Travelling Hopefully lessons from England for NDISDr Simon Duffy ￭ The Centre for Welfare Reform￭ 15th October 2012 ￭ Adelaide, South Australia ￭
Striving for decent entitlementsLessons from the Englishexperience of self-directedsupport
Welfare State is a good thing -just designed wrong.Centre has 70+ Fellows whowork internationally to developsocial innovations.We believe in the fundamentalequality of all human beings andthe value of human diversity.
Part OneThe ups and downs of the English experience
Design is a funny word. Some people thinkdesign means how it looks. But of course, if youdig deeper, its really how it works. The design ofthe Mac wasnt what it looked like, although thatwas part of it. Primarily, it was how it worked.To design something really well, you have to getit. You have to really get what its all about. Ittakes a passionate commitment to reallythoroughly understand something, chew it up,not just quickly swallow it. Most people dont takethe time to do that.Steve Jobs
Community ‘care’ better than an institution, but • Not by much • Institutional services • Basic human rights lacking • Isolated from community • Citizenship undermined by systemWe do this to diverse, interesting & gifted peoplewho only want to contribute, live and love.
Professional Gift Model• Help is received as a gift for which I must be grateful - difficult to change or challenge• Help defined by someone else and delivered as a fixed service.• Help is inherently incompetent it takes control away from me• Blame moving up and down systems of hierarchical control• Community cut off from awareness of its own proper role.
Citizenship Model of Support• Individual in control• Life led in community• Clear entitlement to funding• Support agreed with professionalsChallenge: a new paradigm - but one that has tobe developed from within the old system itself.
Life, not services - this means • Human rights • Independent living • Citizenship • Social model • Dignity • Social inclusion • Valued social roles • A good lifeKeys to citizenship model developed as aframework for good service design
Simon Duffy - my journey1. London (1990-94) - IF plus service brokerage2. Glasgow (1996-99) - ISFs and successful andradical programme of deinstitutionalisation3. North Lanarkshire (1999-2002) - Self-directedsupport for families, reforming social work role4. In Control (2003-2009) - SDS used to reform allof social care, rapid uptake, many lessons5. The Centre for Welfare Reform (from 2009) -supporting social innovators locally and internationally
20 year-old subversive, viral strategyChange driven from outside, within and below
What I’m proud of - in the best places...• Citizens and families are • People drive the design trusted more. and delivery of their support.• Citizens and families are stronger and more in • No new support systems control. of ‘brokers’ - instead better use of community• People’s lives are much and professionals. better.• People use services less, • It costs much less than community more & have the old system. more friends.• Money is citizen’s and can be used flexibly.
Mistakes and failures• Pseudo-scientific • System tries to ‘make’ assessment tools (RAS people be creative Versions 3, 4 & 5) • ‘Person-centred• Failure to build-in ‘time planning’ industry limits’ • On-going means-testing• Support plan treated as income & social capital a contract • No clear legal right to• Not enough focus on entitlement for support peer support• System was not easy enough for professionals and people
Reform entitlement to rationing1948 - NHS free healthcare c. gov provides1948 - SSD means-tested residential care l. gov provides1980 - B&L free residential care - RIP 1992 services claim1988 - ILF v1 funding for IL - RIP 1993 professionals design1992 - CC LA commissioned care packages l. gov commissions1992 - DLA disability income supplement - RIP citizens claim1993 - ILF v2 Ibid - IFF local funding in place - RIP l. gov claims1996 - DPs opt out of social care with <75% l. gov funds2000 - SP extra support funding l. gov claims2003 - IC... a personal budget for social care l. gov funds
Place N Change6 Sites Phase I Report 60 -18%17 Sites Phase II Report 128 -9%13 Sites IBSEN Report 203 -6%Northants 17 -18.7%City of London 10 -30%Worcestershire 73 -17%
In reality - progress is mostly modest• Old habits die hard - old • New money ‘for culture still in place. implementation’ was wasted and has made• When central people lazy. government drives change it kills • Government cuts now innovation. target people with disabilities and social• Targets have led to care. cheating - lots of people now with bogus budgets.In many places it feels like ‘zombie personalisation’ - peopleare going through the motions but have forgotten why theyare making the changes.
Innovations develop to a curveEnglish innovation institutionalised here ignoring this pattern damages the innovation
Mistake 4: Planning• A plan is not a contract • At best a plan is proxy - making people do evidence for the their plan is competence of the inconsistent with budget-manager human rights • Use and throw away• We learn by doing - plans are a poor tool to promote creativity
Part TwoKey variables in international practice
Internationally systems of individual funding varyin how they tackle a set of critical questions.1. Entitlement - what quality of entitlement will be created?2. Assessment - how do we determine a fair allocation that reflects need? (or, what do we mean by need?)3. Means-testing - do we give people with the same disability less if they have more than the average level of other assets (money, family, community, creativity)?4. Vouchers or cash - what degree of trust and flexibility do we have in our citizens?5. Capacity & safeguarding - who is in control? how do we keep people safe?6. Support - how do we help people get the best value from their budgets?Interestingly most places never actively explore and test thesequestions. Instead cultural assumptions tend to have a powerfulimpact on the unconscious design of local systems.
International ‘movement’ (?) over 50 years oldChallenge - to give • USA and Canada - Patchy, voucherised andpeople control in a way bureaucraticwhich is: • Scandinavia - universal,1. Sustainable highly professionalised2. Flexible • Southern Europe -3. Universal restricted to older people4. Community-focused • Holland - flexible, but5. Empowering then bust • Germany - ordered andTo give people control, unfairwithout then secretlysneaking it back again. • UK (direct payments) - privatised and unfair
For Israel the only unprecedented feature of thetrial was that, for the first time (since the year70, when Jerusalem was destroyed by theRomans), Jews were able to sit in judgement oncrimes committed against their own people, thatfor the first time they did not need to appeal toothers for protection and justice, or fall back uponthe compromised phraseology of the rights ofman - rights which, as no one knew better thanthey, were claimed only by people who were tooweak to defend their “rights of Englishmen” andto enforce their own laws.Hannah Arendt, Eichmann in Jerusalem
Good system of entitlements is:1. Democratic - backed by the A right is not effectual by people, defined in law. itself, but only in relation2. Legal - tested and refined by to the obligation to which the courts. it corresponds, the3. Clear - everybody knows the effective exercise of a right exists. right springing not from4. Responsible - its clear who the individual who has the corresponding duties. possesses it, but from5. Effective - it provides what is other men who consider necessary. themselves as being6. Reasonable - it is practical under a certain obligation and affordable. to him.7. Consistent - in harmony with other rights Simone WeilOnly the powerful get gifts to which they have no right. Whengovernment gives to the powerless an entitlement will exist. Butthe gift will be so designed that it doesn’t feel like anentitlement.
Human rights of people with disabilitiesa) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;b) Non-discrimination;c) Full and effective participation and inclusion in society;d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;e) Equality of opportunity;f) Accessibility;g) Equality between men and women;h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities. General principles governing UN Convention on the Rights of Persons with Disabilities
How do we define what’s necessary?• The standard should be for a life of citizenship - a good life.• But individual funding is just one element of what we use for a good life.• It cannot be specified too precisely because its value depends on use.• It’s only possible to make a general judgement: ‘necessary for someone Giving money doesn’t give a like you’. good life. Good lives are made - not given.
Means-testing love & community• If you give people with family less because they have family you are means-testing love.• Means-testing promotes erosion of social capital and generates crises and increases per capita cost.• As a social justice strategy it levels down - rather than building a universal foundation for everyone.
When does government money stop beinggovernment money? Money can’t always belong to the government. At some point it must belong to people. The citizen knows best, cares most and is most affected by spending money well and carefully.
Problems and advantages of vouchersa) Vouchers don’t always come dressed as vouchers (rules, receipts, accounts, menus, plans, sign-offs etc.)b) Vouchers represent a failure of trust in the recipient - but they may be a good first step.c) Vouchers are inefficient. They reduce value of $ by limiting choice and flexibility.d) Vouchers values are set by the service prices.e) Vouchers tend to stigmatise - they tell other people you are not trustworthy.f) Voucher systems are costly - cash is turned into a voucher just to be turned back to cash.
Things that might be worth thinking about1. Sustainability - How will you avoid overspend, inflation and long-term erosion of family and community capital?2. Local control - How will you ensure the right relationship between federal government, states and local communities?3. LAC - How will you build on an a uniquely Australian innovation?4. Innovation - How will you ensure on-going learning and innovation at every level: (a) citizens (b) communities (c) systems and (d) government?
Australia seems to be trying to solve at least 5problems -1. To create clear right to support for people with disabilities (legal framework)2. To specify role(s) of state vs. commonwealth in fulfilment of that right3. To design a system that is consistent with citizenship and human rights (especially, freedom, choice, control, participation and social inclusion)4. To tackle the underspend on disability (financial)5. To ensure long-term sustainability (eligibility and resource allocation)
Sustainable (not just affordable) entitlementsrequire a system that:• Works to a budget - entitlement does not imply blank cheques• Sets norms and expectations - create a reasonable framework for citizen planning and professional practice.• Is pro-citizen - flexible, allows citizen discretion to use to maximum value, alongside their other ‘assets’• Is pro-family - builds on and supports the most important form of social support that exists• Is pro-community - incentivises, rather than supplanting, stronger communities• Empirical and dynamic - driven by real experience of citizens and communities, revisable over time
Threats to sustainability include• From famine to flood - too much money too quickly invites bad practice, inflated expectations and chaos• Means-testing (in all its forms) - levels down and reduces social and community capital• Letting businesses drive demand - overspend is guaranteed• Letting government, services or professionals drive demand - overspend is probable• Making system hostage to the market - letting service providers use price to dictate entitlement• Rewarding community failure - shifting resources away from communities that are more supportive
Reform entitlement to rationing £1948 - NHS free healthcare c. gov provides ++1948 - SSD means-tested residential care l. gov provides -1980 - B&L free residential care - RIP 1992 services claim ++++1988 - ILF v1 funding for IL - RIP 1993 professionals design ++1992 - CC LA commissioned care packages l. gov commissions -1992 - DLA disability income supplement - RIP citizens claim -1993 - ILF v2 IFF local funding in place - RIP l. gov claims -/++1996 - DPs opt out of social care with <75% l. gov funds --2000 - SP extra support funding l. gov claims ++++2003 - IC... a personal budget for social care l. gov funds --
Remember Jesus and the story of the talents -Jesus didn’t give anyone a blank cheque. If youwrite a blank cheque then you will...a) Grossly overspend - if businesses, charities orother governments can make claims against itb) Modestly overspend - If professionals makeclaims for other people against itc) Probably be okay - If people make claims forthemselvesAlternatively, don’t write a blank cheque. Set abudget, and split it fairly. Later review what youlearned and try to do even better at both settingbudgets and splitting them.
Local community investment• The context for individual funding is community.• Building welcoming local communities is part of the role of local government.• Better places make money go further.• Can you incentivise helpful local investment?
LAC: The Australian innovation• Sophisticated professional role, developed by WA.• Hard to replicate without appropriate values and leadership.• Usefully increases community capacity and reduces need.• Can an innovation simply be adopted,scaled up and bolted on?
Is it possible to use legislation to:• Define rights - not just to money but also to choice and control• Define overall responsibility - i.e. to NDIA• Define responsibility to provide necessary budget to fund achievement of those rights (i.e. capped by budgeting process or taken from a hypothecated source)• Define responsibility to work with States, people with disabilities and local communities to learn and develop best possible systems - improving them over time.Why not build a dynamically intelligent system?