DM Proforma - Not entitled to Personal Independence Payment

GlasweJen

Nanny tone, if you need a long cane to get around a familiar place you'd qualify for higher PIP mobility component. Need a long cane for unfamiliar area and you qualify for standard component.

nannytone_2

i was given a 'show stick' about 12 years ago. but found people were suspicious because they could see i was 'looking' where i was going, and i do understand that.
since then no one has mentioned having a cane, and silly as it sounds, i prefer going out with someone because for some silly readon, id hate to draw attention to myself by having a cane ( i have mild aspergers and hate people looking at me... even if i cant see them doing it, i know they will if i have a cane)

i think people are also suspicious because i don't look blind.
outwardly my eyes look totally normal.

at what point would the hospital suggest a cane?
maybe my sight isnt bad enough?

i do have to have someone with me when i go out as i dont see kerbs.
i do count the number of steps that i take ( it is 245 steps to the first kerb) but it is very easy to let your mind wander and lose count!

GlasweJen

Needing a person with you on a familiar/unfamiliar route also counts (same weighting as the cane).

Symbol canes and long canes are different, long canes are more robust so you can poke about with them and "feel" bumps, kerbs and things.
I'm surprised you haven't had an assessment from the sensory team but that's where I would start.

With your AS it might not be something you want to use shopping but they are really good when walking on country paths (if you enjoy that type of walking). They are also good for going into a crowd who doesn't know you, I tend to find people are more likely to stand and offer a seat on the bus to someone with a long cane. If you're conscious about your eyes looking "normal" wear sunglasses, to be honest though most blind people's eyes look normal.

nannytone_2

i have this whole 'paranoia' thing going on about my eyesight.... or lack of it.
i may 'think' i see something, and point at it to show my PA what i am looking at. which can lead to me poking people that i was totally oblivious too. my PA will say 'sorry, shes blind' and i cringe inside
i think i need to explaim something so this reaction makes some sense.
my condition is supposedly inherited, but o am the only one with it, and because there was no history, it wasnt diagnosed intil i was 12.
until this point my dad used to say i was just clumsy, and didnt look where i was going, and the schhol opticiam said the same.
after i was diagnosed, my parents made a decision not to tell the sbhool as they didnt want me treated any different. they also didnt tell me.
it was another 6 years before i realised what was likely to happen in the future.
i accept they did this for what they thought were the right reasons, but it has left me with a sense of shame for having something wrong.
i know that feeling is wring and that im silly to feel like it, but i cant help it and i avoid telling anyone about my condition unless i absolutely have no choice. i think this is part of the reason that i dont want a white cane.

i do like to walk, and i live in a very rural area. i use a normal hiking stick and have a good prod about with it,,,, and at the same time, it draws no attention because many people also have them.

i'm aware that i probably cause myself to have a lot more issues than i otherwise would, but as i said ,,, i cant help it, it's obviously just part of my character.

i have a social worker and he gives me lots of aids to use at home, and he was also the one that sorted out my funding gor my PA. i think he hasnt suggested a cane as he knows me well and realises it would freak me out

mazza111

My great nephew went through his cane training a few years ago Nannytone. Like you he still has a very little bit of sight and describes the things he sees that aren't there... like phantom limb pain as you put it earlier. He managed it well. He's also got a form of AS too. In fact reading some of your posts, I see that you are more alike in nature too, not just your disabilities. His grandparents are looking after him at the moment, but he's moving back to his mother's soon. I really don't know how he's going to cope with all the change in all honesty.
I've actually decided I'm not going back on to that thread unless they quote me and ask me something. I've had enough of the benefit bashing and the holier than thou attitudes. Have also emailed the forum team regarding how the benefit board is going. It's putting people off from posting. It's certainly put me off asking about my great nephew.

nannytone_2

i couldnt agree more.
they seem to almost take delight in seeing people they feel are 'inferior ( those on benefitsb who are inable to work) have such a rough time.

to be honest, i dont really know how many of my problems are due to my sight and how many aew due to the AS, probably a combination of both.
i dont cope with change to well for whatever reason and in the past 2 1/2 years ive had the loss of my almost 4 year old grandson, the breakdown of my 8 year relationship, homelessness ( i was literally offered my flat 2 days before i had no home)and now all this uncertainty regarding benefits.
i am a strong person, but i'm finding it increasingly difficult to cope.
i saying all this on here, and its almost like speaking to myself ... its anonymous.
but in reality im not a talker. i put a face on and everyone thinks im fine.
but im far from it

mazza111

Totally understand everything you're saying hon x

Darlyd

I had my letter today regarding the changes coming in April 2013.

I was awarded DLA indef back in 2002, I had a very supporting GP (2 infact) plus my consultant. Now I no longer have them due to a move and not really bothered discussing my problems with my new gp etc. Bit worried to be honest but not if you get me? I just do not know how to feel and I do not know if I would care if I lost it.. I feel quite numb.

nannytone_2

its a difficult time all round really.
ok we have seen the descriptors, and we know how many poinys are beeded for each componant.
vut what we dont know is how the assesors will apply the points.
we can go through the list and see what applies to our circumstances, but chances are, these descriptors arent as straight forward as they may appear.

i said the other day that i 'think' id be quite happy to be changed over now, whatever the outcome, because it cant be any worse than the stress being caused by the uncertainty