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Human Rights & Citizenship the meaning of self-directed supportDr Simon Duffy ￭ The Centre for Welfare Reform￭ 17th October 2012 ￭ Adelaide, South Australia ￭

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The fight for real entitlementsVictories and defeats inEngland

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Simon Duffy - personal experiences1. London (1990-94) - IF plus 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 reformall of social care, rapid uptake, many lessons5. The Centre for Welfare Reform (from 2009) -support for innovators and sharing the learning

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Things to remember1. Its life, not services2. Individual funding is just a tool3. Systems can sneak back control4. Together we can do it

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We still have much still to learn

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After the biginstitutionswere closedPeople werenot freePeople werenot included

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Citizenship is the right goal

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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.

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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.

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Its my money

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20 year-old subversive, viral strategyChange driven from outside, within and below

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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.

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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

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Things to think aboutHow can we keep improving our own model ofself-directed support?What is worth pushing for?How can we set the best possible standard for theimplementation of NDIS?How can we partner with people with disabilitiesand families take a greater leadership role?

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Co-production - partnership based on a new system of power?

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Schools can lead the way...

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Jonathan’s storyFor the 3 years before 150 days in hospital -responding to problems with breathing.In the 3 years after leaving hospital he has spentonly 2 nights in hospital - for elective dentaltreatments.Personalised learning - on the job - 2 City & GuildsQualifications.Saving NHS, LA & Education•Over £100,000 in hospital stays•Over £300,000 in residential care costs•Over £100,000 of funding contributed by the LSC

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What I am most proud of

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Many ways of being in control

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You can use Individual Service Funds to have yourbudget managed for you

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Women’s organisations... understand personalisation

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Local AreaCoordinationCreating solutionsin community

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Self-directed support - its my life

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Phase One Report 2006

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Phase Two Report 2008

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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%

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Its life, not services, people want

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Efficiency comes from shifting power

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right to be a citizen - full1. Independent living access to ordinary life we have the right to2. Entitlement enough help for citizenship we have the right to be in3. Self-determination control of our own lives the rules & systems will be4. Openness clear and fair we are free to use our5. Flexibility money as we see fit we will share what we are6. Learning learning we will each make a7. Contribution contribution

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rethinking advocacy

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You can’t procure the best stuff

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It can’t always be government money

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Invest in people and community

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Peer support is the supportthat is most highly valued

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Real wealth is the means

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Good support connects

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Risk grows with institutionalisation

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Eligibility thresholds cause crises

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Time should make a difference

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assessments made in light of all facts {

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Questions people asked re NDISWhat support will there be for young people?How do Auslan users stay informed?How will we solve the problem of adversarialculture?Who is setting what is reasonable?What about inclusion of people in the process?How will funding levels be set?Will it take too long?How will we tackle wider cultural problems?What will happen after Federal election?

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What a good NDIS means to us• People with disabilities designing • People with disabilities must be in and running system control of the design of services -• Feels light, friendly, happy don’t limit us to what we’ve seen• I can be empowered and - let us dream - then come back optimistic to reality• Help me get access arts, culture, • Greater focus on relationships community and the creative • Avoid increase in specialist community disability services• Supports innovation, creativity - • Lets build networks it gives us power - if something is • don’t reinvent the wheel - lets not available we can build what build on what we’ve got - SMF - we need make it easy to connect• Lets us be connected to • We need to communicate better - community and in work its more about time to listen to us• Empowered to feel included • Universal building standards for• Gives opportunities to get our the 21st century voice out there • Power, control - people hear -• The money suits out lives - not nobody to speak on my behalf just the systems • Don’t let this be another• Its about the right kind of disappointing grand initiative! personal relationship -

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For more information go towww.centreforwelfarereform.org These slides are © Simon Duffy 2012 ￭ Publisher is The Centre for Welfare Reform ￭ Slides can be distributed subject to conditions set out at www.centreforwelfarereform.org ￭