Personal Independence Payments vs.

Disability Living Allowance

Will our clients be better off?

Derbyshire Dales, Amber Valley and Erewash CAB April 2013

PIP vs. DLA: Will Our Clients Be Better Off

Contents

Executive Summary Methodology The Survey In Conclusion Appendix

3 4 6 9 12

PIP vs. DLA: Will Our Clients Be Better Off

Executive Summary
In April 2013 Personal Independence Payments (PIP) will begin to replace Disability Living Allowance (DLA) for claimants aged 16-64. This is one of the key changes of the Welfare Reform Act 2012. Both benefits are designed to provide financial assistance for people with a long term health problem or disability, enabling them to meet costs associated with their care and/or mobility needs. The benefit will be introduced in stages. In Derbyshire clients will be able to make new claims for PIP from 10 June, 2013. In October, existing DLA claimants reporting a change of circumstance, claimants whose DLA claim is due to end in February 2014, and claimants approaching the age of 16 will be invited to apply for PIP. Reassessment of the remaining DLA claimants will begin in October 2015. Although PIP is designed to broadly meet the same needs as DLA, there are differences in both the criteria and in the way the benefit is assessed. This has led to some concern that our clients may be worse off under PIP. With this in mind, Derbyshire Dales, Amber Valley and Erewash Citizens Advice Bureau (DAECAB) undertook a project to assess how claimants would fare under the new system and anticipate the needs of our clients going forward. Our findings revealed that there is some concern amongst our clients over the requirement to attend face-to-face assessments. Partly this is down to mobility problems and also mental health issues such as agoraphobia or schizophrenia. We can also speculate that previous negative experiences of Employment Support Allowance (ESA) assessments contribute to these concerns. Furthermore, the availability of home visits will vary according to location: assessments will be carried out either by Atos or Capita, according to postcode, and it appears that Capita are committed to carrying out more assessments in the clients home. We have also identified that a significant number of claimants may no longer receive the maximum available support for their mobility needs due to changes in the descriptors. As a consequence many will no longer be eligible for the Motability Scheme. The overall picture regarding the care element, known as the Daily Living Component, is less clear. The component has two rates as opposed to DLAs three, and when we anticipated our clients scores under PIP the results were varied, with some clients being better off, some worse.

PIP vs. DLA: Will Our Clients Be Better Off

Methodology
DAECAB provides advice sessions in all GP surgeries across our three districts. Our advice work within these primary health care settings regularly sees us helping clients to apply for Disability Living Allowance. It therefore seemed fitting to work with our client base at surgeries to investigate how applicants for DLA may fare if applying for PIP instead. The focus of this survey was; To investigate how our clients will be affected by the introduction of PIP To find out how our clients feel about attending face-to-face assessments To identify areas for further social policy work going forwards Each time an adviser assisted a client in completing a DLA application form they estimated what level of benefit they believed the client should be entitled to. This was an educated guess based on evidence provided by the client whilst completing the application form. This enabled the bureau to project outcomes and identify clients that may want to consider challenging DLA decisions. We designed a pro-forma1 for the advisers to complete to compare the estimated DLA award to the 2nd draft assessment criteria for Personal Independence Payments2. We were then able to assess whether the client would be better, or worse, off. We also hoped to be able to identify whether specific groups of clients may be affected more than others. Finally our advisers asked the client one question How would you feel about attending a face-to-face assessment? We wanted to gauge how many DLA applicants would find it difficult to attend an assessment outside of the home and what emotional impact this may have. Sample We started to collect evidence in May 2012 and by September we had had a total of 57 responses from across GP surgeries in Derbyshire Dales, Amber Valley and Erewash.

1 2

Appendix 1 Personal Independence Payment: second draft of assessment regulations November 2011.

PIP vs. DLA: Will Our Clients Be Better Off

Restrictions of research method We recognise that evidence generated and collected is not impartial. Advisers are not medically trained nor are they completely objective in their views, since the function of our organisation is to act for the benefit of and in support of clients. Whilst we accept that the evidence may be skewed in clients favour we feel it provides a valuable insight into the possible impact of PIP on our clients, and the anticipated demands on our service.

PIP vs. DLA: Will Our Clients Be Better Off

The Survey

Face-to-face assessments Of our sample just 14 believed that they would not find it difficult to attend a face-toface assessment. Of the remainder, we identified both physical and mental barriers to visiting an assessment centre. Limited mobility was frequently cited as a cause for concern by clients contemplating the need to attend a face-to-face assessment, with many stating that they would need physical support from another person. It is clear that if premises used for faceto-face assessments are easily accessible and have disabled parking nearby then this could alleviate some problems, but not all. Our evidence suggests that there is a significant need for home visits, as many PIP applicants struggle to leave the house and would find it challenging to visit an unfamiliar location. Dev had his left leg amputated above the knee in July 2012. His mobility is severely limited and he can only leave the house in an electric wheelchair or scooter. Without significant support from another person, including transport in an adapted vehicle, he cannot go anywhere beyond his immediate locality. To attend a face-to-face assessment he would have to pay for an adapted taxi and get a friend to take a day off work. He is scared that he would not be able to park close enough and that he may then not be able to manoeuvre his wheelchair within the premises. Dev states that he would really struggle both physically and financially to attend a face-to-face assessment. He feels a home visit would be more appropriate in his case. 17 of the clients we asked would find it difficult to attend due to overwhelming psychological distress or anxiety. This evidence highlights the need for mental health specialists as part of a fair and transparent assessment process. Several clients spoke of previous experiences of face-to-face assessments in relation to their claim for Employment Support Allowance (ESA). Many of these clients mentioned that their ESA assessment with Atos had been a negative experience with reports of inaccurate assessments mentioned a number of times to our advisers. The overwhelming response to this question from clients with previous experience of the ESA work capability assessment strongly indicates that lessons need to be learnt. Jim has paranoid schizophrenia, he constantly hears voices telling him that someone is coming to get him. He lives in constant fear and experiences severe anxiety. Recently Jim was transferred from Incapacity

PIP vs. DLA: Will Our Clients Be Better Off

benefit to ESA. Jim did not have to attend a work capability assessment because of his severe mental health problems. We asked Jim how he would feel if asked to attend a face-to-face assessment to claim PIP. Jim stated that he would be put off from even applying if he knew it was probable that he would be asked to attend an assessment. Jim has read a lot about Atos in the media and he is scared about what they will say about his condition. Many of our advisers involved in this research project questioned why a face-to-face assessment is needed where a clients consultant or GP has provided detailed medical evidence. Several saw face-to-face assessments as a barrier to applying, designed to put applicants off completely. Overwhelmingly our advisers felt that faceto-face assessments should only be used in cases where a clear decision could not be made using other available evidence. It was also commented upon that a GPs or consultants opinion should be valued and considered alongside a face-to-face assessment, with appropriate weighting given to the opinion of the medical professional as they have a more extensive knowledge of the clients medical history.

The mobility component Our research shows that for some clients the change to the way in which the mobility component is assessed may be positive; this is particularly the case for those with mental health problems and learning difficulties, due to those PIPs descriptors which address planning and following journeys. However, for those with physical restrictions on their mobility who do not use a wheelchair, the changes could see them becoming much worse off. The high rate of Disability Living Allowance mobility component does not have the same eligibility criteria as the enhanced rate of the mobility component for Personal Independence Payments. In the majority of cases to qualify for DLA high rate mobility you need to be unable or virtually unable to walk.3 To qualify for the enhanced rate of the PIP mobility component you must be unable to move more than 20 metres, either aided or unaided. Of our sample 12 clients who currently receive DLA at the high rate for mobility would not qualify for the enhanced rate of the PIP mobility component. A further 14 should continue to qualify for the enhanced rate having met criteria for DLA high rate mobility. This means that from our sample of clients a massive 46% are estimated to lose some of their mobility award. There is perhaps an argument to be made here for those who have a physical disability but who continue to try to walk without resorting to the use of a wheelchair.
3

CPAG Welfare benefits & tax credits handbook 2012/13, Chapter 9, pg. 138

PIP vs. DLA: Will Our Clients Be Better Off

Will it become more sensible, financially, to give up trying to walk and use a wheelchair instead?

Motability and PIP On 14 December 2012 Motability announced that Motability will continue to lease cars, powered wheelchairs and scooters to disabled people who receive either the Higher Rate Mobility Component of DLA or the enhanced rate of the mobility component of PIP4. This means that 46% of our client sample who currently meet the criteria for a Motability vehicle may cease to do so once assessed for PIP. We have a number of concerns for our clients. Many have come to rely on their Motability vehicle in order to remain independent and information from Motability indicates that if eligibility for the scheme ceases the vehicle will have to be promptly returned even if the client chooses to appeal the decision5. There is the potential for many severely disabled people to be left without a vehicle, therefore unable to leave the house. This could have a significant negative impact upon health and wellbeing.

The Daily Living Component The Daily Living component of PIP is equivalent with the Care Component of DLA. However, there are only two rates, standard and enhanced, and as a result there are some concerns that clients who had previously qualified for low rate care under DLA may not qualify for an award under PIP. In fact, the picture appears to be more complicated than that. We predicted that 9 of our sample who should be awarded an amount for care under DLA would be worse off under PIP, receiving no award for the Daily Living Component. Interestingly, although we expected most of these to be awarded Low Rate Care two were eligible for the Middle Rate. Equally unexpected was that 8 of our sample who were eligible for Low Rate Care would be better off under PIP, as they would be entitled to the Enhanced Rate.

http://www.motability.co.uk/about-us/news-and-information/personal-independence-paymentmotability 14 December 2012 5 http://www.motability.co.uk/about-us/news-and-information/personal-independence-payment 26 October 2012

PIP vs. DLA: Will Our Clients Be Better Off

In Conclusion

Inevitably many of our clients are facing challenges in respect of the help that they receive with their care and mobility needs, both with regard to PIP and in the context of wider changes to welfare. Agencies need to be aware of what our clients advice needs will be in the new welfare environment, and what options are available to them. Our PIP project has indicated that the following issues will be of significance going forward.

Face-to-face vs Home Visits The application process for PIP is in two parts: an application form to be completed by the client, followed by a face-to-face assessment. The question of which company carries out the assessment will depend on your postcode. For much of the country Atos will carry out the assessments, working in partnership with the NHS, private hospitals and national networks of locally-based health professionals, such as physiotherapists, using their premises and staff to undertake face-to-face consultations. For most of Derbyshire, Capita will be carrying out assessments, and they expect that a large number of consultations will be in claimants own homes. Their approach allows claimants to choose their preferred method of contact and select their appointment time. The upshot is that your likelihood of getting a home visit may depend on where you live. Our survey has indicated that many of our clients would find it difficult to travel to a test centre, and these clients will be seriously disadvantaged in areas where home visits are not easily available. It may be that many clients will choose not to make a claim, rather than endure the distress of attending the assessment. There is a clear role for advice agencies in identifying clients for whom a visit to an assessment centre is not appropriate. Clients need to be aware that they can be assessed at home and help should be available to assist them in requesting a home visit. Moreover, where it is possible for a decision to be reached purely on written evidence, many claimants may need help completing the application and gathering supporting evidence for their claim, such that any further physical assessment will be redundant.

PIP vs. DLA: Will Our Clients Be Better Off

Assessment Although a physical assessment was never a standard component of the DLA application process, they have been an integral part of ESA since its introduction. Lessons learned from ESA can be applied to PIP, particularly with regard to the way that health professionals make judgements based on observations made at the assessment. One criticism that has emerged is that whereas the ESA assessment may have effectively identified symptoms and limitations that were apparent at the time, they do not accurately reflect how claimants fare in real-life, day-to- day situations. To address this issue, guidelines require PIP assessors to consider what activities claimants can carry out safely, to an acceptable standard, repeatedly and in a reasonable time period. This is a welcome qualification but ultimately, as there is no way to empirically test such things, the claimants score will still rely on the judgement of the assessor. Our experience of ESA assessment indicates that despite guidelines there can still be considerable differences in the way clients physical and mental capacities are scored from one case to another. If, as has been indicated in the case of ESA, clients are assessed very differently depending on which assessment centre they visit, then discrepancies between two different providers may be even more pronounced. We envisage that clients may not agree with the assessors interpretation of their performance, will wish to appeal and will look to advice agencies for help. Bureaux will consequently begin to build up a picture of how accurate assessments are, whether there are common failures and clear discrepancies, and will be able to share this information with policy makers.

Mobility PIP claimants will score maximum points for the mobility component if they can move no more than 20 metres, aided or unaided. This is a more restrictive criteria than DLA, and means that many more clients whose ability to walk is severely limited will not qualify for the enhanced rate. This, as we noted earlier, will also affect their eligibility for the Motability scheme. With less help available to them we are likely to see more clients turning to advice agencies for help, and a greater demand for other voluntary and community schemes. This change could also leave many vulnerable people confined to their homes, where they will be unable to access many services, including advice.

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PIP vs. DLA: Will Our Clients Be Better Off

Daily Living The indications from our survey are that the Daily Living Component of PIP will not map directly over from DLA. There are significant differences such that many claimants currently receiving the care component will find themselves treated very differently under PIP. The changes will also have repercussions for carers who may find themselves losing Carers Allowance or providing greater and different types of care. At the same time, we may see clients who are better off under the new benefit. Bearing in mind the limited nature of our survey and the difficulties of anticipating the judgements made by assessors and decision makers, it is clear that there is a continuing need to monitor the effects of these changes. Evidence gathered whilst working with clients will help us to identify discrepancies and weaknesses in the system, prepare clients for the changes that may lie ahead and provide feedback to policy makers about the effectiveness of PIP.

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PIP vs. DLA: Will Our Clients Be Better Off

Appendix 1: Survey Pro Forma

Personal Independence Payments and Disability Living Allowance - a comparison

Adviser: Client ref:.

Activity

Descriptors

Points

Please tick box to highlight descriptor which best applies

Daily Living Activities

Preparing food and drink a. Can prepare and cook a simple meal unaided b. Needs to use an aid or appliance to either prepare or cook a simple meal c. Cannot cook a simple meal using a conventional cooker but can do so using a microwave. d. Needs prompting to either prepare or cook a simple meal. e. Needs supervision to either prepare or cook a simple meal. f. Needs assistance to either prepare or cook a simple meal. g. Cannot prepare or cook food at all. Taking nutrition a. can take nurtition unaided. b. Needs either - (i) to use an aid or appliance to take nutrition; or (ii) assistance to cut up food. c. Needs a theraputic source to take nutrition. d. Needs prompting to take nutrition. e. Needs assistance to manage a theraputic source to take nutrition. f. Needs another person to convey food and drink to their mouth.

0 2 2 2 4 4 8 0 2 2 4 6 10

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PIP vs. DLA: Will Our Clients Be Better Off

Managing therapy or monitoring a health condition

a. Either - (i) Does not receive medication, therapy or need to monitor a health condition; or (ii) can manage medication, therapy or monitor a health condition unaided or with the use of an aid or appliance. b. Needs supervision, prompting or assistance to manage medication or monitor a health condition. c. Needs supervision, prompting or assistance to manage therapy that takes up to 3.5 hours a week. d. Needs supervision, prompting or assistance to manage therapy that takes between 3.5 and 7 hours a week. e. Needs supervision, prompting or assistance to manage therapy that takes between 7 and 14 hours a week. f. Needs supervision prompting or assistance to manage therapy that takes at least 14 hours a week.

0 1 2 4 6 8 0 1 1 2 2 2 4 8 0 2 2 4 6 8 8 0

Bathing and grooming

a. Can bathe and groom unaided. b. Needs to use an aid or appliance to groom. c. Needs prompting to groom. d. Needs assistance to groom. e. Needs supervision or prompting to bathe. f. Needs to use an aid or appliance to bathe. g. Needs assistance to bathe. h. Cannot bathe or groom at all.

Managing toilet needs or incontinence

a. Can manage toliet needs or incontinence unaided. b. Needs to use an aid or appliance to manage toilet needs or incontinence. c. Needs prompting to manage toilet needs. d. Needs assistance to manage toilet needs. e. Needs assistance to manage incontinence of either bladder or bowel. f. Needs assistance to manage incontinence of both bowel and bladder. g. Cannot manage incontinence at all.

Dressing and undressing

a. Can dress and undress unaided.

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PIP vs. DLA: Will Our Clients Be Better Off

b. Needs to use an aid or appliance to dress or undress.

c. Needs either - (i) prompting to dress, undress or determine appropriate circumstances for remaining clothed; or (ii) assistance or prompting to select appropriate clothing. d. Needs assistance to dress or undress lower body. e. Needs assistance to dress or undress upper body. f. Cannot dress or undress at all. a. Can communicate unaided and access written information unaided or using spectacles or contact lenses. b. Needs to use an aid or applicant other than spectacles or contact lenses to access written information. c. Needs to use an aid or appliance to express or understand verbal communication. d. Needs assistance to access written information. e. Needs communication support to express or understand complex verbal information. f. Needs communication support to express or understand basic verbal information. g. Cannot communicate at all. Engaging socially a. Can engage socially. b. Needs prompting to engage socially. c.Needs social support to engage socially. d. Cannot engage socially due to such engagement causing either - (i) overwhelming psychological distress to the claimant; or (ii) the claimant to exhibit uncontrollable episodes of behaviour which would result in a substantial risk of behaviour which would result in a substantial risk of harm to the claimant or another person. Making financial decisions a. Can manage complex financial decisions unaided. b. Needs prompting to make complex financial decisions. c. Needs prompting to make simple financial decisions. d. Cannot make any financial decisions at all.

2 3 4 8 0 2 2 4 4 8 12 0 2 4

Communicating

8 0 2 4 6

Mobility activities

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PIP vs. DLA: Will Our Clients Be Better Off

Planning and following a journey

a. Can plan and follow a journey unaided. b. Needs prompting for all journeys to avoid overwhelming psychological distress to the claimant. c. Needs either - (i) supervision, prompting or a support dog to follow a journey to an unfamiliar destination; or (ii) a journey to an unfamiliar destination to be entirely planned by another person. d. Cannot follow any journey because it would cause overwhelming psychological distress to the claimant. e. Needs either - (i) supervision, prompting or a support dog to follow a journey to a familiar destination; or (ii) a journey to a familiar destination to have been planned entirely by another person. a. can move at least 200 metres ether - (i) unaided; or (ii) using an aid or appliance, other than a wheelchair or a motorised device. b. Can move at least 50 metres but not more than 200 metres either - (i) unaided; or (ii) using an aid or appliance, other than a wheelchair or motorised device. c. Can move up to 50 metres unaided but no further. d. Cannot move up to 50 metres without using an aid or appliance, other than a wheelchair or motorised device. e. Cannot move up to 50 metres without using a wheelchair propelled by the claimant. f. Cannot move up to 50 meters without using a wheelchair propelled by another person or a motorised device.

0 4

8 10

15 0 4 8 10 12 15

Moving around

1. After completing a DLA application with the client what award of DLA do you expect them to receive?

2. Would the client find it difficult to attend a face to face assessment? If so why?

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