1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives?
There isn’t enough paper in the world to fully answer this question!
From a personal perspective, I have faced physical barriers – poor building design, noisy environments, bad lighting all prevent me doing things on a regular basis. For example I avoid eating in restaurants because often noise levels prevent me from hearing and understanding speech – even sitting across a small table from my partner, whose speech I am very familiar with, I struggle to converse with him in restaurants.
I face attitudinal barriers as someone with hidden impairments. I don’t look like I need a seat on public transport, I don’t look like I need people to consider my communication support needs.
Things from within the body can also act as barriers. It is very hard to engage with society when one lives with chronic pain or fatigue. These things are hard to mitigate for. There is no adjustment that can be made in my workplace for days when my brain simply won’t unfog, and looking at a screen makes me feel dizzy and sick.
I would add that a 9 week consultation period, that occurred with Christmas and New Year in the middle of it is particularly unfair, particularly given the people that most need to engage with the consultation are those that may need extra time and support to analyse and respond to such an important and complex matter.
2. Is there anything else about Disability Living Allowance (DLA) that should stay the same?
Three rates of DLA Care component recognises differing degrees of need with more subtlety than two rates would.
3. What are the main extra costs that disabled people face?
I can’t speak for all disabled people. We have massively variant needs, and each of us finds our own ways to work around difficulties, and implement different coping strategies.
I can’t quantify exactly what costs are impairment related, and what costs I would incur if I wasn’t disabled.
I have tried to work out a few costs though, as illustration.
I use crutches to extend the distance I can walk. This is a fantastic tool that enables me to enjoy life outside my home. However, I still have to buy replacement ferrules avery few months (shock absorbing ferrules that stop my wrists and shoulders becoming damaged cost about £25 per pair). I estimate this cost at £50 a year. These are not provided by the NHS, this is paid for out of my DLA.
I wear padded gloves to further protect the nerves and bones in my hands, the padding becomes worn and flattened through use and loses its efficacy. Cost £12 a year.
A small cost that I think is an interesting one is if I decide to get a cup of coffee whilst I'm out, I have to sit down to drink that coffee. I can't walk and carry coffee at the same time as both my hands are using my crutches. I need to sit at a table or it's reasonably likely I'll drop or knock the coffee over. This means I need to drink in, which costs me more than taking away - around 40p extra, which if I'm having coffee out three times a week, every week, equals £62.40 a year.
Stopping off in a café also means I can rest. Sometimes this is a necessity rather than a nicety. Sitting in a calm corner means I can recover If I am in a state of sensory overload.
I wear trousers out very quickly, and a result of my Dyspraxia is that I struggle to repair clothes neatly enough for them still to be presentable. This means I end up buying new trousers a few times a year. I estimate I spend £40 more per year than I would were I not Dyspraxic.
I have bought a good quality can opener I find it easy to use. £12.00
I wear sturdy, supportive, lightweight walking shoes. I get through a pair at least every year. £60 per year.
I use a graphics tablet rather than a mouse. £100
I eat good quality, fresh food to stay healthy. I have limited energy levels, and become extremely tired very easily if I do not eat well.
I can’t work full time. My job pays me enough to live on, however being limited to three days work a week means my impairment is costing me in the region of £6000 a year in lost earnings! DLA means I can afford to work part time, and still have my basic needs met.
4. The new benefit will have two rates for each component:
• Will having two rates per component make the benefit easier to understand and administer, while ensuring appropriate levels of support?
• What, if any, disadvantages or problems could having two rates per component cause?
I do not believe two levels will be nuanced enough to accurately meet different people’s level of need. I am seriously concerned that people that *just* miss the criteria for higher rate support will not be supported adequately through lower rate support. Currently, middle rate care DLA means this is not such a problem.
5. Should some health conditions or impairments mean an automatic entitlement to the benefit, or should all claims be based on the needs and circumstances of the individual applying?
Yes, I believe there are some conditions that without doubt increase people’s cost of living so financial support should be automatically provided to those people.
I would include conditions such as Motor Neurone Disease, Multiple Sclerosis, Muscular Dystrophy in this list.
6. How do we prioritise support to those people least able to live full and active lives? Which activities are most essential for everyday life?
Essential activities are surely those that sustain life – feeding, toileting, sleeping, bathing, exercising. People should have the choice over how those needs are met, and how best they can be supported.
What one person considers a full and active life may be considered idle by another person, and too much to cope with by a third person!
7. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?
Simply accept that many conditions fluctuate. The human body is a wonderful complex thing, it isn’t a machine and doesn’t behave identically constantly. And often, when the appropriate support is put in place, people’s conditions are much improved – which is the point of the support!
The best thing you could do would be to listen to the people that are being assessed.
8. Should the assessment of a disabled person’s ability take into account any aids and adaptations they use?
• What aids and adaptations should be included
• Should the assessment only take into account aids and adaptations where the person already has them or should we consider those that the person might be eligible for and can easily obtain?
No, assessment shouldn’t take aids and adaptations into account because those aids and adaptations aren’t always available.
For example, I know a man who has his flat set up with rails around his toilet, perching stool in his kitchen, front room arranged so everything is in easy reach, cupboards well organised and everything positioned low down, telephone that he can hear well. In his flat, he isn’t disabled by his environment, and he needs no obvious support.
As soon as he goes outdoors he encounters physical barriers, and needs to ask for help, for example, taking things off supermarket shelves, sitting at bus stops to rest. If he goes to his voluntary job he has to ask for help preparing his lunch because he can’t open the microwave door where he works. He can’t lift their kettle safely. He can’t always find a mug somewhere he can reach it.
Also, aids and adaptations continue to need maintenance, and continue to cause additional cost – Wheelchair users will still need to spend extra money on things like gloves, inner tubes, tyres, see my example with crutches given above, people that use assistive technology like speech synthesizers will need batteries, software upgrades.
Systems fail, aids break. They need to be bought again, or repaired. In the interim while the aid or adaptation is unavailable the person may incur much higher costs than expected – to pay for shopping to be delivered, or to buy take-aways, or get taxis where normally someone could get the bus.
9. How could we improve the process of applying for the benefit for individuals and make it a more positive experience? For example:
• How could we make the claim form easier to fill in?
• How can we improve information about the new benefit so that people are clear about what it is for and who is likely to qualify?
10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?
Currently a range of people can be, and are asked to provide information.
Many disabled people that have lived with their conditions for a long time are not “ill” and are not under the care of a consultant or specialist. In this type of situation I would suggest the individual is listened to, and documentary evidence is provided simply to confirm that the individual has the condition / conditions named.
People that live with long term health problems are more likely to have a professional relationship with a GP, and possibly consultants or specialists. In this case, it would be appropriate to ask for information from one of these sources.
11. An important part of the new process is likely to be a face-to-face discussion with a healthcare professional.
• What benefits or difficulties might this bring?
• Are there any circumstances in which it may be inappropriate to require a face-to-face meeting with a healthcare professional – either in an individual’s own home or another location?
- The discussion must take place somewhere where the person being assessed is comfortable, and where their access requirements are absolutely met without question.
- Someone applying for support is not on trial, and they are not guilty of anything.
- People must be free to be accompanied in any meetings.
12. How should the reviews be carried out? For example:
• What evidence and/or criteria should be used to set the frequency of reviews?
• Should there be different types of review depending on the needs of the individual and their impairment/condition?
People with long term conditions shouldn’t be subject to frequent review. Someone with Dyspraxia is never going to stop being Dyspraxic. Someone with Cerebral Palsy is never going to stop having Cerebral Palsy. To repeatedly reassess causes unnecessary stress, and will incur costs that are not necessary.
I could see a five-yearly basic renewal for people with long-term conditions being reasonable.
With short term conditions that may improve, two yearly review may be reasonable. But if it becomes clear after, for example, three reviews that the individual’s needs haven’t changed, they should be considered to have a long-term condition.
13. The system for Personal Independence Payment will be easier for individuals to understand, so we expect people to be able to identify and report changes in their needs. However, we know that some people do not currently keep the Department informed. How can we encourage people to report changes in circumstances?
14. What types of advice and information are people applying for Personal Independence Payment likely to need and would it be helpful to provide this as part of the benefit claiming process?
15. Could some form of requirement to access advice and support, where appropriate, help encourage the minority of claimants who might otherwise not take action? If so, what would be the key features of such a system, and what would need to be avoided?
16. How do disabled people currently fund their aids and adaptations? Should there be an option to use Personal Independence Payment to meet a one-off cost?
17. What are the key differences that we should take into account when assessing children?
18. How important or useful has DLA been at getting disabled people access to other services or entitlements? Are there things we can do to improve these passporting arrangements?
19. What would be the implications for disabled people and service providers if it was not possible for Personal Independence Payment to be used as a passport to other benefits and services?
20. What different assessments for disability benefits or services could be combined and what information about the disabled person could be shared to minimise bureaucracy and duplication?
21. What impact could our proposals have on the different equality groups (our initial assessment of which is on page 28) and what else should be considered in developing the policy?
22. Is there anything else you would like to tell us about the proposals in this public consultation?
My additional comments are below, taken from a letter sent to Ms Miller. Sections in italics are from an earlier response her office sent to me.
"As I have said, we are currently in the process of developing the detail of the new assessment with the help of a group of independant specialists. While I therefore cannot give details at this time of how the assessment will affect Mr Misplaced Marbles, I can assure you that it will not only take into account physical impairments but also mental, intellectual and cognitive ones."
I am glad to hear that mental, intellectual and cognitive impairment will be considered alongside physical impairment. I sincerely hope you also account for the reasonably common situation where someone has multiple relatively minor impairments that collectively work to make an individual moderately (or severely) impaired.
For example, a friend of mine has High Functioning Autism alongside Hypermobility Syndrome. Alone, each condition could be manageable (he is not severely Autistic, and his HMS is bad, but appropriate aids would give him some relief), but combined he suffers extreme fatigue which greatly reduces his cognitive ability meaning he goes into cognitive overload / Autistic meltdown on a regular basis. This further exhausts him, and makes his co-ordination worse meaning he experiences more joint dislocations than he would otherwise. (His wrists dislocate multiple times a day, shoulders daily, knees multiple times a week, hips similarly!).
Because he has to take high doses of anti-inflammatories and opiate-based painkillers to manage the pain from the multiple and frequent dislocations he experiences he is further impaired by the sedating side-effects of the painkillers.
I would be very interested to know who is in your group of independant specialists, and what qualifies them to be called specialists. Are you consulting with disabled people outside of this consultation?
"I was pleased to read that Disability Living Allowance enables Mr Misplaced Marbles to work. Currently the employment rate of Disability Living Allowance recipients is very low, I hope that out reform of Disability Living Allowance, alongside other current benefit reforms such as the Universal Credit and new Work Proramme will enable other disabled people to work and enjoy all the advantages that an active working life can bring."
The employment rate of DLA recipients being low is not the fault of the benefit! Being disabled make finding suitable, regular employment challenging, and instigating punitive measures to "encourage" people into work will only increase stress for those who are least able to deal with the pressure.
The document quoted in the DLA consultation document (Disability Living Allowance and work: Exploratory research and evidence review, 2010, DWP Research Report No. 648” (RR No.648).) later states “the main factor affecting the employment rates of disabled people is their disability or health condition” and “a larger than average proportion of DLA recipients also appears to be affected by the specific types of impairment that carry the greatest employment disadvantage for disabled people”
Surely it isn't a huge leap of logic to surmise that the types of impairment that result in needing the levels of care or mobility assistance are those impairments that make it very difficult to find suitable work?
Many conditions cause fatigue either directly, or as a side-effect of medication. Whilst someone may be capable of coherant thought and carrying out complex tasks when they are not fatigued, this may only account for half the week, and it can be impossible to predict which days are going to be good, and which bad. How is an employer to make reasonable adjustments for people with this kind of issue?
I know that disabled people can work - I work in an office with a higher than usual proportion of disabled people. But I also know that there's a big difference between someone's theoretical ability to work, and they're ability to find a suitable job where all necessary adjustments can be made.
"I appreciate that there are many reasons why the number of people claiming Disability Living Allowance is increasing, but we need to get expenditure on a sustainable footing.
Over the last decade spending on Disability Living Allowance has risen dramatically. In just eight years the numbers claiming DIsability Living Allowance has risen from around 2.5 million to nearly 3.2 million - an increase of 30 per cent."
Sadly, human beings on an individual level don't conform to economic demand. If there are 3.2 million people that need the type of assistance DLA provides, there are 3.2 million people that need support. There won't suddenly be fewer disabled people around just because there are fewer in receipt of a benefit, but there will suddenly be fewer disabled people enabled to live their lives. There will be more disabled people living below the poverty line, suffering poorer health because they're having to choose between paying for decent food or heating, suffering with exacerbated conditions because they can't access the support they need, because they're having to choose between some help around the house or paying for specialist physiotherapy.
"The inherited fiscal legacy has forced the Government to make some tough decisions about how we target resources - the Budget deficit is costing this country £43 billion a year in interest payments alone. The Government has tried to make fair choices and to protect those who are most in need."
I suppose subsidising car drivers by delaying a rise in fuel duty, not closing loopholes in the tax system that allow companies to legally avoid paying billions in tax, continuing giving Winter Fuel Payments to all people over 65 regardless of their income or need were all just too tough compared to making cuts that will seriously affect the lives of disabled people, who are already the most financially and socially disadvantaged group in the country.
I am proud to live in a country where I can (and do) pay taxes to support people that are out of work, sick and disabled, on low incomes, or out of work. I would far rather pay and risk a tiny, tiny proportion of fraudulent DLA claims going unnoticed than see the kind of changes that are being proposed by your government, and will see people that can least afford to lose out living in genuine hardship, and suffer increased ill health and decreased independance as a result.
Sunday, 6 February 2011
After feeling absolutely despondant at the state of the country, yesterday's library activism made me feel far more hopeful. Not particularly hopeful that we're not being royally fucked by the government, but that people do give a fuck, and it might take a while, but the left isn't completely dead.
Five libraries in Lewisham Borough are under threat of closure. It's the smaller libraries, but their size, and tucked-awayness that makes them valuable quiet spaces to go to. As well as providing services to people that for whatever reason possibly can't access the bigger central library.
My partner and I headed down to Catford Library first, which isn't threatened directly, but it is the library nearest to me, so I wanted to get a book out, just because I can. It was lovely and busy - about 10 kids were using it to play Magic: The Gathering, lots of people were studying or reading at the tables, most of the computers were in use, and there were many browsers. Definitely didn't feel like it was suffering lack of use at all.
There are a few stands with books selected to be of particular interest. There's an LGBT interest shelf, but I'd not noticed a table for LGBT stuff before. But it was the euphemism they picked that amused me most:
After Catford, we jumped on the 54 to Blackheath Library (the Lewisham Borough one, not Blackheath Standard which is in Greenwich Borough). We got there when it was closed for lunch... after lunch we popped in and was pounced on by a woman giving "Save Libraries" stickers out. Shortly after we got there, a vicar, complete in jaunty black hat and long frock came in and was also pounced on by the sticker woman!
There were readings by different local people. Blake Morrison read some poetry, and a piece about his dad. Lucy Mangan (from Catford, but no-one held that against her) read a piece about going to a pre-marriage meeting with her partner's vicar, without noticing the vicar sat to the side of her. She pointed out that she's an atheist, but her partner (husband, I guess) is Anglican, hence the meeting. A local historian spoke a bit about the history of education and libraries in the boroigh, and the vicar spoke a bit about printing and told the prodigal son parable. Not entirely sure what the relevance of that parable was, but hey ho!
We rushed back to Scott's to make pudding to take to a Burn's Night supper, and then went to said supper. Which was very nice, though not the focus of this post.
We jumped on the bus home from Victoria at about half one in the morning, stopping off at New Cross, and decided to drop in on the New Cross occupation! This was the bit that really gave me hope. The security guard let us in, on condition therw was no drinking, smoking, or something else you wouldn't dream of doing in a library that I can't remember, Inside was a good solid peaceful occupation, where a good mix of people were reading, talking, and dozing in the library, discussing stuff from the merits of different types of direct action to whether or not police should be let in to use the loo. My partner went out to buy some supplies for the morning (a big bag of cereal bars, lucozade, and orange juice). At about 4 we decided to go home, as we didn't have anything to sleep on and I was too sore to sleep on the bare floor. I'm a little sad that we didn't stay though.