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The Future of Self-Direction


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Dr Simon Duffy gave this talk to stakeholder in self-directed support from across Wisconsin. He explored some of the challenges that seem to be emerging internationally and some of the strategies that seem to be having the most powerful impact.

Published in: Government & Nonprofit
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The Future of Self-Direction

  1. 1. The future of self-direction Dr Simon Duffy of Centre for Welfare Reform and Citizen Network
 Goodman Community Center, 149 Waubesa St, 
 Madison, WI 53704 (12.00 - 5.00)
  2. 2. 1. Where does SDS fit in history of people with disabilities? 2. What do we learn from international experience of SDS? 3. What are the most exciting developments in SDS? 4. Citizen Network…
  3. 3. • We have seen 50 years of relative progress in disability rights and inclusion. • But this followed at least 150 years of regression and many of the dark forces that harmed us then can do so again. • The core values that underpin inclusion and equal citizenship for all are not well established.
  4. 4. Worries • Growing inequality, insecurity, stigma and scapegoating (e.g. UN reports on UK.) • New technologies to support eugenics (e.g. Iceland and Down Syndrome) • Isolationism and growing international fears (e.g. Asel, Brexit etc.) • As more groups start to ‘lose’ they can start to see their common goals of shared interest • There is a growing emphasis on the meaning of life, work and awareness of the limitations of materialism. • Global and local communication has never been easier. Hopes
  5. 5. Normal is not good enough…
  6. 6. Centre for Welfare Reform established in 2009 to try and advance collective learning
  7. 7. • Self-direction is a global movement with real progress being made around the world. • However resistance and regression also seems to be part of the picture. • Citizen Network - building on this European work - is trying to establish a larger global conversation.
  8. 8. Shared problems • Inflexibility - often initial opportunities for creativity are eroded by increasing regulation, scrutiny and conditionality. • Consumerism - systems often reinforce neoliberal picture as a life of shopping rather a life of community and citizenship. • Inadequacy - long-standing questions of adequacy and security of funding remain largely unexamined. • Means-testing - many systems (but not all) build in means-testing and assured poverty-making rules. • Individualism - many systems struggle to see citizens as family members, community members or peers.
  9. 9. • India - Micro-banking and community facilitation • Australia - Every Australian Counts, Now & Next • Finland - Not for Sale, PKN • Scotland - Self-directed support Act • England - Local area coordination, peer support, personalised transition • And many, many more… Lots of interesting solutions
  10. 10. Katrina’s son Jonathan has complex health needs. He has a tracheostomy and needs to take a breathing unit with him at all times. He suffers from severe epilepsy, which requires rectal medication for treatment. He has severe curvature of the spine, is double-jointed and has hypotonia. His health assessment described him as having severe learning disabilities, severe behavioural problems, global development delays and no speech. He also has bilateral deafness and eczema. In the last 3 years before leaving school Jonathan spent 150 days in hospital with breathing problems. After leaving school Jonathan had support that was recruited and controlled by his mum, and funded by an integrated personal budget. There were no more stays in hospital; he had a job where he was valued and earned several qualifications; his life changed for the better.
  11. 11. Now and Next recasts the relationship between the professional and the parent through combining the spirit of person-centred planning, peer support and enabling professionals and families to work together as true equals - respecting the ultimate authority of the family.
  12. 12. We don’t need to give our power away
  13. 13. More information at Follow @CforWR @simonjduffy @citizen_network Like e Contact Join