Welfare Reform Bill

Memorandum submitted by Sam Barnett-Cormack (WR 59)

Summary

As an educated and concerned disabled person, I have been following the developments of welfare reform closely; most of the points in this submission originated as concerns I expressed to my MP regarding the Government's response to the DLA reform consultation; there are a number of points for which the Government has not provided any clear response, or has simply promised that things will become clear later; similarly, there are many details of the proposed reform of DLA into PIP that are not yet clear, obstructing the public, parliament, and your committee from properly making judgements about what is proposed. Beyond this, there are many details that are alarming in themselves, or at least meriting oversight, scrutiny and legislative controls.

Background

1. I am making this submission as a private individual. While the details may not be relevant, I would like to provide a little information about myself. I am 28 years old, have completed both a bachelor's and a master's degree, I am self-employed while pursuing further studies, and I have suffered from a range of disabling conditions over the course of my life, most beginning during my undergraduate studies or later.

2. I read the Government's response to the DLA Reform Consultation, noting several points of concern. I contacted my MP, Eric Ollerenshaw, with these concerns on the fifth of April; his recent response included the suggestion that I edit my observations appropriately and submit them to your committee as part of their scrutiny. While it would have been better to do so sooner, this is the earliest opportunity I have had to do so since receiving the response.

3. As I am writing this, I have also included some general observations and suggestions regarding the bill. Not all of these points relate to disability.

The DLA Reform Consultation

4. When considering the move to two rates of each of two components (pages 17-18 of the government's reply) note is made of concerns that a move to two rates of care component would represent the removal of the current lower rate, particularly given the government's stated goal of removing 20% of claimants (without having assessed the actual levels of need) (point 20). However, the government responses in this section provide no response to this point. Persistent failure to respond to these points is alarming; if the removal of those on the lower rate care component is a goal, it should be admitted; if the government is committed to providing a comparable level of support to that now given, that should be stated. If the government's position is undetermined, that should be publicly stated; further, in that instance, it would seem appropriate for the passage of the bill to be delayed until such time as the details are available to MPs, so that they may know what they are voting on.

5. Also on the matter of rates, I know that some consultation responses observed that having fewer rates of benefit would reduce the degree to which the benefit could be personalised; the government appears to have declined to even acknowledge that point of view. It seems a key point that should be relevant to committee scrutiny of this Bill. I, personally, would see more value in adding a middle rate of mobility than removing a rate of care, particularly given my own experiences of DLA.

6. Regarding the government's response to the question of costs in the first sixth months of an impairment, point 36 on page 21; at present, the mechanisms listed often to do not meet the costs. If a person has a mobility problem that is being investigated towards a diagnosis, the level of support provided is minimal; this has certainly been my experience as I am having a balance problem investigated, and I have had to purchase mobility aids myself without any support or guidance from a relevant professional in such matters, such as an occupational therapist. I have even received contradictory advice on what mobility aids to consider from different doctors. Free prescriptions are only available to those on certain benefits or with a sufficiently low income/savings, when a person may have had a sudden increase in prescription charge burden. The 'range of social security benefits' mentioned seems very much limited to ESA, or in very limited circumstances Income Support; these are benefits that provide basic financial support to cover a basic cost of living, not benefits that take account of the additional costs of living with impairments. Those who are disabled are less able to spend less on food, for example, thanks to not working; some of us are simply unable to prepare meals from scratch using cheaper ingredients, needing instead to use partially-prepared ingredients. Premiums to benefits for the disabled are often passported by DLA, meaning those who are not yet able to receive DLA will not usually receive them. I am not aware of any availability of support for people in this sort of situation to receive help cooking meals.

7. Regarding the repeated assurance that "[t]he detail of the assessment is being developed in collaboration with a group of independent specialists in health, social care and disability, including disabled people themselves", I share concerns voiced by campaign groups that disability industry groups, such as Unum, decried in many instances and even prosecuted in the US for mishandling cases, will be the main groups consulted. Basing the assessments on the advice of a group whose assessments have been challenged in court, with some success, does not sound wise. I would suggest that some characteristics of the assessment, such as its terms of reference and the basic nature of its criteria, should be present in the bill to allow scrutiny by both your committee and by Parliament.

8. Regarding the government's response point 41 on page 23, regarding activities to be included in the assessment, it seems that the list closely corresponds to the existing DLA criteria with several aspects removed. This includes social activities, suggesting that there is no intent to support the disabled in such activities. I am personally concerned that getting up in the morning (summarised currently as 'getting out of bed') is removed, as that is the area in which my needs due to narcolepsy are most pronounced, requiring a significant investment of time from another person. Further, the government reply recognises that many have suggested the inclusion of "maintaining living standards at home", presumably including housework, currently absent from the DLA assessment. This is not represented in the proposed list of assessment elements, possibly suggesting that the government is satisfied that disabled people should not mind living in untidy or unsafe conditions. Regarding the mobility component, it seems that emotional distress caused by moving around outside will now be neglected, and it seems appropriate to ask why. While these aspects of both mobility and care have been removed, it seems that very little has been added in their place. Rather than 'better reflecting' the needs of disabled people, it appears that this is simply a narrowing of criteria.

9. Regarding use and consideration of aids and adaptations (pages 25-26), I would echo the concern that provision of aids and adaptations and support in choosing and funding them is very variable, and I would point out that this is particularly true for those who have not yet received a diagnosis. I would like to suggest that the recognition of the benefit received by any aid or adaptation (particularly where this leads to reduced entitlement to DLA/PIP when compared to the un-aided state of the individual) could be used to passport access to financial support from existing providers (such as the NHS and Local Authorities) in the maintenance, replacement and alteration of these aids, including access to relevant medical professionals. Aids and adaptations that have any cost, and are not sufficiently supported otherwise, should be ignored for the assessment, as the support of such has always been part of the purpose of DLA.

10. Regarding the proposed face-to-face assessment, government response point 57 (on page 28) notes that lessons will be learned from the WCA. I suggest this should include acknowledgement of the fact that many parties, including experts, have found the WCA to be unfit for purpose. There are a range of opinions on the matter; this does not mean that Parliament or the Government should ignore the opinions that are different from theirs, or otherwise inconvenient.

11. On the same issues of face-to-face assessment, the government recognise some dissatisfaction with the WCA, particularly it seeming too 'medical'; there was no explicit recognition of the fact that WCA reports often contain statements at odds with the claimant's experience of the assessment, contradicting evidence from the claimant and their doctors and other professionals. The overall perception of the WCA, by those I have spoken to about it and my own partner, is of a challenging and adversarial system; this is particularly acute once the frequently inaccurate reports from ATOS on their WCA are received. An assessment which gives the impression that the assessor is on the side of the claimant, and wants to help them get all the benefit they may be entitled to, would help with claimant experience; the assessor actually having this role in fact would have the greatest benefit on outcomes and the long-term credibility of the assessment. I would suggest the committee consider offering an amendment stating the purpose of the assessment, and would suggest that is should specify at least a balance between supportive and sceptical roles towards the claimant.

12. Regarding other sources of evidence (pages 29-30), the emphasis is clearly, and understandably, on relevant professionals providing support on a regular basis. People like myself, however. receive very little such support, due in part to a lack of provision of support for particular conditions, and in part due to the lack of provision of support for those whose symptoms have not yet led to a diagnosis. On the first point, I would like to add the commentary that my narcolepsy (which has been positively diagnosed through clinical testing) has very little support available from the NHS in my experience, limited to pharmacological intervention; I have neither received nor been offered any lifestyle or condition management support from the NHS. On the second point, I would highlight that, at any given time, many people are still awaiting diagnosis, and the process may take much longer than 6 months; further, some never receive a diagnosis, yet their symptoms are still considered real and serious by their doctors.

13. The government response regarding claimants keeping the department informed of changes (page 34) does not seem to actually acknowledge or have great relevance to the points mentioned in summarising the public response to the consultation. Scrutiny of the Bill may be better served by government providing some clarity regarding its ideas as to how people will be enabled to keep the department updated, without claimants feeling harassed or challenged.

14. I am somewhat reassured that the government intends to do what it can to maintain current passporting arrangements as the transition to PIP is made. I am concerned that there is not even the beginning of clarity as to which rates will be considered equivalent to which current rates, as many passporting arrangements depend on the level and components received.

15. Not in direct response to any point from the response, but inspired by the question of sharing assessments and information (points 101-104 on page 39), I have an observation that might be of value to those considering this further; the current provision of DLA enables some people, including myself, to support themselves (in my case mutual support between myself and my also-disabled partner) without recourse to adult social care that would otherwise be necessary; an example would be through the purchase of more expensive partly-prepared food, allowing us to continue to cook for ourselves, and enjoy nutritious meals. I would contend that such situations frequently represent a saving to the wider public purse.

16. Regarding the government response point 120 on page 42, I am concerned that the government "intend to encourage individuals to contact the Department to discuss their case, before entering the formal dispute process"; there have been reports of introductions of such schemes being used to dismiss the claimant's chances of success, or otherwise dissuade them from appealing. Such contacts should be used to attempt to accommodate the claimant and give them polite, but not forceful, explanations, never to directly dissuade appeal. Such reported activity seems to fly in the face of the promotion of access to justice, and may even be questionable on human rights grounds; I'm more familiar with the general and international principles than with the UK HRA, but a government department discouraging people appealing their decisions by downplaying their chances of success would seem very questionable.

17. Regarding the role of advocates in the claims process, I am concerned that the government identifies these primarily as carers and family members. Particularly given the proposed removal of welfare benefits from the remit of legal aid, I am concerned that access to independent, expert advisers will be sorely lacking, reducing the ability of claimants to assert their own rights. Perhaps the committee could consider offering an amendment guaranteeing independent advice to claimants seeking reconsideration or considering an appeal. A possible source of funding might be penalties applied to the provider of assessments in cases where a decision maker or appeal goes against their assessment.

Other Points

18. Regarding the Bill's original published version section 4 (1) (d), I feel it would be safer if the bill made some specification as to what is meant by "receiving education", rather than leaving the interpretation entirely to regulations, so as not to permit the exclusion of those pursuing part-time education or adult education classes; this is particularly important where those pursuits may improve employment potential in the future.

19. Regarding section 26 (4), the phrase "at any time before making the claim" is concerning; it would suggest that a claimant may lose entitlement by such a failure even a considerable time before the claim.

20. Though I find it difficult to refer to a particular area of the bill, I am concerned that the bill does not preserve the current lower work requirements for Working Tax Credits for the disabled. This lower requirement is currently passported by DLA; the bill appears to allow for a requirement to seek to improve income on those who are employed, as a condition for receipt of the element of the credit that replaces WTC. I would urge the inclusion of a clause that guarantees that those who are working despite disability are able to obtain such top-up income while working fewer hours than might normally be required.

21. Section 25 seems to indicate that private partners may have full discretion to determine work capability, sanctions, etc. It seems fine to allow them to determine that someone has limited capability at their discretion, but a determination that they do not should be taken by a DWP decision maker, as at present; the Harrington Review highlighted the need for such decision makers to be able to take decisions that do not necessarily agree with in-person assessments, for example.

22. Section 34 (e) abolishes Council Tax Benefit, but the Bill does not appear to replace this with anything else. I believe that people would be reassured by an explicit provision that liability for Council Tax will be reduced based on means-testing, and eliminated for those receiving out-of-work benefits other than on the basis of contributions.

23. I feel there should be close scrutiny of section 69, completely ending discretionary payments under the Social Fund. I feel it would be beneficial to provide assurances that unexpected capital costs, particularly urgent ones such as replacement of a cooker or bed, will be met in some way. Even where claimants could use hire-purchase to obtain such items, which they may not due to low credit-worthiness, these options are often expensive, and do not send the right message about financial responsibility and over-reliance on credit.

24. Section 77 (1) (a) and (2) (a) give the option of a minimum age for receipt of mobility component; given the difficulties young adults have often, in my experience, faced with recognition of mobility problems, I am concerned at the open nature of this option for governments. I feel it would benefit from some guarantee that people will not be excluded from mobility support on the basis that "they are too young to have mobility problems".

25. Regarding the amendment made by Section 102 (1); at present, overpayments of benefits made through no fault of the claimant are unrecoverable. It seems that this may end that situation, which I would see as an unfriendly move. It is not hard to imagine that such overpayment may no longer be available to the claimant to repay. If the unrecoverable status is to be ended, there should be a public discussion of that change and the reasons for it.

26. I find it concerning that Schedule 1 Section 6 provides for payment of benefits in the form of vouchers. It is my understanding that experiences in other countries include that payment in the form of vouchers is found dehumanising. For a less left-wing argument, I would also be concerned that it would relieve claimants of the freedom to choose the provider of goods and services. It would be better that such vouchers be guaranteed to be acceptable at all providers, including smaller local shops. I can obtain a wide range of basic foodstuffs cheaper at a local whole-food cooperative than at major supermarkets. The same section provides that the voucher may be limited in duration of validity, preventing claimants from building any modest savings by voluntarily adopting a lower quality of life.

May 2011