Citizenship & Self-Directed Support

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This talk was part of a day long seminar with the people of Christchurch who are starting the Enabling Good Lives programme. The talk explores how full citizenship for disabled people demands a very different social system. The final slide sets out the thoughts of the group on the kind of system of Self-Directed Support that people would like to see emerge in Christchurch.

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Citizenship & Self-Directed Support

  1. 1. Citizenship & Self-Directed Support Dr Simon Duffy ■ The Centre for Welfare Reform ■ 20th August 2013 ■ Enabling Good Lives, Christchurch
  2. 2. 1. Why is citizenship important? 2. What is citizenship? 3. What is self-directed support? 4. Questions and themes
  3. 3. Why is citizenship important?
  4. 4. What is wrong with institutions? 1.Devalued lives - the institution defines your place, your role, your purpose. 2.No freedom or control - the institution strips you of freedom and personal authority 3.Impoverishment - economic power is nullified 4.Sheltered, but homeless - a home is more than a roof - it’s vital to control privacy and security 5.‘Care’ not help - ‘care’ already assumes the passivity and lower value of the person ‘in care’. 6.Disconnected - the institution cuts you off and leaves you within a hierarchical system where abuse can become natural 7.Loveless - relationships have no place in the institution
  5. 5. 1. Direction - It’s risky if my life lacks meaning and value 2. Freedom - It’s risky if I cannot direct my life, communicate or be listened to. 3. Money - It’s risky if I lack money or if I cannot control my own money. 4. Home - It’s risky if I cannot control who I live with, my home and my privacy. 5. Help - It’s risky if I’ve no one to help me and if I cannot control who helps me. 6. Life - It’s risky if I am not a valued member of my community. 7. Love - It’s risky to have no friends or family. Why citizenship is safer
  6. 6. Citizenship is possible for everyone it just might take some extra thought
  7. 7. Being a citizen is better than being ‘normal’ it brings us together as equals but also as unique free individuals Equal and different
  8. 8. Citizenship is also very practical. We can use the idea of citizenship to think about how to help someone.
  9. 9. Citizenship is the right goal
  10. 10. What is citizenship?
  11. 11. 1. Purpose
  12. 12. Demanding of man that he assumes his condition and not till his neighbour's field, he [Rebbe Yaakov-Yitzhak, The Seer of Lublin] said: "There are many paths leading to perfection; it is given to each of us to choose our own, and by following it with great dedication, we can make it become our truth, our only truth." Elie Wiesel
  13. 13. Our real wealth...
  14. 14. 2. Freedom
  15. 15. I used to think that freedom was freedom of speech, freedom of the press, freedom of conscience. But freedom needs to include all of the lives of all of the people. Freedom is the right to sow what you want. It's the right to make boots of shoes, it's the right to bake bread from the grain you've sown and to sell it or not to sell it as you choose. The same goes for a locksmith or steelworker or an artist - freedom is the right to live and work as you wish and not as you're ordered to. But these days there's no freedom for anyone - whether you write books, whether you sow grain or whether you make boots. Vassily Grossman
  16. 16. 3. Money
  17. 17. You could no more make a city out of paupers than out of slaves. Aristotle Self-interest is the most powerful engine for individual and social development, in other words, social progress, in other words social justice. It is when the most disadvantaged in society have the opportunity to improve their lives in their own self-interest that change will take place. Noel Pearson
  18. 18. 4. Home
  19. 19. Then the old Vainamoinen put this into words:'Strange food goes down the wrong wayeven in good lodging;in his land a man's better at home loftier.If only sweet God would grantthe kind creator allowme to come to my own landsthe lands where I used to live!Better in your own countryeven water off your solethan in a foreign countryhoney from a golden bowl.' The Kalevala
  20. 20. 5. Help
  21. 21. There are eight degrees of charity, one higher than the other. The highest degree, exceeded by none, is that of the person who assists a poor Jew by providing him with a gift or loan or by accepting him into a business partnership or by helping him find employment - in a word, by putting him where he can dispense with other people's aid. With reference to such aid, it is said, “You shall strengthen him, be he a stranger or a settler, he shall live with you” (Lev. 25:35), which means strengthen him in such manner that his falling into want is prevented. Maimonides
  22. 22. 6. Life
  23. 23. True love leads a man to fulfilment, not by drawing things to himself but by forcing him to transcend himself and to be something greater than himself. True spiritual love takes the isolated individual, exacts from him labour, sacrifice, and the gift of himself. Thomas Merton
  24. 24. 7. Love
  25. 25. Resources multiply in networks created by intentionally building relationships that cross boundaries & serve people's deepest purposes. Seymour Sarason
  26. 26. What is self-directed support?
  27. 27. 40 plus years of self-directed support • always improves outcomes • always increases demand • sometimes reduces costs • system design is critical
  28. 28. 1 Rights - robust rights that give people effective entitlements 2 Control - person, or someone close to them, controls budget 3 Clarity - systems, rules and budgets are clear 4 Flexibility - budgets can be used in many different ways 5 Ease of Use - it is easy to plan, manage and control assistance 6 Community - person’s contribution to society grows 7 Sustainable - system is affordable, innovative and supported These would seem to be some of the qualities of an effective system of self-directed support.
  29. 29. 1. Rights
  30. 30. The system gave people gifts not rights, not citizenship
  31. 31. the government money fallacy... ...money can’t always be theirs
  32. 32. “It’s my life, my human rights”
  33. 33. 2. Control
  34. 34. It’s not about doing everything for yourself
  35. 35. 3. Clarity
  36. 36. The old system - services first
  37. 37. The new system - people first
  38. 38. 4. Flexibility
  39. 39. 5. Ease of Use
  40. 40. 6. Community
  41. 41. We don’t know enough about abuse; but we do know institutions increase the risk of it and having relationships reduces the risk of it.
  42. 42. 7. Sustainable
  43. 43. Positive change can happen at any levels, but requires the creation of opportunities for innovation
  44. 44. Innovation is complex, evolving and requires different strategies at different stages.
  45. 45. Questions and themes
  46. 46. 1. Whose money do you think it is? If it is the person’s entitlement what rules might still apply? - People need to understand their right to funding and some will need education. 2. Who should be able to manage the budget? What new systems might be useful to make control easier? - Assistance available to those who need it, ensuring budgets can be managed by people they can trust. Checks and balances need to be in place. System infrastructures that are in place ie providers use these where possible 3. Do you want to have some idea of your budget before you plan or only after you’ve planned? How would you decide what is a fair budget? - Lots of different ideas, budget first can avoid disappointment. However can also lead to thinking about money rather than person. 4. Is there anything you think people should NOT be able to use their budget for? If not, why not? - Illegal activities. Less restrictions equals more creativity. 5. Do you want one professional group to act as coordinators or not? If you do then who? If not, why not? - Many variables, dependant on person, their family etc 6. Is the local community an important factor in the new system? If so how might this link be best created? - Yes, important - Looks different for everyone. In an ideal world would occur naturally. Linking looks different for everyone. Could vary how people spend their $$. Brokerage/facilitation/educative role. Infrastructure needed, both facilities and information systems so people can find the right services for them. 7. What can be done to make the system affordable and to make the available funding go as far as possible? - Bureaucracy reduced. Collaboration between services and people so they Questions and Group Responses
  47. 47. If you found these slides interesting you might like to read...
  48. 48. Lots of free resources on all these topics and more: @simonjduffy and @cforwr - follow www.centreforwelfarereform.org.uk - subscribe like The Centre for Welfare Reform on Facebook
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