UK Keratoconus Self-Help and Support Association

Any members currently claiming DLA (Disability Living Allowance) will probably know that it is being replaced with a new system from April next year. The worry is that this will make it much harder for people to qualify and RNIB has launched a campaign which some of you might want to get involved in. You'll find details on the RNIB website
www.rnib.org.uk/getinvolved/campaign/yo ... P_act.aspx
Anne

Hi everyone...

This document is very daunting to a lay person - in fact, its daunting to ANYONE. You might even think it doesn't apply to you. You can see OK with lenses, yes? So what is the problem?

You may be perfectly fine one day. The next day, you may require help getting around, travelling to work, actually SEEING to work - just because you lost a lens and it is going to take a few weeks to get an new one. Then, because you have been out of a lens for a few weeks, the replacement does not work quite the same way. Before you know it, you are struggling at work and then DLA suddenly becomes very relevant.

This issue affects you all. To help, the group and other people working to aid keratoconics, need your input. I have served on many committees trying to improve the lot of people with keratoconus and the struggle has always been that Govnt bodies do not recognise the particular problems of people with KC.

You may all be complacent thinking that the Govnt understand your issues, so why should you fight for your rights? But, actually, no... they do not. All they understand are people who have permanent issues. You can either see or not. You need support or you you do not. They really cannot get their head round a situation where you can see in the morning and not in the evening. You can see to work but not to drive. You can see by day but not by night. I understand this. You understand this. But Govnt does NOT understand this.

Please take the time to look at the link and also comment here. This may be your only chance to challenge these changes.

Lynn

Yes, definitely "seconded" from me on both Anne and Lynn's comments.

For those who might be unaware, the DLA application process (i.e. the current benefit) is incredibly tortuous. I'm used to procedures, processes and forms but the DLA one takes the biscuit. While I've no proof, I've a hunch that the complexity is a feature, not a bug. The more people who get deterred along the way, the lower the bill for the government. Now I'm all for only giving benefits to those who deserve them but there's a fine line between getting enough information from claimants to make an evidence-based decision and putting hurdles in people's ways. What Lynn said about our condition being variable and that nuanced variability falling through the broad-brush generalisations in the assessment criteria is spot-on. As is the stance that unless we do our upmost to influence this, we'll get what we're given (which I'd summarise, in a cleaned-up polite version as): "not much". And I'm really starting to take note -- and dislike -- the "benefits recipients are all a load of scroungers and anyone claiming disability benefits is on the fiddle" rhetoric which our culture today in this country seems to casually tolerate. Better visibility is the only solution to this problem -- the more people who know someone who gets a disability benefit (when warranted) the harder it is for the wider community to pigeon-hole people in that way.

When it comes to influencing policy on the DLA replacement, PIP, I've another hunch that it's a weighting machine. The more responses they have, the greater the degree of caution that will be applied to getting the new system right. I've followed the link in Anne's original post, you get a range of options from emailing your MP expressing concern to asking for a meeting. Being the "make the most nuisance of myself" type, I opted for "meet your MP to discuss". Immediately my email was bounced back from my MP's office (a Conservative in my case) with a pre-prepared response. So the Conservatives are seemingly picking out these requests and logging them while fobbing off the sender's request to actually meet the MP. Which is fine, at least I've made my point. Would be interested to hear what other people's MPs responses are. Don't want to be political on this, I don't think any one party is "better" or "worse" than any other in this regard.

Finally, one key point. DLA (and PIP) are "gateway" benefits, so-called because they provide the successful claimant with access to other entitlements. For example, once I got DLA with a mobility component, I could then apply for a Disabled Persons Railcard. This saves a third on all rail travel. Since I'm unable to drive at the moment -- and the train is considerably more expensive at full-fare rate than driving, even taking all other costs into account e.g. servicing and depreciation etc. -- that mostly puts me back on a level-playingfield compared to when I could use the car. Without the DLA, there'd be no Railcard. Without the Railcard, my costs would be higher and I'd call that direct discrimination.

So, please do consider getting involved in the campaign.

Kind regards

Chris

Well said Chris

Looking again at the new regs, there is a clause for what they call "fluctuating conditions". Here is the relevant part and please read section (d) which relates directly to you.

Descriptors mentioned below mean day to day activities which are assigned a number of points, such as washing/bathing or engaging socially or travelling.

Q6 – What are your views on how we are dealing with fluctuating conditions?

Regulation 4(4)(c) of the draft regulations and paragraphs 7.13 to 7.15 of the explanatory note set our how we are proposing to assign descriptors to people who have fluctuating conditions. These are that:
- Scoring descriptors will apply to individuals where their impairment(s) affects their ability to complete an activity on more than 50 per cent of days in a 12 month period.
- If one descriptor in an activity applies on more than 50 per cent of the days in the period – i.e. the activity cannot be completed in the way described on more than 50 per cent of days – then that descriptor should be chosen.
- If more than one descriptor in an activity applies on more than 50 per cent of the days in the period, then the descriptor chosen should be the one which applies for the greatest proportion of the time.
- Where one single descriptor in an activity is not satisfied on more than 50 per cent of days, but a number of different descriptors in that activity together are satisfied on more than 50 per cent of days – for example, descriptor ‘B’ is satisfied on 40 per cent of days and
descriptor ‘C’ on 30 per cent of different days – the descriptor satisfied for the highest proportion of the time should be selected.
What are your views on this approach and how this is set out in the regulations?

(d) in assessing the claimant’s ability to carry out an activity, the claimant is to be assessed as if wearing or using any aid or appliance which –
(i) is normally worn or used; or
(ii) the claimant could reasonably be expected to wear or use.

Also I refer to section 7 on communicating

Needs to use an aid or appliance other than spectacles or contact lenses to access written information.

FIRST: The above statement assumes that if you can wear contact lenses you are fine.

If you are assessed fro DLA/PIP, this will be done wearing your CLs and if you say you can wear your lenses all day then this will be taken absolutely on face value. No-one is going to argue with you. I absolutely KNOW that many of you lie about lens wear for many reasons. often you worry you may be told to leave lenses out if you complain they are hurting. Maybe the last time you complained you were given a set of lenses that gave you worse vision. Many simply have lower expectations because you were told that lenses might be uncomfortable and think it is OK that you can only wear lenses 8 hours a day.

Whatever the reason, if you end up needing DLA/PIP, your eye care professional may be asked for a report and if you always say you have no issues with lens wear. then this is what will be taken into consideration. Therefore think VERY carefully when you are asked about this at your consultations.

SECOND: This whole section about assessing whether a particular problem applies for more than 50% of days is a nonsense when talking about fluctuating conditions. How on earth can anyone predict this about anything that fluctuates?

For instance, if you normally see OK with contact lenses but this depends on you alternating wear between eyes each day, then you are fine as far as DLA is concerned. However, if one eye then needed a graft, you might then be thrown completely into the situation of only being able to see for 50% of the time for a year while the graft settles.

Additionally, if you decide to go through with CXL, how does this affect benefits? Its an elective procedure not fully approved by NICE (as in you have to prove progression) so if you are one of those whose vision fluctuates a lot for 6 months post op, this might affect employment.

Even if you do not want to campaign, it would be very useful to those of us who do if we had some feedback on these issues here. Please be aware, it is hard enough raising Govnt awareness of issues before legislation is passed. It is next to impossible afterwards, as the answer always is: you had plenty of opportunity to comment beforehand.

I suggest that anyone considering responding to the consultation or talking to their MP concentrates on the contact lens aspect of the draft paper as it particularly mentions this and we know its an issue for KC. If we could even get a clause inserted that said something like:

"Needs to use an aid or appliance other than spectacles or contact lenses to access written information or where spectacles and contact lenses do not fully correct vision or cannot be worn at all times.

This consultation finishes at the end of April so there is little time left to make your views known.

Lynn