Developing Sustainable User-led Organisations Dr Pam Thomas and Dr Laurence Clark.

Breakthrough UK Ltd.Breakthrough UK Ltd.

Including disabled people

Developing Sustainable

User-led Organisations

Dr Pam Thomas and Dr Laurence Clark

A. BACKGROUND

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© Breakthrough UK Ltdwww.breakthrough-uk.com

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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 co-designers 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 GrantBy 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 self-determination, 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 Living1. 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 Transport Equipment Housing

Job Money EducationPersonal Assistant

Information Peer SupportAdvocacy Healthcare

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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

Employment support project

Access audits

Access audits

Advocacy and Self-advocacy

Advocacy and Self-advocacy

Housing support services

Housing support services

Consultation &

Involvement

Consultation &

Involvement

Disability equality training

Disability equality training

Peer support &

counselling

Peer support &

counselling

Advice and information

service

Advice and information

service

Direct Payments Support

Direct Payments Support

Centre for Inclusive

Living

Centre for Inclusive

Living

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

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19/04/23 © Breakthrough UK Ltdwww.breakthrough-uk.com

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1. Recommendations for the Council1. 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 Councilc) 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.

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 Structured) 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 workingThe 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

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

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 of Stage One Structure

Board of Trustees

Strategic Development

Manager

AdministrativeAssistant

Advocacy WorkerVolunteering / Peer Support

Worker

End of stage two


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Stage Three

• Months 13 to 15

• Secure other funding to build functions

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


Manager

AdministrationExternalRelations

Projects

InternalProjects

ExternallyManagedProjects


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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19/04/23© Breakthrough UK Ltd

www.breakthrough-uk.com

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Possible structure after stage 5

Board of Trustees


Manager

AdministrationExternalRelations

Projects

Operations Manager

FinanceWorker

Projects Manager

InternalProjects

ExternallyManagedProjects

ExternalRelationsManager

InvolvementWorker

Income GenerationWorker


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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Developing Sustainable User-led Organisations Dr Pam Thomas and Dr Laurence Clark.

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