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Welfare Reform Bill

My Lords, the wording of my amendment is taken straight from Statutory Instrument 2678, the Social Security Benefit (Computation of Earnings) Regulations 2009, with the additions of subsections 10 and 11. The reason I have copied the wording of this SI will become clear in a moment. Old welfare reform hands may find my speech strangely familiar because I have been on this particular soap box since 2006. The amendment is about the way benefits are treated for service user involvement, specifically the unresolved problem of those disabled people on benefits who help with NHS research, public health research and social care research. The unresolved problem is the impact on their benefits of out-of-pocket expenses and, possibly, a small emolument paid by the organising body. Disabled people are asked to take part in research studies in these fields not just as subjects but as active partners in the research process. For many severely disabled people, this activity is the most important thing that they do, as they are uniquely placed to take part and they know that their participation may lead to better outcomes, both in the immediate future and for future generations. Plans set out in the health Bill require clinical commissioning groups to base decision-making on evidence-based research. However, unless the universal credit rule on the treatment of certain reimbursed expenses as earnings is amended and the application of the notional earnings rule is removed, disabled people on benefits will continue to be prevented from offering their assistance. Research in health and social care will be used to commission our future healthcare but, as matters stand, two nonsensical bits of red tape in the benefits system will prevent the involvement of many patients. The two obstructive benefit rules were designed for employment and are entirely inappropriate for involvement. The first is the treatment of reimbursed expenses for involvement in research. At this point, I should define what I mean by research. I am not talking about patients who are entered into clinical trials as part of their treatment. I am talking about those who, in the words of the relevant HMRC circular, are, "““invited to attend meetings to give their views on various matters to inform the research process and direction””." Where people are paid a small fee for their help with this research and their expenses are reimbursed by the organising body, both amounts are totalled and treated as earnings. Where the total is above the benefit-earnings disregard, the excess is deducted from their benefits. This is because, as I said, the reimbursement of out-of-pocket expenses is treated as earnings. People may end up with less money the following week or with no money at all for living costs for several weeks. If this happens, they promptly and understandably withdraw their help. My noble friend the Minister has expressed his belief that the earnings disregard for universal credit will represent an improvement on the current earnings disregard for people on ESA and IB, and that this improvement will resolve the problems that I am raising. However, the earnings disregard for the great majority of people who will receive UC for health reasons—that is, disabled claimants—is to be just £40 a week. This is a great deal less than the current earnings disregard of £97.50 a week for those with the most severe health conditions on ESA or IB. It is still less than the earnings disregard for others who are entitled to £97.50 for one year, alternating to £20 the next. Where people who are asked for their involvement in developing public policy have a disability or restrictive health condition, they may require the help of a personal assistant with travelling and personal matters, accessible accommodation overnight or specialist equipment. All these costs are significant and much more than the £40 a week earnings disregard. Under current benefit rules, where the participation is in NHS or social care research, all reimbursed travel costs are treated wholly as earnings. There is a benefit-earnings disregard limit on their earnings, as I have already said. The small fee for their time and the travel costs are totalled and treated together as earnings. Any excess of the total sum above the earnings disregard leads to the person’s benefit being reduced or stopped entirely. In the future, 65 per cent of the excess will be deducted from universal credit. One example is that of a wheelchair-user with high support needs travelling from Leeds to London. His travel expenses and those of his personal assistant come to £240. The personal assistant costs for two days come to £380. Overnight accommodation in a fully accessible room comes to £315. Specialist equipment hire comes to a further £235. This person would lose all his benefits for living costs for at least one week and possibly for four weeks as a result of participating in research for the benefit of the public. This is clearly unjust and irrational. Universal credit policy briefing note 9 on the treatment of income other than earnings, which was published recently, seems to offer some hope that certain out-of-pocket reimbursed expenses may be ignored in some circumstances but it is unclear. The briefing note does not refer to the reimbursed cost of travel. It does not differentiate between the circumstances of employment and the circumstances of involvement. It does not refer to any plans to disregard the cost of travel to the place of involvement. There is a long-standing rule about travel costs, which is based on employment. For an employee, any reimbursement of travel costs between home and work that is provided by the employer is traditionally treated as earnings by both the DWP and HMRC. However, involvement is not the same as employment because it may be for one day or a few hours in the month. A person who is involved in helping with health and social care improvement does not have a wage, just a one-off small fee. The strict limit on earnings for people on benefits means that the fee is not likely to be sufficient to cover travel costs. The universal credit briefing note indicates that while child benefit may continue to be disregarded as income, other reimbursed expenses may be treated as earnings and will lead to the 65p in the pound reduction of UC. Expenses that are reimbursed to an employee by an employer, such as those of a replacement carer or child carer, have been traditionally treated partly or wholly as earnings by DWP and HMRC. It is clearly inappropriate to treat a reimbursement of the occasional but substantial costs of a personal assistant or a replacement carer or child carer for a participant in research as earnings for universal credit. However, perhaps the universal credit policy briefing No 9 offers a window for further clarification around reimbursements for involvement. I would be grateful if my noble friend could shed some light on this. The second obstructive benefit rule that has been designed for employment, but which is entirely inappropriate for involvement, is known as the notional earnings rule. The outrageous matter of notional earnings means that if a person declines to take a small fee because the amount offered is above the earnings disregard, they will be treated as though they had taken the fee and they are likely to be out of pocket as a result of helping with NHS research as a volunteer and are not likely to repeat the experience. As matters stand, there is no commitment to carrying over the legislation introduced by way of SI 2678, the Social Security Benefit (Computation of Earnings) Regulations 2009 in this House in December 2009 by the noble Lord, Lord McKenzie, which, to great rejoicing, removed these two significant barriers to involvement by allowing expenses to be disregarded when benefit entitlement calculations were made and by removing the application of the notional earnings rule. These changes were relevant only to those whose involvement was in the field of health and social care services and not in research. We were disappointed to learn that this new and welcome change in the legislation applied only where the involvement was required by law, and so the entire NHS research programme had been omitted. The benefit changes apply to involvement with local authorities, landlord authorities, NHS trusts and health boards. They do not apply to involvement with the work of the National Institute for Health Research, public health and social care research. Will this amendment cost the DWP money? No, because all we are asking is for a disabled person’s benefits to be undisturbed by their participation in NHS research, public health and social care research. I understand that my noble friend is willing to have a meeting to see whether we can sort out this complex matter. It may therefore help the Committee if we hear from my noble friend at an early stage. I end with a quote from a cancer patient who last year was asked to participate in a patient research panel, which he did for a time. He said: "““My deteriorating health means I need to step down from the PRP, but this will not be the case for many people who could be contributing to research panels if only these DWP restrictions did not prevent them. What a waste of patients’ and carers’ knowledge and experience. Many of us are severely debilitated after cancer treatments and cannot do regular work, but we can contribute something as and when we feel able and it surely keeps us sane—saving money on mental health services. As human beings, we still need to be useful, but the DWP expect us to sit and vegetate””." We must not lose this golden opportunity to put this matter right once and for all. I beg to move.