Help! Dia to pip nightmare

Hi,

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 Kerry

  • 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't bothered now & made them go out of their way to come to us.

    In future I will be requesting we have home visits.

  • Keeping our fingers crossed it goes more positive for you. 

    Have you heard back with the decision yet? 

  • Thank you!

    No, still not recieved a decision yet. All they keep saying is due to a back log they are behind with claims. I'm really keeping my fingers crossed, however I don't think it will go in our favour.

    In the mean time I have everything ready to appeal as soon as the decision arrives.

    I will keep you all updated x

  • Just thought I'd give you all an update on our issue.

    Today we've recieved his decision letter and The outcome is positive yippee!

    Hes been awarded standard living and lower mobility. 

    After the assessment and reading the assesors report I truly thought we was going to be having to challenge their decision.

    The letter says he scored 8 points on care and 10 points on mobility. The care part, I do disagree with the scores as some parts he hasn't scored any points on areas which he should have.

    I am so relieved this is over with for the time being, however would anyone advise that I challenge the areas in which he should have scored or is it better just to leave it as it is? I don't & wouldn't expect him to get any higher payments of pip it's just more to the principle of the fact it's annoyed me as it's inaccurate.

    My advise is to anyone who's put in the same position as us is to just try not to worry. I have and it's been awful! I thought everything was going bad for us.

    Id like to thank you all for your help & advise you have all given us recently X

  • That’s great Nap, and my reaction was the same as yours, thank god it’s over. 

    And it’s funny, because I had two outcomes I was waiting on. One was esa and the other pip. One I didn’t get the award (esa) and the other I did, but in both cases, I was just so glad it was all over and I accepted both decisions. 

    Neither was wholly correct, but in all fairness, I was so glad it was over, that I decided I was happy at that and I accepted the decisions, and I’ve been happy with my decision to accept them both. And the esa thing turned out to have surprising benefits that I wasn’t previously aware of so it might of not worked out perfect, but I’m happy with the end reault. 

    The advice is usually, if you got a reasonable result that you’re happy with, leave it at that. You have to weigh it up against the unavoidable stress that always comes with it, because of the nature of the beast. We know the systems not perfect, but I certainly consider myself lucky, and I’m grateful that at least I got something and already the pip money is helping me a great deal. 

    I’m really pleased it worked out well for you.