Published on 12, July, 2020
In the BBC News online, there is a story saying that the government are thinking of getting rid of PIP and replacing it by getting things that disabled people need like a wheelchair or adapting their home.
This is would be not good for us autistics. Firstly UC and ESA together dont even make a minimum wage, we should not be left under the breadline because we cannot work due to being autistic (I know some people who are autistic can work ).
Nowadays with the cost of living, the PIP ontop of those benefits come under minimum wage, therefore lots of disabled people are paying for heating and eating etc using their PIP to help them do that as the other benefits barely cover bills.
But for us autistics, autism varies each day, for example we may take the bus to a shop, but on the way back we find that all the buses are too busy or we are unable to get a bus due to panic attack so we might have to get a taxi, but we would have no time to say to the goverment we need a taxi today please pay for it! There might be a day when we need to go to a cafe for a tea to calm down, and with just UC and ESA we could not afford that.
Also with us autistics we need to have our special interests covered for example a music lesson or a Doctor Who book.
we are not talking about expensive holidays here, but some of us need a day trip to the sea side or a short break somewhere due to stress or sensory overload.
This will be especially difficult for those of us who are single and living alone. Off course couples or those living with relatives may face similar/other difficulties too.
The whole system makes me mad!
I wouldn't bank on it being just a media stunt, but I am hopeful a change of government might mean any more attacks on resources people need will be stopped before they get going.
I know people who are only claiming full PiP because of problems with drug addiction. They get it and their income is not that much less than mine and don't have half the bills. Guess what they spend it on though - more drugs.
Meanwhile, I hear of so many people who are struggling with all sorts of things and never get it because the assessors understand nothing about the conditions and problems they face, or they fall through the net of the criteria, and the appeals processes is too difficult and too stressful to get through - so, they just give up.
Personally, I only need it for one thing - the care I need around medical situations and during and after medical procedures. Can I get through to them that I find it impossible to access or manage my health care without help? No, I can't. No matter how much evidence I provide them with that it isn't safe for me to go to the doctors on my own and that my communication can completely break down in there.
Actually, I can and do work and only really need any additional "care" with that one thing. I'd be more than happy to not get PiP but have that care supplied on an as and when I need it basis. I don't relish the thought of having to strain my executive function to source it and pay invoices when I'm at my most vulnerable anyway. However, since I do not have a learning disability there is ZERO help available to be anywhere in any of the systems to help me access healthcare - hence all the professionals say "claim PiP and pay for it" - but I can't get that either.
Pheeeew! I've been turning in circles with it for years.
I rather think there ought to be some sort of conversation with autistic people following diagnosis to establish what they do need and some sort of plan to provide it. For some this will mean they need additional regular cash for taxis or carers, for others it may just be a service they can dip in and out of as and when required or an adapted bit of IT kit to be be funded and refreshed periodically. The needs are individual and so the solutions should be. As it is, so few seem to be getting what they truly need.