PIP CONSULTATION BY DWP - get active please!

Everyday living
1

The DWP has sneaked in a dangerous consultation, which if we don’t all challenge the thinking and publicise on social media, our MPs and wherever we can, could potentially rob us of the benefit on which so many rely. It’s been up since 10th Dec to 29th Jan).

Its on the everyday living component of PIP - AIDS and Appliances and gives a number of different scenarios for awarding; several of which would get rid of passporting and make claimants potentially subject to the benefit cap a further scenario is the option of vouchers ( look across to the USA which uses this system for ‘welfare’.

the link is: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/484217/pip-consultation-on-aids-and-appliances.pdf

Be aware that 'consultations ’ are often just means of ticking the box before they do what they want anyway.

I have only just been made aware of this cynical move to sneak it under the radar as people planned for Xmas abs the New Year.

I am bewildered that despite the MSS campaign on welfare, MS: Enough, it’s not been blazoned all over the site. Nothing the DWP does under a Tory government is finance neutral - after the failure of their attack on Tax Credits ( tho they are still going to be under Universal Credit) meant that disabled people were most likely to be the next casualty. Yet I’ve read nothing in the mainstream media, or from 38 degrees, or for goodness sake from the Labour Party.

So I am contacting my MP, Corbyns office, the All Party Parliamentary Group, MSS CEO, Michelle Mitchel OBE and the media - anyone who can make a stink about it (and it does stunk) but WE ALL need to fight back.

I also wonder why it’s not a forum topic? Has it come up in another thread and I’ve missed it?

Aids and Appliances are apparently what scores claimants points ( DWP view: they shouldn’t) - never mind that a real disability makes them necessary. I’m flaming mad that I have to use my limited energy and ability to take in and respond to options that are designed to obfuscate and confuse, especially when cognition is shaky taking in new info and options as it us for so many of us ( see MS Trust for an excellent resource on that).

BTW Happy New Year!!?

Susi

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Oh Susi…I have just read part of the link you gave us and I`m cabbaged…totally cabbaged.

I read it out to my hubby, who can take things in, rationalise and understand…but he too said it was gobble de gook!

I `m surprised your post has slipped to the 2nd page.

BUT

there have been discussions on the forum not so long ago. I did try to read it but it wasnt going in!

So, do I take it that needing aids and appliances means you get more or less points?

Is it possible to give me a yes or no answer, please?

Another thing that`s confusing me is this;

there are parts of the info which read this new ruling concerns people of working age.

Well, I am 63, receive the state pension, yet I did get a letter some time ago, telling me that I would be transferred at some point, from DLA to PIP.

Can you advise on this too, please?

Thankyou.

luv Pollx

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Poll

you will get less points not more. The thoughts are that some AIDS are cheap or provided by the council. I not sure what they make of expensive aids like wet rooms?

age wise, you had to be 65 before 8/4/2013 to stay on DLA

Sorry

Paul

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Me too - re it slipping down unnoticed and unresponded to bar you and Paul.

Im so fed up with the sloppy behaviour of the MSS in not making this a glaring red light on this site.

Paul has answered your questions correctly.

Poll, the consultation is pretty terrifying isn’t it? I think it’s presented as it is to put us off replying cos it will be onerous.

My MP Catherine West is good so it’s a priority for me to contact her and Corbyn’s diary secretary, who I also know to try push it up his agenda asap, as soon as he’s announced his sorely needed reshuffle. I just wish others would get active.

i also intend to respond as best I can to the DWP consultation.

but to be honest, I feel pretty overwhelmed and I’m livid at at the MSS. I’m quite severely affected now and it’s really up to them to be manning the barricades on our behalf.

Susi x

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Thanks Paul…even tho its not good news for me!

Yeh, we are in debt for the wet room and will be paying it off for another 5 yrs! Also I am paying £101 a month out of my DLA, for my wheelchair .

Pollx

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Hello again Poll

the mobility component is not up for ‘consultation’ so hopefully the wheelchair payment will be covered. If for daily living you need assistance then hopefully that component will be safe.

if you can’t bath / shower alone then you should be deemed to need assistance not an aid, as would preparing a meal, dressing/undressing. The trick would be to emphasise on help you need NOT what aid you would need.

paul

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I think what they are saying is, some people are getting PIP, because they have to use so many aids to get through their day. The idea is that you would have to purchase these (I think that is the rationale), but what they are saying on this possible review is that a lot of people are using simple aids to get them through the day, which are free on the NHS anyway. So they they dont need the extra money to purchase them, but at the moment all these aids are scoring them the points.

The aim of DLA in the beginning was to allow people of working age to get to work. i.e. Mobility allowance use of a car, or money to buy or pay for things to help them get to work.

The care part of it was to enable people of working age, to be able to work with care assistance, and appliances so i thought. The thing is if its just for working people, then I have never understood how people who are totally disabled cant get out of the house can go to work in the first place. Its all a bit weird to me.

This is only a consultation/review document, it could take a long time for it all to be finalised so I wouldnt worry too much.

I am due for review soon, and I am just not going to stress about it. I have already now whilst waiting bought all my aids to help me in the house. Just buying a new scooter and canopy, then I am sorted. I cant be doing with any more stress it makes MS so much worse, what will be will be. I know how my life is impacted, I dont need to sit in front of no doctor or nurse to remind me of that.

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8

Thanks Susi, for raising this issue

If you missed the MS Society news story - you can read it here: http://mssoc.uk/1QwYD8a

We are very concerned about these developments. Whatever the outcome of the consultation, changes will need to be approved by MPs in the House of Commons (HoC). When it gets to the HoC we’ll be doing everything we can to influence MPs.

We’ll be responding to the consultation, both as the MS Society and as part of the Disability Benefits Consortium, a group of charities that also campaign on disability issues.

To help strengthen our response, we’re looking to arrange some telephone interviews with people with MS to hear about the impact this will have, and how aids and appliances are used by people with MS. Having more detailed stories will help make our response stronger.

We’re looking to hear from people with MS who claim the Daily Living Component of PIP, and who regularly use Aids and Appliances.

If this applies to you, we’d really appreciate you help in shaping our campaign.

We can arrange a 30-45 minute phone conversation at a time that’s convenient for you.

You can email campaigns@mssociety.org.uk if you’re able to participate.

Please put ‘PIP Consultation’ in the subject title.

Best wishes

Emma (admin)

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I’ve been reading it this morning and there are a few things that have jumped out at me:

The DWP have said (within the consultation document) that some aids and appliances are often available from the NHS and social services. Thus they are already aware of the geographical disadvantages that some people live with. So in some areas, people rarely have to pay for aids and appliances, whilst in others very little is available to the needful.

Secondly, they are not differentiating between costly and inexpensive aids. So if person A needs a perching stool, shower chair, grab bars, walking frame, anti slip mats, special cutlery etc (some of which is possibly provided by social services) and person B needs all of the same equipment plus an electric bed and / or riser chair (maybe not provided by social services) and neither has personal care provided by another person, should they be treated the same? The consultation document does not make this clear. The problem is that once a decision is made, ultimately person A and B would be treated as the same.

The third problem I saw was that many people could have assistance from a carer but just about manage on their own, ie. they attempt to remain independent. If the DWP successfully bring in rules that ultimately mean that if a claimant manages with aids alone then they don’t qualify for PIP, then many people are going to make use of a carer simply so they qualify. This will have the outcome that they lose independence plus their physical condition will suffer as a result.

The 5 options are not truly 5 different options either. If one option is to say people who gain points solely from aids and appliances will not qualify, and another option says that people will only gain one point (rather than the current two points) for using aids and appliances, ie. they won’t qualify, then basically it’s the same option. They are trying to make it harder to comment on by over-complication.

I haven’t finished properly reading it and thinking about it yet. When I do, I’ll comment some more.

Sue

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Hi Emma

I have seen that on the site but I think it’s far too woolly and crucially it should be easily seen as soon as people look at the site - the more individuals who have the tools to understand how each option would affect them (and it will always be adversely) the more will engage with it. The DWP welcome the opportunity to say how few people engaged with the consultation so obviously, the changes aren’t controversial . The MSS should be leading from the front, not taking it’s time in coming up with a Society response which hasn’t helped it’s members understand how best to tackle their own. People with disabilities and illness are often ill equipped to spend their desperately needed energy doing this as individuals - they feel overwhelmed and disempowered and the MSS should be all about truly representing it’s membership and enabling them to fully understand the possible impact on them of each of the options and the final response, which is that just because the government has decided that belatedly they want more people to lose the benefit than the initial forcast of 20% when PIP was dreamed up as a way of saving money - now they want 35%!

The campaigns team are missing a trick here, they should also be talking to anyone who currently qualifies for the care component of DLA as most people with MS who do so, especially at the higher rate will use aids and appliances. And if you haven’t already been migrated you can bet you will be soon as things heat up.

It really isn’t good enough to say you will be in touch with MPs when it comes to the HoC - the MSS should be making waves now. Why hasn’t a press release gone out?

Remember tax credits was a climb down initiated by the clamour from 38%, the opposiition and others. It was far more likely to be affective than anything about disabled people already so low in public esteem that they have been demonised. I can’t tell you how many people who reel off the myth about how easy it is to get disability benefits - even my lovely Polish decorator told me that!

Charities should really be leading the charge on this. Really making our case about how what the government is now proposing in another attack on the most vulnerable.

As another person said, when applying the focus should be on the assistance needed rather than the aid which is just another extension of the task. The MSS publication about PIP is great - I fear it wont be long before you are re-writing it.

Susi

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Dear all,

I’ve been trying to write a response to the DWP consultation document. It’s very difficult because they are asking people and organisations to comment on the existing scheme plus 5 different options for change. None of these changes would be in any of the claimants’ interest. However, it’s very difficult to write a reasoned response because of the difficulty level. In my opinion, the DWP have deliberately made it extremely complex. I was trying to work through it today, ignoring anything and anyone else, then I realised that even within the first question they are asking, there is a problem, I would have to challenge almost everything they’ve said because they are basing their questions on very iffy suppositions. And I’m basically not capable of doing it any more. Just the amount of time I’ve already spent on it has utterly worn me out.

So, the upshot of this is that the MS society campaigns group need as much help as they can get. I’ve answered the email from Emma (admin) - see #8 of this thread, they’d like people who currently use aids and appliances to give them some time on the phone to discuss their own use of said aids.

Anybody who is less challenged of brain than I, could of course, read the consultation document and make their own response to it.

I think it’s vital that those of us who claim DLA/PIP, regardless of whether they qualify for the care component solely on the grounds of their use of aids and appliances, or not, should do whatever we can to make our voices known and try to keep the existing system (such as it is!).

Sue

12

Morning

Could someone explain in simple words what this post is about because I am thick and if it’s a important change that effects PIP I need to know.

I presantly receive DLA

Regards

Ronin.

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Hi Ronin

The DWP have released a consultation document regarding their potential options to change PIP. They are concerned that many people seem to be qualifying for PIP (care component) based solely on their use of aids and appliances, ie. that they do not have the need of personal care. Their attitude is that many aids and appliances are a) low cost, b) low maintenance and / or c) could be provided to claimants without cost (could come from the NHS or social services). They have other concerns, but these are some of the main ones.

They are suggesting 5 different options to change the system, ranging from making it impossible to qualify for PIP (care) if you use aids and appliances but have no personal care needs, making a one off payment, setting a lower rate of PIP and cutting the points scored for the descriptors where a person uses an aid but does not need personal care. Basically, they are trying to make it harder for people to qualify. I find it quite reprehensible of the DWP. Those people who struggle the most to remain as independent as possible (so use often quite expensive aids, including some quite everyday items that are not designed as ‘disability’ aids) would have to either start to get some personal care (so their entitlement remains) or they will lose money. Also part of the options is removal of automatic premia to other benefits (for eg. when a person claims another, means tested benefit like housing benefit, they qualify for a higher premium when they get PIP for care. This means their entitlement to the means tested benefit could be higher). They are also suggesting a voucher scheme - to ensure that the money is spent on aids and appliances.

They are asking for organisations (such as the MS Society) and individuals to respond to their consultation document by the 29th January. The problem for individuals is that the document is complex and worded in such a way that when you start to answer the questions posed by the DWP, there are certain suppositions that they’ve made that (in my opinion) are incorrect. Therefore, before answering the questions, I think the whole document needs taking apart to examine the way they have defined ‘aids and appliances’ as well as their assumptions such as that vouchers would lead to ‘greater purchasing power’.

The MS Society campaigns group are responding to the document but need real people’s experience to help them. For this reason, they have asked for us as individuals to contact them to arrange phone conversations. See the post from Emma (admin) above for how to help.

The deadline for responses is now very short - it always was - the cynical part of me says this is to give groups and individuals as little time as possible to respond, meaning the DWP can make changes that will affect everyone who claims PIP for care, in particular those who qualify because they need to use aids to help them around the house but do not at present have help with care from another person. The changes could also potentially affect those people who claim because they get personal care as well; if the DWP manage to get some kind of voucher system going, it’s a very bad precedent.

I hope this makes things a little clearer.

Sue

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Consultation ticks the box - they will implement one of them and unless there’s a major campaign, probably the most pernicious. Notice they’ve packed the HoL to stop them rejecting bills such as this.

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If you’ve not already got a care plan from social services I would urge you all to get one. Even if you don’t qualify for financial help for a carer from the council, it would outline the help you NEED even if you don’t get it. The DWP position was always the latter - after all someone may live alone and be quite isolated so even though their needs are severe, they struggle to cope on their own. A care plan can be included with all your medical evidence when you are up for migration or review.

Susi

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That’s an excellent point Susi. I’m going to put that on my reminder list to do.

One of my thoughts about this consultation had been that the DLA criteria was always about need rather than use and that seems to be one of the problems with this change.

Thank you for highlighting this.

Sue

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I have a care plan and its reviewed each year by the social services, I find these harder then the DLA initial contact to be honest. My mentor was with me over 2 hours asking me very highly personal questions about how I cope even mentally, and by the end of it would leave me drained. I have had about 7 of them now, and I am up for another one end of February. I get Direct Payments.

The thing is too, i have a personal assistant but i also use aids too. she isnt with me 247 i am only allowed so many hours. I would be lost without her, as she gets me out and about as well.

I think EVERYONE who has MS and has the need for DLA or PIP, for care and mobility should contact the adult social services team, and they should come out and assess for direct payments. Not enough people are actually taken on DP and there is the money out there. I wish they would, it can help in so many ways.

So thanks Susi for raising that. Apply for Direct Payments if you have a need for PIP personal care then you should be able to get Direct Payments too.

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I was told DIrect Payments are means tested, can you or anyone else confirm or deny this?

Jan x

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I’m pretty sure they are. Any care you receive from social services has two elements to it (as far as I know): your care needs is the first element, the second is your financial assessment. The financial assessment is slightly different from a DWP means test, but in essence is what you need versus what you have.

But the point made is that a care assessment may be stressful, but also might help with your PIP application.

Sue

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Thanks for further explanation everyone.

You`ve made me realise that when I am asked to claim PIP, I should enclose my care package information.

I have been on Direct Payments for 4.5 years. I started on 8 hours a week and it has been increased as my needs became greater.

I was means tested for it.

My hubby bears the brunt of looking after me. He lost his Carer`s Allowance when he became a state pensioner!

I have a morning carer, who gets me up, toileted, showered and dressed…plus does my exercising, moisturising…to ensure I dont get pressure sores…something I am terrified about! I have 2 other ladies who take me out sleep over and take me on short breaks. This respite time gives my hubby a break. To be honest, I dont know how he keeps going, with his RA.

I cannot be left alone for more than about half an hour…this is because I never know when my bowels are going to demand attention. And I need full help with that!!!

I do use a lot of appliances ie wheelchair, ceiling hoists, shower/commode chair, recliner chair, pads, catheters, a profiling bed…but I need help to use all of these.

We have a 16 year old camper van, with an electric lift on the back for me. We worry when MOT tie comes, as we have no savings, but usually end up borrowing money for repairs. We`re thinking of replacing the van, but it would have to be on a loan…worry, worry, worry…you all know about that, I know.

Good luck to everyone when you go over to claim PIP, or are waiting for that dreaded envelope to plop through your letter box.

luv Pollx