Published on 12, July, 2020
Just wondering what people's experiences are in the transition from dla to pip. My son has recently turned 16. He has ADHD,asd,asthma,rinihtis and eczema all diagnosed. He was awarded DLA middle rate care & low rate mobility 4 years ago. He is still under Cahms for help with his ADHD and asd. He attends regular appointments with Cahms to help manage his condition and to review his medication. He is also under the hospital paediatrician for his other conditions with regular appointments too. After receiving a letter stating he would need to change over from dla to pip, I his appointee filled in all the forms with all relevant information, consultant letters, Cahms reports and care plan etc and sent them off. I including lots of relevant information explaining how his condition effects him on a day to day basis, what he finds difficult, what he needs help with as well all all supporting documents. I sent copies of all medication he takes including times, amounts, frequently and the length of time it takes me to help him with this. It was decided by Dwp that he needed to have a face to face assessment. The date arrived and I was dreading taking him. It took me a week to actually get him to agree to go. He kept refusing and having outbursts saying he wasn't going. We managed! I got him there! The assessor came across very abbrubt and invited us in. From the onset she made us both feel very uncomfortable. She asked my son several things about socialising, meal prep, washing and dressing,medication etc. She answered the majority of the questions herself and didn't give my son chance to answer them himself before trying to put her own words into his mouth. He told her he didn't go out & wouldn't go out on his own due to the physical emotions he encounters. He told her he become very anxious and looses all concentration if not accompanied by myself or a close family member and wouldn't go out at all if he had to go alone. She asked about preparing a meal,he said he can't do it because he would set the house on fire and has previously burnt himself. He explained he forgets what he's just done and always needs supervision. He would certainly leave the pans on & would wonder off totally forgetting there on! His sensory issues prevent him from touching food, he says uncooked food makes him feel sick! Touching and seeing it. She asked about washing and dressing. He said he can wash and dress but would choose not to do it and needs prompting by mum to do so. I explained I had to choose his appropriate clothes for the day & had to put these out for him to dress in the order they needed to be put on.He often puts things on inside out, twisted or the complete opposite to what he's been given. Washing is a task! I have to literally stand repeating myself several times and experience extreme out bursts for him to get washed/showered otherwise he wouldn't do it. The bathroom then looks like a swimming pool afterwards. Medication question, he said I have to do his mess otherwise he wouldn't take them. I agree he wouldn't or he wouldn't take them correctly resulting in overdose or not taken at the right times. He was asked about engaging with others (a big black area for him) he told her he finds this extremely difficult and this causing his anxiety to rocket. He will only engage with reassurance and persuasion from myself or his dad. He will only participate if we are with him until he becomes comfortable with the other person. This can take several visits beforehand. He was asking what he was doing education wise. He replied mainly with one word answers College he replied, she asked what course, he replied accountancy. Straight away she replied oh so you are able to make your own budgeting decisions I take it & should also know if you've been short changed! Arghhh...again filling in her own answers! Yes he is high funtioning, he is very intelligent providing he has the correct support. That doesn't assume he can make reasonable decisions in his best interest! It doesn't take away the fact his anxiety linked to asd prevent him from fulfilling certain tasks! Nor does it take away the fact he constantly looses money! actually checking his change when his anxiety levels are already through the roof due to the fact he's in a shop having to 'engage'? An accountancy course is simple that.. a course at college! It's nothing at all to do with his reasons for making 'his own' budgeting decisions in my opinion. I simply can't get my head round it all. We haven't recieved a final decision yet, however we have recieved the assessment report & wow! I am speechless, upset, angry and frustrated. It all lies all the way through. It has so much conflicting information it's unreal. Basically he has scored 2 points! The report states all the above and that he can manage medication or doesn't take any? How when I myself have to manage this for him? He scored 0- points. His medication are controlled drugs that's he's not capable of managing! He wouldn't take them, would take not enough or take too many! He can follow a familar or unfamilar journey? 0-points...how? He doesn't & won't go out alone? When asked what he would do if he became lost, he said he'd go dispare & panic, would phone mum? He would end up in a dangerous situation due to his anxiety levels. He told her he can't stand public transport ands will only travel in a car with a family member. I literally have to take him everywhere and make sure I'm there at least 10 mins before finish time to pick him up! To & from college etc. It says he can make a sandwich so scored 0 points for cooking and preparing a meal? He can't prepare a meal nor a sandwich himself. He would eat dried bread first or choose to not eat all all. The assessor wrote he looked clean, smartly dressed & well kemp. Yes he did I agree, because I'm the one who makes sure he is. He wouldn't be if it was his own choice! What am I suppose to do? Let his health and hygiene go to pot to gain points? Utter joke! She wrote in one paragraph he stared at the floor and didn't make any eye contact, poor rapport looked tense yet scored 0 point on engaging with others and communication? Washing/ dressings scored 0 points? But I have to make sure he washes, dresses, what he wears etc? Engaging with others face to face 2 points? He stared at the floor, answered with one word? I was present with him. He certainly wouldn't have been there if I wasn't with him let alone engage? I showed the assessor his Cahms care plan from the week before, none of this is acknowledged on the report. This was from his Cahms appointment the week before his assessment. The plan implies he was suffering from high levels on anxiety reflected in increased ite ability/ aggression and repetitive behaviours possibly triggered by transition from school to college. It was noted it was not easy to engage in conversation. It was recommended for support in college to identify the best provision perhaps smaller groups, less socially challenging more nursing and less sensory overwhelming considering his needs, in particular relating to his asd and ADHD all this was ignored! Really sorry for my long essay but I am at my wits end! Any help, thoughts or suggestions would be greatly appreciated. I am so shocked at this report. My son lives with me & day to life is so hard. Without the help and support from me and his family I really hate to think how he would manage.
Thanks ever so much MsP Your reply is much appreciated.
Over the last few days I have managed to gather so much useful information from all you lovely people, this I thank you all for!
As yet we still…
Thanks ever so much BlueRay & NAS39248 Your reply is much appreciated.
Over the last few days I have managed to gather so much useful information from all you lovely people, this I thank you all for…
Sorry, I forgot to mention the home visits.
I was going to request this, however I thought I'd push him & get him to go and I was so pleased with myself for managing this. However I really Wish I hadn…
Hi Kerry, I’m so pleased you got all of that off your chest and onto the page, because that’s where it belongs. It doesn’t belong in your head.
Without going in to the finer details, when I first applied for pip, I got zero points. And at that time, I was in a worst state than I am now and couldn’t get it together to appeal. So I tried again.
Again I was given zero points and the report read very much like your sons. And my reaction was very much like yours, which helped me with being more determined this time to appeal.
I was late getting my request in for a mandatory reconsideration, but they accepted my reason as to why it was late ~ I’m autistic, I find these things extremely difficult.
I appealed, and when I got the appeal papers through I couldn’t understand them and I had noticed a DIAL centre on the way to the shop I go to. So I called in there one day and asked them for help. They were really great, I highly recommend them. They will look at your papers and tell you if you’ve got a chance. I recommend getting them on board ASAP because the support they gave me was tremendous and it really did take a weight off my shoulders.
I had my appeal a couple of days before Christmas and was awarded the enhanced daily living component but only 4 points for mobility. The appeal is supposed to be based on how you were when you applied for it, which was a year ago, but I was by myself and I did my best, so I accepted their decision. However, I can see how, although they were ok with me, if I had been a lawyer, or had one speaking for me, I could have got the full award.
But I’m happy with the outcome. The guy at DIAL prepared me well for the appeal. He thought I should take somebody with me, but the truth is, I didn’t really have anybody to go with me, and I felt I would be more honest if I was by myself.
If the decision comes back unfavourable, I recommend applying for the mandatory reconsideration asap, don’t waste any time, then get in touch with DIAL or somebody similar and get some support.
Most people win the appeal, which is encouraging, but it’s often a long wait for the appeal and I definitely recommend getting some support.
All my friends who went to appeal, won their appeals.
You can also subscribe to benefits and work. I did. It’s an excellent resource looking at how the whole process works and it gives all the updated news and info. Here’s the link www.benefitsandwork.co.uk/
Hi BlueRayThank you ever so much for your reply it is much appreciated.
Its been 7 weeks since he had his face to face and all we've heard was that they have the information required to make a decision.
I called them for an update as I knew with the body language of the HCA she was going to go against us.
He tried to answer all questions himself, however I needed to simplify them for him. Every time I did, I just got a funny look and the points I added to the answer were ignored. If I did the question answer myself, she repeated herself to my son for him to answer! Very rude!
I requested a copy of the report from the DWP and was advised no decision has been made & should be done within the next week.
The HCA who carried out the assessment was a nurse. I, myself been in the same profession can't come to terms with how she think the report is appropriate and relates to my son.
I have since contacted ATOS to log a complaint regarding the whole situation. I am awaiting the complaint form from them too.
I will await the dreaded decission letter and follow the advise you've given. Thanks ever so much!
sorry to hear about the troubles you've also had with the HCA and DWP. As if it's not already hard enough for us having to either live with conditions ourselves or look after someone with difficulties. It's really upset me has all this.
I will follow the advise/links you have given and hopefully (finger crossed) we can get the outcome he deserves
Honestly, I don’t see it as trouble. I’m just so grateful that it’s even available. It is down to my autism, that makes the situation difficult for me so all I need to do is work out ways that will make it better for me. For example, now I have the diagnosis and I understand myself better, I am learning to plan and prepare for things such as the assessments. I see it as an opportunity to find ways to look after myself better. So I don’t see it as trouble.
The nurse is simply doing her job. They must have some kind of unwritten rule that says they have to refuse the biggest proportion of people as a way of not paying out so much money or something. Don’t take it personally although it’s perfectly ok to complain etc. Use it as a learning curve. And look at what you achieved. You managed to get your son to the appointment and he was even able to answer some of the questions, which being autistic myself, I can tell you, is very difficult.
So it sounds like it was a success on your part and that’s the only part you have ultimate control over and the only part you need concern yourself with. You did an excellent job in a very difficult and emotive situation. You can relax now, and if you need to go to appeal, you can deal with that at the time, with some forward planning.
I’m sure you’ll get it and like other people have said, the appeal is not half as scary as the thought of it.
As blueray suggested if the decision comes back unfavourable ask for mandatory reconsideration. You have explained the situation in your post very well, break it down with your explanations and it should be fine.
I thought my pip assessment was a disaster as I wouldn't do half the physical things asked as I knew it would hurt and the assessor seemed very put out by it but I did get my award.
Not sure why all the smiley faces have appeared lol
Sometimes if you put in a smiley face, it automatically puts in it other places as well. One of our more techi people would give you a more accurate explanation but I’ve noticed that sometimes when I put in a smiley face or other little thingy, it shows up in random (not random) places in the rest of the text!
Maybe it’s an expression of how you’re feeling today? Maybe you’re just feeling extra tickatyboo today ️
As yet we still haven't had the final decision, so again I called them today to be told the same 'no decision has been made as yet'.
Its been pure torture! Today he started back at college after the holidays. For the last week he's been so uptight and anxious about returning. This is not uncommon & we have this after any break in the term. He hates change also any change to his routine.
It took me 40 minutes to even get him out of bed this morning. The morning started at 7am and I managed to get him to college for 09.15.
12.30 I had to go pick him up, take him for lunch then have him back in college for 01.30. He won't stay at college for lunch as he finds it too overwhelming, loud and busy.
Id to then pick him up again at 3. He's come home in the most foul mood ever! I asked how his day had gone and all I got was 'what do you think'?
Hes snapped at his siblings, shut himself away in his room and this is our struggles almost everyday. Yet the people who do the face to face see them for 30 mins and come up with these reports. I really wish they could jump in my shoes and take over my day for the day! I'm sure the report certainly wouldn't be scored as it is.
Around working with him, his emotions & difficulties , keeping a family, having a Job and every other stress a day can bring I'm now ready to give these my best shot too.
Its going to be hard, I know it is, but I will try. I feel with all the advice and strength you've all given me I'm praying this is just another milestone we have to over come!
Im ready and waiting for this decision letter and all prepared to appeal. I plan on visiting the welfare rights, mind or scope to help me fill in the appeal.
All your help is much appreciated & I will keep you all updated.
As yet we still haven't had the final decision, so again I called them today to be told the same 'no decision has been made as yet'.
You do know you’re super woman, don’t you? And your boy did great today. I had planned to start my new routine yesterday but it never happened and it never happened again today either, but I did leave the house today so I’m super pleased about that. I’m not sure I’m glad I had the two coffees though! Lol! I’m glad you’re going to get some support with the appeal. They didn’t have to do much for me, I had already submitted the appeal papers but what they did was brilliant and it was especially good for the reassurance I got, the really good info on what the appeal process would be like on the day and just going through the paperwork for me. It felt good to have someone on my side.