To think that getting help in the community for a disability shouldn't be dependant on being a successful claimant of PIP (or DLA)

[BeyondTheLimitsOfAcceptability]

I have psoriatic arthritis, which has gotten gradually worse over the last year and is currently at its worst. I have delayed thinking of myself as "disabled" for as long as possible, but I am struggling, my DH is struggling looking after me and the DCs, and I have to do something.

So I've contacted my local council, explained that I have a long term health problem that affects my life significantly, and they have told me that without me qualifying for DLA (not that I can apply for that now anyway, so I assume they mean PIP too ) they cannot help me, so contact them again when I have had a successful claim. I cant find any relevant charities that operate in my area either btw.

Surely this isn't right? Please someone tell me I've been misinformed? I have now applied for PIP, but I've heard nothing but horror stories about it and its really worrying me.

I have to have some help from somewhere :(

Any other suggestions or advice would be hugely appreciated too

What sort of support are you after? Was it social services you contacted?

Well, thats the other problem I have, it seems to be nigh on impossible to find out what help is available. In an ideal world, I'd have a personal servant but I don't really know what help is available to me.

If I did qualify for any monetary assistance, it would be spent on getting someone in to help with the house and the kids, so anything like that would be perfect.

There was one "contact us" email (I don't do well on the phone anymore - anxiety) which is who I contacted, plus I found a separate one to ask about gym membership as I was advised to swim to help my joints, but both told me all assistance is DLA dependant.

Am I able to speak to ss direct then?

Sorry, I have no idea at all about this, didnt realise the info would be so hard to find either.

And I must sound like a right idiot to you, I dont know what it is I need. Just feel so overwhelmed with it all :(

"Monetary assistance" - god, am typing like a knob!

Talking about it gets me all flustered, sorry for how hard that is to read :(

What help is that you need or want?

DLA (PIP) - just about everything hinges around getting this. It is not 'just' a monetary payment but the gateway to almost all other help.

Do not think of it as 'monetary assistance' - think of it as opening doors!

Your consultant or gp should be able to refer you to adult social services, who ime are generally lovely and will try and help.

Would Homestart be able to help? You can self refer to that or your hv can do it.

DanceParty, thats the thing thats bothering me, not just in my case but in general. I've been ill for over a year and could have applied for DLA before it changed, but now the criteria for the PIP is harder and people, not just me, are more likely to be turned down. So then any help they get on a local level, they may no longer have access to?

Rue, I will look at homestart, thanks :) this is the sort of thing I mean though, I have no idea what to look for. Lucky I have MN!!

I have psoriatic arthritis too, it's been getting worse. I had my blue badge taken away from me earlier this year as I am no longer disabled enough. Apparently. Even though I am worse now than I was when I was first issued it.

I wish you so much luck in finding the help that you need, unfortunately arthritic conditions are not being treated very well by this government.

The DLA is a huge gateway, but it can be fraught and emotional. Get help filling in the forms from people that complete them professionally.

There appears to be a homestart in my county, but not in my city, so will email them and see if they cover me. :)

Sorry that you are struggling too MrGere

It's absolutely not true that you need dla/ pip to access ss care.

Ss will do anything to wriggle out of taking on more people they might have to help though, and you'll need to find out exactly what the rules, thresholds and their legal responsibilities are, as you'll need to insist on them following due procedure and it's more than likely they will have any number of strategies to avoid helping.

This is because even though councils are subject to deep budget cuts, they have a legal obligation to give care to disabled people that meet the (high) thresholds. They cannot refuse care on the grounds of budgets or money. Therefore councils are not exactly wanting to take on anyone, even if they have to.

They can however raise thresholds so they are incredibly high, and lower standards of care by employing worse and worse people for less and less money. They will probably ignore the law, deny responsibility and make up random rules they cannot enforce / are directly in opposition to their statutory requirements.

Before anyone comes on saying how mean and cynical I am, through personal experience and alot of accumulated knowledge talking to tribunal judges and disability lawyers, this is the reality of the situation. I am much better off than others I know, but it's hard won.

However as a person in need, it's not your job to worry about their budgets, and it is in your interests to sit down and learn about the system, work out where you fit in terms of thresholds and criteria, and then set out to get the care you need.

Sooo,

1. Every person is entitled to an assessment of their care needs. You can self refer but will be quicker through your gp

1. Prepare for your assessment to avoid them using all sorts of rubbish to avoid accurately assessing you.

I'll write some more on how to prepare both in terms of understanding their criteria and responsibilities, and also the system in general.

It's not fair and it shouldn't be that a person who is already struggling has to learn how to navigate a system set up to screen people out, but it's better to work with that knowledge than hope and be left in need.

Look at the Personal Independence Payment Decision Makers' Guide - at the end is a list of descriptors, indicating the points allocations. You can see if you think you might qualify.

Does your local hospital have community occupational therapists? If they do you can ring them and self refer or go through your gp who should refer you. The OTs can assess you and your home for equipment or give advice on items that will help your condition.

How to prepare for an initial care assessment:

On your council website look up disability care criteria which is used in your initial assessment. There is a government standard but each council can create their own interpretation of it. It's a list of needs, with a definition for each level of need rated from low to critical.

It goes low, moderate, greater moderate, substantial, and critical/ life threatening. Types of needs are things like personal care, safety, household, access to healthcare etc.

Then you need to find out what the thresholds are in your area... Each council sets their own threshold. It will be most likely substantial needs upwards, though a few still act for greater moderate needs.

Go through and be honest in terms of where you sit on the scale of needs. Try and think of examples to give at the assessment. And be aware that although they are not allowed to, but they will 'weight' certain needs as higher priority than others, so for instance if your household needs are critical, they may still refuse you help as your personal needs are low.

Hope any of that made sense!

I'm afraid LAs are so overwhelmed by the number of people needing their help vs the funds available that they're probably using PIP eligibility as their "getting through the front door" criteria before they'll even begin to assess your needs. They get the PIP system to weed out lower need levels as their threshold for accessing their services has had to be raised because of the cuts. That is in no way suggesting you don't need or that you wouldn't benefit from help but the cost of adult social care in the UK is enormous and rising as people live longer but with accompanying medical conditions. I'm afraid they may find you aren't suffering 'enough' which is unfair but is a necessary evil to leave funds available for those with very high care needs. Worth asking but probably best not to get your hopes up. Hope you find someone who will help.

I think different LAs have different ways of doing things, but it sounds to me like you need an assessment from an occupational therapist. Your GP should be able to refer you.

You need 8 points to qualify for standard PIP or 12 points to qualify for Enhanced PIP.

The scores are totalled for each of the elements separately, so you can't say 'I get 4 points for daily living and 4 points for mobility, so I get 8 points.' You have to look first at daily living and see if you would get either 8 or 12 points; then look at mobility and see if you would get 8 or 12 points.

Finally have a look on the Internet for info on 'Putting People First' which is about eligibility for social care and the process set out by the government.

Thanks Lougle, I've looked at the points breakdown and questions, and yes I think I should get it, just worried that everything depends on the one interview!

I've seen my GP so much recently, is she going to think I'm a pain if I make an appointment just to sort out possible OT and SS referrals? Or is it very common?

It sounds like a stupid little thing, but one thing I do want is the "registration" card, which would cost the council practically nothing. It's taken me a long time to get used to the idea myself, and there are people around me who don't take it seriously and think I'm just whinging for nothing, and I'd just like some proof that I deserve to sit down in disabled seats or whatever. Yswim?

Ps, thanks for all the other help too, too many posts to thank individually

Unless the law has changed (doubtful), they may well be using Pip as an entry criteria... But they are not allowed to, so you need to challenge it. As I said up thread, what ss do compared to what they have a statutory requirement to do may differ widely.

I get all the 'oh dear services under pressure' stuff but what tends to happen is that the loudest and most able to fight get resources, not those who need it most.

The first interactions I had with ss, they ignored what I said and my urgent plight, and refused to help. Two years fight and trauma later I have round the clock care. But as I was vulnerable and deeply in need I couldn't fight for myself when I needed to most, and I very quickly realised unless you fight and be very on top of things, no one gives a flying f*ck how urgent or critical help is needed. I was lucky and an saint appeared from my past to do initial battles...

Can you imagine walking away from someone who couldn't move their legs or back, bedbound 25/7, couldnt use or get to a toiley, couldnt feed themselves, get water, had a stinking house with mice running over the bed and cot all day and night... someone who couldn't even get to a doctors or hospital, reach a phone. And just walk out and leave them? Because that's what happened, and that was before the current cuts...

Sorry op I hope I'm not terrifying you, but I cannot stress enough that if you genuinely are desperate for help, you can get it of you are fully informed. Btw I didn't know any of what I've written here when I applied, so you're already one step ahead.

lougle that was a helpful link for me too thanks.

I'm on lifetime award higher rate dla and care, so that means the sword falls on me in 2015... So it's good to see what I have to get through next. I rely on that money to pay for carers and getting to hospitals, so I'll be another one screwed...

I'd rate myself honestly (harshly?) as a 15 for care and a 12 for mobility, which is worrying as its a bit close to the line for the marking down. I think it all depends who you get doing the assessment, as a little knowledge plus atos system/ culture is a dangerous thing.

Why not put in a claim, if its turned down then it is but if you do it will make your life easier.

Oops! Forgot to return to this thread!

McNew I am waiting for my paperwork to come and am going to put one in. I just deal with my anxiety by overthinking possible scenarios before I need to

I'll be honest though, the predicted 20% that will lose their DLA when they change to PIP is really getting to me, because of this. I have emailed my council querying it...

Hi Beyond, I haven't read the whole thread but I would recommend a few things. I would get your husband to contact you local Carers centre as he is providing a lot of support for you. They will be able to suggest other pathways for funding eg a grant so you can go swimming and other specific charities that could be of help to you. There is also family fund which is open to anyone with children under 18, although it is means tested and this covers things like buying white goods if you need anything. When you are filling in your PIP form you need to fill it in like it is your worst day. There are websites that will have guidelines on filling in PIP which may be useful, have a google! Your GP should refer you to other services such as physio or hydro therapy although the waiting lists may be long... good luck. Ps don't be intimidated by PIP. This is what the government want, to make people feel guilty that they are not ill enough to apply. It is vile

Intimidated and feeling guilty, damn right. Am at myself now, playing into their hands. Its just so effing hard though :(

Council got back to me btw, didnt answer the question funnily enough, told me to speak to CAB.