Personal Independence Payments

Julie Hilling Excerpts

Tuesday 22nd January 2013 Westminster Hall

[Julie Hilling (Bolton West) (Lab)]

It is a pleasure to serve under your chairmanship, Dr McCrea. I am very pleased to introduce this short debate about personal independence payments and blind and visually impaired people, because although the Government have made some very welcome improvements to the descriptors in relation to people with sight disabilities, many questions remain, and I am afraid that my speech mainly consists of questions.

The principle of disability living allowance and—one hopes—of PIP is that it goes a little way towards levelling the playing field, enabling disabled people to do the things that non-disabled people take for granted. As my constituent, Alison, told me:

“Many blind and partially sighted people rely on DLA to meet the extra costs they face every day as a result of their sight loss. The help they get from DLA is not a luxury; it means that they can live independently. Without it, they would be unable to do everyday things that people with sight take for granted, like being able to get out to do food shopping, getting to doctor or hospital appointments, being involved in local groups, looking for work; in short, living a life that enables them to do more than just stay at home.”

So my first question to the Minister—it is one that has been raised with me by a number of people—is this: do the Government have any intention of means-testing PIP now or in the future?

The Government state that the receipt of PIP will be based on an assessment of individual need, and the support required as a result of the particular health condition. The new assessment will focus on an individual’s ability to carry out a range of key activities that are necessary to everyday life. But will the assessment be truly based on the needs of an individual or on the “condition” that they have?

We all know that disabilities can affect people in different ways. The first constituent who contacted me about this issue—she did so well over a year ago—is Margaret. Margaret progressively lost her sight over a period of time. Initially, she continued to work and even went to college. She used to take the local bus service, but she found that impossible as she was reliant on drivers seeing her white stick, and slowing down to tell her what number bus they were driving and whether it was the bus she was waiting for. Such experiences became too much for Margaret and she developed agoraphobia, making her unable to work.

Margaret is reliant on the DLA she receives to interact with the outside world and to communicate with her extended family, many of whom live outside her area. She has enhanced audio-visual equipment on her TV and computer, which allows her to send e-mails and enjoy TV programmes. That makes life just a little bit more bearable for her.

[Ms Margaret Ritchie (South Down) (SDLP)]

I thank my hon. Friend for giving way and for securing a debate on this important subject. Does she agree that PIP assessments must assess adequately the needs of blind and visually impaired people, and that there is a need on the part of Government to recognise properly the extra costs of mobility for people with severe sight impairment?

--- Later in debate ---

[Julie Hilling]

I thank my hon. Friend for that intervention, and I will go on to talk in much more detail about some of the issues that she has raised.

Going back to my constituent, Margaret, she says that without her current rate of DLA she would not be able to afford the TV and internet package that she has, which would make her even more isolated from family, friends and the rest of the world. Her partner and carer, Jim, suffers from serious mobility problems; effectively, they care for one another. They are very worried about the potential effect of PIP, and they are also worried that some bright spark at Atos or the Department for Work and Pensions will actually declare Margaret fit for work.

Let us compare Margaret with John, who has been blind from birth and depends on his DLA to live independently and get to work, or with Michelle, who lost her central vision in 2005 and took a while to get back into employment. Michelle told me that she is registered blind, but apparently she is not blind enough to qualify for higher rate mobility, although she uses a long cane and frequently falls over. There is also Barbara, who had to leave nursing in her early fifties because of deteriorating vision but who then worked part time as a support worker to blind and visually impaired students.

We know that eye conditions can be very different: some rob people of central vision; some block out other parts or make looking at life like looking through lace curtains; and some cause a loss of depth of vision. There are many different ways that vision can be affected. So my question for the Minister is whether PIP will be flexible enough to focus on individual needs.

Peter also contacted me to raise concerns that blind and partially sighted people who cope with their condition may be penalised and lose benefits because they have made the effort to cope and have been able to do so. He is worried that people who have coped in the past will now refuse to cope, so that they can retain benefits. What is the Minister’s view on that?

Let us focus on mobility for a moment. The criteria refers to familiar and unfamiliar routes, stating that an individual who qualifies cannot follow the route of an unfamiliar journey without another person, assistance dog or orientation aid, or cannot follow the route of a familiar journey. John and others have talked to me about the reality that, for people with severe sight loss, there is no such thing as a “familiar” journey. Let me quote him:

“What is a familiar route? For me there is no such thing as a familiar route. For me, “familiar” is based totally on sound and feel. These constantly change. No route is the same two days running - disruptions are caused by wind, rain, people and traffic and I cannot use sight to check that it is safe or to update my knowledge of the changing environment en-route. Feel, via a long cane, is disrupted by ice, snow, leaves and standing water which disguise important orientation points like kerbs and tactile paving. “Bin day” turns pavements into dangerous, practically impenetrable obstacle courses with heavy randomly placed bins. Despite Highway Code regulations, cars are often parked with impunity well onto the pavement, vans leave ramps down and rear doors flung wide open. These obstacles are silent, invisible to me. With no sight, no auditory warnings, I regularly walk straight into these and have the scars to prove it. There is a limit to the amount of adapting one can do! I am vulnerable when asking strangers for direction. They may be ignorant or undesirable. I have never successfully, independently accessed a supermarket because the act of moving around brings me into contact with all manner of objects and people which are in close proximity. I’m not aware until I have actually hit them. This is neither appropriate nor socially acceptable behaviour and causes me great anxiety. Trying to travel on a bus or a train throws up the challenge of accessing transport information and bus stops, finding the right bus, recognising stops, finding a space to sit or a person to ask. A talking mobile phone is indispensible but very costly.”

John very kindly took me on the “familiar” route from his house to the main road, which was an absolute education for me. Because he needed to access different surfaces to understand where he was on the route, he was unable to take the shortest route and in fact some of the places that he ended up walking were, for me, far more dangerous than the straightforward route; however, he needed to access different surfaces. In order to cross a piece of land diagonally, he had to ensure a piece of wall was in the middle of his back at just the right angle so that he would end up at the right position for the next stage of the journey. A walk that would take an able, sighted person 10 minutes took him about half an hour.

I appreciate that, with the change in descriptors, John will be entitled to the higher rate of mobility, but what about Michelle? She only has peripheral vision and cannot see at night. As for the daytime, she said to me:

“If I see a puddle, I don't know if it’s a hole or a puddle.”

I have mentioned Barbara, who is a long-cane user and who has talked to me about hazardous journeys where, for example, there are shared pavements or traffic lights that do not have audio or tactile light-changing indicators. Of course, there are also cyclists who do not adhere to lights or—it seems to me—any other elements of the Highway Code, and of course they are another danger. Does the Minister expect partially sighted people who always use a long cane for familiar and unfamiliar journeys to qualify for the higher rate of mobility?

Concern has also been raised that the criteria of being able to do something reliably—safely, to a necessary and appropriate standard, and repeatedly, in a timely manner—will not be in the regulations. They are welcome descriptors, but how can the Minister assure us that those criteria will not change if they are not explicit in the regulations?

[Anas Sarwar (Glasgow Central) (Lab)]

I thank my hon. Friend for giving way and I congratulate her on securing this important debate. As she knows, guidance notes for the PIP assessors play a key role in ensuring that we get a fair deal for those who are blind or partially sighted. Will she press the Minister to publish those guidance notes as soon as possible?

[Julie Hilling]

I thank my hon. Friend for that intervention, because it is really important that those guidance notes are printed. However, I also question whether we actually need to put those criteria in the regulations themselves.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Lady for giving way and, like other Members, I congratulate her on bringing this matter to the House. The Royal National Institute for Blind People and Action for Blind People have both indicated that they will be able to help people to fill in forms. Does she feel that the Government should consider assisting those organisations to help people to fill in forms and to get the forms right, so that the assessment can be right?

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[Julie Hilling]

The hon. Gentleman raises a really important issue. All of this—particularly with the computerisation of the forms—will be far more difficult. These things are hard enough for people with visual impairment, but they will become even more difficult. Organisations that support people with disabilities are themselves facing tremendous cuts.

As Michelle told me—this is demonstrated by John’s journey time—everything, including cooking, ironing and inspecting food, takes a person with visual impairment longer. What weighting will be given to the time element?

I turn now to the daily living component. Many people have spoken to me about the extra costs of being blind or partially sighted, but some of those costs do not appear in the assessment criteria. A number of people talked about the damage caused to clothing by catching it on railings or overhanging trees, and by falls and such like. There seems to be no recognition of such additional costs.

The assessment criteria appear to award a relatively low score for aids and appliances. The Government state:

“This recognises that the majority of aids are relatively low cost”.

Blind and partially sighted people would hotly dispute that the majority of their aids are low cost. I have mentioned the talking mobile phone and enhanced audiovisual equipment on TVs and computers. Specialist IT software and hardware are expensive. What about talking scales, magnifiers, Braille machines, accessible telephones and all the other devices that people need to lead their lives? Even a white cane costs more than £20. Has the Minister considered other funding sources that could assist blind and visually impaired people if such costs are not met through PIP?

As regards cooking and preparing a simple meal, I am not clear which category blind and visually impaired people could expect to find themselves in. If they can only put a meal prepared by someone else in the microwave, what would they score?

Probably the most significant element in this section for blind and visually impaired people is the cost. By the nature of their disability, many will be unable to find the bargains that sighted people will. They will also have difficulty with use-by dates, and they will often not be able to see whether food is fit to eat. John told me he has to purchase ready-chopped, ready-grated cheese and ready-prepared meat. He has to buy in single-use portions, otherwise he will subsequently not be able to tell whether the food is fit to eat. Of course, all that makes food far more expensive. Is that taken account of anywhere?

What about the washing and bathing section? Focusing only on washing and bathing takes away the elements of grooming. What happens to those who need help with shaving, doing their hair or putting on make-up?

In the dressing and undressing section, will the criteria relating to needing assistance to select appropriate clothing apply to blind and partially sighted people who need someone to prepare their clothing in advance, even if they can dress themselves on the day because their clothes are already sorted by colour and type?

On reading and understanding symbols or words, will the Minister confirm that someone who can read at home with a magnifier, but who cannot read labels in shops or see signs in the street, will be deemed not to be able to read at all?

As regards engaging with other people face to face, what happens with blind and partially sighted people who need someone there to describe the environment? Would they be covered by the words

“Needs prompting to engage with other people”

or

“Needs social support to engage with other people”?

Of course, other, additional costs are involved in keeping a safe, clean home environment. Will allowance be made for the additional costs of paying people for cleaning, laundry and ironing?

Although the debate is about PIP, I ask for the Minister’s indulgence because I also want to raise concerns about people such as Alison losing incapacity benefit and being told they are fit for work. There is no denying that many blind and visually impaired people work, but some are unable to. Are blind and visually impaired people being put into the work-related activity group or taken off employment and support allowance altogether? I have received reports that they are losing DLA. If benefits are supposed to be about what people can do, and not their condition, how can such decisions be made?

Finally, Atos does not have a good reputation for evaluating the needs and capabilities of ill and disabled people. Following the Atos debate, one person wrote about his experience, saying:

“I suffer from RSD/CRPS”—

reflex sympathetic dystrophy/complex regional pain syndrome—

“(an incurable chronic pain syndrome in both feet) which leaves me in constant pain every day and has reduced my mobility. I scored 0 points at the WCA”—

the work capability assessment. He continued:

“You have probably heard of the artistic license the Atos”

health care professionals

“take in documenting the Work Capability Assessment. Mine was no different. The HCP missed out relevant information I divulged in relation to pain, mobilising and standing and sitting. None of the timing in the report was accurate and he even went on to add information about me that I never stated. Mercifully I covertly recorded it all so have an accurate record”.

That is the sort of experience that many people are reporting currently about their Atos assessment, so blind and visually impaired people are rightly worried. How will Atos be monitored? Will the destination of blind and disabled people migrating to PIP be logged, assessed and reported?

As the Government have stated, the likely outcome of the assessment of DLA recipients under PIP is that 510,000 people will have awards increased, 270,000 will have awards unchanged, 510,000 will have awards decreased, and 450,000 people will have no award. How many blind and partially sighted people does the Minister expect will gain, lose or get no award?

I apologise for presenting so many questions to the Minister, but I hope that she will be able to answer the concerns of my constituents and the thousands of other people who will be affected by the changes to benefits.

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[Esther McVey]

The hon. Gentleman may not know that the people seeking the award can say how they would like the form delivered to them and in what context. If people so wish, they can be accompanied by someone from a charity or organisation or by a friend to help them with the assessment. The process is about finding out as much as we can about the individual to help with the assessment and the decision so that we can give the correct award. Again,

“reliably, repeatedly, safely and in a timely manner”

is key to the decisions—that phrase is in the guidance and in the contract with the providers. The hon. Member for Bolton West asked whether that could be put in regulation, and I announced before the Select Committee on Work and Pensions yesterday that we are examining whether that would be of benefit. The matter is with lawyers at the moment, because we do not want to introduce something that could go against what we are seeking to do, to ensure

“reliably, repeatedly, safely and in a timely manner”,

which is key to the assessment. We are therefore looking at whether it can be put in regulation or whether it is better staying in the guidance notes. The hon. Lady also asked about those notes, which will be published as soon as they can be, possibly by the end of the month.

This is a principled reform, which we have developed in consultation and collaboration with disabled people. We have listened to their concerns, and those of their representatives and organisations, and we have made a significant number of changes as a result of the feedback from groups that represent visually impaired people. Indeed, that was recognised by RNIB, which stated in its report to the secondary legislation scrutiny Committee that

“the final criteria include a number of significant improvements for blind and partially sighted people.”

We were told that our draft communication activity did not take appropriate account of the barriers faced by people who cannot access written information. As a result, we introduced an additional activity to assess ability to read and understand signs, symbols and words. Therefore, someone who is completely unable to read because of their disability—for example, because of blindness—will get eight points towards their daily living component score. The score from that activity alone will mean that they get the standard rate of the daily living component. That is only one of the criteria; there will be a further nine in that section.

We also acted on the feedback that the effect of visual impairment for people who use long canes was not appropriately reflected in the mobility activities and that the barriers such people face are similar to those faced by people who have a support dog.

[Julie Hilling]

I appreciate what the Minister says about people who are totally blind, but what about those who can read at home only with the use of a magnifier? A magnifier clearly cannot be taken to the supermarket or into the street. Will such people be deemed unable to read?

[Esther McVey]

That will be recognised, because what an individual can do inside the house with a magnifying glass might be significantly different from what they can do outside the house, such as following a journey, reading signs or reading labels in a shop, all of which have now been taken into consideration and will lead to points being accrued during an assessment.

The final draft of the assessment criteria includes specialist orientation aids, such as long canes, in the “planning and following journeys” activity. Therefore, someone who is blind and needs to use a long cane to follow journeys, even in familiar places, will receive 12 points, which will qualify them for the enhanced rate of the mobility component.

We have acted on concerns about the speed of reassessment by extending the reassessment timetable, so that we can learn from the early introduction of PIP by fully testing our process. We will be able to consider the outcomes of our first independent review in 2014 and act on its findings before reassessing the majority of current DLA claimants. The extended strategy means that the main bulk of reassessment will not start until autumn 2015.

[Julie Hilling]

rose—

[Esther McVey]

I will give way, although time is running out.

[Julie Hilling]

I thank the Minister for her generosity. On mobility, what about people who are severely visually impaired but who have some vision and who need to use a cane for familiar and unfamiliar journeys? Will they be entitled to the highest number of points?

[Esther McVey]

Again, the benefit is based on the individual, so I cannot give an all-encompassing answer. We have taken on board all the factors that have been raised today, and they have been reflected in the assessment. We have made that very clear, and each person will be viewed on how they are affected by their condition. The likelihood is that the answer is yes, but we have to view people as individuals. There have been strong representations from all the blind charities and partially sighted organisations, and those representations are reflected. The news of how we have changed the assessment has been welcomed by the groups themselves.

We are also seeking to learn from the experience of delivering the work capability assessment—and, yes, from the failings that we have had to address—to ensure that we get PIP right from the start. As part of that, we are looking closely at the findings of both the independent reviews of the work capability assessment by Professor Harrington to see where we can improve the design of the PIP claim and assessment processes to make them better, more effective and a more positive experience for claimants.

I hope that I have reassured hon. Members that we have listened and acted on the concerns of visually impaired people and that PIP will take appropriate account of the barriers that they face on a daily basis. As material on the RNIB acknowledges, the changes now mean that the

“blind and partially sighted should see their needs recognised when PIP is introduced.”