Breakthrough UK Ltd.
Developing Sustainable
User-led Organisations
Dr Pam Thomas and Dr Laurence Clark
Including disabled people
A. BACKGROUND
13/04/2015
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5 meanings of ‘personalisation’
1. It could mean more customer-friendly services that are
accessible at times that suit people. E.g. NHS Direct
2. It could mean giving users more say in navigating their way
through services. E.g. individual education plans in schools
3. It could means users have control over how money is spent.
E.g. Direct payments
4. It could mean users are not just consumers but codesigners and co-producers. E.g. Neighbourhood Watch
5. It could mean self-organisation. Services arise when
required, designed collaboratively by those who identify the
need. E.g. Berkeley CIL
(Leadbeater 2003)
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Transforming Social Care
“Support for at least one local user led
organisation and mainstream mechanisms
to develop networks which ensure people
using services and their families have a
collective voice, influencing policy and
provision.”
Putting People First, Dec ‘07
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Social Care Reform Grant
By 2011 councils must have in place:
“An enabling framework to ensure people can
exercise choice and control with accessible
advocacy, peer support and brokerage systems
with strong links to user led organisations.
Where ULOs do not exist, a strategy to foster,
stimulate and develop user led organisations
locally.”
DH LAC Circular, January ‘08
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Where did it all start?
• In the sixties at the University of California, 12 students
with physical impairments demanded a ‘right to living’.
• They were made to live apart from other students in a
wing of the Student Health Service at Cowell Hospital.
• Recognising they were being denied the right to selfdetermination, they set up Berkeley CIL.
• The CIL ran a pool of personal assistants who supported
the students to get up, get dressed and prepare meals as
well as helping them to navigate university bureaucracy to
arrange accessible seminar venues.
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Principles of Berkeley CIL
• Those who know best the needs of disabled
people and how to meet those needs are
disabled people themselves.
• The needs of disabled people can be met most
effectively by comprehensive programmes that
provide a variety of services.
• Disabled people should be fully included into
their community.
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Meanwhile in the UK…
• In December ’72 Paul Hunt, a
resident of the Le Court care
home wrote a letter to the
Guardian suggesting that
disabled people form a lobbying
group.
• One of his aims was “to
formulate and publicise
alternative forms of care”
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What is independent living?
“Independent living for disabled people is often
misunderstood. It does not mean disabled
people 'doing everything for themselves' but that
the practical assistance some disabled people
need should be provided and based on
individual choices and aspirations. It means
having the same choice, control and freedom as
other citizens at home, at work, in education,
and as equal citizens.”
DRC, 2005
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In other words…
• Independent living is not about controlling
disabled people’s lifestyles by managing
separate care for them
• It is about disabled people controlling their own
lifestyles by managing their own support, just as
non-disabled people do every day.
• Making choices and decisions about the
direction of your life are not passive services
that can be received.
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4 Basic Principles of Independent Living
1. That all human life is of value
2. That anyone, whatever their impairment,
is capable of making choices
3. That disabled people have the right to
assert control over their lives
4. That disabled people have the right to
participate fully in society
(Morris 1993)
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12 Pillars of Independent Living
Access
Personal Assistant
Information
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Transport
Equipment
Housing
Job
Money
Education
Advocacy
Peer Support
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Healthcare
What is a CIL?
“Centres for Independent / Inclusive Living are
grassroots organisations run and controlled by disabled
people. Their aims are that disabled people should have
control over their lives and achieve full participation in
society. They work towards these aims by representing
disabled people’s views locally and nationally, and by
providing services which promote independent living.”
Morris (2006)
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National Centre for Independent Living:
Definition
• Organisations that have a minimum of 75%
controlling interest by disabled people and that
have a constitutional and/or operational
commitment to at least two of the following:
–
–
–
–
Independent Living
Direct Payments
Social Model of Disability
Support of / for Personal Assistance Users
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Department of Health Definition
“User-led organisations are those where the people who
the organisation represents or provides a service to,
have a majority on the Management Committee or
Board, and where there is clear accountability to
members and/or service users.”
Service users are defined as:
“People who need support and/or equipment in order to
go about their daily lives and who use services that are
provided as part of the welfare state.”
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How are CILs different?
• Traditional professionally-dominated services
focused almost exclusively on medical
treatments and therapies within institutional
settings that effectively removed disabled people
from everyday life.
• CILs provide a new and innovative range of
services and support designed to empower
disabled people to adopt a lifestyle of their own
choosing within, rather than apart from, the local
community.
(Barnes 2007)
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A Network of User-led Services
Employment
support
project
Access
audits
Direct
Payments
Support
Advice and
information
service
Centre for
Inclusive
Living
Disability
equality
training
Advocacy
and Selfadvocacy
Consultation
&
Involvement
Housing
support
services
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Peer
support &
counselling
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Morris (2006)
B. TRAFFORD CASE STUDY
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Trafford’s background
•
•
•
•
Low baseline of investment in ULOs, lack
of infrastructure
Committed and informed Disability
Partnership
Lot of discussion but no real progress
Frustration and disappointment – all talk
and no action.
Way Forward
• CIL sub group – became user led, banned
jargon and removed number of officers
• Expression of interest issued for
organisation to develop shared vision and
business plan with Disabled People,
awarded by CIL sub group
• Best use of Social Care Reform Grant –
low level investment, great outcomes
Breakthrough UK
 Breakthrough UK became Trafford’s
partner
 Successful and respected DPO
 Worked with us
 Targeted consultation with disabled
community
 Led to shared vision and incremental
business plan based on 12 points of
independent living
C. RECOMMENDATIONS
FOLLOWING CONSULTATION
Drawn from consultations and experience
elsewhere including the Department of Health
User Led Organisations work
13/04/2015
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1. Recommendations for the Council
1. Trafford Council needs to:
a) Commit 3 years of funding to the development of a CIL in
Trafford, some of which could come from the council’s
Social Care Reform Grant.
b) In conjunction with the CIL sub-group, identify suitable
accessible premises in Trafford for the CIL;
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1. Recommendations for the Council
c) Extend funding for the GMCDP Trafford Information
Project beyond one year as this will deliver a key function
of the new CIL.
d) Revise its commissioning / procurement policies and
practices so that the procurement of services do not
disadvantage user-led organisation
e) Commit to procuring services from the CIL.
f) Keep its Disability Equality Action Training programme for
members and staff up-to-date.
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2. Recommendations for starting up
Some of the funding for the CIL should be used
to commission an established and experienced
Deaf / Disabled People’s Organisation (DPO) to:
a) Contact all those Deaf and disabled people who
have already expressed an interest to invite
them to a meeting with the CIL subgroup to form
an Interim Governing Body (IGB).
b) Provide a secretariat to the IGB in the formative
stages.
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2. Recommendations for starting up
c) Deliver third sector board development training
for the IGB.
d) Support the IGB to use the recommendations
of this report to develop aims and objectives
to form the basis of a strategy and business
plan which will include income generation.
e) Discuss with GMCDP the possibility of the
IGB being the reference / steering group for
the information project.
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3. Organisational structure
The commissioned DPO needs to support the
IGB to:
a)Develop policies, a constitution, memorandum
and articles
b)Register the new organisation as a Community
Interest Company
c) Develop a communications plan, business plan
and strategic plan (including a long-term
strategy for income generation)
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3. Organisational Structure
d) Recruit staff
e) Bid for funding for new projects
f) Work with Deaf board members to identify a
space where Deaf people can meet
g) Review progress
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4. Functions of the CIL
• These were based on the
functions already discussed
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5. Partnership working
The commissioned DPO needs to support the IGB to:
• Ensure that the CIL is included in local partnership
structures;
• Build relationships with commissioners;
• Develop networks and partnerships with other CILs and
disabled and Deaf people’s organisations;
• Communicate with other local organisations.
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6. Staffing
• We recommended a staffing
structure for the future
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D. ACTION PLAN
Developed using recommendations
and incremental structure
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Stage One
•
•
•
•
First six months
Establishing
Quick start
Demonstrate something is happening to
make a difference
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Stage One
• Secure resources from the Social Care
Reform grant
• Seek financial support from DH NW and
NWGO from their ULO action and learning
funding
• Commission an existing and experienced
organisation of disabled people (DPO)
(page 7)
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Stage One
• Contact Deaf / disabled people who have
said they are interested in being involved
• Fulfil the role of steering group for GMCDP
information project |(IGB)
• Deliver third sector training for the IGB
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Stage One
• Develop policies, constitution,
memorandum and articles
• Confirm Interim Governing Body
as the Board
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Stage Two
• Months 7 to 12
• Putting things in place
• Preparing to be an independent
organisation
• Recruit staff, manager, admin, advocacy
worker, volunteering and peer support
worker
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Stage Two
• Communicate and build networks with
DPOs
• Build networks with commissioners
• Ensure commissioners understand the
Independent Living agenda
• Communicate with carers’ groups
• Plan and hold open / inaugural meeting
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End ofEnd
Stage
One Structure
of stage
two
Board of Trustees
Strategic
Development
Manager
Advocacy Worker
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Volunteering /
Peer Support
Worker
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Administrative
Assistant
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Stage Three
• Months 13 to 15
• Secure other funding to build functions
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Action Plan Stage Three
•
•
•
•
Register as a CIC
Bid for funding for functions
Establish Trafford Mystery shoppers spoke
Develop a young disabled people’s forum
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End of Stage Three Structure
Board of Trustees
Strategic
Development
Manager
External
Relations
Administration
Projects
Internal
Projects
Administrative
Assistant
Externally
Managed
Projects
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Stage Four
•
•
•
•
•
Months 16 to 18
Consolidation
Review, reflection
Ensure stability
Readiness to be independent
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Stage Four
•
•
•
•
•
Review progress
Review strategic plan
Review business plan
Review staffing
Ensure stability and plan for future
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Stage Four
• Responsibility of staff transfers from DPO
to CIL
• Hold open meeting
• DPO withdraws
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Stage Five
• Months 19 months onwards
• Following exit of DPO
• Continuing Social Care funding until month
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Stage 5
• Extend function to include other aspects of
12 action points of independent living
• Open meetings
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Possible structure after stage 5
Board of Trustees
Strategic
Development
Manager
Administration
External
Relations
External
Relations
Manager
Operations
Manager
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Projects
Projects Manager
Finance
Worker
Involvement
Worker
Internal
Projects
Administrative
Assistant
Income Generation
Worker
Externally
Managed
Projects
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Following the consultation
• The business plan based on views of
citizens led to greater clarity and
ownership at all levels
• Able to develop incremental budget,
aligned to personalisation agenda,
proposed shifting resources from building
based day care to CIL
• Use of SCRG re advocacy and peer
support / brokerage
Mentoring
• Use of Breakthrough as “parenting
organisation” - key mechanism to overcome lack
of infrastructure
• Capitalise on high level of commitment from
local disabled people and expertise within
DPO’s
• Building capacity for local solution
• North West JIP funding to Breakthrough to
recruit and support Interim Governing Body
Mentoring
• Developing learning and development
programme
• Ensure representation of diverse groups
• Building strategic alliances
• Action learning – overseeing GMCDP
information project, funded through innovation
fund
Future
• Consultation with current users re use of
day centre building as CIL
• Once IGB in place – funding for advocacy
and peer brokerage project
• Develop into Community Interest
Company
• 18 month exit strategy re Breakthrough UK
Learning
• Co-production fundamental to success
• Citizen Involvement Officer – key role
• Need to build trust and respect, positive
risk taking on all sides
• Importance of valuing knowledge and
expertise of DPO’s and disabled people
• Need for political ownership
• Give up jargon
Learning
• Importance of alliance and relationship
building
• Small steps – find pragmatic way forward,
momentum will quickly build.
• Align to transformation agenda
• Creative use of SCRG
• Importance of corporate ownership of
agenda