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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) 3 13/04/2015
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 13/04/2015
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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 13/04/2015
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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. 6 13/04/2015
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. 13/04/2015
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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” 13/04/2015
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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. 13/04/2015
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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) 13/04/2015
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12 Pillars of Independent Living
Access
Personal Assistant
Information 13/04/2015
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.” 15 13/04/2015
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) 16 13/04/2015
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 13/04/2015
Peer support & counselling
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Morris (2006)
B. TRAFFORD CASE STUDY
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Trafford’s background • •
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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
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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. 13/04/2015
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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. 13/04/2015
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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) 13/04/2015
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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 13/04/2015
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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) 13/04/2015
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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 Breakthrough UK Ltd
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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 13/04/2015
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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 13/04/2015
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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 36
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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
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