As carefully controlled workshops which appear designed to justify using costs to determine PIP awards are held by the Timms review, Benefits and Work is asking readers to give their opinion.
We want you to take a few seconds to answer a single question and, if you wish, make a comment afterwards. Whatever happens, Timms should not be the only source of feedback on this idea.
The survey is now closed. Read more about the results here.
You can also read a selection of comments from the survey below.
Comments
“It is a cumbersome, difficult, administrative nightmare.”
“I already use a similar system. I pay most of my PIP to the council for social care and any transitional protection from universal credit.
If I have disability related costs I may claim them back.
It is a cumbersome, difficult, administrative nightmare.
There is little recognition that needs and costs change from year to year.
There is little flexibility and you have to argue your case for everything you buy or use.
Claiming back every cost is difficult and so while larger costs get recouped, smaller ones don't. These can add up to hundreds of pounds each year.
I believe the same would happen under the proposed system. Larger costs might be considered, but smaller individual ones would fall through the gaps even though they add up to a considerable amount.
Many costs would not be covered at all.”
“I dont have the energy for added admin.”
“I don't believe everyone's needs will fit neatly into these categories. What if I need the heating on more than another household. What if I have equipment using more electricity. What if I need special food, or need to pay to have groceries delivered to my home. And I doubt within these categories they will cover everything we need. I also have an energy limiting condition and I fear the admin surrounding this. I barely have enough energy to exist in my own home, I dont have the energy for added admin. ”
“Because being bedbound incurs much greater costs than a walking stick.”
“Because being bedbound incurs much greater costs than a walking stick. I have to buy microwave meals and prepared vegetables. Pay a cleaner and for a carer. All my shopping comes with delivery fees. My electricity bill is higher because of equipment I rely on. I need the heating on all the time in winter. I have to pay a gardener and handyman for things I could have done myself.”
“It gives them independence and allows them a sense of dignity.”
“On some toilet doors in supermarkets signs declare that not all disabilities are evident. There are PIPs recipients whose lives are seriously impaired and will not be assisted solely by material items. They may require support of an emotional nature and shelter from a world that to them is frightening. PIPs can assist them acquire caring and protection given by a family member, or friend, without making them feel emotionally or financially dependent on that care giver. PIPs, for these people, does what it says on the tin. It gives them independence and allows them a sense of dignity.”
“how long do you have to wait to be reimburserd?”
“My incontinence items come to over £100 if I don’t have Money to buy them what am I supposed to do.And how long do you have to wait to be reimburserd?”
“We should be able to spend it on what we think is necessary”
“We should be able to spend it on what we think is necessary not what the government thinks. It pays for cleaning, Ironing. It pays for the ongoing costs of my transport. It pays for my shopping to be delivered. It pays for the carer I have to help with bathing. ”
“They can only be met by having a cash benefit.”
“While fixed costs could be relatively easily reimbursed, although the administration of such awards would have to be vastly superior to what happens now and would up front payments be needed, other variable ongoing costs are indeed variable. They can only be met by having a cash benefit.”
“my food bill is much higher than an average person’s”
“This would only partially help me, my disability means I have reduced mobility and high dietary needs, so my food bill is much higher than an average person’s but the way this support would be implemented, I wouldn’t receive financial support for the dietary / food needs”
“one size does not fit all.”
“I need to have regular weekly physiotherapy and/or osteopath appointments, which is not covered in 1. above. Each disabled person can have differering needs as one size does not fit all. ”
“Bespoke solutions require thinking outside the box”
“Costs are individual, there is no ‘one size fits all’ and much of the support I need doesn’t fit those categories. Services and products wouldn’t all be obtainable from government-approved providers. Bespoke solutions require thinking outside the box, which a voucher system cannot accommodate. ”
“It's not just physical items we need help for.”
“It's not just physical items we need help for. Extra energy costs because I need to keep warm. Help with cleaning. Taxis because I can't use public transport ”
“limiting to personal freedom and choice”
“PIP is to help a person with disabilities to live independently. Aids and adaptations are available via local authorities, NHS or charities. PIP is currently used to pay towards support contributions and transport. Is is way to complicated and limiting to personal freedom and choice to be used as Timms review suggests.”
“Won’t be flexible enough to cope”
“Can’t control fluctuating costs ie fuel and transportation. Look at the current issues with these. Won’t be flexible enough to cope”
“Doesn't take into account extra heating, specialised dietary foods.”
“Doesn't take into account extra heating, specialised dietary foods. cost of hiring personal care, house cleaning, clothes washing etc.”
“People who are really struggling don't have the luxury of separating PIP out”
“This will mean that the poorest will suffer as a lot of people on PIP use the money to pay bills, repay debt as well as essential expenditure like food and energy costs.
People who are really struggling don't have the luxury of separating PIP out for just disability related expenses. Often it is regarded as family money and is spent in the household.
Majority of disabled and people with long term health conditions are already disadvantaged by not being able to earn as much as people without poor health so it is unfair that the new proposal means they will end up with less cash to spend on what they choose. ”
“many of which cannot be easily measured”
“I do not support this proposal because PIP is intended to recognise the extra costs and challenges that disabled people face in their day-to-day lives, many of which cannot be easily measured through specific categories such as equipment, transport, clothing or bedding. Restricting awards to a set contribution towards selected costs risks overlooking the wider impact of disability, including fluctuating conditions, loss of independence, and additional expenses that vary significantly from person to person. I believe this approach could make the system less fair and leave some disabled people without the support they genuinely need.”
“some equipment is very necessary to retain as much independence as possible”
“The additional cost of equipment and particularly consumables, eg continence products, puts a lot of additional financial pressures on the disabled. Also some equipment is very necessary to retain as much independence as possible”
“The PIP Award enables me to purchase aids and equipment”
“I think that individual PIP awards needs to be supported by The Timms Review, as there are many people like myself who are unable to manage quite a lot of things in daily life without the use of aids or equipment and support from others to enable me to do things, like going out, getting showered and dressed, cooking or chores around the house. The PIP Award enables me to purchase aids and equipment, to be able to employ a cleaner, in order to take some of the pressure off my husband, who works full-time; is my carer and trying to do all the daily chores around the house. These are just a few of the things that people with a disability have to deal with on a daily basis. I struggle daily and it enables me to have some access and freedom, able- bodied people take for granted. ”
“I don’t understand what this means.”
“I don’t understand what this means. People are already allocated PIP to areas of needs. I worry this could become a voucher system and also restrict the items that can be bought - ones that are personal and have the expertise for the individual. We need to have choice in what adaptions and aids we need not one size fits all - it doesn’t.”
“I would support it if all additional costs were included.”
“Depending on the disabilty there are far mor items which incur additional costs ie food & food preparation, paying for home/windows cleaning & garden maintenance. I have to purchase only ring pull cans as I am unable to grip a can opener and these are usualy only found on branded goods. I would support it if all additional costs were included.”
“people themselves should have control over how they spend their money.”
“I do not feel there should be any changes to the cash awards as people themselves should have control over how they spend their money.”
“it really depends on what their definition of " fair contribution" is.”
“I support this idea but it really depends on what their definition of " fair contribution" is.”
“There is no mention of helping people with disabilities who seek private help”
“There is no mention of helping people with disabilities who seek private help as NHS waiting lists are so long and some people have to pay for private care as well as having to use their pi to make u the short fall of things like food and rent and other bills. ”
“My needs fluctuate and atm I can use my pip flexibly to meet my needs.”
“I have an acquired brain I jury, I need support with equipment and aids, mobility and transport and clothing and bedding. My needs fluctuate and atm I can use my pip flexibly to meet my needs. My needs could be very very different from someone else with an acquired brain injury so no no no we can't compartmentalise our needs into 3 arbitrary tick box areas. A very bad idea indeed, what about communication needs, support from a carer, emotional support, dietary needs, exercise needs and help with cognitive tasks. Humph. ”
“There are many folk with hidden disabilities”
“There are many folk with hidden disabilities..eg auto immune diseases..who suffer chronic disabling pain but that will not always be visible. They just confine themselves to their homes exhausted, fatigued, in awful pain, physically and mentally unable to function as per norm. They may not use ‘aids’ as nil can be offered. It is time these people were considered ”
“A fair contribution cannot ever be decided by someone else”
“A fair contribution cannot ever be decided by someone else, what might be good value for money differs completely between people a d their circumstances, and no 2 people with the same disability will ever have the same costs, let alone the frequency of needing these things. Additionally, procurement via the government rarely ends up benefitting the people who need it most or provides things at the best cost for the quality required so I wouldn't trust any forced suppliers.”
“There are other costs involved such as help from friends”
“There are other costs involved such as help from friends which wouldn't be costed yet play an important role! It's not just about physical aids! One may not pay a carer as such but show appreciation by buying them a present, a meal or something they may need. The support network of a disabled person is importance not only for the help they get but also with the uplifting emotions connected with interacting with other people. Timm's ignores that. ”
“Insufficient information to make a valid judgement.”
“Insufficient information to make a valid judgement. Needed are the what, why, how, when, who?”
“What about other costs”
“What about other costs - heating, in person help with care, electricity for extra washing, help with outside activities”
“I know better what I need”
“Because when I’ve received some aids they are not good for purpose and I know better what I need than even a doctor knows I’m the one suffering not them”
“I am frightened by this as it can be disempowering.”
“I am frightened by this as it can be disempowering. It could mean a system protecting certain needs inti insidious with different disabilities instead of the individual making choices about their needs, how to meet them and which needs, indeed, to direct the already limited PIP towards. ”
“There are so many factors which make up a quality of life”
“The Government cannot make the assumption that mobility and equipment/aids is all you need as a disabled person. There are so many factors which make up a quality of life which as a disabled person you may not have access to. You may suggest a subscription to a hobby magazine which might bring joy. An assessor may decide this isn't a suitable expense. How can that be fair? I agree that the current system needs amendments but no one should be able to tell you how to spend monies awarded to you as an individual.”
“my money goes towards buying gluten free food”
“We need much more then this , my money goes towards buying gluten free food which can be 3 x the price of normal food , money to pay someone to come and help me clean my house . My husband doesnt get any carers money , buying equipment that will let me have access to my garden which is beneficial to my wellbeing . Having the access to be able to attend support group meetings . Being able to buy furniture for my use only that will allow me to be able to get up and move when my body will allow. ”
“People may need extra grants on top of their usual PIP”
“People may need extra grants on top of their usual PIP for expensive equipment, which would be hard to save up for.”
“Complex disabilities often have varying needs”
“Complex disabilities often have varying needs and related aids, treatments etc which can be difficult or impossible to foresee from one month to the next. Flexibility in simply cash funding of this support is both easier for a government level dispersal and for the recipients to be able to buy as they need save toward an unusual but relevant solution to best manage their quality of life”
“I use PIP to help pay for my monthly therapist”
“I use PIP to help pay for my monthly therapist and to purchase specific aids for my condition which probably won’t fall under their rigid categories. I also have more than one condition.”
“Disabled people should be able to use the money for whatever it is needed for.”
“Disabled people should be able to use the money for whatever it is needed for. Also, equipment, aids etc clearly outs the focus on physical manifesting conditions whereas others, such as Neurological, eg Autism and Dementia are just as important but may not require such as equipment, especially Dementia early stage but may well need paid for help in other areas. ”
“it costs a lot of money to be disabled”
“There are so many other things needed when you are disabled- various body supports - side panels for beds - toilet rails - extra incontinence pads - support cushions and so much more- and a lot of these items are not always suitable and because in my case I can’t just go into a post office and send stuff back - it’s hit and miss- you can’t always send some things back after you’ve used them - it costs a lot of money to be disabled- we can’t always wait for them to be granted to us from social services etc. and have to buy things ourselves to help in the now not in the future ”
“We need more recognition of the hidden costs”
“Because this is based on nice easy to quantify physical costs. We need more recognition of the hidden costs that go with hidden disabilities like ability to go out socially and loss of earnings due to not being able to get a job because we can’t process or communicate in the way expected.”
“this could work, as an element of PIP”
“I think this could work, as an element of PIP, but it's all in the details. If people end up having their choice restricted (eg only being able to use certain approved suppliers or from a list of items) then cash would be better. But there are some areas where the cash awarded by PIP nowhere near meets the actual costs involved to the person, and having an award that was more closely reflective of actual costs, or that met them directly (similar to DSA) could be helpful. Some disabilities don't have direct costs in these categories - many people long term physical and mental health conditions use PIP money to plug gaps in health and social care provision eg by paying for care, support or therapy, or to help manage the indirect costs of fluctuating symptoms (e.g. making plans and needing to cancel/adapt). So awards would need to be very flexible and personalised for a costs based model to work.
”
“the disability affecting that person's or their carer's ability to work”
“Many disabilities don't accrue additional costs due to specific purchases like equipment, clothing, bedding etc but due to the disability affecting that person's or their carer's ability to work or earn enough to support themselves. The additional costs of my daughter's disability- brain injury, learning disability, memory issues - are due to me having to give up my job and care for her, seriously impacting our household income which surprisingly the weekly carers' allowance does not cover! Without PIP, we would have seriously struggled financially. ”
“It excludes services”
“ It excludes services which are a large part of the assistance necessary to improve the living conditions and well-being of people with a wide range of disabilities. On the face of it these categories follow PIP descriptors for daily living and mobility but have the wrong focus. ”
“i want to maintain the illusion that i have some control over my life”
“because i want to maintain the illusion that i have some control over my life
my costs vary depending on new aids being brought out, transport etc”
“my mobility costs vary highly from week to week”
“I have a extremely rare condition, my mobility costs vary highly from week to week depending on the number of emergency hospital admissions I have. How on earth can they fairly calculate those costs. Along with other fluctuating costs.”
“to prove their “costs “ or “expenses “!”
“It’s very unfair to expect disabled people to prove their “costs “ or “expenses “! Is it not enough to suffer from a life changing disability every single day without being constantly assessed & criticised. ”
“How would they assess the costs for someone who actually cannot do things”
“It's almost impossible to assess these extra costs - suppose I don't go out & can't access shops, cafes etc because of disability, I end up spending less on transport than other people because the help I would need to get out just isn't available. How would they assess the costs for someone who actually cannot do things however much help is provided?”
“the necessary aids”
“It’s not just a case of having the necessary aids.
Maintenance and paying for services is a huge cost, as are necessary products for self care that don’t come on prescription. These are additional needs that able bodied persons do not usually need. ”
“PIP money to cover the cost”
“If a person requires "aids and appliances" to be installed at their home, it is surely more beneficial to the claimant for PIP money to cover the cost of installing these aids and appliances rather than simply awarding points that may or may not add up to an award. Similarly, if a claimant needs on-going therapy, assistance or supervision which incurs costs, these should also be covered as part of the PIP award. ”
“multiple, varied and not always obvious.”
“The extra costs of living with a disability/chronic illness are multiple, varied and not always obvious. They are also constantly emerging and therefore cannot be fully anticipated. A rigid system that apportions costs according to a set of defined categories as opposed to a sum of money that can be applied flexibly, will almost certainly leave claimants with a host of unmet needs. According to how such a system is managed, it could also cause a lot of stress in terms of administration and paperwork relating to showing the need for set categories of help.”
“Who would determine what is “fair””
“I’m unable to say whether I support the suggestion about a “fair contribution towards costs of equipment and aids, mobility and transport, and clothing and bedding” as this is still incredibly generic. Who would determine what is “fair” and would this be based upon a very clear, understandable set of qualifiers?
I am sceptical about this change being anything except harmful to disabled people.”