Below are comments from respondents to our Timms review survey on disability costs.
You can go back to the main survey page here.
“Most of my PIP isn't spent on things, but on services.”
“Most of my PIP isn't spent on things, but on services. Additional gas and electricity costs to keep me warm in the winter, and cool in the summer. The cleaner, and the nice young man who does bits of household maintenance I can't do myself every now and then (changing the lightbulbs, weeding the yard etc). Online grocery deliveries rather than being able to get the cheaper stuff from Aldi or Lidl. ”
“This would remove choice and therefore independence.”
“This seems likely to drift into a receipt-baaed model. Even is that isn't the plan, disabled people have different means of support: A family network, informal arrangements, care companies, or a mix of these. Will only care from care companies count? This would remove choice and therefore independence.
Moreover, what of other needs? PIP is a contribution towards paying for help with the things a body or mind can no longer do. In one claimant, this can cover so much from transport to domestic help. Are some, or most, of our needs to be discounted? I fear not being able to maintain my home without PIP aa it is. That's mot choice or independence.”
“extra heating and paying for private physiotherapy.”
“My extra expenses as a disabled person go beyond equipment and aids, mobility and transport, clothing and bedding. Specifically extra heating and paying for private physiotherapy.”
“I really need a mobility scooter but can't afford one”
“I really need a mobility scooter but can't afford one so would really appreciate a contribution towards it”
“Costs for many disabled people fluctuate”
“Costs for many disabled people fluctuate due to how you feel that day. Support needs are not mentioned. Disabled people’s needs are all different and often different on a day to day basis. For example, what about food for special diets, personal care costs, help with cleaning, household chores, etc. etc. ”
“it takes away a person's independence.”
“Because it takes away a person's independence. Furthermore I don't see why claimants need to discuss their private financial business with a DWP bureaucrat. The DWP - and by extension the State - is becoming ever more intrusive. This is NOT the People's Republic of China!”
“I chose my private therapist.”
“I have C-PTSD. I don't need equipment. I have used the award to fund EMDR privately as I have been waiting over 4 years for my mental health trust who still are unable to provide therapy. I chose my private therapist. If I had not been able to pay directly this would have been an additional barrier.
I am unable to work because of my condition. The award helps to pay bills that I cannot get support with. Means testing precludes me because of my husband's salary. Yet we have significant debt and barely keep afloat. ”
“The list goes on!”
“This doesn't include the support costs we incur, to do the things we cannot. Cleaners, gardeners, support workers, physiotherapists. Higher electric and gas costs, pre-prepared fruit and vegetables, continence products and extra costs of cleaning. The list goes on!”
“a learning disability is a lifelong condition.”
“I have a learning disability and am austistic and have dispraxia as well. My supports needs will not change as helps and keeps me independent as a learning disability is a lifelong condition. ”
“I do not know whether this means payments will be increased or reduced”
“I do not know whether this means payments will be increased or reduced ”
“Taking money off PIP claimants will have a devastating impact”
“I thought the local councils and adult social care already provide aids, equipment, transport, clothing and bedding for people who need them. Taking money off PIP claimants will have a devastating impact when rent/mortgage, council tax, petrol, replacement appliances, gas, electric, water, food prices etc. increase every year.”
“don't fit neatly into a category.”
“The uses made of the PIP payments don't fit neatly into a category. For example, I use mobility aids and other equipment around the house. But these do not remove the affects of the pain and fatigue. Therefore I spend more money on things like prepared foods, laundry services, cleaning etc...”
“how will I pay these ?”
“I am Agoraphobic, unable to leave house for the past 13yrs,my health has declined drastically because I can't face Doctors/Hospitals ,I have no carers ,so I rely on my neighbour, a gardener ,a cleaner and someone who comes in to batch cook for me ,how will I pay these ?”
“This makes sense that the money awarded is used to make a level playing field”
“This makes sense that the money awarded is used to make a level playing field for people with disabilities although some disabilities incur higher energy bills, toiletries/cleaning products and pre prepared foods. It should take these costs into consideration too. ”
“The key word is INDEPENDENCE.”
“The key word is INDEPENDENCE. We use PIP for everyday living, bills, eating, clothing. We have much higher costs and what about the economy, we pay into that too! Without us spending our PIP to live, the economy will crash. ”
“There would have to be a more inclusive definition of equipment.”
“This would not be fair on people like myself who don't need a great deal of "equipment" but spend a lot of money on supplements, extra visits to the dentist, huge need of constant heating all winter, access to alternative treatments as the NHS has little or nothing to offer for many autoimmune diseases, taxis, etc, etc. If our costs are measured only by how much equipment we need in a daily basis it would appear like not a lot. There would have to be a more inclusive definition of equipment. Most of the equipment I use are one off expenses.”
“disabled people’s need’s aren’t easily wrapped up in tidy categories.”
“That is such a blinkered view of what disabled people need. What about the extra costs of those who need to keep their homes warmer or what about those who need to help with cleaning or may they can only stomach foods that are more expensive or access to a swimming pool to exercise with less pain. The fact is disabled people’s need’s aren’t easily wrapped up in tidy categories. Each person is an individual with different needs and wants to help them live the best life they can with dignity.”
“So my vote leave it alone”
“To make this a fair and honest system would require either a fixed monthly payment based on the expenditure of most expensive month or constant request for proof of expenditure and seperate payments each month. Foe example I have COPD, Sleep Apnea, PTSD which means I use a mobility scooter (self purchased) nebuliser machine, oxygen concentrator, cpap machine. I also require taxis to and from hospital at £100 per round trip. Some months I don't visit the hospital other months I've had 5 or 6 visits. And anyone who says travel costs are refunded by nhs, hasn't tried to justify use of a taxi instead of bus travel. So my vote leave it alone”
“I am happy for added financial support to be considered”
“I am happy for added financial support to be considered in addition to what the PIP award currently provides as some individuals probably have higher needs and costs not covered by the current capped PIP amounts. Am interested to see what would be considered within the realm of PIP vs adult social care responsibilities re: equipment, aids etc.”
“there no definition of "fair" in this instance.”
“Don't know because there no definition of "fair" in this instance. Does this mean a little, a lot, everything?
Also the balance is tipped heavily in favour of physical disability leaving little room for non visible disability and conditions. It should also include items such as support to access private therapy, support to access leisure and educational facilities, support for a personal assistant (if needed and if not covered elsewhere), practical support at home with certain activities of daily life such as cooking etc. and managing financial affairs.”
“I use my PIP to pay for things I cannot do.”
“Because I use my PIP to pay for things I cannot do. For example a cleaner ready, made meals the ability to go on a short weekend break but having to pay extra to stay in a disabled friendly accommodation. A also have to pay for a gardener and a handyman.”
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“The benefits system must and should be liberating and enabling, and not limiting.”
“Mobility aids are trivial costs in comparison to other costs disabled people (and their carers, whose awards often depend on PIP awards of the people they care for) face. These include travel and transport, energy and water usage, or medication (not all of which is paid is free, even for those who can access free prescription). Free aids etc. could be provided on the top of PIP and not instead of it. Disabled people should not have massively diminished spending powers in comparison to other people just because their are disabled. The benefits system must and should be liberating and enabling, and not limiting. ”
“the claimant should be free to spend their benefit on anything that is helpful.”
“I firmly believe that the claimant should be free to spend their benefit on anything that is helpful. For example a Cleaner or something therapeutic like private hydrotherapy sessions.”
“i suffer from severe anxiety and i don’t need aids.”
“i suffer from severe anxiety and i don’t need aids. my needs are someone with me helping me try to navigate my daily nightmare and dealing with bills cooking cleaning etc. i’m sure there are other people in my situation but this is making my anxiety even worse not knowing what is going to happen ”
“What about soaring energy costs”
“What about soaring energy costs - costs for having to employ people to do jobs disabled people cannot do - food costs - care costs etc?”
“I’m not sure what this means for people so it’s hard to answer.”
“I’m not sure what this means for people so it’s hard to answer. If it means that people could submit receipts for bedding, aids etc and get additional help on top of their claim then it seems like a good idea, but if it means that people would be given specific amounts or vouchers that had to be spent on specific products from specific suppliers then I don’t think that is a good idea because it removes a persons ability to choose what is best for them.”
“any reduction in the amount of PIP I receive would have a significant impact on me”
“At present, PIP helps to make my life a little more comfortable. It’s hard living with MS, and I use a proportion of my award to go towards the energy costs of my home. I find the cold makes my symptoms worse, and in summer, extreme heat triggers the more unpleasant symptoms of the disease.
As there is nothing towards energy costs at present, any reduction in the amount of PIP I receive would have a significant impact on me and my standard of life.”
“These aren’t the only additional costs.”
“These aren’t the only additional costs. Help with personal care, cleaning, cooking, household bills especially heating and laundry costs are just a few of the additional costs for many disabled people. How are these things going to be recognised? Who will make these decisions for disabled people? On which criteria?”
“it takes away our dignity and autonomy”
“I have several conditions and these categories do not colour my needs. As I have a chronic lung condition that means I need to cover the cost of heating.. I have allergies so those things I cannot eat as I have extra costs in regards to food. Iconic fatigue therefore I have the cost of somebody to support me cook and Clean I have hearing loss so I sometimes need to help with this. The categories that have been suggested as simply not expensive enough to cover the all the things that a disabled person may need and it takes away our dignity and autonomy to control us in such a way”
“this would remove another area of choice”
“Many disabled people have already lost the independence to determine their own lives , this would remove another area of choice to meet our own needs”
“It’s really upsetting and humiliating”
“I already have to justify my disability related expenses to the council for funding towards social care. This means that someone who isn’t a medical professional and knows nothing about my conditions decides whether my costs are reasonable. It’s really upsetting and humiliating. Some of my costs are for treatments that I can’t get on the NHS and it’s hard to get those approved. It’s devastating to have to cut back on treatments that help you because they haven’t been approved. I imagine that this is exactly the system that PIP will use. ”
“one size doesn't fit all”
“As with there being different health conditions of varying and fluctuating conditions of which one size doesn't fit all, this is another ill conceived and thought out idea. ”
“my body can only operate in short bursts”
“My disability precludes me from working full-time, no amount of aids, adaptation or travel costs can change the fact my body can only operate in short bursts unsuitable for employment (Myasthenia) as such my disability benefits are to suppliment my part-time income, so that I can afford to live as anyone else who is able to work full-time.”
“I think it is fair that these costs be identified”
“PIP was introduced to support claimants with the extra cost associated with managing their disabilities. I think it is fair that these costs be identified under suggested categories including those indicated in the question.”
“You cannot quantify most additional costs that make life bearable.”
“Due to lung conditions I have to stay warm...how can they possibly calculate a cost from the general electricity bill. I also have to buy pre prepared vegetables at extra cost as I am.unable to peel or chop. The other essential aides, I have already had to save up for and buy, stairlift, scooter, rollator etc, etc. At last estimate over £6k. Are they planning on re embarking me for these items?
You cannot quantify most additional costs that make life bearable.”
“costs can be difficult to quantify”
“For those with mental health and or neurodivergent conditions, costs can be difficult to quantify. It also limits what the money can be spent on. Things that may improve someone’s life may not be considered an approved cost.”
“the costs vary enormously”
“There is nothing wrong with the way the payments are made now, each individual’s circumstances vary enormously and thus so do the costs vary enormously on a very wide range of items and on services, helpers, carers, cleaners, gardeners, repairs, service of household appliances, boiler etc etc., maintenance of home, decorating costs, special furnishings, the list is endless and not just the few examples stated by Timms.”
“What about the regular costs that aren’t purchases?”
“What about the regular costs that aren’t purchases? It’s not access to work where you buy approved items are reimbursed this is a disability lifeline: cleaners, taxis, transportation to specialist hospitals, gardeners, online shopping and deliveries, physiotherapist fees etc etc.
Not a one off purchase of a walking stick ”
“A lot more detail is required.”
“I don’t understand what a fair contribution means or how this would be calculated. A lot more detail is required. ”
“what we really need is flexibility”
“I always thought that the name was the give away with pip, independence bit being the crucial bit. I think a huge amount of people will lose or struggle to keep their independence with these changes. Life for someone who is disabled can be extremely frustrating, unpredictable and expensive and what we really need is flexibility. How, when and where we spend our money should be down to us and not dictated by someone who has no idea of the daily trials we have to face. Freedom to make our own choices would help us cope but their plans could well hinder us in a world that's already difficult enough, please don't do that! ”
“I need cash to cover unpredictable costs and expenses”
“It's my daily living costs that make my disability expensive. I need cash to cover unpredictable costs and expenses as well as capital costs.”
“But need support.”
“Suffer from schizophrenia so I think mental health will loose as don't need aids and equipment. But need support.”
“almost impossible to quantify reliably”
“Costs vary enormously and are almost impossible to quantify reliably. This is especially the case for people with mental health problems and autistic people. I think this would place people in destitution.”
“I do support this in principle”
“I do support this in principle but also given that PIP is awarded on how your disability affects you, the higher costs incurred from other services such as delivery services, food deliveries, laundry etc should also be taken into consideration and not just purchasing items that aid mobility. Disabled people need assistance with several other aspects of daily life to be able to remain independent, which isn't always solved by just purchasing a few mobility aids and splints and expecting everything to then be manageable”
“Our lives are not so easy to compartmentalise in this way.”
“These three categories alone do not adequately capture the ways in which impairments can impact every aspect of a person’s life. Our lives are not so easy to compartmentalise in this way.”
“provide receipts or "prove" their spending”
“It could force claimants to provide receipts or "prove" their spending, which disadvantages people with fluctuating conditions, invisible illnesses, or those who simply cannot afford to buy the equipment they need upfront. I see it as a way to restrict eligibility. ”
“Needs are personal and private”
“Needs fluctuate. Needs are individual and won't always fall into these categories. Needs are personal and private and we shouldn't have to discuss our difficulties with strangers any more than we already have to. We already have to justify our existence.
Recipients of UC don't have to justify their spending requirements. Why should we?”
“It would remove what little agency the DWP grants us”
“It would remove what little agency the DWP grants us in making decisions about how we live our lives. So much for wanting us to live independently.”
“My concern is centred around the cost of individualising support”
“In principle the idea of support targeted towards individual needs is reasonable. My concern is centred around the cost of individualising support, and the cost/staffing of systems to implement/review & monitor these policies. ”
“People's individual dignity should be respected”
“People's individual dignity should be respected, they should not be evaluated in terms of their costs. Illnesses take a toll on the individual that cannot be monetised. PIP should have an equal base rate, costs of equipment etc should be evaluated and claimed separately. ”
“The vast majority of items needed by disabled people are unique to them.”
“I've always needed to choose my own equipment/aids, mobility/transport etc as anything that has been chosen for me by an OT hasn't ever suited my needs. The vast majority of items needed by disabled people are unique to them. I've worked in health/social care & seen v.large amounts of equipment 'chosen for' disabled people on the scrapheap! Choice by people with Direct experience saves money!”
“There are hidden costs”
“There are hidden costs such as greater energy use from home working and the likelihood of having to work fewer hours due to physical limitations leading to lower income overall. ”
“There's no way I can predict what costs might arise due to my disabilities”
“There's no way I can predict what costs might arise due to my disabilities, so if something unexpected comes up I'm stuck, whereas the consistency of current PIP awards allows me to budget and prepare for unpredicted (but inevitable) costs.”
“you can’t always put a price tag on the support needed”
“Because you can’t always put a price tag on the support needed - particularly if it’s unpaid carers support.
Some items will be seen as one offs but you might need several to be effective and things wear out. Needs change but the time it takes to process any changes can’t keep up with demand.
Costs rise, the allowances won’t. ”
“I think this is a fair and reasonable argument.”
“I think this is a fair and reasonable argument. The overall cost of the benefits system is rising significantly, and it is therefore understandable that the government may need to review and reform the system. Continuing on the current path may not be financially sustainable in the long term. PIP is designed to support people with disability-related medical costs, so these costs should be evidenced to justify the benefit. ”
"their inability to hold down a full time job"
"Not every disability is visible. As a parent to 2 adults with Autism their financial situation is relying on benefits due to their inability to hold down a full time job. They both face extra expenses due to their inability and way their autism runs their life. They need help with transport, are limited to certain foods, require extra heating costs due to sensory issues. Therapies etc all come at an extra cost along with having to pay extra for someone to attend anything they attend as they can’t go alone, so extra tickets, subscriptions etc. Vouchers or direct payments would be of no use to someone in their position or disability."
"it will impact disabled people unfairly"
"I do not support this proposal as it will impact disabled people unfairly who rely on pip wholly as a cash benefit, to spend it as they see fit on their own personal survival. To base awards on contribution towards costs, or rather having to justify your existence via costs receipts is humiliating, and a completely out of touch idea that will harm so many people. These are cuts dressed up as reform. Please look at Scopes disability “price tag”, and the additional costs that come with being Ill or disabled. Disability benefits cash should be increased to reflect this, not reduced or taken away."
"disguising massive cuts"
"Basing PIP awards on disability-related costs is a way of disguising massive cuts to PIP payments. Disability affects every aspect of a person's life, and its financial impact cannot be reduced to a limited list of evidenced expenses, such as equipment, transport, clothing or bedding. PIP should provide flexible financial support based on the impact of disability, not be redesigned into a system where people receive less money simply because their additional costs cannot be neatly itemised and proven."
"upsetting and humiliating"
"I already have to justify my disability related expenses to the council for funding towards social care. This means that someone who isn’t a medical professional and knows nothing about my conditions decides whether my costs are reasonable. It’s really upsetting and humiliating. Some of my costs are for treatments that I can’t get on the NHS and it’s hard to get those approved. It’s devastating to have to cut back on treatments that help you because they haven’t been approved. I imagine that this is exactly the system that PIP will use."