Parents as commissioners

1. Parents as commissioners Dr Glenys Jones and Elaine Hack Vineyard, Nottingham 15th May 2007

2. Aims of the study • To explore the extent to which parents are involved in commissioning services • To identify the issues involved for authorities in enabling parents to commission services • To make recommendations on how parents and authorities can be supported in increasing parental involvement in commissioning

3. Definitions Individual budgets • ‘A system which involves streamlined assessment across agencies responsible for a number of support funding streams, resulting in the transparent allocation of resources to an individual, in cash or in kind, to be spent in ways which suit them.’ (Social Care Institute for Excellence, 2007) • Direct Payments a part of this – largely for support at home – introduced in 1997 • AIM: to empower service users and control the spiralling costs of traditional care (SCIE, 2007).

4. Methods used to collect data • 5 families from each of the 9 LAs identified by PPS to be interviewed/to complete a questionnaire • Focus groups held with parents to discuss issues • Those involved in commissioning interviewed/to complete a questionnaire • Analysis of websites and documents produced by the 9 LAs on commissioning and Direct Payments • Literature review on research in this area – UK and internationally

5. Questions to parents 1 • Level of satisfaction today • What has most helped your child? • What has most helped you as parents? • Educational history and involvement • Breaks away for the child/holiday activities • DLA and DP

6. Questions to parents 2 • What would you like to have been different? • What would make a difference to your child? • What would make a difference to you as a family? • Same money – how would you spend it?

7. Questions to commissioners • Current use of DPs • Calculation of DPs and maximum • Promotion of DPs • Support for parents in using DPs • Payment of DPs • Potential benefits/issues • Involvement of parents in commissioning

8. Findings to date from parents and those involved in commissioningPARENTS • 30/45 parents have been interviewed or completed a questionnaire • 6 families had more than one child with ASD • 24 boys 6 girls

9. Knowledge and Use of Direct Payments

10. Issues arising from parent interviews • There is a ‘team around the child’ – but they do not work as a team – little or no evidence of keyworker system • ‘We would like honesty, knowledge, competence, cohesion and lots of money.’ • Different practices in informing parents re DP

11. Support which parents would value • Befrienders in the evenings and weekends • Sitting service • Holiday activities • Overnight stay for child • Appropriate social contacts – as parents tend to be their only friend • Back up when a crisis – not just the Police! • More advice on the help you can get – financial/ physical/ emotional

12. Views on DP by parents • Would like to be able to pay relatives • ‘SW told us about it (we have 2 boys) – but seemed a mountain of paperwork; interviewing; CRB checks and effort’ • ‘We understand that because of his exceptional needs and the need for a high staffing ratio – we would need to make up the financial shortfall in funding – Could we find staff willing to put up with his behaviour for £7 an hour?’

13. Family factors and assessment of need • Parents may have other demands which affect ability to manage and live with child – does assessment/costing formula reflect this? (eg housing; other family demands; finance; support from family members)

14. Particular issues in ASD Demands of living with children with ASD are harder to assess than other conditions such as physical disability as Demands change with time; child can require much higher levels of supervision; often emotionally and physically draining; may not be around self-care; may involve harm to self or others; constant verbal challenges may be the most difficult/tiring for parents; behaviour of child very much affected by situation and people within it – ie dependent on context AND will vary with the tolerance levels of parents and their understanding of their child and family support and resources

15. Issues around DPs • Advantaged may be more advantaged by this system – how do we protect the interests of ALL parents and children and ensure equity? • Professionals anxious about involving parents more – time-consuming; challenging; expensive • Resources are finite – so how can we encourage parents to be reasonable in their claims? – although services procured by families may be cheaper • In ASD payment may need to be more flexible to address times of crisis – rather than a fixed monthly or yearly amount

16. A parent’s comment on DP • Heard of it from a parent • Don’t know how to apply • Do I need a social worker to get it? • Don’t know what the criteria are • Would it affect any other payments?

17. Personal assistants: concerns • Are generally low paid, female, work anti-social hours, not specifically trained, ill-defined job description, lack external advice and support and may face very challenging situations • So may be a high turn-over; risk to the child and family; high stress for the PA

18. Personal assistants: positives • Flexible • Part time • Local • Fulfilling • Closer emotional ties with the family and service user • May lead to another career

19. Potential benefits of DPs • Support at home may be less expensive than support within a Unit and it is already customised for the child • Extended schools – offer great opportunities – DP to pay for support – eg SPACE groups (Support and Play for Autistic Children to Enjoy)

20. Payment to families – how? Is it? • A lump sum which they can use in any way • A defined budget which has to be accounted for • Expenditure reimbursed with or without a ceiling • Vouchers for specific services • Credit system – using a credit card

21. If I could choose what money was spent on? • Private education • Interview his LSAs myself • Don’t feel we get much extra • Support in m/s school • 3 acres of land with planning permission • Appropriate interventions not just managed • Pay me to teach him at home

22. Information from the LA websites • Conditions attached • Spend it on services the authority agreed they would provide following an assessment • Keep account of the money • Agree to show us what the money has been spent on – Derbyshire asks for an account of this every 4 weeks – Leics suggest a separate bank account for these payments • Spend it on ways that keep your child safe and well

23. Advice from the websites Before you employ a worker: • Ensure they are suitable for the job • Arrange a proper contract of employment • Northants mentions CRB check – Notts does not • Northants can refuse DP if it feels the parents is not ‘capable of managing the payments’ • Northants – need to abide by employment law – eg ‘register with the Inland Revenue and having employers insurance if you employ personal assistants to care for your child.’

24. Findings from other research 1: Parents/carers of children with disability – have received DP less often than other groups (along with the elderly and those with mental health problems). Many schemes in Europe have been set up based on an inadequate assessment of demand and set up costs – which have caused problems later AND unmet needs are often uncovered – which can ‘overwhelm new systems’.

25. Findings from other studies 2: • ‘Clarifying the role, qualifications, skills, employment conditions, training and pay of personal assistants is central to the success of most schemes.’ SCIE, 2007)

26. Findings from other studies 3: Professional anxiety • Change always brings anxiety – but can be minimised by information, training and good policy guidelines • Good models of effective practice elsewhere – and costs and benefits for all will help

27. Findings from other studies 4: reasons for limited promotion of DP in the UK • Need for better information and training • Reluctance to relinquish power, fear of deskilling and job losses • Concerns about risk • Concern about costs – especially start up costs • Lack of strategies generally and experience in user-involvement • Uncertainty about the capacity of service users and paternalism

28. Findings from other studies 5: reasons for limited promotion of DP in the UK • Findings suggest that those ‘local authorities that are generally committed to the provision of intensive community care provide more intensive DP packages.’ • ‘Local authorities performing ‘best’ according to current Commission for Social Care Inspection performance standards tend to spend LESS on each DP recipient than poorer performing authorities with fewer DP recipients’

29. Findings from other studies 6: use of relatives • The organisation In Control which helps service users access DP has found that: where relatives have been paid (in exceptional circumstances), there have been few problems

30. Findings from other studies 7: Brokerage • Brokerage has been a response to the need to support recipients of DPs and IBs – a service to give advice and administrative support - but again there is a need to define the role, recruitment, costs, training, pay and employment status of those who provide this service. • 2004 survey of SSDs in England showed almost all had funded such a service – only 10 of which were in-house – most independent and a few run by service-users.

31. Findings from other studies 8: support needed by parents/users of DP • To access the scheme • To manage the money, budget and accounts • To identify and access the required services • To employ and manage staff

32. Extract from Wendy Lawson’s poem The future ‘My future may not depend on my stock So much as it does upon sources Sources of warmth, sources of care I depend on the nurture to be for me there.’

33. Finally • If you know someone in your authority who you think we should interview – a family or a professional – OR there are questions you would like us to address, then email me at g.e.jones@bham.ac.uk