Simon duffy nasddds slides 2


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Simon duffy nasddds slides 2

  1. 1. The Long JourneyDr Simon Duffy ■ The Centre for Welfare Reform■ 9th May 2013 ■ NASDDDS Conference, Oklahoma CityAn International Perspective on Supporting Families andIndividuals with Developmental Disabilities
  2. 2. Thoughts I want to shareThe shadow of the institution is very longTaking citizenship seriously changes everythingThere is a bigger picture emergingIt is time to think more deeply
  3. 3. The world is a big place......and all we see are little pieces
  4. 4. The long shadow of the institution
  5. 5. Challenges of de-institutionalisationDo we understand the real problem?Do we need to take the long road?Why not go straight to citizenship?
  6. 6. We are all very familiar with theinstitution as the defining evilwhich we want to overcome...but do we really understandthe true nature of this evil?
  7. 7. De-institutionalisation in Englandreally gained momentum in the1980s
  8. 8. Often English de-instutitionalisationwas institutions without the park
  9. 9. There is not just one kind of institutionwe bring the institution with us
  10. 10. In Scotland de-institutionalisationwas delayed until the 1990s
  11. 11. But this did mean ambitions wereoften higher:real homesreal jobsreal livesreal relationshipsScotland leap-frogged England
  12. 12. Tailor everything to theindividual...
  13. 13. Today Finland is struggling with thisde-institutionalisation is in danger ofbecoming re-institutionalisationYet there are also excitinginnovations and possibilities
  14. 14. Taking citizenship seriously
  15. 15. Questions about citizenshipCan the idea of citizenship help us find our way?Can we shift real power and control to people?Who helps make citizenship real?
  16. 16. Being a citizen isbetter than being‘normal’it brings ustogether as equalsbut also as uniquefree individuals
  17. 17. Citizenship isalso verypractical
  18. 18. Citizenship ispossible foreveryoneit just mighttake someextra thought
  19. 19. In Scotland we began to developthe idea of self-directed supportbut the appetite was limited in thelate 1990s
  20. 20. England was struggling to meet theaspirations of families and peoplewith intellectual disabilities. Thisprovoked a new interest in self-directed support.
  21. 21. we did ‘professional gifts’not citizenship
  22. 22. Early successes includedShifting towards entitlements - not giftsGetting people truly flexible budgetsFocusing on outcomes - not servicesAvoiding the trap of ‘brokerage’Process of collective innovation
  23. 23. Self-directedsupportdevelopedquickly byfocusing onspaces forinnovationwithin theold system
  24. 24. In England early success has beensomewhat over-taken by mindlessimplementation of ‘the model’rather than on-going innovation.
  25. 25. Government spent £0.5 billion onimplementation:•more processes - not less•more specialist IT - in an open source world•more ‘consultants’•more middle-management•over-complication rather than simplification•burdening people and professionals•attention going upwards
  26. 26. Australia is now redesigning itswhole system around individualisedfunding and the promise of extrafunding
  27. 27. Different State systems are to be replaced withone Federally controlled system, self-management is a possibility, but:•care manager controlled•fear of entitlements•rationing through process•high risk of inflexibility•perverse incentives for all
  28. 28. Citizenship itself cannot be just a giftfrom smart well-intentionedprofessionalwe makepowertogether
  29. 29. Darker shadows emerging
  30. 30. Emerging questionsAre we entering a new and darker era?Can we see the new form that older evils take?Are we ready to defend each other?
  31. 31. the name of Enlightenment we are eliminating wholecategories of persons. For example: So overwhelming is ouranimus against the less-than-perfect that nearly 90% ofpregnancies that test positive for Down syndrome are aborted inthe United States today, all under the rubric of choice. In thename of expanding choice and eliminating suffering we arenarrowing our definition of humanity and, along the way, ourresponsibility to create welcoming environments for all children.Jean Bethke Elshtain from The Abolition of Man in C S Lewis asPhilosopher[figure for UK is 92%]
  32. 32. We see many different groups pulled into thesame kind of hell...
  33. 33. Hopeful paths and deeper roots
  34. 34. Hopeful possibilitiesNew ways of finding common causeNew ways of giving voice to old valuesNew ways of solving old problems
  35. 35. Our real wealth is in ourown hands
  36. 36. It’s time for constitutionalthinking
  37. 37. Could we take citizenship seriously?• Human rights at heart ofsystem• Minimum universal securitiesas rights• Fair and integrated tax-benefitsystem• Individual freedom for all• Families and communitiesrespected
  38. 38. Thank you USAfor the inspiration to beginfor the challenge to try and go furtherfor your willingness to reflect more deeplyfor your companionship in travelling hopefully
  39. 39. 1.Visit our library or subscribe to The Centre forWelfare Reform:www.centreforwelfarereform.org2.Twitter users can follow @cforwr and@simonjduffy3.Like The Centre for Welfare Reform onFacebook