Your helpful advice would be very welcome.
My daughter (16) was awarded enhanced for both the care and mobility elements of PIP scoring 12 points on each (minimum required). We are relieved and feel she deserves the enhanced judgement.
However, there were some decisions that were nonsensical. I.e. she was awarded 0/12 for communication. She is autistic! Communication is THE ISSUE she struggles with!
I don't know what to do now. Do I ask them to reconsider or just leave it? My worry is that if I leave it, what happens when they review it in 3 years time and they give her the same again and I didn't challenge it this time? If I challenge it, could they downgrade her on other elements and downgrade her from the enhanced rate?
Do I just write to them to lodge that we do not agree with some aspects of the decision but accept the overall outcome.
Thank you for reading.
I would ask that they consider it but if she has the enhanced rate she won't get a higher award no matter the points. Maybe write and ask if it's correct? As she is asd and does have communication problems
I got enhanced daily living and only 4 points for mobility and I only briefly looked at the points they had awarded me, and I say briefly, because like you, I didn’t agree with how they had distributed the points, and certainly at the time I applied for the benefit, I think I scored higher on mobility. However, after waiting for so long and also having an esa assessment round about the same time, I decided to just leave it and deal with the renewal when it comes.
However, in your case, I would contact a disability rights group or somebody like DIAL who regularly assist with these things and perhaps just ask their advice. This will both put your mind at rest and also give you the most reliable type of advice.
Don't rock the boat. Each assessment depends on the assessor, and the evidence provided. This can go into appeal territory.
Next time try to have more information, or demonstrate the communication issues in a different manner. You may have done that but the assessor wasn't considerate of it. Either way, if she got the enhanced rate, in 3 years just repeat what you did in the areas that scored high. Things should be fine.
I personally would just leave it. It would count as an appeal, and could affect the claim.
Being blunt, I really don't know why you'd want to appeal a fully enhanced PIP. They are as rare as rocking horse ***.
Well said. I was even happy when my esa assessment meant I no longer get more money under the new rules, but I don’t have to go into the job centre so often and I don’t have to participate in any schemes, but I can and I am. The money would have been nice but for me, the biggest stress and the thing that was no longer helping me, was going into the job centre. And I got the enhanced rate of daily living, which considering what you go through to get it and how easily it can be denied, I’m just very grateful for all of it and now I’m going to make the most of it. I’ve got at least 18 months of one to one support, paid for, via the job centre and already after just one session, it is worth its weight in gold, and more than makes up for any lack of extra money due to the change in policy. They’re giving me something far more valuable.
The WRAG thing was disgraceful considering what happened with the money. I don't know about the changes with jobcentre attendance, but if it's working for you, at least something good has come out of it.
I'd say that the way you are viewing the support situation is pretty good. If you can take something from it, you might as well.
I hope you get what you need.
Yeah, I didn’t know about the benefit of not having to attend the job centre until I turned up there after the decision had been made. To be honest, my initial reaction was that I was upset that I didn’t get the extra money, because it would certainly come in handy, not for luxuries but to help me get back on my feet. However, I quickly realised that the decision meant the hard part was over. For me, the hard part was waiting for the decision. Now that was over, I realised how grateful I was for that and I decided that even if I felt I had a chance of winning the appeal, like I did PIP, I wasn’t prepared to go through with it. They had both come to an end and I was happy to accept both conclusions.
Then when I got to the job centre I was delighted to find out I didn’t have to go there anymore because it really wasn’t helping me at all and in fact it was now hindering me, so at that point, I realised I was very happy with the outcome.
Then, I got a message from autism plus to say my application to them was successful and that this time, I would have their support for at least 18 months, even if I go back to work. And on my first visit I told her I wanted to get back to the gym and she said she will ask for funding to pay for a membership for me! And, she has come up with an absolute genius plan to help me with my eating and we’re going to tackle all of the things, one at a time.
I have great confidence in her and not having the extra money is really helping me learn about the value of money, which will help me long term.
All my reactions were genuine, but things could have worked out much differently had I been upset and angry with the decision and I had decided to fight it. They may have taken away the money, it’s a drastic change in policy, but they’re giving it back in a different way and one which is certainly helping me more than the money alone would have done. So I’m more than grateful for the help I’m getting and it’s not easy, putting it all to good use, but I feel blessed to receive it so I will honour it by making the most of it.
And I saw the gp today and although she wouldn’t budge on writing me a prescription for Ritalin, which I asked for (without an adhd diagnosis), she said she would write a nice letter to the adhd psychiatrist and she told me to make sure I go to the appointment, tell him what I want and he’ll give me the prescription.
People think I always look on the bright side and it’s not so much that I look on the bright side but more that I involve myself in what I do have control over and leave the rest alone. That way, I can make my world in whatever way I want it to be and when you’re coming from a place of genuine love and gratitude, that’s what you get back ~ more and more reasons to be grateful and in love
p.s. thank you for you support and wise words ️
If you are comfortable with it, who's to question it!
For me, the hard part was waiting for the decision.
It's not the things that are happening that bother most people, it's what might happen.
Your outlook reminded me of an old Chinese Zen story. I've shown other people this, but it does sort of sum up your situation.
Getting my diagnosis seemed like this. It's an ongoing thing, but life is falling into place, bit by bit. Life is strange, but it's neither good or bad until you give it that title.
Hope things keep moving in the direction you feel is best.
p.s. thank you for you support and wise words
I'm far from wise, but that's the trick. Being "stupid" or "wrong" can be a gift! You learn nothing from constant "success", or being "right" all the time. Sounds like you see your diagnosis as a big turning point, I think the way you are working with it is quite inspiring. Keep on keeping on!
Oh yeah, I know that zen story and that is actually how I live my life, I always have but I had forgotten about the story in relation to this situation. But you're right, it fits.
Yes, the diagnosis was literally life changing for me. It has changed my life completely. For example, now I know why I struggle in the workplace, I'll never put myself in that situation ever again. So whenever it happens, when I do work again, I'll be working for myself.
That's only one example, but there are many many more. I live my life now in agreement with my autism. It hasn't been all lovely and rosey coming to terms with the diagnosis. At times it has been sheer hell.
I've been through so many extreme ups and downs following the diagnosis and the self awareness I gained from the sessions I had with my autism plus worker, psychiatrist and the other support worker I had (as well as my own research etc) was at times nothing but humiliating and painful and I wondered why I had to even realise it as there was nothing I could do about it. But I kept on and now, it's almost as if the traits are leaving me ~ they're not, but I'm finding ways to get rid of the stresses etc and the traits are becoming absolute treasures.
And yes, I simply adore being wrong as it means I've learned something new, which is one of my favourite things to do :) And I don't mind failing. It's simply the other side of he coin to success and always leads to success if you see it simply as a learning curve.
And it seems I still have meltdowns. I had one yesterday, in the pub where I met my autism group for something to eat. But because I don't care where I am when I meltdown anymore, and because I've learned how to deal with them, yesterday's meltdown probably only lasted about 15 mins and I was worn out for the rest of the day, but so what, having to rest for the rest of the day is hardly a hardship.
So yeah, the diagnosis has changed my life completely and this time now, is the beginning of putting together everything I've learned these past couple of years, etc, and creating the most perfect life for me, with respect to my autism and ADHD.
And the autism group I'm starting, is kind of based on what I've done. Meaning, I can show others how to create a life of their dreams because I've done it and although I'm classed at high functioning, as most of us know, that doesn't mean we don't have significant differences that make it difficult to fit in to modern society, so I don't even try anymore and the quality of my life has increased dramatically just from that one decision alone.
I think the initial period was the hardest for me, but as you say once things start to fall into place with acceptance, and what you do with that acceptance, life starts to change for the better. I think accepting what you CAN'T do is as important as what you CAN do.
I had a period of trying to figure out if in certain situations, and relationships, if autism was a factor. I just gave up on that pretty quick.
There was a wise gal that posted here who once said "I have autism, autism doesn't have me". Things clicked when she said that. I'm me primarily, autism isn't going to consume my life. The whole late diagnosis thing does kind of throw you out. It's easy to get lost in it.