Wednesday 18 May 2011

Responses Needed - PIP Assessment Criteria

The draft Assessment Criteria for the new Personal Independence Payment (PIP) were published here last week, along with some related documents and the draft regulations. The Broken of Britain intends to read through this material and set out our reply, but we need your help. We would like you to scan the assessment criteria and tell us whether the test would account fairly for your particular disability.

The PIP Objective Assessment Development Group will be considering comments received by 6 June 2011 before they test the likely impact of the draft criteria during the summer. You can write a paragraph here, or email with your arguments, and any other points that you want to make. If you want to send detailed comments of your own, send them to directly. Whether you send your own comments, or contribute to ours, please get involved.


Mason Dixon, Autistic said...

On page 9 at section 6.1.1 we are shown a list of activities and the priorities they are given which will indicate the probable point allocation they will be given during the refinement period. Number 4 is 'Managing medication and monitoring health conditions' and number 5 is 'Managing prescribed therapies other than medication'. Both are given the 'low scoring' priority. But this over-simplifies the act of medication and receiving therapy.

I self-medicate my sensory issues with alcohol as there is no prescription that does this. I attend a support group which I could not have sought out by myself. I would not be able to do any of the other things on the list if I had not had help with 5 and number 4 whilst permitting some things completely rules out others at the time. I can not keep food down with a drink, but I can not plan and follow a journey following a drink.

It seems that the effects of and what it takes to medicate and receive therapy is being downplayed.

Mason Dixon, Autistic said...

Sorry I meant I could not keep food down without a drink, yet planning and following a journey(number 10) isn't a good idea after having one.

Lisa said...

I currently get the care component due to my needing "supervision" during my waking hours because of my tendency to snap my bones.

A quick skim read seems to suggest that "needing supervision for safety reasons" has gone from the criteria.

Anonymous said...

The only recommendations that i can put forward which my Tory mp thought very good were that all reviews discussions and assessments be carried out in the claimants home so that any stress levels can be minimised and also it gives the claimant the chance to have their NHS social/care worker present so that their case can be presented accurately and fairly in the interests of all concerned

Anonymous said...

The only recommendations that i can put forward which my Tory mp thought very good were that all reviews discussions and assessments be carried out in the claimants home so that any stress levels can be minimised and also it gives the claimant the chance to have their NHS social/care worker present so that their case can be presented accurately and fairly in the interests of all concerned

Anonymous said...

As for the document it is way way over my head in word jargon and means absolutely nothing you would need a first class honours degree to truthfully be able to understand that document word for word

Anonymous said...

I read it and think that it is like 90% of people will no longer qualify. This is just set out to fail so many people who need help - The Govt dont give a damn - We are scum to them - But how will we live without any help at all?

I am very upset because apart from them tightening the boundaries so that you hafta be practically dead to get PIP - It does NOT give independance to people! If they wanted to help us keep our independance they would be supporting us to suport ourselves - And in this they will be letting so many people down. This is NOT supporting people - This is dumping people who will then either die (yes I know thats what cameron wants) or they will become so ill that the NHS (if cameron hasnt killed that also) will have to pick up the tab, or local authorities who cameron has also taken all the money away from

So - WHO is left to look after us?

I keep prayihg that someone somewhere will force this evil govt to STOP this PIP crap and actually SEE that DLA is one of the best working benefits they have, but no - They just want to throw away millions of pounds and more importantly throw away so very many lives making up their own new PIP crap.

I despise cameron = and clegg - Both are pathetic losers who lied saying they would care for people like us and their smarmy faces showed their true colours when they got into office - I WILL NOT BE FOOLED AGAIN (if i am still alive that is)

Anonymous said...

fourbanks said...
The only recommendations that i can put forward which my Tory mp thought very good were that all reviews discussions and assessments be carried out in the claimants home so that any stress levels can be minimised and also it gives the claimant the chance to have their NHS social/care worker present so that their case can be presented accurately and fairly in the interests of all concerned


Oya's Daughter said...

Just re-iterating what I had said previously - and please, can we be constructive about this and actually supply what Rhydian is asking for? He puts a lot of work into this.

I find it rather worrying that in the paragraph about aids, they seem to be taking into account all aids now; granted, they do that now - my walking stick is proof positive that I'm perfectly able to get around, not that I am very unsteady on my feet and I don't venture out during the winter at ALL because the ice is too treacherous for me. Somehow, having a walking stick means I've got mobility sorted. And so, I suppose, is anyone who uses crutches, a wheelchair, wrist splints, glasses, and hearing aids. Aids seem to be treated and discussed as a CURE, which concerns me. I'm incontinent; yes I have pads, but that doesn't suddenly cure the fact I have bladder troubles -and yet that seems to be exactly what ATOS assessed, my pads didn't even get a mention. I have foam grips to be able to keep painting and drawing - take those away and I'd be down a job. But, since I have them, by the logic of the PIP criteria I therefore don't have a problem with my fingers. I would probably pass, but there are days when all I can do is sit with my hands cupped one inside the other as my fingers hurt too much to move them.

There's also the "wider scope of every day life" thing; there is nothing there about paying bills, managing money, whether they have internet access or are able to use a computer, remember passwords and PIN numbers (and this is almost vital these days), whether or not one is capable of driving or has access to mobility. I recall a sufferer of Tourette's mentioning that she has a tendency to shout out her PIN number involuntarily whilst she is at the cash machine. That seems like a very minor thing but in this day of fraud and theft, it is certainly a lot more serious than one would make out. Likewise the assumption that everyone is capable or able enough to drive, manage bills, use the internet, and so on. More to the point, that people are able to do this safely, but with so many issues of fraud and grooming, stalking and hacking accounts, it can be rather doubtful that people are either able to use the internet safely or, more to the point, have access to a computer at all. More and more of these forms are available online, but if you weren't able to get online in the first place, how would one ever apply?

It seems as if they make the leap in logic that people who do anything other than eat, bathe, and sleep aren't actually disabled. Anything which may hint at social activity or personal well-being which doesn't either directly relate to food, clothing, shelter or therapy is considered luxury and un-necessary. My mobility is terrible and the pain in my hands rather severe, but I garden (for maybe a half hour a day, with quite a few breaks, and I rarely carry anything). However, by the criteria of the PIP, if I am able to do that, I am not disabled. So by even saying I have a hobby I am probably given less points for that.

Oya's Daughter said...

Addendum: The PIP, just as DLA before it, also assumes that all disabled people claiming are single. Therefore there is never any mention of the difficulty you may have being a parent and trying to attend the needs of your child . As a disabled parent with a disabled child I am always amazed and shocked at how many cracks I seem to fall through as none of the various offices or services are designed to support disabled parents. If I was a single person, willing to live in a one room flat, I'd be sorted. But if you dare to have a partner or children, it's as if there's no coping strategy there at all - more to the point, an assumption made that you would only dream of having a sex life or children if you weren't hampered in any way by disability.

So where is the parenting/spouse/partner section of this assessment? Why is it that the difficulty of trying to take my child to anything due to mobility and fatigue is never considered? How is it that no one wishes to recognise that this means my sentence of isolation doesn't merely affect me but also my child? If I am unable to go anywhere due to fatigue, I have no support to take my son anywhere at all. No after school clubs, no swimming, I can't even attend his Christmas fete and party as I cannot get there, don't have the energy to tend him while there, and cannot get back. The idea that our mobility and care issues need to be considered wholistically is not even remotely addressed by the PIP system. The DLA didn't do this either; I would have to apply for my son, and then for myself separately, and could never discuss how my illness impact upon my son's life, or his extra needs impact upon my illness. I have never had a good answer to why disabled parenting is never even remotely considered when it comes to any disabled services whatsoever, let alone PIP and it baffles me that such a huge part of my life should be categorically ignored and not score anywhere on the PIP.

Mason Dixon, Autistic said...

Following on from Fourbanks's point about being interviewed in your own home; this was something I was glad happened under DLA. However there is a cost attached to this and it probably contributed towards the failure of the Benefit Integrity Project in the 90s after it was expanded to periodically examine claimants from all award groups and not just the higher-rate claimants. The cost meant Labour had to scrap it by 1999.

As PIP is planned to have a regular systematic review of claims in place, I don't see how they going to allow many interviews to happen at home because they'll simply run into the cost problem the last time they tried this. Even then the probable costs make this look wobbly.

I'll try to cut the chat now. People need to read the actual document and give their own feedback.

MRadclyffe said...

To attach only a low score to managing medication and monitoring health conditions is ridiculous, especially for those with mental illness. They can't talk about assessing mental and physical incapacity as equal and then ignore the fact that the former has a different set of problems attached to it.

Erika said...

Looking at 'can you cook' section,seems different as counts cooking as fresh or frozen. I get mid care DLA as I can't cook but I can just about most days throw a frozen meal in the oven, would this now be classed as ok?

Having DLA care means I can afford to eat properly if I score zero if I can put something in oven I woulnt have the money to buy proper food. You know not the cheap frozen rubbish that its a one off but something thats part of a well balanced diet to keep you well.

Only reference to moving for a wheelchair user is can you move yourself for 50m using your chair. This is again a yes or no option why is 50m the limit? Who goes anywhere 25m one way and 25m back!! Surely if this is only question how you manage it should be more realistic, how about parking near a shop distance to go into tesco get around and get back? If I can do 50m will I not qualify?? Im sure I can 50m slowly on a dead flat surface but have to use powerchair outside so this "skill" dosnt really help me but might mean I get no help with paying for my power chiar.

Not much on doing anything other than going to toilet, washing dressing eating. These are only a small part of your day people use DLA to pay for lots of things in between the use of gadets that don't come on a list. And extra expenses ie extra heating, special clothing, exessive damage to home and belongs.

Will they listen? I sent 12 pages on their last consulation excerise they were publishing resuts before the closing date, dosnt fill you with confidence that you count.

Anonymous said...

Think I am going to be stuffed! Bit unclear as to quite what it means by 'assistance' when talking about 'Managing toilet needs and incontinence' - I have a stoma (ileostomy) which often leaves me covered in you know what ..... some days it can be horrendous and take me up to an hour and a half/2 hours to get myself and the laundry and the bedroom and the bathroom sorted if I do not have anyone (which would be my daughter) around to help ... so yes, I manage it 'eventually', but not very satisfactorily really when it takes me that long to deal with it .....

Anna C said...

I can't see anything that says: Can't dress at all.
Can't wash/groom at all.
I have to wash and dress my husband daily, comb his hair, shave him etc.
Nothing about safety issues. He has regular falls. Also his behaviour can be dangerous and unpredictable and he needs twentyfour hour supervision.
There appears to be nothing about this.

Anonymous said...

... and what about the effects of chronic pain and medication on all these activities ....

Erika said...

Another point, DLA lets you state how often you need help this is more can you yes no or with help. For me I may be able to get dressed, OR put my frozen dinner and eat in OR go out for hour but its not something I would attempt to do all in one day. If I have to go out I would have help to do the rest of the things.

You know the kind of spoonie choices we all have to decide on everyday, just being assesed if you can or not dosn't represent a typical day. I may be able to tick all boxes but in the real world could only do one per day or so at a time. This "simplifying" process does not take multipy tasks into account.

Anonymous said...

Part 1 daily activities - planning and buying food and drink

As someone caring re a mental health condition and a physical condition which affects his thinking, I think the definition of buying should include the step of going out to purchase that food.
It says it doesn't include any physical ability as it is dealt with in 'getting around'.

I know at assessment this question would have confused the person I support - He would answer yes - he can plan and buy food and drink unaided.

But yes he can eat and drink for himself. Yes he can go to the fridge and find something, when he isn't confined to bed. Yes he could determine how much money is required to buy food & drink and assess availability of money. So in theory, yes he can plan and buy.

But 9 days out of 10 he wouldn't be able to leave the house to make that purchase. Or he may only be able to make a purchase by nipping out at midnight to the all night shop when there is noone else around. Or he might go out to make the purchase and then something happens that he can't cope with so he comes back empty handed, or having bought something totally irrelevant.

The statement at the start also suggests that the question is about an ability to 'prioritise the money required for purchasing... food'. This implies something that includes the whole personal budget. Yet none of the indicators include anything about whole budgets. Holding the budget for food is very different from holding the whole household budget.

This question, which is aimed at people with conditions which affect mental/cognitive functions, doesn't reflect the reality of the activity.

Anonymous said...

Activity 2 - preparing food and drink

This whole section only refers to 'a simple meal/snack'. There is nothing about frequency.

Is this once every 3 hours or once a month? A huge difference! The effort of preparing a simple snack may prevent me doing it again that day - but there doesn't seem any consideration of that.

Anonymous said...

I have just glanced through this new piece of detritus, it is nothing more than an updated denial document, it is all about implementing more factors to deny people their rightful benefits.

I'm affraid to say I get angry when it say's we have had several disability organisations and individuals who have helped design this new document, I believe the disability charities should and must refuse to partake in anything the government wishes to implement.

They are obviously making the descriptors harder, basically they are trying to redefine what the majority of people would consider to be a disability.

If the disability lobby do not put an end to this discrimination by this so called coalition then we might all go jump off the clifton suspension bridge, life is just about bearable now with the benefits we get, If those are taken away it's the end,Nazi Germany here we come.....

Anonymous said...

I have read the initial draft of assessment criteria and would like to give some feedback, as someone who suffers from paranoid schizophrenia.

Firstly, I would like to say that schizophrenia is a severe mental illness, which will never get better, so should not need re-evaluating.

Secondly, I note that it is the aim of PIPs to help people who are at a financial disadvantage over a long period due to long-term health conditions. However, I also note that the proxies for qualifying for the benefit seem to indicate that if you are well for more than six months in a twelve month period, you will not qualify at all.
These proxies do not take into account the special cases of schizophrenia, and its related condition of Bipolar disorder, because these conditions are exacerbated by stress, and it is possible to stay well for six months and more by avoiding stress. However, it is not possible to hold down a job, since the stresses involved make you relapse. As things stand currently, therefore, people with these conditions are falling between two stools, because they are financially disadvantaged and yet they may stay well for longer than 6 months and more, which all seems unfair to me if they cannot qualify for this benefit that would keep them out of severe poverty.

Thirdly, I personally would have trouble attending a medical in a place i did not know, because I can get psychotic in such circumstances, so would greatly value the possibility to have a home assessment.

Fourthly, I would like to make some points about the criteria themselves:

In general, the activities do not take account of self-neglect due to psychosis which can be caused by firstly not caring for yourself, and secondly being either too distressed or preoccupied by the points of reference and overloaded sensory perceptions. For many of the activities, I would need a category that falls between two of the categories given, not room to go into detail here.

The criteria do not take account of being a danger to yourself or other people; there surely needs to be a 'Personal Safety' activity?? Such an activity could take account of the fact that, as well as being unable to judge danger or wanting to directly put yourself in harm's way, with certain mental illnesses, like schizophrenia, you can completely lose time, not being able to recall it at all, or sometimes you can recall it at a later date.

Anonymous said...

Further to 20 May 13:13

Activity 1 Planning & buying food & drink

There is no criterion here for not being able to do the activity at all. When ill, I can't leave my room at all to buy food & drink because of severe psychosis making me too terrorised to leave.

Activity 2 Preparing food & drink

The criteria do not take account of needing continued supervision to prepare food & drink because of self-neglect due to psychosis.

Activity 3 Taking nutrition

Likewise, the criteria do not take account of needing continued supervision to take food because of self-neglect due to psychosis. When ill, I can go for long periods without eating, due to the paranoia.

Activity 4 Managing medication and monitoring health conditions

The criteria do not seem to cover wholesale self-neglect due to psychosis, or being a danger to yourself through lack of insight into your condition. When I am ill with psychosis, I do not report signs of physical ill health to medical practitioners, because I can see them as 'signs' of something happening, so I can leave them to fester. Also, when ill with psychosis I can have long periods of not remembering anything, so again it is another cause of self-neglect.

Activity 5 Managing prescribed therapies other than medication

Again, there is no way to indicate in the criteria if you suffer self-neglect due to psychosis, so could not manage such things.

Anonymous said...

Further to 20 May 13:13

Activity 6 Washing, bathing & grooming

There needs to be a category for washing, bathing and grooming with continual prompting /supervision, because when you are too ill with psychosis you suffer from self-neglect in all these areas together.

Activity 7 Managing toilet needs or incontinence

The notes say that this category covers care for menstrual needs, but it is not clear how to use the tick boxes to say what care needs you may have, for example, I would not be sure how to express the idea of self-neglect of menstrual management due to psychosis.

Activity 8 Dressing & undressing

This activity does not have a category needing continued supervision, for example due to self-neglect from psychosis.

Activity 9 Communicating with others

In the notes, I read that one of the reasons for revising DLA to PIPs is to iron out discrepancies between the way mental and physical illnesses are treated and categorised by the benefits system, but in this activity we can see that old habits die hard. Surely criterion D should score at least as highly as criterion G, because of the seriousness of the implications of being a danger to yourself or others when communication from other people when you have psychosis can be received as command hallucinations, for example, to self-harm or harm someone else. For this activity, might it be deemed fit to have the criteria that refer solely to mental illnesses to be scored on a par with an appropriate physical health criterion, so that neither type of illness is being discriminated against?

In category D, 'signiificant distress' does not seem to take account of being a danger to yourself or other people.

Activity 10 Planning & following a journey

Again there is a discrepancy here in the way that mental illnesses are not viewed as serious as other illnesses/conditions. Surely category D should be after category E, because if you can't carry out a journey at all, surely that is more serious than being able to carry out a journey that someone else has planned or assisted you with??

Erika said...

Think they are mixing it up, they asked as all what we spent DLA on and then try and make it fit a box but becasue we can't do somethings means we need money to spend elsewhere.

For example having low mobility may mean need alot more heating on, or you may be mobile but still need alot of heating on. Truth is they both need extra money.

If its going to be PERSONAL INDEPENDENCE PAYMENT it should be personal to your circumstances, Im not saying I know all the answers but fact is keeping people independant is expensive they have already said it cost to much already.

In the best world we could all submit receipts for all our extra expenses that would give them all a shock! Now that really would be a personal independence payment.

Anonymous said...

I thought it couldn't get worse & wish I hadn't read it..I have continued to relapse for a year now because of terror i've gone in to..
I have chronic temporal epilepsy with tonic/clonics.. it is physical but affects me mentally..
I have labrynthitis & chronic vertigo which is physical but also affects me mentally..
I have anxiety spectrum disorder which is mental but totally affects me physically (agoraphobia, psychosis, derealisation etc)..
I cannot do anything safely or reliably & i need constant supervision whether i get it or not..
I am presently starving & afraid to be well at all!
I see nothing about safety, supervision or consciousness!!
Also when i was only having tonic/clonics about 4 times a year i was dying because of their severity.. in handbook it suggests we recover quickly & night doesn't count.. my night seizures led to status & i have never recovered!
I'm told by my consultant I'm very ill... now my head is really messed with & it seems all the support of last 9 yrs to help me stay alive was just to prepare me for a terrible death anyway.. IT DID NOT NEED TO HAPPEN!! But here i am alone in 24/7 dread & despair & supposed to sort it all out myself.. I now see my future as constant force & it won't take much to break me & then I will be blamed for becoming psychotic again.. full of emotional pain because IT DID NOT NEED TO HAPPEN!!

Anonymous said...

I can walk in a fashion but because of epilepsy & vertigo I often can't walk, talk, see or hear so what do i put for these descriptors?! If I put no to everything which is true what happens if i'm able to walk into an assessment & have a competent conversation or if i just can't turn up??
I am intelligent but of course I have cognitive, communication, sensory, continence & all other problems.. do i answer no to all, which is true, & then get laughed at by govt as i go from being labelled as critically ill to fit for work activity??
No-one will get me out the house so i just wait to be destitute!
I have neuro consultant appt friday.. he has helped me save my life & stay balanced enough to care for myself.. now i'm terrified to go.. there will be no time to talk about my terrible descent.. i feel i have to talk only about benefits but i'm approaching point of being unable to say a word.. it takes approx 4 months now for letter to reach GP from my consultant beacause he has 1700 patients in similar position to me... How am I supposed to provide evidence multiple times a year or cope with the fallout of not being able to?
Also my problems were at least partly caused by very traumatic chilhood & teens.. How can I possibly constantly talk to Atos or Job centre+ about events i can barely discuss with doctors who've known me 10 yrs???
Feel paralysed in limbo as minutes tick towards appointment which may be only chance to sort something before called for reassessment & I can't move!!
Receiving incapacity benefit (review stated over phone 1 yr ago as 5 yrs)& indefinite high rate care, low mobility DLA...
What a long way i'm falling & IT DOESN'T NEED TO HAPPEN!!

Anonymous said...

I'm really sorry to be a pain but can my last 2 comments possibly be transfered to 'response to PiP criteria'?
I have posted them in the wrong place..
They both contain reference to 'IT DOESN'T NEED TO HAPPEN!'
The support for each other here & the work you have all put in is very much appreciated..
thankyou very much & best wishes to all..

Anonymous said...

I currently get high rate care due to mental health problems. My life is limited and difficult, I have very little quality of life.

I have just read the criteria and it looks like I will be falling into a blackhole.

I will see where this goes over the next few months, but my instant reaction was that there is always the option to end my life.

I'm not angry at their ignornace, I am just tired or fighting the "system" when all I want to do is exist in a tiny little tolerable way.

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