Firstly thank you for all your comments and support.
I was the foster mother of a disabled child, and I am now disabled myself, but still have hopes of fostering again.
Sadly I cannot have children of my own.
The changes to DLA are laid out in a government proposal, again the proposal is not being given the 12 weeks lead time it should get and finishes on the 14th of February (which must be someone's idea of a sick joke).
There is something that you can do, if you feel that you wish to, and that is be a surrogate protestor, or accompay a disabled protestor to a protest.
By the very nature of disability we dont anticipate aggression from the protestors, though I cannot speak for the police.
If you wish to do this there are several sites that would help you - The Broken of Britain is one of them, and it links to other sites.
Obviously signing the petition would help too.
I am a bit overwhelmed by your sheer emotion, and grateful. For many years now disabled people have been vilified by the press and government. It is cheering indeed to read that society does not view us as the media would like. Thank you, a thousand times.
Regarding the consultation, it has a forward by Maria Miller.
Below is the forward, with my responses, which may answer some of your queries.
Please excuse me if the formatting goes astray, I haven't posted here before so I dont know what you will get!
Response to;
Disability Living Allowance reform ? Ministerial foreword
The Coalition Government is committed to helping disabled people to exercise choice and control over their lives. Disability Living Allowance (DLA) helps us to deliver on this commitment.
So why change it?
We have been absolutely clear that our welfare reform plans are designed to protect people in the most vulnerable situations, including disabled people. We are committed to a sustainable and fair system that allows people to work when they can and provides unconditional support to those who are unable to work.
^So DLA is an "enabling" benefit. It enables people to pay for the additional costs of disability, whether that is for care or mobility. It "enables" social interaction, and "enables" the opportunity to work. For many it also fills the gap left by inadequate social service provision, and allows for flexible care to be provided for those with fluctuating conditions.
I would be hesitant to describe the support as unconditional. The criteria for DLA are the conditions, and when someone receives an award it does not define explicitly what criteria are being applied, which is confusing if you have multiple conditions.^
As we move towards legislating for and implementing major reform through Universal Credit and our flagship Work Programme, I believe it is also time to bring disability benefits into the 21st Century.
Universal Credit is a tapered benefit. It is quite clear how the tappering effect will work.
DLA needs a similar tapering effect, by giving more levels of care and mobility it will better represent not only the level of disability, its costs and its implications, but also allowing for people to declare much more easily any improvement or degeneration in their condition.
We are steadfast in our support for the principles of DLA, as a non-means-tested cash benefit contributing to the extra costs incurred by disabled people. However, we need to ensure that the benefit reflects the needs of disabled people today, rather than in the 1990s.
^I am unsure how the world has changed significantly in the last 15 years. There has been very little legislation to effect change, and societal attitudes to disability have not improved, or been encouraged to improve.
Disabled people still have to resort to challenging disablist behaviours privately, on their own, with very little legislation to back them up.^
It is time that we had a disability benefit which is easier for individuals to understand and provides clear criteria and consistent awards.
^Increasing the levels of DLA will better describe the affects of disability, and therefore ensure that the awards better reflect the needs and expenses of disability. This will ensure that awards are more consistent.
Clarification of criteria, and making the criteria for an award available to the claiment is a simple clerical exercise.^
This is why I want to replace DLA with a new benefit ? Personal Independence Payment.
What is "why"? There is no evidence that DLA needs replacing. You have given no evidence that DLA is not fit for purpose.
This is our opportunity to improve the support for disabled people and better enable them to lead full, active and independent lives.
^A higher level of differentiation, and more levels of payment will allow for real savings, and better reflect the needs of disabled people.
No two disabled people have the same condition, with the same results, the same needs, the same desires, the same opportunities.
If DLA has a fault it is that it is not structured in a way that reflects enough the differences disabled people experience, and is not flexible enough to cope with these differences.^
Personal Independence Payment will maintain the key principles of DLA, providing cash support to help overcome the barriers which prevent disabled people from participating fully in everyday life, but it will be delivered in a fairer, more consistent and sustainable manner.
^There are three main barriers.
- Society. It will not change unless there is enforced change, brought about by legislation. Not just access, but employment and hate crime. Disabled people are oppressed by society, which increases their disability, i.e. not only may they struggle to do something, but society wont help them and often actively hinders them. This is two struggles, not just one.
- Financial. Many people who are disabled are in the lowest financial bracket. They often have to self fund adaptations, and care, and the provision of aids. Due to the postcode lottery of care many people use almost all their benefits paying for help, leaving them on the same level of income as a person on Job Seekers Allowance. JSA is however meant to be a short term benefit at subsistance level, yet many disabled people are left with this subsistance level of income every week for life. People on JSA have options, people with disabilities may not have these options. Not every disabled person has the type of disability that allows work, many have pain, illness, fatigue that prevent physical and cognitive work. There are very few jobs that dont need movement or thinking.
- Medical. Many people with disabilities do not simply have physical disabilities of deaf, blind, amputee, spinal failure, etc. Many have conditions that are primarily disabling, but also involve pain, fatigue, illness etc. Some people are actually not well enough for work, and it is their illness that disables them the most. These people often do not have an involvement in society, they do not (because they cannot) involve themselves in a social life, a religous life, in education. Their disabling condition prevents them from "participating fully in everyday life".
You are suggesting that ALL disabled people can be enabled to participate "fully in everyday life", this is a total fallacy.
For many people participation may be 'only leaving the house when they actually are well enough' and when they have the correct support structure in place, such as an assistant, a wheelchair, a wheelchair accessible vehicle, the finances to pay for all these things, and the strength and energy to gain some pleasure or benefit from the experience.^
It is only right that support should be targeted at those disabled people who face the greatest challenges to leading independent lives.
^Why is this the only solution? All disabled people require some level of assistance, otherwise they dont fulfill the criteria of being disabled, that is having a significant impact on ordinary day to day activities.
Those who face the greatest challenges already have the greatest support, in the main. It is those who need additional support, care packages, ILF, attendance, supervision, whether that is for the majority of the time down to minimal time, that face the greatest challenges of juggling what is available with what they need.
This is especially pertinent when many disabled people do not actually get any additional help, even though their disability is recognised as needing the highest level of care. Again this is due to a postcode lottery of care, and the inflexibility of social care packages.^
This reform will enable that support, along with a clearer, more straightforward assessment process.
^There is already a considerable amount of assessment for most disabled people already, performed by GP's, specialists, consultants, social workers and charities.
This should be considered an adequate, and professional, assessment.
Further assessment will increase the costs of implementing a new benefit unnecessarily.^
Personal Independence Payment will also be a more dynamic benefit ? it will take account of changes in individual circumstances and the impact of disabilities, as well as wider changes in society, such as social attitudes and equality legislation.
^PIP will not be a more dynamic benefit. It will be an increasingly static benefit as the differences between the levels proposed will be too extreme. People will not wish to declare an improvement in their condition, or their living experiences if it then means a huge leap in finances.
The levels should better reflect the amount of care and mobility a person needs, not attempt to reduce the levels and distort the reality. You cannot need full time care one day, and then feel you are coping better and suddenly find that you can't pay for the level of care that you need because it falls between the levels.^
Just as we are committed to providing unconditional support to those who are unable to work, we know that work is the best form of welfare for those who are able to do so.
^Work is not the best form of welfare for those available to do so. You are refering to one report that states that work is good for certain conditions.
Given the fact that the assessment to judge who is "fit for work" by Atos (the ESA WCA) is described as "fundamentally flawed" and "not fit for purpose", I have grave concerns that people will be assessed by a similar "flawed" scheme.^
That?s why I want as many disabled people as possible to benefit from employment ? it is not acceptable for anyone to be trapped in a cycle of dependency.
^Disabled People are not trapped in a cycle of dependancy.
Disabled people are trapped by the lack of legislation to force employers to accept them as equal in intellect and skills.
Employers are further stymied regarding employing disabled people by the re-aligning of Access to Work.
Disabled people are also trapped by the attitudes of society. This is a society that in 2011 is less welcoming, empathetic, flexible and caring regarding disabilities, in the main due to the media representation that most disabled people are workshy and scroungers and frauds.
Most disabled people are too ill to work, or their condition would deteriorate because of work. This does not make them workshy.
Many disabled people have paid National Insurance, and are not scroungers. They receive benefits to pay for the additional costs of their disability or disabling condition.
Almost all recipients of DLA are genuine, have been assessed as genuine, have produced huge amounts of evidence to indicate that they are genuine. DWP statistics show that less than 0.5% of DLA recipients are fraudulent.
I have yet to see this Government, or yourself, defend disabled people against this propaganda, hence you are complicit in allowing this propoganda to percolate throughout society. Hence society is not empathetic towards disabled people, and therefore unlikely to volunteer to be more accepting of them, employ them, or facilitate disabled people being part of "their" society.^
By giving people the right level of support through Personal Independence Payment, I hope that many more disabled people will be able to work and enjoy the advantages that an active working life can bring.
^I am unsure how you come to the conclusion that reducing the amount and accessiblitity of a benefit will be enabling. It will further disable people, who will have less care, and therefore be less able to compete in the job market.
Reducing the levels of payment will reduce the chances that they are getting the "right level of support".
Disabled people will not be able to work because the name of their benefit has changed. Changing the attitude of society, protecting and promoting disabled people, enabling them with very flexible working, making benefits dynamic, not only in their structure but also in their delivery, and an acceptance that disabled people have additional needs may empower some disabled people to work.
Many however will still be too ill or too disabled by their condition to attempt work.^
This is why I believe the time is right to reform DLA. We need to create a new, more active and enabling benefit of which British people can be proud ? a benefit fit for the 21st Century.
^In my opinion this is totally the wrong time to reform DLA. Society is not accepting of disabled people, in the main due to media propaganda, though unenforced legislation, insufficient legislation, encouragement of hate crime all play their part. Additionally cuts to Access to Work, Independant Living Fund, housing benefit, social care funding will actually decrease opportunities for disabled people to find work.
You cannot reform a benefit by redefining disability. You cannot employ private enterprise to reassess disability and expect that disabled people, in fact all people will be convinced that this type of assessment is anything like "fit for purpose".
We do need to create a new, more active and enabling benefit of which British people can be proud ? a benefit fit for the 21st Century. But I suggest that this new benefit recognises MORE levels of need.
If there were 5 levels of care, based on the actual hours of care needed, then as people gradually improve, or degenerate, the care levels available would better reflect this. People would then be happier and more confident to try to do more, confident in the knowledge that there is a level that is representative of their needs.
Consider the fraud statistic of 0.5%. Many of the people found guilty of fraud actually had, at the time of claiming, the conditions they claimed. Subsequently they have improved in health, developed coping strategies, found more suitable accomodation and purchased aids and adaptations. The DLA has empowered their recovery.
However they did not have available to them a benefit that reflected their recovery. DLA is not dynamic enough to do this. It is very much all or nothing.
And the proposed levels of PIP emphasise this even more.
Consider the mobility component of DLA. There are two levels. The lower level is primarily for those requiring accompanying. The higher level is primarily for those who are virtually unable to walk. Therefore you cannot actually improve without losing all the mobility component, as these two criteria are not connected.
For Mobility there should be three levels, each being available to all disabilities. Hence it would reflect the actual real amount of assistance that is required, not be targetted at specific conditions. Many people on the higher rate of mobility would be better served by a lower rate, arbitrarily £20, £35 and £50, which would allow those at the lower end to have attendance for essential mobility, the middle rate allowing for some funding of vehicles or mobility aids, and the highest rate being a considerable contribution to those who need both attendance and mobility aids.
Similarly the Care component could be based on five levels, £20, £35, £50, £65 and £80. Although this would allow for very little bought in care, it would allow for people to have their basic needs met of being able to eat, drink, toilet, wash, and take medication. As you can see, the top level would only allow for a maximum of 10 hours help a week - but this ten hours may be the difference between a person living and dying.
Greater flexibility and more levels that truely represent the many differing levels of need are what is required.
This approach is not more complex - it is far more simplistic, based on how much help and how much assistance is required for ordinary day-to-day living, which can be calculated in hours and converted to an appropriate level.
Ordinary day-to-day living includes eating healthily, taking medication, having social interaction, attending appointments, dressing,bathing, toileting, being safe both in the home and outside it. Very ordinary things to most people, but to many disabled people these simple activities are what their lives are centred around, they are the basic needs of all human beings, and for most that is what their DLA is spent on.
DLA is a flexible way of accesing help to satify these most basic of human needs. Social care is another way. However Social Care varies widely across the UK.
I receive no social care, as my social service adult care department cannot afford it. Others, with similar conditions get 4 hours care. Some get 20 hours care. Some get more, with the addition of ILF.
Some contribute towards this care from their DLA care component. Some give almost all their care component. Some give nothing. Some have domestic duties paid for, some have social activities paid for. Some people have all their DLA, Income support and incapacity benefit intact and get huge amounts of care.
I, and many others like me, live on a subsistance amount because we have to pay for all our care.
This is something I hope you will consider when formulating the reform of DLA. Neither society nor Social Care will be there to fulfill these essential needs, regardless of how much we wish it to.^
Thank you for those who read this far :)
And a bigger thank you for making this particular disabled person feel a little less alone.