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Putting Fuel on the Fire - Advocacy in the North


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Simon Duffy gave this talk at the North East and Cumbria Advocacy Conference on 30th March 2017 in Newcastle. He explores why citizenship matters and what are the challenges we face in the years ahead.

Published in: Government & Nonprofit

Putting Fuel on the Fire - Advocacy in the North

  1. 1. Putting Fuel on the Fire Advocacy in the North
  2. 2. 1. Who do we want to be? 2. What kind of world do we want? 3. Where should we start?
  3. 3. I Citizenship
  4. 4. • Why citizenship matters • What does it mean to be a citizen • Why advocacy needs citizenship
  5. 5. Institutions are not with with walls, but ideas.
  6. 6. Citizens = Different + Equal
  7. 7. Dr Simon Duffy of the Centre for Welfare Reform on “Citizenship & Advocacy” - combined slides from keynote and workshop for the National Advocacy Conference 13th October 2016 - Birmingham
  8. 8. This is the ‘stuff’ of citizenship by which we protect our status as equals 1. Finding our sense of purpose 2. Having the freedom to pursue it 3. Having enough money to be free 4. Having a home where we belong 5. Getting help from other people 6. Making life in community 7. Finding, sharing and giving love
  9. 9. Discussion
  10. 10. II System Change
  11. 11. • How we got here • The state of inclusion • The system we need
  12. 12. Family or friends Group homes Prison (not on books of LA) Social landlord Registered care home (in area) Registered care home (out of area) Private tenant ATUs (mostly out of area) Adult placement Owner occupier Registered nursing home Hospital Sheltered housing Sofa surfer Other B&B Emergency hostel Prison (on books of LA) Probational Mobile home Rough sleeper Refuge 35,340 people live outside their community (20%) 77,470 live in an institutional services or residential care (49%) 23,845 have what most people would call their own home (15%) Sources: NB This data covers 158,000 people with learning disabilities who have come to the attention of LAs as outlined in Public Health England (2014) People with Learning Disabilities 2013. Data on people in out of area placement is from Na- tional Mental Health Development Unit (2011) In Sight and in Mind - A toolkit to reduce the use of out of area mental health services. London, National Mental Health Development Unit. Plus prison data.
  13. 13. Supported Accommodation Living with a partner Living on your own Living with other relatives Living with parents Where people with learning disabilities live in England
  14. 14. Living with 4 or less Living with between 10 and 5 Living with more than 10 Group home sizes for people with learning disabilities
  15. 15. 0 50 100 150 200 250 300 350 Residential respite Domicilary care Outreach Family placement Day centre Individual day support Residential care Nursing home Residential colleges Specialist day services Group homes 24 hour support Institutional units Numbers per service Typical service use in Lancashire - early 2000s
  16. 16. £0 £50000 £100000 £150000 £200000 Residential respite Domicilary care Outreach Family placement Day centre Individual day support Residential care Nursing home Residential colleges Specialist day services Group homes 24 Hour support Institutional units Prices for different services Price of services in Lancashire - early 2000s
  17. 17. £0mn. £2mn. £4mn. £6mn. £8mn. £10mn. £12mn. Residential respite Domicilary care Outreach Family placement Day centre Individual day support Residential care Nursing home Residential colleges Specialist day services Group homes 24 hour support Institutional units Expenditure on services Expenditure pattern in Lancashire - early 2000s
  18. 18. 0% 10% 20% 30% 40% 50% 60% 70% 80% 73% of working age people have a job Only 7% of people with learning disabilities have a job Why do so few people have real jobs?
  19. 19. …confused responsibility & liability
  20. 20. Discussion
  21. 21. III Resisting Institutions
  22. 22. • Where are we now • What can we learn from freedom fighters • What should we do about it
  23. 23. • England was one of the first countries to close its large institutions - although the process took 
 40 years - with the last institution closing in 2010. • The England's model of deinstitutionalisation was a typical 'early model' with most 'community' provision (a) groups homes + (b) day centres. However groups homes are relatively small. • Families remain under-supported and reliant on crisis to generate entitlement to support. • Special schools dominate education process - although there is some support for inclusion. Employment rates are extremely low.
  24. 24. In this first period of the pilot Beyond Limits worked with 6 individuals. 5 of the group were women and their ages ranged from 28 to 56. Thee average length of time spent in institutions was 19 years, with 3 of the group having spent more than half of their lives in institutions. People entered the institutions at a very young age, ranging from 14 to 20. Institutionalised placements last on average just less than 2 years. On average each person had been in 10 different institutional settings, including: • Residential schools (n=3) • Acute hospitals (n=3) • Residential colleges (n=1) • Semi-secure hospitals (n=6) • Specialist facilities (n=6) • Residential homes (n=5) All six had been victims of abuse, including: • Neglect (n=2) • Sexual abuse (n=6) • Physical abuse (n=5) • Financial abuse (n=1) All of these young people had been known to children services, although families reported that family support had been non-existent or unreliable. All 6 are on the mental health services’ Care Programme Approach. All 6 were sectioned under the Mental Health Act (1983) and 3 had been in trouble with the police or the courts at some time. Duffy S (2013) Returning Home: piloting personalised support. Sheffield, Centre for Welfare Reform.
  25. 25. • In the last 3 months 25.9% of inpatients had harmed themselves • 21.0% of inpatients had suffered an accident in the last 3 months • 22.2% of people had suffered physical assault in the last 3 months • Physical restraint had been used 34.2% of people in the last 3 months 11.4% had suffered seclusion in the last 3 months • 56.6% of people had been the subject of at least one incident involving self harm, an accident, physical assault against them, hands-on restraint or seclusion during the last three months • Antipsychotic medication used regularly or at least once in the last 28 days for 68.3% of the people in the units Duffy S (2015) Getting There - lessons from Devon & Plymouth’s work to return people home to their communities from institutional placements. Sheffield, Centre for Welfare Reform citing Public Health England (2013) Learning Disability Census Report 2013. London, HSCIC.
  26. 26. 0 100 200 300 400 500 600 700 800 > 10 yrs5-10 yrs2-5 yrs1-2 yrs6-12 mths3-6 mths0-3 mths Length of stay for people with learning disabilities in inpatient ‘facilities’ Note that this describes length of stay in a particular institution - people are often moved from place to place and so many people will have been away from home for many years longer than these figues suggest. [Source: Learning Disability Census, 2013. n=3250]
  27. 27. [Source: Learning Disability Census, 2013. n=3250] 0 300 600 900 1200 1500 £364,000£312,000£260,000£208,000£156,000£104,000£78,000 We spend over £0.5 billion on 3,250 people with learning disabilities in inpatient ‘facilities’ The average cost of one of these institutional and typically abusive places is over £172,000 per year.
  28. 28. What do the freedom fighters teach us? • Citizenship • Creativity • Community
  29. 29. The goal of personalised support is citizenship
  30. 30. Other research demonstrates the value of flexibility…
  31. 31. Inclusion Glasgow worked with people with complex disabilities, moving from institutions to individually designed support solutions in the community. Research on the work of Inclusion Glasgow demonstrated high levels of efficiency, improvements in people’s lives and lower costs over time.
  32. 32. Choice Support converted a block contract for 83 people into 83 personal budgets - managed by the organisation - ie. Individual Service Funds (ISFs). This work was associated with reduced costs and improved lives. Like many service providers, Choice Support were happy to accept short termination periods on that contracts - and the ability of people to end those contracts - instead of risky block contracts subject to tendering and procurement.
  33. 33. What would citizens do? • Respect each other as equals • Welcome each other into community • Organise to overturn injustice
  34. 34. • Organise better - (cf. Every Australian Counts) - disability campaigns need to be more universal, united and ambitious. • Do better - Organisations are capable of much more. They need to break free from the hold of the commissioner & provider split that has blocked innovation. • Think better - This is about basic rights and the kind of society we want to live in. Citizens have rights and those rights should be protected by constitutional checks and balances.
  35. 35. Discussion
  36. 36. @citizen_network
 @simonjduffy e