Social Security Regulations

My Lords, anyone who has followed the campaign on easing barriers to involvement for people on benefits will realise what a milestone this legislation represents. The Minister has been fully engaged with it, certainly for as long as I have, and I pay warm tribute to him for his work on this issue. I had originally tabled a "take note" Motion to this order to mark the end of this long campaign to allow all those service users on benefits who help public authorities to plan, design and monitor their services to be able to keep their reimbursed expenses without those benefits being affected. The orders under discussion remove two benefit rules: one on reimbursed expenses and the other on notional earnings. However, as my Motion explains, the new rules enshrined in these orders, although welcome, only cover involvement as prescribed by law, not by policy guidance, and could cause terrible confusion in Jobcentre Plus offices over the payment of benefits. I shall try to explain the background to these orders as succinctly as possible. All kinds of bodies are required by law, or by policy guidance, to involve service users and, sometimes, their unpaid carers in the health and social care field. These bodies include local authorities, the NHS, universities which train social workers and undertake research, the Care Quality Commission, the General Social Care Council, Skills for Care, the National Institute for Health Research and many others. The rationale is, of course, that people who receive health and social care services are those best placed to make a contribution to improving standards by giving their views on the planning, design and monitoring of those services. The perspective that these people can bring is key to the development of good practice. Service users assist in a wide variety of ways, such as inspecting residential care services or psychiatric hospitals, helping to train social workers and advising on research studies. They participate in all manner of committees which design and monitor health and social care services. Often, as a matter of policy, those with the greatest needs, such as those with severe recurrent mental health problems and multiple admissions to hospital, are invited to become involved. Government policy has for several years been to ensure that service users and carers are not left out of pocket as a result of involvement, to reimburse these expenses and to offer payment of a small fee where appropriate to incentivise participation. Travel costs from their home to their place of involvement are reimbursed, either for public transport or for their own, perhaps adapted, car. People with a learning disability may need a facilitator—perhaps a speech facilitator—to assist them, the cost of which is reimbursed, as is the cost of a personal assistant for some wheelchair users. So far, so good. However, difficulties have arisen because many service users involved with public authorities in this way are on benefits, and there are, quite rightly, strict rules about the amount of money that a person can be paid while on benefits rather than in paid work. When I moved an amendment on this subject during the Report stage of the Welfare Reform Act 2007, the Minister announced that the amount that people who are on means-tested or income-based employment and support allowance could earn for up to 16 hours a week of permitted work was being lifted from a maximum of £20 a week to the same amount allowed for those on contributory ESA, which is now £93 a week. That would apply for 52 weeks only, after which, as with Cinderella at midnight, the original amount of the disregard of only £20 a week would apply. Welcome though the change that the Minister announced was, it did not alter the fact that, where a small payment was made and the reimbursed costs of travel and possibly of a replacement carer, a child carer, a facilitator or a personal assistant were treated as earnings and totalled with the payment, even the limit of £93 a week was in many instances too low to ensure that benefits were not affected. Many services users and carers who were not aware of the strict earnings rule found that their benefit the following week was reduced, sometimes to nil, simply as a result of their assisting with government policy. In these instances, many service users and carers quite understandably dropped out of further involvement. If the service user understood the rules and declined to accept any payment or reimbursement, or a lesser amount than that offered, because it might interfere with their benefit payment, the notional earnings rule kicked in, and the amount that the person could have received was deducted as though it had actually been received. These two rules have now been changed by the instruments—hurrah for that. That is the background in a rather large nutshell. However, not everything in the garden is quite lovely yet. The main problem identified by many consultees on the regulations is that there are public bodies, as well as charities and voluntary bodies, to which the legislation will not apply. This is the reason for my Motion to regret. I shall give some examples, first, of public bodies to which the regulations do not apply. I gather that the legislation does not apply to involvement in research concerned with the protection and promotion of public health, and research undertaken in or by the Department of Health, its non-departmental public bodies and the NHS. It includes research undertaken by charities, the research councils and universities within the health and social care systems. In 2005, the Department of Health issued the second edition of the research governance framework for health and social care, which requires that: ""[Research] participants or their representatives should be involved wherever possible in the design, conduct, analysis and reporting of research"." The director-general of research and development for the Department of Health has written to all NHS trusts and health authorities saying that, ""the national ambition is to double the number of patients taking part in clinical trials and other well-designed research studies within five years"." The NHS operating framework states that, ""the NHS must play its full part in supporting health research … All providers of NHS care will need to increase their participation in research"." The Department of Health provides strong guidance for service user involvement, but involvement is not required by law. Universities are required by law to involve service users and carers in the delivery of social work training courses, but where the same university or further education institution might undertake research or provide a degree-level course in, let us say, psychology, although it is considered good practice to involve people with experience of using mental health services, involvement is, again, not required by law. A similar dilemma arises for not-for-profit organisations, charities and voluntary organisations that represent people who use health and social care services. The DWP has advised certain charities that where an organisation to which the legislation does not apply is commissioned by another organisation to which the legislation does apply to involve service users and carers in the piece of work, the benefit changes will apply—but not otherwise. Let us say that Mind is commissioned to support service users to be involved in hospital inspections by a national body that is required by law to do this. Mind understands that benefit rules have changed, so it reimburses travel expenses and pays a small fee within the permitted work limits, and there is no problem. However, when it sets up a steering group of service users to monitor the development of guidance for those coming off medication, it runs into problems. For example, Elizabeth and Jane are on benefits in view of their long-term mental health problems and are part of a steering group that also took part in the hospital inspections. They are given £12 travel reimbursement plus £20 for the second episode of involvement, although they were offered £40. When they tell Jobcentre Plus what they were offered, however, they have £20 notional earnings and the travel expenses deducted from their benefits because the second episode of service use was not required by law. This puts an enormous burden on Jobcentre Plus staff who have had to undertake research into whether a non-departmental body, institute for further education, not-for-profit organisation or charity is involving service users and carers because it is acting in accordance with its internal policy or on behalf of a public body that is required to involve service users by law. In paragraph 8.1 of the Explanatory Memorandum to Statutory Instrument SI 2009/2678, under "Consultation outcome", the department acknowledged that although the proposal is warmly welcomed, ""some have questioned the fact that it will only apply to service user activity in the public sector"." We are then told that: ""The Department will evaluate the impact of this change before taking a view as to whether it should be extended beyond those service users who are engaged by public bodies"." This may make service users and carers uncertain about their position, and may make some of them reluctant to take the risk if their benefit income could be docked. Will the department evaluate the impact of this change as soon as possible so that any confusion about which episode of participation by service users the benefit changes will apply to will be kept to an absolute minimum? I note that the Social Security Advisory Committee minutes of August this year include a paragraph about this very matter. A member of the committee asked specifically about research, and was advised by a DWP official that research was not covered by the regulations, but that in the light of this the DWP would have to look again at payments with regard to research and come back to the committee. I have three questions for the Minister. First, according to the DWP, the term "service user groups" is intended to cover individual service users and carers who are unpaid friends or relatives. However, public bodies are concerned that the term does not adequately describe the various circumstances of involvement that may often be arranged with individuals rather than groups, and that mention of carers is not always made. I think the noble Baroness, Lady Pitkeathley, will speak more on this in a minute. Will clear guidance be given to all Jobcentre Plus officers and benefit advisers so that this information is correct? My second question is about the term "expenses". I understand that the DWP has said that the definition of expenses is intended to include all expenses that are required for involvement, including those for travel, a replacement carer, childcare and the cost of a personal assistant, support worker or facilitator. However, social security legislation does not recognise these terms, so guidance to Jobcentre Plus decision-makers will be very important. My third question is about the term "notional expenses" in the statutory instrument. Should that read "notional earnings", or are the two terms the same? Finally, the Minister does not have to urge me not to press the Motion. It would be against the spirit in which we have all worked to bring in these important changes. I reiterate my thanks to him for all that he has done about this so far, and I look forward to the debate and to his reply. I beg to move.