DWP consultation on Disability Living Allowance reforms
DLA Reform Team
1st floor, Caxton House
London, SW1H 9NA
The Disabled Persons Transport Advisory Committee (DPTAC) is an independent body set up to provide advice to the UK Government on the transport needs of disabled people.
Our aim is that disabled people should have the same transport choices and freedom to travel as non-disabled people. Although there has been significant progress in making this happen, disabled people continue to face daily obstacles when travelling.
I have set out our specific comments on the attached sheets, but I would like to flag up some general issues. Although the aim of the reform seems to be the retention of protection for the most vulnerable claimants, it reflects the possibility that benefit will be withdrawn from a significant number of people with a disability today who still desperately require support. Clearly people's circumstances change and a process of regular reviews, based not just on health but including the need for assistance to enable full contribution to society, will be essential to ensure that those who continue to need support were provided with it.
If you require any further information regarding our comments, please contact Ann Morley in the DPTAC Secretariat at the address above.
Dai Powell, Chair, DPTAC
Question 1: Problems and barriers
There are many different factors that prevent disabled people from participating in society but they can be broadly split into three separate categories - medical, social and economic.
People who suffer from fatigue, pain, anxiety, stress and illness often find it difficult to play as active a role in society as those who do not have any of those medical problems. There is not really anything society can do to address these issues and for many disabled people this is just part of life that has to be "coped" with.
Barriers exist in access to shops, buildings and public transport which stop people from leading the life they would wish too.
People view their disability as preventing them from working (pain and tiredness are often the main issue), so they are forced to rely on benefits. There is also an issue that long term illness in childhood can result in missed schooling that leads people to struggle to get the qualifications leading to employment. Also where a disabled person's partner is the main carer, their household could lack contribution from somebody in full-time employment. A lack of employment and employment opportunities is also a major barrier to a full life.
Additionally disabled people face barriers resulting from: attitudes of other people; lack of clarity over benefits payments and their purpose; and organisational created problems. There is no quick answer to this question but the barriers persist despite disability and equality legislation over some forty years.
Question 2: Anything that should stay the same
The security of knowing the funding is available and can be spent as chosen by the recipient should not change. People will also be concerned to ensure any award does not go down as it already fails to meet some extra costs associated with disability.
There should also be in place a system for fast tracking progressive illnesses such as most cancers and motor neurone diseases. In addition to those listed, PIP should act as a passport to the full range of state benefits and to the Blue Badge. It should also be noted that the 'ability to get around' definition of mobility (rather than 'ability to walk' definition) will need to reflect the additional support and/or equipment and costs incurred to get around by those currently in receipt of the DLA mobility component.
DPTAC would also wish to see government research to identify the true cost of long-term disability so that benefits can better reflect need.
Question 3: Main extra costs faced by disabled people
There can never be a standard cost faced by disabled people as the nature, extent and effect of a disability will vary. In some cases there will be a requirement for extra heating; special diet; practical aids and adaptations; special clothing such as shoes; provision of personal assistance; and the main issue for DPTAC is the extra transport that continues to be faced, including travel time and delays.
There are some specific costs that adversely affect disabled people:
Rises in fuel prices adversely affect disabled people as many are car dependant to get around.
Some conditions are exacerbated by cold weather. Heating bills can be a constant worry.
The cost of specialist rather than standard mobility aids can be high, many having to fund powered wheelchairs themselves.
Some people have special diets and food allergies that mean they have to buy more expensive food.
Incontinence problems and excessive sweating can cause people to do far more clothes washing and use expensive tumble driers.
Clothes and shoes
Fluctuating weight and prosthetics rubbing on clothes means that people have to buy new clothes more regularly.
Assistance dog costs
Although some people are able to claim help with their dog costs from either charity or their local authority, others are not. Dog food and vet bills are very expensive as well as kennel costs for people going into hospital who have an assistance dog.
Adapting the home
Chairlifts, bathing equipment, hoists and kitchen adaptations all cost extra.
Question 4: Two rates proposed
In general having three care component rates does not make the current system difficult to understand, and in many ways having three rates was better than two. That said it is thought that having two rates may be administratively simpler; it will depend on the clarity of supporting guidance notes provided. With specific regard to the personal care component two rates will offer the greatest support to those most in need whilst still allowing those with a less severe disability some resources to overcome the barriers they face.
It seems far from obvious whether or not an individual will qualify for the higher or the lower rate. It will therefore be important to establish clear definitions to ensure clarity and avoid confusion.
Of concern is that people who currently receive middle rate care are able to have a family member claim carer's allowance, but if they drop into a lower band their family member would not be able to claim this, which would mean a large drop in the family income.
Question 5: Automatic entitlement - health
It is considered that there should be certain health conditions (for example, untreatable conditions such as amputation / cancer) which should confer automatic entitlement to benefit. This would reduce administration and avoid the need to carry out additional medical examinations. The benefit payable should be related to the impact of the disability and individual needs rather than a blanket diagnosis. A statement from a specialist consultant should negate the need for expensive repeat tests for eligibility, which are potentially distressing and a waste of money.
Question 6: Prioritise support to those least able
The prioritising of support to those least able to lead full and active lives is welcomed. It is not possible to define the activities most essential for everyday life because what is a normal activity varies so much from one person to another. An individual should not be disqualified from benefit simply because they are able to carry out a relatively simple task (such as making a cup of coffee or planning to undertake a local bus journey). What an individual can and cannot do is a question of fact and should be determined by evidence (including medical evidence) and not by arbitrary rules (which may not work well in particular situations). A wider view of the barriers faced by disabled people and their impact on personal needs should be reflected in assessing and providing a suitable benefit to offset these.
Question 7: Variable and fluctuating conditions
This is very difficult as conditions can vary from day to day (or even hour to hour), but in reality assessment of these conditions is likely to need a fairly detailed medical and social report and should concentrate on what is likely to happen when the condition is at its worst, and the impacts on peoples lives that the 'worse case' could have. Conditions such as MS, even if they were to be having a 'good day' on the day of their assessment, should not be at risk of losing benefit.
Question 8: Aids and adpations
The ability of the disabled person should be assessed without reference to aids and adaptations. This would avoid someone losing benefit just because they had obtained a walking stick. Taking account of the aids and adaptations a person actually uses appears problematical, because the aids and adaptations a person uses will vary over time and circumstance (with an additional cost). What is needed is the assessment of what aids could be accessed and funded, including breakdown and upgrade costs, in order to provide the best quality of life for the individual.
Question 9: Simplify process of application
There is strong evidence (Citizens Advice Bureau [CAB] and others) that people find the existing DLA forms extremely complex and difficult to fill in. The use of plain English and the provision of Easy Read forms are to be strongly encouraged. Providing pre-application information on accessible websites would help claimants, advisers and others understand who is likely to qualify. Permission should also be available for an individual to nominate someone to help - they may also need access to social and health records and there should be a facility for an individual to have a pre-application discussion (online and telephone) with a trained advisor to help avoid confusion and to assist those who have difficulty filling in forms.
GP surgeries are good places to provide information on disability benefits and it could be worthwhile sending information out to GP's to alert them to people who may be eligible. Staff in prosthetic/orthotic departments, wheelchair services, etc., should also have a basic knowledge of the benefits system so they can advise patients to investigate further.
Question 10: Supporting evidence
The best supporting evidence is likely to come from the applicants themselves and from people who know them well, so they should provide the evidence. Information should be supplemented by reports from medical and health professionals (the most appropriate health professionals may be an Occupational Therapist or someone with an understanding of conditions and their impact, who also has access to social and clinical information).
Question 11: Face to face discussion
A face-to-face discussion with a healthcare professional seems an attractive idea, although we have some concerns regarding who would be classified as a healthcare professional. It is essential that any discussion is carried out sympathetically by someone who is a good listener. This should not degenerate into a tick-box exercise, and especially should not be outsourced to private companies where there would be concern that targets for reduction in benefit claims would be set.
Question 12: Reviews
It must be recognised that reviews are likely to be stressful for disabled people and will be an administrative burden. Most people in receipt of PIP will tend to have long term conditions and for this reason it would be preferable to have three or five yearly reviews, if at all in cases where the condition will never improve (e.g. amputation or paralysis). This would not be the case if there was a material change or other relevant information came to light, which would need to be declared.
To reassess for the sake of it is a waste of time and resources. Where conditions are likely to improve or deteriorate, a specialist in that condition should be asked to determine when it would be best to review the situation with an understanding that someone can asked to be reassessed before that date.
As all disabilities / health conditions are different it would be wrong to impose the same review period for everyone.
Question 13: Reporting changes
The question asserts that "The system for PIP will be easier for individuals to understand", but this assumption is not supported by the facts outlined in the consultation paper, which indicate that, on the contrary, PIP is likely to be complicated, confusing, and difficult to understand and bogged down by its own administration. The assumption that changes in need can be easily reported is also doubtful and not supported by evidence.
One reason people may not report changes / deteriorated conditions is because of concerns the reassessment process will result in the benefits being reduced. Where someone achieved qualification for benefit there is likely to be limited occasions where people would improve so much over time that they no longer need the benefit.
To assist reporting changes in need, there must be a telephone line that is well manned in order for calls to be answered promptly, and it must be possible for changes to be reported by e-mail and text message (or via a nominated assistant). An accessible website will be essential in these circumstances. At times people may not recognise their changing needs; good promotion of rules, reviews and benefits will be required to help widen understanding and minimise the potential for under-reporting and fraudulent claims.
Question 14: Information for applicants
Applicants may need help from various people (such as CAB) but there must also be a strong system of guidance and information in plain English, Easy Read and other accessible formats. Access to independent help will be essential. The more information which can be provided the better.
Question 15: Requirement to access advice and support
It is very doubtful that a requirement to access advice and support would be workable, particularly as a lot of the claimants will be seriously unwell and will have difficulty accessing anything. This is especially true of those with mental health issues. Many claimants will require home visits from health professionals, advice workers and others. Professional bodies (e.g. doctors) should be required to promote PIP and facilitate engagement.
Question 16: Funding aids and adaptions
There is no simple answer to this question because the individual circumstances of disabled people and the cost of aids and adaptations will vary enormously. Our evidence suggests that most local authorities and the NHS do not fund aids and adaptations. Although people can get a wheelchair through the NHS, they cannot always get what they need and so fund it themselves.
There is also the issue of how skilfully a person can use an aid (many disabled people can barely push their wheelchair at all outside the house). Also if an individual lives in a rural area with no buses and no pavements, their mobility needs will be different from someone in an urban area where low floor buses, accessible taxis, etc., are more the norm.
Evidence shows that disabled people tend to have lower savings than the average population as a whole and this suggests that disabled people are likely to borrow money where necessary to fund aids and adaptations. The provision of aids and adaptations free of charge by the NHS and others should be encouraged. It is difficult to understand what "the option to use PIP to meet a one-off cost" is referring to, as the consultation document suggests that a PIP recipient is free to decide how to spend the benefit. If the intention is for an option for recipients to apply for one-off payments to meet the cost of an aid and adaptation, then such one-off payments would, in principle, be welcome. However the reality is that many people spend all of their benefit on the extra costs of their disability, e.g. extra heating, fuel and clothing. If it was spent on a one-off expense, there would be nothing to pay for anything else. That said we recognise that some cost limit is likely to be needed as it would be unfair to expect individuals to fund expensive one-off costs from PIP. Such costs should be grant funded or provided free depending on need.
Question 17: Assessing children
Again no simple answer is possible. The health conditions and circumstances experienced by disabled children vary greatly and children will be limited in the information they can provide, placing an onus on parents, guardians, carers and others. The medical assessment of conditions experienced by children is likely to prove particularly complex. Additionally the needs of a child can change during their development as can the equipment / aids they need. Therefore more regular reassessments may be needed.
Question 18: Passporting arrangements
The consultation appears to be a little bland in its statements about passporting and should provide clarity on preferred options setting out the outcome that is sought.
Passporting is administratively simple but it can create unforeseen consequences, e.g. the loss of DLA / PIP could have a knock-on effect and lead to the loss of other benefits such as DWP disability related benefits, local authority care services or educational funding. The Motability scheme, Blue Badge, Tax Credits, and hospital travel and parking costs are also affected. Access to Carers' Allowance is especially important. Due to the link to other benefits, when people lose their DLA / PIP the impact on the disabled person is greater than the actual amount of the benefit lost. These unforeseen loses would have severe implications on disabled people.
DLA can be useful in passporting the recipient to a range of help and support including the Blue Badge Scheme and Motability. DWP could improve its processes for passing information to the Blue Badge Scheme and Motability, but the Data Protection Act implications of doing so need to be taken into consideration. If the Data Protection Act implications can be overcome, an electronic link to DWP data regarding PIP awards for the use of local authorities would be very worthwhile.
The document is not clear on whether the lower level of Motability will automatically passport to a Blue Badge, and we consider it should. Where an individual has some mobility difficulties (but not sufficient to attract the mobility component), they may require greater personal assistance when walking and this should be considered within the general amount of PIP awarded.
Question 19: Implications if PIP cannot be used to passport other benefits and services
If PIP could not be used as a passport, more staff would be needed to process the additional paperwork. This would impact on numerous departments within the local authority who would need to perform their own assessment of disability. From the applicant's point of view, having to fill out form after form is stressful and tiring and could lead to some people not bothering to claim what they are entitled too.
There is concern that the implications could include people losing higher rate mobility allowance as a large number of people will lose their automatic entitlement to a Blue Badge, but are likely to still qualify under the discretionary criteria. They will all need individual assessment in the future which will be a cost to the Local Authority. Losing this benefit will also mean that someone will lose their Motability vehicle. There is concern that the scheme will not cope with thousands of customers losing their entitlements. Consequently, our view is that the implications for disabled people are potentially very severe, with a potential loss of benefits and services on which people currently depend, with a resulting struggle to get them reinstated.
Question 20: Combining different assessments for disability benefits
This question depends on the ability of DWP, NHS, Local Authorities and others to exchange information quickly and accurately. In addition to the Data Protection Act issues, there are likely to be complicated problems surrounding the compatibility of the various computer systems involved. There is also the fact that the NHS and Local Authorities do not function in precisely the same way throughout Great Britain. Were it to work, the benefits of joining up assessments would be of benefit to disabled people, as there would be a reduction in form filling, administration and costs. If data can be shared with local authorities, it could also help prevent fraud, e.g. Blue Badge misuse.
Question 21: Equality impact assessments
The assumptions made in the equality impact assessment regarding the impact upon disabled people appear optimistic and do not sufficiently take account of the stress and hassle which will be caused to current DLA recipients by the changeover from DLA to PIP. Given this, it is not possible to comment on the likely impact on other equality groups.
Question 22: Other comments
While having one system for people with a disability to access resources / benefits regardless of age or degree of disability seems a very good idea, the consultation document seriously underestimates the complexity of the proposals, which are presented in an overly- favourable light, accompanied by a lot of spin and overtly favourable assumptions. A great deal of work is needed to facilitate the changeover from DLA to PIP, and the consultation document seems to underestimate the work required to achieve this.