Personal Independence Payments - Consultation Due date: 30th April 2012 Response by the Disability Law Service Dated: 30th April 2012 Disability Law Service Telephone: 020 7791 9800 Minicom: 020 7791 9801 Fax: 020 7791 9802 Email: advice@dls.org.uk Website: www.dls.org.uk
The following is a response by the Disability Law Service in relation to the Personal Independence Payments ('PIP') consultation. You will see that we have put three main changes which we believe are crucial to the working of the regulations, we have then went on to briefly reply to the nine questions as per the consultation document. The Disability Law Service welcomes the principle of simplifying the current rules regarding Disability Living Allowance but finds that the proposed PIP regulations require amendments to ensure they are fit for purpose. We request that the Secretary of State amend the PIP regulations to include the following: 
To include an exemption such as that found in Employment Support Allowance Regulations 29 and 35. This would give the decision maker the discretion to award the benefit to the claimant because they meet the spirit of the benefit even if their claim would otherwise fail because of the mathematical nature of the proposed eligibility criteria.
To place the notes defining how the general descriptors should be interpreted into the Regulations themselves. For example, the points at 7.3 and 7.4 of Annex A: Second draft of assessment criteria on page 44, are very well drafted and would enhance the understanding of the descriptors.
To remove the confusion found in the descriptor ‘Moving around’ in schedule 3, activity 2 of the regulations so that it adequately reflects the problems of a claimant to whom is unable to gain independence by being able to walk to a places like a supermarket.
Background The Disability Law Service has been providing advice and representation to claimants with disabilities in welfare benefit matters for over 30 years. Presently we provide free advice in welfare benefit matters in writing, in person and by telephone. Providing this service gives the Disability Law Service a unique insight into the challenges faced by claimants and so we feel well-placed to respond to this consultation.
In recent years, there has been an exponential increase in the number of people requesting welfare benefits advice particularly in relation to Employment Support Allowance ('ESA') and Disability Living Allowance ('DLA'). For example, from January 2012 to March 2012, there were 26,000 downloads of our welfare benefits factsheets. These factsheets provide advice on filling out application forms as well as appealing benefits decisions.
Furthermore, in recent months, we have noticed an increased number of complaints regarding medical reports compiled by ATOS Healthcare. This demonstrates the need for changes to be made to the current system to ensure that the descriptors reflect and can be applied to address the needs of the claimant.
We note that the rise in requests for advice coincide with the plethora of changes to the welfare benefits system in the form of the Welfare Reform Bill and the introduction of Universal Credit. At the same time, the Secretary of State for Work and Pensions is seeking to withdraw free advice and representation from those who wish to appeal decisions by the Secretary of State regarding their welfare benefits. Therefore, the key to any new regulations must be simplicity and ease of understanding as claimants try to negotiate the minefield of welfare benefits by themselves.
The Disability Law Service welcomes any changes which simplify the eligibility process that claimants have to be put through in order to apply for benefits. This includes simplifying the rules in order that claimants can understand the eligibility criteria.
However we do not believe that the rules should be simplified 'at any cost'. We submit that while the current rules may not be perfect, they do give the tribunal and the decision maker enough discretion to be able to award a person DLA provided they fall within the criteria.
We submit that the criteria within the current draft of the PIP regulations are over simplified and are too prescriptive for unusual cases. The criteria fail to provide any discretion for the decision maker to give an award to a claimant who may fall within the spirit of the regulations but does not fall within the very specific scenarios presently imagined in the draft regulations.
As such we request that the following modifications to be made to the regulations so that PIP may provide the personal independence to those most in need.
Submissions 1. Exemptions We note that PIP is based on the model of the eligibility criteria which has been used for Incapacity Benefit ('IB') and now for ESA. We agree that such a model makes it easy for
the claimant as they are able to add up the number of points they believe they are entitled to and quickly assess their eligibility for PIP. However, ESA and IB allow the decision maker to award the benefit even if the claimant does not meet the specific descriptor but does fall within the spirit of the benefit. However, such an exemption is not present in the draft regulations and we are concerned by its omission.
For example, if a potential claimant for IB did not achieve the required 15 points via the descriptors then that claimant could be classified as qualifying via regulation 27 of the Social Security (Incapacity for Work) (General) Regulations 1995 as seen below.
Exceptional circumstances 27. A person who does not satisfy the all work test shall be treated as incapable of work if in the opinion of a doctor approved by the Secretary of State— (a)he suffers from a previously undiagnosed potentially life-threatening condition; or (b)he suffers from some specific disease or bodily or mental disablement and, by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if he were found capable of work; or (c)he suffers from a severe uncontrolled or uncontrollable disease; or (d)he will, within three months of the date on which the doctor so approved examines him, have a major surgical operation or other major therapeutic procedure.
A claimant of ESA would require 15 points to receive the benefit. However, Regulation 29 of the Employment Support Allowance Regulations 2008 gives the decision maker the discretion to place a claimant within the limited capability for work group as seen by the regulation below: Exceptional circumstances
29.—(1) A claimant who does not have limited capability for work as determined in accordance with the limited capability for work assessment is to be treated as having limited capability for work if paragraph (2) applies to the claimant. (2) This paragraph applies if— (a)the claimant is suffering from a life threatening disease in relation to which— (i)there is medical evidence that the disease is uncontrollable, or uncontrolled, by a recognised therapeutic procedure; and (ii)in the case of a disease that is uncontrolled, there is a reasonable cause for it not to be controlled by a recognised therapeutic procedure; or (b)the claimant suffers from some specific disease or bodily or mental disablement and, by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for work.
The Employment Support Allowance Regulations also provides for a similar exemption for those who may be eligible to be in the support group for ESA. A copy of the descriptor is seen below:
Certain claimants to be treated as having limited capability for work-related activity 35.—(1) A claimant is to be treated as having limited capability for work-related activity if— (a)the claimant is terminally ill; (b)the claimant is— (i)receiving treatment by way of intravenous, intraperitoneal or intrathecal chemotherapy; or (ii)recovering from that treatment and the Secretary of State is satisfied that the claimant should be treated as having limited capability for work-related activity; or (c)in the case of a woman, she is pregnant and there is a serious risk of damage to her health or to the health of her unborn child if she does not refrain from work-related activity. (2) A claimant who does not have limited capability for work-related activity as determined in accordance with regulation 34(1) is to be treated as having limited capability for work-related activity if—
(a)the claimant suffers from some specific disease or bodily or mental disablement; and (b)by reasons of such disease or disablement, there would be a substantial risk to the mental or physical health of any person if the claimant were found not to have limited capability for workrelated activity.
As seen by the above, the exemptions in both IB and ESA allow the decision maker to award the benefit to those who require it but for whom the nature of their disability means that they do not match the ‘one-size-fits-all’ scope of the descriptors. Therefore, we submit that a similar set of exemptions should be created for the two components of PIP to ensure that vulnerable people are able to access society and reduce the financial burden that having a disability can create.
2. Guidance notes We request that the notes defining how the general descriptors should be inserted directly into the PIP regulations. The points at 7.3 and 7.4 of Annex A: Second draft of assessment criteria on page 44 provide helpful clarification of the descriptors.
This will aid decision makers and judges in clarifying whether a person can perform any of the activities and how often they should be able to perform them in order to judge whether they should fall under the test.
Without the addition of the above paragraphs into the regulations, the activities in schedule 2 and 3 of the draft regulations cannot be correctly interpreted. These paragraphs would provide a vital safeguard which when written into the regulations would also be a legal safeguard. This could help guarantee that the safety and independence of those who have disabilities is taken seriously.
3. Mobility We request the Secretary of State amend the descriptor ‘Moving around’ found in schedule 3, activity 2 of the regulations so that it adequately reflects the problems of a
claimant who is unable to gain independence by being able to walk to a places like a supermarket
The descriptors for moving around state three possible distances that a person can walk. They refer to mobilising up to 50 metres, up to 200 metres and over 200 metres. The guidance refers to this as being seen from the point of view of a person moving unaided from one seating position to another unaided.
The guidance goes on to refer to this envisaging a person being able to move from a car park to a shop or for a longer distance, then being able to move around the shop. This raises numerous problems which would inevitably end up in the higher courts but which could be dealt with by redrafting of the moving around descriptor.
Primarily there is the question of what happens if a person can move 250 metres but then is unable to walk for another 30 minutes or an hour or is possibly incapacitated for many hours. Under the new descriptors they would be classified as being able to walk even though they clearly are severely limited in their ability to do so.
Secondly what happens if a person does not have a car? In relation to weighting then if a person can only walk 50 metres then we submit they should be classified as being eligible for 12 points.
We understand the aim of the Secretary of State to attempt to redraft the high rate mobility component but the method employed leaves too many questions. We request that the Secretary of State clarify how soon a person should be able to walk again after walking either of the three distances so as to be classified as being able to carry out the activities. We also request the Secretary of State redraft the descriptors to take this and the above into account as presently we do not believe that this particular descriptor provides adequate or even near adequate protection for those whom have severe mobility problems.
Consultation Questions Q1 – What are your views on the latest draft Daily Living activities? In the explanatory note we set out revised proposals for the activities relating to entitlement to the Daily Living component (activities 1-9). These include three new activities: Communicating, Engaging socially and Making financial decisions. We would welcome your views on the activities. Are the changes and the new activities an improvement? Do you think we need to make any further changes? As per our points above we agree with the general framework that has been put in place and the improvements but believe that no set of descriptors will be able to envisage each of the problems that a person will have to deal with. This we submit is why we request that an exceptional cases regulation is created for each or the components as per above. Q2 – What are your views on the weightings and entitlement thresholds for the Daily Living activities? In the explanatory note we set out proposals for the weightings of descriptors in the activities relating to entitlement to the Daily Living component (activities 19). In this document we have set out the entitlement thresholds for the benefit. How well do you think they work to distinguish between differing levels of ability in each activity? How well do you think they work to prioritise individuals on the basis of their overall need? Do you think we need to make any changes to weightings or thresholds? We believe as per above that the weighting system is good for a number of the descriptor especially number 10 but number 8 ‘Engaging socially’ does not appear to take into account the level of issue a person with mental health difficulties may have in society and we feel that this descriptor should be able to have points up to 12 so that on this descriptor alone a person can receive the highest rate. This is because with the problems that a person can have from engaging socially can cause them to loose any ability to deal with real life. This can remove all personal independence without affecting the other descriptors and as such it should be that it has the option of having 12 points. Q3 – What are your views on the latest draft Mobility activities? In the explanatory note we set out revised proposals for the activities relating to entitlement to the Mobility component (activities 10-11). Are the changes an improvement? Do you think we need to make any further changes? As stated above we submit that the moving around descriptor number 11 does not provide in any way the adequate amount of protection for those whom are virtually unable to walk. This may be because the Secretary of State considers that they expect that if a person can walk 50 metres repeatedly then they may not need high of high rate mobility. But the key point is that this is not clear from the descriptors and therefore the points system does not appear to
provide adequate protection. We request as above that more detail is given in relation to this as well as an increase in the points given as stated above. Q4 – What are your views on the weightings and entitlement thresholds for the Mobility activities? In the explanatory note we set out proposals for the weightings of descriptors in the activities relating to entitlement to the Mobility component (activities 10-11). In this document we have set out the entitlement thresholds for the benefit. How well do you think they work to distinguish between differing levels of ability in each activity? How well do you think they work to prioritise individuals on the basis of their overall need? Do you think we need to make any changes to weightings or thresholds? See above Q5 – What are your views on how the regulations work regarding benefit entitlement? Draft Regulations 1 to 4 set out how the assessment will work to prioritise individuals and determine entitlement to the benefit. How well do you think the draft regulations achieve the intent of the assessment set out in the explanatory note? Do we need to make any changes? We have no issue with this other than the need for a regulation regarding exceptional circumstances. Q6 – What are your views on how we are dealing with fluctuating conditions? Regulation 4(4)(c) of the draft regulations and paragraphs 7.13 to 7.15 of the explanatory note set our how we are proposing to assign descriptors to people who have fluctuating conditions. These are that: Scoring descriptors will apply to individuals where their impairment(s) affects their ability to complete an activity on more than 50 per cent of days in a 12 month period. If one descriptor in an activity applies on more than 50 per cent of the days in the period – i.e. the activity cannot be completed in the way described on more than 50 per cent of days – then that descriptor should be chosen. If more than one descriptor in an activity applies on more than 50 per cent of the days in the period, then the descriptor chosen should be the one which applies for the greatest proportion of the time. Where one single descriptor in an activity is not satisfied on more than 50 per cent of days, but a number of different descriptors in that activity together are satisfied on more than 50 per cent of days – for example, descriptor ‘B’ is satisfied on 40 per cent of days and descriptor ‘C’ on 30 per cent of different days – the What are your views on this approach and how this is set out in the regulations?
We have no issue in relation to the fluctuating conditions as long as there is an exceptional cases route as stated above which could deal with any unusual cases that have not been forseen. This would also require the below Q7 paragraphs to be placed into the regulations. Q7 – What are your views on the definitions of ‘safely’, ‘timely’, ‘repeatedly’ and ‘in a timely’ manner? In the assessment an individual must be able to complete an activity descriptor reliably, repeatedly, safely and in a timely manner. Otherwise they should be considered unable to complete the activity described at that level. In paragraph 7.4 of the explanatory note we set out draft definitions for these as follows: Reliably means to a reasonable standard. In a timely fashion means in less than twice the time it would take for an individual without any impairment. Repeatedly means completed as often during the day as the individual activity requires. Consideration needs to be given to the cumulative effects of symptoms such as pain and fatigue – i.e. whether completing the activity adversely affects the individual’s ability to subsequently complete other activities. Safely means in a fashion that is unlikely to cause harm to the individual, either directly or through vulnerability to the actions of others; or to another person. What are your views on these? Some organisations have suggested that these terms should be included within the regulations. Do you agree? If so, do you have views on how we should do so – for example, as a general provision or referring to them in the detail of activity descriptors? Q8 – What are your views on the definitions in the regulations? The draft regulations contain a number of definitions in Regulation 1 (Interpretation) and Schedule 1. Do we need to make changes to any of these? We see no required changes to this section. Q9 – Do you have any other comments on the draft regulations? Regulations 5 to 10 of the draft regulations relate to elements of the assessment process for Personal Independence Payment, around the requirement to provide information and attend face-to-face consultations, the consequences of failing to meet these requirements and when individuals might have good reason for not meeting these. Do you have any comments on these regulations?
We are concerned that the testing carried out in relation to PIP is more intense than is likely to happen with normal ATOS assessments which could lead to a skewed set of results. This is because of the time pressures faced by ATOS personnel as well as the fact that it appears that nurses are carrying out assessments. Please also see the conclusion.
Conclusion The Disability Law Service understands the desire to simplify DLA and therefore the rationale for designing PIP so that it mirrors the points-based eligibility criteria used in ESA and IB. However we are unable to understand a rationale for using such pointsbased method without also including the exceptional circumstances regulations which is included in both ESA and IB. We therefore request that an appropriate exemption is included for each component of PIP.
We also do not think that it is appropriate to place key sections of PIP in guidance rather than into the regulations such as we have highlighted with paragraphs 7.3 and 7.4 of page 44. Finally we request that the Secretary of State redraft the ‘Moving Around’ descriptor so that it clearly states how soon a person should be able to walk again after one of the set distances. We also request that the 50 metres descriptor is given 12 points and that the 50 to 200 metres descriptor is given 8 points. Sean Rivers Solicitor Disability Law Service