DLA turned down - don't understand why?!

formaldehyde_perfume

ash4becks wrote: »

iam in the near same situation iam 24 and dont drive either and live about the same distance from town , i no it sucks not to have you inderpendance when your body decides to give up and i get by just but i live on my own only diffference, iam just to stubbon to use a stick or scooter yet

i no you can get the self propelled chairs that was the thought i had and possiblely to get a bus into town bus does depend on how good to buses are to get on and of and how well you are

i no in my area the motablity charity have escorts that will go out with you , are volantry and meet you of the bus or taxi with scooter or chair

have you had a OT assesment they might recomend you for a electronic chair and other stuff to help in house, they might no of places that sell second hand scooters cheap, i dont no if your in the north east but local charity shop to me is selling one for £400 atm

i no what its like to be trapped in makes depression worse i hate it i had almost a month in bed when it was fab outside and hate it even more as i have my dog to look after and i love nothing better than to be outside watching her play

There one bus in to town each hour from where I live now (that's if it turns up, and most of the time it's at least 15 mins late) but I'm moving in a few weeks and it is the only bus that passes through Ely, every other bus starts at the market in town. I will be living with my mum as my parents are divorcing and there isnt anything in the area of the bus which she can afford which is also suitable for my mobility needs (there is one 70's house but it's badly laid out and I bumped into walls twice whilst we were looking round it)

My elbows are pretty weak so it's unlikely I'll be able to self propel, I went to America last year and there was a brand new natural sciences place which a quality wheelchair and good flooring, I managed to self propel around there with little problem but then we went to Disney and if they hadn't have had a scooter we would have wasted the whole day as I gave up self propelling after a few minutes and my mum simply didn't have the strength to push me (we've since found out she's probably got arthritis in her knee) Luckily I coaxed my dad in to coming to Universal with us as they didn't have a scooter option so he pushed me all day.

I don't want someone to go round with me, to me that's not independence, I might as well just wait until my mum gets home and go round with her. I want to be able to go to my local corner shop to pick up some bread or milk or just for something to do, go to the rental shop and get a movie if there's nothing on, spend an afternoon down by the river with the dog... All those sorts of things would be possible with a mobility scooter.

I will talk to the CAB about it all tomorrow, see what my options are. I have some savings but they're very precious so I need to work out what is the best thing for me before I use every last penny I have to get a scooter. A second hand scooter would be good but I weigh a considerable amount and the paths round here are very uneven and quite narrow so I need something quite robust and I think it's unlikely that one suitable for me would be available. I have been spending some time looking at different models and prices recently, to get an idea, but the area is vast. Also, I don't know the running costs of a scooter, but hopefully I'll be awarded DLA and that will pay for it.

ash4becks

formaldehyde_perfume wrote: »

There one bus in to town each hour from where I live now (that's if it turns up, and most of the time it's at least 15 mins late) but I'm moving in a few weeks and it is the only bus that passes through Ely, every other bus starts at the market in town. I will be living with my mum as my parents are divorcing and there isnt anything in the area of the bus which she can afford which is also suitable for my mobility needs (there is one 70's house but it's badly laid out and I bumped into walls twice whilst we were looking round it)

My elbows are pretty weak so it's unlikely I'll be able to self propel, I went to America last year and there was a brand new natural sciences place which a quality wheelchair and good flooring, I managed to self propel around there with little problem but then we went to Disney and if they hadn't have had a scooter we would have wasted the whole day as I gave up self propelling after a few minutes and my mum simply didn't have the strength to push me (we've since found out she's probably got arthritis in her knee) Luckily I coaxed my dad in to coming to Universal with us as they didn't have a scooter option so he pushed me all day.

I don't want someone to go round with me, to me that's not independence, I might as well just wait until my mum gets home and go round with her. I want to be able to go to my local corner shop to pick up some bread or milk or just for something to do, go to the rental shop and get a movie if there's nothing on, spend an afternoon down by the river with the dog... All those sorts of things would be possible with a mobility scooter.

I will talk to the CAB about it all tomorrow, see what my options are. I have some savings but they're very precious so I need to work out what is the best thing for me before I use every last penny I have to get a scooter. A second hand scooter would be good but I weigh a considerable amount and the paths round here are very uneven and quite narrow so I need something quite robust and I think it's unlikely that one suitable for me would be available. I have been spending some time looking at different models and prices recently, to get an idea, but the area is vast. Also, I don't know the running costs of a scooter, but hopefully I'll be awarded DLA and that will pay for it.

well i hope you dla does go though sooner the better there is scooter scheme on moblity i have had a look as a few of them for myslef just so i can go out with my dog not sure if you have to be on hrm for that or not

iam lucky with the buses here only a few doors down bus stop , shame its not as good down your way there is the disablity grant you can get to make a bought property more useable and easyer to get in and out of

i no what you mean you just want the simple things in life back to how they were or as close as possible

formaldehyde_perfume

Hey, I just thought I'd let you know that I went to the CAB on monday and it was pretty useless, however I did get an appointment for 2pm for tuesday 17th with the person who actually deals with the filling in of the benefit forms. I also asked at the Job Centre for an appointment with the disability adviser and was told to come back on my sign-in day and they'd make an appointment then God I hate that place. However, at least I can tick these things off my list and I feel better that I've actually done something about it.

alfchild

cateblanchett wrote: »

First time poster - so hope I'm doing this right. I have something called Ehlers-Danlos Syndrome (hypermobility type) - this causes joint pain and hyperextension, muscle pain and ridiculously easily injured (eg by turning door handle the other day - made my thumb click out!), i have had repeated surgeries, including for prolapsed internal organs which took 18 months to recover from, am currently having intensive physio and waiting for place on pain management course. once that's done, hope to retrain and get off these benefits so I can stop being treated as a liar all the time. Had a particularly bad fall in Nov 2009 and now waiting for further surgery. I have been on long term IB since Feb 2008 when I finally gave in and applied for it. My marriage has now broken up and I am really struggling with doing stuff for myself without my husband's help. I should have applied for DLA years ago (at same timeas IB) but didn't want to be labelled disabled - but applied recently because I really need teh money from it to pay for people to help me with the stuff I can't do myself (ie what you're supposed to use it for!). I filled in the form entirely honestly (despite other EDS sufferers telling me to do it based on my 'worst day' because 'eveyone does that'), I didn't want to tell even the smallest lie, so told the complete truth and gave lots of explanation. the condition does fluctuate, that's what it's like, but on my best day I am still a substantially disabled 37 year old and can never do things like cook a main meal. on the fomr, where it lists the tasks associated with cooking, I explained i couldn't do any of them due to severe pain and that if i tried I risked injury, and cited cases where i had tried and had ended up with things like my wrist clicking out, scalded myself etc. i also explained that i had frequent falls and dizzy spells due to EDS and supplied reports from both my rheumatologist and physio confirming lots of detail, including about falls and being unable to performt he cooking task.

I have had a letter this morning refusing me any DLA at all! I can live with not getting any mobility, since on a good day i can walk up to 400m (although when I have flare up or after a fall, i can be confined to the house for weeks at a time). I can just about accept not getting higher rate care because my needs fluctuate - i can be bedridden one week, and reasonably independent the next. but I fall or almost fall on a daily basis, and i haven't been able to cook a meal for almost two years - i live on cereal bars and milk. i only get proper food if my mum cooks it for me.

the letter states that 'you don't need help to use kitchen tools, carry and lift safely, plan a meal or motivate yourself. Although you have difficulty with standing, you can sit from time to time when preparing a cooked main meal for one person. You don't need help to prepare a cooked main meal for one person.' It also states that I am 'not at risk of falling, not as risk from dizzy spells or blackouts. You can take reasonable precautions to prevent any dangers.' my condition gives me palpitations and low blood pressure (and therefore dizziness) every time I stand up. my weak joints give me very poor balance. in the last few weeks I've fallen getting out of teh bath, going down the stairs, and after standing up from the sofa when I landed on the coffee table and injured myself so badly i've been stuck inside ever since. the only precaution i can take to not fall is to never stand up!!!!

please advise - is this normal behaviour for ATOS when they assess DLA? also, my IB reveiw has come up and i've sent the form back and heard nothing - are they going to turn that down because they've turned down my DLA? Since the letter from ATOS directly contradicts what I've written on the DLA form, I am concerned that they have refused it because they think I'm lying - but i've just waded through it again, plus all the evidence i've sent and it's all true! but if they think i'm a liar, presumably that means they'll refuse my IB??? I have asked for the decision to be reviewed and they said to write and explain why I think it's unfair, but I can only reiterate what i put on the form but just put more detail - so i can't see why they will say yes this time...

sorry - really panicking now - any advice would be gratefully received.

APPEAL
I first applied in 2007 after a stroke was 32 years. Got turned down mainly due to consultant saying that he had no worries - this was apparently taken thewrong way. Got told last year that i should reaply as it was rediculous, long story short, had another stroke last year after applying. Had 2 dr reports, a medical in which the dr then said he thought it was wrong I was turned down after the stroke never mind other conditions thiscaused. So fight.

hrafndot

"please advise - is this normal behaviour for ATOS when they assess DLA? also, my IB reveiw has come up and i've sent the form back "

Sorry to go off topic, but I didn't realised that ATOS were involved in assessing DLA, if this is the case, this must have been a recent development. Please can someone clarify as I am up to my neck in ATOS caused problems.

alfchild

Tell me about it, I had the medical by them sept last year, I had another 2 by them for my ESA (different drs) which felt completely different. They ask for a medical when they are inclusive what rate to do - this is what I was told. The dr who came for this medical was appald at what had happened and shouldve been straight forward, mind you the esa drs were like blumming hitlers and I felt as if I was doing something wrong really wanted somewhere to complain about this but no joy.

hrafndot

So it IS ATOS who are conducting DLA medicals. God help us!!!