Self-directed funding in Australia July 30 th 2009

1. Self-directed funding in Australia July 30th 2009

2. Introduction • To introduce the work of Julia Farr group • To define and describe Individualised Funding • To talk about some of the successes • To identify the key issues • To introduce In Control Australia • To unravel the mysteries of resource allocation • To summarise the considerations for service agencies • A framework of landmarks • Safety and safeguards

3. Julia Farr Association • The latest organisation in a movement started by Julia Farr in 1878 • 128-year history as a largely institution-based service provider, as Home For Incurables and then Julia Farr Centre • Big changes in service delivery during 2004-06 • All services passed in to Government in 2006, and Julia Farr Association was born

4. Julia Farr Association • Not a service provider • Not government-funded • Not a formal advocacy agency • Focus on research, information, and talking with the disability community • Amplifying what we hear and learn, to influence change

5. Why did we take a look at Individualised Funding? • Aspects of Robbi’s background • Work as a case manager in Wales, using person-centred planning • Redevelopment of disability support services from institution to community, in New Zealand • Reform of mental health services in Wellington, New Zealand • Individualised solutions in South Australia, for people leaving the institution • JFA – disability community highly frustrated by current disability support funding arrangements • No ‘picture on the box’ • ‘back-foot’ service planning, and where people have to give worst account of circumstances to have any chance of getting a service • No real choice over what’s available

6. JFA publications on this topic • Individualised Funding: a summary review of its nature and impact, and key elements for success 2007 • Individualised Funding: general considerations on implementation 2008 • Both popular, with thousands of downloads following publication • Printed copies sent to all Parliamentarians in Canberra, and will eventually go to all others around Australia

7. Self-directed funding (individualised funding) • Definition • “..public funding that is allocated to the individual based on his/her unique strengths and needs, and placed under the control of the individual to enable them to live in the community as a full citizen.”Dowson and Salisbury (1999)

8. Practical Components of Individualised Funding • Genuine control over the funds • Equitable system for sharing out the funds (in UK a growing number of Local Authorities are using a Resource Allocation system (RAS) • If wanted, support with planning • If wanted, support with brokerage • If wanted, support to manage the arrangements • Community development (with emphasis on citizenship, participation and relationships)

9. Reported Benefits • If people gain control, their lives will improve and costs will decrease. Conroy et al (2002) • By giving consumers the flexibility and independence to spend their money as they see fit, (Individualised funding) encourages the evolution of long term care services that are responsible to consumer needs rather than to government regulations. Polivka and Salmon (2001, pg20) • “…all the available evidence suggests that (Individualised funding) leads to greater use satisfaction, to grater continuity of care, to fewer unmet needs, and to a more cost-effective use of scarce public resources Glasby and Duffy (2007)

10. Alleged challenges to the approach • Exploitation of clients • It will cost more • No take up of the opportunity • Diminishment of professional safeguards • Exploitation of staff • Diminishment of agency sustainability • The burden of accountability • Limited horizons • Individual and community • The danger of perceived panacea Read our publication for our response in each case

11. Summing up the opportunity • A culture of relationship and integration • Collaboration between funders, so that Individualised Funding supports a range of lifestyle issues • A framework that is free from burdensome and invasive bureaucracy • A default assumption that people living with disability and their families have the capacity to be successful in organising their own support

12. Summing up the opportunity • Early access to information about the options • A tangible body of resources that are genuinely under the control of the person • The availability of support to assist the person to set out a personal vision, to identify support needs, and to organise arrangements that the person wants • The availability of support to assist the person control a range of management and compliance issues associated with being a budget holder, and an employer/director of staff

13. Summing up the opportunity • A Government-endorsed framework of appropriate safeguards and evaluation • Government commitment to regulating market conditions to avoid abuse and exploitation of one or more of the various stakeholders • The availability of resources that support authentic person-centred planning • A distinct and heartfelt emphasis, shared by all stakeholders, on individual/family/community capacity-building, so that there is a blend of paid and unpaid (freely given) supports in the person’s life.

14. With my own eyes and ears • I visited the UK to look at their move to Individualised Budgets

15. History in UK • Direct Payments, enabled by legislation in 1996 • Growth in use • ‘all or nothing’ – take traditional arrangements or organise everything yourself • Not easily accessible to people with differing capacities, or not wanting to do all the organising themselves • Emergence of Individualised Budgets, that: • Took a fresh approach to allocation • Gave more choice about how much involvement people want to take on • Early results promising, and now UK Government is pushing for wider availability

16. highlights • Where it’s working well, it is really good: • Simple • Creative • Good outcomes for the person and family • Not more expensive than traditional arrangements

17. Where it’s not working well • Implementation has been made complicated. Poor communication, and heavier bureaucracy, especially around risk management and other constraints • No encouragement for people to ‘think outside the box’ and imagine better • With insufficient information, people are more likely to arrange what they had before • Financial benefits become clouded

18. Where public funders are doing it well, you find… • A commitment to the values and the journey of transition • A coherent and cohesive leadership team • Investment in arrangements that assist people and their families to explore what’s possible

19. Key issues – 1the future of ‘case management’ • Successful Individualised Funding demands changes in the way ‘case management’ happens • Shift away from rationing and gate-keeping, towards partnering and checking • Information, including technical stuff about housing/legal/employment etc • Researching what’s available locally • Facilitation, including circles of support • Support planning • Brokerage of supports • Negotiation and mediation • Advocacy – supporting the person's choices • Shifting culture away from professional control

20. Key issue 2 – investment in community development • Community mapping is critical – finding out what is out there and who is doing what • Akin to Asset-Based Community Development

21. Key issue 3 –investment in sector resources for people to work through what’s possible • The voices of people living with disability and families are embedded in service systems – both governance and operations • Consumer/family led agencies governed by people living with disability, and agencies governed by family members, are available to assist people with planning, brokerage and/or hosting

22. Key issue 4 – shifting to ‘front-foot’ planning • Most human services are organised on the ‘back foot’, where people have to be in crisis before there is a significant response • A shift to the ‘front-foot’ demands • Investment earlier, and • Based on people’s strengths not their deficits, and • Focused on capacity-building

23. Key issue 5 – imagining better • If you don’t, you’ll organise what you had before • Reclaiming the right to ‘ordinary’. Don’t think about ‘service’, think about getting a life • Reclaiming the right to dream big • Managing risk safely • Perseverance – getting to ‘better’ happens one step at a time

24. The Picture On The Box • When you do a jigsaw puzzle, it is much harder to complete it if you don’t have a picture on the box. It even becomes harder to work out if you have the right pieces in front of you. • It is the same with building a lifestyle for you and your family. If you don’t have a vision for how you want your life to be (the picture on the box) it becomes much harder to work out the pieces you need and how they fit together • It is the same for funders and service agencies and communities. If they don’t build a vision for what they want their funding/efforts to achieve, then they won’t know what pieces they need and how they come together.

25. In Control Australia is a movement of voices – individuals and organisations – seeking the widespread availability of self-directed funding, and associated supports In Control Australia is a place for: • Reference, information and awareness • Critical enquiry and reflection • Dialogue and exchange • Collaboration • Leadership and influence

26. In Control Australia’s current work, to help Change thinking and Practice • Website • Developing communities of interest, so that people in similar situations can connect together • people living with disability • Families • Service agencies • etc • Forums in every state and territory • Telling stories • Partnering with individuals, service providers and government • Encouraging research and critical enquiry

27. Underlying Principles • Self-directed funding is much more than getting funding …

29. Its just... yes but... no but... A form of rationing rights-based For people with some types of disability all people with disability For people with disability to employ support workers all service forms For a few for everybody Direct Payments Many different management routes

31. Citizenship Model • Citizens live in communities • Citizens have rights • Citizens have responsibilities • Citizens should be able to shape their support to fit their lives • Services serve citizenship

32. Building a new System Self-Directed Funding

33. There are at least 6 sources of support to help people decide what to do with their budget and to manage their budget

34. 6 control options

35. Resource Allocation System (RAS)

36. The Challenge of organising public funding • We live in a cash-limited world and public funds are finite (unless you’re a banker) • Public accountability demands that funds be allocated and distributed: • With a measure of equity • With a measure of prioritisaiton • Which imparts a sense of accountability and responsibility to the government office(r)

37. The Challenge of organising public funding • Traditionally achieved in two main ways: • Block contracts for services • Individual contracts for services • Both characterised by the public funder retaining control over what is bought and what is available to be bought. Paternal-passive relationship (we’ll figure out what you need and what you can have • The time (and public funds) involved in gate-keeping

38. Professional in control • Community merely a tax payer • Services dominated by professional and provider interests • Individual is rightless - unable to control their own support • Resources are inflexible and cannot be personalised • Perverse incentives set up for the individual and family

39. Change in paradigm • Countering the irony of professional intervention • Reclaiming personal authority

40. Re-engineering (there must be a better way) • Efficiency (it costs less to do it) • Effectiveness (added value in terms of benefits for those targeted) • Work-shifting (making sure a task is done by the person best-suited to do it)

41. Re-engineering and RAS • Re-engineering has helped semi-automate the gate-keeping function • The RAS takes it another step further, where the link between ‘the needs I have’ and ‘the funds available to me’ is fast and simple • “I have a need for assistance and the RAS tells me how much pubic funds I may be able to get” – the magic box

42. RAS • ‘Magic Box’ • Where a person’s support needs score corresponds to an indicative allocation of public funds

43. RAS - some typical ingredients • Population-based information about people’s need for assistance • In formation about what the service responses have cost per person, in dollar terms • Clearly stated public policy imperatives • The driving values, such as choice and control by individuals and families • The prioritised areas of demand • Clarity about the amount of funds available overall • A sensible way of quickly and easily assessing a person’s support needs, to produce a score that translates to a funding allocation

45. Immediate benefits #1 – funds gate-keeping is smoother • All the main thinking about rationing is done once when the scheme is designed, and converted into: • the scoring of the self-assessment tool • The formulae within the RAS (using something as simple as a spreadsheet)

46. Immediate benefits #2 – person/family are centrally involved in the process • The support needs assessment tool is REALLY easy to use • Based on two premises • People are the best experts on their own support needs • You don’t need a complicated assessment tool tyo work out the level of assistance someone needs

47. Immediate benefits #3 – case manager resources can be used for something else • CM is no longer the heavily involved gate-keeper • CM is no longer the default professional assessor • CM moves into a role of interpreter • All of which means you need less traditional CM time

49. DISCLAIMER • RAS, and the control it affords people, is a means to an end • Other important conditions include; • Good information • Imagining better • Networks • ‘good neighbour’ community development

50. For service provider agencies • Providers need to get the point • Transition in the way businesses operate will be a significant journey, particularly for larger providers • That journey is much harder to initiate and sustain if the organisation’s leaders don’t connect with the point of it all • The need for leadership beyond ego