Payment for being an involved service user/carer

1. Payment for being an involved service user/carer Sue Hinder & Sara Morris 26 January 2006

2. Background Offering payment to recognise value of people’s contribution is seen as good practice. Recently more guidelines have become available: • INVOLVE (2003) • Social Care Institute for Excellence (2005) • Department of Health (2006)

3. The options • Volunteering • Expenses reimbursed only • Payment for work done • Variable rates for variable involvement • Allowances and fees • Salaried posts • Key element of social inclusion • Continuity of involvement • Becoming professional?

4. Volunteering • Involvement can be on a voluntary basis • Undertaken freely and by choice • Rewards? • May be moral benefits – helping improve services • May be personal benefits – e.g. social and learning opportunities • Out of pocket expenses reimbursed • Travel, carers, telephone, personal assistant etc • Reimbursement of expenses and advice about benefits entitlement - reported as an important factor in whether people volunteered (National Centre for Volunteering survey)

5. Payment and value • Reward and recognition • Incentive • “Ideally,remuneration should reflect the commitment given to the organisation and the impact on the person’s life or work responsibilities” (WDC) • Enabling equitable access to involvement – broader range of people • Supports balancing power differential in research team

6. Making payments • Type of activity • Levels of responsibility • Skills and experience • Time and commitment • Hourly/ daily/ flat/ sessional rates? • Employment rules and regulations likely to apply (e.g. minimum wage)

7. Some examples of rates

8. How Payment affects Benefits • Governed by Permitted Work rules • £78 per week • Less than 16 hours per week • 2 or 3 days a month • Permitted Work (work, training or voluntary) must be reported.

9. Earnings Disregard • Means-tested benefits • Every penny over £20 taken off benefits • £10 if with a partner • Does not take into account that you may earn £60 one week and nothing the next • But can pay monthly in arrears

10. Supported Permitted Work • Named support worker • £78 per week and allowed to keep it all.

11. Non means-tested benefits • Incapacity Benefit and Severe Disablement Allowance (without means-tested top up) can earn £78 per week and keep it. • Disability Living Allowance (for care and mobility needs) not affected by earnings but involvement may prompt needs to be re-assessed.

12. Non means-tested benefits • Permitted work for 6 months • Can be extended by another 6 months • After 12 months claimant can reduce earnings to £20 per week or; • Do Supported Permitted Work with a named support worker.

13. Child care costs • Up to £60 per week for child under 11 years. • Must be with a registered childminder • Does not affect benefits

14. One-off cash gifts • Will not affect benefits so long as they do not breach the savings rule.

15. Tax • Research volunteers, lay participants, participants in clinical trials allowed reasonable costs for travel, subsistence and participation without being liable to tax. • Excess of “reasonable costs” are taxable as Miscellaneous Income

16. Tax • If amount paid for “reasonable costs” is £8,500 or more then treated as earnings. • Donating to charity can affect both tax and benefits.

17. Payment methods • Variety of methods • “Skating on thin ice” • Gift vouchers – unclear • LETS systems – only £100 per year • Pay to voluntary organisation and grant to individual. • Is there a legal way of doing it?

18. Confused? • Lack of clarity • Lack of understanding by Jobcentre Plus staff • Risk of being seen as fit for work.

19. Scared? • Difficulty of signing off and and on again • Risk of losing invalidity entitlement. • Stress!!!

20. “Consultancy on the cheap” • “Community consultants” • How much would an organisation have to pay for consultancy? • At least £500 per day

21. What do we want? • “Earnings disregard” increased substantially. What level? • No risk of claims being re-assessed as a result of involvement • Empowering not punitive approach

22. Political will, political lobbying • MPs • Government ministers • Opposition parties(socialpolicychallenge.com) • Parliamentary questions • Letters, meetings,websites

23. It’s up to us • Boring but important. • Raising awareness • Giving information • Influencing the political agenda

24. References Department of Health. Cooley A & Lawrence Z (2006) Reward and Recognition. The principles and practice of service user payment and reimbursement in health and social care. A guide for service providers, service users and carers. Department of Health Lennox A et al. A practical guide for involving the public in health and social care services. Leicestershire, Northamptonshire & Rutland Workforce Development Confederation Ryan T & Bamber C (2002) Pricing participation: A survey of organisational payment practice to users and carers for expenses time given in service development and delivery. Working Briefing paper version 1. North West Mental Health development Centre. Steel R (2003) A guide to paying members of the public actively involved in research. INVOLVE Service User Research Group England (2005) Guidance for Good Practice: Service User Involvement in the UK Mental Health Research Network. Turner M and Beresford P (2005) Contributing on equal terms: Service user involvement and the benefits system.Adult services report 08.Social Care Institute for ExcellenceSocial Care Institute for Excellence, London

25. Websites which may be useful • INVOLVE www.invo.org.uk • Social Care Institute for Excellence www.scie.org.uk • Volunteering England www.volunteering.org.uk • Service User Research Group Englandwww.mhrn.info/dnn