Firstly, apologies as this post could be a bit rambly, but I think I need some help, advice and maybe a little rant.
The background…
I am a carer to my son, Ollie, who is 22. He was diagnosed with autism when he was 2 and a half, and with dyspraxia when he was 10. We successfully claimed for DLA when he was 3, and each successive claim was also awarded at higher rate care and higher, then lower rate mobility. He attended mainstream school, where he spent part of the time in the resourced base, and the rest in regular classes with a one-to-one. After school he spent two years part time at college on a course for living/independence skills. After that he had a short, part time placement in a cafe, run by Enable Scotland, although he wasn’t able to help serve customers and spent all the time behind the scenes, learning more life skills. He has always needed help and support in every area of his life, physically, mentally and emotionally, from myself and my husband.
Fast forward…
A little while ago we applied for PIP. He was sent a letter with an appointment for an assessment in a centre but after calling the centre I requested a home visit, which was agreed to without issues. Cue high levels of anxiety from then on for Ollie. But, for some unknown reason, the assessor didn’t turn up so I jumped straight on the phone and was given another appointment. I prepared him (again) as best as I could and the appointment did seem to go okay. Not too much hassle and I thought we gave the assessor a good, clear picture of Ollie’s many difficulties.
Present day…
I received a copy of the assessors report in the post. Well. Im still in a state of shock. The report is riddled with lies and almost everything we said has been twisted. It’s safe to say that the final decision will be the worst possible outcome - zero points for everything. Here are some examples… The assessor asked Ollie if he could put food in the microwave and he said yes. And he can. But he has no idea what to do next. He can’t understand the instructions and would burn himself on hot plates. He needs supervision when in the kitchen. Therefore he cannot make his own meals… but the assessor reckons he can because he can put a packet in the microwave. She also thinks he can budget and manage his money perfectly well… because he sat a maths test at school, and knew that £1 minus 75p was 25p. She also thinks he has a perfectly good level of concentration because he can play a computer game. So obviously he can concentrate on everything else. He can’t. And the lies… wow. She said he spelled a word backwards. She never asked him to do that. She said he remembered three words when asked. Again, never asked to do that. She said he followed three step instructions. Guess what. Never asked. In fact we stated that he CAN’T remember more than two instructions at a time. She said his long and short term memory was fine. We told her they weren’t. She stated that Ollie is capable of planning an unfamiliar journey, and making it, alone. We had told her the exact opposite. She said Ollie saw her out of the house after the assessment. He didn’t, I did. And I’m missing out so much more.
I know it could be a few weeks before we hear the final decision, but I’ve started planning for the MR already. I’m going to the CAB tomorrow, I have a welfare rights officer phoning me in the next few days, my husband has emailed our MP and I have a bundle of notes ready to draft into a letter for the MR.
I would be grateful if anyone can give me more tips at this stage.
One thing I am desperately worried about is the tribunal. There is no way on earth that Ollie could cope with that. Is it possible for me to go alone? Or do they really need to see my son in a massive amount of stress leading ultimately to a meltdown?
Im so fed up it’s ridiculous. I hate the fact I may have to put my son through something so distressing. The guilt is terrible.
Anyway, that’s me. Thanks for hearing me out but I’m not sure if I feel any better…