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Sam Sly
Beyond Limits (Plymouth)
   Social Worker for people with learning
    disabilities and mental health needs
   CSCI (CQC)
   Change Team Cornwall (changing housing
    and support that had gone badly wrong)
   Cornwall PCT continued to improve quality
   Bournemouth Campus re-provision
   United Response improving quality
   Developed ‘Hands Off Its My Home – a path
    to Citizenship’
   Director for Beyond Limits with Doreen
    Kelly
   Columnist for Learning Disability Today
3  year project with NHS Plymouth
  Personalising Commissioning
 Using Individual Service Funds
 Using Service Design & Working Policy
 20 people currently in Hospital placements
 20 people with big reputations
 20 people who will get a tailor made service
 20 people who will get a life that makes
  sense to them
‘People often end up in expensive out of area
placements because local systems have not the
flexibility to develop suitable personalised responses.
This leads to people being over-supported and cut off
from their own communities. There are currently
10,000 people with mental health problems supported
in out of area placements and research suggests at
least 5,000 of these are without significant clinical
justification. The use of individual budgets as part of
intentional programme to bring people back to their
own communities with personalised support could save
£100 million a year.

Vidhya Alkeson & Simon Duffy ‘Health Efficiencies - the possible impact of
personalisation in Healthcare ‘ 2011
   Individualised, local solutions providing good quality of life
    not those too large to provide individualised support, too
    far from their homes, and providing good quality of life in
    the home and as part of the local community.
   Direct payments and individual budgets should always be
    considered and be more widely available.
   Closer co-ordination between the commissioners paying for
    services, the managers providing services and the
    professional specialist advising on the support people need
    to ensure advice is both practicable and acted on.
   Commissioners should allocate a budget to be used to fund
    a much wider variety of interventions as an alternative to
    placement in a special unit.

Jim Mansell ‘Services for people with learning disabilities and challenging
    behaviour or mental health needs’ 2007
   All have been abused
   Have moved between 6-25 Institutions
   Youngest 26 Oldest 56
   First admission to an Institution aged 14-22
   All on MHA Section for between 5-14 years
   Most have moved to more and more secure
    accommodation as they have fought the system
   All families have felt loss of control, marginalised
    and physically unable to stay in touch
   All people have the same hopes and dreams as all
    of us
Citizenship and
 Personalisation
   Key 6 – Giving something back (Community
    Life)
 
   What needs to be achieved?
   It is by giving back to our community that we
    can help other people understand our worth.
    This means working, learning and enjoying
    leisure pursuits with other fellow citizens whilst
    making friends along the way.
 
   Why is it important?
   To overcome prejudice
   To make a contribution to the community
   To make relationships and friendships
Simon Duffy (2006) Keys to Citizenship
   The resources to enable people with learning
    disabilities to achieve a good life.
   Strengths – skills, gifts and abilities
   Connections (relationships) – family,
    friends, community networks and
    organisations
   Community (Access) – information,
    emotional and physical support
   Control (Assets) – income, property,
    savings, benefits
Pippa Murray, Simon Duffy, Nic Crosby (2008)
Service Design (Partners for Inclusion/Beyond
  Limits)

‘Every service is designed, from scratch, with
  only the person in mind, and modified in
  the light of experience and as things
  change. Individual service design in rooted
  in the organisation’s commitment to help
  everyone achieve citizenship for
  themselves’.
Personalised Support – Julia Fitzpatrick (2010) Published by the Centre for
   Welfare Reform
A good facilitator
The person
Family and
significant people in
their life
People who know
and care about the
person
People with strong
relationship with
person
   Planning and pre-
    move transition is
    funded (one off
    payment clawed back
    through reductions
    from years 2 onward)
   Post move transition
    is funded
   On-going budget
    flexible in first year
   Greatest reductions
    after year two and
    three
   Take time getting to know person and
    significant others
   In a comfortable environment
   Telling their story
   Being in control
   Direction
   Money
   Home
   Support
   Contribution (Giving something back)
   What does the
    person do with
    their time now
    (routines)?
   What should we
    keep doing?
   What should stop
    happening?
   What should they
    start doing?
   What should we
    start doing?
 What   hours of paid support do they need?
 What will happen in those hours?
 What support could help the person become
  more independent or develop more natural
  support?
 What do we need to do to keep them and
  others safe?
   (risk mapping and enabling is a natural by-
            product of service design)
   Who worked well in
    the past and who
    didn’t and why?
   What kind of person –
    quiet, busy and lively?
   What knowledge, skills
    and experience?
   What contracts are
    needed?
   Leadership skills
    needed?
   What hobbies interests
    should they have?
   Man or woman?
   Age?
 Being  seen as a fellow citizen by others
 Controlled by the person
 Provided by who you choose
 Enables you to do what you want and does
  not control what you do
 Invisible
 Simon Duffy (2006)
 It enhances the person’s dignity and respect
  in the community
 It helps the person be present in the
  community
 It helps the person participate in community
  life
 It helps the person develop and learn new
  skills
 It gives the person choice and control
 Many   great plans are made and fall down
  because they are not followed up by a
  detailed ‘how to’ bit.
 It is fundamentally important that once a
  service is designed a ‘how to’ plan is written.
  Partners for Inclusion and Beyond Limits call
  this a Working Policy.
 Involves the person (if they wish), present
  and past professionals and family
 Aged  28
 25 different placements furthest was 349
  miles away from home
 Went through Criminal Justice System
 Sectioned for 6 years
 Physical Intervention from aged 17
 Family seen as a problem
 She was seen as a big problem
 Always wanted to come home to be part of
  family
 Part of the family (highs and lows!)
 Has own home
 Interviews for her team
 Health problems stable
 Been to Bristol to visit friends twice
 Tickets for Peter Andre!
 Ice skating lessons
 Been Clubbing twice (first times in 11 years!)
 Says she never wants to go back to Hospital
   Hospital doesn’t work
    long or medium term
   Being away from family
    and community is
    destructive
   Planning for a normal
    life has to start from
    day one
   Matching teams makes
    the difference
   Individual flexible
    budgets
   Cultural change is
    required
   People want lives
   Hospitals
   Hostels and
    Campuses
   Residential Care
    Homes
   Don’t let
    ‘supported living’
    be the next
    institutions
   People want to live
    in their own homes
    just like you and
    me
Sam Sly

    Beyond Limits

 sam@beyondlimits-uk.org
sam.sly@enoughisenough.org.uk

     07900 424144

  www.beyondlimits-uk.org

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Nd ti presentation-2012-sam-sly

  • 2. Social Worker for people with learning disabilities and mental health needs  CSCI (CQC)  Change Team Cornwall (changing housing and support that had gone badly wrong)  Cornwall PCT continued to improve quality  Bournemouth Campus re-provision  United Response improving quality  Developed ‘Hands Off Its My Home – a path to Citizenship’  Director for Beyond Limits with Doreen Kelly  Columnist for Learning Disability Today
  • 3. 3 year project with NHS Plymouth Personalising Commissioning  Using Individual Service Funds  Using Service Design & Working Policy  20 people currently in Hospital placements  20 people with big reputations  20 people who will get a tailor made service  20 people who will get a life that makes sense to them
  • 4. ‘People often end up in expensive out of area placements because local systems have not the flexibility to develop suitable personalised responses. This leads to people being over-supported and cut off from their own communities. There are currently 10,000 people with mental health problems supported in out of area placements and research suggests at least 5,000 of these are without significant clinical justification. The use of individual budgets as part of intentional programme to bring people back to their own communities with personalised support could save £100 million a year. Vidhya Alkeson & Simon Duffy ‘Health Efficiencies - the possible impact of personalisation in Healthcare ‘ 2011
  • 5. Individualised, local solutions providing good quality of life not those too large to provide individualised support, too far from their homes, and providing good quality of life in the home and as part of the local community.  Direct payments and individual budgets should always be considered and be more widely available.  Closer co-ordination between the commissioners paying for services, the managers providing services and the professional specialist advising on the support people need to ensure advice is both practicable and acted on.  Commissioners should allocate a budget to be used to fund a much wider variety of interventions as an alternative to placement in a special unit. Jim Mansell ‘Services for people with learning disabilities and challenging behaviour or mental health needs’ 2007
  • 6. All have been abused  Have moved between 6-25 Institutions  Youngest 26 Oldest 56  First admission to an Institution aged 14-22  All on MHA Section for between 5-14 years  Most have moved to more and more secure accommodation as they have fought the system  All families have felt loss of control, marginalised and physically unable to stay in touch  All people have the same hopes and dreams as all of us
  • 8. Key 6 – Giving something back (Community Life)    What needs to be achieved?  It is by giving back to our community that we can help other people understand our worth. This means working, learning and enjoying leisure pursuits with other fellow citizens whilst making friends along the way.    Why is it important?  To overcome prejudice  To make a contribution to the community  To make relationships and friendships Simon Duffy (2006) Keys to Citizenship
  • 9. The resources to enable people with learning disabilities to achieve a good life.  Strengths – skills, gifts and abilities  Connections (relationships) – family, friends, community networks and organisations  Community (Access) – information, emotional and physical support  Control (Assets) – income, property, savings, benefits Pippa Murray, Simon Duffy, Nic Crosby (2008)
  • 10. Service Design (Partners for Inclusion/Beyond Limits) ‘Every service is designed, from scratch, with only the person in mind, and modified in the light of experience and as things change. Individual service design in rooted in the organisation’s commitment to help everyone achieve citizenship for themselves’. Personalised Support – Julia Fitzpatrick (2010) Published by the Centre for Welfare Reform
  • 11. A good facilitator The person Family and significant people in their life People who know and care about the person People with strong relationship with person
  • 12. Planning and pre- move transition is funded (one off payment clawed back through reductions from years 2 onward)  Post move transition is funded  On-going budget flexible in first year  Greatest reductions after year two and three
  • 13. Take time getting to know person and significant others  In a comfortable environment  Telling their story  Being in control  Direction  Money  Home  Support  Contribution (Giving something back)
  • 14. What does the person do with their time now (routines)?  What should we keep doing?  What should stop happening?  What should they start doing?  What should we start doing?
  • 15.  What hours of paid support do they need?  What will happen in those hours?  What support could help the person become more independent or develop more natural support?  What do we need to do to keep them and others safe? (risk mapping and enabling is a natural by- product of service design)
  • 16. Who worked well in the past and who didn’t and why?  What kind of person – quiet, busy and lively?  What knowledge, skills and experience?  What contracts are needed?  Leadership skills needed?  What hobbies interests should they have?  Man or woman?  Age?
  • 17.  Being seen as a fellow citizen by others  Controlled by the person  Provided by who you choose  Enables you to do what you want and does not control what you do  Invisible Simon Duffy (2006)
  • 18.  It enhances the person’s dignity and respect in the community  It helps the person be present in the community  It helps the person participate in community life  It helps the person develop and learn new skills  It gives the person choice and control
  • 19.  Many great plans are made and fall down because they are not followed up by a detailed ‘how to’ bit.  It is fundamentally important that once a service is designed a ‘how to’ plan is written. Partners for Inclusion and Beyond Limits call this a Working Policy.  Involves the person (if they wish), present and past professionals and family
  • 20.  Aged 28  25 different placements furthest was 349 miles away from home  Went through Criminal Justice System  Sectioned for 6 years  Physical Intervention from aged 17  Family seen as a problem  She was seen as a big problem  Always wanted to come home to be part of family
  • 21.  Part of the family (highs and lows!)  Has own home  Interviews for her team  Health problems stable  Been to Bristol to visit friends twice  Tickets for Peter Andre!  Ice skating lessons  Been Clubbing twice (first times in 11 years!)  Says she never wants to go back to Hospital
  • 22. Hospital doesn’t work long or medium term  Being away from family and community is destructive  Planning for a normal life has to start from day one  Matching teams makes the difference  Individual flexible budgets  Cultural change is required  People want lives
  • 23. Hospitals  Hostels and Campuses  Residential Care Homes  Don’t let ‘supported living’ be the next institutions  People want to live in their own homes just like you and me
  • 24. Sam Sly Beyond Limits sam@beyondlimits-uk.org sam.sly@enoughisenough.org.uk 07900 424144 www.beyondlimits-uk.org

Editor's Notes

  • #3: Decided after years of trying to persuade others to do ‘it right’ for people time to bite the bullet and have a go Doreen had run a person-centred organisation but wanted to work out how to transfer the ‘model’ to other organisations.
  • #4: A registered domiciliary Care Organisation Service Design then mini tender for long term support Working Policy with Beyond Limits or coaching other Organisations to implement the detail and reshape the way they provide support
  • #6: The Service Models Jim Mansell recommends underpin the project
  • #8: Home, Good Support, Money, Direction, Contribution, Authority – Rights and Duties – Simon Duffy Services with the person with power and in control and a life that makes sense to them
  • #9: But on the person’s own terms Often torn away from home, family, connections and communities where they were known and valued
  • #10: Resilience – keeps families fighting, keeps people fighting. These are what we need to have a good life.
  • #12: Family members, neighbours, taxi driver, advocates, friends, professionals, support workers People who knew them before systems kicked in Got to see the strengths, gifts and skills – the potential and the way forward Meet in a place comfortable for the person – more likely to contribute For every person so far we have been told they won’t contribute, they won’t be able to stay the full day, - for every person they have because it is a positive day about them and about a positive future.
  • #13: Examples Person 1. 2:1 24/7 support reduced to 1:1 73 hours. She now she spends some time on her own early evening and first thing in the morning. Her service costs have reduced from £211,000 per annum to £85,000 per annum. Person 2. reduced from 1:! 24/7 reduced to 40 hours per week with an on-call service for emergencies.   In just over 2 years his service reduced from £109,000 to £71,000
  • #14: What people had in their lives, how they were in different situations, what experiences they had good and bad, what support worked and didn’t. Authority – how will they remain in control of life, what support is required with communication, is representation required Direction – persons desires, hopes and dreams, how can we support them to reach their goals Money – what money is available Home – what kind of house, where does it make sense to live, sharing or alone, equipment AT adaptations. Support – what kind of support, how often and when is it needed, what kind of person Contribution – how will the person live, what relationships need to be maintained or strengthened, what interests, job do they want, how can they contribute to their community Concentrating on the positives – starting from the positive not the negative behaviours.
  • #15: What has worked in the past Lost hopes and dreams Things people used to be good at and liked to do Support that didn’t work in the past Routines are often made to fit the staff, building and others in Hospital (cigarettes breaks, meals, getting up and going to bed) What they do in Hospital is often ‘service-land led’ or things that they would do everyday that is labelled ‘activities’ and lots of groups.
  • #17: This then becomes your job ads and job specifications.
  • #20: Really detailed planning including especially what to do when someone is having a hard time. Looking at what has worked in the past and working with current provider to drill down into recent situations. This usually gives us big clues to what is going wrong!