1. What are the problems or barriers that prevent disabled people participating in society and leading independent, full and active lives?
Affordability is the simple answer to this question. Many disabled people are not working because their conditions militate against them; others because they are discriminated against by employers and thus are unable to break into employment.
Some disabled people are excluded from work due to the complexity of their conditions. For others a full-time job would be out of the question. However, they can’t afford to take on part-time jobs, for the same reasons the majority of non-disabled people have to work full-time, because they have rents, mortgages, bills etc to pay; and, a part-time wage will no more satisfy a disabled persons outgoings than a non-disabled persons.
If the government was serious about getting disabled into sustainable employment why don’t they ensure we don’t suffer financially; that we can earn enough to live decently whether we’re only able to 10 hours a week or 40 hours a week.
It isn’t our fault that our bodies and minds won’t allow us to work full-time; therefore, why can’t we work, contribute to the best of our capabilities and be paid a wage on which we can live. Very very few of us are able to live on the proceeds that 12 or 20-hours per week would bring in.
What I’m calling for is a radical rethink in how we look to utilising all our resources; and, unemployed disabled people willing to work are a valuable resource.
For example, if I’m a qualified person and my line of work commands, say, a £27,000 per annum salary, but I can only work, say, 16 hours of a 37 hour week, then I’d still be paid the full salary and the government would make up the shortfall – naturally, there could be a minimum number of hours expected to work.
While this sounds left field there would be many advantages. The disabled person would be gainfully employed; thus paying taxes and National Insurance; they’d also become more economically active, thus paying more VAT while at the same time boosting the economy; and, the government would pay out less in benefits.
Being disabled does attract greater expenses than is the norm, which is recognised, to some degree, by DLA. But, DLA does not in any way cover the extra costs met by a lot of disabled people. It, for instance, doesn’t cover heating; nor does it cover the cost of car fuel if your entire mobility element is being spent on a Motability car.
So, the main problems and barriers that prevent disabled people participating in society and leading independent, full and active lives are:
1. That many of us are forced to live at poverty levels, especially those of us who cannot work or are those debarred from work due to discriminatory practices of employers.
2. That when we can work, often part-time, we are expected to live on and at a poverty existence.
3. Those of us unable to work are punished for being disabled. It isn’t enough that we can’t access the places and venues open to everyone else; no, even where physical barriers are taken down we’re faced with economic and societal barriers.
4. DLA rates are not high enough to meet the needs of many disabled people. Great, Motability will furnish us with vehicles; but, we have then to find the money to run the things.
Unless a person qualifies for Local Authority care the Care Component of DLA (£71.40 per week) will not cover an hour’s care per day. If people cannot get out of bed, toilet themselves, get washed and bathed, dress themselves, if they can’t cook, or shop, or do their laundry – well, I’d say they’re excluded from pretty much everything!
2. Is there anything else about Disability Living Allowance (DLA) that should stay the same?
DLA serves a purpose in that it affords disabled people who fulfil certain criteria extra monies to cover the greater costs of disability. The present structure of DLA, a care and a mobility component, is perfectly fine. There is no need to complicate the benefit by adding or taking away components or putting conditionality to payment of the benefit – beyond the fact a person has to be disabled in order to qualify.
The benefit should remain universal, that is non means-tested and untaxed; and, be available to all who qualify whether in or out of work.
3. What are the main extra costs that disabled people face?
The extra costs disabled people face would remain the same whatever the name or application of the benefit in place to meet such costs. Whether it’s DLA or PIP many of us still have to meet the extra costs in areas such as:
• Heating our homes
• Running cars
• Adaptations to vehicles
• Greater use of taxis and other door-to-door transport
• Purchasing, running and the upkeep of wheelchairs
• Wheelchair clothing
• Repairs to shoes
• Wearing out shoes quicker
• Walking aids
• The upkeep and maintenance of walking aids
• Adaptations to homes
• Medications
• Alternative therapeutic treatments
• Dietary needs
• Personal care
• Domiciliary care
• All disability appliances cost more
• Holidays cost more
• Getting to and from work costs more
• Going shopping costs more
• Going to the cinema costs more
• Going out generally costs more
• Employment – disabled people are, on average, in low paid jobs.
• Many of us are in unsustainable employment; we experience ‘revolving door’ employment where we’re in work for short periods, then out of work. Thus, it’s difficult for us to save money and our private pension provision is badly hit.
• Those of us with chronic and variable conditions who still manage to work often do so on a part-time basis. If ours is the only wage coming into the household; then we are consigned to poverty, because it is almost impossible to live properly on a part-time low wage.
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?
There is nothing wrong, apart that is from the rates being too low, with the current system. Dropping down to two rates for the Care component, will I suspect, exclude scores of thousands of disabled people from the benefit. It will only make it easier to administrate and understand from the point of view of the authorities.
As I’ve stated, by reducing the Care component to two rates will only serve to exclude those currently served by the three-tier benefit. The changes would make it harder for those with less ‘critical’ care needs to qualify, thus taking away vital monies they need to meet the additional costs that their disabilities still throw up.
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?
Some conditions and impairments are so manifestly self-evident to warrant automatic entitlement. Quadriplegia, blind deaf, some forms of bi-polar disorder, conditions such as chronic pain disorder where all avenues for a ‘cure’ have failed; these kinds of conditions and impairments don’t tend to get ‘better’.
Disabled people should not be made to jump through hoops in order to receive the help they need. Where a GP or consultant supports a person’s claim for a disability benefit there should be no need for a state employed medic to then carry out other, all too often subjective, examinations on the applicant.
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?
Disabled people are entitled to participate fully in everyday life to the fullest, but due to societal and economic barriers they are not. Priorities are free medical care at the point of need; personal care at the point of need; domiciliary needs met; laundry, shopping and cooking taken catered for. People should also be able to get to work and to socialise.
The activities essential for everyday life (this is not an exhaustive list) are:
• Safety in the home
• Help with personal care i.e. washing, bathing, toileting, dressing, etc.
• Assistance to and from, and where and when necessary at, work.
• Assistance when going out – possibly a driver; someone to help with shopping.
• A PA to assist in recreational health activities such as swimming.
• A PA to accompany one to the cinema, theatre, art gallery, etc.
• Generally socialising.
7. How can we best ensure that the new assessment appropriately takes account of variable and fluctuating conditions?
You need, in the first instance, to recognise that many conditions and impairments involve periods of variability and fluctuation. Because someone is able to react more favourably to their living environment today doesn’t mean they’ll do so tomorrow.
Short of asking people to pay back benefits on those days their conditions vary or fluctuate in a positive way; we must accept that conditions do change from time to time; and that even if someone may have a few good days a month, the majority of bad days more than makes up for the fleeting respite enjoyed.
GPs, consultants, as well as a host of other medical professionals, and disabled people are aware of the variable and fluctuating nature of many conditions and impairments. Add to this other descriptors such as ‘chronic’ and the DWP assessors are armed with quite a bit of information even before they meet the clients.
The best way for the DWP to ensure their medical professionals appropriately consider variation and fluctuation is for them to have proper grounding in disability conditions and impairment issues; for them to understand that disability, while having a medical dimension also has other dimensions such as societal and economic barriers. These dimensions cannot be measured with the standard tools of medicine.
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?
Aids and adaptations may for benefit some disabled people. For instance someone may use a walking aid, such as a stick or crutch, in order to improve mobility. However, many despite the use of the aid will still not be able to walk as fast or far as a non-disabled person.
Indeed, using a walking aid may make the person more mobile, but at the cost of causing great pain and even exacerbating the condition.
Similarly, using a manual wheelchair may help to alleviate the pain caused by trying to walk; however, a hemi-plegic could well find that they cannot self-propel due to the weakness down one side and the unevenness of the ground.
Therefore, such an aid, while allowing the person to mobilise with less pain still needs some form of propulsion.
Aids and adaptations can only be used as a measure of ability where and when they can be proved to be as effective as their equivalent in normal day-to-day activities. For instance, if using a walking stick allows the user to get about as fast as an ‘ordinary’ person, and without pain, then it can be said to be an equivalent.
An amputee may to all the world appear to have no mobility issues, other than a barely perceptible limp. Should this disqualify s/he from a disability benefit. What about the associated with, especially leg, amputations such as stump edema syndrome, contact dermatitis, epidermoid cysts, tumors, ulcers, etc; all of which can be debilitating even disabling.
Assessment should not take into account any aids or adaptations for to do so would cause false assumptions to be made. A person may be able to cope with their impairment better with the benefit of an aid or adaptation; but, who is to say the person has the aid or adaptation; can afford the aid or adaptation; or, is actually willing to accept the difficulties sometimes inherent in adapting to new equipment and aids.
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?
The forms would be easier to access and negotiate if they were worded and couched in honesty; rather than the dishonest way they’re currently laid out in such a way as to ‘catch’ claimants out.
The forms should be presented in such a way that the applicant can put across the evidence of how their conditions impact on their lives on a daily, or weekly, or monthly basis (or a combination of all three). GPs, consultants, nurses, physio’s, carers, etc could also supply supporting evidence.
Advertising the benefit more openly and clearly would be a refreshing departure from the past practices of jealously concealing the fact that such benefits exist. GP’s surgeries, hospital waiting rooms, dentists, community centres, etc could hold explanatory leaflets on the benefit.
The literature could carry a few examples of the kind of conditions or impairments that might qualify someone for the benefit. Of course, any such materials could only act as an indicator.
10. What supporting evidence will help provide a clear assessment of ability and who is best placed to provide this?
Where and when it will only cause unnecessary distress to the disabled person, especially if the condition or impairment in itself, with a doctor’s verification, is evidence enough; then, this should suffice. Sometimes some basic humanity is called for.
In the first instance the assessor should consider evidence from the applicant. Where the applicant has provided a full account of her or his condition/impairment and its affect on their day-to-day (week by week or month by month) living, then a simple supporting letter from a GP, consultant, medical professional etc should be enough.
The people best placed to give supporting evidence are GPs, consultants, district nurses, physios, OTs, etc. Close family members, carers and PAs can also be an invaluable source of support evidence.
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 DWP’s use of ‘production line’ medical examinations, many of which appear designed to fail the disabled person is notorious. Healthcare ‘professionals’ such as ATOS are considered by lots of disabled people as mere agents of the DWP who are rewarded by their paymasters to strike as many people as possible off disability benefits.
Horror stories abound around these ATOS medicos and their uncaring approach to medical assessments. People with the most debilitating of conditions struck off benefits; people with terminal illnesses told they are fit for work; people who can barely move due to chronic pain conditions having DLA removed.
The fact that so many people refused or taken off DLA or ESA then go on to win at appeal is testimony to the failings in the system. The DWP has to put in place processes and procedures fit for purpose. All health professionals must be independent acting at all times objectively; the best interest of the claimant must be paramount.
As mentioned before, it would be inappropriate where someone with a manifestly self-evident impairment or condition to need a face-to-face meeting with a health professional, anywhere! The same applies to those who are terminally ill.
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?
Where there is likelihood that a condition or impairment may improve, for instance a nasty fracture of the calcaneus, which might take anything from 24 to 48 months to fully heal, then frequency of reviews can be set using such parameters.
If a person has a chronic condition that after many years and attempts to improve, say through a pain clinic, still persists, is there any point in penalising the person further by making them undergo regular pointless reviews. It’s as though they’re being punished because their body ‘refuses’ to obey the rules modern medicine.
Where and when reviews are carried out they should be done so with sensitivity and objectivity. These reviews are not criminal trials and those under review are not the ‘accused’.
It can be very difficult for an individual to gauge or guess that their condition or impairment has improved to the point that they no longer qualify for the benefit. Improvements don’t arrive suddenly one morning; you don’t go to bed one night doubled unable to walk and awake the next morning fit to run a 100 meters.
Change is often slow and can be imperceptible to the person involved. The fact that some improvement has taken place doesn’t always mean that there is no disability; all it can mean is that the person can do slightly more than they could a year ago.
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?
Changes in conditions can be imperceptible; changes can be so gradual that they’re overlooked in the hurly burly of life. This isn’t to say people are cheating, pulling a fast one. No, it means that our bodies are complicated things that don’t always react in the way we want them to, even where improvements are concerned.
Variable and fluctuating conditions can also be problematic. Who would benefit from someone declaring an improvement in their needs only to discover they’re flat on their backs again a few weeks later – by which time they’ve surrendered the benefit. Could we expect a revolving door of benefits take-up? The situation could arise where someone has multiple claims and change of needs letters being processed at the same time. No sooner are they awarded the benefit than they surrender it, ad infinitum.
When you call for people to report changes in circumstances does this include someone who receives the highest levels of benefit letting the Department know of a worsening in their conditions? This being the case I could keep the DWP busy with reports of my worsening condition.
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?
If the DWP treats PIP like most other benefits, that is designing it like a minefield for the unsuspecting claimant to blow herself up, then why change from DLA? I would like to think the DWP regarded disabled people with at least some degree of integrity. It’s our bodies and minds that are impaired not our moral compasses.
The application forms are written by people with some legal grounding; thus, it’s only fair that applicants should have expert advice and information when applying for PIP.
Therefore, I’d like to see independent benefits’ experts freely available to all claimants of PIP.
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?
No, people should not be compelled to access advice and support when making a claim for PIP. Any compulsion would be inappropriate. Such a stipulation would take away any semblance of independence from any body offering the advice and support to PIP claimants.
Actually, making it a requirement to seek advice and support for the reasons you’ve given could lead to abuse of the system. Bodies and people who give advice and support shouldn’t be used as a weeding-out process. Once this happens they lose impartiality and become part of the assessment process.
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?
Disabled people currently fund their aids and adaptations in a number of ways:
• Local authority Occupational Therapists assess people for A&As. Vouchers are provided for small items; larger adaptations such as wet rooms or stair lifts would be provided through LAs – government cuts will probably hit such services.
• NHS wheelchair services provide wheelchairs; again, sometimes they’ll provide a person with a voucher which the individual can ‘top-up’ – government cuts will probably hit such services.
• People can apply to individual and impairment-specific charities to fund aids or adaptations – government cuts will probably hit such services.
• DLA can also be used for aids and adaptations. Indeed, Motability is a perfect example of how aids are funded.
• Finally, those people who can afford to, or have generous family or friends, fund aids and adaptations personally.
Would PIP, for instance, meet the one-off cost of stair lift, a wet room, or an electric wheelchair? If PIP funded a one-off cost could one still apply for the benefit to meet other needs? For example, I may need a stairlift, which is great for the purpose it serves, conveying me up and down stairs. However, I may still have personal care needs to meet.
One-off payments would be an excellent idea as a bolt-on extra to the benefit.
17. What are the key differences that we should take into account when assessing children?
None, really, lots of children are able to articulate how different things affect them. Where the children are too young or unable to speak for themselves, then a parent or responsible adult who knows the child should be the first point of reference; and, supporting evidence can be obtained in the same way it is for an adult.
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?
DLA has quite useful as a passporting benefit in the following areas:
• Disabled person’s railcard
• Warm Front scheme
• Disability Premium
• Freedom Pass
• Blue badge
• Taxicard
• Dial-a-Ride
• Refund on road vehicle tax
• Motability scheme
• National bus pass
• Local Authority care packages
• Independent Living Fund
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?
Such an eventuality would give disabled people a lot more work to do in order to passport the other benefits and services. It would be a duplication of work for the benefits’ providers while making services that more difficult to access.
I’m sure it would also create a new layer of unnecessary bureaucracy. More importantly it would exclude lots of disabled people from benefits to which they are entitled. When barriers are put in our way, all too often the weaker and more vulnerable amongst us are unable to climb over; and so, they find themselves deprived of what are often life enhancing 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?
This entire consultation has caused me to act with great caution. Some of the questions are couched as though to trip up the unsuspecting respondent; which is, alas, standard practice when dealing with benefits issues in this country. While desirous of participating in the project, one has, at the same time, to continuously re-read the questions, to seek out ambiguity and hidden agenda.
Therefore, I answer this question with a great degree of guardedness.
Ideally, benefits and services should respond to some kind of universality. There should be a code of practice which informs all parties involved in disabled benefits and services provision.
Preferably, one benefit could act as the key to open the door to a range of disability benefits and services. Once the gateway benefit is secured applicants would no longer have to trawl through interminable pages and pages of forms in order to get, say, a Blue Badge, or a Freedom Pass.
Available benefits and services could be packaged ready for the client to access.
Of course, such a process would need compliance from a range of agencies; and, clients would have to agree to a certain amount of trust between these agencies and themselves. The NHS, social services, DWP to name the obvious would be part of that process. Hopefully, this would lead to greater interdepartmental cooperation, something which doesn’t always seem to work at present.
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?
Because of the secrecy bound up with all benefits in the UK it is always more difficult for people of ‘other’ ethnicity to access their full benefits rights. Indeed, the DWP admits that “...people from ethnic minorities are less likely to receive DLA than white people.”
People must be made aware that this is not a benefit solely for those disabled people unable to work. More emphasis should be placed on the fact that getting a job should not be a bar to applying for or receiving the benefit.
There are, undoubtedly, some disabled recipients of DLA who would like to work yet are disinclined to attempt to find employment lest they lose the benefit. Sadly, a culture of suspicion of the DWP’s motives and actions around this issue prevails; and, these fears are not without substance. All too often people migrated from Incapacity Benefit are assessed as ‘fit’ for work; and, following this decision find that their eligibility to DLA is in question.
Being found able to work should not necessarily then bring one’s eligibility to DLA into question. It is because of actions such as these that lots of disabled people are frightened to put their heads above the parapet and seek work – that and the fact there are so few jobs out there; and, we’re discriminated against by a great many employers.
Once we’ve eradicated disability discrimination in the workplace and during the job application process, I’d go further and promote the benefit to employers; thus, progressive employers, through HR departments, could encourage disabled employees not in receipt of DLA to consider making a claim.
22. Is there anything else you would like to tell us about the proposals in this public consultation?
Any benefit in place to assist people with the extra costs brought about by disability must be fit for purpose. The benefit should be easily accessible to all who qualify; and, the assessment process as clear-cut as is possible given the, sometimes, very complex conditions and impairments involved.
The DWP must freely advertise the existence of the benefit; possibly giving some rough guidelines as to qualifying criteria. Of course, there is a fine line between offering this kind of information and prejudging people’s entitlement to the benefit. However, I do believe that a set of guidelines could be drawn up looking at various conditions and impairments and how they might affect peoples’ day-to-day lives.
The guidelines could contain information relating to the additional costs disabled people encounter – obviously, it would be explained that the list was not exhaustive and give signposts to further information. There are, doubtlessly, many disabled people not claiming DLA for a number of reasons:
• They aren’t aware of its existence;
• They don’t feel ‘disabled enough’ to qualify;
• They don’t understand the relationship between the benefit and the additional costs associated with disability;
• They feel intimidated by the dauntingly complicated nature of applying for the benefit.
Contained within the same literature the DWP could point out that the benefits open to all people (giving age ranges) both working and not working. Further, they could also assure people who wish to work that such a desire would not debar them from the benefit. In fact, the authorities could explain how the benefit might assist people in work and those seeking employment.
Finally, plans to deny 80,000 disabled people who live in residential care the Mobility component of DLA on the spurious grounds that they are an ‘...overlap of public funds’, is just plain wrong!
The government is misinformed in assuming that local authorities pay for all the transport costs of residential care homes. A survey looking into the cost of personal mobility costs of residents in care homes found that not a single home received funding from local authorities.
Transport costs for residential care homes are met in a variety of ways. 50% of people living in residential care hand over between half and all their DLA Mobility component to the care home; and, 40% of these state it pays for a Motability car, while another 21% claim the money is spent on petrol for excursions.
Whilst care homes provide as safe living environment for these disabled people, the homes are not, nor should they be, the totality of their living experiences. Disabled people living in residential care homes have the same desires and expectations as people in wider society. They too have social lives and networks; they also have families they wish to visit; some will even hold down jobs; most will wish to visit shops; others will need to carry out a various kinds of exercise.
The Mobility component allows disabled the freedom to get out into wider society and to enjoy what the majority of the population take for granted. Withdrawal of the benefit to disabled people in residential care homes would consign scores of thousands of people to social exclusion; it would in effect act as an imprisoning measure, enforcing loneliness on an already marginalised group.
Seán
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