[Sofie]

Currently receive DLA for being partially sighted. Despite this fact, they said that I don't have communication issues. (can someone please explain that?)

When I reapplied in September / October, my GP wrote something about how I had too much fluid on my brain. I wrote on my form that I have memory problems.

Despite me writing a load of stuff which you may expect to see with people who have my conditions, they decided this isn't the case and I was awarded low care and mobility again. It seems as though they just see (excuse the pun) Nystagmus as visual impairment - yet, it affects everything.

I am undergoing a load of tests at the moment and my neurologist is trying to diagnose me with something. (no idea what this something is - but, he thinks I have problems with my walking unrelated to Nystagmus. My walking is not severe enough to get HRM; but means I walk into everything, fall over a lot and need supervision to prevent this)

Because I have variable disabilities, it's impossible to know how long they will last for. I have some days where my vision may just go for a few minutes and then goes back to normal. (normal for me)

My needs have changed; but I have no idea how long they will last for.

Because it was assumed that my balance / walking problems are related to Nystagmus, I always wrote that on my form and supplied evidence. Despite supplying the evidence, I was told that I have no such issue.

According to my tribunal in September, I don't quite meet the criteria for mid rate care. Yet, unlike the low rate care and both mobility components, there doesn't seem to be clear cut qualifying criteria - it just says "you must need help for most of the day or night" - what does that mean? They've agreed that I need help making a meal and a few other things.

Do I wait until I get my other diagnoses? I would hope that would make them realise that I have many more care needs than they say I do. Yet, I have no idea how long this is going to take - it could take months or even years.

[Monic1511]

Hi Sofie
as for reapplications I've been told thatif you reapply or ask for a suspersession within 6 months then the DBC will use the old medical evidence rather than pay for new up todate information.

What you would need to do is phone Blackpool 6 - 9 months after the tribunal and ask for a supersession as your condition has deterioated substantially

Monic

[KizzyKazaer]

According to my tribunal in September, I don't quite meet the criteria for mid rate care. Yet, unlike the low rate care and both mobility components, there doesn't seem to be clear cut qualifying criteria - it just says "you must need help for most of the day or night" - what does that mean?

Sofie - I'm aware from your previous posts over a while now that you are quite knowledgeable about benefits, so forgive me in advance if any part of this post is 'telling granny to suck eggs' 

There are four ways to qualify for middle rate care:

During the day

- Needing frequent attention throughout the day in connection with your bodily functions, or
- Requiring continual supervision throughout the day in order to avoid substantial danger to yourself or others.

During the night

- Needing prolonged or repeated attention in connection with your bodily functions,  or
- In order to avoid substantial danger to yourself or others you require another person to be awake for a prolonged period 
  at frequent intervals for the purpose of watching over you

Breaking down some definitions further, 'frequent' means more than once or twice for the day conditions.

For the night conditions, 'prolonged' means 20 minutes or more, and 'repeated' means at least twice.  One or the other will qualify. 

Now for the important part, should you go ahead with requesting a supersession as Monic describes:

You'll be needing to supply some new examples (due to deterioration in condition) as to what happens/could happen when you're 'going it alone' and follow that with a description of how some help/supervision could improve the situation (especially when it comes to matters of your personal safety and general well-being).   This is really important as even though you don't have to be actually receiving this help/supervision, you do need to demonstrate that you 'reasonably require' it.    (If having assistance wouldn't make any difference for you at all while carrying out the given activities, then you may not be entitled to DLA. )  Sorry, I don't know enough about your impairments - I seem to remember you have other issues as well as VI? - to give any personalised examples at this stage!

(some information sourced from: Benefits and Work  http://www.benefitsandwork.co.uk/)
 

[Sofie]

Thanks Kizzy. I am aware that diagnosis is irrelevant; but from previous experience, they don't seem to understand that my disabilities cause me to have a lot of care needs. It seems that unless I can get a diagnosis, I won't be taken seriously.

That's interesting Monic. And is that even if the tribunal was 9 months (ish) after being turned down for DLA?

[Monic1511]

Hi Sophie

I know a lot of folk who lose their tribunal come in the next month looking for an appointment to reapply and the WRO's explain that the panel last month didn't think they met whatever criteria and unless they have (and can show) significant detioration since the medical and sometimes the tribunal the WRO will advise waiting at least 3 months.  Some tribunals will say to claimaints to wait a couple of months and reapply.
Im not sure that there is justification under law for the attitude but thats what we seem to be fighting against.

I know that your aware of this but this is what the disability rights handbook says
To qualify for DLA care component your care needs must ultimately stem from disability; both physical and mental disability may help you qualify.  You must be so severely disabled physically or mentally that you require
During the day.
No 1. “Frequent attention throughout the day in connection with your bodily functions” or
No 2. “Continual supervision throughout the day in order to avoid substantial danger to yourself or others”.

At Night
No 3. “prolonged or repeated attention in connection with your bodily functions” or
No 4. “in order to avoid substantial danger to yourself or others you require another person to be awake for a prolonged period or at frequent intervals for the purpose of watching over you “ or

Part-time day care
No 5 “you require in connection with your bodily functions attention from another person for a significant portion of the day (whether during a single period or a number of periods)” or

Cooking test
No 6”you cannot prepare a cooked main meal for yourself if you have the ingredients”.

To get High rate care you need to satisfy
Either No 1 or No 2 daytime tests and
Either No 3 or No 4 night time tests

To get Middle rate care
Either No 1 or No 2 daytime tests or
Either No 3 or No 4 night time tests

To get Low rate care
Either No 5 or No 6 part time day care


When doing the forms I just stress I need supervision while doing this in order to keep me safe as I fall frequently - it feels as if you go over the top but better too much than too little imo
Good luck & I hope thats not as confused as I feel right now 
Monic

[Sofie]

Thanks Monic. How often exactly is "frequent attention throughout the day"? I'm sure RNIB said something about how the help much be spread out throughout the day - so, just needing help in the morning wouldn't qualify for MRC.

[Sunshine Meadows]

Sofie,

Monic and Kizzy know more about this than I do but i think it worth mentioning my experience.

Once I was no longer working and Mr Sunshine had to commute to work which meant he was gone for an extra 2 hours a day I realised just how much I needed his help during the day. For example, I could not manage to make myself a drink and something to eat so ended up with bottled water and a cereal bar. Struggling in the day put me more at risk of falls and also meant I needed more care in the night eg help to get out of bed to go for a pee. What I ended up doing was sending in a 'new' claim because a change in home circumstances had brought to light the help I needed throughout the day and night.

If you think about how you live day to day and how life would be if you did not get the help you do from family and friends, could you function at a ordinary level eg get washed, dressed, eat, move around the house etc?

Monic and Kizzy,

As I was writing the above a thought occurred to me when people are assessed for the DLA care component do you think much account of needing help out doors is taken? It does seem to me that things like shopping, socialising and leisure pursuits are covered by the mobility component and that the care component is more about basic functions and car.

[Sofie]

Sunshine, first of all, thank you for your reply. Secondly:

As I was writing the above a thought occurred to me when people are assessed for the DLA care component do you think much account of needing help out doors is taken? It does seem to me that things like shopping, socialising and leisure pursuits are covered by the mobility component and that the care component is more about basic functions and car.

I seem to remember it asks about interests and socialising when out. For example, I write on the care bit that I need help with shopping (they don't count food shopping) because I need to ensure amongst other things, that I have the correct money. Some coins are far too similar to tell the difference.

I have given them diaries a few times, which detail the help I need and why. (reinforcing what's written on the form, basically) Despite pretty much saying that I need help throughout the day, this is largely ignored.

[Monic1511]

Hi Sofie

sorry for the delay in responding - I don't have the book with me tonight (left it in the office) but I think fequent is several times a day & substantial is for more than 20 minutes.  Don't panic though think about it this way - you need help to get up out of bed,
help to the toilet
help to get washed & dressed - once thats done you have a rest & then try to get breakfast, can you make it & carry it to a table where you can eat or do you have to wait till either you have recovered enough energy or someone can carry the cuppa to you 

Do you have a mid morning cuppa & need help with that - Oh and did you take any moring meds?
its now lunch time - hopw do you cope with that?  toilet breaks - do you need help (ok you might not get it but how awkward is it getting to the toilet & redressing etc)
So if thats the morning & the afternoon is similar then you can show that you need assistance several times a day.
How much of a performance is it to get out the door to get to the shops? you know extra time to get ready to leave the house, getting there, stopping for a rest, trying to remember what you need & the after effects - I know if my mum goes out then the next day is spent in bed 

I hope thats useful & not a rambling mess 
take care
Monic

[Sofie]

Thanks Monic At my tribunal last year they said I was borderline for mid care.

I need a lot of the help you mentioned - they claim I don't. They told me to do things that would mean I could do those things myself - they completely missed the point.

[Monic1511]

Hi Sofie
When they say in the refusal letters "although you fall you do not hurt yourself" or "you are able to make a meal slowly & with suitable aids"  my appeal letters address each point & I tend to go to town.
You said I don't hurt myself when I fall yet I have several bruises and as a result am unable to walk for the next 3 days without severe pain & excruitiating discomfort!!  As It takes me 60+ minutes to prepare a meal I often don't bother and will exist on cereal for the majority of the week.

Only thing I tell clients is that they must tell their GP that they have problems with these things - GP don't use common sense when responding to the DWP's letters.   My dad's GP said he had no communication problems - he has 2 burst eardrums and lipreads so you can imagine the conversation in a public area     I watched him talk to another person about football when they were speaking about the weather    I did try not to  but if thats not communication problems then what is!

Common sense seems very rare
take care
Monic

[hossylass]

Sofie, you do have to remember that the people who get medium rate care really have very substantial needs throughout the day. If you think about it this way, its as disabled as you can get. HRC only kicks in if you have the same amount of help required through the night.

Thats quite stiff criteria, so I can see how you are borderline.
You described in the past how you have fallen and grazed your knees and hands whilst out running - now that really doesn't count towards hurting yourself when falling.
Neither does falling over the dogs or the furniture - they simply wont count these things.
You have to have the potential to really hurt yourself falling because of an age related thing or a bone disorder meaning a break is likely and they would want to see evidence that you have broken something in the past because of falling because of your disability, or similar.

The point is that you can state that you satisfy the criteria, but you dont satisfy them enough, if that makes sense.
Or rather disabled in the right way but not disabled enough.

You could get lucky and get MRC, but to be honest I think that would leave you wide open to criticism or worse.

[Sofie]

Hi Sofie
When they say in the refusal letters "although you fall you do not hurt yourself"

They do say this. I'm more likely to fall over due to what looks like a mild form of spina bifida. I don't have a bone disease; so falling doesn't hurt me more than the average person; but I am very prone to falling - normally over thin air. Unfortunately, I don't think I have photos from last year where I managed to fall over something and bruised both knees - knees were so sore I couldn't walk upstairs properly for a few days. I do however, still have the scars on my knees from previous falls.

I know that my GP wrote some stuff about my head (I have part of my brain missing / something that shouldn't be there) and in my case, this does cause communication issues. Despite this and being sight impaired, I apparently don't have communication issues. Looking through previous award stuff, they did agree that I have communication needs; now they don't. This confuses me - I still struggle to read and always have done. In fact, my reading difficulties are much worse now than they were when I was awarded DLA in 2008.

If I did get MRC, I could get the equipment and help I need - meaning I may not need MRC in the future...

[hossylass]

I know what you mean about that

Its a horrible thing to go through, and people  do bang on about "Not needing a diagnosis" but that is not true. You do need at least aknowledgment that there is some basis for your disability, otherwise without proof you could be just making it up.

And the really grim news is that until you get lots of medical evidence that supports your claim then the DWP have every right to be sceptical.

But you are young yet, it takes a lot of people many years to get enough medical evidence to support their claims - I think one Oucher had had the condition for over 11 years, and made 11 attempts at getting DLA befoe it was awarded.
It is much simpler if you have diagnosis and the condition fits the standard expectations of impairment, but not many of us are in that situation.

[Sofie]

I know what you mean about that

Its a horrible thing to go through, and people  do bang on about "Not needing a diagnosis" but that is not true. You do need at least aknowledgment that there is some basis for your disability, otherwise without proof you could be just making it up.

This is the impression I get. There's a lot of documented proof that I have a neck injury, don't walk properly (I can walk; just walk into anything and everything) and have really bad co-ordination. Yet, somehow, "medical services" decided that I don't have balance problems - they've never met me. It's a recognised side effect of Nystagmus. Although, in my case, it may well be something else.

Given the way everything is, I know it's going to take years to get a diagnosis of anything. In fact, I might be lucky if I do get a diagnosis, ever. I'm also waiting to find out whether I still have epilepsy too. (I had it as a child and it went undiagnosed)