I could solve his issues for him. The SEN and his teachers love him most of the time and are amazing they keep me up to date and we sort him together.
    I was amazed to find out from Poppy that they do not get info from the references, I wonder why they even bother asking. My son will calm down and give me a hug when he is ready. 

    It is so nice to have friends like yourself able to share and sign post me it brought me much comfort.

    It must be difficult living alone, It is good that you have friends here and you are kind enough to help people like me.

    I used to be a pharmacy technician I had to retire twice, I could not cope at all the first time and went back part time, Despite two kids, I lost a sense of who I found so much of my identity was tied up in my job then on retirement due to MS I lacked any direction. When I retired for 2nd time I started a university degree, I had to have a break along the way but now near the end. 

    I better go I need to start my assignment for the Open university last course of my BSc Hons  open degree its actually a mental health course which is quite challenging but very interesting. 

    Take care very best wishes

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Marie131963 Thank you for your reply. Just an idea please can I congratulate you on your degree course.

    Mental health charities this one know has a need for new staff something to think about.


    Please can I add further sorry to hear about your son, it is frustrating and annoying system.

    I met many like your son and many others whose have ended up being trapped on a conveyor system of denial, and not acceptance by medical professionals, the DWP.

    I was one the drama, traumatic experience of my whole life. One school of medical professionals say your fit to work and sign on.

    A year of trying to cope of applying for employment with thirty year old qualifications, older than my former support worker. To being on side-lined training course. All poignant, distressing and stressful.

    Review again says after assessment, not fit for work another back dated benefit, three years go by and guess what another review, assessment.

    Fit to work and so I go around again , this constant roundabout for ten years or more.

    Not fit and then fit to work so much hassle and worse the many of those who supposed to help got rebuffed.

    I live on my own, support from various mental health charities. Not the ones listed to you.

    You can imagine having been there the stress levels causing many mental health issues.

    Reason why I implore you to look at any of the links provided.

    The one called Richmond Fellowship, final straw see what happens.

    Met a support worker who realised what was happening to me as this came up in discussions.

    Immediate consultation with Jobcentre as now early Fifties now also ageing disability, mental health getting worse.

    Struggling addiction even though clean fears, insecurities relapses constantly plagued my conscious.

    The support worker was near to my age.  Sorted me out with DWP intervened at assessment, sent a letter in with a report.

    Still have to go to assessments but with a report on their files, every time know the decision is with them. Have been successful many times and tend to focus on them, the good ones.

    Thanks to her doing a lot and recognise that there are members of our community like your son. Met them at resource centres these are funded by Charities set up to give those with disabilities, learning difficulties and any thing else associated problems.

    A chance on doing crafts, art and anything else.

    That might be another avenue to explore because many again are not only trained staff and have similar issues but have a wealth of knowledge.

    Contacts including working with agencies and disability charities.

    Shaw trust and other employment training agencies that deal with members of our community.

    I hope this has given you some reassurance your angry and upset I know that from reading your a supportive parent.

    Why not he is your son, unfortunately in my own past my family were not.

    Which still rankles, emotive and have to deal with the missed opportunities to help me as a son instead causing me pain, depression and much mental health problems.

    Another point the reason I come on here to speak to parents, family members as a community champion of this website, forum.

    There are members like myself who see fantastic parents like yourself get denied not anything for their loved ones.

    Understand this cause me some care, concern and do spend a lot of my times on here as some of us do.  The community champion team to help, be supportive, listen.

    Please if I can add which is very important to me is to find the help and support.  For any one who applies to the forum, asking for some advice.

    Please if you do look at the links.  Remember the staff are understanding and kind, supportive. Many are parents working and have children like your son, some are former mental health clientele.

    Applied for employment and dedicate their time to help people like myself.

    Please is there any problems please contact me, I wish you all the success.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • poppy123456
    poppy123456 Member Posts: 31,227 Disability Gamechanger
    edited January 2020
    When you say "info from references" i'm assuming you mean the medical professionals and/or college teacher names? If so then no, it's very rare that they do this, if they did they for every claimant then backlogs would be even longer than they already are. If you read the front of the PIP2 form, it tells you the type of evidence that's accepted and not accepted. Future appointment dates/times are not classed as evidence because it doesn't tell them anything about how his conditions affect him.

    Does he have any Consultant reports? maybe an ASD assessment report? reports from Social Services or Community mental health team? those would be very good to send as evidence.

    My daughter also has ASD and a learning disability and she claims PIP (Enhanced for both parts)  i'm her appointee. Like your son, she never goes out alone and had one to one support at college, she also has an educational health care plan (EHCP) For her evidence i sent the ASD assessment report, the assessment report from when she was diagnosed with a learning disability and other reports from the Community learning disabilities team. They all stated in a lot of detail what she struggles with in life which was good for the descriptors at applied to her. She had a review a year ago, which was a paper based assessment, based on the evidence i sent. They also rang and spoke to someone from the Community disability team, which is rare but it can happen.

    The most important thing of all is the information that you give them. Using real life examples of what happened the last time he attempted that activity without help/support.

    For example. you mention him cooking, which comes under the activity preparing food. You mention He leaves the gas on then goes to his room, does he leave pans on the hob and forgets about them? What about using a knife, can he does this safely? What happened the last time he tried to cook a simple mean using fresh ingredients alone? Does he need assistance from another person? If so then why does he need that assistance?
    Also remember that carrying things around the kitchen and using an oven are not part of that descriptor. They only consider waist height.

    You also mention balanced diet and you have to liquidise veg and disguise it in food. This is not part of any descriptor and no points would be scored for this, so it's irrelevant information. The descriptor "taking nutrition" refers solely to the act of eating and drinking and so the quality of what is being consumed is irrelevant for the purposes of daily living activity 2. Therefore, if for any reason a claimant elects to have a bad or restricted diet, makes dietary choices or chooses to avoid certain foods as part of dietary requirements, they’re nevertheless ‘taking nutrition’ to an acceptable standard and therefore will not score under activity 2.

    You also mention his money and He said he askes you to buy everything so does not use money, he never sees change because you pay by card. This is activity 10 "making budgeting decisions" not wanting to use money because he's scared isn't part of this activity and this is why you really do need to have a read of the link i posted above.

    Lots of people claim PIP first time without any problems at all but we rarely hear the good stories. Myself and my daughter both claimed PIP first time with no problems. People who post here, successfully claimed it first time. We will only ever hear the bad stories. Your assumption that they receive a bonus when people are refused is not correct, they don't receive bonus's for that. The reports they send DWP are recommendations, a HCP doesn't make decisions.

    The face to face assessment he attended is just part of the claim process, where a claimant will need to verify what they wrote in the form, as well as additional information and the observations that take place.

    The question you need to ask yourself is, can he manage his claim himself? is he able to ring DWP when there's a problem? Would he be able to answer the phone, if they rang him for anything? Is he able to manage his money without support? If a person is incapable of managing their own finances due to a physical or mental health incapacity and cannot cope with claiming benefits, paying bills or managing money they may need an appointee to provide help. If so then i'd advise you to speak to your son and if he agrees then ring DWP/PIP to start the appointee process off.

    Hope this helps.

  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hello Poppy Sorry for the delay in getting back to you, My son was very upset, then waves of anger, Today several dishes have been smashed but at least he never punched the wall this time.

    I had to do some research and a tutorial and start my essay. Life is busy just now as mum broke her arm and she needs help too.

    Thanks for all your information, I have read the link it has much more information than what I have seen before thank you. It was good to hear of your experiences and about your daughter.

    My Son had explained in great detail all the problems he has with pans, burning himself and how he cuts himself with the knife and is clumsy he has a phobia of knives since he dropped one and it cut his foot.. He explained he cant cook without some one with him  and why and that does not cook from scratch. He only cooks with his sister or his dad. 

    At the moment he wants to throw in the towel he is so upset.

    I sent at least 18 letters from the Psychologist and hospital consultant, and the SEN Unfortunately he had not seen the hospital for 18 months because yet another consultant left. Apart from his surgery last year which was a different issue, I sent school action plans and I sent in certificates of the courses we attended from Liverpool council ASD training, I wrote a long letter explaining that we managed a lot of issues with the help of a social worker and help from the training whose speciality is child protection, Plus how we communicate with My sons teachers and we disuse issues and devise plans to minimize the out bursts. He explained he could not go out alone and many other things but it all appears to have been ignored.

    I guess I have to wait until he is ready to discus, He will need a few days to process what has gone on.

    Its not the money I am concerned about it being knocked off the system which may be an issue when its time for a working life. I am very worried he wont get a job, there are not many places a vacancy will be with someone he knows to be with him and taking him to or from work sooner or later is going to be an issues we are getting old and my own health unpredictable, I live in fear of the day I cannot go he wont get a taxi because it would be on his own, Tried social stories and motivation but nothing works. Its weird how he can be bright academically and so needy socially and in the kitchen.

    Hopefully he will be calmer tomorrow, or later today now. I can hear him pacing the floor he just does not sleep.

    Thanks once again

    Kind regards


  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hi Gerry6
    Thanks for your kind comment, Its one of those things I will be happier when my son calms down. He will after he has processed it all. He now says he will throw in the towel but I do hope he at least puts in to have it reconsidered. Its not the money its being recognised by the system when work days come. He may not be able to work or only cope with short hours I am medically retired so I do worry about his future. The money did help with the broken plates, windows and wall repairs. The cloths he would buy and then find could not cope with the texture but took labels of so no return, Or shoes that look good but next minute go out the window. My NHS pension can only replace so much. 
    Happy days
    Take care

  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hi Thespiceman, Wow you have been through the ringer a fair bit, but wow you have a lovely spirit of warmth and giving despite your experiences which have made you so rich in knowledge and compassion. 

    You demonstrate my concern by my son loosing his benefit, its not the money its falling off the safety net  knowing bullying and intimidation will follow because they will look at him and not get aspergers and the social side, the fact he cant go out alone and anywhere he does go he has to be handed over to someone he knows. That he wont cope with noise and will shout or fall to the floor in a ball. He is really bright this makes it hard because he should be able to do the things other teenagers do but no he cannot stand any visitors to the house, or if you move something there is hell to pay but on the other side he is very loving. Needs no sleep but I get disturbed sleep due to  him standing by my bed in the middle of the night like a maniac, This is to ask for permission to use my disabled bathroom because its bigger and he is claustrophobic. I wake up very easy I sense he is there. I have told him a thousand times he does not need to ask but he always does anyway. Its just as well I love him.

    I am hoping to do something with a charity once my degree is finished, I need to check if I need some placements to add on to my counselling qualifications, I did most of them but the last 6 months I could not afford the car parking fees so stopped. I have worked with many different types of people over the years, In many environments, I even trained in some of the holistic therapies, I know there is so much need out there and no resources so it will be good to give back. I have been in the territorial army, and done youth work in the church and my pharmacy career gave me incite to all sorts of issues. I like people and care so it seams the best use of skills to use them. I will see what is the best fit after graduation. Tomorrow I plan to spend the day sorting out more of the assignment it takes about 10 days by the time its written and referenced and then go back and forward changing it. I am not a fast worker but I am enjoying it, When my assignment goes through I will have reached 50% of my course I always find from now on time flies. I better go time is marching on

    I just wanted to say you are an inspiration, keep up the good work, your witness is amazing.

    Take care

  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Marie131963   Thank you for reply.  

    Thank you for kind words just a gentleman of the old school seen heard know your story met so many a lot of the time.

    Who are like your son, I do have this Christian belief that every one who ever they are has the skills, abilities to do any thing, talents and anything else.

    Have the knowledge education to continue to cope with what ever disability, illness or condition have.

    My thoughts views opinions are you mentioned problems with visitors and the same time working, the issues are then, how he is ever to cope with stresses, strains of a work place.

    It is fine to have these ambitions for your son, but there as I have mentioned before coping methods, strategies and certain aspects of support many charities have instilled in their own programmes.

    All staff are trained, knowledge, experience of all mental health conditions, autism, Asperger's whatever they can deal with it.

    The issues are this in my judgement and opinion the more support he needs to move and cope they will provide, I also do think another aspect of the problem is finding simple solutions addressed with his problems.

    I have met those with varying degrees of mental health who do have a structured life, the continuous need to be doing the same thing do not like changes, adaptions.

    I am one actually my routines are structured only because being on my own, find it easy to remember but do adapt. if I have to.

    Used to when enrolling charities have a stubborn, defensive and often do not like this, any suggestions from some one who is telling me something do not ever want to hear.

    Now embraced everything, listening a skill, and adapt much as I can learn and educate myself.

    Please do you want your son to have a life of normality and life he can cope with his problems and issues.

    Talk to some one like the support workers from charities often give him the opportunities to continue progression of his life, being and offering coping methods.

    Understand has all these problems, issues with varying degrees of social and home life.

    I used to work as a volunteer for MENCAP various branches, met those Parents at breaking point with their loving sons or daughters.

    Having a combination of learning difficulties, autism, and mental health issues a huge stress, strain every day.

    Had the patience, tolerance and coping those who children many adults of teenage and older having violence, abusive and other behaviours associated.

    I used to have some one like your son at my home, his Parents both staff members of MENCAP branches .

    Could see the those who like me how I coped.

    He the son would arrive at my home, teach him simple one to one tasks with much respect and kindness , although in between had violent out bursts. Calmed down after a few weeks, became a friend if you can call me that.

    Unfortunately as in any charity there those who do not like volunteers dong the role the staff should be doing, so jealousy insecurity rears up.

    As a volunteer had permission for doing this getting these fantastic adults with lots of misunderstandings but have intelligence I can see others did not.

    Staff members some hardened insensitive forced me out as a volunteer.  One staff member been their in one branch a long time intrenched and stubborn, can and did not wish to entertain the young gentleman at the time.

    Was not worth complaining just moved away.

    I wanted to add this why I still do this, also a lot of volunteering in mental health charities and as I do in the community meet a lot of members who lack social skills need guidance.

    Not thick, slow or stupid or lack intelligence every one has some thing they can not do or attain or not understand, see this.

    Used to be one, my Mother the main problem the bane of my life, there are parents like my Mother.

    Want to mistreat, not only be critical but demeaning and have a stream of comments that cause negativity, depression, other mental health.

    Since leaving home went to a College for members of our Community do exist another line of enquiry.

    Worth looking at meet those like your son and me disability plus lots of others with rare conditions, misunderstood illness.

    At the end of their tether, mental health and addiction, some had parents like mine.

    Used me for a feed bucket, must add met a lot of those as well.

    Distressing to say had a job and business used bullying and many other traumatic ways to use any thing I earn to use as their own money, no one knows more than me. Mentally damaging how that is.

    Parents using sons, daughters benefits as their own money having control over, into their bank account. Child now an adult penniless offered pocket money.

    Understand few of those found their sons getting and losing their sanity.

    Ended up at this College and learnt to change used the Staff to help them, had to make own bed and other duties.

    Ingrained policy help those who like your son, often met a lot of students never had to do anything.

    You be at breakfast table eating and a student would appear in night wear attire. When is breakfast trolley coming around.  I had to escort him to canteen.  He had never choose anything before.

    Mother or Father did it, now have to met me, I shown them either in my home when I left, or in College with permission from the Staff.

    Ironing lessons, washing machine lessons, how to shop, make lists, plan and budget, other social activities.

    Cooking lessons, plan, make create a simple meal using not the cooker does not have to be.

    Used Slow Cookers or Microwave. Then slowly when confident use Cooker but be there for supervision.

    I have a Oven but rarely used it, used ceramic hob, or Slow Cooker an easier way to make a meal. Buy toaster, kettle shown them all. Simple methods..

    Using speaking phone, bank accounts, any thing benefits.

    Lifestyle including cleaning, being clean and using organisations like I have mentioned before.

    Understand I had to learn myself.

    I do think that if you wish to for your son to progress and maybe look at employment then you need to think about the links provided or anything I have said.

    I am sorry what has happened but the situation is happening day to day every week we as community champions .

    Encounter the problems your going through every day, do our best to be supportive, offer a lot of advice and guidance.

    My lovely friend @poppy123456 does so much for the members like your son and the families who come one having problems like this.

    If you do contact any of the organisations, links they would actually offer a lot of incentives for your son to cope.

    I am a caring, concerned gentleman and do think as time progresses the issues and problems may get worse.

    I have to admit this, a story I met a colleague in a job I was doing he had autism and other associated all he did all day was write names, addresses numbers on files.

    For fifteen years or more in a hostile environment of an office. The attitudes stank towards me and others.  Him especially his work colleagues hated him given any chance.  

    Abuse, control and intimidation, most days were witness seen it. 

    Places claim to employ a lot of members of community in reality use them for slave tasks.

    I did attach letters all day on files, had loads of qualifications since left there but then was made to feel not wanted, ignored and abusive from staff.

    Worse bar at the premises all full of us disabled colleagues and more times spent getting drunk another reason why alcoholic, probably.

    Not every one is like pleasant, lovely polite to work with. Many consider members of our community taking a job from some one who is not disabled or even worse verbal assaults.

    These from parents of children who are insisting do not want you in any place near you.

    So much bullying and my concern is your son here because I ended up being violent and not like that at all.

    When some one starts rubbing up the wrong way by the way no one is bothered comes to your rescue, only options resign and move on.

    Another reason contacting these charities have supported employment opportunities, with some one from the charity or sign posted to Shaw Trust who deals with members of our community.

    Worth a look.

    I do want to sound negative but had to speak to you. The positives are he will succeed with everything, be happy be and get the support he deserves.

    As long he does  understand that, frustration anger can be controlled I am prove of that.

    No one likes a angry frustrated man.

    Had Mate Crime constant life time bullying and control.

    I have so many positives done so much would fill a page after page of an exercise book.

    All dues to various charities organisations I used.

    I hope you understand my concerns, care.

    Please have a think, am here any time.

    Happy to talk to you.

    Please take care.


    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • gerrys6
    gerrys6 Member Posts: 120 Courageous
    I’d do the mandatory reconsideration on his behalf yourself I think that’s a very unfair decision. Citizens advice are good at helping with that I’d go see them soon as you can and ask them to help with the appeal . They will do all the paperwork I found them so good when I had to appeal I’d have been lost without them and I’d probably have given up because it’s just too daunting isn’t it. Stick with it get them to help. Let me know how you get on. 
  • Marie131963
    Marie131963 Member Posts: 12 Connected
    Hi Gerry, I am not the appointee so I cannot without his permission. He needs a few days to process the situation. I will give him a day or so and see if he will see the benefits advisor from church as they are CAB trained. Fingers crossed he will at least try for mandatory reconsideration. I am going to ask my neighbour for a statement as she is a social worker and helps me with my son. Thanks for your kindness and sharing your experience.

    Take care



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