Benefit barriers to involvement: Finding Solutions

A report from the seminar held by the Joint Participation Steering Group

Acknowledgements

Five organisations supported the seminar Benefit Barriers to Involvement: Finding Solutions, from which this report arises. Thanks are extended to those organisations for their support in sponsoring and helping to organise the event, and for contributing to the production of this report. The five organisations are: 

The Commission for Social Care Inspection
The General Social Care Council
Shaping Our Lives
Skills for Care
The Social Care Institute for Excellence

Foreword by the Chairs of the Seminar

Dame Denise Platt, DBE, Chair of the Commission for Social Care Inspection

The Commission for Social Care Inspection (CSCI) is the single regulator for all social care in England. Our first and foremost value is to ‘put the people who use social care first.’

Since our inception we have worked hard to make this aim a reality. We involve people who use care services in our work in many ways, as members of boards and reference groups, and as experts by experience in our inspection teams.  

We want to remunerate people for their involvement with us. Sometimes that might be through meeting the costs of the necessary expenses that involvement can incur. At other times it means paying people an appropriate fee for their involvement.

The benefit system presents many challenges for our work.  The vast majority of people that we seek to involve are in receipt of state benefits, and the regulations, and the barriers created, for both them and us are significant.

I was delighted to co chair this important seminar on behalf of the Joint Participation Steering Group with Peter Beresford from Shaping Our Lives User Network. The seminar brought together a wide range of people with the aim of exchanging information about the benefit barriers to involvement and identifying joint solutions.
At the seminar we heard directly from people who use services and organisations about the difficulties presented by the current system. I was struck by the very real issues that people face, and the consensus around the room that these are real problems for both organisations seeking to involve, and those who want to get involved.

There was a genuine fear from people about how getting involved might affect their benefit entitlement. There was also a real commitment from organisations wanting to involve people to do things in the right way and within the law.

People tell us they want to be involved to help improve services and make things better for others. Financial reward is important, but it is not the main motivator. The future of social care relies upon involving people who use services in many ways, and the current benefit rules preclude many people. This report has identified some useful solutions that I truly hope can be taken forward.
Professor Peter Beresford, Chair of Shaping Our Lives

There can be few issues raised by people who use services where there has been so much concern and so much agreement as there has been about the lack of fit between the current benefits system and getting involved. A very wide range of organisations - social care and health, research and regeneration, regulators and professional organisations, service providers and commissioners, and of course, service user, carer and community organisations - have all joined forces to highlight the longstanding and continuing barriers operating to restrict people’s involvement because of benefits law, policy and practice. 

Many different stakeholders have been of one mind over this issue. Their concern has been growing. So has the evidence highlighted the problems. Just as people who use services report that the benefits system is preventing them getting involved and contributing to their communities as they wish to, so social care, health, and other public organisations are making clear that the benefits situation is preventing them honour legal and other requirements to involve public, patients and people who use services as fully as they would wish to.

We know that people who use services have been reluctant to get involved because they fear that their benefits may be put at risk. I know personally of cases where people have had benefits wrongly withdrawn because of this and it has taken months for them to be reinstated. I know of more people who have had unjustified warnings from benefits organisations which have led them to call a halt to involvements that they have had in social care and health.
And of course a very much larger, unquantifiable number of people, steer clear of getting involved because of the worries they have that it may result in their income being put in jeopardy for no good reason.

We cannot underestimate these fears and anxieties. They reflect an unhelpful climate of suspicion and distrust. I lived for ten years on such benefits. It was a difficult experience in many ways. The uncertainty that went with it increased my anxiety. It took me a long time after I came off benefits to be able to pick up the post and not fear the thud it made when it came through the letter box. I was always dreading that there would be some problem with my benefits. I have always felt that the experience and consequences of being on benefits for me at least has been as difficult to deal with as my experience of distress and involvement with the psychiatric system. It now seems so unfair that people’s altruistic impulse to contribute is raising such fears for them.

That’s why we need to resolve the current problems that the benefits system is creating - restricting people’s involvement, reinforcing barriers in the way of it and making for inequality. The recent government emphasis on involving public, patients and people who use services is something to be commended. It is strongly in tune with people who use services’ own commitment to contribute to their communities and to the production of good services and support.

I believe that this seminar represents a significant stepping stone in taking forward this shared ideal. That is why I and Shaping Our Lives have been very pleased to be associated with it. Shaping Our Lives is an independent service user controlled organisation and network, made up of and working across the wide range of people who use social care and health services. We are committed to involvement which is why the issues raised by the seminar are so important. People who use services were involved in the seminar’s planning and organisation and were centrally involved as both contributors and participants. A wide range of other stakeholders also contributed to the discussion. Representatives of the Department for Work and Pensions took part and were able to hear first hand people’s views and direct experience as well as offering their own. 

The seminar has added to the evidence base and there is a commitment that the issues it has raised will be fed directly to the Minister. My hope is that every person who wishes to, will be able to get involved and make their contribution and that they can be reassured that this will be a safe and valued experience that can be part of extending and improving their life chances. The views expressed in this report of the seminar make clear that this is a shared aspiration and I hope many people will read and be guided and inspired by them.

Executive Summary

•	The involvement of people who use services is a key government policy in the development of social care and health services. Involvement activities vary and can range from consulting on specific policy initiatives, to inviting people to play an active part in the design, delivery and monitoring of services. 

•	The term benefit barriers to involvement is used to describe the ways in which the current benefit system discourages or prevents people in receipt of benefits from getting involved.

•	The purpose of the seminar was to bring together relevant stakeholders to share information on the benefit barriers to involvement; provide clear examples of how these barriers impact upon involvement; and to propose solutions to the current problems.

•	The importance of involvement in the development of better social care and health services was emphasised at the seminar. People who use services, as well as social care and health organisations, highlighted the integral role of involvement in:
○	Enabling the insight and expertise of those who have experience of social care and health services to be fed through into the design, delivery and monitoring of services
○	Promoting active citizenship
○	Supporting public bodies to meet their statutory duties.

•	Payment for involvement was seen by delegates as an explicit demonstration of the value of people’s contributions, which helps to create a more level playing field between those who are employed by social care and health organisations and those who use social care and health services.

•	The current benefit rules are having a direct impact on the groups of people who can undertake involvement activity, and the type of involvement activity that people can engage in. Social care and health organisations emphasised that they are struggling to involve a diverse group of people in their work because of the current benefit rules.

•	Four main barriers were identified:
○	Most people on benefits are limited to earnings of £5, £10, or £20 a week
○	People fear being wrongly disallowed incapacity benefits
○	Reimbursed expenses (for travel, personal assistants and replacement carers) can be treated as earnings
○	Even if people offer to be involved for free, as volunteers, their benefits can be affected by the notional earnings rule.

•	Delegates identified further barriers to involvement which include:
○	The ‘joint problem’ facing people in residential care who are anxious about undertaking involvement work because of risks to their benefits, and because they are likely to be charged for some of their residential care costs
○	The lack of clarity and ‘attitudinal barriers’ amongst some Jobcentre Plus officials about the current benefit rules on involvement
○	Further anxieties in relation to the Voice Risk Analysis system, currently being piloted.

•	Delegates at the seminar provided a number of clear examples of how the benefit barriers are impacting upon involvement. For example:
○	People explained that they are choosing not to undertake involvement activity because the current rules on payment, expenses and notional earnings would leave them financially worse off
○	Others are choosing not to participate because they fear it will trigger a review of their benefits which may leave them financially vulnerable
○	Some people have been subject to mistakes made by Jobcentre Plus officials, which have caused them financial hardship and emotional stress. They are unwilling to undertake involvement activity in case it leads to further mistakes being made
○	Some people who have undertaken involvement in the past and were unaware of the benefit rules, have found themselves in financial difficulty following deductions from their benefits.
•	
The delegates identified a number of core principles that are central to any future reform to the benefit rules on involvement. These include:
○	People in receipt of benefits should not be excluded from involvement activity as a result of barriers within the benefit system
○	The benefit system needs to be simplified and made more flexible.
○	The benefit system in respect of involvement must be adapted to ensure that the poorest people are not discriminated against. Earning disregards are currently only attached to means tested benefits and the very low earning limits per week exclude many people on these benefits from participating
○	Although involvement can provide a pathway to work for some people, it must not be assumed to represent capacity for work

•	Delegates proposed a number of solutions to solve the current benefit barriers to involvement. These include:
○	Reforming the system to ensure that payment for involvement should be treated in the same way for all types of benefits, whether means tested or non means tested
○	Payment for involvement should be treated within the benefit system on an annual or a monthly basis, rather than the current weekly arrangement
○	The precedent that has been set within the benefits system for local authority councillors should be applied to those who undertake involvement activity
○	Reimbursed travel expenses, reimbursed replacement carer costs and reimbursed personal assistants/support worker costs should be viewed as necessary expenses, and therefore should not be treated as earnings
○	The notional earnings rule should not be applied to involvement activity. This would ensure that people who offer to participate for free, on a voluntary basis, are not penalised and left financially worse off
○	There needs to be more training for Jobcentre Plus staff to ensure that they are clear about the benefit rules for involvement, and do not make unnecessary mistakes which can cause anxiety and financial hardship for people who have contributed their expertise for involvement purposes.

•	The seminar from which this report emerges took place on 22 May 2007. It was organised by the Commission for Social Care Inspection, the General Social Care Council, Shaping Our Lives, Skills for Care and the Social Care Institute for Excellence. The event was supported by the Joint Participation Steering Group, which is a group of national organisations concerned with good practice and promoting and sharing best practice in user and carer participation in social care and health.