Dear Maria Miller,
I’m coming to the All Party Parliamentary Group on Eye Health and Visual Impairment meeting tomorrow (21 May 2012) to help explain the importance of Disability Living Allowance.
I understand you will be at this meeting, but I am not sure that i will get the chance to tell you what I want to say, or if I do get that chance, I’m not sure you actually hear me, so I thought I would write you this open letter on my blog.
I am visually impaired, so is my partner. We are both registered blind. We both work, although that shouldn’t be relevant, because DLA (and pip) are NOT ‘out of work’ benefits. It is designed to cover the extra costs of living with an impairment or long-term health condition.
We have many concerns about the change from DLA to Personal Independence Payment (PIP) and we fear the draft assessment criteria will not cover many of issues which incur extra costs for us. So, under the new criteria we fear we may lose benefits. If we lose these payments and are not able to purchase equipment and services it will have an impact on our ability to work, on our ability to support our children and on our ability to purchase goods and services which contribute to our local economy.
I would like to tell you about some of the things we use our DLA for and the impact it may have on our independence if we lose this money. The things I will particularly tell you about are those needs that are unlikely to be covered by the proposed assessment criteria for a PIP.
1. The extra costs of accessible clocks and watches. We can not see ordinary watches and clocks. We need to purchase large print, braille and speaking clocks. These all cost much more money than ordinary watches / clocks. We can not rely on ordinary household appliances and televisions etc. to use their time functions as these are not accessible. In our modern age It is impossible to function, work, shop, communicate with others, cook, get our children to school or attend medical appointment without access to a clock, yet I cannot see any aspect of the proposed assessment criteria which would cover this need.
2. cleaning. We can not see. Cleaning the house, for us, takes ages and if we do it we are never actually sure if we have got all the mess, dirt and marks off. We use our DLA to pay a cleaner. I wish I didn’t have to, but I feel I need to spell it out. We want our house to be a clean, healthy environment for us and our children. We want our house to be clean so that we can invite other people to visit us and so that our children can have friends round without people thinking that we are either lazy slobs or that we need to be pitied because we clearly can’t do it for ourselves. If we didn’t have DLA we would try to do it ourselves, but it takes ages and may still not be done properly. We both work, so if we had to spend the extra time it takes us to clean as well this may impact on our ability to carry out other tasks such as cook healthy food for our children or support them with their education. If we are unable to do this we would have to turn to other services for help or our children would lose out, at personal expense to them, but also eventually, at the expense of the economy. Furthermore, we would not be paying our cleaner, which would have an impact on her earnings and spending power. The pip criteria, as set out, do not include cleaning as part of the activities for daily living, so this would not be considered.
3. Laundry. I regard laundry and having clean clothes as a basic part of daily living. We use our DLA to help us cover the costs of the more expensive washing machine that we have to buy. We cannot just go out and buy the cheapest models discounted in the sales. We have to look for a washing machine that has a large display screen and / or which has push buttons that can be marked rather than touch screens etc. It is no good to us if we can’t see to use it.
4. Ironing clothes properly is difficult when you have no sight. Again it can be done, but takes a lot more time and can result in regular burns – or scolds to the clothes. We use our DLA to pay for ironing. Without DLA ironing clothes would be much more difficult. Appearance is very important to independence. It is very difficult to get and retain a job if your clothes appear dirty and un-ironed. It is also very difficult to maintain your self-respect and to socialise if you can’t be confident that your clothes are clean and ironed.
Neither laundry or Ironing are covered in the proposed assessment criteria for pip activities of daily living.
5. Extra costs of clothing and linen. Being visually impaired we find that our clothes get stained and dirty more often than many of our peers. Cooking, eating and carrying things when you have no or limited sight often results in things getting spilt. Similarly if drinks or pans are left on surfaces and then knocked off because you can’t see them. This means that our clothes get washed much more often, which means they ware out more quickly and need to be replaced. Often the stains and marks do not wash out and the clothes have to be replaced. It is not unusual for us to have to replace a shirt after it has been worn only three times due to un-removable stains. Undoubtedly this costs us much more money in purchasing clothes. We use our DLA to help cover these costs.
There is no provision within the proposed criteria for a pip to cover the extra costs of clothing and household linen. Without DLA it will be much more difficult to be able to afford to purchase new clothing when things get marked. This is likely to have an impact on our self-respect and on our ability to be seen by others as competent to work and take part in community activities. It does not make a very good impression with employers and customers if you have dirty and stained clothes.
6. The cost of specialist equipment. The proposed assessment criteria and case studies indicate that people will be given fewer points towards their benefit assessment if they can achieve particular tasks such as cooking with the use of specialist equipment. We and other visually impaired people use a range of specialist equipment and / or commercially available gadgets with accessibility features. Examples include talking microwaves, speaking kitchen scales, speaking bathroom scales, carving knives with finger guards, liquid level indicators, talking thermometers etc. All of this equipment costs money. It costs more money than standard or discount items which are readily available to sighted people. Many tasks such as cooking and basic health care can not be achieved without this equipment. Our DLA pays for this, but there is no recognition in the current pip criteria to allow people to indicate their need to purchase such equipment. It merely assumes that if they have it and use it then they have less need for benefit. This is not true. Without the DLA we would not be able to purchase the cooking and other equipment we need, which would make us more dependent on the help of others rather than more independent, which is the stated intention of the pip.
7. shopping. because we can’t see we can’t drive. We can use public transport, but public transport doesn’t go to many of the new ‘out of town’ shopping outlets. They are designed and planned for car drivers. We use our DLA to pay for shopping to be delivered or to pay for taxis to help us carry heavy and bulky items. We use our DLA to pay friends and neighbours who sometimes drive us to shops or pick things up for us. We also use our DLA to cover the extra costs of shopping. Yes, that’s right, – the extra costs of shopping! When you are visually impaired and you go to a shop it is an effort to find what you are looking for. It is really not possible to search out the bargains and special offers, so inevitably we end up paying more for our shopping than sighted friends. Again, there is no provision in the assessment criteria for the pip. I would have thought that the simple act of shopping for one’s daily supplies of food, cleaning and healthcare products would constitute a basic activity of daily living.
Without DLA we will not be able to pay for shopping deliveries. We will not feel so able to ask friends and neighbours for help. This means we will have to rely much more on the small, independent shops, which may be a good thing for them, but will cost us a lot more in financial terms because these shops are more expensive. It will also cost us a lot more in time because we will have to get there and back using public transport. All these issues come with an opportunity cost. If we have to spend this time and extra money on shopping it means less time and money for other things. The things that are likely to lose out are our ability to participate in community activities, leisure activities and to support our children in these pursuits. This is another example of how the loss of DLA and the use of the current pip assessment criteria is likely to limit our independence rather than enhance it.
8. Keeping safe and healthy. This is a fairly basic requirement for daily living, but again, is not adequately covered in the pip assessment criteria to meet the needs of blind and visually impaired people. We use our DLA to pay people to do odd jobs for us. These jobs include things like fixing loose tiles, replacing fuses, mending shelves, cleaning windows, cutting the bushes, fixing screws in broken cupboards, drawers and shelves etc. All these ‘odd jobs’ are things that sighted and many non-disabled people can do for themselves. Yet we have to pay someone else to do these jobs. Without DLA we will not be able to pay for these jobs and therefore will be at much higher levels of risk because we are unable to carry out basic repairs and maintenance.
Visually impaired people, like many other disabled people are more likely to have minor accidents than non-disabled peers. We have an increased need for the use of basic first aid equipment and supplies to treat cuts, grazes and burns etc. We also struggle and require the help of others to administer and use basic over the counter and prescribed medication for minor illnesses. None of the instructions for the use of these are supplied in accessible formats. We either have to pay for magnifying equipment to read these instructions or we have to pay for the instruction leaflets to be enlarged on commercial photocopy machines. There is no criteria in the proposed pip assessment which would cover basic costs of keeping safe and healthy. So these needs would not be recognised under the new benefit. The only reference in the pip assessment implies the management of medication related to condition for which the benefit is being claimed. The majority of visually impaired people would not be taking medication for their visual impairment but have great difficulties in managing general medication.
9. Increased energy and lighting costs to carry out activities of daily living. Being visually impaired we need many more lights in our house than our sighted peers. We use our DLA to cover the costs, both of paying for the extra lights and lamps, some of which are specialist lamps with magnifying lenses and specialist bulbs and tubes, which are far more expensive than standard lighting which can be purchased by most people from local large chain stores. Not only do these lights and their replacement bulbs and tubes cost more money to purchase, we also have to fund the extra energy costs of using this lighting. We often need lights on at times of day when sighted people would not and for tasks that sighted people would not need lights for. There is absolutely no provision within the current assessment criteria for a pip which would recognise this.
10. Communication. One of the government’s reasons for replacing DLA with pip is that they say DLA is very focused on the needs of people with physical impairments and does not adequately reflect broader needs of disabled people such as difficulties with communication. However, the stated assessment criteria for a pip are far less likely to pick up many of the difficulties that disabled people, particularly those with visual impairment, have with communication. Most people now rely on technologies such as mobile phones and computers as basic forms of communication. Indeed many government and public services as well as commercial organisations such as energy suppliers promote the use of on-line services, billing, booking and payment systems etc.
For us, the use of technology is fine, and in many ways opens up all sorts of opportunities for independence. However, the cost of accessible technology is far more than the costs of standard technology. I use a computer with a large screen, which costs twice as much as a standard laptop. My partner uses a speech screen reader, which costs way more than a computer, just for the software. Because we both have different access needs, these two solutions do not work on the same computer, so we have to have an extra computer. You can imagine that this costs us vast amounts of money compared with non-disabled, sighted peers. We rely on this technology to manage our bank accounts, to communicate using email, to pay bills, and to do our shopping. We could not live independently without it and we could not afford to have it without DLA.
Mobile phones are another basic form of modern communication. We cannot use the basic £10 per month type phones and contracts. These do not have the necessary accessibility features. Instead we need to use more expensive technology such as apple products. Most people will tell you that apple is an industry leader in terms of the accessibility function. These products are vastly more expensive to buy and to pay monthly contracts for. Without DLA we would not be able to afford these contracts which would mean we would not have access to mobile phones. It is very difficult to function independently in these current times, to maintain employment, communicate with schools, services providers, medical practitioners etc. without a mobile phone.
The communication part of the pip criteria gives NO indication that it would recognise these types of needs for communication for visually impaired people. Without this recognition and the DLA payments we receive our ability to communicate and hence remain independent within our modern society would be hugely limited.
I could go on and highlight other examples of how we use our DLA and how the proposed pip criteria would not recognise these needs, but I hope I have made my point that we do not squander our DLA, it is not a frivolous payment just to give us a bit of extra money. It is used to cover vital expenses that enable us to live independently. These needs are NOT recognised in the new proposed pip criteria. I have not even covered the issues relating to mobility in this post, but the pip criteria do not cover aspects of mobility appropriately for visually impaired people either.
I have also focused this letter on the needs of visually impaired people because I am visually impaired and because I am coming to the All Party Parliamentary Group on Eye Health and Visual Impairment Group meeting. However, I would like to point out that many of these issues are relevant to many other disabled people and people with long term health conditions.
These criteria have not been thought through properly and if they are not amended many disabled people will be left in a situation where they are far less independent with the introduction of ‘Personal Independence Payments’ than they are with DLA. Not only will people be less independent, but they will be far less able to contribute to society. maintain employment and will be more likely to rely on other, more expensive public services.
I would seriously urge you and your colleagues to THINK AGAIN about the current pip criteria.
I thank you for reading.
PS. I am sharing this and asking people to read it and share it if they support these sentiments.