Models for a disabled people’s user-led organisation

Adapted by the Strengthening DPULOs Programme from work originally

undertaken by Fiona Baird Associates

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Note on this presentationThis presentation was created as part of the development of a Disabled People’s User-Led Organisation in Hackney.

Since it contains a range of useful information on one way in which a DPULO was developed, it has been adapted for the purposes of the Strengthening DPULOs Programme in order to share learning appropriately.

Thanks to Health and Community Services Directorate, London Borough of Hackney / Fiona Baird Associates for allowing us to use an adaptation of this presentation. www.fionabairdassociates.com

Further information about the Strengthening DPULOs Programme is available here: http://odi.dwp.gov.uk/dpuloprogramme and www.facebook.com/dpulos

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What models should do• Enhance independent living

– Provide choice and access to services for disabled and older people – Provide new services/support disabled and older people say they want – Provide new ways of doing things that disabled and older people want

• Put disabled and older people more in control– Support the social model of disability– Be an appropriate user-led organisational model for an area– Users are involved in what services should look like and how services are delivered

• Be financially sustainable – Be fundable in the short term – Take into account future needs:

• Increased numbers of older people and disabled people in the Borough• With more support needs• Support new ways of assessment and funding – personalised budgets

– Be robust enough to get funding from a variety of sources in the longer term

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What is a disabled people’s user-led organisation?

• A disabled people’s user-led organisation is an organisation that is led and controlled by disabled people.

• National Centre for Independent Living membership criteria:

• Organisations to have a minimum of 75% controlling interest by local disabled people AND

• A constitutional and/or operational commitment to at least two of the following:– Independent Living– Direct Payments/Individual

Budgets– Social Model of Disability– Support of/for Personal

Assistance Users

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What is a Centre for Independent Living?

• Original concept developed in the US:– grass roots organisations run and controlled by disabled people. They

aim to represent the views of disabled people, and to provide services that support independent living so that people can fully participate in society.

• Supporting the move to personalisation (2005)– To assist disabled people and other support service users, to take over the

management and delivery of their health and social care services using direct payments

• Centres for independent living:– do not have a common structure or even a standard set of services– they reflect local needs– They may need to adapt to current social and economic challenges

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Questions to consider about services and user needs

• What VCS services are currently delivered by adult social care spend?

• What do users think about current and future services?

• What services could be delivered by a DPULO in the future?

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Potential reach of DPULO services

• Specialist disability expertise

• User involvement opportunities

• Services supporting independent living

• Access to employment

TrainingWork experienceMicro enterpriseSocial enterprise

Direct payments support

Health & wellbeing Housing support

Transport & mobility

Disability equality Access audits

Accessible advice & information

Consultation channel Info on lived experience

Self advocacyVolunteering and TimebankingPeer support and counselling

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Services

• Disabled and older people want to have economically advantageous activities and engage in the workforce

• Potential services – Training, volunteering and other

experiences that will improve prospects for getting a job

– Better support for working disabled people

– Person budgets will provide opportunities for micro enterprise for Hackney residents, including disabled and older people and their communities

– Are there opportunities for social enterprises run by disabled people, and for disabled social entrepreneurs?

• Access to employment

TrainingWork experienceMicro enterpriseSocial enterprise

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Services

• Disabled and older people want to make choices about how they live, have meaningful activities and engage in the community

• Potential services– Peer support for personal

budgets and personal planning

– Self advocacy services– More and more varied

opportunities for disabled and older people to give their time in a way that they want that is rewarding for them

– Develop volunteer/ timebank delivered services to support household duties/minor problems/befriending?

• User involvement

Self advocacyVolunteering and TimebankingPeer support and counselling

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Services

• Disabled led support for direct payments

• Many older and disabled people in Hackney will not be eligible for a personal budget but still need help in living independently

• Direct payments support– Brokerage – Peer support for personal budgets

and personal planning

• Other support– Mobility shop in Hackney– Training for staff working with

disabled and older people– Partnership working with other

VCS organisations to deliver more services supporting health and wellbeing (particularly mental health)

– Partnership working to provide more flexible transport options

• Independent living services

Health & WellbeingTransport & MobilityHousing supportDirect payments support

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Services

• Disabled and older people want a more influential voice in Hackney

• They want a seamless service across agencies and more accessible information and guidance

• Potential services– Accessible Resource Centre: ‘one stop

shop’ for up to date information on all services (statutory and voluntary) supporting independent living for users and workers

– ‘Accessible for all’ information and guidance (formats, languages, outreach, physical access)

– A case approach to queries across VCS agencies offering IAG

– Consumer/user feedback/service rating service to service providers and statutory bodies on the needs of disabled and older people

– Training and audits for statutory bodies and service providers

– Access officer

• Peer expertise

Disability equality Access auditsAccessible advice & informationConsultation channel Info on lived experience

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Models for independent living services

• User vehicles• Partnership

working for VCS

• Sole/lead organisation working

• User involvement

Social enterprise

CooperativeMicro

enterprise

ConsortiaVirtual CILA building

Wholly owned subsidiary

Lead-subcontractor relationshipsPublic-VCS

delivery

Timebank‘co-

production’

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Timebanks & Coproduction

Time bank vision and values• People are assets

– Everybody has something to give

• Redefining Work – Activities have to be recognised,

rewarded and counted as real work

• Giving and receiving – These are basic building blocks of

positive social relationships and healthy communities.

• Building Social Capital– Belonging to a mutually supportive

and secure social network brings more meaning new opportunities.

Co production• The term ‘co-production’ is increasingly

used in policy circles to describe the greater engagement of ‘service users’ in the design and delivery of services, particularly in social

• Co production mechanisms include time banks, befriending schemes, mutual support groups, peer support and volunteering.

• Benefits of co production:– Deeper more durable change than other

methods of public sector service delivery– Taps under-engaged assets of individuals and

communities– A change from a hierarchical delivery

structure

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Timebanking as a model or service• ‘Co production’ models

– Kings Cross Timebank• Hosted by HCCT with two other VCS

organisations to • delivers a contract for day services

for mental health users i• Camden Shares

– Age UK CCT• Hosted by Age UK Bromley• Volunteers integrated into the

Timebank – they also bank time credits

• Community Hub model– St Luke’s time bank

• Community model– Rushey Green time bank

Questions:• What is the value of time

banking to disabled and older people?

• What should be the time bank community/ies served?

• Should there be a focus on interest/location?

• What are preferred models?

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Micro enterprises• ‘Micro-enterprises’ are very small scale, highly tailored businesses

set up to meet the needs of small groups of local older or disabled people.

• Funding:– personal budgets, people’s own money or grants.

• Structures:– Some are entirely or mainly staffed by volunteers and others are owned

jointly by people who deliver and/ or use the service. • Ownership:

– Mutually owned, by the people who receive the service – Can involve disabled and older people themselves delivering support as

well as receiving it– Mutually owned, or social enterprises of front line workers

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Possible micro enterprise servicesPossible micro enterprise services• Supported tenancies • Small residential care homes • Day services • Meals • Support to people living in their

own homes • Short breaks • Befriending • Luncheon clubs • Drop in centres • Services which involve transport

Questions• Should disabled-led

micro enterprises be supported and developed?

• Should micro enterprise services be part of a DPULO?

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Working together - options

Essential for ANY collaborationCommon values

Focus on better outcomes for users

Light touch collaborationSome sharing of: ‘back office’ systems, project

service delivery, common recruitment & training of project staff; joint fundraising bids for project

New organisation/mergerOrganisations prepared to give up name &

logo, CEO and/or Trustees

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Potential structures for DPULOs

1. A federation of existing organisations, operating through an organisational hub which they manage

2. A new or existing DPULO, delivering services with partner organisations in the area

3. A virtual model